Much of the back and forth over the House GOP’s proposed American Health Care Act has focused on the number of people likely to lose coverage because of the legislation. That’s understandable, given that the Congressional Budget Office predicts 24 million fewer people will be insured as a result of AHCA. Yet for millions of people with disabilities receiving Medicaid-funded home care, the House legislation means something worse than loss of coverage: loss of freedom.
Many people with disabilities already had access to Medicaid prior to the Affordable Care Act, due to automatic Medicaid eligibility available for those receiving Supplemental Security Income, one of the two major programs that provide income to non-veterans with disabilities. For this population, the greatest threat AHCA poses comes in the form of Medicaid per capita caps, a major shift in the traditional state-federal partnership that has defined the Medicaid program for half a century.
For the past 50 years, the main goal of disability rights activists has been to help people with disabilities transition out of institutional settings and into their own homes and communities. To accomplish this, advocates and policymakers have worked to establish an extensive system of support services for seniors, non-elderly adults, and children with disabilities; rather than pushing people into segregated settings, the support now comes to them, in their homes.
Between 1960 and 2013, as a result of this effort, states closed 219 state institutions for people with intellectual and developmental disabilities. Whereas in 1977 the average person with a developmental disability lived in a place that housed 22.5 people, by 2011 that number had dropped to 2.3, reflecting a vast shift toward integration and personalization of services. All this progress has taken place under the umbrella of the Medicaid program, the primary payer for both institutional and community-based care — with a nudge from the Americans With Disabilities Act. Today, approximately 3 million people with disabilities receive home- and community-based services from Medicaid.
But now, progress on deinstitutionalization, and support for disabled Americans in general, is at profound risk under the AHCA’s Medicaid cuts, which the CBO calculates will total $880 billion over 10 years. (Earlier today, a group of disability rights activists were arrested in the Capitol Rotunda while protesting that per capita caps would cut the services that keep them and other disabled people out of nursing homes and institutions.)
Under current law, each state receives a federal match that covers a set percentage of the state’s Medicaid costs, a figure calculated based on the state’s poverty levels relative to the rest of the country. This means that states are reimbursed based on their actual Medicaid costs, which allows them to experiment by investing in new types of services or respond quickly to changing demographics or public health emergencies.
Under AHCA’s per capita cap proposal — explained in more detail by Vox’s Dylan Matthews — states would have federal funding limited to a certain level, calculated by the number of people a state has enrolled from each of Medicaid’s five population groups: seniors, people with disabilities, children, adults enrolled via Medicaid expansion, and adults enrolled through other policies. AHCA assigns each of these groups a state-by-state “cap” — determined by each state’s historical funding patterns as of 2016.
The AHCA funding formula then determines a total cap on state federal funding — one that can only grow with medical inflation. Under per capita caps, states could no longer receive additional federal funds to support a sudden emergency, unmet need, or increase in the cost of care. And since the index of medical inflation used by AHCA grows slower than projected actual Medicaid cost growth, every year states would receive a cut relative to the funding they would be eligible for under current law.
People with disabilities do better getting services at home — but Medicaid is biased in favor of institutions. As a result, home care is vulnerable to Medicaid cuts.
While seniors and people with disabilities represent a minority of Medicaid enrollees, they make up the majority of Medicaid costs; about a third of Medicaid expenditures go toward disability and aging services.
For Americans with disabilities, the ability to live outside of a nursing home or institution is not just a distinction between two somewhat different kinds of service: It’s a civil rights issue. Institutional life is often regimented, tightly controlled, and very limiting. People living in an institution may be denied basic choices, including when to go to sleep, what to eat, and whom they may talk to (and when).
It is not only rights that suffer in institutions — life skills deteriorate, too. Evidence suggests that exit into the community can actually improve the functional skills of many people with disabilities. The research shows that in domains like self-care, “community living skills,” communications, and social interaction, people have better outcomes after leaving institutions. In part due to these findings, the Supreme Court ruled in its 1999 Olmstead v. L.C. decision that the Americans With Disabilities Act required state Medicaid programs to offer community-based options as an alternative to anyone who wished to take advantage of them.
The decision was a landmark for the disabilities rights movement, but the rights it granted were not absolute: The decision of whether someone receiving state aid got the chance to live in the broader community had to be weighed “in view of the resources available to the state,” as the Court put it. (On average, and in the specific cases of the two women who inspired the Olmstead suit, it was actually less expensive to provide community-based services — although that is not always the case.) Thus, a significant loss of federal Medicaid funds would lead to a reduction in access to in-home supports.
Were a state to be sued under Olmstead for keeping disabled citizens in institutions, it might find it much easier, in a post-AHCA world, to make the case that doing so was a financial necessity, given the Medicaid cuts.
Unfortunately, while Medicaid can pay for in-home care, the program is in many ways still biased toward institutional settings. That’s because nursing homes and other institutional settings are treated as entitlements in state Medicaid programs; anyone who qualifies must get in, somewhere. In contrast, states can cap enrollment for in-home supports, and run waiting lists. (It can take years to get off a waiting list and access community-based supports.) As of fiscal year 2015, there were 640,841 people waiting for home- and community-based supports, most of whom are people with intellectual and developmental disabilities.
Since institutional coverage is mandatory while community-based support is dependent on availability of state dollars, any cuts made to Medicaid fall disproportionately on in-home care. Those $880 billion in Medicaid cuts put such services at profound risk.
Republicans know this makes them politically vulnerable — and are trying to blame Obamacare for a problem they’re making worse.
Republicans realize that this is one of their greatest political vulnerabilities in the health care discussion. Many who are perfectly content to kick low-income Americans off coverage resist the idea of taking services from children and adults with disabilities. Leaked documents from the Republican Governors Association suggest that GOP governors fear cuts to this population too, recognizing the heavy cost burden that a loss of federal support will place on states. Since such services have no corollary in private insurance, officials can’t pretend that those kicked out of Medicaid services will get them covered elsewhere — and with in-home care costing tens of thousands of dollars on average, paying out of pocket isn’t an option.
A bogus conservative claim: the Affordable Care Act’s Medicaid expansion came at the cost of people with disabilities
Starting shortly after the election, some members of the conservative media broached a new and particularly disingenuous line of attack against the Affordable Care Act: They claimed that by incentivizing states to expand Medicaid for working-age adults, the law had diverted funds away from people with disabilities, making waiting lists for community care longer. This talking point was recently picked up by prominent House Republicans, including Majority Leader Kevin McCarthy, who published a blog post about a child with a disability in Arkansas waiting for services.
But waiting lists long predate the ACA. What’s more, most states that have expanded Medicaid either have no waiting list or have reduced the size of their list since expansion. In contrast, the majority of non-expansion states have increased the size of their waiting lists — with almost half of those waiting for services in Texas and Florida, two non-expansion states. In fact, in 2014-’15 the average increase in the waiting list for in-home care was more than 2.5 times greater in non-expansion states than in expansion ones. That’s a predictable result, given that states that chose to expand were more likely to be more generous to begin with in funding their Medicaid programs.
Contrary to McCarthy’s statement, Medicaid expansion hasn’t made the waiting list problem worse. In fact, it has been of tremendous benefit for people with disabilities who can’t get on Supplemental Security Income and can now access Medicaid solely based on their low-income status. This is a particularly big problem for autistic adults, people with psychiatric disabilities, and many individuals struggling with substance abuse disorders, all of whom often struggle to get on SSI. (For some, this is because they earn slightly too much money — at jobs that don’t offer health benefits. For others, it’s just too difficult to navigate the complex Social Security Administration bureaucracy.)
This is why — far from buying into the idea that Medicaid expansion is “stealing” money from those on waiting lists — disability advocates strongly oppose rolling back Medicaid expansion. A considerable percentage of those benefiting from Medicaid expansion are people with disabilities, making the accusations of “theft” from disabled people all the more odious.
As recently as Monday night, last-minute changes to the American Health Care Act attempted to alleviate concerns from states by slightly tweaking the growth rate for the caps the legislation imposes on costs from seniors and people with disabilities. This too is a recognition that the legislation’s Medicaid cuts put disability and aging services at grave risk. Yet since the plan’s cap on federal Medicaid funding applies to a state as a whole rather than any specific population within it, this change fails to address the problem.
AHCA’s per capita cap system explicitly allows a state to apply cuts made to one population toward another; in other words, AHCA’s tweak to the funding formula improves the growth in the state’s Medicaid funding cap as a whole, with no guarantee that those services will actually serve disabled adults. And relative to current law, AHCA’s Medicaid cuts are so sizable that they will still almost surely force states to make cutbacks in in-home care programs.
If Republicans wanted to fix the waiting list problem, they could simply change Medicaid law to require states to cover in-home care on an equal basis with institutionalization. They have declined to do so.
In fact, the House bill does more than make broad-based Medicaid cuts — it also eliminates, by 2020, a part of the ACA specifically designed to help states end waiting lists for community-based care: the Community First Choice State Plan Option. That program gives states a 6 percent bump in federal matching dollars to pay for in-home attendants for disabled people — if the states eliminate their waiting lists. Eight states have taken that offer, including deep red states like Texas and Montana.
According to initial data on the first four states to roll out the program, the Community First Choice State Plan Option is already serving well over a half million people — yet the House bill being voted on this week sunsets funding for the program, cutting about $12 billion in funding for in-home care over the next decade.
The Community First Choice State Option was itself inserted into the Affordable Care Act as a compromise. It reflected the political reality that making in-home care a mandatory service under Medicaid law was not feasible at the time. I was one of the advocates who sat with the Obama administration’s Nancy-Ann DeParle, making the case for this provision as a second-best way to free thousands of people from institutional life. The willingness of AHCA’s drafters to eliminate this program makes a mockery of the already ridiculous claims that they are “saving” people with disabilities from Obamacare.
After an election season in which disability had more visibility than ever before, lawmakers know that attacking this population makes no sense in either political or policy terms. Despite the empty Republican rhetoric about “saving” disabled people from Obamacare, the AHCA’s Medicaid cuts put people with disabilities at profound risk, threatening to turn the clock back decades to a time when in-home care was rare. For people with disabilities, such a step back threatens lives — as well as the most basic of freedoms.
Ari Ne’eman is the CEO of MySupport.com, an online platform helping people with disabilities, seniors, and families to manage their in-home services. From 2006 to 2016 he served as president of the Autistic Self Advocacy Network, and from 2010 to 2015 he was one of President Obama’s appointees to the National Council on Disability. Find him on Twitter @aneeman.
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