The Truth About Disabilities and Health Reform

by Harold Pollack | September 14, 2009

Will people with disabilities suffer if health reform becomes reality? Sarah Palin famously made that case in August. And quite a few people seem to believe her. To get a more informed perspective on this, I sat down to speak with Lisa Iezzoni, MD.

Iezzoni is Professor of Medicine at Harvard Medical School and Director of the Institute for Health Policy. Among her areas of expertise is “risk adjustment”--an arcane-sounding term which basically entails looking at how much it costs to take care of people in different states of health, and then adjusting payments (to doctors, to hospital, to insurers) based on that.

But it’s her personal expertise that makes her particularly well-suited to talk about health care and disabilities. She is not only a doctor; she’s also a wheelchair user. A book she co-authored, More Than Ramps, provides policymakers and clinicians with nuts-and-bolts advice about how to improve health care quality and access for people with disabilities.

By the way, we hope these interviews will become a regular feature on The Treatment. We’re calling them “Curbside Consults.” For the uninitiated, curbside consults are a venerable medical tradition, whereby a doctor seeks informal but expert advice of a valued colleague in treating a patient with a complex or challenging condition. Health policy is hard, even for those of us who know it well. Hopefully these consults will help clear things up.

Our interview, over the phone, took place last month. If you want to read the full interview, click here. I’ve included a shortened and edited excerpt below.

Pollack: It seems to me that the disability community has been oddly marginalized in the recent health reform debate. There's certainly a huge and active conversation, but it's not on the front page. I'm not sure that you share my assessment in that.

Iezzoni:  I'd like to just push back on a little bit. There really isn't a disability community in the sense that we often think of a community as a cohesive political agent for change. There certainly was such a community in the late 1980s when the ADA was being put together, but that took a lot of work. There really isn't a unified community, especially around health care, where there historically has been a lot of discomfort in some of the very civilrightsoriented advocacy community with the medical model.

Pollack:  There are, however, common issues, some of which are civilrightstype issues, some of which are servicedelivery issues, and some of which are health insurance issues. When I think about, for example, the 24-month Medicare waiting period in [Social Security Disability Income]…

Iezzoni:  It's just amazing to me that that still exists. 

Pollack:  Let’s shift to the surveys you've conducted with women and men, mostly women, diagnosed with multiple sclerosis. More than 90 percent actually had health insurance.

Iezzoni:  Yes. 96 percent had some form of health insurance. People with MS have two things going for them. Number one, many were formally employed, and so they have paid into the Medicare trust fund sufficiently to get SSDI. MS is one of those list conditions. So--assuming there's a medical record and documentation is up to stuff--people with MS typically do get SSDI. Second, people with MS have a fairly high rate of being married. So they can get spousal health insurance if their spouse is working.

If you dig a little bit deeper under our results, about a quarter of our insured respondents still were splitting pills, delaying medical care, feeling like they didn't enough money for basic necessities because of medical care. It’s the old issue of underinsurance. It really is an undercurrent for this population, especially where some of the drugs can cost upwards of $20,000 or $30,000 a year.

Pollack:  The leading bills moving through Congress repeal lifetime caps and include related provisions. Would these ensure that people would be liberated from these kinds of anxieties?

Iezzoni:  I think that the very first thing that removes anxiety from people is the prohibition against denial based on your health status. That is just a terrifying thing. I'm a professor of medicine at Harvard Medical School. I am afraid that if I lose my job I will lose my health insurance because nobody would ever insure me again. And for somebody like me to feel that way, think of how other people who do not have the connections I have must feel.

Pollack:  Aside from the large policy issues we’ve discussed, you've also written about basic problems of medical care: for example the problems wheelchair users have literally getting inside the door of medical facilities and up onto the examining room table for a proper checkup. People in multimillion dollar cancer centers who can't get help to use the restroom. Given that millions of people with physical disabilities of various sorts need to be using these facilities, why is it so hard to get these basic things right?

Iezzoni:  [laughs] It's just a mystery to me. There are so many nurses and practice assistants out on disability because they got injured, they strained their back, they pulled a muscle transferring a patient.

Why can't we get an adjustable examining table, an adjustable radiology table, the monitoring equipment, etc. to be able to just do this? I would call your attention to section 510, again of the health bill that was passed in Kennedy's committee in July. It's called "Establishment of Standards for Accessible Medical Diagnostic Equipment." …

There are also [other bills] that could be really, really important. For example, a colleague drew my attention to a bill submitted by Representative James Langevin (D-RI), in July that amends the Social Security Act to eliminate the inhome restriction of Medicare coverage of mobility aids… It's called the Medicare Independent Living Act of 2009. Medicare basically limits the wheelchairs that it will pay for to equipment that individuals must use in their home.
So if you're somebody with MS for 33 years, like me, who can get around inside of my house, but I can't around even five feet from my house if there's nothing for me to hold on to, Medicare would not cover a wheelchair for me, because I can get around inside of my house by holding on to furniture, or door frames, my husband, walls. But the minute I go out even two steps beyond where there's something I can hold on to, I can't function. They would not pay for a wheelchair for me like that.

So that little tiny bill, if that were passed, could all of a sudden really open up things for so many people who, unlike me, can't afford to go and buy a wheelchair when my insurance turns me down… and therefore cannot get out of their homes, cannot participate in community life, cannot maybe go to work.

Pollack:  In one sense, it's a tiny bill. But it raises delicate questions; it's not a tiny bill in terms of the amounts of dollars involved.

Iezzoni:  Possibly not. However, I think it's all going to be a matter of how they set the boundary…For example, I probably would not support paying for scooters for people who only want to use them to go to the mall, not for essential shopping, every six months. But if it's somebody who needs it really literally on a daily basis to buy groceries, to go to the drug store, etc., then I think that, in fact, there may be costs that could be avoided by giving somebody the scooter. Depression being one, frankly: the costs of caring for people who suffer from that condition because of feeling isolated, and also the need for certain other help around the house in doing tasks like grocery shopping.

Pollack: I've written some pretty savage things in my column about critics of comparative effectiveness research and people trying to frighten Americans living with disabilities and chronic conditions, and the elderly. Yet there is a need in legislation like this to draw some boundaries and perhaps to use CER in doing that. That is a very unsettling subject to a lot of people.

Iezzoni:  It is true that there will have to be boundaries…But the argument, “Oh, isn't it awful that we're going to have to place boundaries,” begs the question. We're already placing boundaries… We already ration wheelchairs, to use a specific example. Who is involved in setting the way that rationing is done? It certainly hasn't been comparative effectiveness research. There really isn't any CER about wheelchairs that I would view as suitable for making this kind of decision.

Pollack:  Some of the issues that you raise go beyond policy and get to the way that medical providers are trained and do their work. Some of the things that really struck me in your book More Than Ramps were things like providers  just the fact that wheelchair users are others are less likely to get pap smears, they're not asked appropriate questions about sexuality. In a variety of ways providers seem to be very ill at ease in knowing how to provide the mechanics of healthcare properly to a large population of people. How do we address that aspect of this problem?

Iezzoni:  I have lots of answers to this question. One of them is we may just need to wait. I think that the younger generation coming up--the kids in high school and college now--are just so much more comfortable with disability, with the whole the notion of difference. Because people with disabilities are people who live their lives just like everybody else does. They just do it in a slightly different way. It may be that we just need to wait people out…

Pollack:  Your last comments point out either the irony or the grotesqueness in the current public debate, in which critics of health reform are attempting to argue that the elderly and the disabled who would be the most disadvantaged by this legislation. Many of the 615 pages that we've discussed are provisions that are intended to provide new services or improved services to these very populations.

Iezzoni:  Absolutely. I believe that. I think that is truly the intent of these senators who passed this bill.

Source URL: http://www.newrepublic.com//blog/the-treatment/the-truth-about-disabilities-and-health-reform