‘You work until you die:’ Inside America’s fragmented safety net for the disabled

January 24
(Joe Entwisle)
(Joe Entwisle)

Joe Entwisle first came to my attention over Twitter, where he is a high-volume contributor under the moniker @wheelieboy. Joe has worked extensively in several areas of disability policy and practice. He is now a Senior Health Policy Analyst at Health & Disability Advocates (HDA) here in Chicago. His Huffington Post essay “Debunking the Disability Trap” is a valuable look, from the inside, at the opportunities and the employment barriers that people really face when they rely on federal disability programs. We’re accustomed these days to hearing about Medicaid’s many shortcomings and the perverse incentives associated with public disability benefits. Entwisle’s story provides a valuable reminder that such programs support a worthy path to independence and well-being for millions of people.

Joe and his dad Charles Entwisle met me last Friday to discuss what he regards as widespread misperceptions about the lives and capabilities of people who live with significant disabilities or functional impairments. We met on the street in the Loop and wandered into the Harold Washington Library to find some quiet space to talk. Joe deftly maneuvered the tight spaces in his high-tech wheelchair, which he operates through a combination of sips and puffs into an air-tube. Using a special stylus he holds in his mouth, he operates his Android phone with similar dexterity on various forms of social media.

Now  41, Entwisle was rendered quadriplegic at the age of 16  in a wrestling accident. He brings a distinctive, occasionally ribald perspective on the value of Medicaid, the complex gaps in disability policy and the comic possibilities of the tiny aisle wheelchairs used for commercial air travel. Below is an edited transcript of our conversation.

Harold Pollack: Let’s start with some basic details. As the picture makes clear, you’re in a sip-and-puff wheelchair.

Joe Entwisle:  It all runs on sip-and-puff. It’s pretty basic technology. Hard puff goes forward. Soft puff goes right. Soft sip goes left. Hard sip goes backwards. ...  It’s a pretty wonderful technology. It gets me ready to go.

HP: We parked on a winter day in Chicago around the corner and maneuvered through the semi-cleared sidewalks, etc. I take it you’re very agile with that.

JE: Oh yeah. I can get anywhere, in the woods, across grass and wherever I need to go. It really is good technology.

HP: It’s also $45,000. How do you pay for things like that?

JE: Fortunately, I’ve got insurance through my employer, which is really good. I have a secondary insurance which actually comes from my dad’s policy. He was a federal employee at the time I had my injury. Within the federal coverage, if you’re injured as a minor that coverage stays with you …

And then I have Medicaid as a wrap-around. It helps cover the long-term care cost which would otherwise be pretty much devastating.

HP: Do you need Medicaid now to cover some things that aren’t covered in your other insurance?

JE: Particularly on the long-term care side, for attendant care. Medicaid is huge. It’s a payer of last resort. Medicaid really is the only payer of any resort when it comes to long-term care.

HP: Do you have attendant care that would help you with things right now?

JE: Yeah. I’ve got somebody who comes up 4 in the morning. Then if I’m at home, I do a lunch round at one o’ clock. Then I have somebody who comes to put me to bed at around 10 o’ clock at night …

HP: You telecommute a lot. But you also come down on the train from southern Milwaukee to the Chicago Loop, cruise the mile to work, and put in a regular work-day quite often.

JE: Yeah. I get dropped off at the train station, which is what I normally do. Today's an exception with subfreezing temperatures, which is why I drove down. Usually catch the train at the airport to downtown. In Chicago, it’s roughly a mile to the office. I just walk the rest of the way down. It’s really pretty short. It seems like a quick commute. Especially with the technology these days, I can work all the way down on the train. An hour and 20 minutes is pretty efficient to get from Milwaukee airport to downtown Chicago.

HP: Just to put out on the table some things people will be curious about, tell me about your injury.

JE: I had an injury at wrestling practice -- which was fortunate because if it was during a match it would screw up your record. It’s one of those injuries where crazy things happen. I had a football coach who begged me not to wrestle over the prospect of football scholarships. That was the plan to go to college. I’d wrestled since I was 5, and it’s a sport I love. It made me a much better  football player. Athletics were my passion.

HP: You’re a very solid-looking guy. I can see you as a football player.

JE: I feel rather doughy at this point.

HP: We all do.

JE: I was on a vent for about nine months. For some reason, I was able to get my lungs back, which wasn’t expected. I’m a C 4-5 quadriplegic as result of spinal cord injury. I graduated with my high school class, went to college, grad school. At some point, you make a decision about what you want to do with your life. For me, the injury wasn’t going to change my goals. It’s up to you on choosing what you do.

HP: That injury was 25 years ago. Charles, that must have changed your life quite a bit as well.

Charles Entwisle [Joe’s father]: Yeah. It was definitely a shock. We were almost inundated. The city of Glendale where we lived was good to us. They held all kinds of fundraisers for Joe. They got him his first van with the lift and everything so he can get around. He ended up in summer school that year and catching up what he lost. He went back and ended up graduating with his class and went on with his bachelor’s at Whitewater and went to Madison for a masters in rehab psych.

HP: Joe, maybe we’d start with your current job. What do you do for a living?

JE: I’m a senior policy analyst for Health & Disability Advocates here in Chicago. I’m really proud to work for an organization that does so many incredible things. Most of my own focus has been around health-care policy and employment policy, particularly as it relates to employment and individuals with disabilities. We’ve done a lot of work with states in designing Medicaid Buy-in programs.

HP: Many readers won't know what a Medicaid Buy-in program is. Can you explain that?

JE: Two pieces of legislation -- the Balanced Budget Act and the Ticket to Work -- authorize states to build these Medicaid Buy-in programs. Medicaid buy-in programs allow people with disabilities to buy into Medicaid as if it were a regular insurance program. Basically states started to understand that the (Medicaid) programs that provide access to long-term care all required individuals to have to meet two qualifications: (1) to be medically needy, but also (2) financially needy. It’s that “financially needy” piece that has continually kept people impoverished. It’s required poverty in order to stay alive. To get access to services, you’ve got to be really dirt poor.

The feds and states now realize that there are advances in technology, advances in medicine, and that with those advances you can have a significant medical condition, a significant disability, without diminishing your capacity for full-time competitive employment. If you look at what it costs to keep people on programs and to keep them impoverished, states have been literally financially cutting off their noses to spite their face, as a way to keep people out of programs. When you require access to long-term care, Medicaid is often your only option.

Had the Affordable Care Act have been around before my injury, I would have faced a different situation. My insurance at that time provided access to some of the long-term care pieces, at least to the attendant care. But this pretty quickly evaporated because I exhausted the lifetime expenditure cap on these attendant services. At that point, my only access to care was through Medicaid. For many people, in order to survive, that’s the option.

I should also explain some other things. Social Security operates two separate programs for individuals living with disabilities: SSDI (Social Security Disability Insurance) and SSI (Supplemental Security Income).

These are two different programs each with their own rules. SSDI eligibility is linked with your work history. SSI eligibility comes by nature of being medically and financially needy. SSDI offers a more generous cash benefit. However, the SSI side, which is a base safety net program, has better work incentives. It also comes connected to a much better insurance program (Medicaid) than the SSDI program does (Medicare). It is somewhat odd that you have better work incentives and health care with SSI, despite a number of ways those benefits come attached with pitfalls. Regardless, SSI has always made full-time work an option for me ever since I graduated from school.

HP: So you are currently an SSI recipient? That’s what pays for your attendant care and related services?

JE: Yes, of course you have to monitor your resources and your income. You’re always better off working if you are on SSI. There’s almost no scenario where you’re not better off working on SSI. Under the “two for one” formula, for every $2 you earn, they reduce your cash benefit by $1. Since SSI cash benefits are limited, you gradually wean your way off the cash component of the program. In my work history, I exceeded twice the SSI benefit a long time ago. So I receive help with my health care, but no cash benefit.

Every state has federal administrative arrangements called 1619(a) and 1619(b) programs within SSI. 1619(a) means you weaned your way off a part of the cash benefit but you still retain some cash benefit. With 1619(b) you’ve eliminated the cash benefit, but you retain your connectivity to health care. Now, every state has a cap. The average is usually around $30,000. There’s a formula I can go into that’s really boring. The main point is that these allow you to work and to maintain your connectivity with Medicaid benefits, even if you might have reduced or zero cash benefits as your earnings rise over time. Social Security has put many of the basics into the Red Book, which gives you an overview of work incentives. (More specific information on SSI work incentives can be found here.)

You can also ask for what’s called the individual threshold. Basically, what Social Security has done is pretty smart. They’ve said if you have medical costs that are so exorbitant that your income is too low to cover these costs, then you can actually ask for a higher income threshold than what the traditional state limit would allow.

In my situation, the nature of my disability imposes costly demands on long-term care. At that point, you can earn a pretty significant amount of income without losing SSI supports, i.e. Medicaid. I have been fortunate in the work I have been able to pursue while maintaining my connectivity to the health services I need.

For a lot of folks who work competitively, it’s really about the access to long-term care. This is where Medicaid Buy-ins come in. These programs allow you to buy into Medicaid much as you would a traditional health insurance program. You’re buy into Medicaid and paying premiums, which allows you to have higher income and asset caps than other Medicaid programs. Forty-three states have buy-in programs and each state makes determinations on income and asset eligibility.

HP: Now you are subject to stringent asset limits on your savings and your wealth.

JE: Correct. Excluding my house and my car, I must suppress my liquid assets to remain below a $2,000 cap.

HP: That asset limit seems pointless and gratuitously harmful in your situation. One either finds various strategies to work around the requirement, or it prevents people from planning their futures. You can’t prepare for your retirement. If you have children, you can’t properly save for their college, all that kind of stuff.

JE: The reality for someone in my situation is that retirement usually isn’t an option. You work until you die, literally. A friend of mine is a perfect example. It’s almost creepy the similarities in our life. Both of us had a spinal cord injury at 16. Both of us were injured wrestling. Both of us are policy analysts. He’s a really good guy. He’s 63 years old. He started working for the state many years ago. Yet because of the odd rules around Medicaid eligibility and the differential treatment of earned and unearned income, he literally cannot retire. He knows he has to work until he’s dead or until some rules change. As soon as he starts to draw unearned income (retirement), he’s not going to be eligible for health-care programs or he’ll have to spend down to essentially $710 a month. He could no longer afford his house. He could no longer afford even the taxes on the house.

HP: These asset limits seem especially perverse when low-income adults who get coverage today because of the ACA’s Medicaid expansion don't face the same limits. That seems very hard to justify.

JE: It does. ... In one way I understand where these requirements come from. People who have the means to pay for long-term care should do so. Yet the reality is that very few people could ever afford to do it. Fortunately there are many ways to think about how we balance out the system. It’s exciting to see incentive options within the Affordable Care Act that might revamp long-term care.

For example, the Balancing Incentives Program provides an alternative to traditional long-term care service delivery methodology. Our state eligibility assessments have always been about: How does this person fit into a nursing-home level of care. They’ve always been targeted to nursing home placement. Yet the reality is: (1) nursing home services are very costly and (2) the outcomes and satisfaction for people are often horrific.

HP: How does ACA actually change these arrangements?

JE: It gives states a number of options (see this wonky overview) to rebalance choice between community care and nursing home care and to change the way they deliver services. States that can shift in the direction of greater community care and can receive slightly higher federal Medicaid matching rates, which is a powerful incentive.
States also have options to change the way they assess eligibility. Wisconsin is a great state to look at as far as how they have designed their assessments. These have traditionally been done by nurses. It’s a really long and laborious, expensive process.

There are more flexible ways to do that. Wisconsin has coordinators who provide assessments in the community based on a functional screen: people’s ability to perform various activities of daily living (ADL and IADLs, in the language of such things). Not only do these assessments look specifically at the strict healthcare medical needs, these also explore what’s actually required to meet your needs in daily life. It also seeks to infuse employment issues into everything that you do. These sorts of improvements allow you to redirect services towards more flexible options, and to really target community options first. On top of that, it infuses employment at each step of the way, which is the largest cost-saving component states can implement over the long-term.

HP: What does that mean when you say “community first” practically?

JE: For eons, long-term care services and entitlements have been targeting nursing homes, moving people towards the nursing homes to that level of care. If you need some significant assistance, then you should be in a nursing home. ... At this point, really it’s so much cheaper to keep people in their own homes, living on their own. The health outcomes are better, and individual life satisfaction is incomparably better. Particularly with advances in technology and medicine, people can live the same life that they had before, just with different ways of getting around.

HP: ACA also included the CLASS Act -- Community Living Assistance Support Services. Many people in the disability community were excited by CLASS. Unfortunately, the CLASS Act imploded and was repealed.

JE: This was an immense disappointment. CLASS was finally an option where you could look at freeing yourself from  being tied to so many of the strings that come with Medicaid. The honest reality is that Medicaid isn’t just health insurance. For many folks, it’s really a health-care loan. In many states, there is estate recovery that comes attached to Medicaid, particularly in long-term care services. It’s a piece that’s being whittled down regarding health-care reform, but it’s there.

HP: So you can stay in your home while you are receiving services. But after you die, the value of your home is often legally available to repay Medicaid for the services that you required …

JE: Correct.

HP: One of the tensions in CLASS was that the disability community was very excited about it, but nobody else was.

JE: Right. Most people don’t know what they have to lose. Everyone is temporarily able-bodied. ... People don’t realize that, especially when they’re young. When I was 16, it would have never occurred to me that that disability would ever be a part of my future. You don’t realize quite how fragile life is.
You never think that things like that are going to happen, but they happen all the time. … As we age, these are natural aspects of living. If CLASS could free people from insecurity, and from the indignities of Medicaid asset tests, that would just be an unbelievable gift. Yet people take all of that for granted.

HP: How do you spend your workday?

JE: One of the things I really love about my job is it never seems to be the same day twice. We work with partners and states on many different issues. Some of it’s working on seamless supports to make sure that there’s no wrong door when folks present for services, that employment is the primary driver across services when people come in to receive benefits, etc. I like to think we take a policy approach of working smarter and not harder based on policy options available ...

For a long time, we’ve had a pretty strong legal team. We were one of the last organizations that actually pick up law suits against the state itself. … We have had a great deal of experience and found a lot of success in bringing everyone together: Not just individuals who receive services, but also other stakeholders, people who deliver services, decision-makers at the state level and others. We put these disparate groups together in a room to figure out where the pitfalls, where the essential issues lie, and a couple of special things blossom from that.

You get the big picture as well as the specifics of all the issues, where things are right, not just from one individual, from everyone in the room. It becomes a greater understanding and sometimes a bit of a unifier, too. A colleague once told me: “Everything that happens gets done based on relationships.” I think he’s right in a lot of ways. The ability to bring everyone together in a room, figure out what the issues and the gaps are, do some cluster mapping around on what the gaps are, and establish policy to fill those pieces. It’s part of that old feedback methodology of policy analysis: You analyze, build, implement, assess, repeat. You keep going through that circle until you get it right.

HP: We haven’t talked much about the Americans with Disabilities Act. How does that make itself felt in your life?

JE: One huge benefit of the ADA has been to expose the American public to the pertinent issues. The biggest particular piece for me has been nondiscriminatory access to transportation, to hotels, the curb cuts and so on. These provisions aren’t perfect or ironed out well. They’re still huge in people’s lives …

For me, when it comes to access to jobs, I find the ADA somewhat interesting because it makes some employers nervous about lawsuits.

I worked with some states that have done polling with affected businesses to say what kind of accommodations they are making for folks. The results are surprising, because many go far beyond what’s actually required in the ADA. And really, as an individual with a disability, I see my disability as a value-added credential. I found a way to work around any barriers in everything I do. I think it makes me a better employee. I work really hard to do what I do because I want to be better each and every day, which actually has little to do with disability.

Now, there’s another piece that’s part of the mix where I’ve seen … where paternalism has really taken hold, and has diminished people’s skills because they don’t get good management saying: “You’re putting out a terrible product.” It’s something that terrifies me every day. I worry that somehow, someone’s not going to tell me, “This is not going to cut it” to somehow protect my feelings.

It’s fascinating. You have this fear that because you have a disability that someone would treat you differently regarding work expectations. Bill Russell put equality in the finest statement ever, especially when it comes to employment. He said, “You know you’ve reached equality when you get fired for the same reasons as everyone else.” He’s so spot-on.

People shouldn’t be hired if they can’t perform the essential function of the job. This is crystal clear in ADA, and it’s true whether somebody has a disability or not. … Someone with a disability is usually used to being pretty flexible around many areas of life . Not everyone, of course. ... But there are a lot of obstacles that arise unexpectedly that you’re used to working around which tends to make you actively think as a troubleshooter.

We talk about these issues in the “beyond the label” campaign. We all have different aspects of our lives that get labelled, whether you’re the loud guy who talks too much at parties or the person who dresses funny. It doesn’t change the way you do your job, and that’s true of disability itself as well.

HP: Those ads are pretty funny. You tap into a comical dimension in many of your comments, including the logistics of traveling. You’ve done a lot of traveling in your work.

JE: Yeah, I’ve been a little bit of everywhere.

HP: How do you do that? If you want to go to Philadelphia for a day, how do you do that?

JE: Philadelphia has the worst airport in the U.S., I swear to God, but please don’t tell anyone I said that. Essentially, it’s all about planning ahead. Some airlines are better than the others. Southwest has always been amazing. It just kills me that Midwest Express is gone.

You let the airline know that you’re a disabled passenger. American is really good. It is one of the few airlines where if you go on the Web site and you check the box that says “Disabled Passenger,” someone will actually  call you. I almost thought I was being punked the first time it happened. I heard: “We heard you’re a disabled passenger. What can we do to help?” I'm like, “Who is this, really?”

Sure enough, they were all about making sure things were prepared for your flight. Basically it's making sure the airlines understand your needs (transfer assistance, lifting help, aisle chair, etc.) to make sure that help is available when you arrive. Not only does it make your flight and transfer easier, it expedites loading, which is a win-win for everyone.

When I travel, they transfer me onto an aisle chair, which I always joke and say that it’s the thong version of a real wheelchair. They are seriously tiny chairs, as in thin enough to glide easily down an airplane aisle. The first time I saw one, I thought, “I'm 6’4” and I go about 240. Where do I put my other butt cheek?”

I also have a hard time getting my shoulders through the aisles. Chairs aren’t made to carry broad shoulders. But that’s where you end up going. They strap you in, Hannibal Lecter style. They put cross straps across your arms, across your legs, and then they transfer you onto the plane itself. Once on board, they stow your wheelchair down with the cargo and you’re off.

It takes some extra planning. You may have to find a rental car that's accessible, especially if you have a problem getting access to public transportation. Finding accessible cabs is another interesting process, particularly when you are quite tall. It requires a lot of extra planning, but it’s all quite worth it.

Many people say, “Wow, it’s a big pain in the ass to fly anywhere.” It still beats the hell out of driving there. The drive to Hawaii is a nightmare. I've probably got the right body content to float there, but I’ll take the plane.

HP: That’s probably a good place to end it.

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