TOPEKA — Groups that advocate for Kansans with disabilities and for frail seniors say they will file objections to proposed changes in the waivers defining the state’s approach to Medicaid-funded services that help them live in community-based settings rather than in nursing homes.

“There are service reductions built into the waivers, plain and simple,” said Sean Gatewood, interim director of the Kansas Health Consumer Coalition. “That’s a major concern, absolutely.”

The Medicaid services at issue are provided under agreements with the federal government known as waivers that allow states to use alternative methods to pay for or deliver health care services.

The proposed waiver changes, posted on the Kansas Department for Aging and Disability Services website last month, are subject to federal approval. The deadline for submitting public comment is Saturday, Dec. 20.

“The waivers were crafted without any input on the front end from stakeholders or from advocacy groups,” said Barb Conant, a spokesperson for Kansas Advocates for Better Care, a Lawrence-based organization that represents frail elders, particularly those living in nursing homes.

“There were some public hearings back in November,” Conant said. “But they were after the fact, after the plan was drafted. So there’s a lot of concern about the intent of what’s proposed, how it would be implemented and what impact it will have on the people receiving services.”

KDADS officials have said they hope to forward a proposal to the Centers for Medicare and Medicaid Services regional office in Kansas City, Mo., by Jan. 1.

KDADS Secretary Kari Bruffett said last week that the agency will consider revising the proposed waivers in response to concerns raised during the public comment sessions.

The proposed changes are expected to affect Medicaid-funded services for the frail elderly, people with physical and developmental disabilities, and people who’ve suffered traumatic brain injuries. Those services are part of KanCare, the state’s privatized Medicaid program that is administered by three for-profit managed care companies.

KDADS and the Kansas Department of Health and Environment will host an hourlong forum on the KanCare waivers at 1:30 p.m. Friday — the day before the public-comment deadline — at Memorial Hall, 1210 S.W. 10th, in Topeka.

Here’s a look at some of the advocacy groups’ concerns:

Switch to frail

elderly waiver

Kansans now on the physically disabled (PD) waiver will automatically be transitioned to the frail elderly (FE) waiver when they turn 65, Conant said, which may create a few issues.

“The two waivers are different,” she said. “Sleep cycle support isn’t always available on the FE waiver. And it looks like, under the FE waiver, personal care workers will be paid about 40 cents an hour less than what they make under the PD waiver.”

Sleep cycle support refers to paying someone — often an adult family member — to stay with an individual who should not be left alone at night due to their disability, medical condition or both. Most sleep support workers are paid about $25 per night.

Without sleep cycle support, many recipients of the service would not be able to continue living at home or in other community-based settings.

“If the sleep cycle support issue isn’t resolved and the service is removed, then, yes, it’s likely that some people would have to go into nursing homes to have 24/7 monitoring,” said Ami Hyten, assistant director at the Topeka Independent Living Resource Center.

KDADS, Bruffett said, is aware of the sleep support concerns and is weighing the possibility of “adding some services designed to minimize the impact” of people moving from one waiver to another.

“We certainly have heard concerns about making that a mandatory, rather than an optional, change,” she said. “So we will continue to consider that before we submit the waiver applications.”

Still, she said, the switch is designed to allow the department to reduce the number of Kansans with physical disabilities on its long-standing waiting list for in-home services.

“There is no such waiting list for the frail elderly,” Bruffett said.

According to the proposed changes, people who already are on the physically disabled waiver would remain there. Only those who turn 65 after the waiver is approved would be moved to the frail elderly waiver.

Also, some frail elders whose attendant care workers help with meal preparations could be moved to a home-delivered meals program similar to Meals on Wheels.

“No one has a problem with Meals on Wheels,” Conant said. “But what if the person needs help with fixing all three meals? And does it mean some people will be getting frozen meals delivered once or twice a week?”

Clarifying ‘assisted living’

Cindy Luxem, executive director of the Kansas Health Care Association, a group that lobbies on behalf of the state’s for-profit nursing facilities, said her members are uncomfortable with language that appears to prevent assisted living facilities from being considered community-based settings if they are attached to a nursing home.

“The idea is that if an assisted living facility is part of skilled nursing facility — if the buildings are somehow connected — it should be considered institutional,” Luxem said. “We understand that, but we also know that probably 25 percent of the people on the FE waiver are in some sort of assisted living-type setting. So if these settings aren’t going to be allowed, then where is it we think these people are going to go? Because in a lot of rural communities, that assisted living facility is their only option.”

Case manager changes

Some advocates are concerned that the proposed changes could lead to some Kansans with developmental disabilities losing access to the case managers they’ve come to rely upon for help in determining which services they need, applying for those services and making sure the services are provided.

“There is potential for significant disruption in how case management is performed in the state for persons with intellectual and developmental disabilities,” said Matt Fletcher, a spokesperson for InterHab, the association that represents most of the state’s community-based programs for the developmentally disabled.

InterHab’s concern, Fletcher said, is that the proposed changes eventually will allow the managed care companies now charged with administering KanCare to take over the role now played by case managers.

The worry, he said, is that decisions now based on an individual’s needs will be influenced by the companies’ need to turn a profit.

“If that’s allowed to happen, a lot of case management-type services that are available now will no longer be financially viable,” Fletcher said. “That’s a huge issue if you’ve come to rely on this individual.”

Bruffett said the concern is unfounded. “There are no changes in our DD waiver renewal, at all, that impact targeted case management or that would reduce the service that targeted case managers provide,” she said.

‘Medical model’ for brain injury

The proposed changes also appear to set the stage for a major shift in the state’s approach to caring for people who’ve suffered traumatic brain injuries, said Janet Williams, chief executive at Community Works Inc., an Overland Park-based home health agency that specializes in caring for people with neurologic disabilities, a category that includes brain injuries as well as strokes.

“The focus of the waiver up until now has always been on helping people with compensation strategies, helping them cope with the lasting effects of their disability,” Williams said. “What we’re going to now is more of a medical model where you just fix people. You help them get as far as you think they can go, and then that’s it; you’re done with them. You move on to the next person.”

What are now long-term services, she said, eventually will become short-term and more limited in scope.

“That’s a big change from the way we’ve done it for the past 21 years,” Williams said. “It really gets away from the original purpose of the waiver, which has been to make sure people are self-sufficient in their own home or community with an emphasis on having a job or something meaningful to do.”

Attendant age, education requirement

Steve Gieber is the executive director of the Kansas Council on Developmental Disabilities. He’s also an active member of the Big Tent Coalition, an alliance of advocacy groups and service providers.

He’s concerned about one proposed waiver for services for Kansans with developmental disabilities that would require all attendant care providers to be 18 years old and have a high school degree or GED certificate.

“The current waiver allows you to be 16,” he said. “We don’t know how many 16-year-old attendant care providers there are, but we’re concerned that for some people this may be a limitation that we don’t know about.”