Growing up: Meeting the needs of disabled teens
Growing up: Meeting the needs of disabled teens
Disabled children face transition to adult care
It’s never too early for parents to prepare for their disabled child to become an adult, says Sheila Hickey, LSW, a social worker with the Rehabilitation Institute of Chicago (RIC). "It’s like planning for retirement. You can’t wait until you need it," she says.
Planning for chronically disabled children takes a twofold approach. They must find an adult physician who can treat their disability, and they must find a way to get medical coverage for the bills.
From a medical standpoint, children with chronic disabilities should start moving toward adult care at about age 18, suggests Roslyn M. Gleeson, MSN, RN, CS, spinal dysfunction program coordinator at duPont Hospital for Children in Wilmington, DE.
When childhood diseases grow up
One of the biggest problems in general is finding adult care for children with chronic disabilities. In the past, conditions such as cystic fibrosis and spina bifida were considered childhood problems because patients typically didn’t live to adulthood.
Now that people with such conditions live well into adulthood, they may find problems getting the specialized care they need.
"We can’t see people here after their 21st birthday. That’s why we are looking at setting up a spina bifida clinic for adults," Gleeson says. (For more on an adult spina bifida program, see story, p. 157.)
Gleeson suggests that her young patients start looking for adult care when they reach their mid-teens. Many start seeing an adult physician while still seeing DuPont. "It can be a transition rather than going out one door and in another," she says.
At RIC, staff also encourage teenagers to look for an adult physiatrist and make the transition. "It’s hard for them to say goodbye with a doctor they have had a relationship with for years."
Often the pediatric physiatrist and adult physiatrist work together to help the child make the transition.
Gleeson counsels parents to look ahead to their child’s adult years. When a young patient is approaching the teen-age years, she advises parents to start thinking about what kind of special equipment they will need on their next car so the child can drive it.
Consider all the resources
State vocational rehabilitation programs can help families with some aspects, such as driving lessons and some modifications to vehicles, if they are related to education or vocation, Gleeson says. "This is where supporting letters from physicians come in. It all needs to be started early," she says.
Hickey advises parents to look ahead and start thinking about insurance for their children when they become adults. Insurance coverage often poses a problem for young adults with chronic conditions. Even if they are able to work full-time, they may be denied coverage because of their preexisting condition.
Often, these patients end up on Medicaid throughout their lives. "The picture is changing a little, but we still have adults who are concerned with how much they can work and not lose their Medicaid benefits," Gleeson says.
Typically, private insurance companies will cover children until they are 22 or 23 years old or for as long as they are students, if they have a disabling condition, Hickey says. Once they are on their own, their insurance coverage can depend on their ability to enter the workforce and whether they can secure their own insurance.
If private insurance covered preexisting conditions, such as paraplegia, it often won’t pick up costs until after a year. Hickey suggests signing children up for insurance a year before they reach the age limit of their parents’ policy so they won’t have to wait for benefits.
In Illinois, children living with their parents who have used up their insurance benefits may apply for social security benefits at age 18. Some may be eligible for the Medicaid program, but in some states, such as Illinois, the family has to charge the child rent for the child to receive Medicaid benefits, Hickey says.
Once they qualify for public assistance in Illinois, they also qualify for services through the Illinois Department of Rehabilitative Services. This program will pay for therapy that is educationally or vocationally based.
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