People with disabilities face an array of obstacles to getting health care, and budget cuts and market-oriented “reform” of Medicaid could be making things worse.
Results from a participatory research study of the health care experiences of Medicaid beneficiaries with disabilities will be presented at a town hall meeting Thursday afternoon, with health care consumers and providers commenting on their experiences and possible solutions.
The town hall takes place Thursday, June 27, at 1:30 p.m., at Access Living, 115 West Chicago Avenue. The study was conducted by Access Living’s health policy team and UIC’s Department of Occupational Therapy.
Relatively simple problems, like access to clinics and exam tables for people who use wheelchairs, can lead to significant gaps in care, said Marilyn Martin, policy analyst at Access Living .
Many are examined in their wheelchairs instead of on exam tables, though that’s not considered an acceptable practice, she said. As a result, pap smears and prostate exams are often not given to people in wheelchairs.
With mammogram units that aren’t accessible for mobility-impaired patients, many people go years without cancer-detection exams — and mortality rates for breast and cervical cancer are significantly higher for people with physical disabilities, Martin said.
People in wheelchairs are almost never weighed during exams, she said, so potentially significant information on weight gain and loss is unavailable, and prescriptions for medications are written based on guesses about weight.
State laws that mandate “safe lifting” standards for treating wheelchair users in hospitals and nursing homes don’t extend to clinics and doctors’ offices, she said.
People with mental illness report being treated disrespectfully by doctors, and “providers often don’t believe what consumers are telling them or discount it” with the attitude that “it’s all in your head,” said Martin. “Sometimes this leads to illnesses not being treated.”
Sign language interpreters are often unavailable at hospitals and clinics, Martin said. One survey participant told of spending a week in a hospital for emergency open-heart surgery with no interpreter until he was being released.
One problem is that the federal government has yet to issue regulations for health care providers under the Americans with Disabilities Act, though it was passed 23 years ago, Martin said.
Now Medicaid is being expanded under the Affordable Care Act, one year after the state cut its budget by over $1 billion. But the expanded Medicaid will more closely resemble cut-rate private insurance, with increased out-of-pocket charges for consumers.
For people with extensive health issues requiring regular doctors’ appointments and multiple medications — especially those living on the limited income of SSI disability benefits — higher co-pays mean “people are being increasingly forced to choose which of their conditions they can afford to have treated,” Martin said.