(Cross-posted at the Blog of the Century)
My wife is preparing for her brother Vincent’s birthday party tonight. He’s invited maybe fifteen of his friends to a local restaurant. She’s making cupcakes, buying party stuff. Before we are done, the whole thing will cost about $300. It’s a minor indulgence. To tell you the truth, I haven’t given the event or its cost a lot of thought.
Pretty much every guest at this party is an intellectually disabled adult receiving SSI or Social Security assistance. Many receive Food Stamps, too, which are signed over to their group homes. They get three square meals per day, a clean and safe living environment, humane supervision from the staff, occasional recreational activities. They are entitled to keep $50 per month of their cash aid for incidentals. That covers everything from prescription co-pays to a pair of pants, a movie, Sports Illustrated, or a trip to McDonald’s.That’s not an issue for Vincent. Like many other middle-class people, we’ve set up a special needs trust and can otherwise cover a simple birthday party.
Many of his friends, however, have outlived their primary caregivers. Others have just outlived these family relationships. For them, $50/month is all they have. They can’t spend six months of their available cash on cupcakes and a buffet dinner. As a society, we spend a lot of money providing for these men and women in many ways. They still live a Spartan existence. There’s much talk about how states need to do some belt-tightening in their services to the physically and mentally disabled. It’s more than talk. Many states have already cut Medicaid and other services, sometimes absurdly so.
That’s not right. When a guy can’t afford a birthday party, his belt is already pretty tight.
Prescription co-pays are incidentals? Couldn’t that use up the whole $50 for some people? And what is the government doing requiring co-pays in first place? Insurance companies do that to make money (in part, I suppose, by creating a disincentive to use prescribed drugs), but, if the government is paying for these people’s insurance, why doesn’t it pay for all of it?
Good question. There are some reasons to require copays for non-generics and the like. But in many cases, people with no money will simply not fill the prescription. Approaches such as value-based insurance design are valuable to address these concerns.
A few years back, as my grandfather was very slowly dying of congestive heart failure (with excellent medical care and resources), he was sent home with an oxygen generator. I’d never heard of them, and as I was googling them one of the things I read was that in the UK, under the NHS, if you’re sent home with an oxygen generator you’re given a small stipend to pay for its electricity use - because people poor enough that this might be a factor shouldn’t have to decide whether to pay for the electricity that helps them breathe. The cost in this case was very minor, and I don’t even know if the practice has been maintained. But as a philosophical statement it’s something to admire, and it’s a world apart from our world of co-pays and other methods of discouraging the use of necessary medical care.
Something occurs to me reading your post on state services provided to people who could by no stretch of the imagine be considered “undeserving”. As we know, the debate over provision of social services pivots on the question of desert. The intellectually or physically disabled are in a category that seems immune from the prospects of “accountability”; that is, their condition is assumed to be largely unavoidable.
Yet another category of people, those we generally consider the “undeserving”, could be described as emotionally or behaviorally disabled. Thus you have a dichotomy between the intellectual/physical, and the emotional/behavioral. I’m not so sure this is a very productive distinction. There are plenty of people out there who are just as disabled by their psychological problems - mental illness, bad habits, drug addiction - yet who we feel the need to judge as morally inferior. Yet are these not developmental traits? There are chains of psychological causality and learning that are certainly more complex, but no less real than physical or intellectual disabilities. In fact, with many addicts, the disease is very physical. And yet we get calls all the time for denying welfare services to this “undeserving” population. But there is plenty of evidence that emotional or behavioral problems, certain drug addiction, isn’t really avoidable at all. In fact, leaving these people out of the system weakens their support system even further.
You might want to think that everyone would consider those with developmental disabilities “deserving,” but there are people who would say their support is the responsibility of their families or charities, rather than the taxpayer. I haven’t met too many like that in my eleven years (so far) as a parent of a child w/dd, but I have met a few.
Interesting comments. In my own work and life, I find that people indeed have especially compassionate views towards the intellectually disabled. Yet the cost and complexity of these services leads to some basic ideological decisions regarding the size of government. Red states spend less per $ of state income, and have cut more during recessions. See http://www.tnr.com/blog/jonathan-cohn/90557/developmental-disabilities-states-obama
How many of those disabilities are congenital? I’m wondering what will happen in future generations where genetic counseling and prenatal testing reduce the population of people with some kinds of disabilities, reducing the number of people who need care but also reducing the number of people to advocate for them.
This is certainly an issue in the Down’s community. But there are also many DDs for which this will probably never be an issue. Autism, for example — too many different genes involved, and a dash of autism may be very related to important skill sets (e.g., Temple Grandin’s theory that someone with autism discovered how to build a fire while everyone else was busy socializing).
There are many fairly rare DDs and I’m guessing it wouldn’t be worth it to test everyone for everything. And there’s no way of telling who is going to end up with a traumatic brain injury (TBI during childhood counts as a DD) or lead poisoning (a cause of post-natal intellectual disability).
So no, we’re not going to go away.