The Enid News and Eagle, Enid, OK

April 28, 2013

The waiting list

By Clifton Adcock
Oklahoma Watch

NORMAN, Okla. — The waiting list for Oklahomans seeking state-paid care for developmental disabilities has jumped to more than 7,000, and some families have been on that list for nearly a decade.

The number of people on the list has risen by 24 percent since 2010, when Oklahoma had the third largest waiting list for such services in the nation, according to a University of Minnesota study. Just under half the applicants are children; most are from low-income families.

State officials say the list has expanded because of insufficient state and federal funds to provide additional services. That means more parents and guardians must provide care for the intellectually and developmentally disabled on their own, with sometimes little or no help. The disabled include those with autism, cerebral palsy, Down Syndrome, brain injuries, severe intellectual disabilities and other conditions.

NORCE, SORC Closing

In the meantime, Oklahoma is moving to close its only two large institutions that offer long-term care for the developmentally disabled. Many of those centers’ roughly 400 residents will shift to community homes or their own families’ homes. The residents won’t be placed on the waiting list.

Gov. Mary Fallin has said she wants to improve services for the developmentally disabled, and in March appointed a panel to develop a comprehensive plan that would include addressing the waiting list. The panel’s recommendations are expected next year.

Until more is done, a frustratingly long waiting list remains.

Erin Taylor is among those watching the list. Taped to her office door at the Oklahoma Developmental Disabilities Council, a state agency that helps coordinate services, is a picture of her 10-year-old son Henry Weathers. Just above it is a note with the number 6,757 – the total on the list when she posted the note last year.

Henry is now about No. 4,900.

A friendly boy who loves the Muppets and hopes to work some day as a voice actor in animated movies, Henry was born with a heart condition. He had several surgeries before age 5 and later a heart transplant.

He suffered a brain injury because of his heart condition, Taylor said. He takes medicines that cost about $2,000 a month and gets continuing medical procedures that cost anywhere from $15,000 to $32,000. His health expenses have totaled about $2 million, she said.

The family gets some medical coverage through a federal program for middle-income families, but the financial strain has been tremendous, Taylor said. Once Henry emerges from the waiting list, she hopes he’ll get medical assistance, vocational and job search training, independence-skills training and other services.

“Best case scenario, he will be 17, 18 years old before he gets services,” Taylor said.

Taylor said she wants her son to live in the community and be a productive member of society, which she said more services would help him achieve.

“These services are incredibly important for us,” she said. “I just want my kid to have a great life like I want for my other kids.”

Shifting Care

Since the 1980s, Oklahoma and the rest of the nation have been shifting their approach to caring for the developmentally disabled from an institutional one to home and community-based care.

Between 1985 and 2010, the number of people with developmental disabilities in large, state-run facilities declined by 82 percent in Oklahoma and 72 percent nationally, according to the University of Minnesota study. Residents were moved into family settings or community homes, which have a handful of disabled people, and services were provided there.

States have embraced the model because many of the disabled and their families prefer in-home care, and the state views it as a lower-cost alternative, although the latter is debated.

As part of this trend, Oklahoma will close the Southern Oklahoma Resource Center in Pauls Valley in 2014 and the Northern Oklahoma Resource Center in Enid in 2015. Some family members have protested.

The federal government has enabled the shift with a program that waives the requirement for institutional care. States get federal matching Medicaid funds to provide long-term case management, home health aides, personal care, medical care, therapy, vocational training and other services. Money can also be used to retrofit homes for the disabled.

Oklahoma joined the waiver program in 1986, and the number of people granted waivers has since climbed by more than 14,000 percent. Since 2008, however, the number has slipped – and the waiting list has grown — as funding got tighter and more families applied. The waiting list rose from 5,737 in 2010 to 7,109 in March this year.

An extra $1 million from the Legislature brought the waiting list down, but with more coming on, the net drop was only 11 people by April, said Wanda Felty, a parent advocate and a member of the governor’s panel.

“As far as my knowledge, it’s the worst it’s been,” said Ann Dee Lee, spokeswoman for the Department of Human Services’ developmental disabilities services division.

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 non-emergency applications being evaluated are from October 2004.

“It’s outrageous,” said Bobby Parker of Duncan, who said he has been on the list for around 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 building on Wednesday to push the Legislature to better fund the program.

According to the state DHS, the biggest age group on the waiting list is children between 7 and 18 years old, followed by adults age 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 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, the other services often are not enough, Lee said.

Searching 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, 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 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,’” Felty said.

White eventually moved up on the waiting list and became one of the first to get 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.

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.

The family has dealt with regular trips to school to address issues that arise, hospital and therapy visits and efforts to qualify for SoonerCare, the state’s Medicaid program, to pay for treatments. As a result, Duane had to quit his job as a homebuilder to be a full-time caregiver for his children.

“She jokes about me being a domestic diva,” Duane says, turning to his wife, a teacher, “but we’re not above anything when it comes to their well-being.”

Duane said he would like to return to work, but can’t until daytime services for his children are in place.

Both parents say there will come a day when the boys will need skills their parents can’t provide, such as job and independence-skills training.

“They’re human beings,” Danielle said. “They want to have a reason to get out of bed every day other than to just sit in front of the TV all day.”

But Taylor, Felt and the Howells said 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 into the future, you just hope that it happens,” Danielle said of the waiting list. “But it’s more like it would be a miracle.”

On the Waiting List, for Life

For some people, time spent on the waiting list to get aid for developmental disabilities can seem like a lifetime.

For others, it practically is a lifetime.

Daniel Ferguson spent eight of his short 11 years of life on the waiting list. Just two months after he left the list and was granted access to state-paid services, he died.

When Daniel was born, it was clear he had developmental issues, said his father Rob Ferguson, of Oklahoma City.

“From the first moment, we knew he was going to have a hard time,” Ferguson said.

Daniel had a chromosome disorder, cerebral palsy and profound epilepsy, and he was severely delayed in development, Ferguson said.

Daniel never spoke, but loved to try singing along with opera. He loved classical music, watching football and golf on television, meeting new people and going on car rides.

Around age 6, however, after Rob and Kathleen Ferguson had signed up for the waiting list, Daniel began to regress. He no longer made progress on sorting skills, and he began to lose interest in achieving goals.

“At that point, we really began to think we could use some help here,” Ferguson said. “That’s when we really started to hope they could get to us with some kind of services that would enable us to feel like we could keep him at home and less like we might have to send him away.”

The thought of sending his son to an institution was frightening for the Fergusons.

“We very much wanted him at home,” Rob Ferguson said. “When we started with him, it was a no-brainer. Then in the last five or six years we started to think how his mom and I are getting older, and wondering how much more energy we would have for this.”

In February, Daniel’s name finally came up on the list. A care worker began coming by to work with Daniel in the daytime, giving Kathleen a much-needed break.

With the waiver, plans were made for architectural changes, including adding a new wheelchair ramp and a track system to help transport Daniel around the house.

Those projects wouldn’t get done.

About two months after emerging from the list, Daniel went into cardiac arrest and died on April 4.

Ferguson said he doesn’t know if getting the waiver earlier would have extended Daniel’s life, but it would have made his and his parents’ lives easier.

Oklahoma Watch is a nonprofit organization that produces in-depth and investigative journalism on important public-policy issues facing the state. Look for more NORCE coverage in Enid News & Eagle’s print and online editions on Monday.