The division evaluates cases in the order they're received, although emergency cases may jump to the front of the line, Dee said. The most recent nonemergency applications being evaluated are from October 2004, according to DHS.
“It's outrageous,” said Bobby Parker, of Duncan, who said he has been on the list for about 10 years. Parker, who is seeking the waiver to help with transportation services because he is unable to drive, was one of 700 people who attended a rally at the Capitol on Wednesday to push the Legislature to better fund the program. “They should make it a priority,” he said.
Numbers tell story
According to the state DHS, the biggest age group on the waiting list is children ages 7 to 18 years old, followed by adults ages 22 to 35. 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 $16,000 to $30,000 per year.
About 71 percent have been diagnosed with some form of “mental retardation,” the DHS reported, ranging from mild to profound. 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 younger than 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, the other services often are not enough, Lee said.
Search for solutions
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, 24, is mostly blind, has limited communication skills and requires round-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.
Felty and her family live near Little Axe. White receives in-home care from a provider agency during the day, allowing Felty to work. Felty has since made it her mission to help others on the waiting list.
“I don't want another family to ever get that close and think that nobody cares,” Felty said.
Lee said the waiting-list issue comes down to money.
“We can't say (to those on the waiting list), ‘Yes, you will get services,' or, ‘No, you won't,' until we work the case,” Lee said, “and we can't work the case until there's money there provided by the Legislature.”
Last year, the total budget for services provided by waivers was $278 million, of which 36 percent came from the state and the rest from the federal government, according to DHS.
“There's not money there to provide the services,” Lee said. “We work as many as we can given what we have.”
Life on the list
Duane and Danielle Howell, of Yukon, have four children. The three oldest boys — 11-year-old triplets named Jacob, Keegan and Harrison — have been diagnosed with autism spectrum and qualify as intellectually disabled. They also have disabilities ranging from spina bifida to apraxia.
But Taylor, Felt and the Howells said that just because families are on a waiting list does not mean they are sitting idle.
They are working to provide what services they can to their children, out of love and the reality of the waiting list.
“It's so far in the future, you just hope that it happens,” Danielle said of the waiting list. “But it's more like it would be a miracle.”