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On January 1, 2017, the KHI News Service became part of KCUR public radio’s new initiative, the Kansas News Service. The Kansas News Service will continue to cover health policy news and broaden its scope to include education and politics. All stories produced by the former KHI News Service are archived here. Stories and photos may be republished at no cost with proper attribution and a link back to

Federal officials question Kansas disability support policies

CMS seeks more information about KanCare change made as part of budget-balancing cuts

By Andy Marso | October 24, 2016

Federal officials Monday opened their regional office in Kansas City to take feedback on several changes to disability support policies in Kansas — including one they’ve instructed state officials to put on hold.

The Centers for Medicare and Medicaid Services told leaders of the Kansas Department of Health and Environment and Kansas Department for Aging and Disability Services earlier this month they cannot implement a change to the “capable person” policy — one of two changes to home and community-based disability support services made in May to help balance the state budget.

Federal officials also have instructed the state to provide more information about the elimination of a waiting list for Kansans with physical disabilities who requested such services. KDADS announced in August that the list was eliminated, but CMS officials say they have questions about whether Kansans were dropped from the list improperly.

Angela de Rocha, a spokeswoman for state agencies including the Kansas Department for Aging and Disability Services, said the agency will abide by CMS requirements for the capable person policy after it receives more federal guidance.

"The agency has requested a technical assistance call with CMS to discuss the process," de Rocha said.

De Rocha said the agency has also provided CMS "extensive documentation" about the waiting list for services for Kansans with physical disabilities.

The inclusion of home and community-based services in KanCare was one of the most controversial aspects of the state’s 2013 switch to managed care Medicaid administered by three private insurance companies.

Legislators and Gov. Sam Brownback agreed to “carve out” the disability support services for one year to conduct voluntary pilot programs, but since 2014 those services have been included in KanCare.

Brownback has said including the support services in the same plan as medical services for Kansans with disabilities allows for better coordination of their care and leads to improved health and lower Medicaid costs, which in turn means more services can be provided to Kansans on waiting lists.

Photo by Andy Marso/KHI News Service Tim Keck, interim secretary of the Kansas Department for Aging and Disability Services.

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Tim Keck, interim secretary of the Kansas Department for Aging and Disability Services, said in a Wichita Eagle opinion column published Monday that some criticisms of KanCare are politically motivated.

Keck said the state is providing 36 percent more home and community–based services since switching to KanCare and the program’s care coordinators are helping Kansans with disabilities receive the proper level of medical services and daily supports.

“Individuals with disabilities who are on the KanCare waiver programs are receiving all the care and services for which they have a demonstrated need,” Keck said. “If they or their families don’t believe that is the case, there is a robust, multi-level appeals system in place to allow them to challenge such decisions.”

But providers of the support services say the change has led to service cuts, and some legislators have predicted new talks next session on removing them from KanCare.

Meanwhile, the state is preparing to submit its application to CMS to renew KanCare amid new levels of federal scrutiny.

Capable person change

The state announced the capable person policy change as a small part of $56 million in budget-balancing Medicaid cuts.

It and another change to how the state reimburses those who provide disability support services were expected to save the state $1.3 million each.

A state spokeswoman said the change would make for stricter enforcement of an existing federal rule limiting what reimbursements are allowed for routine daily tasks like cooking and laundry done for people with disabilities if they have another person living in their house capable of doing them.

Providers said they were concerned about how the change would be implemented.

James Scott, associate regional administrator for CMS, told state officials in a letter dated Oct. 12 that after reviewing the change his office “found a number of corrections and improvements we would like to suggest.”

Scott said his office found “inconsistencies” between how the state had changed the policy and the waiver agreements Kansas had signed with federal officials to implement KanCare.

Scott said the state must put the change on hold until it fixes the inconsistencies.

“Please be advised that until the waiver amendments are approved by CMS, KDADS must halt the implementation of the capable person policy as written,” Scott wrote. “Implementation of the capable person policy prior to approval of amendments that reconcile the waivers and the policy may result in compliance action by CMS.”

Photo by Courtesy Vicki Distefano Vicki Distefano, far right, says a KanCare policy change reduced support services for her brother Mike from 189 hours per week to 71.25 hours per week. Mike Distefano, middle, is severely disabled due to a traumatic brain injury and lives in Fairway with Vicki, his primary caregiver.

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For Vicki Distefano, the capable person change was part of a reduction in her brother Mike’s services from 189 hours per week to 71.25 hours per week.

Mike Distefano is severely disabled due to a traumatic brain injury and lives in Fairway with Vicki, his primary caregiver. They received a letter last month from Mike’s KanCare company, UnitedHealthcare, alerting them that the reductions in his services would begin Nov. 1.

They’ve retained the services of Leawood attorney Kimberly Kass, who has filed for a fair hearing to appeal the reductions.

“Most of it does designate the capable person policy as the reason for the deduction (in hours),” she said.

Kass said she first read the letter from Scott stopping the capable person change Monday morning.

She said the letter should mean that UnitedHealthcare can’t cut Mike Distefano’s services, but she’s heard nothing from the company to that effect yet.

“They risk the wrath of CMS if they continue to implement it, but I don’t know what that means as far as what CMS is going to do about it,” Kass said. “Are they going to withhold funds? That’s not going to help.”

CMS has not halted the other budget-balancing policy change announced in May: an adjustment in how providers of support services bill the state for services rendered.

But it’s one of the things federal officials took comment on at Monday’s stakeholder meetings in Kansas City.

Waiting lists

CMS officials also are seeking comment on the waiting lists for services, which have been around through several administrations and burgeoned during the recession under Democratic governors Kathleen Sebelius and Mark Parkinson.

The list for Kansans with intellectual and developmental disabilities remains large, but the list for Kansans with physical disabilities has dropped quickly over the last several years.

The U.S. Department of Justice began reviewing civil rights complaints related to the waiting lists in 2012.

That led the state to scrutinize the physical disability list, which was kept by the Centers for Independent Living. The names of more than a thousand people who could not be contacted, were no longer eligible for services or no longer wanted them were removed from the list as the state worked to reduce it.

Advocates for Kansans with disabilities have for years expressed concerns about the culling of the list and whether people who still needed support services were dropped improperly.

Megan Buck, acting associate regional administrator for Medicaid in the Kansas City CMS office, told state officials that the federal agency has heard from KanCare clients who were dropped from the waiting list without being contacted.

“Given the high number of people who have been moved off the waiting list in the last sixth months and the reports of individuals unaware they have been dropped from the list, we are concerned that some people who should have been offered services may not have been contacted properly,” Buck wrote.

Buck added a list of questions about the waiting lists to the bottom of her letter.

Edwina Ware, a 54-year-old who lives near Emporia, said she is one of those dropped from the list.

Ware, who has back problems and uses a walker, said she joined the physical disability waiting list before 2013. But when she checked her status this summer with the help of staff at the Flint Hills Area Agency on Aging, they found she was no longer on the list.

“There was no call; there was no nothing,” Ware said.

She has been reassessed for services and is in the process of completing paperwork to accept a formal offer for them, now that the waiting list is gone.