Broken eyeglasses and the sheer weirdness of family caregiving

Broken eyeglasses underscore the weird challenge of caring for a disabled person.

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.

Author: Harold Pollack

Harold Pollack is Helen Ross Professor of Social Service Administration at the University of Chicago. He has served on three expert committees of the National Academies of Science. His recent research appears in such journals as Addiction, Journal of the American Medical Association, and American Journal of Public Health. He writes regularly on HIV prevention, crime and drug policy, health reform, and disability policy for American Prospect, tnr.com, and other news outlets. His essay, "Lessons from an Emergency Room Nightmare" was selected for the collection The Best American Medical Writing, 2009. He recently participated, with zero critical acclaim, in the University of Chicago's annual Latke-Hamentaschen debate.

7 thoughts on “Broken eyeglasses and the sheer weirdness of family caregiving”

  1. Amen. Nobody who has not done this can possibly imagine how hard you work to stay in the same place, or how little help you get from the social welfare bureaucracy.

    In fact, almost everyone who wants to "help" you adds their own tasklist of things you must do- for no assured result. The community sees a reassuring list of agencies to provide help, but what you see is a list of tasks you must perform to establish that the help offered does not, in your actual case, help. All of this, of course, is piled on top of a day that was already full of work that needs to be done, such as dressing, eating, bathing, etc.

    It does seem funny, sometimes, in a very dark subset of humor. One day, after dealing with the system for about four years, while taking a cab to a meeting with an administrator (our responsibility, of course, to figure out transportation to the meeting) we met our first person who actually had a degree in social work.

    He was driving our cab.

  2. Obviously this is almost willfully ignoring the main point of the piece–'next month it will be something else,' etc.–but might it help if you were buying discount glasses online for Vincent? I just purchased two pairs for $85 total (39dollarglasses.com); I then learned a week later that goggles4u.com has even cheaper ones ($29.99 shipped). I know I'm sounding like a spambot here, but I'm reasonably happy with mine, and some commenters at Unfogged were happy with their g4u.com purchases…

  3. It's ironic that many of the glibertarians who unthinkingly support "means-testing of benefits" will emphatically say that among their core beliefs are that "incentives matter" and that "we must encourage people to save". Of course, means-testing of benefits results in a huge effective marginal tax rate, and a huge disincentive for savings. But it's not in the glibertarian style to think about these issues long enough to make these connections.

  4. Here in Pennsylvania we have the same fiscal issues. It takes years to get intellectually disabled persons into group homes unless there is a placement emergency such as the death of the custodial parents.

    Helping people with intellectual and developmental disabilities is a low priority because the population is invisible. When there's a pothole on the street, or you wait two hours to get your driver's license renewed, you can see the inefficiency of the State in action. This is the kind of thing state legislators jump on. Their jobs depend on getting these things fixed. But when a 30 year old autistic man sits at home with no services, nobody sees anything and nobody does anything about it.

    The real difference between the left and the right is this: Progressives see these problems and want to do something about it. Conservatives see these problems and yell, "Don't raise my taxes!"

  5. These people usually do not vote. There are 2 sub-classes of people in the USA , registered voters, and everyone else. "Governments are judged by how they treat the disabled, young, and old".

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