The Americans with Disabilities Act at 25

My conversation with University of Michigan Law Professor Sam Bagenstos. From 2009 to 2011, he was a political appointee in the U.S. Department of Justice, where he served as the principal deputy assistant attorney general for civil rights, where he headed Obama administration’s disability enforcement efforts.

We had a great conversation about the often-unsung heroes of the disability rights movement, why Jerry Lewis isn’t one of these heroes, why smartphones don’t have to accessible to people with vision or hearing disorders, what ADA accomplished and failed to accomplish in America.

It was great to do this bloggingheads via Skype. We could actually see and interact with each other.


Rand Paul’s empathy deficit

Rand Paul, who wants to be President, enjoys laughing at people with permanent, crippling pain.

Of course there is room for legitimate debate about the standards for granting disability payments under Social Security. But Rand Paul’s laughing comments about the problem reflect less a political orientation than a moral failing.

The audio on the tracker tape

is hard to decipher; Michael Hilzik makes it out as:

The thing is that all of these programs, there’s always somebody who’s deserving, everybody in this room knows somebody who’s gaming the system. I tell people that if you look like me and you hop out of your truck, you shouldn’t be getting a disability check. Over half the people on disability are either anxious or their back hurts. Join the club. Who doesn’t get up a little anxious for work every day and their back hurts? Everyone over 40 has a back pain.

Jeremy Diamond at CNN points out that “over half” is absurdly contrary to the actual numbers: all the psychiatric diagnoses and all the musculosketal disorders added together don’t account for half the Social Security Disability caseload, and anxiety is a small part of the psychiatric caseload while back pain is a small part of the musculoskeletal caseload. Hilzik also shows the sort of anxiety and back disease that qualify for disability payments have nothing to do with routine pre-work jitters or backache.

The definition of disability for Social Security purposes is twofold:

1. The claimant must have a medical condition that severely limits his or her capacity do “basic work activities” including “walking, sitting, and remembering” that will either last more than a year or terminate in death.

2. The impairment must be such that the claimant is unable not only to perform his own job but any other job: a construction worker who loses an arm isn’t “disabled” if, for example, he could work as a call center operator or Wal-Mart greeter.

So the Senator either doesn’t know what he’s talking about, or is simply making stuff up, in the great tradition of Ronald Reagan’s “welfare queen” story.

But the affect is even scarier than the words. Rand Paul, who would like to have his finger on the nuclear trigger, thinks that people crippled by pain or psychiatric illness are funny. and he manages to get a laugh from the heartless crowd he’s addressing.

Not being a psychiatrist, and not having examined the Senator personally, I’m not qualified to make a diagnosis, but here’s Wikipedia’s definition of narcissistic personality disorder.

People who are diagnosed with a narcissistic personality disorder are characterized by exaggerated feelings of self-importance. They have a sense of entitlement and demonstrate grandiosity in their beliefs and behavior. They have a strong need for admiration, but lack feelings of empathy.

 [emphasis added]

Sound like anyone you’ve heard of?

The political game here is obvious. The new Republican rules will forbid the Social Security trustees to make what would otherwise be a routine transfer from the Old Age Insurance fund to the Disability Insurance fund when the latter runs dry next year. The goal is to set up a battle between (richer, whiter) retirees and (poorer, darker) people with disabilities.

In answer to a question asked long ago to another Republican Senator: No. even at long last, Rand Paul has no shame at all.

Footnote Yes, I take this personally. For years I had the sort of back disease (spinal stenosis) which meant I had to decide every day between having a manageable level of pain and being mentally sharp. And that wasn’t nearly the level of problem that would qualify for Social Security disability. So, unlike the Senator from Aynrandistan, I have a bit of a grasp of what the people who are disabled by degenerative spinal disease have to go through. At the risk of sounding like a humorless liberal, it’s not funny.

Arlene Pollack’s response to Zeke Emanuel on aging

Zeke Emanuel attracted widespread attention with his piece, “Why I hope to die at 75.” I wrote a response to Zeke’s piece at the Washington Post here. My stepmother Arlene had a better response, part of which was published in the Atlantic Monthly as well. They edited for reasons of space. I believe her response is worth including in-full:

People like us, octogenarians, who despite an onslaught of medical issues requiring ultra frequent medical appointments, frequent procedures, tests for suspected problems, and all sorts of treatments to manage the aforesaid, are moving along, having grown more understanding of our fellow elderly, more grateful for the love and companionship of our mates, more determined to remain deeply involved in the lives of each and every family member, and determined to set an example, as far as possible, for our children and grandchildren of how to age in such a way that we don’t leave our loved ones with a dread of incapacity, a horror of diminishment of vitality.  If we were to suddenly fall off the face of the Earth, after withdrawing from their lives and obsessing about our states of health, they would never be prepared for their own late lives. That would be not only cruel, but irresponsible as well.

We live in an area where almost all the people we see or meet or call friends have had to adopt this sort of philosophy as they deal daily with hearing aids, dental devices, crutches, walkers, braces, and cosmetic and aesthetic adjustments.  Most come to incorporate these inconveniences and move on, attending to keeping muscles and intellect optimally functioning. Their children and grandchildren then adjust to these changes as well.  In this way, we all can live with an understanding that life is a matter of loving, sharing, living to the fullest.  It’s a legacy, a gift that is worth far more than sums of money or great public and personal achievement.

I understand that we cannot anticipate what will befall us, how we may not be able to fulfill this goal, but having this positive philosophy brings a certain peace of mind, allaying debilitating terror that incapacitates and hardens us so that we withdraw from those who need us in so many ways.

Just a beautiful piece of writing. She leaves both Zeke and I me in the dust on this one.

Medicare’s ‘improve or you’re out’ rehab policy

I have been meaning to write about the important court order overturning Medicare’s longstanding ‘improve or you’re out’ (of Medicare financed SNF and/or home health) policy for rehabilitation services. Basically, beneficiaries who had plateaued and could at best maintain function could not receive rehab services under these parts of the Medicare benefit package. Medicare has settled the court ruling with plaintiffs to expand the availability of these services, even to patients who cannot show improvement, but only maintenance of function. Several quick points:

  • While this issue has long been on the radar of elder/disability advocates, it never made it into the popular culture as a political issue. Why? I think it is related to the fact that long term care and disability are the underside of the health care system and people don’t like to think about needing rehab just to be able to maintain their ability to swallow, for example. Not an attractive thought.
  • Imagine if Medicare announced that chemotherapy X to treat Cancer Y would only be paid for if you could prove it was extending your life. The internet and the health policy meets political corner of twitter would break. We turn in horror from looking at long term care, but run toward the potential denial of a curative therapy and have a group freak out (sorta like ‘rubber-necking’ at a bad car wreck).
  • It doesn’t bother me and I even like the fact that the question of ‘can/is this person benefiting?’ from rehab services is being asked. It is a policy question as to whether such care should be required to bring about improvement, or simply to maintain function. I think the case has now been rightly decided toward expansiveness of these services. However, the same type of bright lights (does it extend life, improve function, how much does it cost?) should be asked of the entirety of the Medicare program. Not just the parts no one likes to think about.

cross posted at freeforall

What’s next for disability and long-term care?

I had the chance to interview the Urban Institute’s Howard Gleckman, one of the nation’s leading experts on disability policy and long-term care.

I had the chance to interview the Urban Institute’s Howard Gleckman, one of the nation’s leading experts on disability policy and long-term care. The small piece below gives a flavor of things.

Pollack: So what’s next? Now that CLASS has failed. Is there anything that’s going to come in its place?

Gleckman:  The fiscal cliff law does create a new commission which is tasked to come up with a solution to the financing problem, and also to address delivery and workforce issues….

We haven’t really done a good review of long-term care policies since the Pepper commission in 1990. It’s absolutely time that we do it again.

But this commission will be hamstrung by a very short time frame. Its members must be appointed within 30 days. The commission has to make its recommendations within six months after that. I honestly don’t think it’s possible to perform a serious review and deliver a set of serious proposals in six months.

It’s also concerning that this commission is not connected to any federal agency. Normally, you would think that something like this would have some connection with the Department of Health and Human Services, but it’s not. It’s floating around out there with no bureaucratic home.

There is also no requirement that Congress actually vote on any of these recommendations. The Commission is required to submit its recommendations in six months but Congress could ignore them. I don’t know where that leaves us.

Pollack: If anything, I think you’re wildly overoptimistic. It just seems like it’s going to head straight to the write‑only memory, as we used to say in engineering school.

Gleckman:  I think that’s right. There are two reasons why Congress creates commissions. The first is that there is an intractable problem they want to get all the parties to sit down and work out. That was the case a few years ago, when there was a broad consensus that we needed to close military bases. The normal regular order of Congress wasn’t going to do it. So Congress turned it over to a commission. Everybody had agreed in advance what they wanted to do. Then there is the more common commission, which essentially is a way to make it look like you’re doing something when you’re really not. I fear that is what this one is.

See the full interview here.

CLASS Act pushed off the fiscal cliff

The CLASS act went from the ranks of the walking dead to the dead and buried. This worthy, imperfect effort at least deserves some mourners at the funeral.

(cross-posted at the Medicare Resource Center).

Pardon my ghoulishness with the following hypothetical.

Suppose that you were to slip and fall on your stairs, suffering a paralyzing injury. You want to stay in your home. But to do so, you might need your niece to spend 10 hours a week helping you out. She can’t really do that for free. You might need a modified van or a wheelchair ramp. How would you pay for these things?

If you needed more intensive services, how would you pay for that? Medicare covers some home care services. It doesn’t cover many critical items people will really need to stay independent. Medicare also doesn’t cover long-term nursing home care. Both public and private insurance leave huge coverage gaps. Home care and other services are financially draining. If you faced some disability, how would you cope without depleting your assets and relying on Medicaid?

About ten million Americans face some similar challenge. Maybe they’ve had a stroke or heart attack. Maybe they face early stages of Alzheimer’s. Almost 90 percent of people living with functional limitations live in the general community. It’s all scary stuff, for so many financial and human reasons.

These challenges were left largely unaddressed in health reform, with one little-known exception: the Community Living Assistance Services and Supports Act (CLASS). CLASS was precisely intended to help people live independently in the presence of disability. CLASS was complicated and shamefully under-covered. So you’re forgiven if you’ve never heard of it. (I helped cover this for the New Republic. It was a lonely beat.) Continue reading “CLASS Act pushed off the fiscal cliff”

Wise words, sadly earned, by Senator Mark Kirk

I won’t vote for Senator Mark Kirk. But his simple words today command respect.

I published something today about the sad demise of the the Community Living Assistance Services and Supports Act (CLASS). CLASS was a component of health reform designed to help people who live with a variety of disabilities live more independently and (whenever possible) to stay in their homes. It’s a brilliant article. I hope that you read it.

Then, by chance I encountered a Sun-Times interview today with Illinois’ Republican Senator Mark Kirk. About a year ago, Kirk suffered a stroke. He’s been slowly and courageously recuperating ever since. He suffers from paralysis on the left side of his body. He has difficulties with the left side of his face.

In describing his ordeal and his recovery, Kirk noted the following:

“I will look much more carefully at the Illinois Medicaid program to see how my fellow citizens are being cared for who have no income and if they suffer from a stroke,” Kirk said.

He said in general a person on Medicaid would be allowed 11 rehab visits in Illinois. “Had I been limited to that I would have had no chance to recover like I did. So unlike before suffering the stroke, I’m much more focused on Medicaid and what my fellow citizens face.” [italics added.]

The simple truth in these comments commands respect. Kirk required aggressive rehabilitation services at one of America’s finest facilities for patients recovering from stroke. Such a profound physical ordeal–and one’s accompanying sense of profound privilege in securing more help than so many other people routinely receive—this changes a person.

Politicians and policy analysts often speak in the abstract about difficult tradeoffs and the need to trim waste in programs such as Medicaid. I’ve expressed contempt for conservatives who conduct such conversations at such very great personal distance from the people intimately affected by service cuts in essential programs. Of course, we liberals conduct many of these same conversations at the same psychological distance, too.

Caring for my brother-in-law Vincent has certainly changed my perspective. Whatever the issues are, they aren’t about some group of faceless other people anymore.

Vincent, intellectually disabled since birth, has not physically suffered in the way Senator Kirk has. He does face other challenges. Vincent is, officially, a pauper. He swipes his food assistance and his Social Security over to the group home that provides for his daily needs.

He is entitled to keep $50 per month for personal discretionary spending. That’s not a lot. It’s expected to cover every shirt, McDonald’s hamburger, or ESPN magazine. That $50 is even less now. Vincent requires podiatry care for a complicated toe problem that has already required multiple hospitalizations. Illinois Medicaid no longer pays the $17/month he requires for this care. Illinois has dropped adult dental coverage—another punishing blow for too many people.

Vincent has us to help him address these difficulties. Many of his friends and housemates aren’t so lucky. They’ve outlived their primary caregivers, or they’ve outlived these relationships. For some, their closest contact with a living relative is a birthday card and maybe a Christmas dinner.

I wish Senator Kirk all the best in his return to work this week. I should mention that I didn’t vote for him. Indeed, I walked door-to-door for his Democratic opponent. I will do so again.

Yet as Washington gets down to brass tacks in negotiating budgets and social policy, I’m glad that Senator Kirk will be there. I hope his personal experiences will help him temper his party’s tough positions on Medicaid and so many other things. He has special reason to know better.

The Cost of Caregiving and the Demise of CLASS

AARP estimates that around 25 Million persons are providing unpaid caregiving to a loved one with a disability, and that those who do so while juggling market work lose around $325,000 in lifetime income after accounting for foregone wages, income from Social Security, and private pensions. The worst part of the demise of the CLASS provisions in the Affordable Care Act has been the fact that the majority of the focus was on the impact of CLASS on the 10 year deficit score assigned to the bill be the CBO (it accounted for around half of the ACA’s deficit reduction), diverting attention from one of the most profound public policy questions facing our nation:

CLASS wasn’t an accounting gimmick, but an attempt to set up a self sustaining, voluntary LTC insurance program that would provide modest benefits (not enough for a nursing home; best thought of as aiding aging in place) to persons with disabilities. If CLASS had worked perfectly and been a self sustaining program, it would have decreased the deficit in the short term, while increasing the deficit in the out years. As I wrote in December, 2009 about CLASS:

Continue reading “The Cost of Caregiving and the Demise of CLASS”

A Small Question for the Social Security Administration

The disability insurance system operated by the federal SSA blows away all such state-level programmes in terms of competence and efficiency. That said, I nonetheless wish to make one small suggestion for improvement.

Yesterday, I read a letter from SSA sent to a blind loved one, announcing that the recipient’s eligibility for continued benefit payments was being re-evaluated. There was an address to which further documentation of disability could be submitted, as well as, quite helpfully, a phone number for recipients who could not understand the review process.

The snag was that all of this information was printed flat and in regular sized type, meaning that most blind people couldn’t read it. A blind friend in the UK tells me this is the common practice of many disability agencies here as well.

SSA knows which recipients are blind. How hard would it be to put Braille and large print version in their communications to visually impaired recipients, not all of whom have someone like me to read their mail to them?