I was emailing a friend about what it’s like to have significant family care giving responsibilities. Some realities are hard to convey. Of these, the relentlessness and the open-endedness of the task are by-far the most important. You need to live it to appreciate it. In our case, the grinding daily challenges lessened when Vincent moved into a nearby group home. Beyond this, the sheer comedy and strangeness of what comes up is also striking. I recently cross-posted the below item at Huffington Post to readers there a flavor of the challenge. I think RBC’s policy audience would read the same essay quite differently. In any event, here it is.
Some months ago, the residents in my brother-in-law Vincent’s group home all received eye exams. Several received glasses. Vincent did, too. I don’t know whether he really needed them or just got them to fit in with the other guys. He can’t really communicate what he sees on the eye chart. So his prescription could be wildly wrong. On the other hand, when I asked him what he sees better with his glasses, he responded fairly reasonably: “the sky.” We took him to a university eye doctor, who produced a similar prescription. So who knows….
Vincent loves his glasses. That’s the problem. With a combination of strong, impatient fingers and poor fine motor skills, he destroys many of the physical objects most dear to him. He washes his electric razor and other trinkets that don’t survive being immersed in water. He fingerpaints the pretty drapes in my niece’s playroom. He tears his favorite books and magazines. He’s angry with me because I keep taking him to the Dollar Store when he’s made clear that he really wants an ipod and a cell phone. I won’t buy these for him. He would just destroy them.
He takes on and off the glasses to play with them, to wash them frequently, to open and close or bend them, to feel the texture of the lenses, with predictable results. He’s entitled to two pair per year at Medicaid’s expense. Despite our best efforts, that won’t be enough. Each pair costs about $100. Residents on Social Security or SSI are allowed to keep $50/month in discretionary personal expenses–everything from a trip to McDonald’s to a comb, a lunch box, or a new pair of pants. So $100 is a lot of money in his world.
$100 is not a big deal for us—except strictly-speaking, we aren’t supposed to pay for glasses. It’s not clear that anyone is allowed to pay for them. When Vincent went on Medicaid, we signed an affidavit that we would not pay for medical goods and services for him. He has a special needs trust. That, too, is apparently enjoined from such expenditures. We’ve faced similar dilemmas, for example when we discovered that his standard-issue Medicaid dentist was prescribing prophylactic antibiotics rather than actually cleaning Vincent’s teeth.
In the scheme of things, these are minor problems. For starters, it’s not clear that anyone would know or care whether his teeth are cleaned or whether he actually wears his glasses. On a practical level, we can pretty much do what we want. Still, these bureaucratic challenges exemplify the arbitrary way one contorts to live within the constraints Medicaid imposes.
If you are sufficiently educated and affluent, you address these contortions through a lawyer who specializes in such matters, who prepares the proper paperwork. If you can’t afford that, or you are relatively unsophisticated you turn to a goodhearted but inexperienced personal lawyer, who may or may not do things right. Either way, families spend time and energy attending to such things, worrying about staying within the rules, dealing with bureaucracy and paperwork.
And indeed the day-to-day action items are generally addressed. The teeth usually get cleaned. The glasses are usually replaced or fixed. This presumes that some attentive family member remains in the mix. One of Vincent’s friends expresses the hope that his mom would send him a Christmas card. Does the person being paid $8.75/hr to watch him pay the same degree of care that we do for Vincent? Is anyone available for him to make that extra phone call to fix a problem in his care? Many caregivers would say that this question answers itself.
Our own weird episodes and challenges highlight the catch-22 aspect of means-tested aid. People with disabilities need the ability to save. They need the right to openly hold money to address immediate needs that can’t specifically be foreseen in public policy. They also need the opportunity to pursue a dignified long-term plan. Such planning is constrained by their specific physical and cognitive limitations. It is also constrained by the contours of public aid. In some ways, the more explicit the long-term plan, the more likely it is to run afoul of the letter or the spirit of rules imposed by some program you really need. [These dilemmas provide one reason why elements of health reform such as the CLASS Act are so important, but also so limited. One must be an adult part-time or full-time worker to pay into this system. Some intellectually disabled people can do so. Many, such as Vincent, cannot.]
In some wealthy democracies, the disabled are allowed to establish life development accounts. These assets are not considered in programmatic eligibility for health care and key services. In the U.S., you might be able to do this if you can get by on Social Security and Medicare. It’s much harder if you require Medicaid, as so many people living with serious disabilities do.
The street-level bureaucrats who operate these programs operate pretty day-to-day, too. When case workers make the annual visit to Vincent’s workshop, they seem relieved to find that we don’t ask for scarce services and resources. We sign the papers, and they move on. They do provide lifesaving help in an emergency, but they can’t be proactive. They don’t have the time or the personal relationships they would need to provide active long-term help to more than a fraction of the families they serve. They don’t have the ready services, either. As of July, almost 21,000 children and adults with intellectual disabilities are on Illinois’ Prioritization of Urgency of Need for Services (PUNS) waiting list.
The odd crisis such as broken eyeglasses is also upsetting because it reminds families that their loved one is effectively a pauper. For sure, Vincent gets three square meals a day, medical care, a roof over his head. He and his housemates have private rooms, though this is not assured with looming budget cuts. Those without family help can see a movie, buy a new shirt, or a hamburger. They can’t do all three in the same month. The luckier or the more-connected still must negotiate the modest resources required for a pair of glasses. And that’s the way things will be for the rest of their lives. The lucky ones will retain some relative in tow, so that someone is there over the next 30 or 40 years to notice when there is a problem, and to do whatever else needs to be done.
At this point, caring for Vincent is a pretty easy gig for me. He is gentle and caring. He’s basically healthy. He does not require much help with basic physical activities. Much my own day-to-day involvement consists of taking him to Appleby’s or the toy store. My wife does almost all the heavy lifting, most of the emotional heavy lifting, too. After all, Vincent is her brother. That makes a difference.
Right now the issue is eyeglasses. Next month, it will be something different, hopefully something equally non-catastrophic. As these challenges unfold, I’m often the onlooker, struck by the simple weirdness of what we confront.