A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.¹

Among other things, this regulation requires states to offer community services to residents of institutions, when certain conditions are met. The conditions are that: (1) the residents could be appropriately served in the community, and (2) to serve the residents in a community setting would not fundamentally alter the state's service system or be an undue burden on the state.

Institutionalization is the antithesis of integration. Ending unnecessary segregation in institutions was a central purpose of the ADA. The ADA recognizes that the segregation and isolation of individuals with disabilities is a form of discrimination.² Congress specifically found, in the text of the ADA itself, that institutionalization was a "critical area" in which "discrimination against individuals with disabilities persists" and which the ADA was intended to remedy.³

Historically, people with mental disabilities have been segregated in institutions because societal prejudices have demanded this result. Justice Thurgood Marshall once described the past discrimination against persons with mental disabilities as a "regime of state-mandated segregation and degradation ... that in its virulence and bigotry rivaled, and indeed paralleled, the worst excesses of Jim Crow".⁴

Congress enacted the ADA in order to remedy our country's history of rampant discrimination against disabled people. The ADA is intended to be a vehicle for insuring the right of disabled people to live independently and participate fully in society. As explained by the House Judiciary Committee, "the ADA is a comprehensive piece of civil rights legislation which promises a new future: a future of inclusion and integration, and the end of exclusion and segregation."⁵

Institutionalization is an extreme form of segregation. Institutionalized individuals are completely separated from the mainstream of community life and have few, if any, opportunities to interact with nondisabled individuals, other than institutional staff. As U.S. District Judge Myron Thompson recently observed, institutionalized individuals "suffer not only a dramatic loss of physical freedom with ... severely detailed control and invasive treatment, they also cannot enjoy those mundane, daily pleasures — working, shopping, enjoying the companionship of family and friends, or simply being left alone — the loss of which we on the outside would find to be not only intolerable but a threat to our very sanity."⁶

Individuals with disabilities, family members, and professionals recognize that integrated programs are the preferred setting for nearly all people with mental disabilities. The vast majority agree that most individuals with mental disabilities — even those with severe disabilities and complex needs — can live successfully in community settings. The ARC, the premiere family organization interested in mental retardation, as well as People First, the national self-advocacy organization for people with mental retardation, have proclaimed that no individual with a mental retardation should have to live in an institution. In the field of mental illness, the great weight of family, consumer, and professional opinion is that individuals with mental illness should be institutionalized only for short periods during acute phases of their illness.

In institutions, schedules are artificially created and mechanically followed. Residents must eat, sleep and carry out all aspects of their daily lives according to schedules that are based on the institution's needs, and that are established and enforced by facility staff. They cannot choose and prepare their own meals; they cannot relax, go outdoors, or spend their time as they see fit;⁷ or take care of their personal needs in private. Confined to the grounds, they have little entertainment and few if any job opportunities. They cannot worship with their neighbors or have an active role in family and community life.

As Alabama advocate Ann Marshall has said,

Consumers, ex-patients, people with mental illness want the opportunity to regain the part of their lives which mental illness has taken from them. They want services and help near their homes, as do people with other illnesses. They want to go down to the local 7-11 for a cold coke on a hot summer day without being part of a "group outing." They want to walk city streets without an "aide" and be able to talk on the telephone any time of the day or night, not as a "privilege" but for the pleasure of talking with a friend. An institution does not give life to people; it only takes it away.

Moreover, institutions are not safe havens. As litigation has repeatedly shown, residents are often victims of poor care, excessive restraint, and even assault. It is important to remember that institutions are generally not tranquil places where treatment and support is continuously provided by highly skilled practitioners. Locked units in particular are often confusing and dehumanizing environments and, for most of the day, they are tended by line staff who are not professionals. Even in the best of institutions, residents tend to lose social skills, as well as other capacities important for independent living. Individuals in state hospitals often suffer from psychic damage such as "apathy, mechanization, dehumanization, loss of initiative, submissiveness, resigned acceptance, psychological damage, estrangement, deviant social values, social isolation, dependency, denial and inability to make decisions."⁸ Numerous studies have demonstrated that residents improve their functioning, as well as their "quality of life," when they receive care in the community.⁹ Again, from Ann Marshall:

So many times I heard a person say, "How am I ever going to learn how to be well if I'm never around anyone but sick people?".... These hospital experiences affect the way you feel about yourself and others and adjusting back to the 'normal' world can be extremely difficult, especially if you go back to a world where you have strained personal relationships, lost employment and no supports to help you adjust to community life again.

Today, thousands of individuals with mental disabilities are needlessly segregated in institutions. In most cases, their treating professionals have recommended that they be served in community settings. They remain confined in state developmental centers and psychiatric hospitals contrary to the best judgment of the states' own professionals.

The ADA offers but a single defense for such conduct. To avoid liability under the ADA, a state must prove, in essence, that it would be "unreasonable" to require that community services be offered to those whom it has needlessly institutionalized, because it would work a "fundamental alteration" in the state's service system or impose an "undue financial burden" on the state.

Few, if any states, can establish this defense. In policy if not practice, states have committed themselves to providing care in the "least restrictive setting." All states operate systems of community-based services, and states now serve the majority of their clients in community settings. Given this state of affairs, no "fundamental alteration" is required in the way states operate their service systems, in order to accommodate the community service needs of those left behind in institutions. At most, states must make adjustments to their systems, by redirecting resources and efforts.

Moreover, such adjustments would not impose an "undue burden" on states. As a rule, community services are less expensive institutional services. In Alabama, for example, where we recently litigated claims for community services, the court found that, by closing one bed in a developmental center (an institution for people with mental retardation), the state could save enough money to fund two community placements. While the disparity between the cost of institutional and community services is not everywhere so great, most states could close all their institutions for people with mental retardation and transfer all the residents to community settings at a modest additional cost. The picture is similar when it comes to services for people with mental illness. It would be cost-effective to provide community services to those improperly relegated to the back wards of state hospitals.¹⁰

Congress anticipated that accommodating the needs of individuals with disabilities would carry some costs. Congress concluded, however, that while the ADA "might pose difficulties for financially strapped state and local governments, . . . the overall long term benefit to society outweighed the costs."¹¹ As Senator Hatch recognized, at least in the short run, the ADA would impose a lot of expenses and rightly so. It is time we did these things. It is time that we brought persons with disabilities into full freedom, economic and otherwise, with other citizens in our society."¹²

It is time that we brought people with mental disabilities into the mainstream, including the vulnerable and challenged unnecessarily segregated in institutions. To accomplish this, we need meaningful enforcement of the "integration mandate." While the U.S. Department of Justice has begun to do its share, other federal agencies, as well as state governments, have not done their part. I urge the Commission to do what it can to improve enforcement of this vital provision of the ADA. And I thank you for the opportunity to address the Commission on this matter.

Notes

1. 28 C.F.R. § 35.130(d). In promulgating this regulation, the Attorney General described an integrated setting as one "that enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible." 28 C.F.R. pt. 35, app. A (preamble to ADA regulations governing public entities) at 452 (1994). The Department of Justice is charged with interpreting and enforcing Title II (the Public Services provision) of the ADA. 42 U.S.C. § 12133; see also 28 C.F.R. §130.90(a). Return to text.

    

2. 42 U.S.C. § 12101(a)(2)&(a)(5). Return to text.

    

3. Id. at § 12101(a)(3). Former Senator Lowell Weicker, the original sponsor of the ADA and former Chair of the Senate Subcommittee on the Handicapped, testified before that committee as to the intent of the ADA:

   For years, this country has maintained a public policy of protectionism toward people with disabilities. We have created monoliths of isolated care in institutions and in segregated educational settings. It is that isolation and segregation that has become the basis of the discrimination faced by many disabled people today. Separate is not equal. It was not for black[s]; it is not for the disabled.

   Americans with Disabilities Act Hearing before the Senate Comm. on Labor and Human Resources and Subcomm.on the Handicapped, 101st Cong., 1st Sess. 215 (1989) (statement of former Sen. Weicker). Return to text.

4. City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 462 (1985) (Marshall, J., concurring in part and dissenting in part) . See also Cook, The Americans With Disabilities Act: The Move to Integration, 64 Temple L. Rev. 393, 399-407 (1991) (detailing government-imposed segregation and discriminatory attitudes and practices); Homeward Bound, Inc. v. Hissom Memorial Center, 1987 WL 27104 at *8 ("[H]istorically prejudice was one of the reasons institutions for [the] retarded were created. Sadly, the evidence reflects that our retarded citizens have been put in institutions to be put away from society.") Return to text.

5. H.R. Rep. No. 485, 101st Cong., 2d Sess., pt. III at 26, reprinted in 1990 U.S.C.C.A.N. 445, 449. Return to text.

6. Wyatt v. King, 773 F. Supp. 1508, 1512 (M.D. Ala.), order clarified by 781 F. Supp. 750 (1991). Return to text.

7. When asked, "What do you like to do in the community?," a client with mental retardation replied "My lord, yes. Shop around, pay cable bills, play tape recorder, library, garage sales, shopping." One client with mental illness said, "In the community, I am primarily responsible for what I do and when I do it.... I plan and schedule activities because I choose to, because community-based recovery has enabled me to make these choices." Another said, "My life is now built around my marriage and my job -- two situations which were not possible when I was hospitalized.... I have access to a wide variety of informative, inspiring reading matter... I can operate an automobile and have virtually unrestricted mobility; I can select friends with no artificial barriers." See Homeward Bound, Inc. v. Hissom Memorial Ctr., 1987 WL 27104 at *16 (quoting individuals with mental retardation released from state institution: "I got a job, it pays good money .... I hope to get me a better job making better money, a place of my own where I can be on my own, more independent living...;" "I improved a lot ... my whole life has changed a lot. I've got a lot more freedom to myself, I can do what I want to ... I can see people I want to see, my friends, like that. At Hissom you couldn't do that ..."). Return to text.

8. Priscilla Ridgway, The Voice of Consumers in Mental Health Systems: A Call for Change at 4 (National Institute of Mental Health Dec. 1988). Return to text.

9. See John Lord and Alison Pedlar, Life in the Community: Four Years After the Closure of an Institution, 29 Mental Retardation 213 (Aug. 1991); Priscilla Ridgway, The Voice of Consumers in Mental Health Systems: A Call for Change (literature review) at 4 (National Institute of Mental Health Dec. 1988); James W. Conroy and Valerie J. Bradley, The Pennhurst Longitudinal Study: Combined Report of Five Years of Research and Analysis, U.S. Department of Health and Human Services 97-98 (1985); Charles A. Kiesler, Mental Hospitals and Alternative Care: Noninstitutionalization as Potential Public Policy for Mental Patients, 37 Am. Psych. 349 (Apr. 1982) (literature review). See also Halderman v. Pennhurst State School and Hospital, No. 74-1345, 1989 U.S. Dist. LEXIS 10147 (E.D. Pa. 1989) at *2 - *3 ("The empirical evidence ... [is that] transfers from Pennhurst to community living arrangements have enabled the retarded to develop their capabilities, enjoy a fuller life and in some instances become self- supporting residents in the community."). Return to text.

    

10. The technology for providing integrated services is well known and accepted among professionals. Service providers, including states and localities, have created a range of supportive services in the community that promote choice and self determination. See, e.g., Leonard J. Stein and Mary Ann Test, Alternatives to Mental Hospital Treatment I: Conceptual Model, Treatment Program and Clinical Evaluation, 37 Arch. Gen. Psych. 392 (Apr. 1980); Robert G. Wright, Julia R. Heiman, Jill Shupe and Glenette Olvera, Defining and Measuring Stabilization of Patients During Four Years of Intensive Community Support, 146 Am. J. Psych. 1293 (Oct. 1989); W. Patrick Sullivan, Reclaiming the Community: The Strengths Perspective and Deinstitutionalization, 37 Social Work 204 (May 1992); Frank J. Menolascino, Clinical Care Update: Model Services for Treatment/Management of the Mentally Retarded-Mentally Ill, 25 Comm. Mental Health J. 145 (Summer 1979); Sandi Levy Barbero, Community-Based Day Treatment for Mentally Retarded Adults, 34 Social Work 545 (Nov. 1989). Such services — community treatment, crisis intervention, respite care, rehabilitation and employment programs, and case managers — are widely embraced by consumers. See Beth Tanzman, An Overview of Surveys of Mental Health Consumers' Preferences for Housing and Support Services, 44 Hosp. Comm. Psych. 450 (May 1993); Judi Chamberlin and Joseph A. Rogers, Planning a Community- Based Mental Health System: Perspective of Service Recipients, 45 Am. Psych. 1241 (Nov. 1990). Return to text.

11. Kinney v. Yerusalim, 812 F. Supp. 547, 552 (E.D. Pa. 1993), aff'd, 9 F.3d 1067 (3d Cir. 1993). Return to text.

12. 135 Cong. Rec. 19835 (1989). Return to Text.