National Council on Disability

September 27, 2012

Rocking the Cradle: 

Ensuring the Rights of 

Parents with Disabilities 

and Their Children
National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

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

Children

This report is also available in alternative formats and on the National Council on 

Disability (NCD) Web site (www.ncd.gov).

September 27, 2012

202-272-2004 Voice

202-272-2074 TTY

202-272-2022 Fax

The views contained in this report do not necessarily represent those of the 

Administration, as this and all NCD documents are not subject to the A-19 Executive 

Branch review process.


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

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov

1 

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.

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 wellbeing 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.
2

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 

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
3 

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
4

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.
5

Table of Contents

Acknowledgments......................................................................................................... 4

Table of Contents.......................................................................................................... 5

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

Executive Summary .................................................................................................... 13

Summary of Methodology.................................................................... 15

Findings and Recommendations ......................................................... 16

CHAPTER 1. Introduction........................................................................................ 43

The Evolution of Parenting in the Disability Community ...................... 43

Parenting with a Disability in the 20th Century.............................. 43

Parenting with a Disability Today: The Eugenics Movement’s 

Backdoor?......................................................................... 44

Current Data on Parents with Disabilities and Their Families .............. 48

Fundamental Principles of Parenting Rights in the United States........ 51

Dependency Law......................................................................... 53

Family Law................................................................................... 57

Adoption Law............................................................................... 58

Purpose and Structure of Report ......................................................... 60

CHAPTER 2. Research Methodology ..................................................................... 63

CHAPTER 3. Disability Law Framework................................................................. 65

Federal Disability Rights Laws: An Overview....................................... 65

Rehabilitation Act of 1973.................................................................... 66

Americans with Disabilities Act ............................................................ 67

Title II of the Americans with Disabilities Act................................ 68

Title III of the Americans with Disabilities Act............................... 70

Ensuring Accessibility for the Whole Family ........................................ 73

Conclusion........................................................................................... 76

CHAPTER 4. Pursuing Parenting Rights Through the Convention on the 

Rights of Persons with Disabilities .................................................. 77

Respect for Home and the Family ....................................................... 78

Access to Reproductive Health............................................................ 79

Additional Protections for Parents with Disabilities and Their 

Children ....................................................................................... 80

Conclusion........................................................................................... 82
6 

CHAPTER 5. The Child Welfare System: Removal, Reunification, and 

Termination ........................................................................................ 83

The Child Welfare System: A Brief Overview....................................... 84

Disability Law and the Child Welfare System....................................... 87

Disparate Impact of Child Welfare System on Parents with 

Disabilities and Their Families ..................................................... 90

Discriminatory State Statutes............................................................... 99

Recurrent Barriers in Child Welfare Cases Involving Parents with 

Disabilities.................................................................................. 101

Adoption and Safe Families Act of 1997 and Its Impact on 

Parents with Disabilities .................................................. 101

Perceived Limits on Application of the Americans with 

Disabilities Act at Termination Phase.............................. 111

Bias, Speculation, and the “Unfit Parent” Standard ................... 113

Issues in Meaningful Participation and Representation ............. 118

The Impact on Children ..................................................................... 122

Conclusion......................................................................................... 128

CHAPTER 6. Parental Disability and Child Welfare in the Native American 

Community....................................................................................... 131

The Tribal Context: A Brief Overview................................................. 131

The History of Native Americans and Child Welfare.......................... 132

The Statistics ..................................................................................... 132

Summary of the Indian Child Welfare Act .......................................... 133

The Intersection of the ADA and ICWA ............................................. 133

Lack of Services ................................................................................ 134

Need for Culturally Relevant Services and Training .......................... 135

Need for Data Collection.................................................................... 136

Conclusion......................................................................................... 136

CHAPTER 7. The Family Law System: Custody and Visitation ......................... 137

The Family Law System: A Brief Overview........................................ 138

Disability Law and the Family Law System........................................ 138

The System Parents with Disabilities and Their Families Are Likely 

to Experience............................................................................. 140

Bias, Speculation, and the “Best Interest of the Child” Standard ....... 146

The Patchwork Quilt of State Laws.................................................... 150

Issues in Meaningful Participation and the Total Lack of 

Guaranteed Representation....................................................... 152

The Impact on Children ..................................................................... 155

Conclusion......................................................................................... 156
7

CHAPTER 8. Inappropriate and Unadapted Parenting Assessments in Child 

Welfare and Family Court................................................................ 157

The Role of Assessments in Determining Outcomes......................... 157

Bias in Assessment ........................................................................... 158

Testing of People with Disabilities in General.................................... 160

Assessment of Parents with Disabilities in Both Systems.................. 161

Conclusion......................................................................................... 168

CHAPTER 9. Lack of Adapted Services, Adapted Equipment, and Parenting 

Techniques in Child Welfare and Family Court............................. 169

Communication Adaptation Issues .................................................... 169

Adaptations and Assessments........................................................... 171

Lack of Adaptation Expertise Linked to Exaggeration of Needs ........ 172

Avoiding Bias Regarding Adaptive Supports ..................................... 173

Assessment Setting Issues................................................................ 174

Piloting Adaptations During Assessments ......................................... 174

Impact of Separation on the Natural Mutual Adaptation Process....... 175

Adaptations During Reunification Services........................................ 176

Adaptations to Inform Visitation ......................................................... 177

The Role of Interdisciplinary Expertise .............................................. 178

Implications for Adoption and Assisted Reproductive Technologies.. 179

Conclusion......................................................................................... 179

CHAPTER 10. The Adoption Law System.............................................................. 181

The Adoption Law System: A Brief Overview .................................... 182

Domestic Adoption..................................................................... 183

International Adoption................................................................ 185

Disability Law and the Adoption System............................................ 186

Access to the Domestic Adoption System ......................................... 188

Discrimination and Bias ............................................................. 188

Permissible Discrimination or Valid Defenses to the ADA? ....... 194

Patchwork Quilt of State Laws ................................................... 195

Ensuring Access to Domestic Adoption ..................................... 197

International Adoption: A Promising Alternative?............................... 199

Invidious Criteria ........................................................................ 200

Agency Discrimination and Home Studies................................. 202

Other Barriers to International Adoption .................................... 203

Improving Access to International Adoption............................... 204

Conclusion......................................................................................... 204

CHAPTER 11. Assisted Reproductive Technologies............................................ 205

Assisted Reproductive Technologies: A Brief Overview .................... 205

Disability and Reproduction: Historical Context ................................. 207
8

Disability Law and Assisted Reproductive Technologies ................... 208

Access to Assisted Reproductive Technologies ................................ 209

Discrimination and Bias ............................................................. 210

Financial Barriers....................................................................... 219

Ensuring Access to Assisted Reproductive Technologies ......... 222

Assisted Reproductive Technologies as an Accommodation ............ 223

ADA Duty to Provide Reasonable Accommodations ................. 223

United Nations Convention on the Rights of Persons with 

Disabilities....................................................................... 224

Examples of Assisted Reproductive Technologies as 

Accommodations ............................................................ 226

Conclusion......................................................................................... 227

CHAPTER 12. The Impact of Disability on Parenting............................................ 229

Parents with Psychiatric Disabilities................................................... 230

Parents with Intellectual or Developmental Disabilities...................... 232

Parents with Physical or Sensory Disabilities .................................... 233

Conclusion......................................................................................... 237

CHAPTER 13. Supporting Parents with Disabilities and Their Families in the 

Community....................................................................................... 239

Personal Assistance Services............................................................ 240

Housing ............................................................................................. 244

Transportation.................................................................................... 247

Public Benefits and Poverty............................................................... 249

Health Care........................................................................................ 252

Peer Supports.................................................................................... 257

Disability and Mental Health Service Providers ................................. 261

Mental Health Service Providers................................................ 261

Intellectual Disabilities Service Providers .................................. 263

Service Providers for People with Physical Disabilities, 

Blindness, or Deafness ................................................... 264

Early Intervention and Prevention...................................................... 265

Protection and Advocacy System ...................................................... 268

Conclusion......................................................................................... 269

CHAPTER 14. Promising Practices to Prevent Unnecessary Removal and 

Loss of Children .............................................................................. 271

Through the Looking Glass, Berkeley, California............................... 271

Thresholds Mothers’ Project, Chicago, Illinois ................................... 275

Invisible Children’s Project, Orange County, New York ..................... 276

Family Initiatives at Employment Options, Marlborough, 

Massachusetts........................................................................... 278
9

Positive Parenting Resource Center at United Arc of Franklin and 

Hampshire Counties, Greenfield, Massachusetts ...................... 280

Ashbury House, San Francisco, California ........................................ 281

Promising Models for Funding and Structure..................................... 282

Family Support 360 Projects...................................................... 282

Healthy Start, Australia .............................................................. 286

Conclusion......................................................................................... 287

CHAPTER 15. Remedial State and Federal Legislation of Interest...................... 289

State Legislation of Interest ............................................................... 289

Idaho 289

Kansas....................................................................................... 291

California.................................................................................... 293

Efforts by Other States .............................................................. 294

Federal Legislation of Interest: Indian Child Welfare Act ................... 295

Conclusion......................................................................................... 298

CHAPTER 16. Need for Legislation to Ensure the Rights of Parents with 

Disabilities and Their Families ....................................................... 299

History of Efforts to Challenge or Defeat Laws Harmful to Parents 

with Disabilities .......................................................................... 299

Due Process .............................................................................. 300

Equal Protection ........................................................................ 301

Rehabilitation Act and Americans with Disabilities Act .............. 301

State Legislation ................................................................................ 302

Federal Legislation ............................................................................ 302

Conclusion......................................................................................... 304

CHAPTER 17. Findings and Recommendations ................................................... 305

APPENDIX A. Interviews ......................................................................................... 333

APPENDIX B. State-By-State Analysis of Dependency Statutes and Their 

Inclusion of Disability...................................................................... 335

APPENDIX C. Model Legislation (State or Federal) .............................................. 369

APPENDIX D. Proposed ADA Amendment............................................................ 375

Endnotes.................................................................................................................... 383
10
11

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

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
12

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 

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
13

Executive Summary

The 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 wellbeing 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 
14

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 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 
15

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, status-based 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. 

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 
16

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), 
17

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) 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 
18

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.

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 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.
19

• 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. 

• 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 
20

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 
21

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.

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.
22

• 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.

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 
23

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 disabilityrelated 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. 

• 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.
24

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 Hague Convention. Such work will 
25

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 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.
26

• 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 (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.
27

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 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.

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.

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. 
28

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 firsttime 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.
29

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.

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 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.

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 
30

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. 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 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 
31

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 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.
32

• 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.

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.
33

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.

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.
34

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 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.
35

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.

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 court-appointed 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 
36

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.

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.

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.
37

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 
38

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.

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).

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 
39

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 end-run 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 

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 crossdisability, 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 
40

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. 

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 
41

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.

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 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

• 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 
42

reinforce American leadership in disability rights and support American efforts to 

promote the rights of parents with disabilities around the world.
43

CHAPTER 1. Introduction

“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
44

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 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-yearold 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 disability appointed as temporary 
45

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 
46

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 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 
47

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 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
48

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 
49

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

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 
50

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 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, nondisabled 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 
51

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, “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.
52

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 
53

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 

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 
54

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 

parent-child 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 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.
55

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 
56

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 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 
57

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 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 
58

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.
59

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 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 
60

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 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.
61

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.
62
63

CHAPTER 2. Research Methodology

In 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 
64

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 

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.
65

CHAPTER 3. Disability Law Framework

This 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
66

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 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
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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 
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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 
69

● 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 

● 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 
70

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 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 
71

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 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
72

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
73

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 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:
74

● 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 
75

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 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 wheelchair-accessible, 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, 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.” 
76

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.
77

CHAPTER 4. Pursuing Parenting Rights Through the 

Convention on the Rights of Persons 

with Disabilities

“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, 
78

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 

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. 
79

● 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

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 
80

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 
81

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 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 
82

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.
83

CHAPTER 5. The Child Welfare System: Removal, 

Reunification, and Termination

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.

Tiffany’s tragic story highlights an all-too-familiar situation for many parents with 

disabilities. More than two decades since Tiffany lost her children, parents with 
84

disabilities still do not fit the norms and expectations of the American nuclear family, and

often run 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 wellbeing 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
85

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, community-based 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 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 
86

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, 
87

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 

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 
88

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

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 To implement this mandate, the

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
89

● 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

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 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 
90

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. 
91

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 

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 
92

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, 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 overinvolvement 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 
93

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 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. Thirty-one 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 
94

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 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 
95

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 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 
96

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. 

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 
97

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 Conley-Jung 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. 
98

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 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
99

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 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
100

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 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 
101

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 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 
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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 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
103

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 non-disabled 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 
104

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 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 
105

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 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 
106

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 with its duty to rehabilitate those parents 
107

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, one-size-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, 
108

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 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 

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 
109

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 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.

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 
110

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 
111

indicator is this one: “Parent has significant, protracted, and untreated mental health 

issues and parent’s 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 
112

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 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 
113

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, perhaps because no strong bond has formed between parent 

and child, or perhaps because of pressure from the social service system.”

406 Also, the 
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oppression most people with disabilities experience in their lifetimes can affect their 

ability to self-advocate.

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 breast-feeding—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.

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 
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visits, Brandy became upset during a 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 postevaluation 

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 
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(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.

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 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 
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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 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 
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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 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; 
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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 

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, 
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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 

cross-examining 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 outcome-determinative.”

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 court-appointed 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, to know what the parent really wants his or her 
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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 bed-shaking 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 
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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 

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 
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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 self-reliance.”

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 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 
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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
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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 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 

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 
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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 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 “high-needs, 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.” 
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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 self-esteem 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, 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 
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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 
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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, 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.
130
131

CHAPTER 6. Parental Disability and Child Welfare in 

the Native American Community

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-to-nation 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 
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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 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 
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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 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 
134

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 
135

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 non-Native 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. 

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
136

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. Longstanding 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. 
137

CHAPTER 7. The Family Law System: Custody and 

Visitation

In 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 year-and-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 

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 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 
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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 
139

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 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
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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 most evaluators:

● 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 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.
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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 
142

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 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 
143

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 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 
144

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

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

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 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.
145

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 
146

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 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 
147

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 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 
148

care to their parents with physical disabilities, which is in stark contrast to what 

researchers have consistently found.554 

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 stay-at-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. 

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.

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 
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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, 

decision-makers might gloss over the grave issues that arise in termination proceedings 

when they arise in divorce.”

558

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. 

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 
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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.

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 
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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

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 
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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.

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 
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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, nondisability-specific legal service agencies [; these...] agencies are restricted in the types 

of cases for which they can provide representation.”

571 Additionally, “Even where lowcost 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 face and how to overcome them. 

Counsel must not only have expertise in family law but must understand disability or be
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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.
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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, 

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 able-bodied 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 
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“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; 

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.
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CHAPTER 8. Inappropriate and Unadapted Parenting 

Assessments in Child Welfare and 

Family Court

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 
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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 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, parentchild 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 
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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

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 
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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 
161

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 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
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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 norm-referenced 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 

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 “parental-child relationship dictates 

parental fitness and not IQ levels.”

612 Nonetheless, children are often removed primarily 

on the basis of their parent’s IQ.613 
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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, 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 
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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 decision-making....”626
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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:

“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 
166

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 computergenerated 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 parentchild interaction. It is encouraging that custody evaluations have become more 

relational in recent years. There is 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 
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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 parent-child 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 self-preservation 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 
168

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 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 disability-related 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.
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CHAPTER 9. Lack of Adapted Services, Adapted 

Equipment, and Parenting Techniques 

in Child Welfare and Family Court

The 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 time-limited 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.

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. 
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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-to-face 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 
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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 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 
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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 infant-parent 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, wheelchair-accessible 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 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-
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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-fourhour 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. 
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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 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. 
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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 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 
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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 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 
177

“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

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 
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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 disability-appropriate interventions and parenting 

adaptations on the parent child relationship.674 Experts on disability and parenting have 

suggested a reexamination of the assumption 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 
179

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 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 
180

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.
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CHAPTER 10. The Adoption Law System

In 1995, when Rachel679 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 
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and international adoption practices reveals that reforms are urgently needed across the 

broad spectrum of adoption practices and procedures.

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 
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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. 

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 
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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 

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 
185

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 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
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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.)

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 
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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 
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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 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 state-administered 
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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 

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 
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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 

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.

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, 
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“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 
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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, 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 
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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 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 
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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 
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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 

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 four-year-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 
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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 

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 
197

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-by-state 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 
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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 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 
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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 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 
200

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 
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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 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, 
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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.

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.
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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.

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. 

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 costprohibitive for some, thus precluding them from international adoption. 
204

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

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.
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CHAPTER 11. Assisted Reproductive Technologies

In 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

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.

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 
206

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 
207

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 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 
208

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 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, 
209

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.
210

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. 

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 “Sixty-one 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 
211

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 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
212

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 HIVpositive 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-
213

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 

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 thirtyfive, 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 
214

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 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 
215

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 self-evidently 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 experience of the disabled 
216

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 
217

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 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 well-substantiated 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 
218

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 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 
219

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

Stacey891 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.

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 
220

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 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 
221

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, 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 
222

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 Employer-Sponsored 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 
223

reasonable 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 
224

accommodations in the context of reproductive rights. In his article “Same Struggle, 

Different Difference: ADA Accommodations as Antidiscrimination,” Michael Stein, an 

internationally recognized disabilities rights expert, explains that ADA-mandated 

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 disability-related 

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. Barrier-free 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 
225

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 

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 
226

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 HIV-positive 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 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 
227

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.
228
229

CHAPTER 12. The Impact of Disability on Parenting

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 child-rearing 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, 
230

substance use, and a lack of adequate supports—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 
231

itself a significant risk factor for children, many of the additional findings are 

compromised by over-generalizing 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 overpredict 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 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 
232

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 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 
233

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 misconceptions about their parenting 
234

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 problemsolving 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 
235

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 school-age children of 

parents with visual or physical disabilities are their parents’ caretakers revealed the 

opposite to be true; mothers reported using 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.
236

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 childrearing practices they use and their overall relationship with their children, the emphasis 

was on consistent parenting practices. A number of mothers mentioned reliance on 
237

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 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 wellbeing.”

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.
238
239

CHAPTER 13. Supporting Parents with Disabilities 

and Their Families in the Community

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.
240

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 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, 
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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 

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
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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 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 
243

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, 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 
244

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 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 
245

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 
246

without many of the housing features that they feel are necessary or would make their 

lives easier.”

1031

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 familyoriented 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 
247

units accessible for parents with disabilities and their families. HUD should also develop 

a program for parents with disabilities who are first-time 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 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 
248

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 seats, 
249

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 Parents with disabilities and their families are not protected from this
250

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
251

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 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. 
252

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 long-standing 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, 
253

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 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 
254

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 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
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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,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,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.

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, 
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“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 pregnancyrelated 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 fact, a 
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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 pre-pregnancy 

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 
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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 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 
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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 three-year 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 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 
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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-
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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 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 Medicaid-eligible mothers with and without claims for psychiatric 

services to examine their involvement with the child protective service system in 
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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 

recovery-oriented services and the availability of evidence-based 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-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 

infant-parent relationships and interaction is a particular focus of these specialists; it is 

critical to address this promptly to prevent long-term negative effects on children. 
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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 the state system to rely on 

unsophisticated independent living skills workers to provide “training.”

1137
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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 
265

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 selfcare 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 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 
266

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 family-centered 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, 
267

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 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 
268

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. 

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 self-advocacy 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 
269

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
270

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. 
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CHAPTER 14. Promising Practices to Prevent 

Unnecessary Removal and Loss of 

Children

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 
272

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 

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, 
273

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 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 
274

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 

relationship-based 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 observation-based and home-based assessment of parentchild interaction and relationships, and piloting adaptations. 

● Developmental assessment and early intervention – Home-based, 

relationship-based 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. 
275

● 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. 

● 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
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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 
277

“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 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, award-winning, 

interagency program that the National Mental Health Association is helping to replicate 

nationwide.1202
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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. 

● 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.
279

● 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 full-time 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 
280

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, 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 
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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 
282

to maintain or regain custody. Onsite day treatment includes parenting 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 
283

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 unserved 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 family-directed 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 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 
284

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 
285

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 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.
286

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 capacity-building 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 organizational-level 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 area networks developed and led by local champions, 

implementing a national technology-based 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, cross-disciplinary, 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
287

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. 
288
289

CHAPTER 15. Remedial State and Federal Legislation 

of Interest

“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 
290

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 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
291

● 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 LieuranceRoss 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 stroke-impaired 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 
292

stories of losing their parental rights, 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
293

● 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 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 cost-prohibitive 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 
294

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 
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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 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 
296

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 States, exercising their recognized jurisdiction 
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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 
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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.
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CHAPTER 16. Need for Legislation to Ensure the 

Rights of Parents with Disabilities and 

Their Families

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 jurisprudence, no successful antidiscrimination strategy has emerged. 
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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 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 
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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 
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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 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 state-by-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 
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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 
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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 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. 
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CHAPTER 17. Findings and Recommendations

The 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.

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), 
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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) 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 
307

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.

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. 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.
308

• 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. 

• 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 
309

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 
310

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.

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 
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(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.

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
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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 disabilityrelated 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. 
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• 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.

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.
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• 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.
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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.

• 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.
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• 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.

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 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 cost-effective.

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.
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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 firsttime homeowners.

NCD recommends that HUD develop a program for parents with disabilities who

are first-time homeowners. This program should include counseling and lowinterest 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 
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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.

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.

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.

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.
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• 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 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.
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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. 

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.
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• 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.

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.
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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.
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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 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.
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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. 

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.

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 court-appointed 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 
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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

• 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.

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.
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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 
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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. 

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

• 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 
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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 
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support the development and implementation of tribal legal services training and 

technical assistance to the court 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 wellpositioned to assist both reservation and urban Indian communities. 

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 
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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.

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 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.
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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.
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APPENDIX A. Interviews

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 Co-president 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
334

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
335

APPENDIX B. State-By-State Analysis of Dependency Statutes and Their 

Inclusion of 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:

(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.

(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.)
336

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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.

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.
337

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 

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.
338

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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.
339

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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:

(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)
340

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 eventual adoption, 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 

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.
341

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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)

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 
342

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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:

(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.
343

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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.

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 
344

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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.

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 
345

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

that which should 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.
346

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 renders the 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.
347

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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.
348

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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.

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.
349

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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)
350

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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: 

(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. 
351

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;
352

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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.
353

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

Montana Yes X X X MCA 41-3-609 (1) (2005)

The court may order a termination of the parentchild 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:

(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 parent-child 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;
354

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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.
355

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.
356

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 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;
357

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

(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;

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;
358

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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;

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 
359

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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.

(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.
360

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;

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...
361

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

Ohio Yes X X X X Chemical 

dependency

OH R.C. § 2151.414

A.(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. 

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. 
362

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

Oregon No

Pennsylvania No

Rhode Island No

South Carolina Yes X X X Alcohol or

drug 

addiction

Code 1976 § 63-7-2570

The 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 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
363

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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: 

(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;
364

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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; 

(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 No
365

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

Virginia 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;

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....
366

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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. 
367

State

Disability as 

Grounds for 

Termination 

of Parental 

Rights

Intellectual or 

Developmental 

Disability

Mental 

Illness

Emotional 

Disability

Physical 

Disability Other Citation and Language

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 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
368
369

APPENDIX C. Model Legislation (State or Federal)

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;
370

(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 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 
371

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 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, ChildRearing, 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— 
372

(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 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;
373

(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; 
374

(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. 
375

APPENDIX D. Proposed ADA Amendment

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;
376

(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 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.
377

(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 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;
378

(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 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.
379

§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 

services that may be necessary to address a parent’s disability, such as supportive 

housing, assertive community treatment, crisis services, peer supports, household 
380

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. 
381

(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.
382
383

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-treatment-rise-amidconcerns/print. 

16. Guardianship of Mary Moe, 960 N.E.2d 350 (Mass. App. Ct. 2012).
384

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.

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.
385

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://dsqsds.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.

58. Id.
386

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 Crosson-Tower, 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. 
387

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.

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.
388

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. 
389

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).

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. 
390

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). 

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.
391

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-bayarea-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.
392

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.

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 
393

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.

233. H.R. Rep. No. 485, Pt. 2, at 41.
394

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 
395

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.

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/factsabout-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.
396

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.
397

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.

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.
398

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.
399

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.
400

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”).

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.
401

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 
402

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).

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-gets-newborn-back-after-57-days.

408. Id.

409. Id.

410. Id.

411. Id.

412. Id.
403

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-inabuse-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/1323793110In-re-ChristianM-amicus-brief.pdf. 

435. Id.

436. McConnell and Llewellyn, Supra note 288, 891.
404

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-andstatistics.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.
405

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-fosterstudy_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.

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 %20courtsfinal.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).
406

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.
407

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).

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).
408

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-itseems.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.amaassn.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/Breast

CancerCenter/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).

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/paralyzedmother-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.
409

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-onautistic-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.
410

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.

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/congressvotes-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-legalaid-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.
411

586. Robert D. Zaslow, “Child Custody, Visitation, and the HIV Virus: Revisiting 

the Best Interests Doctrine to Insure Impartial Parental Rights Determinations for HIVInfected 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). 

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.), 
412

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. 
413

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.

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 
414

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, CA: 

Through the Looking Glass, 1998); Christi Tuleja and Anitra DeMoss, “Baby Care 
415

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 SelfInstructional 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. 
416

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.

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.
417

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/independentadoption. 

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.
418

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-odyssey-finding-aforeign-child-to-love. 

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-withdisabilities/parents-with-disabilities-the-quotmoms-networkquot-shares-info-resources. 

746. Id. at 185–186.
419

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-address-regs-that-would-stripprotections-against-discrimination/2011/12/14/gIQAT3hYtO_story.html. 

773. Id.
420

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?countryselect=russia. 

793. U.S. Department of State, “Ukraine, Intercountry Adoption,” accessed March 1, 

2012, http://adoption.state.gov/country_information/country_specific_info.php?countryselect=ukraine.

794. Kids to Adopt, “Bulgaria Adoption Program,” Accessed December 15, 2011. 

http://kidstoadopt.org/adoption-programs/bulgaria-adoption/. See also U.S. Department 
421

of State, “Bulgaria, Intercountry Adoption,” Accessed December 15, 2011. 

http://adoption.state.gov/country_information/country_specific_info.php?countryselect=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-blindadopting-blind-20110511_1_rupa-cta-bus-paula-sprecher. 

804. Id.

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/rockymountain-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.
422

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/GuidelinesLegal/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.
423

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.

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.
424

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.

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.
425

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/thecosts-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/censusfigures.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-theus.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.
426

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/michelle-andrews-oninfertility-coverage.aspx. 

907. “Insurance Coverage in Your State,” Resolve: The National Infertility 

Association, accessed February 1, 2012, http://www.resolve.org/family-buildingoptions/insurance_coverage/state-coverage.html. 

908. Id.

909. Id.

910. Id. 

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-buildingoptions/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-buildingoptions/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.
427

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.
428

947. For a discussion on the right to access surrogacy, see Coffey, Supra note 890. 

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.
429

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://bloom-parentingkidswithdisabilities.blogspot.com/2010/01/does-physical-disabilitymake-parent.html. 

983. Olmstead v. L.C. ex rel. Zimring, 527 U.S. 581 (1999).

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.
430

992. Id.

993. Id. at 6-1.

994. Centers for Medicare and Medicaid Services, State Medicaid Manual, CMS45 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.
431

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.)

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.
432

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), 
433

http://www.mathematica-mpr.com/publications/pdfs/Family_Support/tanfrecipeints_

Pavetti_0709.pdf. 

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-bayarea-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-incomesupplemental-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.
434

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.

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). 
435

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.
436

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.

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.
437

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.
438

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.

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/protection-advocacyprograms/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.
439

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.

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.
440

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/MariLubin

ResearchProjectPaper5-07_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.
441

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.

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.
442

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/victoryparents-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.

1278. Fred Wulczyn, Supra note 375, 97.

1279. Callow, Buckland, and Jones, Supra note 98. 

1280. Id.
443

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.
444

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.

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 
445

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.