Parents of adult children with developmental disabilities say state officials are breaking a pledge made during negotiations last year that led legislators to include Medicaid-funded home- and community-based services for the developmentally disabled in the state's KanCare program.
“I have one thing I want to say to the (Kansas) Department for Aging and Disability Services: ‘Liar, liar, pants on fire,’” said Susan Jarsulic, whose 35-year-old daughter, Jayne, has severe physical and developmental disabilities.
Jarsulic and others are upset over reports that a “health home” initiative recently announced by KDADS includes language that encourages – but stops short of requiring – KanCare companies to let developmentally disabled Kansans keep their current case managers if they so choose.
During several hearings last year, state officials promised families that if KanCare were to take over management of services for the developmentally disabled, beneficiaries’ families would be allowed to keep their case managers, who would help them navigate the new system. Legislators, in turn, agreed to the so-called KanCare "carve in."
Case managers play a key role in assessing beneficiaries’ needs, determining which services they need to continue living in community-based settings, arranging for those services and making sure they’re provided.
“My daughter’s case manager has been with her for 18 years now,” Jarsulic said. “She’s wonderful. She knows Jayne, she knows the system and she really knows how to get things done.”
Under the KDADS health home initiative, KanCare health care providers – a group that includes physicians, safety-net clinics, mental health centers and home health agencies – are eligible for additional funding for integrating primary and behavioral health care with services designed to help people live in community-based settings rather than institutional care. A health home is not a place but a concept of care delivery built on close coordination among a patient’s medical providers so that health crises can be prevented or reduced.
The plan, Jarsulic said, included language that encouraged but did not require health home providers to allow beneficiaries to keep their case managers.
The change created a loophole that could lead to some families losing their case managers, she said, undercutting their abilities to advocate for their loved ones.
“Let’s be honest about this,” Jarsulic said. “This is just a back-door way of getting rid of the case managers that we’ve come to know and trust, and letting the managed care companies do whatever they want to do.”
Jarsulic, who lives in Shawnee and runs a Lenexa-based activity program for 10 severely disabled adults, is active in Provider Advocate Coalition of Kansas (PACK), a group that organized a town hall-style meeting here last week that included nearly 200 parents, case workers, service providers, and KDADS Secretary Kari Bruffett.
Bruffett assured the audience that KDADS is in full support of families keeping their case managers.
The decision to encourage rather than require the arrangement, she said, was driven in large part by federal policies that consider case management to be a service that a health home would provide.
“CMS (Centers for Medicare and Medicaid Services) does not allow us to bill for both kinds of services,” Bruffett said, adding that the two services – health home coordination and case management – are considered duplicative.
But there is nothing to stop a health home provider from subcontracting with a beneficiary’s case manager on its own, she said.
And, Bruffett said, anyone who’s assigned to a KanCare health home that doesn’t allow them to keep their case manager can switch to a health home that does or opt out of health homes altogether.
“You don’t have to be in a health home,” Bruffett said. “We’d like you to be in one, but you don’t have to be in one.”
Those who opt out of their health homes, she said, will be allowed to keep their case managers.
It’s not yet known how many providers of health homes intend to contract with enrollees’ case managers.
Marilyn Kubler, a PACK facilitator, said the group is not yet aware of any families losing their case managers.
“We’ll know more in November, which is when the health homes (for the mentally ill) really get started,” she said. “But right now, no, we’re not aware of anybody being told they don’t get to keep their case managers. Our fear is that this is something that could happen, which is why we’re speaking up.”
KDADS launched its health home initiative in late July, limiting enrollment to KanCare beneficiaries who have a serious and persistent mental illness (SPMI).
Bruffett said department officials hope to have health homes for beneficiaries with chronic illnesses – diabetes and asthma, primarily – up and running in January.
According to KDADS records, letters were mailed to 25,770 SPMI beneficiaries across the state, informing them that they had been assigned to a health home provider in their area.
Almost 1,800 of these letters went to beneficiaries who were thought to be developmentally disabled and mentally ill.
Several parents in the audience said they resented KDADS assuming that their developmentally disabled sons and daughters were mentally ill.
Rosemary Maxwell, whose 31-year-old daughter, Tiffany, has cerebral palsy, was among those who were upset.
“Are you kidding me?” Maxwell said. “Anyone who knows Tiffany knows that she is not mentally ill.”
Maxwell said that when she called KDADS to find out why her daughter had been assigned to a health home, she was told that Tiffany had been diagnosed with depression.
“That did not happen,” she said. “Tiffany has never been diagnosed with depression. Somebody made that assumption because she takes Wellbutrin for neuropathic pain and Valium for spasticity.”
Maxwell said Tiffany opted out of her health home assignment because she isn’t mentally ill, her health care already is well-coordinated and she didn’t want to risk losing her case manager.
Other parents complained about not being involved in the process. As a result, they said, they weren’t anticipating the health home assignments.
“There’s no trust,” said Patty Hink, whose 37-year-old son is autistic. “There was before KanCare, but there isn’t anymore.”
Angela de Rocha, director of communication at KDADS, said the agency was committed to finding ways to “communicate better” and restoring the families’ confidence in the system.
“There needs to be more trust, and that goes both ways,” de Rocha said. “We need to trust them and they need to trust us, because everyone’s intentions are good. Everyone’s trying to make things better.”
