Rocking the Cradle:

Ensuring the Rights of 

Parents with Disabilities and 

Their Children

National Council on Disability

September 27, 2012
Letter of Transmittal

September 27, 2012

The President

The White House

Washington, DC 20500

Dear Mr. President:

The National Council on Disability is pleased to submit the enclosed report, “Rocking the Cradle: 

Ensuring the Rights of Parents with Disabilities and Their Children.”

Despite a dark history marked by the eugenics movement, increasing numbers of people 

with disabilities are choosing to become parents. Recent research reveals that more than 

4 million parents—6 percent of American mothers and fathers—are disabled. This number will 

unquestionably increase as more people with disabilities exercise a broader range of lifestyle 

options as a result of social integration, civil rights, and new adaptive technologies. Likewise, 

there has been a dramatic increase in the number of veterans who are returning from war with 

service-connected disabilities, some of whom may already be parents and others who will enter 

parenthood after acquiring their disability.

The right to parent without interference is protected by the U.S. Constitution and balanced by the 

judicially recognized power of the state to interfere to protect the well-being of its children. The 

factors used in both dependency court and family court proceedings to determine whether children 

need to become wards of the state and which parent is the most competent custodian may be 

reasonable. Nonetheless, these rules are not objectively or justly applied to parents with disabilities 

and their children. 

Even today, 22 years after the passage of the Americans with Disabilities Act, parents with 

disabilities are the only distinct community of Americans who must struggle to retain custody of 

their children. Removal rates where parents have a psychiatric disability have been found to be 

as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent 

to 80 percent. In families where the parental disability is physical, 13 percent have reported 

discriminatory treatment in custody cases. Parents who are deaf or blind report extremely high 

rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose 

custody of their children after divorce. In addition, prospective parents with disabilities have more 

difficulty when it comes to accessing reproductive health care such as assisted reproductive 

technologies, and they face significant barriers to adopting children.

Clearly, the legal system is not protecting the rights of parents with disabilities and their children. 

Fully two-thirds of dependency statutes allow the court to reach the determination that a parent is 

unfit (a determination necessary to terminate parental rights) on the basis of the parent’s disability. 

National Council on Disability

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families.

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov
In every state, disability may be considered when determining the best interest of a child for purposes 

of a custody determination in family or dependency court. A nexus should always be shown between 

the disability and harm to the child, so that a child is taken from a custodial parent only when the 

parent’s disability is creating a detriment that cannot be alleviated. However, this is not the reality. 

NCD undertook this groundbreaking study to advance understanding and promote the rights of 

parents with disabilities and their children. This report provides a comprehensive review of the barriers 

and facilitators people with diverse disabilities—including intellectual and developmental disabilities, 

psychiatric disabilities, sensory disabilities, and physical disabilities—experience when they are 

exercising their fundamental right to create and maintain families. The report also describes the 

persistent, systemic, and pervasive discrimination against parents with disabilities. It analyzes how 

U.S. disability law and policy apply to parents with disabilities within the child welfare and family law 

systems, and the disparate treatment of parents with disabilities and their children. Examination of 

the impediments prospective parents with disabilities encounter when adopting or accessing assisted 

reproductive technologies provides further examples of the need for comprehensive protection of 

these rights.

This report sets forth suggested action to ensure the rights of parents with disabilities and their 

children. Whether such action is taken at the state or federal level—as an amendment or a new law—

the need for action could not be more timely or clear. 

In closing, NCD commends your Administration for its commitment to family values. Parents with 

disabilities and their children deserve support, not stigma. We look forward to working with you to 

ensure that the recommendations in this report are implemented.

Sincerely,

Jonathan Young, PhD, JD

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate, the Speaker of the U.S. 

House of Representatives, and the Director of the Office of Management and Budget.)
National Council on Disability Members and Staff

Members

Jonathan M. Young, PhD, JD, Chairman 

Janice Lehrer-Stein, Vice Chair

Gary Blumenthal

Chester A. Finn

Sara Gelser

Matan Aryeh Koch

Stephanie Orlando

Kamilah Oni Martin-Proctor

Lonnie Moore 

Ari Ne’eman

Dongwoo Joseph (“Joe”) Pak, MBA

Clyde E. Terry

Fernando M. Torres-Gil, PhD

Linda Wetters

Pamela Young-Holmes 

Staff

Aaron Bishop, Executive Director 

Stacey S. Brown, Staff Assistant

Julie Carroll, Senior Attorney Advisor

Lawrence Carter-Long, Public Affairs Specialist

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Confidential Special Assistant / Coordinator of Administration

Geraldine-Drake Hawkins, PhD, Senior Policy Analyst

Sylvia Menifee, Director of Administration

Carla Nelson, Administrative Specialist

Robyn Powell, Attorney Advisor

Anne Sommers, Director of Legislative Affairs & Outreach

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 3
Acknowledgments

The National Council on Disability (NCD), and particularly Robyn Powell, express appreciation to Through 

the Looking Glass, the NIDRR-funded National Center for Parents with Disabilities and Their Families—

specifically Ella Callow, Megan Kirshbaum, and Paul Preston—for their assistance in writing sections 

of this report, as well as their insight and guidance throughout the research and drafting of the report. 

NCD also recognizes Lindsey Coffey, associate at Ropes and Gray, for her assistance and guidance 

in drafting the chapter on assisted reproductive technologies. NCD thanks the key informants who 

provided varied perspectives and valuable contributions. Finally, NCD expresses its gratitude to the 

parents and prospective parents who shared their stories and experiences.

4 National Council on Disability
Table of Contents

List of Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Summary of Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Findings and Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Chapter 1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

The Evolution of Parenting in the Disability Community . . . . . . . . . . . . . .  3

Parenting with a Disability in the 20th Century . . . . . . . . . . . . . . . . . .  3

Parenting with a Disability Today: The Eugenics Movement’s 

Backdoor? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Current Data on Parents with Disabilities and Their Families . . . . . . . . . .  4

Fundamental Principles of Parenting Rights in the United States . . . . . .  4

Dependency Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Family Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Adoption Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Purpose and Structure of Report . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Chapter 2. Research Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Chapter 3. Disability Law Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Federal Disability Rights Laws: An Overview . . . . . . . . . . . . . . . . . . . . . . .  5

Rehabilitation Act of 1973 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Americans with Disabilities Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

Title II of the Americans with Disabilities Act . . . . . . . . . . . . . . . . . . .  5

Title III of the Americans with Disabilities Act . . . . . . . . . . . . . . . . . . .  5

Ensuring Accessibility for the Whole Family . . . . . . . . . . . . . . . . . . . . . . . .  6

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Chapter 4.  Pursuing Parenting Rights Through the Convention on t

Rights of Persons with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Respect for Home and the Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 5
Access to Reproductive Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Additional Protections for Parents with Disabilities and Their Children . .  6

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Chapter 5.  The Child Welfare System: Removal, Reunification, and Termination . . .

The Child Welfare System: A Brief Overview . . . . . . . . . . . . . . . . . . . . . . .  7

Disability Law and the Child Welfare System . . . . . . . . . . . . . . . . . . . . . . . . 74

Disparate Impact of Child Welfare System on Parents with 

Disabilities and Their Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 76

Discriminatory State Statutes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Recurrent Barriers in Child Welfare Cases Involving Parents 

with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Adoption and Safe Families Act of 1997 and Its Impact on 

Parents with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  8

Perceived Limits on Application of the Americans with 

Disabilities Act at Termination Phase . . . . . . . . . . . . . . . . . . . . . . . . .  9

Bias, Speculation, and the “Unfit Parent” Standard . . . . . . . . . . . . . .  9

Issues in Meaningful Participation and Representation . . . . . . . . . . .  9

The Impact on Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106

Chapter 6.  Parental Disability and Child Welfare in the Nati

American Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109

The Tribal Context: A Brief Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109

The History of Native Americans and Child Welfare . . . . . . . . . . . . . . . . . 109

The Statistics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110

Summary of the Indian Child Welfare Act . . . . . . . . . . . . . . . . . . . . . . . . . . 110

The Intersection of the ADA and ICWA . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110

Lack of Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111

Need for Culturally Relevant Services and Training . . . . . . . . . . . . . . . . . . 111

Need for Data Collection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112

Chapter 7.  The Family Law System: Custody and Visitation . . . . . . . . . . . . . . . . . . . . 

The Family Law System: A Brief Overview . . . . . . . . . . . . . . . . . . . . . . . . . 114

Disability Law and the Family Law System . . . . . . . . . . . . . . . . . . . . . . . . . 114

6 National Council on Disability
The System Parents with Disabilities and Their Families Are 

Likely to Experience . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115

Bias, Speculation, and the “Best Interest of the Child” Standard . . . . . . . 119

The Patchwork Quilt of State Laws . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

Issues in Meaningful Participation and the Total Lack of 

Guaranteed Representation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

The Impact on Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

Chapter 8.  Inappropriate and Unadapted Parenting Assessments 

Child Welfare and Family Court . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  12

The Role of Assessments in Determining Outcomes . . . . . . . . . . . . . . . .  12

Bias in Assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

Testing of People with Disabilities in General . . . . . . . . . . . . . . . . . . . . . .  13

Assessment of Parents with Disabilities in Both Systems . . . . . . . . . . . .  13

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  13

Chapter 9.  Lack of Adapted Services, Adapted Equipment, a

Parenting Techniques in Child Welfare and Family Court . . . . . . . . . . . .  13

Communication Adaptation Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140

Adaptations and Assessments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 140

Lack of Adaptation Expertise Linked to Exaggeration of Needs . . . . . . . . 142

Avoiding Bias Regarding Adaptive Supports . . . . . . . . . . . . . . . . . . . . . . . 142

Assessment Setting Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142

Piloting Adaptations During Assessments . . . . . . . . . . . . . . . . . . . . . . . . . 143

Impact of Separation on the Natural Mutual Adaptation Process . . . . . . . 144

Adaptations During Reunification Services . . . . . . . . . . . . . . . . . . . . . . . . 144

Adaptations to Inform Visitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145

The Role of Interdisciplinary Expertise . . . . . . . . . . . . . . . . . . . . . . . . . . . . 145

Implications for Adoption and Assisted Reproductive Technologies . . . . 146

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147

Chapter 10. The Adoption Law System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

The Adoption Law System: A Brief Overview . . . . . . . . . . . . . . . . . . . . . .  15

Domestic Adoption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

International Adoption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 7
Disability Law and the Adoption System . . . . . . . . . . . . . . . . . . . . . . . . .  15

Access to the Domestic Adoption System . . . . . . . . . . . . . . . . . . . . . . . .  15

Discrimination and Bias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  15

Permissible Discrimination or Valid Defenses to the ADA? . . . . . . .  15

Patchwork Quilt of State Laws . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Ensuring Access to Domestic Adoption . . . . . . . . . . . . . . . . . . . . . . .  16

International Adoption: A Promising Alternative? . . . . . . . . . . . . . . . . . .  16

Invidious Criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Agency Discrimination and Home Studies . . . . . . . . . . . . . . . . . . . .  16

Other Barriers to International Adoption . . . . . . . . . . . . . . . . . . . . . .  16

Improving Access to International Adoption . . . . . . . . . . . . . . . . . . .  16

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  16

Chapter 11.  Assisted Reproductive Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . 

Assisted Reproductive Technologies: A Brief Overview . . . . . . . . . . . . . .  16

Disability and Reproduction: Historical Context . . . . . . . . . . . . . . . . . . . .  16

Disability Law and Assisted Reproductive Technologies . . . . . . . . . . . . .  17

Access to Assisted Reproductive Technologies . . . . . . . . . . . . . . . . . . . . .  17

Discrimination and Bias . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Financial Barriers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  17

Ensuring Access to Assisted Reproductive Technologies . . . . . . . . .  17

Assisted Reproductive Technologies as an Accommodation . . . . . . . . . .  18

ADA Duty to Provide Reasonable Accommodations . . . . . . . . . . . . .  18

United Nations Convention on the Rights of Persons 

with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Examples of Assisted Reproductive Technologies as 

Accommodations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Chapter 12. The Impact of Disability on Parenting . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Parents with Psychiatric Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  18

Parents with Intellectual or Developmental Disabilities . . . . . . . . . . . . . .  18

Parents with Physical or Sensory Disabilities . . . . . . . . . . . . . . . . . . . . . .  18

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192

8 National Council on Disability
Chapter 13.  Supporting Parents with Disabilities and Their Families 

the Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 193

Personal Assistance Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194

Housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 197

Transportation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199

Public Benefits and Poverty . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201

Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  20

Peer Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  20

Disability and Mental Health Service Providers . . . . . . . . . . . . . . . . . . . . . 210

Mental Health Service Providers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 210

Intellectual Disabilities Service Providers . . . . . . . . . . . . . . . . . . . . . . 211

Service Providers for People with Physical Disabilities, 

Blindness, or Deafness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

Early Intervention and Prevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

Protection and Advocacy System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

Chapter 14.  Promising Practices to Prevent Unnecessary Removal a

Loss of Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  21

Through the Looking Glass, Berkeley, California . . . . . . . . . . . . . . . . . . .  21

Thresholds Mothers’ Project, Chicago, Illinois . . . . . . . . . . . . . . . . . . . . .  22

Invisible Children’s Project, Orange County, New York . . . . . . . . . . . . . .  22

Family Initiatives at Employment Options, Marlborough, 

Massachusetts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Positive Parenting Resource Center at United Arc of 

Franklin and Hampshire Counties, Greenfield, Massachusetts . . . . . .  22

Ashbury House, San Francisco, California . . . . . . . . . . . . . . . . . . . . . . . .  22

Promising Models for Funding and Structure . . . . . . . . . . . . . . . . . . . . .  22

Family Support 360 Projects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Healthy Start, Australia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Chapter 15.  Remedial State and Federal Legislation of Interest . . . . . . . . . . . . . . . . 

State Legislation of Interest . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Idaho . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  22

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 9
Kansas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

California . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Efforts by Other States . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Federal Legislation of Interest: Indian Child Welfare Act . . . . . . . . . . . . .  23

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Chapter 16.  Need for Legislation to Ensure the Rights of Parents wi

Disabilities and Their Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

History of Efforts to Challenge or Defeat Laws Harmful to 

Parents with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Due Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Equal Protection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Rehabilitation Act and Americans with Disabilities Act . . . . . . . . . .  23

State Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Federal Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  23

Chapter 17. Findings and Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Appendix A. Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Appendix B.  State-By-State Analysis of Dependency Statutes a

Their Inclusion of Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  26

Appendix C. Model Legislation (State or Federal) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Appendix D. Proposed ADA Amendment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  31

10 National Council on Disability
List of Acronyms

AACWA Adoption Assistance and Child Welfare Act

AAMC Association of American Medical Colleges

ABA American Bar Association

ACF Administration for Children and Families (HHS)

ACL Administration for Community Living (HHS)

ADA Americans with Disabilities Act—1990

ADAAA ADA Amendments Act—2008 

ADLs activities of daily living 

AFCARS Adoption and Foster Care Analysis and Reporting System

AHRQ Agency for Healthcare Research and Quality

AI American Indian 

AIDD Administration on Intellectual and Developmental Disabilities

AN Alaskan Native

APA American Psychological Association

ART assisted reproductive technologies

ASD autism spectrum disorder

ASFA Adoption and Safe Families Act—1997

ASRM American Society for Reproductive Medicine

CAPTA Child Abuse Prevention and Treatment Act—1974

CASCW Center for Advanced Studies in Child Welfare

CBPA competence-based parenting assessment

CDC Centers for Disease Control and Prevention

CI Office of Children’s Issues (Bureau of Consular Affairs, Department of State)

CIL Center for Independent Living

CMS Centers for Medicare and Medicaid Services

CPS child protective services

CRPD Convention on the Rights of Persons with Disabilities

DD developmental disability

DME durable medical equipment

DOJ Department of Justice

DOL Department of Labor

DOT Department of Transportation

ED Department of Education

EI early intervention

EHS Early Head Start

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 11
ETA Employment and Training Administration (DOL)

FTA Federal Transit Administration (DOT)

GAO Government Accountability Office 

HHS Department of Health and Human Services

HIV human immunodeficiency virus

HS Head Start

HUD Department of Housing and Urban Development

IADLs instrumental activities of daily living 

ICAMA Interstate Compact on Adoption and Medical Assistance

ICDR Interagency Committee on Disability Research 

ICPC Interstate Compact on the Placement of Children

ICWA Indian Child Welfare Act—1978 

ID intellectual disability

IDEA Individuals with Disabilities Education Act 

IUI intrauterine insemination

IVF in vitro fertilization 

LCME Liaison Committee on Medical Education 

MDT multidisciplinary team

MEPA Multiethnic Placement Act—1994

NA Native American 

NCANDS National Child Abuse and Neglect Data System

NCD National Council on Disability 

NIDRR National Institute for Disability and Rehabilitation Research

NIH National Institutes of Health

ODEP Office of Disability Employment Policy (DOL)

P&A Protection and Advocacy 

PAS personal assistance services

PATH Projects for Assistance in Transition from Homelessness

PHA public housing agency 

PRWORA Personal Responsibility and Work Opportunity Reconciliation Act—1996 

RFP request for proposals

RSA Rehabilitation Services Administration

SAMHSA Substance Abuse and Mental Health Services Administration

SART Society for Reproductive Technologies 

SNAP Supplemental Nutrition Assistance Program

SSA Social Security Administration

SSDI Social Security Disability Insurance 

SSI Supplemental Security Income

SSIS Social Service Information System 

12 National Council on Disability
TANF Temporary Assistance for Needy Families

TLG Through the Looking Glass

TPR termination of parental rights 

UFAS Uniform Federal Accessibility Standards

USCIS U.S. Citizenship and Immigration Services 

USDA Department of Agriculture

VA Department of Veterans Affairs

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 13
14 National Council on Disability
Executive Summary

T

he goal of this report is to advance 

understanding and promote the rights 

of parents with disabilities and their 

children. The report provides a comprehensive 

review of the barriers and facilitators people 

with diverse disabilities—including intellectual 

and developmental, psychiatric, sensory, and 

physical disabilities—experience when exercising 

their fundamental right to create and maintain 

families, as well as persistent, systemic, and 

pervasive discrimination against parents with 

disabilities. The report analyzes how U.S. 

disability law and policy apply to parents with 

disabilities in the child welfare and family law 

systems, and the disparate treatment of parents 

with disabilities and their children. Examination 

of the impediments prospective parents with 

disabilities encounter when accessing assisted 

reproductive technologies or adopting provides 

further examples of the need for comprehensive 

protection of these rights.

The fundamental right to parent without 

interference is protected by the U.S. Constitution 

and balanced by the judicially recognized 

power of the state to interfere to protect the 

well-being of its children. Factors used in both 

dependency court and family court proceedings 

to determine whether children need to become 

wards of the state and to determine which 

parent is the more competent custodian may be 

reasonable. Nonetheless, these rules have not 

been objectively or justly applied to parents with 

disabilities. 

The first half of the 20th century was plagued 

by the eugenics movement, which resulted 

in more than 30 states passing legislation 

permitting involuntary sterilization. This legislative 

trend was premised on the belief that people 

with disabilities and other “socially inadequate” 

populations would produce offspring who would 

be burdensome to society. The Supreme Court 

endorsed the legislative trend toward forced 

sterilization; as a result of these state statutes, 

by 1970 more than 65,000 Americans had been 

involuntarily sterilized. Even today, 22 years after 

the passage of the Americans with Disabilities 

Act, several states still have some form of 

involuntary sterilization law on their books. 

The power of the eugenics ideology 

persists. Women with disabilities still contend 

with coercive tactics designed to encourage 

sterilization or abortion because they are not 

deemed fit for motherhood. Equally alarming, 

a growing trend is emerging toward sterilizing 

people with intellectual or psychiatric disabilities. 

Despite this harrowing history, many 

people with disabilities still choose to become 

parents. Current research reveals that there are 

4.1 million parents with disabilities in the United 

States, roughly 6.2 percent of all American 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 15
parents with children under the age of 18. The 

rates are even higher for some subgroups of 

this population. For example, 13.9 percent of 

American Indian/Alaska Native parents and 

8.8 percent of African American parents have a 

disability. Further, 6 percent of white, 5.5 percent 

of Latino/Hispanic, and 3.3 percent of Asian/

Pacific Islander parents have a disability. Of the 

parents with disabilities, 2.8 percent have a 

mobility disability, 2.3 percent have a cognitive 

disability, 2.3 percent have a daily activity 

limitation, 1.4 percent have a hearing disability, 

and 1.2 percent have a vision disability. Because 

of the paucity of data and research on the 

prevalence of parents with disabilities, these 

statistics likely underestimate the number of 

parents with disabilities significantly.

These parents are the only distinct community 

of Americans who must struggle to retain 

custody of their children. Removal rates where 

parents have a psychiatric disability have been 

found to be as high as 70 percent to 80 percent; 

where the parent has an intellectual disability, 

40 percent to 80 percent. In families where the 

parental disability is physical, 13 percent have 

reported discriminatory treatment in custody 

cases. Parents who are deaf or blind report 

extremely high rates of child removal and loss 

of parental rights. Parents with disabilities are 

more likely to lose custody of their children 

after divorce, have more difficulty in accessing 

reproductive health care, and face significant 

barriers to adopting children.

Clearly, the legal system is not protecting 

the rights of parents with disabilities and their 

children. Fully two-thirds of dependency statutes 

allow the court to reach the determination that 

a parent is unfit (a determination necessary to 

terminate parental rights) on the basis of the 

parent’s disability. In every state, disability may 

be considered in determining the best interest of 

a child for purposes of a custody determination 

in family or dependency court. In theory, a nexus 

should always be shown between the disability 

and harm to the child, so that a child is taken 

from a custodial parent only when the parent’s 

disability is creating a detriment that cannot be 

alleviated. However, this is not the reality. 

Discrimination against parents with disabilities 

is all too common throughout history, and it 

remains an obstacle to full equality for people 

with disabilities in the present. Furthermore, this 

problem is not limited to traditional categories 

of disability, such as physical or sensory 

impairments. Discrimination by legal authorities 

and in child custody proceedings against parents 

with emerging disabilities is common as well. For 

example, as improved diagnosis and expanding 

diagnostic criteria have enhanced identification 

of children and adults on the autism spectrum, 

discrimination against parents diagnosed as 

autistic has emerged as a serious and ongoing 

systemic problem. As our society recognizes 

autism and other newly identified disabilities in 

a greater percentage of the next generation, the 

percentage of the American public susceptible to 

discrimination will increase. Parents who belong 

to these groups will experience the same abuses 

of their civil rights that parents with psychiatric 

disabilities currently experience; notably, statusbased removals and deprivation of due process 

protections such as reunification services.

This report recommends actions that should 

be taken immediately to ensure the rights of 

parents with disabilities and their children. 

Whether action is taken at the state or federal 

level, as an amendment or a new law, the need 

for action could not be more timely or clear. 

16 National Council on Disability
Summary of Methodology

This report provides a comprehensive overview 

of the current state of knowledge, attitudes, and 

practices toward parents with disabilities and 

their children. The study was designed to elicit 

information from a range of stakeholders in the 

field of parenting rights of people with disabilities. 

The research methodology for the report included 

key informant interviews, informal conversations 

with parents and prospective parents with 

disabilities, and extensive desk-based document 

review. The research also included a legal analysis 

of federal disability laws and their implications for 

parents and prospective parents with disabilities, 

as well as a review of key case precedent. The 

research included a review of federal and state 

legislation concerning child welfare, family law, 

and adoption to determine the extent to which 

people with disabilities are included, to identify 

problems and gaps as they relate to parents 

and prospective parents with disabilities, and 

to identify opportunities for increasing their 

participation. Moreover, the research included 

a review of federal agencies, departments, 

centers, and offices whose missions relate to 

parents with disabilities and their children, and 

the extent to which issues related to these 

populations have been identified and focused 

upon. Finally, the research examined programs 

that currently serve parents with disabilities and 

their children.

Findings and Recommendations

FINDING 1: There are few accurate and 

comprehensive sources of information on the 

prevalence of parents with disabilities.

Despite increasing numbers of people with 

disabilities creating families, there is a paucity 

of data and research on the prevalence of 

parents with disabilities, their needs, and their 

experiences. Reasons for this lack of information 

include the lack of attention given to the needs 

and experiences of parents with disabilities and 

their families, the dearth of administrative and 

research data on parents with disabilities, and 

the lack of funding for research. Adequate policy 

development and program planning to address 

the issues and meet the needs of parents 

with disabilities and their children cannot occur 

without accurate prevalence data and more 

detailed information about the circumstances, 

goals, and needs of these families.

Recommendations

■ The Administration should issue an Executive Order establishing an Interagency 

Committee on Parents with Disabilities.

NCD recommends that the Administration issue an Executive Order establishing an 

Interagency Committee on Parents with Disabilities. Members of this committee should 

include NCD; the Department Health and Human Services (HHS), specifically the 

Administration for Community Living (ACL), including the Administration on Intellectual and 

Developmental Disabilities (AIDD) and the Administration for Children and Families (ACF); 

Department of Labor (DOL), specifically the Office of Disability Employment Policy (ODEP) 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 17
FINDING 2: The child welfare system is 

ill-equipped to support parents with 

disabilities and their families, resulting in 

disproportionately high rates of involvement 

with child welfare services and devastatingly 

high rates of parents with disabilities losing 

their parental rights.

Parents with disabilities and their children are 

overly, and often inappropriately, referred to 

child welfare services and, once involved, are 

permanently separated at disproportionately high 

rates. The children of parents with disabilities 

are removed at disproportionately high rates 

owing to a number of factors, including (1) state 

and Employment and Training Administration (ETA); Department of Justice (DOJ); Substance 

Abuse and Mental Health Services Administration (SAMHSA); Social Security Administration 

(SSA); Department of Agriculture (USDA); Department of Transportation (DOT); Centers for 

Medicare and Medicaid Services (CMS); Department of Housing and Urban Development 

(HUD); National Institute for Disability and Rehabilitation Research (NIDRR); Department 

of Education (ED); Department of Veterans Affairs (VA); and Rehabilitation Services 

Administration (RSA).

■ Congress, the Administration, and federal agencies should gather effective data on 

parents with disabilities and their families.

NCD recommends that Congress and the Administration develop initiatives to produce 

effective and comprehensive data on parents with disabilities and their families. Federal 

agencies—including but not limited to the Federal Interagency Forum on Child and Family 

Statistics, HHS, SAMHSA, SSA, USDA, CMS, VA, and HUD—should collect data on the 

parents with disabilities and the families they serve. The Centers for Disease Control and 

Prevention (CDC) should conduct a surveillance survey to determine the prevalence of 

parents with disabilities. Similarly, key systems that serve people with disabilities—such 

as state disability and veterans agencies, Centers for Independent Living, disability and 

mental health providers, and paratransit agencies—must collect data on the parental status 

of their clients/consumers.

■ Congress, the Administration, and federal agencies should fund research on parents with 

disabilities and their families.

NCD recommends that Congress appropriate funding specifically for research on parents 

with disabilities and their families. Further, NCD recommends that federal agencies such 

as the Interagency Committee on Disability Research (ICDR), AIDD, the National Institutes 

of Health (NIH), and SAMHSA emulate and collaborate with NIDRR in dedicating funding 

to research on parents with disabilities and their families, focusing on their needs and how 

best to support them. This will necessarily involve demonstration projects and evaluative 

service models.

18 National Council on Disability
statutes that include disability as grounds for 

termination of parental rights (TPR); (2) the 

disparate impact of certain provisions of the 

Adoption and Safe Families Act of 1997 (ASFA); 

(3) perceived limits on the application of the 

Americans with Disabilities Act (ADA), especially 

at the termination phase; (4) bias, speculation, 

and the “unfit parent” standard; and (5) a lack of 

training in relevant systems regarding parents 

with disabilities.

Recommendations

■ States must eliminate disability from their statutes as grounds for termination 

of parental rights and enact legislation that ensures the rights of parents with 

disabilities.

NCD recommends that states eliminate disability from their dependency statutes as 

grounds for TPR. Further, NCD recommends that all states enact legislation, in accordance 

with the language set forth in Appendix C of this report, to ensure the rights of parents with 

disabilities.

■ Congress should address the disparate treatment experienced by parents with 

disabilities by adding specific protections for parents with disabilities in the 

Adoption and Safe Families Act.

NCD recommends that Congress amend ASFA by adding specific protections for parents 

with disabilities. Specifically, language must be added to the (1) ”15/22” rule, allowing for 

additional time for parents with disabilities; and (2) the “reasonable efforts” provision to 

keep children with their parents, both to prevent or eliminate the need for removal of the 

child from the family and to make it possible for the child to return to the family following 

removal by eliminating the bypass provision (which allows states to bypass efforts to 

reunify families in certain situations) as applied to parents with disabilities and ensuring 

that child welfare agencies comply with the law and make reasonable efforts to prevent 

the removal of children and provide reunification services for parents with disabilities and 

their families.

■ Congress should address the disparate treatment experienced by parents with 

disabilities resulting from the focus on permanency by shifting funding priorities at 

the federal level so that states have a greater incentive to provide prevention and 

preservation services.

NCD recommends that Congress shift funding priorities at the federal level so that states have 

a greater incentive to provide services to families while the children are maintained in the 

home, as research has shown that in-home services are most effective, particularly for people 

with disabilities. 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 19
■ DOJ, in collaboration with HHS, should issue guidance to states (specifically child 

welfare agencies and dependency courts) on their legal obligations pursuant to the ADA.

NCD recommends that DOJ, in collaboration with HHS, issue guidance to states 

(specifically child welfare agencies and dependency courts) reinforcing their legal 

obligations pursuant to the ADA. Such guidance must address the (1) applicability of the 

ADA to TPR proceedings; (2) duty of child welfare agencies and dependency courts to 

provide reasonable accommodations to parents with disabilities; and (3) presumptions of 

parental incompetence based on disability violate the ADA.

■ HHS and DOJ should gather data on parents with disabilities and their interaction 

with child welfare and dependency court systems.

NCD recommends that HHS and DOJ collect annual data on parents with disabilities and 

their interaction with child welfare agencies and dependency courts. Such data must include 

(1) disability, (2) exact involvement, (3) services and reasonable accommodations provided, and 

(4) outcome.

■ DOJ, in collaboration with HHS, must investigate all reported allegations of child 

welfare agencies or dependency courts that violate federal disability laws and 

enforce them as appropriate.

NCD recommends that DOJ include such matters in its enforcement priorities; violations 

of parental rights must be considered violations of civil rights. HHS (which has institutional 

expertise in the functioning of the child welfare system and courts) and DOJ’s Civil 

Rights Division should collaborate to enrich investigations into alleged violations of the 

Rehabilitation Act or the ADA by these entities with respect to parents with disabilities 

and their children. This could be effected through a memorandum of understanding 

establishing a synergistic partnership (such as the interagency agreement between the 

DOJ Civil Rights Division and the Department of Transportation) or the creation of a special 

section integrating expertise from the two departments (such as the Housing and Civil 

Enforcement Section of the DOJ Civil Rights Division). 

■ The HHS Children’s Bureau should collaborate with NIDRR in funding and directing 

NIDRR’s National Center for Parents with Disabilities and Their Families.

NCD recommends that the HHS Children’s Bureau collaborate with NIDRR in funding and 

directing NIDRR’s National Center for Parents with Disabilities and Their Families. NIDRR 

has funded such centers since 1990, with regular competition for awards every three to 

five years. The added funding and direction would allow the National Center to develop 

additional knowledge and provide additional technical assistance to federal, state, and local 

agencies and tribes to improve outcomes for families with parents with disabilities in the 

child welfare and family court systems.

20 National Council on Disability
FINDING 3: Parents with disabilities who are 

engaged in custody or visitation disputes in 

the family law system regularly encounter 

discriminatory practices.

Parents with disabilities who are seeking or 

defending custody or visitation rights often 

encounter a family law system that is riddled with 

practices that discriminate against them. Such 

practices include (1) a system that is pervaded 

with bias; (2) inconsistent state laws, many 

that overtly discriminate against parents with 

disabilities, others that fail to protect them from 

unsupported allegations that they are unfit or 

create a detrimental impact on their children 

solely on the basis of presumption or speculation 

regarding the parental disability; and (3) a lack of 

expertise or even familiarity regarding parents 

with disabilities and their children.

Recommendations

■ Family court professionals—including judges, attorneys, and evaluation personnel—

should receive training related to parenting with a disability.

NCD recommends that all family court professionals—including judges, attorneys, and 

evaluation personnel— receive training on a regular basis on parents with disabilities and 

their children. This training should be a mandatory component of continuing education 

requirements for such professionals.

■ DOJ should issue guidance to family courts on their legal obligations pursuant to the ADA.

NCD recommends that DOJ issue guidance to family courts, reinforcing their legal 

obligations pursuant to the ADA. Such guidance must address (1) the applicability of the 

ADA to custody and visitation proceedings; (2) the courts’ duty to provide reasonable 

accommodations to parents with disabilities; and (3) presumptions of parental 

incompetence based on disability violates the ADA.

■ States must modify their custody and visitation statutes to eliminate language that 

discriminates against parents with disabilities.

NCD recommends that states eliminate parental disability as a factor that courts can 

consider when determining the “best interest of the child” in custody and visitation disputes. 

Further, NCD recommends that all states enact legislation, in accordance with the language 

set forth in Appendix C of this report, to ensure the rights of parents with disabilities.

FINDING 4: Parents with disabilities who are 

involved in dependency or family proceedings 

regularly face evidence regarding their 

parental fitness that is developed using 

inappropriate and unadapted parenting 

assessments. Resources are lacking to provide 

adapted services and adaptive parenting 

equipment, and to teach adapted parenting 

techniques.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 21
Parents with disabilities who are involved in 

dependency or family proceedings regularly 

face (1) evidence regarding their parental 

fitness that is developed using inappropriate 

and unadapted parenting assessments; and (2) a 

national dearth of resources to provide adapted 

services and adaptive parenting equipment, and 

to teach adapted parenting techniques. Even 

when such resources exist, dependency and 

family courts do not often use them.

Recommendations

■ State statutes, rules of court, and professional standards must require that parenting 

assessments are fully accessible to parents with disabilities.

NCD recommends that state statutes, rules of court, and professional standards require 

evaluators to thoroughly investigate whether they are in compliance with the 2012 American 

Psychological Association’s Guidelines for Assessment of and Intervention With Persons 

With Disabilities, and whether they need to modify the evaluation process or incorporate 

parenting adaptations to provide a more valid, reliable assessment of a parent’s capacities in 

the context of child welfare and child custody cases. Such standards must require adapted 

naturalistic observations—for instance, in the parent’s modified home setting rather than in 

an unfamiliar setting—instead of leaving the venue for observation open to the evaluator’s 

discretion; must require explicit evidentiary support for statements about a parent’s capacity; 

and must prohibit the use of speculation and global diagnostic or disability labels as grounds 

for limiting custody or visitation. Professional standards must address the problem of 

using standardized testing to assess parenting capacity in parents with disabilities. Further, 

evaluators must use tools that have been developed specifically to assess the capabilities 

and needs of parents with disabilities, particularly intellectual and developmental disabilities, 

and should include existing and natural supports in the assessment.

■ States must mandate training for custody evaluators on parents with disabilities and 

their children.

NCD recommends that state legislatures mandate training for current custody evaluators 

to teach them the skills necessary to conduct competent disability-related custody 

evaluations. Such training must include valid methods that directly evaluate parenting 

knowledge and skills, and must consider the role of adaptations or environmental factors 

that can impede or support positive outcomes.

■ CMS must expand the definition of durable medical equipment (DME) to include 

adaptive parenting equipment.

NCD recommends that CMS expand its definition of DME to include adaptive parenting 

equipment for parents with disabilities who receive Medicaid or Medicare. 

22 National Council on Disability
FINDING 5: Prospective adoptive parents 

with disabilities face significant barriers to 

adopting children, both domestically and 

internationally.

Despite a growing need for adoptive parents, 

people with disabilities regularly encounter 

discriminatory practices that eliminate them 

solely because of their disabilities. 

Recommendations

■ DOJ should issue guidance to domestic public and private adoption agencies, as well 

as private adoption agencies engaging in international adoption on U.S. soil, regarding 

their legal obligations pursuant to the ADA.

NCD recommends that DOJ issue guidance to domestic public and private adoption 

agencies, as well as private adoption agencies engaging in international adoption on U.S. 

soil, regarding their legal obligations pursuant to the ADA. Such guidance must address the 

agencies’ duty to provide reasonable accommodations to prospective adoptive parents with 

disabilities throughout all phases of the process and state that presumptions of parental 

incompetence based on disability violate the ADA. 

■ DOJ must investigate all reported allegations of public and private adoption agencies 

violating the ADA and enforce the law as appropriate.

NCD recommends that DOJ investigate all reported allegations of domestic public 

and private adoption agencies violating the ADA and enforce the law as appropriate. 

Discrimination in the adoption process against prospective parents with disabilities must be 

considered a violation of civil rights.

■ The Department of State should dedicate resources to expanding the rights of people 

with disabilities to adopt internationally.

NCD recommends that the Office of Children’s Issues (CI), part of the Bureau of Consular 

Affairs at the Department of State, and the Department of State’s Office of the Special 

Advisor for International Disability Rights work together to expand the rights of people with 

disabilities to adopt internationally, particularly from those nations that have ratified the 

■ States should establish adaptive parenting equipment reuse and loan programs.

NCD recommends that states establish adaptive parenting equipment reuse and loan 

programs similar to the programs states now have pursuant to the Assistive Technology 

Act of 2004.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 23
FINDING 6: People with disabilities face 

significant barriers to receiving assisted 

reproductive technologies (ART), despite its 

importance for many people with disabilities 

who want to procreate.

ART can enable many people with disabilities 

to procreate who would otherwise be 

unable to do so. However, many people with 

disabilities face significant, and sometimes 

insurmountable, barriers to receiving ART. ART 

providers regularly engage in discriminatory 

practices against people with disabilities, and the 

growing costs of ART, combined with the limited 

insurance coverage for these treatments, leave 

many people with disabilities unable to afford the 

treatment.

Recommendations

■ DOJ, in collaboration with HHS, should issue guidance to ART providers on their 

legal obligations pursuant to the ADA and the Rehabilitation Act.

NCD recommends that DOJ, in collaboration with HHS, issue guidance to ART 

providers regarding their legal obligations pursuant to the ADA and the Rehabilitation 

Act. Such guidance must address the providers’ duty to provide access and reasonable 

accommodations throughout all phases of the process and must state that presumptions 

of parenting ability based on disability violate the ADA.

■ DOJ, in collaboration with HHS, must investigate all reported allegations of ART 

providers violating the ADA and the Rehabilitation Act, and enforce the law as 

appropriate.

NCD recommends that DOJ investigate all reported allegations of ADA and Rehabilitation 

Act violations by ART providers and enforce them as appropriate.

Hague Convention. Such work will require educating state and private adoption agencies 

in other countries on the capacity of people with disabilities to parent, with or without 

adaptive parenting equipment, techniques, or supportive services.

■ Adoption agency staff must undergo training on how to fully assess prospective 

parents with disabilities.

NCD recommends that adoption agency staff who are responsible for evaluating prospective 

adoptive parents or conducting home studies to assess fitness for adoptive placement be 

provided with training regarding parents with disabilities, adaptive equipment, techniques, 

and supportive services. 

24 National Council on Disability
FINDING 7: Personal assistance services 

(PAS) are a crucial support for many people 

with disabilities but usually may not be used to 

assist them with their parenting activities.

PAS are a crucial support for more than 13.2 million 

people with disabilities. They help people with 

disabilities with activities of daily living (ADLs, such 

as eating, bathing, dressing, and toileting) and 

with instrumental activities of daily living (IADLs, 

such as grocery shopping, cooking, and cleaning). 

Cost is undoubtedly the most significant barrier 

for parents with disabilities who need PAS. They 

face significant challenges because no government 

program assists them in caring for their nondisabled 

children. PAS are considered beyond the purview 

of assistance that may be provided as they do 

not assist the people with disabilities themselves. 

Other Western nations provide this service to 

consumers, successfully funding and implementing 

the program in a variety of ways. PAS oriented 

Recommendation

■ CMS must expand its definition of ADLs to include parenting activities.

NCD recommends that CMS expand its definition of ADLs to include parenting activities so 

that funded PAS can help consumers with their parenting responsibilities.

■ HHS must issue guidance to ART providers on treating patients with disabilities and 

make training available on parenting capacity.

NCD recommends that HHS—collectively the ACL, CDC, NIH, Office for Civil Rights, and the 

Office of the Surgeon General—issue guidance to ART providers on treating patients with 

disabilities and their legal obligations to provide access and reasonable accommodations. 

ART office staff responsible for evaluating prospective parents to assess fitness should 

be provided with training regarding parents with diverse disabilities, adaptive parenting 

equipment and techniques, and supportive services. 

■ ART professional organizations must issue guidance to their members on treating 

patients with disabilities.

NCD recommends that ART professional organizations, such as the Society for Reproductive 

Technologies (SART) and the American Society for Reproductive Medicine (ASRM), issue 

guidance to ART providers on treating patients with disabilities and their legal obligations to 

provide access and reasonable accommodations.

■ Medicaid and Medicare must fund ART for people with disabilities.

NCD recommends that CMS identify and implement mechanisms to pay for ART for 

Medicaid and Medicare beneficiaries with disabilities.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 25
toward parenting tasks would greatly assist parents 

with disabilities and their families. The benefits of 

PAS go beyond improving quality of life—they have 

also been found to be cost-effective.

FINDING 8: Parents with disabilities face 

significant barriers to obtaining accessible, 

affordable, and appropriate housing for their 

families.

Having a home is crucial to creating and 

maintaining a family. However, many parents 

with disabilities face significant barriers in securing 

accessible, affordable, and appropriate housing. 

Recommendations

■ HUD must require that public housing agencies (PHAs) provide at least 50 percent of 

their accessible units in family housing developments.

NCD recommends that HUD require PHAs to provide at least 50 percent of their accessible 

units in family housing developments. Such units must comply with all relevant federal 

disability access requirements and must include the same family-oriented space and 

appointments found in other units.

■ HUD should establish a national modification fund to pay for reasonable modifications 

to make private units accessible.

NCD recommends that HUD develop a national modification fund to pay for reasonable 

modifications to make private units accessible for parents with disabilities and their families. 

■ HUD should develop a program for parents with disabilities who are first-time 

homeowners.

NCD recommends HUD develop a program for parents with disabilities who are first-time 

homeowners. This program should include counseling and low-interest loans.

FINDING 9: Many parents with disabilities face 

barriers to traveling with their families using 

paratransit services.

Transportation affects all areas of the lives of 

parents with disabilities and their families—

from child care to housing to participating 

in a child’s education and meeting a child’s 

medical needs. Nevertheless, it remains one 

of the most challenging areas for many parents 

with disabilities and their families. Paratransit 

services—a support used by many parents 

with disabilities—have many barriers related to 

parents traveling with their families.

FINDING 10: Parents with disabilities have 

significantly less income and more frequently 

receive public benefits.

The financial status of parents with disabilities 

and their families is bleak. In fact, the most 

significant difference between parents with 

and without disabilities is economic. Parents 

with disabilities are more likely to receive 

26 National Council on Disability
public benefits. A recent survey found that 

52 percent of parents with disabilities receive 

Supplemental Security Income (SSI), and a 

substantial number of parents with disabilities 

and their families receive Social Security 

Disability Insurance (SSDI), Supplemental 

Nutrition Assistance Program (SNAP, commonly 

known as food stamps), and Temporary 

Assistance for Needy Families (TANF). 

Unfortunately, many parents with disabilities find 

that these programs do not adequately meet 

their families’ needs.

Recommendation

■ The Department of Transportation must issue guidance to paratransit providers on 

their legal obligations to transport parents with disabilities and their families to 

support the parenting and employment by people with disabilities.

NCD recommends that DOT issue guidance to paratransit providers that reflect its findings 

in Letter of Findings for FTA Complaint #99096 regarding their obligation to facilitate the 

use of the system by parents with disabilities and their children without additional charges 

or discriminatory conditions.

Recommendations

■ SSA must explore ways to serve SSI and SSDI beneficiaries who are parents more 

effectively.

NCD recommends that SSA begin an exploratory project to determine how to serve SSI 

and SSDI beneficiaries more effectively, focusing on ways to increase financial assistance 

to parents with disabilities and their families.

■ The HHS Administration for Children and Families (ACF) must provide additional 

supports to parents with disabilities who receive TANF. Such efforts will require 

collaboration with the Rehabilitation Services Administration (RSA) and state 

vocational rehabilitation agencies.

NCD recommends that ACF provide additional supports to parents with disabilities who 

receive TANF. Pursuant to the Personal Responsibility and Work Opportunity Reconciliation 

Act of 1996 (PRWORA), parents who receive TANF must work a specific number of hours 

(determined by the age of their children). PRWORA also imposes a five-year lifetime limit 

on assistance. Without appropriate family and work supports to overcome barriers to 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 27
Recommendations

■ The Agency for Healthcare Research and Quality (AHRQ), within its mandate to 

undertake research on priority populations, should promote research that clearly 

identifies the barriers encountered by women with disabilities who are seeking 

reproductive health care. 

NCD recommends that AHRQ, within its mandate to undertake research on priority 

populations, promote research that clearly identifies the barriers encountered by 

women with disabilities who are seeking reproductive health care. Such research 

would help disability health policy researchers and other stakeholders to paint 

an accurate picture of, for example, the extent to which reproductive health care 

technologies, facilities, and equipment remain inaccessible to women with disabilities, 

and would bolster efforts to effect change.

■ The Association of American Medical Colleges (AAMC) and the Liaison Committee 

on Medical Education (LCME) should convene a work group charged with identifying 

specific disability competencies that should be required of health care professionals 

employment, parents with disabilities, especially single mothers, may be unable to comply 

with the PRWORA/TANF regulations, resulting in a loss of benefits to families. The programs’ 

work requirements do not consider disabilities as a barrier to work. Low-paying work and lack 

of job training programs for people with disabilities are common obstacles to employment, 

and people with disabilities face significant discrimination in the hiring process, further 

hindering their ability to comply with the work requirements. Finally, some parents with 

disabilities—such as those with intellectual or developmental disabilities—may need longterm employment support, such as career planning and training. ACF must provide support to 

parents with disabilities who receive TANF, including job training, child care, and transportation. 

Such efforts will require collaboration with RSA, DOL, ODEP, ETA, and state vocational 

rehabilitation agencies.

FINDING 11: People with disabilities, 

especially women, face significant barriers to 

receiving proper reproductive health care.

Proper health care, especially reproductive 

health care, is crucial for people who want 

to create and maintain families. People 

with disabilities, particularly women, 

face significant barriers to receiving 

accessible, affordable, and appropriate 

health care.

28 National Council on Disability
FINDING 12: Parents and prospective parents 

with disabilities face a significant lack of peer 

supports.

Peer supports for parents and prospective 

parents with disabilities are important because of 

the limited availability of information on parenting 

with a disability. Parents with disabilities often 

lack positive parenting role models. Moreover, 

social isolation is a significant issue for many 

parents with disabilities, particularly parents with 

intellectual and developmental disabilities, owing 

to learning difficulties, transportation challenges, 

and discrimination by nondisabled parents. 

Peer support networks can be easily developed 

or expanded at a minimal cost and would be 

supportive for many parents.

before they graduate from medical and residency training programs, and should 

translate these competencies into specific course recommendations that can be 

adopted by medical training programs. 

NCD recommends that AAMC and LCME convene a work group charged with identifying 

specific disability competencies that should be required of health care professionals before 

they graduate from medical and residency training programs, and should translate these 

competencies into specific course recommendations that can be adopted by medical 

training programs. Competencies should include the core knowledge and skills required 

to provide appropriate health care to people with diverse disabilities, as well as general 

awareness of reproductive health care issues and concerns of women with disabilities. 

Such training should also address parenting with a disability.

■ DOJ, in collaboration with HHS, must increase its monitoring and enforcement of the 

ADA and Section 504 of the Rehabilitation Act for health care facilities and programs.

NCD recommends that DOJ, in collaboration with HHS, increase its monitoring and 

enforcement of the ADA and Section 504 of the Rehabilitation Act for health care facilities 

and programs. DOJ must focus additional resources on compliance monitoring and 

investigation of Title III complaints concerning programmatic access violations of the ADA 

and Section 504 by health care providers.

■ CMS must identify and implement mechanisms to pay for comprehensive 

preconception care for Medicaid and Medicare beneficiaries with disabilities.

NCD recommends that CMS identify and implement mechanisms to pay for comprehensive 

preconception care for Medicaid and Medicare beneficiaries with disabilities.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 29
FINDING 13: Social service providers 

regularly overlook the parenting role of their 

consumers.

Disability, mental health, child welfare, 

housing, transportation, and other service 

providers play a significant role in the lives of 

many people with disabilities. The services 

these agencies provide typically overlook the 

parenting needs of the consumer or client. In 

fact, research demonstrates that the majority 

of providers have no idea which of their clients 

are parents.

Recommendation

■ Congress should appropriate funding to establish a national parenting network for 

parents with disabilities.

NCD recommends that Congress appropriate funding to establish a national parenting 

network for parents with disabilities. A primary national network should include peer 

staffing, provide peer-to-peer links, gather information, and provide links to other 

networking efforts, including those in proposed state sites. The network should maintain 

an accessible Web site and a “warm line” (during business hours) with cross-disability, 

legal, and crisis intervention expertise. Proposed state sites should include peer staffing 

and peer-to-peer networking as well as links to the national network. State sites could 

also maintain an accessible Web site and warm lines during business hours with 

cross-disability and crisis intervention expertise and links to resources in their regions. 

Additionally, peer support groups could be located in independent living centers and 

in programs that specialize in parents with disabilities or deafness. These local parent 

support groups could provide the ongoing peer connections that are important to alleviate 

isolation in communities. Collaboration among the national, state, and local services—

including training and dissemination of information—should be a priority.

Recommendations

■ Service providers must gather data on the parenting status of the people they serve.

NCD recommends that service providers under the authority of the Department of 

Education, Equal Employment Opportunity Commission, HHS, HUD, Department of the 

Interior, DOJ, and DOT gather and report annual data on the parenting status of the people 

with disabilities they serve through state and federally administered programs that include 

this population.

30 National Council on Disability
FINDING 14: Formal Individuals with 

Disabilities Education Act (IDEA) Part C Early 

Intervention (EI) programs and other non-Part 

C early intervention and prevention model 

programs are an appropriate service option 

for many children of parents with disabilities.

Early intervention and prevention model 

programs have the potential to fully 

accommodate parents with disabilities; thus, 

efforts must be made to ensure that parents 

with disabilities and their families are considered 

for services. 

Recommendation

■ The Department of Education and HHS must identify and implement mechanisms 

for Part C Early Intervention programs, other early intervention and prevention 

model programs, and Early Head Start to serve the needs of parents with disabilities 

and their families.

NCD recommends that the Department of Education and HHS identify and implement 

mechanisms for early intervention and prevention programs, including Early Head Start and 

Head Start, to serve the needs of parents with disabilities and their families. Further, early 

intervention and prevention model program service providers require education about the 

needs of parents with disabilities and their families, including how to remediate barriers to 

full participation in services.

■ States must develop and implement mechanisms that support integrated, familycentered, strengths-based care for parents with disabilities and their children.

NCD recommends that states develop and implement mechanisms to support integrated, 

family-centered, strengths-based care for parents with disabilities and their children. 

Agencies and service providers that work with parents and their families need to 

communicate and coordinate with each other. Coordination across agencies should 

facilitate the provision of more appropriate services in a more cost-effective fashion. 

Further, funding for adult and child services must be family-centered and not siloed. This 

will require a reorganization of the administration and funding of disability services to 

support the system’s capacity to respond to family needs whether the “identified client” is 

the adult or the child, and encourage a “family wraparound approach.” States will have to 

modify interagency agreements and vendor contracts to permit the inclusion of language 

and expectations for integrated, family-centered, strengths-based care for parents with 

disabilities and their children.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 31
FINDING 15: Parents with disabilities involved 

in dependency or family law proceedings face 

significant barriers to retaining effective and 

affordable legal representation.

Parents with disabilities face significant 

barriers to retaining effective and affordable 

legal representation for dependency and 

family law proceedings. Many attorneys lack 

the skills and experience to meet the needs 

of parents with disabilities. Parents with 

disabilities are often represented by courtappointed legal representatives who typically 

have excessive caseloads and little if any 

training in disability. Research demonstrates 

that attorneys who represent parents with 

disabilities in these matters often fail to 

represent the parents’ best interests; they 

may harbor stereotypes about parents with 

disabilities that can reinforce their impression 

that such cases are unwinnable, and many fail 

to understand the implications of the ADA in 

these cases.

Recommendation

■ Protection and Advocacy (P&A) agencies must establish parenting rights as a formal 

priority, and funding must be appropriated accordingly.

NCD recommends that P&A agencies establish protection of custody and parenting rights 

as a formal national priority. To that end, Congress should establish and authorize additional 

funding for P&A systems nationally to meet the legal needs of parents with disabilities and 

their children in child welfare and child custody cases.

Recommendation

■ CILs must make serving the needs of parents with disabilities a national priority and 

funding must be appropriated accordingly.

NCD recommends that CILs make serving the needs of parents with disabilities a national 

priority. To that end, Congress and RSA must appropriate additional funding to support this 

unmet need.

FINDING 16: Centers for Independent Living 

(CILs), with appropriate training, can provide 

services to parents with disabilities.

Given the breadth and importance of CILs and 

the supports they provide, with training they have 

the potential to support parents with disabilities, 

especially to advocate regarding transportation, 

housing, financial advocacy, and assistive 

technology issues, and to offer parent support 

groups.

32 National Council on Disability
FINDING 17: Despite limited funding and 

little national attention given to parents 

with disabilities and their families, a 

number of programs and support services 

have begun to emerge across the nation; 

they must be replicated nationally to 

provide consistent capacity to support 

parents with disabilities and their children.

Programs that serve the needs of parents 

with disabilities remain scarce. Nevertheless, 

despite limited funding and little national 

attention given to parents with disabilities 

and their families, a number of programs and 

support services have begun to emerge across 

the nation. Several programs show promise, 

long-term sustainable impact, and the potential 

for replication. Generally, they are small, local 

programs that are part of larger disability 

services organizations. The programs, for 

the most part, are specific disability focused, 

meaning they provide services to parents 

with a certain disability (e.g., intellectual 

disabilities or psychiatric disabilities) but not 

cross-disability. Despite their small size and 

limited focus, these programs show enormous 

potential for serving parents with disabilities. 

With greater funding, programs similar to those 

discussed in this report can grow and develop 

nationwide, and adequately serve a currently 

underserved segment of the United States: 

parents with disabilities and their families. 

Additional funding will enable these programs 

to create systems that can consistently support 

families proactively rather than approaching 

intervention through child removal and other 

punitive measures.

Recommendations

■ Congress, the Administration, and federal agencies should fund the development of 

state multidisciplinary teams (MDTs) to support parents with disabilities and their 

children.

NCD recommends that multidisciplinary programs be established in each state. Moreover, 

funding must be available for MDTs to train and facilitate collaboration among relevant 

professional communities, systems, and organizations to increase regional capacity to 

serve parents with disabilities and their families. Further investigation is needed into how 

to use a more sustained and robust version of the 360 Project funding and development 

model, as well as requests for proposals, to achieve this goal preliminarily in 10 to 12 states 

while working toward a national system akin to the Healthy Start system in Australia. 

Ultimately, these projects should reflect the best of the promising practices highlighted 

here, with multidisciplinary, cross-disability, and infant mental health features to maximize 

the well-being of children with parents who have disabilities. 

■ Congress, the Administration, and federal agencies should fund research to analyze 

existing policies, guidelines, performance standards, and data collection practices of 

national organizations serving parents with disabilities and their families.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 33
Recommendations

■ The Health and Human Services Administration for Native Americans, ACF Native 

Affairs Work Group, and Intra-Departmental Council on Native American Affairs member 

agencies should create a task force to investigate and secure funding for research 

concerning the impact of disability on familial integrity in Indian Country.

NCD recommends that these interrelated entities create a task force to investigate 

the impact of parental and extended family caregiver disability and its associated legal 

and social implications for preserving AI/AN families; identify the barriers to conducting 

research with this population; and procure funding for such research. In many child welfare 

cases involving Indian children, the parents have disabilities; the inability or unwillingness 

of child welfare systems to meaningfully accommodate these families represents an endrun around ICWA, defeating the spirit and power of the legislation at a time of great peril 

for AI/AN communities. 

■ Pursuant to §805 of the Native Americans Program Act of 1975, this same task force 

should procure funding for pilot projects to develop supports for AI/AN parents and 

extended family caregivers with disabilities and thereby support family integrity in 

Indian Country.

NCD recommends that these interrelated entities create a research task force to 

investigate how best to develop the capacity to deliver the supports AI/AN parents 

and extended family caregivers require to care for their children and prevent entry 

NCD recommends that Congress, the Administration, and federal agencies fund research 

specifically to analyze the existing policies, guidelines, performance standards, and data 

collection practices of national organizations serving parents with disabilities and their 

families.

FINDING 18: The impact of disability on the 

integrity of American Indian/Alaskan Native 

(AI/AN) families has been utterly neglected by 

professionals in the fields of law, policy, and 

research. 

This issue has been neglected despite these 

communities having twice the disability rate of 

the general population and a tragic history of 

government-sponsored removal of their children 

so severe that it prompted the creation of the 

Indian Child Welfare Act (ICWA).

34 National Council on Disability
into the child welfare system. These supports should be delivered through existing 

tribal and urban Indian community programs or by developing new programs. The 

community supports that can prevent entry into the child welfare system or can support 

positive outcomes in these cases are not often present in reservation or urban Indian 

communities. Funding should be procured for a cross-disability, multidisciplinary model 

program similar to the AFC 360 initiative process to allow reservation and urban Indian 

communities to maximize their cultural and social relevance and take advantage of 

their deep understanding of the functioning of their own government and social service 

delivery systems. 

■ Grants and funding should be made available under the Indian Tribal Justice Technical 

and Legal Assistance Act of 2000 to support technical assistance and training for 

tribal courts that focuses on parents with disabilities and child welfare and custody 

cases. 

NCD recommends that the Bureau of Justice Assistance, as part of DOJ’s Indian Country 

Law Enforcement Initiative, create and administer grants to support the development 

and implementation of tribal legal services training and technical assistance to the court 

programs to enhance understanding in of the capacity of parent and extended family 

caregivers with disabilities to care for minor children and the interplay of ADA and ICWA 

cases in state court proceedings involving their tribal citizens. This is important not only 

to support nonbiased outcomes in tribal courts, but to ensure that, where possible, they 

accept jurisdiction in cases where discrimination is occurring in state courts or have 

sufficient facility with this issue to withhold endorsement of “active efforts” by state child 

welfare entities where accommodation has not been provided. Existing disability and 

Native American child welfare organizations (including tribally administered organizations) 

should be encouraged to collaborate in submitting requests for proposals (RFPs) and 

developing projects to be funded. Native American disability organizations can provide 

technical information and knowledge regarding parents with disabilities and how to 

support them in their own communities; outreach for RFPs should be directed to them. 

Long-standing organizations such as the Native American Independent Living Services 

(which serves AI/AN people in New Mexico) and the Native American Disability Law 

Center (which works with the tribal communities in the Southwest) represent different 

types of Native American disability programs and are well positioned to assist both 

reservation and urban Indian communities. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 35
FINDING 20: The United Nations Convention 

on the Rights of Persons with Disabilities 

(CRPD) reinforces the rights of people 

with disabilities to create and maintain 

families.

The CRPD protects the rights of people with 

disabilities to create and maintain families in 

several Articles, particularly Articles 23 and 

25. Additionally, the CRPD reinforces the 

reproductive rights of women with disabilities.

Recommendation

■ Congress should address the disparate treatment experienced by parents with 

disabilities through legislation similar to the ICWA that will protect the rights of 

parents with disabilities and their families.

NCD recommends that Congress enact legislation similar to the ICWA, in accordance with 

the language set forth in Appendix C of this report, to protect the rights of parents with 

disabilities. Alternatively, legislative amendment of the ADA and other relevant federal acts 

governing child welfare, child custody, adoption, and assisted reproductive technologies will 

be necessary to advance the intention of the ADA at the national level. 

FINDING 19: Federal legislation, similar to the 

Indian Child Welfare Act, must be enacted to 

address the systemically disparate treatment 

faced by parents with disabilities throughout 

the country.

To fully protect the rights of parents with 

disabilities, federal legislation akin to the ICWA 

must be enacted. While the ICWA is not aimed 

at the disability community, the impetus for 

the ICWA arose from circumstances similar to 

those surrounding families with parents who 

have disabilities. Both Native Americans and 

people with disabilities are historically oppressed 

minorities who have been denied civil and 

human rights in this country. Both groups were 

systemically isolated from other sectors of 

society until midway through the last century. 

Both groups suffer extreme levels of poverty, and 

little is understood about their cultures, leading to 

stereotyping and discrimination. Most important, 

both groups have been subjected to involuntary 

sterilization programs and massive removals 

of their children. Lack of knowledge about the 

culture of Native American people and how they 

parent is very similar to lack of knowledge about 

the culture, adaptive equipment, supportive 

services, and strengths of the disability 

community and how people with disabilities 

parent. Because of this and the other similarities 

between the causes of custody loss in the 

two communities—such as poverty, illiteracy, 

bias, and discrimination—portions of the ICWA 

that provide remedy for the Native American 

community should be borrowed to strengthen 

new legislation to protect the children of parents 

with disabilities.

36 National Council on Disability
Recommendation

■ The United States should ratify the CRPD.

NCD recommends that the Senate consider and expeditiously provide its advice and 

consent to ratification of the CRPD. U.S. ratification of the CRPD would reinforce American 

leadership in disability rights and support American efforts to promote the rights of parents 

with disabilities around the world.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 37
Current research reveals that there are 4.1 million parents with 

disabilities in the United States... These parents are the only distinct 

community of Americans who must struggle to retain custody of 

their children. [

38 National Council on Disability
“Parenting knows no barrier...all it takes is love.”1

The Evolution of Parenting in the 

Disability Community

The desire to become a parent traverses all 

cultural, physical, and political boundaries.

However, for people with disabilities—including 

intellectual and developmental, psychiatric, 

sensory, and physical disabilities—this innate 

desire has long been forestalled by societal 

bias. Today, people with disabilities continue to 

encounter significant legal, medical, and familial 

resistance to their decision to become parents.2

This opposition has profound and disconcerting 

roots. 

Parenting with a Disability in the 20th 

Century

The first half of the 20th century was 

characterized by the eugenics movement, during 

which more than 30 states legalized involuntary 

sterilization.3 This legislative trend was premised 

on the belief that people with disabilities and 

other “socially inadequate” populations would 

produce offspring who would be burdensome 

to society.4 Because of these state statutes, 

more than 65,000 Americans were involuntarily 

sterilized by 1970.5

Forced sterilization gained the blessing of 

the U.S. Supreme Court in the 1927 Buck v. Bell 

decision.6 Carrie Buck was an institutionalized 

woman in Virginia who was deemed 

“feebleminded.”7 She was the daughter of a 

“feebleminded” mother who was committed 

to the same institution. At age 17, Buck became 

pregnant after being raped; her daughter Vivian 

allegedly also had an intellectual disability and 

was also deemed feebleminded.8 After the 

birth of Vivian, the institution sought to sterilize 

Buck in accordance with Virginia’s sterilization 

statute. Following a series of appeals, Virginia’s 

sterilization statute was upheld on the premise 

that it served “the best interests of the patient 

and of society.”9 Concluding this historical 

decision, Justice Oliver Wendell Holmes, Jr., 

declared, “Three generations of imbeciles are 

enough.”10

Despite receiving severe criticism, Bell

has never been overruled. In fact, in 1995, the 

Supreme Court denied the petition for certiorari of 

a woman with an intellectual disability challenging 

Pennsylvania’s involuntary sterilization statute.11

Bell was cited by a federal appeals court as 

recently as 2001, in Vaughn v. Ruoff.

12 In this case, 

the plaintiff had a “mild” intellectual disability and 

both of her children were removed by the state. 

Immediately following the birth of her second 

child, the social worker told the mother that if she 

agreed to be sterilized, her chances of regaining 

custody of her children would improve. The 

mother agreed to sterilization, but approximately 

three months later, the state informed her that it 

Chapter 1. Introducti

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 39
would recommend termination of parental rights. 

The district court found that the plaintiff had a 

protected liberty interest in the 14th Amendment 

and that the social worker’s conduct violated her 

due process rights. The judgment was affirmed 

by the U.S. Court of Appeals for the Eighth 

Circuit. However, the appeals court, citing Bell, 

acknowledged that “involuntary sterilization is not 

always unconstitutional if it is a narrowly tailored 

means to achieve a compelling government 

interest.”13

Parenting with a Disability Today: The 

Eugenics Movement’s Backdoor?

Even today, 22 years after the passage of the ADA, 

several states still have some form of involuntary 

sterilization laws on their books. A few even 

retain the original statutory language, which labels 

the targets of these procedures as possessing 

hereditary forms of “idiocy” and “imbecility,” and 

state that the best interests of society would be 

served by preventing them from procreating.14

In fact, there appears to be a growing trend 

nationally and internationally toward sterilizing 

people with intellectual or psychiatric disabilities. 

Five years ago, a nine-year-old American girl 

with developmental disabilities was forced to 

undergo a procedure to, among other things, 

stunt her growth and remove her reproductive 

organs. Since then, more than 100 families have 

reportedly subjected their disabled children to 

similar treatment, while thousands more have 

considered doing so.15

In the fall of 2011, the Massachusetts 

Department of Mental Health filed a petition to 

have the parents of a woman with a psychiatric 

40 National Council on Disability
disability appointed as temporary guardians 

for the purpose of consenting to an abortion, 

despite the fact that the woman had refused 

such a procedure, citing her religious beliefs.16

The court ordered that the woman’s parents be 

appointed as co-guardians and said she could 

be “coaxed, bribed, or even enticed ... by ruse” 

into a hospital where she would be sedated 

and an abortion would be performed. The judge 

also ordered the facility that performed the 

abortion to sterilize the woman “to avoid this 

painful situation from recurring in the future.” The 

decision was reversed on appeal. With regard to 

the sterilization order, the appeals court ruled, 

“No party requested this measure, none of the 

attendant procedural requirements has been met, 

and the judge appears to have simply produced 

the requirement out of thin air.” In overturning 

the order to terminate the pregnancy, the court 

stated, “The personal decision whether to bear 

or beget a child is a right so fundamental that it 

must be extended to all persons, including those 

who are incompetent.” The appropriate result 

of the proceedings does not erase its troubling 

genesis—a state agency that intervened to 

terminate a pregnancy on the basis of the 

disability of the pregnant woman, despite her 

objection to having an abortion.

The familial rights of people with disabilities 

appear to be declining rapidly. In 1989, 29 states 

restricted the rights of people with psychiatric 

disabilities to marry.17 Ten years later, this number 

had increased to 33.18 Further, in 1989, 23 states 

restricted the parenting rights of people with 

psychiatric disabilities; by 1999, 27 states had 

enacted restrictions. 

Unquestionably, the power of eugenics 

ideology persists. Today, women with disabilities 

contend with coercive tactics designed to 

encourage sterilization or abortions because 

they are deemed not fit for motherhood.19

Similarly, there is a pervasive myth that people 

with disabilities are either sexually unwilling 

or unable.20 According to Michael Stein, 

internationally recognized expert on disability law 

and policy, “Mainstream society’s discomfort 

with the notion of people with disabilities’ 

relational intimacy is well documented. One poll 

found that 46 percent of nondisabled people 

stated they ‘would be concerned’ if their teenage 

son or daughter dated a person with a disability, 

and 34 percent ‘would be concerned’ if a friend 

or relative married a person with a disability.”21

Stein says, “The main consequences of the 

disabled non-sexuality myth are (1) difficulty 

in the formation of intimate interpersonal 

relationships between disabled and nondisabled 

people; (2) limited awareness and availability of 

health care services to women with disabilities; 

and (3) as a corollary to the myth, severe 

misperceptions about and often prejudices 

against individuals with disabilities acting in 

parental or guardianship capacities.”22

Indeed, despite the increasing numbers of 

people with disabilities becoming parents, most 

still struggle with family, community, and social 

ambivalence about this choice.23 According to 

Corbett Joan O’Toole and Tanis Doe, international 

disability activists, “In general, with rare 

exceptions, people with disabilities do not get 

asked if they want to have children. They don’t get 

asked if they want to be sexual. The silence around 

sexuality includes their parents, their counselors, 

their teachers, and most health professionals. Yet 

these same people sometimes counsel in favor of 

involuntary sterilization.”24 Lindsay,25 a woman with 

physical and cognitive disabilities and a mother 

of two, reflects on this: “I was first discouraged 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 41
from being a mother by family and community’s 

attitudes toward sex and disability, especially by 

their belief, which I internalized, that my difference 

(my scarred face and starfish-shaped hands) made 

me ugly, and therefore less desirable.”

As Carrie Killoran, a mother with a physical 

disability, recalls, “Before I got pregnant, I was 

told by my father that it would be irresponsible 

of me to have a baby because I would be an unfit 

mother. This is the view of most of society.... On 

the contrary, I turned out to be one of the fittest 

mothers I know. The ability to be a good mother 

does not reside in the 

ability to chase around 

after a toddler, nor in 

the ability to teach 

your child how to ride 

a bike. Neither does 

it include protecting 

your child from being 

teased about her 

parent’s disability; 

all children find 

something to tease 

each other about and 

a sturdy, self-confident 

child will emerge unscathed.”26

People with disabilities face these negative 

attitudes even after becoming parents. O’Toole 

and Doe state, “If we do have a child we get 

asked if it is ours, ‘Who is the parent?’ ‘Where is 

the parent?’ or ‘Why are you holding it?’”27 When 

Jessica,28 a woman with cerebral palsy, told 

her mother that she was pregnant with twins, 

her mother responded, “Now your husband 

has three babies.” Cassandra,29 a woman with 

significant physical disabilities and a mother of 

one, frequently has strangers approach her and 

question her ability to be a parent.

According to another mother with a physical 

disability, “The most difficult preparations were 

those to mentally ready ourselves for the likely 

probability that there would be—and will always 

be—people who doubted our abilities and worth 

as parents.”30 The mother recalls, “I learned long 

ago that the stereotypes and judgments held by 

people about [my husband] and me aren’t usually 

encased in their words. It’s often what is not

said. Several of our friends were married around 

the same time we were. Almost immediately 

after our celebrations, my fellow brides would 

complain about the 

annoyance they felt 

when people peppered 

them with questions 

about when they were 

going to have a baby. 

That certainly wasn’t 

a question that people 

lined up to ask us.”31

People with 

disabilities also 

face resistance to 

procreate if their 

disability is hereditary. 

Ora Prilletensky, professor, author, and mother 

with a disability, writes:

“In addition to the myth of asexuality and 

skepticism regarding their ability to attract 

partners, women with disabilities have 

been discouraged from having children for 

a variety of other reasons. Concerns that 

they will give birth to ‘defective’ babies and 

prejudicial assumptions about their capacity 

to care for children often underpin the resistance that they may encounter. The growing 

sophistication of prenatal tests, coupled 

The ability to be a good mother does not 

reside in the ability to chase around after 

a toddler, nor in the ability to teach your 

child how to ride a bike. Neither does it

include protecting your child from being 

teased about her parent’s disability; all 

children find something to tease each 

other about and a sturdy, self-confident 

child will emerge unscathed

—Carrie Killoran

42 National Council on Disability
with societal disdain for imperfection, translates into increased pressure on all women 

to ensure the infallibility of their offspring. 

Women choosing to forgo prenatal testing 

often have to contend with the clear disapproval of their doctors and may even run the 

risk of losing their medical insurance if they 

choose to bring to term rather than abort the 

‘flawed’ (and expensive) fetus. Indeed, there 

is an estimated 80 percent rate of abortion of 

fetuses diagnosed as having a condition that 

could result in a significant disability.”32

Kathryn,33 a wheelchair user and little person, 

reports that she and her husband, who has a 

similar disability, were encouraged to adopt 

because there was a chance their child could 

have their disability. In fact, many people did not 

express happiness regarding Kathryn’s pregnancy 

until tests revealed that their baby did not have 

their disability.

Although the right to be a parent is generally 

regarded as fundamental, this right is not always 

assumed for people with disabilities. According 

to Megan Kirshbaum and Rhoda Olkin of Through 

the Looking Glass (TLG), “Parenting has been 

the last frontier for people with disabilities and 

an arena in which parents are likely to encounter 

prejudice.”34 Indeed, carrying on a shameful 

tradition of discrimination against people with 

disabilities, states continue to erect legislative, 

administrative, and judicial obstacles to impede 

people with disabilities from creating and 

maintaining families.

As discussed in this report, the rate of 

removal of children from families with parental 

disability—particularly psychiatric, intellectual, or 

developmental disability—is ominously higher 

than rates for children whose parents are not 

disabled. And this removal is carried out with 

far less cause, owing to specific, preventable 

problems in the child welfare system. Further, 

parents with disabilities are more likely to 

lose custody of their children after divorce, 

have more difficulty in accessing reproductive 

health care, and face significant barriers to 

adopting children. 

Current Data on Parents with 

Disabilities and Their Families

Parents with disabilities and their families exist 

in substantial numbers throughout the world, yet 

documentation of this population is extremely 

limited. A significant obstacle to ascertaining the 

number of parents with disabilities as well as their 

demographic characteristics is the absence of data. 

While some census data provide estimates of the 

number of people with disabilities or the number 

of parents within a given locale, almost no regional 

or national data consider the combination of these 

two characteristics.35 National estimates of the 

number of parents with disabilities are usually 

based on projections from much fewer data or 

estimated by complex extrapolations.36 Even at 

the regional or local level, most disability service 

providers fail to collect data on the number of 

parents with disabilities in their purview.37 O’Toole 

notes, “Sometimes it is the lack of questioning 

that is the genesis of the research gap.”38 Because 

of the scarcity of substantive data at the local and 

national levels, parents with disabilities remain 

mostly invisible. According to Paul Preston, 

co-director of the National Center for Parents with 

Disabilities TLG, “Erroneous assumptions about 

the low prevalence of parents with disabilities 

affect the availability of resources or the motivation 

to create new resources specifically for parents 

with disabilities and their families.”39

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 43
TLG, home to the National Center for Parents 

with Disabilities and Their Families, recently 

completed a study that gathered data on parents 

with disabilities and their families.40 Analyzing 

data from the 2010 American Community Survey, 

TLG estimates that at least 4.1 million parents 

with reported disabilities in the United States 

have children under age 18; meaning that at 

least 6.2 percent of American parents who 

have children under age 18 have at least one 

reported disability. The rates are even higher for 

some subgroups of this population; for instance, 

13.9 percent of American Indian/Alaska Native 

parents and 8.8 percent of African American 

parents have a disability. Further, 6 percent of 

white, 5.5 percent Latino/Hispanic, and 

3.3 percent of Asian/Pacific Islander parents have 

a disability. Of these parents, 2.8 percent have a 

mobility disability, 2.3 percent have a cognitive 

disability, 2.3 percent have a daily activity 

limitation, 1.4 percent have a hearing disability, 

and 1.2 percent have a vision disability. 

Another recent study conducted by TLG 

revealed significant differences in education 

and income between parents with and without 

disabilities.41 For instance, only 12.6 percent of 

parents with disabilities have college degrees, 

compared with 30.8 percent of those without 

disabilities. Further, only 76.5 percent of parents 

with disabilities have a high school diploma 

(includes people with college degrees and 

beyond), compared with 87.2 percent of those 

without disabilities. The median family income 

for parents with disabilities is $35,000, compared 

with $65,000 for parents without disabilities.

Finally, TLG estimates that at least 6.1 million 

children in the United States have parents with 

disabilities; that is 9.1 percent of children in this 

country.42

In its broadest sense, “parents with 

disabilities” also includes those who may not 

identify themselves as having a disability, such 

as a deaf parent, a parent of short stature, or a 

parent with diabetes.43 An additional population 

44 National Council on Disability
to consider is grandparents and other relatives 

who have a disability and are a child’s primary 

caretaker. According to Preston:

“In the United States, there is an especially 

rapid increase in the number of grandparents in parenting roles; a 1999 study found 

that caregiving grandparents had greater 

than 50 percent chance of having a limitation in an activity of daily living (ADL) 

compared to non-caregiving grandparents. 

Although grandparents and other relatives 

may not be legally recognized as a child’s 

‘parent,’ nonetheless these primary caregivers and their children face many of the 

same issues as families of biological and 

adoptive mothers and fathers with disabilities. Another consideration in defining this 

population is whether to exclude parents 

whose child does not live with them; this is 

an especially salient issue in that many children of parents with disabilities are inappropriately removed from their parents’ care, 

and most parents with disabilities have 

few financial and social resources to retain 

or regain custody of their children. Finally, 

non-disabled parents may develop a disability long after their children have grown 

and left home, and the impact of disability 

may not be comparable to those families in 

which the parent has had a disability prior to 

or during the early parenting years.”44

Millions of parents throughout the United 

States have disabilities, and this number is likely 

to grow as people with disabilities become 

increasingly independent and integrated into their 

communities. For instance, recent data from 

the CDC reveal that 1 in 88 children qualify for a 

diagnosis of autism spectrum disorder (ASD).45

Likewise, there has been a dramatic increase in 

the number of veterans who are returning from 

war with service-connected disabilities,46 some of 

whom may already be parents and others who will 

become parents after acquiring their disability.

Despite more and more people with 

disabilities creating families, there are few 

data and little research on the prevalence of 

parents with disabilities, their needs, and their 

experiences. Reasons for this lack of information 

include the lack of attention to the needs and 

experiences of parents with disabilities and 

their families, the lack of administrative and 

research data on parents with disabilities, and 

the lack of funding for research. Adequate policy 

development and program planning to address 

the issues and meet the needs of parents 

with disabilities and their children cannot occur 

without accurate prevalence data and more 

detailed information about the circumstances, 

goals, and needs of these families.

Fundamental Principles of Parenting 

Rights in the United States

The United States Supreme Court has avowed 

continuously and with conviction that parents’ 

rights to the care and custody of their children 

are protected under the Due Process Clause of 

the 14th Amendment. Beginning with the 

seminal 1923 decision in Meyer v. Nebraska,

47 in 

which the Court held that parents have the due 

process right to see to the education of their 

children together with the duty to give children a 

suitable education, parental rights have long been 

held as fundamental. Two years after Meyer, the 

Court, in Pierce v. Society of Sisters, ruled that 

parents have the liberty “to direct the upbringing 

and education of children under their control.”48 In 

this landmark case, the Supreme Court found, 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 45
“The child is not the mere creature of the State; 

those who nurture him and direct his destiny 

have the right, coupled with the high duty, to 

recognize and prepare him for additional 

obligations.”49 Subsequent decisions have further 

defined the contours of the law’s protections of 

parental rights.

In 1972, in Stanley v. Illinois, the Supreme 

Court struck down an Illinois statute that 

provided for removal of children born out of 

wedlock from the care of their father without a 

hearing because unwed fathers were presumed 

unfit; the Court held that parental unfitness 

may not be presumed but must be proven in 

a hearing in each 

case.50 According 

to the decision, the 

interest of a parent 

in his or her children 

“undeniably warrants 

deference and, 

absent a powerful 

countervailing 

interest, protection.”51

The Court reiterated 

the due process 

protection for parents’ rights five years later.52

In 1978, the Court, quoting its opinion in 

Prince v. Massachusetts,

53 said, “It is cardinal 

with us that ‘the custody, care and nurture of 

the child resides first with the parents, whose 

primary function and freedom include preparation 

for obligations the state can neither supply nor 

hinder.’”54

More recent Supreme Court cases have 

continued to recognize substantive due process 

protection for parents’ rights, unfailingly holding 

that the right to one’s children is more substantial 

than a property right.55 “Choices about marriage, 

family life, and the upbringing of children are 

among associational rights this Court has ranked 

as of basic importance in our society, rights 

sheltered by the 14th Amendment against the 

State’s unwarranted usurpation, disregard, or 

disrespect.”56 The Court also has noted that when 

access to justice is at issue, equal protection 

and due process concerns converge and are 

implicated.57 Specifically, in M.L.B. v. S.L.J, the 

Court held that the ability to pay should not 

determine access to justice, such access being 

protected by the equal protection clause, and that 

there are due process concerns as well about the 

essential fairness of state-ordered proceedings.58

The most recent 

Supreme Court case 

to address parental 

rights is the 2000 case 

of Troxel v. Granville, in 

which the Court ruled 

that a Washington 

state grandparentvisitation statute 

failed to respect “the 

fundamental right 

of parents to make 

decisions concerning the care, custody, and 

control of their children.”59 Citing extensive case 

precedent, the plurality decision of the Court 

declared that the right of parents to direct the 

upbringing and education of their children is a 

fundamental right. The Court also found that the 

grandparent-visitation statute did not respect the 

fundamental rights of parents, but instead gave 

preference to what the state deemed to be in the 

child’s best interest. Because of the fundamental 

nature of parental rights, the government could 

not overrule a parent’s decision simply by 

questioning that decision. Although six Supreme 

“It is cardinal with us that ‘the 

custody, care and nurture of the child 

resides first with the parents, whose 

primary function and freedom include 

preparation for obligations the state can 

neither supply nor hinder.’

—U.S. Supreme Court

Prince v. Massachusetts (1978

46 National Council on Disability
Court justices ultimately sided with the parent 

in Troxel, the Court had difficulty agreeing on the 

precise legal status of parental rights. Only four 

of the justices (one short of the five required for 

a majority) agreed in the opinion that parental 

rights were fundamental, implied rights protected 

by the Constitution.

Thus, despite the conclusion that the 

substantive liberty interest of parents requires 

strict scrutiny of any government intervention 

into the family,60 Justice O’Connor’s plurality 

opinion in Troxel does not apply strict scrutiny.61

In his concurrence, Justice Thomas stated 

that the Court must apply strict scrutiny to 

any infringement of the constitutional rights 

of parents.62 In another concurrence, Justice 

Souter recognized the due process protection 

of parents’ rights but did not adopt Justice 

Thomas’s strong stance regarding strict scrutiny.63

Therefore, despite the recognition of substantive 

due process protection of parental rights, it 

appears that intervention by the government 

into family life is not subject to strict scrutiny. 

Given that differential treatment of people with 

disabilities is also not subject to strict scrutiny,64

parents with disabilities may not seek strict 

scrutiny of state decisions to interfere in the lives 

of their families. 

Attorney Dave Shade, in his 1998 Law & 

Equity article, wrote, “The right to establish 

a home and raise children is among the most 

basic of civil rights, long recognized as essential 

to the orderly pursuit of happiness. Cherished 

as this right may be, however, it has been 

violated, abused or just ignored for people with 

disabilities. Although persons with disabilities 

have made significant gains in recent years in 

overcoming the invidious discrimination with 

which they have long been burdened, the legal 

rights of parents with disabilities remain in 

question.”65

Dependency Law

While the freedom to parent without interference 

from the state is a fundamental right protected 

by the 14th Amendment, that right is balanced 

by the right of the state to protect its citizen 

children from harm. Indeed, the Supreme Court 

stated in Wisconsin v. Yoder et al.,66 “To be sure, 

the power of the parents ... may be subject to 

limitation ... if it appears that parental decisions 

will jeopardize the health or safety of the child, or 

have a potential for significant social burdens.”67

Under the legal doctrine of parens patriae, the 

state has a fundamental interest in protecting 

the interests of children.68 Accordingly, states 

claim the authority to protect the best interests 

of children by limiting or, under extreme 

circumstances, severing the parents’ rights.69

Typically, “extreme circumstances” involve 

instances of child abuse and neglect. 

As early as 1839, in upholding the removal of a 

child from her parents’ custody, the Pennsylvania 

Supreme Court recognized a tension between 

parental rights and the state’s interest in 

protecting its childrens’ welfare: “The right of 

parental control is a natural, but not an inalienable 

one. It is not accepted by the declaration of rights 

out of the subjects of ordinary legislation; and 

it consequently remains subject to the ordinary 

legislative power.”70

The Supreme Court has affirmed that while 

the state may completely dissolve the parentchild relationship without the parent’s consent, 

the state must comply with standards of 

due process. For instance, when states have 

attempted to terminate parental rights solely 

on the basis of ascribed status, the Supreme 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 47
Court has intervened. In 1972, in Stanley v. 

Illinois,

71 the Court held that both due process 

and equal protection dictated that Illinois could 

not terminate an unwed father’s rights to his 

children before a hearing on his parental fitness. 

In contending that the plaintiff must receive an 

individual hearing, the Court articulated at least 

one limitation on the state’s power to terminate 

parental rights: The state must prove unfitness 

through individual inquiry rather than through 

presumptions based on ascribed status. Arguably, 

this reasoning must also be applied in decisions 

vis-à-vis the termination of parental rights on the 

basis of disability.

In 1981, the Court directly addressed the 

issue of termination of parental rights, stating 

that termination is “a unique kind of deprivation” 

and that a “parent’s interest in the accuracy 

and justice of the decision to terminate his or 

her parental status is, therefore, a commanding 

one.”72 Conversely, the Court noted that “the 

State has an urgent interest in the welfare 

of the child.”73 The question before the Court 

was whether indigent parents have a right to 

appointed counsel in termination proceedings, 

and the answer was that there is no absolute 

right to counsel in these proceedings, but there 

may be a right to counsel depending on the 

circumstances of the case and the due process 

implications of those circumstances.74

One year later, in 1982, in Santosky v. 

Kramer,

75 the Court avowed that the state 

must overcome a strong presumption against 

termination because “the child and his parents 

share a vital interest in preventing erroneous 

termination of their natural relationship.”76 The 

Court held that before terminating a parent’s 

rights, the state must prove parental unfitness 

by clear and convincing evidence; if this burden 

cannot be met, the child must remain with his 

or her parents.77 Moreover, even where the 

parent-child relationship appears to be strained or 

problematic, natural parents enjoy a fundamental 

liberty interest in rearing their children: “The 

fundamental liberty interest of natural parents in 

the care, custody, and management of their child 

does not evaporate simply because they have 

not been model parents or have lost temporary 

custody of their child to the State.”78

In 1973, Congress took the first steps toward 

enacting federal legislation to address the issue 

of child abuse. The Child Abuse Prevention and 

Treatment Act (CAPTA), passed in 1974, required 

states “to prevent, identify and treat child abuse 

and neglect.”79

Shortly thereafter, in 1978, the ICWA was 

passed80 in response to concerns that Native 

American children were being separated 

from their tribes and placed in foster care at 

disproportionately high rates.81 

In 1980, Congress passed the Adoption 

Assistance and Child Welfare Act (AACWA), 

Public Law 96-272, in an attempt to drastically 

reform the child welfare system in every state.82

AACWA required that “reasonable efforts” be 

made to keep children with their parents, both 

to prevent or eliminate the need for removal 

of the child from his or her family, and to 

make it possible for the child to return to his 

or her family following removal.83 The primary 

objective of AACWA was to respond to the 

needs of children in foster care and to promote 

permanency through reunification or adoption.84

However, many professionals in the field, like 

Laureen D’Ambra, found that this resulted in 

the unintended interpretation by many states 

as “reasonable efforts at all costs.”85 While 

programs worked to preserve or reunite many 

48 National Council on Disability
families, AACWA failed relative to permanency 

planning.86 AACWA did not provide a specific 

definition of “reasonable efforts,” nor did HHS 

promulgate formal regulations and guidance.87

Further, AACWA failed to establish time frames 

for completing the reunification process, and 

automatic mandates were not enacted for filing 

TPR cases when parents’ conduct was not 

beneficial to efforts to reunify.88 This vagueness 

convinced many, including Senator Mike DeWine 

of Ohio, that “some, some of the tragedies in 

the child welfare system are the unintended 

consequence of a small part of [the Child Welfare 

Act].”89 More pointedly, Senator DeWine stated, 

“There is strong evidence to suggest that, in 

practice, reasonable efforts have become many 

times, extraordinary efforts—efforts to keep 

families together at all costs.”90

On November 19, 1997, President Bill Clinton 

signed the Adoption and Safe Families Act 

of 1997, Public Law 105-89, promoting child 

safety, permanency, and well-being.91 Through 

ASFA, Congress sought to strengthen the child 

welfare system’s response to a child’s need for 

safety and permanency at every point along 

the continuum of care.92 ASFA made safety the 

“paramount concern” in the delivery of child 

welfare services and decision making, and 

clarified when reasonable efforts to prevent 

removal or to reunify a child with his or her 

family are not required. To promote permanency, 

ASFA shortened the time frames for conducting 

permanency hearings, created a requirement 

for states to make reasonable efforts to finalize 

a permanent placement, and established time 

frames for filing petitions to terminate the 

parental rights for certain children in foster care.93

ASFA also introduced concurrent planning, which 

allows states to provide reunification efforts with 

parents while also developing a simultaneous 

plan for a permanent home for the child if 

reunification fails.94

Family Law

Family law involves a variety of domestic relation 

matters, such as marriage, divorce, domestic 

abuse, prenuptial agreements, child support, and 

child custody and visitation. This section focuses 

on family law as it relates child custody and 

visitation.

The Constitution protects the fundamental 

right to parent without interference from 

the state, and case law has established that 

unfitness must be proved before the state 

can terminate parental rights. However, when 

parents are unable to reach a custody or visitation 

agreement between themselves, it is the family 

law courts that decide child custody—without 

the constitutional mandates—based on the best 

interest of the child standard. 

Historically, American law treated children as 

chattel or property and gave strong preference to 

fathers when there was a dispute over custody.95

As society changed from an agrarian to an 

industrial base, this presumption shifted to what 

was termed the “tender years doctrine:” the 

idea that young children should be raised by their 

mothers, rather than their fathers, because of the 

nurturing nature of the mother-child relationship.96

This presumption gave way to the best interest 

of the child standard in the 1970s, in response 

to changing gender roles and the divorce 

revolution.97

Family law cases are governed by individual 

state statutes. When parents cannot reach a 

custody agreement, courts may decide custody 

on the basis of the state’s right to protect its 

citizen children from harm.98 The legal standard 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 49
courts use to determine custody is the best 

interest of the child.99 Most states have 

developed their own factors to determine which 

custody arrangement is in the best interest of 

the child. Typical factors include which parent 

best meets the physical, emotional, intellectual, 

and basic health and safety needs of the child; 

what the child wants (if the age and maturity of 

the child render an expressed desire reliable); the 

length of the current custody arrangement and 

whether it is positive; whether the alternative 

arrangement is suitable and stable; primary 

caretaking history; evidence of domestic 

violence or substance abuse; evidence of lying 

to the court about domestic violence or other 

matters; and whether either placement involves 

a significant other with a history of violence or 

dependency issues.100 The best interest analysis 

always allows for a parent’s own health to be 

considered.

Adoption Law

Adoption law, both domestic and international, 

creates the legal relationship of parent and child 

and bestows on the adoptive parents all the 

rights and responsibilities of that role.101 That is, 

adoptive parents play the same role as biological 

parents in the life of their child.102 There is no 

inherent right to adopt a child or to become 

a foster parent; unlike parenting biologically, 

parenting by adoption is not guaranteed in 

the United States Constitution or any state 

constitution.103

During the adoption process, courts and 

agencies consider a list of criteria to determine 

whether an individual or couple will be suitable 

parents for a child. Criteria typically include 

“age, religion, financial stability, emotional 

health, capacity for parenthood, physical health, 

marital status, infertility, adjustment to sterility, 

quality of the marital relationship, motives 

for adoption, attitudes toward nonmarital 

parenthood, the attitude of significant others, 

total personality, emotional maturity, and feelings 

about children.”104 “Where the couple lives and 

whether they have other children are also factors 

that agencies may consider when deciding 

among prospective adoptive families.”105 With 

international adoption, each country has its own 

criteria. 

Domestic Adoption

Domestic adoption is largely governed by state 

law, with federal laws providing overarching 

standards with which state adoption laws must 

comply.106 Massachusetts passed the first 

adoption statute in the United States.107 By 1929, 

all states had enacted similar laws, emphasizing 

the best interest of the child standard.

Domestic adoptions can be accomplished 

through many different routes, but all must 

be approved by a presiding judge.108 There are 

five types of domestic adoption in the United 

States: public agency adoptions, licensed private 

agency adoptions, independent adoptions (often 

referred to as attorney adoptions), adoptions 

through a facilitator (allowed in some states), and 

unlicensed private agency adoptions.109

Regulated by federal legislation, domestic 

adoptions often take place across state lines.110

Interstate adoptions are affected by agreements 

between the “sending” and “receiving” states. 

These agreements carry the force of law: 

namely, the Interstate Compact on Adoption and 

Medical Assistance (ICAMA) and the Interstate 

Compact on the Placement of Children (ICPC).111

Currently, 42 states participate in the ICAMA, 

which regulates and coordinates the payment of 

50 National Council on Disability
benefits to children with special needs, children 

who are adopted pursuant to an adoption 

assistance agreement, those who are adopted 

from one state by a family in another state, 

and those whose adoptive family moves from 

one state to another. The ICPC is an agreement 

among all 50 states, the District of Columbia, 

and the U.S. Virgin Islands, and is covered 

by legal statute in all states. It applies to the 

placement of minor children made from one state 

to another by public and private agencies, the 

courts, independent placers (e.g., physicians and 

attorneys), and individuals.

International Adoption

International adoption (also referred to as 

intercountry adoption) differs from domestic 

adoption in several significant ways.112 Children 

who are eligible for intercountry adoption 

must have lost their birth parents to death 

or abandonment, or the birth parents must 

prove that they are incapable of caring for the 

children.113 In some cases, children adopted 

through intercountry adoption come from 

orphanages or institutional settings.114 The 

placement process for international adoption 

underwent significant change following 

the United States’ ratification of the Hague 

Convention on Protection of Children and 

Co-operation in Respect of Inter-Country 

Adoption on April 1, 2008.115 The Hague 

Convention is “designed to protect the best 

interests of children and prevent the abduction, 

sale, and trafficking of children.”116 In the United 

States, the Department of State has overall 

responsibility for implementing the Convention, 

although the U.S. Citizenship and Immigration 

Services (USCIS) in the Department of Homeland 

Security also play a significant role.117 The United 

States is one of 85 nations that are parties to 

the Hague Convention.118 When a U.S. citizen 

wants to adopt a child from any of these nations, 

convention rules apply. In adopting a child from 

a country that is not a party to the convention, 

some rules vary.119

Purpose and Structure of Report

The purpose of this report is to comprehensively 

examine the barriers and facilitators people 

with disabilities experience in exercising their 

fundamental right to create and maintain families, 

and to highlight the persistent, systemic, and 

pervasive discrimination against parents with 

disabilities. In particular, the report analyzes how 

U.S. federal disability law and policy apply to 

parents with disabilities within the child welfare 

system and the family law system, and the 

systems’ disparate treatment of parents with 

disabilities and their children. The report examines 

the impediments prospective parents with 

disabilities encounter when they attempt to adopt 

children, either domestically or internationally, 

and when they attempt to access assisted 

reproductive technologies. 

The report is divided into 17 chapters. 

Chapter 2 lays out the research methodology 

used in the study. Chapter 3 considers 

U.S. federal disability rights laws and their 

application to parents with disabilities and 

their children. Chapter 4 analyzes the United 

Nations Convention on the Rights of Persons 

with Disabilities and its promotion of parenting 

rights. Chapter 5 examines the child welfare 

system, focusing on removal, reunification, and 

termination of parental rights. Chapter 6 explores 

parental disability and child welfare in the Native 

American community. Chapter 7 focuses on 

the family law system, specifically custody 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 51
and visitation. Chapter 8 reviews inappropriate 

and unadapted parenting assessments and 

their impact on the child welfare and family 

law systems. Chapter 9 examines the lack of 

adapted services, adapted equipment, and 

parenting techniques in child welfare and family 

court. Chapter 10 analyzes the adoption law 

system and the barriers prospective parents with 

disabilities face. Chapter 11 explores access to 

assisted reproductive technologies for people 

with disabilities. Chapter 12 focuses on the 

impact of disability on parenting. Chapter 13 

considers various opportunities for supporting 

parents with disabilities and their children. 

Chapter 14 reviews promising practices to 

prevent the unnecessary removal and loss of 

children. Chapter 15 examines remedial state 

and federal legislation of interest. Chapter 16 

proposes federal and state legislation to address 

the systemic and pervasive discrimination 

that parents with disabilities and their children 

regularly encounter. The report concludes by 

setting forth recommendations that will ensure 

the rights of people with disabilities to create 

and maintain families, and support them in their 

endeavors to do so.

52 National Council on Disability
I

n the development of a comprehensive 

overview of the current state of knowledge, 

attitudes, and practices toward parents with 

disabilities and their children, NCD undertook 

a variety of activities to collect and evaluate 

information for the report.

An extensive desk-based document review 

was undertaken to examine scholarly literature, 

journal articles, studies, commentaries, 

conference proceedings, popular newspapers 

and magazines, Web sites and blogs, and other 

materials related to parents with disabilities and 

their families. NCD consulted primary sources—

including electronic databases, federal agency 

resources, and a variety of academic journals—

and spoke with key informants who identified 

specific reports and related documents. 

Semistructured key informant telephone or 

in-person interviews were conducted with 22 

subject matter experts concerned with parents 

with disabilities and their children. Informants 

included social science researchers, advocates, 

and service providers. All the persons identified 

and interviewed had expertise in this field.

In addition to the key informant interviews, 

informal interviews were conducted with 13 

people with disabilities, 12 who are parents 

and 1 who is trying to create a family through 

assisted reproductive technologies. These 

interviews were completed via telephone, 

email, or instant messaging, depending on the 

needs and preferences of the interviewees. 

Pseudonyms are used throughout the report to 

ensure anonymity. Vignettes were provided by 

TLG. Collectively, these stories exemplify the 

experiences of parents with diverse disabilities 

and their children.

NCD summarized the applicability, 

effectiveness, and impact of the Americans with 

Disabilities Act and the Rehabilitation Act on 

parents with disabilities and their children, and 

conducted a review of key cases under each law 

and their impact.

NCD reviewed the federal and state legislation 

concerning child welfare, family law, and adoption 

to determine the extent to which people with 

disabilities are included, to identify problems 

and gaps as they relate parents and prospective 

parents with disabilities, and to identify 

opportunities for increasing their participation.

NCD identified key federal agencies, 

departments, centers, and offices whose 

missions relate to parents with disabilities and 

their children. NCD then determined the extent 

to which issues related to these populations—

including accessibility, enforcement of disability 

laws, and supports for parents with disabilities—

had been identified and addressed.

Finally, NCD identified examples of effective 

models that serve and support parents with 

Chapter 2. Research Methodolo

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 53
disabilities and their children. Programs are 

included that meet three general criteria: (1) they 

respond to specific needs that have been defined 

either by parents with disabilities or by others 

who are very familiar with the needs of parents 

with disabilities; (2) they are well established 

in terms of factors including longevity, funding, 

and institutional commitment; and (3) they 

have conducted customer satisfaction or other 

evaluations that were available for review to 

determine their effectiveness and to make 

improvements.

54 National Council on Disability
T

his chapter examines federal disability 

rights laws and provides an overview of 

their applicability to the parenting rights 

of Americans with disabilities. Specifically, the 

chapter examines the protections afforded by 

the Rehabilitation Act of 1973 and the Americans 

with Disabilities Act of 1990 and their application 

to the efforts of people with disabilities to create 

and maintain families.

Federal Disability Rights Laws: 

An Overview

The landmark ADA and its predecessor, 

the Rehabilitation Act of 1973, established 

comprehensive national mandates prohibiting 

discrimination on the basis of disability. 

Collectively, these two laws prohibit public and 

private entities from discriminating against people 

with disabilities and ensure equal opportunity to 

participate in and benefit from a wide range of 

services and programs. 

Under federal law, a person is defined as 

having a disability if he or she (a) has a physical 

or mental impairment that substantially limits 

one or more major life activities; (b) has a record 

of such impairment; or (c) is regarded as having 

such impairment.120 Pursuant to the 2008 ADA 

amendments, major life activities include but are 

not limited to seeing, walking, and learning, as well 

as the operation of major bodily functions, such 

as the reproductive system.121 The amendments 

clarify that the ADA covers people with episodic 

conditions, such as epilepsy. Today, a person 

is protected under the ADA if he or she has a 

disability that substantially limits a life activity 

when the condition is in an active state, even 

if the condition is not evident or does not limit 

a life activity at all times.122 Furthermore, public 

entities and places of public accommodation may 

not discriminate against an “individual or entity 

because of the known disability of an individual 

with whom the individual or entity is known to 

have a relationship or association.”123

Rehabilitation Act of 1973

The first federal civil rights law protecting people 

with disabilities was the Rehabilitation Act of 

1973.124 The intent of the Rehabilitation Act is 

to “Empower individuals with disabilities to 

maximize employment, economic self-sufficiency, 

independence and inclusion and integration 

into society through...the guarantee of equal 

opportunity.”125

The most well-known provision of the 

Rehabilitation Act is Section 504, which states,

“No otherwise qualified individual with a 

disability . . . Shall, solely by reason of her 

or his disability, be excluded from the participation in, be denied the benefits of, or be 

Chapter 3. Disability Law Framewo

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 55
subjected to discrimination under any program or activity receiving Federal financial 

assistance....”126

Section 504 prohibits discrimination against 

people with disabilities by programs conducted 

by federal agencies as well as any program 

or activity that receives federal financial 

assistance.127 Section 504 applies to nearly 

all public schools, public and private colleges, 

human services programs (including the child 

welfare system and adoption agencies), and 

public housing agencies. Notably, Section 504 

applies to all health care entities and providers 

that receive federal monies, including through 

Medicaid, Medicare, or federal block grants. 

The Rehabilitation Act includes other 

significant provisions as well. Section 501 

requires affirmative action and nondiscrimination 

in employment by federal agencies.128

Section 503 requires affirmative action and 

prohibits employment discrimination by federal 

government contractors and subcontractors with 

contracts of more than $10,000.129 Section 508 

requires that all electronic and information 

technology developed, maintained, procured, 

or used by the Federal Government must be 

accessible to people with disabilities, including 

employees.130

Americans with Disabilities Act

On July 26, 1990, President George W. Bush 

signed into law the Americans with Disabilities 

Act, which extended the protections and 

prohibitions of the Rehabilitation Act to private 

conduct, with the goal of reducing the social 

discrimination and stigma experienced by 

people with disabilities.131 In passing the ADA, 

Congress recognized that “historically, society 

tended to isolate and segregate individuals with 

disabilities, and, despite some improvements, 

such forms of discrimination against individuals 

with disabilities continue to be a serious and 

pervasive social problem.”132 In furtherance of the 

objective of eliminating discrimination, Congress 

stated that “the Nation’s proper goals regarding 

individuals with disabilities are to assure equality 

of opportunity, full participation, independent 

living, and economic self-sufficiency for such 

individuals.”133 In light of the ADA’s intended 

“clear and comprehensive national mandate for 

the elimination of discrimination,”134 the ADA 

ensures the rights of people with disabilities 

to create and maintain families in a variety of 

ways. Indeed, before the passage of the ADA, 

Congress gathered an unprecedented amount 

of testimony concerning discrimination against 

people with disabilities, including stories of 

people with disabilities who had lost custody of 

their children135 and people with disabilities who 

were denied the opportunity to adopt children.136

The ADA is divided into five titles that cover 

the various protections afforded by the law:

■ Title I covers employment.137

■ Title II Part A covers public entities: state 

and local government.138

■ Title II Part B covers public transportation 

provided by public entities.139

■ Title III covers private entities: public 

accommodations, commercial facilities, 

examinations and courses related to 

licensing or certification, and transportation 

provided to the public by private entities.140

■ Title IV covers telecommunications.141

■ Title V contains miscellaneous provisions.142

56 National Council on Disability
Titles II and III are most relevant here because 

they govern access to public entities run by state 

and local governments, and places of public 

accommodation, respectively.

Title II of the Americans with 

Disabilities Act

Title II of the ADA prohibits discrimination by 

public entities run or funded by state and local 

governments.143 It mandates, “No qualified 

individual with a disability shall, by reason of 

such disability, be excluded from participation 

in or be denied the benefits of the services, 

programs, or activities of a public entity, or be 

subjected to discrimination by any such entity.”144

The ADA defines public entity to include “any 

department, agency, special purpose district, 

or other instrumentality of a State or States 

or local government.”145 Examples of covered 

programs and entities include state courts, 

state legislatures, town meetings, police and 

fire departments, and state and local offices and 

programs. Entities that receive federal financial 

assistance from DOJ, including state judicial 

systems, are also prohibited from discriminating 

on the basis of disability under Section 504 of the 

Rehabilitation Act.146 Further, the Supreme Court 

has held that providing people with disabilities 

access to courts is a mandate of Title II. 

According to the Court, “Unequal treatment of 

disabled persons in the administration of judicial 

services has a long history,” which the ADA seeks 

to redress.147 Title II (and Section 504) are thus 

crucial, because they mandate access for people 

with disabilities to the child welfare system, 

family law courts, and public adoption agencies. 

Title II requires the following of public entities:

■ Public entities must provide people 

with disabilities an equal opportunity 

to participate in programs, services or 

activities.148 To implement this mandate, 

public entities must make reasonable 

modifications in policies, practices, or 

procedures unless such modifications 

would fundamentally alter the nature of the 

service, program or activity.149

■ Public entities shall administer services, 

programs, and activities in the most 

integrated setting appropriate to the 

needs of qualified individuals with 

disabilities;150

■ Public entities shall not impose or apply 

eligibility criteria that screen out or tend to 

screen out any individual with a disability 

from fully and equally enjoying any service, 

program, or activity, unless such criteria can 

be shown to be necessary for the provision 

of the service, program, or activity being 

offered;151

■ Public entities must furnish auxiliary aids 

and services when necessary to ensure 

effective communication, unless an undue 

burden or fundamental alteration would 

result;152

■ Public entities may provide benefits, 

services, or advantages, beyond those 

required by the regulation, to people with 

disabilities;153

■ Public entities may not place surcharges 

on individuals with disabilities to cover 

the costs of measures to ensure 

nondiscriminatory treatment, such as 

making necessary modifications required to 

provide program accessibility or providing 

qualified interpreters;154

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 57
■ Public entities may not deny the benefits 

of programs, activities, and services to 

individuals with disabilities because entities’ 

facilities are inaccessible.155 A public entity’s 

services, programs or activities, when viewed 

in their entirety, must be readily accessible to, 

and usable by, people with disabilities.156

Title II also requires newly constructed or 

altered facilities to comply with the ADA’s 2010 

Standards for Accessible Design (2010 Standards), 

if the start date for construction is on or after 

March 15, 2012.157 If elements in existing facilities 

already comply with corresponding elements 

in the 1991 Standards or the Uniform Federal 

Accessibility Standards (UFAS) and are not being 

altered, Title II entities are not required to make 

changes to those elements to bring them into 

compliance with the 2010 Standards.158 Under the 

“program accessibility” standard, public entities 

are not necessarily required to make each of their 

existing facilities accessible if other methods 

are effective in achieving compliance with the 

regulations.159 Instead, a public entity’s services, 

programs, or activities, when viewed in their 

entirety, must be readily accessible to, and usable 

by, people with disabilities.160

Examples of alternative methods to ensure 

accessibility include relocating a service to 

an accessible floor or facility, or providing the 

service at home. There are limits to the program 

accessibility requirement; public entities are 

not required to take any action that they can 

demonstrate would result in an “undue financial 

Patrick Cokley reads an ABC book to Jackson Cokley (age 3), while Rebecca 

Cokley, NCD Executive Director, looks on.

58 National Council on Disability
and administrative burden” or that would 

“fundamentally alter” the nature of the program, 

activity, or service.161 However, they must take 

other necessary action to ensure that people 

with disabilities receive the benefits or services 

provided by the public entity.162 Moreover, 

public entities may impose legitimate safety 

requirements necessary for the safe operation 

of services, programs, or activities.163 However, 

the public entity must ensure that its safety 

requirements are based on actual risks, not on 

mere speculation, stereotypes, or generalizations 

about people with disabilities.164 Similarly, public 

entities are not required to permit a person 

to participate in or benefit from its services, 

programs, or activities if that person poses a 

direct threat to the health or safety of others.165

In determining whether a person poses a direct 

threat, a public entity must make an individualized 

assessment, based on reasonable judgment that 

relies on current medical knowledge or on the 

best available objective evidence, to ascertain 

the nature, duration, and severity of the risk; the 

probability that the potential injury will actually 

occur; and whether reasonable modifications of 

policies, practices, or procedures or the provision 

of auxiliary aids or services will mitigate the risk.166

Title III of the Americans with 

Disabilities Act

Title III of the ADA prohibits any public 

accommodation from discriminating against 

people with disabilities by denying them access 

to the full and equal enjoyment of goods, 

services, or facilities. Public accommodations 

include all areas open to the public, including 

restaurants, stores, banks, pharmacies, legal 

offices, doctors’ offices, and hospitals. Pursuant 

to Title III, “private entities are considered public 

accommodations if the operations of such 

entities affect commerce and fall within one 

of the 12 categories set out in the statute.”167

Title III is relevant here because it unquestionably 

governs access to private adoptions, as it 

precisely includes “adoption agency” in the 

definition of public accommodations.168 Similarly, 

assisted reproductive technology providers 

must comply with Title III because they provide 

services in a health care provider’s office or 

hospital, which are included in the definition of 

public accommodations.

The purpose of Title III is to ensure that 

no person with a disability is denied goods or 

services offered to the public because of their 

disability. Under Title III, 

■ A public accommodation shall not impose or 

apply eligibility criteria that screen out or tend 

to screen out an individual with a disability 

from fully and equally enjoying any goods, 

services, facilities, privileges, advantages, or 

accommodations, unless such criteria can be 

shown to be necessary for the provision of 

such goods, services, etc.169

■ A public accommodation shall make 

reasonable modifications in policies, 

practices, or procedures when such 

modifications are necessary to ensure that 

people with disabilities have access to 

the goods, services, facilities, privileges, 

advantages, or accommodations, unless 

the public accommodation can demonstrate 

that making the modifications would 

fundamentally alter the nature of such 

goods, services, etc.170

■ A public accommodation shall take those 

steps that may be necessary to ensure that 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 59
no individual with a disability is excluded, 

denied services, segregated or otherwise 

treated differently because of the absence 

of auxiliary aids and services, unless the 

public accommodation can demonstrate 

that taking those steps would result in a 

fundamental alteration or undue burden.171

Public accommodations must also provide 

physical access for people with disabilities.172

Generally, new construction and alterations must 

comply with the 2010 Standards if the start date 

for construction is on or after March 15, 2012. A 

public accommodation must remove architectural 

barriers where such removal is readily achievable; 

that is, easily accomplished without much 

difficulty or expense.173 On or after March 15, 

2012, elements in a facility that do not comply 

with the 1991 Standards requirements for those 

elements (e.g., where an existing restaurant 

has never undertaken readily achievable barrier 

removal) must be modified using the 2010 

Standards to the extent readily achievable. The 

standards include revisions to the 1991 Standards 

as well as supplemental requirements for which 

there are no technical or scoping requirements 

in the 1991 Standards (such as swimming pools, 

play areas, marinas, and golf facilities). Public 

accommodations must comply with the 2010 

Standards’ supplemental requirements in existing 

facilities to the extent readily achievable.

Public accommodations may deny a person 

the opportunity to participate in or benefit 

from the goods, services, facilities, privileges, 

advantages, and accommodations if the person 

poses a direct threat to the health or safety 

of others.174 In determining whether a person 

poses a direct threat, a public accommodation 

must make an individualized assessment based 

on reasonable judgment that relies on current 

medical knowledge or on the best available 

objective evidence to ascertain the nature, 

duration, and severity of the risk; the probability 

that the potential injury will actually occur; and 

whether reasonable modifications of policies, 

practices, or procedures or the provision of 

auxiliary aids or services will mitigate the risk.175

Moreover, public accommodations may impose 

legitimate safety requirements that are necessary 

for safe operation.176 Safety requirements must 

be based on actual risks and not on mere 

speculation, stereotypes, or generalizations about 

people with disabilities.177

Ensuring Accessibility for the Whole 

Family

Despite the laudable requirements of the 

Rehabilitation Act and the ADA, parents with 

disabilities and their families continue to 

experience significant accessibility barriers. These 

barriers not only impede the abilities of these 

parents to fulfill their parenting responsibilities 

but also affect the entire family. 

For example, parents with disabilities regularly 

experience accessibility barriers at their childrens’ 

schools and daycare centers. In October 2006, 

TLG convened 55 representatives from the 

Bay Area to initiate the Bay Area Parents with 

Disabilities and Deaf Parents Task Force.178

According to TLG:

“Bay Area Task Force participants reiterated a 

frequent complaint of parents with disabilities 

nationally: they are excluded from active participation in their children’s school life. Typically, 

because the majority of children of disabled 

parents are not disabled, center and/or school 

administrators and teachers are unaware of 

or insensitive to the needs of parents with 

60 National Council on Disability
diverse disabilities. This can be [owing] to a 

number of factors: the physical inaccessibility 

of the center and/or school (e.g., inaccessible 

sites for a parent-teacher meeting or other 

school activities that other parents attend); 

inaccessible communication modes (e.g., no 

interpreters for deaf parents or inaccessible 

media for parents who are blind); assumptions about parents helping their children 

with homework if the materials are not in 

accessible formats. Further, because of a lack 

of education or familiarity with diverse disabilities, center and/or school officials may make 

inaccurate or negative assumptions about the 

capabilities of parents with disabilities.”179

The task force cited the following specific 

accessibility problems parents with disabilities 

encounter:

■ Parents with disabilities do not know what 

their rights are with regard to their children’s 

centers and schools.

■ Centers or school systems do not know 

what their legal obligations are with regard 

to parents with disabilities.

■ Center or school administrators and teachers 

often do not know if any of their children’s 

parents have disabilities or are deaf.

■ Communication from center or school 

personnel—in person, by phone, or 

by written communication— may be 

inaccessible or inappropriate (e.g., no 

interpreters, inaccessible formats for written 

materials, linguistically difficult information 

for parents with intellectual disabilities).

■ Information from the centers or schools 

is often not sent in a timely manner (e.g., 

a parent may need several days’ notice to 

arrange transportation or get materials in 

braille).

■ Even centers or schools that have 

classrooms/programs for children 

with disabilities may not consider the 

perspectives or needs of adults with 

disabilities or the fact that they can be 

parents.

■ If there are multiple children in the family 

or if the child changes centers or schools, 

navigating different schools or different 

school districts can be challenging.

■ Although most centers or schools include 

curricula on diverse ethnicities and 

languages, few address disabilities unless 

the focus is on children with disabilities. 

■ Deaf parents particularly noted that teachers 

inappropriately use their hearing children to 

interpret conversations between teachers 

and parents. Other parents with disabilities 

described center or school personnel who 

are visibly uncomfortable, paternalistic, or 

insensitive when talking with them.180

The parents with disabilities with whom NCD 

spoke reported encountering similar barriers. 

Christina,181 a woman with significant physical 

and sensory (vision and hearing) disabilities 

and the single mother of three children, often 

encounters difficulties trying to get her children’s 

schools to provide her with interpreters and 

materials in accessible formats. Christina also is 

frustrated that she cannot watch school football 

games with other parents because the stands 

are not wheelchair accessible. Danielle,182 a 

deaf mother, describes her experiences with 

her children’s schools as “hell,” explaining that 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 61
the school, especially the after-school program, 

refuses to provide interpreters even though she 

has sent several letters and threatened a lawsuit.

Kathryn,183 a wheelchair user and mother of 

one child, experienced significant difficulties 

finding an accessible home daycare center. After 

contacting more than 10 providers, she eventually 

found one that was willing to provide her an 

accommodation: The house is not wheelchairaccessible, but the provider meets Kathryn at her 

car and takes her daughter in. 

Jessica,184 a wheelchair user and mother 

of twins, told NCD that in addition to the 

accessibility barriers at her children’s school, 

Significant Accessibility Barriers Persist Despite Legal Requirements

Despite the requirements of the Rehabilitation Act and the ADA, parents with disabilities and 

their families continue to experience significant accessibility barriers:

■ Parents with disabilities do not know what their rights are with regard to their children’s 

centers and schools.

■ Centers or school systems don’t know what their legal obligations are with regard to 

parents with disabilities. 

■ Administrators and teachers of schools and centers often don’t know if any of their 

children’s parents have disabilities or are deaf.

■ Communication from center or school personnel may be inaccessible or inappropriate (e.g., 

no interpreters, inaccessible formats for written materials, linguistically difficult information 

for parents with intellectual disabilities).

■ Information from the centers or schools is often not sent in a timely manner (e.g., a parent 

may need several days’ notice to arrange transportation or receive materials in braille).

■ Even centers or schools that have classrooms/programs for children with disabilities may 

not consider the perspectives or needs of adults with disabilities or the fact that they can 

be parents.

■ If there are multiple children in the family or if the child changes centers or schools, 

navigating different schools or different school districts can be challenging.

■ Although most centers or schools include curricula on diverse ethnicities and languages, 

few address disabilities unless the center’s or school’s focus is on children with disabilities. 

■ Deaf parents particularly noted that teachers inappropriately use their hearing children to 

interpret conversations between teachers and parents. 

■ Other parents with disabilities described center or school personnel who are visibly 

uncomfortable, paternalistic, or insensitive when talking with them.

62 National Council on Disability
which she describes as “awful,” the lack of 

accessibility in the community significantly 

affects her ability to care for her children. 

Community accessibility problems were 

identified in a 1997 national survey of parents 

with disabilities, conducted by Linda Barker 

and Vida Maralami under a contract from 

TLG: Sixty percent of parents reported 

barriers to accessing the community.185

This survey also found significant barriers 

to employment (76 percent) and recreation 

(73 percent), presumably due, at least in part, to 

noncompliance with disability laws.186

The Rehabilitation Act and the ADA touch all 

aspects of the lives of parents with disabilities 

and their children. However, until these laws 

are fully complied with and enforced, countless 

families will continue to suffer. As Samantha,187 a 

wheelchair user and mother, said, “Society must 

shift its focus from how do we accommodate 

people with disabilities to how do we 

accommodate people with disabilities and their 

children.”

Conclusion

The proper application of federal disability rights 

laws for parents with disabilities is crucial to 

achieving and promoting the purposes and goals 

of the Rehabilitation Act and the ADA: namely, 

the full participation of people with disabilities 

in society and protection against discrimination 

that would limit such participation. Until these 

laws are properly applied and enforced, people 

with disabilities will continue to face barriers to 

exercising their fundamental right to create and 

maintain families.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 63
64 National Council on Disability
“Convinced that the family is the natural and fundamental group unit of society and is entitled to 

protection by society and the State, and that persons with disabilities and their family members 

should receive the necessary protection and assistance to enable families to contribute towards 

the full and equal enjoyment of the rights of persons with disabilities....”188

On December 13, 2006, the United 

Nations General Assembly adopted the 

Convention on the Rights of Persons 

with Disabilities (CRPD),189 which entered into 

force on May 3, 2008. The United States signed 

the CRPD on July 30, 

2009.190 The CRPD will 

enter into force in the 

United States upon 

ratification. The purpose 

of the CRPD “is to 

promote, protect and 

ensure the full and equal 

enjoyment of all human rights and fundamental 

freedoms by all persons with disabilities, and to 

promote respect for their inherent dignity.”191

The CRPD is the first legally binding 

international human rights convention 

specifically applying human rights to people with 

disabilities. It marks a paradigm shift in attitudes 

and approaches to people with disabilities 

in international instruments192 and has been 

celebrated as the “Declaration of Independence” 

for people with disabilities worldwide.193 The 

CRPD reflects the principles and aims of 

American disability laws and marks a departure 

from the traditional medical or charitable models 

of disability that are still embedded in many 

national domestic law and policy frameworks.

The CRPD recognizes 

that people with 

disabilities have rights, 

thus adopting the social 

model perspective of 

disability “as an evolving 

concept...that...results 

from the interaction 

between persons with impairments and 

attitudinal and environmental barriers that hinders 

their full and effective participation in society 

on an equal basis with others.”194 To eradicate 

these barriers, the CRPD uses the concept 

of universal design, which is defined as “the 

design of products, environments, programmes 

and services to be usable by all people, to the 

greatest extent possible, without the need for 

adaptation or specialized design.”195 The CRPD 

sets forth general principles that inform its overall 

Chapter 4.  Pursuing Parenting Rights Throu

the Convention on the Rights of Persons 

with Disabilities

 The CRPD is critical for ensuring the 

rights of people with disabilities to 

create and maintain families around 

the globe

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 65
approach and apply across the treaty: (1) dignity, 

individual autonomy including the freedom to 

make one’s own choices, and independence of 

persons; (2) nondiscrimination, participation, and 

inclusion in society; (3) respect for difference; 

(4) equality of opportunity; (5) accessibility; 

(6) equality between men and women; and 

(7) respect for the evolving capacities of children 

with disabilities.196 The CRPD clearly makes 

nondiscrimination and equal access for people 

with disabilities a human rights issue, and, with 

its enforcement, it has the power to change the 

way people with disabilities are treated around 

the world.

The CRPD is critical for ensuring the rights of 

people with disabilities to create and maintain 

families around the globe.

Respect for Home and the Family

Article 23 of the CRPD, Respect for Home and 

the Family,197 is the most relevant guarantee of 

the rights of people with disabilities to create 

and maintain families. Its provisions include the 

following:

■ States Parties shall take effective and 

appropriate measures to eliminate 

discrimination against persons with 

disabilities in all matters relating to marriage, 

family, parenthood and relationships, on an 

equal basis with others....

■ States Parties shall ensure the rights and 

responsibilities of persons with disabilities 

with regard to guardianship, wardship, 

trusteeship, adoption of children or similar 

institutions, where these concepts exist 

in national legislation; in all cases the best 

interests of the child shall be paramount. 

States parties shall render appropriate 

assistance to persons with disabilities 

in the performance of their child-rearing 

responsibilities.

■ States Parties shall ensure that a child shall 

not be separated from his or her parents 

against their will, except when competent 

authorities subject to judicial review 

determine, in accordance with applicable 

law and procedures, that such separation is 

necessary for the best interests of the child. 

In no case shall a child be separated from 

parents on the basis of disability of either 

the child or one or both of the parents.

198

As noted by Callow, Buckland, and Jones, 

“The allusion to adaptive equipment and the 

prevention of a child’s loss of her parents is 

promising for children of parents with disabilities 

around the world.”199

In addition to ensuring the rights of parents 

with disabilities and their children with regard to 

dependency and family law disputes as well as 

adoption, Article 23 addresses the reproductive 

rights of people with disabilities, which include 

access to assistive reproductive technologies. 

Specifically, Article 23 requires States Parties to 

ensure that:

■ The rights of persons with disabilities to 

decide freely and responsibly on the number 

and spacing of their children and to have 

access to age-appropriate information, 

reproductive and family planning education 

are recognized, and the means necessary

to enable them to exercise these rights are 

provided; and

■ Persons with disabilities, including children, 

retain their fertility on an equal basis with 

others.200

66 National Council on Disability
United Nations Convention on the Rights of Persons with Disabilities 

(CRPD)

The CRPD is critical for ensuring the rights of people with disabilities to create and maintain 

families around the globe:

Article 5

■ Prohibits discrimination on the basis of disability; 

■ Guarantees legal protections for people with disabilities who experience discrimination; and 

■ Requires all appropriate steps be taken to ensure that reasonable accommodations are 

provided

Article 8

■ Requires measures to raise awareness throughout society about people with disabilities 

to combat stereotypes, prejudices, and harmful practices relating to people with 

disabilities

Article 13

■ Ensures effective access to justice for people with disabilities on an equal basis with 

others.

Article 23

■ Ensures the rights of parents with disabilities and their children with regard to 

dependency and family law disputes; 

■ Ensures the rights of parents with disabilities and their children with regard to adoption; and

■ Ensures the reproductive rights of people with disabilities, which include access to 

assistive reproductive technologies.

Article 25

■ Ensures people with disabilities are provided the same range, quality, and standard of 

health care and programs, including in the area of sexual and reproductive health

Article 28

■ Requires recognition of the right of people with disabilities to an adequate standard of 

living for themselves and their families.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 67
Access to Reproductive Health

Proper health care, especially reproductive 

health care, is crucial for people who want 

to create and maintain families. In addition 

to Article 23’s advancement of respect for 

family life, Article 25 ensures the right to the 

enjoyment of the highest attainable standard 

of health without discrimination on the basis 

of disability.201 Specifically, States Parties shall 

provide people with disabilities the same range, 

quality, and standard of free or affordable 

health care and programs as provided to other 

persons, including in the area of sexual and 

reproductive health and population-based 

public health programs. Article 25 also requires 

health care professionals to provide care of 

the same quality to people with disabilities 

as to others, including on the basis of raising 

awareness of the human rights, dignity, 

autonomy, and needs of people with disabilities 

through training and the promulgation of ethical 

standards for public and private health care. 

Article 25 also prohibits discrimination against 

people with disabilities in the provision of health 

insurance and prevents discriminatory denial of 

health care or health services on the basis of 

disability. 

People with disabilities, particularly 

women, face significant barriers to receiving 

accessible, affordable, and appropriate health 

care, especially reproductive health care, 

including assisted reproductive technologies. 

Articles 25 is crucial, as people with 

disabilities receive lower standards of care 

and frequently encounter a lack of awareness 

among practitioners, despite seeking medical 

attention more regularly than people without 

disabilities. Moreover, Article 25 ensures 

that practitioners do not employ methods 

of discretionary access to reproductive 

health care, which currently occurs regularly, 

especially with regard to assisted reproductive 

technologies.

Additional Protections for Parents 

with Disabilities and Their Children

The CRPD provides extensive rights for parents 

with disabilities and their children. Parents 

with disabilities continue to face accessibility 

barriers that impede their ability to carry out 

certain parenting responsibilities. Article 5 

addresses this problem by requiring States 

Parties to prohibit discrimination on the basis of 

disability, guarantee legal protections for people 

with disabilities who are discriminated against, 

and take all appropriate steps to ensure that 

reasonable accommodations are provided.202

Moreover, parents with disabilities and 

their children face significant discrimination 

based largely on ignorance, stereotypes, and 

misconceptions. Article 8 will combat this by 

requiring States Parties to adopt immediate, 

effective, and appropriate measures to raise 

awareness throughout society about people with 

disabilities; to combat stereotypes, prejudices, 

and harmful practices relating to people with 

disabilities, including those based on sex and 

age, in all areas of life; and to promote awareness 

of the capabilities and contributions of people 

with disabilities.203 To do so, States Parties must 

initiate and maintain effective public awareness 

campaigns designed to nurture receptiveness 

to the rights of people with disabilities and 

promote positive perceptions and greater social 

awareness toward people with disabilities.204

Further, States Parties must foster at all levels of 

the education system an attitude of respect for 

the rights of people with disabilities, encourage 

68 National Council on Disability
the media to portray people with disabilities in 

a manner consistent with the purpose of the 

convention, and promote awareness training 

programs regarding people with disabilities and 

their rights.205

Article 13 addresses access to justice by 

requiring States Parties to ensure effective 

access to justice for people with disabilities on 

an equal basis with others, including through 

the provision of procedural and age-appropriate 

accommodations to facilitate their effective role 

as direct and indirect participants, including as 

witnesses, in all legal proceedings, including at 

investigative and other preliminary stages.206

Moreover, to help to ensure effective access 

to justice for people with disabilities, States 

Parties shall promote appropriate training for 

those working in the field of the administration of 

justice. As this report demonstrates, parents with 

disabilities face significant barriers to meaningful 

participation in dependency and family law 

proceedings. Article 13 will ensure their rights in 

these areas. 

Parents with disabilities and their children often 

live in poverty. Article 28 addresses this critical 

issue by requiring States Parties to recognize the 

right of people with disabilities to an adequate 

standard of living for themselves and their 

families—including adequate food, clothing, and 

housing, and to the continuous improvement of 

their living conditions. States Parties shall take 

appropriate steps to safeguard and promote the 

realization of this right without discrimination on 

the basis of disability.207 Further, States Parties 

must ensure access by people with disabilities 

and their families who live in poverty to assistance 

from the state with disability-related expenses, 

including adequate training, counseling, financial 

assistance, and respite care, as well as access to 

public housing programs. 

Furthermore, the convention contains an 

array of provisions that emphasize the need for 

States Parties to develop and make available new 

technology as a critical component of equalizing 

the rights of persons with disabilities. These 

provisions are pertinent to adaptive baby care 

equipment.

Conclusion

The domestic disability rights legal framework 

in the United States, combined with the 

nation’s ratification of the CRPD, would send a 

clear message to the international community 

that the United States is not only committed 

but remains the leader in the global effort to 

promote disability rights, nondiscrimination, and 

equality for parents with disabilities and their 

children.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 69
70 National Council on Disability
T

iffany’s tragic story highlights an all-toofamiliar situation for many parents with 

disabilities. More than two decades since 

Tiffany lost her children, parents with disabilities 

still do not fit the norms and expectations of 

the American nuclear family, and often run 

Chapter 5.  The Child Welfare System: Remova

Reunification, and Termination

Parents’ Stories: Tiffany Callo

Tiffany Callo,208 a wheelchair user with cerebral palsy, dreamed of being a mother. In 1987, 

Tiffany’s dream came true when she gave birth to her son David. Immediately following 

David’s delivery, the county’s child welfare agency asserted that Tiffany and her boyfriend, 

who also had a physical disability, could only take their son home from the hospital if 

they had a nondisabled caregiver with him at all times. Shortly after David’s birth, Tiffany’s 

relationship with her boyfriend began to deteriorate, and domestic violence ensued. 

Unable to deal with the domestic turmoil, David’s live-in caregiver moved out. David was 

immediately removed to foster care by child welfare workers. Meanwhile, Tiffany learned 

that she was again pregnant. Her second son, Jesse, was immediately removed to foster 

care by child welfare workers. Tiffany was granted limited supervised visits with David and 

Jesse while she fought with the county for custody of her children. Realizing that she would 

need some assistance to care for her sons, Tiffany requested attendant care to help her with 

parenting activities, which the county denied.

In June 1988, a custody hearing began. As evidence, the county presented a videotape 

of Tiffany slowly diapering David during a supervised home visit. The county asserted that 

the tape demonstrated Tiffany’s inability to care for her child because it documented her slow 

movements as she changed David’s diaper. This argument ignored Tiffany’s adaptive care for 

her baby, encouraging him to be patient. Expert testimony supported the mother’s behavior, 

stating that infants learn to hold still during long diapering sessions when parents support 

their patience. 

Eventually, battling with the child welfare system wore her down. David and Jesse were 

ultimately adopted by two separate families, despite assurances that they would remain 

together. Tiffany was granted a supervised annual visit with each child.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 71
afoul of presumptions and myths when they 

have to deal with the child welfare system.

Parents with disabilities and their families are 

frequently, and often unnecessarily, forced 

into the system and, once involved, lose their 

children at disproportionately high rates. This 

chapter examines the child welfare system’s 

treatment of parents with disabilities and their 

families, including state dependency statutes, 

disparities caused by inadequacies in the ASFA, 

and the perceived limitations on the application 

of the ADA. The “unfit parent” standard regularly 

applied to parents with disabilities is one of 

the major threats to people with disabilities 

who choose to parent, and presumptions 

about “fitness to parent” carve out parents 

with disabilities as a key population that must 

prove its ability to parent in American society. 

Further barriers in representation and access 

within the child welfare system compound the 

discriminatory impact on parents with disabilities 

and the consequent breakup of loving families 

that can result. 

The Child Welfare System: A Brief 

Overview

The child welfare system “is a group of services 

designed to promote the well-being of children 

by ensuring safety, achieving permanency, and 

strengthening families to care for their children 

successfully.”209 The system includes state 

child welfare agencies, the courts, private child 

welfare agencies, and other service systems 

(such as mental health, substance abuse, health 

care, education, and domestic violence).210 The 

goal of the child welfare system is laudable: 

“To promote the safety, permanency, and 

well-being of children and families.”211 The 

primary responsibility for the child welfare 

system rests with the states; however, the 

Federal Government plays a significant role in 

supporting states in the delivery of services by 

funding programs and legislative initiatives.212

The law in most states makes the child welfare 

system responsible for responding to and 

following up on allegations concerning the 

safety of and risk of harm to children in the 

community.213

The ACF at HHS is responsible for the 

administration and oversight of federal funding to 

states for child welfare services under Titles IV-B 

and IV-E of the Social Security Act.214 Two titles 

under the Social Security Act provide federal 

funding targeted specifically at foster care and 

related child welfare services. Title IV-E provides 

an open-ended entitlement for foster care 

maintenance payments to cover a portion of the 

food, housing, and incidental expenses for all 

foster children who meet certain federal eligibility 

criteria.215 Title IV-E also provides payments on 

behalf of eligible children with “special needs” 

who meet other federal eligibility criteria. Special 

needs are characteristics that can make it more 

difficult for a child to be adopted and may include 

disabilities, age, being a member of a sibling 

group, or being a member of a minority race.216

Title IV-B provides funding for child welfare 

services to foster children, as well as children 

remaining in their homes.217 Title IV-B also 

provides funding to states and eligible tribes to 

support family preservation services, communitybased family support services, time-limited 

reunification services, and adoption promotion 

and support services.218

Families typically become involved with the 

child welfare system after an allegation of abuse 

or neglect (also referred to as child maltreatment) 

is made to child protective services (CPS). CPS is 

72 National Council on Disability
a specialized part of the child welfare system.219

State laws require CPS agencies to take reports 

from people who believe a child has been abused 

or neglected; determine whether abuse or 

neglect has taken place; ensure that there is a 

plan in place to keep children safe; and provide 

services to families to ensure their children’s 

safety.220 Anyone who suspects that a child is 

being abused or neglected can call the local CPS 

to report the suspicion.221 Any member of the 

community, parents, or child victims themselves 

can initiate an allegation of suspected child 

abuse or neglect. Professionals who work with 

children or families—such as doctors, nurses, 

social workers, teachers, psychologists, and 

police officers—are “mandated reporters,” 

legally required to report suspected abuse or 

neglect.222

Once they receive a report of child 

maltreatment, CPS workers screen the allegation 

for credibility.223 A report is screened in when 

there is sufficient evidence to suggest that an 

investigation is warranted. Conversely, a report 

may be rejected for insufficient evidence or if the 

situation reported does not meet the state’s legal 

definition of abuse or neglect.224 These standards 

are in place to ensure that the state does not run 

afoul of the 14th Amendment right of parents to 

be free from state intrusion unless such intrusion 

is required to protect citizen children. 

If CPS deems the allegation credible, workers 

conduct an investigation to determine whether 

the child is safe, whether abuse or neglect 

has occurred, and whether there is a risk of it 

occurring again.225 At the end of an investigation, 

CPS workers typically conclude either that the 

allegations are substantiated and require further 

action or unsubstantiated and not worthy of 

continued investigation or action.226

The CPS agency will initiate a juvenile court 

action if it determines that a dependency 

proceeding is necessary to keep the child 

safe.227 To protect the child, the court can issue 

temporary orders placing the child in shelter care 

during the investigation, ordering services, or 

ordering certain individuals to have no contact 

with the child. At an adjudicatory hearing, the 

court hears evidence and decides whether 

maltreatment occurred and whether the child 

should be under the continuing jurisdiction of 

the court. The court then enters a disposition, 

either at that hearing or at a separate hearing, 

which may result in the court ordering a parent 

to comply with services necessary to alleviate 

the abuse or neglect. Orders can also contain 

provisions regarding visitation between the 

parent and the child, agency obligations to 

provide the parent with services, and services 

needed by the child. If a child has been abused 

or neglected, the course of action depends on 

state policy, the severity of the maltreatment, 

an assessment of the child’s immediate safety, 

the risk of continued or future maltreatment, the 

services available to address the family’s needs, 

and whether the child was removed from the 

home and a court action to protect the child was 

initiated.228

For the state to succeed in termination 

proceedings, clear and convincing evidence 

must establish that statutory grounds for 

termination have been met and termination 

must be in the best interest of the child.229

Termination of parental rights is devastating and 

final. Describing the severity and significance of 

termination of parental rights, Stephanie Gwillim, 

in her St. Louis University Public Law Review

article, said, “Termination of Parental Rights 

(TPR) is the death penalty of civil cases. Once a 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 73
parent’s rights to his or her child are terminated, 

that parent’s rights to care for, visit, or make 

decisions for the child are gone forever: the legal 

parent-child relationship has ended. The parent 

cannot seek a modification for the permanent 

custody order after his or her rights have been 

terminated. The child can immediately be put up 

for adoption and a biological parent may never 

see their child again.”230

Disability Law and the Child Welfare 

System

Both the ADA and Section 504 of the Rehabilitation 

Act (for agencies receiving federal funding) 

apply to the child welfare system. The ADA 

was passed with the intent of ensuring “full 

and equal opportunity” for Americans with 

disabilities. Undoubtedly, the ADA’s breadth and 

national mandate of eliminating disability-based 

discrimination applies to the child welfare system 

and dependency courts. Indeed, the ADA’s 

legislative history indicates a clear correlation. For 

example, during a congressional hearing, Justin 

Dart, Jr. (referred to as the “father of the ADA” 

by the disability community) testified, “We have 

clients whose children have been taken away 

from them and told to get parent information, 

but have no place to go because the services 

are not accessible. What chance do they ever 

have to get their children back?”231 Another 

witness attested, “These discriminatory policies 

and practices affect people with disabilities in 

every aspect of their lives... [including] securing 

custody of their children.”232 Echoing the need 

to eliminate discrimination faced by parents 

with disabilities, another person testified that 

“being paralyzed has meant far more than being 

unable to walk—it has meant...being deemed an 

‘unfit parent’” in custody proceedings.233 Thus, 

“The ADA’s unequivocal rejection of prejudicial 

stereotypes and inflexible policies that harm 

people with disabilities could provide an important 

basis for rethinking child welfare policy toward 

families in which at least one or more parent has 

[a disability]”.234

Because the child welfare system generally 

includes state and local agencies, Title II of the 

ADA applies.235 Accordingly, the system must 

comply with Title II’s mandate: “No qualified 

individual with a disability shall, by reason of such 

disability, be excluded from participation in or be 

denied the benefits of the services, programs, 

or activities of a public entity, or be subjected to 

discrimination by any such entity.”236

“Termination of Parental Rights (TPR) is the 

death penalty of civil cases. Once a parent’s 

rights to his or her child are terminated, that 

parent’s rights to care for, visit, or make 

decisions for the child are gone forever: the 

legal parent-child relationship has ended. 

The parent cannot seek a modification for 

the permanent custody order after his or her 

rights have been terminated. The child can 

immediately be put up for adoption and a 

biological parent may never see their child 

again.”

Stephanie N. Gwillim, “The Death Penalty of Civil Cases: 

The Need for Individualized Assessment and Judicial 

Education When Terminating Parental Rights of Mentally Ill 

Individuals,” St. Louis University Public Law Review 29 

(2009): 344.

74 National Council on Disability
Moreover, the child or children at the heart of 

the TPR proceeding qualify as a party suffering 

discrimination in accordance with the ADA 

owing to their familial association. According 

to the ADA, “A state or local government 

may not discriminate against individuals or 

entities because of their known relationship or 

association with persons who have disabilities.” 

This prohibition applies to cases where the public 

entity has knowledge of both the individual’s 

disability and his or her relationship to another 

individual or entity.246 Thus, the ADA protects the 

children of parents with disabilities involved in 

TPR proceedings.

The ADA applies to both TPR proceedings and 

reunification services. The Supreme Court has 

said, “The fact that the [ADA] can be ‘applied in 

situations not expressly anticipated by Congress 

does not demonstrate ambiguity. It demonstrates 

breadth.’”247 According to Dale Margolin, in her 

article “No Chance to Prove Themselves: The 

Rights of Mentally Disabled Parents Under the 

Americans with Disabilities Act and State Law,” 

“TPR and the ADA are inherently related: The TPR 

Pursuant to Title II, child welfare agencies must do the following:

■ Provide parents with disabilities an equal opportunity to participate in programs, services, 

and activities.237 (Agencies must make reasonable modifications in policies, practices, or 

procedures, unless such modifications would fundamentally alter the nature of the service, 

program, or activity.)238

■ Administer services, programs, and activities in the most integrated setting appropriate to 

the needs of qualified people with disabilities.239

■ Not impose or apply eligibility criteria that screen out or tend to screen out any person with 

a disability from fully and equally enjoying any service, program, or activity, unless such 

criteria can be shown to be necessary for the provision of the service, program, or activity 

being offered.240

■ Furnish auxiliary aids and services when necessary to ensure effective communication, 

unless an undue burden or fundamental alteration would result.241

■ Provide, as needed, benefits, services, or advantages beyond those required by the 

regulation to people with disabilities.242

■ Not impose surcharges on people with disabilities to cover the costs of measures to 

ensure nondiscriminatory treatment, such as making modifications required to provide 

program accessibility or providing qualified interpreters.243

■ Not deny the benefits of programs, activities, and services to people with disabilities 

because entities’ facilities are inaccessible.244

■ Provide services, programs, and activities that, when viewed in their entirety, are readily 

accessible to and usable by people with disabilities.245

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 75
involves an examination of both a person’s disability 

and the state’s implementation of services. 

Furthermore, contrary to the fears of some state 

courts, allowing a parent to assert a violation of the 

ADA does not mean that that the child’s rights will 

be compromised. The child is always the focus of 

a family court proceeding, even when the court 

is examining a potential violation of the ADA. In 

virtually every state, the ‘best interest’ of the 

child is considered during the TPR. Furthermore, a 

parent’s evidentiary attack should not be viewed as 

necessarily contrary to the interests and rights of 

a child; if a parent has been discriminated against, 

and the parent-child 

relationship is severed, in 

part or in whole, because 

of this discriminatory 

treatment, the severance 

has drastic, and potentially 

harmful, consequences 

for the child.”248

TPR proceedings 

are services, programs, and activities covered 

by the ADA, which requires that there be 

no discrimination in these proceedings 

and reasonable modifications in policies, 

practices, and procedures that affect custody 

determinations if such modifications are 

necessary to avoid discrimination on the 

basis of disability (unless the public entity can 

demonstrate that making the modifications 

would fundamentally alter the nature of the 

service, program, or activity). In fact, DOJ 

considers court actions to be “state activity” 

for purposes of the ADA and thus prohibits 

discrimination in all state judicial systems.249

Notably, the Ninth Circuit has applied Title II 

to parole proceedings, which, according to 

the court, exist to protect the public, just as 

TPRs exist to protect children.250 Reunification 

and other family preservation services should 

also be recognized as services, programs, and 

activities. In fact, federal courts have interpreted 

Title II broadly and specifically held that it applies 

to social services.251 In addition, appropriate 

reunification and preservation services to parents 

with disabilities should include relationship-based 

intervention that facilitates the development 

and experiences of infants and children. When 

parents are deprived of these services, their 

children suffer the same deprivation. 

In sum, the child welfare system must comply 

with the ADA, as well as Section 504 of the 

Rehabilitation Act as long 

as it receives any federal 

funding. Agencies may 

not discriminate on the 

basis of disability and 

must provide reasonable 

accommodations to 

appropriately serve 

parents with disabilities. 

Disparate Impact of Child Welfare 

System on Parents with Disabilities 

and Their Families

Beginning with the investigation into a report of 

child maltreatment, bias pervades the child welfare 

system, and “at any step in the process, societal 

prejudices, myths, and misconceptions may rear 

their heads.”252 Systematic discrimination by state 

courts, child welfare agencies, and legislatures 

against parents with disabilities and their families 

has taken a toll. Statistics indicate that children of 

parents with disabilities are removed from their 

parents with alarming frequency. 

Although no national study has identified 

the total number of parents with disabilities 

who have been involved in the child welfare 

system, TLG recently completed a research 

DOJ considers court actions to 

be “state activity” for purposes 

of the ADA and thus prohibits 

discrimination in all state judicial 

systems

76 National Council on Disability
study that identified the number of children in 

the child welfare system who have caregivers253

with disabilities.254 To complete this study, 

TLG analyzed data from 19 states255 that met 

a 10 percent threshold for reporting to the 

National Child Abuse and Neglect Data System 

(NCANDS), a federally sponsored national data 

collection effort created to track the volume 

and nature of child maltreatment reporting each 

year in the United States. This study found that 

29,986 victims (12.9 percent) had a caregiver 

with a reported disability: 21,543 victims 

(10.3 percent) had caregivers with a single 

disability and 5,443 victims (2.6 percent) had 

a caregiver with multiple disabilities. The race 

or ethnicity of children whose caregivers had a 

disability in the child welfare system of this study 

was as follows: white, 13,671 (50.7 percent); 

Latino/Hispanic, 4,922 (18.3 percent); African 

American, 4,255 (15.8 percent); American Indian/

Alaskan Native, 1,833 (6.8 percent); Asian/Pacific 

Islander, 179 (0.7 percent). The types of disability 

of caregivers with a single disability included 

emotional disturbance, 12,427 (6 percent); 

medical condition, 3,598 (2.2 percent); learning 

disability, 2,885 (1.9 percent); physical disability, 

1,350 (0.8 percent); intellectual disability, 726 

(0.5 percent); and visual or hearing disability, 

419 (0.2 percent). No data were available on the 

distribution of disabilities among the 2.6 percent 

of caregivers with multiple disabilities. This 

research likely greatly underestimates the 

number of caregivers with a disability, as parents 

are not routinely assessed for disability at the 

beginning of cases; even so, it demonstrates 

that involvement in the child welfare system of 

caregivers with disabilities is affecting thousands 

of children. 

Researchers at the Center for Advanced 

Studies in Child Welfare (CASCW) at the 

University of Minnesota recently completed a 

study to understand the prevalence of parental 

disability among cases of termination of parental 

rights and to assess disability disproportionality 

in TPR cases.256 Using MinnLInK data, which 

includes Minnesota state administrative data 

from multiple agencies, cases of TPR were 

identified in the Social Service Information 

System (SSIS) database in 2000–2009. Parents 

whose parental rights were terminated were 

matched to their educational records in the 

Minnesota Department of Education database. A 

parent was determined to have a disability on the 

basis of his or her record of having a disability in 

the school system. This study found the risk ratio 

for TPR for a parent with a disability label in his or 

her education records to be 3.26. In other words, 

parents who had a disability label in their school 

records are more than three times more likely 

to have TPR than parents without a disability 

label. The risk ratio for child welfare involvement 

for a parent with a disability label in his or her 

educational records is 2.37. In other words, 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 77
parents who had a disability label are more than 

twice as likely to have child welfare involvement 

than their peers without such a label. Emotional 

or behavioral disorders (60.2 percent) were the 

most common disability labels for parents with 

TPR in this study. Parents who were labeled in 

the special education database with a specific 

learning disability made up 17.3 percent of the 

sample; those with a developmental or cognitive 

disability made up 9.3 percent of the sample; 

and 13.2 percent were labeled as having other 

types of disabilities. Although this study focused 

on a limited set of Minnesota parents with 

disabilities (parents who were involved in child 

welfare whose records could be located in the 

education database), it clearly demonstrates that 

disproportionality related to parental disability 

exists in child welfare. 

Before these studies, little was known 

about what portion of child welfare populations 

comprised families with caregiver disability. 

Because child welfare agencies did not collect 

this kind of data, information at this level of detail 

was not available.257

Overall, involvement in the child welfare 

system results in increased numbers of families 

torn apart by removal of their children from 

their homes. Indeed, studies concerning the 

removal rates for parents with disabilities have 

long hinted at the significant over-involvement 

of these families with the child welfare 

system. Removal rates where parents have 

a psychiatric disability have been found to be 

as high as 70 percent to 80 percent;258 where 

the parent has an intellectual disability, the 

rates range from 40 percent to 80 percent.259

In families where the parental disability is 

physical, 13 percent have reported pathologically 

discriminatory treatment in custody cases. 

The deaf and blind communities also report 

extremely high rates of child removal and loss of 

parental rights.260

Overrepresentation is not a new 

phenomenon. A 1991 study examined more 

than 200 consecutive juvenile court cases in 

Boston and found that despite greater compliance 

with court orders, parents with intellectual 

disabilities had their children removed more 

often than parents without disabilities.261 These 

initial removals often led to TPR. This is especially 

troublesome, as parents with disabilities who are 

involved with the child protection system are more 

likely to be facing allegations of neglect than of 

abuse or risk of abuse.262

Parents of color face even more risk of 

experiencing discrimination in the child welfare 

system. As stated in the NCD report Meeting 

the Unique Needs of Minorities with Disabilities, 

“Persons with disabilities who are also members 

Disability Disproportionality in 

Child Welfare Cases in Minnesota

■ Parents who had a disability label in their 

school records are more than three times 

as likely to have termination of parental 

rights than parents without such a 

disability label.

■ Parents who had a disability label in their 

school records are more than twice as 

likely to have child welfare involvement 

than their peers without a disability label.

Center for Advanced Studies in 

Child Welfare (CASCW) at the 

University of Minnesota 

78 National Council on Disability
of minorities face double discrimination and 

a double disadvantage in our society.”263 The 

child welfare system is no exception. In 2009—

according to Children’s Rights, a national child 

welfare advocacy organization—more than half 

of the children entering foster care in the United 

States were children of color. African American 

and American Indian children are more likely 

than other children to be reported, investigated, 

substantiated, and placed in foster care. Thirtyone percent of the children in foster care are 

African American, double the percentage 

of African American children in the national 

population. Children of color, especially African 

American children 

and often American 

Indian children, are 

more likely to have 

longer placements in 

out-of-home care, are 

less likely to receive 

comprehensive services, 

and are less likely to 

reunify with their families 

than white children. 

The rates of child welfare involvement for 

African American and American Indian children 

are more than twice those of white children.264

While no available data look specifically at the 

overrepresentation of parents of color with 

disabilities and their families, presumably the 

numbers are devastatingly high.

Researchers contend that parents with 

psychiatric disabilities are overrepresented 

in the child welfare system because of the 

common stereotype that people with psychiatric 

disabilities are dangerous. According to Loran B. 

Kundra and Leslie B. Alexander in their article 

“Termination of Parental Rights Proceedings: 

Legal Considerations and Practical Strategies 

for Parents with Psychiatric Disabilities and the 

Practitioners Who Serve Them,” “As a result of 

this stereotype, it may be the case that judges 

and lawyers, upon hearing a diagnosis, will 

presume a level of dangerousness on the part of 

the parent involved in the termination of parental 

rights proceedings and will remove their children 

because of it.”265 Similarly, Diane T. Marsh found 

“that children of women with serious mental 

illness frequently enter the foster care system or, 

less commonly, are given up for adoption; that 

a majority of these parents have lost custody 

of their children; and that custody decisions 

are typically made with 

little communication 

between the mother’s 

treatment team and child 

protective services.”266

In fact, Kundra and 

Alexander note that a 

recent study found that 

parents with psychiatric 

disabilities were almost 

three times as likely to 

have child welfare involvement or child custody 

loss.267 The reasons for such targeting include 

the presence of psychiatric disability as a ground 

for termination of parental rights in many states, 

which triggers suspicion about these parents. 

In addition, many parents with psychiatric 

disabilities receive state services and are 

therefore under scrutiny. 

Similarly, parents with intellectual disabilities 

are overrepresented in the child welfare 

system and, once involved, face high rates 

of TPR. According to Chris Watkins, in his 

California Law Review article, “One result of 

the deinstitutionalization movement has been 

Researchers contend that parents 

with psychiatric disabilities are 

overrepresented in the child 

welfare system because of the 

common stereotype that people 

with psychiatric disabilities are 

dangerous

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 79
in a dramatic increase in the number of parents 

with intellectual or developmental disabilities. 

Additionally, there has been a corresponding 

increase in the number of parental rights 

termination cases involving parents with 

intellectual or developmental disabilities.”268

Paul Preston of the National Center for Parents 

with Disabilities and Their Families contends 

that this “high rate of removal reflects greater 

discrimination and lack of appropriate services 

for parents with intellectual disabilities and their 

children. In discussing the political and social 

discrimination faced by parents with intellectual 

disabilities, experts assert that parents with 

intellectual disabilities 

are often held to a higher 

standard of parenting 

than non-disabled 

parents. Negative 

expectations and 

outmoded beliefs that 

children will eventually 

be maltreated and that 

parenting deficiencies are irremediable have 

contributed to children being removed from 

parents with intellectual disabilities despite 

lack of evidence for any abuse or neglect by 

the parent.”269 Like parents with psychiatric 

disabilities, parents with intellectual disabilities 

often have frequent contact with professionals, 

including those in the government, who often 

end up being the source of a CPS referral. 

Parents with intellectual disabilities are also likely 

to be living in poverty. 

Bias pervades the child welfare system 

at every step. The disparities begin with the 

initial report of suspected abuse or neglect, 

usually to the police or CPS.270 For most parents 

without disabilities, the initial report often 

comes anonymously from a neighbor, teacher, 

or physician.271 However, because parents with 

disabilities frequently have regular contact with 

service providers, such as social workers and 

therapists, reports of suspected abuse or neglect 

may come from a state professional with whom 

the parents have had some previous contact.272

Anecdotal evidence suggests that CPS is likely 

to take allegations from state professionals more 

seriously, regardless of whether they are actually 

more valid. 

Poverty plays a significant role in bringing 

parents with disabilities into contact with 

service providers who end up being the source 

of a CPS referral, and 

poverty itself is the most 

consistent characteristic 

in families in which 

child neglect is found.273

Unlike people with the 

financial resources to 

buy services privately, 

people who live in 

poverty are likely to come to the attention of 

the state by accessing public assistance.274

Social scientists have often examined this 

phenomenon—which is referred to as 

“overexposure bias” or “visibility bias”—in 

the case of race.275 For example, “Because 

children from African American and Native 

American families are more likely to be poor, 

they are more likely to be exposed to mandated 

reporters as they turn to the public social 

service system for support in times of need. 

Problems that other families could keep private 

become public as a family receives TANF, 

seeks medical care from a public clinic, or 

lives in public housing.... Research has shown 

that exposure bias is evident at each decision 

Unlike people with the financial 

resources to buy services privately, 

people who live in poverty are likely 

to come to the attention of the state 

by accessing public assistance

80 National Council on Disability
point in the child welfare system.”276 According 

to Ella Callow, legal program director at the 

National Center for Parents with Disabilities 

and Their Families, “While people with 

disabilities have been neglected by researchers 

examining this phenomenon, the...factors 

leading to overexposure bias in the African 

American and Native American communities 

are unquestionably present in the disability 

community. Poverty and reliance on public 

assistance are, unfortunately, the most common 

characteristic of the families with disabilities we 

see who are involved in the child welfare system 

and [are] quite often the reason they ended up 

there.”277

According to Watkins, “These reports may be 

tainted by the same prejudices regarding parents 

with disabilities as are held by many members 

of society.”278 Further, once state involvement 

occurs, “Investigations are likely to be more 

probing, and investigating professionals are less 

likely to give these parents any benefit of the 

doubt.”279

In 2003, Phillip Swain and Nadine Cameron 

of the School of Social Work at the University 

of Melbourne revealed findings from a study 

that examined the experiences of parents 

with disabilities with the court system.280

Swain and Cameron’s research concluded that 

parents with disabilities experience prejudicial 

or discriminatory treatment from CPS and the 

courts.281 Commentators have characterized 

the court’s approach to child protection 

involving parents with disabilities as one of 

“risk management.”282 A false dichotomy is 

established in which the children’s rights are 

balanced against the rights of the parents.283

For example, Christina,284 who has 

significant physical and sensory (vision and 

hearing) disabilities and is the mother of three 

children, has been inappropriately referred to 

CPS on various occasions. In one instance, 

her daughter’s school reported maltreatment 

after her daughter injured herself doing 

summersaults. Although the CPS staff knew 

that Christina is hard of hearing and requires 

accessible relay services, they called her 

without the needed services, with the result 

that she could not effectively communicate. 

CPS alleged that she was being uncooperative 

and continued the investigation. The situation 

was ultimately resolved in Christina’s favor, 

but it is doubtful that it would have ever 

progressed to this level if she did not have a 

disability. 

Parents’ Stories: Christina

Christina, who has significant physical and 

sensory (vision and hearing) disabilities and 

is the mother of three children, has been 

inappropriately referred to CPS on various 

occasions. In one instance, her daughter’s 

school reported maltreatment after her 

daughter injured herself doing summersaults. 

Although the CPS staff knew that Christina is 

hard of hearing and requires accessible relay 

services, they called her without the needed 

services, with the result that she could not 

effectively communicate. CPS alleged that 

she was being uncooperative and continued 

the investigation. The situation was ultimately 

resolved in Christina’s favor, but it is doubtful 

that it would have ever progressed to this 

level if she did not have a disability.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 81
In a similar instance of “risk management,” 

Cassandra,285 a wheelchair user and mother of 

one, was inappropriately referred to CPS by her 

daughter’s pediatrician. CPS commenced an 

investigation. Cassandra had difficulty securing an 

attorney who could effectively represent her—a 

significant barrier for many parents, discussed 

later in this chapter. She eventually did find an 

attorney, and her daughter’s medical records 

refuted the allegations of neglect.

The bias that permeates the child welfare 

system has many causes. According to law 

professor Robert L. Hayman, Jr., “Neither 

the training nor time constraints permit 

many social workers to transcend biased 

perceptions. Moreover, under most schemes, 

these perceptions are enough to justify 

state intervention.”286 Many states’ child 

welfare statutes “generally require evidence 

of some connection between a parent’s 

disability and her ability to parent; however, 

the level of proof required varies from state 

to state, and within many states, from case 

to case.”287 The consequences of this bias are 

devastating. 

In fact, children have been removed from their 

families even when the evidence of neglect has 

been refuted and the court has acknowledged 

the parent’s adequacy.288 For example, in In re 

G.C.P., the Court of Appeals of Missouri upheld a 

termination order even though it acknowledged 

that there was no indication of intentional abuse 

and the alleged neglect was supported only by 

reference to substandard housekeeping.289

Parents with disabilities and their families 

are frequently, and often unnecessarily, referred 

to the child welfare system. Connie ConleyJung and Rhoda Olkin found in a study of blind 

mothers that “Mothers with disabilities feel 

vulnerable about their parental rights and the 

custodial rights of parents with disabilities are 

frequently questioned solely on the basis of 

the parents’ disabilities.”290 In fact, nearly all the 

parents with whom NCD spoke reported living 

in constant fear that they would eventually be 

reported because of their disability. Kathryn,291

a new mother who is a wheelchair user and 

little person, told NCD that she is “always 

worried that some random stranger could call 

[CPS].” Moreover, because of concern that their 

daughter’s pediatrician will question their ability 

to parent, Kathryn and her husband, who has 

similar disabilities, always take a nondisabled 

person with them to appointments.

Jessica,292 a wheelchair user and mother 

of twins, also lives in constant fear of being 

unnecessarily referred to the child welfare 

system. This fear leads her to always call her 

children’s pediatrician before going to the 

emergency room. When her children were 

newborns she was constantly worried about 

scratching them with her wedding ring when 

changing their diapers, not because it would 

Parents’ Stories: Cassandra

Cassandra, a wheelchair user and mother 

of one, was inappropriately referred to 

CPS by her daughter’s pediatrician. During 

the investigation, Cassandra had difficulty 

securing an attorney who could effectively 

represent her. She eventually did find an 

attorney, and her daughter’s medical records 

refuted the allegations of neglect.

82 National Council on Disability
cause injury but because someone would see a 

scratch and call CPS.

Danielle,293 a deaf mother, feels fortunate 

that she has not yet been reported to CPS. 

However, she acknowledges that it could easily 

happen, which leaves her constantly in fear. Dana 

has witnessed many instances in which deaf 

parents have been inappropriately referred to 

CPS; she told NCD that it is very common for the 

child welfare system to assert that the parents 

and child have no language if sign language is the 

primary language used in the home.

This pervasive fear unquestionably affects 

parenting. Susan,294 a disability activist and 

mother with an immune system disorder, told 

NCD that she hides her disability when she is 

relating to people who are involved with her 

children, because she fears being judged on her 

ability to care for her children. Lindsay, a mother 

of two children, articulates the detrimental 

effects of fear on parenting:

“Some of my fears now, as my disability 

status and identity have shifted to include 

recent psychological and cognitive impairments, are, or at least seem to me, more 

‘real.’ I am afraid of disclosing the extent of 

my brain injury (TBI) and associated multiple 

cognitive impairment (MCI) to fellow parents, teachers, and service providers, and 

have even avoided some types of medical 

services for fear of stigmatizing my kids or 

giving their father ammunition to win full 

custody of them. For example, I grapple with 

intrusive symptoms of posttraumatic stress, 

as well as suicidal ideation, largely alone, 

with much minimizing and hiding. I expend a 

lot of energy trying to cover memory loss. I 

push myself way too hard, in ways that compromise my health by promoting seizures 

and other ill effects, so that I can process.”295

This same fear leaves many parents afraid to 

ask for help. Jennifer,296 a wheelchair user and 

mother of three children, told NCD that she is 

always afraid to ask for help as someone may 

Parents’ Stories: Kathryn

Kathryn, a new mother who is a wheelchair 

user and little person, told NCD that she is 

“always worried that some random stranger 

could call [CPS].” Moreover, because of 

concern that their daughter’s pediatrician will 

question their ability to parent, Kathryn and 

her husband, who has similar disabilities, 

always take a nondisabled person with them 

to appointments.

Parents’ Stories: Danielle

Danielle, a deaf mother, feels fortunate 

that she has not yet been reported to CPS. 

However, she acknowledges that it could 

easily happen, which leaves her constantly 

in fear. Danielle has witnessed many 

instances in which deaf parents have been 

inappropriately referred to CPS; she told NCD 

that it is very common for the child welfare 

system to assert that the parents and child 

have no language if sign language is the 

primary language used in the home.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 83
view that as being unable to adequately care for 

her children and may report her to CPS.

Fear that the state will take their children 

is common among parents with disabilities. 

According to Michael Stein, internationally 

recognized disability expert, “Even with the 

accomplishment of parental tasks through 

different techniques, mothers with disabilities 

fear that mainstream society will remove their 

children because of prevailing misconceptions. 

The result is the diminishment of parental joy for 

otherwise able and loving parents.”297 Overall, 

bias pervades the child welfare system and 

disparately affects parents with disabilities. As 

Ella Callow said, “This is the only class of children 

facing loss of family integrity due not to the 

behavior of their parents, but to their parent’s 

disability status and how this is perceived and 

understood by child welfare professionals.”298

Discriminatory State Statutes

Child welfare allegations of unfitness are usually 

grounded in parental disability coupled with other 

factors, such as poverty, but the system also uses 

parental disability as a sole validating basis for 

presumed unfitness. In fact, 22 years since the 

passage of the ADA, states continue to include 

disability as grounds for TPR. Such statutes are 

examples of the oppression ADA proponents 

sought to eradicate, and they run entirely counter 

to the letter of the law, which prohibits state and 

local agencies, such as those in the child welfare 

system, from categorically discriminating on the 

basis of disability.299

In August 2005, a study revealed that 37 

states still include disability as grounds for TPR.300

Most of these state statutes use outdated and 

offensive terminology, have imprecise definitions 

of disability, and emphasize conditions rather 

than behaviors.301 Parents with disabilities who 

are involved with the child protection system are 

more likely to be facing allegations of neglect 

than of abuse or risk of abuse.302

All the states that include disability in their 

grounds for termination specify explicit types of 

disabilities for courts to consider. Currently, 

36 states list psychiatric disabilities, 32 list 

intellectual or developmental disability, 18 list 

“emotional illness,” and 7 list physical disabilities as 

grounds for TPR.303 Tennessee also uses the generic 

term “mental condition,” which can imply a 

psychiatric disability or an intellectual or 

developmental disability.304 North Carolina is the only 

state that also specifies organic brain syndrome as 

an explicit disability to consider in TPR.305 Eleven 

states use a common combination of disability 

types—“emotional illness, mental illness and mental 

deficiency”—that came directly from the Neglected 

Children Committee of the National Council of 

Juvenile Court Judges of 1976.306 For more 

information on state statutes and their inclusion of 

disability as grounds for TPR, see Appendix B.

Law professor Robert L. Hayman, Jr., said, “If 

the label is not used to help, it is inevitably used 

to hurt.”307 According to Elizabeth Lightfoot and 

Traci LaLiberte, a significant concern about the 

inclusion of disability in the grounds for TPR is 

that the mention of parental disability can shift 

Parents’ Stories: Jennifer

Jennifer, a wheelchair user and mother of 

three children, told NCD that she is always 

afraid to ask for help as someone may view 

that as being unable to adequately care for 

her children and may report her to CPS.

84 National Council on Disability
the focus from a parent’s behavior to a parent’s 

condition or diagnosis.308 No other parental 

conditions are listed in state statutes.309 In fact, 

it is explicitly laid out 

in most state statutes 

that the condition of 

poverty, for instance, 

shall not in and of 

itself be considered 

grounds for TPR.310

“However, old 

presumptions do not die 

easily, and presumptions 

of unfitness continue to subtly define the law’s 

approach to parents [with disabilities].”311 Thus, as 

Hayman says, “The formal classification should 

be abolished as a basis for state interference with 

the parent-child relationship. The classification 

has no empirical foundation, and its political roots 

are not ones to be proud of. The classification 

results, meanwhile, in a schematic processing 

of the labeled parent’s claim to family, reducing 

individualized adjudications to formalities and 

foregone conclusions. In the end, the scheme 

makes us all a little less 

human.”312 Lightfoot 

and LaLiberte note, 

“When a parent’s 

disability is explicitly 

included in legislation 

outlining the grounds for 

termination of parental 

rights, the disability 

can easily become the 

focus of a child protection case, even though the 

statutes do not say it can be the sole grounds for 

termination.”313

TPR based solely on parental disability 

clearly violates the ADA’s prohibition of decisions 

based on a person’s disability status.314 The full 

promise of the ADA will not be achieved until DOJ, 

in collaboration with HHS as appropriate, actively 

[A] significant concern about 

the inclusion of disability in the 

grounds for TPR is that the mention 

of parental disability can shift the 

focus from a parent’s behavior to a 

parent’s condition or diagnosis

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 85
enforces the ADA in child welfare matters and 

states stop denying parents with disabilities their 

fundamental right to create and maintain families.

Recurrent Barriers in Child Welfare 

Cases Involving Parents with 

Disabilities

This section examines barriers most often 

encountered by parents with disabilities when 

involved in the child welfare system, including 

barriers related to the Adoption and Safe Families 

Act; perceived limitations on the application of the 

ADA at the termination phase; bias, speculation 

and the “unfit parent” standard; and issues in 

meaningful participation and representation.

Adoption and Safe Families Act of 

1997 and Its Impact on Parents with 

Disabilities

In November 1997, Congress passed and 

President Bill Clinton signed into law the 

Adoption and Safe Families Act (ASFA), 

significantly amending the Adoption Assistance 

and Child Welfare Act (AACWA) of 1980, which 

established the modern federal foster care 

program.315 ASFA embodied an ideological 

shift from a statutory scheme that prioritized 

reunifying families in nearly all circumstances to 

one that unequivocally puts the health and safety 

of children first and aggressively seeks to move 

children through foster care to permanency in an 

expedited manner.316

While the goals of ASFA are laudable, the 

consequences can be devastating, especially 

for parents with disabilities and their children. 

A key provision of ASFA is the “15/22 rule,” 

which requires states to file a petition for TPR if 

a child has been in foster care for 15 of the most 

recent 22 months (even shorter time frames, 

defined by state law, if the child is an infant).317

While the goal of permanency is praiseworthy, 

research shows that many parents with disabilities 

find it difficult to comply within the strict timelines.

Pursuant to ASFA, states must make 

“reasonable efforts” to preserve a family before 

moving the child to an out-of-home placement 

and to reunify the family if a child has been 

removed.318 “Reasonable efforts” are not defined 

in law or in federal regulations and have been 

interpreted in a wide variety of ways by states 

and the courts.319 Unfortunately, the vagueness of 

this term, coupled with the unadapted services 

typically provided to parents with disabilities, 

means that the reasonable efforts requirement 

is not so reasonable when applied to parents 

with disabilities. Moreover, ASFA gives states 

flexibility in determining circumstances in which 

reasonable efforts are not required. In addition to 

defining specific instances, ASFA permits states 

to not provide reasonable efforts when “the state 

has determined that another reason exists that 

justifies not using reasonable efforts to reunify 

the family.”320 Research shows that states often 

include disability as one reason to deny families 

reasonable efforts. 

ASFA also reduces an agency’s focus on 

reunification by allowing workers to engage 

in concurrent two-track planning for children 

in out-of-home placement.321 Although 

concurrent planning is not required, HHS has 

stated that it is “consistent with good practice.”322

Thus, even as a social worker makes efforts to 

reunify a family, he or she may also plan for the 

failure of those efforts by paving the way for TPR 

and for adoption.323 A permanency hearing to 

develop a permanency plan must be held within 

12 months of a child’s entrance into foster care.324

According to Theresa Glennon, law professor at 

86 National Council on Disability
Temple University, because caseworkers have 

been shown to hold negative perceptions of 

people with disabilities, they may be more likely 

to focus on developing cases for termination than 

on helping parents with disabilities reunite with 

their children.325

Glennon says, “In sum, ASFA’s emphasis on 

child safety, shorter placements in foster care, 

and permanency through adoptions places great 

pressure on parents with [disabilities] seeking 

reunification with their children and the advocates 

who represent them, particularly in a complex 

legal environment.”326

The Race Against the Clock: The 15/22 

Rule

ASFA requires state child welfare agencies to 

file a petition to terminate parental rights if (1) a 

child has been in foster care for 15 of the most 

recent 22 months; (2) the child is determined to 

be an abandoned infant, as defined by state law; 

or (3) a parent has committed or been involved 

in murder, voluntary manslaughter, or felonious 

assault of one of his or her children.327 Exceptions 

are allowed on a case-by-case basis if (1) a child 

is being cared for by a relative; (2) the state 

shows a compelling reason why TPR is not in the 

best interest of the child; or (3) the state agency 

has not provided the services required by the 

case plan to return the child to a safe home if 

reasonable efforts were required.328

In response to ASFA, all states have 

adopted limits to the maximum time a child 

can spend in foster care before termination 

proceedings can be initiated.329 Typically, states 

have adopted the ASFA standard of 15 of the 

most recent 22 months in care. Some states 

specify shorter time limits, particularly for very 

young children.330

These austere timelines are detrimental for 

parents with disabilities and their families. For 

parents, the time lines are often challenging—if 

not impossible—to comply with. Alexander and 

Kundra found that “these timelines are often 

difficult to adhere to for parents who must 

secure adaptive equipment, secure services 

that are more involved than those for nondisabled parents, and, in the case of parents 

with psychiatric disabilities, may be impossible 

because of the need to seek psychiatric inpatient 

care and treatment at some point in the 

dependency process.”331 Kundra and Alexander 

further articulate, “Parents with psychiatric 

disabilities are at a particular disadvantage 

with respect to the time requirement for 

family reunification efforts as treatment for 

mental health issues can sometimes require 

more than a year to be effective.”332 At the 

same time, evaluation of specialized services 

to parents with intellectual disabilities and 

their children documents steady but slow 

progress.333 Furthermore, although filing of 

the mandatory termination petition does not 

take place until the child has been in the foster 

care system for 15 of the previous 22 months, 

the decision to terminate parental rights often 

comes at the 12-month hearing if it is believed 

that sufficient progress has not been made.334

In fact, according to Barbara J. Friesen and 

colleagues, there have been “cases in which, 

even with the court’s recognition of ongoing 

progress, parents with mental illnesses had their 

rights terminated because they were unable 

to meet reunification goals within the requisite 

timeframe.”335

In 2006, researchers Lenore M. McWey, 

Tammy L. Henderson, and Susan Tice released 

findings from a study that sought to (1) identify 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 87
how ASFA influences foster care outcomes 

of cases involving parents with psychiatric 

disabilities; (2) examine trends in TPR decisions 

of parents with psychiatric disabilities; (3) explore 

the court’s account of how parental behaviors 

influenced decisions to terminate parental 

rights; and (4) provide implications for family 

therapists.336 This study found that therapists 

either were not aware of the time concerns 

associated with ASFA or could not sufficiently 

treat clients within the time period.337 The finding 

was demonstrated, in part, by therapists’ own 

recommendations to the courts, such as that the 

parent “needs 6–8 months of treatment before 

change can even begin to occur”; mother needs 

“at least 2 years of therapy”; “family needs at 

least 1 year of family therapy before returning 

children to the home”; and parents will need 

“several years of treatment.”338

McWey, Henderson, and Tice also found that 

some parents with psychiatric disabilities had 

their parental rights terminated because they 

were unable to demonstrate within the time limit 

mandated by ASFA that they had successfully 

remedied the situation that led to the child being 

placed in foster care.339

A 2002 report from the U.S. Government 

Accountability Office (GAO) said that child welfare 

agencies found it difficult to work within ASFA’s 

strict timelines.340 These timelines often result 

in TPR for parents with disabilities. According to 

Joshua B. Kay, law professor at the University of 

Michigan, “Often, it is the timeframe of a service, 

rather than the nature or method of a service, 

that is a barrier for parents with disabilities.”341

Statutory time periods need to be extended to 

reflect the needs of parents with disabilities and 

their children. Specifically, ASFA must be amended 

to fully accommodate parents with disabilities. 

Likewise, the child welfare system must modify 

policies to comply with the ADA. Although 

these timelines were enacted out of concern 

for children, how are hasty timelines, which do 

not take into account the needs of a subset of 

parents, in the best interest of children?

The Reasonableness of “Reasonable 

Efforts”

Pursuant to ASFA, states must make reasonable 

efforts to preserve families before moving a 

child to an out-of-home placement and to reunify 

the family if the child has been removed.342 This 

means that child welfare agencies should provide 

services such as family counseling, respite care, 

and substance abuse treatment. 

At first reading, the provision seems 

particularly helpful for parents, especially 

those with disabilities. One of the exceptions 

to the 15/22 rule is if the state agency has 

not made reasonable efforts to provide the 

services required by the case plan to return the 

child to a safe home.343 However, a 1999 GAO 

report said, “According to child welfare officials 

in the three states visited, their agencies 

have so far ‘exempted few, if any, children—

and are unlikely to exempt children—for this 

reason.’”344

Laws in all states, the District of Columbia, 

Guam, and Puerto Rico require the provision 

of services that will help families remedy the 

conditions that brought the family into the child 

welfare system.345 However, the statutes in most 

states use a broad definition of what constitutes 

reasonable efforts.346 According to Esme Noelle 

DeVault, “The ‘reasonable efforts’ standard 

is ill-defined and inconsistently applied.”347 In 

fact, a 1999 GAO report notes that the term is 

not defined in law or in federal regulations and 

88 National Council on Disability
has been interpreted in a wide variety of ways 

by states and the courts.348 This vagueness 

has devastating implications for parents with 

disabilities. 

For example, DeVault says, “As applied 

to developmentally disabled parents..., the 

‘reasonable efforts’ offered are often inadequate 

reunification services that fail in any meaningful 

way to rehabilitate the parent’s fitness. These 

efforts would be improved if the state were 

to enact formal guidelines that define with 

greater specificity what constitutes ‘reasonable 

efforts.’”349 She goes on to say, “In many 

cases, reunification services are offered pro 

forma with the one size fits all concept. Under 

these circumstances, 

failure is projected and 

expected, not from the 

parents with the mental 

disability, but from the 

judges, social workers 

and service providers. 

Despite their efforts, 

parents are usually found 

unable to improve.”350

Researchers at the UPenn Collaborative 

on Community Inclusion reached a similar 

conclusion: “Although our society has afforded 

parents with psychiatric disabilities legal rights 

to receive accommodations, these rights are 

routinely given short shrift in the child welfare 

system. Courts typically determine that 

reasonable efforts have been made when a 

parent has been offered a one-size-fits-all set of 

parenting services. This approach does not work 

well for families in general, and it is especially 

inappropriate for parents with disabilities, 

whose special needs are rarely addressed.”351

Thus, “many parents with psychiatric disabilities 

lose their children because they never receive 

meaningful help to safely care for their children. 

Many others lose their children based on 

unfounded assumptions that their disabilities 

make them unfit parents or on past episodes 

before the parent began receiving effective 

mental health treatment.”352

Neither ASFA nor most state child welfare 

statutes specifically require that the reasonable 

efforts be designed to meet the needs of 

parents with disabilities, despite the fact that 

the ADA requires child welfare agencies to 

provide reasonable modifications for parents 

with disabilities.353 Reunification efforts 

are not reasonable if they do not take into 

account a parent’s 

disability—failure to 

do so means that the 

services will have little 

chance of success.354

Unfortunately, the 

majority of case law 

concludes that the 

efforts made by states 

to provide individualized services to prevent 

people with disabilities from losing parental 

rights constitute reasonable efforts, even when 

they appear to be inadequate.355 This is true even 

when the ADA requirements for modifications 

are raised.

Furthermore, a statutory mandate is not 

a guarantee that parents with disabilities will 

receive such services. For example, in B.S. 

v. Cullman, two psychologists opined that 

rehabilitative services might not enable the 

mother to successfully parent on her own.356

Therefore, the court determined that providing 

services “would place an undue burden on 

an agency, [which was] already struggling 

Reunification efforts are not 

reasonable if they do not take into 

account a parent’s disability—failure 

to do so means that the services will 

have little chance of success

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 89
with its duty to rehabilitate those parents and 

reunite those families who [could] be aided 

by its assistance.”357 Thus, even in states with 

statutory obligations to provide services, 

parents with disabilities “face barriers based 

on what may be ambiguous or discriminatory 

criteria.”358

So ASFA’s reasonable efforts provision is 

not so reasonable when it is applied to parents 

with disabilities; in fact, it has potentially 

devastating consequences for them. The 

provision is incredibly vague and has led to 

child welfare agencies providing generic, onesize-fits-all services, which violates the ADA 

reasonable accommodation mandate. (See 

Chapter 9 for a discussion of appropriate 

adapted services.)

Fast Track: Bypassing Parents with 

Disabilities

In an attempt to clarify AACWA’s reasonable 

efforts requirement, Congress singled out a 

handful of circumstances in which efforts to 

reunite were not required.359 This significant 

provision of ASFA, commonly referred to as 

“fast track,” allows states to bypass reasonable 

efforts if a parent has committed murder or 

voluntary manslaughter of another of his or 

her children; been complicit in such a murder 

or manslaughter, or an attempted murder or 

manslaughter; committed a felony assault 

resulting in serious bodily injury to the child 

or another child; or when the parent’s rights 

to a sibling of the child have been terminated 

involuntarily.360 Additionally, under ASFA, 

reasonable efforts to reunite children with their 

parents are not required if “the parent has 

subjected the child to aggravated circumstances 

(as defined in state law, which definition may 

include but need not be limited to abandonment, 

torture, chronic abuse, and sexual abuse).”361

In such cases, states are required to hold a 

permanency hearing within 30 days and to make 

reasonable efforts to place the child for adoption, 

with a legal guardian, or in another acceptable 

permanent place.362

According to Kathleen S. Bean, law professor 

at Brandeis School of Law, University of 

Louisville, “The impact on the health and safety 

of children when reunification efforts are not 

required can be tremendous. It ends the state’s 

responsibility to provide services; it ends the 

duty to facilitate and encourage visitation; and 

it almost inevitably places the parent just steps 

away from termination of parental rights. Without 

reasonable efforts, the opportunity to address 

the problems that contributed to the child’s 

removal and to work toward reunification to avoid 

the damage from disrupting the parent-child 

relationship is remote.”363

The fast-track provision has many detrimental 

consequences for parents with disabilities 

and their children. For example, states are 

not required to provide reasonable efforts if 

the parent’s right to a sibling of the child have 

been terminated involuntarily.364 Anecdotal 

evidence suggests that this ground for bypass 

may disparately affect parents with disabilities 

because the previous loss of a child might have 

been caused by the state’s failure to provide 

proper services.

Equally detrimental is the “aggravated 

circumstances” portion of the fast-track 

provision. Bean says, “The vagueness of the 

aggravated circumstances exception contributes 

to the likelihood that life-altering decisions will 

be arbitrary, capricious, and discriminatory. 

The phrase invites inconsistent, unpredictable 

90 National Council on Disability
decisions about when a state should expend 

efforts to reunite a child with his or her parents.”365

This vagueness unquestionably affects parents 

with disabilities, particularly because some states 

have expressly included parental disability as 

an “aggravated circumstance.” That is, some 

state statutes explicitly state that when a parent 

has a disability—intellectual or psychiatric—a 

court may dispense with reunification services 

if it finds that the parent is not likely to benefit 

from them.366 Such bypass provisions exist in 

six states (Alabama, Alaska, Arizona, California, 

North Dakota, and Utah) as well as Puerto Rico.367

In these states, the child welfare system is not 

required to provide services if the court finds by 

clear and convincing evidence that the parent has 

a psychiatric or intellectual disability “that renders 

him or her incapable of utilizing services.”368

Watkins says, “Thus, a parent’s disability often 

serves as a dual liability: Her disability leads to the 

initial intervention and then precludes her from an 

opportunity to regain custody of her child.”369

Parents’ Stories: Lorena

Lorena’s story demonstrates just how devastating bypass statutes are for parents with 

disabilities and their children.370 Lorena, an older Latina mother in California who has autism, 

has raised one daughter to adulthood. Her daughters Sasha and Marie—ages 12 and 14, 

respectively—still live with her. Lorena was unable to work for several years, and between 

her autism and Sasha’s autism, the cost of treatment and transportation for medical, 

educational, and therapeutic care resulted in their becoming homeless. 

Lorena contacted social services for help. They convinced her to place Marie and Sasha 

in foster care temporarily. Because of Sasha’s disability, she was placed separately from 

her big sister in a special needs foster care home. Lorena was very upset that her children 

were separated. Her case moved from voluntary to involuntary, and a public defender 

was appointed. Lorena became alarmed when she saw Sasha’s deteriorating emotional 

state and lack of personal hygiene: long, jagged, dirty nails; unwashed hair; inflamed 

and infected gums. Child welfare workers reprimanded her for taking pictures of her 

daughter’s condition and sending them to county counsel representing social services. 

When Lorena became overwhelmed and upset during a visit with Sasha because Marie 

was not brought, as had been promised, the police were called to intervene. They found 

no safety issue.

Child welfare then required Lorena to submit to two psychological evaluations. If these 

evaluations were interpreted to show that Lorena was unlikely to benefit from parenting 

services, she could be bypassed (denied the due process rights that a nondisabled parent 

receives). Lorena “failed” the tests and was deemed bypassed, ending her limited services 

and visitation. Throughout this process, Lorena felt that her public defender was unmotivated 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 91
ASFA’s fast-track provision is incredibly 

disconcerting and has led to states denying 

many parents the due process guaranteed 

to nondisabled parents before they lose their 

constitutionally protected parenting rights. 

Congress must amend ASFA to protect the rights 

of parents with disabilities and their families. 

Further, this provision undoubtedly conflicts with 

Title II of the ADA, which prohibits public entities, 

such as those in the child welfare system, from 

denying people with disabilities access to services 

and programs on the sole basis of disability.371

DOJ, in collaboration with HHS as appropriate, 

must actively enforce these mandates.

Concurrent Planning: Just How 

Concurrent Is It?

Concurrent planning is another significant 

component of ASFA. Although it is optional, HHS 

states that it is “consistent with good practice.”372

Concurrent planning involves considering all 

reasonable options for permanency at the 

earliest possible point following a child’s entry 

into foster care and concurrently pursuing those 

that will best serve the child’s needs. While the 

primary plan should typically be reunification, in 

concurrent planning, an alternative permanency 

goal is pursued at the same time.

373

Some critics have asserted that the early 

development of an alternative permanency 

plan conflicts with agencies’ pursuit of family 

reunification.374 Others have raised concerns that 

concurrent planning practices may undermine 

family reunification efforts.375 Fred Wulczyn of 

the University of Chicago notes that concurrent 

planning may lead caseworkers to work less 

vigorously toward family reunification.376 Another 

concern is that birth parents may have difficulty 

working with caseworkers when they know 

that alternative permanency options are being 

actively pursued.377 In fact, findings from a 

recent survey (posted on the Child Welfare 

Information Gateway Web site, a service of 

HHS Children’s Bureau) reveal that CPS workers 

themselves believe that concurrent planning 

“can cause anxiety for birth and/or foster 

adoptive parents and impede reunification 

efforts.”378

It is not clear how many states have formal 

concurrent planning policies, but the Child 

Welfare Information Gateway indicates that 

some states mandate concurrent planning in 

cases with “poor prognosis indicators.”379 The 

most commonly used poor progress indicator 

is this one: “Parent has significant, protracted, 

and untreated mental health issues and parent’s 

to help. The attorney never raised the ADA, even to argue against bypass; was not willing to 

accommodate Lorena’s communication needs; was dismissive of motherly concerns about 

her vulnerable daughter’s care; and refused to work with TLG. Ultimately, however, the 

children’s attorney became interested in working with TLG’s legal program. Together, they 

located a psychiatrist affiliated with a local university disability program who had research and 

clinical familiarity with the subject. Despite the bypass, the local child welfare agency agreed 

to fund a proper assessment. The matter is ongoing.

92 National Council on Disability
rights to another child have been involuntarily 

terminated.”380

Concurrent planning can negatively affect 

parents with disabilities and their children. Jude 

T. Pannell, in his Drake Law Review article, says, 

“Some caseworkers fail to make the necessary 

efforts to preserve and reunite families because 

sanism leads them to believe any efforts they 

make are futile and mentally disabled parents 

cannot become capable of parenting. The taint 

of such prejudice may color the caseworker’s 

efforts in the concurrent planning phase, making 

TPR inevitable instead of merely possible. A 

caseworker is less likely to recommend helpful 

services if he or she is convinced the parent 

will remain unstable, dangerous, and violent 

regardless of those 

services.”381 He also says, 

“The tight timeframes 

and concurrent planning 

called for by the ASFA 

make it essential for 

parents to quickly 

rehabilitate themselves. 

Parents facing TPR rely on their state caseworkers 

to guide them through the process, but the 

same parents understand the caseworker is also 

evaluating them for fitness as parents.”382 As a 

result of this situation, parents with psychiatric 

disabilities “may be fearful of alienating their 

caseworkers by being too demanding; may fear 

being stigmatized by their caseworker if they 

are seen as mentally ill; or may not be ready to 

acknowledge the presence of mental illness.”383

According to the Adoption and Foster Care 

Analysis and Reporting System (AFCARS), 

reunification was the stated permanency 

planning goal for only 49 percent of children 

in foster care between 2006 and 2009.384 It 

would be interesting to know how many of those 

children have parents with disabilities.

Perceived Limits on Application of 

the Americans with Disabilities Act at 

Termination Phase

Despite the ADA’s obvious application to the child 

welfare system, state courts have resisted ADA 

defenses in TPR cases. The case law concerning 

the ADA and parental rights has overwhelmingly 

favored states and rejected the claims of parents 

with disabilities. Many courts have held that 

the ADA may not be raised as a defense to TPR 

proceedings for a variety of reasons.385 Some 

courts have refused to apply the ADA because 

TPR proceedings are not a “service, program 

or activity” within the 

meaning of the ADA.386

Others have held that 

the ADA does not apply 

to TPR proceedings 

because the court’s 

jurisdiction is limited to 

interpreting the state 

child welfare law (i.e., determining the best 

interest of the child or reasonable efforts) rather 

than conducting “an open-ended inquiry into 

how the parents might respond to alternative 

services and why those services have not been 

provided.”387 Finally, some courts have concluded 

that the ADA provides no defense to TPR 

proceedings because Title II contemplates only 

affirmative action on the part of the injured party 

rather than defenses against a legal action by a 

public entity.388

Not all courts have held that the ADA is 

inapplicable to TPR proceedings. Some courts 

have held that the law does provide a defense 

in such proceedings,389 and others have applied 

Despite the ADA’s obvious 

application to the child welfare 

system, state courts have resisted 

ADA defenses in TPR cases

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 93
the ADA in TPR proceedings without specifically 

ruling on its applicability.390 Overwhelmingly, 

however, those courts have failed to appropriately 

apply the ADA, concluding that sufficient 

reasonable modifications in services were 

made to accommodate parents’ disabilities and, 

therefore, no ADA violations occurred.391

The Supreme Court has not ruled on whether 

state court proceedings such as TPR proceedings 

constitute “state activity” or “service.”392 In 

October 2006, a certiorari petition was filed in the 

Supreme Court seeking review of a Rhode Island 

court’s decision that a TPR proceeding “does not 

constitute the sort of service, program or activity 

that would be governed by the dictates of the 

ADA.”393 The question presented was “whether 

Title II applies to termination of parental rights 

proceedings initiated by state agencies and 

prosecuted in state courts.”394 The petition noted 

that the Rhode Island decision is inconsistent 

with the plain language of the ADA and with the 

Supreme Court’s ruling in Pennsylvania Dep’t of 

Corrections v. Yeskey,

395 which made clear that 

the ADA makes no exceptions for activities that 

implicate particularly strong state interests.396

This petition was denied, and conflict still exists 

on these issues among state courts.

The ADA was enacted to ensure the rights of 

all people with disabilities, including parents with 

disabilities. DOJ, and HHS as appropriate, must 

hold state courts and the entire child welfare 

system accountable. Furthermore, given the 

patchwork of decisions concerning the ADA and 

the child welfare system, the Supreme Court 

should address this issue, holding that the ADA 

does in fact apply. Until the mandates of the ADA 

are fully recognized and complied with, parents 

with disabilities and their children will continue to 

be torn apart unnecessarily.

Bias, Speculation, and the “Unfit 

Parent” Standard

Beginning with the investigation into a report 

of child maltreatment, bias pervades the child 

welfare system at every step. TPR generally 

hinges on “unfitness.”397 Most termination 

statutes identify various factors that the courts 

should consider when determining parental 

unfitness.398 Although the factors are inexact, 

states typically focus on neglect and abuse.399

Moreover, these statutes almost unvaryingly 

include disability, often psychiatric and 

intellectual, as factors for courts to consider.400

Watkins says, “Although the statutes generally 

require evidence of some connection between 

a parent’s disability and her ability to parent, 

the level of proof required varies from state 

to state and, within many states, from case 

to case.”401 Even in states that do not list 

disability as a ground for termination, courts 

have largely included it as a factor to consider 

in termination proceedings, usually under the 

rubric of “unfitness” or “incapacity.”402 While 

all parents are presumed “fit” until the state 

proves otherwise,403 “the presumption that 

children’s best interests are in remaining with 

their natural parents who wish to raise them” 

is frequently reversed in practice for parents 

with disabilities. Instead, “they must prove their 

competence in the face of myriad presumptions 

of inadequacy.”404

Presumptions of unfitness are most obvious 

in cases where the parent has never actually 

had custody of the child. Intervention in these 

cases often takes place before or shortly after 

birth, even though the parents have done 

nothing to harm their child.405 Such cases are 

quite common, and “parents in these cases 

often do not contest removal or termination, 

94 National Council on Disability
perhaps because no strong bond has formed 

between parent and child, or perhaps because 

of pressure from the social service system.”406

Also, the oppression most people with 

disabilities experience in their lifetimes can 

affect their ability to self-advocate.

Parents’ Stories: Erika Johnson and Blake Sinnett

In 2010, a Missouri couple experienced the tragic consequences of the presumption of 

unfitness when their two-day-old daughter was taken into custody by the state because 

the both parents were blind.407 This removal was not based on allegations of abuse, just a 

fear that the parents would be unable to care for their daughter. Because the couple was 

presumed unfit, for nearly two months they were permitted to visit their daughter only 

two to three times a week, for just an hour at a time, with a foster parent monitoring.408

Questions arose within hours of their daughter’s birth, after awkward first attempts at breastfeeding—something many new mothers experience.409 Following this incident, a nurse wrote 

on a chart, “The child is without proper custody, support or care due to both of parents being 

blind and they do not have specialized training to assist them.”410 “Her words set into motion 

the state mechanisms intended to protect children from physical or sexual abuse, unsanitary 

conditions, neglect, or absence of basic needs being met.”411 A social worker from the state 

came by the mother’s hospital room and asked her a variety of questions about how they 

would care for their daughter.412 The social worker then told the parents they would need 

24-hour care for their daughter, which the parents replied they could not afford and did not 

need.413 Nonetheless, their daughter was taken into foster care, and a 57-day battle ensued 

before they were finally reunited with her.414 This family’s story shows the devastation that 

can occur when there is a presumption of unfitness; the parents were presumed to be unfit 

and had to fight to prove their fitness to be parents.

Parents’ Stories: Tyler and Brandy

Tyler and Brandy also faced the consequences of the presumption of unfitness.415 A young 

Native American couple with psychosocial (Tyler) and intellectual (Brandy) disabilities, had 

a new baby daughter, Pia. Brandy has a caseworker and receives services for her disability 

through the Department of Rehabilitation. Brandy and Tyler’s capacity to parent was not 

questioned until Pia came home from the hospital, at which point Brandy’s caseworker and 

a social worker from child welfare explained to her that a case would be opened based on 

parental disability. After two weeks of child welfare visits, Brandy became upset during a 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 95
visit and left the house to take a break. She was accused of leaving the nonmobile Pia lying 

“unattended,” although Tyler and the workers were in the living room. This incident and the 

parents’ disabilities were considered grounds for removal. Brandy and Tyler were provided 

with neither evaluation nor parenting services. 

The family contacted TLG’s legal program, which contacted the child welfare agency, 

attorneys on both sides, and the family’s tribe, notifying them of the need to consider 

the ADA and provide accommodated services. CPS argued that the lack of such services 

excused compliance. The director of TLG’s legal program cold-called universities and 

located a psychologist with the proper qualifications to provide an accommodated parenting 

assessment, which CPS then refused to fund. The psychologist herself found funding for 

and completed the assessment, making formal recommendations to child welfare and the 

court. The recommendations included the following accommodated reunification services: 

“increased opportunity for parenting time with Pia in the natural setting of their home, 

starting with two hours at a time several times per week with a support person who is 

trained to teach parenting skills and is sensitive to accommodations necessary when 

working with developmentally disabled parents.” The psychologist also said, “A professional 

provider independent of the state should evaluate Brandy and Tyler’s progress or lack thereof 

on parenting weaknesses periodically. This provider should be one source of input to the 

court and child welfare regarding expanding or limiting parenting time.” The child welfare 

agency refused to implement or fund any services. 

The family filed a civil rights complaint with DOJ, which transferred it to HHS. The 

HHS investigation found no discrimination and did not discuss the post evaluation 

recommendations. After the issuance of the ADA Amendments Act (ADAAA) regulations, the 

family refiled with DOJ, hoping for a new investigation. This has not occurred. When notified 

of the complaint, the judge said, “No one around here is afraid of a civil rights investigation.” 

The family members who supported Brandy and Tyler in filing the complaint were excluded 

from all future courtroom proceedings. Pia’s tribe (unfamiliar with the ADA’s application in 

child welfare) formulaically endorsed the child welfare department’s reunification efforts as 

sufficient and has provided no support to the parents’ efforts to secure proper services. The 

family recently participated in a jury trial (their state is one of the few that uses jury trials in 

child welfare matters). The jury found that child welfare had not provided proper services and 

that termination of parental rights was not appropriate. The child welfare agency has been 

ordered to work with the family to provide proper services. After the trial, some members of 

the jury cried and hugged the father, whose own traumatic childhood as a disabled foster child 

had been presented on direct examination. This matter is still ongoing. Pia has been out of her 

family’s care for several years; whatever the ultimate resolution of this case, someone will lose.

96 National Council on Disability
The child welfare system is fraught with bias 

and speculation concerning the parenting abilities 

of people with disabilities. The impact of this 

situation on the best interests of children is rarely 

addressed but has devastating consequences, as 

Jeanne’s story illustrates.416

Parents’ Stories: Jeanne

Jeanne, a young Native American mother with intellectual disabilities, lives in a supported 

living facility in Florida with her five-year-old daughter, Leya. On the basis of Jeanne’s 

disability, she and Leya have had assigned social workers and an open child welfare case 

since Leya’s birth and have received parent-child intervention services. 

With Leya starting kindergarten, social workers began questioning how an intellectually 

disabled mother could promote the child’s well-being. Jeanne was assessed with IQ testing, 

interviewing, and limited observation. On the basis of the results, it was speculated that by 

middle school, Jeanne would be unable to help Leya with homework and would possibly 

have trouble retaining parental authority. Social workers, therefore, decided to establish for 

Leya a relationship with her estranged father. She had never lived with him, and her mother 

had no relationship with him, but he did not have a disability. The goal: to eventually switch 

custody to the father. 

Jeanne was opposed and anxious but acquiesced. However, after a number of visits, Jeanne 

told the social workers that she did not want them to send Leya to see her father any longer. 

She told them that Leya was scared to go there—she was regressing, fearful of sleeping, 

wetting herself after having been potty-trained for years, and she came home from visits 

upset. The social workers dismissed her concerns and continued to insist that Leya spend 

time with her father. Finally, after Leya’s return from a visit, Jeanne was giving her a bath 

and observed evidence of sexual abuse. She contacted the police and the social workers. 

Leya was given medical treatment, the police opened an investigation, and the father was 

eventually convicted of, and jailed for, child sexual abuse. 

And yet local child welfare remained convinced that Jeanne could not parent Leya. A personal 

attendant helped Jeanne contact TLG’s legal program, which referred her to the local Indian 

legal services. There, a devoted attorney persuaded child welfare to close the case. Jeanne 

fled the area with her child, fearing the Leya might again be harmed by arbitrary actions. She 

has not contacted anyone involved in the case.

Presumption of unfitness is a common 

problem for parents with psychiatric disabilities. 

Indeed, according to Susan Stefan, a highly 

recognized disability law attorney, there are “a 

number of false stereotypes reflected in lower 

court decisions and termination filings that 

also permeate the attitudes of child protective 

services workers and the agencies where they 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 97
operate: psychiatric disability and symptoms 

are permanent and unchanging; requiring 

assistance means the person is unfit to parent; 

being disrespectful to the social worker means 

unfitness to parent; and attempting suicide 

means unfitness to parent.”417 In essence, “the 

social stigma of being a parent with a mental 

disability, generalized statistical data, age-old 

stereotypes, and horrific news stories may affect 

court determinations about a parent’s ability to 

raise a child based on their condition instead of 

their conduct.”418

Lightfoot, Hill, and LaLiberte note, “Parents 

with disabilities face social stereotypes and 

prejudicial presumptions that they will inevitably 

maltreat their children 

or put them at risk from 

others, or that they have 

irremediable parenting 

deficiencies that put 

their children at risk and 

risk their developmental 

outcomes.”419 In fact, 

many child welfare 

practices specify that parental disability is a high 

risk for abuse, so parents with disabilities often 

experience more scrutiny from child protective 

services.420 For example, NCANDS, a federally 

sponsored data collection effort that tracks the 

volume and nature of child maltreatment reporting 

each year in the United States, considers parental 

disability a risk factor. Presumption of unfitness 

of parents with disabilities applies equally to 

the courts. “When courts allow presumptions 

of inadequacy to replace individual inquiry, they 

erect insurmountable hurdles for parents [with 

disabilities].”421 Undoubtedly, this unfortunate 

presumption is a result of attitudinal bias, which is 

still prevalent. “Attitudinal bias leads to speculation 

by neighbors, family members, and medical 

personnel that a parent with a disability cannot 

be a safe parent. These are the individuals most 

likely to report a parent with a disability to a child 

welfare agency for no reason other than the 

disability, thus starting the family’s dependency 

involvement and often leading to termination of 

parental rights.”422

The child welfare system must make 

significant changes in the way it serves, and even 

views, parents with disabilities and their children. 

Parental disability must not be considered a 

“risk factor.” Moreover, the ADA forbids the child 

welfare system from presuming that parents with 

disabilities are unfit.

Issues in Meaningful 

Participation and 

Representation

Once involved with 

child welfare services 

and facing TPR, parents 

with disabilities face 

numerous and significant 

obstacles to meaningful participation and 

representation.

Pursuant to Title II of the ADA, child welfare 

agencies, including the courts, must 

accommodate parents with disabilities and 

ensure that they are guaranteed meaningful 

participation. Nonetheless, Callow, Buckland, and 

Jones note, “Because of inaccessible, 

inappropriate or non-existent services, parents 

with disabilities are often prevented from 

meaningful participation in evaluations, 

mediations, case plan services and court 

hearings.”423 A variety of accommodations and 

modifications, as required by the ADA, can 

ensure that parents with disabilities have 

“When courts allow presumptions 

of inadequacy to replace individual 

inquiry, they erect insurmountable 

hurdles for parents [with 

disabilities].

98 National Council on Disability
meaningful participation in the process. Examples 

of accommodations for parents at hearings and 

meetings include phone contact, email, or brailled 

notices of hearings and meetings to blind 

parents; meeting or hearing rooms that parents 

with a physical disability can access and use with 

their equipment; computer-assisted real-time 

translation (CART) or sign language interpreters 

so deaf and hard of hearing parents can follow 

proceedings; meetings held at a time of day 

when a parent with psychiatric disabilities is least 

impaired by psychotropic medications; allowing 

an advocate to accompany a parent with 

intellectual disabilities to help him or her 

meaningfully participate in the proceedings.424

Obtaining legal representation is a significant 

barrier for many parents facing TPR. In Lassiter v. 

Department of Social Services,

425 the Supreme 

Court held that the due process clause of the 

14th Amendment does not automatically provide 

the right to counsel to indigent parents facing 

TPR. Instead, the Court held that courts had the 

responsibility to determine, on a case-by-case 

basis, whether the facts of the particular case 

created a federal constitutional right to counsel. 

However, the Court did note that “a wise public 

policy . . . may require that higher standards be 

adopted than those minimally tolerable under 

the Constitution” and that “informed opinion has 

clearly come to hold that an indigent parent is 

entitled to the assistance of appointed counsel 

not only in parental termination proceedings, 

but in dependency and neglect proceedings as 

well.” Since the Lassiter decision, states have 

responded in various ways to the mandate to 

provide legal counsel to indigent parents.426 A 

national survey revealed that in at least 12 states, 

parents do not have an absolute statutory right 

to counsel after the initiation of child protection 

proceedings against them.427 In at least six 

states, parents do not have an absolute statutory 

right to counsel in TPR hearings.428 And in many 

Examples of Accommodations for 

Parents at Child Welfare Hearings

1. Phone contact, email, or brailled notices 

of hearings and meetings to blind 

parents;

2. Meeting or hearing rooms that parents 

with a physical disability can access and 

use with their equipment;

3. Computer-assisted real-time translation 

(CART) or sign language interpreters so 

deaf and hard of hearing parents can 

follow proceedings;

4. Meetings held at a time of day when a 

parent with psychiatric disabilities is least 

impaired by psychotropic medications; 

and

5. Allowing an advocate to accompany a 

parent with intellectual disabilities to help 

him or her meaningfully participate in the 

proceedings.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 99
states, the right is governed by statute and not 

protected by constitutional principles.429

In August 2006, recognizing the importance 

of representation in dependency cases, the 

American Bar Association (ABA) House of 

Delegates unanimously passed a resolution 

endorsing a civil right to counsel in cases related 

to basic human needs.430 The basic human needs 

identified in this resolution as most critical for 

low-income persons and families include shelter, 

sustenance, safety, health, and child custody.431

Moreover, “This resolution focuses the right on 

low-income persons but gives each jurisdiction 

the flexibility to determine who should be 

considered to fit into that category.”432 In fact, 

according to the ABA, 

the association’s “long 

history of examining 

this issue has led it to 

conclude that the risk 

of error when indigent 

parent-defendants 

are not represented 

in such matters is 

so great that fair and equal access to justice 

requires the appointment of counsel.”433 The 

ABA states that “despite the relaxed evidentiary 

standards in abuse and neglect proceedings, 

most unrepresented parents cannot perform the 

advocacy functions—including investigating facts, 

making an orderly factual presentation, and crossexamining witnesses—that are required. Cases 

throughout the country demonstrate that the 

need for and manner in which evidence must be 

presented remains beyond the understanding of 

many indigent parent-defendants.”434 Further, “not 

only are indigent parent-defendants ill-equipped 

to defend their fundamental right to parent, but 

there is a high probability that whether they 

are represented by counsel will be outcomedeterminative.”435

Despite the significance of having 

representation during dependency matters, 

indigent parents often experience barriers to 

securing affordable and effective representation. 

For parents with disabilities, securing 

representation is even more challenging. Many 

attorneys lack the skills and experience to meet 

the needs of parents with disabilities. Parents 

with disabilities are often represented by courtappointed legal representatives who typically 

have excessive caseloads and little if any training 

in disability.436 The parents “may not receive 

adequate explanations of proceedings or the help 

they need in order to be 

able to articulate their 

wishes and respond 

to the evidence filed 

in court. Such legal 

representatives may 

not appreciate the need 

for explanations to be 

couched in language 

that parents can understand. Moreover, legal 

representatives may be unable—if not unwilling—

to appreciate the parents’ commitment to 

caring for their children.”437 In fact, McConnell 

and Llewellyn “found that among the thirty 

lawyers they interviewed there was substantial 

agreement that these parents require more time 

in such cases—time that is rarely available and for 

which there is no extra remuneration. The lawyers 

explained that it is very difficult to determine 

whether parents with intellectual disability 

adequately understand the nature of court 

proceedings, the evidence and the legal strategy 

proposed. It was therefore thought very difficult 

to not only obtain reliable instructions—that is, 

Parents with disabilities are often 

represented by court-appointed 

legal representatives who typically 

have excessive caseloads and little 

if any training in disability

100 National Council on Disability
to know what the parent really wants his or her 

legal representative to do—but also to thoroughly 

scrutinize the evidence, given that many parents 

have poor literacy skills.”438

Callow, Buckland, and Jones have found a 

“failure of the bar to rise to the occasion and 

zealously work to win on evidence in these 

cases involving parents with diverse disabilities. 

Evidence is not created to defend parents, 

such as adapted baby care evaluation reports. 

Evidence is not presented, such as failure to 

present the court with evidence of adaptive 

equipment that will enable a parent to care for a 

child or tackle emergency situations (such as bedshaking smoke alarms for parents who are deaf). 

Finally, evidence is not challenged, as in counsel 

failing to challenge a biased/unadapted parenting 

evaluation that recommends termination of 

rights or a switch in custody from a parent with a 

disability.”439

Hayman says, “The parents’ advocate is not 

immune to the biases that affect legislators, 

administrators, and judges.”440

In sum, parents with disabilities regularly 

encounter a dearth of accessible, appropriate 

services. This prevents them from meaningful 

participation in evaluations, mediations, case 

plan services, and court hearings. Furthermore, 

a parent’s right to an attorney (in some states), 

the right to cross-examine witnesses, and the 

right to present expert testimony to contradict 

or clarify testimony from the state’s expert is 

unattainable for many parents with disabilities. 

Instead, they are appointed attorneys who may 

have no knowledge of disability and often fail to 

understand the impact of disability on parenting 

capacity. 

Teri L. Mosier, a deaf attorney, said “Each 

day in courtrooms across the United States, a 

recurring drama unfolds. Parents who want to 

maintain a relationship with their child will be told 

they cannot because, in the state’s view, they are 

unfit beyond redemption. They will be told that 

the companionship, custody and care of their 

child will be forever denied to them. They will no 

longer have the right to participate in their child’s 

upbringing, or even to visit the child. The child 

will permanently lose the connection to his or 

her natural family. If the child is not subsequently 

adopted, that child will forever remain a 

judicially mandated orphan.”441 For parents with 

disabilities, this nightmare is compounded by 

significant barriers to meaningful participation and 

representation. 

Given their expertise in representing people 

with disabilities, the P&A system must make 

parenting rights a priority. Similarly, child welfare 

agencies, including the courts, must fully comply 

with the ADA. DOJ, in collaboration with HHS 

as appropriate, must ensure that parents with 

disabilities are treated fairly and lawfully. 

The Impact on Children 

“No matter where they live in the world, 

no matter what they eat for dinner, no matter where they go to school, there is one 

common thread you can find in every child; 

they expect to go to bed and wake up with 

the same family. In almost every situation, 

children thrive most with their natural families.442 ‘When family integrity is broken or 

weakened by state intrusion, [the child’s] 

needs are thwarted and . . . [t]he effect 

on the child’s developmental progress is 

invariably detrimental.’443 Children placed in 

foster care are at risk for more behavioral, 

psychological, developmental and academic 

problems.”444

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 101
Children are removed from parents with 

disabilities with startling frequency. TPR 

is undoubtedly traumatic for parents with 

disabilities, but what is its impact on children? Is 

removing children from their home always truly in 

their best interest?

Nearly every child who is removed from 

a parent with a disability experiences some 

trauma over the separation. In their article in the 

Texas Journal of Civil Liberties and Civil Rights, 

Callow, Buckland, and Jones said, “Psychology 

and science have documented a much clearer 

picture of the severe emotional and psychological 

damage infants and young children experience 

when separated from 

their primary caregivers. 

In fact, arguably the 

most significant issue 

for a child’s development 

is now known to be a 

secure attachment to a 

sensitive, responsive, 

and reliable caregiver.”445

When children 

are removed from 

their parents, their 

experiences go through specific phases. Callow, 

Buckland, and Jones articulate: “The child will 

first express protest and do everything it can 

to get back to the mother or other caregiver. 

The next phase is despair as the child begins to 

fear it will not be reunited with the mother or 

other caregiver. Finally, the child will experience 

detachment, when it gives up hope. The pain may 

be so great that it loses hope of ever having that 

security and love again.”446

This process has significant detrimental 

effects. The children often experience 

“pathological attachments to the old caregiver 

if reunited or toward new caregivers during 

separations. Insecure attachment; the more 

severe disorganized attachment, in which a 

child wants but cannot bring itself to seek the 

soothing and comfort of a caregiver; and reactive 

attachment disorder, which is mentally and 

emotionally disabling, are all in the spectrum 

of predictable outcomes from traumatic and/

or repeated separations.”447 The long-term 

results are even more devastating: “Traumatic 

and/or repeated separations from caregivers 

place children at an increased risk of conduct 

disturbances, disruptive behavioral problems, 

attention disorders, and mood disorders. 

Children who are denied 

secure attachment 

due to separation 

are less able to cope 

with psychological 

trauma, self-regulate 

their behavior, handle 

social interactions, 

and formulate positive 

self-esteem and selfreliance.”448

Social science 

research demonstrates the harm of taking 

children out of their families and placing them in 

foster care. A matched study of drug-exposed 

babies, which compared newborns placed 

in foster care with newborns allowed to stay 

with their parents, showed that “at six months 

of age, the infants left in foster care were 

significantly less likely to reach, roll over, or sit 

up than those left with their mothers.”449 Many 

child development theorists and practitioners 

argue that despite the need for permanence, 

children are harmed by TPR, and “severing the 

relationship with a biological parent is deeply 

“Children who are denied secure 

attachment due to separation are 

less able to cope with psychological 

trauma, self-regulate their behavior, 

handle social interactions, and 

formulate positive self-esteem and 

self-reliance.

102 National Council on Disability
traumatic, even when that parent has been 

neglectful.”450 Substantial evidence demonstrates 

children in foster care benefit from contact 

with their parent “in terms of greater emotional 

security and self-esteem and improved ability to 

form relationships.”451

Despite extensive evidence regarding the 

danger of removal and multiple placements 

for young children, such procedures are 

still the standard for children involved in 

the dependency process. For parents with 

disabilities, removal and reunification is more 

common than maintenance and services with 

the children in the home.452 After the removal, 

foster care brings its 

own set of problems. 

To begin, removal of 

a child most often 

means many foster 

care placements for 

the child. For example, 

in Los Angeles, which 

has the nation’s largest 

dependency system, 

24.3 percent of foster 

children less than one year old, 33.5 percent 

of children aged one through two, and 

38.8 percent of children aged three through 

five experience three or more caretakers 

in a 13- to 23-month stay in foster care.453

Throughout the country, most children remain 

in foster care for a substantial length of time 

after TPR, while an adoptive home is sought 

and finalized. Recent data reveal that “there are 

currently half a million children in foster care, 

with twenty percent of these children having 

remained there for five years or longer.”454 The 

Congressional Coalition on Adoption Institute 

reports that more than 65,000 children in 

foster care in the United States are placed in 

institutions or group homes, not in traditional 

foster homes.455

The current economic condition is 

significantly affecting the child welfare system 

and most important, the children involved. 

Poverty is a factor in the increase in the number 

of children placed in foster care. According to 

Deborah Paruch, law professor at the University 

of Detroit, “The United States has approximately 

fourteen million children living at or below 

the poverty level, which is the highest child 

poverty rate among all industrialized nations.”456

As the number of children in poverty and, in 

turn, in the foster care 

system increases, so 

do the caseloads of 

social workers, which 

limits “their ability to 

visit children, assess 

safety, and respond 

appropriately to the 

needs of the children 

and their families,” and 

in turn contributes to 

longer stays in foster care.457 Moreover, states 

continue to face significant budget deficits 

and are slashing child welfare funding.458

Paruch says, “Such a sequence of Catch-22s is 

clearly not in the best interest of children, their 

families, or the professionals charged with their 

oversight.”459

Being placed in foster care significantly 

affects children. Children raised in foster care 

end up with more mental health issues, lower 

employment rates, less insurance coverage, 

and a higher rate of homelessness than the rest 

of the population.460 Attorney Alexis Collentine 

says, “The foster care system is meant to 

Children raised in foster care end 

up with more mental health issues, 

lower employment rates, less 

insurance coverage, and a higher 

rate of homelessness than the rest 

of the population

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 103
offer security to children, but it often does the 

opposite. While there are many excellent foster 

parents, there is also abuse of children in care 

by both foster parents and other foster children. 

A national report on child fatalities found that a 

child in foster care is twice as likely to die from 

abuse as is a child in the general population of 

children. New Jersey parents whose children 

were removed due to inadequate housing sued 

because their children returned from foster care 

with clear signs of physical abuse. Long stints 

in foster care often involve moving between 

multiple foster homes, with children experiencing 

disruptions in schooling and relationships. These 

constant changes make it difficult to develop and 

maintain connections that are crucial to a child’s 

growth.”461 Children in foster care are twice as 

likely to be killed, two to four times more likely to 

be sexually abused, and three times more likely 

to be physically abused.462 In fact, according to 

a recent study conducted by Joseph Doyle, an 

economics professor at MIT who studies social 

policy, “Children on the margin of foster care 

placement have better employment, delinquency, 

and teen motherhood outcomes when they 

remain at home.”463 According to Gary Stangler, 

executive director of the Jim Casey Youth 

Opportunities Initiative, a foundation for foster 

teens, this study “confirms what experience and 

observation tell us: Kids who can remain in their 

homes do better than in foster care.”464

Despite such significant problems, foster care 

remains a reality for many children. Reunifications 

have declined, dropping steadily from 60 percent 

in 1998 to 53 percent in 2006.465 Furthermore, 

while adoptions of youth in foster care increased 

between 1998 and 2006, more youth aged out of 

care unadopted between 1998 and 2006.466

Children’s Stories: Bobby

Bobby’s story illustrates the trauma endured by children when a family is wrongfully 

separated.467 In Kentucky, Louise, a grandmother in her early 60s, has arthritis and uses a 

walker. She has had custody of her two-year-old grandson, Bobby, since his birth. When 

Bobby’s mother was arrested, she was asked if she had any children. She explained that her 

son lived with her mother. Social workers came to Louise’s house and explained that they 

were removing Bobby but he could stay three more weeks, until his third birthday, since 

there was no immediate need for removal. The social worker added that it is “textbook” that 

Bobby would be better off with a young, healthy family than a grandmother who is “old and 

handicapped.” 

Louise did her best to explain the unexplainable to Bobby—that child welfare was taking him 

and she didn’t know for sure when he could come home. Bobby was removed just after he 

turned three, and he engaged in developmentally appropriate protest for an extended period. 

The social worker viewed this as pathological; she repeatedly physically dragged Bobby 

away from Louise at the end of visitations, threatening to end contact if he did not “behave.” 

Eventually, she acted on her threat: Citing how “upsetting” visitations were and Louise’s 

104 National Council on Disability
The detrimental effects of spending 

long periods in foster care have been well 

documented. Watkins says, “Less is known 

about how children are affected by the 

termination of their relationship with their 

parents. Parental rights termination in large 

numbers is a relatively new phenomenon, and 

little research has been done with the children 

affected. However, one study indicates that 

adopted children cut off completely from their 

biological parents often experience a sense of 

profound deprivation.”468 Another study found 

that the children of parents with intellectual 

disabilities whose rights were terminated 

“experienced a deep sense of loss. Often 

the bond between the parent and child is 

especially strong. There is also the potential 

for a negative impact on the child’s selfesteem and identity. Where parental rights are 

involuntarily terminated due to some ‘defect’ 

in the parent, the child must either disconnect 

from the parent and lose part of his identity 

or maintain identification with the family 

and the concomitant identification with the 

defect, resulting in injury to his self-esteem. 

In addition, leading to less permanency rather 

than more, parental rights may be terminated 

without having an adoptive family ready to take 

the child. Children in this situation have been 

termed ‘legal orphans’ because they have no 

connection to a family, neither adoptive nor 

biological.”469

Such a child may continue to live with various 

foster parents even though he or she is legally 

free and available for a permanent placement. 

This is of special concern when the children 

themselves have disabilities. Children with 

disabilities have lower rates of adoption and, 

poor choice in feeding him candy on a visitation (she brought a marshmallow “Peep” to an 

Easter visitation) the social worker severely curtailed the visits.

At that point, Bobby became despairing and detached quite quickly. He refused to eat, and 

when he did eat, he vomited. Child welfare sent him for barium treatments to see if he 

was physically sick; he wasn’t. He was then hospitalized for an injury sustained in foster 

care. Louise was not allowed to visit, and his foster parents chose not to. Bobby spent his 

hospitalization alone in a crib with a top to prevent him from getting out, surrounded by IVs 

and other invasive equipment. Bobby was then labeled as “willful” and considered a “highneeds, difficult child.” This label was used as another reason not to return him to Louise. 

Bobby was eventually adopted; thankfully, the adoptive parents kept some contact with 

Louise. Her knowledge of his foster care history helps Bobby’s adoptive parents understand 

the psychiatric work he requires to deal with his reactive attachment disorder, claustrophobia, 

and ongoing nightmares. 

Efforts to move the court to acknowledge the discrimination and its effects met with 

complete truculence. The trial judge stated from the bench, “For the record, disability has 

nothing to do with this case.”

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 105
once adopted, have higher rates of disruption 

(the termination of an adoption proceeding 

before it is legally finalized).470 This is noteworthy 

because parents with intellectual disabilities 

are more likely to have children with intellectual 

disabilities.471 Thus, high rates of termination for 

parents with intellectual disabilities lead to more 

children with disabilities entering the adoption 

pool, where they have a strong likelihood of 

remaining orphans.

Thus, research shows that children experience 

countless detrimental consequences when 

they are removed from their home, whether 

temporarily or permanently. Watkins says, “Of 

course, each situation is unique; thus, there will 

be times when children are better off having no 

relationship with their biological parents. As a 

result, each child’s case should be individually 

scrutinized, avoiding presumption and stereotype 

based upon the parent’s status if the child’s best 

interest is to be served.”472

Conclusion

Parents with disabilities face multiple layers 

of discrimination from the moment they 

enter the child welfare system. Parents with 

disabilities, particularly intellectual or psychiatric 

disabilities, face statutes that allow the state 

to presume unfitness solely on the basis of 

their disability and to use the disability to justify 

intervention into the family and TPR. Moreover, 

while some state termination statutes require 

evidence of a link between disability and 

detriment to the child before TPR, the courts 

rarely enforce this requirement. Biased beliefs 

about the pathology of people with disabilities 

are assumed to hold true for all parents with 

disabilities. Additionally, parents with disabilities 

encounter significant barriers to meaningful 

participation and representation in their own 

legal cases. “Intervention from state social 

service agencies and dissolution of the family is 

often the final blow to parents already struggling 

under the accumulating impact of stressful and 

disempowered lives with few choices and fewer 

opportunities.”473

While parents with disabilities are especially 

affected by issues discussed here—historic 

oppression, current bias, denial of ADA-protected 

rights to accommodation and inclusion, and 

discriminatory statutes—they are not alone. 

Indeed, in no community is “the welfare of 

children...served by breaking up families based 

on fear and stereotype. If we are truly concerned 

about the welfare of children, we should invest 

more money and energy in preventive services 

for families rather than in parental rights 

termination and foster care. Our conception of 

the parent or parents as individuals, standing 

alone, without help from the broader community, 

does children no service.”474

Accordingly, several steps must be 

immediately taken to eradicate the pervasive 

discrimination that parents with disabilities 

and their children regularly encounter. States 

must eliminate from their statutes disability 

as grounds for TPR and must enact legislation 

that protects the rights of parents with 

disabilities. Congress should address the 

disparate treatment experienced by parents 

with disabilities by adding specific protections 

for parents with disabilities in the Adoption 

and Safe Families Act. Further, Congress 

should shift funding priorities at the federal 

level so that states have a greater incentive to 

provide services to families while the children 

are maintained in the home, as research has 

shown that in-home services are most effective, 

106 National Council on Disability
particularly for people with disabilities. DOJ 

should issue guidance to states—namely child 

welfare agencies and dependency courts—on 

their legal obligations pursuant to the ADA. 

HHS and DOJ should gather data on parents 

with disabilities and their interactions with 

child welfare and dependency court systems. 

In addition, DOJ, in collaboration with HHS, 

must investigate all reported allegations of child 

welfare agencies or dependency courts that 

violate the ADA and must enforce the law as 

appropriate.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 107
108 National Council on Disability
A Winnebago mother who has intellectual 

disabilities faces termination of parental 

rights to her six-year-old son on the basis 

of speculation about her capacity to help her 

child with homework and provide discipline in 

the future. A Cherokee father is told that his mild 

and controlled psychiatric disability is grounds 

for his infant daughter’s removal to a non-Indian 

foster home with no finding of neglect or abuse. 

A Pomo mother and Blackfoot father, both with 

physical disabilities, are denied services for 18 

months to reunify with their child, who was 

removed from them at birth. An Alaskan Native 

mother and grandmother are informed that they 

are “unfit” to retain custody of the family toddler 

because of the grandmother’s physical disability 

and the mother’s intellectual disabilities. At stake 

in these cases are more than just the breaking 

hearts of children and parents. These cases tear 

at the dignity of people with disabilities, the 

welfare of Native American families, and the very 

fabric and future of sovereign Native American 

nations. 

The Tribal Context: A Brief Overview

There are 565 federally recognized Indian tribes, 

living in 326 reservations, rancherias, villages, and 

urban Indian communities nationwide.475 Indian 

tribes are sovereign entities that have a nation-tonation relationship with the federal government. 

That relationship and their relationships to state 

and local governments are highly circumscribed 

by statutory and case law. Most of these tribes 

have some form of executive, legislative, and (in 

150 tribes) judicial systems, in the form of tribal 

courts.476 They also have independent social and 

health services funded through a complex web 

of federal, tribal, and state monies. Although 

underfunded, many tribal courts are developed 

enough to provide a child welfare court. However, 

many others are not. Moreover, even when the 

court exists, 61 percent of Native American (NA) 

people live outside of the jurisdictional boundaries 

of their tribe.477 This means that child welfare 

cases involving NA families frequently occur in 

state child welfare courts and rely on state and 

local social services in the child welfare process. 

The History of Native Americans and 

Child Welfare

A Native American family that includes a parent 

with a disability combines two of the most 

historically oppressed populations in American 

history. Between 1978 and 1990, sweeping 

federal laws were enacted—the ADA and the 

Indian Child Welfare Act—that recognized the 

need of both populations for protection after 

many decades of relentless, systemic violation 

of their human and civil rights. The Indian 

Child Welfare Act of 1978 (ICWA) was passed 

Chapter 6.  Parental Disability and Child Welfare in t

Native American Community

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 109
in response to the fact that 25 percent to 

35 percent of all Native American children were 

being systematically removed from their homes 

and adopted into European American homes.478

In passing ICWA, Congress declared “that there 

is no resource that is more vital to the continued 

existence and integrity of Indian tribes than their 

children and... that an alarmingly high percentage 

of Indian families are broken up by the removal, 

often unwarranted, of their children from them by 

nontribal public and private agencies.”479

The Statistics

In a 17-state survey conducted by TLG, there was 

a 26.5 percent rate of disability among Native 

American caregivers 

from whom the child 

welfare system removed 

children. The number 

is shockingly high, yet 

it makes sense. The 

disability rate among 

Native Americans 

between the ages 

of 16 and 64 is 27 percent, compared with 

18 percent in the general U.S. population.480 As 

discussed in Chapter 5, child welfare removal 

rates are disproportionately high for parents with 

disabilities. Similarly, Native American children 

are overrepresented in child welfare systems 

wherever they reside.481 While Native Americans 

are only 0.8 percent of the total U.S. population,482

they constitute 1.7 percent of the child welfare 

caseload nationally, a vast overrepresentation.483

Native Americans and African Americans are more 

likely than all other U.S. groups to be investigated 

by child welfare, to have allegations of abuse or 

neglect substantiated, and to have their children 

removed and placed in foster care.484

Summary of the Indian Child 

Welfare Act

ICWA applies whenever a parent is legally 

restricted from accessing his or her child if the 

child is enrolled or eligible for enrollment with 

a federally recognized Indian tribe.485 The most 

significant class of cases to which ICWA applies 

are child welfare cases. Theoretically, ICWA 

should protect children of parents with disabilities 

and their families. Caseworkers in ICWA-governed 

cases must take the following actions:486

■ Provide active efforts to the family.

■ Identify a placement that fits under the 

ICWA preference provisions.

■ Notify the child’s 

tribe and the child’s 

parents of the child 

custody proceeding.

■ Actively involve the 

child’s tribe and the 

child’s parents in the 

proceedings.

Unfortunately, the reverse tends to occur 

when the ADA and ICWA intersect. Instead of 

ICWA strengthening the protections for parents 

with disabilities, the parent’s disability appears to 

undermine the protection ICWA is designed to 

provide. 

The Intersection of the ADA and ICWA

These two laws and populations are increasingly 

intersecting in child welfare cases in state 

courts. In a recently concluded study entitled 

The Perspective and Demographics of Parents 

Contacting Through the Looking Glass Regarding 

Custody Issues, Native Americans made up 

5 percent of all participants.487 This is six times 

In a 17-state survey conducted by 

TLG, there was a 26.5 percent rate

of disability among Native American 

caregivers from whom the child 

welfare system removed children

110 National Council on Disability
the percentage of Native Americans in the U.S. 

population.488 This result prompted the primary 

investigator to conduct an informal survey of 100 

child welfare appeals cases in which the child 

claimed to be Indian within the meaning of the 

ICWA and the child or a parent had a disability. 

She found that in 19 percent of the cases, the 

child was in fact Indian 

and the parent’s disability 

was a factor in the case. 

In tribal courts, neither 

the ADA nor ICWA 

applies automatically 

to the activities of 

tribal governments, 

because these are sovereign nations.489 However, 

many tribes incorporate ICWA into their own 

legislation and attempt to enforce its provisions 

in state court, where tribes have standing in child 

welfare cases involving their citizen children. 

Understandably, they are no more sophisticated 

than the general population of professionals in 

their understanding of how the ADA applies to 

cases involving parental disability. As a result, 

they may endorse as “active” efforts that fail even 

to reach the level of “reasonable”: services not 

accommodated for the disability of the parent. 

Moreover, they are vulnerable to the same 

assumptions regarding lack of capacity as other 

professionals who do not understand the types 

of services, equipment, and techniques that can 

support good parenting with this population. 

Lack of Services

We could not find a disability or Native American 

organization that provides any services specific 

to parents with disabilities, culturally relevant or 

otherwise. Lack of services has been identified 

as a factor in decisions to substantiate allegations 

of abuse or neglect.490 It is known that a serious 

barrier to success in child welfare is the lack of 

service providers, especially in rural areas,491

and that overinvolvement in child welfare is a 

significant indicator of insufficient services for 

parents with and without disabilities.492 This is of 

special concern in the context of Native American 

communities because, in 

the words of researchers 

Harris and Hackett, 

“Racial inequity in service 

availability and service 

delivery has been found 

to be the strongest 

contributing factor in 

disproportionate numbers of children of color in 

placement with child welfare.”493

Need for Culturally Relevant Services 

and Training

Because of the complex funding scheme for 

Native American services, delivery systems look 

different in Indian country than they do in nonNative counties or municipalities. Differences 

also exist between service delivery systems on 

different reservations and between reservation and 

urban settings. Five basic service systems should 

“touch” child welfare cases in which parental/

caregiver disability is involved: (1) tribal lawyers, 

judges, law enforcement, ICWA specialists, social 

workers, and foster care system staff working 

in the context of child welfare cases; (2) mental 

health and independent living/skills training staff; 

(3) occupational therapists and rehabilitation staff; 

(4) medical staff who work with expectant mothers 

or in delivery settings; and (5) early intervention, 

Early Head Start/Head Start, and family wellness 

program staff who serve families in education, child 

care, or abuse/neglect prevention. 

In tribal courts, neither the ADA nor 

ICWA applies automatically to the 

activities of tribal governments, 

because these are sovereign nations

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 111
Services and training capacity must be 

developed with an eye toward cultural relevance 

and practical utility in the community. For 

example, although each tribe is unique, many 

Native American cultures share a concept of 

family very different from that of mainstream 

society. In Native American culture, the extended 

family, clan, and larger community have various 

levels of rights and responsibilities for tribal 

children. Similarly, traditional Native American 

views of disability—its causes and implications—

are generally dissimilar to views in non-Native 

communities. In fact, most tribal languages have 

no term for disability, 

and the idea has no 

direct parallel in Native 

cultures.494

Regarding successful 

child welfare projects 

in Indian country, a substantive examination by 

the National Indian Child Welfare Association 

stated:

“What can be brought to a community is 

help with problem-solving skills and strategies, facilitation of a community development process, and sharing of technical 

information or knowledge to show people 

how to achieve their own goals.”495

Emerging organizations such as the Bay Area 

Collaborative on American Indian Resources and 

the National Urban Indian Family Coalition, along 

with existing Native American disability services, 

are starting to provide technical information and 

knowledge about parents with disabilities and 

how to support them in their own communities. 

Long-standing organizations such as the Native 

American Independent Living Services (which 

serves American Indian/Alaskan Native people in 

New Mexico) and the Native American Disability 

Law Center (which works with the Pueblo 

communities in the Southwest) are the kinds of 

partners from whom advocates in the field of 

disability/parenting could benefit. 

Need for Data Collection

Tribal courts are often left out of data collection 

on child welfare matters. In fact, the National 

Child Abuse and Neglect Data Set—a significant 

national database that collects information on 

the causes and demographics of child welfare 

system consumers—does not include any tribal 

court information. 

Conclusion

It is imperative for the 

future of sovereign 

Native American nations 

that their families be preserved. Addressing the 

intersection of disability in ICWA cases with 

training and support services developed for 

both reservation and urban Indian communities 

could play a significant preservative role. It is 

not necessary that the ADA be legislated into 

tribal law, although tribal law acknowledging the 

need to retain nonpathological views of people 

with disabilities would be useful. Instead, tribes 

need to be supported in (1) developing culturally 

relevant supportive services to prevent the 

entry of their families into child welfare systems 

or increase the likelihood of good outcomes 

when they do have to deal with these systems; 

(2) having policies and guidelines to inform 

their course of action when they recognize that 

attitudinal bias is influencing the state child 

welfare process; and (3) recognizing when the 

ADA should be, but is not being, implemented 

appropriately in these cases. 

[M]ost tribal languages have no 

term for disability, and the idea has 

no direct parallel in Native cultures

112 National Council on Disability
This chapter explores the family law 

system’s treatment of parents with disabilities 

and their families involved in custody and 

visitation disputes. It begins with a brief 

overview of the family law system, as it relates 

to custody and visitation disputes, followed by 

an examination of the discriminatory practices 

in the system. Next, the chapter analyzes the 

Chapter 7.  The Family Law System: Custo

and Visitation

Parents’ Stories: Kaney O’Neill

I

n September 2009, Kaney O’Neill, a veteran and quadriplegic mother, faced an unexpected 

battle when her former boyfriend filed for custody of their 10-week-old son, alleging that 

Kaney was “not a fit and proper person” to care for their son and that her disability “greatly 

limits her ability to care for the minor, or even wake up if the minor is distressed.”496

Refuting this allegation, Kaney demonstrated her ability to care for their son. Indeed, she had 

prepared for motherhood by working with an occupational therapy program for expectant 

mothers and parents, adapting her house for parenting, securing adapted baby care 

equipment, and using personal assistants to help her as needed.497

Illustrating the bias that pervades the family law system, an attorney who was not affiliated 

with the case remarked, “Certainly, I sympathize with the mom, but assuming both parties 

are equal (in other respects), isn’t the child obviously better off with the father?”498 This 

attorney, who has specialized in divorce and custody cases for more than 40 years, said that 

Kaney “would likely not be able to teach her son to write, paint or play ball.”499 The attorney 

asked a news reporter, “What’s the effect on the child—feeling sorry for the mother and 

becoming the parent?”500

Parents with disabilities often face such sentiments. Kaney’s battle endured for a yearand-a-half before both parties came to an agreement that gives the father visitation 

rights.501 Although she was elated with the outcome, Kaney told reporters that she was 

“...disappointed that the courts allow for someone to question your ability to have custody 

based on your disability.”502

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 113
patchwork quilt of state laws, many of which 

overtly discriminate against parents with 

disabilities. This chapter then discusses the family 

law system’s bias, speculation, and the arbitrary 

“best interest of the child” standard. It concludes 

with a discussion of the significant barriers 

parents with disabilities and their families face 

in securing legal representation and meaningful 

participation in their cases, as well as the impact 

of the family law system on children.

The Family Law System: A Brief 

Overview

The family law system deals with a variety 

of domestic relation matters, such as 

marriage, divorce, domestic abuse, prenuptial 

agreements, child support, and child custody 

and visitation. This chapter focuses on the family 

law system’s involvement in child custody and 

visitation.

The Constitution protects the fundamental 

right to parent without interference from the 

state, and case law has established that unfitness 

must be proved before TPR by the state in child 

welfare. However, when parents are unable to 

reach a custody or visitation agreement between 

themselves, the family law courts are left to 

decide child custody without the constitutional 

mandates, based on the best interest of the 

child standard. Family law cases are governed 

by individual state statutes. Most states have 

developed their own factors to determine which 

custody arrangement is in the best interest of 

the child. In making child custody and visitation 

decisions, family courts typically try to determine 

which parent is more likely to fulfill the child’s 

physical, emotional, intellectual and basic health 

and safety needs. 

Disability Law and the Family Law 

System

Section 504 of the Rehabilitation Act and Title 

II of the ADA mandates access to family law 

courts. Indeed, DOJ considers court actions to 

be “state activity” for purposes of the ADA. In 

addition, entities that receive federal financial 

assistance from DOJ, including state judicial 

systems, are prohibited from discrimination 

on the basis of disability under Section 504 of 

the Rehabilitation Act.503 The Supreme Court 

has held that providing people with disabilities 

with access to courts is a mandate of Title II. 

According to the Court, “Unequal treatment of 

disabled persons in the administration of judicial 

services has a long history,” which the ADA has 

sought to redress.504

Family law courts:

■ Must provide parents with disabilities 

with an equal opportunity to participate 

in programs, services, and activities.505

To implement this mandate, the courts 

must make reasonable modifications in 

policies, practices, or procedures unless 

such modifications would fundamentally 

alter the nature of the service, program, or 

activity.506

■ Should administer services, programs, and 

activities in the most integrated setting 

appropriate to the needs of qualified people 

with disabilities.507

■ May not impose or apply eligibility criteria 

that screen out or tend to screen out any 

person with a disability from fully and 

equally enjoying any service, program, or 

114 National Council on Disability
activity, unless such criteria can be shown 

to be necessary for the provision of the 

service, program, or activity being offered.508

■ Must furnish auxiliary aids and services 

when necessary to ensure effective 

communication, unless an undue burden or 

fundamental alteration would result.509

■ May provide benefits, services, or 

advantages beyond those required by the 

regulation to people with disabilities.510

■ May not impose surcharges on people with 

disabilities to cover the costs of measures 

to ensure nondiscriminatory treatment, such 

as making necessary modifications required 

to provide program accessibility or providing 

qualified interpreters.511

■ May not deny the benefits of programs, 

activities, and services to people with 

disabilities because entities’ facilities are 

inaccessible.512

In addition, programs and activities, viewed in 

their entirety, must be readily accessible to and 

usable by people with disabilities.513

Title III of the ADA is also relevant, as it 

governs private attorneys and most court 

evaluators. Private attorneys and mostevaluators:

■ Shall not impose or apply eligibility criteria 

that screen out or tend to screen out a 

person with a disability from fully and 

equally enjoying any goods, services, 

facilities, privileges, advantages, or 

accommodations, unless such criteria 

can be shown to be necessary for the 

provision of such goods, services, and 

so on.514

■ Make reasonable modifications in policies, 

practices, or procedures when such 

modifications are necessary to ensure that 

people with disabilities have access to 

the goods, services, facilities, privileges, 

advantages, or accommodations, unless 

they can demonstrate that making the 

modifications would fundamentally alter 

the nature of such goods, services, and 

so on.515

■ Shall take the necessary steps to 

ensure that no person with a disability is 

excluded, denied services, segregated, 

or otherwise treated differently 

because of the absence of auxiliary 

aids and services, unless they can 

demonstrate that taking those steps would 

result in a fundamental alteration or undue 

burden.516

The System Parents with Disabilities 

and Their Families Are Likely to 

Experience

More than half of American families will 

experience legal separation or divorce.517 Parents 

Family Law System

■ Marriage

■ Divorce

■ Domestic abuse

■ Prenuptial agreements

■ Child support

■ Child custody and visitation

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 115
with disabilities who become involved in the 

family law system for adjudication of custody 

or visitation disputes do not expect a pleasant 

experience; however, they are often shocked at 

the bias they encounter in the system.

Such bias was apparent in the 1979 case In 

re Marriage of Carney,

518 which is among the 

most widely recognized decisions to address 

the custody rights of parents with disabilities. In 

this case, the mother of two children petitioned 

the courts to have a previous custody order 

changed because the father had sustained a 

spinal cord injury and had quadriplegia. The lower 

court granted the mother’s motion to change 

custody, having determined that because of 

the father’s disability, his relationship with his 

children would no longer be “normal.” The father 

appealed the decision, and the case was heard 

by the California Supreme Court. The California 

Supreme Court reversed the trial court’s decision, 

stating that the father’s disability did not suggest 

a lesser ability to be a good parent to his children. 

The court felt strongly that the parent-child 

bond was not merely the ability to engage in 

physical interaction, and thus the father should 

not have his parental rights severed or reduced 

simply because of his disability. In reaching this 

landmark decision, the court stated:

“On a deeper level...the stereotype [about 

parents with disabilities] is false because it 

fails to reach the heart of the parent-child 

relationship. Contemporary psychology confirms what wise families have perhaps always known—that the essence of parenting 

is not to be found in the harried rounds of 

daily carpooling endemic to modern suburban life, or even in the doggedly dutiful acts 

of ‘togetherness’ committed every weekend by well-meaning fathers and mothers 

across America. Rather, its essence lies in 

the ethical, emotional, and intellectual guidance the parent gives to the child throughout his formative years, and often beyond. 

The source of this guidance is the adult’s 

own experience of life; its motive power 

is parental love and concern for the child’s 

well-being; and its teachings deal with such 

fundamental matters as the child’s feelings 

about himself, his relationships with others, 

his system of values, his standards of conduct, and his goals and priorities in life.”519

Of the Carney decision, Dave Shade says, 

“Although it was overturned, the trial court’s 

decision paints an all-too-familiar picture of the 

parent with a disability: unable to provide care, 

unable to provide love, unable to be a parent.”520

Although the higher court in Carney held 

that a parent’s disability should not be a factor 

in determining custody, this view has not been 

consistently enforced. Many parents continue to 

experience discrimination in child custody and 

visitation cases, and published court opinions 

reflect an ambivalent approach to deciding 

custody and visitation disputes in which a parent 

has a disability. The frequency and significance 

of family law issues was demonstrated in 2008, 

when the TLG legal program completed a study 

of 200 cases concerning a parent with a disability 

involved in child custody litigation and found that 

that largest number of calls (44 percent) came 

from parents who were involved with the family 

law system.521

Parents with disabilities encounter pervasive 

discrimination in child custody and visitation 

disputes. For example, in the summer of 2011, 

a custody dispute concerning a mother with 

stage IV breast cancer made headlines. In this 

case, which reached the Supreme Court of North 

116 National Council on Disability
Phoebe Ball, NCD Legislative Affairs 

Specialist, hugs her daughter, Sophia, 

in a candy store.

Carolina, a judge ruled that the children must live 

with their father, in part because of their mother’s 

breast cancer diagnosis.522 A psychologist who 

evaluated the couple as part of the custody 

proceedings sided with the father. Nonetheless, 

she said she had reservations about the 

decision because “she did not know for sure 

whether it would be better for the children to 

be with [the mother] in the last year or years 

of her sickness.”523 In response to this case, a 

family attorney told a news reporter, “Medical 

conditions and their potential consequences 

on parents often are factors in custody and 

divorce proceedings. Weighing the possibility of 

a parent’s deteriorating condition or premature 

death might sound terrible to parents, but they 

are valid questions the court must consider.”524

The issue of “normal” reared its ugly head in 

this case, when the judge cited a psychologist’s 

testimony: “The more contact [the children] have 

with the non-ill parent, the better they do.525

They divide their world into the cancer world and 

a free-of-cancer world. Children want a normal 

childhood, and it is not normal with an ill parent.” 

Further, according to Courtney Hutchison, ABC 

News Medical Unit, “In accordance with the 

Uniform Marriage and Divorce Act, it is not 

uncommon for family court to take into account 

the health, both physical and mental, of a parent 

in making custody decisions.”526

In another example of how the family law 

system treats parents with disabilities, “A 

judge maintained that a mother with a physical 

disability could not parent despite findings 

of psychological and occupational therapy 

evaluations documenting her capability. He 

assumed that the children would function as her 

attendants, though the mother was independent, 

there was personal assistance to meet her 

needs, the home was modified with adaptations, 

and her children had only the usual household 

chores. There were concerns about how quickly 

she could get upstairs in an emergency. When 

her ability to get upstairs was demonstrated, 

the next demand [by the judge] was to test her 

speed with a stopwatch.”527

As recent cases illustrate, despite the 1979 

Carney decision, parents with disabilities often 

face disparate treatment in the family law 

system. Certainly, Carney “articulated a standard 

vis-à-vis parents with physical disabilities to which 

a number of other states have hewn. Even in the 

context of stigmatized illnesses, such as infection 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 117
with human immunodeficiency virus (HIV), courts 

generally have been inclined to rule in favor of 

custody or visitation, absent proof of some direct 

risk to the child’s well-being.”528 Appellate cases 

that involve parents with sensory disabilities, 

such as blindness and deafness, indicate an 

approach similar to the Carney line of cases.529

However, recent cases demonstrate that parents’ 

disabilities are still often raised as an issue. 

In custody and visitation cases involving 

parents with intellectual or developmental 

disabilities, the family law system demonstrates 

an ambivalent approach. A North Dakota case 

reveals a disturbing lack of basis for limiting a 

parent with an intellectual disability custody and 

access to her child. In Holtz v. Holtz,

530 the trial 

court heard evidence and argument regarding 

the need for changing custody from a custodial 

mother with a developmental disability, dyslexia, 

and a learning disability. The father sought 

primary physical custody, despite admitting that 

he had had almost no contact with his 7-year-old 

child prior to the lawsuit. The trial court’s stated 

basis for granting the father custody was that the 

mother had a “mental incapacity to develop as 

[the child] grows....Therefore, [she] would not be 

capable or competent to raise the minor child....” 

Using a “clearly erroneous” standard of review, 

the state Supreme Court found that there was 

no reversible error. The decision was affirmed 

despite the court’s acknowledgment that no 

expert evidence established the parameters of 

the mother’s disabilities at the time of the divorce 

(though the parenting aide and guardian ad litem 

gave evidence). That is, the trial court did not 

make an explicit connection between the child’s 

best interest and the mother’s parenting skills, 

but the North Dakota Supreme Court upheld the 

trial court’s determination.531

While the family court in Abbie’s case 

ultimately ruled in her favor, many parents 

with cognitive disabilities are not as fortunate. 

Lindsay,537 a mother of two children, was 

astonished when she learned how the family law 

system viewed her disability. Like Abbie, Lindsay 

has an acquired brain injury. Although Lindsay had 

had custody for a while, the father of her children 

wanted to establish a more formal agreement. 

During the mediation, she was astounded by the 

focus on her disability, especially given that she 

Parents’ Stories: Abbie Dorn

Recently, in a highly publicized case, the 

courts addressed the visitation rights of a 

mother with a disability. Abbie Dorn acquired 

a severe brain injury in 2006, after delivering 

triplets.532 In March 2011, after a lengthy 

battle, Abbie was granted five-day visits 

annually with her children, as well as monthly 

30-minute Skype sessions to maintain a 

parental relationship.533 In the ruling, the 

judge noted that when the children were 

granted a visit with their mother the previous 

December, they immediately established a 

bond with her.534 As evidence, the judge noted 

that the children would physically hold on to 

photographs of their mother that they were 

given after the visit for long periods of time.535 

According to the ruling, “The court finds 

that even though Abbie cannot interact with 

the children, the children can interact with 

Abbie—and that the interaction is beneficial 

for the children. They can touch her, see her, 

bond with her, and can carry these memories 

with them.”536

118 National Council on Disability
had had custody without any problems. Lindsay’s 

physicians and friends were deposed about 

her disability. Beaten down by her experiences 

with the family law system, Lindsay ended up 

relinquishing her custody rights and now has only 

visitation with her children.

The attitudinal bias that is obvious in 

cases involving parents with intellectual and 

developmental disabilities or cognitive disabilities 

is even more striking in custody and visitation 

cases involving parents with psychiatric disabilities. 

According to Kirshbaum, Taube, and Baer:

“Parents with current psychiatric disabilities—

whether minor or major—are more likely, 

however, to have such disabilities considered 

and used, at least in part, to decide custody in 

favor of the nondisabled parent...[I]n a recent 

case involving an allegation of a change in circumstances, the Supreme Court of North Dakota upheld the trial court’s determination that 

a mother experiencing depression secondary 

to fibromyalgia and migraine headaches 

should lose physical custody of her three children to their father. The court so held on the 

basis of an expert mental health professional’s 

testimony that the oldest child was ‘becoming 

destructively parentified’ (that is, ‘assuming 

adult responsibilities and acting as a care 

provider for younger siblings’) because of the 

mother’s disabilities. This change of custody 

is unusual, given the typical reticence shown 

by appellate courts to disturb ongoing custody 

arrangements absent significant effects on 

children, and the fact that ‘parentification’ is a 

theoretical concept for which little, if any, empirical verification exists.”538

Another example of the use of persistent 

social stereotypes and prejudicial assumptions 

can be found in discussions regarding parents on 

the autism spectrum. These parents are subject 

to many of the same unfounded stereotypes, 

claiming incapability to parent or risk of violence, 

which parents with intellectual and psychiatric 

disabilities encounter. Additionally, parents on the 

autism spectrum are often presented as uncaring 

or lacking empathy toward their children or 

spouses.539 Despite research showing these claims 

to be inaccurate, they persist in guidance provided 

to family law professionals regarding autism and 

Asperger’s syndrome (a type of autism).540 For 

example, a 2003 article by a family law professional 

made the case that in high-conflict divorces in 

which one party has a diagnosis of Asperger’s, 

the fault should be presumed to lie predominantly 

with the autistic parent, even if evidence suggests 

otherwise.541 The long-term consequences of 

these stereotypes are significant—some parents 

who are on the autism spectrum have said that 

fear of discrimination in child custody proceedings 

keeps them from leaving relationships with abusive 

partners.542

As these cases demonstrate, even 33 years 

after Carney, parents with disabilities continue to 

face discriminatory practices, reflecting attitudinal 

bias on the part of the family courts. As noted 

by Jennifer Spreng, professor at Phoenix School 

of Law, a “‘well’ father or husband can have an 

advantage in obtaining custody even if he is an 

inferior caregiver or has maltreated the children 

himself.”543

Bias, Speculation, and the “Best 

Interest of the Child” Standard

As previously mentioned, family courts use the 

best interest of the child standard to decide 

custody matters. Most states have developed 

their own list of factors to determine which 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 119
custody arrangement 

would be in the best 

interest of the child.544

Typical factors include 

which parent best meets 

the physical, emotional, 

intellectual and basic 

health and safety needs 

of the child; what does 

the child want (if the age 

and maturity of the child render an expressed 

desire reliable); length of the current custody 

arrangement and whether it is positive; whether 

the alternative arrangement is suitable and 

stable; primary caretaking history; evidence of 

domestic violence or substance abuse; evidence 

of lying to the court about domestic violence 

or other matters; whether either placement 

involves a significant other with history of 

violence or dependency issues. The best 

interest analysis always allows for a parent’s 

own ‘health’ to be considered.545

Kirshbaum, Taube, and Baer note, “Despite 

the disability civil rights movement, attitudinal 

bias regarding disability is still prevalent.”546

Unfortunately, “legal, medical, and mental health 

professionals are not immune to these biases. 

Negativity and a lack of cultural competence 

about disability are reflected in language 

appearing in unpublished court documents and 

evaluations, such as ‘afflicted with dwarfism,’ 

‘wheelchair bound,’ ‘suffers from physical 

disability.’”547

The best interest of the child standard has been 

criticized for giving too much discretion to trial 

courts and for allowing judicial bias to affect custody 

and visitation decisions, which often has significant 

and detrimental consequences for parents with 

disabilities and their children.548 Breeden, Olkin, and 

Taube believe that the 

best interest of the child 

standard is too vague and 

offers little guidance to 

courts and evaluators.549

According to Kirshbaum, 

Taube, and Baer:

“The near absence of 

explicit rules addressing bias in the assessment of parents with 

Negativity and a lack of cultural 

competence about disability are 

reflected in language appearing 

in unpublished court documents 

and evaluations, such as ‘afflicted 

with dwarfism,’ ‘wheelchair bound,’ 

‘suffers from physical disability.’

Factors Used to Determine Best 

Interest of the Child

1. Which parent best meets the physical, 

emotional, intellectual and basic health and 

safety needs of the child; 

2. What does the child want (if the age and 

maturity of the child render an expressed 

desire reliable); 

3. Length of the current custody 

arrangement and whether it is positive; 

4. Whether the alternative arrangement is 

suitable and stable; 

5. Primary caretaking history; 

6. Evidence of domestic violence or 

substance abuse; 

7. Evidence of lying to the court about 

domestic violence or other matters; 

8. Whether either placement involves a 

significant other with history of violence 

or dependency issues; 

9. Parent’s own ‘health’ 

120 National Council on Disability
disabilities in statutes, rules of court, and 

professional standards gives few grounds 

upon which appellate courts can address 

common problems of bias against parents 

with disabilities at the pretrial and trial court 

level. In addition, appellate court cases 

themselves show signs of bias against parents with disabilities, although they are subtle. Further, one can observe increasingly 

biased assumptions as the appellate courts 

move from cases involving obvious physical 

disabilities (e.g., a person with paraplegia 

who uses a wheelchair) to those with more 

subtle or stigmatized disabilities, such as 

cognitive or psychiatric disabilities. That is, 

custody cases involving physical disabilities 

tend to give the impression that appellate 

courts are giving careful consideration to 

parenting capacities and the best-interest 

standard. On the other hand, custody cases 

involving cognitive or mental disabilities are 

more suggestive of biased assumptions 

about the effects of such disabilities on parenting capacities.”550

Cases frequently reflect underlying 

presumptions that it is not in a child’s best interest 

to live with—or in some cases even visit—a parent 

with a disability.551 Custody and visitation decisions 

also reflect patterns of increased attitudinal bias 

regarding certain disabilities.552 Kirshbaum, Taube, 

and Baer found that “negative speculations about 

the future are common and often seem to be 

based on stereotypes rather than on evidence.”553

Furthermore, courts often assume that children 

will be forced to provide care to their parents with 

physical disabilities, which is in stark contrast to 

what researchers have consistently found.554

Parents’ Stories: Paul

Paul’s story demonstrates the gravity of the situation faced by many parents with disabilities 

who are involved in the family law system.555 Paul was a father with quadriplegia and a stayat-home parent for his three-year-old son Leo. He had spent 20 years as a police officer and 

became quadriplegic when he was shot on the job. Although Paul used walking canes, his 

active son was safe in his care. He had door alarms on the doors and bookcases in case Leo 

tried to climb or leave the house. An ingeniously installed alarm system triggered if Leo tried 

to leave the yard. Leo had never been hurt or gotten away as a result of Paul’s disability. Then 

Leo’s mother filed for divorce, moved out, and filed for full physical custody. She asserted 

that quadriplegia rendered Paul unable to care for Leo. 

Despite uncontested testimony that Paul had always been the primary parent, the Georgia 

family law court awarded temporary custody to the mother, with severely limited visitation 

to Paul. Twenty-four-hour supervision was required during the visitation periods, and Paul 

was ordered to hire a professional nanny to supervise visitations. Over the next two years of 

litigation, Paul went through a significant portion of his disability retirement fund paying for 

attorneys, private nannies, interim child support, and assessments. 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 121
Parents with intellectual disabilities are not 

immune to the negative effects of bias and the 

best interest of the child standard used in the 

family law system. In fact, several researchers, 

including attorney Duffy Dillon, contend that 

parents with intellectual disabilities are in an even 

more vulnerable position at these proceedings 

than during dependency cases.556 Fewer 

procedural protections are afforded to parents with 

intellectual disabilities in the context of divorce.557

Because the best interest standard governs from 

the beginning, parents with intellectual disabilities 

“are explicitly denied both an initial fitness analysis 

and the opportunity to rehabilitate their parenting 

skills before a final decision is made. Moreover, 

unlike termination proceedings, divorces involve 

additional (presumably ‘fitter’) parties who also 

vie for the child’s custody. Since the best interest 

standard requires as little disruption in the child’s 

life as possible, pressure exists to make a decision 

sooner rather than later. Consequently, although 

divorce courts unquestionably give serious 

consideration to their custody decisions, decisionmakers might gloss over the grave issues that 

arise in termination proceedings when they arise 

in divorce.”558

Parents’ Stories: Andrew

Parents with psychiatric disabilities often encounter similar bias, as demonstrated by 

Andrew’s experiences.559 Andrew is a Korean-American father in New York who has bipolar 

disorder. He relied on his wife and extended family to help him parent his two young 

children, Clayton, seven, and Katie, four. His wife decided to move out, taking Clayton and 

Katie. Her pleadings began by discussing Andrew’s mental health history. Although Andrew 

was stable, this biased the court. Then he became overstimulated by the emotional intensity 

of the courtroom—flustered, inarticulate, and loud, and unable to make eye contact. The 

court granted him very limited, supervised visitation. 

He and his attorney concluded that the only way to show parental capacity was with an 

Adapted Baby Care Assessment. No occupational therapist was able to do the assessment 

in their area, so a therapist from TLG flew to Georgia, conducted the assessment, completed 

and submitted a court report, and appeared in court to defend it at trial. Paul won half 

custody of Leo with no requirement of supervision. While grateful, he was sad that he had 

missed a great deal of his son’s life. Both he and Leo experienced tremendous grief during 

the long periods of court-ordered separation.

122 National Council on Disability
Thus, even in cases where the parent 

with a disability eventually wins, he or she 

may lose. These parents face an arduous and 

expensive task to prove their ability to care 

for their children, even when they have been 

doing so before the proceedings without any 

problems. Duffy Dillon notes, “Although the 

best interest standard necessarily requires a 

comparison of two parents, a presumption 

cannot exist that a disabled parent is per se 

the weaker parent.”560 As discussed next, the 

family law system—as well as parents with 

disabilities and, more important, their children—

would greatly benefit from the development 

of protections for parents with disabilities 

that counter the current bias, speculation, and 

discriminatory application of the best interest of 

the child standard.

The Patchwork Quilt of State Laws

From state to state, statutory criteria for 

the award of custody vary considerably, but 

all states use the best interest of the child 

standard.561 In an effort to clarify the meaning 

of this standard, most states have adopted, 

at least in part, the model custody language 

proposed by the Uniform Marriage and Divorce 

Act.562 Several states have expanded the best 

interest standard and the model statute to 

include a wide range of factors for the courts to 

consider in making custody determinations.563

Some states leave it to the courts to determine 

the factors that constitute a child’s best 

interest.564 All states allow—and a number 

mandate—consideration of a parent’s physical 

and mental health.565

After the first visit, the mother filed a police report stating that Andrew was “crazy” and 

abused the children. Her attorney filed to suspend visits pending investigation and won. 

The judge noted concern regarding the allegation of abuse in combination with Andrew’s 

diagnosis. This became the pattern, repeating over months. Andrew’s therapist contacted 

TLG’s legal program, which supported her in filing a motion to have one of its therapists 

supervise visits and provide intervention services with Andrew and the children. The 

therapist had expertise in family systems and psychosocial disability and parenting. She met 

regularly with Andrew and his children for weeks in their home and in the community. She 

believed that Andrew was not abusive and did not require supervision. 

Her report submission coincided with the final allegation of abuse. The mother alleged that 

Andrew sexually abused Clayton in a mall bathroom during an afternoon visit. Fortunately, 

surveillance camera footage was available, and the police determined that Andrew never 

took Clayton into a mall bathroom. With proof that this allegation was false and a positive 

report from the therapist, the court granted unsupervised visits. 

Andrew’s family was unable to absorb the financial and emotional strain and believed that 

it was all too much for Andrew; that he would decompensate over time from the stress. 

They refused to allow visits or overnights at their home. Andrew does not feel able to live 

independently, so he has lost contact with his children.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 123
Many states remain silent on the issue 

of whether a parent’s disability should affect 

child custody and visitation matters. Further, 

many states do not have adequate laws 

to protect parents with disabilities in child 

custody proceedings. Omission or inadequacy 

of protections for parents with disabilities 

coupled with an amorphous judicial standard 

leave parents with disabilities in family court 

exposed to unnecessary, often expensive, 

litigation. This is true even when the person 

with the disability has successfully parented for 

many years.

Fortunately, there has been moderate progress 

in child custody laws for parents with disabilities. 

For example, in August 2010, California Governor 

Arnold Schwarzenegger signed SB 1188; the 

law, which went into effect on January 1, 2011, 

codifies Carney, shifting the burden of proof onto 

the parent who raises the disability as an issue 

and states that disability cannot form the basis 

of custody or visitation orders “unless that party 

establishes by clear and convincing evidence that 

a grant of custody or visitation to the disabled 

parent would be detrimental to the health, safety, 

and welfare of the child.”

Similarly, Minnesota Statute 518.17 addresses 

the issue of disabilities of a proposed child 

custodian. This statute states that the court can 

consider and evaluate the mental and physical 

health of all persons involved, “except that a 

disability...of a proposed custodian or the child 

shall not be determinative of the custody of the 

child, unless the proposed custody arrangement 

is not in the best interest of the child.”

Idaho has passed the most extensive and 

thorough protections for parents with disabilities, 

including in family law cases. Idaho Statute 32-

717 states:

“If the parent has a disability as defined in 

this section, the parent shall have the right 

to provide evidence and information regarding the manner in which the use of adaptive 

equipment or supportive services will enable 

the parent to carry out the responsibilities 

of parenting the child. The court shall advise the parent of such right. Evaluations of 

parental fitness shall take into account the 

use of adaptive equipment and supportive 

services for parents with disabilities and 

shall be conducted by, or with the assistance 

of, a person who has expertise concerning 

such equipment and services. Nothing in 

this section shall be construed to create any 

new or additional obligations on state or local 

governments to purchase or provide adaptive 

equipment or supportive services for parents 

with disabilities.... [N]othing in this chapter 

shall be construed to allow discrimination on 

the basis of disability. In any case where the 

disability of a parent is found by the court to 

be relevant to an award of custody of a child, 

the court shall make specific findings concerning the disability and what effect, if any, 

the court finds the disability has on the best 

interests of the child.”

While states such as California, Minnesota, 

and Idaho have moved in the right direction in 

protecting parents with disabilities in family court, 

many states have not. Capricious legislation 

coupled with the ambiguous best interest of the 

child standard leaves parents with disabilities open 

to discriminatory treatment and their children at 

a disadvantage. Until state laws are harmonized, 

with clearer allocation of evidentiary burdens and 

enforcement of nexus provisions, parents with 

disabilities will continue to face discriminatory 

treatment, and their children will suffer.

124 National Council on Disability
Issues in Meaningful Participation 

and the Total Lack of Guaranteed 

Representation 

Compounding an already arduous situation in the 

family law system, parents with disabilities face a 

complete lack of guaranteed legal representation 

and a plethora of barriers to meaningful 

participation. While parents have a right to 

representation in dependency cases in the 

majority of states, “there is no corps of family 

law specialists comparable to the public defender 

system that is educationally, administratively, 

and financially prepared to represent the rights 

of the indigent parent.”566 Indeed, obtaining 

appropriate and effective 

legal representation is 

often the first obstacle 

a parent with a disability 

faces in a child custody 

case. Whereas in 

dependency cases 

parents with disabilities 

generally have a right to 

counsel, no such right 

exists in custody and 

visitation matters—litigants must fund their own 

legal representation. Parents with disabilities 

often have limited incomes and more expenses 

than parents without disabilities.567 They are less 

likely to have the financial resources to retain 

private attorneys.568 Similarly, court costs and 

filing fees present significant barriers for parents 

with disabilities.569

Parents with disabilities often seek 

representation from legal service agencies 

and other advocacy organizations.570 However, 

Kirshbaum, Taube, and Baer found that “many 

parents with disabilities are surprised to 

discover that, throughout the United States, it is 

rare for disability legal advocacy organizations to 

become involved in marital custody cases.... 

P]arents with disabilities are often unable to 

obtain assistance from local, non-disabilityspecific legal service agencies [; these...] 

agencies are restricted in the types of cases 

for which they can provide representation.”571

Additionally, “Even where low-cost 

representation is offered by legal service 

agencies, it may be effectively unavailable. 

In many states, legal service agencies will 

represent only one spouse in dissolution or 

child custody dispute due to conflict of interest 

issues.”572 Moreover, legal service agencies have 

experienced significant funding cuts, further 

hampering their ability to 

represent parents with 

disabilities.573 In 2012, 

legal service agencies 

anticipate laying off 

nearly 400 employees; 

the reductions continue 

a staff downturn 

that began a few 

years ago.574 Limited 

financial resources also make it difficult—if not 

impossible—for many parents with disabilities 

to obtain expert witnesses, who are extremely 

important and often determinative in these 

cases.575

Even when parents can retain private 

legal representation, finding an attorney with 

disability-relevant experience and knowledge 

is challenging.576 Parents with disabilities 

face significant barriers within the family law 

system, largely because of bias and speculation; 

attorneys, like judges, are not immune to 

prejudice. Parents with disabilities must retain 

counsel that understands the barriers they 

Limited financial resources also 

make it difficult—if not impossible—

for many parents with disabilities 

to obtain expert witnesses, who 

are extremely important and often 

determinative in these cases

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 125
face and how to overcome them. Counsel 

must not only have expertise in family law but 

must understand disability or be willing to work 

with experts and advocates. Unfortunately, 

such legal representation does not exist in 

large numbers. 

Parents with disabilities are also likely to 

encounter difficulty retaining a private attorney 

who will adequately accommodate their 

disability. Title III of the ADA mandates private 

attorneys to provide clients with disabilities 

reasonable accommodations, such as interpreter 

services.577 Because private attorneys are 

generally required to absorb the costs of 

accommodations, they may decline this kind of 

case, although they will 

likely justify declining 

the case on other 

grounds.

Because obtaining 

affordable and effective 

representation is a 

significant barrier 

for many parents 

with disabilities, Kirshbaum, Taube, and Baer 

have found that those “who do not have legal 

representation often will simply not show up for a 

court appearance, unaware of the consequences 

of a failure to appear. They often think that their 

absence will merely postpone the issue, not 

that their legal rights may be lost, and [they] 

do not know that they can appear in court and 

ask the judge for a continuance while they find 

an attorney.”578 Such actions have enormous 

implications in these cases.

Parents with disabilities encounter a 

variety of other obstacles to meaningful 

participation in the family law system. Despite 

the mandates of the Rehabilitation Act and 

the ADA, physical access to courts is still a 

challenge in many communities, particularly in 

smaller towns and rural regions.579 Similarly, 

it is very common for parents with disabilities 

to face limited programmatic access, such as 

effective communication, during or regarding 

family court proceedings.580 Even when they 

request accommodations in advance, parents 

with intellectual disabilities often are not 

provided with advocates or translators so they 

can understand the family court process.581

Moreover, attorneys are often hesitant to request 

accommodations because they think calling 

attention to the parent’s disability might affect 

the custody outcome.582

Such barriers to physical 

and programmatic 

access greatly impede 

parents with disabilities 

from meaningful 

participation.

Thus, parents with 

disabilities all too 

frequently face significant barriers to retaining 

effective and affordable legal representation 

as well as meaningful participation in the 

family law system. At the same time, because 

of discrimination, their participation and 

involvement are crucial to securing a reasoned 

and nonbiased outcome in their child custody 

case. Professionals—including judges, attorneys, 

and evaluation personnel—need to be trained 

regularly on parents with disabilities and their 

children. This training should be a mandatory 

component of continuing education requirements 

for such professionals. Moreover, DOJ must 

issue guidance to family courts and attorneys, 

[A]ttorneys are often hesitant to 

request accommodations because 

they think calling attention to the 

parent’s disability might affect the 

custody outcome

126 National Council on Disability
reinforcing their legal obligations pursuant to 

the ADA. Such guidance must address (1) the 

applicability of the ADA to custody and visitation 

proceedings; (2) the courts’ duty to provide 

reasonable accommodations to parents with 

disabilities; and (3) the fact that presumptions of 

parental incompetence based on disability violate 

the ADA.

The Impact on Children

Children are at the center of all custody and 

visitation disputes, and are the most deeply 

affected by the outcomes of these cases. 

Children who are removed from their parents 

because of parental disability experience the 

same trauma from separation and loss of the 

primary caregiver that they face in dependency 

cases.583 Moreover, Callow, Buckland, and Jones 

believe that “these children also have a greatly 

increased risk for postremoval maltreatment. 

As a biased response to the parent’s disability, 

court officers, evaluators, and mediators are 

frequently in a rush to justify a move from the 

parent with a disability to a typical or ablebodied caregiver. This brings the courts to 

accept alternatives that would be unacceptable 

were the disability not a factor. Unlike Callow’s 

experiences with the general population in family 

court cases, [she] finds that children with a 

parent who has a disability are more frequently 

placed with the other (nondisabled parent) or 

an extended family member who has a history 

of abuse, addiction, poor decision making or 

parenting; has had little or no contact with the 

child; or will not be a ‘friendly parent’; that is, 

one who will facilitate an ongoing relationship 

between the child and the parent with a 

disability.”584

“For many, many children, the trauma of 

losing their families—one of the greatest 

traumas a child can endure—is heightened 

when they are abused or neglected...by 

co-parents or extended family members 

who have histories of violence, substance 

abuse, or neglect and would never have 

won custody from an able-bodied parent. 

Such suffering has repercussions not only 

for the children, but for society.”585

Conclusion

Each year the destiny of millions of children 

are decided in divorce, custody, and visitation 

proceedings throughout the United States.586

Custody and visitation disputes should be based 

on the best interest of the child; a parent’s 

status as disabled should be irrelevant to the 

analysis without an evidentiary showing of nexus 

between the parental disability and a detrimental 

impact on the child. 

Parents with disabilities are likely to 

encounter disparate treatment in the family law 

system entirely on the basis of other people’s 

perception of their disability and its impact on 

parenting. This discrimination is compounded 

by the patchwork quilt of state laws, attitudinal 

bias regarding the child-rearing abilities of 

parents with disabilities, and the effect of this 

bias on the already amorphous best interest 

of the child standard. Parents with disabilities 

have their child-rearing abilities evaluated with 

inappropriate and unadapted assessments 

as well as a lack of adaptive services and 

equipment. They often face significant barriers to 

retaining legal representation and participating 

in a meaningful way in the proceedings. These 

barriers are not just problematic in theory; 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 127
they have practical ramifications right now. 

A national study conducted by Margaret A. 

Nosek and colleagues revealed that women 

with disabilities are significantly more likely 

than those without disabilities to stay in 

a bad marriage out of fear of losing their 

children.587 Thus, the unnecessary obstacles 

and stereotypes plaguing the family law system 

for parents with disabilities have profound 

consequences for people with disabilities and 

their children.

128 National Council on Disability
Assessments to evaluate a parent’s ability 

to care for his or her child are often 

crucial to the outcomes of custody 

proceedings in child welfare and family court. 

These assessments are generally sought or 

court-ordered; they are conducted by mental 

health professionals, primarily psychologists, who 

then frequently function as expert witnesses 

in court. This chapter considers the quality, the 

appropriateness, and the role of bias in parenting 

assessments of parents with disabilities. 

The Role of Assessments in 

Determining Outcomes

Some scholars link an overly heavy reliance 

on expert testimony by mental health 

professionals in decisions in child custody 

matters to the vagueness of the best interest 

of the child standard.588 Guidelines from the 

American Psychological Association (APA) 

reflect controversy in the field regarding the 

appropriateness of such evaluators making 

“ultimate opinion” testimony recommendations 

about child custody or termination of parental 

rights determinations. The acknowledged 

influence of these evaluators on outcomes 

leads the APA to caution them against “relying 

on personal biases or unsupported beliefs.”589 

Psychologists who conduct child protection 

evaluations are urged to be aware that in TPR 

there is “a finality prompting both due process 

protections and higher standards of proof.”590 

The reliance on parenting assessments, 

conducted with questionable evaluation methods, 

has raised concerns about invalid and biased 

recommendations and decisions in general 

custody evaluation practice.591

Using a systematic examination of foster 

care court cases, Lenore M. McWey, Tammy 

L. Henderson, and Susan N. Tice found that 

family therapists are often asked to provide 

expertise even though they lack knowledge 

of current foster care policy.592 In all the cases 

examined, only two (6 percent) mentioned a 

therapist seeing the parent and child together 

before testifying about parental fitness.593 In 

one of those cases, a therapist did conduct a 

family assessment before testifying in court, 

but the therapist only saw the family together 

twice for a total of two hours. In the other case, 

the therapist saw the family once, completed a 

“parent–child interaction assessment,” conducted 

family play therapy, then testified about parental 

fitness. In the rest of the cases, therapists 

testified that although they had not seen the 

parent and the children together, they could make 

decisions about parental rights solely on the basis 

of the parent’s mental health status. In one case, 

a parent appealed the lower court’s decision 

explicitly because the therapist had never seen 

Chapter 8.  Inappropriate and Unadapted Parenti

Assessments in Child Welfare and 

Family Court

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 129
the family interact together before testifying that 

parental rights should be terminated. However, 

the court did not uphold the appeal and asserted 

that although the therapist “had never seen the 

children, or seen [the client] interact with them, 

the therapist had seen [the client]...and admitted 

that the parent did not qualify as an exceptional 

parent, not for lack of trying, but for the issues 

she was still struggling within herself to resolve 

in therapy.” In another instance, a therapist who 

worked with a mother at an inpatient facility 

testified that “based on her interview and 

testing of the mother . . . the mother lacked the 

emotional ability to parent effectively.” Again, 

parent-child assessments were not conducted.594

Bias in Assessment

APA guidelines for psychologists regarding child 

custody evaluations in family law, evaluations 

in child protection matters, and assessment 

and intervention with people with disabilities all 

emphasize the importance of culturally informed 

and nondiscriminatory practices.595 According 

to the APA, “Biases and an attendant lack of 

culturally competent insight are likely to interfere 

with data collection and interpretation and thus 

with the development of valid opinions and 

recommendations.”596

Recent APA guidelines for evaluations in 

child protection matters incorporate additional 

language highlighting potential bias concerning 

parental disability: 

“Unrecognized personal biases may compromise the ethical integrity and legal 

reliability of evaluation conclusions and recommendations. Such biases include those 

related to age, gender, gender identity, 

gender expression, race, ethnicity, national 

origin, religion, sexual orientation, disability, language, culture and socioeconomic 

status and immigration status.... Societal 

prejudices, just as perniciously, may lead 

to discriminatory, unfair use of evaluation 

methods and reasoning that disrespect examinee’s rights and dignity and undermine 

the scientific and professional bases of the 

child protection evaluation.... Psychologists 

also seek to remain aware of the stigma associated with disabilities often found in child 

protection cases, such as intellectual disabilities and psychiatric disabilities...and they 

ensure that they have sufficient professional 

competencies to provide an objective and 

accurate evaluation of persons with these 

disabilities.... In addition, psychologists 

seek to address aspects of the disability 

that are relevant to parenting, and remain 

mindful of the potential impact of stigma or 

bias in their own professional work and that 

of others involved in the case.”597

APA’s new guidelines for assessment and 

intervention with persons with disabilities 

emphasize that “particular care needs to 

be exercised by psychologists performing 

assessments in high-stakes, potentially 

contentious contexts,” including parenting.598 This 

exercise of care must include the management 

of potential bias. 

Unfortunately, as attorney Joshua B. Kay 

notes, mental health professionals conducting 

parenting assessments “may harbor their own 

stereotypes about people with disabilities. These 

stereotypes may reinforce those that judges 

and agency workers bring to the table, thereby 

replacing meaningful individualized inquiry with 

class-based declarations.”599

130 National Council on Disability
Bias can ripple through the system, beginning 

with the referral to the evaluator. Analysis of 

evaluations in the child welfare system suggests 

that in cases involving parents with disabilities, 

the referral questions that the courts ask 

the evaluator to address often reflect bias.600

Negative assumptions about outcome may 

be included in the referral and may affect the 

objectivity of the evaluation. Referral questions 

are often structured like this: 

“If Ms. X. suffers from 

a mental disability that 

renders her unable to 

care for and control the 

child adequately and if 

the disability renders 

her incapable of using 

reunification services, 

does the disability 

nevertheless make it 

unlikely that she will be capable of adequately 

caring for and controlling the child if reunification services were provided for six months?”

This question contains a problematic premise 

from the point of view of disability rights: It 

assumes that the disability status of the person 

being tested is in itself sufficient to determine 

whether the person can access services. In 

questions like these, no onus is put on services 

funded by the court to adapt to the needs of the 

parent with the disability.601

Testing of People with Disabilities in 

General

The Rehabilitation Act of 1973 requires 

“appropriate adjustment or modification 

of examinations” and “reasonable 

accommodations” to avoid discrimination against 

people with disabilities.602 Similarly, Title III of 

the ADA governs psychological practice and 

requires “reasonable accommodation and the 

inclusion of modified examinations as a form of 

accommodation.”603

For many years, evidence has indicated that 

testing people with diverse disabilities may 

require extensive specialized knowledge and 

skills; that a measure’s appropriateness for 

particular individuals with disabilities requires 

reviewing its validating 

efforts; that standardized 

instruments may lack 

appropriate norms 

or accommodations; 

that the meaning of 

test scores may be 

significantly altered 

in the presence 

of disability; and 

that erroneous and 

misleading results can be produced without 

attention to these issues.604 According to Rhoda 

Olkin, distinguished professor and director of 

the Institute on Disability and Health Psychology, 

Alliant International University, “Disability can 

affect testing in a variety of ways: if tests contain 

items that measure disability instead of the 

intended construct, if the process of taking a test 

is appreciably altered, and if the interpretations 

of results misapplies able-bodied norms to the 

client with a disability. A hallmark of testing is 

standardization, and the essence of disability is 

individualization.”605

Assessment of Parents with 

Disabilities in Both Systems

Although the Rehabilitation Act and the 

ADA require modification of examinations 

Although the Rehabilitation Act 

and the ADA require modification 

of examinations as a reasonable 

accommodation, parents with 

disabilities are often not afforded 

these protections when it comes to 

parenting assessments

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 131
as a reasonable accommodation, parents 

with disabilities are often not afforded these 

protections when it comes to parenting 

assessments. Instead, and to their detriment, 

parents are often evaluated using inappropriate 

and unadapted assessments.

Evaluators in child custody situations in child 

welfare and family courts typically use generic 

standardized tests as well as tests designed to 

assess parenting. Critics have questioned the 

validity and reliability of standardized assessment 

procedures applied to assessment of the 

capability and functioning of parents in general, 

as well as instruments 

specifically designed 

to assess general 

parenting.606

Concerns about 

appropriate test 

selection fall broadly 

into two categories: 

ecological validity 

of the tests and 

appropriateness of the normative samples 

for assessment of this population. Ecological 

validity is the question of whether or not the 

test measures a construct that relates to the 

ability in question; for example, whether a 

test of IQ or performance on the Rorschach 

accurately relates to parenting capacity. The 

question of an appropriate normative base 

relates to whether people in the population 

being tested were included in the population 

sample on which the test was normed. 

APA guidelines urge that psychologists use, 

whenever available, tests and norms based on 

populations similar to those being evaluated.607

People with disabilities have not been included 

in the sample populations on which many 

psychological tests and measures are normed.608

This increases the likelihood that their test 

performance will look deficient in comparison 

with that of the general population. It also 

makes it impossible to derive population-specific 

norms that would indicate an expected range 

of performance on a given test or measure for 

people with specific disabilities. 

In-process research on tests and measures 

being used in child welfare and family court 

evaluations of parents with diverse disabilities 

suggests that it is rare for people with disabilities 

to have been included in the normative bases 

of the tests and 

measures.609 This is 

particularly concerning 

because of the 

disproportionate role 

of testing in parenting 

evaluations of people 

with disabilities 

compared with 

observation of parentchild interaction.

Evaluators’ reliance on psychometric testing 

has included IQ tests and assumptions about 

what people with various IQ scores can and 

cannot do. This is particularly detrimental for 

parents with intellectual disabilities. According 

to researchers David McConnell and Gwynnyth 

Llewellyn, “These tests continue to be 

administered despite the research evidence 

demonstrating that parental IQ is a poor 

predictor of parenting competence. When normreferenced assessments are used, (sub)normal 

may be equated with (in)adequate so that the 

parenting practices and behaviors of parents with 

intellectual disability are judged subnormal and 

inadequate rather than simply different.”610

A number of studies have shown 

that the “parental-child relationship 

dictates parental fitness and not 

IQ levels.” Nonetheless, children

are often removed primarily on the 

basis of their parent’s IQ

132 National Council on Disability
In her Whittier Journal of Child and Family 

Advocacy article, Jennifer A. Culhane said, 

“Parenting ability is a complex set of variables 

that cannot be reduced to a simple intelligence 

test. It is imperative that evaluators asked 

to determine the parenting capabilities of an 

individual observe the parent and child together 

over extended periods of time.”611 A number 

of studies have shown that the “parentalchild relationship dictates parental fitness and 

not IQ levels.”612 Nonetheless, children are 

often removed primarily on the basis of their 

parent’s IQ.613

Sole reliance on the IQ, resulting in diagnosis 

of intellectual disability, leads to states having 

“bypass” statutes. For example, many removals 

occur simply on a categorical or diagnostic 

basis, without any individualized assessment 

or observation of parenting. Such categorical 

removals also occur when parents have 

psychiatric disabilities, although specialists 

urge individualized assessment and extensive 

observation of the parent-child relationship 

when assessing the capability of such parents.614

International researchers Alexander Tymchuk 

and Maurice Feldman warn, “Psychologists 

must avoid the trap of making assumptions of 

parental competency primarily on the basis of IQ 

scores.”615

In addition to problematic interpretation of IQ 

tests, Benjamin E. Fife examined the quality of 

psychological assessments received by parents 

with disabilities involved in TPR cases and found 

that projective tests tended to be overused 

on parents with intellectual disability.616 He 

points out that forensic psychologists have 

urged caution regarding the use of projective 

measures such as the Thematic Apperception 

Test and the Rorschach with people with 

cognitive disabilities.617 These tests generally 

are used to help assessors describe personality 

functioning and the relationship of personality 

traits to other aspects of psychological 

functioning. Responses that adults with 

intellectual disabilities make on projective 

tests run a high risk of being misinterpreted 

as showing other pathology and should be 

interpreted with caution.

In a study conducted by Breeden, Olkin, and 

Taube of 206 family court custody evaluators, 

Study of Family Court Custody 

Evaluators

In a study of 206 family court custody 

evaluators, although 68% had conducted at 

least one custody evaluation with a parent 

with a physical disability:

■ 67% reported they would not modify the 

process of testing or interpretation of 

results despite a physical disability of a 

parent being evaluated

■ 85%+ had no specific training regarding 

custody evaluation of parents with 

disabilities

■ 49% had no training in the psychology of 

disability, disability culture, or disability 

studies

■ 63% had no training in testing 

accommodations for people with physical 

disabilities

Christine Breeden, Rhoda Olkin, and Daniel Taube, 

“Child Custody Evaluations When One Divorcing Parent 

has a Physical Disability,” Rehabilitation Psychology 53(4) 

(2008): 445.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 133
two-thirds reported that despite the physical 

disability of a parent being evaluated, they would 

use the same tests, in the same way, and with 

no modifications to the process of testing or 

interpretation of results. More than 85 percent of 

the participants had absolutely no specific training 

regarding conducting custody evaluation with 

parents with such disabilities; 49 percent had no 

training in the psychology of disability, disability 

culture, or disability studies; and almost 63 percent 

had no training in testing accommodations for 

people with disabilities. Nevertheless, more than 

68 percent of the evaluators had conducted at least 

one custody evaluation 

with a parent with a 

physical disability.618

Few psychologists 

receive adequate 

specialized education 

or training regarding 

disability issues.619 “Few 

graduate psychology 

training programs offer 

disability coursework.620 This paucity of training 

is a major barrier to providing effective services 

to clients with disabilities.621 Limited training 

and experience may leave many psychologists 

unprepared to provide clients with disabilities 

with professionally and ethically sound services, 

including provision of assessments and 

interventions.”622

When evaluators have no disability training, the 

need for consultation with disability specialists is 

heightened. APA guidelines emphasize this point: 

“When an examinee possesses a cultural, racial, 

or other background with which psychologists are 

unfamiliar, psychologists prepare for and conduct 

the evaluation with the appropriate degree of 

informed peer consultation and focal literature 

review.”623

According to the APA’s guidelines for 

psychological evaluations in child protection 

matters, “Particular competencies and knowledge 

are necessary to perform psychological evaluations 

in child protection matters so that adequate and 

appropriate psychological services can be provided 

to the court, state agencies or other parties.... For 

example, in cases involving physical disability, such 

as hearing impairments, orthopedic handicaps, 

etc., psychologists strive to seek consultation from 

experts in these areas....”624

Despite the heightened need for input from 

disability specialists, in the aforementioned study 

of 206 child custody 

evaluators for family 

court, only 2 said they 

would seek consultation 

when evaluating parents 

with physical disability, 

even though most 

lacked relevant disability 

training.625

In producing such 

high-stakes, life-transforming reports for child 

welfare or family court, the APA urges that 

“psychologists strive to communicate any 

relevant limitations upon the use, findings, or 

interpretations of psychological assessment 

procedures, tools, and/or tests to persons who 

rely upon their reports or professional opinions/

recommendations for guidance or decisionmaking....”626

However, Fife’s analysis of child welfare 

evaluations regarding TPR of parents with diverse 

disabilities documents that a significant number 

of evaluations failed to note the limitations of the 

reliability or validity of their findings.627

Megan Kirshbaum, an internationally 

recognized expert, describes an evaluation she 

critiqued for court:

“Few graduate psychology 

training programs offer disability 

coursework. This paucity of training

is a major barrier to providing 

effective services to clients with 

disabilities.

134 National Council on Disability
“In one child welfare case the mother had 

significant cerebral palsy with speech involvement. The father, her partner and attendant, had a history of abuse and severe neglect of the mother. The psychologist evaluating the mother’s capability as a parent did 

not observe her with her baby as part of the 

evaluation; rather, he relied on interviews 

in his office. Since he couldn’t understand 

the speech of the mother he had the father 

always present to translate her responses. 

His evaluation did not cite this as a limitation regarding his conclusions.”628

In general, it appears that a lack of familiarity 

with disability issues and resources has resulted 

in evaluators underestimating both the limitations 

of their assessments and the importance of 

adaptations and input from disability specialists in 

supporting appropriate practice. 

Analysis of evaluations of parents with diverse 

disabilities for child welfare and family court systems 

has raised a number of issues that compromise 

quality, in addition to those previously cited:629

■ Informed consent or parental understanding 

of the evaluation and its meaning tend not 

to be documented, despite the heightened 

attention to informed consent required 

when a parent has an intellectual or 

psychiatric disability.630

■ The parent’s disability is often not identified 

with the accuracy or specificity required 

to determine appropriate adaptations in 

practice.631 For instance, a mother who was 

hard of hearing was incorrectly diagnosed 

as having a cognitive disability when 

tests were used that did not take into 

consideration that American Sign Language 

was her primary language.632

■ Inappropriate and stigma-laden language 

regarding disability, signaling lack of familiarity 

with disability culture (“afflicted with multiple 

sclerosis,” “wheelchair bound”), may be used 

in the evaluation report.633

■ When the parenting appears adequate 

at present, pathological speculations 

may be included regarding problems 

that might develop in the future. These 

speculations often reflect a lack of familiarity 

with disability adaptations and research 

regarding parents with disabilities and their 

children.634

■ Poor-quality evaluations are reported to be 

common, including substandard writing, 

use of boilerplate analyses by the same 

evaluator (even forgetting to change the 

name from a previous evaluation), and 

verbatim computer-generated interpretations 

of tests and measures.635

One problem in the evaluations for child 

welfare and family court is particularly critical. 

Many of these evaluations do follow the APA 

guidelines regarding multiple methods of 

data gathering, including clinical interviews, 

observations, and psychological assessments. 

However, observation, if it is included, is often 

minimal, done in clinical offices, or only during 

interviews. Studies of child custody evaluation 

practices with parents in general rank clinical 

observation of parent and child ahead of 

psychological testing.636

Bias and lack of familiarity with disability and 

relationships between parents with disabilities 

and their children increase the importance of 

observation of actual parent-child interaction. 

It is encouraging that custody evaluations have 

become more relational in recent years. There is 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 135
more recognition of the parent-child relationship 

as important to the functioning of both the parent 

and the child, and more measures are being used 

that seek to assess parent-child interaction and 

attachment.637

However, Fife’s analysis of evaluations for child 

welfare found that parent-child observation and 

home visits were underutilized as assessment 

tools in working with parents with disabilities. 

And when evaluators did observe parents and 

children together, they tended to describe parental 

disability in pathologizing terms, often interpreting 

as pathological aspects of the parent’s functioning 

with the child that were normal for disability 

culture and have been found in studies of parentchild interactions not to be detrimental to child 

development. For example, when a father with 

cerebral palsy (and no adaptations) needed to 

take longer to complete a structured play routine 

with his son compared with nondisabled foster 

parents, this was identified as evidence of reduced 

parenting capacity.638

Observation of parents with disabilities and 

their infants or children requires specialized 

knowledge about disability. Breeden, Olkin, 

and Taube note, “For example, in evaluation of 

the emotional attachment of the parent and 

child, some of the characteristics observed and 

considered as evidence of poor bonding include 

a parent’s rigid posture, awkward physical touch, 

stiffness, blank expression, failure to maintain 

eye contact with the child, and keeping physical 

distance.639 Each of these characteristics could 

be explained by various physical disabilities. 

For example, rigid posture, awkward physical 

touch, stiffness, and blank expression could all 

describe Parkinson’s disease. Failure to maintain 

eye contact is the norm for a parent with visual 

impairment, and keeping physical distance is selfpreservation when arthritic joints are painfully 

inflamed.”640

Recent APA guidelines emphasize that 

it is “essential to consider the interaction 

between the individual with a disability and 

his or her environment...the central role of 

contexts in assessing a person’s psychological 

functioning.”641

Observation in the home setting is crucial 

during evaluation of parents with disabilities, 

because the functioning of the parent and the 

parent-child dyad can be profoundly affected by 

being in an unfamiliar environment, without the 

adaptations and home modifications that are 

normally used. Analysis of evaluations of diverse 

parents with disabilities documents the rarity of 

home visiting.642 In the study mentioned earlier of 

206 family court evaluators, only 3 percent said 

they would do a home visit for a parent with a 

physical disability.643

An important trend that can enhance 

practice with parents with disabilities is a shift 

from describing clients as having or not having 

deficiencies toward using assessments to 

inform treatment and intervention strategies, 

discharge planning, and the development of 

a sense of what might help.644 However, this 

approach requires expertise with disability issues 

and solutions, including the natural adaptive 

process between parents and children and any 

adaptations that are used or introduced. All 

too often, current practice with parents with 

disabilities and their children is not informed by 

this expertise. 

Conclusion

Parents with disabilities who are involved 

in dependency or family law proceedings 

regularly face evidence regarding their parental 

136 National Council on Disability
fitness that is developed using inappropriate 

and unadapted parenting assessments. To 

address this issue, state statutes, rules of 

court, and professional standards must require 

evaluators to thoroughly investigate whether 

they are in compliance with the 2012 American 

Psychological Association Guidelines for 

Assessment of and Intervention With Persons 

With Disabilities, and whether they need to 

modify the evaluation process or incorporate 

parenting adaptations to provide a more valid, 

reliable assessment of a parent’s capacities in 

the context of child welfare and child custody 

cases. Such standards must require adapted 

naturalistic observations—for instance, in the 

parent’s modified home setting rather than 

an unfamiliar setting—instead of leaving the 

venue for observation open to the evaluator’s 

discretion. They must require explicit evidentiary 

support for statements about a parent’s capacity 

and prohibit the use of speculation and global 

diagnostic or disability labels as a ground for 

limiting custody or visitation. Professional 

standards must address the problem of using 

appropriate standardized testing to assess 

parenting capacity in parents with disabilities. 

Finally, state legislatures must mandate training 

for current custody evaluators in the skills 

necessary to conduct competent disabilityrelated custody evaluations. Such training must 

include valid methods that directly evaluate 

parenting knowledge and skills, and must 

consider the role of ecological factors that may 

impede or support positive outcomes.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 137
138 National Council on Disability
T

he previous chapter discussed the 

crucial need for disability expertise and 

observation of parent-child interaction 

in appropriate settings. This chapter focuses 

on some of the complex adaptation issues 

that affect overall involvement with child welfare 

and family court and assessment in these 

systems.

Adaptations and adapted services are integral 

to the lives of parents with diverse disabilities 

and to appropriate assessment and appropriate 

intervention in custody situations. The timelimited opportunity to document a parent’s 

potential and progress increases the need for 

specialized practice that is knowledgeable about 

adaptation issues. Disability accommodation 

and adaptation needs should be clarified from 

the outset of involvement with child welfare 

and family court systems, so that adaptation 

is appropriate throughout the process—in 

communication, settings for meetings, visitation 

and assessment, case plans, parenting 

evaluations, and services. 

Many parents with disabilities who are involved 

in custody disputes have not previously benefited 

from the adaptive resources and supports of 

disability and deaf cultures and specialized 

programs owing to a worsened or new disability, 

not identifying as having a disability, multiple 

disability, isolation, poverty, dependence on 

nondisabled partners or family members, or even 

abuse or domestic violence. Numerous issues 

may have to be addressed to level the playing 

field during involvement with child welfare or 

family courts.

Chapter 9.  Lack of Adapted Services, Adapt

Equipment, and Parenting Techniques in 

Child Welfare and Family Court

Amy Nichols, NCD Attorney Advisor, 

and her daughter, Shelby, enjoy leisure 

time in the pool.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 139
Communication Adaptation Issues

Communication must be adapted for some 

parents with disabilities. Communication access 

is often a barrier for parents who are deaf or hard 

of hearing. For instance, deaf parents may be 

reluctant to request a sign language interpreter, 

fearing that this will undermine their credibility 

and militate against gaining or retaining custody 

of their child. Some professionals may assume 

that the deaf parent can read lips, but most 

deaf people are not proficient at lip reading. 

It is estimated that even the best lip readers 

catch only 25 percent to 30 percent of what is 

spoken, and this percentage can be affected by 

context and environment as well as the extent of 

the person’s hearing loss and the age at which he 

or she became deaf.645 Many deaf people are 

not proficient at written English, and this too can 

undermine effective communication with those 

who do not use sign language.646

Parents who are blind and those who have 

intellectual or other cognitive disabilities (e.g., 

traumatic brain injury, stroke, or dementia) that 

limit their ability to read are often sent crucial 

printed material in custody situations, such 

as notices of required meetings or hearings. 

Parents with cognitive or intellectual disabilities 

often require “translators” to facilitate their 

comprehension of crucial processes, to ensure 

that their consent to assessment is informed, 

and to make their participation in court meaningful. 

To be effective, communication during 

reunification services must be individualized 

and adapted to the parent’s processing abilities. 

For instance, to absorb information, a parent 

with auditory processing disabilities might need 

a reduction of background noise and face-toface communication, without glare from a 

window behind the speaker. Many examples 

are available of adaptations for parents with 

intellectual disabilities from specialized programs 

with positive long-term outcomes.647 They 

include using multiple modalities to convey 

important information (e.g., talk, video, charts, 

photos, demonstration, and teamwork between 

parent and provider during practice of tasks or 

behaviors), and practicing during parent-child 

interaction in varied settings (home, community) 

to support integration and generalization of 

information. Neuropsychologists and cognitive 

rehabilitation specialists are other sources of 

cognitive adaptations. Their assessments can 

identify strengths and difficulties, thus reducing 

trial-and-error attempts to clarify the most 

effective modes of intervention.

At the outset of involvement with the child 

protection system, a parent with a head injury 

received an assessment from a speech and 

language therapist specializing in cognitive 

rehabilitation, which contained many practical 

communication suggestions to compensate for 

her significant auditory processing problems. 

These suggestions were ignored throughout 

the reunification services, undermining the 

effectiveness of the services. She was described 

as unable to benefit from services, and 

termination of her parental rights was sought.648

Adaptations and Assessments

Appropriate adaptations are integral to 

parenting assessment, not only in the choice 

of assessments and the manner of conducting 

formal assessments but also to level the playing 

field before and after assessments. It is crucial 

that evaluators cite the limitations of their 

assessments with regard to adaptive issues. 

Evaluators need to understand the adaptive 

resources used by parents with disabilities and 

140 National Council on Disability
the appropriate practice with such parents and 

their children to determine whether the parent 

could have been expected to benefit from 

services previously provided. Evaluators should 

review records and interview providers with 

this in mind, and their reports should reflect 

an assessment of the disability-appropriate 

incorporation of adaptations during previous 

practice. Any recommendations must be 

informed by disability and adaptation expertise.649

Expert witness analysis of child welfare and 

family court records of custody cases involving 

parents with disabilities has found a pattern of 

inappropriate disability practice; in particular, a 

lack of adaptations and failure to identify this 

problem in the parenting evaluations in the 

records.650 A study of 

child welfare evaluations 

found that evaluators 

were largely unable to 

identify appropriate or 

adapted interventions 

for supporting or 

strengthening the 

parenting capacities of people with disabilities.651

However, new APA guidelines regarding 

practice with people with disabilities reflect 

increased awareness of the role of adaptations 

and accommodations: 

“When conducting psychological assessments in clinical settings, it is essential 

to consider the interaction between the 

individual with a disability and his or her 

environment.... When the client uses assistive technology and accommodations, 

it is advisable to incorporate them into the 

behavioral observation to avoid capturing 

unaccommodated disability rather than the 

target behavior.652 ...This [functional] assessment focuses on social behavior, activities of daily living, family... communication, 

motor skills...and ensures disability accommodations in an assessment setting. For 

example, for restrictions to be functionally 

assessed, the home environment needs to 

be appropriately adapted.”653

Studies of adaptations for parents with 

physical disabilities document the effect of such 

equipment on parental functioning and infantparent interaction. These demonstration projects 

designed, provided, and evaluated the effect 

of baby care adaptations to ease obstacles at 

the outset of parenting.654 Adaptations included 

adapted cribs, baby care 

trays on wheelchairs, 

walkers with baby 

seats, wheelchairaccessible diapering 

tables and highchairs, 

lifting harnesses, and 

accessible childproofing. 

Pre-and post-videotaping analysis showed that 

such adaptations increased parents’ functional 

care abilities and involvement, decreased 

pain and fatigue, and enhanced infant-parent 

interaction. An overarching conclusion from these 

studies and subsequent clinical intervention 

and evaluation is that “one cannot assess the 

potential of a parent with a significant physical 

disability and an infant without first providing 

whatever adaptive techniques and equipment 

make it possible for interaction to occur and the 

infant-parent relationship to develop.”655

A parallel process that developed adaptations 

for parents with intellectual disabilities656

concluded that “one cannot discern the full 

Appropriate adaptations are integral 

to parenting assessment... to level 

the playing field before and after 

assessments

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 141
potential in parents with cognitive disabilities 

without providing adaptations that are 

individualized with the parent’s functioning.”657

Obstacles and adaptive solutions used by mothers 

with vision disabilities were also documented in 

research and in a resource guide compiled from 

parents’ suggestion.658 These adaptations have 

been found to be particularly useful for parents 

who are newly blind.

Lack of Adaptation Expertise Linked 

to Exaggeration of Needs

The lack of disability expertise and provision 

of adapted and appropriate services leads to 

assumptions that parents with disabilities cannot 

benefit from services or will require long-term, 

24-hour supervision. When such supervision 

is not available, unjust removals or custody 

arrangements may result. It is particularly 

common in child welfare custody cases involving 

parents with intellectual disabilities that 

generic services are offered that are claimed 

to be ineffective in producing improvements in 

parental functioning. It is then argued that the 

parent is unable to benefit from services, and 

TPR is sought. However, specialists on parents 

with intellectual disabilities have emphasized 

that appropriate adapted services can result 

in progress and positive outcomes.659 All too 

often, parents with intellectual disabilities have 

experienced inappropriate services—they are 

sent to standard parenting classes without 

home-based parent-child intervention or have 

numerous short-term, uncoordinated providers 

who lack expertise about their specialized 

needs.660

Child welfare and family courts might 

assume that 24-hour supervision or 

assistance will be required over the long 

term, even for parents whose physical 

disability (e.g., paraplegia) is quite 

manageable during parenting, without 

an understanding of the adaptations and 

modifications that support independence in the 

home. Twenty-four-hour supervision might also 

be assumed to be a long-term requirement for 

parents with psychiatric disability, based on 

diagnosis rather than individualized assessment 

and observation of parent-child interaction. 

Negative assumptions about prognosis might 

not take into account the effectiveness of infant 

mental health services or other community 

supports adapted to the needs of parents with 

psychiatric disabilities.661

Avoiding Bias Regarding Adaptive 

Supports 

Lack of familiarity with disability supports and 

adaptations can lead to bias in practice. Parents 

with physical disabilities in both family court 

and child welfare cases have been negatively 

evaluated regarding their capability because 

they use personal assistants to compensate 

for functional limitations.662 It would be more 

appropriate to assess how the parent maintains 

connection to the child and authority in the eyes 

of the child during assisted physical care.663

Similarly, parents with intellectual disabilities 

have received negative evaluations because 

they use independent living services or reside in 

supported living residences. 

Assessment Setting Issues

Parenting evaluations and observations are 

frequently conducted in psychologists’ offices, 

without adaptations to the settings.664 A parent 

who is blind is at a profound disadvantage in 

an unfamiliar environment as opposed to the 

142 National Council on Disability
home, where organization and adaptations can 

support parenting. Similarly, the functioning 

of parents with physical disabilities can 

be dramatically enhanced by their home 

modifications as well as by parenting and 

general disability adaptations. The absence of 

accustomed environmental adaptations creates 

a distorted picture of their parenting. The 

functioning of parents with intellectual or other 

cognitive disabilities also can be compromised 

in an unfamiliar setting owing to memory and 

organization issues. 

For example, in one custody case, distraction 

problems of a parent with an intellectual disability 

were intensified during an in-home observation 

that involved numerous 

professionals. In 

another observational 

assessment, a social 

worker was present who 

had been consistently 

negative about the 

potential of a mother 

with a psychiatric 

disability. Her presence 

was stressful and preoccupying for the mother; 

as a result, the mother’s usual sensitivity toward 

her baby was reduced during the session.665

Piloting Adaptations During 

Assessments

Knowledge of adaptive options is necessary 

so they can be introduced and their potential 

impact observed during assessment. Piloting 

adaptive strategies with a parent who has an 

intellectual disability can provide information 

about the parent’s processing issues and 

acceptance of intervention. For instance, child 

welfare involvement owing to an infant’s “failure 

to thrive” is not uncommon when parents have 

intellectual disabilities, owing to their problems 

with reading infant cues, understanding time, and 

measuring and mixing formula. Given the urgency 

of this situation, assessment would include 

adapted intervention to establish appropriate 

feeding while clarifying what led to the difficulty. 

Parents with intellectual or psychiatric 

disabilities often live in households with other 

adults who co-parent. It can be difficult to discern 

the potential functioning of the parent with the 

disability when the co-parent is present, as the 

natural adaptation in the family is to fill in the gaps, 

sometimes more than is necessary or helpful 

for the role of the disabled parent with the child. 

During assessment, a 

crucial strategy can be 

observing the parent with 

the disability and child 

without the presence of 

the co-parent. 

Providing baby care 

adaptations for a parent 

with a physical disability 

can produce rapid 

change in parental functioning and infant-parent 

interaction. Even piloting limited adaptations 

can be informative about potential. For example, 

in a child welfare case involving a mother with 

significant cerebral palsy, the psychologist 

conducting the evaluation speculated that the 

lack of mutual gaze between mother and baby 

was likely due to the intrapsychic pathology 

of the mother. However, no one had set up 

a physical situation in which the mother and 

baby were comfortably located face-to-face 

at an appropriate distance from one another 

to allow mutual gaze to develop. The disability 

specialist simply attached a laptop tray to the 

Parenting evaluations... are frequently 

conducted in psychologists’ offices, 

without adaptations to the settings

The absence of accustomed 

environmental adaptations creates a 

distorted picture of [one’s] parenting

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 143
mother’s motorized wheelchair and positioned 

the baby on a pillow on the tray (with pillow 

and baby secured by a wide Velcro strap); 

mutual gaze between mother and baby began 

immediately.666

Addressing disability obstacles can clarify 

underlying psychological or relational issues that 

can be targeted in services. For instance, after 

baby care adaptations made it feasible for a 

mother with a significant 

physical disability to 

provide care for her baby, 

the mother’s problem 

with understanding her 

baby’s experience was 

revealed and addressed 

in infant mental health 

services.667

Impact of Separation on the Natural 

Mutual Adaptation Process

Separation as a result of foster care or custody 

arrangements is recognized as a stress, 

particularly for infant-parent relationships. 

However, there are additional issues when a 

parent has a disability or deafness. Insufficient 

contact between the parent and infant can 

compromise their mutual adaptive process. 

Research videotaping care from birth through 

toddlerhood documented a natural mutual 

adaptation process between mothers with 

physical disabilities and their babies over time. 

Infants as young as one month began adapting to 

their mother’s disabilities; for example, by 

holding still and curling up like a kitten during 

lifts.668 In later clinical services, it was found 

that out-of-home placement interfered with 

the natural adaptation process. For instance, 

a baby developed an aversion to the sound of 

his mother’s motorized wheelchair after he was 

removed from the home, although it is typical 

for babies to enjoy and be drawn to the sound of 

their parents’ wheelchairs.669

Temporarily removing a child from his or her 

deaf parent(s) interrupts natural adaptations 

between parent and child, as well as effective 

communication within the family. Hearing 

children of deaf parents may be discouraged 

from or even denigrated 

for using sign 

language by people 

outside the home, 

including hearing 

neighbors and relatives. 

Prolonged lapses in 

developing bilingual 

skills can significantly 

undermine the child’s ability to effectively 

communicate with their deaf parent(s), which can 

have lifelong consequences.670

Adaptations During Reunification 

Services 

Because of the lack of expertise regarding 

disability and adaptations, reunification services 

provided by the child welfare system are 

often inappropriate and ineffective. A disability 

specialist describes working with a mother 

with very high quadriplegia (she could control 

movements only above her shoulders). The 

specialist was engaged by child welfare after 

the child was six months old. Up to this point, 

the mother had had no services that were 

knowledgeable about or appropriate to her 

disability, and she had no links to the disability 

community. She had been sent for urine testing 

to a site that would not deal with her catheter 

and had been expected to use buses to get 

Providing baby care adaptations for 

a parent with a physical disability 

can produce rapid change in 

parental functioning and infantparent interaction

144 National Council on Disability
there. She lived in a housing project where her 

motorized wheelchair had been stolen—when 

the disability specialist arrived, the woman was 

sitting on a sofa.671

Adaptations to Inform Visitation

Adaptations are often necessary to inform 

visitation decisions. For instance, a disability 

specialist’s input was sought by family court to 

clarify the appropriateness of visitation:

“In one case a nondisabled mother did 

not allow a preschool boy contact with his 

father during the father’s long hospitalization after spinal cord injury. The child had 

developed a fear of his father (associating 

him with monsters), so the mother argued 

that visitation was not in the child’s best 

interest. The father had extremely high-level 

quadriplegia and was receiving oxygen 

through a tracheal tube, so he could not 

speak with his child. A clinician specializing 

in disability introduced adaptations so the 

child and father could begin communicating 

nonverbally through play, first playing a computer game together, using switch-operated 

toys, and then painting pictures together 

(the father holding the brush in his mouth). 

The boy’s fear of his father’s disability equipment was addressed by allowing him to 

play in a motorized wheelchair. In a few sessions the child’s fears had subsided and he 

had begun to rediscover his father.”673

The Role of Interdisciplinary 

Expertise

Researchers have suggested that evaluators 

receive specific training on parenting with 

a disability and on the impact of disabilityappropriate interventions and parenting 

adaptations on the parent child relationship.674

Experts on disability and parenting have 

suggested a reexamination of the assumption 

Parents’ Stories: The Power of 

Adaptations

“A young African-American mother with 

quadriplegia had had her baby removed 

at birth after testing had shown prenatal 

substance abuse. The social worker 

described the mother as forming no 

relationship to her baby despite weekly 

visitation. She thought the mother was 

psychologically incapable of forming a 

relationship with her child. In the six months 

since the baby had been born the mother 

had been provided no assistance in order to 

make it possible for her to hold or care for 

her baby in any way. Everyone, including the 

mother, just assumed this was impossible. 

The able-bodied grandmother did the care or 

left the baby in a playpen during the visits. 

During the first visit I saw a depressed 

mother who indeed appeared estranged 

from and disinterested in her baby. But 

when I showed her videotapes of parents 

with disabilities and their babies—images of 

possibilities—she asked if I could help her 

hold and feed her baby. So in the second 

visit, with a variety of frontpacks and pillows, 

she was able to hold her baby for the first 

time. She tenderly nuzzled and murmured 

to her, caressing with her lips, greeting 

her baby for the first time as mothers do 

immediately after giving birth.”672

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 145
that psychologists provide the highest quality 

assessments in these cases and have suggested 

the possibility of broadening the field of parental 

assessment to involve more interdisciplinary 

practice.675

According to the APA, “Psychologists are 

encouraged to consider a multidisciplinary 

perspective in assessing clients with 

disabilities.”676 To address the limitations in the 

appropriateness of psychometric assessment 

tools for use with parents with disabilities—as 

well as the limited disability training, education, 

and experience among many evaluators—a 

multidisciplinary approach to assessment 

is encouraged. For example, a psychologist 

or neuropsychologist might work with an 

occupational therapist, speech and language 

therapist, or other disability and rehabilitation 

specialists. Assessments by occupational 

therapists have been found to be very helpful 

in custody situations involving questions 

about parental physical functioning and the 

potential of parenting adaptations. The Baby 

Care Assessment for Parents with Physical 

Limitations or Disabilities, an occupational 

therapy tool for evaluating baby care functioning, 

has been used both in child welfare and family 

court cases.677

Collaboration among practitioners from 

different disciplines can be especially important 

when parents have multiple disability issues. 

Specialists with varied disability expertise are 

needed to address adaptive obstacles and 

solutions for parents who have more than one 

category of disability; for example, blindness and 

physical disability or intellectual and psychiatric 

disability. 

Implications for Adoption and 

Assisted Reproductive Technologies

Many of the concerns about practice with 

parents with disabilities in the child welfare and 

family law systems should be considered in the 

context of adoption and assisted reproductive 

technologies, which are examined in Chapters 

10 and 11, respectively. Evaluation of the 

capability and health of parents with disabilities 

occurs in ART practice as well as in home 

studies in adoption. The disability expertise of 

practitioners making these determinations is 

questionable, as is their awareness of potential 

adaptive solutions. Occupational therapy 

evaluations using The Baby Care Assessment 

for Parents with Physical Limitations or 

Disabilities have been employed effectively in 

adoption. For instance, a woman with a physical 

disability experienced difficulty during the 

home study required for adoption. The social 

worker said she had serious reservations about 

the woman’s ability to parent, especially that 

she might drop a baby or be unable to catch a 

toddler who ran off. The woman—a leader in 

the independent living community—assumed 

that it would not be wise to express her dismay 

about the social worker’s speculations. Rather, 

she contacted a national center that provides 

technical assistance regarding custody issues of 

parents with disabilities. The center conducted 

a baby care adaptation assessment, using 

weighted dolls and adaptations that have proved 

helpful to other parents with disabilities. The 

mother provided the adoption agency with the 

assessment report, documenting capabilities 

and solutions to potential difficulties, as well as 

the center’s video and publication illustrating 

146 National Council on Disability
such adaptations in use by other parents. She 

successfully adopted a baby.678

Conclusion

Parents with disabilities who are involved in 

child welfare or family law proceedings regularly 

encounter a national dearth of resources to 

provide adapted services and adaptive parenting 

equipment, and to teach adapted parenting 

techniques. Even when such resources exist, 

dependency and family courts do not often 

use them. Adaptations and adapted services 

are integral to the lives of parents with diverse 

disabilities and to appropriate assessment and 

appropriate intervention in custody situations. 

Many parents with disabilities who are involved 

in custody disputes have not previously benefited 

from the adaptive resources and supports of 

disability and deaf cultures and specialized 

programs. They may have a new or worsened 

disability, may not identify as having a disability, 

may have multiple disabilities, may be poor or 

isolated, and may be dependent on nondisabled 

partners or family members. Abuse or domestic 

violence may also be factors in their failure to 

access resources and supports. Thus, a lot can 

be done during involvement with child welfare or 

family court to level the playing field. Many of the 

concerns about adapting practice with parents 

with disabilities in the child welfare and family law 

systems should also be considered in assisted 

reproductive technologies and adoption systems.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 147
148 National Council on Disability
Chapter 10. The Adoption Law Syst

Parents’ Stories: Rachel

In 1995, when Rachel 679 and her partner (both wheelchair users) decided to adopt, they had 

no idea they were embarking on a 15-year journey to become parents. They contacted the 

local child welfare agency to express interest in becoming foster or adoptive parents. They 

were immediately told that because of their disabilities they were not qualified. After they 

worked their way “up the chain” and threatened a lawsuit, the agency finally allowed them 

to apply. The couple met all the requirements and completed the necessary training. Soon 

after that, a brother and sister were placed with them. After only three months, the agency 

removed the foster children because their birth mother did not want them placed with a 

disabled couple. The agency offered another child, who proved to be an inappropriate match. 

Nearly five years later, with no communication from the agency, Rachel and her partner went 

through the training process again. Despite successful completion of training a second time, 

they never heard from the agency.

In 2004, after Rachel’s partner started a new job that paid well, the couple decided 

to apply for private adoption, hoping a private agency would better engage and assist 

prospective parents with disabilities. But the private adoption process was also riddled with 

discrimination. In 2006, the couple applied to adopt a young girl. After a home study and 

nearly two years of silence, they inquired again. Finally, in early 2009, Rachel and her partner 

were allowed to meet a child. In March 2009, the agency contacted the couple and told them 

that the girl’s foster parents were relinquishing her (which Rachel and her partner assumed 

was owing to her significant intellectual and psychiatric disabilities) and asked if they would 

like to become her foster parents. They agreed and she moved into their home in April 2009. 

In June 2010, 15 years after beginning their journey to become parents, Rachel and her 

partner adopted their daughter. Tragically, Rachel’s partner passed away five months later.

Adoption horror stories are all too 

common for prospective parents with 

disabilities. The adoption system is 

riddled with de facto and de jure discrimination 

that prevents countless prospective parents 

with disabilities from adopting. Examination of 

domestic and international adoption practices 

reveals that reforms are urgently needed across 

the broad spectrum of adoption practices and 

procedures.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 149
The Adoption Law System: A Brief 

Overview

Adoption law (both domestic and international) 

creates and governs the legal relationship of 

parent and child and bestows on the adoptive 

parents all the rights and responsibilities of 

that role.680 Once adoption is finalized, adoptive 

parents play the same role as biological parents 

in the life of their child.681 There is no inherent 

right to adopt a child or become a foster parent. 

Parenting by adoption is not guaranteed by 

the United States or any state constitution.682

Accordingly, many people with disabilities 

encounter discrimination when engaging in the 

adoption process. 

The goal of adoption 

is to “provide a 

permanent home that 

is suitable for the child 

and that is in his or 

her best interests.”683

The uncertainties 

posed by the best 

interest standard, 

well documented in 

legal commentary on issues involving rights 

and protection of minors, also contribute to 

bias in adoption cases. Reaffirming this issue, 

researchers from Northwestern University note:

“The vagueness of the ‘best interests 

of the child’ standard is compounded in 

practice by the administrative structure of 

adoptions agencies in the US. The vast majority of non-family adoptions in the US are 

arranged by private, independent agencies 

that usually operate on a commercial or 

for-profit basis. These independent agencies are generally lightly regulated and 

characterized by wide variability in terms of 

policies, practices, and procedures. Consequently, adoption remains a complicated 

construct within the legal system of the 

United States. In fact, there is no national 

legal framework governing the adoption 

process, with matters of law and policy 

determined separately by each of the 50 

states and the District of Columbia. A few 

umbrella pieces of legislation along with 

related judicial decisions bring a degree of 

national foundation for adoption in the legal 

realm, but statute law, policy, and practice 

in relation to adoption are largely determined at the state 

level.”684

During the adoption 

process, courts and 

agencies consider a list 

of criteria to determine 

whether an individual 

or couple will be 

suitable parents. Criteria 

typically include “age, religion, financial stability, 

emotional health, capacity for parenthood, 

physical health, marital status, infertility, 

adjustment to sterility, quality of the marital 

relationship, motives for adoption, attitudes 

toward non-marital parenthood, the attitude of 

significant others, total personality, emotional 

maturity, and feelings about children.”685 In 

deciding among prospective adoptive families, 

agencies may also consider where the couple 

lives and whether they have other children.686

For international adoption, each country defines 

its own criteria. 

Parenting by adoption is not 

guaranteed by the United States or 

any state constitution. Accordingly,

many people with disabilities 

encounter discrimination when 

engaging in the adoption process

150 National Council on Disability
Domestic Adoption

Domestic adoption is largely governed by state 

law, with federal laws providing overarching 

standards with which state adoption laws 

must comply.687 Massachusetts passed the 

first adoption statute in the United States.688

By 1929, all states had enacted similar laws, 

emphasizing the best interest of the child 

standard.

Domestic adoptions can be accomplished 

through many different routes, but each must 

be approved by a presiding judge.689 There are 

five types of domestic adoption in the United 

States: public agency adoptions, licensed private 

agency adoptions, independent adoptions (often 

referred to as attorney adoptions), adoption 

through a facilitator (allowed in some states), 

and unlicensed private agency adoptions.690

Public and licensed private agencies are required 

to meet state standards and operate under 

more oversight to ensure quality services.691

Unlicensed agencies and facilitators often 

are not subject to the same state oversight; 

consequently, there may be more financial, 

emotional, and legal risk for adoptive and birth 

families who use these services.692

Public agencies generally oversee the adoption 

of children in the state child welfare system.693

Children in foster care have been removed from 

their families for a variety of reasons, including 

abuse or neglect, and range in age from infants 

to teens.694 In public agency adoptions, matches 

are generally arranged by the agency—through a 

meeting of several social workers and supervisors 

or by a placement committee—and are based on 

the needs of the child and the ability of the family 

to meet those needs.695

In licensed private agency adoptions, the 

birth parents relinquish their parental rights to 

the agency and the adoptive parents then work 

with the agency to adopt.696 Many agencies allow 

birth parents to choose a prospective adoptive 

family for their child on the basis of profiles 

prospective families create to share information 

about themselves.697 “Prospective parents may 

have an opportunity to meet the birth parents 

face to face; however, social workers may 

make decisions about which families’ profiles 

are shared with expectant parents considering 

adoption, or agency staff may make the match 

of a child and prospective adoptive parent. In 

addition, agencies may give preference to certain 

types of individuals or couples (e.g., due to 

religious affiliation or marital status).”698

In independent adoptions, private attorneys 

assist prospective parents with the adoption 

process, which usually involves the adoption of 

an infant.699 Families that adopt independently 

identify the expectant parents without an 

agency’s assistance, and700 infants usually are 

placed with the adoptive parents directly from 

the hospital after birth.701 While state laws differ 

about the timing of the birth parents’ consent and 

the conditions and timing of the birth parents’ 

right to revoke that consent, there is always 

Types of U.S. Domestic Adoption

1. Public agency adoptions

2. Licensed private agency adoptions

3. Independent adoptions

4. Adoption through a facilitator (allowed in 

some states)

5. Unlicensed private agency adoptions

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 151
the possibility that birth parents will change 

their minds when the baby is born; because of 

the inherent parenting rights of the biological 

parents, their rights are stringently protected.702

The birth parents are the child’s legal parents 

until they consent to the surrender of their 

parental rights.703 Birth parents typically provide 

written consent for the adoption, which must be 

approved by the court.704 Independent adoptions 

are permitted in 46 states; Colorado, Connecticut, 

Delaware, and Massachusetts prohibit them.705

Adoptive placements by facilitators and 

unlicensed private agencies offer the least 

amount of supervision and oversight.706 A 

facilitator is a person who links prospective 

adoptive parents with expectant birth mothers for 

a fee.707 Facilitators may or may not be regulated 

in their state and may have varying degrees 

of expertise in adoption practice.708 Two states 

(Delaware and Kansas) strictly prohibit the use of 

facilitators.709

Adoptions often take place across state lines; 

these are regulated by federal legislation.710

Interstate adoptions are affected by two 

agreements between the sending and receiving 

states: the Interstate Compact on Adoption and 

Medical Assistance (ICAMA) and the Interstate 

Compact on the Placement of Children (ICPC). 

These agreements carry the force of law.711

Currently, 42 states participate in the ICAMA, 

which regulates and coordinates the payment 

of benefits to children with special needs, 

adopted pursuant to an adoption assistance 

agreement, when they are adopted from one 

state by a family in another state, or when 

the adoptive family moves from one state to 

Members of the Lucas family pose outside at the edge of a bridge.

152 National Council on Disability
another. The ICPC is an agreement among all 

50 states, the District of Columbia, and the U.S. 

Virgin Islands, and is covered by legal statute in 

all states. The compact applies to placements 

of minor children made from one state to 

another by public and private agencies, the 

courts, independent placers (i.e., physicians and 

attorneys), and individuals. 

There is a growing need for adoptive families; 

but although the number of children in foster 

care is on the rise, adoptions have dramatically 

decreased since the 1970s.712 Nearly 127,000 

children are adopted every year in the United 

States, but this is “a sharp drop since the 

century-long high point of 175,000 adoptions in 

1970.”713

International Adoption

International adoption (also referred to as 

intercountry adoption) differs from domestic 

adoption in several significant ways.714 Children 

who are eligible for intercountry adoption 

must have lost their birth parents to death 

or abandonment, or the birth parents must 

prove that they are incapable of caring for the 

children.715 In some cases, children adopted 

through intercountry adoption come from 

orphanages or institutional settings.716 The 

placement process for international adoption 

underwent significant change following 

the United States’ ratification of the Hague 

Convention on Protection of Children and 

Co-operation in Respect of Inter-Country 

Adoption on April 1, 2008.717 The convention 

is “designed to protect the best interests 

of children and prevent the abduction, sale, 

and trafficking of children.”718 In the United 

States, the Department of State has overall 

responsibility for implementing the Hague 

Convention, although the U.S. Citizenship and 

Immigration Services (USCIS) in the Department 

of Homeland Security also play a significant 

role.719 The United States is one of 85 nations 

that are parties to the Hague Convention.720

When a U.S. citizen wants to adopt a child from 

any of these nations, Hague Convention rules 

apply. In adopting a child from a country that is 

not a party to the Hague Convention, some rules 

vary.721

Disability Law and the Adoption 

System

The ADA and the Rehabilitation Act govern 

the adoption system, both domestic and to a 

lesser extent international. Title II of the ADA 

prohibits discrimination by public entities run or 

funded by state and local governments, such as 

public adoption agencies.722 Conversely, Title III 

of the ADA prohibits any public accommodation 

from discriminating against people with 

disabilities by denial of access to goods and 

services.723 Title III unquestionably governs 

access to private adoptions, as it includes 

“adoption agency” in the definition of public 

accommodations.724

One of the key ADA provisions is that adoption 

agencies may not use “standards or criteria or 

methods of discrimination that have the effect 

of discriminating on the basis of disability.”725

Of particular relevance for adoption agencies is 

the prohibition against “imposing or applying 

eligibility criteria that screen out or tend to screen 

out an individual with a disability or a class of 

individuals with disabilities from fully and equally 

enjoying” any services “unless the criteria can 

be shown to be necessary for the provision” 

of those services.726 (These exceptions are 

discussed below.)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 153
According to the Evan B. Donaldson Adoption 

Institute, adoption agencies often ask whether 

they may exclude a person with HIV infection 

because that person allegedly poses a direct 

threat to the health and safety of others.727 The 

ADA explicitly prohibits discrimination on the 

basis of HIV infection; adoption agencies may 

not categorically reject individuals as prospective 

adoptive parents on this basis.728

Additionally, the ADA requires adoption 

agencies to provide reasonable modifications in 

policies, practices, and procedures as needed 

for prospective adoptive parents with disabilities.

The agencies must 

provide auxiliary aids 

and services when they 

are necessary to ensure 

effective communication 

with prospective parents 

with disabilities. These 

mandates apply to the 

entire adoption process 

(e.g., application, home 

study, and interview).

Section 504 of the Rehabilitation Act governs 

adoption agencies that receive federal funding. In 

at least one reported case, Doe v. Nebraska,

729 a 

prospective adoptive parent with a disability who 

was discriminated against successfully sued for 

damages on the basis of the Rehabilitation Act. 

In this case, a couple was fostering two children 

in a foster care-to-adoption program. When the 

social services agency learned that the foster 

mother was HIV-positive, the agency immediately 

removed the children. A court ordered the agency 

to return the children based on its finding that 

returning them to the family was in their best 

interest. Subsequently, the agency found another 

placement for the younger child. The family filed 

a motion with the court, and the agency was 

found in violation of the court order. Eventually, 

the family won back custody of the younger 

child. Sadly, the mother died eight months later. 

The adoption was finalized the day before she 

died. Using the Rehabilitation Act, the estate 

of the mother and her adopted son sued the 

county for discriminating against the deceased 

foster mother. The state of Nebraska argued 

that it was immune from suit under the 11th 

Amendment. The court ruled that the couple had 

won the underlying discrimination claim on the 

merits, that Nebraska had waived its immunity 

from suit by accepting 

federal monies to run its 

program, and, therefore, 

the estate could sue 

under the Rehabilitation 

Act. 

While federal 

disability laws, such 

as the ADA and the 

Rehabilitation Act, do 

not govern other countries’ conduct, they do 

govern key aspects of international adoption. For 

instance, “The ADA applies fully to all adoption 

agencies doing business on U.S. soil so, by 

law, they must serve and accommodate the 

needs of adoptive parents with disabilities.”730

This means that private adoption agencies, 

even if they are engaging in international 

adoption, must comply with the access and 

nondiscrimination mandates of Title III. This is 

particularly relevant for home studies and the 

application process. 

The Rehabilitation Act requires federal 

agencies to provide programmatic access and 

reasonable accommodations as necessary. 

Accordingly, USCIS and other federal agencies 

[T]he ADA requires adoption 

agencies to provide reasonable 

modifications in policies, practices, 

and procedures as needed for 

prospective adoptive parents with 

disabilities

154 National Council on Disability
engaged in international adoption must comply 

with the Rehabilitation Act. This is especially 

significant for prospective adoptive parents with 

disabilities during the application and screening 

process.

Access to the Domestic Adoption 

System

Many people with disabilities seek to form 

families through domestic adoption. For some, 

the type of disability may make adoption the 

sole means by which parenting becomes 

possible. Unfortunately, access to domestic 

adoption is often impeded by discriminatory 

practices. Many 

prospective parents 

with disabilities are 

categorically denied 

the opportunity to 

adopt because of their 

disability, while others 

encounter bias and 

speculation concerning 

their parenting 

abilities. Because of 

the unspoken ranking 

system among domestic adoption agencies, 

prospective adoptive parents with disabilities 

are often completely precluded from adopting or 

are forced to wait for indefinite periods before 

a match is found. In light of the growing need 

for adoptive parents and “[i]n order to place 

as many children as possible, no one group of 

prospective parents should ever be categorically 

excluded.”731

Discrimination and Bias

Despite the ADA and Rehabilitation Act, 

prospective adoptive parents with disabilities 

regularly encounter barriers erected by 

discrimination and bias. According to Elizabeth 

Bartholet, Harvard Law School professor and 

one of the nation’s leading experts on adoption, 

“Discrimination is the name of the game in 

adoptive parenting. Those who procreate live in 

a world of near-absolute parenting rights. Those 

who would adopt have no rights. They must beg 

for the privilege of parenting and do so in a stateadministered realm that denies them both the 

right to privacy and the civil rights that we have 

come to think of as fundamental. Differential 

treatment on the basis of age, race, religion, and 

disability has been outlawed in almost all areas 

of our communal lives 

in the United States. 

Increasingly the law 

forbids discrimination 

on the basis of marital 

status and sexual 

orientation. It is only in 

the area of adoption that 

our system proclaims 

not simply the right 

to discriminate on 

all these bases but 

the importance of doing so. It is not just the 

prospective parents who are treated shabbily, 

but also the children, in whose best interests the 

system is supposedly designed.”732

Echoing Bartholet’s sentiments in his article 

“Empowerment for the Pursuit of Happiness: 

Parents with Disabilities and the Americans with 

Disabilities Act,” Dave Shade says, “The adoption 

process is complex, and because it frequently 

involves personal judgments by parents, 

social workers, judges, and other adoption 

professionals, it is fraught with the opportunity 

for discrimination.”733

The Rehabilitation Act requires 

federal agencies to provide 

programmatic access and 

reasonable accommodations as 

necessary. Accordingly, USCIS and

other federal agencies engaged in 

international adoption must comply 

with the Rehabilitation Act

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 155
Categorical Discrimination

The ADA prohibits adoption agencies from 

using “standards or criteria or methods 

of discrimination that have the effect of 

discriminating on the basis of disability.”734

Specifically, adoption agencies are forbidden 

from “imposing or applying eligibility criteria 

that screen out or tend to screen out an 

individual with a disability or a class of 

individuals with disabilities from fully and 

equally enjoying” any services, “unless the 

criteria can be shown to be necessary for the 

provision” of those services.735 The limited 

exceptions to this mandate are discussed later in 

this chapter.

Despite the ADA mandates, research 

demonstrates that a significant number of 

adoption agencies continue to categorically 

deny prospective parents with disabilities. 

In 2010, researchers from Northwestern 

University completed a study that examined the 

experiences of prospective adoptive parents 

who were cancer survivors.736 The study was 

aimed at the attitudes of the adoption agencies. 

Of the 27 agencies that were interviewed, 7 

admitted that certain medical conditions would 

prevent people from adopting through their 

agency. They cited a variety of illnesses and 

medical conditions that included “contractible 

diseases; AIDS; active, life-threatening diseases; 

use of antidepressants; terminal illnesses that 

shorten lifespan; conditions that require a large 

amount of narcotics that render the person 

unconscious; substance addiction; and severe 

mental conditions like schizophrenia.” Agencies 

were also asked whether they have a policy 

for dealing with prospective adoptive parents 

who are HIV-positive. Two agencies responded 

affirmatively; one said that HIV-positive persons 

would be disqualified, and the other cited the 

state law regarding the right of HIV-positive 

persons to adopt. Extensive research into state 

laws regarding the potential for an HIV-positive 

person to serve as an adoptive parent yielded 

no results.737 The researchers concluded, 

“Although existing legislative documents such 

as the Americans with Disabilities Act (ADA) 

protect cancer survivors’ rights to adopt a child, 

these protections are largely inconsequential in 

practice.... [The] network of adoption agencies 

working with potential parents in the U.S. is 

characterized by fundamental variability and 

ambiguity...[and] the current adoption system 

permits informal prejudice in practice that likely 

varies from one agency to the next.”738

Parents’ Stories: Christina

Prospective parents with disabilities 

continue to encounter categorical denials. 

When Christina,739 a woman with significant 

physical and sensory (vision and hearing) 

disabilities, applied to adopt her niece, 

she was astounded and appalled by her 

experience. The social worker at the public 

adoption agency told Christina that “a 

handicapped woman can’t take care of a 

handicapped child.” Christina’s battle to adopt 

her niece lasted for nearly a year. Eventually, 

she adopted her niece, after a courtappointed special advocate got involved and 

the state child welfare agency was almost 

held in contempt. Since this experience, 

Christina has adopted two more children and 

is in the process of adopting another.

156 National Council on Disability
Agency Discrimination and Home 

Studies

In addition to categorically denying prospective 

parents with disabilities, domestic adoptions 

frequently engage in other discriminatory 

practices. Bartholet says that prospective 

adoptive parents are subject to an unspoken 

“ranking system.” That is, the domestic adoption 

system ranks prospective parents in terms of 

relative desirability, “using factors that reflect 

the system’s bias in favor of a biologic parenting 

model, as well as a socially traditional family 

model.”740 Pursuant to this ranking system, 

“Heterosexual couples in their late 20s or early 

30s with apparently stable marriages are at the 

top of the ladder. These are the people who can, 

if they are not infertile, produce children, and who 

should in the system’s view be parents. Single 

applicants and those in their late 30s and 40s are 

placed lower on the ladder, along with people 

with mild disabilities. Gays, lesbians, and those 

who are significantly older or seriously disabled 

are generally excluded altogether.”741

Similarly, the children in need of adoption 

are also ranked in a list, which is based on the 

desirability of the adoptive child. Explained 

by Kimberly A. Collier in her Texas Wesleyan 

Law Review article, “This list places healthy 

newborns and infants at the top of the list as 

being most desirable. The children next on the 

list are somewhat older or less healthy than 

those at the top of the list. As the age of the 

children increases or the health issues become 

more problematic, the ranking of desirability 

continues to fall until one reaches the bottom 

of the list, where the oldest and most seriously 

disabled children are placed. Once the agency 

has composed these two lists, it works to match 

the children with the prospective parents. The 

parents with the highest ranking are given the 

most ‘buying power,’ with the most desirable 

parents being matched with the most desirable 

children. Less desirable parents are matched with 

the less desirable children, and so on down the 

list.”742 Given the proliferation of discriminatory 

agency standards, the most coveted adoptable 

children are least likely to be matched with 

applicants with disabilities.743

Case law, research, and anecdotal evidence 

demonstrate that disability often counts against 

prospective adoptive parents or negatively 

affects their adoption experience. In a national 

survey of 1,200 parents with disabilities, 

conducted for TLG by Linda Barker and 

Vida Maralami, 8 percent reported that they 

experienced attitudinal barriers that inhibited or 

prevented adoption.744

Most prospective adoptive parents with 

disabilities are mindful of the discriminatory 

practices that pervade the domestic adoption 

law system. According to a disabled couple that 

adopted, “At the start of our adoption process 

we were not concerned about whether we were 

capable and would make good parents, but 

were rather concerned about whether we would 

be viewed as capable parents by the adoption 

counselor at the agency as well as by the birth 

mother.”745

Although the potential for discrimination 

against people with disabilities exists during other 

stages of the adoption process—such as the 

placement decision and the judicial finalization—

the home study is often where people with 

disabilities face the greatest vulnerability.746

According to Shade, prospective adoptive parents 

with disabilities often face discrimination in one 

of two ways: “First, the evaluator may simply 

refuse to approve any adoptive placement, 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 157
judging the parents unsuitable to raise any child. 

Second, the evaluator may limit the approval of 

an adoptive placement to only those children 

deemed compatible with the disability of the 

adoptive parent. The stereotypes and societal 

attitudes concerning parents with disabilities 

are pervasive and powerful. Even evaluators 

trained to assess parental fitness are capable of 

falling victim to these prejudices. Social worker 

texts, for example, continue to propagate the 

paternalistic tendencies that conclude that 

disability is an important factor in assessing 

parental fitness.”747

Most domestic adoptions, whether private 

or public, include a rigorous preplacement 

evaluation of the adoptive home known as a 

“home study.”748 A home study is the principal 

instrument used to assess the fitness of 

prospective adoptive parents.749 Some states 

require that a state agency complete the home 

study, while others allow any licensed child 

placement agency to complete the study.750

Generally, the evaluator is a social worker, but 

the credentials and qualifications of home study 

workers vary greatly among jurisdictions.751

Further, “the home study process may also vary 

widely, even within the same locality, depending 

upon the attitude and diligence of the individual 

evaluator.”752 The content of a home study can 

also vary.753 “Most state statutes describe the 

required content in very general terms, if at all, 

leaving the form and content of the study to 

the evaluator.”754 Given the enormous latitude 

home study evaluators possess, Shade says, “It 

seems reasonable to conclude that the individual 

evaluator will have a tremendous amount of 

discretion when conducting a home study, 

perhaps making it easier for discrimination to be 

a part of the process.”755

Despite ADA protections, several nonlegal 

issues limit its usefulness.756 Shade says, 

“Situations in which the evaluating agency will 

also be making the placement decision put 

the adoptive parents in a terrible quandary: 

alienating the agency by initiating an ADA claim 

may jeopardize the placement process, a risk 

that many adoptive parents may be unwilling to 

take. Even where two different agencies will be 

making the home study and placement decisions, 

adoptive parents may fear that expressing 

dissatisfaction about the home study process 

or outcome could be communicated between 

the different agencies and might jeopardize the 

adoption. Finally, parents may be afraid to ‘cause 

trouble’ during the present adoption out of fear 

that any future adoptions might be jeopardized. 

These fears may hinder prospective adoptive 

parents from seeking legal relief, regardless of 

the strength of their legal claims and despite 

specific regulations explicitly designed to protect 

them from retaliation. Thus, rather than initiating 

an ADA claim, these parents may be more 

likely either to re-apply with another agency, or 

delay their adoption plans in the hopes that they 

can ‘rehabilitate’ themselves to the agency’s 

satisfaction.”757

In sum, the discretion and latitude 

bestowed on home study evaluators often 

results in prospective parents with disabilities 

encountering bias and discrimination. While the 

ADA unquestionably applies, prospective parents 

with disabilities often feel ambivalent about 

bringing it up.

Discrimination by Birth Parents

Birth parents can also play a role in 

discriminating among potential adoptive parents. 

In the majority of independent adoptions, birth 

158 National Council on Disability
parents “determine the ultimate suitability of 

adopters and, therefore, can openly disfavor 

against” parents with disabilities.758 In fact, 

the right of birth parents to place their child 

for adoption with whomever they choose, or 

to authorize another person to do so on their 

behalf has been embodied in the laws of all 

but three states (Connecticut, Delaware, and 

Massachusetts).759 For Ken760 (a man with 

hemophilia, hepatitis C, and HIV infection) and 

his wife (a wheelchair user), being chosen by 

birth parents was their biggest concern.

Sara C. Mills examined discrimination by 

birth parents in her 2011 

article “Perpetuating 

Ageism via Adoption 

Standards and Practices” 

in the Wisconsin Journal 

of Law, Gender and 

Society. According to 

Mills, “In independent 

adoptions and those 

involving private 

agencies, the opportunity 

for discrimination 

against prospective adoptive parents is far more 

common; this is because agency policies and 

the wishes of birth parents dictate the choice of 

applicants.”761

Permissible Discrimination or Valid 

Defenses to the ADA?

In general, adoption agencies may not deny 

prospective parents with disabilities the 

opportunity to adopt on the basis of the 

applicant’s disability, but there are exceptions. 

One factor that can be cited to justify the use of 

disability-related screening criteria is safety.762

Pursuant to the ADA, adoption agencies may 

impose legitimate safety requirements necessary 

for the safe operation of their services, programs, 

and activities. However, they must ensure that 

their safety requirements are based on actual 

risks, not on mere speculation, stereotypes, or 

generalizations about people with disabilities.763

Similarly, adoption agencies may use the 

justification of direct threat. Agencies are not 

required to permit a person to participate in 

or benefit from their services if that person 

poses a direct threat to the health or safety 

of others. However, in determining whether 

a person poses a direct threat to the health 

or safety of others, 

adoption agencies must 

make an individualized 

assessment based on 

reasonable judgment 

that relies on current 

medical knowledge or 

on the best available 

objective evidence to 

ascertain the nature, 

duration, and severity of 

the risk; the probability 

that the potential injury will actually occur; and 

whether reasonable modifications of policies, 

practices, or procedures or the provision of 

auxiliary aids or services will mitigate the risk.764

The Evan B. Donaldson Adoption Institute 

advises agencies, “When such individualized 

assessments are utilized, the result may 

well be an acceptance of an individual with a 

significant disability, such as, for example, a 

woman who has crippling degenerative arthritis 

but whose home has been thoroughly adapted 

to enable her to function and whose husband 

is actively involved in parenting and home 

management.”765

[T]he discretion and latitude 

bestowed on home study evaluators 

often results in prospective parents 

with disabilities encountering bias 

and discrimination. While the ADA

unquestionably applies, prospective 

parents with disabilities often feel 

ambivalent about bringing it up

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 159
The first court to address the applicability of 

the ADA to adoption and foster care agencies 

has weighed in, with a decision supporting 

the right of adoption and foster care agencies 

to take disability into account as a “legitimate 

consideration” in assessing a person’s fitness to 

become an adoptive or foster parent, provided 

that the agency does not routinely exclude 

disabled applicants from consideration by reason 

of their disability. In 1998, the U.S. District Court 

for the Western District of New York decided 

Adams v. Monroe County; it held that adoption 

agencies may consider a prospective parent’s 

disability as a “legitimate” consideration.766 In 

this case, a blind woman and her husband had 

qualified to participate in the foster to adoption 

program in their county, but no child was placed 

with them during their year with the program. 

The couple then proactively requested that a fouryear-old child they had learned of be placed with 

them. The agency responded that the child was 

very active and the wife’s disability precluded 

placement. In a lawsuit alleging violation of 

the ADA, the court ruled that three elements 

must be present to proceed with such a claim: 

(1) demonstrate that the plaintiffs were disabled 

in the meaning of the ADA; (2) prove that the 

prospective parents were otherwise qualified 

for placement of a child (had met all program 

requirements); and (3) illustrate that they had not 

received a child on the basis of discrimination. 

The court ultimately did not find in favor of the 

plaintiffs, ruling that discrimination had not been 

proved. The court found that the alleged safety 

issue related to this particular child, rather than 

a blanket denial of placement of any child in 

the home, precluded a finding of discriminatory 

conduct. The Adams precedent has potentially 

devastating power to prevent prospective 

parents with disabilities from adoption because 

of arbitrary “legitimate” considerations raised by 

adoption agencies.

Patchwork Quilt of State Laws

Despite the protections afforded by the 

Rehabilitation Act and the ADA, prospective 

adoptive parents with disabilities face increasing 

barriers to adopting domestically. To address the 

egregious practices of adoption agencies, some 

states have begun to add protections in their 

state statues.

For instance, Michigan amended its adoption 

laws in 1994 to prohibit adoption agencies from 

discriminating against potential adoptive parents 

on the grounds of age, race, religion, disability, 

or income level.767 As noted by Jehnna Irene 

Hanan, “The benefit of such a scheme is that it 

opens more potential adoptive homes for waiting 

children. By providing more placement options, 

the new law better safeguards the rights of 

children to a stable and permanent home.”768

Similarly, Wisconsin’s adoption statute states, 

“Although otherwise qualified, no person shall 

be denied the benefits of this section because 

the person is deaf, blind or has other physical 

handicaps.”769 Idaho’s adoption statute also 

bars discrimination on the basis of disability: 

“Adoptions shall not be denied solely on the 

basis of the disability of a prospective adoptive 

parent.”770 Idaho’s adoption statute further states 

that “the prospective adoptive parent shall 

have the right to provide evidence to the court 

regarding the manner in which the use of adaptive 

equipment or supportive services will enable 

the parent to carry out the responsibilities of 

parenting the child.”771

However, some states specifically deny 

prospective parents with disabilities the 

160 National Council on Disability
opportunity to adopt. As recently as December 

2011, Virginia erected an enormous impediment 

by approving regulations that allows adoption 

agencies to discriminate against prospective 

adoptive parents based on six categories, 

including disability.772 This regulation not only 

hurts many prospective adoptive parents, but 

is devastating for the more than 1,200 children 

currently waiting to be adopted in Virginia.773

Moreover, this regulation raises significant 

concern about whether other states will take 

similar discriminatory action.

North Dakota has a similar statute: “The 

department of human services may not deny a 

license because of the applicant’s objection to 

performing, assisting, counseling, recommending, 

facilitating, referring, or participating in a 

placement that violates the applicant’s written 

religious or moral convictions or policies.”774 Thus, 

the state may not refuse to license adoption 

agencies even if it knows that the agencies will 

discriminate against certain classes of people.

In light of the patchwork quilt of state adoption 

laws—especially Virginia’s recent enactment, 

which explicitly discriminates against prospective 

parents with disabilities—the need for action 

could not be more timely or clear. Federal 

protections of prospective adoptive parents with 

disabilities must be promulgated.

Ensuring Access to Domestic Adoption

In light of the vague and indeterminate state-bystate legal system of adoption and the variability 

in policies and procedures among adoption 

agencies, a multipronged approach is necessary 

to eradicate the discrimination that pervades the 

adoption system. 

The Federal Government, which has been nearly 

silent about the discrimination experienced by 

prospective adoptive parents with disabilities, must 

focus on ensuring the rights of these prospective 

parents. For example, the HHS Office for Civil 

Rights Web site contains extensive information on 

the legal rights and protection from race, color, and 

national origin discrimination for prospective foster 

and adoptive parents.775 However, despite similar 

civil rights protections, there is no analogous 

information for prospective foster or adoptive 

parents with disabilities.

DOJ has addressed the discriminatory 

practices of domestic adoption agencies in at 

least one case. In 2002, DOJ announced that it 

had reached a settlement agreement with Maple 

Star Nevada, a nonprofit agency in Las Vegas.776

Pursuant to the agreement, the agency will 

“allow deaf and hard-of-hearing applicants to be 

considered for selection as foster parents.”777

Moreover, the agency agreed to provide effective 

communication, specifically including sign 

language interpreters. Further, it agreed to adopt 

new policies to ensure compliance with Title III 

of the ADA, including a nondiscrimination policy. 

This settlement agreement resolved a complaint 

filed by a deaf woman who contacted Maple Star 

Nevada for information on applying to become 

a foster parent. “Maple Star allegedly refused 

to provide an interpreter during the required 

application process and certification. The deaf 

applicant was interested in providing foster care 

services for children with special needs and 

adolescents who cannot be maintained in large 

group care or foster care setting.”778

Accordingly, DOJ, in collaboration with HHS 

as appropriate, must issue guidance to domestic 

public and private adoption agencies, reinforcing 

their legal obligations pursuant to the ADA. 

Such guidance must address the agencies’ 

duty to provide reasonable accommodations to 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 161
prospective adoptive parents with disabilities 

throughout all phases of the process and the 

fact that presumptions of parental incompetence 

based on disability violate the ADA. Further, 

DOJ, and HHS as appropriate, must investigate 

all reported allegations of domestic public and 

private adoption agencies violating the ADA and 

enforce as appropriate.

Congress must also address the discrimination 

facing prospective adoptive parents with 

disabilities. Congress has made laudable progress 

in addressing discrimination against prospective 

parents of color. The Multiethnic Placement Act 

of 1994 (MEPA), as amended by Section 1808(c) 

of the Small Business Job Protection Act of 1996 

(also known as the Interethnic Adoption Provisions 

or Section 1808) prohibits the use of a child’s or 

prospective parent’s race, color, or national origin 

to deny or delay a child’s placement.779 The law 

also requires states to provide for the diligent 

recruitment of potential foster and adoptive 

families that reflect the ethnic and racial diversity 

of the children in care for whom homes are 

needed. Congress must pass similar legislation 

protecting the rights of prospective adoptive 

parents with disabilities.

Finally, state courts must ensure that adoption 

agencies comply with federal disability laws and 

do not discriminate against prospective parents 

with disabilities. In re Adoption of Richardson780

highlights the brutal bias lower courts have 

against prospective parents with disabilities. This 

case involved a deaf couple who had previously 

raised biological children and were denied the 

right to adopt on the basis of their disabilities. The 

lower court judge actually said, “Is this a normally 

happy home? There is no question about it, it is a 

happy home, but is it a normal home? I don’t think 

the court could make a finding that it is a normal 

home when these poor unfortunate people, they 

are handicapped, and what can they do in the way 

of bringing this child up to be the type of citizen 

we all want him to be?”781 The judge then wrote 

a letter to the county adoption bureau that said in 

part, “This adoption should be nipped in the bud 

before these unfortunate people get too attached 

to the child as, in my opinion, we are not doing 

right by the youngster in signing and approving 

an adoption to deaf-mutes.”782 This decision was 

reversed on appeal, but it illustrates biases that 

pervade the lower courts.

Unfortunately, few contested cases reach 

the courts and even fewer reach the appeals 

courts.783 According to Mills, one study found 

that only 0.1 percent of adoption cases nationally 

are litigated and even fewer involve contested 

adoptive parents (0.001 percent).784 It is unclear 

how many of these contested cases involve 

discrimination based on disability; probably very 

few. Richardson suggests that many prospective 

parents with disabilities may need to appeal their 

decisions because of the bias that exists in lower 

courts. Litigation, especially appeals, is very costly 

and likely not an option for many prospective 

parents with disabilities. State courts, especially 

lower courts, must appropriately apply federal 

disability laws to adoption cases.

Surely, “every child has the right to a loving, 

nurturing and permanent family, and ... people 

from a variety of life experiences offer strengths 

for these children.”785 And everyone, including 

prospective parents with disabilities, should have 

an equal opportunity to provide that family.

International Adoption: A Promising 

Alternative?

In consideration of the pervasive discrimination in 

the domestic adoption system, does international 

162 National Council on Disability
adoption provide prospective parents with 

disabilities greater opportunities? According to 

Erika Lynn Kleiman:

“One of the most common reasons for a person to turn to international adoption is that 

he has effectively been rendered ineligible as 

a prospective adoptive parent by domestic 

agency criteria.... Foreign countries often 

have less stringent requirements than American agencies. In addition, international home 

studies are often less rigorous than domestic 

ones. Admittedly, there are some countries 

with strict restrictions regarding which people may adopt their children. Nevertheless, 

the large number of countries that are willing 

to allow Americans to adopt their orphaned 

children increases most people’s chances of 

meeting the standards of eligibility for adoptive parents in at least one country. As such, 

international adoption provides an alternate 

source of children for Americans who may 

not qualify as eligible adoptive parents under 

domestic standards.”786

As this section reveals, prospective parents 

with disabilities encounter mixed results with 

international adoption. Some countries have 

less stringent requirements, and international 

home studies tend to be less rigorous. On the 

other hand, some countries categorically deny 

prospective parents with disabilities, and people 

with disabilities often face barriers to accessibility 

and travel.

Invidious Criteria

While international adoption may provide greater 

opportunities, nations differ in whether they 

permit people with disabilities to adopt. Some 

countries completely disqualify people with 

disabilities, while others apply more liberal 

criteria. Some nations are becoming increasingly 

restrictive in their eligibility requirements for 

prospective parents. Some of these countries 

have fewer children available, so they can 

become more selective about who can adopt.787

Restrictions are also likely a result of cultural 

differences in how disability is understood in 

other nations. The substantial gulf between 

understanding of disability in much of the United 

States and that demonstrated by other nations is 

often displayed when Americans with disabilities 

attempt to adopt from abroad. Ella Callow, 

director of the legal program at TLG, offers the 

following advice: “In choosing which type of 

international adoption to undertake, people with 

disabilities must be aware of the realities in 

other countries. The whole world is not America 

and most other nations have not focused as 

much attention on physical accommodation 

and education to increase societal inclusion. 

In light of this...[m]any other countries have 

policies that reflect strongly held beliefs about 

what constitutes disability, what disabilities will 

adversely affect the ability to parent and what 

type of children should go to homes where a 

parent is disabled.”788

For example, China recently modified its 

eligibility requirements, making it impossible for 

most people with disabilities to adopt from there. 

The Department of State says that to adopt a 

child from China:

“Both partners must be physically and 

mentally fit, with none of the following conditions: AIDS; mental disability; infectious 

disease that is actively contagious; blind 

in either eye; hearing loss in both ears or 

loss of language function (those adopting 

children with hearing or language function 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 163
loss are exempted from this requirement); 

nonfunction or dysfunction of limbs or trunk 

caused by impairment, incomplete limbs, 

paralysis, or deformation; severe facial 

deformation; severe diseases that require 

long-term treatment and that may affect life 

expectancy, including malignant tumors, 

lupus, nephrosis, epilepsy, etc.; major 

organ transplant within ten years; schizophrenia; severe mental disorders requiring 

medication for more than two years, including depression, mania, or anxiety neurosis; and Body Mass Index (BMI) of 40 or 

more.”789

Of the top five 

sending countries 

in 2011, three had 

eligibility criteria that 

completely or nearly 

precluded prospective 

parents with disabilities 

from adopting children 

from their countries.790 China, the top sending 

country, outright denies prospective parents with 

disabilities.791 Russia, which is number three, 

denies prospective parents with tuberculosis 

(active or chronic), illness of the internal organs 

or nervous system, dysfunction of the limbs, 

infectious diseases, drug or alcohol addictions, 

psychiatric disorders, or any disability that 

prevents the person from working.792 Ukraine, 

the fifth of the top sending countries, denies 

prospective parents with substance abuse, 

syphilis, and HIV infection or AIDS.793 In contrast, 

Bulgaria has the fewest requirements for adoptive 

families and will often accept parents with 

disabilities.794

Because of some countries’ stringent eligibility 

criteria, many prospective adoptive parents with 

disabilities do not pursue international adoption. 

For example, Ken and his wife795 (the adoptive 

parents mentioned earlier) made a “conscious 

decision not to explore international adoption 

because of countries’ rules.”

Agency Discrimination and Home 

Studies

Generally, the first step in the international 

adoption process is to choose an adoption 

agency. Each agency works with a different 

set of countries; some 

focus on a single 

country.796 Pursuant to 

the rules of the Hague 

Convention, the agency 

must be accredited by 

the U.S. government 

if the child’s country is 

also a participant in the 

convention. If the child’s 

country is not a participant, the Hague rules do 

not apply, and the process will follow the laws 

of the sending and receiving countries.797 Even 

when the Hague rules do not apply, a home study 

and USCIS approval are required. 

Linda A. Cronin, in Action Online: Magazine 

of the United Spinal Association, said, “The 

ADA applies fully to all adoption agencies doing 

business on U.S. soil so, by law, they must serve 

and accommodate the needs of adoptive parents 

with disabilities.”798 Thus, such adoption agencies, 

even though they are engaging in international 

adoption, must provide prospective parents with 

disabilities reasonable modifications, auxiliary 

aids, and services.

Of the top five sending countries 

in 2011, three had eligibility criteria 

that completely or nearly precluded 

prospective parents with disabilities 

from adopting children from their 

countries

164 National Council on Disability
But despite federal disability law protections, 

the same impediments found in domestic 

adoption exist in international adoption. These 

adoption agencies are not likely to be immune 

to the bias that pervades the domestic adoption 

system; in fact, they are often the same agencies 

that facilitate domestic adoption.

Other Barriers to International Adoption

In addition to stringent eligibility restrictions 

and agency discrimination, prospective adoptive 

parents with disabilities often encounter barriers 

related to accessibility, travel requirements, 

and cost.

As a federal agency, USCIS must comply 

with Section 504 of the Rehabilitation Act. The 

agency must provide reasonable modifications in 

policies, practices, and procedures as needed for 

prospective adoptive parents with disabilities, as 

well as auxiliary aids and services when they are 

necessary to ensure effective communication. 

Examples include a sign language interpreter for 

deaf prospective parents or application materials 

in alternative formats for blind or low-vision 

prospective parents.

Some prospective adoptive parents may 

encounter travel requirements that preclude or limit 

them from international adoption. Some countries 

require more than one trip, while others allow the 

children to be escorted to the United States by 

someone other than the parents.801 Some nations 

require longer trips than others. For instance, the 

Ukraine requires adoptive parents to stay for at least 

seven weeks.802 Travel can be difficult for some 

prospective parents with disabilities, who may 

need specialized equipment, personal assistance 

services, accessible hotels, and transportation. This 

can be cost-prohibitive for some, thus precluding 

them from international adoption. 

Despite significant obstacles, people with 

disabilities do successfully adopt internationally. 

The Chicago Tribune published the story of a blind 

couple who adopted two girls, one from India 

and the other from China (presumably before 

China changed its requirements).803 Both girls 

are also blind. The couple was reluctant to have 

children, until a pair of nuns collecting money 

for overseas orphanages told them about a blind 

orphan in Bangalore, India.804 After 18 months, 

they adopted their first daughter; a year later, 

they adopted their second.805

Parents’ Stories: Jessica and 

Rebecca

International adoption includes an extensive 

application and screening process conducted 

by USCIS. Jessica, a woman with osteogenesis 

imperfecta, and her husband, who adopted 

two children from Guatemala, said USCIS 

“wanted a very specific letter from [Jessica’s 

doctor] that indicated exactly what my medical 

history was, how my disability impacted my 

life and my prognosis for the future. They 

also wanted a letter from family members 

who would be able to step in and care for 

my child in an emergency.”799 USCIS also 

requires a background check, which includes 

fingerprinting, for all international adoptions. 

Rebecca,800 a mother with disabilities, noted 

that the fingerprinting requirement may 

preclude some people who do not have 

fingerprints because of their disability. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 165
Improving Access to International 

Adoption

As international adoption continues to expand 

and become a route to parenthood for many, the 

United States must ensure that all prospective 

parents have the opportunity to benefit, including 

prospective parents with disabilities. NCD 

recommends that CI, part of the Bureau of 

Consular Affairs at the Department of State, and 

the Department of State’s Office of the Special 

Advisor for International Disability Rights work 

together to expand the rights of people with 

disabilities to adopt internationally, particularly 

from nations that have ratified the Hague 

Convention. Such work will require educating 

state and private adoption agencies in other 

countries on the ability of people with disabilities 

to parent, with or without adaptive parenting 

equipment, techniques, or supportive services. 

Further, DOJ, in collaboration with HHS and the 

Department of State as appropriate, must ensure 

that international adoption agencies on U.S. 

soil are complying with federal disability laws. 

Similarly, USCIS must ensure that it is complying 

with its 504 mandates.

Conclusion

Around the world, countless children are waiting 

for their forever homes. At the same time, many 

people with disabilities want to provide a loving 

and nurturing home and family for children. 

Ignorance, stigma, and misconceptions are 

forestalling harmonious solutions. The result 

is devastating: Children spend many years 

in deplorable conditions in foster care and 

orphanages, while people with disabilities are 

robbed of the opportunity to welcome these 

children into their homes and hearts.

166 National Council on Disability
Kijuana’s experience is common. Many 

prospective parents with disabilities encounter 

significant, and sometimes insurmountable, 

barriers to receiving assisted reproductive 

technologies (ART). 

Access to ART is 

often impeded by 

discriminatory practices 

against people with 

disabilities, as well as 

the growing costs of 

treatment combined 

with limited coverage by health insurance. 

The fact that ART remains largely unavailable 

to many prospective parents with disabilities 

is significant because for many it provides the 

only opportunity to 

procreate. In fact, as 

this chapter explains, 

ART providers may 

have an affirmative duty 

to provide treatment, 

pursuant to the ADA, in 

some circumstances.

Chapter 11.  Assisted Reproductive Technolog

The fact that ART remains largely 

unavailable to many prospective 

parents with disabilities is significant 

because for many, it provides the 

only opportunity to procreate

Parents’ Stories: Kijuana Chambers

I

n 2000, Kijuana Chambers, a blind woman from Colorado, filed a lawsuit after being denied 

access to assisted reproductive technologies.806 According to the fertility clinic, Kijuana 

posed a “direct threat” to the safety of her yet-to-be-conceived baby.807 Just as Kijuana was 

about to undergo an insemination treatment, the clinic demanded that she get an occupational 

therapy assessment of her home to make sure it was safe for a baby.808 After looking into 

it, Kijuana informed the doctors that she could not obtain such an evaluation.809 The doctors 

refused to inseminate and refused all further services until she provided evaluations.810

After a lengthy battle, the 10th Circuit Court of Appeals denied the appeal in an unpublished 

decision.811 According to an attorney for the clinic, the doctors were worried that Kijuana 

could not care for a baby and turned her down because “it was the right thing to do.”812 “This 

case is about the moral and ethical responsibility of a physician,” the attorney said.813 Kijuana 

eventually located another clinic that provided her with fertility treatment, and she now has a 

daughter.814

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 167
Assisted Reproductive Technologies: 

A Brief Overview

ART—a mainly unregulated multibillion-dollar 

industry—is the only type of medical treatment 

in which the “end goal is the creation of 

another person.”815 ART includes a wide range 

of medical technologies designed to treat 

infertility or otherwise assist in impregnating a 

woman who is unable to become impregnated 

through sexual intercourse. Basic ART includes 

diet alterations, lifestyle changes, and drug or 

hormone therapy. Approximately 85 percent 

of infertility cases are resolved through these 

measures.816

More sophisticated and invasive interventions 

include intrauterine insemination (IUI) and in 

vitro fertilization (IVF). IUI is a relatively simple 

nonsurgical procedure in which prepared sperm 

from a partner or donor is brought closer to 

the ova through insertion into the woman’s 

uterus during her ovulatory phase.817 IVF is 

a more complicated process in which the 

ova are removed from the woman’s body by 

laparoscopy, fertilized with semen from her 

partner or donor, incubated in a laboratory dish 

until an embryo develops, and then transferred 

to the woman’s uterus.818 Some couples may 

also require gamete intrafallopian transfer or 

zygote intrafallopian transfer. All but the most 

basic ART requires treatment by a physician, 

typically a reproductive endocrinologist or 

urologist.819

IUI and IVF can also be used to impregnate 

a surrogate. A surrogate is a third party 

who gestates the baby to full term with the 

understanding that she will give the baby to 

the intended parents. In gestational surrogacy, 

the woman is inseminated with the intended 

couple’s fertilized egg (using either the couple’s 

gametes or donor gametes); thus, the surrogate 

is not genetically related to the baby. In partial 

surrogacy, the woman is inseminated with the 

intended father’s sperm (or donor sperm) for the 

purpose of fertilizing one of the surrogate’s own 

eggs; in this case, the surrogate is genetically 

related to the baby. 

According to estimates, nearly one in six 

American couples will experience infertility at 

some point, and nearly 14 percent of married 

couples who are not surgically sterile are 

infertile during any given year.820 More precisely, 

9 out of every 100 women worldwide between 

the ages of 20 and 44 cannot conceive a 

child.821 As Dave Shade notes, “Because 

disability has only a neutral or negative impact 

on fertility, people with disabilities who wish 

to have children are equally or more likely 

than the nondisabled population to experience 

infertility. Thus, it would be expected that 

at least fourteen percent of heterosexual 

couples trying to conceive, in which at least 

one partner has a disability, are infertile during 

any given year, and at least one sixth of such 

couples will experience infertility sometime 

during their relationship.”822 It is estimated that 

approximately 7.3 million couples in America 

currently experiencing infertility.823 One study 

estimates that this number will increase to 

approximately 7.7 million by 2025.824

Disability and Reproduction: 

Historical Context

As discussed in Chapter 1, the health care 

profession has a horrid history of curtailing the 

reproductive rights of people with disabilities. 

Jaime Anno, a master’s in public health 

candidate, wrote, “While scientific eugenics 

no longer occurs under that name, the 

168 National Council on Disability
determination and the practice of controlling the 

reproduction of some groups and supporting 

the reproduction of other groups persists in the 

United States.”825 In an article in the Berkeley 

Journal of Gender, Law, and Justice, Judith Daar 

wrote, “While the eugenicists of a century ago 

coerced the ‘feeble minded’ into surrendering 

their reproductive capacity through forced 

sterilizations, today’s practices act to deprive the 

disempowered of their capacity to reproduce by 

withholding the means necessary to produce a 

child.”826

The same beliefs about people with 

disabilities that once led 

health care providers 

to sterilize thousands 

of women with 

disabilities now lead 

them to provide or deny 

reproductive care on 

the basis of stereotypes 

concerning people with 

disabilities and their 

sexuality. According 

to Carrie Killoran, a 

mother with a disability, “Whether a woman 

is born with a disability or acquires it later in 

life, the message she gets from the medical 

system and society is that she is ineligible for 

normal societal female roles of lover, wife, or 

mother.”827

The misconceptions held by many health 

care professionals result in diminished access 

to reproductive health care for women with 

disabilities. As discussed in the NCD report The 

Current State of Health Care for People with 

Disabilities, women with disabilities require 

health services related to sexuality, reproductive 

care, and childbearing, just as women without 

disabilities do.828 However, social misperceptions 

and stereotypes about disability can make it 

difficult for women with disabilities to obtain 

information, medical care, and services to ensure 

that their reproductive needs are met.829 Such 

needs include routine gynecological and breast 

examinations; screening for sexually transmitted 

diseases (STDs); contraception; consultations 

about sexuality and sexual function; fertility 

consultation and support; obstetrical care during 

pregnancy, labor, and delivery; and information 

about healthy parenting and issues related to 

menopause, including osteoporosis, loss of 

libido, and insomnia.830

Structural barriers to 

receiving adequate and 

informed reproductive 

care include limited 

professional training and 

competency of primary 

care and reproductive 

care specialists; 

inadequate or no health 

insurance coverage for 

visits to specialists; 

poor physical access to usable and adapted 

or specialized examination and diagnostic 

equipment; and negative or discriminatory 

provider attitudes.831

ART providers are not immune to the eugenics 

philosophy that continues to pervade the health 

care system. Carl H. Coleman says, “Our society 

has a long history of efforts to prevent people 

with disabilities from having children, a history in 

which the medical profession played an especially 

prominent role. While we no longer embrace the 

coercive eugenics policies of the early twentieth 

century, the perception that some individuals 

with disabilities are inherently incapable of being 

“Whether a woman is born with 

a disability or acquires it later in 

life, the message she gets from 

the medical system and society 

is that she is ineligible for normal 

societal female roles of lover, wife, 

or mother.”

– Carrie Killoran

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 169
parents remains common in our society. Hence, 

there is a real danger that disability-related 

denials of ART will be based on ignorance or 

bias against people with disabilities, even more 

so than when physicians deny individuals with 

disabilities other types of medical care.”832

Disability Law and Assisted 

Reproductive Technologies

ART providers must comply with the ADA as 

well as the Rehabilitation Act if they receive any 

federal monies, such as Medicaid or Medicare. 

Generally, ART providers offer services in 

hospitals or freestanding medical offices. If 

the provider treats patients in a public entity, 

such as a state-run hospital, Title II of the ADA 

applies; otherwise, Title III of the ADA applies, 

because it includes “professional office of a 

health care provider, hospital, or other service 

establishment.”833

Title III prohibits any public accommodation 

from discriminating against people with 

disabilities by denying access to goods and 

services. Under Title III, ART providers may not 

(1) establish eligibility criteria that screen out 

people with disabilities from equally benefiting 

from a good or service; (2) fail to make 

reasonable modifications in policies, practices, 

or procedures when such modifications are 

necessary to ensure that people with disabilities 

have access to the goods or services; (3) fail to 

take such steps as may be necessary to ensure 

that no person with a disability is excluded, 

denied services, or treated differently because 

of the absence of auxiliary aids and services; 

(4) fail to remove architectural barriers; or (5) fail 

to make a good or service available through 

alternative methods if such methods are readily 

achievable.834

Access to Assisted Reproductive 

Technologies

In 1942, at the height of World War II, 

Supreme Court Justice William O. Douglas 

said, “Procreation...involves one of the basic 

civil rights of man ... fundamental to the very 

existence and survival of the race.”835 Although 

ART can enable many people with disabilities 

to procreate when they would otherwise be 

unable to do so, access is often impeded for 

prospective parents with disabilities because 

of significant, and sometimes insurmountable, 

barriers to receiving the vital treatment. 

Kimberly Mutcherson, professor of law at 

Rutgers University, said, “To be a reproductive 

endocrinologist is to wield tremendous 

power over procreation.”836 Prejudice and 

social tolerance of inappropriate and unlawful 

presumptions about disability often result in 

people with disabilities being denied access to 

ART, which in many cases violates Title II and 

III of the ADA. As the use of such treatments 

expands, providers must not lose sight of their 

legal and ethical obligations to treat people with 

disabilities. Moreover, the growing costs of ART, 

combined with the dearth of coverage for such 

treatment by health insurance, often prevents 

people with disabilities from using ART as a 

means to parenthood.

Discrimination and Bias

In recent years, ART has increasingly become 

the subject of impassioned widespread 

debate. Most of the public attention has been 

on the status of the children resulting from 

these treatments rather than the process by 

which patients are accepted for treatment, 

which has allowed widespread opportunity for 

discrimination. 

170 National Council on Disability
Physicians in private practice may decline 

to provide services to a person for a variety of 

reasons, such as excessive patient load, the 

person’s inability to pay, or simply because they 

do not like the person.837 For ART providers, 

it is also “legally and ethically permissible for 

a physician to refuse care to a patient when a 

medical assessment reveals that the patient 

cannot be helped with existing technology or 

that an ensuing pregnancy would seriously 

compromise the patient’s own health.”838

However, refusal to provide care on the basis 

of factors such as race, ethnicity, or disability 

violates both professional ethics and the law.839

Research demonstrates that ART providers 

regularly engage in discriminatory practices, 

particularly in screening potential patients. 

The Office of Technology Assessment of 

Congress surveyed 1,213 artificial insemination 

providers and found considerable potential for 

discrimination during the patient acceptance 

process.840 The survey revealed that one in 

five patients seeking artificial insemination is 

rejected.841 According to the survey, the most 

common rejection criteria were nonmedical: 

patient unmarried (52 percent of rejections), 

“psychologically immature” (22 percent), 

homosexual (15 percent), or “welfare 

dependent” (15 percent).842 When asked, 

“Have you ever rejected or would you be likely 

to reject a request for artificial insemination 

from a potential recipient because she was/

has...” respondents demonstrated an alarming 

willingness to make social judgments.843 “Sixtyone percent had rejected, or would be likely to 

reject, an unmarried woman without a partner; 

85 percent would reject a psychologically 

immature woman; 79 percent would reject 

a woman with a history of a serious genetic 

disorder; 95 percent would reject a woman with 

HIV infection; 32 percent would reject a woman 

with less than average intelligence; and 9 percent 

of infertility specialist physicians reported that 

they would reject a woman because she had 

less than a high school degree.”844 Moreover, 

the report revealed that more than half of the 

providers surveyed (52 percent) performed a 

“personality assessment” on their potential 

patients, 44 percent screened for genetic 

diseases, and 74 percent screened for “selected 

diseases.”845 In at least some instances, the 

purpose of these screening mechanisms was 

“to detect diagnosable mental illness or to 

address more general considerations of fitness 

for pregnancy and motherhood.”846 While this 

study addressed only artificial insemination, the 

surveyed physicians represent the same group of 

physicians that provides other ART, so the results 

are applicable.

Mutcherson cites another study on the 

screening practices of ART providers that 

demonstrates that “most fertility providers 

believe that their work obligates them to consider 

both the welfare of the fertility patient or patients 

and the welfare of a future child prior to agreeing 

to help a patient achieve pregnancy.”847 When 

asked questions about refusing hypothetical 

patients, providers demonstrated certain values 

and biases. According to this study, 59 percent 

of responding program directors said they would 

be very or extremely likely to refuse service to 

an HIV-positive woman, while 55 percent had 

the same response regarding a diabetic woman 

who had a 10 percent chance of dying as a 

result of her pregnancy. Sixty percent of the 

clinics would be not at all likely or slightly likely 

to turn away couples in which the woman has 

a history of attempted suicide, and 68 percent 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 171
answered similarly regarding a couple in 

which both members have limited intellectual 

ability. Finally, only 66 percent would work 

with a woman with bipolar disorder, whereas 

91 percent would work with a couple in which 

both members had become blind from a car 

accident.848

These studies demonstrate that ART providers 

regularly engage in discriminatory practices. 

Mutcherson says, “Given that those living with 

disabilities have frequently been singled out 

for ill treatment in the realm of procreation and 

parenting (including a long history of sterilization 

abuse), viewing fertility care through the lens 

of discrimination against the disabled provides 

a strong vantage point from which to evaluate 

what duties fertility providers owe to patients, 

and what duties society owes to those who 

face unjustified discrimination in their quest to 

become parents.”849

The Direct Threat Defense and the 

Future Child’s Interests

Although ART providers must comply with 

the ADA and may not discriminate on the 

basis of disability, Mutcherson, in her article 

“Disabling Dreams of Parenthood: The Fertility 

Industry, Anti-discrimination, and Parents with 

Disabilities,” examines whether ART providers 

may attempt to seek safe harbor under the direct 

threat defense of the ADA. The direct threat 

provision allows a physician to lawfully refuse 

care to a patient if the patient poses a direct 

threat to others.850

A direct threat is defined as “significant risk 

to the health or safety of others that cannot be 

eliminated by a modification of policies, practices, 

or procedures, or by the provision of auxiliary 

aids or services”851 Pursuant to the ADA and its 

corresponding regulations, the determination 

that a person poses a direct threat must be 

based on an individualized assessment, based 

on reasonable judgment that relies on current 

medical knowledge or on the best available 

objective evidence, to ascertain the nature, 

duration, and severity of the risk; the probability 

that the potential injury will actually occur; and 

whether reasonable modifications of policies, 

practices, or procedures will mitigate the risk.852

Mutcherson says, “Direct threat evaluations 

must be made to minimize the denial of services 

based on irrational fear and stereotypes, yet to 

allow care to be refused when objective evidence 

warrants that refusal.”853

Generally, in this context, threat-to-self claims 

should fail.854 For example, in the case of a 

woman who is HIV-positive, pregnancy presents 

unique challenges and has been found, in some 

circumstances, to compromise a woman’s 

health.855 However, other sources have found 

that pregnancy can actually improve the health of 

an HIV-positive woman.856 Moreover, Mutcherson 

says, “It is irrefutably the case that thousands 

of HIV-positive women have given birth—most 

of them to healthy children—since the start of 

the epidemic, and it cannot be conclusively 

shown that pregnancy severely compromises 

the life span of an HIV-positive woman. Even 

if pregnancy was detrimental, arguably the 

decision whether to risk a shortened life span 

in the interest of having biological children is 

a choice to be made by the woman seeking 

pregnancy, and not by a physician. Thus, 

while a fertility specialist could choose not to 

assist an HIV-positive woman for fear that her 

pregnancy would pose undue risk to her own 

health, the claim of direct threat to the patient 

is specious at best and subterfuge to conceal 

172 National Council on Disability
illegal discrimination at worst.”857 Similarly, 

in the case of a woman with quadriplegia, 

Mutcherson says, “The direct-threat-to-self 

claim also falters.... Such pregnancies entail 

risks, as do all pregnancies, but those risks 

can be well managed by obstetrical providers, 

thus negating a plausible claim of direct threat 

to self. The quadriplegic woman may require a 

more exacting level of monitoring than would a 

woman without such a disability, but the same 

is true for women who are diabetic, over the age 

of thirty-five, or have a history of miscarriages. 

Thus, the argument of direct threat to self is a 

poor one for fertility providers who are hoping to 

avoid caring for women with substantial physical 

disabilities.”858 ART providers will almost always 

fail in raising threat-to-self claims.

ART providers typically deny access under 

the guise of threat to others, where the defense 

applies in two ways. Direct risks (gestational 

concerns) are those that would result in 

transmitting the parent’s disability to the child, 

or the risk of an adverse pregnancy outcome 

directly linked to the pregnant woman’s disability, 

such as complications leading to fetal death or 

to a child’s disability. Indirect risks (child-rearing 

concerns) are those that could affect the child as 

a result of how the parental disability affects the 

ability to parent. 

Gestational concerns

ART providers regularly deny people with 

disabilities access to fertility treatment on the 

basis of gestational concerns. ART providers 

sometimes seek to employ the direct threat 

defense by asserting that the patient’s disability 

presents a risk to the child during gestation.859

Often, this “threat” is that the child may 

inherit a parent’s disability. In such cases, ART 

providers must be cognizant of the intent of the 

ADA, which clearly disallows stereotyping as a 

permissible factor for consideration. Mutcherson 

says, “The ADA requires reconsideration of 

outmoded perceptions that disability is a horrible 

fate inflicted upon a ‘victim.’ If the potential 

harm is already borne by one or both parents 

(e.g., infertile deaf parents with a significant 

risk of having a deaf child), the court would 

be well-advised to place great weight on the 

wishes of the parents having experience with 

the disability in question. Moreover, permitting 

ART providers any significant degree of 

control in selecting the allowable (desirable?) 

characteristics in a child raises troubling eugenics 

concerns and may call for the restriction of 

the discretion of providers when considering 

genetic risks.”860

Generally, gestational concern is outside the 

expertise of the ART provider,861 so the provider 

must seek a review from a qualified expert before 

escaping liability for a discriminatory denial of 

access to ART.862 While the ADA may not require 

a medical opinion in all direct threat cases, it does 

require an objective individualized assessment 

that relies on current medical knowledge or on 

the best available objective evidence.863 In most 

circumstances, an expert opinion would be 

necessary. 

Undoubtedly, ART providers who deny 

fertility treatment to prospective parents with 

disabilities because of gestational concerns do 

so because of their own beliefs about disability. 

In fact, Elizabeth Pendo, professor of law at 

Saint Louis University School of Law, Center 

for Health Law Studies, says that studies have 

consistently demonstrated that the attitudes of 

physicians and other health care professionals 

toward people with disabilities are as negative 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 173
as those of the general public, if not more 

negative.864 As one study found, “Health 

professionals significantly underestimate the 

quality of life of people with disabilities compared 

with the actual assessments made by people 

with disabilities themselves. In fact, the gap 

between health professionals and people with 

disabilities in evaluating life with disability is 

consistent and stunning.”865 For instance, Pendo 

notes, “In a survey study of attitudes of 153 

emergency care providers, only 18 percent of 

physicians, nurses, and technicians imagined 

they would be glad to be alive with a severe 

spinal cord injury. In contrast, 92 percent of a 

comparison group of 128 persons with high-level 

spinal cord injuries said they were glad to be 

alive.”866

Jennifer,867 a wheelchair user and mother 

of three children, was astonished when she 

experienced this attitude. During one of her 

pregnancies, genetic testing revealed that her 

child might have Down syndrome. Because of 

this, her physician encouraged her to terminate 

her pregnancy. Jennifer could not believe this; 

after all, she was a person with a disability, and 

she knew that having a disability was not the 

end of the world. Similarly, Susan,868 who has 

an immune system disorder and is a mother 

of two children, was upset when her physician 

encouraged her to terminate a pregnancy after 

genetic testing revealed a marker for Down 

syndrome. Like Jennifer, Sarah was hurt and 

saddened that her doctor believed that a child 

who might have a disability should be aborted. 

In the end, neither Jennifer nor Sarah terminated 

her pregnancy, and neither child was born with a 

disability, although if they had been, both women 

told NCD that they would have loved the children 

just as much.

Related to gestational concerns—and 

reflecting many ART providers’ negative beliefs 

about disability—is pre-implantation genetic 

diagnosis, which involves screening embryos 

created through IVF for the presence or absence 

of certain genes, such as deselecting for a 

disability or selecting for a particular sex.869

According to Adrienne Asch, Edward and Robin 

Milstein Professor of Bioethics at Yeshiva 

University and professor of epidemiology 

and population health and family and social 

medicine at Albert Einstein College of Medicine, 

“Using prenatal tests to prevent the births 

of babies with disabilities seems to be selfevidently good to many people. But for many 

people with disabilities, the message implicit 

in the practice of abortion based on genetic 

characteristics is, ‘It is better not to exist than 

to have a disability. Your birth was a mistake. 

Your family and the world would be better off 

without you alive.’”870 “Disability activists say 

underlying (mis)assumptions about disability 

influence women’s decisions about whether to 

abort. They believe families need more accurate 

information about various disabilities and the 

lives of people with disabilities. Activists also 

point out that discrimination has a huge impact 

on the lives of people with disabilities, and that 

many of the limits on quality of life come not 

from medical burdens, but from barriers set up 

by society, from stigmatization to elevators that 

don’t work.”871

According to a Web site on gynecologic 

and obstetric issues confronting women with 

disabilities, “Because most disabilities result 

from trauma or the effects of age, it is unlikely 

that prenatal screening will reduce the gross 

social cost of disabilities. [Thus], [p]renatal 

screening that fails to incorporate the subjective 

174 National Council on Disability
experience of the disabled themselves costs 

society enormously when it eliminates the 

contributions of gifted, diverse individuals.”872

Prenatal testing raises the question: Is it better 

not to exist or to have a disability? Most people 

living with disabilities would choose the latter; the 

same cannot be said for many ART providers.

Mutcherson says, “Women with disabilities 

have far too frequently faced discrimination in 

their quests to become parents. As reproductive 

technology creates 

expanded opportunities 

for these women, it 

would be a disservice 

to them—and the 

children...they would 

raise with love and 

care—to deny them 

the opportunity of 

biological parenthood 

routinely given to so many others.”873 Eugenic 

agendas that prescribe who is “fit” and “unfit” to 

reproduce or be reproduced must be challenged.

Child-rearing concerns

As Kijuana’s story at the beginning of this chapter 

illustrates, ART providers deny treatment to 

prospective parents with disabilities on the basis 

of their perceived inability to care for children. 

Most people are “free to reproduce with a 

consenting partner without a prior assessment 

of their child-rearing ability or competency.”874

However, many prospective parents with 

disabilities who seek ART have found that they 

are the unfortunate exception to the rule. As 

Carrie Killoran recounts:

“My infertility specialist never even considered the effects of my disability on childrearing. His interest seemed exclusively clinical. 

His nurse practitioner, however, with whom 

we had many appointments, seemed intent on repeatedly warning us of how hard 

it was to bring up a child, and how we did 

not know what we were getting into. This 

is a typical response for people who cannot imagine life with a disability. Everyone 

knows that having children is a lot of work, 

and to most people, choosing to add the 

difficulties of children 

to the challenges of 

disability is incomprehensible. However, 

we were at an infertility specialist! We 

clearly were not being 

whimsical or impulsive in our decision to 

have a child. I was the 

oldest in a family with lots of kids, and I had 

a good idea of what I was getting into.”875

As Mutcherson says, “Physicians who object 

to providing care based on amorphous concerns 

about the parenting skills of the patient and the 

best interests of the potential child stand on 

enormously shaky ethical and legal ground.”876

Generally, ART providers do not have the training 

or expertise to raise or assess child-rearing 

abilities.877 Shade says, “The fact that the medical 

community apparently considers such evaluations 

both appropriate and necessary evidences the 

extent to which such social judgments have 

previously been exercised by ART providers. 

However well-meaning such judgments may 

have been, they have undoubtedly been at times 

discriminatory in practice. Couples without 

infertility problems need satisfy no social criteria 

Prenatal testing raises the question: 

Is it better not to exist or to have a 

disability? Most people living with 

disabilities would choose the latter; 

the same cannot be said for many 

ART providers

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 175
to implement a decision to have children. To use 

infertility treatment as a proxy for a parental fitness 

evaluation is both inappropriate and ineffective.”878

Some people believe that it is morally 

wrong to knowingly conceive a child when 

there is a risk of transmitting HIV to the child 

and that the reduced life expectancy of the 

infected parent will disadvantage the child.879

However, researchers at the Royal Children’s 

Hospital/University of Melbourne argued that 

“denying HIV discordant couples access to 

assisted reproductive technologies is unjustified 

discrimination because couples who have 

children without reproductive assistance are not 

scrutinized in the same way.”880 The researchers 

said, “Couples who conceive naturally do not 

have to justify their desire to have children,”881

and “We have no reliable way of predicting who 

will or will not be a good parent and no agreed 

upon measure of what makes a good parent.”882

According to the American Society for 

Reproductive Medicine (ASRM), ART providers 

in the United States have traditionally not 

engaged in any “systemic screening of [a 

prospective patient’s] ability or competency in 

rearing children.”883 However, ASRM also asserts, 

“Fertility programs may withhold services 

from prospective patients on the basis of wellsubstantiated judgments that those patients 

will be unable to provide or have others provide 

adequate child-rearing for offspring.”884 The 

association also makes the following statement:

“With the growth of fertility programs and 

increased access for many people in the 

population, a wide variety of individuals now 

seek infertility treatment, including subcategories of patients for whom questions of 

child-rearing ability might legitimately arise. 

Many programs have had treatment requests 

from patients that raise such questions, for 

example, from persons who have a history 

of psychiatric illness, substance abuse, or 

ongoing physical or emotional abuse in relationships. Some patients or their partners 

may also have a history of perpetrating child 

or spousal abuse, or they present other factors that lead fertility programs to question 

whether they are likely to cause significant 

harm to a future child. In addition, persons 

with disabilities are increasingly seeking fertility services. While most disabilities do not 

impair child-rearing ability, there are some situations in which questions about child-rearing ability of persons with severe disabilities 

could reasonably arise.”885

Richard F. Storrow, professor of law at the 

City University of New York, says, “Although it is 

thought that most practitioners follow [ASRM’s 

ethical] guidelines, the guidelines themselves 

are in the nature of standards for self-regulation 

only. This lack of downward pressure on clinics 

from either the legal system or professional 

associations means that many clinics have no 

written policy on access to services.”886

Most ART providers believe that their work 

obligates them to consider both the welfare of 

the fertility patient or patients and the welfare 

of a future child before agreeing to help a 

woman get pregnant. In fact, one study cited 

by Mutcherson that screened 15 practices of 

ART programs found that although 59 percent 

of responding ART program directors believed 

that everyone has a right to have a child, 

64 percent of these directors also believed 

“in their responsibility to consider a parent’s 

fitness before helping them conceive.”887

176 National Council on Disability
Mutcherson said the fact “that only a minority 

(18 percent) of responding ART programs asked 

potential patients to meet with a social worker 

or psychologist during their patient screening 

process raises serious questions about how 

these programs accurately and adequately 

evaluate parental fitness without the aid of 

trained and skilled providers. This small number 

of evaluations conducted by social workers 

and psychologists starkly contrasts with the 

80 percent of programs in which potential 

patients meet with a financial coordinator.”888

Undoubtedly, as Mutcherson asserts, 

“Defining the contours of good parenting is a 

gargantuan task that is rivaled, if not surpassed, 

by the challenge of determining if any one 

individual actually possesses good parenting 

skills. This assessment is even harder when the 

individual in question has not yet had a chance 

to put those skills into practice. When a person 

stands on the verge of procreation, as does one 

who seeks fertility treatment, any assessment 

of future parenting skill risks being reductive 

and simplified, and may limit the number of 

individuals allowed to reproduce with medical 

assistance—without necessarily sparing any 

future child from harm.”889

Financial Barriers890

The cost of ART treatments significantly impedes 

many people with disabilities from accessing 

these technologies. (ASRM lists the average 

price of an IVF cycle in the U.S. as $12,400; the 

association does not say whether this includes 

medications.)892 Resolve: The National Infertility 

Association reports that the average cost of an 

IUI cycle is $865 and the average price of an 

IVF cycle using fresh embryos (not including 

medication) is $8,158.893 On average, medications 

for IVF are $3,000–$5,000 per fresh cycle.894

People with disabilities typically have lower 

incomes, face higher health care costs, and seek 

health care services more often than people 

without disabilities.895 Specifically, 30 percent 

of adults with disabilities aged 25 to retirement 

are living in poverty, which is twice the rate 

of their nondisabled counterparts.896 In 2008, 

26.1 percent of the poor population between 

Parents’ Stories: Stacey

Stacey 891 and her husband have been trying 

to conceive a child for more than a year. Both 

have physical disabilities. In preparation for 

conception, Stacey’s gynecologist conducted 

blood tests and an ultrasound, which revealed 

that her hormone levels and reproductive 

organs were “great for conceiving” and her 

uterus could carry a baby. 

Despite a year of trying, which has included 

ovulation kits and several other over-thecounter conception instruments, prenatal 

vitamins, exercise, and diet changes, Stacey 

and her husband have not conceived. Feeling 

“in the dark” about why they are unable 

to conceive, they would like to receive 

fertility treatment. Unfortunately, their health 

insurance (Medicaid and Medicare) does not 

pay for fertility treatment. Because of their 

limited incomes, they cannot afford the cost 

of treatment. Thus, because of significant 

financial barriers, Stacey and her husband 

may never be able to have a child and may 

never know why they could not conceive.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 177
the ages of 16 and 64 had a work disability. Of 

those with a severe work disability, 33.6 percent 

were poor, compared with 14.1 percent with a 

less severe work disability and 9.1 percent with 

no work disability.897 Under these conditions, the 

financial burden of ART is a significant barrier. 

Medicaid and Medicare, the primary health 

insurers for people with disabilities, do not cover 

fertility treatment services.

Congress created Medicaid in 1965 “to 

enable each State, as far as practicable, to 

furnish medical assistance to individuals whose 

income and resources are insufficient to meet 

the costs of necessary 

medical services.”898 

State Medicaid agencies 

may not “arbitrarily 

deny or reduce the 

amount, duration, or 

scope of a required 

service . . . to an otherwise eligible recipient 

solely on the [basis of] diagnosis, type of illness, 

or condition.”899 Medicaid is the nation’s largest 

group insurance program; it covers eight million 

people with disabilities.900 Half of all women with 

disabilities are covered by Medicaid.901 The lack 

of ART coverage under Medicaid and Medicare 

means that even if ART is accessible in theory, 

it is inaccessible to many people with disabilities 

in practice, because they cannot afford to pay for 

the services. 

Medicaid’s failure to provide coverage for ART 

is inconsistent with its willingness to provide 

coverage for the male erectile dysfunction 

medication Viagra. Although federal law allows 

states to refuse coverage for fertility drugs, 

in July 1998, HHS sent a letter to the nation’s 

governors ordering them to pay for the costs of 

Viagra under state Medicaid programs.902 The 

head of the Health Care Finance Administration 

reasoned that “Viagra had been approved by 

the FDA for the treatment of impotence and 

that impotence drugs were not allowed to be 

excluded from coverage pursuant to the statute 

because they were ‘medically necessary.’”903

State governors expressed concern that the 

mandate forced them to cover Viagra for men 

while covering virtually no birth control or fertility 

drugs for women.904

Although opponents may argue that Viagra 

treats general erectile dysfunction, the reality is 

that Viagra assists reproduction in cases in which 

a man cannot otherwise 

achieve an erection 

to release sperm. 

Medicaid’s mandate to 

cover a male fertility drug 

but not female fertility 

drugs discriminates 

against women with disabilities. The key role 

of Medicaid in providing health care services 

to women with disabilities necessitates that 

Medicaid and Medicare cover ART.905

Coverage of fertility treatment by private 

health insurance is minimal. According to a 

2006 survey of 931 employers conducted 

for Resolve, approximately 20 percent of 

employers cover ART.906 Fifteen states have 

passed laws requiring that insurance companies 

provide coverage for some level of infertility 

treatment—either that treatment be provided 

as a basic health plan benefit (mandate 

to cover) or that insurance companies at 

least offer infertility coverage to purchasers 

(mandate to offer).907 The 12 states that require 

insurance companies to cover infertility 

treatment are Arkansas, Connecticut, Hawaii, 

Illinois, Maryland, Massachusetts, Montana, 

Medicaid and Medicare, the primary 

health insurers for people with 

disabilities, do not cover fertility 

treatment services

178 National Council on Disability
New Jersey, New York, Ohio, Rhode Island, 

and West Virginia.908 California, Louisiana, and 

Texas mandate that insurance companies offer 

infertility coverage to policyholders.909 New 

Jersey should be applauded for its progressive 

approach to ensuring reproductive rights by 

including under its covered services IVF in 

which the embryo is transferred to a gestational 

carrier or surrogate.910

Although these state efforts are 

commendable, their 

impact is limited. 

First, coverage for 

treatment varies 

greatly, ranging from 

the initial consultation 

and diagnosis to IVF.911

Even a plan that covers 

IVF may cap the numbers of cycles or the dollar 

amount it will pay.912 Second, some insurance 

plans restrict coverage to certain individuals or 

relationships. For example, Maryland law requires 

coverage of in vitro fertilization but only if the 

“spouse’s sperm” is used.913 Finally, the federal 

Employee Retirement Income Security Act 

exempts self-insuring businesses (the majority 

of employers) from state insurance regulation.914

Therefore, even in the 12 states listed above, 

fertility coverage may be scarce. 

Coverage for ART is often opposed on cost 

grounds. However, IVF and other reproductive 

technologies account for only 0.03 percent 

of U.S. health care costs.915 Some studies 

show that the addition of ART treatment to 

a group health plan has a marginal effect on 

premiums.916 In fact, such insurance coverage 

might even be more cost-effective, because 

insurance premiums that indirectly provide 

coverage for “hidden” infertility benefits (e.g., 

surgery to remove scarring in a woman’s 

fallopian tubes or varicose veins removal for 

men) may be adequate to cover more effective 

and often less expensive treatments such as 

ovulation induction, IUI, and IVF.917

These projections are not merely theoretical. 

The cost of infertility services as a percentage of 

total health premiums went down after the 1987 

Massachusetts mandate.918 Another study found 

the additional cost to be an estimated $1.71 per 

month.919 In addition, Mercer’s 2006 National 

Survey of EmployerSponsored Health Plans 

found that 91 percent 

of employers reported 

no measurable increase 

in their health plan cost 

after including infertility 

coverage.920 Responses 

did not vary significantly between employers 

that did and did not cover IVF.921

Ensuring Access to Assisted 

Reproductive Technologies

In “Accessing Reproductive Technologies: 

Invisible Barriers, Inedible Harms,” Judith F. Daar 

writes, “Only by insisting on access for all can 

we realize Justice Douglas’ view of procreation 

as a basic human right.”922 She concludes that 

“stigmatizing would-be parents by depriving 

them the opportunity to reproduce is dangerously 

reminiscent of our eugenics past, an era in which 

misguided judgments about parental fitness 

culminated in the involuntary sterilization of 

thousands of Americans.”923

Significant attention must go to ensuring 

access to ART for prospective parents with 

disabilities. Specifically, DOJ should issue 

guidance to ART providers, reinforcing their legal 

obligations pursuant to the ADA and addressing 

their duty to provide access and reasonable 

Medicaid’s mandate to cover a male 

fertility drug but not female fertility 

drugs discriminates against women 

with disabilities

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 179
accommodations throughout all phases of the 

process and reminding them that presumptions 

of parental ability based on disability violate the 

ADA. DOJ must also investigate all reported 

allegations of ART providers violating the ADA and 

enforce the law as appropriate. HHS—collectively, 

the Office on Disability, CDC, NIH, and Office 

of the Surgeon General—should issue guidance 

to ART providers on treating patients with 

disabilities and their legal obligations to provide 

access and reasonable accommodations. ART 

professional organizations, such as the SART 

and the ASRM, must issue guidance to ART 

providers on treating patients with disabilities 

and their legal obligations to provide access and 

reasonable accommodations. Finally, CMS must 

identify and implement mechanisms to pay for 

ART for Medicaid and Medicare beneficiaries with 

disabilities.

Assisted Reproductive Technologies 

as an Accommodation

ART enables certain people to procreate in 

cases in which reproduction would otherwise 

be difficult or impossible. Providing these 

technologies to people with disabilities is a 

method for breaking down a socially created 

barrier to procreation. Interestingly, ART may 

be more desirable than adoption to some 

prospective parents with disabilities, because 

the process of adoption is riddled with 

stigmatization, demeaning investigations, and 

reluctance.924 In fact, women with disabilities 

may be more interested in ART than are their 

nondisabled counterparts.925 This section 

examines the affirmative duty of ART providers 

to treat prospective parents with disabilities, 

in some situations, under the auspices of 

ADA-mandated reasonable accommodations. 

It explores the obligations of countries that 

have ratified the Convention on the Rights of 

Persons with Disabilities and the application 

of its “effective and appropriate measures” 

provision to ART.

ADA Duty to Provide Reasonable 

Accommodations926

Accessibility to good reproductive health care and 

services means more than ramps.927 Provision 

of assisted reproductive technology is similar 

to other ADA-mandated accommodations 

in the context of reproductive rights. In his 

article “Same Struggle, Different Difference: 

ADA Accommodations as Antidiscrimination,” 

Michael Stein, an internationally recognized 

Bias Among Artificial Insemination 

Providers

The Office of Technology Assessment of 

Congress surveyed more than 1,200 artificial 

insemination (AI) providers and found the 

following percentages of providers had 

rejected or would be likely to reject a request 

for AI because she was / has:

■ An unmarried woman without a 

partner 61%

■ A woman with a history of serious 

genetic disorder 79%

■ A woman with HIV infection 95%

■ A woman with less than average 

intelligence 32%

■ A woman with less than a high 

school degree 9%

180 National Council on Disability
disabilities rights expert, explains that ADAmandated accommodations are consistent 

with other antidiscrimination measures 

in that each accommodation remedies 

the exclusion of a class of people from an 

opportunity by questioning the inherency of 

established norms. He argues that disabilityrelated accommodations must operate as 

antidiscrimination provisions to alter social 

attitudes toward the disabled. Most important, 

society must recognize that these measures 

are not just accommodations, they are a right. 

Surrogacy is a method 

for eliminating socially 

created barriers to 

reproduction for persons 

with disabilities. Barrierfree access to surrogacy 

should be available as 

a matter of right, not 

a privilege or special 

accommodation.928

Many advocates have looked to the ADA to 

secure meaningful access to health care for 

people with disabilities. The purpose of Title 

III is to ensure that no person with a disability 

is denied goods or services offered to the 

public, including health care providers such 

as ART providers, because of a disability.929

Pursuant to Title III, discrimination includes 

failure to make reasonable modifications in 

policies, practices, or procedures when such 

modifications are necessary to ensure that 

people with disabilities have access to the 

goods or services.930 Health care providers must 

take affirmative steps to ensure accessibility 

for people with disabilities. For ART providers, 

this may include the use of ART as a reasonable 

accommodation. 

United Nations Convention on the 

Rights of Persons with Disabilities931

Articles 23 and 25 of the CRPD have several 

positive implications for people with disabilities 

seeking ART. 

Article 23, Respect for home and the family, 

obligates States Parties to take effective and 

appropriate measures to eliminate discrimination 

against people with disabilities in all matters 

relating to marriage, family, parenthood and 

relationships, on an equal basis with others.932

Three rights must be 

advanced to eliminate 

discrimination: (1) the 

right of all people with 

disabilities who are of 

marriageable age to 

marry and to found a 

family; (2) the right of 

people with disabilities 

to decide freely and 

responsibly on the 

number and spacing of their children and to 

have access to age-appropriate information, 

reproductive and family planning education, 

and the means necessary to enable them to 

exercise these rights; and (3) the right of people 

with disabilities, including children, to retain 

their fertility on an equal basis with others.933

Article 23 also provides that States Parties shall 

ensure the rights and responsibilities of people 

with disabilities with regard to guardianship, 

wardship, trusteeship, adoption of children, and 

similar institutions, where these concepts exist 

in national legislation.934 Third, States Parties shall 

render appropriate assistance to people with 

disabilities in the performance of their childrearing responsibilities.935 The terms “effective 

and appropriate measures” and “means 

Accessibility to good reproductive 

health care and services means 

more than ramps. Provision of

assisted reproductive technology 

is similar to other ADA-mandated 

accommodations in the context of 

reproductive rights

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 181
necessary” create a positive duty on the part 

of States Parties to provide accommodations 

to people with disabilities in the realm of 

reproductive choice. 

Article 25 of the CRPD protects the right 

to the enjoyment of the highest attainable 

standard of health without discrimination 

on the basis of disability. Specifically, States 

Parties shall provide people with disabilities 

with the same range, quality, and standard of 

free or affordable health care and programs 

as provided to other people, including in the 

area of sexual and reproductive health and 

population-based public health programs. This 

provision also requires health care professionals 

to provide care of the same quality to people 

with disabilities as to others, including raising 

awareness of the human rights, dignity, 

autonomy and needs of people with disabilities 

through training and the promulgation of ethical 

standards for public and private health care. 

This is particularly important in light of reports 

from people with disabilities of receiving lower 

standards of care and frequently encountering 

unawareness among practitioners, despite 

seeking medical attention more regularly than 

people without disabilities. 

Article 25 also prohibits discrimination against 

people with disabilities in the provision of health 

insurance and prevents discriminatory denial of 

health care or health services on the basis of 

disability. The aim of this provision is similar to 

that of the ADA; it is particularly relevant where 

practitioners employ methods of discretionary 

access to reproductive health care (discussed 

earlier under Discrimination and Bias).936 Without 

guidelines, health care providers are free to 

make arbitrary judgments about people with 

disabilities.

Examples of Assisted Reproductive 

Technologies as Accommodations

An Accommodation for People with HIV 

Infection

The disability most often used as a basis for 

denying access to ART is HIV infection.937 In 

fact, until recently, most medical societies 

supported the denial of ART to people who are 

HIV-positive.938 Over time, however, both the risk 

of perinatal transmission and the prognosis for 

HIV-positive people have changed dramatically.939

These developments have led to reconsideration 

of policies discouraging the provision of ART to 

people who are HIV-positive.940

In February 2002, ASRM reexamined its 

policy on providing ART to HIV-positive patients. 

In a revised policy statement, ASRM noted the 

dramatic reduction in the rate of HIV transmission 

from infected women to their offspring, as well 

as the potential for “specific methods for sperm 

preparation and testing” to reduce the risk of 

transmission from infected men to uninfected 

women. As long as the provider has the clinical 

and laboratory facilities necessary to care for HIVpositive patients, the new policy states, “One can 

argue that health care providers are not acting 

unethically if they have taken all reasonable 

precautions to limit the risk of transmitting HIV to 

offspring or to an uninfected partner.” Citing the 

ADA, the report concludes that “unless health 

care workers can show that they lack the skill and 

facilities to treat HIV-positive patients safely or 

that the patient refused reasonable testing and 

treatment, they may be legally as well as ethically 

obligated to provide requested reproductive 

assistance.”941

ART helps HIV-positive people have a baby 

when they might otherwise not be able to without 

posing a significant risk of transmitting the 

182 National Council on Disability
disease to the baby. For example, when the male 

partner is positive and the woman is negative, 

a technique known as sperm washing can be 

used to diminish the risk of transmission.942 After 

sperm washing, the sperm can be combined with 

the woman’s ova using IVF or intracytoplasmic 

sperm injection (direct injection of the sperm 

into a selected oocyte).943 Alternatively, the 

couple can use donor gametes and ART to 

impregnate the female partner. This example 

illustrates how and why ART should be viewed 

as an appropriate accommodation for people with 

disabilities. 

Surrogacy as an Accommodation944

In certain cases of disability, where a woman 

is unable to carry a baby to full term, surrogacy 

may be her only means of procreating. Moreover, 

a recent study implies that at a certain point, 

surrogacy is a better option than other infertility 

treatments financially, and physically for the 

woman, and that it increases the chance of 

having a healthy baby. Fertility and Sterility 

Journal recently published a study that found 

that cycle-based fertility treatments, such as 

IUI and IVF, may have a point of diminishing 

returns.945 The study found that after two or three 

cycles of artificial insemination, the chances of 

a successful pregnancy may decrease.946 These 

realities support the proposition that surrogacy 

should be included among the appropriate 

accommodations offered to people with 

disabilities who are pursuing reproduction.947

Denying people with disabilities the opportunity 

to procreate using the assistance of a surrogate 

is an unnecessary limitation on the right to 

create a family.

Conclusion

Mutcherson states, “As the country debates the 

ethics of fertility treatment and worries about 

rogue fertility providers, it is critical to also raise 

voices in defense of those who face both natural 

and socially constructed barriers to parenting.”948

ART providers possess enormous power and 

must not be permitted to exert control on the 

basis of bias and speculation. Similarly, financial 

barriers must be eradicated to allow more people 

with disabilities access to these technologies. 

ART has the power to transform lives through 

procreation; for some people with disabilities, it is 

their only option.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 183
184 National Council on Disability
People with disabilities face significant 

barriers to creating and maintaining 

families. These obstacles—created by the 

child welfare system, the family law system, 

adoption agencies, assisted reproductive 

technology providers, and society as a whole—

are the result of perceptions concerning the childrearing abilities of people with disabilities. But 

are these views informed? Does disability affect 

one’s ability to parent? 

Social science research examining the effect 

of disability on parenting 

is scarce. Historically, 

the absence of data 

has encouraged the 

bias against parents 

with disabilities. Ora 

Prilleltensky, professor 

at the University of 

Miami and a person with 

a disability, says, “Despite the growing numbers 

of disabled adults who are having children, 

parents with disabilities continue to be primarily 

ignored by research and social policy. The 

sparse literature that can be found on the topic 

typically focuses on the relationship between 

parental disability and children’s well-being. In 

some cases, a negative impact is hypothesized, 

studied and ‘verified’; in other cases, the 

correlation between indices of dysfunction in 

children and parental disability is explored; and 

in others yet, the negative impact on children 

and the need to counsel them is taken as a 

given.”949

Drs. Megan Kirshbaum and Rhoda Olkin of 

TLG write, “Much of the research on parents 

with disabilities has been driven by a search for 

problems in these families. The pathologizing 

assumptions framing such research presuppose 

negative effects of the parents’ disabilities on 

their children. The perennial pairing of parents 

with disabilities and 

problems in children 

perpetuates the 

belief in deleterious 

effects of parental 

disability on children. 

Research reveals the 

widespread belief 

among professionals 

that disability severely limits parenting ability 

and often leads to maladjustment in children.”950

Kirshbaum and Olkin believe that such research 

may perpetuate negative beliefs in the general 

population. Correlation and causation are 

often confused in the research, resulting in an 

impression that children’s problems are caused 

by parents’ disabilities. Contextual problems—

such as poverty, the parents’ history of abuse, 

substance use, and a lack of adequate supports—

Chapter 12. The Impact of Disability on Parenti

Correlation and causation are often 

confused in the research, resulting 

in an impression that children’s 

problems are caused by parents’ 

disabilities

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 185
are frequently ignored, so any problems found 

by researchers end up being attributed to 

disability.951

However, high-quality studies indicate that 

disability alone is not a predictor of problems 

or difficulties in children and that predictors of 

problem parenting are often found to be the 

same for disabled and nondisabled parents.952

According to Dave Shade, “The available 

evidence suggests that although parents with 

disabilities may have a very different approach to 

parenting, the presence of a disability (physical 

or mental) is a poor correlate of long-term 

maladjustment in children.... Thus, although the 

data are far from clear, it seems safe to conclude 

that many parents with disabilities previously 

thought unable to raise a child at all may 

actually be able to do so, and that many more 

parents with disabilities may succeed in raising 

their children if provided appropriate support 

services.”953 Echoing Shade, Paul Preston, 

director of the National Center for Parents with 

Disabilities at TLG, says, “The implications of 

being raised by a disabled parent have been the 

source of numerous studies, public conjectures 

and professional scrutiny – all of which touch 

upon the fundamental rights of disabled people 

to be parents as well as the fundamental rights 

of children to be raised in an environment 

conducive to maximal development. Despite the 

lack of appropriate resources for most disabled 

parents and their children as well as persistent 

negative assumptions about these families, the 

vast majority of children of disabled parents have 

been shown to have typical development and 

functioning and often enhanced life perspectives 

and skills.”954 In fact, clinical experience proposes 

that predictors of problem parenting may be 

the same as those for nondisabled parents; 

particularly, a history of physical, sexual, or 

substance abuse in the parent’s family.955

Parents with Psychiatric Disabilities

Parents with psychiatric disabilities experience 

the most significant discrimination when 

they attempt to exercise their fundamental 

right to create and maintain families. Is this 

discrimination justified? Do psychiatric disabilities 

affect parenting abilities? According to Preston, 

“While studies on this population suggest 

that parental psychiatric disability is itself a 

significant risk factor for children, many of the 

additional findings are compromised by overgeneralizing about psychiatric disabilities. These 

and other investigators also suggest that the 

effects of parental psychopathology and social 

deprivation on children are difficult to separate 

and probably synergistic. These studies reiterate 

the importance of differentiating among types of 

psychiatric disability, enumerating risk factors as 

well as assessing family support and resources 

when investigating the impact of parental 

disability.”956 Similarly, in her article “Planned 

Failure: California’s Denial of Reunification 

Services to Parents with Mental Disabilities,” 

Nina Wasow says, “Social science research does 

not prove that people with mental disabilities 

cannot use services or reunify with their children; 

psychologists tend to over-predict dangerousness 

and lack the tools to assess parental competence 

accurately; and the social and cultural forces at 

play in the child welfare system lead experts to 

focus on certain parental weaknesses.”957

In 1998, Diane T. Marsh, professor of 

psychology at the University of Pittsburgh at 

Greensburg, released her findings from a national 

survey she conducted to determine the impact 

of serious mental illness on parenting.958 She 

186 National Council on Disability
wrote, “When adult children were asked whether 

there had been any positive consequences 

of growing up with parental mental illness, a 

majority answered affirmatively. They mentioned 

becoming better and stronger people, having 

greater compassion and tolerance, acquiring 

knowledge and skills, developing healthier 

attitudes and priorities, achieving stronger family 

bonds, experiencing pride and satisfaction as 

their parent recovered, and gaining greater 

appreciation of life. Even when paying a high 

price for parental mental illness, children 

may derive much satisfaction from this vital 

relationship.”959

Furthermore, according to Stephanie Gwillim, 

“Despite the increased risks associated with 

having a parent with a mental illness, the 

majority of children raised by parents with 

mental illness will never develop the psychiatric 

disorder of their parents. In fact, research has 

suggested that children are at heightened risk for 

psychopathology when taken from their parents 

and put into foster care. Long-term separation 

from a parent can result in a negative impact on 

the well-being and functioning of both children 

and parents. Thus, removing a child from his or 

her parent—in some situations—can ultimately 

cause more harm than good.”960

Parents with Intellectual or 

Developmental Disabilities

Parents with intellectual or developmental 

disabilities face similarly significant and 

detrimental discrimination, which raises the 

question, do intellectual and developmental 

disabilities affect parenting ability? According to 

Preston, research has historically been focused 

on the pathological bias against parents with 

intellectual and developmental disabilities, 

“pointing out that much of the literature on 

parents with intellectual disabilities has failed 

to distinguish between characteristics that 

facilitate and those that inhibit parenting 

abilities. Most of these studies have focused 

only on identifying parents with intellectual 

disabilities who provide inadequate childcare, 

rather than identifying predictors of adequate 

childcare such as coping and skill acquisition—

despite the fact that a substantial number 

of parents with intellectual disabilities have 

provided adequate care.”961

According to professors at the University 

of Minnesota School of Social Work, “Despite 

disproportionately greater involvement in the 

child welfare system, a growing body of research 

on the outcomes for children of parents with 

disabilities does not necessarily support the 

assumption that parents with disabilities are 

Parents with Psychiatric Disabilities

“When adult children were asked whether 

there had been any positive consequences 

of growing up with parental mental illness, 

...[t]hey mentioned becoming better and 

stronger people, having greater compassion 

and tolerance, acquiring knowledge and 

skills, developing healthier attitudes and 

priorities, achieving stronger family bonds, 

experiencing pride and satisfaction as 

their parent recovered, and gaining greater 

appreciation of life.” 

Diane T. Marsh and Rex M. Dickens, How to Cope with 

Mental Illness in your Family: A Guide for Siblings, 

Offspring, and Parents, (New York: Tarcher/Putnam, 1998), 

note 266, 30.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 187
more likely to abuse or neglect their children. 

Studies have found that children of parents with 

intellectual and developmental disabilities can 

have successful outcomes.”962

Chris Watkins notes, “Almost all studies have 

found a sizeable percentage of parents with 

developmental disabilities to be functioning 

within or near normal limits. In addition, many 

studies have found that parents labeled mentally 

retarded can and do benefit from training and 

support. Even researchers and commentators 

who have reached the most negative conclusions 

about cognitively disabled parents caution that 

such parents must be evaluated as individuals 

before reaching conclusions about their parental 

adequacy, or their ability to benefit from training 

and support.”963

Several researchers 

have used qualitative 

methods to investigate 

life experiences and 

outcomes of children of 

parents with intellectual 

disabilities.964 In 

Denmark, J. Faureholm interviewed 20 young 

adult children of mothers with intellectual 

disabilities.965 Despite the difficult circumstances 

of their growing up, including being bullied and 

ostracized by their peers, most of the children 

discovered an underlying personal strength that 

enabled them to overcome these experiences, 

and all but one maintained a close and warm 

relationship with their parents. Similarly, in 

England, internationally recognized researchers 

Tim Booth and Wendy Booth also interviewed 

adult children of parents with “learning 

difficulties.”966 They said, “The majority recalled 

happy, if not necessarily carefree, childhoods. 

Only three regarded their childhoods as wholly 

unhappy.” Significantly, most of the interviewees 

expressed positive feelings of love and affection 

toward their parents, and all maintained close 

contact with their parents. Tellingly, those who 

had been removed by the child welfare system 

had subsequently reestablished and maintained 

contact with their birth parents. “In both 

studies, family bonds endured despite time and 

circumstance intervening.”967

Recent research further demonstrates the 

absence of a clear correlation between low 

IQ and parental unfitness.968 In fact, studies 

have indicated that it is impossible to predict 

parenting outcomes on the basis of the results 

of intelligence testing.969 Thus, Chris Watkins 

says, “The available research suggests that 

factors unrelated to 

disability often have a 

more significant impact 

on parental fitness than 

does disability itself. The 

research also suggests 

a tremendous variance 

in the impact that 

disability has on parental fitness. Importantly, 

parenting services have been shown to make 

a difference for many parents with insufficient 

parenting skills. While few conclusions can 

be drawn about the parenting abilities of 

developmentally disabled parents as a group, it 

is clear that individual inquiry is required before 

decisions are made to remove children from 

parents.”970

Parents with Physical or Sensory 

Disabilities

Parents with physical or sensory disabilities 

also face significant impediments to creating 

and maintaining families as a result of 

[S]tudies have indicated that it is 

impossible to predict parenting 

outcomes on the basis of the results 

of intelligence testing

188 National Council on Disability
misconceptions about their parenting abilities. 

Does research support the belief that physical 

and sensory disabilities affect parenting ability? 

As with psychiatric and intellectual disabilities, 

research regarding parents with physical 

and sensory disabilities has historically been 

based on negative hypotheses and suggested 

outcomes.

In 1981, researchers F. M. Buck and G. W. 

Hohmann completed one of the first major 

studies to contradict the prevailing negative 

research.971 They found that children whose 

fathers had spinal cord injuries displayed normal 

development in all areas investigated (personal 

adjustment, sex role identification, body image, 

health patterns, athletic interests, interpersonal 

relationships, parent-child relationships, values 

and attitudes). 

In fact, according to Paul Preston, emerging 

research on parents with disabilities that has 

adopted a similar nonpathological framework, 

has revealed “a notable lack of norms and role 

models for parents and their children; more fluid 

and more flexible family roles; identification of 

external social and environmental obstacles 

as barriers to positive family functioning rather 

than as a result of the parent’s disability; greater 

problem-solving skills among family members; 

and, a desire for greater public awareness 

and more informed practice. Most of these 

investigations conclude there is average to 

better-than-average development and functioning 

among children of disabled parents and found 

positive outcomes as well: enhanced coping and 

problem-solving skills; greater acceptance of 

difference; and, more positive attitudes towards 

disability.”972

Further, according to Kirshbaum and Olkin, 

“Anecdotally, and in at least three studies, 

positive outcomes for older children of parents 

with disabilities have been cited. These include 

learning early the value of family and friends, 

displaying greater flexibility in family roles, 

finding humor even in dark situations, and putting 

quotidian problems in perspective. As children of 

parents with stigmatized conditions, they tend 

to learn about oppression, empowerment, and 

civil rights from an insider perspective and at 

an early age. Furthermore, children of parents 

with disabilities share in the disability experience 

and through it a connection to the disability 

community, a source of possible enrichment. But 

in focusing on the differences between parents 

with and without disabilities it is easy to lose 

sight of the similarities. Ultimately parenting 

is about loving, guiding, caring, and nurturing, 

disability status aside.”973

The supposition that children of parents with 

disabilities will be “parentified” (i.e., forced to 

care for their parents at a young age) is pervasive 

and persists in research. Rhoda Olkin, in her 

book What Psychotherapists Should Know About 

Disability, criticizes the exaggeration of this 

issue in research, distinguishing parentification 

from responsibility and interdependence in 

families. However, she acknowledges that 

parentification sometimes occurs, delineating 

factors to be considered in evaluating the 

appropriateness of children performing tasks 

for their parents with disabilities. She points out 

that when tasks seem unsuitable the problem 

may lie with inadequate social resources to 

support the family. Psychologist Lisa Jo Cohen 

addressed parentification in her dissertation.974

Her exploration of the assumption that schoolage children of parents with visual or physical 

disabilities are their parents’ caretakers revealed 

the opposite to be true; mothers reported using 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 189
vigorous caution when assigning tasks to their 

children. Parents often were reluctant to ask 

their children to do tasks common to children of 

parents without disabilities (e.g., taking out the 

garbage) if the parent felt this was in any way 

necessitated by the parent’s disability. 

TLG conducted similar research, comparing 

246 teens with parents with diverse disabilities 

to teens with parents without disabilities.975 Their 

research found no differences in the number of 

household chores reported by teens or parents 

across groups with or without disabilities. 

Moreover, few differences were found between 

parents with and without disabilities. For 

example, they agreed on how many friends 

their teens had, bedtimes, how active their 

teens were after school, and church or temple 

attendance. They ate dinner with their children 

most nights of the week, monitored their teens’ 

music and homework, were equally likely to 

have experienced a significant stressor in the 

past year, and described their families similarly. 

Finally, parents with disabilities reported that 

their teens were more comfortable around 

people with disabilities than did parents without 

disabilities.

Ana Torres-Davis, NCD Attorney Advisor, and her son, River, enjoying the beach 

at Cape Hatteras, NC.

190 National Council on Disability
Paul Preston and Jean Jacobs of TLG are 

concluding the first phase of an eight-year 

national study of young adult children of parents 

with disabilities.976 The study targets young 

adults ages 17–21 who were raised by at least 

one parent with a significant disability. During 

the first three years of the study (2009–2011), 

more than 1,000 high school seniors and college 

students participated. Study participants are 

from all 50 states, and parental disabilities 

include physical, intellectual, visual, hearing, 

cognitive, and psychiatric disabilities among 

people of diverse ethnicities. Preliminary findings 

from project data document numerous positive 

outcomes for these young adults. The majority 

of participants rated their overall experience 

of having a parent with a disability as positive: 

58 percent positive to very positive; 34 percent 

mixed; and 7 percent negative to very negative. 

The majority of participants cited specific 

advantages to having a parent with a disability 

compared with their friends and peers who did 

not have a parent with a disability, including 

learning better life skills (74 percent), becoming 

more compassionate (71 percent), respecting 

differences (71 percent), becoming more 

independent (70 percent), having a wider range 

of experiences (63 percent), becoming more 

aware of what is fair and just (59 percent), and 

becoming more resourceful (51 percent). The 

highest rated challenge of having a parent with 

a disability was financial; 70 percent reported 

limited finances at home. In contrast, only 

39 percent of these young adults thought they 

had too many responsibilities at home. Using 

Rosenberg’s validated measure of self-esteem, 

the mean score of participants was 34.03 

(SD = 5.17), reflecting a high esteem level in the 

sample as a whole. This compares with a mean 

of 30.20–34.40 in studies of healthy young adults 

whose parent did not have a disability. 

Ora Prilleltensky also examined the issue of 

parentification; specifically, whether it actually 

exists. Prilleltensky’s study did not find any 

indication of this phenomenon among the 

children and families of participants.977 She 

noted that, if anything, people with disabilities 

in her study indicated a desire to shield their 

children from the burden of care.978 As far as 

enhancing children’s well-being, in participants’ 

accounts of the child-rearing practices they use 

and their overall relationship with their children, 

the emphasis was on consistent parenting 

practices. A number of mothers mentioned 

reliance on verbal explanations and instructions. 

Other narrative accounts in the literature suggest 

that such children tend to respond to verbal 

instructions from an early age.979 According to 

Prilleltensky, an important consideration is the 

relationship between child-rearing practices and 

the level of formal and informal supports. She 

concludes:

“The experience of study participants suggests that the welfare of children need not 

be compromised due to parental disability. 

Study participants gave numerous examples from their daily lives that describe their 

attempts to ensure their children’s welfare. 

They also described loving relationships and 

positive communication with the children, 

as well as their pride in children who are 

well-adjusted, caring, and appreciative of 

human diversity. Alongside these accounts, 

and sometimes intertwined with them, 

are indications of how stressors such as 

poverty and lack of support can compound 

difficulties related to the disability. It is safe 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 191
to say that in the presence of internal and 

external resources and supports, parental 

disability in and of itself need not present 

a significant risk factor. On the other hand, 

the high rate of poverty, single parenthood 

and attitudinal barriers that characterize the 

lives of many women with disabilities may 

indeed, if unmitigated, present a risk to family well-being.”980

Conclusion

Current research, limited though it is, 

demonstrates that disability does not necessarily 

have a negative effect on parenting. Certainly, 

much more research in this area is needed; 

specifically, research that does not pathologize 

parental disability in a negative way. Moreover, 

research should focus on the effect of supports 

for parents with disabilities.

192 National Council on Disability
An African proverb, “It takes a village to 

raise a child,” recognizes the reality that 

parents, whether or not they have a 

disability, cannot and should not parent alone. 

Indeed, parents without disabilities rely on a 

variety of formal and informal supports to help 

them with their child-rearing responsibilities. 

Lightfoot and LaLiberte say, “Formal supports that 

are typically used among North American parents 

include paid daycare, housecleaning, paid tutoring, 

or even take-out restaurants. Typical informal 

supports include grandparents providing a night 

out for parents (respite care), neighbors shoveling 

snow off the driveway of a new parent (chore 

services), or parents joining together for carpooling 

to soccer practice (transportation services).”981

Parents with disabilities must have similar 

supports available to them and their families. 

Lisa, who has cerebral palsy and is a mother 

of two daughters, says, “When parenting with 

a disability, I think it’s important to embrace the 

fact that we are all interdependent and we each 

have different skills to contribute in raising happy, 

healthy children.... It’s that interdependence 

with other people that is so essential in raising 

children. Everyone has different skills, but we 

share what we can give.”982

Supporting parents with disabilities and 

their families in the community is not only the 

right thing to do, it is legally mandated. In the 

1999 case Olmstead v. L.C. ex rel. Zimring,

983

the Supreme Court recognized the importance 

of community integration of people with 

disabilities. In this landmark case, the Court 

held that unnecessary segregation of people 

with disabilities violated the ADA. The Olmstead 

decision sparked a national effort to maximize 

community placement and integration of 

people with disabilities. Susan Stefan, disability 

attorney, says, “Family integration is not only 

a natural corollary to community integration, 

it is a fundamental component of community 

integration.”984 Accordingly, all supports for 

parents with disabilities and their families must 

be community-based.

Appropriate supports are crucial to the lives 

of many parents with disabilities and their children. 

Lindsay,985 a mother with physical disabilities and 

a traumatic brain injury, affirms the significance of 

services: “Given my lack of trust in ‘the system’ 

and sparse community support resources, I 

cannot be both a full-time parent and a good 

parent. I share custody with my ex but only spend 

weekends with my kids. With proper support, I 

know I could be a good, full-time parent.” 

This chapter explores various supports that 

must be available to parents with disabilities and 

their families. Many of the supports discussed 

here already exist and need only be expanded or 

modified to better serve parents with disabilities 

Chapter 13.  Supporting Parents with Disabilities a

Their Families in the Community

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 193
and their families; others must be established. If 

these families receive the proper supports, most 

will undoubtedly thrive.

Personal Assistance Services

Personal assistance services (PAS) are a crucial 

support for more than 13.2 million people 

with disabilities.986 PAS help people with 

activities of daily living (ADLs), such as eating, 

bathing, dressing, and toileting, as well as with 

instrumental activities of daily living (IADLs), such 

as grocery shopping, cooking, and cleaning.987

PAS typically fall into two categories: informal 

(unpaid) services provided by family members, 

friends, or neighbors; and formal services that are 

typically paid by public funding, private insurance, 

or out of pocket.988

PAS have the potential to be of great help to 

parents with disabilities and their families. In a 

national survey of 1,200 parents with disabilities 

conducted for TLG by Linda Barker and Vida 

Maralami, nearly four-fifths (79 percent) reported 

a need for some type of personal assistance, and 

more than half (57 percent) reported needing help 

with parenting tasks.989 This survey revealed that 

parents with various disabilities would benefit 

from PAS: Approximately 60 percent of parents 

with psychiatric or physical disabilities reported 

that they would benefit from assistance with 

parenting activities, and approximately 50 percent 

of those with sensory or developmental 

disabilities said they would benefit.990

According to this survey, parents with 

disabilities need assistance with a variety of 

Former NCD Member Joe Pak standing on a football field with his wife and his 

son after a high school football game.

194 National Council on Disability
parenting tasks. They need the most help 

enjoying recreational activities with their children 

(43 percent).991 Forty percent reported needing 

assistance with “chasing and retrieving their 

children” and 40 percent reported needing 

assistance with traveling outside their home.992

Other areas in which parents reported needing 

assistance were lifting/carrying children, organizing 

supplies/clothing, disciplining children, playing with 

children, bathing children, childproofing the home, 

and advocating for children.993

Cost is the most significant barrier for parents 

with disabilities who need PAS to help them 

with parenting activities. Pursuant to the Social 

Security Act, states may elect, as an optional 

benefit, to provide personal care services. 

According to the Centers for Medicare and 

Medicaid Services State Medicaid Manual:

“Personal care services (also known in 

States by other names such as personal 

attendant services, personal assistance 

services, or attendant care services, etc.) 

covered under a state’s program may include 

a range of human assistance provided to persons with disabilities and chronic conditions 

of all ages which enable them to accomplish tasks that they would normally do for 

themselves if they did not have a disability. 

Assistance may be in the form of hands-on 

assistance (actually performing a personal 

care task for a person) or cuing so that the 

person performs the task by him/herself. 

Such assistance most often relates to performance of ADLs and IADLs. ADLs include 

eating, bathing, dressing, toileting, transferring, and maintaining continence. IADLs capture more complex life activities and include 

personal hygiene, light housework, laundry, 

meal preparation, transportation, grocery 

shopping, using the telephone, medication 

management, and money management. 

Personal care services can be provided on a 

continuing basis or on episodic occasions.”994

Government-funded PAS do not allow 

attendants who are assisting parents with 

disabilities to also care for their nondisabled 

children, which creates a significant challenge for 

these parents.995 According to the survey, only 

10 percent of respondents who needed parenting 

help used government-funded PAS for parenting 

tasks.996 The rest of the respondents reported 

finding other ways to address this need. The 

most common solution, reported by 68 percent 

of parents, was to get unpaid help from family or 

Personal Attendant Services for 

Parenting Tasks

According to a national survey of 1,200 

parents with disabilities, of those 

respondents who needed parenting help:

■ 10% used government-funded PAS

■ 68% used unpaid help from family or friends

■ 43% paid for extra assistance out of pocket

■ 35% went without some personal care 

or household help to pay for parenting 

assistance

■ 19% felt unable to provide all the care their 

children needed

Linda Toms Barker and Vida Maralami, Challenges and 

Strategies of Disabled Parents: Findings from a National 

Survey of Parents with Disabilities (Berkeley, CA: Through 

the Looking Glass, 1997), note 185, 6-8, 6-9.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 195
friends,997 although 43 percent reported paying 

for extra assistance out of pocket.998 Equally 

troublesome—and a clear sign of their devotion 

to their children—35 percent of parents reported 

going without some personal care or household 

help they needed for themselves.999 Finally, 

19 percent of the parents reported that they felt 

unable to provide their children with all the care 

they needed.1000

Other Western nations do not have this 

problem. In Canada, for example, a parent 

who requires personal care is also eligible for 

services that will help with child care tasks.1001

The service providers who help with such tasks 

are called nurturing assistants.1002 However, not 

all disabilities entitle an individual to personal 

care,1003 and lack of information regarding 

this service can be a barrier for parents.1004 In 

Sweden, the right to personal care is based 

on function, so access to care is not limited 

by diagnosis.1005 Once qualified, people with 

disabilities may use their personal care hours 

for whatever tasks they require, including child 

care.1006 Personal care is mainly for parents 

with physical disabilities, although parents with 

intellectual disabilities may use it as well.1007

The debate in Sweden is not over the right to 

parenting support services; rather, attachment 

theory has triggered a discussion about the 

impact of third party caretaking on children.1008

PAS have potential to greatly assist parents 

with their disabilities and their families, and the 

benefits of PAS go beyond improving quality of 

life—they have been found to be cost-effective, 

too. Several states have conducted small pilot 

projects in which foster care money is put 

toward well-coordinated aid to parents in crisis—

because of substance abuse, disabilities, or other 

challenges—in hopes of keeping their children 

out of the foster care system.1009 Santa Clara, 

one of the first California counties to try the 

new approach, calculated that for every dollar it 

spent on the intensive program, it saved $1.72 

in federal, state, and county funds earmarked 

for foster care, not counting court costs involved 

in arranging foster care.1010 Adaptive parenting 

equipment and home modification can also prove 

cost-effective by reducing the need for PAS 

hours. 

The importance of PAS for parenting was 

emphasized by several of the parents who 

spoke to NCD. Rachel,1011 a widowed mother and 

wheelchair user with a physical disability, often 

uses PAS to assist her in parenting. Although 

she acknowledges that she is not supposed 

to, she has her attendant help with parenting 

activities such as meal preparation, transporting 

her daughter, recreation activities, and being 

available if her daughter has a behavioral 

incident. Rachel, who is on a limited income, 

pays her attendant extra for this assistance and 

wishes Medicaid allowed PAS hours to be used 

for parenting. Christina,1012 a single mother of 

three children, all of whom also have disabilities, 

Parenting Assistance in Other 

Countries

Canada – A parent who requires personal 

care is also eligibile for “nurturing assistants” 

who help with child care tasks.

Sweden – People who qualify for personal 

care based on function may also use their 

personal care hours for any tasks required, 

including child care. 

196 National Council on Disability
uses PAS to help her with parenting activities. 

Christina is a wheelchair user with significant 

physical and sensory (visual and hearing) 

disabilities. She has consumer-directed attendant 

services, which she uses to care for her whole 

family. She is on a very limited income and pays 

out of pocket for some of these services. Like 

Rachel, Christina wishes PAS were available to 

assist in parenting; she wants Medicaid to add 

parenting to these services. Jessica1013 has also 

used PAS to help her with parenting activities. 

She is a wheelchair user and has a physical 

disability; her husband is a little person. When 

their twins were newborns, Jessica hired an 

assistant to help her care for her children, which 

she and her husband paid for out of pocket. 

She, too, wishes PAS covered parenting. Other 

parents also reported using PAS to assist them; 

many of them forgo their own care so the 

assistance can help with 

parenting.

Some parents with 

disabilities expressed the 

need for PAS to assist 

them with parenting on 

an intermittent basis—

something like respite care. Susan,1014 a mother 

of two children, wishes intermittent PAS were 

available to provide respite during the episodic 

illnesses she experiences owing to her disability 

(immune system disorder). Lindsay,1015 a mother 

of two children, reported needing PAS but not 

being able to get them. Lindsay has a physical 

disability and an acquired brain injury. She wishes 

PAS could help her with tasks such as reminding 

her to take her medication and taking her children 

out when she feels “sad.” Ora Prilletensky, in her 

article “A Ramp to Motherhood: The Experiences 

of Mothers with Physical Disabilities,” noted that 

in a recent study she had conducted, one mother 

reported that when her children were younger, 

she was often hospitalized. With no one to care 

for them during the regular hospitalizations, she 

was forced to turn to child welfare. Reintegration 

was always challenging, and her children lacked 

consistency.1016

PAS are important for many parents with 

disabilities. This critical support can either 

make or break a family. So, why are services 

funded only if the child also has a disability? 

To address this significant need, CMS must 

expand its definition of ADLs to include parenting 

activities, so that funded PAS can be used to help 

consumers with their parenting responsibilities.

Housing

Having a home is crucial to creating and 

maintaining a family. However, securing 

accessible, affordable, 

and appropriate housing 

is a significant barrier for 

people with disabilities. 

In fact, it is nearly 

impossible for people 

with disabilities living 

on Supplemental Security Income (SSI) to obtain 

decent, safe, affordable, and accessible housing 

in the community without a permanent housing 

subsidy.1017 Workers must earn $15 an hour over 

a 40-hour work week to afford a one-bedroom 

rental at the national average.1018 This means that 

people with disabilities who receive SSI would 

have to triple their income to afford housing. 

A recent government report estimated that at 

least 43 percent of homeless adults in shelters—

approximately 421,000 people—identify as 

people with a disability.1019 The unique needs of 

parents with disabilities and their families further 

For parents with disabilities, the lack 

of affordable accessible housing 

frequently affects child custody

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 197
compound the challenges of securing accessible, 

affordable, and appropriate housing.

The Barker-Maralami survey mentioned earlier, 

of 1,200 parents with disabilities, revealed several 

significant housing barriers experienced by these 

parents and their families. Forty-three percent 

of the parents who responded identified at least 

one problem in finding appropriate housing for 

their families.1020 And when researchers reviewed 

the responses to other questions in the survey, 

they found even more reports that housing was 

an issue: Nearly two-thirds (64 percent) of the 

respondents mentioned some kind of challenge 

related to finding appropriate housing.

1021

Parents with disabilities experience a variety 

of difficulties in securing housing appropriate 

for raising a family.1022 In addition, a third of 

parents with disabilities responded that housing 

was too expensive, and more than a quarter 

reported that housing lacked sufficient space 

(especially storage space) and had rooms that 

were too small to accommodate their physical 

needs.1023 One-quarter reported difficulty finding 

housing that was accessible, and many others 

reported that housing was poorly suited to 

families with children—too few rooms, lack 

of safe outdoor play areas, or located on busy 

streets with traffic.1024 Twenty-five percent of the 

parents said that accessible housing does not 

accommodate children.1025 It appears that housing 

developers and housing program administrators 

lack awareness that people with disabilities are 

not all single, living alone, with an attendant or 

a roommate.1026 For some parents, the need 

for physical access limits the availability of 

appropriate family housing.1027

Because accessible housing often does not 

accommodate children and housing designed for 

families often does not provide the accessibility 

features that many parents with disabilities 

need, most parents (60 percent) reported having 

to make modifications to their housing so that 

it better met their needs.1028 The cost to make 

necessary housing modifications is a significant 

barrier for many parents with disabilities and 

their families. Since very limited—if any—public 

assistance is available for modifying housing, 

84 percent of parents reported having had to 

pay for the modifications themselves.1029 Nearly 

60 percent reported that they were unable 

complete some housing modifications owing to 

lack of funds.1030 Barker and Maralami concluded, 

“Given the lack of accessible housing that is 

appropriate for raising families, and the lack of 

sufficient income to pay for housing changes, 

many families simply have to do without many of 

the housing features that they feel are necessary 

or would make their lives easier.”1031

Housing Challenges for Parents 

with Disabilities

In a national survey of 1,200 parents with 

disabilities:

■ 64% -- some kind of challenge related to 

finding appropriate housing. 

■ 33% -- housing was too expensive

■ 25%+ -- housing lacked sufficient space

■ 25% -- difficulty finding accessible housing

■ 25% -- accessible housing doesn’t 

accommodate children

Linda Toms Barker and Vida Maralami, Challenges and 

Strategies of Disabled Parents: Findings from a National 

Survey of Parents with Disabilities (Berkeley, CA: Through 

the Looking Glass, 1997), note 185, 6-8, 6-9.

198 National Council on Disability
In light of the range of housing barriers and 

the scarce resources available to pay for home 

modifications, it is not surprising that fully a third 

of the survey respondents articulated specific 

building changes that would be useful to them for 

parenting.1032 Although wheelchair access was a 

key issue for many parents with disabilities, the 

biggest unmet need reported was space. More 

than half of the parents said that larger or more 

rooms would help them in parenting.1033 Providers 

of baby care adaptations have found that 

limited space is a common barrier to installing 

appropriate equipment in homes. Barker and 

Maralami write, “The other changes that would 

help are all associated in one way or another 

to physical barriers. 

Many of these would 

be barriers regardless 

of whether the 

respondents were raising 

children. However, it 

is important to note 

that many families find 

themselves in housing 

arrangements that are 

inaccessible because the housing that is built 

to be accessible to individuals with physical 

disabilities does not accommodate families with 

children. Also, access to outdoor play areas at 

home is a particularly important issue for disabled 

people who are raising children because of the 

added transportation and logistical difficulties of 

taking children to a park or recreation program for 

outdoor play.”1034

Home is of great importance for most 

families—a place of cherished memories, 

warmth, and comfort. But for many parents with 

disabilities and their families, home is more likely 

to mean inaccessibility and unaffordability. For 

parents with disabilities, the lack of affordable 

accessible housing frequently affects child 

custody. A significant increase in affordable, 

accessible, and integrated housing is required for 

parents with disabilities and their families, as well 

as increased funding for home modifications. 

Specifically, HUD must require public housing 

authorities to have at least 50 percent of their 

accessible units in family housing developments. 

Such units must comply with all relevant 

federal disability access requirements and must 

include the same family-oriented space and 

appointments found in other units. HUD should 

develop a national modification fund to pay for 

reasonable modifications that are necessary 

to make private units 

accessible for parents 

with disabilities and 

their families. HUD 

should also develop a 

program for parents with 

disabilities who are firsttime homeowners.

Transportation

Having appropriate and accessible transportation 

is critical for parents with disabilities and their 

families, but research demonstrates that people 

with disabilities are more likely than people 

without disabilities to report that they have 

inadequate transportation: 34 percent versus 

16 percent, respectively—a gap of 18 percent.1035

The realities behind these statistics reveal lives 

severely limited by the lack of transportation 

options. Some people with disabilities who 

would otherwise be able to work cannot do so 

because of inadequate transportation. Others 

cannot shop, socialize, go to religious services, 

or even leave their homes. Some people with 

[P]eople with disabilities are 

more likely than people without 

disabilities to report that they 

have inadequate transportation: 

34 percent versus 16 percent, 

respectively—a gap of 18 percent

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 199
disabilities who need medical services are 

confined to institutions solely because of the 

lack of safe, reliable transportation options to 

get them to these services.1036 For parents 

with disabilities and their families, transportation 

remains a significant barrier.

Transportation affects all areas of the lives of 

parents with disabilities and their families—from 

child care to housing to participating in a child’s 

education to accessing a child’s medical care. 

It was the barrier encountered by the largest 

number of parents in the aforementioned national 

survey:1037 79 percent of survey respondents 

identified transportation as a barrier at least once 

in the survey.1038

Not surprisingly, the majority of respondents 

with physical or sensory (mostly visual) disabilities 

identified transportation as an issue. However, 

it was also raised as a significant concern by 

parents with other disabilities.1039 As the study 

revealed, although parents with physical or 

sensory disabilities are the most likely to report 

transportation problems, more than half of 

parents with psychiatric or intellectual disabilities 

also reported problems with transportation.1040

Parents with disabilities use a variety of 

modes of transportation. Interestingly, the survey 

found that parents whose primary disability is 

physical are more likely to use their own car or 

van than parents whose primary disability is not 

physical (85 percent versus 64 percent).1041

Surveyors speculate that this may be due in part 

to limited accessible public transportation in 

many parts of the country.1042 Far fewer parents 

with physical disabilities reported using public 

transportation than parents with other disabilities 

(13 percent versus 33 percent).1043 The survey 

found that parents with sensory disabilities were 

much more likely to use “other” forms of 

transportation than parents with other 

disabilities;1044 these included family and friends, 

taxis, and walking.1045

The study further noted that many parents 

with disabilities used paratransit services, with 

little variation by on disability.1046 Unfortunately, 

paratransit comes with its own set of barriers. 

A national study conducted by TLG that is near 

completion was prompted by recommendations 

of the Bay Area Parents with Disabilities and Deaf 

Parents Task Force in 2006.1047 The study followed 

years of parent complaints and confusion 

about policies that affected their ability to use 

paratransit to travel with their young children. 

Critical concerns for parents were policies stating 

that only one companion could accompany a 

parent on a ride; lack of driver assistance with 

carrying and installing car seats; inability to 

store car seats on paratransit vehicles; and not 

being able to schedule chain trips in which the 

paratransit driver waits for the parent during 

day care or school drop-offs. Preliminary data 

analyses from the national study show that 

although paratransit agencies vary in their policies 

and practices, a majority responded that they 

currently cannot guarantee space for more than 

one child companion; do not assist with car seat 

installation; do not carry car seats from a location 

beyond the curb; do not allow parents to store car 

seats on paratransit vehicles; and do not allow for 

10-minute “scheduled waits” for parents to drop 

off their children. An additional barrier for parents 

in using paratransit is the high cost: Agencies are 

authorized to charge parents and their children 

twice the price of the fixed-route fare.1048 Although 

individual agencies may try to accommodate the 

needs of parents by ensuring that entire families 

can ride together and providing assistance beyond 

what is required with carrying and installing car 

200 National Council on Disability
seats, these practices need to be codified so that 

receipt of the services does not depend on the 

goodwill of drivers but is mandated by paratransit 

policy. The current lack of assistance parents 

receive from drivers when using paratransit and 

the significant cost of travel can make paratransit 

difficult, if not impossible, for parents traveling 

with their children. 

The Department of Transportation’s Federal 

Transit Administration (FTA) has issued only one 

Letter of Finding to a parent who was denied the 

right to bring her child on paratransit.1049 While the 

finding was for the parent, noting that assistance 

in loading the child safety seat and allowing the 

child was required for her to access the service, 

Letters of Finding are not precedential in nature 

according to the FTA, although they may be 

helpful to others who are dealing with the same 

issue involving similar facts.1050

Appropriate and accessible transportation is 

crucial to the lives of parents with disabilities 

and their families. Nevertheless, it remains one 

of the most challenging areas for many parents 

with disabilities and their families. To adequately 

support these families, significant attention 

must be given to improving transportation. 

The Department of Transportation must issue 

guidance to paratransit providers on their legal 

obligations to transport parents with disabilities 

and their families to support the successful 

execution of parenting and employment roles by 

people with disabilities.

Public Benefits and Poverty

The financial status of people with disabilities 

is bleak: Since 1981, the income gap between 

households with and without a person with a 

work limitation (the Current Population Survey 

definition of disability) has grown steadily, from 

a difference of about $19,000 in 1980 (in 2008 

dollars) to nearly $28,000 in 2008.1051 Median 

earnings for people with disabilities dropped 

7 percent from 2008 to 2009, 2 percent more 

than the drop for persons without disabilities 

(5 percent).1052 Further, the number of people 

with disabilities who live in poverty is three times 

the number of people without disabilities.1053

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 201
Parents with disabilities and their families are 

not protected from this harsh reality. In fact, the 

most significant difference between parents 

with disabilities and parents without disabilities 

is economic: The median family income for 

parents with disabilities is $35,000, compared 

with $65,000 for parents without disabilities.1054

Research also indicates that more parents with 

disabilities are unemployed (48 percent versus 

22 percent).1055

Parents with disabilities are more likely than 

parents without disabilities to receive public 

benefits.1056 A recent survey revealed that 

52 percent of parents with disabilities receive 

SSI.1057 Specific data are limited regarding other 

public benefits parents with disabilities and their 

families receive; however, in 2010, 3.6 million 

households (20 percent of all households) with 

a person with a disability received SNAP each 

month.1058 Presumably many of those households 

included parents with disabilities. And it is 

likely that a substantial number of parents with 

disabilities and their families receive Social 

Security Disability Insurance (SSDI), Medicaid, 

and Medicare.

Advocates and researchers have focused 

some attention on Temporary Assistance 

for Needy Families (TANF), which research 

suggests a significant number of people 

with disabilities receive (presumably many 

are parents with disabilities).1059 TANF was 

created through the Personal Responsibility 

and Work Opportunity Reconciliation Act of 

1996 (PRWORA); it provides a small monthly 

cash benefit to low-income families. Pursuant 

to PRWORA, parents who receive TANF must 

work a certain number of hours (determined 

by the age of their children).1060 PRWORA also 

imposed a five-year lifetime limit on assistance. 

Advocates and researchers contend that these 

rules disproportionately affect parents with 

disabilities, particularly parents with psychiatric 

or intellectual and developmental disabilities, 

a group that includes a substantial portion of 

TANF recipients.1061 Without appropriate family 

and work supports to overcome barriers to 

employment, parents with disabilities, especially 

single mothers, may be unable to comply with 

the PRWORA/TANF regulations, resulting in a 

loss of benefits to their families.1062 Advocates 

say that the work requirements do not 

specifically consider disabilities as a barrier to 

work.1063 In addition, low-paying work and lack of 

job training programs for people with disabilities 

are common obstacles to employment,1064 and 

people with disabilities still face significant 

discrimination in the hiring process, further 

hindering their ability to comply with the work 

requirements. Finally, some parents with 

disabilities may need long-term employment 

support, such as career planning and training.1065

The financial status of parents with disabilities 

and their families is particularly significant, 

because they often have additional expenses 

connected to their disability (e.g., medication, 

adaptive equipment, transportation, and housing 

modifications).1066 Parents with disabilities also 

often have additional expenses for assistance 

in caring for their children (e.g., specialized 

transportation or PAS). According to the TLG 

report Visible, Diverse, and United: A Report 

of the Bay Area Parents with Disabilities and 

Deaf Parents Task Force, “The working poor and 

even those families of medium income might 

not qualify for financial assistance or for certain 

types of services because their family income 

disqualifies them for services (e.g., free school 

lunches). Yet, these families often cannot afford 

202 National Council on Disability
services, equipment, etc., without reduced fees 

or sliding scale because of extra out-of-pocket 

disability expenses.”1067

Many parents with disabilities expressed 

frustration with the system. According to 

Rachel,1068 a disabled mother with one child, the 

biggest barrier is that “the system keeps people 

with disabilities poor.” She pointed out that 

parents with disabilities who receive SSI benefits 

get no additional SSI monies if they have children. 

Rachel believes that “a kid in poverty is going to 

have problems.”

Unfortunately, states are taking drastic actions 

that further undermine parents with disabilities 

and their children. Recently, New Hampshire 

has begun counting SSI income in calculating 

household income to determine welfare 

eligibility.1069 Nearly 1,200 families will lose this 

aid and another 420 will have their benefits 

greatly reduced. Idaho is the only other state 

to do this. Other states—such as Minnesota, 

West Virginia, and North Carolina—have tried or 

considered counting SSI. 

Research demonstrates that parents with 

disabilities and their families have a substantial 

likelihood of living in poverty, and they depend 

heavily on public benefits. Public benefits 

must be appropriate and accessible for these 

families. SSA must begin an exploratory project 

to determine how to better serve SSI and SSDI 

beneficiaries, focusing on ways to increase 

financial assistance to parents with disabilities 

and their families. NCD recommends that the 

HHS ACF provide additional supports to parents 

with disabilities who receive TANF, including 

job training, child care, and transportation. 

State vocational rehabilitation agencies also 

must assist parents with disabilities who 

receive TANF.

Health Care

Proper health care, especially reproductive health 

care, is crucial for people who want to create and 

maintain families, but women with disabilities 

face significant barriers to receiving accessible, 

affordable, and appropriate health care.

The health care profession has a longstanding history of curtailing the reproductive 

rights of people with disabilities. While the 

eugenics movement is considered a thing of 

the past, many health care providers hold on to 

stereotypes about people with disabilities and 

their sexuality. According to Carrie Killoran, a 

mother with a disability, “Whether a woman is 

born with a disability or acquires it later in life, the 

message she gets from the medical system and 

society is that she is ineligible for normal societal 

female roles of lover, wife, or mother.”1070

Studies have consistently demonstrated that 

the attitudes of physicians and other health care 

professionals toward people with disabilities are 

as negative, if not more negative, than those 

of the general public.1071 One study found that 

“health professionals significantly underestimate 

the quality of life of people with disabilities 

compared with the actual assessments made by 

people with disabilities themselves. In fact, the 

gap between health professionals and people 

with disabilities in evaluating life with disability 

is consistent and stunning.”1072 For instance, “In 

a survey study of attitudes of 153 emergency 

care providers, only 18 percent of physicians, 

nurses, and technicians imagined they would be 

glad to be alive with a severe spinal cord injury. 

In contrast, 92 percent of a comparison group of 

128 persons with high-level spinal cord injuries 

said they were glad to be alive.”1073

The misconceptions and negative attitudes 

held by many health care professionals about 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 203
people with disabilities and reproduction have 

significant and detrimental effects on the health 

of these people. According to Michael Stein, an 

international disability expert, because of the 

“nonsexuality myth” harbored by many health 

care professionals about people with disabilities, 

women with disabilities often receive inadequate 

and inaccessible health care.1074 “The prevailing 

presumption is that if women with disabilities 

will not or cannot engage in sexual activity, then 

they do not need access to gynecological health 

care.”1075 For example, people with disabilities 

are almost never considered to be in need of 

information about HIV 

and treatment for it.1076

As a result, although 

people with disabilities 

are nearly as likely to be 

sexually active as people 

without disabilities, their 

HIV infection rate is up 

to three times higher.1077

Similarly, women with 

disabilities are less likely to receive information 

on contraception.1078 One study found that only 

19 percent of women with physical disabilities 

received sexuality counseling.1079

Women with disabilities are often coerced 

into terminating their pregnancies, as well as 

being strongly discouraged from ever becoming 

pregnant. For instance, Rachel,1080 an adoptive 

mother with physical disabilities, was told by a 

nurse in 1994 never to have children because they 

would have disabilities, although her disability is 

not inheritable. This encounter left Rachel “forever 

over medical personnel.” Similarly, Susan,1081 now 

a mother of two children, was told at age 17 never 

to have children because of her disability (an 

immune system disorder). 

When women with disabilities are provided 

with reproductive health care services, it is 

often sterilization. The literature suggests that 

women with disabilities “are more likely to 

have hysterectom[ies] at a younger age than 

are women without disabilities, and more likely 

than their able-bodied counterparts to have 

a hysterectomy for non-medically necessary 

reasons, such as birth control, personal 

convenience, or at the request of a parent or 

guardian.”1082 Women’s accounts suggest that the 

idea of having a hysterectomy often comes from 

health care providers, not the woman herself.1083

A study conducted by the 

Center for Research on 

Women with Disabilities 

at Baylor College of 

Medicine reported that 

women with physical 

disabilities had a higher 

rate of hysterectomy 

(22 percent versus 

12 percent for those 

without disabilities) and were more likely to have 

this procedure done at a younger age.1084

Moreover, women with disabilities often 

encounter pressure from doctors and society 

to abort a pregnancy because of the possibility 

of passing on disabilities to their children—even 

if the disability is not inheritable.1085 During 

Lindsay’s1086 first pregnancy, her doctor assumed 

that because of her disability (which at the time 

was only physical) she was “high-risk” and 

encouraged her to have an abortion. After that 

encounter, she transferred her care to midwives, 

whom she reports were very supportive.

Further, although the Rehabilitation Act and 

the ADA require that health care programs, 

institutions, and offices offer physical and 

[W]omen with physical disabilities 

had a higher rate of hysterectomy 

(22 percent versus 12 percent for 

those without disabilities) and were 

more likely to have this procedure 

done at a younger age

204 National Council on Disability
programmatic accessibility, very few are fully 

accessible.1087 Structural barriers to receiving 

adequate and informed reproductive care include 

limited professional training and competency of 

primary care and reproductive care specialists; 

inadequate or no health insurance coverage 

for visits to specialists; poor physical access to 

usable and adapted or specialized examination 

and diagnostic equipment; and negative or 

discriminatory provider attitudes.1088

According to one qualitative study, health care 

providers sometimes expressed surprise that 

women with disabilities would be sexually active. 

As a result, they frequently did not discuss the 

use of contraceptives or evaluate the women 

for STDs. Some women with disabilities report 

that they avoid regular visits to the gynecologist 

because services are so difficult to obtain.1089

One study reported that a gynecologist caring for 

a woman who uses a wheelchair assumed she 

was not sexually active and, therefore, saw no 

need to test for STDs.1090 Further, research shows 

that women with disabilities are less likely to 

receive pelvic examinations, including a Pap test, 

although these tests are considered routine care 

for adult women.1091

Parents’ Stories

Cassandra’s Story

Women with disabilities often face significant barriers to receiving proper prenatal care as 

well as access during the delivery of their children. Cassandra,1092 a wheelchair user with 

significant physical disabilities, reported receiving improper prenatal care, including not being 

weighed during her entire pregnancy because her doctor did not have an accessible scale, 

and not receiving proper examinations because no one in her doctor’s office would help her 

transfer from her wheelchair to the examination table. She also faced attitudinal barriers. 

For example, on learning that she was pregnant, her doctor said, “How did that happen?” 

Cassandra was also referred to a physical therapist to assess her ability to parent. As a 

result of these experiences, she believes that the core of the problems many parents with 

disabilities face is with the medical community. She wishes health care professionals had 

training to understand disability. 

Samantha’s Story

Samantha,1093 a mother of one child, also encountered significant physical barriers to proper 

health care during her pregnancy. At 31 weeks and again while she was in labor, she was unable 

to transfer from her wheelchair to the gurney because the gurney did not go low enough. 

Women with disabilities also face programmatic barriers to receiving proper health care. 

Danielle’s Story

Danielle,1094 a mother of three children, reported to NCD that her doctors and the hospital at 

which she delivered would not provide sign language interpreters for her.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 205
Many of the barriers people with disabilities 

face when receiving health care are a result of 

health care professionals not fully understanding 

how to care for this community. For instance, 

many women with disabilities are encouraged 

to have a cesarean section “simply because 

of anxiety on the provider’s part.”1095 As the 

risk and rate of cesarean sections are known 

to be excessively high, this ongoing policy of 

recommending the procedure unnecessarily 

for women with disabilities is especially 

troubling.1096 In The Disabled Woman’s Guide 

to Pregnancy and Birth,

1097 based on interviews 

with 90 women with physical disabilities, Judith 

Rogers, a mother of two who has cerebral 

palsy, devotes an entire chapter to exploring the 

assumptions that can lead to recommendations 

of unnecessary cesarean deliveries for mothers 

with disabilities. She also covers the decision 

to have a baby; parenting with a disability; 

emotional concerns of the mother, family, and 

friends; nutrition and exercise in pregnancy; 

a look at each trimester; labor and delivery; 

the postpartum period; and breast-feeding.1098

She notes, “My husband and my daughter are 

both doctors. And in the 30 years between 

their medical school experiences, nothing has 

been added regarding disability.”1099 She sums 

up the attitudinal bias this way: “The medical 

community sees us and thinks, ‘If it doesn’t 

work on the outside, how can it work on the 

inside?’”1100

In the same vein as the assumptions regarding 

the need to rely on cesarean delivery for women 

with disabilities, many women with disabilities 

are unnecessarily referred to high-risk pregnancy 

specialists. According to one expectant mother 

with a disability, when she visited the specialist 

her physician had referred her to, she was told that 

her pregnancy was not high-risk but that many 

providers make that assumption if the mother has 

a disability. The specialist said, “You’re probably 

the least high-risk woman to come into my 

practice, but you make providers nervous because 

you’re not in their textbooks.”1101

Health care professionals must not 

only comply with their legal obligations to 

be fully accessible but must also provide 

reasonable accommodations. For example, 

an accommodation for a pregnant woman 

who is blind or has low vision, or a woman 

with intellectual disabilities, might be a private 

tour of birthing facilities.1102 For women who 

are deaf or hard of hearing, appropriate 

accommodations might be to identify the 

interpreter before delivery or to meet with labor 

and delivery staff and discuss the best ways to 

communicate (e.g., transparent masks for lip 

reading).1103

In addition to structural and programmatic 

accessibility barriers, many women with 

disabilities do not receive appropriate 

preconception care because of financial barriers. 

According to the CDC, preconception care is 

“a critical component of health care for women 

of reproductive age.”1104 In a Kaiser Foundation 

study, Usha Ranji and Alina Salganicoff write, 

“The goals of preconception care are (1) to 

promote and improve the health of women 

of reproductive age prior to conception, and 

(2) to improve pregnancy-related outcomes. 

Preconception care not only improves the health 

of a woman prior to pregnancy but also optimizes 

the health of the fetus during pregnancy.”1105

Despite the importance of preconception 

care, Medicaid (the largest health insurer of 

people with disabilities) does not recognize it 

as a defined category of covered care.1106 In 

206 National Council on Disability
fact, a recent survey revealed that although 

state Medicaid programs generally cover 

contraceptives, most do not provide any further 

preconception care.1107 Kathryn,1108 a wheelchair 

user and little person, was stunned to learn from 

her physician, a few months before she became 

pregnant, that Medicaid would not pay for a prepregnancy consultation.

Accessible, appropriate, and affordable health 

care, particularly reproductive health care, is crucial 

to the well-being of parents with disabilities and 

their families. However, for most it remains largely 

inaccessible and inappropriate. The Agency for 

Healthcare Research and Quality (AHRQ), under 

its mandate to undertake research on priority 

populations, should 

promote research that 

clearly identifies the 

barriers encountered by 

women with disabilities 

when they seek 

reproductive health 

care. The Association 

of American Medical 

Colleges (AAMC) and the Liaison Committee 

on Medical Education (LCME) should convene 

a workgroup to identify specific disability 

competencies that should be required of health 

care professionals before graduation from medical 

and residency training programs, and should 

translate these competencies into specific course 

recommendations that can be adopted by medical 

training programs. Further, DOJ must increase 

its monitoring and enforcement of the ADA and 

Section 504 of the Rehabilitation Act for health 

care facilities and programs. Finally, CMS must 

identify and implement mechanisms to pay for 

comprehensive preconception care for Medicaid 

and Medicare beneficiaries with disabilities.

Peer Supports

Most parents and prospective parents rely heavily 

on their peer support network. Peer support 

provides the opportunity to exchange ideas and 

experiences with others who are facing similar 

situations. Peer supports also provide parenting 

role models. 

The importance of peer supports for parents 

and prospective parents with disabilities may be 

even greater because of the limited information 

available on parenting with a disability. As one 

expectant mother with a disability said, “Perhaps 

what I have found the most helpful during my 

pregnancy has been the advice and input from 

other women with disabilities who have ‘been 

there, done that.’ I am 

fortunate to call many 

women with disabilities 

my colleagues and 

friends, and pregnancy 

has been a special time 

for me to reach out 

to those who are also 

mothers. Speaking with 

mothers with disabilities has helped me gain 

perspective on the experience of pregnancy. Even 

though physically our experiences are different, 

other women with disabilities have faced the 

same societal and attitudinal barriers that I am 

currently dealing with.”1109 Nearly all the parents 

who spoke with NCD mentioned the importance 

of peer supports, often noting that peers were 

more supportive than their families of their quest 

to become parents.

Most parents, and people who are considering 

becoming parents, do not have to look far to 

find positive role models. However, parents and 

potential parents with disabilities do not have the 

same opportunities. Researchers have found that 

“Perhaps what I have found the 

most helpful during my pregnancy 

has been the advice and input from 

other women with disabilities who 

have ‘been there, done that.’

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 207
parents who are blind or have low vision often try to 

parent according to “sighted ways of functioning” 

when they do not have role models with similar 

disabilities.1110 According to one mother, “The kind 

of support one can get from other mothers with 

visual impairments is not available ... in the sighted 

community.”1111 Research has found that parents 

with intellectual disabilities tend to be isolated and 

to have limited social networks.1112

Some disability organizations and have begun 

to create networks for parents with disabilities. 

For example, deaf parents are included in forums 

and presentations on families at national and 

worldwide organizations for people who are deaf 

or hard of hearing, including the World Federation 

of the Deaf, the National Association of the 

Deaf, Deaf Seniors of America, and Deaf Way.1113

Similarly, in 2000, the Committee on Parental 

Concerns and the National Federation of the Blind 

announced dual sponsorship of a blind parent 

mailing list that creates a forum for blind parents 

to share their experiences and offer peer-based 

support and information.1114 The National Multiple 

Sclerosis Society provides parenting information 

for its consumers.1115 TLG has developed a 

national parent-to-parent network as part of its 

national centers for parents with disabilities. The 

organization has also facilitated peer support 

groups for parents with diverse disabilities for 

30 years. Although some communities have 

found it difficult to establish groups for parents 

with intellectual disabilities, a particularly 

successful group established 11 years ago has 

led to the design of a training module—Designing 

Support Groups for Parents with Intellectual 

Disabilities—to support replication elsewhere.1116

Peer-professional staffing in programs that 

serve parents with disabilities—such as the 

programs at TLG—is an important vehicle for 

conveying the wisdom of peers and providing role 

models. Publications by parents with disabilities, 

including publications by parents who compile 

input from other parents, are another such 

vehicle.1117

Throughout the world, families headed by 

parents with intellectual disabilities tend to be 

less affluent and more isolated. As a result, 

the community connections and discretionary 

income necessary to create memory-making 

family trips, outings, and recreation are often 

limited or nonexistent. This situation has an 

effect on the quality of family life. Hanna Björg 

Sigurjónsdóttir of the University of Iceland 

designed and recently concluded a threeyear project that funded the creation of family 

peer groups facilitated by professionals in the 

community.1118 Sigurjónsdóttir summarized the 

project as follows: “The groups engaged in 

family days and weekends, the aim of which 

was for parents and children to get to know 

each other across families and for family 

members within each family to enjoy each 

other’s company, have fun together, and build up 

collective memories. The project is responsive 

to the families’ needs and makes it possible 

to focus on issues that they are dealing with 

currently in their lives as parents. The year 

culminated with a community family snow trip 

that provided a chance for activities, celebration, 

and fun. The parents and children were also 

able to invite members of their extended 

families or close family friends, to provide them 

with an opportunity to give something back to 

those who often provided their social support 

system.”1119 American sensibility tends to view 

such a program as a privilege, but other nations 

approach the idea of community integration and 

family support with creativity and an eye for 

208 National Council on Disability
[A]lthough the Internet provides 

wonderful opportunities to 

connect with other parents with 

disabilities ... 85 percent of adults 

without disabilities access the 

Internet compared with only 54 

percent of adults with disabilities ...

quality of life that is completely absent from our 

own approach. 

The Internet, especially social networking sites 

such as Facebook, has greatly assisted parents 

with disabilities who want to connect with their 

peers. Many of the parents who spoke with NCD 

use the Internet to connect with other parents 

with disabilities. But although the Internet provides 

wonderful opportunities to connect with other 

parents with disabilities, its usefulness has limits.

For instance, a 2010 survey conducted by the 

Kessler Foundation and the National Organization 

on Disability found that 85 percent of adults without 

disabilities access the 

Internet compared with 

only 54 percent of adults 

with disabilities—a 

gap of 31 percent.1120

For some parents with 

intellectual and other 

cognitive disabilities that 

affect reading ability, the 

Internet remains largely 

inaccessible. 

Despite increasing opportunities for peer 

support, many of the parents who spoke 

with NCD desire a more formal and organized 

network. For instance, Ken,1121 a father with HIV 

infection, hemophilia, and hepatitis C, told NCD 

that while Facebook has helped him connect, he 

wishes there were a more established group, 

similar to the national organization Parents, 

Families and Friends of Lesbians and Gays 

(commonly referred to as PFLAG). Ken also 

expressed interest in having a conference for 

parents with disabilities and their families. He 

said that he and his wife, a wheelchair user, 

are always looking for “concrete examples of 

how it’s been done.” Kathryn,1122 a mother who 

is a little person and a wheelchair user, wishes 

more peer supports and social gatherings were 

available for parents with disabilities and their 

families. Kathryn also believes that the lack of 

role models is a significant barrier for parents 

with disabilities. Lindsay,1123 a mother with 

physical disabilities and an acquired brain injury, 

has found very few role models for parents with 

acquired brain injuries.

Raising children can be very stressful. For 

parents with disabilities, limited peer supports 

often leave them discouraged and lacking 

necessary information. Peer support networks 

can be easily developed 

or expanded at a 

minimal cost and 

would be supportive 

for many parents. NCD 

recommends broader 

dissemination of national 

networks and Listservs, 

blogs, and so on. A 

primary national network 

should include peer staffing, provide peer-to-peer 

links, gather information, and provide links to 

other networking efforts, including those in state 

Web sites. This network should also maintain 

an accessible Web site and “warm line” (during 

business hours) with cross-disability, legal, and 

crisis intervention expertise. State sites should 

include peer staffing and peer-to-peer networking 

and should link to the national network. State 

sites could also maintain accessible Web sites 

and warm lines with cross-disability and crisis 

intervention expertise, and links to resources 

in their regions. Peer support groups could 

be located in independent living centers and 

programs that specialize in parents with disabilities 

or deafness. These local parent support groups 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 209
could provide the ongoing peer connections that 

are important for the alleviation of isolation in 

communities. Collaboration among national, state, 

and local services should be a priority, including 

training and dissemination of information.

Disability and Mental Health Service 

Providers 

Disability and mental health service providers 

play a significant role in the lives of many people 

with disabilities, but the services they offer 

typically do not address their needs as parents. 

In fact, research demonstrates that the majority 

of mental health agencies have no idea which of 

their clients are parents, and 80 percent have no 

policies for pregnant clients or clients who are 

parents.1124 Presumably, 

similar findings would 

be revealed with 

other disability service 

providers. Given the 

amount of time parents 

with disabilities spend with service providers, 

it is clear that their role as parents must be 

acknowledged and supported.

Mental Health Service Providers

As noted earlier in this report, parents with 

psychiatric disabilities lose custody of their 

children at the highest rate of any disability 

community: 70 percent to 80 percent. The 

National Co-morbidity Study of 1990–92 found 

that more than 44 million Americans (one out of 

every four people) have a mental illness, with 

65 percent of the women being mothers and 

52 percent of the men being fathers.1125 Such 

high rates of parenting mean that the issue of 

custody loss is affecting a significant portion of 

the psychiatric disability community. In 2006, 

Park, Solomon, and Mandell conducted the 

largest study ever done comparing Medicaideligible mothers with and without claims 

for psychiatric services to examine their 

involvement with the child protective service 

system in Philadelphia.1126 The authors concluded 

that the behavioral health systems and the child 

protective systems are gateways into each 

other’s services.1127 Viewed this way, the failure 

to help such a large portion of the psychiatric 

disability community retain intact families 

represents a failure of our community integration 

ideals. The synergistic dynamic between mental 

health and loss of custody requires attention.1128

The literature generally agrees that the key to 

addressing this problem is to provide services 

around parenting before 

any involvement with the 

child welfare system. The 

Invisible Children’s Project 

of the National Mental 

Health Association (now 

Mental Health America) generated best practices 

in working with parents. These include the need for 

family-focused case management that help parents 

with finances and access to affordable housing; 

planning for emergency and nonemergency 

child care; referral to parent support groups and 

parenting classes; referral to resources for the 

children; referral to parent-friendly medication 

counseling and treatment services; vocational 

training; and crisis financial aid. These findings—

combined with imperatives related to recoveryoriented services and the availability of evidencebased practices for provision of mental health 

services and supports—contribute to the urgency 

to address this issue now.

In addition, strong potential exists for 

collaboration between disability-community-

[T]he behavioral health systems 

and the child protective systems are 

gateways into each other’s services

210 National Council on Disability
based services and providers of infant mental 

health services. Spearheaded by ZERO to 

THREE, a national nonprofit organization that 

informs, trains, and supports professionals, 

policymakers, and parents in their efforts to 

improve the lives of infants and toddlers, infant 

mental health is a rapidly growing specialty that 

offers extremely early home-based preventive 

intervention, often beginning during pregnancy 

or at birth. Infant mental health clinicians typically 

work with parents and their infants and toddlers 

to support secure attachment relationships 

between parent and child. Developmental 

screening and guidance are usually included. 

Maternal depression 

and its impact on infantparent relationships 

and interaction is a 

particular focus of 

these specialists; it is 

critical to address this 

promptly to prevent longterm negative effects 

on children. 

Depression is a 

significant issue, not just among parents with 

psychiatric disabilities but in women with other 

disabilities. Studies have shown that women with 

severe mobility disabilities are more than six times 

more likely to experience depression than women 

without disability.1129 Professionals often conflate 

the effects of depression with the disability of 

mothers, which undermines the appropriateness 

of services and the evaluation of capability. 

Intellectual Disabilities Service 

Providers

With a removal rate second only to that in 

the psychiatric community, this disability 

community loses children at a rate of 40 percent 

to 80 percent. According to the President’s 

Committee on Intellectual Disability, “It is 

estimated that between 7 and 8 million Americans 

of all ages, or 3 percent of the general population, 

experience intellectual disabilities.”1130 The 

1.5 million parents with intellectual disabilities 

represent 2.3 percent of all parents with children 

under age 18.1131

Little focus has been directed at providing 

parenting support and services as part of general 

support for people with intellectual disabilities 

in the community. In 2000, Congress passed 

the Developmental Disabilities Assistance and 

Bill of Rights Act.1132 An 

extensive 12-section 

chapter titled “Family 

Supports” contains 

not one mention of 

parents with intellectual 

disabilities.1133

State-level 

implementation of 

services to people with 

intellectual disabilities 

varies greatly. Parenting support is often not on 

the roster of services and, if it is provided, the 

model is left to the discretion of the agency. 

For example, in California the Lanterman Act 

of 1965 guarantees community integration 

services to people with disabilities; the mandate 

is implemented via 21 regional centers that 

serve approximately 250,000 people.1134 Some 

centers, such as the East Bay Regional Center, 

list parenting training as a service and contract 

with at least one infant mental health agency to 

provide parenting support.1135 Others, such as the 

San Diego Regional Center, do not list parenting 

support as a service at all.1136 It is common in 

In 2000, Congress passed the 

Developmental Disabilities 

Assistance and Bill of Rights Act

xxiii

An extensive 12-section chapter titled 

“Family Supports” contains not one 

mention of parents with intellectual 

disabilities

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 211
the state system to rely on unsophisticated 

independent living skills workers to provide 

“training.”1137

Parents who do not have adequate supports 

are at much higher risk of losing custody or rights 

to their children. This issue arises upon entry into 

the child welfare system, too: When case plans 

are designed, the child welfare agency typically 

flounders as it attempts to find evaluation, 

assessment, and intervention providers who are 

familiar with people with intellectual disabilities, 

and the services designed for people with 

intellectual disabilities are typically not focused 

on parenting. 

The Arc notes that there “is a great for need 

community service agencies to create and 

provide individualized services based on each 

family’s needs.”1138 McConnell, Llewellyn, and 

Bye surveyed service providers and identified 

four principles associated with effective services 

to parents with intellectual and developmental 

disabilities:

■ Services need to be responsive to the 

parents’ individual needs and focus on the 

whole family to ensure that interests of both 

parents and children are served.

■ Services must include long-term, ongoing 

supports, because the needs of children 

change and parenting skills must change as 

children mature. 

■ Services must consider the special learning 

needs of the parent. Learning must occur in 

the home, be repetitive, use demonstration, 

and use resources that require little or no 

reading.

■ Services must help parents become part of 

their community.1139

Service Providers for People with 

Physical Disabilities, Blindness, or 

Deafness

Organized government support is scarce for 

people who have a physical disability or who 

are blind or deaf. Centers for Independent 

Living (CILs) are “grassroots, advocacydriven organizations run by and for people 

with disabilities. They focus on civil rights, the 

independent living philosophy, and inclusion. 

All Centers provide individual and systems 

advocacy, information and referral, peer support, 

and independent living skills training.”1140

CILs are funded under Title VII, Part C, of the 

Rehabilitation Act of 1973, as amended, and exist 

in every state. 

CILs are a crucial support for many 

people with disabilities by providing four core 

services: (1) individual and systems advocacy; 

(2) information and referral; (3) peer support; and 

(4) independent living skills training.1141 CILs have 

the potential, with training, to support parents 

with disabilities, especially to advocate regarding 

transportation, housing, financial advocacy, and 

assistive technology issues, and to offer parent 

support groups.

Rehabilitation centers rarely provide parenting 

skills training, instead focusing on self-care skills 

training. The National Federation of the Blind has 

a Committee on Blind Parents with a very active 

Listserv, and the Hadley School for the Blind offers 

a series of parenting classes as correspondence 

courses to people all over the country. In general, 

though, schools for the blind and the deaf do not 

focus on parenting skills in their curricula and do 

not offer parenting training to their consumer 

communities at large.1142 Perhaps existing 

parenting education courses offered at hospitals 

212 National Council on Disability
and by local agencies could be modified to address 

the needs of blind parents, who tend to learn the 

most from other blind parents.1143

Parents with physical disabilities, blindness, 

or deafness may receive services from state 

agencies, such as state vocational rehabilitation 

agencies and agencies for the blind and 

deaf. These agencies must be aware of their 

consumers’ roles as parents and, where possible, 

provide services that benefit the entire family. 

Further, these agencies must gather data on 

parents with disabilities.

Early Intervention and Prevention

Early intervention and prevention programs 

have the potential to provide significant support 

to parents with disabilities and their families. 

Federal legislation mandates family-centered early 

intervention (EI) services for infants and toddlers 

(age zero to three) with established diagnoses of 

developmental delay.1144 Some states also serve 

infants and toddlers who are deemed to be at 

risk for developmental delays.1145 Risk factors may 

be physical (e.g., low birth weight or exposure to 

infectious disease) and contextual (e.g., living in 

poverty or having a parent who is compromised 

by illness).1146 Research demonstrates that early 

intervention and other prevention model programs 

have positive effects on children, particularly with 

regard to cognitive and language outcomes.1147

Programs that focus on parental participation 

appear to be more effective than those that 

minimize or disregard the role of parents.1148

Head Start (HS) is the largest provider 

of early childhood education in the United 

States.1149 Established more than 30 years ago, it 

exemplifies the whole-child perspective of familycentered interventions, working toward wellness 

for all families.1150 Head Start is a multifaceted 

program that provides child care, preschool 

education, health and social services, disability 

services for children, and parent involvement 

opportunities to low-income families.1151

Although nationally Head Start does not 

identify parents with disabilities in its system, it 

plays a critical role in the lives of many parents 

with disabilities and their families. According 

to a 1997 survey, 85 percent of Head Start 

programs in a six-state region reported serving 

parents with disabilities.1152 Thus, “HS staff have 

consistent, frequent contact with families with 

disabilities and may be influential in providing 

social support, referrals, [and] information, and 

modeling appropriate interaction styles with 

children.”1153 The survey revealed that these Head 

Start programs provided the following services 

to parents with disabilities: 85 percent provided 

or made referrals to community agencies; 

78 percent provided educational information 

in different ways; 76 percent provided social 

support; 48 percent adapted materials; and 

18 percent used other strategies (e.g., increased 

access to classroom and used interpreters).1154

The same study identified a significant need for 

the development of policies, more expertise, and 

training.

Programs such as Head Start have great 

potential to support parents with disabilities. For 

example, parents with psychiatric disabilities 

often need strong natural support networks; 

Head Start staff could play a critical role in 

offering friendship and support, information, and 

instruction in parenting skills to these families.1155

Staff could also play a role in enabling parents 

with intellectual disabilities to nurture and care 

for their children in the most effective ways.1156

Further, “Head Start staff can play critical roles 

as advocates for parents in their caretaking 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 213
roles by (1) supporting parents as the primary 

spokespersons for themselves, (2) providing 

child development and parent education classes, 

(3) reinforcing parenting skills already learned, 

(4) linking the parents to pertinent services such 

as assistive technology, and (5) providing adaptive 

equipment that facilitates and eases caretaking of 

children.”1157 Although Head Start is expected to 

have access to assistive technology and adaptive 

equipment for children with disabilities, the 

system has not addressed the needs of parents 

with disabilities. This is a crucial area for training 

and the expansion of resources to serve parents 

with disabilities and their children. 

Early Head Start (EHS) potentially can play 

an even greater role in supporting parents with 

disabilities and their children than Head Start, 

because it offers home-based preventive and 

supportive services beginning in pregnancy 

and continuing until the child is three years 

old, as well as centers for infants and toddlers. 

To maintain continuity of services, many 

organizations offer both Early Head Start and 

Head Start. Both programs are available across 

the country, serve very low-income families, and 

are expected to implement ADA requirements. 

Both are required to serve at least 10 percent 

children with disabilities, and both could use 

more expertise regarding parents with disabilities 

and their families. As part of its new national 

center, TLG offers training to the national Early 

Head Start system on parents with disabilities 

and their children. The organization has created a 

model Early Head Start that focuses on families 

with disabilities in parent or child.

Each Early Head Start or Head Start develops 

its own criteria for enrollment, but national 

priorities include very low income, SSI or other 

public assistance, homelessness, or foster 

care.1158 Children of parents with disabilities may 

have disabilities of their own and thus may be 

prioritized to meet the 10 percent requirement 

for enrollment of children with disabilities in 

each program.1159 Children who do not qualify 

as having a disability may, in some locations, 

gain priority for enrollment because of a 

parent’s disability; however, enrollment based 

on parental disability is not guaranteed.1160 For 

example, Kathryn’s1161 daughter qualified for early 

intervention and therefore EHS/HS because she 

was born premature, not because of her parents’ 

disabilities (both are little people and wheelchair 

users). Kathryn believes that eligibility should be 

“family based,” meaning that it should include 

parental disability.

Early intervention and other prevention model 

programs appear to have the potential to fully 

accommodate parents with disabilities. “For 

example, the program’s traditional flexibility 

and accommodation is well suited to meeting 

the needs of families with disabled parents.”1162

Furthermore, EHS/HS already provides many 

of the components necessary to serve parents 

with disabilities: outreach networks, access 

to educational specialists, individually tailored 

educational plans, and close ties to a range of 

social services.1163 In addition, EHS/HS’s target 

population—children and families in poverty—is 

similar in many ways to families in which a parent 

has a disability: “Both groups are parenting in 

compromised circumstances that often include 

low-income, unsafe housing, unemployment 

or underemployment, and inadequate social 

networks.”1164 Efforts must be made to ensure 

that parents with disabilities and their children 

are considered for services and that the system 

provides training and resources to meet their 

needs. 

214 National Council on Disability
Protection and Advocacy System

People with disabilities have a long-standing 

history of experiencing discrimination and 

segregation. To combat this discrimination, P&A 

agencies are federally mandated to provide legal 

representation and advocacy on behalf of people 

with disabilities.1165 P&As, which “collectively, are 

the largest providers of legally based advocacy 

services to people with disabilities in the United 

States,” provide their services “through a variety 

of vehicles: individual representation; education of 

policy makers; advocacy for groups; information 

and referral services; rights education; and selfadvocacy training.”1166 “The fundamental mission 

of the P&A System is to respond to allegations 

of abuse and neglect and other violations of 

the rights of persons with disabilities.”1167 P&As 

achieve their objectives by “pursuing legal, 

administrative, and other appropriate remedies 

under all appropriate Federal, state and local 

laws.”1168 There are 57 P&As—one in each state 

and territory, and a Native American P&A.1169

Parents with disabilities that are involved with 

the child welfare or family law systems, often face 

insurmountable barriers to retaining effective and 

affordable legal representation. The majority of 

P&As do not represent parents with disabilities in 

termination or custody disputes. While they have 

been instrumental in advocating for legislative 

changes to child custody law and the provision 

of adaptive baby care equipment in California,1170

they rarely accept child welfare or child custody 

cases. The National Disability Rights Network, 

the umbrella organization for state P&A agencies, 

lists criminal justice and juvenile justice cases as 

issues for which it will provide services, but not 

family, probate, or child welfare cases.1171 This is 

troubling, because there is no right to counsel in 

the latter type of cases. In a national study of 102 

parents with disabilities who were experiencing 

child welfare or child custody difficulties, only 

24.5 percent contacted P&A for help; most of 

those who did not contact P&A said they were 

unaware of the service.1172 Of those who did 

contact P&A, none received any assistance.1173 The 

P&As’ hesitation probably reflects the fact that 

the need is so great—the agencies might believe 

that they would drown in a flood of cases if they 

began handling child welfare and child custody 

cases. However, a few P&As have begun to make 

parenting rights a priority, and it is hoped that 

more will follow suit.1174

Given the P&As’ extensive experience 

representing people with disabilities, a stronger 

collaboration between P&As and the attorneys 

who represent parents in termination and custody 

proceedings would undoubtedly generate more 

positive results for these parents.1175 P&As must 

make parenting rights a priority.

Conclusion

Regardless of whether or not they have a 

disability, all parents need supports, both formal 

and informal, to help them in parenting. And yet, 

interdependent parenting practiced by parents 

with disabilities is perceived as inadequate. 

With proper supports—such as PAS, housing, 

transportation, benefits, health care, peer 

support, early intervention and prevention, P&As, 

and CILs—most parents with disabilities and their 

families will have greater opportunity to live and 

grow together. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 215
216 National Council on Disability
Programs that serve the needs of 

parents with disabilities are scarce. 

Nevertheless, despite limited funding 

and little national attention given to parents 

with disabilities and their families, a number 

of programs and support services have begun 

to emerge. This chapter highlights several 

of these programs. Collectively, they show 

promise, long-term sustainable impact, and 

the potential for replication. The various levels 

of support they offer—from parent groups to 

weekly home visits to residential—represent 

the spectrum of community services needed 

to address diverse family situations. Generally, 

the programs highlighted in this report are 

small, local programs that are part of larger 

disability services organizations. For the most 

part, they provide services to parents with a 

certain disability (e.g., intellectual disabilities 

or psychiatric disabilities but not both). Despite 

their small size and limited focus, these 

programs show the enormous potential for 

serving parents with disabilities and their 

families. With more funding, programs like 

these can grow and develop nationwide to 

serve a currently underserved segment of the 

American people: parents with disabilities and 

their families. 

Through the Looking Glass, Berkeley, 

California

Founded in 1982, in Berkeley, California, Through 

the Looking Glass is a nationally recognized 

center that has pioneered research, training, and 

services for families in which a child, parent, or 

grandparent has a disability. For nearly 10 years 

before its establishment, TLG founders had 

provided disability-culture-based counseling 

services to couples and families with older 

children in the early independent living movement 

at the Berkeley Center for Independent Living.1176

TLG plays a central role in the national 

disability community, networking and providing 

resources, training, and technical assistance 

regarding parents with disabilities and their 

children. It has helped identify unmet needs 

and issues that can be pursued in research and 

clinical services. TLG’s national networking role 

evolved through the 1980s; beginning in 1993, it 

led to the establishment of other national centers 

for parents with disabilities and their families. 

These centers have conducted research and 

developed legal expertise, and have provided 

dissemination, professional training, technical 

assistance, publications, two international 

conferences, and a parent-to-parent network 

Chapter 14.  Promising Practices to Preve

Unnecessary Removal and Loss of 

Children

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 217
for parents with disabilities.1177 Currently, TLG’s 

National Center for Parents with Disabilities is 

directing an NIDRR-funded project: Families with 

Disabilities Through the Life Cycle: Disability 

Culture Perspectives. The many subprojects 

will include national training for the Early Head 

Start and Independent Living systems regarding 

parents with disabilities and their children. 

Since its inception, TLG has provided primarily 

home-based infant mental health care, family 

support, case management, early intervention 

or developmental services, and disability 

resources to families in which parents or children 

have diverse disabilities. It has also conducted 

numerous research and demonstration projects 

focused on parents with disabilities and their 

children primarily funded by NIDRR.1178 Staff 

includes social workers, marriage and family 

therapists, psychologists, occupational and 

speech therapists, developmental specialists, 

rehabilitation counselors, nurses, childbirth 

educators, doulas, early childhood educators, 

attorneys, and researchers. Nearly 80 percent of 

the culturally and linguistically diverse staff has 

personal or family disability experience.

In the mid-1980s, TLG began providing 

alternative assessments when parents with 

disabilities were involved with child protective 

services. According to its founders, “It was 

startling to discover the degree of pathologizing 

and the lack of disability expertise in child 

protection evaluation practice.”1179 One adapted 

parenting assessment is the Adapted Baby 

Care Assessment for Parents with Physical 

Limitations or Disabilities, a tool developed by 

occupational therapists and infant mental health 

specialists at TLG. This assessment involves 

multiple days of observation of the parent caring 

for the child in the home and on outings into the 

community. The occupational therapist assesses 

the parent’s baby and child care abilities in all 

areas of care. Through this process, contextual 

barriers and helpful strategies are identified 

that would foster the parenting care abilities. 

The final report documents the parent’s current 

functioning as well as strategies and adaptive 

equipment that could support and improve this 

functioning. In the assessment protocol, the 

parent will be provided with adaptive equipment 

and trained on the use of physical strategies, 

then reassessed.1180

A parallel assessment approach has been 

used when parents have vision, cognitive, or 

intellectual disabilities. All assessments include 

thorough observation of parent-child interaction 

over multiple days, interventions and adaptations, 

and more observation to assess their impact. The 

assessments have been used in child welfare, 

family court, and adoption situations.

TLG has been used by social service 

organizations, families and advocates to establish 

whether, with proper adaptive equipment and 

services, the removal of a child can be prevented. 

The volume of calls reporting discriminatory 

practices in custody litigation became so great 

that, in 2004, TLG established the Legal Program 

for Parents with Disabilities.1181 The program 

handles approximately 900 contacts a year with 

families or professionals involved in such cases 

throughout the United States.1182

In 2011, TLG served 400 families in the San 

Francisco East Bay, primarily during weekly or 

biweekly home visits, and its National Center 

provided training or technical assistance to 

almost 19,000 people.

TLG’s preventive early intervention has kept 

thousands of families from ever becoming 

involved in situations in which their parenting 

218 National Council on Disability
or custody is questioned. For example, TLG’s 

tailored services to parents with intellectual 

disabilities and their children have achieved a 

significantly lower rate of out-of-home placement 

(2 percent to 7 percent) of children of parents 

with intellectual disabilities since 1990, compared 

with the 40 percent to 80 percent national 

rate.1183

TLG’s current cross-disability services roster 

includes the following:1184

■ Pregnancy and birth support – Occupational 

therapy and childbirth educator staff with 

expertise in the unique health and attitudinal 

challenges facing mothers with disabilities 

during pregnancy and birth support and 

work with the expectant mother and her 

partner to prepare for both the physical 

experience of the birth and the practicalities 

that follow (including securing and learning 

to use adaptive baby care equipment).

■ Parent-child intervention – High-frequency, 

high-duration, home-based and relationshipbased interventions are tailored to 

families, blending infant mental health, 

family systems, and parenting education 

approaches with case management, 

developmental services, parenting 

adaptations, and disability resources.

■ Evaluation and assessment – Occupational 

therapists and mental health staff conduct 

parenting assessments of parents with all 

categories of disability using observationbased and home-based assessment of 

parent-child interaction and relationships, 

and piloting adaptations. 

■ Developmental assessment and early 

intervention – Home-based, relationshipbased services are provided for infants 

and young children with delays or disabilities 

and their parents, with and without 

disabilities.

■ Early Head Start for families with 

disabilities – Center- and home-based 

services are provided by early educators and 

therapists with support from TLG disability 

specialists in a universally designed center 

at the Ed Roberts Campus. This is the first 

EHS that specifically targets families with 

disability in parents or children.

■ Psychotherapy – Provided for individual 

children who have parents with disabilities 

or disabilities themselves, and for family 

units.

■ Support groups – Provided for mothers with 

intellectual disabilities or physical disabilities.

■ Playgroups – Provided for parents with 

intellectual disabilities and their children who 

have speech and language delays.

■ Legal services – Provided for parents with 

disabilities facing loss of child custody, as 

well as attorneys, social workers, and others 

involved in such cases.

■ Tutoring and academic scholarships – 

Provided for the children of parents with 

disabilities.

■ Consultation to early childhood centers – 

Mental health, developmental, and 

occupational therapists specializing in 

disability provide ongoing consultation to 

numerous centers in the community, many 

that include children whose parents have 

disabilities.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 219
■ Social media – These include a blog for 

parents with disabilities, a Facebook page, 

and a Twitter feed that streams national 

and international disability legal and policy 

developments, including those that involve 

parenting cases.

Thresholds Mothers’ Project, 

Chicago, Illinois

Founded in 1976, Thresholds Mothers’ Project 

was one of the nation’s first programs to serve 

parents with psychiatric disabilities and their 

families.1185 The project “seeks to stabilize and 

normalize the family unit and provide a social 

support network for its members.”1186 To support 

parents with disabilities, the Mothers’ Project 

includes three distinct programs: a teen parenting 

program, a therapeutic nursery, and a Projects 

for Assistance in Transition from Homelessness 

(PATH) program.1187

The teen parenting program generally receives 

referrals from the state child welfare agency. 

Participants are mothers who were abused and 

involved in child welfare as children; mothers are 

eligible for the program until they reach age 21. 

The teen parenting program includes transitional 

living and helps parents apply for and secure 

benefits, employment, and housing.1188

The therapeutic nursery is available for the 

children of parents enrolled in any Thresholds 

program, as well as community members. 

Children may attend until age five. The nursery 

is primarily funded by Chicago public schools, 

through EI funding.1189

The PATH program, which is funded by the 

Substance Abuse and Mental Health Services 

Administration (SAMHSA), serves mothers who 

are homeless or on the brink of homelessness. It 

is an outreach program aimed at helping mothers 

locate housing and other necessary supports.1190

The program’s Parenting Assessment Team 

provides ongoing evaluation of the parenting 

capacity of its members.1191

The Thresholds Mothers’ Project is nationally 

known. In 1993, Tipper Gore, President Clinton’s 

mental health policy advisor, recognized the 

program as one that “sets an example for the 

nation to follow” by teaching independent living 

and parenting skills. Through its programs,1192

Thresholds serves nearly 75 mothers and 90 

children annually.1193 According to Marc Fagan, 

associate director of child and adolescent 

services, the project’s overarching goal is 

“maintaining the bond between child and parent, 

even if the parent does not have custody.”1194

Fagan reports that children are very rarely 

removed from parents by child welfare while they 

are receiving supports from Thresholds.

Invisible Children’s Project, Orange 

County, New York

In 1993, the Mental Health Association (MHA) 

in Orange County, New York, began an effort 

to raise awareness of the needs of families in 

which a parent has a psychiatric disability.1195 The 

MHA developed the Invisible Children’s Project 

(ICP), a program that “aims to integrate essential 

services for these parents, to increase their 

ability to function as parents and assist them in 

creating a safe and nurturing environment for 

their children.”1196

The objective of ICP is to support parents with 

psychiatric disabilities in their parenting efforts 

and to keep the family together. Critical program 

components include family case management 

with 24-hour emergency services; affordable 

housing and financial assistance; respite care for 

parents; planning for parental hospitalization so 

220 National Council on Disability
children are not placed in foster care; advocacy 

on behalf of the child with schools, social 

services, and the courts; parent skills training; 

support groups for parents; vocational training; 

and supported education services (e.g., classes 

and mentoring).1197 Other program features 

include support during pregnancy and postpartum 

periods, art therapy with children, and cash for 

special requests (e.g., toys, camp, and birthday 

parties).1198

ICP receives its funding through a variety of 

funding streams, including local and state dollars 

from the Department of Mental Health, HHS, 

HUD, United Way, and private contributions.1199

Since its inception, ICP has served more 

than 175 people in New York. In an evaluation 

conducted by the New York Psychiatric Institute, 

more than 90 percent of the families served by 

ICP rated the overall quality of service as good or 

excellent and would recommend it to a friend.1200

The data demonstrated that the program is 

particularly effective in helping consumers obtain 

better housing and improve their parenting skills. 

Recent internal program evaluations reveal a 

notable decrease in parental hospitalization 

and an increase in the ability of participants 

to hold a job and get off public assistance. Of 

significant note is the decline in the number of 

children placed in foster care as a result of the 

project.1201 ICP is a nationally recognized, awardwinning, interagency program that the National 

Mental Health Association is helping to replicate 

nationwide.1202

Family Initiatives at Employment 

Options, Marlborough, 

Massachusetts

Family Initiatives, a program of the Employment 

Options clubhouse in Marlborough, 

Massachusetts, offers a continuum of four 

programs for custodial and noncustodial parents 

with psychiatric disabilities: Family Project, 

Family Options, Young Parents Support Service, 

and the Clubhouse Family Legal Support Project 

(CFLSP).1203

Family Project offers a variety of supports and 

services to custodial and noncustodial parents 

with psychiatric disabilities who are receiving 

care through the Massachusetts Department of 

Mental Health.1204 The project is an integral part 

of the clubhouse; through advocacy, the family 

generalist staff works with parents to rebuild 

relationships with their children and empower 

them to reestablish their identity as parents.1205

Some of the parents involved with the Family 

Project have lost contact with their children 

and require legal consultation. The project 

works closely with the Clubhouse Family Legal 

Support Project to help parents achieve their 

goals:

■ Parenting recovery supports and skill 

building – Staff and peers help parents 

increase their understanding of their 

children, improve their parenting skills, and 

build skills and resources to support their 

recovery.

■ Visitation support – Staff work with parents 

who do not have custody of their children 

to plan visits that will be developmentally 

appropriate, interactive, and pleasurable for 

parents and their children. Staff also provide 

supervised visitation and transportation to 

these visits.

■ Parent peer support group – Parents 

meet regularly to discuss the challenges 

of attending to their own well-being and 

recovery. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 221
■ Liaison with Clubhouse Family Legal 

Support Project – Staff facilitate contact 

and communication between parents and 

attorneys, in support of the parents’ efforts 

to gain visitation and custodial care.

■ Liaison with community – Staff and 

parents work together to facilitate a 

better understanding among the parent’s 

community, including schools, housing, 

public safety, child welfare, and religious/

community groups.1206

Family Options is a comprehensive program 

that provides strengths- and communitybased care designed to meet the needs of 

parents with psychiatric disabilities and their 

children.1207 The program offers family coaching, 

a wraparound team process, a 24-hour support 

line, a parent support group, and flexible funding 

to meet unique family and individual needs.1208

Referrals to Family Options come from both 

the child- and adult-focused service sectors, 

with the majority from child welfare.1209 The 

program is staffed by a director with extensive 

wraparound experience; three family coaches, 

each of whom works with a maximum of eight 

families at a time; a parent peer coordinator; 

and a consulting research and clinical 

psychologist.1210

Young Parents Support Services provides 

parent coaching and peer mentoring for young 

pregnant and parenting adults with psychiatric 

disabilities.1211

CFLSP offers legal advice and representation 

for parents who are trying to increase their 

contact with their children. The project teaches 

parents how to use their custodial rights and 

provides statewide training for attorneys on 

the legal issues facing parents with psychiatric 

disabilities.1212 CFLSP was established in 

1999 to help club members work toward 

rebuilding their families.1213 The project brought 

a family law practitioner with experience 

representing low-income clients to join the 

Mental Health Legal Advisors Committee 

(MHLAC) and Employment Options as a fulltime project attorney. Working with MHLAC and 

Employment Options, the attorney provides legal 

representation to clubhouse members who are 

at risk of losing custody and all contact with their 

children.1214

The project was launched by an attorney who 

had discovered that these cases were not being 

taken by legal service agencies, pro se clinics, 

pro bono attorneys, or private attorneys.1215

Legal service agencies in Massachusetts were 

unable to provide representation because of 

limited resources and were therefore forced 

to decrease their family law staff and caseload 

to cover only matters that involve domestic 

violence. For this reason, MHLAC was “the 

only game in town if you were a male.”1216 In 

attempting to refer these cases elsewhere, 

legal services agencies discovered that other 

agencies were either reluctant or ill-equipped to 

handle cases involving parents with psychiatric 

disabilities. Further, legal service agencies had 

tried to obtain representation for parents with 

psychiatric disabilities through pro se clinics 

and private bar referrals. Unfortunately, pro se 

clinics were not useful for clients with psychiatric 

disabilities in family law matters. Moreover, most 

low-income parents with psychiatric disabilities 

cannot afford private attorneys, and thus rarely 

receive representation from the private bar.1217

Even pro bono attorneys were reluctant to take 

these cases, because they “lack specialized 

training in mental health law, clinical knowledge, 

222 National Council on Disability
and the parenting support services available in 

Massachusetts.”1218

Positive Parenting Resource Center 

at United Arc of Franklin and 

Hampshire Counties, Greenfield, 

Massachusetts

The Positive Parenting Resource Center, which 

was established through an innovation grant 

from the Massachusetts Department of Mental 

Retardation, provides services and support to 

families headed by parents with intellectual or 

developmental disabilities.1219 The center provides 

the following services:

■ Individualized parent support – Includes 

home-based parent education, parent 

skills training, case management, service 

advocacy and family support. 

■ Parent education and support groups – 

Sessions focus on child development, 

parent/child communication, health and 

wellness, family literacy, basic household 

and financial stability, positive discipline 

and limit setting, safety factors, prevention 

of abuse and neglect, and access of 

community resources. Most groups have 

a target parent population; for example, 

parents with young children or parents of 

teens. Groups have educational themes and 

draw from a primary curriculum such as The 

Nurturing Parent or The Family Game. 

■ Supervised visitation – Available to families 

referred by child protective services whose 

children are in foster care. 

■ Intensive structured supported family 

living – Available to families referred by child 

protective services who need a broadly 

supportive environment for reunification 

of parents and children or to attain stability 

in family life. The United Arc owns an 

apartment building with five apartments 

available for families and two adjacent 

apartments that house staff offices, group 

meeting space, and living quarters for an 

onsite supportive neighbor. 

■ Mentoring support – Family Friends 

volunteers are matched with families to 

provide additional support and guidance to 

both children and parents. 

■ Grandparent support – Networking, support 

groups, and individualized home visits are 

available to grandparents who have primary 

responsibility for raising a grandchild.1220

The Positive Parenting Resource Center is 

funded through a variety of sources, including 

state funding from the Department of Children 

and Families, Children’s Trust Fund, Community 

Foundation of Western Massachusetts, and private 

grants. Any family in which the parent is identified 

as having an intellectual or developmental 

disability may be referred to the center.1221

Ashbury House, San Francisco, 

California

Ashbury House is a residential treatment 

program in a social rehabilitation model, serving 

mothers who have mental health treatment 

needs, frequently with co-occurring substance 

abuse treatment needs. Ashbury House serves 

homeless women who have lost custody or 

are at risk of losing custody of their children 

owing to their psychiatric disability and who 

need comprehensive mental health services 

and parenting education to maintain or regain 

custody. Onsite day treatment includes parenting 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 223
education, individual and group counseling, crisis 

intervention, peer support, activities of daily 

living, medication support, ambulatory medical 

support by a nurse practitioner, and referrals to 

social services, vocational rehabilitation, housing 

and community treatment. Ashbury House is 

wheelchair accessible.1222

When Ashbury House opened in 1995, it 

was one of the first programs of its kind in 

the country. Before it opened, mothers were 

generally not allowed to keep their children with 

them while in a residential treatment program, 

and if a mother needed that level of mental 

health treatment, she was forced to give up 

her children. Ashbury is a yearlong program in 

which clients learn to manage their disability and 

improve their life skills; they also learn parenting 

skills, well-baby care, and how to identify and 

develop strategies for times when their mental 

illness may negatively affect their parenting.1223

Promising Models for Funding and 

Structure

This section examines two additional models 

for funding and structure of successful national 

programs that serve parents with disabilities and 

their children.

Family Support 360 Projects

The Family Support 360 initiative is an example 

of how state parenting support centers could 

be funded and developed nationally. The specific 

project discussed, Green Mountain 360, is an 

example of a promising practice.

Through the Family Support 360 (FS 360) 

initiative, the Administration on Intellectual and 

Developmental Disabilities (AIDD)—a program of 

the Administration for Community Living under 

HHS—provided “planning and implementation 

grant opportunities to create one-stop centers to 

assist the families of individuals with what they 

phrase as developmental disabilities. In fiscal 

year 2004, 21 entities were funded for five years 

to implement Family Support 360 Centers. They 

were required to be designated as the lead entity 

for their State/Territory by their Governor and 

to work in partnership with the developmental 

disability (DD) network (DD Council, Protection 

and Advocacy System, and University Center 

on Developmental Disability), family members, 

policymakers, and others in their State/Territory. 

They identified and geared their services to 

one un-served population and assisted them in 

locating and navigating public human services 

agencies, and connecting to private community 

organizations.”1224 These projects were to be 

defined by their holistic approach to family units 

and were to be family-centered and familydirected to the greatest possible extent. They 

included assessment of the family unit and 

creation with the family of a family service plan 

that describes the services the family might 

access and how to secure them. Families 

were assisted in securing and using a range of 

services, such as health care, child care, early 

intervention, education, employment, marriage 

education, financial education, transportation, 

housing, respite care, and assistance in 

maintaining parental rights. Staff were available 

to help if the family hit a barrier in the process.1225

One of the initial grantees focused on 

families in which a parent had a developmental 

disability: Green Mountain 360 in Vermont.1226

Green Mountain provided peer navigators with 

expertise in disability and human services to 

help participants identify and use preventive and 

reunification services. Green Mountain worked 

to ensure that the human services system 

224 National Council on Disability
developed and maintained equitable statewide 

capacity to deliver collaborative, flexible, 

coordinated supports that were safe for families 

who have a parent with a disability; helped 

parents with disabilities retain custody of their 

children with appropriate supports; and provided 

communication support to help parents make 

relevant facts and wishes known to the court. 

The model was successful: In the five years the 

grant ran, Green Mountain serves 750 families. 

The rate of removal of minor children was less 

than 5 percent.1227

None of the current 360 projects fund projects 

focused on serving families in which parents 

have disabilities. However, portions of the Green 

Mountain model have been funded by state 

legislation to continue acting as a triage point 

for the intersection of parents with intellectual 

disabilities and their families and human services 

agencies in the state.1228 Sage Haven Center, 

LLC, in Fairfax, Vermont, continues to provide 

accommodated parenting assessments and 

evaluations in the context of child welfare cases, 

with regular recommendations for the use of 

peer navigators.1229

Sage Haven is a private mental health 

counseling practice specializing in intellectual 

and developmental disabilities.1230 Services 

include individual, group, and family counseling 

by therapists skilled in treating individuals with 

intellectual or developmental disabilities and 

co-occurring emotional or behavioral disorders; 

consultation; training; and competence-based 

parenting assessments(C-BPAs). Sage Haven 

subcontracts a multidisciplinary team (the 

Vermont Parent Assessment Team) of doctoral 

and master’s level psychologists, social workers, 

counselors, and other qualified professionals 

(with more than 60 years of combined 

experience) to conduct the assessments. C-BPAs 

evaluate parents’ ability to nurture, protect, and 

meet the changing needs of their children. Family 

assessment specialists work in partnership with 

parents and service providers to assess individual 

parenting needs, while ensuring that parents’ 

rights are respected and children’s welfare is 

protected. The information gathered in C-BPAs 

helps determine the support needed for a parent 

to be successful and may assist with custody 

decisions. To conduct C-BPAs, family assessment 

specialists (1) use nationally recognized tools 

to evaluate parents’ skills and the factors that 

have been found to affect parenting; (2) observe 

parent-child interactions in home and community 

settings; (3) interview parents to gather social 

histories and determine the need for support; 

(4) interview service and support providers; and 

(5) review records. They take cultural context and 

diversity into account and use current clinical and 

research evidence to inform their reports and 

ensure best practice.1231

Another successful program is the Vermont 

Communication Support Project (VCSP), 

which serves people with disability-related 

communication barriers that prevent them from 

fully participating in civil court and administrative 

proceedings, including those involving parental 

rights and responsibilities, Child in Need of 

Services (CHINS), and TPR.1232 A communication 

support specialist is trained to understand 

the communication needs of people with 

learning disabilities, traumatic brain injuries, 

developmental disabilities, autism spectrum 

disorders, mental illness, aphasia, and other 

stroke-related conditions. VCSP began very 

informally nearly 15 years ago when a public 

defender in Chittenden County contacted the 

Disability Law Project to brainstorm about help 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 225
for a client with intellectual disabilities who had 

difficulty understanding and communicating 

in the confusing environment of a court 

proceeding.1233 The Disability Law Project 

connected the attorney with a former special 

educator who was able to help prepare the 

client and simplify the language and concepts 

during the proceedings. The proceedings went 

smoothly for all, the court clerk began calling 

the Disability Law Project for help with other 

cases, and several other retired special educators 

stepped up to help. In 1999, a grant to the 

Defender General’s Office, combined with a small 

memorial fund at the Vermont Parent Information 

Center, provided funds to develop a training 

curriculum for communication support specialists 

and staff to administer the project. VCSP was 

initially housed in the Defender General’s Office. 

For a while, VCSP operated as an independent 

project funded by the Vermont Developmental 

Disabilities Council; eventually it moved to the 

University of Vermont’s Center on Disability 

and Community Inclusion. It has been a project 

of Disability Rights Vermont since June 2008. 

VCSP has received funding at various times from 

DOJ, the Vermont Developmental Disabilities 

Council, and the state of Vermont. Currently, it is 

supported by grants from DOJ and the state. 

The communication support specialists 

are independent contractors paid by courts 

and administrative agencies as a necessary 

accommodation under the ADA. Preparation time 

with an attorney is paid for by the attorney.1234

The role of the specialist is to assist people with 

cognitive disabilities who might otherwise be 

confused by proceedings or who have difficulty 

expressing themselves by preparing them for 

proceedings, simplifying language and abstract 

concepts, checking for understanding, using 

alternative means of communication, and alerting 

the judge or hearing officer if the client does not 

understand or needs a break. The communication 

support specialist’s role is that of neutral 

communication facilitator, analogous to a sign 

language interpreter for the deaf.

Between January 1, 2008, and June 30, 2011, 

VCSP received 253 requests for services; 206 

became active cases, and 47 did not qualify 

for services or were unable to document their 

disability for a variety of reasons. Many, if not 

most, of these cases involved numerous hearings 

or meetings. VCSP was involved in at least 497 

hearings, meetings, and mediations between 

January 1, 2008, and June 30, 2011.1235

Healthy Start, Australia

The idea of a national system of interdisciplinary 

organizations to build capacity and directly 

provide support to parents with disabilities 

is not unprecedented. International research 

demonstrating limited system capacity in 

Australia to support parents with intellectual 

disabilities triggered the development of a 

national—and replicable—response. 

The Australian government funded a capacitybuilding model known as Healthy Start: A 

National Strategy for Children of Parents with 

Intellectual Disabilities. Healthy Start is an Early 

Childhood–Invest to Grow initiative, funded 

under the Stronger Families and Communities 

Strategy.1236 “Healthy Start is an organizationallevel intervention to reduce risk and promote 

a healthy start to life for children of parents 

with intellectual disabilities. The focus of the 

intervention is on the limited capacity of the 

service system to deliver evidence-based 

practice to these parents. Healthy Start aims 

to build system capacity by developing local 

226 National Council on Disability
area networks developed and led by local 

champions, implementing a national technologybased network, and by actively disseminating 

knowledge and innovation.”1237 The components 

of Healthy Start are adaptation to community 

context, peer networking, access to knowledge 

and innovation, leadership and managerial 

support, and building capacity.1238 The designers 

of the system note that “innovative, crossdisciplinary, and intersectoral practitioner 

networks are at the heart of this capacity-building 

model. These networks bridge the gap between 

research knowledge and practitioner knowledge 

as a basis for planning and coordinating local 

service development.”1239

So far, 69 learning hubs have been 

established, covering every Australian state 

and territory. The information-rich Web site is 

available to the participating local agencies 

and professionals. A graduate-level unit of 

study on parents with intellectual disabilities 

is open to those facilitating hubs, as well as 

two evidence-based parenting programs, 

involving workshop training of 464 practitioners 

throughout Australia.1240 “Local learning hubs 

are now implementing a range of innovative 

plans to build capacity to support parents with 

intellectual disabilities and their young children 

in their own local areas, bringing together 

knowledge from research with knowledge of 

local area needs.”1241

Conclusion

Throughout the United States, agencies 

have developed innovative, evidence-based 

programs that support parents with disabilities 

and the well-being of their children. Yet a gap still 

exists between the research on what needs to 

be provided to these families to support them, 

the excellent work of a few programs, and 

the vast number of families with no access to 

support. 

There is an urgent need for a national 

approach like the Healthy Start National Strategy 

in Australia. Further investigation is needed 

into how the United States could adopt a more 

sustained and robust version of the 360 project 

funding and development model, starting with 

demonstration project funding in 10–12 states. 

The development of collaborative projects and 

agencies that reflect the best of the promising 

practices highlighted here, with multidisciplinary 

and cross-disability features, is our best hope 

for creating capacity to meet the needs of this 

population of parents and their children in a 

consistent and comprehensive manner. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 227
228 National Council on Disability
”Law is an expression of the society in which it arises.”1242

State Legislation of Interest

To address the barriers people with disabilities 

face in creating and maintaining families, some 

states have modified their legislation affecting 

custody. The efforts of grassroots disability 

organizations in Idaho and Kansas have led to 

significant alterations in state statutes governing 

custody of children in dependency and family 

court proceedings.1243 California passed legislation 

that requires the state’s Medicaid program to 

include adaptive baby care equipment in the 

list of durable medical equipment it covers.1244

Other states have also addressed the disparities 

facing parents with disabilities and their families 

by amending their legislation, albeit not as 

comprehensively as Idaho or Kansas. These 

disability-specific legislative changes should be 

models for similar legislation at the state and 

federal level.

Idaho

The Idaho State Independent Living Council 

(SILC) undertook a groundbreaking effort to 

change legislation that was devastating the lives 

of parents with disabilities and their families. 

As a grassroots organization, the Idaho SILC 

gathers information on the issues most important 

to its consumers and includes these issues in 

its annual State Plan on Independent Living. In 

2000, many consumers reported a rising fear of 

unjustified removals of children from their parents 

with disabilities. Led by Kelly Buckland, the 

executive director of Idaho SILC at the time, the 

Fathers and Mothers Independently Living with 

their Youth (FAMILY) Committee was established 

to address this problem.1245

In collaboration with TLG and local legislators, 

the FAMILY Committee drafted legislation for 

introduction during the 2000 state legislative 

session. The legislation passed the Senate 

unanimously but was defeated in the House 

Health and Welfare Committee. The FAMILY 

Committee met over the summer of 2000 and 

made minor revisions to address the concerns of 

the Idaho Prosecutors Association. The legislation 

was reintroduction in 2001; again, the bills 

passed the Senate but failed in the House Health 

and Welfare Committee.1246

Following another round of revisions, draft 

legislation was sent to legislators, magistrates, 

and committee members for a final review 

before the 2002 legislative session began. 

Eventually, four successful bills were passed 

over the 2002 and 2003 legislative sessions, 

modifying every custody-related section of the 

Idaho Statutes.1247

Collectively, these bills addressed attitudinal 

bias; lack of knowledge of disability, adaptive 

Chapter 15.  Remedial State and Federal Legislati

of Interest

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 229
equipment, and services; problems in the 

production of good evidence and the challenge of 

bad evidence; and laws leading to discrimination 

by allowing the removal of a child without 

showing a nexus between the disability and 

detriment to the child. The bills made the 

following language additions and removals in the 

divorce, separation, and dependency statutes:

■ Added a nondiscrimination statement 

regarding parents with disabilities.1248

■ Defined “disability, supportive services, and 

adaptive equipment.”1249

■ Added a section that makes evidence 

relevant and admissible regarding the 

services and adaptive equipment available 

to enable parents with a disability to care for 

their children.1250

■ Added language requiring anyone who 

conducts a parenting evaluation to 

consider the use of adaptive equipment 

and supportive services for parents with 

disabilities and requiring the evaluator to 

have (or be assisted by someone who 

has) expertise in such equipment and 

services.1251

■ Removed references to disability as 

a factor to be considered in custody 

determinations.1252

■ Added a section requiring a written 

statement by the court should it decide that 

disability is a relevant factor in a custody 

determination.1253

Because of the FAMILY Committee’s efforts, 

statutes governing adoption and probate 

guardianships of children were also modified.1254

To date, two cases involving the new 

legislation have reached the appellate level.1255

In Doe v. Doe,

1256 the court was unable to 

reach the merits of the case because it 

determined that the new legislation was not to 

be applied retroactively. In Lieurance-Ross v. 

Ross,

1257 a father appealed the decision of a 

family court magistrate that he could not be 

awarded custody of his children because he 

had a general guardianship as a result of strokeimpaired cognitive functioning. In a decision that 

demonstrated what the court had learned from 

the new legislation, the conclusion included a 

discussion of adaptive parenting equipment and 

services and stated the following:

“[Because] a parent with a guardian is not 

precluded from seeking custody of his or 

her child, we see no reason to apply Section 32-717(2) differently in situations where 

a parent with a disability has a guardian 

from those situations where a parent with a 

disability does not have a guardian. In either 

scenario, the court is required to make findings regarding the effect the disability has 

on the parent’s ability to carry out parenting 

responsibilities and whether adaptive equipment or supportive services can compensate for those aspects of the disability that 

affect the parent’s ability to care for his or 

her child.”1258

Kansas 

Undoubtedly inspired by Idaho’s success, the 

State Independent Living Council of Kansas 

(SILCK) embarked on a process of protecting 

the rights of parents with disabilities and their 

families through legislative amendment.1259

Following the 2003 Kansas Disability Conference, 

at which numerous parents with disabilities 

shared stories of losing their parental rights, 

230 National Council on Disability
SILCK decided to pursue this injustice during the 

2004 legislative session. 

Over the previous seven years, the Judicial 

Council had been focused on revising the Kansas 

Code for Child in Need of Care (CINC). Although 

the council had not considered the issue of 

discrimination against parents with disabilities, 

SILCK secured technical assistance from Ella 

Callow, director of TLG’s legal program, and 

engaged members of the council to support the 

proposed changes. Nondiscriminatory language 

had not been included in the original bill, but 

testimony from SILCK to amend and add such 

language was supported by attorneys, Judicial 

Council members, and the state Judiciary 

Committee.1260

As a result of the timing of the CINC revision 

project, SILCK was able to introduce and pass 

effective remedial legislation for parents with 

disabilities and their families swiftly and without 

much revision. SB 230 passed during the 2005 

legislative session and went into effect in 

2006. This legislation included four significant 

safeguards for parents with disabilities in the new 

Chapter 38 of Article 22 “The Revised Kansas 

Code for Care of Children.” These safeguards 

addressed issues of attitudinal bias; lack of 

knowledge of adaptive equipment; problems 

in the production of good evidence and the 

challenge of bad evidence; and laws that led to 

discrimination by allowing the removal of a child 

without showing a link between the parent’s 

disability and detriment to the child.1261 The 

legislation added the following language:

■ A nondiscrimination statement regarding 

parents with disabilities that more fully 

encompassed them in the policy directive 

to protect the privacy and unity of the 

family.1262

■ A statement that the disability of a parent 

will not constitute a ground for finding the 

child dependent or for removing the child 

from the parent without a specific showing 

of a causal relationship between the 

disability and harm to the child.1263

■ A statement that the disability of a parent 

will not constitute a ground for terminating 

the parental rights of a parent with a 

disability without a specific showing of a 

causal relationship between the disability 

and harm to the child.1264

■ A mandate that custody determinations 

under the code will consider the availability 

and use of accommodations, specifically 

adaptive equipment and support services.1265

While more limited in scope (because it was 

part of a revision of one specific code—the 

dependency code), the Kansas legislation 

includes some significant protections for 

parents with disabilities. Because it requires 

that causation between harm to the child 

and the disability be established, the code 

principally necessitates the provision of proper 

services and the performance of adapted 

evaluations and assessments. These legislative 

changes set the stage for modification of 

other relevant Kansas codes, such as those 

affecting domestic relations, adoption, and 

guardianship.1266

California

Acknowledging the importance of adaptive baby 

care equipment for some parents with disabilities, 

California’s Protection and Advocacy system, in 

collaboration with TLG, sponsored AB 2152 in 

2000.1267 This legislation caused adaptive baby 

care equipment to be included in the list of 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 231
durable medical equipment covered by Medi-Cal 

(California’s Medicaid program). The legislation is 

groundbreaking because it expands references 

to “conditions that interfere with normal activity” 

to include those that interfere with the ability to 

parent; identifies such conditions as meeting the 

definition of significant disability and thus rendering 

services medically necessary; and expands the 

rights of Medi-Cal beneficiaries to include receiving 

adaptive parenting equipment within the definition 

of durable medical equipment.1268 The legislative 

language addresses the problem of the costprohibitive nature of some adaptive equipment. 

As yet, there has been no test case. There was 

a funding crisis at the time the legislation was 

passed that resulted in confusion as to whether 

the new legislation would be funded. However, 

recently the state government has indicated that 

the legislation can be acted upon.1269

Efforts by Other States

Other states have also amended legislation 

in an attempt to remediate the discrimination 

experienced by parents with disabilities and their 

families. For example, on July 12, 2011, Missouri 

Governor Jay Nixon signed into law HB604 and 

SB555, which strengthen the rights of parents with 

disabilities and their families.1270 These bills came 

on the heels of a recent case in which a couple 

lost custody of their daughter for 57 days because 

they were blind.1271 This legislation prohibits 

discrimination on the basis of disability “without a 

specific showing that there is a causal relationship 

between the disability or disease and a substantial 

and significant risk of harm to a child.” The 

legislation applies to termination of parental rights 

and custody as well as foster and adoptive parents. 

In 2009, Maryland passed legislation 

protecting the rights of parents with disabilities. 

HB 689/SB 613 prohibits discrimination on the 

basis of disability against parents, guardians, or 

caregivers who are involved in adoption, custody, 

or Children in Need of Assistance cases.1272

In 2007, Vermont changed its state law, which 

now includes language mandating that in child 

welfare, there should be an appropriate balance 

between protecting children and respecting the 

rights of a parent or guardian, including a parent 

or guardian with disabilities, and recognizes 

that people with a disability can be successful 

parents. The rules also include the possible use 

of adaptive equipment and supports. The Vermont 

state statute requires that the strengths and 

needs of parents with disabilities be considered 

in child welfare proceedings.1273 Specifically, 

Vermont State Code 52 § 4922(b) states:

“The rules shall strike an appropriate balance between protecting children and respecting the rights of a parent or guardian, 

including a parent or guardian with disabilities, and shall recognize that persons with 

a disability can be successful parents. The 

rules shall include the possible use of adaptive equipment and supports.”1274

Rhode Island eliminated disability language 

in its termination of parental rights statute in 

2000.1275

In 1997, Arkansas wrote the ADA into its child 

welfare statute. Pursuant to Ark. Code Ann. 

§ 9-27-341, a court may terminate parental rights 

only after it has found by clear and convincing 

evidence that “despite a meaningful effort ... to 

rehabilitate the parent and correct the conditions 

that caused removal, those conditions have 

not been remedied by the parent”; provided, 

however, that “the department shall make 

reasonable accommodations in accordance 

232 National Council on Disability
with the Americans with Disabilities Act...to 

parents with disabilities in order to allow them 

meaningful access to reunification and family 

preservation services.” 

Federal Legislation of Interest: Indian 

Child Welfare Act

On November 11, 1978, the Indian Child Welfare 

Act (ICWA) of 1978 was enacted.1276 Its purpose 

was to establish standards for the placement of 

Native American children in foster and adoptive 

homes and to prevent the breakup of Indian 

families. ICWA established minimum federal 

standards for the removal of Native American 

children from their families; required Native 

American children to be placed in foster or 

adoptive homes that reflect Native American 

culture; provided for assistance to tribes in the 

operation of child and family service programs; 

created exclusive tribal jurisdiction over all 

Native American child custody proceedings 

when requested by the tribe, parent, or Indian 

custodian; and granted preference to Native 

American family environments in adoptive or 

foster care placement.1277 Moreover, ICWA 

contains the strongest language in favor of family 

preservation. ICWA requires proof by clear and 

convincing evidence for any temporary foster 

care placement and proof beyond a reasonable 

doubt for termination of parental rights.1278

As noted by Callow, Buckland, and Jones:1279

“While the Indian Child Welfare Act (ICWA) 

is clearly not aimed at the disability community, the impetus for the ICWA arose from 

circumstances similar to those surrounding 

families with parents who are disabled. 

Both Native Americans and people with disabilities are historically oppressed minorities 

denied civil and human rights in this country. Both groups were systemically isolated 

from other sectors of society until midway 

through the last century. Both groups suffer 

extreme levels of poverty and little is understood about their cultures, leading to generalized stereotyping and discrimination. Most 

importantly, both groups have been subjected to involuntary sterilization programs and 

the massive removals of their children.”1280

Congress passed the act in response to 

the alarming rate at which Native nations were 

losing custody of their children;1281 indeed, 

testimony from the 1974 hearings before the 

Subcommittee on Indian Affairs of the Senate 

Committee on the Interior and Insular Affairs 

included evidence that 25 percent to 35 percent 

of Native children were being removed from 

their families.1282 The systemic removal of 

Native children was believed to be the result of 

misconceptions and stereotypes about poverty 

and about the child care practices of Native 

communities.1283

In passing ICWA, Congress specifically said:

“...that there is no resource that is more 

vital to the continued existence and integrity of Indian tribes than their children and 

that the United States has a direct interest, 

as trustee, in protecting Indian children who 

are members of or are eligible for membership in an Indian tribe; (4) that an alarmingly 

high percentage of Indian families are broken up by the removal, often unwarranted, 

of their children from them by nontribal 

public and private agencies and that an 

alarmingly high percentage of such children 

are placed in non-Indian foster and adoptive 

homes and institutions; and (5) that the 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 233
States, exercising their recognized jurisdiction over Indian child custody proceedings 

through administrative and judicial bodies, 

have often failed to recognize the essential 

tribal relations of Indian people and the cultural and social standards prevailing in Indian communities and families.”1284

The dearth of information about parenting in 

the Native American culture is comparable to the 

limited knowledge and understanding about the 

disability culture in general, adaptive equipment, 

supportive services, and the strengths of parents 

with disabilities.1285 Because of these and other 

similarities between the causes of custody 

loss in the two communities—such as poverty, 

illiteracy, bias, and discrimination—portions 

of ICWA that provide remedy for the Native 

American community should be borrowed to 

strengthen new legislation to protect the rights of 

parents with disabilities and their children.1286

The following portions of ICWA—with 

attention to necessary disability adaptations—

can be applied in remedial legislation to address 

the issues of lack of knowledge about adaptive 

equipment, services, and assessments; 

problems with the mandated timelines in 

dependency cases; lack of adequate legal 

counsel in the dependency process; and a lack 

of adequate and timely adapted services in the 

dependency courts:1287

■ Mandatory written notification—with return 

receipt requested—must be provided 

to parents when a dependency action is 

instituted. No action may be taken until 

10 days after receipt of the notice by the 

parent. Upon request, the parent shall have 

the right to an additional 20 days to prepare 

for any such proceeding.1288

■ Mandatory appointment of counsel for the 

parent during any removal, placement, or 

termination proceeding.1289

■ Requirement that states provide 

evidence of active efforts to prevent 

the removal of a child or the termination 

of a parent’s rights.1290 Active efforts 

have been interpreted in case law to 

require more vigorous intervention than 

reasonable efforts, the standard set 

forth in the Adoption and Safe Families 

Act.1291

■ Requirement that no removals or 

terminations may occur in the absence 

of a determination (supported by clear 

and convincing evidence in the cases of 

removals and by reasonable doubt in the 

cases of termination) that failure to remove 

or terminate will seriously emotionally or 

physically damage the child.1292 Part of the 

showing must include the testimony of a 

qualified expert witness.1293

Conclusion

To protect the rights of parents with disabilities 

and their children, states must follow the 

impressive work done in Idaho, Kansas, and 

California—as well as the efforts of the other 

states mentioned here—by passing similar 

legislation. Moreover, federal legislation similar 

to ICWA must be enacted. Together, the 

language of these statutes provides cohesive 

and comprehensive remedy to the common 

causes of children being removed from parents 

with disabilities in family or dependency 

court. A discussion of model state and federal 

legislation follows in the next chapter.

234 National Council on Disability
With respect to fundamental liberty, 

the U.S. Constitution limits a 

state’s right to interfere with a 

person’s most basic decisions about family and 

parenthood.1294 And yet, 37 states have child 

welfare laws1295 and nearly every state has 

child custody and guardianship laws1296 that 

invidiously classify parents with disabilities and 

authorize removal and detention of their children 

or termination of their custody or parenting 

rights on the basis of the parent’s disability. This 

situation creates an atmosphere of doubt for the 

disability community and is not ethically or legally 

tenable. In the words of Supreme Court Justice 

John Paul Stevens, “Liberty finds no refuge in a 

jurisprudence of doubt.”1297

These laws serve no purpose and have no 

effect other than to lessen the status and human 

dignity of parents and prospective parents with 

disabilities in the United States, and to officially 

classify their relationships with their children as 

inferior to those of other parents. After nearly 

25 years of state court decisions involving 

these discriminatory laws and the policies and 

practices they engender, it is clear that existing 

federal regulations (the Bill of Rights,1298 the 

Rehabilitation Act of 1973,1299 the Americans 

with Disabilities Act,1300 and the Code of Federal 

Regulations1301) are not adequate to ensure 

the rights of parents with disabilities and their 

children.

History of Efforts to Challenge or 

Defeat Laws Harmful to Parents with 

Disabilities

The strongest law and argument to protect 

this population of families should be found in 

child welfare cases, where the Constitution is 

so strongly implicated. Yet even in child welfare 

Chapter 16.  Need for Legislation to Ensure t

Rights of Parents with Disabilities and 

Their Families

Julie Petty enjoys a dance with her 

six-year-old son Warren.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 235
jurisprudence, no successful antidiscrimination 

strategy has emerged.

Due Process

Parent litigants have 

unsuccessfully raised 

the due process clause 

of the 14th Amendment 

in both on-the-face and as-applied challenges 

to discriminatory laws and related policies.1302

Parenting is a fundamental right, and legislation 

that affects this right is subject to strict scrutiny 

on judicial review.1303 Theoretically, this interest 

is defeasible only by a compelling state interest 

and a rigorous procedural process.1304 However, 

some state laws allow child welfare systems 

and courts to deny reunification services—

the key procedural safeguard to retaining 

parenting rights in child welfare cases—even to 

nonoffending parents on the basis of the parent’s 

disability.1305 Often this disallowance is based 

solely on speculation that parental disability 

may be detrimental to a child at some point in 

the future. There is a contradiction between the 

treatment of parents with disabilities and that of 

parents without disabilities: In child welfare cases 

generally, such speculation is unacceptable; 

however, in cases that involve parents with 

disabilities, speculation is acceptable. At least 

one circuit has held that due process is violated 

and social workers can lose their immunity to 

lawsuit if they remove a child while consciously 

disregarding the “great risk that there has been 

no abuse.”1306

Some courts have avoided addressing this 

issue by holding that strict scrutiny does not 

apply on judicial review of the laws authorizing 

the policy, because there is no fundamental right 

to reunification services, despite their centrality 

to avoiding loss of a fundamental right.1307 This 

reasoning is equivalent to saying that if an African 

American citizen is allowed to vote but prevented 

by law from entering a 

voting booth, no violation 

of a fundamental right 

has occurred and strict 

scrutiny should not be 

applied during judicial review of the legislation. 

Other courts have held that a rigorous procedural 

process is in place to protect parents with 

disabilities because, in their state, the law 

disenfranchises parents with disabilities from 

participating in reunification services only after 

two psychologists have established that they are 

Eli Gelardin, Christina Mills and their 

daughter, 4 month old, Olivia, at the 

9th Annual Disability Capitol Action 

Day in Sacramento, California.

“Liberty finds no refuge in a 

jurisprudence of doubt.

236 National Council on Disability
unlikely to benefit from such services.1308 This is 

equivalent to saying that if an African American 

is allowed to vote but kept by law from voting 

unless he or she can pass a literacy test, no 

violation of a fundamental right has occurred and 

strict scrutiny is satisfied because a process is in 

place. The Voting Rights Act of 19651309 explicitly 

forbade such procedural obstructionism in voting 

policy; it should not be tolerated in child custody 

or child welfare policy. 

Equal Protection

Parent litigants have been similarly unsuccessful 

in using the equal protection clause of the 14th 

Amendment as a defense against discriminatory 

state laws. City of Cleburne v. Cleburne Living 

Center1310 established that disability is not a 

suspect classification and, in theory, a simple 

rationality test is the only hurdle a state is 

required to clear.1311 However, although the 

Cleburne court said “rational,” the analysis 

applied in the decision is widely recognized to 

represent something more akin to heightened 

scrutiny (“active rationality” or “rationality with 

a bite”).1312 There was hope that after passage 

of the ADA, this intermediate scrutiny would 

be formally recognized as the proper level of 

judicial review in disability cases because of 

the congressional direction it represents—a 

direction the Cleburne court complained that it 

lacked.1313 This has not occurred, and no court to 

date has struck down on the basis of irrationality 

any child custody or child welfare law alleged to 

discriminate against parents with disabilities. This 

despite the fact that the laws cannot be proved 

to be substantially related to the objective of 

promoting child welfare as there is no evidence 

that child maltreatment is more prevalent among 

parents with disabilities.

1314

Rehabilitation Act and Americans with 

Disabilities Act

Parent litigants have achieved only slightly more 

success in raising the Rehabilitation Act or the 

ADA as a defense against discriminatory laws. 

Pursuant to both laws, state actors, including 

child welfare agencies and courts, may not 

discriminate against people with disabilities; 

rather, they must accommodate them and 

provide, where needed, more, different, or 

adapted services and programs to satisfy the 

requirements of the law.1315

State legislatures, child welfare systems, 

and juvenile, family, and probate courts have 

resisted the implications of both acts for child 

welfare or custody statutes. This resistance 

persists despite the established legal principle 

that a state statute is void if it contravenes any 

express provision of a valid federal statute, 

even in areas traditionally within the purview 

of the state, where the congressional intent is 

clear.1316 Not one court has voided one of these 

laws for violation of the ADA on the basis that 

it discriminates against parents with disabilities 

or their children (who are theoretically protected 

from discrimination by association by both 

the ADA and the Rehabilitation Act).1317 It is 

almost uniformly accepted that violation of 

the ADA is not a defense to termination of 

parental rights,1318 and few courts have found 

services unreasonable for failure to provide 

accommodations.1319

Parents with disabilities cannot win these 

cases without legislation specific to them. 

Two possible avenues exist for creating such 

legislation: federal legislation in the form of an 

amendment to the ADA or a stand-alone federal 

law, or a concerted and organized national 

campaign to uniformly introduce a model-based 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 237
state law in each state. Both approaches have 

strengths and weaknesses. 

State Legislation

This type of legislation is clearly addressable 

at the state level, as shown in Idaho, Kansas, 

and California. The state law approach avoids 

constitutional complications in that family 

and domestic law is historically within the 

purview of the states. The drawback of stateby-state legislative efforts is the enormity of the 

undertaking, the complexity of organizing on 

so many fronts, and the risk that a significant 

number of the efforts will fail and the patchwork 

quilt of laws will remain. 

Federal Legislation

The federal law approach, whether as an 

amendment to the ADA or as a stand-alone 

piece of legislation, avoids the drawbacks of 

state legislative efforts. It would provide national 

uniformity and, therefore, predictability to 

litigants and systems. However, a constitutional 

complexity exists: Opponents would likely argue 

that the commerce clause does not support 

federal intrusion into traditional state subject 

matter. The spending clause—in which the 

Adoptions and Safe Families Act is grounded—is 

a better possibility, but it would require funding 

that is unlikely in the current economic climate. 

However, Section 5 of the 14th Amendment 

does empower Congress to “to enforce, by 

appropriate legislation” the provisions of the 

14th Amendment.1320 The two-part Section 5 

review framework enunciated by the Court in 

Tennessee v. Lane1321 both synthesized and 

modified elements of the analysis developed in 

six previous Supreme Court cases.1322 Former 

Supreme Court clerk Kevin Schwartz, in his Yale 

Law Review article “Applying Section 5: Judicial 

Conditions on the Congressional Enforcement 

Power,” referred to this analysis as a “juricentric 

enforcement model.” Schwartz wrote, “The 

Court asks, first, whether Congress’s [Section]... 

5 power is appropriately invoked and, second, 

whether the actual Section 5 law crafted by 

Congress is an appropriate remedy.”1323

To satisfy the first prong, there must be 

a history or pattern of state violations of the 

fundamental liberty Congress is seeking to 

protect.1324 Second, the violations must be 

unconstitutional according to previous Section 5 

decisions by the Court.1325 To satisfy the second 

prong, the legislation must create a “congruent 

and proportional” response to the violations.1326

The model legislation could satisfy both prongs. 

Regarding the first prong (constitutional 

violation offensive to the court), parenting is a 

judicially identified fundamental liberty with a 

robust Supreme Court jurisprudence to support 

the requirements of due process where the state 

is interfering in the family sphere. Numerous 

state statutes deprive parents with disabilities of 

due process on the basis of their classification 

as disabled. A historic record exists of violations 

in the form of congressional testimony regarding 

the need for passage of the ADA, current data 

documenting disparate impact in the child welfare 

system, and extensive anecdotal evidence from 

individuals aggrieved by disability discrimination 

in child welfare and child custody proceedings. 

All these forms of “evidence” support finding 

a pattern of state violation under the Lane 

analysis.1327

Regarding the second prong (congruent 

remedy) the model legislation is certainly no more 

far-reaching than Title II of the ADA, which was 

upheld as applied in Lane. The Court noted in 

238 National Council on Disability
that case that “within the limits of practicability, 

a state must afford to all individuals a meaningful 

opportunity to be heard in its courts,”1328 and 

endorsed Congress’s remedial conclusion that 

“failure to accommodate persons with disabilities 

will often have the same practical effect as outright 

exclusion.”1329 It is logical that a court would find 

that within the limits of practicability, a state 

must afford all parents meaningful access to the 

services, programs, and activities of child welfare 

system and dependency, family, and probate 

courts. As this report has shown, the failure to 

accommodate people with disabilities often has 

the same practical effect as outright exclusion. 

Conclusion

Whether action is taken at the state or 

federal level, as an amendment or a new law 

altogether—the need for action could not be 

more timely or clear. 

Recently, the media have reported that some 

survivors of the eugenics era are seeking justice 

for the state’s denying them the possibility of 

having children, and the public has been outraged 

on their behalf. But what will it take for our 

society to become outraged and act to prevent 

the removal of existing children from parents 

with disabilities? People must be helped to see 

that, in the disability community, prevention 

of procreation and removal of children are two 

sides of the same coin, tossed in time from one 

generation to the next. 

NCD recommends that Congress enact 

legislation similar to ICWA, in accordance with 

the language set forth in Appendix C of this 

report, to ensure the rights of parents with 

disabilities and their children. Alternatively, a 

legislative amendment to the ADA (in accordance 

with the language set forth in Appendix D) 

and other relevant federal acts governing child 

welfare, child custody, adoption, and assisted 

reproductive technologies will be necessary to 

effect the intention of the ADA at the national 

level. Moreover, states are urged to immediately 

amend state statutes with the language set forth 

in Appendix C. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 239
240 National Council on Disability
T

he foregoing chapters have examined the 

experiences of parents with disabilities 

and their families. Research and anecdotal 

evidence shared by parents with disabilities 

demonstrate the significant, and systemic, 

barriers facing people with disabilities wanting 

to create and maintain families. Further, a 

review of promising practices and supports 

demonstrate the potential of these families 

when provided necessary services. Finally, 

an analysis of state and federal legislation of 

interest revealed ways that parenting rights 

can be protected. This chapter sets forth major 

findings and concrete recommendations flowing 

from the study and charts a strategy for the 

future. If these recommendations are followed, 

people with disabilities will be fully able to 

possess their fundamental right to create and 

maintain families.

FINDING 1: There are few accurate and 

comprehensive sources of information on the 

prevalence of parents with disabilities.

Despite increasing numbers of people with 

disabilities creating families, there is a paucity 

of data and research on the prevalence of 

parents with disabilities, their needs, and their 

experiences. Reasons for this lack of information 

include the lack of attention paid to the needs 

and experiences of parents with disabilities and 

their families, the dearth of administrative and 

research data on parents with disabilities, and 

the lack of funding for research. Adequate policy 

development and program planning to address 

the issues and meet the needs of parents 

with disabilities and their children cannot occur 

without accurate prevalence data and more 

detailed information about the circumstances, 

goals, and needs of these families.

Chapter 17. Findings and Recommendatio

Recommendations

■ The Administration should issue an Executive Order establishing an Interagency 

Committee on Parents with Disabilities.

NCD recommends that the Administration issue an Executive Order establishing an 

Interagency Committee on Parents with Disabilities. Members of this committee should 

include NCD; the Department Health and Human Services (HHS), specifically the 

Administration for Community Living (ACL), including the Administration on Intellectual 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 241
FINDING 2: The child welfare system is 

ill-equipped to support parents with 

disabilities and their families, resulting in 

disproportionately high rates of involvement 

with child welfare services and devastatingly 

high rates of parents with disabilities losing 

their parental rights.

Parents with disabilities and their children are 

overly, and often inappropriately, referred to 

child welfare services and, once involved, are 

and Developmental Disabilities (AIDD) and the Administration for Children and Families 

(ACF); Department of Labor (DOL), specifically the Office of Disability Employment Policy 

(ODEP) and Employment and Training Administration (ETA); Department of Justice (DOJ); 

Substance Abuse and Mental Health Services Administration (SAMHSA); Social Security 

Administration (SSA); Department of Agriculture (USDA); Department of Transportation 

(DOT); Centers for Medicare and Medicaid Services (CMS); Department of Housing and 

Urban Development (HUD); National Institute for Disability and Rehabilitation Research 

(NIDRR); Department of Education (ED); Department of Veterans Affairs (VA); and 

Rehabilitation Services Administration (RSA).

■ Congress, the Administration, and federal agencies should gather effective data on 

parents with disabilities and their families.

NCD recommends that Congress and the Administration develop initiatives to produce 

effective and comprehensive data on parents with disabilities and their families. Federal 

agencies—including but not limited to the Federal Interagency Forum on Child and Family 

Statistics, HHS, SAMHSA, SSA, USDA, CMS, VA, and HUD—should collect data on the 

parents with disabilities and the families they serve. The Centers for Disease Control and 

Prevention (CDC) should conduct a surveillance survey to determine the prevalence of 

parents with disabilities. Similarly, key systems that serve people with disabilities—such 

as state disability and veterans agencies, Centers for Independent Living, disability and 

mental health providers, and paratransit agencies—must collect data on the parental status 

of their clients/consumers.

■ Congress, the Administration, and federal agencies should fund research on parents 

with disabilities and their families.

NCD recommends that Congress appropriate funding specifically for research on parents 

with disabilities and their families. Further, NCD recommends that federal agencies such 

as the Interagency Committee on Disability Research (ICDR), AIDD, the National Institutes 

of Health (NIH), and SAMHSA emulate and collaborate with NIDRR in dedicating funding 

to research on parents with disabilities and their families, focusing on their needs and how 

best to support them. This will necessarily involve demonstration projects and evaluative 

service models.

242 National Council on Disability
permanently separated at disproportionately 

high rates. Parents with disabilities have their 

children removed at disproportionately high rates 

owing to a number of factors, including (1) state 

statutes that include disability as grounds for 

termination of parental rights (TPR); (2) the 

disparate impact of certain provisions of the 

Adoption and Safe Families Act of 1997 (ASFA); 

(3) perceived limits on the application of the 

Americans with Disabilities Act (ADA), especially 

at the termination phase; (4) bias, speculation, 

and the “unfit parent” standard; and (5) a lack of 

training in relevant systems regarding parents 

with disabilities. 

Recommendations

■ States must eliminate disability from their statutes as grounds for termination of 

parental rights and enact legislation that ensures the rights of parents with disabilities.

NCD recommends that states eliminate disability from their dependency statutes as 

grounds for TPR. Further, NCD recommends that all states enact legislation, in accordance 

with the language set forth in Appendix C of this report, to ensure the rights of parents 

with disabilities.

■ Congress should address the disparate treatment experienced by parents with 

disabilities by adding specific protections for parents with disabilities in the 

Adoption and Safe Families Act.

NCD recommends that Congress amend ASFA by adding specific protections for parents 

with disabilities. Specifically, language must be added to the (1) “15/22” rule, allowing for 

additional time for parents with disabilities; and (2) the “reasonable efforts” provision to 

keep children with their parents, both to prevent or eliminate the need for removal of the 

child from the family and to make it possible for the child to return to the family following 

removal by eliminating the bypass provision (which allows states to bypass efforts to reunify 

families in certain situations) as applied to parents with disabilities and ensuring that child 

welfare agencies comply with the law and make reasonable efforts to prevent the removal 

of children and provide reunification services for parents with disabilities and their families.

■ Congress should address the disparate treatment experienced by parents with 

disabilities resulting from the focus on permanency by shifting funding priorities at 

the federal level so that states have a greater incentive to provide prevention and 

preservation services.

NCD recommends that Congress shift funding priorities at the federal level so that states 

have a greater incentive to provide services to families while the children are maintained in 

the home, as research has shown that in-home services are most effective, particularly for 

people with disabilities. 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 243
■ DOJ, in collaboration with HHS, should issue guidance to states (specifically child 

welfare agencies and dependency courts) on their legal obligations pursuant to the ADA.

NCD recommends that DOJ, in collaboration with HHS, issue guidance to states 

(specifically child welfare agencies and dependency courts) reinforcing their legal 

obligations pursuant to the ADA. Such guidance must address (1) the applicability of the 

ADA to TPR proceedings; (2) the duty of child welfare agencies and dependency courts to 

provide reasonable accommodations to parents with disabilities; and (3) presumptions of 

parental incompetence based on disability violate the ADA.

■ HHS and DOJ should gather data on parents with disabilities and their interaction 

with child welfare and dependency court systems.

NCD recommends that HHS and DOJ collect annual data on parents with disabilities 

and their interaction with child welfare agencies and dependency courts. Such data must 

include (1) disability, (2) exact involvement, (3) services and reasonable accommodations 

provided, and (4) outcome.

■ DOJ, in collaboration with HHS, must investigate all allegations of child welfare 

agencies or dependency courts that violate federal disability laws and enforce them 

as appropriate.

NCD recommends that DOJ include such matters in its enforcement priorities; violations 

of parental rights must be considered violations of civil rights. HHS (which has institutional 

expertise in the functioning of the child welfare system and courts) and DOJ’s Civil 

Rights Division should collaborate to enrich investigations into alleged violations of the 

Rehabilitation Act or the ADA by these entities with respect to parents with disabilities 

and their children. This could be effected through a memorandum of understanding 

establishing a synergistic partnership (such as the interagency agreement between the 

DOJ Civil Rights Division and the Department of Transportation) or the creation of a special 

section integrating expertise from the two departments (such as the Housing and Civil 

Enforcement Section of the DOJ Civil Rights Division). 

■ The HHS Children’s Bureau should collaborate with NIDRR in funding and directing 

NIDRR’s National Center for Parents with Disabilities and Their Families.

NCD recommends that the HHS Children’s Bureau collaborate with NIDRR in funding and 

directing NIDRR’s National Center for Parents with Disabilities and Their Families. NIDRR 

has funded such centers since 1990, with regular competition for awards every three to 

five years. The added funding and direction would allow the National Center to develop 

additional knowledge and provide additional technical assistance to federal, state, and local 

agencies and tribes to improve outcomes for families with parents with disabilities in the 

child welfare and family court systems.

244 National Council on Disability
FINDING 3: Parents with disabilities who are 

engaged in custody or visitation disputes in 

the family law system regularly encounter 

discriminatory practices.

Parents with disabilities who are seeking or 

defending custody or visitation rights often 

encounter a family law system that is riddled 

with practices that discriminate against them. 

Such practices include (1) a system that is 

pervaded with bias; (2) inconsistent state laws, 

many that overtly discriminate against parents 

with disabilities, others that fail to protect them 

from unsupported allegations that they are unfit 

or create a detrimental impact on their children 

solely on the basis of presumption or speculation 

regarding the parental disability; and (3) a lack of 

expertise or even familiarity regarding parents 

with disabilities and their children.

Recommendations

■ Family court professionals—including judges, attorneys, and evaluation personnel—

should receive training related to parenting with a disability.

NCD recommends that all family court professionals—including judges, attorneys, and 

evaluation personnel— receive training on a regular basis on parents with disabilities and 

their children. This training should be a mandatory component of continuing education 

requirements for such professionals.

■ DOJ should issue guidance to family courts on their legal obligations pursuant to 

the ADA.

NCD recommends that DOJ issue guidance to family courts, reinforcing their legal 

obligations pursuant to the ADA. Such guidance must address (1) the applicability of the 

ADA to custody and visitation proceedings, (2) the courts’ duty to provide reasonable 

accommodations to parents with disabilities, and (3) presumptions of parental 

incompetence based on disability that violate the ADA.

■ States must modify their custody and visitation statutes to eliminate language that 

discriminates against parents with disabilities.

NCD recommends that states eliminate parental disability as a factor that courts can 

consider when determining the “best interest of the child” in custody and visitation 

disputes. Further, NCD recommends that all states enact legislation, in accordance with 

the language set forth in Appendix C of this report, to ensure the rights of parents with 

disabilities.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 245
FINDING 4: Parents with disabilities who are 

involved in dependency or family proceedings 

regularly face evidence regarding their 

parental fitness that is developed using 

inappropriate and unadapted parenting 

assessments. Resources are lacking to provide 

adapted services and adaptive parenting 

equipment, and to teach adapted parenting 

techniques.

Parents with disabilities who are involved in 

dependency or family proceedings regularly face 

(1) evidence regarding their parental fitness that 

is developed using inappropriate and unadapted 

parenting assessments and (2) a national dearth 

of resources to provide adapted services and 

adaptive parenting equipment, and to teach 

adapted parenting techniques. Even when such 

resources exist, dependency and family courts do 

not often use them.

Recommendations

■ State statutes, rules of court, and professional standards must require that parenting 

assessments be fully accessible to parents with disabilities.

NCD recommends that state statutes, rules of court, and professional standards must 

require evaluators to thoroughly investigate whether they are in compliance with the 2012 

American Psychological Associations Guidelines for Assessment of and Intervention With 

Persons With Disabilities, and whether they need to modify the evaluation process or 

incorporate parenting adaptations to provide a more valid, reliable assessment of a parent’s 

capacities in the context of child welfare and child custody cases. Such standards must 

require adapted naturalistic observations—for instance, in the parent’s modified home 

setting rather than in an unfamiliar setting—instead of leaving the venue for observation 

open to the evaluator’s discretion; must require explicit evidentiary support for statements 

made about a parent’s capacity; and must prohibit the use of speculation and global 

diagnostic or disability labels as a ground for limiting custody or visitation. Professional 

standards must address the problem of using standardized testing to assess parenting 

capacity in parents with disabilities. Further, evaluators must use tools that have been 

developed specifically to assess the capabilities and needs of parents with disabilities, 

particularly intellectual and developmental disabilities, and should include existing and 

natural supports in the assessment.

■ States must mandate training for custody evaluators on parents with disabilities and 

their children.

NCD recommends that state legislatures mandate training for current custody evaluators 

to teach them the skills necessary to conduct competent disability-related custody 

246 National Council on Disability
FINDING 5: Prospective adoptive parents 

with disabilities face significant barriers to 

adopting children, both domestically and 

internationally.

Despite a growing need for adoptive parents, 

people with disabilities regularly encounter 

discriminatory practices that eliminate them 

solely because of their disabilities. 

evaluations. Such training must include valid methods that directly evaluate parenting 

knowledge and skills, and must consider the role of adaptations or environmental factors 

that can impede or support positive outcomes.

■ CMS must expand the definition of durable medical equipment (DME) to include 

adaptive parenting equipment.

NCD recommends that CMS expand its definition of DME to include adaptive parenting 

equipment for parents with disabilities who receive Medicaid or Medicare. 

■ States should establish adaptive parenting equipment reuse and loan programs.

NCD recommends that states establish adaptive parenting equipment reuse and loan 

programs similar to the programs states now have pursuant to the Assistive Technology 

Act of 2004.

Recommendations

■ DOJ should issue guidance to domestic public and private adoption agencies, as 

well as private adoption agencies engaging in international adoption on U.S. soil, 

regarding their legal obligations pursuant to the ADA.

NCD recommends that DOJ issue guidance to domestic public and private adoption 

agencies, as well as private adoption agencies engaging in international adoption on U.S. 

soil, regarding their legal obligations pursuant to the ADA. Such guidance must address 

the agencies’ duty to provide reasonable accommodations to prospective adoptive parents 

with disabilities throughout all phases of the process and state that presumptions of 

parental incompetence based on disability violate the ADA. 

■ DOJ must investigate all reported allegations of public and private adoption agencies 

violating the ADA and enforce the law as appropriate.

NCD recommends that DOJ investigate all reported allegations of domestic public 

and private adoption agencies violating the ADA and enforce the law as appropriate. 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 247
Discrimination in the adoption process against prospective parents with disabilities must 

be considered a violation of civil rights.

■ The Department of State should dedicate resources to expanding the rights of 

people with disabilities to adopt internationally.

NCD recommends that the Office of Children’s Issues (CI), part of the Bureau of Consular 

Affairs at the Department of State, and the Department of State’s Office of the Special 

Advisor for International Disability Rights work together to expand the rights of people with 

disabilities to adopt internationally, particularly from those nations that have ratified the 

Hague Convention. Such work will require educating state and private adoption agencies 

in other countries on the capacity of people with disabilities to parent, with or without 

adaptive parenting equipment, techniques, or supportive services.

■ Adoption agency staff must undergo training on how to fully assess prospective 

parents with disabilities.

NCD recommends that adoption agency staff who are responsible for evaluating 

prospective adoptive parents or conducting home studies to assess fitness for adoptive 

placement be provided with training regarding parents with disabilities, adaptive 

equipment, techniques, and supportive services. 

FINDING 6: People with disabilities face 

significant barriers to receiving assisted 

reproductive technologies (ART), despite its 

importance for many people with disabilities 

who want to procreate.

ART can enable many people with disabilities 

to procreate who would otherwise be unable to 

do so. However, many people with disabilities 

face significant, and sometimes insurmountable, 

barriers to receiving ART. ART providers regularly 

engage in discriminatory practices against 

people with disabilities, and the growing costs 

of ART, combined with the limited insurance 

coverage for these treatments, leave many 

people with disabilities unable to afford the 

treatment.

Recommendations

■ DOJ, in collaboration with HHS, should issue guidance to ART providers on their 

legal obligations pursuant to the ADA and the Rehabilitation Act.

NCD recommends that DOJ, in collaboration with HHS, issue guidance to ART 

providers regarding their legal obligations pursuant to the ADA and the Rehabilitation 

248 National Council on Disability
FINDING 7: Personal assistance services (PAS) 

are a crucial support for many people with 

disabilities but usually may not be used to 

assist them with their parenting activities.

PAS are a crucial support for more than 

13.2 million people with disabilities. They help 

people with disabilities with activities of daily 

living (ADLs, such as eating, bathing, dressing, 

and toileting) and with instrumental activities of 

daily living (IADLs, such as grocery shopping, 

cooking, and cleaning). Cost is the most 

significant barrier for parents with disabilities 

who need PAS. They face significant challenges 

because no government program provides them 

with assistance in caring for their nondisabled 

children. PAS are considered beyond the purview 

Act. Such guidance must address the providers’ duty to provide access and reasonable 

accommodations throughout all phases of the process and must state that presumptions 

of parenting ability based on disability violate the ADA.

■ DOJ, in collaboration with HHS, must investigate all reported allegations of ART 

providers violating the ADA and the Rehabilitation Act, and enforce the law as 

appropriate.

NCD recommends that DOJ investigate all reported allegations of ADA and Rehabilitation 

Act violations by ART providers and enforce them as appropriate.

■ HHS must issue guidance to ART providers on treating patients with disabilities and 

make training available on parenting capacity.

NCD recommends that HHS—collectively the ACL, CDC, NIH, Office for Civil Rights, 

and the Office of the Surgeon General—issue guidance to ART providers on treating 

patients with disabilities and their legal obligations to provide access and reasonable 

accommodations. ART office staff responsible for evaluating prospective parents to assess 

fitness should be provided with training regarding parents with diverse disabilities, adaptive 

parenting equipment and techniques, and supportive services. 

■ ART professional organizations must issue guidance to their members on treating 

patients with disabilities.

NCD recommends that ART professional organizations, such as the Society for 

Reproductive Technologies and the American Society for Reproductive Medicine, issue 

guidance to ART providers on treating patients with disabilities and their legal obligations to 

provide access and reasonable accommodations.

■ Medicaid and Medicare must fund ART for people with disabilities.

NCD recommends that CMS identify and implement mechanisms to pay for ART for 

Medicaid and Medicare beneficiaries with disabilities.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 249
of assistance that may be provided as it does not 

assist the persons with disabilities themselves. 

Other Western nations provide this service 

to consumers, funding and implementing the 

program in a variety of ways. PAS oriented 

toward parenting tasks would greatly assist 

parents with disabilities and their families. The 

benefits of PAS go beyond improving quality 

of life—they have also been found to be costeffective.

FINDING 8: Parents with disabilities face 

significant barriers to obtaining accessible, 

affordable, and appropriate housing for their 

families.

Having a home is crucial to creating and 

maintaining a family. However, many parents with 

disabilities face significant barriers in securing 

accessible, affordable, and appropriate housing. 

Recommendation

■ CMS must expand its definition of ADLs to include parenting activities.

NCD recommends that CMS expand its definition of ADLs to include parenting activities so 

that funded PAS can help consumers with their parenting responsibilities.

Recommendations

■ HUD must require that public housing agencies (PHAs) provide at least 50 percent of 

their accessible units in family housing developments.

NCD recommends that HUD require PHAs to provide at least 50 percent of their 

accessible units in family housing developments. Such units must comply with all relevant 

federal disability access requirements and must include the same family-oriented space 

and appointments found in other units.

■ HUD should establish a national modification fund to pay for reasonable 

modifications to make private units accessible.

NCD recommends that HUD develop a national modification fund to pay for reasonable 

modifications to make private units accessible for parents with disabilities and their families. 

■ HUD should develop a program for parents with disabilities who are first-time 

homeowners.

NCD recommends that HUD develop a program for parents with disabilities who are firsttime homeowners. This program should include counseling and low-interest loans.

250 National Council on Disability
FINDING 9: Many parents with disabilities face 

barriers to traveling with their families using 

paratransit services.

Transportation affects all areas of the lives of 

parents with disabilities and their families—

from child care to housing to participating 

in a child’s education and meeting a child’s 

medical needs. Nevertheless, it remains 

one of the most challenging areas for many 

parents with disabilities and their families. 

Paratransit services—a support used by 

many parents with disabilities—have many 

barriers related to parents traveling with their 

families.

FINDING 10: Parents with disabilities have 

significantly less income and more frequently 

receive public benefits.

The financial status of parents with disabilities 

and their families is bleak. In fact, the most 

significant difference between parents with 

disabilities and parents without disabilities 

is the economic difference. Parents with 

disabilities are more likely to receive public 

benefits. A recent survey found that 52 percent 

of parents with disabilities receive SSI, and a 

substantial number of parents with disabilities 

and their families receive SSDI, SNAP, and 

TANF. Many parents with disabilities find that 

these programs do not adequately meet their 

families’ needs.

Recommendation

■ The Department of Transportation must issue guidance to paratransit providers on their 

legal obligations to transport parents with disabilities and their families to support the 

successful execution of parenting and employment roles by people with disabilities.

NCD recommends that DOT issue guidance to paratransit providers that reflects its 

findings in Letter of Findings for FTA Complaint #99096 regarding their obligation to 

facilitate the use of the system by parents with disabilities and their children without 

additional charges or discriminatory conditions.

Recommendations

■ SSA must explore ways to serve SSI and SSDI beneficiaries who are parents more 

effectively.

NCD recommends that SSA begin an exploratory project to determine how to serve SSI 

and SSDI beneficiaries more effectively, focusing on ways to increase financial assistance 

to parents with disabilities and their families.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 251
■ The HHS Administration for Children and Families (ACF) must provide additional 

supports to parents with disabilities who receive TANF. Such efforts will require 

collaboration with the Rehabilitation Services Administration (RSA) and state 

vocational rehabilitation agencies.

NCD recommends that ACF provide additional supports to parents with disabilities who 

receive TANF. Pursuant to the Personal Responsibility and Work Opportunity Reconciliation 

Act of 1996 (PRWORA), parents who receive TANF must work a specific number of hours 

(determined by the age of their children). PRWORA also imposes a five-year lifetime 

limit on assistance. Without appropriate family and work supports to overcome barriers 

to employment, parents with disabilities, especially single mothers, may be unable to 

comply with the PRWORA/TANF regulations, resulting in a loss of benefits to families. 

Specifically, work requirements do not consider disabilities as a barrier to work. Low-paying 

work and lack of job training programs for people with disabilities are common obstacles 

to employment, and people with disabilities face significant discrimination in the hiring 

process, further hindering their ability to comply with the work requirements. Finally, some 

parents with disabilities—such as those with intellectual and developmental disabilities—

may need long-term employment support, such as career planning and training. ACF must 

provide support to parents with disabilities who receive TANF, including job training, child 

care, and transportation. Such efforts will require collaboration with RSA, DOL, ODEP, ETA, 

and state vocational rehabilitation agencies.

FINDING 11: People with disabilities, 

especially women, face significant barriers to 

receiving proper reproductive health care.

Proper health care, especially reproductive health 

care, is crucial for people who want to create 

and maintain families. People with disabilities, 

particularly women, face significant barriers to 

receiving accessible, affordable, and appropriate 

health care.

Recommendations

■ The Agency for Healthcare Research and Quality (AHRQ), within its mandate to 

undertake research on priority populations, should promote research that clearly 

identifies the various barriers encountered by women with disabilities who are 

seeking reproductive health care. 

252 National Council on Disability
NCD recommends that AHRQ, within its mandate to undertake research on priority 

populations, promote research that clearly identifies the various barriers encountered by 

women with disabilities who are seeking reproductive health care. Such research would help 

disability health policy researchers and other stakeholders to paint an accurate picture of, for 

example, the extent to which reproductive health care technologies, facilities, and equipment 

remain inaccessible to women with disabilities, and would bolster efforts to effect change.

■ The Association of American Medical Colleges (AAMC) and the Liaison Committee 

on Medical Education (LCME) should convene a workgroup charged with identifying 

specific disability competencies that should be required of health care professionals 

before they graduate from medical and residency training programs, and should 

translate these competencies into specific course recommendations that can be 

adopted by medical training programs. 

NCD recommends that AAMC and LCME convene a workgroup charged with identifying 

specific disability competencies that should be required of health care professionals before 

they graduate from medical and residency training programs, and should translate these 

competencies into specific course recommendations that can be adopted by medical 

training programs. Competencies should include the core knowledge and skills required 

to provide appropriate health care to people with diverse disabilities, as well as general 

awareness of reproductive health care issues and concerns of women with disabilities. 

Such training should also address parenting with a disability.

■ DOJ, in collaboration with HHS, must increase its monitoring and enforcement of the 

ADA and Section 504 of the Rehabilitation Act for health care facilities and programs.

NCD recommends that DOJ, in collaboration with HHS, increase its monitoring and 

enforcement of the ADA and Section 504 of the Rehabilitation Act for health care facilities 

and programs. DOJ must focus additional resources on compliance monitoring and 

investigation of Title III complaints concerning programmatic access violations of the ADA 

and Section 504 by health care providers.

■ CMS must identify and implement mechanisms to pay for comprehensive 

preconception care for Medicaid and Medicare beneficiaries with disabilities.

NCD recommends that CMS identify and implement mechanisms to pay for comprehensive 

preconception care for Medicaid and Medicare beneficiaries with disabilities.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 253
FINDING 12: Parents and prospective parents 

with disabilities face a significant lack of peer 

supports.

The importance of peer supports for parents 

and prospective parents with disabilities is 

significant because of the limited information 

that is available on parenting with a disability. 

Parents with disabilities often lack positive 

parenting role models. Moreover, social isolation 

is a significant issue for many parents with 

disabilities, particularly parents with intellectual 

and developmental disabilities, owing to learning 

difficulties, transportation challenges, and 

discrimination by nondisabled parents. Peer 

support networks can be easily developed 

or expanded at a minimal cost and would be 

supportive for many parents.

Recommendation

■ Congress should appropriate funding to establish a national parenting network for 

parents with disabilities.

NCD recommends that Congress appropriate funding to establish a national parenting 

network for parents with disabilities. A primary national network should include peer staffing, 

provide peer-to-peer links, gather information, and provide links to other networking efforts, 

including those in proposed state sites. The network should maintain an accessible Web site 

and a “warm line” (during business hours) with cross-disability, legal, and crisis intervention 

expertise. Proposed state sites should include peer staffing and peer-to-peer networking as 

well as links to the national network. State sites could also maintain an accessible Web site 

and warm lines with cross-disability and crisis intervention expertise and links to resources in 

their regions. Additionally, peer support groups could be located in independent living centers 

and in programs that specialize in parents with disabilities or deafness. These local parent 

support groups could provide the ongoing peer connections that are important to alleviate 

isolation in communities. Collaboration among the national, state, and local services—

including training and dissemination of information—should be a priority.

FINDING 13: Social service providers 

regularly overlook the parenting role of their 

consumers.

Disability, mental health, child welfare, housing, 

transportation, and other service providers 

play a significant role in the lives of many 

people with disabilities. The services provided 

by these agencies typically overlook the 

parenting needs of the consumer or client. In 

fact, research demonstrates that the majority 

of providers have no idea which of their clients 

are parents.

254 National Council on Disability
Recommendations

■ Service providers must gather data on the parenting status of the people they serve.

NCD recommends that service providers under the authority of the Department of 

Education, Equal Employment Opportunity Commission, HHS, HUD, Department of the 

Interior, DOJ, and DOT gather and report annual data on the parenting status of the people 

with disabilities they serve through state and federally administered programs that include 

this population.

■ States must develop and implement mechanisms that support integrated, 

family-centered, strengths-based care for parents with disabilities and their 

children.

NCD recommends that states develop and implement mechanisms to support 

integrated, family-centered, strengths-based care for parents with disabilities and 

their children. Agencies and service providers that work with parents and their 

families need to communicate and coordinate with each other. Coordination across 

agencies should facilitate the provision of more appropriate services in a more 

cost-effective fashion. Further, funding for adult and child services must be familycentered and not siloed. This will require a reorganization of the administration and 

funding of disability services to support the system’s capacity to respond to family 

needs whether the “identified client” is the adult or the child, and encourage a 

“family wraparound approach.” States will have to modify interagency agreements 

and vendor contracts to permit the inclusion of language and expectations for 

integrated, family-centered, strengths-based care for parents with disabilities and their 

children.

FINDING 14: Formal IDEA Part C Early 

Intervention (EI) programs and other nonPart C early intervention and prevention 

model programs are an appropriate service 

option for many children of parents with 

disabilities.

Early intervention and prevention model 

programs have the potential to fully 

accommodate parents with disabilities; thus, 

efforts must be made to ensure that parents with 

disabilities and their families are considered for 

services. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 255
FINDING 15: Parents with disabilities involved 

in dependency or family law proceedings face 

significant barriers to retaining effective and 

affordable legal representation.

Parents with disabilities face significant barriers 

to retaining effective and affordable legal 

representation for dependency and family 

law proceedings. Many attorneys lack the 

skills and experience necessary to meet the 

needs of parents with disabilities. Parents with 

disabilities are often represented by courtappointed legal representatives who typically 

have excessive caseloads and little if any 

training in disability. Research demonstrates 

that attorneys who represent parents with 

disabilities in these matters often fail to 

represent the parents’ best interests; they 

may harbor stereotypes about parents with 

disabilities that can reinforce their impression 

that such cases are unwinnable, and many fail 

to understand the implications of the ADA in 

these such cases.

Recommendation

■ The Department of Education and HHS must identify and implement mechanisms 

for Part C Early Intervention programs, other early intervention and prevention 

model programs, and Early Head Start to adequately serve the needs of parents with 

disabilities and their families.

NCD recommends that the Department of Education and HHS identify and implement 

mechanisms for early intervention and prevention programs, including Early Head Start and 

Head Start, to serve the needs of parents with disabilities and their families. Further, early 

intervention and prevention model program service providers require education about the 

needs of parents with disabilities and their families, including how to remediate barriers to 

full participation in services.

Recommendation

■ Protection and Advocacy (P&A) agencies must establish parenting rights as a formal 

priority, and funding must be appropriated accordingly.

NCD recommends that P&A agencies establish protection of custody and parenting rights 

as a formal national priority. To that end, Congress should establish and authorize additional 

funding for P&A systems nationally to meet the legal needs of parents with disabilities and 

their children in child welfare and child custody cases.

256 National Council on Disability
FINDING 16: Centers for Independent Living 

(CILs), with appropriate training, can provide 

services to parents with disabilities.

Given the breadth and importance of CILs and 

the supports they provide, with training they 

have the potential to participate in the support of 

parents with disabilities, especially to advocate 

regarding transportation, housing, financial 

advocacy, and assistive technology issues, and to 

offer parent support groups.

Recommendation

■ CILs must make serving the needs of parents with disabilities a national priority, and 

funding must be appropriated accordingly.

NCD recommends that CILs make serving the needs of parents with disabilities a national 

priority. To that end, Congress and RSA must appropriate additional funding to support this 

unmet need.

FINDING 17: Despite limited funding and 

little national attention given to parents with 

disabilities and their families, a number of 

programs and support services have begun 

to emerge across the nation; they must be 

replicated nationally to provide consistent 

capacity to support parents with disabilities 

and their children.

Programs that serve the needs of parents 

with disabilities remain scarce. Nevertheless, 

despite limited funding and little national 

attention given to parents with disabilities 

and their families, a number of programs and 

support services have begun to emerge across 

the nation. Several programs show promise, 

long-term sustainable impact, and the potential 

for replication. Generally, they are small, local 

programs that are part of larger disability 

services organizations. The programs, for 

the most part, are specific disability focused, 

meaning they provide services to parents with a 

certain disability (e.g., intellectual disabilities or 

psychiatric disabilities) but not cross-disability. 

Despite their small size and limited focus, 

these programs show enormous potential for 

serving parents with disabilities. With greater 

funding, programs similar to those discussed in 

this report can grow and develop nationwide, 

and adequately serve a currently underserved 

segment of the United States: parents with 

disabilities and their families. Additional 

funding will enable these programs to create 

systems that can consistently support families 

proactively rather than approaching intervention 

through child removal and other punitive 

measures.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 257
FINDING 18: The impact of disability on the 

integrity of American Indian/Alaskan Native 

(AI/AN) families has been utterly neglected by 

professionals in the fields of law, policy, and 

research. 

This issue has been neglected despite these 

communities having twice the disability rate 

of the general population and a history of 

government-sponsored removal of their children 

so severe that it prompted the creation of the 

Indian Child Welfare Act (ICWA).

Recommendations

■ Congress, the Administration, and federal agencies should fund the development of 

state multidisciplinary teams (MDTs) to support parents with disabilities and their 

children.

NCD recommends that multidisciplinary programs be established in each state. 

Moreover, funding must be available for MDTs to train and facilitate collaboration among 

relevant professional communities, systems, and organizations to increase regional 

capacity to serve parents with disabilities and their families. Further investigation 

is needed into how to use a more sustained and robust version of the 360 Project 

funding and development model, as well as requests for proposals, to achieve this 

goal preliminarily in 10–12 states while working toward a national system akin to the 

Healthy Start system in Australia. Ultimately, these projects should reflect the best of the 

promising practices highlighted here, with multidisciplinary, cross-disability and infant 

mental health features to maximize the well-being of children with parents who have 

disabilities. 

■ Congress, the Administration, and federal agencies should fund research to 

analyze existing policies, guidelines, performance standards, and data collection 

practices of national organizations serving parents with disabilities and their 

families.

NCD recommends that Congress, the Administration, and federal agencies fund research 

specifically to analyze the existing policies, guidelines, performance standards, and data 

collection practices of national organizations serving parents with disabilities and their 

families. 

258 National Council on Disability
Recommendations

■ The Health and Human Services Administration for Native Americans, ACF Native 

Affairs Work Group, and Intra-Departmental Council on Native American Affairs 

member agencies should create a task force to investigate and secure funding for 

research concerning the impact of disability on familial integrity in Indian Country.

NCD recommends that these interrelated entities coordinate to create a task force that 

could investigate the impact of parental and extended family caregiver disability and its 

associated legal and social implications for preserving AI/AN families; identify the barriers 

to conducting research with this population; and procure funding for such research. In 

many child welfare cases involving Native children, the parents have disabilities; the 

inability or unwillingness of child welfare systems to meaningfully accommodate these 

families represents an end-run around ICWA, defeating the spirit and the power of the 

legislation at a time of great peril for AI/AN communities. 

■ Pursuant to §805 of the Native Americans Program Act of 1975, this same task force 

should procure funding for pilot projects to develop supports for AI/AN parents and 

extended family caregivers with disabilities and thereby support family integrity in 

Indian Country.

NCD recommends that these interrelated entities coordinate to create a research task 

force that can investigate how best to develop the capacity to deliver the supports AI/

AN parents and extended family caregivers require to care for their children and prevent 

entry into the child welfare system. These supports should be delivered through existing 

tribal and urban Indian community programs or by developing new programs. The 

community supports that can prevent entry into the child welfare system or can support 

positive outcomes in these cases are not often present in reservation or urban Indian 

communities. Funding should be procured for a cross-disability, multidisciplinary model 

program similar to the AFC 360 initiative process to allow reservation and urban Indian 

communities to maximize their cultural and social relevance and take advantage of their 

deep understanding of the functioning of their own government and social service delivery 

systems. 

■ Grants and funding should be made available under the Indian Tribal Justice Technical 

and Legal Assistance Act of 2000 to support technical assistance and training for tribal 

courts that focuses on parents with disabilities and child welfare and custody cases. 

NCD recommends that the Bureau of Justice Assistance, as part of DOJ’s Indian Country 

Law Enforcement Initiative, create and administer grants to support the development 

and implementation of tribal legal services training and technical assistance to the court 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 259
FINDING 19: Federal legislation, similar to the 

Indian Child Welfare Act, must be enacted to 

address the systemically disparate treatment 

faced by parents with disabilities throughout 

the country.

To fully protect the rights of parents with 

disabilities, federal legislation akin to the ICWA 

must be enacted. While the ICWA is clearly not 

aimed at the disability community, the impetus 

for the ICWA arose from circumstances similar 

to those surrounding families with parents who 

have disabilities. Both Native Americans and 

people with disabilities are historically oppressed 

minorities who have been denied civil and 

human rights in this country. Both groups were 

systemically isolated from other sectors of 

society until midway through the last century. 

Both groups suffer extreme levels of poverty, and 

little is understood about their cultures, leading to 

stereotyping and discrimination. Most important, 

both groups have been subjected to involuntary 

sterilization programs and massive removals 

of their children. Lack of knowledge about the 

culture of Native American people and how they 

parent is very similar to lack of knowledge about 

the culture, adaptive equipment, supportive 

services, and strengths of the disability 

community and how people with disabilities 

parent. Because of this and the other similarities 

between the causes of custody loss in the 

two communities—such as poverty, illiteracy, 

bias, and discrimination—portions of the ICWA 

that provide remedy for the Native American 

community should be borrowed to strengthen 

new legislation to protect the children of parents 

with disabilities.

programs to enhance understanding in those tribal judicial systems regarding the capacity 

of parent and extended family caregivers with disabilities to safely and successfully care 

for minor children and the interplay of ADA and ICWA cases in state court proceedings 

involving their tribal citizens. This is important not only to support nonbiased outcomes 

in tribal courts, but to ensure that, where possible, they accept jurisdiction in cases 

where discrimination is occurring in state courts or have sufficient facility with this 

issue to withhold endorsement of “active efforts” by state child welfare entities where 

accommodation has not been provided. Existing disability and existing Native American 

child welfare organizations (including tribally administered organizations) should be 

encouraged to collaborate in submitting requests for proposals and developing projects 

to be funded. Existing Native American disability organizations can provide technical 

information and knowledge regarding parents with disabilities and how to support them 

in their own communities; outreach for RFPs should be directed to them. Long-standing 

organizations such as the Native American Independent Living Services (which serves AI/

AN people in New Mexico) and the Native American Disability Law Center (which works 

specifically with the tribal communities in the Southwest) represent different types of 

Native American disability programs and are well-positioned to assist both reservation and 

urban Indian communities. 

260 National Council on Disability
FINDING 20: The United Nations 

Convention on the Rights of Persons with 

Disabilities (CRPD) reinforces the rights 

of people with disabilities to create and 

maintain families.

The CRPD protects the rights of people with 

disabilities to create and maintain families in 

several Articles, particularly Articles 23 and 

25. Additionally, the CRPD reinforces the 

reproductive rights of women with disabilities.

Recommendation

■ Congress should address the disparate treatment experienced by parents with 

disabilities through legislation similar to the ICWA that will protect the rights of 

parents with disabilities and their families.

NCD recommends that Congress enact legislation similar to the ICWA, in accordance with 

the language set forth in Appendix C of this report, to protect the rights of parents with 

disabilities. Alternatively, legislative amendment of the ADA and other relevant federal acts 

governing child welfare, child custody, adoption, and assisted reproductive technologies 

will be necessary to advance the intention of the ADA at the national level. 

Recommendation

■ The United States should ratify the CRPD.

NCD recommends that the Senate consider and expeditiously provide its advice and 

consent to ratification of the CRPD. U.S. ratification of the CRPD would reinforce American 

leadership in disability rights and support American efforts to promote the rights of parents 

with disabilities around the world.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 261
262 National Council on Disability
Iren Ahlund, FUB, the Swedish Association for People with Learning Difficulties

Adrienne Asch, PhD, Director, Center for Ethics, Yeshiva University

Dara Baldwin, MPA, Policy Analyst, National Council on Independent Living

Hanna Björg Sigurjónsdóttir, PhD, Chair of Department and Vice Director of the Center for Disability 

Studies, School of Social Sciences, University of Iceland

Kelly Buckland, Executive Director, National Council on Independent Living

Olegario “Ollie” D. Cantos VII, National Disability Rights Activist 

Ruth Colker, JD, Professor and Heck Faust Memorial Chair in Constitutional Law, Moritz College of Law

Marc Fagan, PsyD, Associate Director, Thresholds

Diane Garreau, Director, Cheyenne River Sioux Indian Child Welfare Program Emergency Children’s Shelter

Bernadette Irwin, Assistant Department Director, Kennedy Krieger Institute, Family Support Services, 

and Co-president of the Association for Successful Parenting

Susan Jones, Director of Positive Parenting, United Arc of Franklin and Hampshire Counties, and Copresident of the Association for Successful Parenting

Katherine Kaplan, MSEd, Assistant Director, Temple University Collaborative on Community Inclusion of 

Individuals with Psychiatric Disabilities

Megan Kirshbaum, PhD, Founder and Executive Director, Through the Looking Glass, and Co-director of 

the National Center for Parents with Disabilities and Their Families

Traci LaLiberte, PhD, Executive Director, Center for Advanced Studies in Child Welfare, School of Social 

Work, University of Minnesota

Elizabeth Lightfoot, PhD, Associate Professor and Director of the Doctoral Program, School of Social 

Work, University of Minnesota 

Jennifer Mathis, Deputy Legal Program Director, Bazelon Center for Mental Health Law

David McConnell, PhD, Professor of Occupational Therapy, Faculty of Rehabilitation Medicine, 

University of Alberta, Canada 

Andrew Philips, JD, Staff Attorney, National Association of the Deaf

Mary Trimble Norris, Director, American Indian Child Resource Center 

Anita Silvers, PhD, Professor and Chair of Philosophy Department, San Francisco State University

Deborah Kent Stein, Chair, Blind Parents Interest Group of the National Federation of the Blind

Susan Yuan, PhD, Associate Director, Center for Disability and Community Inclusion, University of Vermont

Appendix A. Intervie

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 263
264 National Council on Disability
State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Alabama Yes

X

X

X Ala.Code 1975 § 12-15-319 (2009)

(a) If the juvenile court finds from clear and convincing evidence, competent, material, and relevant in nature, that the parents of a child are unable or unwilling to discharge their responsibilities to and for the child, or that the conduct or condition of the parents renders them unable to properly care for the child and that the conduct or condition is unlikely to change in the foreseeable future, it may terminate the parental rights of the parents. In determining whether or not the parents are unable or unwilling to discharge their responsibilities to and for the child and to terminate the parental rights, the juvenile court shall consider the following factors including, but not limited to, the following:

Appendix B.  State-By-State Analysis of Dependency Statutes a

Their Inclusion of Disability

Adapted from Elizabeth Lightfoot, Katharine Hill, and Traci LaLiberte, “The Inclusion of Disability as a Condition for Termination of Parental Rights,” Child Abuse and Neglect 34 (2010): 927–934.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 265
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(2) Emotional illness, mental illness, or mental deficiency of the parent, or excessive use of alcohol or controlled substances, of a duration or nature as to render the parent unable to care for needs of the child.

Alaska Yes

X

X

X AK ST § 47.10.011 (1998)

Subject to AS 47.10.019, the court may find a child to be a child in need of aid if it finds by a preponderance of the evidence that the child has been subjected to any of the following:(11) the parent, guardian, or custodian has a mental illness, serious emotional disturbance, or mental deficiency of a nature and duration that places the child at substantial risk of physical harm or mental injury.AK ST § 47.10.088 (2008)(a) Except as provided in AS 47.10.080(o), the rights and responsibilities of the parent regarding the child may be terminated for purposes of freeing a child for adoption or other permanent placement if the court finds by clear and convincing evidence that(1) the child has been subjected to conduct or conditions described in AS 47.10.011.

266 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Arizona Yes

X

X A.R.S. § 8-533 (2011)

B. Evidence sufficient to justify the termination of the parent-child relationship shall include any one of the following, and in considering any of the following grounds, the court shall also consider the best interests of the child:3. That the parent is unable to discharge parental responsibilities because of mental illness, mental deficiency or a history of chronic abuse of dangerous drugs, controlled substances or alcohol and there are reasonable grounds to believe that the condition will continue for a prolonged indeterminate period.

Arkansas Yes

X

X

X A.C.A. § 9-27-341 (2011)

(b)(3) An order forever terminating parental rights shall be based upon a finding by clear and convincing evidence:(B) Of one (1) or more of the following grounds:(vii)(a) That other factors or issues arose subsequent to the filing of the original petition for dependency-neglect that demonstrate that return of the juvenile to the custody of the parent is contrary to the juvenile’s health, safety, or welfare and that, despite the offer of appropriate family services, the parent has manifested the incapacity or indifference to remedy the

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 267
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

subsequent issues or factors or rehabilitate the parent’s circumstances that prevent return of the juvenile to the custody of the parent.(b) The department shall make reasonable accommodations in accordance with the Americans with Disabilities Act of 1990, 42 U.S.C. § 12101 et seq., to parents with disabilities in order to allow them meaningful access to reunification and family preservation services.(c) For purposes of this subdivision (b)(3)(B)(vii), the inability or incapacity to remedy or rehabilitate includes, but is not limited to, mental illness, emotional illness, or mental deficiencies.

California Yes

X

X Cal.Welf. & Inst.Code § 361.5 (2011)

(a) Except as provided in subdivision (b), or when the parent has voluntarily relinquished the child and the relinquishment has been filed with the State Department of Social Services, or upon the establishment of an order of guardianship pursuant to Section 360, whenever a child is removed from a parent’s or guardian’s custody, the juvenile court shall order the social worker to provide child welfare services to the child and the child’s mother

268 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

and statutorily presumed father or guardians. Upon a finding and declaration of paternity by the juvenile court or proof of a prior declaration of paternity by any court of competent jurisdiction, the juvenile court may order services for the child and the biological father, if the court determines that the services will benefit the child.(b) Reunification services need not be provided to a parent or guardian described in this subdivision when the court finds, by clear and convincing evidence, any of the following:(2) That the parent or guardian is suffering from a mental disability that is described in Chapter 2 (commencing with Section 7820) of Part 4 of Division 12 of the Family Code and that renders him or her incapable of utilizing those services.Cal.Fam.Code § 7827 (2002)(a) “Mentally disabled” as used in this section means that a parent or parents suffer a mental incapacity or disorder that renders the parent or parents unable to care for and control the child adequately.

Colorado Yes

X

X

X C.R.S.A. § 19-3-604 (2008)

(1) The court may order a termination of the parent-child legal relationship upon the finding by clear and convincing evidence of any one of the following:

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 269
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(b) That the child is adjudicated dependent or neglected and the court finds that no appropriate treatment plan can be devised to address the unfitness of the parent or parents. In making such a determination, the court shall find one of the following as the basis for unfitness:(I) Emotional illness, mental illness, or mental deficiency of the parent of such duration or nature as to render the parent unlikely within a reasonable time to care for the ongoing physical, mental, and emotional needs and conditions of the child.

Connecticut No C.G.S.A. § 17a-112 (2006)Delaware Yes

X

X 13 Del.C. § 1103 (2009)

(a) The procedure for termination of parental rights for the purpose of adoption or, if a suitable adoption plan cannot be effected, for the purpose of providing for the care of the child by some other plan which may or may not contemplate the continued possibility of eventualadoption, may be initiated whenever it appears to be in the child’s best interest and that 1 or more of the following grounds exist:(3) The parent or parents of the child or any person or persons holding parental rights over such child are found by the Court to be mentally incompetent and, from evidence of 2 qualified 

270 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

psychiatrists selected by the Court, found to be unable to discharge parental responsibilities in the foreseeable future. The Court shall appoint a licensed attorney as guardian ad litem to represent the alleged incompetent in the proceeding.13 Del.C. § 1101 (2000)(9) “Mentally incompetent” shall be interpreted as referring to a parent who is unable to discharge parental responsibilities by reason of mental illness, psychopathology, mental retardation or mental deficiency.

District of Columbia

Yes

X

X

X DC ST § 16-2353 (1999)

(a) A judge may enter an order for the termination of the parent and child relationship when the judge finds from the evidence presented, after giving due consideration to the interests of all parties, that the termination is in the best interests of the child.(b) In determining whether it is in the child’s best interests that the parent and child relationship be terminated, a judge shall consider each of the following factors:(2) the physical, mental and emotional health of all individuals involved to the degree that such affects the welfare of the child, the decisive consideration being the physical, mental and emotional needs of the child.

Florida No F.S.A. § 39.806 (2009)

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 271
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Georgia Yes

X

X

X

X Ga. Code Ann., § 15-11-94 (2004)

(a) In considering the termination of parental rights, the court shall first determine whether there is present clear and convincing evidence of parental misconduct or inability as provided in subsection (b) of this Code section. If there is clear and convincing evidence of such parental misconduct or inability, the court shall then consider whether termination of parental rights is in the best interest of the child, after considering the physical, mental, emotional, and moral condition and needs of the child who is the subject of the proceeding, including the need for a secure and stable home. If the court finds clear and convincing evidence of the circumstance provided in paragraph (5) of subsection (b) of this Code section, the court shall presume that termination of parental rights is in the best interest of the child.(b) Except as provided in subsections (e) through (h) of Code Section 15-11-96, the court by order may terminate the parental rights of a parent with respect to the parent’s child if:

272 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(4)(B) In determining whether the child is without proper parental care and control, the court shall consider, without being limited to, the following:(i) A medically verifiable deficiency of the parent’s physical, mental, or emotional health of such duration or nature as to render the parent unable to provide adequately for the physical, mental, emotional, or moral condition and needs of the child;(ii) Excessive use of or history of chronic unrehabilitated abuse of intoxicating liquors or narcotic or dangerous drugs or controlled substances with the effect of rendering the parent incapable of providing adequately for the physical, mental, emotional, or moral condition and needs of the child.

Hawaii Yes

X

X HRS § 571-61 (2011)

(b) Involuntary termination.(1) The family courts may terminate the parental rights in respect to any child as to any legal parent:(F) Who is found by the court to be mentally ill or intellectually disabled and incapacitated from giving consent to the adoption of or from providing now and in the foreseeable future the care necessary for the well-being of the child.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 273
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Idaho No I.C. § 16-2005 (2005)Illinois Yes

X

X 750 ILCS 50/1 (2011)

§ 1. Definitions. When used in this Act, unless the context otherwise requires:D. “Unfit person” means any person whom the court shall find to be unfit to have a child, without regard to the likelihood that the child will be placed for adoption. The grounds of unfitness are any one or more of the following, except that a person shall not be considered an unfit person for the sole reason that the person has relinquished a child in accordance with the Abandoned Newborn Infant Protection Act:(p) Inability to discharge parental responsibilities supported by competent evidence from a psychiatrist, licensed clinical social worker, or clinical psychologist of mental impairment, mental illness or an intellectual disability as defined in Section 1-116 of the Mental Health and Developmental Disabilities Code, or developmental disability as defined in Section 1-106 of that Code, and there is sufficient justification to believe that the inability to discharge parental responsibilities shall extend beyond a reasonable time period. However, this subdivision (p) shall not be construed so as to permit a licensed clinical social worker to conduct any medical diagnosis to determine mental illness or mental impairment.

274 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

705 ILCS 405/1-2 (1998)(1) The purpose of this Act is to secure for each minor subject hereto such care and guidance, preferably in his or her own home, as will serve the safety and moral, emotional, mental, and physical welfare of the minor and the best interests of the community; to preserve and strengthen the minor’s family ties whenever possible, removing him or her from the custody of his or her parents only when his or her safety or welfare or the protection of the public cannot be adequately safeguarded without removal; if the child is removed from the custody of his or her parent, the Department of Children and Family Services immediately shall consider concurrent planning, as described in Section 5 of the Children and Family Services Act so that permanency may occur at the earliest opportunity; consideration should be given so that if reunification fails or is delayed, the placement made is the best available placement to provide permanency for the child; and, when the minor is removed from his or her own family, to secure for him or her custody, care and discipline as nearly as possible equivalent to that which should

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 275
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

be given by his or her parents, and in cases where it should and can properly be done to place the minor in a family home so that he or she may become a member of the family by legal adoption or otherwise. Provided that a ground for unfitness under the Adoption Act can be met, it may be appropriate to expedite termination of parental rights:(c) in those extreme cases in which the parent’s incapacity to care for the child, combined with an extremely poor prognosis for treatment or rehabilitation, justifies expedited termination of parental rights.

Indiana No IC 31-35-2-4 (2010)Iowa Yes

X I.C.A. § 232.116 (2011)

1. Except as provided in subsection 3, the court may order the termination of both the parental rights with respect to a child and the relationship between the parent and the child on any of the following grounds:k. The court finds that all of the following have occurred:(2) The parent has a chronic mental illness and has been repeatedly institutionalized for mental illness, and presents a danger to self or others as evidenced by prior acts.

276 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Kansas Yes

X

X

X

X K.S.A. 38-2269 (2008)

(a) When the child has been adjudicated to be a child in need of care, the court may terminate parental rights or appoint a permanent custodian when the court finds by clear and convincing evidence that the parent is unfit by reason of conduct or condition which rendersthe parent unable to care properly for a child and the conduct or condition is unlikely to change in the foreseeable future.(b) In making a determination of unfitness the court shall consider, but is not limited to, the following, if applicable:(1) Emotional illness, mental illness, mental deficiency or physical disability of the parent, of such duration or nature as to render the parent unable to care for the ongoing physical, mental and emotional needs of the child.

Kentucky Yes

X

X KRS Section 625.090 (2000)

(3) In determining the best interest of the child and the existence of a ground for termination, the Circuit Court shall consider the following factors: (a) Mental illness as defined by KRS 202A.011(9), or mental retardation as defined by KRS 202B.010(9) of

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 277
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

the parent as certified by a qualified mental health professional, which renders the parent consistently unable to care for the immediate and ongoing physical or psychological needs of the child for extended periods of time.KRS Section 202A.011 (9) (2005)Mentally ill person means a person with substantially impaired capacity to use selfcontrol, judgment or discretion in the conduct of the person’s affairs and social relations, associated with maladaptive behavior or recognized emotional symptoms where impaired capacity, maladaptive behavior, or emotional symptoms can be related to physiological, psychological or social factors. KRS Section 202B.010 (9) (2005)Mentally retarded person means a person with significantly sub-average general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period.

Louisiana No LSA-Ch.C. Art. 1015 (2004)

[Only mention of disability]: The grounds for termination of parental rights are: (i) abuse or neglect which is chronic, life threatening, or results in gravely disabling physical or psychological injury or disfigurement.

278 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Maine No Chronic 

substance 

abuse 

problem

22 M.R.S.A. § 4055 1-A (2009)The court may presume that the parent is unwilling or unable to protect the child from jeopardy and these circumstances are unlikely to change within a time which is reasonably calculated to meet the child’s needs if: (C) The child has been placed in the legal custody or care of the department, the parent has a chronic substance abuse problem, and the parent’s prognosis indicates that the child will not be able to return to the custody of the parent within a reasonable period of time, considering the child’s age and the need for a permanent home. The fact that a parent has been unable to provide safe care of a child for a period of 9 months due to substance abuse constitutes a chronic substance abuse problem

Maryland Yes

X

X

X

X MD Code, Family Law, § 5-323 (d) (2009)

Except as provided in subsection (c) of this section, in ruling on a petition for guardianship of a child, a juvenile court shall give primary consideration to the health and safety of the child and consideration to all other factors needed to determine whether terminating a parent’s rights is in the child’s best interests, including: (iii) the existence of a parental disability that makes the parent consistently unable to care

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 279
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

for the child’s immediate and ongoing physical or psychological needs for long periods of time; and(iv) whether additional services would be likely to bring about a lasting parental adjustment so that the child could be returned to the parent within an ascertainable time not to exceed 18 months from the date of placement unless the juvenile court makes a specific finding that it is in the child’s best interests to extend the time for a specified period;

Massachusetts Yes

X

X Alcohol 

or drug 

addiction

M.G.L.A. 210 § 3 (2008)(c) In considering the fitness of the child’s parent or other person named in section 2, the court shall consider, without limitation, the following factors: (xii) a condition which is reasonably likely to continue for a prolonged, indeterminate period, such as alcohol or drug addiction, mental deficiency or mental illness, and the condition makes the parent or other person named in section 2 unlikely to provide minimally acceptable care of the child;

Michigan No M.C.L.A. 712A.19b (2010)Minnesota No Chemical 

dependency

M.S.A. § 260C.301 (2010)The juvenile court may upon petition, terminate all rights of a parent to a child: (b) if it finds that one or more of the following conditions exist:

280 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(5) that following the child’s placement out of the home, reasonable efforts, under the direction of the court, have failed to correct the conditions leading to the child’s placement. It is presumed that reasonable efforts under this clause have failed upon a showing that: (iv) reasonable efforts have been made by the social services agency to rehabilitate the parent and reunite the family. It is also presumed that reasonable efforts have failed under this clause upon a showing that:(A) the parent has been diagnosed as chemically dependent by a professional certified to make the diagnosis;(B) the parent has been required by a case plan to participate in a chemical dependency treatment program;(C) the treatment programs offered to the parent were culturally, linguistically, and clinically appropriate;(D) the parent has either failed two or more times to successfully complete a treatment program or has refused at two or more separate meetings with a caseworker to participate in a treatment program; and(E) the parent continues to abuse chemicals.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 281
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Mississippi Yes

X

X

X Miss. Code Ann. § 93-15-103 (3) (2003) 

Grounds for termination of parental rights shall be based on one or more of the following factors: (e) The parent exhibits ongoing behavior which would make it impossible to return the child to the parent’s care and custody:(i) Because the parent has a diagnosable condition unlikely to change within a reasonable time such as alcohol or drug addiction, severe mental deficiencies or mental illness, or extreme physical incapacitation, which condition makes the parent unable to assume minimally, acceptable care of the child;

Missouri Yes

X

X Chemical 

dependency

V. A. M. S. 211.477 (2003)5. The juvenile officer or the division may file a petition to terminate the parental rights of the child’s parent when it appears that one or more of the following grounds for termination exist:(2) The child has been abused or neglected. In determining whether to terminate parental rights pursuant to this subdivision, the court shall consider and make findings on the following conditions or acts of the parent:(a) A mental condition which is shown by competent evidence either to be permanent or such that there is no reasonable likelihood

282 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

that the condition can be reversed and which renders the parent unable to knowingly provide the child the necessary care, custody and control;(b) Chemical dependency which prevents the parent from consistently providing the necessary care, custody and control of the child and which cannot be treated so as to enable the parent to consistently provide such care, custody and control; ... Nothing in this subdivision shall be construed to permit discrimination on the basis of disability or disease; 10. The disability or disease of a parent shall not constitute a basis for a determination that a child is a child in need of care, for the removal of custody of a child from the parent, or for the termination of parent rights without a specific showing that there is a causal relation between the disability or disease and harm to the child.

Montana Yes

X

X

X MCA 41-3-609 (1) (2005)

The court may order a termination of the parent-child legal relationship upon a finding established by clear and convincing evidence, except as provided in the federal Indian Child Welfare Act, if applicable, that any of the following circumstances exist: (f) the child is an adjudicated youth in need of care and both of the following exist:

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 283
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(i) an appropriate treatment plan that has been approved by the court has not been complied with by the parents or has not been successful; and(ii) the conduct or condition of the parents rendering them unfit is unlikely to change within a reasonable time. (2) In determining whether the conduct or condition of the parents is unlikely to change within a reasonable time, the court shall enter a finding that continuation of the parentchild legal relationship will likely result in continued abuse or neglect or that the conduct or the condition of the parents renders the parents unfit, unable, or unwilling to give the child adequate parental care. In making the determinations, the court shall consider but is not limited to the following:(a) emotional illness, mental illness, or mental deficiency of the parent of a duration or nature as to render the parent unlikely to care for the ongoing physical, mental, and emotional needs of the child within a reasonable time;

Nebraska Yes

X

X Habitual 

use of 

intoxicating 

liquor or 

narcotic 

drugs

Neb.Rev.St. § 43-292 (2009) The court may terminate all parental rights between the parents or the mother of a juvenile born out of wedlock and such juvenile when the court finds such action to be in the best

284 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

interests of the juvenile and it appears by the evidence that one or more of the following conditions exist: (4) The parents are unfit by reason of debauchery, habitual use of intoxicating liquor or narcotic drugs, or repeated lewd and lascivious behavior, which conduct is found by the court to be seriously detrimental to the health, morals, or well-being of the juvenile;(5) The parents are unable to discharge parental responsibilities because of mental illness or mental deficiency and there are reasonable grounds to believe that such condition will continue for a prolonged indeterminate period;

Nevada Yes

X

X

X N.R.S. 128.105, (1999) – [General statute on 

the termination of parental rights grounds—no language]N.R.S. 128.106 (2005)- [Specific considerations in determining neglect and unfitness]In determining neglect by or unfitness of a parent, the court shall consider, without limitation, the following conditions which may diminish suitability as a parent:1. Emotional illness, mental illness or mental deficiency of the parent which renders the parent consistently unable to care for the immediate and continuing physical or psychological needs of the child for extended periods of time.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 285
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

New Hampshire

Yes

X

X N.H. Rev. Stat. § 170-C:5 (2005)

The petition may be granted where the court finds that one or more of the following conditions exist: IV. Because of mental deficiency or mental illness, the parent is and will continue to be incapable of giving the child proper parental care and protection for a longer period of time than would be wise or prudent to leave the child in an unstable or impermanent environment. Mental deficiency or mental illness shall be established by the testimony of either 2 licensed psychiatrists or clinical psychologists or one of each acting together.

New Jersey Yes

X N.J.S.A. 9:2-19 (1990)

(f) If the court shall determine that custody of the child has been surrendered as provided in Article II of this act, the court may declare that the person making such surrender shall have no further right to custody of the child. If the court shall determine that a parent of the child is dead, or mentally incompetent, or has forsaken parental obligation, the court may declare that such parent shall have no further right to custody of the child.

286 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

New Mexico Yes

X

X

X N. M. S. A. 1978, § 32A-4-28 (2005) 

A. In proceedings to terminate parental rights, the court shall give primary consideration to the physical, mental and emotional welfare and needs of the child, including the likelihood of the child being adopted if parental rights are terminated.B. The court shall terminate parental rights with respect to a child when: (2) the child has been a neglected or abused child as defined in the Abuse and Neglect Act and the court finds that the conditions and causes of the neglect and abuse are unlikely to change in the foreseeable future despite reasonable efforts by the department or other appropriate agency to assist the parent in adjusting the conditions that render the parent unable to properly care for the child. The court may find in some cases that efforts by the department or another agency are unnecessary, when:(a) there is a clear showing that the efforts would be futile; or(b) the parent has subjected the child to aggravated circumstances; or(3) the child has been placed in the care of others, including care by other relatives, either

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 287
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

by a court order or otherwise and the following conditions exist:(a) the child has lived in the home of others for an extended period of time;(b) the parent-child relationship has disintegrated;(c) a psychological parent-child relationship has developed between the substitute family and the child;(d) if the court deems the child of sufficient capacity to express a preference, the child no longer prefers to live with the natural parent;(e) the substitute family desires to adopt the child; and(f) a presumption of abandonment created by the conditions described in Subparagraphs (a) through (e) of this paragraph has not been rebutted.N. M. S. A. 1978, § 32A-4-2 (2009)As used in the Abuse and Neglect Act:E. “neglected child” means a child: (4) whose parent, guardian or custodian is unable to discharge that person’s responsibilities to and for the child because of incarceration, hospitalization or physical or mental disorder or incapacity;

288 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

N. M. S. A. 1978, § 32A-4-29 (2009) G. When a child has been in foster care for not less than fifteen of the previous twenty-two months, the department shall file a motion to terminate parental rights, unless:(4) a parent is terminally ill, but in remission, and does not want parental rights to be terminated; provided that the parent has designated a guardian for the child;

New York Yes

X

X NY SOC SERV § 384-b (2010)

4. An order committing the guardianship and custody of a child pursuant to this section shall be granted only upon one or more of the following grounds: (c) The parent or parents, whose consent to the adoption of the child would otherwise be required in accordance with section one hundred eleven of the domestic relations law, are presently and for the foreseeable future unable, by reason of mental illness or mental retardation, to provide proper and adequate care for a child who has been in the care of an authorized agency for the period of one year immediately prior to the date on which the petition is filed in the court;

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 289
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

6. (a) For the purposes of this section, “mental illness” means an affliction with a mental disease or mental condition which is manifested by a disorder or disturbance in behavior, feeling, thinking or judgment to such an extent that if such child were placed in or returned to the custody of the parent, the child would be in danger of becoming a neglected child as defined in the family court act.(b) For the purposes of this section, “mental retardation” means sub-average intellectual functioning which originates during the developmental period and is associated with impairment in adaptive behavior to such an extent that if such child were placed in or returned to the custody of the parent, the child would be in danger of becoming a neglected child as defined in the family court act.(c) The legal sufficiency of the proof in a proceeding upon the ground set forth in paragraph (c) of subdivision four of this section shall not be determined until the judge has taken the testimony of a psychologist, or psychiatrist, in accordance with paragraph (e) of this subdivision.(d) A determination or order upon a ground set forth in paragraph (c) of subdivision four shall in no way affect any other right, or constitute an adjudication of the legal status of the parent.

290 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(e) In every proceeding upon a ground set forth in paragraph (c) of subdivision four the judge shall order the parent to be examined by, and shall take the testimony of, a qualified psychiatrist or a psychologist licensed pursuant to article one hundred fifty-three of the education law as defined in section 730.10 of the criminal procedure law in the case of a parent alleged to be mentally ill or retarded, such psychologist or psychiatrist to be appointed by the court pursuant to section thirty-five of the judiciary law. The parent and the authorized agency shall have the right to submit other psychiatric, psychological or medical evidence. If the parent refuses to submit to such court-ordered examination, or if the parent renders himself unavailable therefore whether before or after the initiation of a proceeding under this section, by departing from the state or by concealing himself therein, the appointed psychologist or psychiatrist, upon the basis of other available information, including, but not limited to, agency, hospital or clinic records, may testify without an examination of such parent, provided that such other information affords a reasonable basis for his opinion.

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 291
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

North Carolina

Yes

X

X Substance 

abuse

N.C.G.S.A. § 7B-1111(2007)(a) The court may terminate the parental rights upon a finding of one or more of the following: (6) That the parent is incapable of providing for the proper care and supervision of the juvenile, such that the juvenile is a dependent juvenile within the meaning of G.S. 7B-101, and that there is a reasonable probability that such incapability will continue for the foreseeable future. Incapability under this subdivision may be the result of substance abuse, mental retardation, mental illness, organic brain syndrome, or any other cause or condition that renders the parent unable or unavailable to parent the juvenile and the parent lacks an appropriate alternative child care arrangement.

North Dakota

Yes

X

X

X

X Other illness 

or disability

ND ST § 27-20-02(d) [A deprived child is defined as one who] is without proper parental care, control, or education as required by law, or other care and control necessary for the child’s well-being because of the physical, mental, emotional, or other illness or disability of the child’s parent or parents, and that such lack of care is not due to a willful act of commission or act of omission by the child’s parents, and care is requested by a parent;

292 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

ND ST § 27-20-44(1) The court by order may terminate the parental rights of a parent with respect to the parent’s child if: (c) The child is a deprived child...

Ohio Yes

X

X

X

X Chemical 

dependency

OH R.C. § 2151.414A.(2) If all of the following apply, permanent custody is in the best interest of the child...: (a) The court determines by clear and convincing evidence that one or more of the factors in division (E) of this section exist... (E) (2) Chronic mental illness, chronic emotional illness, mental retardation, physical disability, or chemical dependency of the parent that is so severe that it makes the parent unable to provide an adequate permanent home for the child...

Oklahoma Yes

X

X

X

X 10A Okl.St.Ann. § 1-4-90413

A finding that all of the following exist:(a) the parent has a diagnosed cognitive disorder, an extreme physical incapacity, or a medical condition, including behavioral health which renders the parent incapable of adequately and appropriately exercising parental rights, duties, and responsibilities within a reasonable time considering the age of the child, and (b) allowing the parent to have custody would cause the child actual harm or harm in the near future. 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 293
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

A parent’s refusal or pattern of noncompliance with treatment, therapy, medication, or assistance from outside the home can be used as evidence that the parent is incapable of adequately and appropriately exercising parental rights, duties, and responsibilities.A finding that a parent has a diagnosed cognitive disorder, an extreme physical incapacity, or a medical condition, including behavioral health or substance dependency shall not in and of itself deprive the parent of parental rights.

Oregon NoPennsylvania NoRhode Island NoSouth Carolina

Yes

X

X

X Alcohol 

or drug 

addiction

Code 1976 § 63-7-2570The family court may order the termination of parental rights upon a finding of one or more of the following grounds and a finding that termination is in the best interest of the child:(6) The parent has a diagnosable condition unlikely to change within a reasonable time including, but not limited to, alcohol or drug addiction, mental deficiency, mental illness, or extreme physical incapacity, and the condition makes the parent unable or unlikely to 

294 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

provide minimally acceptable care of the child. It is presumed that the parent’s condition is unlikely to change within a reasonable time upon proof that the parent has been required by the department or the family court to participate in a treatment program for alcohol or drug addiction, and the parent has failed two or more times to complete the program successfully or has refused at two or more separate meetings with the department to participate in a treatment program.

South Dakota

No

Tennessee Yes

X

X

X T.C.A. § 36-1-113

(8)(A) The chancery and circuit courts shall have jurisdiction in an adoption proceeding, and the chancery, circuit, and juvenile courts shall have jurisdiction in a separate, independent proceeding conducted prior to an adoption proceeding to determine if the parent or guardian is mentally incompetent to provide for the further care and supervision of the child, and to terminate that parent’s or guardian’s rights to the child; (B) The court may terminate the parental or guardianship rights of that person if it determines on the basis of clear and convincing evidence that: 

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 295
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(i) The parent or guardian of the child is incompetent to adequately provide for the further care and supervision of the child because the parent’s or guardian’s mental condition is presently so impaired and is so likely to remain so that it is unlikely that the parent or guardian will be able to assume or resume the care of and responsibility for the child in the near future; and (ii) That termination of parental or guardian rights is in the best interest of the child; (C) In the circumstances described under subdivisions (8)(A) and (B), no willfulness in the failure of the parent or guardian to establish the parent’s or guardian’s ability to care for the child need be shown to establish that the parental or guardianship rights should be terminated;

Texas Yes

X

X

X V.T.C.A., Family Code § 161.003

(a) The court may order termination of the parent-child relationship in a suit filed by the Department of Protective and Regulatory Services if the court finds that:(1) the parent has a mental or emotional illness or a mental deficiency that renders the parent unable to provide for the physical, emotional, and mental needs of the child; 

296 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

(2) the illness or deficiency, in all reasonable probability, proved by clear and convincing evidence, will continue to render the parent unable to provide for the child’s needs until the 18th birthday of the child;

Utah Yes* U.C.A. 1953 § 78A-6-507

(1) The court may terminate all parental rights with respect to a parent if the court finds any one of the following: (c) that the parent is unfit or incompetent[The language is so vague it could mean any disability, but none is stated directly.]

Vermont NoVirginia Yes

X

X

X VA Code Ann § 16.1-283

(A) The residual parental rights of a parent or parents may be terminated by the court as hereinafter provided in a separate proceeding if the petition specifically requests such relief... (a) The parent or parents are suffering from a mental or emotional illness or mental deficiency of such severity that there is no reasonable expectation that such parent will be able to undertake responsibility for the care needed by the child in accordance with his age and stage of development;

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 297
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

Washington Yes

X

X West’s RCWA § 13.34.180

(1) A petition seeking termination of a parent and child relationship may be filed in juvenile court by any party to the dependency proceedings concerning that child. (e) That there is little likelihood that conditions will be remedied so that the child can be returned to the parent in the near future...In determining whether the conditions will be remedied the court may consider, but is not limited to, the following factors: (ii) Psychological incapacity or mental deficiency of the parent that is so severe and chronic as to render the parent incapable of providing proper care for the child for extended periods of time or for periods of time that present a risk of imminent harm to the child, and documented unwillingness of the parent to receive and complete treatment or documentation that there is no treatment that can render the parent capable of providing proper care for the child in the near future....

West Virginia

Yes

X

X

X W. VA. Code § 49-6-5

(a) Following a determination pursuant to section two of this article wherein the court finds a child to be abused or neglected, the department shall file with the court a copy

298 National Council on Disability
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

of the child’s case plan, including the permanency plan for the child.... The court shall give precedence to dispositions in the following sequence:...(6) Upon a finding that there is no reasonable likelihood that the conditions of neglect or abuse can be substantially corrected in the near future and, when necessary for the welfare of the child, terminate the parental, custodial and guardianship rights and responsibilities of the abusing parent...(b) As used in this section, “no reasonable likelihood that conditions of neglect or abuse can be substantially corrected” shall mean that...(6) The abusing parent or parents have incurred emotional illness, mental illness or mental deficiency of such duration or nature as to render such parent or parents incapable of exercising proper parenting skills or sufficiently improving the adequacy of such skills.

Wisconsin Yes

X

X

X W.S.A. § 48.415

(3) Continuing parental disability. Continuing parental disability, which shall be established by proving that: (a) The parent is presently, and for a cumulative total period of at least 2 years within the 5 years immediately prior to the filing of the petition has been, an inpatient at

(continued)

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 299
Appendix B. (continued)

State

Disability 

as Grounds 

for Termination of 

Parental 

Rights

Intellectual 

or Developmental 

Disability

Mental Illness Emotional Disability Physical Disability Other Citation and Language

one or more hospitals... (c) licensed treatment facilities ...or state treatment facilities...on account of mental illness...or...developmental disability...or other like incapacities...; (b) The condition of the parent is likely to continue indefinitely; and (c) The child is not being provided with adequate care by a relative who has legal custody of the child, or by a parent or a guardian.

Wyoming No -

300 National Council on Disability
AN ACT TO PRESERVE FAMILIES THAT 

INCLUDE A PARENT WITH A DISABILITY 

(a) Findings

Congress finds that—

(1) a primary motivation in enactment of the 

Americans with Disabilities Act (ADA) was to 

end the subjection of people with disabilities to 

eugenics-inspired policies during the 20th century 

that deprived them of their fundamental right to 

procreate and raise their children; 

(2) in enacting the ADA, Congress sought to 

“provide a clear and comprehensive national 

mandate for the elimination of discrimination 

against individuals with disabilities”;

(3) while Congress expected that the 

Americans with Disabilities Act, and the 

regulations promulgated thereunder, would 

protect the 14th Amendment rights of individuals 

with disabilities to procreate and raise children, 

and the right of those children to be free from 

discrimination based on their association with 

a person with a disability (their parent), that 

expectation has not been fulfilled;

(4) 37 of the 50 states have promulgated child 

welfare statutes codifying parental disability as a 

separate and distinct basis upon which the state 

may seize and detain children and terminate 

parental rights; and child custody laws, using 

the best interest of the child standard, regularly 

deny parents’ custody of a child on the basis of 

parental disability, with little or no evidence of a 

nexus between disability and detriment to the 

child;

(5) the holding in In re Christina A., 261 Cal.

Rptr. 903 (Cal. Ct. App. 1989) that disability-based 

exceptions to the due process requirements for 

reunification services in child welfare cases are 

constitutional and do not violate due process or 

equal protection and are not vague;

(6) the holding in In re Doe, 100 Haw. 335 

(2002) that the Americans with Disabilities Act is 

never a defense to termination of parental rights;

(7) the holding in Adams v. Monroe County 

Dept. of Social Services, 21 F.Supp.2d 235 

(W.D.N.Y. 1998) that totally unregulated discretion 

is vested with adoption agencies to determine 

whether a prospective parent’s disability is a 

legitimate barrier to adoption;

(8) that the states, exercising their recognized 

jurisdiction over child custody proceedings 

through administrative and judicial bodies, 

have often failed to provide accommodation 

as required pursuant to the ADA, while 

implementing and upholding invidious 

classification;

(9) as a result, an alarming number of 

families are unnecessarily broken up by the 

loss of custody or parental rights, and many 

prospective parents with disabilities are unable 

to build families through assisted reproductive 

Appendix C. Model Legislation (State or Federa

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 301
technologies or adoption, based largely on the 

disability of the parent or prospective parent; 

(b) Purposes

The purpose of this act is—

(1) to protect the best interests of children 

parented by people with disabilities by preserving 

their families, and to protect the rights of people 

with disabilities to procreate and raise children, 

through the establishment of minimum standards 

requiring adherence to the ADA and respect 

for the due process and equal protection rights 

of this population of parents in the context of 

child welfare, family law, adoption, and probate 

guardianship cases. 

§ _____. Definitions 

As used in this chapter:

(1) “adaptive parenting equipment” 

includes any piece of equipment or any item 

that is used to increase, maintain, or improve 

the parenting capabilities of a parent with a 

disability.

(A) acquisition or modification of such 

equipment or devices.

(2) “adaptive techniques” are defined as 

strategies for accomplishing child care tasks that 

enable parents with disabilities to execute the 

task safely for themselves and their children. 

Adaptive techniques can be useful alone or in 

conjunction with equipment.

(3) “adoption” refers to the legal process by 

which a minor child and each adoptive parent 

gain the legal relationship of parent and child and 

have all the rights and duties of that relationship 

under law.

(4) “assisted reproductive technologies” 

include a wide range of medical technologies 

designed to treat infertility or otherwise assist 

with conception, such as drug or hormone 

therapy, artificial insemination by husband (AIH), 

artificial insemination by donor (AID), in vitro 

fertilization (IVF), or surrogacy. 

(5) “child custody proceedings” includes 

any action in which a third party is seeking to 

take custody of a child from its parent where 

the parent cannot have the child returned upon 

demand, up to and including the termination 

of the parent’s custody or visitation rights in 

either family court child custody or probate court 

guardianship or adoption cases.

(6) “child welfare proceeding” includes any 

action in which the state is removing a child from 

his or her parent pursuant to the parens patriae

power of the state where the parent cannot 

have the child returned upon demand, up to and 

including the termination of the parent’s parental 

rights occurring in a juvenile court.

(7) “disability” means a physical or mental 

impairment that substantially limits one or more 

of the major life activities of an individual, a 

record of such impairment, or being regarded as 

having such an impairment. This definition must 

be broadly interpreted, consistent with the ADA 

Amendments Act of 2008.

(8) “preventive services” include services 

designed to address the specific needs of a 

parent, including any needs that may be related 

to the parent’s disability, in order to prevent the 

removal of the child from the parent. 

(9) “reunification services” include services 

designed to address the specific needs of a 

parent whose child has been removed from the 

home as a result of abuse or neglect, including 

any needs that may be related to the parent’s 

disability, and to make it possible for the child to 

return safely to the parent. 

(10) “supportive parenting services” include 

services that help parents with a disability 

compensate for those aspects of the disability 

302 National Council on Disability
that affect their ability to care for their children 

and that will enable them to discharge their 

parental responsibilities. The term includes 

specialized or adapted training, evaluations, 

and assistance with effective use of adaptive 

equipment, as well as accommodations that 

allow a parent with a disability to benefit from 

other services, such as braille text or sign 

language interpreters.

(A) other similar services and actions. 

(1) State 

The term “state” means each of the 

several states, the District of Columbia, the 

Commonwealth of Puerto Rico, Guam, American 

Samoa, the Virgin Islands of the United States, 

the Trust Territory of the Pacific Islands, and the 

Commonwealth of the Northern Mariana Islands. 

[RELEVANT FOR FEDERAL, NOT FOR STATE]

§_____. Discrimination in Access to Assisted 

Reproductive Technologies, Child-Rearing, and 

Adoption 

(a) General Rule

No covered entity shall deny a person access 

to assisted reproductive technologies, adoption 

services, or the right to custody and control of 

their child solely on the basis of the person’s 

disability or the disability of the child in the latter 

case, and the states shall render appropriate 

assistance to parents with disabilities in the 

performance of their child-rearing responsibilities. 

(b) Construction

As used in subsection (a) of this section, 

the phrase “solely on the basis of the person’s 

disability” includes—

(1) promulgating, implementing, or 

enforcing state child welfare, family, or probate 

guardianship statutes that create special grounds 

or policies for the removal and detention of 

children from a parent owing to the parent’s 

disability, or the termination of the parental rights 

of, or the denial of custody or visitation to, a 

parent with a disability, solely on the basis of the 

parent’s disability;

(2) refusal to accommodate parents with 

disabilities in the child welfare system, family 

law, or probate courts, as required by 42 U.S.C. 

§12131, et seq.; or

(3) engaging in policies that have the effect 

of denying people with disabilities access to 

assisted reproductive technologies or adoption 

solely on the basis of their disability;

(4) participating in a contractual or other 

arrangement or relationship that has the effect of 

subjecting a parent with a disability or a child of 

such a parent to the discrimination prohibited by 

this subchapter; 

(5) using standards, criteria, or methods of 

administration—

(A) that have the effect of discrimination on 

the basis of disability; or 

(B) that perpetuate the discrimination of 

others who are subject to common administrative 

control. 

(c) Access to Assisted Reproductive 

Technologies

(1) Providers of assisted reproductive 

technologies (ART) shall not deny prospective 

parents with disabilities access to their 

services solely on the basis of a disability, or on 

speculation that the disability will render them 

unfit, without consideration of whether adaptive 

parenting equipment and/or supportive services 

could enable them to adequately parent, and 

providers should secure consultation where they 

lack expertise on adaptive parenting equipment 

and/or supportive services; 

(2) a provider who chooses to deny ART to 

a prospective parent with a disability based in 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 303
whole or in part on the belief that the disability 

renders the person unfit to parent must provide 

the prospective parent with a written statement 

to that effect. 

(d) Medical/Psychological Assessment and 

Evaluation 

(1) Psychiatrists and psychologists performing 

assessments or evaluations in the context of 

child welfare, family, or probate guardianship 

cases shall ensure that the measures they 

administer are intended for use with the disability 

population of which the parent is a member; and

(2) shall include as part of any evaluation 

or assessment of parental capacity or fitness 

observation of the parent and child, so long as 

this will not affect the physical or psychological 

safety of the child;

(3) shall include as part of any evaluation or 

assessment of parental capacity or fitness an 

inquiry into how adaptive parenting equipment 

and/or supportive services for parents with 

disabilities might affect the capacity or fitness of 

the parent; and 

(4) shall be familiar with adaptive parenting 

equipment, supportive services, and/or the 

assessment and evaluation of people with 

disabilities, or secure consultation or assistance if 

they lack such familiarity.

(e) Court Proceedings Generally 

(1) In family law, child welfare, or probate 

guardianship proceedings in which a parent with 

a disability may lose custody or visitation of a 

child, a parent with an intellectual or psychiatric 

disability that renders him or her unable to 

meaningfully participate in court proceedings 

shall be provided with appointed counsel from 

the time of the initial court hearing;

(2) Evidence regarding the role that adaptive 

parenting equipment and/or supportive parenting 

services can play in improving the parental 

fitness and/or capacity of parents with disabilities 

is relevant and admissible; 

(3) Where parental disability is alleged to 

have a detrimental impact on the child, the party 

raising the allegation bears the burden of proving 

a causal relationship and the detriment by clear 

and convincing evidence; 

(4) Should a court decide that disability 

is a relevant factor in a custody or visitation 

determination in child welfare, family, or probate 

guardianship proceedings, the court shall provide 

a written decision as to that issue.

(f) Parents with Disabilities in Child Welfare 

Cases Specifically

To ensure compliance with the ADA and 

protect the 14th Amendment rights of parents 

with disabilities and their families, a covered 

entity— 

(1) shall make inquiries into and document 

the disability status of the parent when a child is 

detained, to ensure that the parent is provided 

with appropriate accommodations during the 

child welfare process; 

(2) shall not order foster care placement in the 

absence of a determination, supported by clear 

and convincing evidence that includes testimony 

of qualified expert witnesses, that the continued 

custody of the child by the parent or custodian 

with a disability is likely to result in serious 

emotional or physical damage to the child;

(3) shall not order termination of parental 

rights in the absence of a determination, 

supported by evidence beyond a reasonable 

doubt that includes testimony of qualified expert 

witnesses, that the continued custody of the 

child by the parent or custodian with a disability 

is likely to result in serious emotional or physical 

damage to the child; 

304 National Council on Disability
(4) shall provide reasonable accommodations 

to parents with disabilities with regard to 

placement and visitation decisions; preventive, 

maintenance, and reunification services; and 

evaluation or assessment of parenting capacity, 

unless such covered entity can demonstrate that 

the accommodation would impose an undue 

hardship on the entity; 

(5) shall include a comprehensive array of 

preventive, maintenance, and reunification 

services that may be necessary to address a 

parent’s disability, such as supportive housing, 

assertive community treatment, crisis services, 

peer supports, household management training, 

homemaker services, substance abuse services, 

occupational therapy and parenting skills training, 

adaptive parenting equipment, and adaptive 

parenting technique training that is tailored to 

address the parent’s specific needs, and other 

supportive parenting services;

(6) shall not deny parents with disabilities 

reunification services solely on the basis of 

their disability or speculation regarding the 

impact of their disability on their capacity or 

fitness to parent, or require them to submit 

to additional testing to qualify for reunification 

services provided to nondisabled parents without 

additional testing; 

(7) a covered entity must provide evidence of 

active efforts to prevent the removal of a child or 

termination of parental rights of a parent with a 

disability where the parental disability is alleged 

to have a detrimental effect on the well-being of 

the child; and

(8) where there has been a finding of a 

failure by the covered entity to accommodate 

a parent with a disability during the pendency 

of proceedings, the Americans with 

Disabilities Act is a defense to termination of 

parental rights. 

(g) Prospective Adoptive Parents with 

Disabilities

(1) Providers of adoption services shall 

not deny prospective parents with disabilities 

access to their services solely on the basis of 

disability or on speculation that the disability 

will render them unfit, without consideration 

of whether adaptive parenting equipment and/

or supportive services could enable them 

to adequately parent, and providers should 

secure consultation where they lack expertise 

on adaptive parenting equipment and/or 

supportive services;

(2) where it is alleged that the prospective 

adoptive parent’s disability will have a detrimental 

impact on the child, the party raising the 

allegation bears the burden of proving that causal 

relationship and the detriment by clear and 

convincing evidence; 

(3) an adoption services provider who 

chooses to deny a prospective parent with a 

disability the opportunity to adopt based in whole 

or in part on their belief that the disability renders 

the person unfit to parent must provide the 

prospective parent with a written statement to 

that effect. 

(h) Access to Child-Centered Facilities and 

Programs

(1) Parents with disabilities must be afforded 

meaningful access, and accommodations to 

facilitate that access, to daycare and school 

facilities, including preschool. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 305
306 National Council on Disability
Title 42. The Public Health and Welfare

Chapter 126. Equal Opportunity for Individuals 

with Disabilities

Subchapter V. Respect for Home and Family

§§12214. Discrimination Against People with 

Disabilities in Parenting

§12214. Findings and Purpose.

(a) Findings.

Congress finds that—

(1) a primary motivation in enactment of the 

ADA was to address the subjection of people 

with disabilities to eugenics-inspired policies 

during the 20th century that deprived them of 

their fundamental right to procreate and raise 

their children; 

(2) in enacting the ADA, Congress sought to 

“provide a clear and comprehensive national 

mandate for the elimination of discrimination 

against individuals with disabilities”;

(3) while Congress expected that 42 USC 

§12132, and the regulations promulgated 

thereunder, would protect the 14th Amendment 

rights of people with disabilities to procreate 

and raise children, and the right of those 

children to be free from discrimination based on 

their association with a person with a disability 

(their parent), that expectation has not been 

fulfilled;

(4) 37 of the 50 states have promulgated 

child welfare or child custody statutes codifying 

parental disability as a separate and distinct 

basis upon which the state may seize and detain 

children, terminate parental rights, or deny 

custody of a child, with little or no requirement 

that the state prove a nexus between disability 

and detriment to the child;

(5) the holding in In re Christina A., 261 Cal.

Rptr. 903 (Cal. Ct. App. 1989) that disability-based 

exceptions to the due process requirements for 

reunification services in child welfare cases are 

constitutional and do not violate due process or 

equal protection and are not vague;

(6) the holding in In re Doe, 100 Haw. 335 

(2002) that the Americans with Disabilities Act is 

never a defense to termination of parental rights;

(7) the holding in Adams v. Monroe County 

Dept. of Social Services, 21 F.Supp.2d 235 

(W.D.N.Y.1998) that totally unregulated discretion 

is vested with adoption agencies to determine 

whether a prospective parent with a disability can 

ever adopt;

(8) that the states, exercising their recognized 

jurisdiction over child custody proceedings 

through administrative and judicial bodies, 

have often failed to provide accommodation 

as required pursuant to the ADA, while 

implementing and upholding invidious 

classification;

(9) as a result, an alarming number of families 

are broken up by the loss of custody or parental 

Appendix D. Proposed ADA Amendme

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 307
rights, often unwarranted, largely on the basis of 

the disability of the parent; 

(b) Purpose.

The purpose of this act is—

(1) to protect the best interests of children 

parented by a person with a disability by 

preserving the family and to protect the rights 

of people with disabilities to procreate and raise 

children through the establishment of minimum 

standards requiring adherence to the ADA and 

respect for the due process and equal protection 

rights of this population of parents in the 

context of child welfare, family law, and probate 

guardianship cases. 

 §12215. Definitions.

As used in this chapter:

(1) “adaptive parenting equipment” 

includes any piece of equipment or any item 

that is used to increase, maintain, or improve 

the parenting capabilities of a parent with a 

disability.

(A) acquisition or modification of such 

equipment or devices.

(2) “adaptive techniques” are defined as 

strategies for accomplishing child care tasks 

that enable parents with disabilities to execute 

the task safely for themselves and their child. 

Adaptive techniques can be useful alone or in 

conjunction with equipment.

(3) “adoption” refers to the legal process by 

which a minor child and each adoptive parent 

gain the legal relationship of parent and child and 

have all the rights and duties of that relationship 

under law.

(4) “assisted reproductive technologies” 

include a wide range of medical technologies 

designed to treat infertility or otherwise assist 

with conception, such as drug or hormone 

therapy, artificial insemination by husband (AIH), 

artificial insemination by donor (AID), in vitro 

fertilization (IVF), or surrogacy. 

(5) “child custody proceedings” includes 

any action where a third party is seeking to 

take custody of a child from its parent where 

the parent cannot have the child returned upon 

demand, up to and including the termination of 

the parent’s custody or visitation rights in either 

family court child custody, or probate court 

guardianship or adoption cases.

(6) “child welfare proceeding” includes any 

action where the state is removing a child from 

its parent pursuant to the parens patriae power 

of the state where the parent cannot have the 

child returned upon demand, up to and including 

the termination of the parent’s parental rights 

occurring in a juvenile court.

(7) “disability” means a physical or mental 

impairment that substantially limits one or more 

of the major life activities of an individual, a 

record of such impairment or being regarded as 

having such an impairment. This definition must 

be broadly interpreted, consistent with the ADA 

Amendments Act of 2008.

(8) “preventive services” include services 

designed to address the specific needs of a 

parent, including any needs that may be related 

to the parent’s disability, in order to prevent the 

removal of the child from the parent. 

(9) “reunification services” include services 

designed to address the specific needs of a 

parent whose child has been removed from the 

home as a result of abuse or neglect, including 

any needs that may be related to the parent’s 

disability, and to make it possible for the child to 

return safely to the parent. 

(10) “supportive parenting services” include 

services that help parents with a disability 

compensate for those aspects of the disability 

308 National Council on Disability
that affect their ability to care for their children 

and that will enable them to discharge their 

parental responsibilities. The term includes 

specialized or adapted training, evaluations, 

and assistance with effective use of adaptive 

equipment, as well as accommodations that 

allow a parent with a disability to benefit from 

other services, such as braille text or sign 

language interpreters.

(A) other similar services and actions. 

§12216. Discrimination.

(a) General rule.

No covered entity shall deny a person access 

to assisted reproductive technologies, adoption, 

or the right to custody and control of their child 

solely on the basis of the person’s disability or 

the disability of the child in the latter case, and 

the states shall render appropriate assistance to 

parents with disabilities in the performance of 

their child-rearing responsibilities. 

(b) Construction.

As used in subsection (a) of this section, 

the term “solely on the basis of the person’s 

disability” includes – 

(1) promulgating, implementing, or 

enforcing state child welfare, family, or probate 

guardianship statutes that create special grounds 

or policies for the removal and detention of 

children from a parent owing to the parent’s 

disability, or the termination of the parental rights 

of, or the denial of custody or visitation to, a 

parent with a disability, solely on the basis of the 

parent’s disability;

(2) refusal to accommodate parents with 

disabilities in the child welfare system, family 

law, or probate courts, as required by 42 U.S.C. 

§12131, et seq.; or

(3) engaging in policies that have the effect 

of denying people with disabilities access to 

assisted reproductive technologies solely on the 

basis of their disability;

(4) participating in a contractual or other 

arrangement or relationship that has the effect of 

subjecting a parent with a disability or a child of 

such a parent to the discrimination prohibited by 

this subchapter; 

(5) using standards, criteria, or methods of 

administration-- 

(A) that have the effect of discrimination on 

the basis of disability; or 

(B) that perpetuate the discrimination of 

others who are subject to common administrative 

control.

§12217. Access to Assisted Reproductive 

Technologies

(a) Providers of assisted reproductive 

technologies (ART) shall not deny prospective 

parents with disabilities access to their 

services solely on the basis of a disability, or on 

speculation that the disability will render them 

unfit, without consideration of whether adaptive 

parenting equipment and/or supportive services 

could enable them to adequately parent, and 

providers should secure consultation where they 

lack expertise on adaptive parenting equipment 

and/or supportive services; 

(b) a provider who chooses to deny ART to 

a prospective parent with a disability based in 

whole or in part on their belief that the disability 

renders the person unfit to parent must provide 

the prospective parent with a written statement 

to that effect. 

§12218. Medical and Psychological 

Assessment and Evaluation.

(a) Psychiatrists and psychologists performing 

assessments or evaluations in the context of 

child welfare, family, or probate guardianship 

cases shall ensure that the measures they 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 309
administer are intended for use with the disability 

population of which the parent is a member; and

(b) shall include as part of any evaluation 

or assessment of parental capacity or fitness 

observation of the parent and child, so long as 

this will not affect the physical or psychological 

safety of the child;

(c) shall include as part of any evaluation or 

assessment of parental capacity or fitness an 

inquiry into how adaptive parenting equipment 

and/or supportive services for parents with 

disabilities might affect the capacity or fitness of 

the parent; and 

(d) shall be familiar with adaptive parenting 

equipment, supportive services, and/or the 

assessment and evaluation of people with 

disabilities, or secure consultation or assistance if 

they lack such familiarity.

§12219. Court Proceedings. 

(a) In family law, child welfare, or probate 

guardianship proceedings in which a parent with 

a disability may lose custody or visitation of a 

child, a parent with an intellectual or psychiatric 

disability that renders him or her unable to 

meaningfully participate in court proceedings 

shall be provided with appointed counsel from 

the time of the initial court hearing;

(b) Evidence regarding the role that adaptive 

parenting equipment and/or supportive parenting 

services can play in improving the parental 

fitness and/or capacity of parents with disabilities 

is relevant and admissible; 

(c) Where parental disability is alleged to 

have a detrimental impact on the child, the party 

raising the allegation bears the burden of proving 

a causal relationship and the detriment by clear 

and convincing evidence; 

(d) Should a court decide that disability 

is a relevant factor in a custody or visitation 

determination in child welfare, family, or probate 

guardianship proceedings, the court shall provide 

a written decision as to that issue;

§12220. Parents with Disabilities in Child 

Welfare Cases Specifically.

To ensure compliance with the ADA and protect 

the 14th Amendment rights of parents with 

disabilities and their families, a covered entity— 

(1) shall make inquiries into and document 

the disability status of the parent when a child is 

detained, to ensure that the parent is provided 

with appropriate accommodations during the 

child welfare process; 

(2) shall not order foster care placement in 

the absence of a determination, supported by 

clear and convincing evidence that includes 

testimony of qualified expert witnesses, that 

the continued custody of the child by the parent 

or custodian with a disability is likely to result 

in serious emotional or physical damage to 

the child;

(3) shall not order termination of parental 

rights in the absence of a determination, 

supported by evidence beyond a reasonable 

doubt that includes testimony of qualified expert 

witnesses, that the continued custody of the 

child by the parent or custodian with a disability 

is likely to result in serious emotional or physical 

damage to the child. 

(4) shall provide reasonable accommodations 

to parents with disabilities with regard to 

placement and visitation decisions; preventive, 

maintenance, and reunification services; and 

evaluation or assessment of parenting capacity, 

unless such covered entity can demonstrate that 

the accommodation would impose an undue 

hardship on the entity; 

(5) shall include a comprehensive array of 

preventive, maintenance, and reunification 

310 National Council on Disability
services that may be necessary to address a 

parent’s disability, such as supportive housing, 

assertive community treatment, crisis services, 

peer supports, household management training, 

homemaker services, substance abuse services, 

occupational therapy and parenting skills training, 

adaptive parenting equipment and adaptive 

parenting technique training that is tailored to 

address the parent’s specific needs, and other 

supportive parenting services.

(6) shall not deny parents with disabilities 

reunification services solely on the basis of their 

disability or speculation regarding the impact of 

their disability on their capacity or fitness to parent, 

or require them to submit to additional testing 

to qualify for reunification services provided to 

nondisabled parents without additional testing; 

(7) a covered entity must provide evidence of 

active efforts to prevent the removal of a child or 

termination of parental rights of a parent with a 

disability where the parental disability is alleged 

to have a detrimental effect on the well-being of 

the child; and

(8) where there has been a finding of a 

failure by the covered entity to accommodate a 

parent with a disability during the pendency of 

proceedings, the Americans with Disabilities Act 

is a defense to termination of parental rights. 

§12221. Adoption.

(a) Providers of adoption services shall not 

deny prospective parents with disabilities access 

to their services solely on the basis of disability 

or on speculation that the disability will render 

them unfit, without consideration of whether 

adaptive parenting equipment and/or supportive 

services could enable them to adequately 

parent, and providers should secure consultation 

where they lack expertise on adaptive parenting 

equipment and/or supportive services;

(b) where it is alleged that the prospective 

adoptive parent’s disability will have a detrimental 

impact on the child, the party raising the 

allegation bears the burden of proving that causal 

relationship and the detriment by clear and 

convincing evidence; 

(c) an adoption services provider who chooses 

to deny a prospective parent with a disability the 

opportunity to adopt based in whole or in part on 

their belief that the disability renders the person 

unfit to parent must provide the prospective 

parent with a written statement to that effect. 

§12222. Access to Facilities and Programs

(a) Parents with disabilities must be afforded 

meaningful access, and accommodations to 

facilitate that access, to daycare and school 

facilities, including preschool. 

§12223. Regulations.

(a) Generally. 

Not later than 1 year after _________, the 

Attorney General shall issue regulations in an 

accessible format to carry out this section.

(b) Relationship to Other Regulations

Regulations under subsection (a) of this 

section shall be consistent with this chapter and 

with the coordination regulations under part 41 of 

title 28, Code of Federal Regulations 

(c) Standards.

Regulations under subsection (a) of this 

section shall include standards applicable to 

public and private entities covered by Titles II and 

III of the Americans with Disabilities Act. 

§12224. Severability. 

Should any provision in this chapter be found 

to be unconstitutional by a court of law, such 

provision shall be severed from the remainder of 

this chapter and such action shall not affect the 

enforceability of the remaining provisions of this 

chapter.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 311
312 National Council on Disability
Endnotes

1 Jennifer Thomas, mother of seven-year-old twins Abigail and Noah. Jennifer is a wheelchair user with cerebral 

palsy.

2 Carl H. Coleman, “Conceiving Harm: Disability Discrimination in Assisted Reproductive Technologies,” UCLA 

Law Review 50 (2002): 24.

3 Michael G. Silver, “Eugenics and Compulsory Sterilization Laws: Providing Redress for the Victims of a 

Shameful Era in United States History,” George Washington Law Review 72 (2004): 862, 864.

4 Paul A. Lombardo, “Medicine, Eugenics and the Supreme Court: From Coercive Sterilization to Reproductive 

Freedom,” Journal of Contemporary Health and Policy 13 (1996): 1, 3.

5 Paul A. Lombardo, Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell (Baltimore, 

MD: John Hopkins University Press, 2008).

6 Buck v. Bell, 274 U.S. 200 (1927).

7 Id. at 205.

8 Id.

9 Id. at 206.

10 Id. at 208.

11 Estate of C.W., 640 A.2d 427 (Pa. Super. Ct. 1994), cert. denied, 115 S. Ct. 1175 (1995).

12 Vaughn v. Ruoff, 253 F.3d 1124 (8th Cir. 2001).

13 Id. at 1129.

14 The following states retain dangerous and offensive statutory language that authorizes a court to order 

the involuntary sterilization of a person with a disability: Arkansas (Ark. Code Ann. §20-49-101); Colorado 

(Colo. Rev. Stat. §27-10.5-130); Delaware (16 Del.C. §5712); Georgia (Ga. Code. Ann. §31-20-3); Maine 

(34-B M.R.S.A. §7010); North Carolina (N.C.G.S.A. §35A-1245); Oregon (O.R.S. §436.205); Utah (U.C.A. 

1953 §62A-6-102); Vermont (18 V.S.A. §8705 et seq.); Virginia (Va. Code Ann. §54.1-2975 et seq.); West 

Virginia (W.Va. Code, §27-16-1 et seq. (uses especially offensive language regarding the best interests 

of society).

15 Ed Pikington and Karen McVeigh, “‘Ashley Treatment’ on the Rise Amid Concerns from Disability Rights 

Groups,” The Guardian, March 15, 2012, http://www.guardian.co.uk/society/2012/mar/15/ashley-treatmentrise-amid-concerns/print. 

16 Guardianship of Mary Moe, 960 N.E.2d 350 (Mass. App. Ct. 2012).

17 Craig Hemmens et al., “The Consequences of Official Labels: An Examination of the Rights Lost by the 

Mentally Ill and Mentally Incompetent Ten Years Later,” Community Mental Health Journal 38(2) (2002): 136.

18 Id.

19 Law Students for Reproductive Justice, “Women with Disabilities,” accessed November 15, 2011, http://lsrj.org

/documents/11_Women with Disabilities.pdf. 

20 Michael Ashley Stein, “Mommy Had a Blue Wheelchair: Recognizing the Parental Rights of Individuals with 

Disabilities,” Brooklyn Law Review 60 (1994): 1073.

21 Id. at 1074.

22 Id. at 1075.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 313
23 Elizabeth Lightfoot, Katharine Hill, and Traci LaLiberte, “The Inclusion of Disability as a Condition for Termination 

of Parental Rights,” Child Abuse and Neglect 34 (2010): 928.

24 Corbett Joan O’Toole and Tanis Doe, “Sexuality and Disabled Parents with Disabled Children,” Sexuality and 

Disability 20 (2002): 90.

25 Pseudonym used to protect confidentiality. E-mail, February 28, 2012.

26 Carrie Killoran, “Women with Disabilities Having Children: It’s Our Right Too,” Sexuality and Disability 12 (1994): 

122.

27 O’Toole and Doe, Supra note 24, 90.

28 Pseudonym used to protect confidentiality. Telephone conversation, January 20, 2012.

29 Pseudonym used to protect confidentiality. Telephone conversation, October 12, 2011.

30 Kara Ayers, “Anything for Baby,” New Mobility, February 2011, accessed November 30, 2011, 

http://www.newmobility.com/articleView.cfm?id=11807. 

31 Id.

32 Ora Prilletensky, “A Ramp to Motherhood: The Experiences of Mothers with Physical Disabilities,” Sexuality and 

Disability 21(1) (2003): 22–23.

33 Pseudonym used to protect confidentiality. Telephone conversation, September 27, 2012.

34 Megan Kirshbaum and Rhoda Olkin, “Parents with Physical, Systemic, or Visual Disabilities,” Sexuality and 

Disabilities 20(1) (2002): 67.

35 Paul Preston, “Parents with Disabilities,” International Encyclopedia of Rehabilitation, edited by J.H. Stone and 

M. Blouin (2011), http://cirrie.buffalo.edu/encyclopedia/en/article/36/. 

36 Id.

37 Id.

38 Corbett Joan O’Toole, “Sex, Disability and Motherhood: Access to Sexuality for Disabled Mothers,” Disability 

Studies Quarterly 22(4) (2002): 81–101, http://dsq-sds.org/article/view/374/495.

39 Preston, Supra note 35.

40 Stephen H. Kaye, Population Estimates and Demographics of Parents with Disabilities in the United States

(Berkeley, CA: Through the Looking Glass, 2011).

41 Stephen H. Kaye, Unpublished Tabulations from the 2008 and 2009 American Community Survey.

42 Id.

43 Preston, Supra note 35.

44 Id.

45 Centers for Disease Control and Prevention, “Prevalence of Autism Spectrum Disorders — Autism and 

Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008, Morbidity and Mortality Weekly 

Report, March 30, 2012, http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w. 

46 National Center for Veterans Analysis and Statistics, “Trends in Veterans with a Service-Connected Disability: FY 

1985 to FY 2010,” January 2012, http://www.va.gov/vetdata/docs/QuickFacts/SCD_quickfacts_FY2010.pdf. 

47 Meyer v. Nebraska, 262 U.S. 390, (1923).

48 Pierce v. Society of Sisters, 268 U.S. 510, (1925).

49 Id. at 535.

50 Stanley v. Illinois, 405 U.S. 645 (1972).

51 Id. at 651.

52 Smith v. OFFER, 431 U.S. at 816.

53 321 U.S. 158 (1944).

54 Quilloin v. Walcott, 434 U.S. 246, 255 (1978) (quoting Prince v. Massachusetts, 321 U.S. 158, 166 (1944)).

55 See, e.g., M.L.B. v. S.L.J., 519 U.S. 102, (1996) (holding that parents have a right to access the trial record for 

the purpose of appealing a decision to terminate their rights regardless of their ability to pay for the record).

56 Id. at 116 (internal quotations and citation omitted).

57 Id. at 120.

314 National Council on Disability
58 Id.

59 Troxel v. Granville, 530 U.S. 57, (2000).

60 Catherine J. Ross, “The Tyranny of Time: Vulnerable Children, ‘Bad’ Mothers, and Statutory Deadlines in 

Parental Termination Proceedings,” Virginia Journal of Social Policy and Law 11 (2004): 182.

61 Troxel v. Granville, 530 U.S. 57, (2000).

62 Id.

63 Id.

64 City of Cleburne, 473 U.S. at 442.

65 Dave Shade, “Empowerment for the Pursuit of Happiness: Parents with Disabilities and the Americans with 

Disabilities Act,” Law and Inequality 16 (1998): 153–154.

66 Wisconsin v. Yoder et al., 406 U.S. 205 (1972).

67 Id. at 233–234.

68 Chris Watkins, “Beyond Status: The Americans with Disabilities Act and the Parental Rights of People Labeled 

Developmentally Disabled or Mentally Retarded,” California Law Review 83 (1995): 1431–1432.

69 Shade, Supra note 65, 156–157.

70 Watkins, Supra note 68, 1431 (citing Ex Parte Crouse, 4 Whart. 9, 11 (Pa. 1839).

71 Stanley v. Illinois, 405 U.S. 645 (1972).

72 Lassiter v. Department of Social Services of Durham County, N.C., 452 U.S. 18 (1981).

73 Id.

74 Id. at 31–32.

75 Santosky v. Kramer, 455 U.S. 745 (1982).

76 Id. at 760.

77 Id. at 769.

78 Id. at 753.

79 Child Abuse Prevention and Treatment Act of 1974 (P.L. 93-247), 42 U.S.C. § 5101; see also Cynthia CrossonTower, Understanding Child Abuse and Neglect, 4th Edition (Boston: Allyn & Bacon, 1999.).

80 Indian Child Welfare Act of 1978 (P.L. 95-608), codified at 25 U.S.C. § 1901 et seq.; see also Child Welfare 

Information Gateway, Major Federal Legislation Concerned with Child Protection, Child Welfare, and Adoption

(April 2011), accessed November 21, 2011, http://www.childwelfare.gov/pubs/otherpubs/majorfedlegis.pdf.

81 Hearings before the Subcommittee on Indian Affairs of the Senate Committee on the Interior and Insular 

Affairs, 93d Cong. § 3, at 15 (1974) (stating that studies undertaken by the association on American Indian 

Affairs in 1969 and 1974, and presented in the Senate hearings, showed that 25 percent to 35 percent of 

all Indian children had been separated from their families and placed in adoptive families, foster care, or 

institutions).

82 P.L. 96-272 (enacted June 17, 1980) repealed the old foster care provisions of Title I.V-A of the Social 

Security Act, added a new Title IV-E (Foster Care and Adoption Assistance), and amended Title IV-B 

(Child Welfare Services) of the Social Security Act. 42 U.S.C. §§ 620 et seq. and 670 et seq.; see also 

Laureen D’Ambra, “Terminating the Parental Rights of the Mentally Disabled,” Rhode Island Bar Journal 

49 (2001): 5.

83 Id.

84 Id.

85 Id.

86 Id.

87 Barriers to Adoption: Hearing on How Public Law 96-272, The Adoption Assistance and Child Welfare Act, 

Is a Barrier to Adoption, before the Subcommittee on Human Resources of the House Committee on Ways 

and Means, 104th Cong. (1996) (statement of David Liederman, executive director, Child Welfare League of 

America, Inc.).

88 Id.; See also D’Ambra Supra note 82, 5.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 315
89 Improving the Well-Being of Abused and Neglected Children: Hearing Before the Senate Comm. on Labor and 

Human Resources, 104th Cong. 16 (1996) (statement of Sen. Mike DeWine).

90 Id.

91 P.L. 105-89; Title IV-E Foster Care Eligibility Reviews and Child and Family Services State Plan Reviews, 65 Fed. 

Reg. 4020–4088 (January 25, 2000) (amending 45 C.F.R. §§ 1355, 1356, and 1357); see also D’Ambra Supra

note 82, 6.

92 Id.

93 Id.

94 42 U.S.C. § 671(a)(15)(F); 45 C.F.R. § 1356.21(b)(4); 45 C.F.R. § 1356.21(i); 45 Fed. Reg. 4054 (Jan. 25, 2000) 

(describing concurrent planning as consistent with good practice).

95 Christine Breeden, Rhoda Olkin, and Daniel Taube, “Child Custody Evaluations When One Divorcing Parent has 

a Physical Disability,” Rehabilitation Psychology 53(4) (2008): 445.

96 Id.

97 Id.

98 Ella Callow, Kelly Buckland, and Shannon Jones, “Parents with Disabilities in the United States: Prevalence, 

Perspectives, and a Proposal for Legislative Change to Protect the Right to Family in the Disability 

Community,” Texas Journal of Civil Liberties and Civil Rights 17 (2011): 9–42.

99 Id.

100 Id.

101 Jehnna Irene Hanan, “The Best Interest of the Child: Eliminating Discrimination in the Screening of Adoptive 

Parents,” Golden Gate University Law Review 27 (1997): 167–168.

102 Id.

103 Brenda K. DeVries, “Health Should Not Be a Determinative Factor of Whether One Will Be a Suitable Adoptive 

Parent,” Indiana Health Law Review 6 (2009): 141–142.

104 Id. at 144–145.

105 Id.

106 Child Welfare Information Gateway, “Federal Laws Related to Adoption,” accessed February 14, 2012, 

http://www.childwelfare.gov/adoption/laws/federal/.

107 Hanan, Supra note 101, 174–175.

108 Sara C. Mills, “Perpetuating Ageism via Adoption Standards and Practices,” Wisconsin Journal of Law, Gender 

and Society 26 (2011): 73–74.

109 Child Welfare Information Gateway, “Adoption Options,” accessed February 15, 2012, http://www.childwelfare

.gov/pubs/f_adoptoption.pdf.

110 Erika Lynn Kleiman, “Caring for Our Own: Why American Adoption Law and Policy Must Change,” Columbia 

Journal of Law and Social Problems, Inc. 30 (1997): 327.

111 Adoption.com, “Interstate Adoptions: ICPC and ICAMA,” accessed March 19, 2012, http://adopting.adoption

.com/child/interstate-adoption-icpc-and-icama.html. 

112 Child Welfare Information Gateway, Supra note 109.

113 Id.

114 Id.

115 Child Welfare Information Gateway, “Intercountry Adoption from Hague Convention and Non-Hague 

Convention Countries,” accessed February 15, 2012, http://www.childwelfare.gov/pubs/factsheets/hague.cfm.

116 Id.

117 Id.

118 Hague Conference on Private International Law, “Status Table,” accessed March 20, 2012, http://www.hcch

.net/index_en.php?act=conventions.status&cid=69. 

119 See Child Welfare Information Gateway, Supra note 115.

120 Americans with Disabilities Act, 42 U.S.C. § 12102 (1990), amended by the Americans with Disabilities 

Amendments Act, Pub. L. No. 110-325 (2008).

316 National Council on Disability
121 Id.; see also Bragdon v. Abbott, 524 U.S. 624 (1998) holding that the reproductive system is a major life 

activity.

122 42 U.S.C. §12102

123 28 C.R.F. § 35.130(g), § 36.205.

124 Rehabilitation Act, 29 U.S.C. § 701 (1973).

125 Id.

126 Id. at § 794 (emphasis added).

127 Id. § 794.

128 Id. § 791.

129 Id. § 793.

130 Id. § 794d.

131 Pub. L. No. 101-336, 104 Stat. 327 (1990).

132 42 U.S.C. § 12101(a)(2).

133 42 U.S.C. § 12101(a)(7).

134 Id. at § 12101(b)(1).

135 2 Leg. Hist.1331; H.R. Rep. No. 485, Pt. 3 at 25; H.R. Rep. No. 485, Pt. 2, at 41; Theresa Glennon, “Lawyering 

for the Mentally Ill: Walking with Them: Advocating for Parents with Mental Illnesses in the Child Welfare 

System,” Temple Political and Civil Rights Law Review 12 (2003): 275.

136 Susan Stefan, “Accommodating Families: Using the Americans with Disabilities Act to Keep Families Together,” 

St. Louis University Journal of Health Law and Policy 2 (2008): 155.

137 42 U.S.C. § 12111.

138 42 U.S.C. § 12131.

139 42 U.S.C. § 12141.

140 42 U.S.C. § 12181.

141 47 U.S.C. § 225.

142 42 U.S.C. § 12201.

143 42 U.S.C. § 12131 et seq.

144 Id. at § 12132.

145 Id. at § 12131 (1)(B).

146 28 C.F.R. 42.503.

147 Tennessee v. Lane, 541 U.S. 509,531 (2004).

148 28 C.F.R. § 35130(b).

149 28 C.F.R.§ 35.130(b)(7).

150 28 C.F.R § 35.130(d).

151 28 C.F.R. § 35.130(b)(8).

152 28 C.F.R. § 35.160(a)(1),(b)(1), 28 C.F.R. § 35.164.

153 28 C.F.R. § 35.130(c).

154 28 C.F.R. § 35.130(f).

155 28 C.F.R. § 35.149.

156 “Title II Highlights,” U.S. Department of Justice, Civil Rights Division, Disability Rights Section, last modified 

August 29, 2002, http://www.ada.gov/t2hlt95.htm.

157 The Department of Justice published revised regulations for Titles II and III ADA in the Federal Register on 

September 15, 2010. These regulations adopted revised, enforceable accessibility standards called the 2010 

ADA Standards for Accessible Design (2010 Standards or Standards). The 2010 Standards set minimum 

requirements – both scoping and technical -- for newly designed and constructed or altered state and local 

government facilities, public accommodations, and commercial facilities to be readily accessible to and usable 

by people with disabilities. See Revised ADA Requirements: http://www.ada.gov/revised_effective_dates-2010.

htm. (February 16, 2011).

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 317
158 28 C.F.R. § 35.150(b)(2)(i).

159 28 C.F.R. § 35.150(b)(1).

160 28 C.F.R. § 35.150(a).

161 28 C.F.R. § 35.150(a)(3).

162 28 C.F.R. § 35.150(a)(3).

163 28 C.F.R. § 35.130(h).

164 28 C.F.R. § 35.130(h).

165 28 C.F.R. § 35.139.

166 28 C.F.R. § 35.139.

167 42 U.S.C. § 12181.

168 28 C.F.R. § 36.104.

169 28 C.F.R. §36.303(a).

170 28 C.F.R. § 36.302(a).

171 28 C.F.R. § 36.303(a).

172 28 C.F.R. § 36.401 et seq.

173 28 C.F.R. § 36.304.

174 28 C.F.R. § 36.208.

175 Id.

176 28 C.F.R. § 36.301(b).

177 Id.

178 Through the Looking Glass, “Visible, Diverse, and United: A Report of the Bay Area Parents with Disabilities 

and Deaf Parents Task Force,” October 30, 2006, http://www.lookingglass.org/announcements

/67-news/100-report-task-force-on-bay-area-parents-with-disabilities-and-deaf-parents.

179 Id.

180 Id.

181 Pseudonym used to protect confidentiality. Telephone conversation, October 5, 2011.

182 Pseudonym used to protect confidentiality. Telephone conversation, October 12, 2011.

183 Pseudonym used to protect confidentiality. Telephone conversation, September 27, 2011.

184 Pseudonym used to protect confidentiality. Telephone conversation, January 20, 2012.

185 Linda Toms Barker and Vida Maralami, Challenges and Strategies of Disabled Parents: Findings from a National 

Survey of Parents with Disabilities (Berkeley, CA: Through the Looking Glass, 1997), 4–2.

186 Id.

187 Pseudonym used to protect confidentiality. Telephone conversation, October 11, 2011.

188 Convention on the Rights of Persons with Disabilities, GA Res 61/106, UN Doc A/RES/61/106 (Dec. 13, 2006), 

preambular para (x).

189 Convention on the Rights of Persons with Disabilities.

190 White House Office of the Press Secretary, Remarks by the President on Signing of U.N. Convention on the 

Rights of Persons with Disabilities Proclamation (June 22, 2010).

191 Convention on the Rights of Persons with Disabilities, art. 1.

192 For an overview of the CRPD and its reflection of the social model of disability, see Rosemary Kayess 

and Phillip French, “Out of Darkness into Light? Introducing the Convention on the Rights of Persons with 

Disabilities,” Human Rights law Review 8 (2008): 1–27. 

193 Gerard Quinn, “Closing: Next Steps—Towards a United Nations Treaty on the Rights of Persons with 

Disabilities,” in Peter Blanck (Ed.), Disability Rights: International Library of Essays on Rights (pp. 519, 541) 

(Aldershot, England: Ashgate Pub., 2005).

194 Convention on the Rights of Persons with Disabilities, Supra note 188 at preambular para. (e). 

195 Id. at art. 2.

318 National Council on Disability
196 Id. at art. 3.

197 Id. at art. 23. 

198 Id. (emphasis added).

199 Callow, Buckland, and Jones, Supra note 98.

200 Convention on the Rights of Persons with Disabilities, Supra note 188 at art. 23 (emphasis added).

201 Id. at art. 25.

202 Id. at art. 5.

203 Id. at art. 8.

204 Id.

205 Id.

206 Id. at art. 13.

207 Id. at art. 28.

208 See Jay Matthews, A Mother’s Touch: The Tiffany Callo Story (New York: Henry Holt and Co., 1992).

209 Child Welfare Information Gateway, “How the Child Welfare System Works” (May 2011), accessed February 9, 

2012, http://www.childwelfare.gov/pubs/factsheets/cpswork.cfm.

210 Jan McCarthy et al., A Family’s Guide to the Child Welfare System (Washington, DC: National 

Technical Assistance Partnership for Child and Family Mental Health at Georgetown University Center for 

Child and Human Development, 2003), accessed February 9, 2012, http://www.cwla.org/childwelfare

/familyguide.htm.

211 Child Welfare Information Gateway, Supra note 209.

212 Id.

213 McCarthy et al., Supra note 210.

214 U.S. Government Accountability Office, Foster Care: Recent Legislation Helps States Focus on Finding 

Permanent Homes for Children, But Long-Standing Barriers Remain, GAO-02-585, (Washington, DC, 2002), 

http://www.gao.gov/new.items/d02585.pdf. 

215 Id.

216 Id.

217 Id.

218 U.S. Department of Health and Human Services, “Children’s Bureau Fact Sheet,” accessed March 15, 2012, 

http://www.acf.hhs.gov/opa/fact_sheets/childrensbureau_factsheet.html. 

219 McCarthy et al., Supra note 210.

220 Id.

221 Id.

222 Id.

223 Child Welfare Information Gateway, Supra note 209.

224 Id.

225 Id.

226 Id.

227 Id.

228 Id.

229 Rachel L. Lawless, “When Love is Not Enough: Termination of Parental Rights When the Parents Have a 

Mental Disability,” Capital University Law Review 37 (2008): 495.

230 Stephanie N. Gwillim, “The Death Penalty of Civil Cases: The Need for Individualized Assessment and Judicial 

Education When Terminating Parental Rights of Mentally Ill Individuals,” St. Louis University Public Law Review 

29 (2009): 344.

231 2 Leg. Hist.1331.

232 H.R. Rep. No. 485, Pt. 3 at 25.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 319
233 H.R. Rep. No. 485, Pt. 2, at 41.

234 Glennon, Supra note 135, 275.

235 42 U.S.C. § 12131 et seq.

236 Id. at § 12132.

237 28 C.F.R. § 35130(b).

238 28 C.F.R.§ 35.130(b)(7).

239 28 C.F.R § 35.130(d).

240 28 C.F.R. § 35.130(b)(8).

241 28 C.F.R. § 35.160(a)(1),(b)(1), 28 C.F.R. § 35.164.

242 28 C.F.R. § 35.130(c).

243 28 C.F.R. § 35.130(f).

244 28 C.F.R. § 35.149.

245 “Title II Highlights,” U.S. Department of Justice, Civil Rights Division, Disability Rights Section, last modified 

August 29, 2002, http://www.ada.gov/t2hlt95.htm.

246 ADA Technical Assistance Manual, II-3.9000, http://www.ada.gov/taman2.html. 

247 Dale Margolin, “No Chance to Prove Themselves: The Rights of Mentally Disabled Parents Under the 

Americans with Disabilities Act and State Law,” Virginia Journal of Social Policy and the Law 15 (2007): 117 

(citing Yeskey v. Pennsylvania, 524 U.S. 206 (1998)).

248 Margolin, Supra note 247, 123–124.

249 Loran B. Kundra and Leslie B. Alexander, “Termination of Parental Rights Proceedings: Legal Considerations 

and Practical Strategies for Parents with Psychiatric Disabilities and the Practitioners Who Serve Them,” 

Psychiatric Rehabilitation Journal 33(2) (2009): 144–145.

250 Margolin, Supra note 247, 117-118 (citing Thompson v. Davis, 295 F.3d 890 (9th Cir. 2002)).

251 Id. (citing Henrietta v. Bloomberg, 331 F.3d 261 (2d Cir. 2003)).

252 Susan Kerr, “The Application of the Americans with Disabilities Act to the Termination of the Parental Rights of 

Individuals with Mental Disabilities,” Journal of Contemporary Health Law and Policy 16 (2000): 402.

253 Currently, the NCANDS Caregiver Risk Factors cannot be linked to perpetrator characteristics. While the term 

“caretaker” does not necessarily correlate to parent within the parameters of this dataset, American children 

reside with parents 95.9 percent of the time; grandparents are the caretaker in 54.9 percent of the remaining 

instances (DHHS-ChildStats, 2011). This can be resolved if future reporting efforts identify whether each 

perpetrator was a caregiver of the victim and then ask about caregiver characteristics for each caregiver on the 

report.

254 Data Source: Through the Looking Glass; Gemmill, Alison, Summary of the 2008 National Child Abuse 

and Neglect Data System (NCANDS) Child File: Victims of Maltreatment and their Caregivers’ Disabilities

(Berkeley, CA: Though the Looking Glass, 2011).

255 Consistent with the NCANDS federal project’s 2008 efforts to improve data quality, our analysis applied the 

same threshold used in the caregiver risk factor of domestic violence. States were excluded from our analysis 

if fewer than 10 percent of all records contained a reported caregiver disability. This resulted in analysis of data 

for 19 states. 

256 S. Singh, et al., “Parental Disability and Termination of Parental Rights in Child Welfare, Minn-LInK Brief No. 

12,” (Center for Advance Studies in Child Welfare, 2012), accessed March 8, 2012, http://www.cehd.umn.edu

/ssw/cascw/research/minnlink/minnlinkpublications.asp.

257 Lightfoot, Hill, and LaLiberte, Supra note 23, 928.

258 Kundra and Alexander, Supra note 249, 143.

259 Lightfoot, Hill, and LaLiberte, Supra note 23, 928; Maurice Feldman, “Parents with Intellectual Disabilities: 

Implications and Interventions,” in J. Lutzker (Ed.), Handbook on Child Abuse Research and Treatment (pp. 

401–420) (New York, Plenum Press: 1998).

260 Id. at 129.

320 National Council on Disability
261 Alexis C. Collentine, “Respecting Intellectually Disabled Parents: A Call for Change in State Termination of 

Parental Rights Statutes,” Hofstra Law Review 34 (2005): 542–543.

262 Lightfoot, Hill, and LaLiberte, Supra note 23, 928.

263 National Council on Disability, Meeting the Unique Needs of Minorities with Disabilities, (Washington, DC: 

1993), http://www.ncd.gov/NCD/publications/1993/April261993#371326a5_dce1_425d_9c9a_a5590cce5ec2. 

264 Children’s Rights, “Facts about Disparities in Foster Care,” accessed February 29, 2012, http://www

.childrensrights.org/issues-resources/foster-care/facts-about-disparities-in-foster-care.

265 Kundra and Alexander, Supra note 249, 144.

266 Diane T. Marsh, “Parental Mental Illness: Issues in Custody Determination,” American Journal of Family Law 

23(1) (2009): 29.

267 Kundra and Alexander, Supra note 249, 143.

268 Chris Watkins, Supra note 68, 1417.

269 Paul Preston, Supra note 35.

270 Watkins, Supra note 68, 1435–1436.

271 Id.

272 Id.

273 Joshua B. Kay, “Representing Parents with Disabilities in Child Protection Proceedings,” Michigan Child 

Welfare Law Journal (2009): 28.

274 Id.

275 Washington State Racial Disproportionality Advisory Committee, Racial Disproportionality in 

Washington State: Literature Review, accessed February 10, 2012, http://dshs.wa.gov/pdf/ca

/dispro_LitReview.pdf. 

276 Id.

277 Ella Callow, e-mail message to author, March 7, 2012.

278 Id.

279 Id.

280 Lightfoot, Hill, and LaLiberte, Supra note 23, 928 (citing Phillip Swain and Nadine Cameron, “‘Good Enough 

Parenting:’ Parental Disability and Child Protection,” Disability and Society 18(2) (2003): 165–177).

281 Id.

282 Id.

283 Id.

284 Pseudonym used to protect confidentiality. Telephone conversation, October 5, 2011.

285 Pseudonym used to protect confidentiality. Telephone conversation, October 12, 2011.

286 Robert L. Hayman, Jr., “Presumptions of Justice: Law, Politics, and the Mentally Retarded Parent,” Harvard 

Law Review 103 (1990): 1228.

287 Watkins, Supra note 68, 1435.

288 David McConnell and Gwynnyth Llewellyn, “Disability and Discrimination in Statutory Child Protection 

Proceedings,” Disability and Society 15(6) (2000): 885. 

289 Id. (citing In re G.C.P., 680 S.W.2d 429 (Mo. App. 1984)).

290 Connie Conley-Jung and Rhoda Olkin, “Mothers with Visual Impairments Who Are Raising Young Children,” 

Journal of Visual Impairment and Blindness 91(1) (2001): 15.

291 Pseudonym used to protect confidentiality. Telephone conversation, September 27, 2011.

292 Pseudonym used to protect confidentiality. Telephone conversation, January 20, 2012.

293 Pseudonym used to protect confidentiality. Telephone conversation, October 12, 2011.

294 Pseudonym used to protect confidentiality. Telephone conversation, November 1, 2011.

295 Pseudonym used to protect confidentiality. E-mail message to author, February 28, 2012.

296 Pseudonym used to protect confidentiality. Telephone conversation, October 7, 2011.

297 Michael Ashley Stein, Supra note, 20, 1095-1096.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 321
298 Ella Callow, “Maintaining Families When Parents have Disabilities,” ABA Child Law Practice 28(9) (2009): 134.

299 42 U.S.C. at § 12132.

300 Lightfoot, Hill, and LaLiberte, Supra note 23, 930.

301 Id.

302 Id. at 928.

303 Id.

304 Id.

305 Id.

306 Id.

307 Hayman, Jr., Supra note 286, 1269.

308 Elizabeth Lightfoot and Traci LaLiberte “Parental Supports for Parents with Intellectual and Developmental 

Disabilities,” Intellectual and Developmental Disabilities 49 (2011): 389.

309 Id.

310 Id.

311 Watkins, Supra note 68, 1438.

312 Hayman, Jr., Supra note 286, 1268–1269.

313 Lightfoot and LaLiberte, Supra note 308, 389.

314 Margolin, Supra note 247, 153.

315 P.L. 105-89; Title IV-E Foster Care Eligibility Reviews and Child and Family Services State Plan Reviews, 65 Fed. 

Reg. 4020–4088 (January 25, 2000) (amending 45 C.F.R. §§ 1355, 1356, and 1357); see also Marcia Robinson 

Lowry, “Putting Teeth into ASFA: The Need for Statutory Minimum Standards,” Children and Youth Services 

Review 26 (2004): 1021–1022.

316 Id.

317 42 U.S.C. § 675(5)(E); see also Olivia Golden and Jennifer Macomber, “Framework Paper,” in O. Golden and 

J.E. Macomber (Eds.), Intentions and Results: A Look Back at the Adoption and Safe Families Act (p. 11) 

(Washington, DC: Center for the Study of Social Policy and the Urban Institute, 2009).

318 42 U.S.C. § 671(a)(15)(B).

319 42 U.S.C. § 675(5)(E); 42 U.S.C. § 671(a)(15)(D)(i); 42 U.S.C. § 671(a)(15)(D)(ii) 42 U.S.C. § 671(15)(D)(ii); 42 

U.S.C. § 671(a)(15)(D)(iii); 42 U.S.C. § 671(a)(15)(A), 42 U.S.C. § 671(a)(15)(D)(i), 65 Fed. Reg. 4060 (Jan. 25, 

2000); see also U.S. Government Accountability Office, Foster Care: States’ Early Experiences Implementing 

the Adoption and Safe Families Act, GAO/HEHS-00-1, (Washington, DC, 1999), http://www.gao.gov/new.items

/he00001.pdf.

320 42 U.S.C. § 671(a)(15)(A), 42 U.S.C. § 671(a)(15)(D)(i), 65 Fed. Reg. 4060 (Jan. 25, 2000).

321 42 U.S.C. § 671(a)(15)(F); 45 C.F.R. § 1356.21(b)(4); 45 C.F.R. § 1356.21(i); 45 Fed. Reg. 4054 (Jan. 25, 2000); 

see also Glennon, Supra note 135, 279.

322 42 U.S.C. § 671(a)(15)(F); 45 C.F.R. § 1356.21(b)(4); 45 C.F.R. § 1356.21(i); 45 Fed. Reg. 4054 (Jan. 25, 2000) 

(describing concurrent planning as consistent with good practice.).

323 Glennon, Supra note 135, 279.

324 Id.

325 Id.

326 Id. at 280.

327 42 U.S.C. § 675.

328 45 C.F.R. § 1356.21(i)(2).

329 Child Welfare Information Gateway, Grounds for Involuntary Termination of Parental Rights (February 2010), 

http://www.childwelfare.gov/systemwide/laws_policies/statutes/groundtermin.cfm.

330 Id.

331 Callow, Buckland, and Jones, Supra note 98.

332 Kundra and Alexander, Supra note 249, 144.

322 National Council on Disability
333 Sherrie Hansen, Annual Program Evaluation Reports to the Regional Center of the East Bay, 1990–2010.

334 Barbara J. Friesen et al., “Parents with a Mental Illness and Implementation of the Adoption and Safe Families Act,” 

In O. Golden and J. Macomber (Eds.), Intentions and Results: A Look Back at the Adoption and Safe Families Act

(pp. 109–110). (Washington, DC: Urban Institute, Center for the Study of Social Policy, 2009).

335 Id.

336 Lenore M. McWey, Tammy L. Henderson, and Susan N. Tice, “Mental Health Issues and the Foster Care 

System: An Examination of the Impact of the Adoption and Safe Families Act,” Journal of Marital and Family 

Therapy 32 (2) (2006): 195.

337 Id. at 202.

338 Id.

339 Id. at 203.

340 U.S. Government Accountability Office, Supra note 214.

341 Kay, Supra note 273, 29.

342 42 U.S.C. § 671(a)(15)(B).

343 42 U.S.C. § 675.

344 U.S. Government Accountability Office, Supra note 319.

345 Child Welfare Information Gateway, Reasonable Efforts to Preserve or Reunify Families and Achieve 

Permanency for Children: Summary of State Laws (July 2009), accessed December 1, 2011. 

http://www.childwelfare.gov/systemwide/laws_policies/statutes/reunifyall.pdf. 

346 Id.

347 Esme Noelle DeVault, “Reasonable Efforts Not So Reasonable: The Termination of the Parental Rights of a 

Developmentally Disabled Mother,” Roger Williams University Law Review 10 (2005): 764.

348 U.S. Government Accountability Office, Supra note 319.

349 DeVault, Supra note 347, 764.

350 Id. at 787.

351 UPenn Collaborative on Community Inclusion, “Supporting Parents with Psychiatric Disabilities: A Model 

Reunification Statute, accessed March 1, 2012, http://tucollaborative.org/pdfs/Toolkits_Monographs_

Guidebooks/parenting/A_Model_Reunification_Statute.pdf.

352 Id.

353 Bazelon Center for Mental Health Law, Termination of Parental Rights of Parents with Mental Disabilities, 

accessed December 2, 2011, http://www.napas.org/images/Documents/Issues/Community_integration

/NDRN_TPR_paper_2008.pdf.

354 Id.

355 Id.

356 865 So. 2d 1188 (Ala. Civ. App. 2003.

357 Margolin, Supra note 247, 152–153.

358 Id.

359 42 U.S.C. § 671.

360 Id.

361 Id. (emphasis added).

362 42 U.S.C. § 671(a)(15)(E).

363 Kathleen S. Bean, “Aggravated Circumstances, Reasonable Efforts, and ASFA,” Boston College Third World 

Law Journal 29 (2009): 226 (internal citations omitted).

364 42 U.S.C. § 671.

365 Bean, Supra note 363, 226–227.

366 See, e.g., Cal. Welf. & Inst. Code 361.5(b) (directing that “reunification services need not be provided to a 

parent or guardian ... when ... the parent or guardian is suffering from a mental disability ... that renders him or 

her incapable of utilizing those services”).

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 323
367 Child Welfare Information Gateway, Supra note 329.

368 Stefan, Supra note 136, 168.

369 Watkins, Supra note 68, 1444.

370 Vignette provided by Through the Looking Glass.

371 42 U.S.C. § 12132.

372 42 U.S.C. § 671(a)(15)(F); 45 C.F.R. § 1356.21(b)(4); 45 C.F.R. § 1356.21(i); 45 Fed. Reg. 4054 (Jan. 25, 2000).

373 Child Welfare Information Gateway, Concurrent Planning: What the Evidence Shows, (April 2005), 

http://www.childwelfare.gov/pubs/issue_briefs/concurrent_evidence/index.cfm.

374 Id.

375 Fred Wulczyn, “Family Reunification,” The Future of Children 14(1) (2004): 98.

376 Id.

377 Id.

378 Child Welfare Information Gateway, Supra note 345.

379 Id.

380 Id.

381 Jude T. Pannell, “Unaccommodated: Parents with Mental Disabilities in Iowa’s Child Welfare System and the 

Americans with Disabilities Act,” Drake Law Review 59 (2011): 1183.

382 Id. at 1184.

383 Glennon, Supra note 135, 280–281.

384 U.S. Department of Health and Human Services, Administration for Children and Families, Administration on 

Children, Youth and Families Children’s Bureau, Child Welfare Outcomes: 2006–2009, http://www.acf.hhs.gov

/programs/cb/pubs/cwo06-09/cwo06-09.pdf.

385 Bazelon Center for Mental Health Law, Supra note 353.

386 Bazelon Center for Mental Health Law, Supra note 353 (citing In re Adoption of Gregory, 747 N.E.2d 120, 125 

(Mass. 2001); In the Matter of Terry, No. 214617, 2000 WL 244425, *5 (Mich. Ct. App. Feb. 29, 2000); In re 

Antony B., 54 A.2d 893, 899 (Conn. App. Ct. 1999); In the Interest of B.K.F., 704 So.2d 314, 317 (La. Ct. App. 

1997); In re B.S., 693 A.2d 716, 720 (Vt. 1997)).

387 Bazelon Center for Mental Health Law, Supra note 353 (citing In re B.S., 693 A.2d at 721; see also In 

the Interest of Torrance P., 522 N.W.2d 243, 244–45 (Wis. Ct. App. 1994) (duty to make diligent effort to 

provide court-ordered services is defined by the TPR statute and not the ADA; ADA does not increase those 

responsibilities or dictate how they must be discharged)).

388 Bazelon Center for Mental Health Law, Supra note 353 (citing In re Doe, 60 P.3d 285, 293 (Haw. 2002)).

389 Bazelon Center for Mental Health Law, Supra note 353 (citing In the Matter of John D., 934 P.2d 308, 313-14 

(N.M. Ct. App. 1997) (ADA provides a defense to evidence of presumptive abandonment when parent can 

show that she or he lacked responsibility for the destruction of the parent-child relationship owing to the 

state’s violation of the ADA)).

390 Bazelon Center for Mental Health Law, Supra note 353 (citing In the Matter of J.B., No. 95CA1698, 1996 WL 

309979, *3 (Ohio Ct. App. 1996) (assuming without deciding that ADA applies to TPR proceedings); In re 

Caresse B., 1997 WL 133402, *5 (applying ADA); In the Interest of C.C., No. 95–1022, 1995 WL 810019, *5-7 

(Iowa Ct. App. Dec. 22, 1995) (applying ADA); In re Dependency of C.C., No. 40888-7-I, 1999 WL 106824, *5-6 

(Wash. Ct. App. Mar. 1, 1999) (applying ADA); J.T. v. Arkansas Dep’t of Hum. Servs., 947 S.W.2d 761, 766–68 

(Ark. 1997) (applying ADA); In re Karrlo K., 669 A.2d 1249, 1259 (Conn. Super. Ct. 1994) (applying ADA); In the 

Matter of K.D.W., No. C5-93-2262, 1994 WL 149450 (Minn. Ct. App. 1994) (applying ADA)).

391 Bazelon Center for Mental Health Law, Supra note 353 (citing In the Interest of K.K.W., No. CCL-86-2039, 

7 NDLR ¶ 111 (Tex. County Ct., Anderson County July 11, 1995) (state violated ADA by failing to modify its 

reunification services to ensure equally effective services to parent with schizophrenia; state provided only the 

homemaker services and six-week parenting class offered to parents without disabilities)).

392 Kundra and Alexander, Supra note 249, 145.

393 In re Kayla N., 900 A.2d 1202, 1208 (R.I. 2006).

324 National Council on Disability
394 Irving N. v. Rhode Island Dep’t of Children, Youth and Families, No. 06-603 (cert. petition filed Oct. 30, 2006), 

cert. denied, 127 S.Ct. 1372 (2007).

395 524 U.S. 206 (1998).

396 Bazelon Center for Mental Health Law, Supra note 353.

397 Watkins, Supra note 68, 1434.

398 Id.

399 Id.

400 Id.

401 Id. at 1435.

402 Id.

403 DeVault, Supra note 347, 786.

404 Id. (citing Watkins, Supra note 68, 1448).

405 Watkins, Supra note 68, 1438.

406 Id.

407 NBC Action News, “Blind Independence Couple Gets Newborn Back after 57 Days,” July 21, 2010, accessed 

November 28, 2011, http://www.nbcactionnews.com/dpp/news/local_news/blind-kansas-city-couple-getsnewborn-back-after-57-days.

408 Id.

409 Id.

410 Id.

411 Id.

412 Id.

413 Id.

414 Id.

415 Vignette provided by Through the Looking Glass.

416 Vignette provided by Through the Looking Glass.

417 Stefan, Supra note 136, 172–173.

418 Gwillim, Supra note 230, 343.

419 Lightfoot, Hill, and LaLiberte, Supra note 23, 928.

420 Id.

421 Watkins, Supra note 68, 1444.

422 Callow, Buckland, and Jones, Supra note 98.

423 Id. at 8.

424 Callow, Supra note 298, 135.

425 452 U.S. 18 (1981).

426 “A National Survey on a Parent’s Right to Counsel in Termination of Parental Rights and Dependency Cases,” 

accessed December 13, 2011, http://www.jrplaw.org/Documents/SurveyParentRighttoCounsel.pdf. 

427 Id.

428 Id.

429 Id.

430 ABA Resolution 112A (Aug. 7, 2006).

431 Id.

432 Id.

433 American Bar Association, “Indigent Parents Should Have Right to Counsel in Abuse and Neglect 

Cases, ABA Urges N.H. High Court,” December 13, 2011, http://www.abanow.org/2011/12/

indigent-parents-should-have-right-to-counsel-in-abuse-and-neglect-cases-aba-urges-n-h-high-court/.

434 Brief for the American Bar Association Amicus Curiae Supporting Petitioners, In re Christian M. and Alexander 

M., Case No. 2011-0647 (N.H. 2011), http://www.abanow.org/wordpress/wp-content/files_flutter/1323793110Inre-Christian-M-amicus-brief.pdf.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 325
435 Id.

436 McConnell and Llewellyn, Supra note 288, 891.

437 David McConnell and Gwynnyth Llewellyn, “Stereotypes, Parents with Intellectual Disability and Child 

Protection,” Journal of Social Welfare and Family Law 24(3) (2002): 309.

438 Id.

439 Callow, Buckland, and Jones, Supra note 98, 8.

440 Hayman, Jr., Supra note 286, 1243.

441 Teri L. Mosier, “‘Trying to Cure the Seven-Year Itch’: The ADA Defense in Termination of Parental Rights 

Actions,” Brandeis Law Journal 37 (1998): 785.

442 See Catherine R. Lawrence, Elizabeth A. Carlson, and Byron Egeland, “The Impact of Foster Care on 

Development,” Development and Psychopathology 18 (2006) 57.

443 Joseph Goldstein et al., Beyond the Best Interests of the Child (New York: Free Press, 1973).

444 Id.

445 Callow, Buckland, and Jones, Supra note 98, 8.

446 Id.

447 Id.

448 Id.

449 Stefan, Supra note 136, 172.

450 Nina Warsow, “Planned Failure: California’s Denial of Reunification Services to Parents with Mental 

Disabilities,” New York University Review of Law and Social Change 31 (2006): 218–219.

451 Id. at 219.

452 Callow, Buckland, and Jones, Supra note 98, 10–11.

453 Id.

454 Deborah Paruch, “The Orphaning of Underprivileged Children: America’s Failed Child Welfare Law and Policy,” 

Journal of Law and Family Studies 8 (2006): 144.

455 Congressional Coalition on Adoption Institute, “Facts and Statistics,” accessed March 1, 2012, 

http://www.ccainstitute.org/why-we-do-it-/facts-and-statistics.html.

456 Paruch, Supra note 454, 144.

457 Id. at 146.

458 Pam Fessler, “State Budget Cuts Threaten Child Welfare Programs,” NPR, March 2, 2010, http://www.npr.org

/templates/story/story.php?storyId=124127356. 

459 Paruch, Supra note 454, 146.

460 Theo Liebmann, “What’s Missing from Foster Care Reform? The Need for Comprehensive, Realistic, and 

Compassionate Removal Standards,” Hamline Journal of Public Law and Policy 28 (2006): 143.

461 Collentine, Supra note 261, 560–561.

462 Callow, Buckland, and Jones, Supra note 98, 11.

463 MIT News, “Kids Gain More from Family Than Foster Care.” July 3, 2007. http://web.mit.edu/newsoffice/2007

/sloan-fostercare-study-0703.html. 

464 Koch, Wendy, “Study: Troubled Homes Better Than Foster Care.” USA Today, July 3, 2007. 

http://www.usatoday.com/news/nation/2007-07-02-foster-study_N.htm. 

465 Golden and Macomber, Supra note 317, 28.

466 Id.

467 Vignette provided by Through the Looking Glass.

468 Watkins, Supra note 68, 1458.

469 Collentine, Supra note 261, 558–560.

470 Id.

471 Id.

472 Watkins, Supra note 68, 1458.

326 National Council on Disability
473 Stefan, Supra note 136, 142.

474 Watkins, Supra note 68, 1475.

475 “Department of the Interior, Bureau of Indian Affairs, FAQs,” accessed February 12, 2012, http://www.bia.gov

/FAQs/index.htm. 

476 B.J. Jones, chief judge, Sisseton-Wahpeton Sioux Tribal Court, “Role of Indian Tribal Courts in the Justice 

System,” a report to the Indian Country Child Trauma Center (2000): 1, accessed March 5, 2012. 

http://www.icctc.org/Tribal %20courts-final.pdf. 

477 National Urban Indian Family Coalition, “Urban Indian America: The Status of American Indian and Alaskan 

Native Children and Families Today,” a report to the Annie E. Casey Foundation (2008): 8, accessed March 5, 

2012, http://www.aecf.org/~/media/pubs. 

478 Eddie Brown et al., “The Indian Child Welfare Act: An Examination of State Compliance in Arizona,” Portland, 

Oregon National Indian Child Welfare Association/Casey Family Programs (2002).

479 Indian Child Welfare Act, 25 U.S.C. §1901(3)(4).

480 American Indian Disability Technical Assistance Center, “American Indians and Disability: Montana’s AIDTAC 

Program,” accessed March 5, 2012, http://www.america.gov/st/peopleplace-english/2006/November. 

481 Robert Hill, “An Analysis of Racial/Ethnic Disproportionality and Disparity at the National, State and Local 

Levels,” a report to the Casey Family Foundation (2007), accessed March 5, 2012. http://www.f2f.ca.gov/res

/pdf/AnalysisRacialEthnic.pdf. 

482 U.S. Census Bureau, “American FactFinder Fact Sheet: United States. 2005–2009 American Community 

Survey 5-Year Estimate,” accessed March 5, 2012, http://www.factfinder.census.gov/servlet/acssafffacts. 

483 Hill, Supra note 481.

484 Id.

485 California Indian Legal Services, “California Judges Bench Guide—The Indian Child Welfare Act,” accessed 

March 5, 2012, http.//www.cils.org/Benchguide/pdf. 

486 National Indian Child Welfare Association, “ICWA FAQs,” accessed March 5, 2012. http://www.nicwa.org

/Indian_Child_Welfare_Act/faq/. 

487 Ella Callow and Jean Jacob, The Perspectives and Demographics of Parents Contacting Through the Looking 

Glass’ Legal Program Regarding Custody Issues (unpublished tabulations from the 2008–2011 study) (data on 

file with Through the Looking Glass). 

488 U.S. Census, Supra note 482.

489 “Do Federal and State Employment Laws Apply to Tribes?” American Bar Association Web site, 

accessed March 5, 2012, http://www.abar.org/tips/wami/galuda.pdf; California Indian Legal Services, Supra 

note 485.

490 Diane DePanfilis and Howard Girvin, “Investigating Child Maltreatment in Out-of-Home Care: Barriers to Good 

Decision-Making,” Children and Youth Services Review 27 (2005): 353–374; Diane J. English et al., “Causes 

and Consequences of the Substantiation Decision in Washington State Child Protective System,” Child and 

Youth Services Review 24 (2002): 817–851.

491 Traci LaLiberte and Elizabeth Lightfoot, “The Child Welfare System; Children and Families with Disabilities 

Navigating the System” IMPACT (2006), accessed March 5, 2012. http://ici.umn.edu/products/impact/191

/default.html.

492 Gwynnyth Llewellyn et al., “Support and Service Needs of Parents with Intellectual Disability,” The British 

Journal of Developmental Disabilities XLII (1996): 45; Robyn Mildon, “Understanding and Supporting Parents 

with Learning Difficulties,” Victorian Parenting Centre (2003).

493 Marian Harris and Wanda Hackett, “Decision Points in Child Welfare: An Action Research Model to Address 

Disproportionality,” Children and Youth Services Review 30 (2008): 199–215.

494 Julie Clay and Alan Fugleberg, “The Concept of Disability, Health Issues, and Disability Rates in Native 

American Communities: Important Considerations for BPAO Benefits Specialists.” Issues Brief 3, for the 

TANAC Project (2006).

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 327
495 National Indian Child Welfare Association, “The Status of Child Abuse and Neglect Prevention in American 

Indian Communities,” accessed March 5, 2012, http://www.nicwa.org/resources/library/abuse

/statusofchildabuse.pdf. 

496 Sara Olkon, “Disabled Mom Fighting to Keep Her Son,” Chicago Tribune, December 20, 2009, http://articles

.chicagotribune.com/2009-12-20/news/0912190290_1_disabled-parents-custody-mom.

497 Through the Looking Glass, Legal Program, “Battle for the Rattle: A Soldier Mom Story of Custody Court, 

Disability, and Mothering,” accessed December 2, 2011, http://pwd-legalprogram.org/Battle-for-the-Rattle.html.

498 Olkon, Supra note 496.

499 Id.

500 Id.

501 Sarah Schulte, “Disabled Single Mom Talks about Challenges of Raising Son,” ABC 7 Chicago May 4, 2011, 

http://abclocal.go.com/wls/story?section=news/local&id=8112269. 

502 Id.

503 28 C.F.R. 42.503.

504 Tennessee v. Lane, 541 U.S. 509,531 (2004).

505 28 C.F.R. § 35130(b).

506 28 C.F.R.§ 35.130(b)(7).

507 28 C.F.R § 35.130(d).

508 28 C.F.R. § 35.130(b)(8).

509 28 C.F.R. § 35.160(a)(1),(b)(1), 28 C.F.R. § 35.164.

510 28 C.F.R. § 35.130(c).

511 28 C.F.R. § 35.130(f).

512 28 C.F.R. § 35.149.

513 “Title II Highlights,” U.S. Department of Justice, Civil Rights Division, Disability Rights Section, last modified 

August 29, 2002, http://www.ada.gov/t2hlt95.htm.

514 28 C.F.R. §36.303(a).

515 28 C.F.R. § 36.302(a).

516 28 C.F.R. § 36.303(a).

517 University of Washington Daily, “More to Marriage than It Seems,” accessed March 2, 2012, http://dailyuw

.com/news/2007/feb/09/more-to-marriage-than-it-seems.html. 

518 In re Carney, 598 P.2d 36 (Cal. 1979).

519 Carney at 44.

520 Shade, Supra note 65, 159.

521 Ella Callow, Demographic and Statistical Study of Legal Program Consumers, (2008) (not yet published; data 

on file with Through the Looking Glass). 

522 Alicia Gallegos, “What Should Doctors Do When Ill Caregivers Can’t Perform Their Duties?” American Medical 

News, October 24, 2011, http://www.ama-assn.org/amednews/2011/10/24/prca1024.htm.

523 Id.

524 Id.

525 Courtney Hutchison, “Judge Cites Mom’s Breast Cancer in Denying Custody of Children.” 

ABC News Medical Unit, May 10, 2011, http://abcnews.go.com/Health/BreastCancerCenter/

north-carolina-mom-breast-cancer-loses-custody/story?id=13546870.

526 Id.

527 Megan Kirshbaum, Daniel Taube, and Rosalind Lasian Baer, “Parents with Disabilities: Problems in Family 

Court Practice,” Journal of the Center for Families, Children and the Courts 4 (2003): 38

528 Id. at 31.

529 Id. at 32.

530 595 N.W.2d 1 (N.D. 1999).

328 National Council on Disability
531 Kirshbaum, Taube, and Baer, Supra note 527, 32–33.

532 Sherisse Pham, “California Judge Says Paralyzed Mother Has Right to Visits With Her Children.” ABC News, 

March 25, 2011, http://abcnews.go.com/US/paralyzed-mother-abbie-dorn-annual-visitation-rights-children

/story?id=13223968#.TtPe0kdTdaU.

533 Id.

534 Id.

535 Id.

536 Id.

537 Pseudonym used to protect confidentiality. In-person conversation, January 20, 2012.

538 Kirshbaum, Taube, and Baer, Supra note 527, 33–34.

539 Melanie Yergeau, “Circle Wars: Reshaping the Typical Autism Essay,” Disability Studies Quarterly 30(1) (2010), 

http://dsq-sds.org/article/view/1063/1222. 

540 Kimberly Rogers et al., “Who Cares? Revisiting Empathy in Asperger Syndrome,” Journal of Autism and 

Developmental Disabilities 37 (2007): 709–715, http://www.cog.psy.ruhr-uni-bochum.de/papers/2007/Rogers 

%282007 %29_JAutismDevDisord.pdf; Sheila Jennings Linehan and Jan Schloss, “Who’s Minding the 

Children? Child Contact and the Neurologically Impaired Parent,” Journal of International Family Law 4 (2003): 

205–209, http://www.familymattersassociates.ca/images/WhosMindingtheChildrenInternationalFamilyLaw.pdf. 

541 Id.; Sheila K. Jennings, “High Conflict and Asperger’s Syndrome,” Mediate.com (2003), http://web.archive.org

/web/20100111025800/http://www.mediate.com/articles/linehan_s1.cfm#bio. 

542 Autism Self Advocacy Network, “Cassandra’s Impact on Autistic Victims of Domestic Violence” (2009), 

http://autisticadvocacy.org/2009/05/cassandras-impact-on-autistic-victims-of-domestic-violence. 

543 Jennifer Spreng, “The Private World of Juvenile Court: Mothers, Mental Illness and the Relentless Machinery 

of the State,” Duke Journal of Gender Law and Policy 17 (2010): 196.

544 Callow, Buckland, and Jones, Supra note 98, 3.

545 Id.

546 Kirshbaum, Taube, and Baer, Supra note 527, 37.

547 Id. at 37–38.

548 Duffy Dillon, “Child Custody and the Developmentally Disabled Parent,” Wisconsin Law Review 2000 (2000): 

130–131.

549 Breeden, Olkin, and Taube, Supra note 95, 445.

550 Kirshbaum, Taube, and Baer, Supra note 527, 31.

551 Id. at 38.

552 Id.

553 Id.

554 Id. at 40.

555 Vignette provided by Through the Looking Glass.

556 Dillon, Supra note 548, 147.

557 Id. at 147–148.

558 Id.

559 Vignette provided by Through the Looking Glass.

560 Dillon, Supra note 548, 149.

561 Kirshbaum, Taube, and Baer, Supra note 499, 28.

562 Id.

563 Id.

564 Id.

565 Id.

566 Hayman, Jr., Supra note 286, 1242.

567 Kirshbaum, Taube, and Baer, Supra note 527, 35–36.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 329
568 Id.

569 Id.

570 Id.

571 Id. at 36.

572 Id. at 35.

573 Legal Services Corporation, “Congress Votes for $348 million in LSC Funding,” November 21, 2011, 

http://www.lsc.gov/media/press-releases/congress-votes-348-million-lsc-funding. 

574 Legal Services Corporation, “Staff Reductions Hit Legal Aid Programs,” January 26, 2012, http://www.lsc.gov

/media/press-releases/staff-reductions-hit-legal-aid-programs. 

575 Dillon, Supra note 548, 146.

576 Kirshbaum, Taube, and Baer, Supra note 527, 35.

577 Elana Nightingale Dawson, “Lawyers’ Responsibilities Under the ADA: Ensuring Effective Communication 

Access for the Deaf and Hard of Hearing,” Valparaiso University Law Review 45(3) 2011: 1143.

578 Kirshbaum, Taube, and Baer, Supra note 527, 36.

579 Id. at 37.

580 Id.

581 Id.

582 Id.

583 Callow, Buckland, and Jones, Supra note 98, 12.

584 Id.

585 Id. at 1.

586 Robert D. Zaslow, “Child Custody, Visitation, and the HIV Virus: Revisiting the Best Interests Doctrine to Insure 

Impartial Parental Rights Determinations for HIV-Infected Parents,” Journal of Pharmacy and Law 3 (1994): 64.

587 Margaret A Nosek et al., “Vulnerabilities for Abuse Among Women with Disabilities, Sexuality and Disability

19(3) 2001: 177–189.

588 Daniel W. Shuman, “The Role of Mental Health Experts in Custody Decisions: Science, Psychological Tests, 

and Clinical Judgment,” Family Law Quarterly 36 (2002): 135–162. 

589 American Psychological Association, “Guidelines for Child Custody Evaluations in Family Law Proceedings,” 

American Psychologist 65(9) (2010): 863–867. 

590 “Guidelines for Psychological Evaluations in Child Protection Matters,” last modified 2011, http://www.apa.org

/practice/guidelines/child-protection.pdf. 

591 Shuman, Supra note 588; Robert E. Emery, Randy K. Otto, and William T. O’Donohue, “A Critical Assessment 

of Child Custody Evaluations: Limited Science and a Flawed System,” Psychological Science in the Public 

Interest 6 (2005): 1–29; Gary B. Melton et al., Psychological Evaluations for the Courts: A Handbook For 

Mental Health Professionals and Lawyers, 3rd ed. (New York: Guilford Press 2007), 494–538; Breeden, Olkin, 

and Taube, Supra note 95, 445–455. 

592 McWey, Henderson, and Tice, Supra note 336, 195.

593 Id. at 202.

594 Id. at 202 (internal citations omitted).

595 American Psychological Association, Supra note 589, 863–867; “Guidelines for Psychological Evaluations”; 

American Psychological Association, “Guidelines for Assessment of and Intervention with Persons with 

Disabilities,” American Psychologist 67(1) (2012): 43–62. 

596 American Psychological Association, Supra note 589, 865. 

597 “Guidelines for Psychological Evaluations.”

598 American Psychological Association, Supra note 595. 

599 Kay, Supra note 273, 33.

600 Benjamin E. Fife, A Study of the Quality of Psychological Assessments of Parents with Disabilities Involved in 

Termination of Parental Rights Cases (Berkeley, CA: Wright Institute, 2010). 

330 National Council on Disability
601 Id. at 149.

602 29 U.S.C. § 794.

603 Mary Anne Nester, “Psychometric Testing and Reasonable Accommodations for Persons with Disabilities,” 

in Susanne M. Bruyere and Janet O’Keefe (Eds.), Implications of the Americans with Disabilities Act for 

Psychology (p. 25) (Washington DC: Springer Publishing Co., 1994).

604 Timothy R. Elliott and Robert L. Umlauf, “Measurement of Personality and Psychopathology Following 

Acquired Physical Disability,” in L.A. Cushman and M.J. Scherer (Eds.), Psychological Assessment in Medical 

Rehabilitation (pp. 325–358) (Washington, DC: American Psychological Association, 1995); Jonathan Sandoval, 

“Testing in a Changing World: An Introduction,” in Jonathan Sandoval et al. (Eds.), Test Interpretation and 

Diversity: Achieving Equity in Assessment (pp. 3–16) (Washington, DC: American Psychological Association, 

1999); American Psychological Association, “Guidelines for Assessment.” 

605 Rhoda Olkin, What Psychotherapists Should Know About Disability (New York: Guilford Press 1999), 210.

606 David M. Brodzinsky, “On The Use and Misuse of Psychological Testing in Child Custody Evaluations,” 

Professional Psychology: Research and Practice 24(2) (1993): 213–219; Mark W. Roberts, “ACCESS,” in Barbara 

S. Plake and James C. Impara (Eds.), The Fourteenth Mental Measurements Yearbook (pp. 1–4) (Lincoln, NE: 

Buros Institute of Mental Measurements, 2001); Emery, Otto, and O’Donohue, Supra note 591, 1–29; James 

N. Bow et al., “Testing in Child Custody Evaluations – Selection, Usage, and Daubert Admissibility: A Survey 

of Psychologists,” Journal of Forensic Psychology Practice 6(2) (2006): 17–38; Melton et al., Supra note 591; 

Breeden, Olkin, and Taube, Supra note 95.

607 “Guidelines for Psychological Evaluations.”

608 Esther Strauss, Elisabeth M.S. Sherman, and Otfried Spreen, A Compendium of Neuropsychological Tests, 3rd 

ed. (Oxford: Oxford University Press, 2006).

609 Benjamin Fife and Megan Kirshbaum, “Norms and Validity of Tests and Measures Used in Custody Situations 

with Parents with Disabilities” (unpublished raw data, 2012). 

610 McConnell and Llewellyn, Supra note 437, 309. 

611 Jennifer A. Culhane, “A Challenge of California Family Code Section 7827: Application of This Statute Violates 

the Fundamental Rights of Parents Who Have Been Labeled Mentally Disabled,” Whittier Journal of Child and 

Family Advocacy 3 (2003): 142.

612 Lawless, Supra note 229, 514.

613 McConnell and Llewellyn, Supra note 437, 885.

614 Teresa Ostler, Assessment of Parenting Competency in Mothers with Mental Illness (Baltimore, MD: Paul H. 

Brookes Publishing Co., 2008). 

615 Alexander J. Tymchuck and Maurice Feldman, “Parents with Mental Retardation and Their Children: Review of 

Research Relevant to Professional Practice,” Canadian Psychology 32 (3) (1991): 492.

616 Fife, Supra note 600.

617 Melton et al., Supra note 591.

618 Breeden, Olkin, and Taube, Supra note 95.

619 Irene W. Leigh et al., “Providing Psychological Services to Deaf Individuals: A Response to New Perceptions 

of Diversity,” Professional Psychology: Research and Practice 27(4) (1996): 364–371; Michael J. Rubino III, 

“Psychologists’ Clinical Judgments About Female Client with a Visible Disability, Hidden Disability or No 

Disability” (PhD diss., California School of Professional Psychology, 2001); Rhoda Olkin and Constance Pledger, 

“Can Disability Studies and Psychology Join Hands?” American Psychologist 58(4) (2003): 296–304; Diane L. 

Strike, Thomas M. Skovholt, and Thomas J. Hummel, “Mental Health Professionals’ Disability Competence: 

Measuring Self-Awareness, Perceived Knowledge, and Perceived Skills,” Rehabilitation Psychology 49(4) 

(2004): 321–327; Breeden, Olkin, and Taube, Supra note 95.

620 Olkin, Supra note 605; Olkin and Pledger, Supra note 619.

621 Olkin and Pledger, Supra note 619; Irene W. Leigh et al., “Survey of Psychological Services to Clients With 

Disability: The Need for Awareness,” Rehabilitation Psychology 49(1) (2004): 48–54.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 331
622 American Psychological Association, “Guidelines for Assessment.”

623 American Psychological Association, Supra note 589, 865.

624 “Guidelines for Psychological Evaluations.” 

625 Breeden, Olkin, and Taube, Supra note 95.

626 “Guidelines for Psychological Evaluations.” 

627 Fife, “Psychological Assessments.”

628 Megan Kirshbaum, “Expert Witness Reports for Court” (unpublished raw data, 2012).

629 Kirshbaum, Taube, and Baer, Supra note 527; Fife, Supra note 600; Kirshbaum, Supra note 628. 

630 Fife, Supra note 600; Kirshbaum, Supra note 628.

631 Id.

632 Fife, Supra note 600.

633 Id.; Kirshbaum, Taube, and Lasian Baer, Supra note 527. 

634 Id.

635 Fife, Supra note 600.

636 Kathryn A. LaFortune and Bruce N. Carpenter, “Custody Evaluations: A Survey of Mental Health 

Professionals,” Behavioral Sciences and the Law 16(2) (1998): 207–224; James N. Bow and Francella A. 

Quinnell, “Psychologists’ Current Practices and Procedures in Child Custody Evaluations: Five years After 

American Psychological Association Guidelines,” Professional Psychology: Research and Practice 32(3) (2001): 

261–268.

637 C.A. Ahern and C.M. Grandison, “Inclusivity in Developmental Neuropsychological Assessment,” in E. Fenichel 

(Ed.), Responding to Infants and Parents: Inclusive Interaction in Assessment, Consultation, and Treatment in 

Infant/Family Practice (pp. 23–27) (Washington, DC:, Zero to Three, 2000).

638 Fife, Supra note 600.

639 B.M. Schutz et al., Solomon’s Sword: A Practical Guide to Conducting Child Custody Evaluations (San 

Francisco: Jossey-Bass, 1989), 78.

640 Breeden, Olkin, and Taube, Supra note 95.

641 American Psychological Association, “Guidelines for Assessment,” 52.

642 Kirshbaum, Taube, and Baer, Supra note 527; Fife, Supra note 600; Kirshbaum Supra note 628. 

643 Breeden, Olkin, and Taube, Supra note 95.

644 Ronald M. Ruff, “A Friendly Critique of Neuropsychology: Facing the Challenges of Our Future,” Archives of 

Clinical Neuropsychology 18(8) (2003): 847–864.

645 Oliver Sacks, Seeing Voices: A Journey Into the World of the Deaf (Berkeley, CA: University of California Press, 

1989).

646 Paul Preston, Mother Father Deaf: Living Between Sound and Silence (Cambridge, MA: Harvard University 

Press, 1994). 

647 Kathie Corbus and Sherrie Hansen, Strategies and Adaptations in Working with Parents with Intellectual 

Disabilities (Berkeley, CA: Through the Looking Glass, 2006).

648 Kirshbaum, Supra note 628.

649 Megan Kirshbaum, “Evaluating Evaluations of Parents with Intellectual Disabilities – Guidelines for Improving 

Practice”, paper presented at the annual meeting of Zero to Three, Leadership Initiative, National Training 

Institute, Washington, DC, 2000.

650 Kirshbaum, Supra note 628.

651 Fife, Supra note 600. 

652 Kirshbaum and Olkin, Supra note 34, 65–80. 

653 American Psychological Association, “Guidelines for Assessment.”

654 Through the Looking Glass, Developing Adaptive Equipment and Adaptive Techniques for Physically Disabled 

Parents and Their Babies Within the Context of Psychosocial Services (Berkeley, CA: Through the Looking 

Glass, 1995); Christi Tuleja et al., Continuation of Adaptive Parenting Equipment Development (Berkeley, 

332 National Council on Disability
CA: Through the Looking Glass, 1998); Christi Tuleja and Anitra DeMoss, “Baby Care Assistive Technology,” 

Technology and Disability 11(1, 2) (1999): 71–78; Anitra DeMoss et al., Adaptive Parenting Equipment: 

Evaluation, Development, Dissemination and Marketing (Berkeley, CA: Through the Looking Glass, 2000).

655 Megan Kirshbaum, “A Disability Culture Perspective on Early Intervention with Parents with Physical or 

Cognitive Disabilities and Their Infants,” Infants and Young Children 13(2) (2000): 9–20.

656 Corbus and Hansen, Supra note 647.

657 Kirshbaum, Supra note 655.

658 Conley-Jung and Olkin, Supra note 290, 14–29; Debbie Bacon, Hands-On Parenting: A Resource Guide for 

Parents Who Are Blind or Partially Sighted (Berkeley, CA: Through the Looking Glass, 2006).

659 Maurice A. Feldman, Joseph M. Ducharme, and Laurie Case, “Using Self-Instructional Pictorial Manuals to 

Teach Child-Care Skills to Mothers with Intellectual Disabilities,” Behavior Modification 23(3) (1999): 480–497; 

Maurice A. Feldman and Laurie Case, “Teaching Child-Care and Safety Skills to Parents with Intellectual 

Disabilities Through Self-Learning,” Journal of Intellectual and Development Disability 24(1) (1999): 27–44; 

Gwynnyth Llewellyn et al., ”Promoting Health and Home Safety for Children of Parents with Intellectual 

Disability: A Randomized Controlled Trial,” Research in Developmental Disabilities 24(6) (2003): 405–431; 

Helen James, “Promoting Effective Working with Parents with Learning Disabilities,” Child Abuse Review 13(1) 

(2004): 31–41. 

660 Kirshbaum, Supra note 655.

661 Kirshbaum, Supra note 628.

662 Kirshbaum, Taube, and Baer, Supra note 527; Fife Supra note 600.

663 Megan Kirshbaum, “Babycare Assistive Technology for Parents with Physical Disabilities: Relational, Systems 

& Cultural Perspectives,” American Family Therapy Academy Newsletter 67 (1997): 20–26.

664 Breeden, Olkin, and Taube, Supra note 95, 445–455; Fife, Supra note 600.

665 Kirshbaum, Supra note 628.

666 Id.

667 Kirshbaum, Supra note 663. 

668 Megan Kirshbaum, “Parents with Physical Disabilities and Their Babies,” Zero to Three 8(5) (1988): 8–15.

669 Megan Kirshbaum, “Serving Families with Disability Issues: Through the Looking Glass,” Marriage and Family 

Review 21(1–2) (1995): 9–28.

670 Preston, Mother Father Deaf.

671 Kirshbaum, Supra note 628.

672 Kirshbaum, Supra note 663. 

673 Kirshbaum, Taube, and Baer, Supra note 527, 40.

674 Kirshbaum, Taube, and Baer, Supra note 527; Breeden, Olkin, and Taube, Supra note 95; Fife, Supra note 600.

675 McConnell and Llewellyn, Supra note 437, 297–317.

676 American Psychological Association, “Guidelines for Assessment.”

677 “Baby Care Assessment Tool,” Disability, Pregnancy and Parenthood International 59 (2007).

678 Anonymous interview with parent and Judith Rogers by Megan Kirshbaum, December 29, 2011, Berkeley, CA.

679 Pseudonym used to protect confidentiality. Instant message conversation, October 5, 2011.

680 Hanan, Supra note 101, 167–168.

681 Id.

682 DeVries, Supra note 103, 141–142.

683 Id.

684 Shauna L. Gardino, Andrew E. Russell, and Teresa K. Woodruff, “Adoption After Cancer: Adoption Agency 

Attitudes and Perspectives on the Potential to Parent Post-Cancer,” author manuscript, Cancer Treatment and 

Research, 156 (2010): 153–170.

685 DeVries, Supra note 103, 144–145.

686 Id.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 333
687 Child Welfare Information Gateway, Supra note 106.

688 Hanan, Supra note 101, 174–175.

689 Mills, Supra note 108, 73–74.

690 Child Welfare Information Gateway, Supra note 109.

691 Id.

692 Id.

693 Id.

694 Id.

695 Id.

696 Id.

697 Id.

698 Id.

699 Id.

700 Id.

701 Id.

702 Id.

703 Id.

704 Id.

705 Mark T. McDermott, “Independent Adoption,” The Adoption Guide, accessed February 24, 2012, 

http://www.theadoptionguide.com/options/articles/independent-adoption.

706 Child Welfare Information Gateway, Supra note 109.

707 Id.

708 Id.

709 Child Welfare Information Gateway, “Use of Advertising and Facilitators in Adoptive Placements: Summary of 

State Laws,” (April 2009), http://www.childwelfare.gov/systemwide/laws_policies/statutes/advertisingall.pdf.

710 Kleiman, Supra note 110, 327.

711 Adoption.com, Supra note 111. 

712 DeVries, Supra note 103, 138–139.

713 Id.

714 Child Welfare Information Gateway, Supra note 109.

715 Id.

716 Id.

717 Child Welfare Information Gateway, Supra note 115.

718 Id.

719 Id.

720 Hague Conference on Private International Law, Supra note 118. 

721 See Child Welfare Information Gateway, Supra note 115.

722 42 U.S.C. § 12131 et seq.

723 42 U.S.C. § 12181.

724 28 C.F.R. § 36.104.

725 28 C.F.R. § 36.204.

726 28 C.F.R. § 36.301(a).

727 Madelyn Freundlich, “The Americans with Disabilities Act: What Adoption Agencies Need to Know, The Evan B. 

Donaldson Adoption Institute, accessed February 24, 2012, http://www.adoptioninstitute.org/policy/ada.html.

728 Id.

729 345 F.3d 593 (2003).

730 Linda A. Cronin, “Adoption Odyssey: Finding a Foreign Child to Love,” Action Online: Magazine of the United 

Spinal Association, May 2007, http://www.unitedspinal.org/publications/action/2007/05/18/adoption-odysseyfinding-a-foreign-child-to-love.

334 National Council on Disability
731 DeVries, Supra note 103, 146.

732 Elizabeth Bartholet, “What’s Wrong with Adoption Law?” International Journal of Children’s Rights 4 (1996): 

265–266.

733 Shade, Supra note 65, 182.

734 Freundlich, Supra note 727.

735 Id.

736 Gardino, Russell, and Woodruff, Supra note 684, 153–170.

737 Id.

738 Id.

739 Pseudonym used to protect confidentiality. Telephone conversation, October 5, 2011.

740 Bartholet, Supra note 732, 265–266.

741 Id.

742 Kimberly A. Collier, “Love v. Love Handles: Should Obese People be Precluded from Adopting a Child Solely 

Upon their Weight?” Texas Wesleyan Law Review 15 (2008): 38–39.

743 Id.

744 Id.

745 Disaboom, “Parents with Disabilities: The Moms’ Network Shares Info, Resources,” accessed November 15, 

2011. http://www.disaboom.com/parents-with-disabilities/parents-with-disabilities-the-quotmomsnetworkquot-shares-info-resources.

746 Id. at 185–186.

747 Id. at 189–190.

748 Id. at 184.

749 Id. at 185–186.

750 Id. at 188.

751 Id.

752 Id.

753 Id.

754 Id.

755 Id. at 189.

756 Id.

757 Id.

758 Gardino, Russell, and Woodruff, Supra note 684, 153–170.

759 Id.

760 Pseudonym used to protect confidentiality. Telephone conversation, October 3, 2011.

761 Mills, Supra note 108, 104–105.

762 Freundlich, Supra note 727.

763 28 C.F.R. §§ 35.130(h), 36.301.

764 Id. at §§ 35.139, 36.208.

765 Freundlich, Supra note 727.

766 21 F.Supp.2d 235 (DNY 1998).

767 Hanan, Supra note 101, 213–216; See Mich. Comp. Laws Ann. § 722.957.

768 Id.

769 Wis. Stat. § 48.82(4)-(6) 48.82.

770 Idaho Code Ann. § 16-1501.

771 Idaho Code Ann. § 16-1501B.

772 Associated Press, “Va. Board Allows Adoption Agencies to Discriminate Based on Sexual Orientation, Other 

Factors,” Washington Post, December 15, 2011. http://www.washingtonpost.com/local/va-board-to-addressregs-that-would-strip-protections-against-discrimination/2011/12/14/gIQAT3hYtO_story.html. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 335
773 Id.

774 N.D. Cent. Code § 50-12-03.

775 U.S. Department of Health and Human Services, “Protection from Race, Color, and National Origin 

Discrimination in Adoption and Foster Care,” accessed February 17, 2012, http://www.hhs.gov/ocr/civilrights

/resources/specialtopics/adoption/index.html. 

776 Department of Justice, “Nevada Foster Care Agency Agrees to Provide Effective Communication with Deaf 

Mother who Seeks to be a Foster Parent,” March 20, 2002, http://www.justice.gov/opa/pr/2002/March/02_

crt_164.htm.

777 Id.

778 Id.

779 42 U.S.C. § 1996b.

780 59 Cal. Rptr. 323 (Ct. App. 1967).

781 Id. at 327.

782 Id. at 328.

783 Mills, Supra note 108, 69.

784 Id.

785 National Adoption Center, “Make Disabled Parent Adoption Happen.” Accessed November 15, 2011. 

http://www.adopt.org/assembled/disabled_parents.html.

786 Kleiman, Supra note 110, 344–347.

787 Cronin, Supra note 730.

788 Ella Callow, The Adoption Guide for Parents with Disabilities (Berkeley, CA: Through the Looking 

Glass, 2008), 6.

789 U.S. Department of State, “China, Intercountry Adoption,” Accessed November 21, 2011. http://adoption.state

.gov/country_information/country_specific_info.php?country-select=china.

790 U.S. Department of State, “Statistics—Intercountry Adoption,” accessed March 1, 2012, http://adoption.state

.gov/about_us/statistics.php.

791 U.S. Department of State, Supra note 789.

792 U.S. Department of State, “Russia, Intercountry Adoption,” accessed March 1, 2012, http://adoption.state.gov

/country_information/country_specific_info.php?country-select=russia. 

793 U.S. Department of State, “Ukraine, Intercountry Adoption,” accessed March 1, 2012, http://adoption.state

.gov/country_information/country_specific_info.php?country-select=ukraine.

794 Kids to Adopt, “Bulgaria Adoption Program,” Accessed December 15, 2011. http://kidstoadopt.org/adoptionprograms/bulgaria-adoption/. See also U.S. Department of State, “Bulgaria, Intercountry Adoption,” 

Accessed December 15, 2011. http://adoption.state.gov/country_information/country_specific_info.

php?country-select=bulgaria. 

795 Pseudonym used to protect confidentiality. Telephone conversation, October 3, 2011.

796 Adoption101.com, “International Adoption,” accessed March 21, 2012, http://www.adoption101.com

/international_adoption.html. 

797 Id.

798 Cronin, Supra note 730.

799 Id.

800 Pseudonym used to protect confidentiality. Telephone conversation, October 6, 2011.

801 Cronin, Supra note 730.

802 Id.

803 Colleen Mastony, “Blind Couple Step Out as Parents,” Chicago Tribune, May 11, 2011, http://articles

.chicagotribune.com/2011-05-11/news/ct-met-blind-adopting-blind-20110511_1_rupa-cta-buspaula-sprecher.

804 Id.

336 National Council on Disability
805 Id.

806 Colorado Cross-Disability Coalition, “Rocky Mountain Women’s Health Care,” accessed December 2, 2011, 

http://www.ccdconline.org/legal-case/07-28-2009/rocky-mountain-womens-health-care.

807 Id.

808 Id.

809 Id.

810 Id.

811 Id.

812 “Blind Woman Loses Federal Discrimination Lawsuit Against Fertility Clinic,” USA Today, November 21, 2003, 

http://www.usatoday.com/news/nation/2003-11-21-fertility-lawsuit_x.htm.

813 Id.

814 Id.

815 Kimberly L. Mutcherson, “Disabling Dreams of Parenthood: The Fertility Industry, Anti-Discrimination, and 

Parents with Disabilities,” Law and Inequality 27 (2009): 347.

816 “Frequently Asked Questions about Infertility,” American Society for Reproductive Medicine, accessed 

February 9, 2012, http://www.asrm.org/awards/index.aspx?id=3012.

817 “Intrauterine Insemination,” American Society for Reproductive Medicine, accessed February 2, 2012, 

http://www.asrm.org/topics/detail.aspx?id=1277. 

818 Shade, Supra note 65, 169–170.

819 Id.

820 Id. at 168–169.

821 “ART Fact Sheet,” European Society of Human Reproduction and Embryology, last modified June 2010, 

http://www.eshre.eu/ESHRE/English/Guidelines-Legal/ART-fact-sheet/page.aspx/1061. 

822 Shade, Supra note 65, 169–170.

823 “Personhood Legislation,” Resolve: The National Infertility Association, last modified October 2010, 

http://www.resolve.org/about/personhood-legislation.html. 

824 Thomas D. Flanigan, “Assisted Reproductive Technologies and Insurance under the Americans with Disabilities 

Act,” Brandeis Law Journal 38 (2000): 777.

825 Jaime Anno, “Regulating ‘Choice;’ Sterilization Abuse in the United States, Then and Now,” Reproductive 

Justice Briefing Book: A Primer on Reproductive Justice and Social Change (New York: Pro-Choice Public 

Education Project, 2007), http://protectchoice.org/downloads/Reproductive %20Justice %20Briefing 

%20Book.pdf.

826 Judith F. Daar, “Accessing Reproductive Technologies: Invisible Barriers, Indelible Harms,” Berkley Journal of 

Gender, Law and Justice, 23(1) (2008): 73.

827 Carrie Killoran, “Women with Disabilities Having Children: It’s Our Right Too,” Sexuality and Disability 12 (2) 

(1994): 122.

828 National Council on Disability, The Current State of Health Care for People with Disabilities (Washington, DC: 

2009), http://www.ncd.gov/publications/2009/Sept302009. 

829 Id.

830 Id.

831 Id.

832 Coleman, Supra no. 2, 20.

833 42 U.S.C. § 12181.

834 Id.

835 Skinner v. Oklahoma, 316 U.S. 535, 541 (1942).

836 Mutcherson, Supra note 815, 311.

837 Id. at 311, 313.

838 Id. at 311.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 337
839 Id. at 313.

840 Shade, Supra note 65, 170–171.

841 Id.

842 Id.

843 Id.

844 Id.

845 Id. at 171–172.

846 Id.

847 Mutcherson, Supra note 815, 316–317.

848 Id.

849 Mutcherson, Supra note 815, 312.

850 42 U.S.C.A. § 12182(b)(3); See, e.g., Jairath v. Dyer, 972 F.Supp. 1461, 1469 (N.D. Ga. 1997) (“The legality of 

the defendant’s medical decision not to treat plaintiff therefore depends on whether the cosmetic surgery 

actually posed a ‘direct threat’ to plaintiff’s health.”).

851 28 C.F.R. § 36.208.

852 Id.

853 Mutcherson, Supra note 815, 343.

854 Id. at 343–344.

855 Id.

856 Id.

857 Id.

858 Id.

859 Id.

860 Id.

861 Id. at 177.

862 Id.

863 28 C.F.R. § 36.208.

864 Elizabeth Pendo, “Disability, Equipment Barriers, and Women’s Health: Using the ADA to Provide Meaningful 

Access,” Saint Louis University Journal of Health Law and Policy 2 (2008): 43.

865 Id.

866 Id.

867 Pseudonym used to protect confidentiality. Telephone conversation, October 7, 2011.

868 Pseudonym used to protect confidentiality. Telephone conversation, November 1, 2011.

869 Center for Genetics and Society, “Assisted Reproductive Technologies: Overview and Perspective Using a 

Reproductive Justice Framework,” accessed February 9, 2012, http://www.geneticsandsociety.org/downloads

/ART.pdf.

870 Our Bodies Ourselves, “Prenatal Testing and Disability Rights,” accessed February 9, 2012, 

http://www.ourbodiesourselves.org/book/companion.asp?id=21&compID=43.

871 Id.

872 Global Library of Women’s Medicine, “Gynecologic and Obstetric Issues Confronting Women with Disabilities,” 

accessed January 27, 2012, http://www.glowm.com/index.html?p=glowm.cml/section_view&articleid=76.

873 Mutcherson, Supra note 815, 364.

874 John A. Robertson, “Procreative Liberty and Offspring in Assisted Reproduction,” American Journal of Law 

and Medicine 30 (2004): 11.

875 Killoran, Supra note 827, 124.

876 Mutcherson, Supra note 815, 311.

877 Shade, Supra note 65, 179–180.

338 National Council on Disability
878 Id.

879 Id.

880 M. Spriggs and T. Charles, “Should HIV-Discordant Couples Have Access to Assisted Reproductive 

Technologies?” Journal of Medical Ethics, January 25, 2012, p. 326

881 Id.

882 Id.

883 Mutcherson, Supra note 815, 314.

884 American Society for Reproductive Medicine, “Child-Rearing Ability and the Provision of Fertility Services,” 

(2009), accessed November 18, 2011. http://www.asrm.org/uploadedFiles/ASRM_Content/News_and_

Publications/Ethics_Committee_Reports_and_Statements/childrearing.pdf.

885 Id.

886 Richard F. Storrow, “The Bioethics of Prospective Parenthood: In Pursuit of the Proper Standard for 

Gatekeeping in Infertility Clinics,” Cardozo Law Review 28 (2007): 2287.

887 Mutcherson, Supra note 815, 316.

888 Id.

889 Id. at 312.

890 The section is adapted from Lindsey Coffey, “A Rights-Based Claim to Surrogacy: Article 23 of the Convention 

on the Rights of Persons with Disabilities,” Michigan State University Journal of International Law 20 (2012): 

259–291.

891 Pseudonym used to protect confidentiality. E-mail message to author, January 23, 2012.

892 “The Cost of Infertility,” Resolve: The National Infertility Association, accessed January 30, 2012, 

http://www.resolve.org/family-building-options/insurance_coverage/the-costs-of-infertility-treatment.html.

893 Id.

894 Id.

895 “Latest U.S. Disability Statistics and Facts,” Disability World towards Tomorrow, last modified July 26, 2011, 

http://www.disabled-world.com/disability/statistics/census-figures.php.

896 Id.

897 “Poverty in the United States: A Snapshot,” National Center for Law and Economic Justice, accessed 

March 13, 2012), http://www.nclej.org/poverty-in-the-us.php. 

898 Erin Lynn Connolly, “Constitutional Issues Raised by States’ Exclusion of Fertility Drugs from Medicaid 

Coverage in Light of Mandated Coverage of Viagra,” Vanderbilt Law Review 54:2 (2001): 451.

899 Id. at 456.

900 Elizabeth Pendo, “Disability, Equipment Barriers, and Women’s Health: Using the ADA to Provide Meaningful 

Access,” St. Louis University Journal of Health Law and Policy 2 (2008): 48.

901 Id.

902 Connolly, Supra note 898, 464.

903 Id. at 465.

904 Id.

905 Pendo, Supra note 900, 47.

906 Michelle Andrews, “Should Infertility Treatment be Considered Essential?” Kaiser Health News, January 24, 

2011, accessed January 30, 2012, http://www.kaiserhealthnews.org/Features/Insuring-Your-Health/michelleandrews-on-infertility-coverage.aspx. 

907 “Insurance Coverage in Your State,” Resolve: The National Infertility Association, accessed February 1, 2012, 

http://www.resolve.org/family-building-options/insurance_coverage/state-coverage.html.

908 Id.

909 Id.

910 Id.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 339
911 See, Id. for example.

912 Andrews, Supra note 906.

913 Id.

914 “Health Insurance 101,” Resolve: The National Infertility Association, accessed January 30, 2012, 

http://www.resolve.org/family-building-options/insurance_coverage/health-insurance-101.html.

915 Shorge Sato, “A Little Bit Disabled: Infertility and the Americans with Disabilities Act,” NYU Journal of 

Legislation and Public Policy 5 (2001-02): 198.

916 Id. See also “Insurance Coverage Facts,” Resolve: The National Infertility Association, accessed December 19, 

2011, http://www.resolve.org/family-building-options/insurance_coverage/insurance-coverage-facts.html.

917 Id.

918 Id.

919 Sato, Supra note 915, 198. Sato also cites another study that found that the average cost would range from 

approximately $.60 to $2.00 per month.

920 “Insurance Coverage Facts,” Supra note 915.

921 Id.

922 Daar, Supra note 826, 23.

923 Id.

924 Adrienne Asch, “Reproductive Technology and Disability,” in Sherrill Cohen and Nadine Taube (Eds.), 

Reproductive Laws for the 1990s: A Briefing Handbook (Clifton, NJ: Humana Press, 1989).

925 Id.

926 This section is adapted from Coffey, Supra note 890.

927 Department of Health and Human Services, Breaking Down Barriers to Health Care for Women with 

Disabilities, (2004), www.hhs.gov/od/summit/whitepaper.doc.

928 Michael A. Stein, “Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination,” 

University of Pennsylvania Law Review 153(2) (2004): 579.

929 42 U.S.C. § 12181; 28 C.F.R. § 36.302.

930 Id.

931 This section is adapted from Coffey, Supra note 931.

932 Convention on the Rights of Persons with Disabilities, Supra note 188.

933 Id.

934 Id. Nonetheless, in all cases the best interests of the child shall be paramount.

935 Id.

936 See, e.g., Coleman, Supra note. 2, 30 (referencing surveys revealing that ART practitioners denied treatment 

to prospective parents who suffered from HIV and severe lupus. Another survey found that 79 percent of 

practitioners would deny ARTs to a patient at risk for transmitting a genetic disorder).

937 Id. at 26–29.

938 Id.

939 Id.

940 Id.

941 Id.

942 Spriggs and Charles, Supra note 880, 325.

943 Id.

944 This section is adapted from Coffey, Supra note 890.

945 James F. Smith et al., “Fertility Treatment and Outcomes Among Couples Seeking Fertility Case: Data from a 

Prospective Fertility Cohort in the United States,” Fertility and Sterility 95 (Jan. 2011): 1.

946 Id.

947 For a discussion on the right to access surrogacy, see Coffey, Supra note 890.

340 National Council on Disability
948 Mutcherson, Supra note 815, 364.

949 Ora Prilleltensky, “My Child Is Not My Carer: Mothers with Physical Disabilities and the Well-Being of 

Children,” Disability and Society 19(3) (2004): 210 (internal citations omitted).

950 Kirshbaum and Olkin, Supra note 34, 66.

951 Id. at 66–67.

952 Id.

953 Shade, Supra note 65, 160–161.

954 Preston, Supra note 35.

955 Id.

956 Id. (internal citations omitted).

957 Warsow, Supra note 450, 207.

958 Diane T. Marsh and Rex M. Dickens, How to Cope with Mental Illness in your Family: A Guide for Siblings, 

Offspring, and Parents, (New York: Tarcher/Putnam, 1998).

959 Marsh, Supra note 266, 30.

960 Gwillim, Supra note 230, 360.

961 Preston, Supra note 35.

962 Lightfoot, Hill, and LaLiberte, Supra note 23, 929.

963 Watkins, Supra note 68, 1450–1451.

964 IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disabilities, “Parents 

Labeled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual 

Disabilities,” Journal of Applied Research in Intellectual Disabilities 21 (2008): 300.

965 J. Faureholm, ‘‘You Have to Fight— About Childhood and Adolescence of Children with Parents Who Have 

Intellectual Disabilities” (PhD dissertation, Danish University of Education, 2006).

966 Tim Booth and Wendy Booth, “Against the Odds: Growing up with Parents Who Have Learning Difficulties,” 

Mental Retardation 38 (2000): 1–14.

967 IASSID, Supra note 964.

968 Collentine, Supra note 261, 542.

969 Lightfoot, Hill, and LaLiberte, Supra note 23, 929.

970 Watkins, Supra note 68, 1454.

971 F.M. Buck and G.W. Hohmann, “Personality, Behavior, Values, and Family Relations of Children of Fathers with 

Spinal Cord Injury,” Archives of Physical Medicine and Rehabilitation 62 (1981):432–438.

972 Preston, Supra note 35.

973 Kirshbaum and Olkin, Supra note 34, 78.

974 Lisa Jo Cohen, “Mothers’ Perceptions of the Influence of Their Physical Disabilities on the Developmental 

Tasks of Children” (PhD dissertation, California School of Professional Psychology, 1998).

975 Rhoda Olkin et al., “Comparison of Parents With and Without Disabilities Raising Teens: Information From the 

NHIS and Two National Surveys,” Rehabilitation Psychology 51(1) (2006):43–49.

976 P. Preston and J. Jacob, national survey of students who have parents with disabilities. Unpublished 

preliminary analyses, 2012.

977 Prilleltensky, Supra note 949, 219.

978 Id.

979 Id. at 220.

980 Id. at 221.

981 Lightfoot and LaLiberte, Supra note 308, 390.

982 Lisa Jones, “I Know That I’m Raising Really Good Girls,” January 5, 2010, http://bloomparentingkidswithdisabilities.blogspot.com/2010/01/does-physical-disability-make-parent.html.

983 Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999).

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 341
984 Stefan, Supra note 136, 140.

985 Pseudonym used to protect confidentiality. E-mail message to author, February 28, 2012.

986 Mitchell P. LaPlante, Charlene Harrington, and Taewoon Kang, “Estimating Paid and Unpaid Hours of Personal 

Assistance Services in Activities of Daily Living Provided to Adults Living at Home,” Health Services Research

37(2) (2002): 412.

987 PAS Center, “About the Center for Personal Assistance Services,” Accessed January 24, 2012. 

http://www.pascenter.org/about/index.php. 

988 Id.

989 Barker and Maralami, Supra note 185, 6-8, 6-9.

990 Id.

991 Id.

992 Id.

993 Id. at 6-1.

994 Centers for Medicare and Medicaid Services, State Medicaid Manual, CMS-45 Section 4480.

995 Barker and Maralami, Supra note 185, 6-2.

996 Id.

997 Id. at 6-2, 6-3.

998 Id.

999 Id.

1000 Id.

1001 Rabia S. Khedr, director of diversity work, Parenting with a Disability: Diversity, Barriers & Requirements. 

(Ontario, Canada: Study Funded by the Canadian Centre on Disability Studies, 2005), 

www.diversityworxparenting_report_revised.pdf. 

1002 Mary Ocampo, Nurturing Assistance. (Toronto, Canada: Disability Network at the Centre for Independent 

Living in Toronto, 2001), www.cwhn.ca/en/node/39590. 

1003 Id. at 19.

1004 Id., at 2.

1005 Swedish Code of Statutes, SFS 1993: 387.

1006 Iren Ahlund, FUB the Swedish Association for People with Learning Difficulties. E-mail correspondence, 

February 14–15, 2012.

1007 Id.

1008 Id.

1009 Jay Matthews, “Custody Battle: The Disabled Fight to Raise Their Children,” Washington Post, August 18, 

1992, z10.

1010 Id.

1011 Pseudonym used to protect confidentiality. Instant message conversation, October 5, 2011.

1012 Pseudonym used to protect confidentiality. Telephone conversation, October 5, 2011.

1013 Pseudonym used to protect confidentiality. Telephone conversation, January 20, 2012.

1014 Pseudonym used to protect confidentiality. Telephone conversation, November 1, 2011.

1015 Pseudonym used to protect confidentiality. In-person conversation, January 20, 2012.

1016 Ora Prilletensky, Supra note 32, 38.

1017 Emily Cooper, Ann O’Hara, and Andrew Zovistoski, The Housing Crisis for People with Disabilities (Boston: 

Technical Assistance Collaborative, 2011), http://www.aucd.org/docs/policy/PricedOut2010.pdf.

1018 Id.

1019 U.S. Department of Housing and Urban Development, The 2008 Annual Homeless Assessment Report

(Washington, DC: U.S. Department of Housing and Urban Development, Office of Community Planning and 

Development, 2009). (This does not include homeless children with disabilities in shelters or the estimated 

282,000 people homeless each night living on the streets, in abandoned buildings, or elsewhere not 

intended for human habitation.)

342 National Council on Disability
1020 Barker and Maralami, Supra note 185, 8-1.

1021 Id.

1022 Id.

1023 Id.

1024 Id.

1025 Id.

1026 Id.

1027 Id.

1028 Id. at 8-3.

1029 Id. at 8-4.

1030 Id. at 8-5.

1031 Id. at 8-4.

1032 Id.

1033 Id.

1034 Id.

1035 “Survey of Americans with Disabilities,” Kessler Foundation and National Organization on Disability (2010), 

http://www.2010disabilitysurveys.org/pdfs/surveyresults.pdf.

1036 National Council on Disability, “The Current State of Transportation for People with Disabilities in the United 

States,” (June 13, 2005), http://www.ncd.gov/publications/2005/06132005.

1037 Barker and Maralami, Supra note 185, 5-1.

1038 Id.

1039 Id.

1040 Id. at 5-1, 5-2.

1041 Id. at 5-2.

1042 Id.

1043 Id.

1044 Id. at 5-3.

1045 Id.

1046 Id.

1047 Through the Looking Glass, Supra note 178.

1048 The Federal Transit Administration provides fee discretion to individual agencies pursuant to 49 C.F.R. § 37.131 (c).

1049 Federal Transit Administration, Letter of Finding Regarding Complaint #99096. Accessed December 16, 2011. 

http://www.fta.dot.gov. 

1050 Federal Transit Administration generally. Accessed December 16, 2011. http://www.fta.dot.gov. 

1051 U.S. Census Bureau, Current Population Survey (Washington, DC: U.S. Census Bureau).

1052 National Council on Disability, “National Disability Policy: A Progress Report,” (October 31, 2011), 

http://www.ncd.gov/progress_reports/Oct312011. 

1053 Id.

1054 Stephen H. Kaye, “Unpublished Tabulations from the 2008 and 2009 American Community Survey.” Prepared 

for the National Center for Parents with Disabilities and their Families at Through the Looking Glass, 2011.

1055 Preston, Supra note 35.

1056 Id.

1057 Kaye, Supra note 1054.

1058 U.S. Department of Agriculture, Food and Nutrition Service, Office of Research and Analysis, Characteristics 

of Supplemental Nutrition Assistance Program Households: Fiscal Year 2010, by Esa Eslami, Kai Filion, and 

Mark Strayer. Project Officer, Jenny Genser. Alexandria, VA: 2011.

1059 Mathematica Policy Research, Inc., “TANF Recipients Living with a Disability: Policy Framework, Prevalence 

and Service Strategies,” (July 16, 2009), http://www.mathematica-mpr.com/publications/pdfs/Family_Support

/tanfrecipeints_Pavetti_0709.pdf. 

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 343
1060 Id.

1061 Joanne Nicholson, Kathleen Biebel, Betsy Hinden, Alexis Henry, and Lawrence Stier. Critical Issues for 

Parents with Mental Illness and Their Families, (Rockville, MD: Substance Abuse and Mental Health Services 

Administration, 2001), 30; Eileen P. Sweeney, “Recent Studies Indicate That Many Parents Who Are Current 

or Former Welfare Recipients Have Disabilities or Other Medical Conditions,” Center on Budget and Policy 

Priorities, February 2000, http://www.cbpp.org/2-29-00wel.htm. 

1062 Id.

1063 Id.

1064 Id.

1065 Id.

1066 Preston, Supra note 35.

1067 Through the Looking Glass, “Visible, Diverse, and United: A Report of the Bay Area Parents with Disabilities 

and Deaf Parents Task Force,” October 30, 2006, http://www.lookingglass.org/announcements

/67-news/100-report-task-force-on-bay-area-parents-with-disabilities-and-deaf-parents.

1068 Pseudonym used to protect confidentiality. Instant message conversation, October 5, 2011.

1069 Norma Love, “NH Joins Idaho in New Welfare Limits for Disabled,” 

Boston.com, February 19, 2012, http://articles.boston.com/2012-02-19/

news/31077756_1_ssi-income-supplemental-security-income-monthly-ssi-check.

1070 Killoran, Supra note 827, 122.

1071 Pendo, Supra note 900, 43.

1072 Id.

1073 Id.

1074 Stein, Supra note, 20, 1079.

1075 Id.

1076 Law Students for Reproductive Justice, Supra note 19. 

1077 Id.

1078 Id.

1079 Id.

1080 Pseudonym used to protect confidentiality. Instant message conversation, October 5, 2011.

1081 Pseudonym used to protect confidentiality. Telephone conversation, November 1, 2011.

1082 Pendo, Supra note 900, 46.

1083 Id.

1084 Margaret A. Nosek et al., National Study of Women with Physical Disabilities: Final Report (Houston, TX: 

Center for Research on Women with Disabilities, 1997).

1085 Law Students for Reproductive Justice, Supra note 19.

1086 Pseudonym used to protect confidentiality. In-person conversation, January 20, 2012.

1087 See generally, National Council on Disability, “The Current State of Health Care for People with Disabilities,” 

(September 30, 2009), http://www.ncd.gov/publications/2009/Sept302009.

1088 Sandra A. Welner, “Gynecologic Care and Sexuality Issues for Women with Disabilities,” Sexuality and 

Disability 15(1) (1997).

1089 H. Becker, A. Stuifbergen, and M. Tinkle, “Reproductive Health Care Experiences of Women with Physical 

Disabilities: A Qualitative Study,” Archives of Physical and Medical Rehabilitation 12 (5) (1997): S26–S30.

1090 J. Panko Reis, M. L. Breslin, L. I. Iezzoni, and K. Kirscher, It Takes More Than Ramps to Solve the Healthcare 

Crisis for People with Disabilities (Chicago: Rehabilitation Institute of Chicago, 2004).

1091 Pendo, Supra note 900, 22–23.

1092 Pseudonym used to protect confidentiality. Telephone conversation, October 12, 2011.

1093 Pseudonym used to protect confidentiality. Telephone conversation, October 11, 2011.

1094 Pseudonym used to protect confidentiality. Telephone conversation, October 12, 2011.

344 National Council on Disability
1095 Id.

1096 Ina Mae Gaskin, “Censorship of the True State of Maternal Health in the US,” in Censored 2012: The Top 25 

Censored Stories of 2010–2011, in Mickey Huff et al. (Eds.) (New York: Seven Stories, 2011), 220.

1097 Judith Rogers, The Disabled Woman’s Guide to Pregnancy and Birth (New York: Demos, 2005). 

1098 Id.

1099 Conversation with Judith Rogers, Berkeley, California, February 8, 2012.

1100 Id.

1101 Erin E. Andrews, “Pregnancy with a Physical Disability: One Psychologist’s Journey,” accessed December 13, 

2011. http://www.apa.org/pi/disability/resources/publications/newsletter/2011/12/pregnancy-disability.aspx. 

1102 “Global Library of Women’s Medicine, Gynecologic and Obstetric Issues Confronting Women with 

Disabilities,” accessed January 27, 2012, http://www.glowm.com/index.html?p=glowm.cml

/section_view&articleid=76. 

1103 Id.

1104 Centers for Disease Control and Prevention, “Preconception Care,” accessed January 27, 2012. 

http://www.cdc.gov/ncbddd/preconception/.

1105 Usha Ranji and Alina Salganicoff, State Medicaid Coverage of Family Planning Services: Summary of State 

Survey Findings, (Washington, DC: Kaiser Family Foundation, November 2009), http://www.kff.org

/womenshealth/upload/8015.pdf.

1106 Id.

1107 Id.

1108 Pseudonym used to protect confidentiality. Telephone conversation, September 27, 2011.

1109 Andrews, Supra note 1103.

1110 Conley-Jung and Olkin, Supra note 290, 27.

1111 Id. at 24.

1112 IASSID, Supra note 964, 298.

1113 Preston, Supra note 35.

1114 Id.

1115 National Multiple Sclerosis Society, “Parenting with MS,” accessed January 27, 2012. 

http://www.nationalmssociety.org/living-with-multiple-sclerosis/relationships/parenting/index.aspx. 

1116 Kathie Corbus and Sherrie Hansen, Training Module: Designing Support Groups for Parents with Intellectual 

Disabilities (Berkeley, CA.: Through the Looking Glass, 2007).

1117 Rogers, Supra note 1098.

1118 Presentation by Hanna Bjorg Sigursjonsdottir, Berkeley, California, October 30, 2011.

1119 Id.; written summary provided at presentation. 

1120 “2010 Kessler Foundation/NOD Survey of Americans with Disabilities,” July 26, 2010, 

http://www.2010disabilitysurveys.org/indexold.html. 

1121 Pseudonym used to protect confidentiality. Telephone conversation, October 3, 2011.

1122 Pseudonym used to protect confidentiality. Telephone conversation, September 27, 2011.

1123 Pseudonym used to protect confidentiality. In-person conversation, January 20, 2012.

1124 Stefan, Supra note 136, 168–169.

1125 Andrea Blanch, Joanne Nicholson, and James Purcell, “Parents with Severe Mental Illness and Their Children: 

The Need for Human Services Integration.” Journal of Behavioral Health Services and Research 21 (1994): 

388–396.

1126 Jung Min Park, Phyllis Solomon, and David S. Mandell, “Involvement in the Child Welfare System Among 

Mothers with Serious Mental Illness,” Psychiatric Services 57 (2006): 493–497. 

1127 Edie Mannion and Barbara Granger, “Helping Behavioral Health Clients with Parenting and Child Custody 

Issues” (2007), 2–3, http://www.upennrrtc.org. 

1128 Id.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 345
1129 Rosemary B. Hughes, Susan Robinson-Whelan, Nancy J. Petersen, and Margaret A. Nosek, “Characteristics 

of Depressed and Non-depressed Women with Physical Disabilities,” Archives of Physical Medicine and 

Rehabilitation 80 (2005): 473–479. 

1130 President’s Committee for People with Intellectual Disabilities, accessed February 8, 2012, http://www.acf

.hhs.gov/programs/pcpd.gov. 

1131 Stephen Kaye, unpublished tabulations from the 2008 and 2009 American Community Survey, prepared for 

the National Center for Parents with Disabilities and Their Families at Through the Looking Glass, 2011.

1132 42 U.S.C. 15001, et seq.

1133 Id. at §201, et seq.

1134 Association of Regional Center Agencies, accessed February 9, 2012, http://www.arcanet.org. 

1135 East Bay Regional Center, accessed February 9, 2012. http://www.rceb.org/about/services.html.

1136 San Diego Regional Center, accessed February 9, 2012. http://www.sdrc.org/c_serv_adult.php.

1137 Conversation with Sherrie Hansen, Berkeley, California. February 10, 2012.

1138 The Arc, “Parents with Intellectual Disabilities,” accessed April 30, 2012, http://www.thearc.org/page.

aspx?pid=3195. 

1139 David McConnell, Gwynnyth Llewellyn, and Rosalind Bye, “Providing Services to Parents with Intellectual 

Disability: Parent Needs and Service Constraints,” Journal of Intellectual and Developmental Disability 22(1) 

(1997): 5–17.

1140 National Council on Independent Living, “Centers for Independent Living,” accessed January 27, 2012, 

http://ncil.org/about/CentersforIndependentLiving.html. 

1141 Id.

1142 E-mail correspondence with Deborah Kent Stein, chair of NFB Blind Parent Committee, February 14, 2012.

1143 Id.

1144 Nicholson et al., Supra note 1061, 35.

1145 Id.

1146 Id.

1147 Id.

1148 Id.

1149 Yash Bhagwanji, Relationships with Parents with Disabilities: Perceptions and Training Needs of Head Start 

Staff (1997), 3, http://www.eric.ed.gov/PDFS/ED433152.pdf. 

1150 Nicholson et al., Supra note 1061, 35.

1151 Bhagwanji, Supra note 1149, 3.

1152 Id. at 2.

1153 Id. at 3.

1154 Id. at 14.

1155 Id. at 5.

1156 Id. at 6.

1157 Id.

1158 Early Childhood Learning and Knowledge Center, accessed February 16, 2012, http://www.eclkc.ohs.acf

.hhs.gov. 

1159 Id.

1160 Id. at 3–4.

1161 Pseudonym used to protect confidentiality. Telephone conversation, September 27, 2011.

1162 Linda Toms Barker, Debra Solomon, and Michael Anderson, “Access to Head Start for Families with Disabled 

Parents” (1998), accessed December 2, 2011, http://www.berkeleypolicyassociates.com/images

/berkeleypolicyassociates.com/Image/photo/20030608_223829/488-2_Headstart_Report.pdf. 

1163 Id.

1164 Nicholson et al., Supra note 1061, 36.

346 National Council on Disability
1165 Gary P. Gross, “The Protection and Advocacy System and Collaboration with Legal Services Programs,” 

Management Information Exchange Journal (Summer 2001), http://www.heart-intl.net/HEART/Legal/Comp

/Theprotection&adsystem.htm. 

1166 Gary P. Gross, “Protection and Advocacy System Standing – To Vindicate the Rights of Persons with 

Disabilities,” Mental and Physical Disability Law Reporter 22(5) (1998).

1167 Id.

1168 Id.

1169 Disability Rights North Carolina, “What is a P&A?” accessed January 27, 2012, http://www.disabilityrightsnc

.org/pages/80/What-is-a-P-and-A. 

1170 Cal. Fam. Code § 3049 (West 2011); id. at §§ 14132, 14059 (West 2011)

1171 National Disability Rights Network, accessed February 12, 2012, http://www.ndrn.org. 

1172 Ella Callow and Jean Jacob, The Perspectives and Demographics of Parents Contacting Through the Looking 

Glass’ Legal Program Regarding Custody Issues, unpublished tabulations from the 2008–2011 study, data on 

file with Through the Looking Glass.

1173 Id.

1174 See New York State Commission on Quality of Care and Advocacy for Persons with Disabilities, “Protection 

and Advocacy for Individual Rights (PAIR),” accessed January 27, 2012, http://cqc.ny.gov/advocacy/protectionadvocacy-programs/pair; Disability Rights Vermont, “Protection and Advocacy for Individual Rights (PAIR),” 

accessed January 27, 2012, http://www.disabilityrightsvt.org/Programs/pair.html; Disability Rights Idaho, 

“Priorities and Objectives,” accessed January 27, 2012, http://www.disabilityrightsidaho.org/services

/priorities-objectives.aspx. 

1175 Bazelon Center for Mental Health Law, Supra note 353.

1176 Kirshbaum and Olkin, Supra note 34, 68–69.

1177 Id.

1178 Id.

1179 Id. at 71.

1180 Callow, Buckland, and Jones, Supra note 98.

1181 Id. at 1.

1182 Id.

1183 Preston, Supra note 35.

1184 Correspondence with Hanna Björg Sigurjónsdóttir, February 3, 2012.

1185 Thresholds, “Family and Youth Services,” Accessed November 18, 2011. http://www.thresholds.org

/find-services/family-and-youth.

1186 Id.

1187 Telephone conversation with Marc Fagan, associate director, Child and Adolescent Services, March 6, 2012.

1188 Id.

1189 Id.

1190 Id.

1191 Thresholds, “Family and Youth Services.”

1192 Id.

1193 Telephone conversation with Marc Fagan.

1194 Id.

1195 National Mental Health Association, “The Invisible Children’s Project: An Example of a 

Promising Program,” accessed November 16, 2011. http://www.nmha.org/download.

cfm?DownloadFile=A04B8B61-1372-4D20-C8935738A28E9262.

1196 Id.

1197 Id.

1198 Id.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 347
1199 Id.

1200 Id.

1201 Id.

1202 Id.

1203 Employment Options, “Family Initiatives,” accessed December 1, 2011. http://www.employmentoptions.org

/family_initiatives.htm.

1204 Employment Options, “Family Project,” accessed January 23, 2012. http://www.employmentoptions.org

/family_project.htm. 

1205 Id.

1206 Id.

1207 Marsh, Supra note 266, 32.

1208 Id.

1209 Betsy Hinden and Chip Wilder, “Family Options: Supporting Parents with Mental Illness and their Children,” 

Focal Point. (2008): 7–9.

1210 Id.

1211 Employment Options, “Family Initiatives.”

1212 Employment Options, “Clubhouse Family Legal Support Project,” accessed January 23, 2012. 

http://www.employmentoptions.org/family_legal.htm. 

1213 Mari Lubin, “The Clubhouse Family Legal Support Project,” (2007) accessed December 1, 2011. 

http://www.employmentoptions.org/documents/MariLubinResearchProjectPaper5-07_000.pdf.

1214 Id.

1215 Id.

1216 Id.

1217 Id.

1218 Id.

1219 The Arc United, “Positive Parenting Resource Center,” accessed January 23, 2012. http://www.unitedarc.org

/positiveparenting.html. 

1220 Id.

1221 Id.

1222 http://www.progressfoundation.org.html, accessed February 11, 2012.

1223 Id.

1224 http://www.acf.hhs.gov/programs/add/pns/fs360factsheet.html, accessed February 11, 2012.

1225 Id.

1226 Strategies for Sustainability: Continuing the Family Support 360 Projects, PowerPoint presentation, 

http://addfamilysupport360.org/3_10/DDRDocuments/SustainabilityPresentationAUCD.ppt, accessed 

February 11, 2012.

1227 Id.

1228 Report to the Vermont Legislature, “Serving People with Disabilities,” in accordance with H.615; An Act 

Relating to Juvenile Judicial Proceedings.

1229 E-mail correspondence with Nicole Brisson and Susan Yuan, directors of Sage Haven Center, February 13, 

2012.

1230 Nicole Brisson, e-mail message to author, March 4, 2012.

1231 Id.

1232 Disability Rights Vermont, Vermont Communication Support Project (2011), brochure on file with author.

1233 Disability Rights Vermont, Overview of the Vermont Communication Support Project (2011), report on file 

with author.

1234 Id.

1235 Id.

348 National Council on Disability
1236 David McConnell et al, “Healthy Start: A National Strategy for Parents with Intellectual Disabilities and their 

Children,” Journal of Policy and Practice in Intellectual Disabilities 5(3) (2008): 194–202, 201.

1237 Id. at 196.

1238 Id. at 196–199.

1239 Id.

1240 Id. at 200.

1241 Id.

1242 Callow, Buckland, and Jones, Supra note 98. 

1243 Id. at 12–13.

1244 California Welfare and Institutions Code §14132.

1245 Callow, Buckland, and Jones, Supra note 98.

1246 Id.

1247 Id.

1248 §32-717 (5); §32-1005 (3); §16-2001; §16-1601

1249 §32-717 (4)(a-c); §32-717 (2); §16-2002 (r-t); §16-1602 

1250 §32-1005 (2)(a-c); §16-2005 (i); §16-1609(A)

1251 §32-717 (2); §16-2008(b); 

1252 Id.

1253 Id.

1254 Id.

1255 Id.

1256 Doe v. Doe, 138 Idaho 893 (2003).

1257 Lieurance-Ross v. Ross, 142 Idaho 536, 542 (2006).

1258 Id.

1259 Callow, Buckland, and Jones, Supra note 98.

1260 Id.

1261 Id.

1262 §28-2201 (c).

1263 §28-2201 (c)(1).

1264 §28-2201 (c)(1).

1265 §28-2201 (c)(2).

1266 Callow, Buckland, and Jones, Supra note 98, 15–16.

1267 Id. at 18.

1268 California Welfare and Institutions Code §14132.

1269 Callow, Buckland, and Jones, Supra note 98.

1270 Amy De La Hunt, “A Victory for Parents with Disabilities in Missouri,” St. Louis Kids Magazine, July 15, 2011, 

http://www.stlouiskidsmagazine.com/story/victory-parents-disabilities-missouri. 

1271 Jordan Shapiro, “Bill to Protect Custody Rights of Parents with Disabilities,” Columbia 

Missourian, March 2, 2011, http://www.columbiamissourian.com/stories/2011/03/02/

lawmakers-work-prevent-child-custody-loss-disabled-parents.

1272 Bill information available at http://mlis.state.md.us/2009rs/billfile/hb0689.htm and http://mlis.state

.md.us/2009rs/billfile/sb0613.htm, accessed March 5, 2012.

1273 Lightfoot and LaLiberte, Supra note 308, 389–390.

1274 33 V.S.A. § 5922(b).

1275 Lightfoot, Hill, and LaLiberte, Supra note 23, 933; See also http://www.rilin.state.ri.us/BillText00

/HouseText00/H7750baa.htm.

1276 Child Welfare Information Gateway, Supra note 80.

1277 Id.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 349
1278 Fred Wulczyn, Supra note 375, 97.

1279 Callow, Buckland, and Jones, Supra note 98.

1280 Id.

1281 See Hearings before the Subcommittee on Indian Affairs of the Senate Committee on the Interior and Insular 

Affairs, 93d Cong. § 3, at 15 (1974) (stating that studies undertaken by the Association on American Indian 

Affairs in 1969 and 1974, and presented in the Senate hearings showed that 25 percent to 35 percent of 

all Indian children had been separated from their families and placed in adoptive families, foster care, or 

institutions).

1282 Id.

1283 Paul David Kouri, “In re M.J.J., J.P.L., & J.P.G: The ‘Qualified Expert Witness’ Requirements of the Indian Child 

Welfare Act,” American Indian Law Review 29 (2004): 403.

1284 25 U.S.C. §1901.

1285 Callow, Buckland, and Jones, Supra note 98.

1286 25 U.S.C. §1901.

1287 Id.

1288 Id. at §1912 (a).

1289 Id. at §1912 (b).

1290 Id. at §1912 (d).

1291 National Indian Child Welfare Association, “Indian Child Welfare Act (ICWA) Compliance,” accessed March 5, 

2012, http://www.nicwa.org/resources/icwafaq/compliance.asp. 

1292 25 U.S.C. § 1912 (f).

1293 Id. See Kouri, Supra note 1283 for a discussion of the varying definitions of “qualified witness” for purposes 

of the ICWA.

1294 Santosky v. Kramer, 455 U.S. 745, 753 (1982); Stanley v. Illinois, 405 U.S. 645, 651 (1972).

1295 Elizabeth Lightfoot and Traci LaLiberte, “The Inclusion of Disability as Grounds for Termination of Parental 

Rights in State Codes,” Research and Training Center on Community Living 17 (2006): 1–11. 2 (2006).

1296 As discussed in chapter 7 on the family law system, the best interest of the child standard governs most 

family and guardianship considerations. The standard allows for consideration of parental disability, and few 

states have promulgated legislation establishing the need for a nexus between parental disability and harm 

to the child or specifying the allocation of evidentiary burden.

1297 Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833, 844 (1992).

1298 U.S. Const. amend. XIV, §§ 2, 4.

1299 Rehabilitation Act of 1973, as amended, 29 U.S.C.A. §794.

1300 Americans with Disabilities Act, 42 U.S.C.A. §12101 et seq.

1301 Regulations for the Rehabilitation Act of 1973, as amended, 45 C.F.R. §84.4 et seq. (West 2012); Regulations 

for the Americans with Disabilities Act, 28 C.F.R. §35 et seq. (West 2012).

1302 Nina Waslow, “Planned Failure: California’s Denial of Reunification Services to Parents with Mental 

Disabilities,” New York University Review of Law and Social Change 31(2006): 198.

1303 P.O.P.S. v. Gardner, 998 F.2d 764, 768 (9th Cir. 1993).

1304 Robert Lavesque, Child Maltreatment and the Law: Returning to First Principles (Tokyo: Springer, 2010), 

87–89.

1305 Cal.Welfare & Inst. Code Ann. § 361.5 (West 2012); NY SOC. SERV. § 384-b (West 2012).

1306 Dennis v. DeJong, 2011 WL4732810at *21 (E.D.Pa.); Ziccardi v. City of Philadelphia, 288 F.3d 57, 66 (3d Cir. 

2002); Miller v. City of Philadelphia, 174 F.3d 368, 375 (3d Cir. 1999). 

1307 In re N.R., 967 P.2d 951, 956 (Utah Ct. App. 1998); In re Christina A., 261 Cal. Rptr. 903, 906–907 (Cal. Ct. 

App. 1989).

1308 Cal.Welfare & Inst. Code Ann. § 361.5 (West 2012); NY SOC. SERV. § 384-b (2012).

1309 Voting Rights Act of 1965, 42 U.S.C.A. § 1971.

350 National Council on Disability
1310 City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985).

1311 Id. at 3258.

1312 Gayle Lynn Pettinga, “Rational Basis with Bite: Intermediate Scrutiny by Any Other Name,” Indiana Law 

Journal 62 (1987): 779–803. 

1313 See Cleburne v. Cleburne Living Center, 473 U.S. at 439.

1314 Katherine A. Judge, “Serving Children, Siblings and Spouses: Understanding the Needs of Other Family 

Members,” in Harriet P. Lefley and Mona Wasow (Eds.), Helping Families Cope with Mental Illness (pp. 161–

183) (Chur, Switzerland: Taylor & Francis, 1994). See also Carol G. Taylor et al., “Diagnosed Intellectual and 

Emotional Impairment among Parents who Seriously Mistreat their Children: Prevalence, Type and Outcome 

in a Court Sample,” Child Abuse and Neglect 15 (1991): 395 (documenting similar discrimination resulting in 

stricter standards and harsher outcomes for parents with intellectual disabilities).

1315 Americans with Disabilities Act 42 U.S.C.A. §12131 et seq.; Rehabilitation Act of 1973, as amended, 

29 U.S.C.A. §794; Regulations for the Rehabilitation Act of 1973, as amended, 45 C.F.R. §84.4 et seq.; 

Regulations for the Americans with Disabilities Act, 28 C.F.R. §35.130 et seq.

1316 Egelhoff v. Egelhoff ex rel. Breiner, 532 U.S. 141, 151–152 (2001); Hisquierdo v. Hisquierdo, 439 U.S. 572, 

581, 99 S.Ct. 802, 59 L.Ed.2d 1 (1979); Boggs v. Boggs, 520 U.S. 833, 117 S.Ct. 1754, 138 L.Ed.2d 45 (1997)

(holding that ERISA preempts a state community property law permitting the testamentary transfer of an 

interest in a spouse’s pension plan benefits).

1317 Popovich v. Cuyahoga County Court of Common Pleas, 150 Fed. Appx. 424, 425–426 (Ohio) 2005

1318 See Stone v. Daviess, 656 N.E.2d 824, 830 (Ind. Ct. App. 1995); In re Anthony P., 84 Cal.App.4th 1112 (2000); 

People ex rel. T.B., 12 P.3d 1221 (Colo. Ct. App.2000); In re Anthony B., 54 Conn. App. Ct. 463 (1999); State in 

Interest of B.K.F., 704 So. 2d 314 (La. Ct. App. 1997); Adoption of Gregory, 434 Mass. 117 (2001); In re Terry, 

240 Mich. App. 14, 610 N.W.2d 563 (2000); In re Custody of La’Asia S., 191 Misc.2d 28 (N.Y. Fam. Ct. 2002); 

In re B.S., 693 A.2d 716 (Vt. 1997).

1319 See generally Chapter 5: “The Child Welfare System: Removal, Reunification, and Termination.”

1320 U.S. Const. amend. XIV, §5.

1321 Tennessee v. Lane, 124 S. Ct. 1978 (2004)

1322 Kevin Schwartz “Applying Section 5: Tennessee v. Lane and Judicial Conditions on the Congressional 

Enforcement Power” Yale Law Journal114 (2005):1139.

1323 Id.

1324 Id.

1325 Robert C. Post and Reva B. Siegel, “Legislative Constitutionalism and Section Five Power: Policentric 

Interpretation of the Family and Medical Leave Act,” Yale Law Journal 112 (2003):1949.

1326 City of Boerne v. Flores, 521 U.S. 507, 520 (1997).

1327 Schwartz, Supra note 1322,1159–1161.

1328 Tennessee v. Lane, 124 S. Ct. at 1994.

1329 Id. at 1993.

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children 351
352 National Council on Disability
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004