Illustration by Mark Weber

Back in January 2016, insurgent presidential candidate Bernie Sanders announced a plan to expand Medicare to all Americans, regardless of age or disability. On the right, it was widely derided as a government takeover of health care (which it is). Among the Democratic Party establishment, it was dismissed as so radical that it wasn’t even worth considering.

Yet, come posturing time for the 2020 elections, the progressives have grown in influence, and recent polls find that a majority of Americans support the general idea of “Medicare for all.” This evolution has made support for universal healthcare a litmus test for 2020 Democratic presidential candidates. Though getting any serious health care reform through Congress would require almost everything falling the Democrats’ way, it’s worth taking a look at where the disability community sits in the current health care debate.

The Problem

Few people across the political spectrum think that America’s health care system is sustainable, and it’s easy to see why many think it is broken. A 2014 Commonwealth Fund report put the U.S. last in overall healthcare ranking of the 11 most industrialized nations. International health care rankings from a variety of sources, including the World Health Organization and the Bill and Melinda Gates Foundation, tell a common story: U.S. health care is more expensive, inefficient and inequitable than in most industrialized countries.

There are conservative policy proposals — universal catastrophic coverage, removing the tax deductibility of employer-sponsored insurance and encouraging price transparency, among others — that seek to address the crisis, but Republican repeal and replace efforts failed to introduce or explain any of these policy alternatives. That leaves progressive Democrats dominating the health care debate with talk of universal health coverage. And while “Medicare for all” has a nice ring to it, the disability community knows all too well that Medicare coverage has significant gaps.

It does cover hospital, medical and DME, as well as prescription drugs, if you qualify. But Medicare has no out-of-pocket maximum cost, meaning that anyone facing significant medical costs needs a secondary insurance — like Medicaid, a Medicare Advantage plan or private insurance — to not get bankrupted by a lengthy hospital stay or the 20 percent coinsurance on most doctor visits and procedures.  Furthermore, there are a number of important services that Medicare doesn’t cover — vision, dental, personal care attendants and other long-term support services, to name a few.

To access any of those, you need either private insurance or Medicaid. One of the problems with Medicaid is that it’s not a single, national program but a collection 56 state and territory-run programs, each with varying benefits and eligibility requirements. You need only watch “The Disability Trap” — a short documentary by Jason DaSilva about trying to move from New York to Texas to coparent his young son — to understand the horrific choices state Medicaid variations can force people with disabilities to make. Medicaid is also income-restrictive, meaning that in some states it can be impossible to maintain coverage while earning a living wage. “Part of the problem with programs like Medicaid is that they force people with disabilities and aging Americans to remain in poverty in order to receive the long-term support services that keep them alive and in their community,” says Nicole Jorwic, who works on health care policy for the Consortium of Citizens with Disabilities and the ARC.

One of the reasons fighting to save the Affordable Care Act was so important for people with disabilities was its protection for those with pre-existing conditions helped provide an option for some disabled Americans to transition off Medicare and Medicaid when they started to earn a decent income. But private insurance often doesn’t provide coverage for long-term care, so even with the ACA, those who need personal care weren’t able to share in its benefits. By packaging their repeal efforts with broad Medicaid cuts, Republicans all but ensured that the disability community would protest, which it did — in spectacular fashion. “While we fought so hard to defend Medicaid, we know it’s far from a perfect program,” says Jorwic, “but it’s also the only game in town when it comes to long-term support services.”

The Solution(s)?

What exactly is “Medicare for all”? That depends on who you ask. There were eight different Democratic health care bills in the last congress, and there are already a few that have been introduced in the current session. The major universal healthcare proposals (as of March 2019) include: The “Medicare for all” Senate bill by Bernie Sanders (D-Vt.), which has yet to be reintroduced in the new congress; the “Medicare for all” House bill by Pramila Jayapal (D-Wash.); the “Medicare for America” House bill by Reps. Rosa DeLauro (D-Conn.) and Jan Schakowsky (D-Ill.); and “Medicare Extra for All” by the Center for American Progress. Here’s what those plans propose on some key issues:

Long-Term Support Services: The Jayapal, DeLauro and Schakowsky, and CAP plans all include LTSS coverage that prioritizes home and community-based services. While the original version of Sanders’ plan didn’t include LTSS coverage, he has recently announced the new version will expand to include these services.

Single Payer or Multiple Programs: The Sanders and Jayapal plans create a single-payer government-run health plan. The CAP and DeLauro/Schakowsky plans retain some forms of employer sponsored health insurance while creating a new government-run plan that covers everyone else. There are many within the disability community that favor retaining private insurance in addition to a public option, because they don’t want people who already have good coverage to be negatively affected by inherent problems of starting a new, enormous and complex system from scratch.

Other Services: All four of these plans include medical, prescription drug, dental and vision coverage.

Complex Rehab Technology: None of the plans directly address reforming Medicare’s restrictive complex rehab technology policies. Disability organizations are actively working to move CRT reform through congress, regardless of broader reform.
All of these plans include many of the policy specifics that the disability community has been asking for — no income or asset limits, comprehensive coverage that includes LTSS, methods for reducing prescription drug prices, priority for community-based services and a cap on the out-of-pocket maximum. They might have Medicare in their titles, but they go far beyond what Medicare currently offers.
For the disability community, there are some inherent benefits to having a comprehensive, government-run program that’s available to all Americans. The patchwork of Medicaid programs would be gone, replaced by a national program providing equal access to healthcare regardless of which state you live in or how much you make; those who need long-term care would no longer be required to live in poverty in order to abide by Medicaid’s income and asset limits. While this wouldn’t fix access issues and ableism in the workplace, it would lower a major hurdle that keeps many from even attempting to find employment.
It would also normalize and stabilize government-run health insurance by turning it from chronically under-funded, at-risk enclaves of the disabled, the old and the poor into a system that everyone has an interest in maintaining.

You Need Both

For the disability community, there are encouraging signs as “Medicare for all” moves from a slogan to policy proposals. The original “Medicare for all” bill by Bernie Sanders didn’t include LTSS, but long-term care services were added after intense lobbying from the disability community. The Jayapal and DeLauro bills were both written with input from the disability community. Of the Jayapal bill, Ady Barkan, a disability-rights activist with ALS who worked with the Consortium of Citizens with Disabilities on the bill, told The Intercept: “She wrote it with our community holding the pen. Over months, disability rights activists went back and forth on the language. We are included. Not just as a sidebar or footnote.”

Organizations like the CCD, of which United Spinal Association is a contributing member, have been doing the detail work of disability activism in Washington for decades. The CCD outlined the health care needs of the disability community, and its members have been hounding policy-makers to ensure that these priorities are included in any reforms. This is a different method of self-determination than the protests over the ACA repeal efforts — less headline ready and a whole lot more granular — but it’s just as important. “You need both,” says Rebbeca Cokley, a longtime disability-rights advocate who now works at the Center for American Progress. “Movements don’t survive on advocacy or protest alone, they need both in order to thrive.”

Political momentum for a system-wide transformation is an opportunity that doesn’t come around very often. If it is done right, universal health coverage has the potential to transform disability in America in a way we haven’t seen since the ADA was signed. Making sure whatever comes next addresses the needs of the disability community won’t be easy, but what else is new?

Resources
• CCD Disability Principles for Inclusion of Long-Term Services and Supports in Universal Health Care, c-c-d.org/fichiers/CCD-Principles-LTSS-in-UHC_Sign-On_8-20-18_FINAL.pdf
• “The Disability Trap,” nytimes.com/2018/07/24/opinion/disability-trap-state-medicaid.html