She came into his office with acute dental pain, accompanied by her mother and aunt, says Dr. Steven Perlman, a Boston dentist, recounting a health-care nightmare he sees over and over.
The 30-something woman with Down’s syndrome hadn’t been to a dentist in eight years. She had infected gums and abscesses. She was 100 pounds overweight. She had not received a pelvic examination or a pap smear in years. And she had a heart murmur that her doctor had not detected.
“It is outrageous that doctors can get away with providing such little care,” says Perlman, who treats developmentally disabled people. “The neglect is horrific. … And it is sad that caretakers also expect so little.”
The woman, whose name the doctor would not reveal, needed surgery in an operating room for her dental condition. A doctor Perlman called in to examine the woman while she was under anesthesia also detected a gynecological problem that should have been treated years earlier.
Such indifferent care of the mentally retarded systematically plagues our medical system, says Tim Shriver, president and CEO of the Special Olympics.
Shriver, the son of Special Olympics founder Eunice Kennedy Shriver, is releasing a 175-page report to coincide with the winter Special Olympics, taking place in Anchorage, Alaska, from March 4-11. The aim is to bring attention to how this vulnerable population needs help.
The research is believed to be the first of its kind to compile information about the physical and mental health of the mentally retarded.
Conducted by Edward Zigler, Sterling professor of psychology at Yale University, and his colleague Sally Horowitz, the study found that, among the many areas of neglect, medical school curricula do not even address how to care for this population.
Federal and state insurance programs also particularly neglect the retarded: Dental care is covered by Medicaid until a person is 21, but after that very limited care is provided, Zigler says.
While this restriction affects all poor people, the developmentally disabled get short shrift because doctors, who resist Medicaid patients as it is because of low reimbursement rates, especially avoid the mentally retarded, says Dr. Stephen Corbin, a dentist and dean of the Special Olympics University.
Doctors Avoid Mentally Retarded Patients
Doctors often are reluctant to treat mentally retarded patients because many do not communicate and can be difficult to handle, says Zigler. And family members, grateful when a doctor does agree to see a loved one, aren’t aggressive enough in getting good care, the report says.
“It is a blind spot in our health-care system, and the result is scandalous,” Shriver says.
Although physically disabled people get attention, the federal government, insurers and providers are not paying attention to the needs of the mentally disabled, he says.
In an attempt to address the inadequacy, a Senate Appropriations Committee hearing on the issue, chaired by Sen. Ted Stevens, R-Alaska, is to be held Monday in Anchorage.
Perlman also has been active in treating what he calls these severely underserved people. He started a program, called “Special Olympics, Special Smiles” now available in 51 cities. It provides dental care and referrals for other health care for the mentally retarded.
“These people need help,” he says.