Five reasons to support the Disability Integration Act (HR.555/S.117)

We have secured a majority of members of the House of Representatives as cosponsors of the Disability Integration Act and need Speaker Pelosi to help advance our bill through regular order to the floor of the House for a vote. So now is a great time to highlight five reasons we need the Disability Integration Act.

1. DIA establishes a right to live in the community that is more extensive and enforceable than the Supreme Court’s landmark Olmstead decision.

Twenty years after the Supreme Court ruled in favor of Lois Curtis and Elaine Wilson, millions of people with disabilities are still in institutions. The Disability Integration Act clarifies and strengthens the Olmstead integration mandate by making some significant changes in federal law. These include:

  • Creating a direct and clear statutory requirement for the community integration of Americans with Disabilities in regard to the provision of Long Term Services and Supports (LTSS);
  • Adding Managed Care Organizations (MCOs) as directly covered entities;
  • Establishing a new, stronger definition of “community-based”;
  • Reducing the threshold of protection from “at serious risk of institutionalization” to “at risk of institutionalization”;
  • Eliminating the treating professional role in determining whether community integration is appropriate for the individual with an LTSS disability;
  • Establishing specific prohibitions addressing systemic discrimination which is not only permissible under current law, but rampant across the country (waiting lists, restrictive eligibility criteria, service gaps, cost caps, and inadequate rates);
  • Requiring public entities to address the need for affordable, accessible, integrated housing that is independent of service delivery;
  • Eliminating the fundamental alteration defense so that public entities will be required to modify their programs to assure that people with disabilities can receive LTSS in the community and can lead an independent life;
  • Requiring public entities and MCOs to engage in a self-evaluation that has substantial public participation;
  • Requiring public entities to develop and implement a transition plan with milestones or benchmarks;
  • Establishing a process to assess compliance with the milestones and reward states that meet their deadlines; and
  • Establishing the ability to be awarded punitive damages.

It’s a long, wonky list. As advocates, we just need to know DIA has the support of the lawyers who do this work, but importantly, the self-evaluation and transition planning processes established in DIA will reduce the need to fight for our freedom on an individual, case by case basis.

2. DIA expands the scope of assistance to include things that are not medical necessities but are needed for the individual to lead an independent life.

Since the inception of “home care” as it was described in the 1960s, LTSS have been provided primarily as a healthcare service and authorized based on medical necessity. This means people may not be able to get support for tasks that are not directly related to their personal health and safety. For example, an individual with a LTSS disability may want to have a cat, but the state’s Medicaid program forbids attendants from cleaning out the litter box because it isn’t a medical necessity. DIA recognizes that “care of others” is an Instrumental Activity of Daily Living that is part of an independent life and requires states to ensure that this support is available. This doesn’t just apply to pets, it includes children! Individuals with LTSS disabilities often cannot get support for caring for a child and attendants may be able to cook and do laundry for the disabled parent but be forbidden to do those tasks for the dependent child – even if it takes virtually no extra time. Consequently, disabled parents may need to secure volunteer support or risk losing their child. DIA recognizes that having a family and pet are part of leading an independent life and ensures that people can get this support. Other approaches, programs and civil rights laws do not address this critical issue.

3. DIA covers people with disabilities who are not in Medicaid-funded institutions.

Although Medicaid is a primary funder for institutional and community-based LTSS, it isn’t the only funder. Consequently, although Medicaid-focused solutions address the needs of many people, they leave some people out, including people with mental health disabilities in state-funded institutions and people who have privately-funded insurance that will pay for their institutionalization but won’t cover community-based services. DIA covers both of these groups and ensures they have a right to live in the community with services and supports.

4. DIA addresses gaps in services needed to support community integration.

Olmstead doesn’t require states to make “fundamental alterations” to their programs, so if a state doesn’t provide a service, it is extremely difficult to require them to establish and fund it. Although hand-on personal care and the like are generally provided, some services needed to support the integration of people with disabilities are not. For example, a Deaf-Blind individual who is institutionalized may require Support Service Providers (SSPs) to allow them to live in the community. Existing law and programs don’t address this issue, but even if a state does not provide a needed service, under DIA the individual would have the right to that service so they can live in freedom.

5. DIA ensures that people with the most significant disabilities are protected.

Program solutions don’t address the underlying ableist standard that some people are considered “too disabled” to live in the community which really means their services are considered “too expensive”. Although some of the program solutions that have been put forward ensure that community-based LTSS are available to people, they often don’t ensure people with the most significant disabilities can live in the community. In some cases, a state may be incentivized to provide LTSS in the community or a national health care plan may include community-based LTSS, while people with significant disabilities continue to be denied their right to live in freedom. DIA ensures these people with LTSS disabilities have an enforceable right to community integration.

This doesn’t mean the advances we made in programs are unimportant. In fact, the work we have done over 30 years has laid the groundwork for establishing this right. Seasoned ADAPTers and other disability rights advocates will remember that when the Americans with Disabilities Act became law and required public transportation to be accessible, the majority of transit authorities had already lift-equipped their buses. After 30 years, we have reached a similar tipping point on this issue.

Looking forward, DIA helps establish the groundwork for the next level of LTSS advocacy. Passing DIA with bipartisan support in this Congress means that future Congresses won’t need to cover those costs as part of a health care plan, making it easier to move that forward.

But, right now, we need to focus on this Congress. Urge Speaker Pelosi to advance DIA through regular order to the floor of the House for a vote today!