What Is Medicaid? What Are Waivers?

What Is Medicaid? What Are Waivers?

A Medicaid Policy Wonk Explains

Medicaid stuff is my specialty. While I’m a political junkie who tries to glean deep knowledge of American political ideas on all sides on nearly every issue and the philosophies that underpin them, and, while in a year of intense study, I’ve gained a great deal of Judaic knowledge, my area of expertise is still disability rights and Medicaid, and I have more study and hands-on experience in this area than in any other. A solid case could be made that, though it’s hard to resist diving into the issue-of-the-day, I should shut up on other issues and focus on what I really am: a Medicaid policy wonk. 🙂

I want to explain to my readers what Medicaid is, and what Medicaid waivers are, because these are complex issues most legislators don’t even understand, much less the media, but are very critical to our most vunerable citizens.

Medicaid, along with Medicare, was amended to the Social Security system in 1965 as part of President Lyndon Johnson’s “Great Society” program, which sought to complete FDR’s “New Deal,” and finish something that had been sorely needed, and on the table forever: publicly-funded health care for “the indigent.” Medicare provides some limited hospital, nursing home, doctor, and now prescription drug coverage, among other things, for the elderly and disabled adults. Medicaid covers children and any other citizen who can’t afford medical bills, and it, unlike the purely federal Medicare, is administered by the states, so it varies widely from state to state. The federal judge who heard my case back in 2003 said Medicaid is the most confusing law he’s ever read in his long career in law. He’s right. I’ve read it, and it is an incredible labyrinth of half measures, carrots and sticks to compel states to provide coverage for nearly everything while in the next section providing microscopic loopholes so that the law doesn’t iron-clad force states to. Medicaid law painfully tip-toes a tightrope between federal mandates and violating states’ rights.

But what I want to address here is one of the most important roles that falls to state Medicaids, long-term care, especially what I’ve mentioned before, home care vs. nursing home and the institutional bias in Medicaid.

When Medicaid was established in it only allowed those with incredibly low incomes to participate, and few states provided home care at all. In the 80s the case of a young girl with a trach named Katie Beckett who was stuck in the hospital because Medicaid wouldn’t pay for home care was brought to the attention of Ronald Reagan. Everyone knew the situation was wrong. She was trapped in ICU, which was incredibly expensive, and it didn’t allow her to be with her family and thrive in the community. Her parents made too much money to even qualify for Medicaid. The Reagan administration recognized this and created a framework for home care waivers under Medicaid. The Katie Beckett waivers allow states who didn’t already provide home care to make exceptions (or “waive” typical rules) and provide home care by looking at the child’s income (nothing) not the parent’s income. Thus, a generation of severely disabled children got to qualify to live with their parents and get proper care. If Katie’s parents, and later Katie, hadn’t raised holy hell all the way up to the oval office, we wouldn’t have had ANY home care in most states for a lonnnnng time.

Katie Beckett herself emailed me once to congratulate me on my Crusade. She was a college student then in Iowa, walking around and fully included, when, as a baby, the establishment wanted to let her rot in the hospital forever. She was pretty cool. But she is busy now and doesn’t do tons of advocacy.

Anyhow, this is what waivers are, states “waiving” normal Medicaid rules (often waiving the rule that you must provide a given service to everyone) so they can provide additional services (like home care) to a specific population; in the program that I won in Alabama, the waiver provides home care only to those on ventilators, restricted to about 6 people. There’s another waiver only for those with HIV, implemented right after mine, possibly with my momentum. Every state has waiver programs for people with mental disabilities. Some states have waivers for diabetics, or only for a geographic area. I heard South Dakota created a waiver for only one dude. With the waiver system, state Medicaids can waive rules and provide as many or as little services as they want, to whomever they want, and get federal matching funds for it. And though they love to pass the buck to the feds, the feds have never denied a state’s request for a waiver. In the case of “Katie Beckett waiver” it means either a state’s home care waiver that allows children to be eligible under their income, or the underpinning federal law set up by the Reagan administration that allows states to look at the child’s income for eligibility. Every state, even Alabama with its third-world conditions, has a home care waiver or “Katie Beckett waiver” of some sort. Because of this federal mandate, children under 21 from middle class income brackets can qualify for EPSDT, (Medicaid’s federally mandated Early, Periodic, Screening, Diagnosis and Treatment program). But once the Medicaid recepient is an adult, there is zero mandate to provide them home care, and countless Americans have been given no choice but a nursing home. This is what spurred my successful campaign to force Alabama Medicaid to extend care past age 21 for a few people on ventilators.

But segregating people in institutions is a mandatory service the feds make state Medicaids provide, home care is still not mandatory for states. Though all states do provide home care on different levels, this “instutional bias” continues to limit home care options and create MASSIVE injustice.

As John F. Kennedy said in West Berlin, “freedom is indivisible, and when one man is enslaved, all are not free.” This echoes the classic Jewish idea of the oneness of humanity and our collective responsibility for social justice, which most Christians are exposed to through Jesus’ teachings, especially Catholics.

Of course the way Alabama and most states currently have it set up, most people don’t have the home care they need. Alabama’s policies have resulted in deaths, but also the policies of many other states. Alabama is definitely not alone. You’ve got states from Texas to Virginia lining up in the hall of shame. I don’t have any numbers, but I have plenty of stomach-rending personal stories. I lost my oldest childhood friend because his care got cut off at age 21 (story).

There’s a movement now to make home care mandatory under Medicaid, not only waivered, and that’s what MiCASSA, the legislation disability rights activists have been championing for a decade, does.

To say community works is like saying AIR WORKS! We all use it! We should not have to have a freaking special waiver just to have care in our community. It’s backwards. You should need a special waiver to be segregated in an institution, not just to live at home with the help you need. Community must be available to all. The civil right to live, work and play in the community among family and friends regardless of color, religion or disability, should be provided by states no matter what.


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Health care and Disability Rights