An author of a study that shows Ohioans with developmental disabilities struggle to get adequate medical care says medical schools should focus more on the issue.
The study revealed that people with disabilities fared worse than others when it comes to their health status, the quality of their health care, access to care, unmet health-care needs and number of hospitalizations and emergency department visits.
“One of the big problems that we saw is that we have these huge health-care disparities and yet we’re not training future physicians to even provide adequate care to patients with such complex needs,” said lead author Jessica Prokup, a third-year medical student at Ohio State’s College of Medicine and a fellow at the Nisonger Center for people with disabilities at Ohio State University’s Wexner Medical Center.
“And not enough people see it as an issue to begin the process of change.”
The study used the 2015 Ohio Medicaid Assessment Survey of nearly 43,000 adults and about 10,000 children or their representatives.
Among findings, 14 percent of children with disabilities reported problems receiving needed care, compared with 2 percent of children without disabilities.
For adults 65 or older, half of those with disabilities reported at least one unmet health-care need, compared with 17 percent of older adults without disabilities.
Further, adults of all ages with developmental disabilities were less likely than other adults to have a primary-care physician who spends enough time with them. People of all ages with disabilities were less likely to have doctors who explained issues well.
Findings were published online Monday in the Annals of Family Medicine.
“Among advocates in the disability community, this is not news to us,” Prokup said. “It’s just a matter of getting the rest of the population to realize it.”
The study defines developmental disabilities as “severe, chronic conditions that impair cognitive and/or physical functioning, are manifest before the age of 22 years, result in functional limitations in at least three major activities of daily living, and require assistance throughout the lifespan.”
Funding for the research came from the Ohio State College of Medicine Roessler Research Scholarship, the federal Centers for Disease Control and Prevention and the Maternal and Child Health Bureau of the federal Health Resources and Services Administration.
Many people with disabilities might struggle to pay for private insurance or its co-pays and deductibles, and instead use Medicaid, which places them at a disadvantage when it comes to care, said Dana Charlton of the nonprofit Ohio Self-Determination Association, which works to empower people with disabilities. She was not involved in the study.
“A lot of health-care providers won’t accept Medicaid as a payment source, so people have a difficult time finding a service provider,” she said.
Jed Morison, superintendent of the Franklin County Board of Developmental Disabilities, said many people with disabilities have communication or transportation problems that could make it difficult to get their health-care needs met.
He said the Nisonger Center has done a good job of helping to identify the problem and increase awareness.
“It’s critically important to make sure that we do everything we can to help people be healthy,” Morison said. “The studies are good to help point that out and help parents, caregivers and others realize, ‘We’ve got be paying attention to this.'”
Health-care providers should go the extra mile for people with disabilities to show that “we value all people,” Prokup added.
“It’s every individual’s right to be provided with the health care that’s needed, and especially individuals with disabilities,” she said. “They have so much value in society, and if we’re not addressing their health needs, even if it takes a little more effort or time or creativity, we are doing them a huge disservice.”
Prokup cited other research in which 81 percent of medical students reported having had no clinical training in disabilities, and 58 percent of medical school deans reported that curriculum focused on disabled patients was not a priority.
“A lot of the root of the problem is that we’re not even training physicians on what to do for these medically complex patients who require a lot of care,” she said.
The study has prompted a change at Ohio State. Prokup said a pilot program last spring allowed third-year medical students to interview a patient with a developmental disability during time spent in a family medicine setting.
“We’re trying to make some steps in the right direction, and we hope other schools will follow suit,” Prokup said.
She also suggests that practicing physicians not be afraid to ask patients with disabilities what their needs are or how they could be provided with better care.