Report to the President 

Strengthening an Inclusive Pathway for People with Intellectual Disabilities 

and Their Families 

2016
 

 

 

DISCLAIMER
 
 

This document, Report to the President—Strengthening an Inclusive Pathway for People with 

Intellectual Disabilities and Their Families—does not necessarily reflect the views of the United 

States Department of Health and Human Services (HHS) or the agencies represented by the ex 

officio members of the President’s Committee for People with Intellectual Disabilities (PCPID). 

Although some of the information and data contained in this Report were contributed by 

authorities in the fields of family support, education, disability research, public policy, and other 

related fields, the personal opinions that such contributors may hold or choose to express outside 

of this Report to the President do not necessarily reflect the views of the PCPID, HHS, or other 

federal agencies. 

In addition, this Report is not suggesting that the HHS-PCPID endorses any organization’s 

product, service, or personnel. 
President's Committee for People with Intellectual Disabilities 

Washington, D.C. 20447 

August 4, 2016 

President Barack Obama 

The White House 

1600 Pennsylvania Avenue, N.W. 

Washington, D.C. 20500 

Dear Mr. President: 

On behalf of the President's Committee for People with Intellectual Disabilities (PCPID), I wish 

to express appreciation for the honor to serve your Administration and the American people. 

The members of the President's Committee are committed to the fulfillment of the Committee's 

mission to provide advice and assistance to you and to the Secretary of Health and Human 

Services on a broad range of topics that relate to people with intellectual disabilities, and to the 

field of intellectual disabilities. For many of us, it is a personal relationship with intellectual 

disability that inspires us to work to improve the quality of life that is experienced by all people 

with intellectual disabilities and their families. 

Mr. President, the members of the President's Committee appreciate the opportunity to submit 

for your consideration the 2016 Report, Strengthening an Inclusive Pathway.for People with 

Intellectual Disabilities and Their Families. The intended outcome of this Report is to continue 

to increase the opportunities for full inclusion in all sectors of American life as envisioned by 

President John F. Kennedy in 1961 when he established a blue-ribbon panel to address the needs 

of people with intellectual disabilities and their families. 

The report specifically examines the following areas to determine how a path can be forged for 

people with intellectual disabilities to be included in all aspects of society for an engaged life: 

• Family Engagement early on in the process to support high expectations for students with 

disabilities 

• Federal Education Policies and enforcement strategies to end segregation in schools 

• Transitioning to adulthood as a critical timeframe for establishing paths to higher 

education and career development 

• Self-Determination and Supported Decision-Making from early childhood throughout the 

individual's life span 
Page 2of2 

Despite the efforts of people with intellectual disabilities, their family members, and the greater 

disability community, people with intellectual disabilities often are directed to a path that leads 

to limited work, isolation from their community, and limited options to pursue a full life. 

The members of the President's Committee believe it is time to change that path. It is time to 

integrate the trajectory for people with intellectual disabilities with the path of all citizens. It is 

time to meld together the supports people with intellectual disabilities need with the education, 

services, supports, and opp011unities to which all other American citizens have access. It is time 

for people with intellectual disabilities to follow a truly inclusive trajectory that will create the 

opportunities to be included, to be full participants, to live independently, and to be economically 

self-sufficient. 

We are hopeful that this Report will provide a strategy for strengthening federal policies to create 

t t new path and to place people with intellectual disabilities on a trajectory to full inclusion 

with a ess to opportunities for the highest possible quality of life. 

Jack M. Brandt, MS 

Chair 

 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

 
 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

TABLE OF CONTENTS
 

COMMITTEE PROFILE................................................................................................................ 1
 

EXECUTIVE SUMMARY ............................................................................................................ 3
 

INTRODUCTION .......................................................................................................................... 6
 

ORGANIZATION OF THE RECOMMENDATIONS................................................................ 13
 

Focus Area 1: Family Engagement........................................................................................... 15
 

Overview and Background ................................................................................................... 15
 

Family Tasks and Decisions ................................................................................................. 16
 

Supporting Families and Engagement .................................................................................. 19
 

Existing Federal Initiatives to Engage Families in Inclusive Trajectories ........................... 21
 

Recommendations: Family Engagement .............................................................................. 23
 

Focus Area 2: Education Policies ............................................................................................. 31
 

Overview and Background: .................................................................................................. 31
 

Barriers and Possible Solutions ............................................................................................ 34
 

Recommendations: Education Policies................................................................................. 36
 

Focus Area 3: Transition........................................................................................................... 45
 

Overview and Background: .................................................................................................. 45
 

Postsecondary Education ...................................................................................................... 46
 

Recommendations: Postsecondary Education ...................................................................... 49
 

Community Living................................................................................................................ 51
 

Recommendations: Community Living................................................................................ 53
 

Employment.......................................................................................................................... 55
 

Recommendations: Employment.......................................................................................... 57
 

Focus Area 4: Self-Determination and Supported Decision-Making....................................... 61
 

Overview and Background: .................................................................................................. 61
 

Guardianship as a Barrier to Self-Determination.................................................................. 62
 

Supported Decision-Making ................................................................................................. 64
 

Recommendations: Self-Determination and Supported Decision-Making........................... 66
 

REFERENCES ............................................................................................................................. 70
 

FREQUENTLY USED ACRONYMS ......................................................................................... 85
 

THE PRESIDENT’S COMMITTEE FOR PEOPLE WITH INTELLECTUAL DISABILITIES: 

MEMBERS...................................................................................................................................... i
 

PCPID CITIZEN MEMBERS ..................................................................................................... i
 

EX OFFICIO MEMBERS AND REPRESENTATIVES........................................................... ii
 

ADDITIONAL ACKNOWLEDGMENTS ............................................................................... vi
 
 

 

 

 

 

 

 

 

 


 


 

COMMITTEE PROFILE
 

Americans with intellectual disabilities (ID) experience significant limitations in both intellectual 

functioning and adaptive behavior, which covers many everyday social and practical skills. This 

disability, using the definition set forth by the American Association on Intellectual and 

Developmental Disabilities, originates before the age of 18. 

Intellectual disability and developmental disability (DD) are not the same thing. DD is an 

umbrella term that includes ID, but also includes other disabilities apparent during childhood, 

such as physical, motor, neurological, psychological, or sensory disabilities. High-quality 

inclusive services and supports (including natural, unpaid supports) in the education, health, 

employment, family, and other arenas often assist people with ID and DD to live full lives in 

their communities. 

A portion of the research in the United States has focused on the prevalence of intellectual 

disability and the numbers of people affected. However, the findings of these research studies 

are not consistent. Estimates of people in the United States who have an ID or a DD range from 

1 to 3 percent of the population, over six million citizens (Bryant, Seok, Ok, & Bryant, 2012). 

In 1961, President John F. Kennedy called the nation’s attention to deplorable living conditions 

in institutions and limited opportunities for people with ID in communities across the United 

States. To ensure the right of a “decent, dignified place in society” for people with ID, in 1966 

President Lyndon B. Johnson established the President’s Committee on Mental Retardation. To 

underscore the importance of respect and facilitate the removal of negative labeling, on April 25, 

2003, the Committee was renamed the President’s Committee for People with Intellectual 

Disabilities (PCPID). 

PCPID serves in an advisory capacity to the President of the United States of America and the 

Secretary of Health and Human Services (HHS) on matters related to individuals with ID. The 

Committee upholds the right of all people with ID to pursue a quality of life that promotes 

independence, self-determination, and economic self-sufficiency. Presidential Executive Order 

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12994, as amended by Executive Orders 13309 and 13446, stipulates that the Committee shall 

provide advice to the President concerning the following: expansion of educational 

opportunities; promotion of homeownership; assurances of workplace integration; improvement 

of transportation options; expansion of full access to community living; and increased access to 

technology. 

The Committee currently consists of thirteen citizen members appointed by the President, 

including a Chair who is responsible for planning the PCPID strategic direction, and thirteen ex 

officio (federal government) members designated by the President. The thirteen ex officio 

members are the Secretary of Health and Human Services, the Secretary of Education, the 

Secretary of Labor, the Secretary of Housing and Urban Development, the Secretary of 

Commerce, the Secretary of Transportation, the Secretary of the Interior, the Secretary of 

Homeland Security, the Attorney General of the United States, the CEO of the Corporation for 

National and Community Service, the Chair of the Equal Employment Opportunity Commission, 

the Chair of the National Council on Disability, and the Commissioner of the Social Security 

Administration. 

PCPID is supported by federal employees and led by the Commissioner of the Administration on 

Disabilities (AoD), who also serves as the Committee’s Designated Federal Officer. Within the 

AoD, the Administration on Intellectual and Developmental Disabilities (AIDD) is the federal 

agency responsible for implementation and administration of the Developmental Disabilities 

Assistance and Bill of Rights Act of 2000 (DD Act). Organizationally, AoD is located within the 

Administration for Community Living (ACL) at the U.S. Department of Health and Human 

Services. 

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EXECUTIVE SUMMARY
 

Great strides have been made since 1961 when President John F. Kennedy established a 

blue-ribbon panel to address the needs of people with intellectual disabilities (ID) and their 

families. The U.S. government and the states have addressed the needs of people with ID by 

opening the school doors, increasing health care options, conducting research into needed 

supports for individuals and their families, and acknowledging the over six million citizens with 

intellectual and developmental disabilities as an important part of our national fabric. 

Despite these advances, the trajectory for a person with an intellectual disability remains 

limited. Recent research focused on expectations (low) for people with ID has shown that the 

advances made are not sufficient. In two states, Rhode Island and Oregon, young people with 

disabilities were routinely directed to subminimum wage and segregated employment options. 

When these practices were examined by the Department of Justice, they were found to be in 

violation of the Americans with Disabilities Act (ADA) and the 1999 Supreme Court Olmstead 

decision requiring that programming be provided in ways that support people with disabilities to 

work, learn, and participate alongside their peers without disabilities. 

The President’s Committee for People with Intellectual Disabilities has examined the 

following four areas to determine how a new path can be forged for people with ID to be 

included in all aspects of society as full participants and full opportunities for an engaged life: 

1.	 Family Engagement early on in the process to support high expectations for students 

with disabilities 

To begin, families of newborns and children with disabilities must be provided with the 

knowledge and supports to learn the possibilities for their children with ID. While strong 

messages regarding inclusion and high expectations come from many experienced 

families, self-advocates, and the greater disability community, families may still hear 

antiquated messages about their children’s options. To combat these outdated messages 

and to provide families with the support and knowledge they need to help create the best 

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opportunities for their children with ID, PCPID recommends a coordinated effort on the 

part of executive branch agencies to communicate as early as possible with families about 

the available supports and possibilities for their children with ID related to education, 

employment, health, and inclusive community living. 

2.	 Federal Education Policies and enforcement strategies to end segregation in schools 

The President’s Committee also found that education is a key component to directing 

young people with ID to a path of full citizenship and inclusion in their communities. 

Though great strides have been made to improving the academic outcomes for students 

with disabilities, challenges remain. Students with ID are often excluded from the general 

education classrooms, have significantly lower graduation rates, and rarely participate in 

postsecondary education. PCPID recommends that all educational settings be made more 

accessible, particularly using principles of universal design for learning, as well as 

improving the preparation of all teachers to be able to address the educational 

achievement needs of children with disabilities. 

3.	 Transition as a critical timeframe for establishing paths to higher education and career 

development 

To continue to improve the trajectory toward positive outcomes for people with ID, 

PCPID found that transition from school to postsecondary education and the workplace 

plays a major role. This is a time for youth with ID to begin to move from the safety and 

comfort of home to the uncertainty of adulthood and start to take on the responsibilities 

that come with that transition. To ensure this critical time period results in positive 

outcomes for young people with ID, PCPID recommends increasing postsecondary 

education options, identifying people with ID as a medically underserved population in 

order to increase health care resources, expanding mobility management instruction to 

increase transportation options, and ensuring that all young people with ID have the 

opportunity to participate in competitive, integrated work-based learning before leaving 

school. 

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4.	 Self-Determination and Supported Decision-Making from early childhood throughout 

the individual’s life span 

Finally, the President’s Committee examined the topics of self-determination and 

supported decision-making as means for increasing opportunities for people with ID. 

Research findings are clear that when people with ID have the opportunity to learn about 

residential, employment, health care, education, and social options, they are able to make 

decisions or assist in making decisions and their quality of life is greater than when they 

do not have those choices. PCPID recommends that executive branch agencies, 

particularly the Administration for Community Living and the Office of Special 

Education and Rehabilitation Services, promote self-determination and supported 

decision-making instruction among their programs and as part of all of their grant 

programs. 

The trajectory for people with ID has improved during the past 50 years. To continue 

that improvement and to reach the goals of the ADA in ensuring full participation and economic 

self-sufficiency for all people with ID, the path needs to be strengthened. To achieve these 

goals, the U.S. society must have high expectations and provide opportunities for people with ID 

to experience the quality of life envisioned by self-advocates and disability leaders since 

President Kennedy issued his charge in 1961. 

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INTRODUCTION
 

The Declaration of Independence, in its most important passage, proclaims: 

We hold these truths to be self-evident, that all men are created equal, that they 

are endowed by their Creator with certain unalienable Rights, that among these 

are Life, Liberty and the pursuit of Happiness. That to secure these rights, 

Governments are instituted among Men, deriving their just powers from the 

consent of the governed. 

Our founding document affirms that all people are created equal and that all have a right 

to the same opportunities. Our country’s history is a long journey to making this declaration 

true, a journey we are still working to complete. 

Our Constitution, unfortunately, established our country as one that separated and 

segregated groups of people. Until amended, it did not recognize women or persons of color as 

full citizens. And, as with many issues, the proclaimed values of our founding documents 

sometimes were met with fractured implementation. For the past 229 years, we have been 

working to make the Constitution’s declared principles of equality a reality for all citizens. 

Through a series of Supreme Court rulings, such as Plessy v. Ferguson, and laws such as 

those allowing for literacy tests in some southern states, from the late 1800s through the 1960s 

people of color were systematically excluded from some of the most basic functions of our 

society, including owning homes, attending schools, and voting. 

For people with disabilities, particularly for those with intellectual disabilities (ID), the 

path to full citizenship and inclusion in American society has been similar to the road traveled by 

women and people of color. The journey has been long and filled with barriers—physical, legal, 

and attitudinal. Yet, even at the birth of our country, disability was present. 

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Stephen Hopkins, a nine-time governor of the colony of Rhode Island and one of its 

representatives to the Second Continental Congress, had cerebral palsy (Bjorklund, 2007). As he 

signed the Declaration of Independence, he said, “My hand trembles, but my heart does not.” 

Disability was also present by way of family connections at the signing of the 

Declaration. The primary author, Thomas Jefferson, had two siblings with disabilities. His 

brother, Randolph, most likely had a significant learning disability, resulting in difficulties in 

writing, reading, and calculations (Richards & Singer, 1998). His sister, Elizabeth, had an 

intellectual disability (Brodie, 1974; Mapp, 1987; Randolph, 1958). Jefferson was especially 

devoted to his sister and cared for her after the death of his parents, ensuring that she was treated 

with dignity and lived a life of “well-being” (Smith, 2007, p. 407). 

Despite the presence of disability at the founding of our country, the reality for most 

people with ID was not one of acceptance and inclusion. Instead, a system of segregation and 

low or no expectations existed. Those systemic barriers and attitudes did not begin to crumble 

until the country was almost 200 years old, and we continue to confront such barriers today. 

While some of the earliest laws of our country dictated the establishment of public 

schools (e.g., the Land Ordinance of 1785), during the first fifty years of the United States’ 

existence a separate, segregated patchwork system of education and services took shape for 

people with ID. By the mid-1800s, a long list of asylums and institutions had been established 

for children and adults with disabilities. These included the Massachusetts Experimental School 

for Teaching and Training Idiotic Children (1848), the New York State Asylum for Idiots (1851), 

and the Pennsylvania Training School for Feeble-Minded Children (1853). 

Our country sent its citizens dual messages. It said that all people deserved opportunities 

to excel and, at the same time, that some people were not worthy of or should not be given those 

opportunities. The founders of those early schools and asylums, such as Samuel Howe, 

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acknowledged the ability of people with ID to learn, even while offering curricula and 

experiences that separated them from general society and expected far less of them than of 

children and youth without such disabilities. When established, these segregated facilities were 

seen as a humane way to address the needs of people with ID and their families while separating 

them from the rest of society. Since then, we have learned that separate experiences are unequal 

experiences. 

With the publication of Darwin’s On the Origin of Species in 1859, a new and more 

ominous reason for separation of people with ID began to form in our country: the elimination of 

people considered “inferior.” In the late 1800s, states began to establish laws that prohibited 

people with ID and other types of disabilities from marrying. By the early 1900s, thirty states 

had compulsory sterilization laws for people with ID. In 1926, the Supreme Court of the United 

States legitimized forced sterilization of people with ID. In the Buck v. Bell case, the Supreme 

Court issued a decision allowing Virginia to sterilize a young woman who was identified as 

having an intellectual disability. From that time until the mid-1960s, over 60,000 forced 

sterilizations were performed on people with ID. The sense that a disabled life is worth less than 

a non-disabled life remains with us. Whether in philosophy (Singer, 1980), the courtroom 

(Gross, 2013), or popular culture (Ladau, 2016), the indirect and sometimes direct message is 

that it is sometimes acceptable to kill a person with disability when our norms would never 

permit the killing of a person without disability. 

From the late 1800s until the early 1970s, the number of institutions for people with ID 

increased significantly. Most of these were established by states and located in rural settings, far 

from where residents’ families lived. These new institutions, along with the original ones to 

educate children and serve adults, created a culture of separation and segregation of people with 

ID. The institutions also reinforced the messages that people with ID should be taken care of far 

from the general public and that if they remained at home, they would be a burden for both their 

families and their communities (Turnbull & Turnbull, 1978). 

During this time period, the systematic institutionalization of children, youth, and adults 

with ID reinforced the low expectations society had for them. Physicians would often counsel 

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parents that their children with Down syndrome or other types of intellectual disability would 

never be able to read, have friends, interact within typical society, or hold a job. The medical 

community routinely recommended that children with ID be institutionalized and that parents 

“forget” about them. 

By the mid-20th century, however, the conventional wisdom about people with ID began 

to be questioned. As segregation and separation were challenged along racial lines in the post– 

World War II era, so too were the separation and segregation of people with ID questioned. The 

change occurred because families began to question and disagree with the advice offered by the 

medical community. Pioneers such as Elizabeth Boggs and Patti McGill Smith, themselves 

parents of individuals with ID, resisted the recommendations of physicians that they “give up” 

their children. Instead, these and other pioneers of the family disability rights movement began 

their own schools for their children with ID. They formed support groups to care for one 

another’s children. They banded together to advocate for education and services for their 

children and adult family members with ID. In the 1950s, they became a political force, and by 

1961, they had an ally in the White House: President John F. Kennedy, who shared the 

experience of having a family member with an intellectual disability, his sister Rosemary. 

The efforts of those family pioneers resulted in such organizations as The Arc of the 

United States, Easter Seals, and many local and state family support organizations, which in turn 

developed schools and services. The parents who led those organizations also advocated for 

their children to attend neighborhood schools and to be part of their communities. They 

petitioned their local, state, and federal government representatives and sued localities and states 

to allow their children with ID access to the services and activities available to children and 

youth without disabilities. 

Throughout the 1950s, ’60s, and ’70s, their efforts resulted in judicial decisions and new 

laws that opened schools and services to people with ID. The landmark cases of PARC v. the 

Commonwealth of Pennsylvania (1971) and Mills v. the Board of Education of the District of 

Columbia (1972) confirmed the legal right of children with disabilities to have access to 

education, just as their non-disabled peers did. 

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The passage of the Rehabilitation Act of 1973 and the Education for All Handicapped 

Children Act of 1975 (now known as the Individuals with Disabilities Education Act, or IDEA) 

established standards for access to government services and education for all people with 

disabilities, including those with ID. 

However, despite the herculean efforts of families, self-advocates, legislators, and allies, 

and decades after the passage of disability civil rights laws, there remain vestiges of our 

country’s history that segregate people with ID. One shocking example is from our public 

schools. Though a key component of IDEA, known as “least restrictive environment,” calls for 

children with ID to be taught alongside their peers in the general education setting to the greatest 

degree possible, the most recent report from U.S. Department of Education indicates that a 

majority (56.7%) of children with ID are still taught in segregated settings (Kleinert et al., 2015; 

add OSERS). 

In fact, the very notion of “special education” signifies education that is separate from 

and different than the education received by all other children. Disability services are seen as 

something different than other human and social services and, by definition, as services 

furnished by specialized providers. 

Two recent examples of the continued existence of low expectations and an assumption 

of segregation are among findings of the U.S. Department of Justice in Oregon and in Rhode 

Island. 

In 2012 in Oregon, the U.S. Department of Justice found that people with ID were 

systematically placed in segregated employment settings that paid subminimum wage without 

efforts to provide them opportunities to work in competitive integrated settings. In December 

2015, the Department of Justice reached a settlement agreement with Oregon to vindicate the 

rights of over 7,000 Oregonians with intellectual and developmental disabilities to leave 

segregated work environments and find employment in competitive integrated settings. Over 

4,900 of those served by this settlement are youth under the age of 24. 

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In 2014 in Rhode Island, the U.S. Department of Justice found that young people with ID 

who were leaving school and transitioning to the community were routinely placed in programs 

that paid subminimum wage or segregated day treatment programs and that adults were 

unnecessarily segregated in adult day service programs including sheltered workshops. This 

occurred despite the 1999 Supreme Court Olmstead decision that the ADA requires the 

government to provide services to people with disabilities in the most integrated setting 

appropriate. The Justice Department also found that youth as young as fourteen were being 

directed to programs that prepared them to work in segregated, subminimum-wage positions 

without options to attempt or experience postsecondary education or competitive integrated 

employment. This systematic assumption at such an early age that people with ID could not be 

part of the community, work in integrated settings, benefit from postsecondary education, and be 

contributing members of society is an example of the legacy of low expectations and the felt 

need to provide separate, segregated services for people with ID. In April 2014, the Department 

of Justice reached a settlement agreement with Rhode Island to vindicate the rights of over 3,250 

people in Rhode Island to obtain competitive employment, appropriate transition services, or 

both. 

Both these examples involved state employment service systems and systemic and 

unjustified reliance on segregated settings that spanned decades; it was not a matter of isolated 

instances of funneling one or two young people with ID to segregated work settings. These 

long-term practices affect thousands of people with ID nationwide and are evidence that the 

historic low expectations and traditionally segregated supports for people with ID remain part of 

our country’s culture. Indeed, many of the very service systems designed to support people with 

ID and their families retain the seeds of segregation to this day. 

This lingering sense of separateness, whether seen or unseen, intended or unintended, 

means that people with disabilities are directed to follow a different path than all other citizens, a 

path that leads to lower levels of education, lower levels of employment, and higher levels of 

poverty. 

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It is time to change that path. It is time to integrate the trajectory for people with ID with 

that of all other citizens. It is time to meld together the supports people with ID need with the 

education, services, supports, and opportunities to which all other Americans have access. It is 

time for people with ID to follow a new and truly inclusive trajectory that will create 

opportunities to be included, to be full participants, to live independently, and to be economically 

self-sufficient. 

With this Report, PCPID provides a strategy for using federal policies to strengthen an 

inclusive pathway for people with ID and their families. 

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ORGANIZATION OF THE RECOMMENDATIONS
 

Recommendations in this 2016 PCPID Report to the President are organized to highlight the 

following four focus areas: 

1.	 Family Engagement early on in the process to support high expectations for students 

with disabilities 

2.	 Federal Education Policies and enforcement strategies to end segregation in schools 

3.	 Transition as a critical timeframe for establishing paths to higher education and career 

development 

4.	 Self-Determination and Supported Decision-Making from early childhood throughout 

the individual’s life span 

With these recommendations, the PCPID working groups of self-advocates, experts, 

leaders, and advocates strive to contribute to federal policy that will: 1) create high expectations 

from all sectors of society for people with ID, 2) support families in receiving and using 

information to maximize the lives of their children with disabilities and support their family 

structure, 3) create paths that recognize competence and ability of people with ID, and 4) 

establish trajectories that create and sustain services, supports, and resources to enable people 

with ID to achieve the goals of the Americans with Disabilities Act: to take advantage of equal 

opportunity in all sectors of life, to be fully included in all aspects of society, to be able to live 

independently, and to be able to achieve economic self-sufficiency. 

The text of each focus area includes a brief summary of research, existing barriers and 

challenges, and recommendations for addressing barriers and improving federal policies in order 

to meet the stated goals. 

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Finally, the PCPID wishes to direct attention to a fortuitous and timely occurrence: the 

work of a large group of stakeholders who, in the summer of 2015, established a set of goals for 

the field of intellectual disability. This group, which included people with ID, family members, 

researchers, and service providers, gathered at the 2015 National Goals Conference to create 

goals for the next decade focused on increasing the inclusion of people with ID in everyday U.S. 

society. Their work is parallel to and supportive of the PCPID’s recommendations, and the 

Committee considers the publication that arose from the National Goals Conference, Critical 

Issues in Intellectual and Developmental Disabilities (AAIDD, 2016), a companion to this 

Report. 

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Focus Area 1: Family1 

1 For this Report, family refers to all forms and that includes children in foster care 

Engagement 

Overview and Background: 

All citizens, including those with ID, should have the right not only to be present in their 

community but also to be socially and economically connected to that community. All citizens, 

including those with ID, should have the right to live self-determined lives, meaning that they 

have the opportunity to set goals for their lives and can take action toward achieving those goals 

(Turnbull & Turnbull, 2006). 

Despite the considerable progress made over the past several decades, too many people 

with ID remain socially, economically, and physically excluded from the communities of their 

families and neighbors. People with ID face many societal barriers to meaningful inclusion and 

self-determination. Families, however, play an essential role in breaking down these barriers and 

promoting opportunities for inclusion and self-determination. Parents’ expectations of their 

children and of the world in which they live and interact help determine their children’s longterm outcomes. A recent study found that when parents have the expectation that their children 

with ID will work after high school, it is five times more likely that their young-adult child will 

have a job in a competitive integrated workplace (Carter, Austin, & Trainer, 2012). The 

effective engaging of families by professionals early and often can help achieve the goals of selfdetermination and inclusion for all citizens across the nation. 

For people with intellectual and developmental disabilities, some of whom have lifelong 

needs, families most often serve as the primary provider of physical, economic, and emotional 

support. In the United States, only 25 percent of people with intellectual and developmental 

disabilities receive formal, paid services, and of those people, approximately half receive such 

services while living in their family home (Braddock et al., 2015; Larson et al., 2014). 

Over the past ten years, the number of people receiving formal supports while living with 

their families has grown 3.3 times more rapidly than for those not living with family (Larson, 

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Ryan, Salmi, Smith, & Wuorio, 2012). In most of these households, parents and siblings provide 

the majority of care. In fact, unpaid caregivers provide approximately $335 billion worth of 

caregiving annually to family members with disabilities (Feinberg, Reinhard, Houser, & Choula, 

2011). However, in 2013, only 6.7 percent of all public funding for developmental disability 

services went to formal family supports such as respite care, family training, and counseling 

(Braddock et al., 2015). In about 25 percent of homes where a person with an intellectual 

disability lives with a family member, the family caregiver is over the age of 60 and may at some 

point find themselves in need of care (Factor et al, 2012). 

Family Tasks and Decisions 

Parents and family members of children with disabilities face a multitude of unexpected 

decisions and tasks. Upon a child’s ID diagnosis, parents may face a sense of loss (Ludlow, 

Skelly, C., & Rohleder, 2011). Many go through a process of re-conceptualizing roles and 

expectations for themselves and their children in a society where awareness of people with 

disabilities is limited and the view of them is often narrow. At the same time, the type of support 

and encouragement families receive early on from professionals can play an important role in the 

family’s outlook and their setting of expectations for their child (Heiman, 2002; Sanders, 2006). 

Some parents, for the first time through their connection with their child, find themselves part of 

a marginalized underrepresented group for whom access to their community is difficult 

(Ferguson, 2001). For members of families in the minority linguistically, socioeconomically, 

racially, or in terms of gender and/or sexuality, new experiences with society’s lack of 

accommodations for and acceptance of those who function differently intersect with already 

marginalized identities, making it all the more difficult to access the supports needed (Vargas et 

al., 2012). Parents of children with additional care needs must learn to navigate complex health 

care and educational systems and to take on not only the task of care provision but also that of 

service coordination and advocacy (Vargas et al., 2012). Although there are many positive 

aspects of caregiving (Heller, Miller, & Factor, 1997), caregivers often face insufficient access to 

health care, symptoms of depression, and financial hardships (Davenport & Eidelman, 2008; Ha, 

Hong, Seltzer, & Greenberg, 2008). Families often have difficulty finding paid support services 

due to lack of awareness of services, lack of knowledge about the process for obtaining services, 

16
 
 

 

 

 

 

 

 

 

 

 

 


 

lack of availability of and waiting lists for services, financial barriers, and lack of transportation 

(Chou, Lee, Lin, Chang, & Huang, 2008; Samuel, Hobden, LeRoy, & Lacey, 2011). 

Many families have unmet support needs. A study conducted by The Arc of the United 

States on the perception of family caregivers on a range of issues across the life span found that 

most caregivers believed their loved one with an intellectual disability was not being fully 

included in school or in the workforce (The Arc, 2011). Many families reported not feeling 

prepared for a future in which they might not be able to care for their family member with a 

disability. Most families also reported physical, psychological, and financial strain as a result of 

limited or nonexistent supports (The Arc, 2011). 

Families of people with ID have played a vital role in the development and advancement 

of the disability rights movement. Their advocacy has helped, and continues to help, create a 

path toward more inclusive schools and communities, as well as greater opportunities for people 

with ID (Carrie, 2009). Read (2000) provides evidence that mothers of children with ID often 

work to produce opportunities for their children not only in day-to-day situations but also 

through work as activists. The disability rights movement has spurred a societal shift in the 

understanding of ID and the role of formal and informal support systems, often composed of 

family members. 

Intellectual disabilities, like other disabilities, are becoming recognized more and more as 

a natural aspect of human diversity. Support services are increasingly seen as a means to assist 

individuals with ID to access their human and civil rights, which include being treated with 

dignity and respect, making their own life goal decisions, and taking action toward those goals. 

Family members play a vital role in shaping the opportunities people with ID have to develop 

self-determination skills and behaviors, learn decision-making skills, and connect with their 

communities (Brotherson, Cook, Erwin, & Weigel, 2008). 

17
 
 

 

 

 

 

 

 

 

 

 

 

 

 


 

The ability to define one’s life goals and 

take action to achieve them becomes 

increasingly important throughout the life 

course (Turnbull & Turnbull, 2006). 

However, self-determination does not 

inevitably emerge as a person ages. The 

development of self-determination skills 

needs to be supported and nurtured 

(Turnbull & Turnbull, 2006). 

It is often believed that individuals 

with ID have restricted opportunities for 

self-determination and choice-making due 

to social barriers including limitations in 

communication, lack of decisions to be 

made and low expectations of them. 

Families can play a key role in supporting 

the early development of selfdetermination by providing and 

maintaining a child’s opportunities for 

choice and decision-making in day-to-day 

activities (Shogren & Turnbull, 2006). 

Families shape the home setting that often 

serves as the child’s primary learning 

environment and frequently have input on 

their child’s placement in inclusive or 

segregated educational services (Dunst, 

Hamby, Trivete, Raab, & Bruder, 2002). 

The Perry Family 

Expectations are a two-way street. We have high 

expectations for our son, a 9-year-old with Down 

syndrome, but he also gets to have high 

expectations for us – not just his parents, but the 

society in which he lives. We expect him to learn, 

and grow, and become independent, to pursue 

education, employment, and friendships of all sorts. 

We expect society to provide pathways for people 

with intellectual and development disabilities to 

achieve these things, and work hard to ensure those 

opportunities exist (and not just for white, upper 

middle class families like ours). 

Take speech, for example. Our son is functionally 

non-verbal, but highly communicative. He has 

hundreds of words that he utters in approximate 

sounds (jargon), a few clear words, does some sign 

language, can read, and uses a speech app. Our 

expectation is that as he gets older, he’ll be able to 

communicate as needed, whether with verbal 

speech or by pulling out a phone and launching an 

app. He’s working hard to master those skills. 

Is society doing the work it needs to do? When he 

doesn’t respond right away, whether to a 

salesperson behind a register, a friend playing 

Frisbee at the park, or a police officer asking for 

proof of identity, will they be patient as he types 

into his app, or will they turn away, try to speak for 

him, or even get physical from frustration? Nico 

will be ready. I wish I could be sure society was 

going to be. 

Nico and his sister, Ellie, getting ready for school. 

Families have been found to 

influence their child’s expectations, 

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options, and decisions regarding employment as well. Family members often introduce the idea 

of employment, are sought out by the young person for advice, and frequently serve as models of 

a work ethic (Ankeny, Wilkins, & Spain, 2009; Way & Rossman, 1996). Family members also 

provide significant practical support, such as transportation and help with skill development, 

enabling people with ID to maintain competitive integrated employment (Dixon & Reddacliff, 

2001). 

As people with intellectual disabilities age, family members continue to play a role in 

shaping opportunities for them. The number of people 60 and over with ID is projected to more 

than double to 1.2 million by 2030 (Factor, Heller, & Janicki, 2012). For the first time in history, 

the life span of people with disabilities, including ID, is almost comparable to that of people 

without disabilities. As people with ID grow older, along with their family caregivers, families 

may need to look for formal supports (Heller, Caldwell, & Factor, 2007). Planning prior to crisis 

may help increase opportunities for self-determination and avoid restrictive residential 

placements (Heller, Caldwell, & Factor, 2007). Although every family is different, many 

siblings of people with ID expect to take a greater role in caregiving and support as their parents 

age. These siblings may also then take on the role of supporting their loved one with ID in 

realizing their right to self-direction. 

Based on very recent data, Smith (2016) found that people with ID living in specific 

family arrangements had greater outcomes when it came to independence, self-sufficiency, and 

quality of life. For instance, individuals without a formal guardianship arrangement had more 

positive outcomes than those with such an arrangement. He also found that those who lived in 

informal, unlicensed family arrangements and who were employed had the best outcomes. 

Supporting Families and Engagement 

Supporting families is a complex and individualized process. At the Wingspread 

coalition gathering on supporting families in 2011, stakeholders from across the country agreed 

that the goal of supporting families “is to maximize their capacity, strengths, and unique abilities 

so they can best support, nurture, love, and facilitate opportunities for the achievement of self19
 
 

 

 

 

 

 

 

 

 

 

 


 

determination, interdependence, productivity, integration, and inclusion in all facets of 

community life for their family members” (Hecht & Reynolds, 2011). 

Supporting families, both formally through paid programs and informally, has been 

determined to benefit the individual in the family as well as the family as a whole (Hecht & 

Reynolds, 2011). For instance, family expectations can be influenced by the information they do 

or do not receive, how the information is delivered, and, for school-age children, how family 

members perceive their children are progressing in school (Hirano & Rowe, 2015). In order for 

the trajectory of people with ID to change from segregation and exclusion to meaningful 

inclusion, families will need information, support, and service options. The earlier families 

receive information about high expectations and positive outcomes for their children, the more 

likely children will attain more advanced skills and abilities. Education decisions (e.g., ensuring 

that a child has access to general education instruction and remains on the path to a general 

education diploma) have a long-term impact on the adult lives of people with ID (Daviso et al., 

2011). When families have access to evidence-based knowledge of what services and supports 

will positively impact their child in the long term, they become more active advocates for 

securing those services and supports (Hirano & Rowe, 2015). 

Professionals in health care, education and other disciplines play a significant role in 

helping families develop expectations for their children with ID. While there is no 

comprehensive family support system in the United States, there are a patchwork of services and 

supports from governments at all levels and from non-profit agencies, family networks, and 

faith-based organizations. These family supports include the traditional services such as respite 

services as well as the more comprehensive and critical services that address the psycho-social, 

socio-emotional, financial, and physical needs of family caregivers. 

Government interventions may include the provision of long-term services and supports, 

including care coordination. A popular service delivery model that maximizes beneficiary 

autonomy is known as self-direction or consumer-direction, in which participants and their 

families can manage their own service budget through Medicaid Home and Community Based 

Service (HCBS) waivers. When this model is chosen by the state, individuals and families 

20
 
 

 

 

 

 

 

 

 


 

directly hire home health aides or personal assistants, as well as decide whether to access day 

programs, transportation, and/or assistive technology within an overall budget (Heller, Gibbons, 

& Fisher, 2015). Programs also might include funding for respite care, which involves shortterm reprieve from caregiving. Care-coordination interventions are programs in which 

professionals streamline the process of obtaining and scheduling services and ensuring that 

families are aware of and have access to service options (Heller, Gibbons, & Fisher, 2015). 

A very small federal program, the Lifespan Respite Care Program, provides funding to 

states to support respite care and services for families. The program, however, has been funded 

at such low level (approximately $2.5 million annually for the past five years) that it can support 

only a very few families, leaving states with extensive waiting lists. 

Existing Federal Initiatives to Engage Families in Inclusive Trajectories 

A number of federal programs are poised to both inform and support families as they in 

turn support their family members with intellectual disabilities in moving from segregated and 

separate lives to more fully included lives. 

Foremost among these programs is Part C of the Individuals with Disabilities Education 

Act (IDEA), also known as the Early Intervention Program for Infants and Toddlers. The 

program, passed in 1986 as part of the reauthorization of the Education for All Handicapped 

Children Act, operates from the philosophy that the family is the system that supports a very 

young child with a disability. Both the child with a disability and the family members are the 

target of this program. 

Two other components of IDEA focus on families and their support of children and youth 

with disabilities. Part B, the preschool-through-age-222 

2 With the exception of Michigan, where IDEA eligibility extends through the 26th birthday 

special education program, requires that 

parents be part of the educational planning for their children with disabilities. IDEA also ensures 

21
 
 

 

 

 

 

 

 

 

 


 

that family members are involved in the transition planning process for youth with disabilities 

from high school to postsecondary education and employment. 

IDEA also authorizes what are known as parent training and information centers (also 

known as PTIs) that serve parents of children from birth to age 22 (age 26 in Michigan) with all 

types of disabilities. These parent centers provide information and instruction about special 

education, particularly to underserved parents and parents of children who may be 

inappropriately identified as needing special education. In addition to their information and 

education role, the centers assist in dispute resolution between families and local school 

districts. The centers provide family members with information about the mediation process 

and their due process rights under IDEA and assist in facilitating resolutions. 

Promoting Readiness of Minors in Supplemental Security Income (PROMISE) is an 

interagency collaboration of the U.S. Department of Education (the lead agency), Health and 

Human Services, Labor, and the Social Security Administration. Under this program, state 

agencies have partnered to develop and implement model demonstration projects that provide 

coordinated services and supports designed to improve the education and career outcomes of 

children with disabilities who receive Supplemental Security Income (SSI). Services target both 

the eligible youth and their families. In five states and a six-state consortium, youth with 

disabilities, including ID, and their families are receiving interventions to increase the likelihood 

that the youth will attend postsecondary education and secure competitive integrated 

employment. Two important components of the program are family support and counseling to 

provide information about possibilities for their children, and self-determination skill 

development for the youth themselves. Previous studies (Haber et al., 2016; Test et al., 2009) 

indicate that providing families with information about possibilities for their children and 

providing self-determination skill development for youth increase young people’s likelihood of 

continuing with education and obtaining a job. 

Finally, the ACL-Family Information System Project (FISP) has documented the need for 

additional information about what supports families need in order to ensure that their children 

experience a higher quality of life. The many barriers and decisions faced by families, as well as 

22
 
 

 

 

 

 


 

the lack of information about possible outcomes for their children with ID, must continue to be 

addressed. 

Recommendations: Family Engagement 

Recommendation #1: Create a task force consisting of federal agencies and stakeholders to 

identify the key information and services necessary to support family members in gaining 

skills and knowledge to foster self-determination and to advocate for the inclusion of their 

child with intellectual disabilities in the community. 

The structure for providing such information and skills is in place; however, the specific 

content has not been identified and systematically developed for families. A cross-agency task 

force, led by the individuals with ID and including family members, researchers, and service 

providers, should identify the key information and skills necessary to promote self-determination 

in children and youth with ID. 

Recommendation #2: Expand the infrastructure of the IDEA-funded Parent Training 

Information (PTI) centers to provide families and service providers with the most up-todate and culturally component evidence-based information regarding the impact of high 

expectations for children with disabilities. 

Expand the investment in PTIs to increase their ability to raise the expectations of family 

members, professionals, and community members related to the opportunities for individuals 

with ID. PTIs should increase public awareness of positive outcomes for children and youth 

with ID and share success stories from their geographic service area and across the country. 

Also, included in the expanded charge should be a focus on helping families learn about selfdetermination and supported decision-making for children and youth with ID and the possible 

positive outcomes of teaching those skills. 

23
 
 

 

 

 

 

 

 

 


 

Recommendation #3: Expand investments in personnel development in education, allied 

health, and human services focusing on family support and increased expectations for 

people with intellectual disabilities. 

During budget preparations and in budget negotiations, advocate for increased funding 

for IDEA Part D programs that prepare teachers and faculty members to support families. 

Encourage including in these personnel-preparation programs information on self-determination, 

supported decision-making, and family support, as well as the leading predictors of postschool 

success for individuals with ID. 

Additionally, advocate for increased funding for the Leadership and Education in 

Neurodevelopmental Disabilities (LEND) trainee programs and the University Centers of 

Excellence in Developmental Disabilities (UCEDD) trainee programs to expand the number of 

pre-service trainees in education, human services, and allied health fields, and include a focus on 

instruction in high expectations for children and youth with ID. Trainees should become 

knowledgeable of predictors of postschool success and should learn about and meet selfadvocates and families experiencing positive outcomes. Trainees should also receive 

information about self-determination, supported decision-making, and family support. 

Recommendation #4: Coordinate grant priorities across the U.S. Departments of 

Education, Health and Human Services, and Labor to ensure a focus on the provision of 

information to families about high expectations for children with intellectual disabilities, 

self-determination, supported decision-making, and family support. 

Develop a cross-agency task force to coordinate priorities and language for both formula 

and competitive grants that address children and youth with ID and their families. The team 

would identify grants and create language to support high expectations, as well as the 

development of self-determination skills and supported decision-making. Such grants would 

include Section 619 and Parts B, C, and D of IDEA; Parent Training and Information Centers; 

Community Parent Resource Centers; Family-to-Family Health Centers; Family Respite grants; 

24
 
 

 

 

 

 

 

 


 

Statewide Family Network programs; home visiting programs; and other grants identified by the 

task force. 

Recommendation #5: Update the IDEA Parent Involvement Measures (Indicator 8) to 

track meaningful engagement of parents/families of students with disabilities as full 

partners in their children’s progress to positive postschool outcomes. Also, ensure a means 

to measure parent/family awareness of the predictors of postschool success, and the role of 

the local education agency (LEA) in promoting the same. 

While traditional models of parent engagement in school currently emphasize the 

parents’ roles in reinforcing classroom learning, many family advocates have called for a shift in 

focus toward the school supporting families by working toward shared goals and aspirations for 

their children (Pekel et al., 2015). 

Recommendation #6: Work with cross-agency partners, particularly within the U.S. 

Department of Health and Human Services, to expand the data collection of national 

surveys to include items about services received by children and youth with intellectual 

disabilities and their families. 

In both the National Health Interview Survey (NHIS) and the American Community 

Survey (ACS), include questions that ask about intellectual disabilities, developmental 

disabilities, and autism spectrum disorder (ASD), and allow for determination of the prevalence 

of these conditions. Also include questions about access to services and supports for people with 

ID and their families, support needs, and family caregiver needs. 

Recommendation #7: Charge the National Institute on Disability, Independent Living, and 

Rehabilitation Research (NIDILRR) under the Rehabilitation Act reauthorization in 2014, 

with assessing family needs and including investigation of family support models in their 

field-initiated competitions. 

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In keeping with NIDILRR’s mission as stated in the 2014 Workforce Innovation and 

Opportunity Act (WIOA), which included a reauthorization of the Rehabilitation Act, solicit 

research about how to best develop information and instruction for family members related to 

promoting high expectations for their children and youth with ID, and how to develop family 

skills to encourage self-determination behaviors and abilities in their children. Also, include in 

the charge to NIDILRR a call for research efforts to determine how to support adult siblings of 

individuals with ID, how to develop strong natural supports in communities, how to support 

parents who have ID, how and when it is most effective to provide families with information 

about high expectations for their children with ID, and what procedures are most effective in 

providing family members with skills and knowledge to support the development of selfdetermination in their children. 

Recommendation #8: Charge the U.S. Departments of Education, Health and Human 

Services, and Labor with working collaboratively with institutions of higher education and 

professional organizations to establish competencies for family support specialists and 

family navigators. 

Working with representatives from higher education and accrediting organizations in 

education, health care, allied health, social work, and other human services professions, examine 

and expand the competencies of the Community Health Worker model to address family support 

needs, as well as high expectations and self-determination for people with ID. 

Recommendation #9: In the President’s annual funding, make funding Title II of the 

Developmental Disabilities Assistance and Bill of Rights Act of 2000 a priority. 

Title II of the DD Act, which focuses on family support, has never been funded. The 

findings in the 2000 Act clearly state the need for family support and for information to help 

families raise their children with ID and/or DD to be included in society. The Act also expresses 

the need for society to provide people with ID and/or DD with the access and resources 

necessary to live as full citizens. The lack of funding has limited states’ ability to participate in 

systems change activities to provide such family-centered support. The executive branch should 

26
 
 

 

 

 

 

 

 

 

 

 


 

include funding of Title II in its next proposed budget, and should advocate with Congress for 

the inclusion of funding for FY 2018. 

Recommendation #10: Expand and improve access to multiple types of family intervention. 

Although there is a need for more inclusive research on the effectiveness of programs and 

practices for supporting families, the research that has been conducted to date is promising 

(Reynolds et al., 2015). A number of studies have found that access to the government 

intervention of home and financial support allows for better access to services for individuals 

with ID and their families. Families have reported fewer out-of-pocket caregiving costs and 

fewer unmet service needs (Cadwell, 2006; Caldwell & Heller, 2007). Caregivers with access to 

consumer-directed services also reported that they and their loved ones were more active in the 

community and had better access to health care, and that the individual with ID had a higher 

likelihood of remaining at home (Caldwell, 2006). 

Evaluations of government care-coordination programs have found benefits to the 

individual with ID in terms of increased community participation, and benefits to families, 

including feeling better able to plan for the future and experiencing greater service access 

(Bigby, Ozanne, and Gorden, 2002; Bigby & Ozanne, 2004). 

The small-group education-and-training and social-support-and-counseling programs 

have also shown themselves to be beneficial in terms of increasing family members’ confidence, 

social connectedness, and knowledge of service options (Botsford & Rule, 2004; Smith, Majeski, 

& McClenny, 1996). 

Although more research and knowledge is needed, programs currently available to some 

families are proving beneficial in helping them meet their needs and enabling them to support 

greater community inclusion. These programs, which include psychosocial support, education, 

home and financial support, and care coordination, should be expanded through targeted 

budgeting within the Department of Health and Human Services to serve more families. 

27
 
 

 

 

 

 

 

 

 

 

 


 

Within the Department of Education, this recommendation includes exploring and 

funding updated school-family engagement models for parents of students with disabilities, 

focusing on more effectively engaging with the family and partnering on a shared path to reach 

positive postschool outcomes. 

Recommendation #11: Continue and expand inclusive research on recommended practices 

in family supports, with a particular focus on non-majority racial, ethnicity, partner 

combination, and cultural families. 

Although there is evidence in the literature that family supports are effective, there is still 

a lack of knowledge as to how best to reach all families, what interventions work best for whom, 

and when those interventions should be implemented. Like all families, those with a member 

with an intellectual disability are diverse and complex systems affected by culture, economics, 

and structure, among other things. As Fujiura (2014) states, “There is no prototypical family 

with disabilities” (p. 13). However, much of the research on support services for individuals 

with ID and their families has been conducted by Caucasian researchers and has targeted 

Caucasian, middle-class families in which the mother is the primary caregiver (Reynolds et al., 

2015). Access to programs needs to be ensured across all types of families, including those of 

racial, gender, sexual, and linguistic minorities as well as families in which a father or sibling is 

the primary caregiver. Evaluation of the diversity in family needs and the effectiveness of 

interventions across all families will help increase access to and improve the effectiveness of 

programs. 

Recommendation #12: Ensure that federally funded and supported programs for children, 

youth, and adults with intellectual disabilities engage families early, often, and effectively. 

Families begin to form their expectations for what life can look like for their child early, 

and often have to construct a picture of what their loved one’s adult life may look like without 

access to or knowledge of other adults with ID. It can be highly beneficial for service providers 

to reach out to connect with the families of young children with ID, sharing with them 

knowledge about self-determination, choice, control, interdependence, and access to the 

28
 
 

 

 

 

 

 

 

 

 


 

community as an adult. Such engagement can help parents and mentors, among others, set high 

expectations for children’s futures. The larger focus should connect communities of mentors 

who have ID, including youth and young adults. 

Accessing and navigating needed educational and medical systems can be complex and 

difficult. Engaging families early in a way that is linguistically and culturally appropriate, and 

connecting them with other parents who know how to navigate systems, may help not only to 

improve service access and decrease family stress but also to increase families’ social support 

networks. Increasing children’s and adults’ access to and awareness of role models with ID, 

whether personally or in the media, may also help people, regardless of ability, see new 

possibilities. More frequent engagement with parents may also help improve overall relations 

between a family and service providers who otherwise tend only to interact at times of crisis. 

Both family support and service accessibility influence opportunities for the person with ID to 

have control over their life and to be socially and economically engaged in their community in a 

meaningful way. 

The priorities and procedures of federally funded early intervention, early childhood 

programs, health care services, and other federally funded systems should be examined and 

evaluated for opportunities to expand high-expectations engagement with families from the point 

of earliest diagnosis or identification of disability. Executive branch agencies that fund services 

for families (e.g., the Part C program of IDEA) or directly provide funding for programs (e.g., 

the Administration for Children and Families Early Head Start program) should provide 

guidance to managers and personnel about ensuring early conversations about the possible 

positive outcomes for children with ID. 

Executive branch agencies should also explore the use of technology and social media to 

develop networks of families to provide information about positive outcomes to new parents of 

children with intellectual and developmental disabilities. These networks should be encouraged 

to create mentorship relationships between families with a new member with ID and families 

who can be role models and supports. 

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Recommendation #13: Develop family supports from sources other than state-level 

developmental disabilities agencies. 

Regardless of ability or disability, all families are members of the community, and 

community connection contributes to each individual’s overall quality of life. When people with 

disabilities and their family members understand and use resources used by all community 

members, not just those with disabilities, they may have a heightened sense of community 

connection. All families need access to social support, recreation, and physical resources. 

Determining where and how those resources are provided in ways that have nothing specific to 

do with disability, and then helping families with disabilities connect with those resources3

3 A good example of this type of support is the Department of Labor Job Center network. This network is designed for all 

citizens, including individuals with disabilities. Another federally funded and administered program that provides support to 

families with and without disabilities is Head Start. Other executive branch programs that directly serve citizens across the 

nation should be designed to include people with disabilities. A systematic examination of general family support programs, 

such as the Maternal, Infant, and Early Childhood Home Visiting Program, should be conducted and include the disability and 

family support components. 

, may 

benefit the individual with ID, their family, and the entire community. 

Increased presence of families with disabilities in the community may also contribute to 

changing community attitudes toward disabilities (Reynolds et al., 2015). The Americans with 

Disabilities Act not only requires that a program, service, or activity, when viewed in its entirety, 

is readily accessible to and usable by people with disabilities but also that reasonable 

modifications be provided to ensure meaningful access to programs and services. This could 

include ensuring that programs and services are cognitively accessible. 

30
 
 

 

 

 

	 

	 

	 

	 


 


 

	 

	 

	 

	 


 

Focus Area 2: Education Policies 

Overview and Background: 

The 1975 passage of the Education for All Handicapped Children Act (EAHCA)—now 

known as the Individuals with Disabilities Education Act (IDEA)—established a framework to 

support all children with disabilities. EAHCA included eight key principles and provisions: 

•	 that all students are entitled to a free appropriate public education (FAPE); 

•	 that all children referred for eligibility determination will receive an unbiased 

multidisciplinary evaluation to determine eligibility for special education and related 

services; 

•	 that all children found eligible for special education and related services have the right to 

an individual education plan (IEP); 

•	 that all children will receive their services and supports in the least restrictive 

environment (LRE)—that is, the educational setting as much like the typical one
 

provided to children without disabilities as possible;
 

•	 child find—that is, that the responsibility lies with states and local school districts to 

actively identify children in need of special education and related services; 

•	 that there be parent participation in the development of their children’s services and in the 

guidance of special education and related services; 

•	 that families have a right to due process—that is, to challenge their child’s school if they 

believe their child is not receiving a free appropriate public education or is not receiving 

the services and supports determined in their child’s IEP; and 

•	 zero reject—that all children with disabilities are to be provided an education, with no 

child deemed too disabled to be educated. 

The principles and provisions were a great advancement and created a framework for all 

children with disabilities to be included in general education settings in public schools. 

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In addition to the concepts of no reject and least restrictive environment, the 

Rehabilitation Act of 1973, as amended, prohibits discrimination on the basis of disability by any 

entity that receives federal funding. All states and virtually all school districts receive federal 

funds through the Elementary and Secondary Education Act (ESEA) of 1965 for the purpose of 

enhancing education for children living in poverty. States and local school districts also receive 

federal funding for other purposes, such as USDA funds to provide free and reduced meals to 

eligible students, and funds for professional development under Title II of ESEA. 

Likewise, Title II of the Americans with Disabilities Act prohibits discrimination against 

people with disabilities where services are offered by state and local governments, including the 

provision of public education.4 

4 While most challenges to denial of access to general education in terms of instruction and/or placement have been based on the 

least restrictive environment provision of IDEA, some recent challenges have used Title II of the ADA. The most noteworthy 

example is the U.S. Department of Justice finding in July 2015 that Georgia systematically discriminated against students with 

disabilities by placing them in restrictive settings and denying them access to the general education curriculum. 

With the passage of the No Child Left Behind (NCLB) law in 2001, students with 

disabilities were intimately woven into the accountability process of public schools. As part of 

NCLB, states were required to ensure that all students would successfully meet academic 

standards by 2014, including students with disabilities, and those with the most significant 

cognitive disabilities—a category established by NCLB composed mostly of children with ID. 

While this goal proved untenable, the inclusion of students with disabilities in school 

accountability programs created a shift in how these young people were viewed by school 

leaders. Instead of seeing children with disabilities as a group separate from the general student 

population, school leaders were required to consider the students’ academic instructional needs 

and how they could be provided supports in order to successfully meet academic standards. 

While significant effort has been dedicated to increasing the academic achievement of children 

and youth with disabilities, assessment results and least restrictive-environment data indicate we 

have not yet fully achieved this outcome. 

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For students with disabilities, there were two important outcomes of NCLB. One was 

that for the first time, all school personnel, family members, and communities could see how 

well students with disabilities as a group did on state academic standards, including such 

measures as high school graduation rates. The second important outcome was that, because 

students with disabilities were included in the accountability process, they were taught the 

content of the general curriculum and academically assessed on that content instead of being 

taught to lower standards or receiving instruction not tied to state academic standards. 

The result of NCLB was a significant increase in the academic achievement and high 

school graduation rate of students with disabilities. Between 2001 and 2013, the high school 

graduation rate for all students with disabilities increased from 47 to 62 percent. While still 

lagging significantly behind the over-80 percent rate of high school graduation for the general 

student population, this increase meant that many students with disabilities had additional 

options for postsecondary education and employment (Butterworth et al., 2014; Grigal et al., 

2015). 

Though the 15 percent increase in high school graduation for students with disabilities is 

generally good news, it must be noted that the same graduation rate increase did not occur for 

youth with ID and the most significant disabilities. Carter et al. (2011) found that while there 

has been some increase in the number of youth with intellectual and other significant disabilities 

graduating from high school and obtaining competitive integrated employment, these better 

outcomes are largely the result of family engagement, IEP goals that include work-based 

experiences, and the availability of transportation. 

Shogren and Plotner (2012) found similar results when they examined longitudinal 

outcomes for youth with intellectual and other significant disabilities. They found that this group 

of youth rarely had goals for postsecondary education or competitive integrated work 

experiences. In addition, they found that students with autism and intellectual disabilities were 

rarely involved in their transition goal planning. The findings of Carter et al. (2011) and Shogren 

and Plotner (2012) indicate: 1) more limited education and employment outcomes for youth with 

ID, and 2) evidence of continued low expectations for these youth. 

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With the passage of the Every Student Succeeds Act (ESSA) of 2015, children and youth 

with disabilities continue to be included in the accountability systems of all public schools. 

ESSA clearly states that students with disabilities must have access to the general education 

curriculum that all students have access to and that they must be given the opportunities to 

graduate from high school with a regular diploma. This most recent general education law 

emphasizes that children and youth with disabilities are the responsibility of all educators in a 

school district and that they must be afforded the supports necessary to be able to achieve the 

best possible academic outcomes. 

Barriers and Possible Solutions 

The Individuals with Disabilities Education Act (IDEA) solidified the right to an 

education for all children and youth with disabilities, as clarified by the court cases of the early 

1970s. It also established standards for education provided by states and local school districts. 

Congress, however, did not provide the full amount of funding promised to support the services 

and resources necessary to provide free appropriate public education for all, including students 

with ID. 

However, a side effect of IDEA and its thirteen eligibility categories was that groups of 

children with specific types of disabilities began to be separated into programs and different 

settings. During the first two decades of IDEA’s implementation, students were often segregated 

into settings serving those with health impairments, learning disabilities, and intellectual 

disabilities (often subdivided into “levels” such as mild, moderate, and severe) [Bowe, 2007]. 

To accommodate this type of segregation, institutions of higher education established 

departments and majors to prepare teachers to work with these separate categories of students in 

segregated settings. Students with ID tended to be grouped together, despite often needing 

significantly different approaches to instruction and benefiting from instruction in general 

education settings (Turnbull et al., 2006). Contrary to this placement approach, emerging 

evidence showed that most students demonstrated higher academic achievement when they were 

34
 
 

 

 

 

	 

	 

	 

	 


 

included in classes that taught the general education curriculum and when they were with 

students who did not have disabilities (Bowe, 2007). 

Yet even today, students with ID, unlike students with other types of disabilities, remain 

far less likely to receive their curriculum instruction in general education placements. 

Morningstar, Kurth, & Johnson (2015) found that children and youth with ID were nine times 

more likely than those with other disabilities to be found in highly restrictive settings. 

This segregation of students with ID is a significant problem. In self-contained 

classroom settings students have fewer opportunities to respond to instruction and social 

interactions, they are more likely to be passive in their instructional and social engagement, the 

quality of instruction is likely to be less robust than in the general education setting, and there are 

more distractions (Quirk, 2016). 

The findings of comprehensive education projects such as the Schoolwide Integrated 

Framework for Transformation (SWIFT) indicate that specific strategies for inclusion of students 

with ID will result both in increased academic outcomes and social opportunities, and in the 

development of natural support networks (Sailor et al., 2015). 

The work of the SWIFT project has found that the following educational strategies will 

result in better outcomes for students with disabilities, including those with ID: 

•	 provision of services that meet student needs in general education settings; 

•	 making multi-tiered systems of support available to all students at the intensity of their 

needs in the general education setting; 

•	 focusing on providing students with intellectual disabilities educational services and 

supports at the intensity of service they need; and 

•	 having all educators begin with the assumption that all students can benefit from and 

learn the general education curriculum (Quirk, 2016). 

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As stated, IDEA was a significant advancement in access to the school setting for 

students with disabilities. Yet, as Kleinert et al. (2015) found, as recently as 2011, only 7 percent 

of students with the most significant cognitive disabilities were being educated in general 

education settings. 

A critical complication has resulted from the use of separate settings to serve children 

with disabilities, rather than creating and using a continuum of intensity of services and supports. 

That unintended consequence is the disproportionate assignment of students of color to more 

restrictive educational settings (Losen et al., 2014). In the U.S. Department of Education’s 2016 

analysis of disproportionality, it was determined that over 8,000 school districts (more than 60 

percent nationwide) had over-identified students of color in a disability category, assigned 

students of color to more restrictive settings, or used disciplinary measures more frequently than 

with white students. These practices segregate students of color and reduce their opportunities 

for access to the general curriculum, as well as opportunities to learn from their peers. 

Shifting the identification of need for special education services and supports to be based 

on a child’s academic and social functioning, and providing services in inclusive settings, can 

address this disproportionate categorization of students. Using an inclusive model of educating 

students with disabilities will also reduce the segregation of students of color with disabilities 

that occurs because of the high rate of restrictive placements. 

To build on the strengths of the federal policies found in IDEA, the 1973 Rehabilitation 

Act, as amended, Title II of the ADA, and the Elementary and Secondary Education Act 

(ESEA), PCPID makes the following recommendations. 

Recommendations: Education Policies 

Recommendation #14: Integrate the expected outcomes of ESSA and IDEA. 

The 2015 authorization of the Every Student Succeeds Act (ESSA) continues the 

requirement that students with disabilities be included in state accountability systems and that 

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data about their academic progress be publicly shared. In addition, ESSA increases the 

expectation that students with disabilities are students first, mentioning them as such over 100 

times in the new law. To truly integrate the expected outcomes of ESSA and IDEA, the 

interpretation of an “appropriate” education for a student with a disability should be the expected 

educational outcome as described in ESSA: “a fair, equitable, high quality education to close the 

achievement gap” for all subgroups of students. 

To continue the progress made in increasing expectations for students with disabilities, 

including those with ID, the outcome measures that states and local school districts must report 

should be integrated to focus on academic achievement, postsecondary education participation, 

and obtaining employment. This also means that the Results Drive Accountability process, 

focusing on outcomes rather than procedures, spearheaded by the Office of Special Education 

and Rehabilitation Services (OSERS) of the U.S. Department of Education must include students 

with the most significant disabilities (Delisle & Yudin, 2014). 

In addition, Indicator 6 of IDEA, the least restrictive environment indicator, should be 

refined to ensure that families and community members, in addition to school leaders and 

educators as members of the IEP team determine what quality of inclusive experience a student 

is receiving, including the extent to which they are receiving high-quality instruction in the 

general education curriculum. 

Recommendation #15: Promote the use of universal design for learning in all school 

districts. 

Using a technical assistance model and guidance for the use of state administrative setaside funds for both IDEA and Title I of ESSA, the U.S. Department of Education should 

develop technical assistance centers that will promote the use of universal design of learning 

(UDL), as defined in the Higher Education Opportunity Act (HEOA), in all schools. This 

technical assistance should increase student access to the general curriculum and ensure the 

student is able to be educated in the least restrictive environment with the goal being to provide 

education in the most inclusive environment. 

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Recommendation #16: Pre-service teacher preparation for all teachers should include 

instruction in disabilities, inclusion, and high expectations for children with disabilities. 

Working jointly with accrediting organizations and institutions of higher education, the 

U.S. Department of Education should set professional standards for all educators, including 

school leaders, to be knowledgeable about the evidence-based practices of high-quality inclusive 

education and instruction for students with disabilities and to ensure that educators understand 

predictors of postschool success. A model such as that outlined by the Collaboration for 

Effective Educator Development, Accountability, and Reform (CEEDAR) would be a good 

place to start to incorporate evidence-based strategies into preparing educators to work with 

students of all abilities. Teacher and school leader preparation programs that create high-quality 

educators prepared to teach with the attitude of high expectations for all students and possessing 

the skills to teach all students will create opportunities for children and youth with disabilities to 

achieve academic excellence. 

Recommendation #17: The U.S. Department of Education should create a competitive 

grant program to provide incentives for school districts to increase the use of inclusive 

models of service for students with disabilities. 

Using discretionary funds, the U.S. Department of Education should continue to build on 

the work of the SWIFT Schools project and conduct a competitive grant program that would 

reward local school districts for increasing the use of evidence-based inclusive models of serving 

children with disabilities; decreasing or eliminating segregated, self-contained settings; and 

decreasing or eliminating out-of-district placements of students with disabilities. The program 

should be operated jointly by the Office of Special Education and Rehabilitation Services 

(OSERS) and the Office of Elementary and Secondary Education (OESE). This effort should 

include a component to track and analyze postschool outcomes for students with disabilities, 

including those with ID, for at least five years after leaving their preK–12/IDEA schooling. 

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Recommendation #18: Combine ESSA and IDEA funds to promote the offering of multitiered systems of support in all schools. 

The U.S. Department of Education should offer guidance to states and local school 

districts on how to braid together funding from Title I and Title II of ESSA with Section 619 and 

Part B of IDEA to create comprehensive, multi-tiered systems of academic and behavioral 

support for all students. States and schools should be supported to scale up multi-tiered systems 

of support with fidelity and to expand those systems to address all tiers, with the focus on 

schools with poorest postschool outcomes for students with the most significant disabilities, 

including those with ID. 

Recommendation #19: Provide instruction for school board members, superintendents, 

building principals, and other school leaders about the effectiveness of high-quality, 

inclusive education instruction at improving outcomes for all children, including those with 

intellectual disabilities. 

In combination with private philanthropic foundations, the U.S. Department of Education 

should establish a set of regional institutes for school leaders to provide them with knowledge 

and skills related to the implementation of inclusive, high-quality instruction settings for all 

students, including those with ID. The institutes should be operated collaboratively by OSERS 

and OESE. 

Recommendation #20: Coordinate all the U.S. Department of Education grants (formula 

and competitive) to include inclusive education as the instructional model for students with 

disabilities. 

A task force composed of representatives from across all offices of the U.S. Department 

of Education, youth with intellectual and other disabilities, family members of children with 

intellectual disabilities, and researchers should identify all formula and competitive grants and 

create language to be used across all grant applications to promote the implementation of 

inclusive, high-quality instruction models to educate all students, including those with ID. 

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Additionally, all research funded by the Institute of Education Science should include a priority 

for studies conducted in inclusive classroom settings, particularly if the research subjects are 

students with disabilities or focus on special education instruction and personnel. 

Recommendation #21: The U.S. Department of Education should issue guidance that 

directs states and local school districts to purchase equipment and curricula that is 

universally designed and accessible for all students, including those with intellectual 

disabilities. 

In addition to such guidance, the U.S. Department of Education should establish a 

competitive grant program, available to states, local school districts, and non-profit 

organizations, to develop and disseminate technology and curricula that is accessible for all 

students. (See the PCPID 2015 Report to the President, Leveling the Playing Field: Improving 

Technology Access and Design for People with Intellectual Disabilities) 

Recommendation #22: The U.S. Department of Education should develop a significant 

guidance document expanding upon the November 16, 2015, FAPE document. 

The new guidance should outline the need to focus on high expectations for students with 

ID, including the provision of FAPE and access to the general curriculum. The expanded 

guidance should provide analysis and implementation strategies for high expectations for 

children and youth with ID and for postsecondary education and employment opportunities. 

Recommendation #23: Ensure that all personnel development grants from the U.S. 

Department of Education include provisions to instruct new teachers and related service 

providers in high expectations for children with disabilities and the evidence base for 

inclusive education beginning in early intervention and extending through transition out of 

the preK–12 system. 

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The U.S. Department of Education should include in all personnel preparation 

competitive grants the requirement that personnel preparation programs include evidence-based 

knowledge regarding the use of inclusive schooling models for students of all ages. 

Recommendation #24: Advocate with Congress to provide full funding for IDEA with the 

requirement that states and local educational authorities provide services for children and 

youth with disabilities, using inclusive models of instruction. 

Work with Congress to secure increased funding, up to the level promised by Congress 

when it passed IDEA in 1975. The President’s budget should include this funding as a priority 

each year of the administration. All school districts should receive 75 percent of any additional 

funding provided by Congress. The remaining 25 percent should be used for competitive grants 

to states and local school districts both to implement an inclusive, high-quality instruction model 

of education for all students and to reward districts that use such a model and show increased 

academic outcomes for students with disabilities, including those with ID. 

Recommendation #25: Increase steps to ensure that the U.S. Department of Education’s 

Civil Rights Data Collection (CRDC) is completed by all local school districts. 

The CRDC has proven to be a powerful tool for school personnel, advocates, and families 

when that data has been reported by districts. However, significant numbers of local school 

districts did not report data in either the 2011 or 2013 CRDC. The 2016 CRDC report showed 

increases in the data reported by schools; however, there were still significant gaps in data 

reporting. The U.S. Department of Education should continue to implement incentives for 

reporting accurate data and sanctions for not reporting data. 

Recommendation #26: The U.S. Department of Education should establish requirements 

for effective use of ESSA Title II professional development funds that focus on evidencebased practices that support inclusion, high academic outcomes, and successful transitions 

for students with disabilities. 

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The U.S. Department of Education should issue guidance on the use of Title II funds 

using the criteria of evidence-based professional development and providing an additional 5 

percent funding if professional development results in an increase in use of high-quality, 

inclusive education models and improved academic outcomes for students with disabilities, 

including those with ID. 

Recommendation #27: The U.S. Department of Education should convene a blue-ribbon 

panel to study the impact of the IDEA requirement to provide a “continuum of services,” 

examining the requirement and its impact on student placement. 

There is evidence to suggest that policy makers at the state and local levels interpret 

current regulations concerning the continuum of services as a requirement to provide segregated 

schools, segregated classrooms, and out-of-district placement options for students. This 

interpretation of “continuum of services” is in direct conflict with the original intent of the 

EAHCA and, subsequently, the integration mandate of the ADA. Following the work of the 

blue-ribbon panel, the U.S. Department of Education should issue new regulations on the 

continuum of services based on the panel’s findings. 

Recommendation #28: The U.S. Departments of Education and Justice should jointly issue 

guidance related to the requirements of access to assistive technology and an evidencebased assistive technology evaluation for students with communication and other related 

technology needs as related to the child’s needs to access the least restrictive environment 

and to fulfill the requirements of Title II of the ADA. 

Because of the critical nature of communication in educational attainment, the U.S. 

Department of Education should issue guidance to states and local school districts regarding the 

responsibility of IEP teams to conduct high-quality communications assessments, performed by 

qualified and experienced personnel, and to provide the supports and services needed by students 

with communication needs in order for such students to access the general curriculum and 

communicate effectively with educators and their peers. 

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Recommendation #29: Create a Protection and Advocacy Program to address the rights of 

children and youth who receive special education services through IDEA and services 

through the Rehabilitation Act of 1973, as amended. 

While children and youth with disabilities who receive services through IDEA and their 

families have a right to due process when disagreements occur between the child’s family and a 

school district, there is no legal program to support those families as they navigate the complaint 

system. For adults with ID who receive services from developmental disabilities agencies, there 

has been a protection and advocacy system in place for four decades. A parallel system of legal 

support is needed for children and youth enrolled in the preK-12 system. 

Recommendation #30: Inclusion of Students with the Most Significant Cognitive 

Disabilities Assigned to be Assessed Using the State Alternate Assessment. 

The U.S. Department of Education should issue guidance, and State Educational 

Agencies (SEA) should monitor, issue specific guidance and provide technical assistance, to 

ensure students assigned to be assessed using the state alternate academic achievement standards 

are held to high expectations and have meaningful access to a State’s academic content standards 

for the grade in which the child is enrolled, including default placement in the general education 

classroom. Guidance and technical assistance shall include implementation strategies for high 

expectations including standards-based IEPs, meaningful tracking of postsecondary goals, 

instruction designed to help the child make progress in the enrolled grade general curriculum as 

required in IDEA and ESSA. The U.S. Department of Education guidance and SEA monitoring 

and technical assistance should also ensure that these students’ rights to an education in the least 

restrictive environment are not being violated. IDEA clearly requires that the general education 

classroom must be the first setting considered by the IEP team and more restrictive settings 

should only be considered if the student cannot be satisfactorily educated in the general 

education classroom even with supplementary aids and services. Research has clearly indicated 

that this group of students thrives both academically and socially in inclusive settings; however, 

descriptive research indicates that this group is routinely segregated in separate classes and even 

separate school buildings. Reporting on the percentage of time spent in the general education 

43
 
 


 

classroom for this group of students in each state should be included in the periodic Civil Rights 

Data Collection report issued by the Office of Civil Rights of the U.S. Department of Education. 

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Focus Area 3: Transition 

Overview and Background: 

Transitions for children and youth with intellectual disabilities occur at numerous points 

in the first two decades of their lives. Transition includes from place of birth to home, from 

home to early intervention programs, from early intervention programs to preschool disability 

programs, from preschool disability programs to K–12 education programs, and from K–12 

education programs to postsecondary education and, ultimately, competitive integrated 

employment. 

Along the way, there may be many other transitions that affect outcomes, just as they 

would for any child or youth, regardless of ability: family relocations, changes in family 

structure, changes in family economic well-being, and many other events. 

While all of these transitions are important to the development and outcomes of children 

with ID, this portion of the Report focuses on the transition of youth with ID out of the preK–12 

education system. This transition period typically spans from age 14 through the end of their 

eligibility for IDEA services, which can be as late as their twenty-second birthday in most states. 

A student’s IEP can include such services as assessment of employment interests, work-based 

experiences, and job shadowing. This is a critical transition for the young person with an 

intellectual disability, as well as for their family—a transition that can launch a young person 

with ID into an inclusive setting or segregate this individual from his or her peers without 

disabilities. 

The two examples from Oregon and Rhode Island highlighted in the introduction to this 

Report illustrate how transition activities that assume low levels of ability and have low 

expectations of youth with ID result in their beginning adult life in segregated settings, lacking 

the opportunity to participate in postsecondary education, and having limited, segregated options 

for employment. 

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In contrast, David Test and his colleagues (2009) found that if a young person with an 

intellectual or developmental disability has one work-based learning experience in high school, 

the young person’s chances of becoming employed in a competitive integrated setting double. If 

the young person has two work-based learning experiences, their likelihood of being employed 

in a competitive integrated setting is five times that of a young person with ID who has no workbased experiences. 

This early adult transition for youth with ID involves at least three key areas of their 

lives: postsecondary education, community living, and employment. Each of these sectors is 

discussed below, and recommendations are offered to enhance the inclusion of youth with 

disabilities in the ebb and flow of typical community life. References have been geared toward 

career exploration, career development, and career pathways for youth with ID to emphasize the 

high expectation of paving the way for long-term careers for people with ID. 

Postsecondary Education 

Postsecondary education is a formative time of life for many young people. Not only is it 

a chance to gain new, focused skills and knowledge; it is also the opportunity to create 

relationships that will have long-term impacts on a person’s life. Postsecondary education is also 

a time when individuals have the opportunity to observe and interact with people different than 

themselves. This exposes young people to different cultures, behaviors, and beliefs. 

Postsecondary education also allows for experiences that may not have been available in a young 

person’s high school or the place where they grew up. Finally, postsecondary education is a time 

to both explore and select who one wants to become and to try new roles and ways of living. 

The benefits of postsecondary education are extensive: better health outcomes, greater 

reported happiness, higher rates of participation in community, and longer life (McMahon, 

2009). Additionally, those who participate in postsecondary education are more likely to be 

employed. On average they earn at least 50 percent more than their peers with a high school 

degree and are more likely to have health insurance (Baum & Ma, 2007; Bureau of Labor 

Statistics, 2010; Mischel, Bernstein, & Allegretto, 2007). 

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Postsecondary education for youth 

with ID has been rare. Until the passage of 

the Higher Education Opportunity Act in 

2008, reauthorizing the Higher Education Act 

of 1965, postsecondary education for youth 

with disabilities had never been mentioned in 

federal statute. In a significant change, the 

new version of the law in 2008 not only 

mentioned students with disabilities; it also 

created a program to encourage the 

development of postsecondary education 

programs for youth with ID at institutions of 

higher education. 

Over the past eight years, Congress 

has appropriated funds for, and the U.S. 

Department of Education has awarded, fiftytwo grants to institutions of higher education 

to create postsecondary education programs 

for students with disabilities. 

The Model Comprehensive Transition and 

Postsecondary Programs for Students with 

Intellectual Disabilities (TPSID) provides 

grants to institutions of higher education or 

consortia of institutions of higher education to 

enable them to create or expand high quality, 

inclusive model comprehensive transition and 

postsecondary programs for students with ID. 

Adam Parker Moss 

Adam Moss is a 2015 graduate of the Ohio 

State University Transition Options in 

Postsecondary Settings (TOPS) program. The 

program provides the opportunity for young 

people with intellectual disabilities to continue 

their education on campus in an inclusive 

setting, attending classes with their nondisabled peers, working, and learning selfadvocacy skills. 

Born with an intellectual disability, Adam says 

that he was “blessed to be born with parents 

with high expectations.” 

As a junior in high school, Adam began to ask 

his parents about attending college. He 

especially wanted to attend Ohio State 

University because his parents are alumni. 

Adam was enrolled in TOPS for four years, 

graduating with a concentration in political 

science. One of his professors said of Adam 

that “he is a deeply engaged student who not 

only cares about learning the structures of 

American government but also how citizens 

can become involved.” 

Adam reports that the TOPS program allowed 

him to pursue his dream of attending college 

and at the same time taught him valuable skills 

about work and interacting with others. 

Above, Adam Parker Moss with his mother. Adam 

is 23 and now works 20 hours a week at the Woody 

Hayes Athletic Center at Ohio State University. 

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These programs have resulted in thousands of young people with ID attending postsecondary 

education programs. Preliminary data indicate that participation in these programs results in 

higher rates of employment compared to participants’ same-age peers, as well as yielding social, 

health, and quality-of-life benefits (Grigal et al., 2015). 

There are at least 250 postsecondary programs for people with ID at higher education 

institutions throughout the United States (Hart & Grigal, 2009). But despite this notable increase 

from virtually none prior to 2008, even eight years after the passage of HEOA, a complete 

profile of the programs offered and clear understanding of what variables promote the type of 

positive outcomes for youth with ID (as those typically find among the general population) 

remain unknown. Compared to the general population youth with ID are still only half as likely 

to participate in postsecondary education (Butterworth et al., 2013). 

Significant research related to the effectiveness of postsecondary programs for youth with 

intellectual and developmental disabilities has been conducted during the past decade. This 

research has helped identify key components of programs to support postsecondary students with 

ID. Some such components have to do with the level at which students with ID are integrated in 

course work, social activities, and living arrangements. Other important components are 

availability of coaching, support models, and the academic approach of the programs 

(McEathron et al., 2013). 

Initial outcomes and anecdotal evidence from youth with ID, their family members, and 

higher education personnel indicate that postsecondary education for youth with ID does have 

significant positive outcomes, though more data is needed to determine exactly what type of 

postsecondary programs and experiences yield the most benefits (Ross et al., 2013). 

Nonetheless, it is clear that in order to help people with ID travel a new trajectory to a more 

inclusive life, more opportunities for postsecondary education are needed for this group of young 

people. 

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Recommendations: Postsecondary Education 

Recommendation #31: The U.S. Department of Education should begin a large-scale 

comparative study, comparable to the PROMISE controlled randomized trial study, to 

determine the most effective models and the key variables of postsecondary education 

programming for youth with intellectual disabilities. 

This study should be conducted for two purposes: 1) to determine the program structures 

that contribute to positive outcomes for youth with ID, and 2) to track students with ID for ten 

years and compare outcomes of those who attend postsecondary education programs with 

outcomes of those who do not. 

Recommendation #32: The U.S. Department of Education, in collaboration with 

stakeholders, including youth with disabilities, family members, researchers, 

philanthropists and foundation personnel, and higher education personnel and accreditors, 

should create a task force to establish standards for high-quality inclusive postsecondary 

education programs. 

The variation in program models and quality is vast among the fifty-two congressionally 

funded postsecondary programs. As reported in the most recent annual report on these programs, 

approximately half the courses in which students are enrolled are segregated and specialized. 

Other program variations have to do with campus housing, peer mentoring, specialized 

orientation programs, family participation, cost and other program components. This task force 

should establish high-quality guidelines for inclusive postsecondary education programs and 

encourage higher education accrediting agencies to use the standards when reviewing colleges 

and universities for overall accreditation. 

Recommendation #33: The U.S. Department of Education should create a state-level 

competitive grant program to encourage the development of postsecondary education 

programming for youth with intellectual disabilities within all state university systems. 

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State public colleges and universities were established to provide their citizens with 

advanced education that would improve the standard of living for the individual, their family, 

and the state. State higher education systems should be open to all citizens, including those with 

ID. This competitive grant program would assist states in establishing programs for students 

with ID to gain the same experiences and opportunities at their state colleges and universities as 

their peers without disabilities. 

Recommendation #34: The U.S. Department of Education should create a competitive 

grant to establish technical assistance centers to collect and disseminate information about 

postsecondary education opportunities for youth with intellectual disabilities. 

These technical assistance centers should collect information about the postsecondary 

education options from around the country for students with ID, and publish the information in 

formats that are easily accessible to students and families. The technical assistance centers 

should also provide students and family members with qualitative information about 

postsecondary education programs and outcomes. The technical assistance centers should also 

provide information about program costs and availability of federal student loans, as well as state 

and institution student loans. 

Recommendation #35: The U.S. Department of Education should create a competitive 

grant to establish technical assistance centers to assist colleges and universities with 

creating programs for youth with intellectual disabilities and to support colleges and 

universities as they serve this population. 

These technical assistance centers should assist colleges and universities to create highquality inclusive postsecondary programs for students with ID, help staff and faculty to create 

and provide course accommodations for students with ID, and help the colleges and universities 

make their programs and services accessible to students with ID. 

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Recommendation #36: The U.S. Department of Education should work to remove the 

barriers that make it difficult for students with intellectual disabilities and their families to 

secure federal student loans to attend postsecondary education programs. 

The U.S. Department of Education should ensure that information about student loans for 

students with ID is widely available to those students and their families, and that institutions of 

higher education are aware that students with ID are eligible for federal student loans when they 

attend accredited, inclusive postsecondary education programs. 

Community Living 

A second major area of importance for transition-age youth is access to community 

living. This includes such aspects of life as transportation and health care, as well as supports to 

live inclusively in communities with peers and neighbors with and without disabilities. In this 

section we address two of the most critical areas for community living: health care and 

transportation. 

Health Care 

The vast majority of people with ID begin their care with pediatricians or developmental 

pediatricians. In urban areas, many are served through hospitals with a mission to serve children 

with special health care needs. It is clear that the transition to adult health care is much more 

difficult and sometimes impossible for youth with ID as compared with the general population, 

thus continuing their care via pediatricians and health care systems designed for children. Krahn 

et al. (2006) and Peter et al. (2009) noted the difficulty in finding health care providers with 

experience serving adults with ID. Peter et al. (2009) also described the significant need to train 

family physicians and internists in the care of adults with ID. 

Hogg et al. (2001) noted that assisting youth with ID to transition from pediatric health 

care to adult health care can help them become more aware of the changes in their body and their 

health care needs as they age. Such knowledge is not necessarily available in settings that 

primarily care for pediatric patients with ID. 

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Kennedy and Sawyer (2008) found scattered health care services, in many cases through 

subclinical settings that provide excellent services in helping youth with ID to transition to adult 

health care. They note, however, that these are isolated examples and there is “little evidence of 

hospital-wide or regional planning” (p. 408). They, too, urge that more training be conducted 

with adult care providers to enable them to provide adult and aging health care services for 

people with ID. 

A more global but related concern about the health care of people with ID is the overall 

continued high rate of secondary health concerns such as hypertension, diabetes, and obesity 

(Evenhuis et al., 2000; Lollar, 2001). Despite significant investment of funds into addressing the 

health of adults with ID, improvement has not occurred. In 2002, the Surgeon General’s office 

warned that as the education and social supports for people with ID evolve, health care services 

must also evolve. Part of that proposed evolution is to identify people with ID as a medically 

underserved population. This recommendation has been made by the American Academy of 

Developmental Medicine and Dentistry (2013), the American Medical Association (2014), the 

American Dental Association (2014), the American College of Physicians (2014), the American 

Physical Therapy Association (2015), and the American Academy of Pediatric Dentistry (2014). 

Transportation 

To be included in all that life has to offer, people have to get where they are going. 

Mobility is necessary to obtain education, to find and keep a job, to stay healthy, and to fully 

engage in one’s community. For people with intellectual disabilities the transportation gap is 

large. Thirty-one percent of people with disabilities report insufficient transportation compared 

to thirteen percent of the general population (AAPD, 2012). 

There are several reasons for this transportation gap for people with disabilities, including 

a lack of information, knowledge and skills needed to utilize public transportation; fear and 

apprehension among people with ID and their support systems; poor availability of options; and 

cost. 

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Across the government, there are several programs and initiatives that help address these 

key barriers. These include mobility management, a person-centered, holistic approach to 

transportation system design that aims to better connect citizens with existing transportation 

options; travel instruction for people with intellectual disabilities; and technology supports such 

as TravelMate, an app for tablet computers that supports travelers with cognitive disabilities (The 

Arc of Northern Virginia). 

In addition, a growing number of persons with disabilities are using fixed-route public 

transportation service. The Transit Cooperative Research Program (TCRP) Report 163, Strategy 

Guide to Enable and Promote the Use of Fixed-Route Transit by People with Disabilities, found 

that, nationally, ridership by people with disabilities on the fixed-route system compared with 

ADA-mandated paratransit ranges between 1:1 and 5:1 or higher. In other words, between one 

and five or more times as many people with disabilities are riding the fixed-route system as 

compared to the ADA-mandated paratransit system. 

Both accessible, quality health care and accessible, reliable transportation make it 

possible for people with ID to be active, inclusive members of their communities and society as a 

whole. Based on the continued need for quality healthcare and reliable transportation, PCPID 

makes the following recommendations: 

Recommendations: Community Living 

Recommendation #37: The U.S. Department of Health and Human Services should petition 

Congress to designate people with intellectual disabilities as a medically underserved 

population5

5 Members of the President’s Committee agree that the entire disability community should be considered as a medically 

underserved population. However, this Report solely focuses on people with intellectual disabilities and provides an advice to 

the President regarding issues pertaining to intellectual disabilities. 

. 

This designation will funnel additional resources to children and youth with ID and 

increase their health outcomes so their trajectory will continue toward integration in their 

communities rather than toward settings that are clinical in nature. This designation will further 

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support people with ID to be able to advocate for concrete actions to decrease their health 

disparities by improving their overall health, and reducing barriers to their health care. 

Recommendation #38: The Disability and Health Office of the Centers for Disease Control 

and Prevention, in collaboration with the Administration for Community Living, the 

Health Resources and Services Administration, and the Society for Adolescent Health and 

Medicine should establish standards for transitioning youth with intellectual and other 

disabilities to adult health care. 

A task force composed of representatives from each of the agencies named above, along 

with an extensive group of youth and young adults with ID, should draft standards for 

transitioning youth with all types of disabilities, including those with intellectual and 

developmental disabilities, from pediatric health care to adult health care. The task force should 

also offer strategies specifically to address the shortage of adult health care providers for people 

with intellectual and developmental disabilities. 

Recommendation #39: An interagency group composed of the U.S. Departments of 

Education, Labor, and Health and Human Services should work to develop strategies to 

implement the six goals of the 2002 Surgeon General’s Report on “health disparities and 

people with intellectual disabilities”. 

The six goals of the 2002 Surgeon General’s Report are designed to increase the capacity 

of the national health care system to address the health needs of people with ID, to increase the 

knowledge and skills of physicians and allied health professionals regarding care for adults with 

ID, and to ensure that health care services are accessible to those with ID. Implementing the 

strategies suggested by the Surgeon General’s office would greatly increase the likelihood of 

improved health outcomes for adults with ID. 

Recommendation #40: Expand the mobility management project operated by the Federal 

Transit Administration (FTA) to increase the ability of people with intellectual disabilities 

to navigate transportation networks in their communities. 

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In order to support people with ID to expand their use of fixed route transportation 

options, expand the capital expenditures of the FTA to local transportation providers to provide 

instruction to people with ID regarding the options and means for using fixed route 

transportation. This would include increased access to those transportation options while 

increasing the ability for people with ID to use those systems safely and reliably. 

Recommendation #41: In order to address the transportation needs of people with 

intellectual disabilities in communities that are transportation deserts, expand the Section 

5310 program to create additional transportation opportunities. 

In both rural and suburban areas of the country where accessible transportation is absent, 

use the Section 5310 program to expand options and create new strategies to address the 

transportation needs of people with ID. The Section 5310 program provides formula funding to 

states for the purpose of assisting non-profit groups to meet the transportation needs of older 

adults and people with disabilities. 

Employment 

People with ID have one of the lowest rates of participation in the workforce of any 

subgroup in the country, if not the lowest. Their rate is far lower than any group of color and 

lower than almost all subgroups of people with disabilities. As summarized by the Advisory 

Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities 

in their Interim Report (2015), youth with ID are less likely than their peers to graduate from 

high school, less likely to pursue postsecondary education, more likely to participate in 

sheltered-workshops and significantly more likely to be unemployed for much or all of their 

adult lives. 

Research during the past fifteen years has clearly identified the factors that increase the 

likelihood of youth with disabilities securing a job. Work-based experiences in competitive 

integrated employment are the number one factor affecting the likelihood of a person with a 

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disability securing competitive integrated work after they leave school (Carter et al., 2012; 

Luecking & Luecking, 2015; Test et al., 2009). 

Other factors that contribute to the higher likelihood of securing a job after school are 

early connections to vocational rehabilitation services (Luecking & Luecking, 2015; Schall et al., 

2015), instruction and practice in self-determination activities (Berry et al., 2012; Getzel & 

Wehman, 2005), participation in the general education curriculum during high school (Berry et 

al., 2012), and family expectations (Wehman, 2013). 

A number of pilot projects conducted over the past decade have resulted in youth with ID 

achieving jobs in competitive integrated settings at the 60–70 percent level, compared to the 14– 

18 percent level of most adults with ID. Projects such as Partnerships in Employment (PIE) 

sponsored by AIDD (Partnerships in Employment National Transition Systems Change Project, 

2016), Project SEARCH (Schall et al., 2015), Transition Systems Integration Model (Certo et al., 

2009), and the Seamless Transition Model (Luecking & Luecking, 2015) have all been 

successful at increasing the employment outcomes of young adults with ID. 

In addition to strategies cited above for increasing the likelihood of employment after 

preK–12 education, participation in service learning, such as the activities conducted by the 

Corporation for National and Community Service (CNCS), can provide pre-employment skillbuilding to increase workforce participation (Spera et al., 2013). National service experiences 

provide young adults with ID with experiences and skill development similar to that gained 

through paid work in integrated settings. Those who complete a service term for one of the 

CNCS programs are eligible to receive an education award that can fund postsecondary 

education or pay down college debt. In addition, national service members may receive modest 

living allowances during their service terms that can assist with launching young people with 

disabilities into the workforce. While they should not be a substitute for paid work experiences, 

volunteer experiences can lead to employment and, as such, can be a strategy for increasing 

workforce participation for young adults with ID6

. 

6 Two recent publications on the topic of transition from preK-12 education to employment for youth with disabilities are: 1) The 

2020 Federal Youth Transition Plan: A Federal Interagency Strategy, and 2) The 2016 Interim Report from the Advisory 

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Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities (set to be released in September 

2016).

Despite the clear knowledge that has been gained about what factors can be implemented 

to increase the likelihood of employment for young adults with ID, availability of these strategies 

across the country varies greatly (Carter et al., 2009). Policies are needed to support the use of 

the strategies that have been identified through evidence-based research. The following 

recommendations highlight key points from the aforementioned publications (see footnote on 

page 56), and are designed to increase the likelihood of youth with ID securing and retaining 

employment as they transition from preK–12 schooling into adulthood. 

Recommendations: Employment 

Recommendation #42: The U.S. Department of Labor should continue to support States to 

expand their Employment First initiatives7

7 A framework for systems change that is centered on the premise that all citizens, including individuals with significant 

disabilities, are capable of full participation in integrated employment and community living 

. 

As of the writing of this Report, 46 states have initiated Employment First activities 

(APSE, 2016). However, these initiatives vary greatly. The U.S. Department of Labor should 

provide technical assistance to ensure such strategies, as customized employment and supported 

employment, make it possible for people with ID to work in competitive integrated settings. 

Recommendation #43: The U.S. Department of Education should issue guidance that 

encourages schools with transition-age youth with intellectual disabilities to participate in 

work-based learning. 

The work-based learning experiences provided to young people with ID should be in 

integrated settings where they are able to learn and implement job skills. Youth with ID should 

also have the opportunity to experience paid work at competitive wages in an integrated setting. 

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Recommendation #44: The U.S. Department of Education should issue guidance to states 

and local school districts to ensure that secondary and postsecondary career and technical 

education (CTE) programs are accessible to students with disabilities and that such 

students are recruited for CTE programs. 

The U.S. Department of Education, through the issuance of guidance and in the absence 

of reauthorization of the Perkins Career and Technical Education Act, should direct secondary 

public schools and postsecondary programs using federal CTE funds, to develop strategies to 

recruit, enroll, retain, and graduate students with disabilities. Such guidance should include 

strategies for states to develop technical assistance for local school districts and state community 

colleges to serve students with disabilities, including those with ID. The Department should also 

offer guidance to local school districts to promote the inclusion of CTE programming in the IEPs 

of youth with ID, when the program is consistent with the student’s academic and transition 

goals. 

Recommendation #45: The U.S. Department of Education should issue guidance that 

promotes at least one 10-week-minimum, paid, work-based experience in an integrated 

workplace setting. 

As part of their transition plan, students with ID should have at least one work-based 

learning experience in a competitive integrated setting. Students should not be placed in 

subminimum-wage settings for either pre-employment training experiences or work-based 

learning experiences. Based on the interventions used in the “Youth Transition” and the 

“PROMISE” studies a 10-week paid work experience should be made available for all 

transitioning youth with ID. 

Recommendation #46: The U.S. Department of Education should combine the use of IDEA 

Part D funds and ESSA Title II funds to create competitive grants for the purpose of 

developing new teacher and school leader workforce cohorts at the local level 

knowledgeable about strategies for increasing competitive integrated employment among 

students transitioning from preK–12 schooling. 

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These cohorts can be developed through the creation of institutes, seminars, or long-term 

professional development experiences that provide educators with information about program 

models, curricula, and intervention strategies which, based on robust research findings, are likely 

to increase the chances of employment for students with intellectual disabilities. Such institutes 

should have at least the following components: 

•	 examples of the impact of high expectations from teachers, counselors, school leaders, 

and other school personnel on the employment of students with intellectual disabilities; 

•	 information about the impact of work-based learning and experiences in competitive 

integrated employment for students with intellectual disabilities; 

•	 the effect of parent and family member expectations on the employment of students with 

intellectual disabilities; 

•	 education in benefits counseling, to be able to accurately talk with youth with ID and 

their family members about the impact of working on SSI and other benefits; and 

•	 train-the-trainers instruction in each of the above areas to enable cohort participants to 

effectively communicate the information to their school colleagues. 

Recommendation #47: The Rehabilitation Services Administration (RSA) should issue 

guidance to state Vocational Rehabilitation (VR) Services regarding effective strategies for 

collaborating with local school districts to develop transition plans for students with 

intellectual disabilities beginning at age fourteen. 

The Rehabilitation Services Administration should clarify with state VR programs, the 

role of VR counselors in the transition of youth with ID. State agreements, such as the one 

developed by Tennessee, should be implemented to ensure that local schools and VR services 

coordinate the services they provide (Tennessee Interagency Transition Agreement, 2012). 

Recommendation #48: The U.S. Department of Education should update guidance and 

enforcement of IDEA indicators 13 and 14 to promote the path toward competitive 

integrated employment for youth with intellectual disabilities. 

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The U.S. Department of Education’s reporting requirements related to the 

implementation of IDEA include a set of indicators about which local school districts and state 

education agencies must provide outcome data. Indicators 13 and 14 address transition planning 

and activities, and postschool outcomes, for students with disabilities. PCPID recommends that, 

as part of indicator 13, families receive quarterly updates on a student’s progress toward 

achieving postschool outcomes, including participation in work-based learning activities. The 

President’s Committee also recommends that the U.S. Department of Education monitor states 

and their oversight of local school districts regarding annual assessment of postschool outcomes 

for all exiting students, reporting on their postschool outcomes for at least five years. The 

Department should work with states to establish goals for local school districts related to student 

participation in postsecondary education and competitive integrated employment. Local school 

districts not achieving those goals should be provided with support and technical assistance from 

their state education agency. 

Recommendation #49: The U.S. Department of Education should issue guidance to update 

the IEP process to guide teams, including family members, to include goals that are 

outcome-based and inclusive of postsecondary education and competitive integrated 

employment. 

During the transition period of a youth with disabilities, including youth with ID, local 

school districts are required to convene IEP teams annually to review and update IEP transition 

goals, and include postsecondary education and competitive integrated employment goals as 

appropriate for the student. 

The U.S. Department of Education should provide guidance for state education agencies 

and local school districts to ensure the provision of training for IEP team members on the most 

up-to-date evidence-based practices related to achieving postsecondary education and 

competitive integrated employment. Local school districts should be provided with strategies to 

track and report progress toward such goals from the start of transition planning for all students 

with disabilities. Data should be collected and reported by disability category. 

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Focus Area 4: Self-Determination and Supported Decision-Making 

Overview and Background: 

The creation, implementation, and enforcement of policies and practices that will shift the 

trajectory for people with intellectual disabilities toward opportunities for meaningful economic, 

social, educational, and physical connections to their communities are not actions of charity but 

actions driven by a foundational belief that inclusion and control over one’s life are fundamental 

civil and human rights. Marginalized groups have had to fight to remove barriers in order to 

access rights they have been denied. One of the central goals of the disability rights movement is 

to fight against policies, practices, and attitudes that contribute to the oppression and 

marginalization of, and the discrimination against, people with disabilities (Winter, 2003). In 

doing so, the disability rights movement promotes full citizenship and the civil and human rights 

of all people regardless of ability. A person’s right to make their own decisions, set their own 

goals, and pursue those goals is a cornerstone of the United States Constitution and of state 

constitutions. These rights have also been recognized internationally. Article 12 of the United 

Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) states that decisionmaking is a right that is not dependent on disability status and should be legally protected 

(Dinerstine, 2011–2012). 

Decision-making and self-determination are not synonymous, but they are integrally 

related. Decision-making involves the ability to make judgments about which solution or option 

is best in a given situation (Baron & Brown, 1991). Decision-making requires not only skill but 

also opportunities and access to various courses of action. Self-determination describes the 

activity a person takes to control their own life in pursuit of their own goals (Blank & Martinis, 

2015; Shogren et al., in press). It requires that one have opportunities to make decisions in one’s 

life to set those goals, and then the freedom to take action in pursuing those goals. 

For people with disabilities, and particularly for those with ID, policies and practices 

have developed over time that limit or remove their rights to make their own decisions, take 

action toward achieving their own life goals, and thereby take their place as equal citizens. To 

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shift the trajectory for people with ID toward full citizenship, policies and practices must be 

enacted to restore these rights. 

Guardianship as a Barrier to Self-Determination 

The practice of legal guardianship, initially designed as a protection for people with ID, 

can be a barrier to self-determination. In the United States, the denial of rights on the basis of 

gender and race, though still a reality, has long been considered morally wrong (Carey, 2009). 

However, only within the past few decades has this discrimination been questioned in regard to 

individuals with limitations in intellectual functioning. Historically in the United States, access 

to formal care and support was integrally linked to the loss of personal freedom and control. 

Breaking this link has proven to be a difficult process (Carey, 2009). For most citizens, upon the 

legal age of adulthood, access to all civil rights is afforded. Decisions that previously could only 

be made by parents or guardians transfer to the young adult (Miller, 2007). However, if a court 

determines that an individual is cognitively incompetent; those rights are not afforded and 

instead are transferred to a proxy (Miller, 2007). This system is known as guardianship and was 

originally designed to protect specific groups of people, such as those with ID, from harm. 

The automatic granting of guardianship for people with ID can, however, deny 

fundamental rights to self-determination and decision-making on the basis of “intellectual 

incompetence” regardless of the significance of such so-called incompetence in specific matters 

(Carey, 2009; Noll & Trent, 2004). Under guardianship, people are stripped of or denied rights 

to any legal and most personal decision-making (Carey, 2009). In this process a third party, be it 

a family member, friend, or unrelated individual, petitions the court to assume all or some 

decision-making rights on behalf of the individual (Carey, 2009). It is assumed that the proxy 

can and will make better decisions than the individual for whom they are the guardian. 

There can be problems both with the assumption of and the process of guardianship as a 

whole. The belief that a proxy will always make better decisions than a person with intellectual 

disability assumes that decision-making is a static, concrete skill set that one has or does not 

have. Decision-making, however, is a complex process that requires skill, access to information 

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about options and potential consequences, knowledge of available resources, and knowledge of 

social contexts. 

The process by which the policy of guardianship is practiced also can be problematic. No 

federal guidelines exist to unify state practices of guardianship, nor are states required to keep 

data on guardianship rulings (Millar & Renzaglia, 2002). The lack of data collection and recordkeeping makes it difficult to determine, first, how many citizens are not provided their 

fundamental right to self-direction and, second, the consequences of such loss of rights for both 

the person and their community. 

Guardianship itself is not a homogeneous occurrence. There are both different types and 

different degrees of guardianship (Millar & Renzaglia, 2002). One type is guardianship over the 

person, meaning that the person’s guardian controls residential, daily-life, educational, and 

medical decisions. Another type is guardianship over the estate, meaning that the guardian has 

control over financial decisions for the individual (Millar & Renzaglia, 2002). Full guardianship, 

otherwise known as general or plenary guardianship, occurs when the guardian is legally 

authorized to make all decisions for the person. Limited or partial guardianship occurs when the 

guardian is authorized to make some of the person’s decisions (Blank & Martinis, 2015). 

Available data demonstrate that in most cases, when a petition for guardianship of an adult is put 

forward, full guardianship is granted to the proxy (Teaster, Wood, Lawrence, & Schmidt, 2007). 

In 1987, Claude Pepper, Chair of the House of Representatives Select Committee on 

Aging, was examining the issue of abuses in guardianship. In a summary of the committee’s 

work he described guardianship as “the most punitive civil penalty that can be levied against an 

American citizen” (Pepper, 1987, p. 4). By definition, the system denies the individual the right 

to make their own decisions and direct their own life. In the United States, individual states 

control guardianship laws. Many states lack a system to monitor and review guardianship. Once 

guardianship has been established, it can be unclear how the decision is made to determine 

whether an individual continues to require guardianship and, if so, under what circumstances. 

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It is estimated that over 1,250,000 adult citizens in the United States have been deemed 

incompetent and unable to make decisions regarding their own lives (Lisi, Burns, & Lussenden, 

1994). These individuals are not only people with intellectual disabilities; they also include 

older adults deemed incompetent due to age-related declines and individuals with mental illness. 

Even though full guardianship can severely restrict an individual’s legal rights, studies find that 

courts often choose full guardianship over less restrictive alternatives. In 2007, one study found 

that in just fewer than 90 percent of guardianship cases, the proxy was granted full decisionmaking over all aspects of the individual’s life (Teaster, Wood, Lawrence, & Schmidt, 2007). 

People placed in circumstances where they are denied opportunities for selfdetermination, such as in the case of full guardianship, often report feelings of inadequacy, low 

self-worth, and potentially diminished quality of life (Winick, 1995). The practice of 

guardianship continues to be used inappropriately to block community integration despite 

Federal and State laws and Supreme Court holdings, such as the Americans with Disabilities Act, 

the Individuals with Disabilities Education Act, and the Supreme Court 1999 Olmstead Decision 

prohibiting unjustified segregation. Under guardianship a person can be denied the right to 

choose where and with whom they live, the right to get married, the type of employment they 

pursue, the medical services they use, and in many states the right to vote. The practice of 

preventing an adult from exercising, or stripping them of the legal right to make their own 

decisions on the basis of intellectual capacity also sends a message to the larger society that 

people with ID have the legal and social status of children and are not full and equal citizens. 

This may impact societal attitudes that contribute to ongoing discrimination and segregation of 

people with ID. 

Supported Decision-Making 

Certain strategies can enhance the rights and decision-making power of people with ID, 

even if they have a guardian. In some cases, the use of such strategies may make it possible for 

an individual to make their own or participate in the making of decisions about their living 

arrangements, work, health, and finances. Supported decision-making is one such strategy. 

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Supported decision-making is often defined as an individual using a team of trusted 

people (e.g., friends, family members, advocates) to help them understand a situation and the 

choices they have so they may make their own informed decisions to the best of their ability 

(Dinerstein, 2011–2012; Quality Trust, 2013). In a specific situation, supported decision-making 

takes into account the diversity of decisions to be made and can adjust the support a person needs 

depending on the nature of a given decision. 

Although guardianship is still prevalent, supported decision-making is increasingly used 

as an augmentation to guardianship or even an alternative in the United States (Kohn, 

Blumenthal, & Campbell, 2013). The UN Convention on the Rights of Persons with Disabilities 

recognizes supported decision-making as a means to ensure access to human and civil rights for 

persons with disabilities, and several states have passed laws studying and authorizing the use of 

supported decision-making (Blank & Martinis, 2015). Supported decision-making can provide 

individuals with ID the skills to live self-determined lives and to enjoy the rights afforded them 

as humans and as citizens (Kohn et al, 2013). 

Decision-making and self-determination involve both opportunity and teachable skills. 

Young adults who receive instruction to increase self-determination exhibit better employment 

outcomes, increased independence in daily-life activities, and more extensive community 

integration than those who do not (Powers et al., 2012; Shogren et al., in press). Studies have 

indicated a positive relationship between self-determination and quality of life. One such study 

found that young adults with greater self-determination were more likely to want to manage their 

own money, be employed in competitive integrated settings, and live independently (Wehmeyer 

& Schwartz, 1997). Other studies have found that adults who exerted more self-determination 

were more likely to live independently, protect themselves from abuse, and have higher-paying 

jobs (Wehmeyer & Palmer, 2003; Kehemka, Hickson, & Reynolds, 2005). Supported decisionmaking may increase self-determination and have a positive influence on an individual’s quality 

of life. 

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Recommendations: Self-Determination and Supported Decision-Making 

Recommendation #50: The U.S. Department of Health and Human Services (HHS-ACL) 

and the U.S. Department of Justice should monitor and study current guardianship laws in 

order to develop incentives for the adoption and expansion of augmentations and 

alternatives to guardianship, including supported decision-making. 

Guardianship can be a problematic and a potentially abusive practice. More research 

must be conducted to determine the financial, political, and social incentives that maintain the 

system of guardianship. More research will also provide better data on the prevalence of 

guardianship and the monitoring that is or is not in place to protect people with guardians from 

abuse. In order for courts and providers to make informed decisions about guardianship and the 

use of alternatives such as supported decision-making, data regarding the use and outcomes of 

guardianship are necessary. As guardianship can severely limit an individual’s civil rights, 

sound information is necessary for those in the position to determine whether a person is 

assigned a guardian. Research also should be conducted on the potential reduction or 

elimination of guardianship and the impact such a shift may have on those currently under 

guardianship. 

Recommendation #51: The Administration for Community Living (ACL), in collaboration 

with the Administration on Children, Youth, and Families (ACYF), should support the 

development and continued use of systems for sharing information about supported 

decision-making and alternatives to guardianship for individuals with intellectual 

disabilities, as well as for those who are aging. 

As new data and information emerge about best practices in supported decision-making, 

that information must become readily accessible and shared with families, courts, school 

personnel, and service providers. Organizations such as the National Resource Center for 

Supported Decision-Making (NRC-SDM) are leading and coordinating efforts to make supported 

decision-making a recognized alternative or augmentation to guardianship (Blank & Martinis, 

2015). The NRC-SDM is acting as a clearinghouse for information on supported decision66
 
 

 

 

 

 

 

 

 

 


 

making, conducting research on best practices in supported decision-making, and establishing 

services, such as a website for families, self-advocates, and government officials, to share 

information and coordinate efforts in promoting supported decision-making. ACL should 

collaborate with NRC-SDM to ensure that information about supported decision-making is 

widely available. 

Recommendation #52: The Office of Special Education and Rehabilitation Services 

(OSERS) and the Administration for Community Living (ACL) should jointly promote and 

distribute information about supported decision-making and self-determination as 

methods to engage individuals with intellectual disabilities in their own lives and exercise 

their rights throughout their lives. 

The OSERS and the ACL should work jointly to disseminate information about selfdetermination skill development and supported decision-making for people with ID throughout 

their lives. This dissemination should frame decision-making and self-determination as basic 

human rights and as a natural part of the human experience. To improve the trajectory of 

inclusion for individuals with ID, they should be supported in developing such skills as early as 

possible. Professionals (e.g., teachers, child care providers, personal care attendants) should be 

knowledgeable about self-determination and supported decision-making skills and should 

provide opportunities for children and young people with ID to develop those skills. 

Likewise, those in a position to make decisions about guardianship for people with ID 

should have access to information about alternatives. In a study exploring the awareness 

perception of guardianship and its alternatives among educators, students with disabilities, and 

parents, it was found that almost all parties were aware of the nature and process of guardianship 

but few were aware of any alternatives, such as supported decision-making (Millar, 2007). The 

ACL and the OSERS should put in place strategies to provide guardianship decision-makers, 

such as judges, court officials, social workers, and transition specialists, with information about 

alternatives to guardianship. 

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Recommendation #53: The U.S. Departments of Education, Labor, and Health and Human 

Services should include in their personnel development grant programs requirements for 

education about supported decision-making and guardianship. 

For all competitive grants related to pre-service and professional development in each of 

the three departments, grantees should be required to provide evidence-based instruction about 

supported decision-making and its outcomes related to autonomy, self-determination, and quality 

of life. Likewise, instruction should be required about the potential abuses and negative 

outcomes associated with guardianship. 

Recommendation #54: The U.S. Department of Justice should consider including a 

competitive preference for its Bureau of Justice Assistance competitive grant programs to 

expand the knowledge of court officers about supported decision-making and 

guardianship. 

The Department of Justice, through its Bureau of Justice Assistance competitive grant 

programs, should offer a preference for applicants who include evidence-based instruction for 

judges and court officers about supported decision-making and its outcomes related to autonomy, 

self-determination, and quality of life. Likewise, instruction should be required about the 

potential abuses and negative outcomes associated with guardianship. 

Recommendation #55: The U.S. Department of Education should require, as part of the 

requirements for reporting data for IDEA Indicator 13, that the notice provided to families 

and youth with disabilities leading up to the age of majority include robust information 

about the implications of guardianship and options for supported decision-making. 

The U.S. Department of Education should include in its reporting requirements 

concerning transition activities the mandate for states and local school districts to supply data 

regarding the type of information they provide to families and youth with disabilities about 

shared decision-making and the implications of partial and full guardianship. The Department 

should use the most up-to-date information generated by the National Institute on Disability, 

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Independent Living, and Rehabilitation Research (NIDILRR), the Eunice Kennedy Shriver 

National Institute of Child Health and Human Development (NICHD), and the National Institute 

on Aging (NIA) about supported decision-making. The Department should also provide 

guidance about the quality of information to be shared. The percentage of families and students 

with disabilities receiving such information should be reported annually. 

The members of the President’s Committee for People with Intellectual Disabilities are 

hopeful that this Report will provide a strategy for strengthening federal policies in the areas of: 

family engagement, education, transition, and self-determination and supported decision-making 

to place people with intellectual disabilities on a new trajectory to full inclusion and access to 

opportunities for the highest quality of life. 

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REFERENCES
 

Advisory Committee on Increasing Competitive Integrated Employment for Individuals with 

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FREQUENTLY USED ACRONYMS
 
 

AAIDD American Association on Intellectual and Developmental Disabilities 

AIDD Administration on Intellectual and Developmental Disabilities 

AoD Administration on Disabilities 

ASD Autism Spectrum Disorder 

CE Customized Employment 

CIE Competitive Integrated Employment 

CNCS Corporation for National and Community Service 

CRDC Civil Rights Data Collection 

DD Developmental Disabilities 

EAHCA Education for All Handicapped Children Act 

ESEA Elementary and Secondary Education Act 

ESSA Every Student Succeeds Act 

FAPE Free Appropriate Public Education 

FINDS Family and Individual Needs for Disability Supports 

HCBS Home and Community Based Services 

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HEOA Higher Education Opportunity Act 

HHS U.S. Department of Health and Human Services 

ID Intellectual Disabilities 

IDEA Individuals with Disabilities Education Act 

IEP Individual Education Plan 

LEA Local Educational Agency 

LEND Leadership and Education in Neurodevelopmental Disabilities 

NCLB No Child Left Behind 

NHIS National Health Interview Survey 

NIDILRR National Institute on Disability, Independent Living, and Rehabilitation Research 

OESE Office of Elementary and Secondary Education 

OSERS Office of Special Education and Rehabilitation Services 

PIE Partnerships in Employment 

PROMISE Promoting Readiness of Minors in Supplemental Security Income 

PTI Parent Training and Information Centers 

RSA Rehabilitation Services Administration 

86
 
 

 

 


 

SE Supported Employment 

SWIFT Schoolwide Integrated Framework for Transformation 

UDL Universal Design for Learning 

VR Vocational Rehabilitation 

WIOA Workforce Innovation and Opportunity Act 

87
 
 

 

THE PRESIDENT’S COMMITTEE FOR PEOPLE WITH INTELLECTUAL 

DISABILITIES: MEMBERS 

PCPID CITIZEN MEMBERS 

Jack Martin Brandt, Chair 

Richmond, Virginia 

Julie Ann Petty, Chair Emeritus* 

Fayetteville, Arkansas 

Susan Axelrod* 

Chicago, Illinois 

Peter V. Berns 

Washington, D.C. 

James T. Brett 

Boston, Massachusetts 

Kenneth Capone 

Elkridge, Maryland 

Micah Fialka-Feldman 

Syracuse, New York 

Dan Habib 

Concord, New Hampshire 

Zachary W. Holler 

Clayton, Ohio 

Stacey Milbern* 

Berkeley, California 

Lisa M. Pugh 

Stoughton, Wisconsin 

Michelle “Sheli” Reynolds, PhD 

Prairie Village, Kansas 

Deborah Spitalnik, PhD 

New Brunswick, New Jersey 

Michael Strautmanis* 

Chicago, Illinois 

Ricardo T. Thornton, Sr. 

Washington, D.C. 

Elizabeth Weintraub 

Rockville, Maryland 

Sheryl White-Scott, MD* 

New York, New York 

Betty Williams 

Richmond, Indiana 

*No longer serving on the Committee at the time of publication 

i 
 

 

 


 


 


 


 


 


 


 


 


 

EX OFFICIO MEMBERS AND REPRESENTATIVES 

The Honorable Loretta E. Lynch 

Attorney General, U.S. Department of Justice 

Represented by: 

Benjamin “Bo” Tayloe, Jr. 

Deputy Chief 

Civil Rights Division, Special Litigation Section 

U.S. Department of Justice 

Alternate Contact:
 

Clarette Yen
 

Attorney Advisor, Disability Rights
 

U.S. Department of Justice 

The Honorable Sally Jewell 

Secretary, U.S. Department of the Interior 

Represented by: 

Mary Pletcher 

Deputy Assistant Secretary for Human Capital and Diversity 

U.S. Department of the Interior 

Alternate Contact:
 

Margaret Triebsch
 

Committee Management Officer
 

U.S. Department of the Interior 

The Honorable Penny Pritzker 

Secretary, U.S. Department of Commerce 

Represented by: 

Tinisha Agramonte 

Director, Office of Civil Rights 

U.S. Department of Commerce 

Alternate Contact:
 

Kathy Anderson
 

Deputy Director, Office of Civil Rights
 

U.S. Department of Commerce 

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The Honorable Thomas E. Perez 

Secretary, U.S. Department of Labor 

Represented by: 

Jennifer Sheehy 

Acting Assistant Secretary for Disability Employment Policy 

U.S. Department of Labor 

Alternate Contact: 

Michael Reardon 

Supervisory Policy Advisor, Office of Disability Employment Policy 

U.S. Department of Labor 

The Honorable Sylvia M. Burwell 

Secretary, U.S. Department of Health and Human Services 

Represented by: 

Melissa L. Harris
 

Senior Policy Advisor
 

Disabled and Elderly Health Program Group
 

Centers for Medicare & Medicaid Services
 

U.S. Department of Health and Human Services 

Alternate Contact:
 

Tiina Urv, PhD
 

Program Director
 

National Institutes of Health
 

U.S. Department of Health and Human Services 

The Honorable Julián Castro 

Secretary, U.S. Department of Housing and Urban Development 

Represented by: 

Michelle Aronowitz 

Deputy General Counsel for Enforcement and Fair Housing 

U.S. Department of Housing and Urban Development 

Alternate Contact:
 

Charlene Wills
 

Trial Attorney
 

office of General Counsel
 

U.S. Department of Housing and Urban Development 

iii 

 


 


 


 


 


 


 


 


 

The Honorable Anthony Foxx 

Secretary, U.S. Department of Transportation 

Represented by: 

Stephanie Jones
 

Deputy Chief of Staff, Office of the Secretary
 

Acting Director, Departmental Office of Civil Rights
 

U.S. Department of Transportation 

Alternate Contact: 

Yvette Rivera 

Associate Director, Equal Employment Opportunity Programs Division 

U.S. Department of Transportation 

The Honorable John B. King 

Acting Secretary, U.S. Department of Education 

Represented by: 

Sue Swenson
 

Deputy Assistant Secretary
 

Office of Special Education and Rehabilitative Services
 

U.S. Department of Education 

The Honorable Jeh Johnson 

Secretary, U.S. Department of Homeland Security 

Represented by: 

Brian S. Parsons 

Senior Policy Advisor, Office for Civil Rights and Civil Liberties 

U.S. Department of Homeland Security 

The Honorable Wendy Spencer 

Chief Executive Officer, Corporation for National and Community Service 

Represented by: 

Stephanie Enyart
 

Disability and Inclusion Advisor
 

Corporation for National and Community Service
 

iv 
 


 


 


 


 


 


 


 


 

The Honorable Carolyn W. Colvin 

Commissioner, U.S. Social Security Administration 

Represented by: 

Leola Brooks
 

Senior Advisor for Disability Program Outreach
 

Office of Retirement & Disability Policy
 

U.S. Social Security Administration 

The Honorable Jenny R. Yang 

Chair, U.S. Equal Employment Opportunity Commission 

Represented by: 

Mary Kay Mauren
 

Senior Attorney/Advisor
 

U.S. Equal Employment Opportunity Commission 

The Honorable Clyde E. Terry 

Chairperson, National Council on Disability 

Represented by: 

Gary Blumenthal
 

Council Member
 

National Council on Disability
 

PCPID STAFF 

Aaron Bishop, MSSW 

Commissioner, Administration on Disabilities 

PCPID, Designated Federal Officer 

Michael Gamel-McCormick, PhD 

Consultant 

Allison Cruz 

Director, AIDD-Office of Innovation 

Madjid “MJ” Karimi, PhD, CPH 

Team Lead and Report Project Manager 

Sheila Whittaker 

Program Assistant 

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ADDITIONAL ACKNOWLEDGMENTS 

The President’s Committee for People with Intellectual Disabilities wishes to thank the following 

individuals for their assistance, contributions, and review of this Report: 

Julia Bascom 

Deputy Executive Director
 

Autistic Self Advocacy Network
 

Washington, D.C.
 

Molly Burgdorf, JD 

Senior Advisor
 

Administration for Community Living
 

Center for Disability and Aging Policy
 

U.S. Department of Health and Human Services
 

Washington, D.C.
 

Dawn Carlson, PhD 

Rehabilitation Specialist
 

Administration for Community Living
 

National Institute on Disability, Independent Living,
 

and Rehabilitation Research
 

Washington, D.C.
 

Erik Carter, PhD, FAIDD 

Associate Professor
 

Department of Special Education
 

Vanderbilt Peabody College
 

Nashville, Tennessee
 

Larissa Crossen 

Program Specialist
 

Administration for Community Living
 

Administration on Intellectual and Developmental Disabilities
 

U.S. Department of Health and Human Services
 

Washington, D.C.
 

vi 
 

 

 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

Richard A. Davis 

Policy Advisor
 

Workforce Systems Policy Team
 

Office of Disability Employment Policy
 

U.S. Department of Labor
 

Washington, D.C.
 

Curtis L. Decker, JD 

Executive Director
 

National Disability Rights Network
 

Washington, D.C.
 

Robert Dinerstein, JD 

Professor of Law
 

Associate Dean for Experiential Education
 

American University, Washington College of Law
 

Washington, D.C.
 

Tawara Goode, MA 

Director
 

National Center for Cultural Competence
 

Georgetown University Center for Child and Human Development
 

Washington, D.C.
 

Judith E. Heumann 

Special Advisor for International Disability Rights
 

U.S. Department of State
 

Washington, D.C.
 

Ryan King and Susie King 

Advocates
 

Washington, D.C.
 

Regina “Gina” Kline 

Senior Counsel
 

Office of the Assistant Attorney General
 

Civil Rights Division
 

U.S. Department of Justice
 

Washington, D.C.
 

vii 
 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

Serena Lowe, PhD 

Senior Advisor
 

Administration for Community Living
 

Center for Disability and Aging Policy
 

U.S. Department of Health and Human Services
 

Washington, D.C.
 

Heidi Mann 

Writing Specialist
 

Final Touch Proofreading & Editing, LLC.
 

Ely, Minnesota
 

Ophelia McLain, DHA 

Director
 

Office of Program Support
 

Administration on Intellectual and Developmental Disabilities
 

U.S. Department of Health and Human Services
 

Washington, D.C.
 

David O’Hara, PhD 

Interim President and Chief Executive Officer
 

Westchester Institute for Human Development
 

Valhalla, New York
 

Carol Quirk, EdD 

Executive Director
 

Maryland Coalition for Inclusive Education
 

Executive Team of the SWIFT Center
 

Hanover, Maryland
 

Amanda Rich, PhD 

Assistant Professor
 

Behavioral Science/Sociology
 

York College of Pennsylvania
 

York, Pennsylvania
 

Barb Trader 

Executive Director
 

TASH
 

Washington, D.C.
 

viii
 

 


 


 


 


 


 


 


 


 


 


 

Eric Weakly, MSW, MBA 

Aging Services Program Specialist
 

Administration for Community Living
 

Center for Disability and Aging Policy
 

U.S. Department of Health and Human Services
 

Washington, D.C.
 

Corinne Weidenthal, EdD 

Education Program Specialist
 

Office of Special Education Programs
 

U.S. Department of Education
 

Morgan Whitlatch, JD 

Senior Attorney
 

Quality Trust for Individuals with Disabilities
 

Washington, D.C.
 

ix 

 


 


 


 


 


 


 


 

The Administration for Community Living
 

The Administration on Disabilities
 

The President’s Committee for People with Intellectual Disabilities
 

Mary E. Switzer Memorial Building
 

330 C Street, S.W.
 

Washington, D.C. 20201
 

Phone: (202) 795-7374
 

Website: http://www.acl.gov/programs/aidd/Programs/PCPID/