The Disability Integration Act

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Andrew Pulrang

Disability activists talk all the time about the huge problems we face, stuff that we need, and what we should have the right to do. It’s a rare and exciting thing to also be able to say, “Here’s how!”

The Disability Integration Act, (DIA), is a direct, practical solution to a very specific, very old problem. People with significant physical disabilities often need help from other people to do everyday things like getting out of bed, bathing, dressing, cooking, cleaning, going to the bathroom … all the stuff people do every day, but most people do for themselves. It doesn’t have to be charity, and there’s no need to leave it all to exhausted families. People can be paid to do this work. The problem is:

  1. Most health insurance programs aren’t really set up to fund long term services and support. Only Medicaid really does that. And almost nobody can afford to pay for long term home care out of pocket.
  2. Most insurances, including Medicaid, still rely too much on nursing homes to “take care of” disabled people who need daily help.
  3. Home care and other home-based supports are available, but unevenly, depending on which states or even counties you live in.

If you really, REALLY want to stay in your own home, and you work really, REALLY hard to meet every minute requirement, and you live in the right state and county, you MIGHT be able to maintain your independence and live in your own place. If you DON’T work at it constantly, or if you happen to live in a place where home care is less developed, you’ll eventually end up in a nursing home, drawn in like a magnet. Most disabled people would rather get their help at home, but outdated systems still treat nursing homes as the default, and look at home care as some kind of exotic option, suitable only for a select few.

The Disability Integration Act would be a federal law to address these problems directly, in every state.

  1. It would require both public and private insurances that cover any kind of long term care to give equal coverage to home and community support services, so you could simply choose that option if it’s what you want.
  2. It would require this in every state, so no matter where you live, your right to independence would be the same.
  3. It would, in effect, add teeth to the Supreme Court’s Olmstead decision, which first set out the principle that these services aren’t just benefits, they are the practical embodiment of the right to independence for people with significant disabilities.

As it happens, we’re in the home stretch of a General Election campaign. Every candidate for federal office has the chance to say whether or not they support the DIA. And despite being far from the highest-profile issue, during this election campaign, the DIA has been slowly, quietly gaining support and momentum.

During the primaries, the top two Democratic candidates, Hillary Clinton and Bernie Sanders, both came out in support of the DIA. First, Hillary Clinton gave a positive answer to an audience question from a CDR supporter. Then, after some additional prodding, came out officially in favor of the DIA. Bernie Sanders followed suit, and while his response might have seemed like a copycat move, it’s a great sign that political opponents competed for the privilege of supporting the bill.

Now, 11 House and 9 Senate members, from both major parties, have co-sponsored the DIA. So it’s looking good for the DIA. If anything, it’s strange that so far, the DIA hasn’t become more controversial, or more partisan.

We got a hint of deeper conflicts over the DIA when it it wasn’t included in the original draft of the Democratic Party Platform, and only added at the last minute in the broadest terms, without actually mentioning the bill. It’s possible the DIA raised some internal political conflicts that the platform drafters didn’t want aired in public. In effect, they took it seriously enough to avoid mentioning it.

Meanwhile, the Republican candidate, Donald Trump, has said nothing at all about the DIA. Then again, he’s said almost nothing about disability policy of any kind, so we don’t even know if he or his team knows what the DIA is.

Is this the sort of bill that’s likely to pass with bipartisan support? Do we just need to do patient political groundwork and let the DIA work its way through the process? Or, are there strong technical or ideological conflicts buried deep in the issue that just haven’t fully surfaced yet? Put another way, why wouldn’t a candidate support the DIA, and what can we do to answer objections to it if and when they emerge?

Based on past experience with similar bills in Congress, here are a few arguments we are likely to hear:

  1. The DIA would create another huge government entitlement, an expensive program that would be nearly impossible to curb or eliminate.
  1. It’s another “unfunded mandate” by the Federal government on the states, a law requiring states to spend money without helping them pay for it.
  1. The whole premise is off-base, because many disabled people really need to be in nursing homes and institutions. Or,
  1. If more people choose home care, and nursing homes close as a result, what will become of nursing home workers, most of whom have a tough time making ends meet as it is?

These are the big, ideological arguments. If a candidate’s approach to politics is that government never does anything right, if they’re sure the government already spends too much money on entitlements, or, if they basically think severely disabled people should live in nursing homes and quasi-hospitals where they can be properly “looked after,” then a candidate might honestly oppose the DIA.

That said, these arguments are basically nonsense, built on false premises:

  1. The DIA may cost more in the short term, but it might well end up costing less in the long run. We spend a lot on long term care already … just poorly and out of sync with what people really want.
  1. Letting states do their own thing is overrated, especially in long term care. There’s not a lot of regional difference in people’s disabilities, long term care needs, or preferences. It’s intolerable that our ability to live independently can be totally determined by which state we live in.
  1. Needing help every day with physical tasks, even lots of help, doesn’t mean we need supervision, and there is no reason why nursing home levels of care and support can’t be provided in our own homes. It’s not fundamentally a different service, just a different, much better location. Finally,
  1. Nursing home workers can become home care providers. Again, it’s basically the same work, and the same money, reallocated to a more individualized system. There’s no reason to think that more home care is going to mean mass unemployment for personal care workers.

So, before the campaign is over, ask candidates to support the Disability Integration Act. Thank those who support it already. Press those who haven’t said a word about it to take a stand. And be prepared to answer the objections that are sure to come up, once people realize the Disability Integration Act is more than a dream. It’s a real possibility, one well worth fighting for.

Contact: Andrew Pulrang