Spina bifida clinic helps teens make the transition
Spina bifida clinic helps teens make the transition
Focus is psychosocial and vocational
Young people with spina bifida learn to make the transition into adulthood at MossRehab’s Eastern Regional Center for Adults with Spina Bifida. Established in 1984, the Philadelphia center was the nation’s first to serve the special needs of adult spina bifida patients.
"Not long ago, spina bifida patients did not live through adolescence. Now that pediatric clinics are affording them that opportunity, they need someone to help them make the transition to adult care," says Margarita Torres, MD, director of the program.
In the past, adult spina bifida patients were discharged from pediatric centers to the care of a family physician with little or no experience with spina bifida, Torres says. Moss-Rehab created a clinic to gives these patients medical and psychosocial support to help them become adults, she says.
By the time spina bifida patients reach age 18, their medical conditions have stabilized. That’s why the MossRehab program focuses more on the patients’ psychosocial and vocational needs. However, the family may still be dependent on the medical system, Torres says. The MossRehab program focuses on psychosocial and vocational issues to help patients and their families shift their focus from pediatric care.
The program uses a social worker and a psychologist to assess the needs of patients, then works with the client and family to create a plan and refer the clients to the appropriate community agencies. For instance, some may be capable of going on to college or vocational school with the proper financial support. That help can come from the state Office of Vocational Rehabilitation.
After the initial evaluation, clients may return to the spina bifida center in six months for help in establishing their personal goals or dealing with a pending medical issue. After that, they usually come back once a year. Some clients who visit their urologist yearly to deal with the most common adult complication in spina bifida, may return to the MossRehab clinic every two years.
Before a client’s annual visit, the center staff prescreens them to determine what services they will need. For instance, if they have seen a urologist in their own community, the center won’t duplicate those services.
The clients are evaluated by a physiatrist, a psychologist, and a social worker and receive physical therapy and occupational therapy as needed. As they reach maturity, a lot of young patients are eligible for Social Security supplemental income. The MossRehab social worker gets involved and helps the family establish eligibility.
Sort out insurance issues
For clients who can be employed and are eligible for health care benefits, the MossRehab staff help get their insurance needs covered. The center puts clients in touch with community resources to help with durable medical equipment and other rehab needs that may not be covered by insurance. For instance, the Office of Vocational Rehabilita-tion helps provide clients with equipment, car modification, and driver training.
Many clients cannot find a job that allows them to get insurance through an employer, or they can do only volunteer work. In this case, MossRehab helps them choose a Medicaid managed care program that allows them to choose a primary care physician. Torres persuades the managed care plans to allow a physiatrist to be the primary care physician for the spina bifida patients.
The center also offers clients information on community services they may need because of their disabilities. The center staff have analyzed the zip code areas where patients live and maintain a current list of hospitals with mammography equipment that can be lowered so patients don’t have to leave their wheelchairs. They also maintain a list of gynecologists who have wheelchair-accessible offices and staff who can assist with the transfer to an examination table.
[Editor’s note: For more information on the adult spina bifida center, contact Margarita Torres at (215) 456-9501.]
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