TOPEKA — Delving into the case of a former journalist turned disability activist, a presidential panel pressed state officials Thursday to explain why some Kansans with disabilities no longer qualify for the services they got before the state privatized the health-care system.
Members of the National Council on Disability pointedly put that question to Shawn Sullivan, director of the Kansas Department for Aging and Disability Services, and Susan Mosier, state Medicaid director. The council, appointed by the president to advise his administration and Congress on national disability policy, has held two days of hearings in Topeka this week.
It spent almost all of Thursday focused on KanCare, the state’s new managed-care program for the poor and disabled.
Working through three private-sector insurance companies, KanCare has been managing medical care since Jan. 1. Next month, it’s scheduled to take over management of daily living services for the developmentally disabled.
Disability council member Gary Blumenthal, a former Kansas legislator and social services official, continuously pressed to know how the previous government-run Medicaid system could decide that a disabled person needed 24/7 attendant care, while KanCare thinks the same person can get by with about 40 attendant hours a week.
Blumenthal also questioned whether the managed-care system is using a lower set of standards to make such quality-of-care decisions. Sullivan replied that the standards are the same.
“The difference is pre-KanCare, those weren’t always followed and post-KanCare, they are,” Sullivan said.
He said under the old system, service providers could decide what care a person needed and then provide that care, “which in our estimation is a huge conflict of interest.”
“Essentially the standard is the same; it’s carried out by different people,” he said.
Blumenthal said later that he wasn’t satisfied with that answer. He said the way Sullivan described the old system is not the way he remembers it from when he served from 2003 to 2005 as director of the Wichita office of the Department of Social and Rehabilitation Services – the predecessor of the Department for Aging and Disability Services.
“My experience as a former SRS director was that SRS employees were very consistent and respectful of the manner in which they made decisions,” he said.
He added that state’s Medicaid programs are constantly audited by federal agencies, and he didn’t see how there could be widespread flouting of rules as Sullivan alleged.
As for people facing service cuts, the example at hand was Finn Bullers, a former reporter for the Kansas City Star who has muscular dystrophy and diabetes. He has emerged as the public face of disability-service cuts since he gave emotional testimony about his own situation to the state Legislature’s KanCare oversight committee in October.
Bullers, who is on a respirator 24 hours a day and uses a powered wheelchair to get around, says planned cutbacks in his services could break up his marriage and endanger his health.
Under the state’s traditional government-run Medicaid program, he has had 24/7 attendant care to let him live at home with his wife and two children. He said he’s fighting a proposed care plan that would cut his attendant hours back to 42 a week starting Jan. 1.
“KanCare’s goal is to cut $1 billion in Medicaid over five years on the backs of the most vulnerable,” Bullers told the council. He said it’s unlikely to accomplish that and meet the program’s stated intent of improving care.
Sullivan responded that his department isn’t actually trying to cut $1 billion, but to control growth of the system. He said projections under the old system were for a 7.6 percent growth in spending year-to-year, compared to 5 1/2 to 6 percent with KanCare.
Mosier, the state Medicaid director, told the council there are safeguards built into KanCare to ensure that cost targets don’t influence care plans.
“There will be over 100 contractual quality measures that are required to be met,” she said.
Sullivan also said the cuts Bullers is facing are not as deep as he claims.
In addition to 42 hours of attendant time, Bullers also is being offered some nursing care and as much as 12 hours a day of “sleep cycle support,” essentially a person who would be paid a per-diem rate to sleep at his house and assist him overnight, Sullivan said.
In terms of overall service hours, the total cut would be from 168 a week to 133, Sullivan said.
Bullers scoffed at that, saying the sleep cycle support would be a person paid below minimum wage who wouldn’t be qualified to reset his respirator, suction phlegm from his lungs or administer medication.
Sullivan said the skills and duties of the sleep support person would be up to Bullers to determine.
In addition to Bullers, a parade of other consumers, providers and officials panned KanCare at the council meeting.
Rep. Jim Ward, D-Wichita, said he and other advocates are still hoping to block KanCare from taking over services for the developmentally disabled. Although Kansas is planning for implementation Jan. 1, the state is still waiting for a waiver from the federal Center for Medicaid Services.
Ward said he and others have been in contact with CMS to oppose that waiver, the last hurdle to full implementation of KanCare.
Sullivan said his department has also been in contact with the agency and is confident that the waiver will come sometime this month.
Tom Laing, director of Interhab, an association for developmentally disabled people and service providers, was particularly critical of KanCare and told the national council it’s time “to call it out for what it is.”
He linked it to deep tax cuts passed in the last two years by Gov. Sam Browback and the Legislature, which he said are coming at the expense of the developmentally disabled, “the most under-represented people in Washington and Topeka.”
KanCare and similar programs are “couched as a managed-care movement, when it’s a managed-cost movement,” Laing said.
“This is a way to balance budgets where tax cuts empty the treasury and then the programs are pointed at as the problem.”