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Kansans with disabilities brace for state's change in services

Wichita Eagle (KS) - 10/3/2015

Oct. 03--Some of Kansas' most vulnerable populations are bracing for a change in which services they receive and how they receive them.

The change will affect thousands of people who are developmentally or intellectually disabled, are elderly and frail, have a traumatic brain injury, are physically disabled, have a serious emotional disturbance or who need long-term medical care.

People who would qualify to live in an institution instead receive home- and community-based care through what's called a Medicaid waiver. The waiver provides additional services usually not allowed by Medicaid, a state and federal health care program for people with low income or who have a disability.

The waivers cover services such as 24-hour intensive care, help with daily living, educational assistance, work assistance and medical care.

The state has seven different classification of waivers, based on the type of disability. The type of waiver determines the type of services the person can get.

But the state is moving to combine all seven classifications into two pools of service: one for kids and one for adults.

The state says it wants to make the switch to offer more services to more people and lower the wait list -- without spending more money.

But some disability advocates question whether that's possible. And some suspect this is a way for the state to cut corners on cost and lessen the number of services people receive.

The change is slated to go into effect July 1, and the state has yet to release a first draft of the plan.

The speed of this transition worries some.

Aldona Carney of Wichita says her 20-year-old son with severe autism represents the critical nature of services.

Her son, Neil, has a co-disorder called pica, which causes persistent cravings to eat nonfood items. Neil requires 24-hour supervision. He has tried to eat light bulbs and drink gasoline.

"There's a lot at stake here," Carney said. "If they don't get their services, they could die."

The plan's overarching flaw, she said, is that it doesn't consider the current difficulty in getting services.

Carney said she already struggles to find medical providers and other caretakers who accept adult patients with severe behavioral problems. Before the state looks to expand its services, she said, it needs to add more providers who accept adults with disabilities.

High expectations

The proposal comes from the two agencies in charge of the waiver system: the Kansas Department of Health and Environment, and the Kansas Department of Aging and Disability Services.

At a recent Wichita public hearing about the change, health and aging officials touted the new waiver as an improvement to the current system.

But disability advocates say they don't understand how the state can offer more services, to more people, with the same amount of money, or less.

"I don't know if the average person completely understands the level of services we're talking about here," said Colin McKenney, CEO of Starkey, a nonprofit that serves people with intellectual disabilities. "These people will need the same support during the first part of their lives through the rest of their lives."

Kari Bruffett, secretary of the Kansas Department of Aging and Disability Services, said savings from fewer emergency room visits and less institutionalized care would cover the costs of added services and more recipients.

Emergency room visits and institutionalized care generally cost more than home- and community-based services.

Bruffett said KDHE actuaries had not finalized cost projections for the change.

Advocates for the disabled question how the state's plan will offer more services to more people with the same amount of money. The waiver has to save money somewhere in order to increase the amount of money spent somewhere else.

Providers worry about pay

The proposed waiver would average reimbursement rates for similar services between the seven waivers.

That's good news for the programs that would receive more money, but bad news for those that would take a pay cut.

Many of the organizations that offer waiver services say they already operate on razor-thin margins. Some providers still receive the same reimbursement rate as they did in 2008.

Starkey, a nonprofit that offers services for people with intellectual and developmental disabilities, is one of those organizations in its eighth fiscal year of stagnant rates.

"If the outcome is we have fewer resources to serve a broader population of people, that seems untenable," said McKenney, CEO of Starkey.

He said Starkey has adjusted to increased standards of care, increased caseloads and higher costs of business with the same rate. But to expand services even further and potentially serve people with different disabilities feels "overwhelming."

Jamie Opat, director of communications for Starkey, said they've had enough trouble recruiting, and keeping, workers already.

"We're competing against pretty much every employer," she said. "Pretty much any job you put in an application, they're going to offer the same wage or better."

And high turnover rates lead to inconsistency, which can be problematic for people with intellectual and developmental disabilities who don't easily accommodate to change.

"If you're being paid $9.25 an hour and are providing some intense support for people, you may or may not want to stay,' she said.

Bruffett, the secretary for aging and disability services, emphasized that there's not yet a specific proposal on how to average provider rates.

"I understand why providers would be concerned about where rates would land -- I absolutely understand that," she said.

Bruffett also said that organizations could remain focused on the disability they specialize in because the state can't force them to expand.

But if organizations don't branch out, that begs the question if the new waiver could successfully expand services.

"I think we've talked to enough providers who have great interest in what this could look like, so I do think there are many providers that think their services could reach across the traditional silos," she said.

The current system

Parents of waiver recipients with intellectual or developmental disabilities say although the seven waivers aren't perfect, they are tailored to the needs of their type of disability. The universal waiver, they say, creates a fear of the unknown and insecurity in services they rely on.

Bruffett reiterated that people would maintain their services offered under their respective waivers.

"For some people it may not change a thing where there's not going to be an advantage for them to receive a different service," she said. "But we do anticipate there will be a broad opening of the tool box.

"We shouldn't let that go, we should grasp it."

The state put together a stakeholder workgroup of about 75 people from around the state. Bruffett said she expects the workgroup would address many of the concerns raised about the change. The workgroup met for the first time Wednesday in Topeka and is scheduled to meet four times in October.

Jeannette Livingston, assistant director of the Sedgwick County Developmental Disability Organization, is part of the waiver stakeholder workgroup.

Livingston said the possibility of dropping some underused services and adding others came up in discussion Wednesday. But, she said, which services would drop remains unclear.

How we got here

The state switched its Medicaid services to KanCare in 2013. At that time, the federal Centers for Medicare and Medicaid Services advised the state to not switch its waiver services for the disabled until a later date because of the time crunch to put KanCare into effect.

Angela de Rocha, director of communications for aging and disability services, the two agencies started discussing a switch to the universal waiver in January. In August, representatives from each agency traveled around the state to release the plan and gather public feedback.

McKenney, from Starkey, related the expediency of the switch to the universal waiver to the expediency of the state's switch to KanCare.

"This thing is already in drive," he said. "It feels a little bit like when KanCare was going into effect. The plan exists, and the statewide listening tours are actually statewide telling tours. I'm not saying that's happening, but that's what it feels like."

Reach Gabriella Dunn at 316-268-6400 or gdunn@wichitaeagle.com. Follow her on Twitter: @gabriella_dunn.

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