Caring for special populations
BY LESLIE CHAMPLIN
WEB
EXTRA! Web sites provide disability information |
Dreams amid heartbreak. Setbacks before progress. People toting reams of medical records from subspecialist to subspecialist, often separated by hundreds of miles.
These stories, written by people living with disability and their families, appear on the message boards of Web sites dealing with disability. The authors want help from someone who can care for their family member with special needs and the family.
They want a family physician. But they may not know that.
Failure to seek care
Though 54 million Americans live with disability, many don't get good health care, says the Center for Universal Design at the University of North Carolina, Chapel Hill. The center's report "Removing Barriers to Health Care: A Guide for Health Professionals" says health care facilities often don't have the proper equipment for examining disabled patients. Or untrained staff may unintentionally frustrate or embarrass a disabled person.
 The Special Olympics hopefuls in the photos on this page receive a comprehensive assessment, including history and physical exam, before they ever take the field. |
"As a result, some people with disabilities only pursue medical attention for emergency or acute conditions, making primary and preventive health care services low priorities," the report says.
Logistics can contribute to the problems, says FP Jeffrey Zlotnick, M.D., of Phillipsburg, N.J. Zlotnick and the New Jersey AFP collaborated with Special Olympics New Jersey to develop MedFest, a program that enables developmentally disabled people to participate in sports competition (see story at right).
"Many developmentally disabled people don't see a primary care or family physician regularly because of their living situation, especially as they get older," says Zlotnick. "They might live in a group home where a doctor's visit is possible only when something is seriously wrong. Or they have a long list of specialists and never have the benefit of one doctor knowing them as a 'whole' patient."
Moreover -- thanks to medical advances -- many disabled people live well into adulthood. Their increased longevity requires lifetime involvement of family members who themselves require health care, says Ray Saputelli, executive vice president of the New Jersey AFP.
"It would be ideal if a family could come to a doctor and say, 'This is all of us,'" he says. "Caring for a special needs person can take its toll. A lot of parents are older and they are still caring for their child. They want to come into the doctor's office and be a part of the comprehensive (health care) equation."
Meeting special needs
With a little extra education, family physicians and family medicine residents are more than able and very willing to help special needs families, says Zlotnick. Among his tips:
"Despite all the special needs these patients have, never forget that 'common problems are common,'" Zlotnick advises. "Don't forget the obvious!"
FP Report is published by the
AAFP News Department.
Copyright © 2004 by
American Academy of Family Physicians.