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

The opening provisions of the Americans with Disabilities Act (ADA) note bluntly that “society has tended to isolate and segregate individuals with disabilities” and that “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” (ADA, 1990). With comprehensive prohibitions on disability discrimination and requirements for reasonable accommodation, some of the ADA’s positive impacts are clear. Buildings commonly have ramps and push-button door openers. Stadiums and movie theaters routinely offer closed captioning. But for people with intellectual and developmental disabilities (IDD), it is fair to ask the question: Has this landmark civil rights law lived up to its promise?

A review of cases involving persons with IDD can provide only a snapshot of the overall legal landscape. But the big picture of the past 25 years shows that the ADA has been an integral tool in shaping society’s understanding of what inclusion means and requires, and in helping people with IDD enforce their rights and achieve more meaningful connections to their communities.

The Early Years

In 1996, six years after the ADA was signed into law, the United Cerebral Palsy Association conducted a survey regarding the effect of the ADA on the lives of people with disabilities (United Cerebral Palsy Associations, Inc., 1996). The survey found that the ADA had made a great difference, prompting better access to buildings, greater access to transportation, and fuller inclusion in the community. Respondents described significant improvements in access to public accommodations. Most found local businesses, as well as government buildings and other public facilities, to be more accessible.

Still, mere passage of the ADA did not eliminate discrimination or problems with access to facilities and services. Given a new, broader right to seek relief for discrimination and the denial of reasonable accommodations, people with IDD used the ADA to their advantage. They sued.

Their lawsuits came in many forms. In 1996, prisoners with IDD sued officials in California, alleging they had been denied access to medication and to work and educational programming, and subjected to excessive discipline not imposed on prisoners without disabilities. After prevailing on the issue of whether the ADA may be constitutionally applied against the State, the case, Clark v. California, settled. California agreed to create a Developmental Disability Program to accommodate inmates/parolees with IDD and to monitor provision of their services.

Similar challenges to how public entities provide services to people with IDD sprung up during the ADA’s first decade. While Clark was being litigated in California, Lois Curtis and Elaine Wilson, two women living in a State psychiatric hospital in Georgia, were suing State officials for the right to receive services in the “most integrated setting” possible, consistent with their needs. Their challenge, Olmstead v L.C., drastically changed the ADA landscape for persons with IDD and other disabilities.

Olmstead and its Aftermath

The U.S. Supreme Court’s 1999 decision in Olmstead v. L.C. (1999) is now so widely known it has become shorthand for the requirement that services, programs, and activities be provided in the most integrated setting appropriate to the needs of qualified individuals with disabilities. In their effort to obtain community services, Ms. Curtis and Ms. Wilson persevered and won at each level of the case, with the Supreme Court definitively holding that the unjustified isolation of individuals in institutional settings is a form of actionable discrimination under the ADA.1

Many States responded to Olmstead by developing “Olmstead plans” (or creating workgroups to develop such plans) intended to conform their service systems to the ADA’s integration mandate. The U.S. Department of Health and Human Services issued a series of five letters to state Medicaid directors providing guidance on the requirements of Olmstead. Notwithstanding this flurry of administrative activity immediately following Olmstead, the need to litigate failures to provide services in “the most integrated setting” persisted. Those lawsuits have been relatively successful.

In 2010, Georgia settled a class action lawsuit, U.S. v. Georgia, brought by legal aid offices and the U.S. Department of Justice (DOJ) on behalf of persons with IDD and mental illness who were institutionalized in psychiatric hospitals and other facilities. The comprehensive settlement was the first to cover all of a state’s public psychiatric hospitals. It ensured that more than 2,500 persons would be offered appropriate community supports tailored to meet their needs.

After the Georgia litigation settled, the Obama administration redoubled its efforts to enforce Olmstead, with the DOJ aggressively starting and joining Olmstead lawsuits. One such case was a class action in Illinois, Ligas v. Maram. The Ligas plaintiffs alleged that Illinois violated the ADA by failing to provide services for them to live in the community, relying instead on large, privately-run institutions called Intermediate Care Facilities for People with Developmental Disabilities (ICFs/DD). After prolonged litigation, the DOJ filed a “statement of interest” 2 in the case in 2010. One year later, the case settled. Illinois agreed to expand its community services both for individuals living in ICFs/DD and those living in the community but on a “waiting list” for community services.

Beyond Public Services

While Olmstead addressed how public services are to be provided, there has also been significant ADA litigation in the area of employment.3 In one particularly poignant case, EEOC v. CEC Entertainment, Donald Perkyl, an employee with IDD, sued the pizza restaurant chain, Chuck E. Cheese’s, with help from the Equal Employment Opportunity Commission (EEOC). Hired as a janitor, Mr. Perkyl was summarily fired – against the express wishes of his own supervisor – by a district manager who allegedly did not want “those kind of people” working in the restaurant. In November 1999, a Wisconsin jury found that the company had violated the ADA, awarding Mr. Perkyl over $13 million in punitive and other damages. Although the court later reduced the award to $300,000, the maximum amount recoverable for such violations, it affirmed the verdict, noting that “the breathtaking magnitude of an eight-figure punitive damages award demonstrates that the jury wanted to send Chuck E. Cheese’s a loud, clear message.”

The EEOC obtained its biggest jury verdict ever in an ADA employment case, EEOC v. Hill Country Farms, brought by 32 workers with IDD against an Iowa turkey processing plant. Over their 20 years of employment, the plaintiffs claimed that they suffered wage discrimination and were subjected to multiple and repeated forms of verbal and physical harassment and mistreatment. Litigated in two parts, the plaintiffs first won a court judgment for over $1.3 million on their wage claims. In the subsequent 2013 jury trial on their a hostile work environment claims, the plaintiffs provided evidence that they were frequently called pejorative and offensive terms, denied bathroom breaks, and given discriminatory job assignments. Concluding that the company violated the ADA, the jury awarded each plaintiff $2 million in punitive damages and $5.5 million in compensatory damages, for a total award of $240 million.

Although such enormous awards are rare, they illustrate the power of the ADA. Fundamentally, these verdicts reflect society’s developing appreciation for how people with IDD deserve to be treated.

Current Cases and Where We’re Heading

Traditional, deinstitutionalization litigation under Olmstead continues to the present day. However, persons with IDD also continue to push the edge of the Olmstead envelope.

In Oregon, eight individuals with IDD who received services in sheltered workshops sued various state agencies in early January 2012, alleging that the failure to provide services in “the most integrated setting” violates the ADA. In a landmark, interim decision, the federal district court determined that the ADA and Olmstead apply not just to residential services but to employment supports as well. The court’s decision in Lane v. Kitzhaber effectively allows the plaintiffs’ employment-based claims to continue; currently the case is ongoing.

Similar litigation in Rhode Island recently reached a quick, comprehensive and precedent-setting settlement. In a case echoing Lane, the DOJ sued Rhode Island officials on behalf of individuals with IDD who have been unnecessarily segregated in sheltered workshops and facility-based day programs. The case, U.S. v. State of Rhode Island, settled in 2014. The settlement and consent decree address the State’s over-reliance on segregated settings in its day services programs and aim to help approximately 3,250 individuals with IDD over the next 10 years. With detailed, numerical goals regarding the people to be served and the employment outcomes to achieve, the State will provide community supports and placements to people currently in sheltered workshops and in facility-based non-work programs, as well as to students leaving high school.

Recognizing that Medicaid Home and Community-based (HCBS) waiver programs are primary tools that States can use to comply with Olmstead, the Centers for Medicare and Medicaid Services recently released a new rule describing the types and characteristics of permissible, “community based” settings (CMS, 2014). Many states have funded HCBS services in congregate settings that are not truly integrated and do not afford people independence and access to their communities. This new HCBS settings rule and related regulations requires States to develop detailed transition plans for how they will comply with the rule within the next five years.

The HCBS settings rule explicitly merges Medicaid’s service expectations with the ADA’s integration mandate. In so doing, the federal government has opened up new opportunities for people with IDD (and other disabilities). Although the failure to comply with the new rule could eventually lead to future litigation, for now, the changes represent one more step toward fulfilling the ADA’s promise of integration and inclusion.