IT IS difficult enough to find a primary care doctor these days. Imagine how much harder it is for parents or guardians seeking treatment for young adults who are intellectually or developmentally disabled. Many are still seeing pediatricians at an age when they should be getting care from internists. Since treating the disabled can often require extra training and time, Medicaid and private insurers should provide higher reimbursements for such cases. And since care of the disabled has now largely moved from specialized hospitals to group homes and family homes, specialized training should be part of standard medical education.
These are the sound recommendations in a report released last week by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities. The report lays out the problems in shifting the disabled to doctors with greater experience with adult conditions, such as high blood pressure or diabetes. Too often, care from internists or family practitioners is delayed, causing conditions to worsen. For some specialties, such as dentistry, it is hard for parents or guardians to find doctors who will accept Medicaid.
Limited access is just one of the problems pinpointed by the report, which was funded by the Boston Foundation. Researchers also see a need for better training of residential staff workers in group homes, who often have difficulty filling out health forms and recognizing when changes in residents are symptoms of health problems. Inadequate training, the report said, "led to erroneous or poor care of patients." The report also cites the hurdle of limited English language ability among residential staff.
Researchers found that once the disabled do find doctors, the quality of care varies widely. Doctors would sometimes do exams on patients in their wheelchairs, not lying down on the examining table. Frequently, doctors made no attempt to communicate directly with the patient. In general, parents and guardians said, healthcare professionals are often "not sensitized to this population."
Other problems mentioned in the report - from extended waits in the doctor's office, to high insurance copays and out-of-pocket costs, to lack of coordination - confront everyone, not just the disabled. But the challenges are only heightened for the disabled and their caretakers.
The picture is not all gloomy. The executive director of Arc, Leo Sarkissian, said Friday, "There are some successes where doctors do figure out how to do the funding and the coordination." Better reimbursements and training of healthcare professionals and group home staff could ensure there are even more success stories.