Impact Feature Issue on the ADA and People with Intellectual Developmental, and Other Disabilities
A Personal and Professional ADA Journey
I remember the joy and excitement felt throughout the disability community in 1990 when then-President George H.W. Bush signed the Americans with Disabilities Act. At that time, my main introduction to the disability community was through my brother, Steve, who was 33 years of age – three years my junior – and living in a state institution in Kansas for people with intellectual and developmental disabilities. His life’s journey had been one of federal- and State-enabled neglect, with even an occasional State-sanctioned tolerance of abuse.
Steve had been one of millions of people with intellectual and developmental disabilities (IDD) excluded from educational services during his childhood when the Education of All Handicapped Children Act (PL 94-142), or the Individuals with Disabilities Education Act (IDEA), or the Americans with Disabilities Act (ADA) were years away from enactment. So Steve’s life was centered on receiving either the minimum or nothing from our local school district or the State of Kansas.
That’s not to say Steve had no services. In 1966, at age 9, he was admitted to Parsons State “School” and Training Center for 11 years, then discharged to a community program known as the Johnson County Mental Retardation Center (now called Developmental Services), then discharged because of the challenges of his behavior related to autism, then returned to the locked environment of another State institution in 1983.
For many families like mine, siblings of people with disabilities often migrated into positions as disability advocates or professionals, or just plain hell raisers. I took a different route and became an advocate who ran for my state’s House of Representatives, shockingly winning by defeating an incumbent Representative. That led me to a life of activism, including being a service provider, a state protection and advocacy director, a disability advisor to both Presidents Clinton and Obama, and a disability provider trade association leader.
I am ashamed when I think of how the advocacy and service communities viewed success before the passage of the ADA. In the past, disability advocates often celebrated when state leaders gave meager hints of support, including less-than-quality services and supports or institutional programs that more closely resembled the “three hots and a cot” mentality of the corrections system than what we knew our loved ones needed or deserved. Without the force of law, people with IDD were targeted beneficiaries of paternalism by elected and appointed officials who provided not much more than the bare minimum to survive. People with IDD were often limited to getting services in locked wards, isolated State institutions in rural communities, segregated classrooms or programs with minimal expectations (if any) for the participants.
Self-advocacy in the developmental disabilities community in the 1970s and 1980s was merely in its infancy, while in the physical disability community the Independent Living movement was growing in both sound and influence. Those voices grew louder each day over the vast waste of human potential resulting from ignoring people with disabilities as a potential labor force. Through the efficacy of the greater disability community, and tremendous bi-partisan Congressional allies like Senators Bob Dole, Tom Harkin, Ted Kennedy, Lowell Weicker and Representative Tony Coelho, doubters of extending civil rights protections to people with disabilities began to fall by the wayside, and a working majority developed in Congress to send the Americans with Disabilities Act to the welcoming desk of President Bush, where he joyfully signed the ADA on July 26, 1990 on the White House South Lawn.
As enacted in 1990, the scope of the ADA was breathtaking. After decades of advocacy, the new law prohibited discrimination against people with disabilities in employment, transportation, public accommodation, communications, and governmental activities. The immediate impact of the new law was first acutely felt by individuals with physical disabilities. For people with IDD the impact of the ADA was more gradual, incremental, and often more symbolic than substantive, until later court cases proved pivotal in expanding the impact of the Act.
Services and supports for people with IDD after the ADA didn’t look too different than services before passage. In the early 1990s, institutions continued to draw down more and more fiscal resources for fewer and fewer people, while thousands needing community residential, employment or family support services were relegated to ever-growing State waiting lists. The objectives of many programs continued to be focused on meeting the minimum needs of people with IDD, focusing on their DISability and not on their abilities. Thus programs, including residential, day services, employment, and even recreational services continued to feature separation and segregation from the general community and continued low expectations of their participants.
Through the years, pressure from self-advocates and advocates, critical court decisions such as Olmstead and others, plus the actions of the U.S. Department of Justice intervening in local communities have led to a greater understanding of the full potential of the ADA. That knowledge has helped transform the face of supports and services for people with IDD.
Especially since Olmstead we have seen community residential provider programs be transformed from a money chase to see which State or federal spigot could be tapped, to a better-defined system that has moved away from institutions, embraced community residences, envisioned independent living, offered alternatives such as Shared Living and Adult Foster Care, and given greater control to self-advocates through self-directed services. The face of supports and services for people with IDD continues to change and evolve every day as funders, such as the Center for Medicare and Medicaid Services (CMS), have begun to clarify the federal government’s intent behind supporting community integration.
With the recent approval of the CMS Home and Community Based Services (HCBS) Final Rule on Community Living*, the provider and service sector will once again see a transformation in program design and a shift of power towards the individual receiving services and away from the design of service systems. Immediate changes will be felt by increased privacy, individual control over who comes and goes within individual homes, and how one’s time is spent. Further CMS actions inspired by the ADA will likely result in a reshaping of day and employment programs, including the eventual elimination of sheltered workshops, the elevation of individual salaries of people with disabilities as they earn real and competitive wages, an expansion of supported employment, and a creative journey into social enterprises.
The changes that will be brought about by the CMS Final Rule on Community Living are directly tied to our growing and evolving understanding of the ADA, and the implications of Title II prohibiting state and local entities from discriminating against individuals in the delivery of services, programs, and other activities provided by state, local or federal government. In 1990, we were slow to understand the violations of the ADA by congregate and institutional disability programs. But now, with greater understanding and clarification from CMS and the courts, we may be facing major program realignments just as remarkable as the initial effort to close State institutions. How these changes will continue to impact local community programs remains to be seen as States scramble in the next few months to respond to CMS by developing their individual State transition plans that are expected to build greater community inclusion as a basis for continuing to receive HCBS funding of residential and employment programs.
For people like my brother Steve, it’s been a long journey from an era of no laws supporting education or services for people with disabilities beyond institutional confinement. With the 25th anniversary of the ADA approaching, Steve now lives in his local community in Overland Park, Kansas, with a wonderful family supported by waiver dollars promoting shared living alternatives and strong community engagement. Would this have been possible without the ADA? I don’t think so.
I’m looking forward to seeing what the next 25 years will bring.
* See the Medicaid.gov Web page, Home and Community Based Services, for more information on the final rule (http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Home-and-Community-Based-Services/Home-and-Community-Based-Services.html).