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

Many participants (including users of both public and private health insurance benefits) cited health insurance as critical to preserving their families' financial well-being, and to receiving needed medical services and prescription drugs. One participant remarked:

  • "If it hadn't been for my father's insurance, our family would have been bankrupted by my disability."

Another participant who had sustained multiple head injuries during childhood, reported seeing seven different psychiatrists, being in four hospitals, and going to four other doctors for his condition during his lifetime, and that his parents' private insurance covered most of his needs. A woman with cerebral palsy reported multiple hospitalizations, multiple surgeries, and physical therapy, all paid by her father's private insurance.

Many participants experienced some limitation in coverage (due to policy restrictions or switching plans) during childhood, which they said had been detrimental to rehabilitation:

  • A female participant with bipolar disorder stated that when she was young, frequent changes in coverage resulted in her having to go to many different psychiatrists. She believed that not being able to sustain a therapeutic relationship over a relatively long period of time had a negative impact on the efficacy of her treatment.

  • A participant with an autism-like disorder said she had health insurance through her parents when she was young, which was very helpful in providing a diagnosis and treatment. However, at age 18 she was no longer able to remain on her parent's insurance, and this made receiving treatment more difficult for her.

  • Another participant said that having access to appropriate coverage was so important that her father had worked two jobs to preserve coverage for her medical needs.

Other participants described difficulty securing consistent coverage through public health insurance programs:

  • "My parents were divorced shortly after I came down with rheumatoid arthritis. By the time I was 13 or 14, they were divorced, and so insurance coverage was spotty and my mother had to go to get Medi-Cal or Medicare. Then when she went back to work, we were covered again, and so it was off-and-on coverage. It was spotty at first until I was an adult and became employed [and] I got my own medical coverage. As a child, I was first covered by the insurance and then [Medi-Cal] during the teenage years."

  • A participant who received SSI said she was "supposed to get Medi-Cal," but did not, because: "You had to have been on another insurance for six months before the Medi-Cal or Medicare kicked in. By that time I was pretty much sick of Social Security and that's when I got off of it, just about when it was going to kick in, so I never really benefited from that."

One participant described the benefit of having access both to her father's and her mother's insurance:

  • "[My] first hospitalization was paid for by my parents' insurance. Either my father had insurance and then ran out and my mother's picked up, or the other way around, I don't remember which. After my first hospitalization, they took me down to Social Security and I applied for SSDI and SSI at the same time [at about age 22]."

Generally, participants were more likely to describe use of private health insurance than public health insurance during childhood, and those covered by private insurance were more likely to identify and discuss importance of insurance receipt as a critical support.

  • "[When I had my arteriovenous malformation,] I was going to school part-time and working part-time. I had no doctor. I had no health insurance. I had no nothing. [But] my parents had insurance."

  • "My mother took me to meet with a psychiatrist for my depression while I was in high school. The private insurance that my parents had through their work paid for my counseling and medication."

  • "The only medical [expenses] I really had were through my epilepsy and having to go down to University of Colorado in Denver for EEG's a lot. Also, my constant speech therapy and paying for the medications that I had to take when I was epileptic. My mother was working full-time at the time and I was covered under her insurance."

  • "I lived in the hospital. I always went to private specialists. My mom always said, ‘You HAVE to have insurance.'"

Some participants were assisted by charitable organizations that provided free or reduced cost medical care. For example, two participants said that the Shriners' Hospital paid for substantial portions of their medical services:

  • "Almost all of my healthcare when I was a child was received at Shriners' Hospital, which is a philanthropic organization. They provide free care for children with disabilities. [All of my health care was covered] till I was 21; anything I had done was totally free. It was really great. From the time I was a three-year old till I was 21, I was in the hospital no less than 22 times. I had like 21 operations, a bunch of procedures, so they provided the whole gamut of healthcare and support."

  • "They had to take me once a week from Northern California down to San Francisco to try this hospital, do all the doctor stuff. I had lots of reconstructive surgery."

Another participant with hip displasia received medical care at Los Angeles' Orthopedic Hospital, which charges families on a sliding scale. Another participant received free treatment by participating in a research study.

  • "My sister is a medical doctor and she referred me to a doctor who was doing research so I didn't have to pay him, and I got medication…and so that helped a lot."

Many participants reported paying out-of-pocket for medical costs, if not covered by health insurance. One participant was deafened by a head injury and reported receiving little medical care at the time because her parents had to cover the costs. She commented on the lasting consequences of improper treatment:

  • "I didn't even end up in the hospital. I went right home the night of my head injury. [I didn't get] the right treatment at first, which is probably [the reason for] some of the damage to my left ear, because at first my father thought I was faking a lot of it…My first four audiograms, I believe my parents actually paid cash for those. And after that…we did two health fair varieties that referred me for further audiograms of a more acute nature."

At least two individuals described instances in which medical providers did not believe their impairments when tested as children:

  • "In the seventh grade, they sent me to San Juan. It was something that I cannot forget. This doctor didn't believe that I couldn't see. And he was so frustrated. He said to [look at the top row of] letters, and I couldn't see [them]. For him it was difficult to understand that I was almost blind."

  • "I had like a regular hearing and vision test [when I was about eight, and] I did so bad on the test [the nurse] thought I wasn't even taking it. She thought I was just sitting there being obstinate. So she called my parents and said, ‘He refuses to participate.' My dad suggested that maybe he can't hear. That is the purpose of the test. They sent me to a doctor eventually and they confirmed it, I did have hearing loss."