Monday, August 30, 2010

Disabled Oklahomans wait and wait for state DHS help

From The Oklahoman:

Wanda Felty (pictured) picked up the telephone and sobbed.

"I think I'm going to have a breakdown if I don't get help,” cried the mother of three girls, including a brain-damaged daughter who bit herself and others, couldn't talk or see and hadn't slept longer than three or four hours a day over the entire eight years of her life.

"I remember thinking I was losing it. I cried my eyes out,” Felty said, recalling a blur of loving but sleep-deprived care of her child Kayla White (pictured).

Felty was one of thousands of parents or guardians of disabled children who have been on the state's waiting list for years. Those on the list need help ranging from after-school child-sitting to job training to a monthly case of diapers to additional therapy.

She felt overwhelmed, forgotten and was languishing on a list that never seemed to change. Then someone with the state — she can't remember who — reached out to her.

Felty had waited about five years. She got one of the state's first emergency in-home support waivers, providing a few hours' after-school help.

But more than 5,700 other disabled Oklahomans are waiting for help. And they've all been waiting for years.

The next person likely to get help has been waiting on that first-come, first-served list since April 26, 2004.

There's just not enough state money to pay for all the needs of those on the list, said James Nicholson, the state director of the Department of Human Service's developmental disabilities services. More than $50 million in state money has been budgeted this fiscal year for the programs designed to help people who were once on the waiting list.

"You can only serve as many people as you have dollars to serve,” he said.

"I think that, obviously, the magic bullet ... would be a tremendous economic turnaround.”

The list was started in 1993 with requests for people ages 3 to 70 years old. Each year, another 1,000 or so people apply to get on the list as word spreads of its existence.

"I don't expect we will ever get help from the program. The list is not moving,” said Stacy Bauter, the divorced mother of 13-year-old Jacob Gaches, born without part of his brain and with fluid on the brain.

Jacob has extensive medical problems, autism, attention deficit disorder, obsessive-compulsive disorder and a developmental delay that prevents him from getting dressed on his own or caring for himself. When he was little, he had a shunt placed with a tube to relieve the fluid on his brain. Years later, he had to spend a summer in a body cast after surgery to realign his hips.

Bauter said she was able to work full time while he was in day care.

But she was suddenly told that he was too old for the day care and had to make emergency arrangements with a family friend. Bauter has a college degree and loves her work helping disabled farmers return to their work. She said she could return to her work full time and be less financially strapped if she could get a little funding for diapers and proper day care for her disabled son.

"People who know me know that when I say help, I need it. I'm not someone that is going to live off the system. I'm not going to do it,” she said.

Sandra Kirkpatrick's 13-year-old son, Bryson Matula, has Down syndrome. He has been on the waiting list since April 2006 and she calls the chances of ever getting help "dismal.”

Kirkpatrick said she worries because every dollar she spends on private therapy, at $120 per hour, is a dollar she can't spend on his future.

"He will need some support throughout his lifetime,” she said. She said research shows that earlier training means disabled people will need less public money later in life.

"Some do jump to the front of the line because it's a critical situation,” Kirkpatrick said. "I'm not opposed to people in more dire situations being in front of me.”

Nicholson said more than 5,100 people are getting help through the waiver services program that Kirkpatrick and other moms are seeking to tap into. The services are capped at about $14,000 yearly for disabled children and about $19,000 yearly for disabled adults.

The parents say they all want to keep their children at home. For the majority, the additional money would do that by covering some expenses not already covered through Medicaid.

The state runs two live-in centers for the disabled, Southern Oklahoma Resource Center in Pauls Valley and Northern Oklahoma Resource Center of Enid.

Ken Talley, president of the Pauls Valley center's Parent-Guardian Association, said they don't want their loved ones moved, despite downsizing and a perceived history of attempts to close the centers.

And Trish Frazier, director of policy and research for the Oklahoma Public Employees Association, said the southern center shouldn't be shut down so the money could be shifted to people on the waiting list.

Nicholson said the demands on the state are so great that better ways of supporting those families must be devised.

"The days of the state accepting sole responsibility for total care and treatment are gone,” Nicholson said.

He said the department is working on a set of programs costing about $9.8 million to provide respite care, some medical supplies and vocational or day programs for adults. The services cap would be lowered to $7,500 yearly per disabled person, if the Legislature approves the proposal.

Meanwhile, there's little relief ahead for the thousands who wait for help.

Felty got the help her family needed. They are still raising their daughter at home. Kayla is a thriving 21-year-old who recently learned to say, "I love you,” in her own special language.

Felty said she's so thankful for the assistance she received that she now works with parents who have loved ones on the waiting list.

"When you see one of us hurting, reach your hand out,” she said. "That's what I'm asking the state to do.

"I see more than 5,000 people asking for help. I'm just one hand. I'd like to see the state reach out a hand and help these families.”