Nearly 90 percent live in the home of a parent or relative. More than 15 percent receive no services such as Social Security and Medicaid. The average wait time on the list is more than six years. Nearly 28 percent make below $15,000 a year and 25 percent make between $16,000 and $30,000 per year.
Around 71 percent have been diagnosed with some form of “mental retardation,” the DHS reported, ranging from mild to profound, with profound meaning they have the intellectual age of an infant. Forty-seven percent need a visiting nurse or regular visits to the doctor; more than 12 percent have a life-threatening condition.
Most of those on the list under 18 get some services at school, and many participate in other DHS programs such as Medicaid and vouchers to give caregivers a respite, Lee said.
Still, often the other services are not enough, Lee said.
Felty became an advocate for those on the waiting list after her own ordeal trying to get services for her daughter.
Her daughter, Kayla White, is 24 years old and is mostly blind, has limited communication skills and requires around-the-clock care.
Felty tried to hold down a job at a local church while her daughter was at a public school during the day. But school officials kept calling, saying she needed to come in and help take care of her daughter. The constant care Kayla required at home and school proved too much.
Felty said she began desperately calling government officials.
“I really felt I couldn’t do this anymore by myself,” Felty said. “I remember getting to a very emotional state where I thought ‘I don’t know if I’m going to be able to keep being mom.’”
White eventually moved up on the waiting list and became one of the first to get an in-home support waiver. That allowed her to receive both care and independence-skills training at home.