If all else fails in the search for a new physician, have the family call its health insurer or managed care organization, Ms. Cannon said. “Often they have a special needs case manager that the family can connect with. They can give them a list of physicians who take that insurance.”
Dr. Cohen noted that young adults with Down syndrome who show signs of depression are often misinterpreted as having early Alzheimer's disease.
“We've known for quite some time that individuals with cognitive disabilities get depressed the same as other individuals for the same kinds of things, such as siblings moving on, loss of a caregiver or a roommate, or death of a parent,” he said. “We have seen a number of young adults who have developed some significant reactions to the loss of support, in terms of depression. They find themselves floundering.”
Obsessive compulsive disorder also may emerge as a coping mechanism.
▸ Talk about living arrangements. Ms. Cannon pointed out that most opportunities for independent living or community living arrangements for young adults with cognitive disabilities are handled through state offices of mental retardation. In Pennsylvania, for example, candidates for housing must prove they have a cognitive disability before the age of 21. Then they're put on a waiting list.
“If families don't do a reassessment of need every year, they can be dropped from the system,” Ms. Cannon cautioned.
She called the transition to adult services “as stressful and as unknown as when parents got the initial diagnosis for the child. It's really important to do educational planning and health care planning, to do as much as we can to help these families know what's really out there.”
For resources on transition planning, visit the “tools and solutions” section of the Healthy and Ready to Work National Center, a federally funded clearinghouse of information, at www.hrtw.org