SAN DIEGO – When it comes to helping adolescents with Down syndrome and other cognitive disabilities transition to adult services, the earlier the better, William I. Cohen, M.D., advised at the annual meeting of the Society for Developmental and Behavioral Pediatrics.
Such an approach “makes perfect sense at one level, and at another level it's very hard to do, because some families don't start looking ahead early enough,” said Dr. Cohen, medical director of the Down Syndrome Center of Western Pennsylvania at Children's Hospital of Pittsburgh.
“When you receive a diagnosis of a disorder that is associated with cognitive disabilities, the crushing blow is knowing that forever and ever your child is going to be different. And [parents] begin to think about all of these things in the future. That is what I think terrifies them.”
He pointed out that needs of the adolescent and the family may exist on different levels. For example, the adolescent may want to live independently or in a group home when he or she turns 18, while the family may feel obligated to care for the child at home for the foreseeable future.
“Identify key individuals who can assist in this process and start with the end in mind,” he recommended. “Decide where you want to end up so you can begin early on” heading toward that goal as opposed to it all of a sudden springing up on you: All of a sudden the child is 13–18 years of age with all of these needs.
Dr. Cohen called the transition to adult services “a journey, not a destination. It is a continuous and dynamic process and is variable depending on the individual, family, community, and state in which they live, and the financial and emotional resources [of the family] as well.”
He and his associate, Sheila A. Cannon, offered the following tips on making transition planning run as smoothly as possible:
▸ Identify the educational needs. By the time the child turns 14 years of age, families should identify a course of study that matches the teen's interests and goals, and consider the need for supplemental services such as occupational therapy, speech/language therapy, and physical therapy. Then they should identify community resources and interagency responsibilities.
By law, all people with cognitive disabilities qualify for school services through age 21. Some remain in high school past age 18 to receive such services, but others choose to graduate with their peers and move on to other educational programs in the community that prepare them for employment, money management, and independent living skills.
Ms. Cannon's daughter, who has Down syndrome, was adamant about not going back to high school after graduating. “She took a certificate and opted for a program that is sponsored by another organization and provides vocational training on a college campus,” said Ms. Cannon, coordinator at the Down Syndrome Center of Western Pennsylvania. “So she is with her same-age peers” and the school district provides transportation.
She advises adolescents with cognitive disabilities to undergo a vocational assessment at their local offices of vocational rehabilitation. That way, the local agencies may be able to match an employment need based on their interests and skill levels.
“The transition plan should encourage students to take courses or have some type of planning in nutrition or fitness,” Ms. Cannon said, adding that her daughter attends a behavioral health class at a local college once a week.
Courses that address sexuality and self-esteem also are important. “It's important to have those options available for kids to learn about appropriate social distance and appropriate social interaction,” she said.
▸ Help the family identify an appropriate primary care physician. In the shift from pediatrician/family physician to internist or another physician, the real dilemma for patients and their families is the loss of their medical home, Dr. Cohen said. “Families will ask, 'Who can be my child's primary care physicians?' We ask the parents, 'Could it be your own physician, or someone you have a relationship with and would be willing to take on that role?' “
A key quality for the new physician is a willingness to partner with the family and other clinicians on behalf of the adolescent. “Even if they don't know much about the particular condition, their willingness to partner with the family and use available resources is most important,” Dr. Cohen said.
The new physician must be able to address chronic health problems, understand specific medical vulnerabilities, manage acute illness, and identify adult specialists.