Kelsey Wright, 34, has Leber’s hereditary optic neuropathy plus, a rare mitochondrial disease that usually causes vision loss but in her case has led to dystonia, a neurologic disorder characterized by involuntary muscle contractions, and an inability to use her hands. She also has seizures, communicates by spelling (she has dysarthria, a motor speech disorder), and uses a wheelchair. While she currently lives at home with her parents, Kelsey requires 24-hour professional care, according to her dad, Dan, 67, a certified public accountant in Dallas. “Kelsey is very bright, and when you have someone who’s very cognitively aware, that’s a big issue—we want her to be able to live on her own as long as possible.”

To make that happen, he and his wife have established a special needs trust for Kelsey and appointed a trustee to manage it and make financial decisions on her behalf. They’ve also designated a family friend to make medical and health care decisions on her behalf, and have asked one of Kelsey’s existing caregivers to live with her after they die to help manage her day-to-day needs; the cost will be covered by the special needs trust. “With medical advances, you need to assume that everybody [even those who are physically disabled] is going to live longer than anticipated,” her dad says.

Kelsey has a healthy older brother who is 36, but their parents wanted to make sure the responsibility of caring for her didn’t fall entirely on him. “You don’t want to force somebody into a full-time caregiver for life,” says Dan. “You’ve got to figure out how you can break this responsibility apart and spread the load.”

Attorney Saundra Gumerove agrees. Her daughter Lauren, 33, has a neurologic condition called Sturge-Weber syndrome that’s characterized by a large facial birthmark, seizures, bilateral glaucoma, and, in her case, intellectual and speech-language impairments. Since the age of 24, Lauren has lived in a group home three miles from her mom, along with five women around her age who have similar levels of functionality.

Fran Yanak also wanted to avoid having her other children assume full responsibility for her daughter Christine, now 49, who has a congenital metabolic disease that affects her muscles and brain. By the time she was 6 years old, “we knew she was going to be dependent,” says Yanak, 74, who works as a registered nurse at Akron Children’s Hospital. When Christine was 22, Yanak and her husband bought a group home with a few other families for their dependent adult children. “We didn’t want their siblings to have to be responsible for them on a daily basis,” she explains.

Yanak and her husband also set up an irrevocable trust so that “whatever Christine needs will be funded for the rest of her life.” Every other weekend Christine spends Saturday and Sunday at home with her mother (her father passed away 10 years ago), and Yanak visits her daughter at least once a week. Upon Yanak’s death, “my two older daughters will be her guardians and manage her affairs, but without the day-to-day hands-on care,” she says.

For 20 years Christine was able to work on a janitorial crew until she lost the ability to walk independently (she has ataxia, a neurologic disorder that impairs her fine motor control and her ability to walk). And despite her intellectual disability, Christine is social and creative: Three days a week, she makes artistic cards at a workshop with local artists and has sold them at art and craft fairs. “I think her quality of life is pretty darn good, given all that she’s lost in recent years,” her mother says.

For more information about how to plan for a dependent child’s future, see “Protect Your Child’s Future” in the April/May issue of Neurology Now.