HSRI's Celebration of the 60th Anniversary of the Developmental Disabilities Act

By Valerie Bradley, President Emerita, HSRI

Progress in intellectual and developmental disabilities owes much to the passage of the Developmental Disabilities Act in 1963.  One of the primary advocates for the Act was Elizabeth Boggs whose vision included building a research and training, advocacy, and oversight body in every state.   These 3 legs of the stool – the University Centers on Excellence in Developmental Disabilities, Protection and Advocacy programs, and Developmental Disabilities Councils – have provided a unique infrastructure unlike any area of human services (Subtitle B, C and D).  The Act also contributed to a standardized definition of developmental disabilities and set out expectations regarding the rights of people with IDD (Section 102). 

We have included those rights below and have cross-walked some selected responses from the National Core Indicators-IDD® 2021-2022 In-Person Survey to assess the extent to which we have lived up to those expectations.  These data reflect the outcomes of people with IDD 60 years after the passage of the Developmental Disabilities Act.  They indicate areas where we can celebrate gains (e.g., in areas of community inclusion and friendship) but where we must also acknowledge areas where we are falling short (e.g., employment, life choices, and self-direction).  There is no argument, however, that the Developmental Disabilities Act is an indisputable reason why the lives of people nationwide and their families have greatly improved over the decades since it was passed.

According to the Act (Section 109), people with IDD have the right to:

Make informed choices and decisions about their lives;

• 57% of people picked the place they live or had some input in the choice
• 44% of people picked the people they live with or had some input in the choice
• 91% of people picked the place they work or had some help making the choice
• 19% of people are self-directing

Live in homes and communities in which such individuals can exercise their full rights 
and responsibilities as citizens;

• 92% of people say that staff always treat them with respect
• 40% of people had the opportunity to vote
• 25% of people attended a self-advocacy meeting or event

Pursue meaningful and productive lives;

• 19% of people have paid community jobs
• 93% of people say that services and supports help them to lead a good life
• 20% of people take classes, trainings, or do something to get a job or do better at their current job

Contribute to their families, communities, and States and the Nation;

• 26% of people say they are part of groups, organizations, or communities
• 28% of people volunteer in their communities

Have interdependent friendships and relationships with other persons;

• 78% have friends who are not staff or family
• 68% of people can meet up with friends in person when they want

Live free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights;

• 20% of people feel afraid in their home, neighborhood, transport, workplace, day program or at other daily activities

Achieve full integration and inclusion in society, in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of each individual;

• 69% of people can do things they like to do outside the home as much as they want and 81% of people can do things outside the home with the people they want

As the Nation, States, and communities maintain and expand community living options for individuals with developmental disabilities, there is a need to evaluate the access to those options by individuals with developmental disabilities and the effects of those options on individuals with developmental disabilities.

The emergence of the National Core Indicators-IDD has made it possible to assess and evaluate the outcomes of people receiving public services and to assess the presence of important values such as person-centered approaches, self-determination, and choice and agency.

National Core Indicators – Intellectual and Developmental Disabilities is a collaboration that includes the National Association of State Directors of Developmental Disabilities, the Human Services Research Institute, and state intellectual and developmental (IDD) agencies.

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