Disability policy and the presidential candidates

By Kathy G.

Over at Crooked Timber, Michael Bérubé has an excellent post up which looks at the disability policies of the presidential candidates. What's the bottom line?

-- Hillary Clinton's disability policy? Very, very good.

-- Barack Obama's disability policy? Even better!

-- John McCain's disability policy? Complete and utter craptastic-ness.

As Bérubé notes, disability policy encompasses a broad range of issues that are not normal thought of as disability. SCHIP, the health insurance program for children that Bush vetoed? That's disability. Veterans returning home from the Iraq War with post-traumatic stress or brain injuries? That's disability. Employees being illegally fired because they take time off work to care for their disabled loved ones? That's disability. Employers and insurers discriminating on the basis of genetic information? Also disability. Medicare? To a great extent, that's disability too, because a substantial part of Medicare's budget goes toward treating seniors who become disabled (as people often do when age). As Michael says, "The subject is disability, people.  It’s about our common frailty and vulnerability.  Get used to it."

Disability policy as such is not the kind of thing you're likely to hear very much about this election season. The mainstream media will not report on it. You won't hear the candidates questioned on this issue during the debates. Yet it is a subject of profound importance to millions of Americans. And it's a great example of why which party controls the White House is a huge freaking deal. 

Unlike the Republicans, the Democrats do not believe that the sole purpose of government is to enrich themselves and their friends. Unlike the Republicans, the Democrats will not appoint soulless hacks who will do everything in their power to destroy the agencies they work for. Because in general, the Democrats actually care about issues like disability. They believe that the whole point of the government is to help people and to solve problems, and they will appoint dedicated, highly qualified public servants to carry out these tasks.

I have a longstanding interest in disability issues. My first job out of college was as a caseworker for people with developmental disabilities, and later I worked for disability advocacy group. One of the most important things I learned from being a caseworker is that when it comes to disability policy, it is truly all about the benjamins. We know what works, and there are a lot of terrific programs and services out there, but the problem is that they tend to be severely underfunded.

This is especially the case with programs for people with developmental disabilities (e.g., mental retardation, autism, and the like). For this population, early intervention programs are crucial, as are other therapy and education programs. And these programs, especially early intervention, have profound, and strongly positive, effects. People with developmental disabilities are in far better health, are living longer, are achieving more, and are living productive lives to a far greater extent than was ever thought possible even a few decades ago. It's kind of miraculous, actually. And it is all because of the government.

But getting the right kind of education, training, and therapy at the right time is crucial. And that's where the problems begin, because these programs tend to be chronically underfunded. Many of them have very long wait lists. When I was a caseworker, this drove me nuts. The families I dealt with -- all of them poor or at least low-income (it was a Medicaid-funded program), most of them single parent families headed by women -- would frequently feel overwhelmed by the stress of caring for a developmentally disabled family member.

Something like an early learning program, an afterschool program, summer camp, a home care attendant, a program that teaches independent living skills, and program that transitions kids from school to work -- those things could make all the difference in the world to these families. The moms would call me sometimes, tearful and desperate for help, and it would just kill me to have to say sorry but no, your kid is on the wait list for the only appropriate program for which she qualifies, they won't let me bump her up in line, and there's nothing more I can do.

Knowing that the right programs were out there, but that they weren't being funded at the appropriate levels, was downright infuriating. Crazymaking, in fact.  And that's what eventually drove me out of the profession. I came to the conclusion that what I, as a single person working within a very screwed up system, could do was extremely limited. I thought I could do more good in the world if I focused my efforts on the policy and politics end up of things, and that's where I've been ever since.

If we elect a President Hillary or a President Obama, the lives of millions of disabled people and their families are likely to be substantially improved. For example, both candidates favor greatly expanded access to health care, initiatives to increase the employment of people with disabilities, and full funding for IDEA, the Individuals with Disabilities Education Act. Obama's plans go a bit further, though -- he's proposing $10 billion for early intervention programs for kids with special needs, as well as a study to determine how to do a better job of transitioning disabled teens to higher education and employment (which, btw, is a huge issue, and one of the areas where the system often fails).

Oh, and what is McCain's disability policy? In short: nothin'. Or, as Michael summarizes it: "(a): we need to cut costs; and, following from (a), (b): don’t become disabled."

There's one other aspect of the disability issue that I want to emphasize: disability is a feminist issue. The reason for this is that the caregivers of disabled people -- be they the parent of a special needs kid or the adult child of an elderly person who has become disabled -- are overwhelmingly female. This was almost always the case with the families I worked with. Life was hard for the mothers of those special needs kids. They worked thankless, low-wage jobs, and most were single parents. Often times, the partner or husband who had fathered their kid bailed because he couldn't deal with the kid's disability.

The stress and difficulty of parenting a special needs kid can be overwhelming, especially if you're a poor single mother That's why help from the rest of society, in the form of government-funded programs, can be a lifesaver. Respite care programs, in which a worker visits the home to care for a disabled child, can be a godsend, enabling the mother to have a few precious hours to herself for once. Programs that teach daily living skills can help special needs kids become more independent, which eases the exhausting, day-in-day-out care (dressing, feeding and the like) which tends to be the mother's responsibility. Programs that help a special needs kid transition to work and prepare her for independent living can spare the mother the anguish of worrying, what will happen to my kid when I'm gone and there's no one left to take care of her?

A Democratic president will ease the heavy burdens borne by the moms of special needs kids. And of course will make the kids' lives easier, more productive, and more fulfilling, as well.

For a Republican president, however, cutting taxes and leaving more money in the pockets of corporations and the rich will be a far greater priority.

It's that simple, people.

Comments

[Lila Klausman]

This needed to be said! We are parents of a son with Downs Syndrome and autism. What concerns us now is his care when we are gone. Funding is being drastically cut for group homes, family supports are also cut back and our loved ones are restricted in their choice of residential arrangements by rules that will not allow them to live next to or near each other in a community setting. The state claims that their program of independent supported living is the one size that fits all. Hopefully, a democratic president will understand the plight of our most vulnerable and dependent citizens and suppport alternative programs suited to their needs -- with the funding that will make it possible, of course!

Gene

[arbitrista]

Kathy, have you read Martha Nussbaum's new book "Frontiers of Justice"? She's an outstanding philosopher of feminism (I hate to use the term "feminist philosopher" - it seems degrading), but a large portion of this book is focused on the disabled. It's on my to-read shelf but I haven't had the chance to read it yet.

[Michael Bérubé]

Thanks, Kathy! And I was just teaching Frontiers of Justice, as it happens. It's quite wonderful -- a rigorous and searching revision of Rawlsian social contract theory that corrects for Rawls' inability to account for disability in the Original Position without giving up on the liberal project altogether. Though I have to acknowledge that my son Jamie is cited in the index more than twice as often as I am.

[Maud]

Thanks for posting on this. Disability issues aren't on most political bloggers agendas. Most people tend to think of the disabled as a small, preferably theoretical group of people over there somewhere, if they think of us at all. Recognizing that being not-disabled may be a temporary condition is uncomfortable.

But Berube's pointing out the stark differences between Obama's and Clinton's disability policies and, on the other hand, McCain's non-policy is vital. These are the kinds of issues overlooked by those threatening "if my candidate is robbed of the nomination I'm voting for McCain or staying home." We often feel reluctant to reward any Democratic politician for the cowardly, self-serving behavior that is routine. But even as we continue trying to push the party toward decency on the more widely-recognized issues, we can't overlook the crucial differences to many people's lives which are made in areas like disability policy, judicial appointments, and the like.

In particular, I hear from so many Obama supporters, who are so largely young and (ironically) relatively privileged, the idea that defeating Hillary Clinton, or the Clintons, has become their overriding aim. Or people feel that if the process itself becomes, in their view, too corrupt, then they will not sully themselves by participating in it. If they can't put the world to rights, why is it worth their effort?

Well, this is why. Because some people's well-being lies in the small difference between self-serving Republican politicians and self-serving Democratic politicians. It may not feel as good to elect politicians you could never fall in love with, but that's who creates and carries out governmental policy.

[serial catowner]

Nice to see someone post on this issue. I've been a (male) RN for 25 years, all of that time spent dealing with disability issues. My wife is totally disabled and in a nursing home.

Unfortunately, while a Democratic president might try to appoint good people, at the local level, in Washington State, an arguably Democratic state, exists what I can only describe as a form of gangsterism. In my local area the Area Agency on Aging is run by a bureaucrat who is allowed to do what he likes, as long as he produces the budget results desired by the state DSHS. Clients are denied the aid they are entitled to and die as a result. Disagree with the director of the AAA, and you stop working- there is simply no alternate employer in the rural regions.

The courts are even worse, and I have often wondered why people so denuded of any protection of law don't simply kill each other in much greater numbers than we do.

I wish I could be more hopeful about a Democratic president, but even the brightest day of the Clinton plan didn't have anything to help my disabled wife, or me, working full-time and paying caregivers with the money I earned.

Naturally there are good reasons to elect a Democratic president, but in a basic sense we need much more realization that that which is done unto the least among us, is done unto me.