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Budget cuts further affect people with developmental disabilities

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Even in this time of state revenue crisis, Wanda Felty remains hopeful and determined to help individuals with developmental disabilities and their families.

Felty can’t pinpoint the exact moment or describe the person who first shared with her about the waiting list for seeking state-paid care for developmental disabilities. It’s a blurry spot in the many years Felty spent desperately trying to find services to help her daughter, Kayla White, while raising her three children and holding down a job.

It came years after learning that her daughter, who is mostly blind and has limited communication skills, qualified for Medicaid’s Personal Care Services. Through the program, a care worker visited Felty’s home to aid White with eating, bathing, dressing and other personal hygiene needs. The Medicaid program became Felty’s lifesaver, freeing up several valuable hours each day for her to concentrate on her other two children and take care of herself.

As White became a preteen, Felty could only imagine what other services her daughter might require in the future. Again, she asked around. Eventually, she landed on Oklahoma’s Department of Human Services (DHS) Developmental Disabilities Service Division’s waiting list. After about five years, the wait ended for Felty and her daughter. Then, a DHS worker visited their home to connect the family to services covered under the Medicaid home and community-based waiver.

Now, Felty helps other families prepare for DHS workers to visit their homes, but also braces them for the long wait ahead. Sadly, she estimates families who sign up now might not see relief for at least a decade, double her own wait time.

“My goal is to support families as much as I can,” said Felty, who meets quarterly with families during waiting list meetings held in Oklahoma City and Tulsa with DHS’ leaders present.

“While you are waiting, who else can help?” Felty said. “Some families don’t know what is available.”

State system

What is clear is there will be a wait.

As of mid-March, 7,312 people with developmental disabilities were waiting for state services. The applications of people who got in line in 2006 are being processed.

In Oklahoma, families with loved ones with conditions such as autism, cerebral palsy, Down syndrome, brain injuries and intellectual disabilities are referred to DHS’ Developmental Disabilities Services Division for services. Those services can include long-term case management, prescription drugs, home health aids, personal or medical care, therapy and job training.

The state provides these services through a federal Medicaid waiver. The state administers Medicaid, but receives a funding match from the federal government. The waiver allows Oklahomans to use the Medicaid funds to cover care in community settings rather than institutions. Recently, Oklahoma closed its last two institutions, located in Enid and Pauls Valley.

Mark Beutler, a DHS spokesman, said DHS officials closed the institutions to shift toward community-based services, which are offered under the wavier. Now, the state serves individuals with developmental disabilities in their homes and communities. In 2015, more than 9,000 individuals with developmental disabilities received state support, according to DHS figures.

“They can be around family and be active in their own community,” Beutler said. “They can have more of a home life than in a facility.”

Judy Goodwin agreed. As the director of Oklahoma Community-Based Providers, Goodwin works directly with a majority of the state-contracted partner agencies providing services to individuals with developmental disabilities.

“I think with the appropriate support, people with disabilities are certainly able to lead fulfilling lives,” Goodwin said. “As long as they get the support.”

Receiving support is becoming increasingly difficult in Oklahoma’s fiscal climate.

Deeper look

More than half of those on the waiting list have waited for services for more than six years. Nearly 1,500 children, ages 7 to 18, have waited longer than five years, according to DHS data provided to Felty. 

For the past decade, the Norman resident has coordinated waiting list meetings. Not long after Felty became involved, she requested specific DHS data, like ages, years waited and if the people utilize other state or federal programs.

There are limits to the amount of information available. For example, there is no record of services requested when individuals sign up for the list. A needs assessment comes when a person comes off the list to receive services.

That’s where Felty sees a conundrum. She finds most families are waiting for help, but don’t know what exactly that help will be. For the state, there is a chance people are waiting for services that could be offered in communities or thorough programs outside of the waiver.

“Every person with a developmental disability does not need long-term support and services through the waiver,” Felty said. “It can be met in the community, not all through state services.”

At a waiting list meeting last year, a woman from Idabel said she had a Hoyer lift to help get her disabled daughter into the bathtub, but the device wouldn’t fit through the bathroom door. The petite women picked up her preteen daughter in the hallway and carried her into the bath. The family was hopeful for a solution through the Medicaid waiver. Instantly, Felty connected the woman with faith-based groups, who perform work on homes to help people with disabilities.

For Felty, the first Medicaid service her daughter received, Personal Care Services, didn’t require the waiver. All she needed was a Medicaid card.

“I wish someone would be the go-to for every one of the families,” Felty said, describing a DHS position responsible for checking routinely on individuals and connecting them to other services while waiting.

Why wait?

This fiscal year, fewer dollars streamed into DHS’ Development Disabilities Services Division. State funding doesn’t match the need and providers saw a percent reduction in reimbursement rates. With a $1.3 billion budget hole for the next fiscal year, DHS leaders don’t expect any additional funding,  Beutler said.

“Last year, providers took a three and one-half percent rate cut,” Beutler said. “If they take any more cuts, the big question is: Will those providers be able to stay in business, and if not, who will take care of the clients they serve? The next fiscal year is shaping up to be rather bleak. This year was bad, but next year has the potential to be worse.”

Additional rate cuts would hurt providers, who are already operating on limited budgets, Goodwin said. Another cut could impact the care and services provided to clients.

“The providers are very fearful,” Goodwin said. “Every one is discouraged. We spent so many years developing this fantastic system with DHS. It looks like, ‘Why did we do that?’ Here we are at a crossroads and all the progress we made is in jeopardy.”

Meanwhile, more than 7,300 individuals with developmental disabilities are without state assistance and waiting. In total, the state estimates more than 60,000 individuals with developmental disabilities live in Oklahoma.

Felty advocates for state leaders to commit additional funding to help move people into services. She said she strongly supports efforts to restructure the list. Also, there are opportunities for community groups to contribute and ease the load on the state’s providers. Creating more adult and children day care programs for individuals with developmental disabilities would help immensely.

“We have to work together,” Felty said. “This is not just a developmental disabilities problem; it’s an Oklahoma problem.”

Print headline: Lifesaver needed, Oklahomans with developmental disabilities face barriers to services and wait times of up to 10 years or longer.

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