The 1990 passage of the Americans with Disabilities Act (ADA) was aimed at ensuring that people with disabilities would have the same opportunities as their fellow Americans to participate in community life. Independence Care System was founded ten years later to provide essential services that people with disabilities need in order to live at home, in their communities, rather than be confined to institutions. However, while the ADA was a great step forward, the dream of equality and community integration for people with disabilities has not yet been fulfilled.
As we approach the 20th anniversary of the U.S. Supreme Court’s ruling in Olmstead v. L.C., it is time for Congress to strengthen the ADA’s community integration mandate by passing the Disability Integration Act of 2019. In Olmstead, the high court held that people with disabilities who are eligible for institutional care have a right to receive care in the community instead. The court based this ruling on its finding that the unjustified segregation of a person with disabilities is a form of illegal discrimination.
Despite what should be settled law, states and insurers that pay for long-term care needed by people with disabilities do not routinely provide adequate community-based services to allow them to live independently. ICS member Jason DaSilva illustrated this fact vividly and heartbreakingly in film last year, documenting his unsuccessful struggle to move across the country so that he could live near his young son.
Passing the Disability Integration Act of 2019 (DIA) will further community integration in a number of ways, fulfilling the promise of both the ADA and the Olmstead ruling. And as our healthcare and long-term care systems become increasingly expensive and politically fraught, enacting the DIA only becomes more imperative.
What the DIA Will Do
Proposed in the Senate by Minority Leader Chuck Schumer (D-N.Y.) and in the House by Rep. James Sensenbrenner (R-Wis.), this bicameral, bipartisan bill will mandate that states and insurers provide the long-term services and supports that people with disabilities must have in order to live independently, at home, in their communities.
Passing the DIA will empower people with disabilities and provide a comprehensive legal and regulatory framework to promote community integration. Specifically, the legislation:
- Prohibits government entities and insurance providers from denying community-based services to people with disabilities who require long-term services or supports.
- Prohibits the use of spurious eligibility criteria, cost caps, waiting lists, or lack of available service providers to discriminate against a person with a disability seeking community-based services and supports.
- Requires that community-based services be offered to people with disabilities prior to institutionalization and that those living in institutions be notified of community-based alternatives on a regular basis.
- Requires government housing entities to ensure sufficient availability of affordable, accessible, and integrated housing that is not a disability-specific residential setting or a setting where services are tied to tenancy.
To address the matter of enforcement, the DIA also requires the Justice Department and the Department of Health and Human Services (HHS) to issue implementing regulations and charges HHS with determining compliance on an annual basis and increasing funding to complying entities.
Last month, after intensive lobbying by the disability rights group ADAPT, the behemoth American Association of Retired People endorsed the DIA, which is also supported by leading disability, elder law, civil rights, and health policy organizations.
ADAPT is now pushing for a floor vote in the House of Representatives at the end of next month, to coincide with the ADA’s anniversary. With 224 cosponsors currently in the House (there are currently 26 in the Senate), that vote is increasingly likely – thanks almost exclusively to the advocacy of ADAPT activists and other disability rights groups.
So often we’ve seen things that people with disabilities fought for – things like curb cuts, wheelchair accessible buses, and auditory traffic signals – benefit the larger population. Today Congress and state legislatures – including ours right here in New York – are beginning to grapple with the exploding long-term care needs of a rapidly aging population. Unfortunately, those conversations are taking place mostly along partisan lines. If Congress passes the Disability Integration Act on a bipartisan basis, not only will it advance community integration for people with disabilities, it may well provide a model for the future of long-term care for the growing millions of Americans who need it.