Impact Feature Issue on the ADA and People with Intellectual Developmental, and Other Disabilities

In the introductory language of the Americans with Disabilities Act (ADA) there is a section titled “Findings and purpose” (Sec 12101). This is what Congress found to be true at the time the ADA was passed, and the conditions that the ADA was intended to address. Thinking about how things are today, we must ask ourselves whether these still ring true:

(a) Findings. The Congress finds that(1) some 43,000,000 Americans have one or more physical or mental disabilities, and this number is increasing as the population as a whole is growing older;(2) historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem;(3) discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services;(4) unlike individuals who have experienced discrimination on the basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination;(5) individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities;(6) census data, national polls, and other studies have documented that people with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally;(7) individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society;(8) the Nation’s proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals; and(9) the continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous, and costs the United States billions of dollars in unnecessary expenses resulting from dependency and nonproductivity.(ADA, 1990)

While progress has been made, the intended purposes of the ADA have certainly not been fully realized. People with intellectual and developmental disabilities (IDD) still experience discrimination and stigma, and have limited choices about many important areas of their lives.

There is Much Left to Do

In recent decades, there has been significant progress in people moving out of institutions and into the community. In the mid-1960s, well over 220,000 people with IDD lived in large State-run institutions. In 1990, 84,239 lived in institutions. And in 2012, approximately 27,000 people with IDD still lived in institutions. Since 1962, 220 institutions have closed and State developmental disability agencies report that 14 plan closures in the next few years (Larson et al., 2014). While as a nation we have reduced the numbers of people with IDD who live in large State-run institutions, we have a long way to go at ridding institutional biases and attitudes from residential and community living supports. We need to redefine “institution” as a place where people are controlled, a place where people experience negative attitudes and lack of respect, and a place where people have few, if any, real choices about the most important and the simplest things in their lives. Far too often what we consider community living for people with IDD is not real community living and participation. Small group homes and supported living programs can be institutions if the attitudes of the staff, program rules, and policies and regulations promote institutional behavior, structures, and biases.

Though most people with IDD live in the community, they are not necessarily given opportunities to participate in their communities as full citizens. We need to redefine community living so that it is about more than the address at which one resides, the size of the place in which one lives or the number of roommates one has. It is also more than a place that provides physical and emotional well-being, and safety. Community living needs to be about the quality of the person’s life and the choices they are able to make about their life. Community living is about being able to live in a community of your choice, with people you want to live with (knowing some people prefer to live alone). It is about being employed and earning wages that provide opportunities for you to meet your obligations and pay for things you enjoy in life. Being engaged and welcomed in community events, activities, and organizations is another essential aspect of community living. The opportunity for people with IDD to practice their faith of choice and be connected to an array of friends and family with whom they have deep personal and intimate relationships is community living and participation. Having the opportunity to grow and develop through education and life-long learning, as well as explore areas of personal interest, is a part of community living. Lastly, making choices, taking risks, and determining the course of your own life while simultaneously accepting the responsibilities of citizenship (such as paying taxes and voting) is essential to community living and participation.

The overwhelming majority of people with IDD do not have real jobs and do not earn livable wages. In 2012, roughly 600,000 people with IDD received day or employment services funded through a State DD agency. However, of these, a little over 100,000 actually had jobs in integrated employment (Butterworth, Smith, Hall, Migliore, Winsor & Domin, 2014). Those that did have jobs made very little money; weekly wages for people with IDD averaged a little over $100 in both competitive and individual supported employment (HSRI, 2014). People with IDD want and need real jobs for which they get paid real wages. Expectations need to be placed on schools to prepare people with IDD for work, and our systems need to support them in preparing for, finding, and keeping jobs, as well as developing careers. Embracing and realizing the promise of Employment First policies is a good place to start. As a nation, we need to expect and support all people with IDD in working.

Access to information is also a significant challenge for people with IDD. While efforts have been made to make the Internet, movies, television, and other forms of media and communication accessible to people with disabilities, little attention has been paid to cognitive accessibility for people with IDD. In today’s society, it is critical to have accessible technology to access, use, and disseminate information. The information gap is significant and the vast majority of people with cognitive disabilities have limited or no access to information they can understand and communication technologies they can use (Coleman Institute, 2014). Information is power. We need to ensure that people with IDD have access to technology devices that use universal design principles and can be used by all citizens irrespective of the nature of their disability. Commercial vendors need to be forced to attend to access issues that make devices and software usable by people with IDD.

Conclusion

While there is much to celebrate in the 25th anniversary year of the ADA, there is still far too much left undone. As a nation, we must move forward with vigilance to fully realize the promise of the ADA for persons with intellectual and developmental disabilities. Ensuring opportunities for true community living, integrated employment, and access to information technology are perhaps the most significant next steps we can take to realize the promise of the ADA in the United States.

While the government has a responsibility to enforce mandates and guidelines, people with IDD, allies, providers, and policymakers have responsibilities, too. Everyone must demand change. The status quo cannot be tolerated. It will take a unified voice to change communities, and the opinions of citizens within our communities.