Eighteen years ago, Jacque Clifton was oblivious to the thousands of Kansas families who receive government assistance for the health care needs of their physically and developmentally disabled children.
Then her son Austin was born with Charge Syndrome, making hers one of those families.
“Then we found ourselves in this world that we had no clue existed,” said Clifton, from this small town outside Wichita. “We didn’t know what was wrong — we just knew we had a very sick baby.”
Charge Syndrome is a genetic disease that impairs development. Now at 18 years old, her son functions as a 3-year-old, has limited mobility, is legally deaf and blind, and is highly susceptible to infection.
“He’s just a kid with real specialized needs and needs a lot of assistance, a very structured environment, predictable routines, things like that,” Clifton said. “He will need support and supervision and assistance his whole life.”
Her husband, Steve, is a police officer with good health insurance, but Austin needs far more daily care than it covers, Clifton said.
“If you’re fairly healthy then it’s great insurance,” she said. “But anything outside of the norm — hearing aids, the need to go out of network to different hospitals because you can’t get all of the people at one hospital. We get denials for Austin’s care from insurance quite frequently — but the Medicaid will kick in. Not everything is covered, for sure. But it’s more designed to meet the needs of individuals with higher needs.”
Among the services for Austin that Medicaid has paid for are non-medical supervision, which allows Clifton to work, and in-home nursing visits to provide preventive care.
“It’s designed to help keep him out of the hospital and give him the support he needs at home so he stays healthy. Once you’re in the hospital, any progress that he’s making, any activities we’re working on, just kind of go on hold,” she said. “Having fragile health, a cold can put him out of school for a few weeks at a time.”
Clifton said she doesn’t know how her family would have made it without Medicaid to cover most of the costs — a reality she’s worried she may soon face as KanCare begins Jan. 1.
KanCare is Gov. Sam Brownback’s plan for moving virtually all of the state’s 380,000 Medicaid enrollees into managed care plans run by three for-profit insurance companies: United Healthcare, Amerigroup, and Sunflower State Health Plan, a subsidiary of Centene.
Brownback officials say the goals of KanCare are to improve health outcomes for Medicaid clients while saving the state and federal governments $1 billion over five years — but without cutting the services offered or reducing the rates paid to doctors, hospitals and other Medicaid service providers.
Currently, an independent case manager assesses the medical and in-home service needs of Medicaid clients like Clinton’s son. The assessment is then reviewed by state Medicaid officials, and approved services are contracted out to providers.
Under KanCare, case managers will be employed by the managed care companies, or MCOs.
Clifton said she’s read everything posted on KanCare website and has attended several of the informational meetings about the coming transition to managed care. From what she’s learned, she said her fear is that — while the same services her son has received may be offered — her son’s managed care case manager may not deem those services necessary at the same level.
“From what I understand his services should not change. He should still receive the support that he has. They’ve said that at every meeting — they’re not changing services.”
“But I have no idea what the managed care company is going to say is needed. Will they come in and say he can have these services, but it will be a drastically reduced amount of care? Maybe he’ll only have a few hours a week of support,” Clifton said.
“The fear is, the services are there and they will be available, but it will be the managed care company who decides how much a person gets. That is very scary when I think those companies are also being paid a flat rate to provide all of the care. It would appear to be in the managed care companies’ interest to limit the frequency of services,” she said.
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