Corey Peterson and her husband, Frank, have tried to do everything in their power to keep their family together under one roof, despite their daughter’s rare medical condition.
Five-year-old Sydney has congenital central hypoventilation syndrome and needs a ventilator to help her breathe. She also depends on a cardiac pacemaker. To keep her at home, rather than in a hospital or other facility, her parents have learned to operate her ventilator, change her tracheotomy tube, give her fluids through a feeding tube in her abdomen and read equipment that monitors her oxygen saturation and carbon dioxide output, among other tasks.
But the Petersons still rely on expensive nursing care, and they are worried that all their efforts won’t be enough in the face of state budget cuts.
The Lisle family is among a group of Illinois parents who filed a class action lawsuit Monday to stop changes to a state program that funds in-home nursing care for 1,050 medically fragile and technology-dependent children.
In their lawsuit filed in U.S. District Court, the Petersons and other parents accuse the state Department of Healthcare and Family Services of trying to implement changes that would force technology-dependent children out of their homes and into institutional care.
Corey Peterson said the family would no longer be eligible for in-home care under new income requirements and could not afford to pay for skilled nursing care in their home, which they estimated could cost as much as $200,000 a year.
“We’re devastated,” she said. “With our current income — both my husband and I work full time — we don’t qualify. We’re worried right now because there’s no way we’re going to have her live in the hospital.”
State officials say few families would be affected by the income requirements and that they are working on ways to help families cope with the changes.
The program restructuring and the outcry from parents opposing it highlight the difficult, even gut-wrenching, decisions being made by a financially strapped state as officials look for ways to save money.
Mike Claffey, a spokesman for the Department of Healthcare and Family Services, said the agency had no comment on the lawsuit.
But he said officials already had been working on a plan to raise about $5.5 million to help fund the state’s medically fragile and technology-dependent waiver program. The money would allow them to increase the income cap from 500 percent to 800 percent of the federal poverty level.
“We think this would help a lot of these families,” Claffey said.
State officials have said that while families need to pick up a bigger share of the costs, only a small fraction — about 5 percent — would no longer qualify for the in-home care because of the new income requirements.
Officials said the program restructuring was needed to help close the state’s budget holes and reflects their desire to create “a single, seamless system of care and oversight.” The changes were part of Medicaid legislation passed by the General Assembly in May and later signed by Gov. Pat Quinn.
Currently, two groups of children born with a range of medical conditions requiring technology to survive receive in-home skilled nursing services — about 500 Medicaid recipients and about 550 others who meet the criteria for an institutional level of care under a special waiver program.
The total cost of services for both groups of children is $187 million, which is paid for by Medicaid, a joint federal-state program.
Illinois started its program for medically fragile and technology-dependent children in 1985 to allow eligible children to remain in their homes rather than be placed into an institutional setting.
One of the incentives at the time was that it was less expensive to treat children at home than in a hospital, said Cindy Budek, a pediatric nurse practitioner at Lurie Children’s Hospital of Chicago, which coordinates care for about 80 children who require a ventilator at home.
“What’s changed is that care in general is much more costly, so even home care can be expensive,” said Budek, who for three decades has been working with children who must use a ventilator.
Skilled nursing service provided in the home costs an average of about $11,000 to about $16,000 monthly, compared to about $55,000 monthly in a hospital, according to the lawsuit.
Starting Sept. 1, parents’ income will be considered in determining financial eligibility for the waiver program. It cannot exceed 500 percent of the federal poverty level, or $115,250 for a family of four. The program previously did not have an income cap.
Co-payments will be established for private-duty nursing for all families at or above 150 percent of the federal poverty limit. The maximum co-payments will be set at the level allowed by federal law, which is expected to be 5 percent of gross family income, according to state documents.
Parents also raised concerns in their lawsuit about what they described as plans to spend less on care by mandating that all medically fragile children receive a nursing-facility level of care as opposed to the current hospital level of care; they said that would reduce in-home funding by about 50 percent. Some parents said they would not be able to keep their children at home at that reduced level of funding. No one at the Department of Healthcare and Family Services was available to answer questions about that aspect of the program, but a question-and-answer sheet prepared for parents says the change to a nursing-facility level of care will not affect eligibility for the program and available services under the restructured waiver program “will be assessed individually, based on medical need.”
In many cases, private insurance covers some cost for children who receive care at home under the waiver, but often insurance does not cover skilled nursing care.
Myra Young, of Chicago, said her family would qualify under the new income cap but cannot afford the proposed co-payments.
Her daughter Letty has a rare muscle disorder called congenital fiber type disproportion, a nonprogressive condition that affects her skeletal muscles only. Letty is ventilator-dependent and tube-fed. She can’t walk and is 100 percent dependent.
“We want to take care of our children,” Young said. “We are doing the right thing, the responsible thing, but we’re going to be penalized.”
In addition to looking for additional money for the waiver program, Claffey said the agency is working on transition plans for families whose children no longer will qualify for services.
“For those who are losing eligibility, we are working with the Division of Specialized Care for Children, which is part of the University of Illinois, to see what level of care they need and what options they have to get alternative care,” he said.
Budek said that, as it is, most families struggle to find private-duty nurses and receive no more than 16 to 18 hours per day of nursing support. The proposed cuts could be devastating, she said.
“My heart really breaks for (these families),” Budek said. “I feel that we’re working really hard to develop a program that supports the care of these medically complex children in the home. I strongly believe that the best place for these kids is with their families.”