For Americans with disabilities home care is a right.
Democratic presidential candidate, Pete Buttigieg, recently unveiled a plan about how Americans with disabilities will fit into his “Medicare for all who want it.” This is a big deal. While healthcare reform is on everyone’s mind, candidates have been silent about how their plans will specifically address long-term community-based care for non-elderly people with disabilities. Millions of Americans currently depend on Medicaid funds in order to realize their civil right to live free from confining and isolating residential facilities.
Medicaid (not Medicare) is the largest payer of in-home care in the US but that doesn’t mean people with disabilities are entitled to it. As a result, cuts to Medicaid almost always lead to cuts to optional community-based care, not nursing home care which states are legally required to provide.
Millions of Americans currently depend on Medicaid funds in order to realize their civil right to live free from confining and isolating residential facilities.
For years following the early 1980’s implementation of a waiver system meant to channel money from nursing homes to home care, both Democrats and Republicans recognized this institutional problem. Despite numerous (often bipartisan) attempts to reform the bias favoring nursing home care, little real change has come about.
The 1990s began with a great deal of promise as the ADA was supposed to clarify and extend disability rights, although it wasn’t immediately clear how the ADA alone could limit needless institutionalization without actual reforms to Social Security and Medicaid. Bill Clinton’s focus on healthcare reform signalled new political opportunities to legislators and activists. By then, growing inpatient and disillusioned with the political process, activists took to the streets demanding that long-term community-based care be part of the healthcare reform conversation – an eerily familiar cry as the disability community today is left wondering where they fit into proposed Democratic plans.
Like many Democrats past and present, Clinton saw disabled people as a key constituency in his plans for healthcare reform. However, the former president encouraged activists to target members of Congress to act on Medicaid reform while his administration backed away from any serious discussion about the right to home care.
By that time, organizations like ADAPT, which once focused on equal access to transportation, now focused exclusively on the home care issue. For example, in 1995, 250 protesters1 blocked access to a nursing home company’s head office, demanding that 25 percent of Medicaid funding to nursing homes be transferred to home-care programs. The nursing home industry worked tirelessly against plans altering the funding structure and disability groups found themselves targeting both federal and state governments, as well as the powerful nursing home industry.
Congressional Democrats and the administration backed a Newt Gingrich-led plan which sought to amend the Social Security Act in effect making home care more like an entitlement. The proposed bipartisan legislation died with the 105th Congress foreshadowing an institutional failure characterizing the next twenty years.
With the ADA now twelve years old and the 1999 Olmstead Supreme Court case which ruled that unwarranted institutionalization violates the ADA and amounts to discrimination, legislators again sought to revive efforts to amend Medicaid in 2002, and again in 2003. Later attempts like the Community Choice Act (CCA) also failed. Understandably, activists and groups like ADAPT continued the dialogue with members of Congress (although with so few hearings held on the issue, they had little opportunity to be part of public discussions) and held protests around the country.
The rest of the decade was fraught with bills proposing changes to Medicaid that never left their respective committees. Subsequently, compromises over the Affordable Health Care Act (Obamacare) left home care optional. For institutional activists in Congress, “the President had backed out of his commitment to help us pass CCA in this Congress” while ADAPT members chained to the White House Fence yelled out that “Our message in there, to the president, was this is a civil rights issue and we want you to free our people and they’re [sic] response was no!”
Politics of Empowerment sheds light on what I call a cycle of innovation, retrenchment, mobilization, and policy restoration (real or perceived, successful or failed). Home care is but one example of this cycle with similar processes occurring in educational mainstreaming and desegregation, equal access to mainstream transportation, employment discrimination and economic insecurity. The disability case is representative of American policymaking more generally and a major claim in the book is that the interplay between policy ideas, actors both inside and outside government, organizations, and institutions over a long period of time tells us a great deal about the evolution of policy and the development of political constituencies. One cannot fully appreciate where we are today when it comes to disability rights without knowing about what got us here.
Mayor Pete’s new disability plan which addresses everything from jobs to subminimum wages to educational mainstreaming, reflects these ongoing concerns that have been well-known to policymakers yet seem to have no obvious pathway to resolution. Once again, Buttigieg’s “Medicare for all who want it” plan doesn’t seem to actually guarantee a right to home care. The plan calls for ending waiting lists for waivers, not the 40-year-old waiver system which ultimately maintains the status quo.
In 2020, the ADA, considered one of the most important pieces of civil rights legislation Congress enacted, turns 30 years old. The legislation is wide-reaching in that it interacts with numerous policy arenas like transportation, education and health. But Politics of Empowerment points to an important institutional and cognitive problem hindering change: legislators treat disability rights as distinct from, rather than intersecting with, the kinds of problems and interventions their policy domains deal with.
This is as true today as it was in the past. Proposed healthcare reform plans skirt the issue of the right to home care. Instead, Democrats (including Buttigieg) may be relying on alternative means to secure these rights via the Disability Integration Act which was first introduced in 2017. The proposed bill echoes the ADA and the Olmstead ruling by prohibiting discrimination against individuals with disabilities who need long-term services and supports and would apply to private long-term care service providers. If, indeed, healthcare reform isn’t going to tackle the inherent bias towards institutionalized care, then we need parallel legislation like the Disability Integration Act. The success of this proposed plan however, is as uncertain as healthcare reform.
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Notes
- "Disabled Protesters Are Arrested After Blockading Building.” Washington Post, May 18, 1995, p. B4.
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