NCD letter to President Trump regarding deinstitutionalization

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September 12, 2019

President Donald J. Trump
The White House
1600 Pennsylvania Ave. NW
Washington DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I write in response to your recent statements following the shootings in El Paso, Texas and Dayton, Ohio, calling for the rebuilding of institutions for people with psychiatric disabilities. As a national voice within the federal government for the nation’s 61 million people with disabilities, including people with psychiatric disabilities, we are eager and willing to provide advice and counsel to the Administration and Congress in the wake of these tragedies.

NCD has a wealth of policy knowledge and has issued several reports and advisory letters on institutionalization and on the nation’s mental health needs, consistently affirming the importance of deinstitutionalized care and the need for increased Federal and State commitment and resources for high-quality community-based treatment options.[1]

Beginning in the 1960s, the nation began to turn away from the model of confining and warehousing people with mental illness in institutions, largely due to the neglect, human rights violations, and poor health outcomes that people experienced in institutionalized settings. As a nation, we positively moved to a model of community-based care which allowed people to remain in their communities while receiving necessary treatment. Two legal milestones during the 1990s solidified the nation’s course towards deinstitutionalization of people with disabilities – the Americans with Disabilities Act and the Supreme Court’s Olmstead decision.

In 1990, Congress enacted the Americans with Disabilities Act to “provide a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.”[2] Congress found that “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] and that “discrimination against individuals with disabilities persists in such critical areas as … institutionalization, health services, … and access to public services.”[4] Title II of the ADA, prohibits discrimination against individuals with disabilities public entities (state and local governments.[5] The title II regulation requires public entities to “administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”[6] The most integrated setting is one that “enables individuals with disabilities to interact with nondisabled persons to the fullest extent possible . . . .”[7]

The Supreme Court affirmed the ADA’s integration mandate in its landmark decision in Olmstead v. L.C.[8] In Olmstead, Lois Curtis and Elaine Wilson were voluntarily admitted to a Georgia state psychiatric hospital, where they were treated for intellectual and psychiatric disabilities. Following the women's treatment - one for schizophrenia and the other for a personality disorder - mental health professionals concluded that each was ready to move to a community-based program. But they remained confined in the psychiatric hospital for several years. Ms. Curtis filed suit under the ADA for release from the hospital. Her suit alleged that Georgia had violated Title II of the ADA in failing to place herself and Ms. Wilson in a community-based program once their treatment professionals had determined that such placement was appropriate. On June 22, 1999, the United States Supreme Court agreed, holding that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the ADA.[9] The Court held that state and local governments must provide community-based services to persons with disabilities when: (1) such services are appropriate, (2) the affected persons do not oppose community-based treatment, and (3) affording community-based services would not fundamentally alter a state’s service system.

During the past 20 years, both Federal and State governments have been engaged in Olmstead implementation and their efforts have resulted in thousands of people with disabilities, who do not require or desire institutional placement, moving out of institutions to community placements with proper home and community-based services and supports. President George W. Bush issued an Executive Order affirming the United States’ commitment to community-based alternatives for individuals with disabilities and requiring the Federal government to swiftly implement the Olmstead decision and to assist States and localities swiftly implement the decision “to help ensure that all Americans have the opportunity to live close to their families and friends, to live more independently, to engage in productive employment, and to participate in community life.”[10] The paradigm of institutionalized care as the norm shifted mightily to appropriate community care – and rightly so. 

In 2005, Congress established the Money Follows the Person Rebalancing Demonstration (MFP)[11] which gives federal funds to states to help them move people with disabilities from institutions to their communities with the support of home and community-based services (HCBS). As of December 2016, over 75,000 people with disabilities had transitioned from institutions to home and community-based services (HCBS) through MFP.[12] And while the right to be free of unnecessary institutionalization is first and foremost an issue of civil rights, HCBS has saved millions in Medicaid dollars. The Department of Health and Human Services 2017 report to Congress on MFP shows that the transition of participants from institutions between 2008 - 2013 generated $978 million in reduced Medicaid and Medicare costs during the first year after the transition.[13] In fact, thirty-eight studies conducted between 2006 - 2013 demonstrated that providing HCBS is more cost-effective than providing services in an institution.[14] Further, MFP provides strong evidence of success at improving the quality of life of participants in fundamental ways:[15] After transitioning to the community, participants experience increases across all seven quality-of-life domains measured, and the improvements are largely sustained two years post-transition.[16]

NCD strongly supports continued Olmstead implementation by the states and rigorous enforcement of the right of people with disabilities to be free from unnecessary institutionalization. A revival of the institutional model is not cost-effective and is contrary to law and public policy. In support of this Administration, NCD recommends increased Federal commitment and support of robust, high-quality, community mental-health programs. NCD further recommends that the Federal government incentivize States to use their Medicaid funds to provide increased and easily accessible early intervention services, crisis response services, and intensive services for individuals experiencing severe symptoms.

NCD also strongly encourages Congress to reauthorize MFP which expired on September 30, 2016 and has been sustained by temporary funding. While NCD is heartened that Congress and the Administration have continued to secure temporary funding, the 44 States that rely on this funding have been operating under constant uncertainty, as have thousands of people with disabilities that can and do benefit from MFP. The States need a long-term renewal of this successful Demonstration soon so that they can continue assisting people with disabilities transition into the community and continue to save the government thousands of dollars – per federal mandate.

Thank you for your consideration of this information and NCD’s recommendations. We remain ready to assist the Administration and Congress to promote the equality, opportunity and self-determination of people with disabilities to live and work in the community, consistent with the ADA and the Olmstead decision.

Respectfully,

Neil Romano
Chairman

CC:  The Honorable Bobby Scott
Chairman
Committee on Education and Labor
United States House of Representatives
2176 Rayburn House Office Building
Washington, DC 20515

The Honorable Virginia Foxx
Ranking Member
Committee on Education and Labor
United States House of Representatives
2101 Rayburn House Office Building
Washington, DC 20515

The Honorable Lamar Alexander
Chairman
Committee on Health, Education, Labor and Pensions
United States Senate
428 Dirksen Senate Office Building
Washington, DC 20510

The Honorable Patty Murray
Ranking MemberCommittee on Health, Education, Labor and Pensions
United States Senate
428 Dirksen Senate Office Building
Washington, DC 20510




[1] See, for example, Mental Health on College Campuses: Investments, Accommodations Needed to Address Student Needs. https://www.ncd.gov/publications/2017/mental-health-college-campuses-inv... NCD Reacts to President’s Gun Control Proposals. https://ncd.gov/newsroom/2016/ncd-reacts-president’s-gun-control-propo... Home and Community Based Services: Creating Systems for Success at Home, at Work and in the Community. https://www.ncd.gov/publications/2015/02242015; Letter to Vice President Biden Regarding Anticipated Taskforce Recommendations. https://www.ncd.gov/publications/2013/Jan142013; NCD Letter to President Obama Regarding Mental Health Funding. https://www.ncd.gov/publications/2013/12202013/#Endnote3; Deinstitutionalization: Unfinished Business. https://www.ncd.gov/publications/2012/Sept192012; Letter to the President after Newtown Tragedy. https://ncd.gov/publications/2012/Dec202012; Inclusive Livable Communities for People with Psychiatric Disabilities. https://www.ncd.gov/publications/2008/03172008; The Well-Being of our Nation: An Inter-Generational Vision of Effective Mental Health Services and Supports. https://www.ncd.gov/publications/2002/Sept162002.

[2] 42 U.S.C. § 12101(b)(1).

[3] Id. at § 12101(a)(2).

[4] Id. at § 12101(a)(3).

[5] 42 U.S.C. § 12132. [N]o qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity.

[6] 28 C.F.R. § 35.130(d) (the “integration mandate”).

[7] 28 C.F.R. Pt. 35, App. A (2010) (addressing § 35.130).

[8] 527 U.S. 581 (1999).

[9] Id. at 607.

[10] Executive Order: Community-based Alternatives for Individuals with Disabilities. June 19, 2001. https://georgewbush-whitehouse.archives.gov/news/releases/2001/06/200106...

[11] Section 6071 of the Deficit Reduction Act of 2006. Section 2403(a) of the Affordable Care Act extended and expanded the demonstration.

[13] Report to the President and Congress: The Money Follows the Person (MFP) Rebalancing Demonstration. U.S. Department of Health and Human Services, June 2017. https://www.medicaid.gov/medicaid/ltss/downloads/money-follows-the-perso...

[14] Separate but Unequal: States Fail to Fulfill the Community-Living Promise of the Americans with Disabilities Act. Senate Health, Education, Labor, and Pensions (HELP) Committee. July 2013. https://www.help.senate.gov/imo/media/doc/Olmstead%20Report%20July%20201...

[15] Report to the President and Congress at 23-24.

[16] Id.