The Bipartisan Failure to Address Long-Term Home-Based Care for Disabled Americans

David Snodgress/Bloomington Herald-Times via Associated Press

Casey Coleman works as a server at the Wagon Wheel in Bloomington, Indiana, as a part of the school system’s Community Transitions program, which helps young adults with disabilities acclimate to the community.

Republican and Democratic voters think health care is an important problem requiring action from government. While Republicans have made themselves the anti-Obamacare party, recent Democratic debates made more salient the tension between Democrats supporting some version of Medicare for All and those promoting alternatives typically involving both a private and public option.

The problem with this trajectory is that they’re all ignoring a major issue that affects the public-option conversation: long-term care for people with disabilities. Take, for example, a 20-something person with cerebral palsy requiring a wheelchair to achieve independent mobility. It’s not Medicare that pays for that ramp or other improvements to make her home more accessible. Nor does Medicare pay for her attendants who help with daily living activities, including bathing, eating, and transporting her to work and school.

Medicare can cover medical costs for Americans with permanent disabilities, but this isn’t enough to guarantee independent living, even with recent changes to Medicare Advantage. That’s because long-term care plans under Medicare Advantage are restricted to certain providers that may not be meeting the needs of disabled people. Plus, access to these programs varies considerably depending on the state a person lives in. What about private insurance? Some people with disabilities requiring long-term care may pay for private coverage, but not only do few private plans cover these kinds of services, those that do aren’t affordable.

It is Medicaid, not Medicare and not private insurance, that is the main payer of home-based care programs for people with disabilities—and health insurance reforms that ignore that reality are going to leave millions out to dry. Just about ten million Americans with disabilities between 19 and 64 years old are on Medicaid. Many of them rely on Medicaid-funded home-based care, thanks to the Medicaid Home and Community-Based Services waivers enacted in 1981. These waivers were supposed to allow people with disabilities to receive care in the communities where they live as opposed to nursing homes, but these efforts did little to reform the funding bias that steers people into nursing homes.

The practice of institutionalizing people with disabilities came under fire well before any talk of disability rights entered into the fray. Nearly a century ago, policymakers who supported vocational rehabilitation lamented about the moral and economic obligation to do away with the practice of segregating disabled people out of sight and mind.

Republican and Democratic policymakers recognized that health care concerns for elderly Americans are not the same as those for younger people with disabilities. People recovering from an illness or in the end stage of their lives don’t need the kind of lifelong care disabled Americans in their prime need so they can work and live productive lives. Ending the warehousing of adults with disabilities in expensive institutions who could otherwise, with home-based care, contribute socially and economically seemed like something everybody could get on board with.

Yet, despite political and social-movement efforts to change the health care system, the legacy of institutional care continues to haunt people with disabilities to this day. This is in part the result of political compromises and negotiations over health care that encourage, rather than require, Medicaid funding of in-home care. In-home care is optional under federal law; nursing home care, on the other hand, is an entitlement—anyone who qualifies for long-term care must get into a nursing home. As a result, states have considerable say in how long-term care money is used.

This conundrum most recently played out in New York when, as a response to congressional cuts to Medicaid, Democratic Governor Andrew Cuomo in turn proposed cuts to in-home care, but not nursing home care, precisely because the former is optional. Suppose the young person with cerebral palsy lives in New York: She may no longer be able to pursue her bachelor’s degree or hold a job, because without Medicaid-funded in-home care, she will have to be placed in a facility.

Disability rights activists have pointed out that New York receives federal money specifically meant to incentivize in-home care and the governor’s budget goes against that principle. They point to legislation like the Americans with Disabilities Act, or ADA, which was supposed to end segregation and discrimination. Indeed, for people with disabilities, access to home-based care isn’t just a health care issue; it’s about the right to live in their communities rather than in isolating institutions. But the 1990 ADA, once hailed as a bipartisan “emancipation proclamation” for people with disabilities, did little to solve the problem of institutionalization. Even when, nearly a decade later, the Supreme Court ruled in Olmstead v. L.C. that unjustified isolation is a form of discrimination under the ADA, little changed.

There has been a lack of leadership by both Democratic and Republican administrations over the last 30 years on these points. GOP initiatives to amend Medicaid to end the nursing home funding bias, led by House Speaker Newt Gingrich in the late 1990s, went nowhere while the Clinton administration preferred leaving the issue of funding home-based care up to the states. The Bush administration abandoned any real effort to reform Medicaid.

Democratic lawmakers like Tom Harkin, Danny Davis, Chuck Schumer, Bernie Sanders, Bob Casey, and Kirsten Gillibrand saw new opportunities when Democrats regained control of both chambers in the late 2000s to introduce the Community Choice Act (CCA), which, like Gingrich’s initiative, would reform Medicaid’s funding bias. But nothing came of the bill.

Senator Barack Obama also supported the CCA, but as president, he abandoned it as he made compromises to get the Affordable Care Act passed. Today, congressional Republicans and the Trump administration continue to propose serious cuts further undermining home-based care and, making matters worse, to push for weaker fines for nursing homes that mistreat their residents.

Meanwhile, Democratic and some Republican lawmakers embarked on two parallel, but not necessarily mutually exclusive, reform trajectories. The first is Medicare for All. Although the 2019 version includes provisions for long-term home-based care for younger disabled Americans, the original bill introduced by Bernie Sanders in 2017 left much of that out. (The original proposal called for doing away with much of the existing Medicaid program, which pays for long-term care and would have required some separate system to cover the costs of in-home care for a significant number of people.)

The second path lies through the Disability Integration Act, originally introduced in 2017. Unlike Medicare for All, this legislation would have prohibited discrimination against individuals with disabilities who need long-term services and supports. Most importantly, this proposal would also apply to private insurers. The 2017 effort died in committee and a new version of the act was reintroduced this year, although no action has been taken on the bill. It may be worth integrating the bill’s anti-discrimination message into the numerous health care plans being proposed. However, there’s a lot of uncertainty around Medicare for All, and if health care reform is unsuccessful, separate legislation would still be needed to fix Medicaid’s institutionalization bias.

Another plan, the Center for American Progress’s Medicare Extra, proposes removing the asset test for people with disabilities. Currently, if a person with a disability earns “too much” or is “too wealthy” for Medicaid, they can’t benefit from government-funded home-based care. Senator Cory Booker, who generally supports Medicare for All, also proposed a plan to lower financial eligibility rates so that more working adults with disabilities would benefit from home care under a plan that sounds awfully like Medicaid.

Major structural reforms aren’t easy, and trying to find some bipartisan middle ground has proven unproductive. Legislators are clearly aware that the concerns of a large segment of the population are at risk of being ignored in the bigger conversation about Medicare for All. Whether through specific provisions in something like Medicare for All or through separate rights-based legislation, without explicit language making it illegal to place disabled people in institutions who would otherwise benefit from living in the least restrictive environment with necessary supports, history tells us that the status quo will stay in place.

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