The Misunderstood Medicaid Program Behind the Disability “Die In”

A Simple Explanation of Medicaid Home and Community-Based Services

Watching coverage of ADAPT’s “die-in” in front of Sen. McConnell’s office yesterday, it seemed a lot of people were a bit confused about what, exactly, the people on the screen getting dragged out of their wheelchairs were protesting. They were opposed to the Senate health care bill because… something about Medicaid cuts?

In their statements and interviews, protesters mentioned a specific, and widely misunderstood, set of Medicaid services that many seniors and people with disabilities rely upon to live independently.

Medicaid policy can get really complicated, so here is my best attempt at a simple explanation.

When most people think about health care, they think about doctors and hospitals and tests and meds. But what if you are getting older and you need help with daily tasks like bathing and cooking? Or you live with a physical disability and need help getting out of bed and getting dressed for work in the morning? Or you have an intellectual disability and need a little help with a variety of daily tasks?

If you need these kinds of “non-medical” services, you generally have a few options:

  1. get services from informal caregivers (usually family)
  2. pay out of pocket (this usually requires a lot of money)
  3. live in a nursing home
  4. try to get services from community providers

Insurance and Medicare don’t cover the last two options, so if you don’t have a lot of money or family/friends able to help, then Medicaid is probably your only option.

The cost of Medicaid is shared between the federal government and states. Imagine that the federal government is a mom and her teenage son, who works a few hours a week after-school, is a state. At the end of every month, Mom looks at how much her son spends on gas and pays him 60% of the total cost. This is (very roughly) how Medicaid works now. If he drives more, he gets more gas money, if he drives less he gets less.

Suppose Mom decides that she’s going to try something different. Last month she paid him $200 for gas, so from now on she’s going to pay $200 a month no matter how much gas he uses. Think of this as the Medicaid proposal in the House and Senate health care bills. Right now, a state is reimbursed for any given Medicaid recipient based on how much that person’s care actually cost. The American Health Care Act would give states a set amount per Medicaid recipient, regardless of how much that person’s care cost in a given year. As with all health care policy, the actual structure is more complicated, but this is the general idea.

Now let’s imagine that gas inflation is totally out of control. To account for this, Mom has agreed to increase the gas allowance by 5% each month. But when her daughter (the Congressional Budget Office in this tortured metaphor) researches gas prices, she discovers that gas prices have actually been going up an average of 10% a month. So even if her son gets the same amount of gas each month, he still has to pay more and more of the bill with each passing month.

When people talk about the House bill cutting $800 billion from Medicaid over 10 years, this is how the Congressional Budget Office thinks a lot of the cuts will happen. Each year, the average cost of caring for a Medicaid recipient will grow at a faster rate than the federal government will increase its per person reimbursement to the state. As a result, each year, states will have to pay more and more of the Medicaid bill to maintain the same services.

Before I continue, there’s something important you should know about Medicaid. It treats services like help with daily tasks differently depending on where they are provided. Medicaid requires states to pay for nursing home care but leaves it up to the state to decide whether they will offer similar services in the community. To get services outside of an institution, you need a “waiver.” Depending on the state, getting a waiver could involve getting on a years-long waiting list, but once you’re off the waiting list, you can get services while staying in the community.

Okay, back to our mother and son. After a year, the son is running out of money. First, he cuts back on other expenses, but eventually he has to make some tough choices to get his gas bill down. Going to work and school are mandatory, so he can’t axe those. But he could stop driving across town to the food bank he volunteers at…

States routinely face tight budgets, and they can’t borrow money to fund services the same way the federal government can. What disability advocates fear is that if states are forced to pay a larger and larger share of Medicaid costs, they too, will have to make some really tough choices.

Right now, because of the percentage system, states get more money from the federal government if they choose to offer waivers for home and community-based services. Under the congressional proposals, states will get the same amount of money per person whether they offer the waiver or not. Advocates worry that as states start getting desperate to make up for federal cuts to Medicaid, they will have every incentive to put waivers for community services near the top of their list of services to cut.

For the many people with disabilities and seniors living in the community right now, losing their waiver could mean giving up their independence, their homes, and their communities and moving into a nursing home.

This might explain why yesterday’s ADAPT protesters were so willing to be arrested to make a point. They would say they’re fighting for their lives.

Note: Any thoughts, views, interpretations, awkward metaphors etc. are my own.