Resource Finder at Kennedy Krieger Institute
A free resource that provides access to information and support for individuals and families living with developmental disabilities.
Bringing It All Home
Having a child with special needs often makes parents feel as though they are spending their lives driving from one specialist to another, trapped in waiting rooms, and filling out forms. It was no different for John and Amy Thompson. Their son Jake was diagnosed with Rasmussen's syndrome, a brain disorder that causes seizures. Because of the disorder, he underwent a hemispherectomy, a surgery to remove half his brain. After the surgery, Jake needed many different therapies, and the visits to specialists seemed unending.
"When you have a child with special needs, you're often running to the doctor's office," says Amy. "It's really nice to just be at home and have someone come to us for a change."
That someone Amy is referring to is the Community Rehabilitation Program at Kennedy Krieger, an alternative rehabilitation option that occurs right in a family's home or other community settings. The program offers a wide spectrum of services ranging from intensive daily therapy to the use of one or two professionals to help individuals with less severe needs return to their community activities.
"The true test of the success of a rehabilitation therapy is whether it really works for a given patient in their home or community life," says Joan Carney, Kennedy Krieger's director of Hospital-based Education Programs and director for the Community Rehabilitation Program.
"Our therapists deliver services in that natural environment so they problem solve with the family and patient in the context of real life activities," she adds.
"When a patient is ready for this model of treatment, it can be very powerful."
John and Amy echo Joan's sentiments. Every week Jake receives several hours of physical and occupational therapy right in his own living room. John and Amy appreciate the role they've been able to take in their son's therapy and that the therapists have really gotten to know their family.
"I think the Community Rehabilitation Program has been amazing for Jake," says Amy. "You can tell the therapists are really invested in the patients. They get to come into the home and see the whole picture."