In this report, we review the progress our nation has made since the historic enactment of the Americans with Disabilities Act (ADA) in 1990. We highlight the critical role that P&As have in enforcing the ADA integration mandate, protecting and advocating for people with disabilities still trapped in institutions and ensuring those now living in their community of choice are able to access the supports and services they need to be successful.
Our report calls attention to disturbing national trends that threaten to distort and weaken the promise of full community integration. Among them:
- Moving from Large Facilities to Smaller but Equally Isolating Settings
- A Proliferation of Intentional “Disability-only” Settings.
- Outsized Influence of A Small Minority of Individuals Over Olmstead Enforcement Activities
- Public Demand for Increased Use of State Psychiatric Hospitals and Involuntary Outpatient Commitment.
- School System Reluctance to Move away from Segregated Classrooms.
Finally, the report provides recommendations for federal and state action to mitigate these threats and to vigorously promote community-based services and supports for Americans with disabilities.
The recommendations include:
- Support increased Medicaid funding for HCBS programs. These are cost-effective programs that help people with disabilities and seniors live in their communities. Cuts to Medicaid will: weaken implementation of the 2014 federal regulations raising standards for HCBS programs; negatively impact crucial programs; and potentially putt states at risk for violating the ADA integration Mandate.
- Oppose changes to the 2014 HCBS rule that would hinder accomplishing the spirit and goal of the rule to offer supports that provide people with meaningful access to community life. The HCBS rule is the culmination of decades of advancement and bipartisan solutions to provide people with disabilities and seniors access to the broader community.
- Support creation of a Protection and Advocacy Health Advocacy Program to protect the rights of Medicaid beneficiaries. This was the recommendation of the National Council on Disability (NCD), an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policies.[i] NCD called on Congress to fund a P&A health advocacy program after finding that protections are needed for beneficiaries with disabilities who experience due process violations from managed care utilization controls.[ii]
- The Office of Special Education Programs (OSEP) monitoring process must add a least restrictive environment component. This would mean that if OSEP identifies that a state is overly relying on segregated placements, it will be flagged as a concern for the agency to address.
- In all settlement agreements between the DOJ and States regarding community integration, include a provision that the State will fund the P&A in that State to monitor community settings where transitioning individuals live and provide advocacy to such individuals.
- The Center for Medicare and Medicaid Services (CMS) should view the P&A Network as part of their panoply of independent quality enforcement strategies and provide funding to allow the P&As to monitor disability service systems receiving Medicaid or Medicare funding.
- States should take advantage of the opportunity presented by the 2014 CMS rules governing funding for HCBS settings to responsibly phase out segregated living and work environments and replace them with funding for integrated housing and supported competitive employment options.
In the 25 years since the historic enactment of the Americans with Disabilities Act (ADA), there has been an increase in the number of people with disabilities participating in all aspects of community life, from home ownership and employment to sports and the arts.[iii] Part of the ADA’s power is that it advances community integration from several fronts, bringing cohesiveness to the piecemeal structure of disability rights that has been building since the 1970’s.[iv] The ADA is a universal ban of discrimination on the basis of disability in employment, transportation, telecommunications, public accommodation, and public services. This report celebrates the importance of the ADA’s ban on discriminatory segregation and institutionalization of people with disabilities.[v]
In 1999, in the case of Olmstead v. L.C and E.W.,[vi] the U.S. Supreme Court ruled that unnecessary segregation and institutionalization of people with disabilities constitutes discrimination under the ADA. The plaintiffs, Lois Curtis and Elaine Wilson, had spent the majority of their lives in state hospitals. For the last several of these years their treatment teams acknowledged that they no longer met the requirements for involuntary confinement, but the state refused to release them to a community-based program with appropriate services. With representation by attorneys from the Atlanta Legal Aid Society, Ms. Curtis and Ms. Wilson asserted their rights under the ADA all the way to the Supreme Court. The high court made it clear that public entities must provide services to qualified individuals with disabilities in the most integrated settings appropriate to their needs. This right is frequently referred to as the “ADA integration mandate” or simply “Olmstead.”
Olmstead is synonymous with freedom for thousands of Americans with disabilities who were forced to live in segregated institutional settings in order to receive necessary services and supports. It is a source of hope for thousands more Americans with disabilities who currently reside in the community with the supports they need, but live with the fear that the loss of these supports could force them into institutions.
For more than a century laws have been in place to segregate and isolate people with disabilities in large public hospitals away from society.[vii] These laws enforced a “charity” model of disability services, removing individual rights and treating adults with disabilities like children to be protected by others.[viii] Twenty-five years since the enactment of the ADA these attitudes still persist and feed the notion that people with disabilities are somehow less worthy of the rights we demand for all other Americans.
With this societal attitude, it is no wonder that the institutions we created for people with disabilities were often underfunded and under resourced, making them harbors for victimization, abuse and neglect of people with disabilities. Historically, and still today, individuals with disabilities are oftentimes simply warehoused in these facilities and offered little, if any, treatment or education. Beginning in the 1970’s, major media sources began to make the public aware of dangerous conditions in these institutions and horrendous abuse and neglect of children and adults living within these buildings. In response, Congress created the Protection and Advocacy System (P&As).
Consisting of 57 agencies, the P&A System is the largest provider of legal services to people with disabilities and P&As are the primary enforcer of the ADA and the Olmstead decision. P&As serve every state, the District of Columbia, U.S. territory, and the American Indian Consortium including the Hopi, Navaho and Paiute Nations in the Four Corners region. P&As are authorized under various federal statutes to provide legal representation and related advocacy services to protect the rights of individuals with disabilities and investigate incidents of abuse and neglect of individuals with disabilities in institutions and the community. The National Disability Rights Network (NDRN) is the nonprofit, voluntary membership association for the P&A Systems.
An important part of P&A work is ensuring individuals with disabilities have access to appropriate, safe community housing with the services they need to facilitate community integration, independence and autonomy. P&As have assisted thousands of individuals access home and community based services and supports (HCBS). As used in this report “HCBS” encompasses the full spectrum of services and supports to people with disabilities that enable the development of relationships and a life in the community, including safe, affordable accessible housing, transportation, recreation, employment, and education. Equally important to P&A work helping people access HCBS is monitoring these settings and the delivery of services to ensure that people are safe and free of abuse or neglect.
A recent report by the National Council on Disabilities (NCD) reinforces how important it is for our nation to continue to enforce Olmstead and build robust HCBS options. NCD reviewed the research on outcomes since the Olmstead decision, and found “The preponderance of research…supports the conclusion that smaller, more dispersed and individualized community settings further integration and positive outcomes for individuals with disabilities.”[ix]
As we celebrate the progress our nation has made developing HCBS over 25 years, our mood is tempered by the knowledge that this progress has been unnecessarily slow. Individuals often seek P&A assistance after waiting years to get out of segregated settings, even when their own doctors agree that life in the community is more appropriate for them.[x]
The ADA requires states to eliminate unnecessary segregation of persons with disabilities and to ensure that individuals with disabilities receive services in the most integrated setting appropriate to their needs. This right to community integration is fragile, and there are constant pressures on states to not to enforce it. We must be vigilant against rollback and stagnation. In the next section we highlight the work of the P&As to enforce the ADA integration mandate.
[i] National Council on Disability, Part 1 Summary: NCD Medicaid Managed Care Forums (rec.2) (October 14, 2014) at http://www.ncd.gov/publications/2014/11042014.
[iii] Supra at 3.
[iv] See e.g., Arlene Mayerson, Disability Rights Education and Defense Fund, The History of the Americans with Disabilities Act: A Movement Perspective (1992) at http://dredf.org/news/publications/the-history-of-the-ada/ (discussing how disability civil rights have evolved gradually over decades).
[v] 28 C.F.R. § 35.130(d) (“[a] public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”).
[vi] 527 U.S. 581 (1999).
[vii] See e.g. Minnesota Governor’s Council on Developmental Disabilities, Parallels in Time: A History of Developmental Disabilities (Chs. 3, 4) at http://mn.gov/mnddc/parallels/index.html
[viii] Id. (Ch. 5).
[ix] National Council on Disability, Home and Community-Based Services: Creating Systems for Success at Home, at Work and in the Community, (pgs.7, 8) (Feb. 24, 2015) at http://www.ncd.gov/publications/2015/02242015/.
[x] See, Priaulx, supra, at 5 (identifying 59 ADA Integration Mandate cases on behalf of individuals in institutions and seeking community services).