Not so compassionate…

During the current fiscal crisis, red states are cutting services to intellectually disabled Americans and their families.

Many Republicans argue that a truly conservative welfare state would focus resources on individuals and families who genuinely require a helping hand, while limiting assistance to claimants who would properly be doing more to help themselves. The compassionate conservative project can claim a few genuine achievements, most notably PEPFAR. On the whole, though, conservative politicians and political majorities are not following through on what honorable figures such as Michael Gerson and Jack Kemp aspired to do.

Consider, as I did today in the New Republic, what’s happening in one arena: that of intellectual and developmental disabilities (I/DD). Continue reading “Not so compassionate…”

“Fright doctors”– the vaccine-autism controversy

My essay on the vaccine-autism controversy came out today in Democracy. If you don’t read Democracy, you should. The list of luminaries on the masthead is quite impressive. I’m grateful to Michael Tomasky and Elbert Ventura for the opportunity to publish in such a terrific place, and for the careful editing.

RBC readers know that I’m quite concerned about the vaccine-autism controversy. First, increasing numbers of Americans are choosing not to vaccinate their kids, thus increasing our collective vulnerability to infectious diseases. (See here for just one example).

Public willingness to accept harmful and groundless theories is equally worrisome. Everyone in the media and the blogosphere need to be careful about spreading claims, however widely and sincerely held, that lack proper scientific support. I think it’s fair to say that we progressives are quick to recognize the danger when the topic is creationism or denial of global warming. We are sometimes slower to recognize, or to call out, other ungrounded thinking closer to home, such as when the normally sound instinct to distrust corporate power and embrace parental autonomy lapses into a closed-minded rejection of the public-health enterprise.

Those of us who care for the disabled have special obligations. Because of our responsibilities and our experiences, we are granted a platform to influence people. Equally important, we influence each other. When caregivers–Jenny McCarthy, for example–use this platform poorly, the results are rather frightening.

At the same time, my own profession needs to ask some hard questions about why hundreds of thousands of people choose to believe such things, in conscious opposition to the consensus of the medical and scientific community. The very crudity of the anti-vaccine movement makes it easy to dismiss populist distrust of medical authority as simple boobishness. Sometimes it is; sometimes not.

Unfounded rumors about vaccines are being debunked. Leading figures who spread these rumors, such as Andrew Wakefield, have been punished. These are good things. Yet as long as families and patients have real experiences which lead them to distrust the medical and public health enterprise, some new appealing and dangerous forms of magical thinking are bound to pop up. That remains a sobering lesson of this sad bit of medical history.

Vaccines and autism: Game and set–but not match until we earn patients’ trust

It’s good to see sane talk about end-of-life care and about the nonlink between vaccines and autism. Yet every day, critically ill patients, families of children with autism, and others have genuine experiences that lead them to distrust and dislike medical authority. As long as this is the reality, there will be a market niche in which peddlers of paranoia and flim-flam will flourish.

On the same day, I saw Mitch Daniels giving interviews saying that we need to confront the high costs of end of life care , and I heard that the British Medical Journal has finally retracted Andrew Wakefield’s notorious vaccine-autism study as fraudulent. Mark Kleiman declares “Game, set, and match,” in response to this news.

These headlines might seem unrelated. I think they are connected. Both headlines are welcome. Yet I fear that both seem like more of a victory for sanity than they will turn out to be. Neither addresses the underlying distrust of organized medicine at the root of both death panel demagoguery and the vaccine scares.

Health reformers, Democrats, Republicans, and independents face many challenges: One of the biggest challenges is to convince ambivalent patients, doctors, nurses, and the broader society to actually embrace comparative effectiveness research, team-based, and evidence-based care. For many reasons, this is genuinely scary for both providers and for patients. Probably the most frightening and divisive way to start this conversation is to focus on rationing or on reducing costs of end-of-life care. There are so many other issues to tackle first–hospital infection, reducing re-admissions among congestive heart failure patients, preventing medical errors and needless back surgeries.

Governor Daniels is relatively rare among prominent Republican these days in his willingness to argue within the reality-based community about policy. Although he is definitely helping by not screaming about death panels, it’s a mistake to bring cost into the end-of-life planning debate when so many other issues of patient comfort and humanity can be productively addressed before cost issues can or should be a central focus in end-of-life care.

As for the Wakefield study, it’s long past time to put the false and destructive thing to rest. Recent measles and pertussis outbreaks underscore the damage that’s been done.

There is still little reason for boasting or complacency.

The only real way to debunk crazy stuff is for the medical and public health community to treat people with the decency, competence, and respect that earns their trust. Too often, this just doesn’t happen. Every day, critically ill patients, families of children with autism, and others have real experiences that lead them to distrust and dislike the authority of scientific medicine. As long as this is the reality, there will be a strong market niche for con artists–and for oppositional figures with more legitimate wares–to flourish. Charlatans such as Wakefield are as much symbols of the medical system’s failure as they are threats to public health. So I’m not celebrating this specific long-overdue debunking as much as I otherwise would.

Game and set—maybe. The match is far from over.

Check out this kid’s video–then donate

Seventh-grader Mike Sabath made this video. Pretty amazing, and for a good cause.

The son of an old high school acquantance made this video.

He’s a 7th grader. If your taste runs more to Dylan or Brahms than to Justin Bieber–well you’re just not the target demographic. Still check it out. He does an amazing job. Then donate.

Sarah Palin, Still Missing in Action

Sarah Palin is everywhere from Time Magazine to the Wall Street Journal to Dancing with the Stars. Yet when it comes to disability policies of critical importance to millions of families facing similar challenges to those facing her, she remains MIA.

Sarah Palin is everywhere. She’s on the cover of this week’s Time magazine. She has a Wall Street Journal op-ed saying silly things about death panels again. She’s got a TV show. Her daughters are on Dancing with the Stars, arguing on Facebook, and whatever. Yet on policy issues of critical importance to her own family and to millions of others, she’s still nowhere to be found.

During the 2008 campaign, she promised to speak about disability policy. To my knowledge, she delivered one speech to endorse full-funding for the Individuals with Disabilities Education Act (IDEA). Politicians who care about something have a way of circling back to it with some message discipline. Palin seems to have dropped the subject. More than once, I have called her out on this issue. Despite my ministrations and her incredible media presence, she remains MIA.

I got angry about this all over again when I read Palin’s new book, America by Heart: Reflections on Family, Faith, and Flag. For all the obvious reasons, this is an easy book to dislike and to lampoon. Her politics and the theology that underlies it are not particularly generous or inclusive. Palin is more impressed by Mitt Romney’s views of religion in politics than she is by John Kennedy’s, and notes Ted Kennedy’s “long career advocating positions directly at odds with his Catholic faith.”

She trashes Hollywood and “liberal feminists,” who are not true mama grizzlies. “In the name of liberating women,” she writes, “modern feminism has wrapped us in a one-size-fits-all straitjacket of political correctness.” She quotes Jonah Goldberg’s Liberal Fascism to slam various Democratic heroes. Her only comment about Planned Parenthood, for example, is that Margaret Sanger entertained unattractive eugenic views.
Continue reading “Sarah Palin, Still Missing in Action”

Reach out and touch someone–especially someone for whom the holidays suck this year

More so than myself, my wife Veronica and her brother Vincent are attached to cherished holiday rituals. Since my in-laws have both passed away, we carry on these rituals in our home.

These rituals provide much joy and not a little sadness. “I lived with Mom,” Vincent remarked out of nowhere. “She died. Now I have my own place.” He can’t convey much about his inner life. He communicates enough to show that the holidays are times of genuine grieving.

His fellow group home residents also have turbulent emotions around the holidays. Some celebrate with close relatives. Others have outlived their caregivers, or have at least outlived these close relationships. This morning, I picked Vincent up for a family trip and Thanksgiving celebration. I chatted with a solitary staff member was preparing a large turkey dinner for several connected home. They will have a nice meal. Yet conditions are Spartan, particularly in these times of fiscal austerity and the state’s nonpayment of its bills. Guys with no close relatives will spend Thanksgiving and Christmas hanging out at home with a skeleton crew. They’ll be safe and well-tended, but probably pretty bored, too.

For many different reasons, in many different ways, the holidays can be hard or sad times for many people. People mourn siblings or parents who are no longer on this earth to celebrate. People mourn broken romances and marriages, too. Career disappointments and economic anxieties can seem especially daunting this time of year. People face physical or mental health concerns, too. Meanwhile, we are commanded to be happy and be grateful and be thankful (and of course to buy lots of stuff) when more ambivalent emotions are likely to take hold.

I don’t mean for this to be a downer post. I myself feel quite blessed this year. Still, not everyone feels the same. This is a good time to reach out and touch someone, to renew a friendship, to lend a helping hand, to share a cup of coffee with someone who doesn’t quite as blessed this holiday season.

Referring disabled people to homeless shelters

More human consequences of the state budget crisis

This is what families are dealing with because of the state budget crisis.

Ken Kusmer of Associated Press has an amazing story noting that some workers at Indiana’s Bureau of Developmental Disabilities Services are telling parents that they might leave a disabled child at a homeless shelter if they can no longer care for the child at home, and if the family hasn’t received Medicaid waivers for alternative services.

It’s unclear how widespread this practice actually is. I can certainly understand where this is coming from. Waiting lists have reached 20,000. Meanwhile, the ARC reports that since July, Indiana has eliminated 2,000 Medicaid waiver slots due to budget cuts.

Such cuts pose a particular problem for individuals who “age out” of services. For example:

Daunna Minnich of Bloomington said Indiana Department of Education funding for residential treatment for her 18-year-old daughter, Sabrina, is due to run out Sunday.

Officials at Damar Services Inc. of Indianapolis have told Minnich that unless she takes Sabrina home to Bloomington, the agency will take her to a homeless shelter.

Minnich said Sabrina, who’s bipolar and has anxiety attacks, has attempted suicide, run away during home visits and threatened her older sister. She said bringing Sabrina home isn’t a viable option, and the two group home placements that BDDS offered weren’t appropriate for Sabrina’s needs.

If things were a bit different, I could see my family in a similar situation. When my brother-in-law was living with us, I once drove him and my young daughters to pick up a friend. Cruising down Lake Shore Drive in Chicago, I spoke sharply to one of my daughters, whom Vincent adores. We argued, and he slapped me while I was driving. It hurt, and it was scary. I pulled into a parking lot in the pouring rain. He and my daughter were sobbing. I remember thinking: I just don’t know how much longer I can really do this. Fortunately, we never had another incident remotely like that ever again. I can imagine families being pushed past the breaking point, summoning the courage to ask for help–only to be told to deposit their loved-one at a homeless shelter.

In part, press stories such as this one reflect the frustration of state workers and service providers, who cannot effectively respond to many families who need help. These stories also reflect the reality that intellectual disability services are getting hammered across the country in the current budget crisis. Intellectual disability services are labor-intensive, costly, and complex. They are not entitlements. Depending on the local politics, they are often more vulnerable than other big-ticket items such as corrections, state universities, or K-12 education.

States can also be very poor customers to the for-profit and non-profit providers who do much of the work. States deny claims for appropriate services, pay too little or too late for services people are entitled to receive. These practices amount to a large and painful, but implicit budget cut which is often invisible to the taxpaying public and to the voters. Illinois is probably the worst culprit. It is not the only one.

In a time of 9.6 percent unemployment, services to the intellectually disabled could offer worthy employment for thousands of people, while providing crucial help to stressed families. Sadly, our political system lacks the organization and the resources at the right levels of government to maintain even the current service levels. I doubt Tuesday’s election will make things better.

Postscript: For more see Dana Goldstein.

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.

Fragile X and the dilemma of newborn genetic screening

My latest American Prospect article explores the dilemma of newborn fragile X screening.

My latest article, in the November issue of the American Prospect, concerns the dilemmas of newborn genetic screening, focusing on fragile X syndrome, the most common heritable form of intellectual disability.

This was a tough piece to write. even more difficult to edit. Fragile X causes an interesting, complicated set of conditions. And these complexities really matter for both clinical interventions and public policy. Whatever you learned in high school or in freshman biology about familiar genetic conditions turns out to be a grossly oversimplified picture of fragile X.

As in the case of sickle cell, supposed “carriers” face characteristic health concerns. People with the same genetic markers display very different impairments and symptoms—including no apparent symptoms at all. Not surprisingly, then, fragile X is frequently overlooked or misdiagnosed. Many families spend thousands of dollars over several years chasing down false leads before proper diagnosis is made. They also have other children during this period of diagnostic uncertainty. For some of the same reasons, a nontrivial proportion of people with fragile X-related conditions are diagnosed through the diagnosis of a younger sibling.

Newborn screening could often prevent this “diagnostic odyssey.” Unfortunately, it raises difficulties and tensions, too. Most people identified through newborn fragile X screening probably derive no immediate benefit from this information—though their parents, siblings, and other relatives might derive important benefits for their own care and their own reproductive planning. Inevitable difficult questions of informed consent and cost-effectiveness arise, too.

Central to this piece is an issue which will recur in many different ways: the large and embarrassing mismatch between our medical care system’s lofty aspirations of high-tech genomic medicine and its everyday capacities to actually use this information to help real people.

Basic issues must be confronted before personalized medicine becomes a useful everyday reality. We continue to pump money into research and advanced treatments for conditions influenced by detectable genetic traits. That’s good. We don’t yet support the everyday patient and provider experiences of genetic screening and care with equal vigor. As a result of this imbalance, advances in genetic science and diagnosis continually raise questions that our medical care system is ill-equipped to answer.

PS: I’ve written many columns over the past several months of the sort “Wall Street Journal writes another misleading editorial about healthcare reform.” I’m not sure this is a great use of my comparative advantage these days. So expect to see more stories like this one, probably less traditional blogging, looking forward.