I’ve been writing a lot about the Medicaid expansion under the Affordable Care Act, mainly from the perspective of Medicaid as a route to health insurance for low-income US residents. As a recent Wonkblog post from University of Chicago professor Harold Pollack reminded me, though, Medicaid is also an essential source of care for people who require long-term care — or, in Medicaid language “long-term services and support (LTSS)” — due to disabling conditions. When a person needs daily assistance with routine tasks, the costs can quickly eat up a family’s income and savings, so Medicaid is a much-needed safety net to cover expenses for institutional or in-home care. Nearly half of all Medicaid spending goes to LTSS users, even though they account for about six percent of Medicaid enrollees.

In order to qualify for these Medicaid benefits, Pollack notes, adults who need the services must live below a strict asset limit:

Medicaid does have one huge flaw, which hurts millions of people living with disabilities, injuries, or chronic illness. You have to live, officially at least, as a pauper. With important variations across the states, most recipients are forbidden from having more than two or three thousand dollars in the bank.

You can generally keep your house or your car. That’s pretty much it. You can’t have that emergency fund on hand in case the muffler or the furnace breaks. And what about the stuff Medicaid doesn’t cover? It’s nice to get your teeth cleaned or just to buy a Big Mac every once in awhile. Because of such means-testing, that new mother is forbidden from setting any money aside for her child’s education. That food services worker living with intellectual disabilities can’t save up for a nice vacation.

The good news, Pollack reports, is that bipartisan legislation introduced in both the House and Senate — the Achieving a Better Life Experience (ABLE) Act — would allow people living with disabilities to establish accounts (like the 529 educational savings accounts) that can be used for “educational expenses, housing, transportation, assistive technologies, and other basic needs.”

As Pollack points out, any one of us could experience a car accident or a disease that leaves us dependent on daily assistance, or have a child with a genetic condition that will require a lifetime of resource-intensive care. It’s good that Medicaid provides a safety net, but it seems unnecessarily punishing to require that beneficiaries have so little savings to pay for things most of us take for granted.

Another reason why we need a strong safety net to cover LTSS costs as well as more flexible rules for beneficiaries’ income and assets is that the families of the people living with disabilities bear much of the burden of inadequate policies. “Most family caregivers are willing to provide care for their family members and friends, but the caregiving experience can be very demanding, leading to undesirable outcomes such as chronic stress or financial strain,” notes this Kaiser Family Foundation summary of key facts on LTSS. Family caregivers, nearly half of whom have incomes of under $50,000 per year, may also end up helping out with things that Medicaid beneficiaries can’t afford because of the limits on how much money they can have in their bank accounts.

I hope that the ABLES Act passes, and that we see some positive results from the current projects (some created by the Affordable Care Act) to improve delivery of high-quality, cost-effective care for people living with disabilities.