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Wayne Greene: Skyler Moore and more than 7,000 Oklahomans have been waiting for years for state help, but will the Legislature come through?

Tulsa World - 4/13/2018

Skyler Moore is 27 years old.

He has to deal with seizures, autism, limited speech capacity, troubled vision, and severe mental impairment.

He is incontinent, can't handle his own hygiene or prepare his own meals. He needs a wheelchair most of the time.

He spends his days at home, watching TV or listening to music. If he goes out in public, the stimulation can make him fly out of control.

He's been on a state waiting list for Medicaid-supported assistance since 2007, but there's little hope he'll be getting help anytime soon.

Until help arrives, his care provider will be his mother, Donrae Moore.

Donrae, 58, has one replaced knee and another that needs replacing. They live on two small pensions from her late husband's railroad job and her disability income.

Her parents helped out with Skyler until they died. Now her 21-year-old son does what he can between full-time college and full-time work, but mostly it's all on her.

She worries about what would happen if she had a heart attack or just got to where she couldn't do it anymore.

Donrae says she's pretty much given up on the state ever offering her the sort of help she needs.

"Basically, I just quit trying," she said. "I just quit trying."

In Oklahoma, 7,634 people with IQs below 70 are on a waiting list for Medicaid-funded Department of Human Services assistance. Like Skyler, nearly 1,700 of those people have been waiting more than 10 years.

It's a statewide problem. In Tulsa County, 1,379 people are on the waiting list and 325 of them have been pending for 10 years or more.

Samantha Galloway, executive director of Oklahoma Community Based Providers, said that, practically speaking, the only way anyone comes off the list is through attrition, meaning someone who is getting state assistance dies.

The waiting list is one of the more desperate outgrowths of the state's long-term failure to fund Medicaid services properly. The need for the services keeps growing, but the availability of the services does not.

Nursing homes, hospitals, in-home caregivers and community facilities for the developmentally disabled are worried that at a time when they desperately need more money, legislators might take away a rare influx of federal funding that would allow them to address terrible problems like the waiting list.

It's a complicated issue, and understanding it requires a brief explanation of the complexities of Medicaid finance.

States administer Medicaid, but it's paid for with a mix of state and federal money. Depending on how much poverty there is within a state, the portion paid by the federal government goes up or down each October. Medicaid's Federal Matching Assistance Percentage can go above 75 percent or as low as 50. Oklahoma's current rate is 58.5 percent, meaning for every $100 spent on Medicaid services in the state, federal tax money picks up $58.50.

Only a few years ago, Oklahoma's federal Medicaid match was 66 percent. As federal funding declined, the number of people needing Medicaid services has not. In February 2016, the Oklahoma Healthcare Authority reported 796,189 Medicaid patients in the state. Today, it reports 798,565.

In a desperate effort to stay even, the state had to increase Medicaid appropriations and create voluntary provider taxes for hospitals. Despite that, the rates paid to Medicaid providers were cut and other programs didn't make any progress on long-running problems: Thus, a waiting list of people with developmental disabilities that never gets any shorter.

In October, Oklahoma federal Medicaid matching rate goes to a little under 62.4 percent. Federal taxpayers will pick up $62.40 of every $100 in Medicaid services. So, the previous situation reverses itself. For the same amount of state appropriations, Oklahoma would get much more federal Medicaid funding. Without spending an extra dime, the state could get $50 million more from the federal government to pay for in-home care for developmental disabled and elderly Oklahomans. A flat state Medicaid budget would produce $37 million more for nursing homes and $94 million for hospitals.

But of course, the Legislature could also reduce appropriations to Medicaid, spend the money on other priorities and still keep the amount available in state at its current inadequate level.

Medicaid-funded service providers want legislators to let them keep the Medicaid dividend and use the additional money to address a backlog of problems, including that waiting list that never goes away.

Each of them has a compelling case.

The nursing homes say many of their members are teetering on closing because of rate cuts. Four nursing homes have closed in the past six months and more are in serious financial distress because of the rate cuts, said Nico Gomez of Oklahoma Association of Health Care Providers.

Rural hospitals say they're in much the same situation. Four have closed in the past five years and others have eliminated services to save money. Some 42 of 81 rural facilities in the state are in financial risk, according to the Oklahoma Hospital Association.

Urban hospitals, which are less dependent on Medicaid patients, aren't in such a precarious financial position, but have to deal with capacity issues that are made worse by the need to absorb many of the rural patients. During the peak of this winter's flu season, there were probably 60 days when there were no acute-care beds available in Tulsa hospitals, said Kevin Gross, president and CEO of the Oklahoma division of Ardent Health Services, parent company of Hillcrest HealthCare System.

Galloway said Advantage waiver program in-home providers desperately need to give employees a pay raise. The providers are paying an average of $8.58 an hour and compete for workers with companies like Target, which pays $12 an hour.

And, she said, another $4 million should be dedicated to reducing the waiting list.

Most of the budget attention at the state Capitol in recent weeks has been focused on public schools for good reason. But there's plenty of other state priorities that are also desperate for money.

Donrae Moore says she doesn't begrudge school teachers a penny of the pay raises they've gotten from the Legislature this year.

But she feels the desperate concerns of families like hers are being brushed aside year after year, in part because people don't want to think about the Skylers of the world.

"It's much easier to deal with cute little T-ball teams or kids just being kids, and you don't have to consider what it must be like to have a severely disabled child to look after 24 hours a day. It's not fun. It's not pretty, and it's overwhelming," she said. "The severely disabled are usually out of sight, and when you're out of sight, you're out of mind."

Despite her challenges, Donrae says it could be worse.

Sklyer goes through two bags of incontinence products a week, she said.

"Luckily, Skyler can afford them, but I often wonder about the kids who go through more bags than that. How are they getting by?" she said "You start thinking about that ugliness, and you're going to a whole other place."

 
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