Research on Employment Supports for People with Disabilities: Summary of the Focus Group Findings. Health Insurance

Health insurance coverage is especially important for many people with disabilities, as their need for medical services is much greater than that of people without physical or mental impairments. Because of their medical conditions, however, people with disabilities often have difficulty obtaining private health insurance, or face restrictions in the types of services their insurance will cover.

For those receiving SSDI or SSI, eligibility to receive public health insurance was cited as one of the most attractive features of benefit receipt:

  • "It's not just Social Security, it's also the medical benefits. When you're mentally ill and you work just part-time, you get SSI, you get Medicare or Medicaid."

  • "I still have SSI [for my health insurance]."

  • "[In college,] I was on SSI. That's when some changes came about, where you could start making some money on an ongoing basis and then they'd deduct. As long as you were getting $1 in SSI, you retained your Medicaid."

A number of participants described the tension between securing employment and retaining access to health insurance. One participant sought assistance in retaining access to public health insurance while working.

  • "The Community Health Law Project [was] helpful in me getting my disability benefits, because the first time I was denied, and so they were able to help me get them, and even now, [they] help me to keep my medical benefits while I'm working, so I can get work. They've been helpful with that."

Access to health insurance played a key role for many participants in influencing decisions to enter the labor force. Because receipt of public health insurance for people with disabilities is typically linked to receipt of SSDI or SSI, becoming employed can threaten receipt of health insurance. Many focus group participants described struggling with the choice between seeking employment and losing access to SSDI or SSI, and retaining secure access to health insurance:

  • "[Healthcare] is one of the biggest [issues] for me, more than accommodations. If the government really wants to help people continue employment and pay taxes, then find ways to get rid of some of the regulations and stupid rules that prohibit people [from working]. Most people I've ever met, it's like, hell, I don't need the $500 that Social Security gives me [but I need the Medi-Cal]. I can get a good job, but I can't live without my health insurance."

  • "A lot of people don't work because they do not want to lose their coverage, but it was a chance that I had to take, I just could not live on SSDI alone. I still do use long leg braces that Medicare pays for."

  • "With my thing, it's more a matter of medical costs, that there's just no way that any normal person can handle the medical costs. I mean, I have the ability and desire to work, as long as I get a certain medication."

  • "[In] the past three years, each year I've had some sort of major operation, [and] if I didn't have Medi-Cal, I don't know that I could contemplate what would have happened…I got a letter a month or two ago [about] sharing costs. I haven't followed that up. I figured when they learn about it, they'll let me know and until then I'm not in any big hurry to lose my benefits, because I still have a lot of health issues and my job -- even though it's Federal Government -- is still considered temporary, so there's no benefits whatsoever. To lose that Medi-Cal could be catastrophic."

A number of participants emphasized the primary importance of sufficient health insurance coverage over other benefits and employment when facing high medical costs:

  • "[M]y obstacles are all pretty much based on financial matters. I'm sure a lot of people in the room have probably been in the same situation. I got some medication after extensive visits with doctors, and that medication is what allows me to function. They say, ‘Without the medication, you're going to end up probably back where you were.' Unfortunately, the cost of the medication is just ungodly, and even with Medicare, I have a 20 percent responsibility, but that responsibility ends up being close to $10,000 a month, so what do I do?"

  • "My husband has insurance, but I don't have it through my work. If I didn't have it, my medicine is $1,000 a month that we'd have to pay without insurance."

  • "I can't say enough about my insurance [through employer]. Like this little gizmo [scooter] costs $2,300. My medication is $20 per day. If it wasn't for insurance I don't know what I'd do."

In a discussion among blind participants, most reported that having or losing government benefits was not instrumental in making decisions about whether or not to take a job, but that employer benefits were certainly a consideration. As one participant noted, however, that the need to retain access to public health insurance for people with other types of disabilities (for whom medical coverage might be more critical) might be much greater: "I think that impacts people more with high medical expenses more than it impacts us."

Besides high costs, other concerns include the substantial length of time needed to gain Medicare coverage. SSDI beneficiaries must wait two years before they are eligible to receive Medicare coverage.

  • "It's been a long journey, but I at least now have some Medicare coverage."

Another participant pointed out that even after he received Medicare coverage, often he could not get the coverage he requires.

  • "I have Medicare for five more years, they just extended that, [so if] you work you have five years at least, so I'm still on Medicare. But it's still bad, it takes you three months to get an authorization, it's so hard and they deny, deny, deny for what we need. So, that's the hard part."

Many participants described work and other management strategies they had employed in order to retain health insurance coverage. Typically, participants managed their earnings in order to retain Social Security benefits, which, because of the link to public health insurance, allowed them to retain access to public health insurance. For example, one participant said that she only works part-time so that she can avoid the loss of her medical benefits. She previously lost her eligibility for SSI because she made too much money, so now she keeps her earnings low enough to maintain her medical benefits. She said she fears working full-time and losing her benefits because she is never sure when her disability may get worse and require her to cut back hours. If this were to happen without access to her current benefits, she would not know what to do.

Another participant said:

  • "I was able to work part-time by joggling the figures, so I was able to go to work at the college. Then I reached a point where I was making too much but by then [my employer's] Basic Health was available…and then eventually I got on as a permanent classified employee so I have my health benefits through the college. This is a brand new wheelchair that I just got on Friday. The cost of this chair was almost $26,000."

A number of other participants reported negotiating successfully with employers (and others) to prevent loss of Medicaid benefits due to earnings. Participants reported using a number of strategies, including taking time off, shifting responsibilities, working without pay, shifting to part-time employment, and turning down promotions. For example, one participant said that he makes sure that he does not go over the earnings limit, and that his boss keeps tabs for him and tells him when and when not to work.

  • "I can make a maximum of $699 a month, but when I go over that I'm in danger of losing my Social Security, my SSDI. [I get benefits counseling] from the Job Seekers' class about that particular issue. They're willing to intervene for me with my job or with my boss if I'm in danger of going over that."10

  • "I'm getting Medi-Cal, [but] I'm being threatened all the time to be kicked out [if I] work too much. So what I have done the past few years [is] take vacations whenever I could [so as not to make over a] certain amount of money. My employer is real nice about it, they told me to do whatever I have to do."

  • One participant said she works fewer hours at her job in order to maintain her benefits and still collect SSDI. She said that she chose a minimum wage job so that she could work a maximum amount of hours and still stay under the limit.

Participants said that having medical benefits was critical in managing a disability, but that they had difficulty obtaining good information about Social Security benefits and, more importantly, about balancing benefits eligibility and work. Rather than risk losing health benefits, several had tried to limit their income ("I hoped I wouldn't get a raise") or chose not to work at times.

In some cases, participants reported that they were advised by program personnel to manage earnings. Several reported having been advised by VR counselors and others receiving benefits to stay underemployed to keep benefits, while another said:

  • "I can remember quite some years ago, I actually had a caseworker tell me…because I kept saying I want to go to work, I want to go to work…she said ‘the reality is you can't work because if you go to work, you lose your benefits, you have no medical coverage, you have no health coverage, what are you going to do?' This was a caseworker with DSHS and she said ‘I'm telling you this in your best interest.' This was a long time ago because at that time, I would have lost everything."

Several participants described advice they received from health professionals regarding benefit management:

  • "I went to an eye doctor in New York and he was the one who said, ‘You can't work, you're blind!'"

  • "…my joints were going and I was only 30, and my x-rays were flying around the country, with a series of doctors saying, ‘What do we do with this person?' So the doctor was strongly advising me not to work, to buy some time not to be active."

  • "Even though I was qualified with the school district, I kept my own individual insurance because my doctor had told me, when they thought there's a possibility that I might have MS, he said two things. ‘Don't ever let your health care lapse. Don't lose your insurance benefits. It's going to be hard to get it back.' And the other thing is he told me to keep working."

A number of participants indicated that their insurance, whether public or private, did not cover all needed medical care. Participants said they paid for such care out-of-pocket, sought coverage through alternative sources, or found unconventional ways to gain access to needed services:

  • "There might be some clinics that would normally service homeless people that don't necessarily require that you have to have insurance. And some of them are really pretty good because the doctors that go there are really caring people, like Pioneer Square Clinic or something…I think they'll work with you [on medications]."

  • "Pharmaceutical companies have scholarships, also. And all you need to do is write them or ask your pharmacist to call them, send you an application."

  • "I relied on my parents until I was like 18. When my parents benefits stopped, I relied on the public health system, you know, going to free clinics that kind of thing. And, I actually got married because I needed an operation. So that is how I got health benefits."

  • "My doctors gave me samples for like, two years."

  • "When I became independent and started having my own benefits in my name, I got what was called a conversion plan from my father's policy. It's health insurance that I had to pay for, but it supplemented Medicare which didn't have any prescription benefits. This had prescription benefits…When I got my first job, I found that it didn't have very good mental health coverage, so I kept this policy through my first job and even afterwards…until I got my current job."

A number of participants said that even though they considered features of private health insurance carefully before accepting an offer of employment, they were not always able to accurately assess benefits, or to secure the level of benefits they desired:

  • "[There's] no insurance at all in the new occupation that I picked, [although] I didn't actually know that until after I got the job. That was my choice, though. And as soon as I start getting money in, there are places out there for private insurance…Up until this career change, I had full insurance that was covering my medication, [with] the little $10 co-pay thing."

  • "[I had] the best doctor in town at [the mental health center, paid by] Medicaid up until the point I got my job.…It was a long time before I realized that [the MH center] was not covered by my insurance, [and] my doctor wasn't being paid by my insurance agency. Then I finally got my bill and…it put me in a lot of debt.…So I lost my doctor as a result of me getting my job, [and] I've not had as good a doctor ever since.…I get a new doctor every six months, [and] with my particular illness, I have to retrain a physician almost every time I have a new doctor…The logical conclusion is, if I wanted good health, I would have stayed unemployed."

  • "One thing that I'd think would be helpful is government should have some type of program of subsidy for the medication that you need. My new job, I signed up for group health and I [right away] thought, do they cover the medication? I wanted to…be able to work full-time and still afford my medication. Luckily, I found out that my health plan does cover my medications, but there might be other medications that other insurance plans won't cover, and it's hard for a person to get off a system, want to work full-time and still be able to afford the meds."

Many participants described their experiences in searching for employment that would provide access to private health insurance comparable, or superior, to coverage under Medicare or Medicaid.

  • "My family and other people told me ‘because of your medical situation, you need to maintain your medical with the state, you're going to have to look for a particular job so you can keep your benefits and maintain your health.'"

  • "In today's society you can't make a move if you don't have insurance…so people that are [looking for work] these days, they want the benefit package. They're looking at employers, [and asking,] ‘What kind of an insurance package do you offer?' When I came here I had to ask the same thing. I had a wife and a kid to worry about."

  • "In the job that I'm in now, I'm getting health coverage, but…if it's a preexisting condition you have to wait six months before you can get put onto the health plan. You make too much to get it from Medi-Cal, so you're stuck in the middle. All the money that you make has to be spent on meds and all that kind of stuff and you hope you don't have to go into the hospital. It'll be six months before I get out of the minefield. So when you ask do I have health care, basically, not at this point."

Once employed, participants noted that continuous access to sufficient private health insurance was not guaranteed as some employers might choose to make unanticipated and disruptive policy changes:

  • "I work for a small company, so as health insurance goes up, his policy goes up. He changes, so sometimes when he changes, you're forced to change doctors. But right now, that's the only insurance I have, since I'm no longer qualifying for Medicare or Medicaid."

  • "My husband's company changed insurance plans, and I went from paying a $20 co-pay for medications, to 50 percent of the cost. Everybody else thought that was great, but when you have $1,000 a month [in meds], $500 a month was too much. A lot of stress and phone calls later, I found out through a drug company that they have a program that you can qualify for …I was able to go under that and then I only had to pay $30 for medication."

Among participants with access to needed private health insurance through employment, retaining coverage served as one of the main attractions to continued work, regardless of the circumstances of employment:

  • "I think they're trying to get me to quit because there's only one, as far as I can tell, really, really unpleasant supervisor to work for, [and] after about a year they shifted me to him for no apparent reason hoping he would scream at me and yell at me and chastise me, so that I would just quit. That was seven months ago and I have not quit yet. You want to know why? I need the medical benefits so badly. They're worth more to me than the wages are."

  • "The only thing that keeps me on the job is medicine to stay awake. I have to have insurance to pay for the medicine."

  • "Sometimes when…co-workers are just about as insensitive [as they can be…and I'm just about to walk out that door [and never come back], the Lord just kind of reminded me, 'Chris, come on, you've got kids, a family, responsibilities…The reason people work is exactly what you were saying, insurance coverage…that's the reason I need to work, I need to be responsible enough as a parent and adult to say, 'All right, so I don't feel like doing it but I do it because there's a need there.'"