Samuel Bagenstos is one of the nation's leading experts on disability law. I caught up with him in late May for a conversation about the Americans with Disabilities Act, Medicaid, and health care reform. Below is an edited transcript of our wide-ranging conversation.
Harold Pollack: Thanks so much for joining me on Curbside Consult. We should start by you saying a little about yourself and your own background.
Sam: I teach at the University of Michigan law school, where I have been for about four years. I spent a couple of years technically on the faculty but spending time in D.C. working in the civil rights division of the Justice Department. Among other things, I supervised the enforcement of the Americans with Disabilities Act (ADA) by the Civil Rights division. Throughout my academic career, I've spent a lot of time working on civil rights issues as well as non-civil-rights issues.
Harold: What kinds of cases did you spend most of your time on in that work?
Sam: I've worked on all kinds of things. One of the things you find out about disability rights law is it really affects everything that happens in America, everything that government agencies do, everything that private entities do. The earliest cases I've worked on, back in the early '90s, were cases about what ADA should cover. Among other things, I worked on a case called Abbott v. Bragdon about whether a dentist could refuse to treat a patient with HIV. I spent a lot of time working on cases involving physical accessibilities of businesses, movie theaters, sports arenas, so that people with disabilities can do everything in their day-to-day lives that everybody else can do.
In my most recent time in government, I spent a lot of time working on the intersection between the ADA and the Medicaid system to guarantee that people with disabilities can get services in their homes to enable them to fully access their communities instead of having to be institutionalized.
The triumphs and limitations of the Americans with Disabilities Act
Harold: It seems to me that the ADA is one of the real quiet triumphs of American social policy, or maybe not so quiet. It's not an unknown thing, but the depth of social change that ADA accelerated and exemplified is amazing. What are some ways that ADA has changed American life for the better that people maybe don't notice but that has become part of the fabric?
Sam: The ADA turned 23 this summer. The biggest change is our physical spaces are much more accessible than they used to. That is a quiet thing in a lot of ways, because the ADA results in changes in architectural standards that all new and all renovated buildings have to comply with. Pretty much that just happens as a matter of course. There has been some litigation about it, of course.
The law has changed the norms of the architectural profession. So you see in America many more people who have lots of different kinds of disabilities out in the world doing things that everybody else does. It's really striking when you compare the United States to other countries. When I have students with disabilities, who come from other countries knowing the problems we are still finding in America, they find the United States is Nirvana in terms of accessibility. That's the quiet success that we're having.
Harold: It's striking when you go to the great social democracies of Europe that have, in any number of ways, more generous welfare states. If you're moving around in a wheelchair in Paris, London, or any of those capitals, you will really have a hard time.
Now, you have also talked about some of the shortcomings of the ADA. Some of that gets into the health policy that my listeners may be more familiar with. What are some of the ways the ADA has fallen short of what was hoped for, or was the wrong tool to deal with some of the issues people with disabilities are facing?
Sam: The biggest limitation has been with employment. There has been a lot of controversy over the effects of the ADA on the [low employment rate] of people with disabilities. It was true in the '90s when the economy was good. That has really been true with the recession of the last few years, when you saw people with disabilities falling out of the workforce at a much higher rate than people without disabilities. That's something that the ADA has not really succeeded in addressing.
Harold: Let me ask you about an argument that economists have made: ADA basically makes it easier for me to sue if you fire me because I'm disabled. It makes my employer liable to make certain accommodations that might be a little costly, or maybe more than a little bit costly, to accommodate my needs as a disabled employee. It's really hard to monitor discrimination at the hiring end. So employers are responding by being more reluctant to hire people with certain disabilities. Do you think there's some merit in that argument?
Sam: In the first couple of years after the ADA was enacted, my read of the evidence is there was something to that – for at least a class of individuals with disabilities. People with disabilities are a very broad group of people, with different kinds of limitations. Many of those limitations have nothing to do with their ability to work, so you really have to distinguish people who need workplace accommodations from people who are just the victims of stereotyping, and that sort of discrimination. At least among the class of people who are likely to need accommodations, in the first couple of years of the ADA's implementation, it does seem like there was a negative employment effect.
There were also other things going on. There was, pre-existing the ADA, a long downward trend in the employment of people with disabilities. Studies that have extended out the trend line show that there's not really that much difference overall in the trend line from the ADA. The ADA hasn't been a great success in moving people into employment, but we're not really seeing the dis-employment effects of the ADA that some economists are.
A lot of this has to do with the Social Security Disability Insurance program, when it was expanded in the '80s, and then how that cashed out in the '90s recession.
Harold: There's one other argument that you made about employment. There's a wonderful article that you wrote in the Yale Law Journal on the future of disability law. It was a fascinating discussion of what ADA can and can't do, and some of the basic choices we face.
You noted one paradox in the law: Employers are required to do things that help me on my job. Yet employers are not required to do things that would help me on any job, and just help me be more self-sufficient in my life.
If I need something in my workplace to help me move around, that's one thing. If I need a motor scooter that allows me to get anywhere, to get out of my front door and get transportation to my workplace, that's not my employer's responsibility. It's not anybody's responsibility to help me in this more general way.
Sam: That is the biggest reason why I see the ADA as not improving the employment picture for people with disabilities. The ADA – as far as employment goes – is another anti-discrimination law. Anti-discrimination laws, at least in the U.S. legal system, are about prohibiting actions that are basically faulty actions by employers. Actions we're going to hold employers responsible for.
The way the statute's been interpreted, since the beginning of the ADA, has been that employers are responsible to accommodate employees on the job. Employers don't have a responsibility for what gets you to the job, or what helps you throughout your life.
If you talk to folks with disabilities, many of them will say: "The ADA is great. If I could get to the front door of the employer to apply for a job, and get discriminated against, the ADA would help me. My problem is I don't have the transportation, or the personal assistance services, or the other services necessary to get me to that workplace."
Harold: It shows the fundamental limitation of helping people by trying to find someone who's done something actionably bad against that person ... as opposed to enacting broader social insurance. How can we help each other with the things that we need to be successful in life, even if no one particular person has the responsibility, or the blame, for the challenges a person faces?
Next: 2 of 7 – Federal disability programs
Federal disability programs
Harold: Let's shift gears to talk about SSDI, Social Security Disability Insurance. This gets into an area where most (non-disabled) Americans are thoroughly baffled. How has SSDI – and its companion SSI (Supplemental Security Income) – expanded, and how has that had some unintended, or some employment-reducing consequences?
Sam: There are a couple of things going on here. One concerns eligibility. If you read the SSDI statute, what it says is that you have to be unable to work in any job in the national economy, and unable to earn substantial gainful income in any job in the national economy. That's a really broad standard. It's really hard to make sense of that in individual cases.
Through the years, the Social Security Administration, trying on the one hand to give benefits to people who deserve them, who really can't, because of whatever reason, work in any legitimate job that they can think of. On the other hand, trying to keep the statute within bounds, make sure that it's not just giving out money to everybody, have developed a series of rules, administrative rules to try to make sense of the statute.
Throughout the 1980s, there was this push and pull between the administration and Congress about what those rules would be [particularly] on issues such as pain or mental disabilities, which are difficult to measure objectively, but can be really disabling for many people.
The broader interpretations of the disability definition went when the recession hit in 1990. Lots of people who couldn't find jobs – who probably did have real pain or some mental disabilities, but who otherwise would have been in the workforce – ended up on Social Security Disability Insurance, because that was the safety net available to them.
One of the persistent facts about SSDI is that once you get in, you don't get out. It's really hard to get off Social Security Disability Insurance, and there are a lot of reasons for that. That's one of the reasons why you see this persistent decline in employment for people with disabilities that really accelerates, not when the ADA takes effect in 1992, but instead a couple of years before, when we had this recession.
Next: 3 of 7 – What 'This American Life' missed about disability
What This American Life missed about disability
Harold: I'm ambivalent about that, because SSDI is so critical for people. It seems to me that recently we've seen some pretty stereotypical attacks on the growth of this program, which basically implies that people are getting on the program who shouldn't be on it.
I don't know if you saw the "This American Life" episode about disability, but I thought that presented a rather unfair picture of the growth in this program. At the same time, there are some real problems with the program that we have to address. What did you think of that program?
Sam: In some ways there was some nuance there that didn't really come across very well. The overall picture of the This American Life episode that was basically: "SSDI and SSI are the new welfare. They are the ways in which people can avoid doing work that they really should be doing to earn their way in life." That's not a fair picture.
Certainly, we do have an increase in SSDI and SSI use, in part we would expect that in a recession. It always goes up in recessions, so you would expect that. In part, it's about demography. You have Baby Boomers getting to the point where they've paid into the SSDI system.
SSDI is contributory social insurance. It's like the rest of Social Security. They've paid into the SSDI system. They're getting close to retirement age, and that's the age when people tend to get work-related disabilities in higher numbers. You have a really large wave of women in the workforce in the '70s and '80s reaching that age. It wouldn't be surprising that you'd see those numbers tick up, and there was something very alarmist about that program.
You hear these anecdotes about people trying to get their kids not to do well in school, so they could get SSI checks. Not doing well in school is not something that's going to get you an SSI check. There was a very serious disability determination process for all these.
Harold: The child SSI part was especially misleading. I spoke with Chana Joffe-Walt. I like her. I think she's a good reporter. I think she misunderstood things. If you look at the decline of kids on traditional welfare ... that decline has been so much greater than the uptick in kids on SSI. Most of the kids who've tried to get on SSI for these controversial behavioral or mental health diagnoses are rejected.
The real problem we're having right now is massive recession. We have all these really low-income single moms with kids who are not eligible. They're eligible for some food stamps, but that's about it. Some of these people are driven into the SSI system, who before would have been in some other program.The idea that people have basically been shifted over from welfare to SSI, the numbers aren't even close to make that argument.
Now there is this growth in the SSDI caseload for people with mental health problems, and for muscular-skeletal issues. These conditions are more diverse. They're more subjective than some of the other diagnoses. There are parts of the country, like Appalachia, where there's been a pretty dramatic growth, which obviously is related in part to the death of employment in some of the blue-collar industries there.
Should we be tweaking the program in some way, to respond to this uptick in the roles?
Sam: The program should be reformed, and people have been saying this for a long time, in a couple of ways. Number one, it is really hard to get off the rolls once you're on. In order to establish that you are eligible for SSDI, you have to show you're really unable to work. Which means people end up sitting out of the workforce. [So people can] develop a psychological investment in the idea that they're unable to work. Some of it is when you have significant gaps from the workforce in an economy like this one, it's really hard to get back in. Of course, people who work at any point during their determination process are likely to have trouble getting SSDI.
SSDI doesn't come into play until people have significantly separated themselves from the workforce, and early intervention is an approach that ought to be taken. There are a lot of proposals about how they do that. One approach is to provide some sort of partial disability paid for by the state. At the same time people could be given rehabilitation to stay on the job so that they don't have these gaps. That's also the point of the experience-rating of disability claims, to give employers the incentive to keep people on the job who acquired disabilities. That's also a possibility.
Interventions that focus on the time before people get on the SSDI rolls is crucial. There have been a number of efforts to provide incentives to people who are already on the rolls, those are important, but I think those have borne limited fruit.
Next: 4 of 7 – Health insurance
Health insurance
Sam: The biggest issue for a lot of people who are on SSDI or SSI, until the Affordable Care Act, was that that disability assistance was the ticket to receiving health insurance. There have been some work incentive programs designed to insure that people don't lose their health insurance, their Medicare, or Medicaid when they go back into the workforce, that have had some, but not very much success. Once the Affordable Care Act is fully implemented, maybe some of the need to go on SSI or SSDI to get health insurance will go away, and that might help the picture as well.
Harold: I'm struck by two anecdotes here. One I found in the "This American Life" episode. Chana Joffe-Walt interviewed this guy. He was maybe 58. He had lost a job in a paper mill. He had a heart condition. He would have loved to remain working in that paper mill, but that job vaporized. He ended up on disability.
You can imagine his health insurance must be quite costly given his age and his health history. What else is he going to do? If the health insurance were taken care of, he probably could do another job. He'd probably be much happier and more productive, but there's no employer who's going to hire that guy, and pay the annual insurance and healthcare costs he probably incurs. It's just unrealistic for him.
I was on the campaign trail in 2008, going door to door for the Obama campaign ... I met a number of people, who were in very serious financial trouble, who were actually getting on disability, but who were in the waiting period for Medicare. There was this one guy who needed a liver transplant, and he was getting excellent medical care. He was basically going medically bankrupt while he was sitting in this two-year waiting period. It's such a barbaric requirement, that these people go through this very long process to qualify for SSDI. Then they have this additional waiting period before they can get Medicare coverage. His family was having a garage sale, selling little trinkets to try to raise money to pay his medical bills. I bet you that on their front lawn they probably had $5,000 worth of stuff ... We treat people in such an indecent way when they're in these very serious circumstances.
That's another aspect of disability policy: What do you do with people who have these really serious conditions? It was clear for me that one of the real challenges that ACA was at least trying to deal with this, trying to protect people from catastrophic medical expenses that leave them not only on the disability rolls, but that cause people with cancer to lose their homes. What's your take on how well ACA is doing the job of filling in some of these gaps?
Next: 5 of 7 – Medicaid expansion and the disabled
Medicaid expansion and the disabled
Sam: We'll have to see. It's promising, for sure. If the Medicaid expansion were fully implemented – if all states would take up the Medicaid expansion – that will help a lot. A lot of folks who have disabilities but don't qualify for Medicaid because they don't qualify for SSI or SSDI right now. They still are poor enough that the Medicaid expansion is something that would really help them. In the states that have taken it up, that's going to make a big difference.
Certainly the availability of insurance on exchanges is going to make a big difference, the getting rid of pre-existing condition exclusions and caps. Lifetime caps for treatments are a huge problem for people with a lot of different kinds of disabilities that require ongoing treatments. These are folks who can't get jobs that provide health insurance, through the group market that doesn't have caps. They end up either trying to find these very expensive policies which they can't afford, or just not having insurance. That puts them on public programs.
That's going to make a difference for people with disabilities, and ought to make a difference in terms of employment of people with disabilities. It doesn't solve the problems like transportation, assistive technology, personal assistance services, that are also essential to getting people with lots of different kinds of disabilities into the workforce. But it does relieve what's probably the biggest disincentive to working for a large number of people, which is that if they go into the workforce, they won't get the health insurance that their disabilities require them to get, to pay for the services they need.
Harold: I'm nervous about the exchanges. My wife and I take care of her brother, who has Fragile X Syndrome and is intellectually disabled. He's been on Medicare and Medicaid continually, which we're very grateful for ... We hear a lot about how Medicaid has so many problems. Certainly we've experienced some of those problems. If someone said to me, "Would you be willing to take him off of Medicaid, and put him into a health insurance exchange?" I would be so incredibly nervous about that, because the reality is that Medicaid has provided for his needs, and has basically covered what he's needed.
It seems to me that, for people with complicated disabilities, or complicated medical problems, the exchange is an unknown animal right now. Of course, the removal of the lifetime cap would be great, because he would have hit the lifetime cap many years ago. Last summer he had three hospitalizations, and that's not so unusual. How confident are you that the moving parts are going to move the way they're supposed to move?
Sam: That's the real question, and we'll just have to see. I'm hopeful that the moving parts will move as they're supposed to move. The Medicaid expansion issue is a big issue. The biggest problem is you have a number of legislators – not even governors so much, but legislators in a number of states – who are really willing to leave not just a lot of federal money, an almost completely federally funded program, on the table. This is something that would help their citizens who are of limited means, and would also probably be very beneficial to a number of the hospitals in their states, that end up seeing people in emergency rooms who can't end up paying.
It's surprising that states are doing that. I think at the end of the day, folks will make the sensible decision, in terms of dollars and cents, but also the right decision in terms of what people need, and expand Medicaid everywhere. We're seeing this transition period, where lots of people are going to be left in the cold. Robert Pear had a story in the New York Times today about precisely this, the states that aren't taking up the Medicaid expansion. That's the biggest concern ...
I'm sure there will be administrative glitches and things that need to be worked out. If the political process in Washington were more functional, I would have more confidence that those things could be worked out more easily, but in the end those will be worked out.
Helping governors say "yes" to Medicaid
Harold: It seems to me that President Obama and Republicans in the House, they basically have no common interests ... Republican governors and the President have some real common interests, because these governors are responsible for the health needs of hundreds of thousands, or millions of people. They need to run stuff. They have hospitals that they want to help. They have interest groups that very much want them to expand Medicaid.
They need a dignified path to do that, because of course they've spent the last three years claiming that Obamacare is evil incarnate, and so on. The President needs a dignified path to cooperate with them, too, because these are his political adversaries. They've been trying to get Obamacare overturned in the Supreme Court. Yet, they have a lot of common interests.
If I'm advising President Obama, I basically say, "Find a way to work with these Republican governors. Go to war with Paul Ryan. But don't go to war with Rick Scott, because he needs to extract something from you so that he can go to his legislators and say, "I was totally against Obamacare, but now that he's letting me do X, it's not Obamacare anymore ..."
There are hundreds of thousands of needy people who would benefit if these politicians can find a dignified compromise. Maybe we can't do that until the President leaves office. Maybe some of these states are going to come in in 2018, when they can go and sit down with a Republican president, or another Democrat when at least it's not the hated Obama anymore. But there are a lot of people who can't wait that long. I don't even know what a person in Texas is going to do over the next several years.
As you mention, many governors are actually quite happy to expand Medicaid, but their legislatures are not going to go along with it, as we're seeing in Arizona and in several other states. These deeply conservative legislatures are going to fight this, and they're not listening to the state hospital association, or whoever it might be. One would have hoped that interest group politics would trump ideological and partisan politics, but so far it hasn't, or at least it hasn't sufficiently overcome it.
What are the disability advocates doing in the red states? You're involved with helping some of the groups that do advocacy work in this area. Are they active in that?
What disability advocates are doing in 'red states'
Sam: Yes, they've been quite active, trying to push the Medicaid expansion. From the perspective of the organized disability community from the beginning, one of the aspects of the Affordable Care Act that people saw as among the most important. There's a whole series of provisions that are about community-based services that are also really important, but the Medicaid expansion people focused on from the beginning ...
In many states, the disability community is very organized. They really are putting pressure on. It's really interesting because a number of quite conservative governors have said, "We really do need to expand Medicaid. It's a good deal, financially. It's the right thing to do, and it makes sense." Yet you have a number of very conservative state legislatures that are blocking it in places like Arizona, Florida, and Michigan.
In some ways, everybody's trying to make sense of what to do with such ideological state legislatures, just like in the House in Washington. Again, the standard interest group politics aren't working. Maybe a number of the folks in the majority of the House in D.C. and in the state legislatures will say, "That's exactly what we were sent there to do, to blow up interest group politics," but you have real people who have very serious needs who are getting left behind as a result.
Next: 6 of 7 – The lost opportunity of the CLASS Act
The lost opportunity of the CLASS Act
Harold: Health reform is missing some key issues around community services. I'm disappointed that there's not more outside of expanding Medicaid to help the disabled to deal with long-term care issues. It seems to me that there's a bunch of issues that we haven't addressed at all in health reform, or haven't addressed well. I don't know if that's your feeling as well?
Sam: There are a couple of places where the Affordable Care Act did address those kinds of issues. The biggest one, that is a depressing story at the moment from my perspective, is the CLASS Act [See this conversation with Howard Gleckman], which is no more would have provided a government-sponsored long-term care insurance program that would have been geared toward services. Not in nursing homes, but in people's homes.
For many reasons, a government-provided long-term care insurance program makes a lot of sense. If you look at the private long-term care insurance market, it's really unraveling. You have a bunch of long-term care companies that are raising their rates substantially on existing policy holders, that are not writing policies anymore. A number of employers that used to provide long-term care policies aren't doing it anymore because it's getting priced out of the market, and these are needs that we're all going to have, if we're lucky enough to live that long.
We just are ignoring that. Some people have enough money that they don't have to worry about this. It's not very many people. Many people are going to end up spending down their money to have Medicaid provide this ... It's not an ideal situation.
The CLASS Act had flaws. The biggest flaw was there wasn't a requirement of universal participation. You have this sort of adverse selection problem you have in the insurance markets, where it's only the people who are most likely to use the service who sign up for it, and therefore that drives the prices up. That's what we're seeing right now in the private long-term care market.
Eventually, nobody signs up for it, or nobody can afford to sign up for it. That's why, if there were a uniform, universal requirement of paying taxes or dare I say an employer mandate, this would make a lot of sense from a policy perspective. The Supreme Court has made it harder but not impossible to do that, but politically that just was a non-starter at the time the ACA was adopted.
Harold: It is ironic that it maybe the best example of why you'd need an individual mandate, even more than the regular insurance market. My wife and I actually purchased long-term insurance. The University of Chicago just started offering it, and it's costing us together, for the two of us about $300 a month. I actually spoke with several of the nation's leading long-term care experts about which boxes to check, how much coverage I should have. We were all confused.
Many of the real long-term experts told me: "Well, I'm not actually sure whether this is a good deal ... whether you should wait till you're older. There are serious questions about the stability of the market." These are people that are advocates for long-term care insurance, who know a ton about the subject, and they are confused. Also, the premium was just much, much higher than it would have been under a mandatory program.
I covered the CLASS Act during health reform when I was writing for the New Republic. It was a very strange experience. When CLASS was legislated, it had a lot of support. Ted Kennedy was a big backer. Partly in his memory, it got pushed through, and the Congressional Budget Office gave it a pretty favorable score ... And then as soon as the bill was passed, I started talking to people who said: "Oh, the CLASS Act is dead. It's not going to go anywhere." It was literally like a month later.
The Medicare actuary and CBO had never agreed about some of the assumptions. I never got a good story about who was right and why. The research literature was pretty shaky on this because we were headed into unknown territory with the CLASS Act.
The idea behind CLASS was appealing: You would sign up. You would pay a certain amount, $100 a month or whatever, and you would be vested after roughly five years. If you then became disabled and you needed a ramp put in your house, or you needed to have a home health care aide, or you needed some contribution towards a nursing home, under the CLASS Act you would receive some help.
There was a requirement that this had to be self-financing. Basically the Secretary of Health and Human Services could never do this. She felt that she could not, in the end, certify that this thing was financially stable. It's been put in the freezer. It's just a sad story ...
Had CLASS imposed more strict requirements on the front end to keep out people with health problems, it would have deeply disappointed a lot of advocates, but it might have been more financially stable. We ended up with nothing. It's been a nightmare. I've never gotten a clear story about why it couldn't be fixed, why the Obama administration didn't try to fix it ... Maybe it was just something too complicated to stick into health reform, with everything else going on. It's just a very frustrating story.
Sam: That's right. It was something that seemed like it was always going to be a part of health reform, but also was always very controversial. It elicited just an enormous amount of negative reaction ... I don't know what happened, but it does certainly look like the administration just didn't want to have that fight, in addition to all the other fights they're having, as they're trying to expand health insurance. It's a lost opportunity.
We now have this commission that's supposed to come forward with a plan. Anybody who's been to Washington knows what happens with these commissions. It's a fight that folks who care about people with disabilities know about, but we're all going to need this. If we live long enough, we're all going to have disabilities. That's one of the things about the disability community. We're all going to be a part of it, if we're lucky. This is a place where, financially, everyone in America is going to experience the pain of not having this program.
Harold: Some of us are going to end up in institutional care. If we had different resources, we could be in our homes and out in our communities in a more humane setting, if we had the right supports in place. We could do a lot more.
Sam: That's one of the problems with Medicaid being the default long term care provider for America. There have been lots of efforts to rebalance, restructure, or twist the system, but the basic orientation of Medicaid remains to provide care in nursing homes. Everything else is an exception to that.
The CLASS Act was promising because it recognized that actually, for a very large number of people, you don't need that institutional care. What you need is some cheap modifications to your home. You need to pay for somebody to come to your house to help you part of the time. It's both less expensive and more consistent with enabling people as they age or acquire disabilities to remain full members of their community, to have a program that focuses on that. Medicaid has changed through the years. It's more like that than it used to be, but it's still not that.
Next: 7 of 7 – The Faustian bargain of Medicaid and institutional care
The Faustian bargain of Medicaid and institutional care
Harold: It seems like we've made a Faustian bargain, where the way that we kept costs down is to force people to self-select in Medicaid for largely institutional services that they really need. There's this fear that if we allowed more services in people's homes, that there would be this woodwork effect among people who could somehow do without these services.
We hope people can get a family member to provide these services without us having to pay ... We're nervous about bringing that whole population into the system and having to pay for it, so we've set up this very strong bias towards institutional care so that we're serving people who really need institutional care.
One human cost of that is to have people in institutions who might otherwise not be there. We also have people living in their homes who are not getting the care that they need so that they can thrive. But they're not yet so desperate that they need to be in an institution. Every day, many people are facing the consequences of that.
Sam: One of the things we're doing is to impose real burdens on family members. At the Department of Justice, I worked on many cases about promoting non-institutional community services for people with various kinds of disabilities. I went around the country and met with a lot of family members of people with various kinds of disabilities, who had grown up in their own homes. In earlier times, when someone was born with a developmental disability the doctor would say, "Yeah, send this person to an institution," but people don't want to do that now, and that's a great advance.
We have people with developmental disabilities who grow up in their homes, who are a part of their community. Their parents want them to stay in the community. They want to stay in the community. They have a life that's in the actual community that we all live in. Current policies place great burdens on parents and family members to provide the services that the state's not providing. It also puts this great burden of worry on parents, as they age. What's going to happen when they're not able to provide assistance to their children anymore because they're too old, or when they die?
Seeing the best face of American social policy caring for a family member
Harold: You're describing exactly the circumstances of our family. My in-laws took care of Vincent, my brother in law, every day of his life. They were encouraged to institutionalize him, and chose not to. Eventually my mother in law died suddenly, and then he moved into our home, and he lived with us for a couple of years. My wife left the workforce. Vincent had a number of medical problems that are now, fortunately, much better. Yet Veronica ended up out of the workforce. She's his advanced-practice nurse, case worker, chauffeur, bottle washer, worrier, everything.
In some ways, we've seen the best face of American society and social policy, taking care of Vincent. I must say that in the nine years that I've been directly responsible for various things, we have never had a negative interpersonal experience, virtually with anyone. Last year, I took him to Los Angeles on vacation. We go through O'Hare Airport at 7:30 in the morning. We're very slow, moving through the security checkpoint. There were all these Type A business travelers behind us in line.
Vincent was conspicuous to say the least. He wears necklaces and he's very ungainly. He didn't want to take his shoes off. He had this "WTF" reaction to the whole security procedure. Everyone behind us waited very patiently, gave him a smile, and waited for him to move through. There's been this incredible, positive embrace of people in our society, that our family sees every day.
At the same time, there's so many holes in the system of care. We do know, mainly from his house mates and his friends and the people that we've met in this, how many older parents are not prepared for what's going to happen to their loved ones. There's huge waiting lists for services, particularly in Illinois, which has a very troubled Medicaid system. People are very fearful of the future for their loved ones. You also find particular things where the Medicaid system breaks down, like dental care.
Developmental disability is absolutely where the American Welfare system is at its best. If we had a loved one with severe mental illness it would be so much harder, or if he had more complicated medical issues. We see what people go through with housing and other things or if he exhibited behavioral problems.
On Tuesdays, Thursdays and Saturdays I think, "Wow, we have a great country that's really advanced so much over the past 50 years," that I see in my own life in such a positive way. Then on Mondays, Wednesdays, Fridays, and Sundays, I think, "Wow, we are so messed up and so failed in our social insurance system to really do the job that needs to be done."
And today's Saturday, so I'm feeling pretty good.
Harold Pollack is Helen Ross Professor of Social Service Administration at the University of Chicago. He has written about health policy for the Washington Post, New York Times, New Republic, The Huffington Post and many other publications. His essay, “Lessons from an Emergency Room Nightmare,” was selected for The Best American Medical Writing, 2009.
