Parents and advocates for the disabled called on Illinois officials Wednesday to delay changes to a state program that funds in-home nursing care for more than 1,000 medically fragile and technology-dependent children.
Angry, sometimes tearful parents confronted Julie Hamos, director of the state Department of Healthcare and Family Services, and other agency officials, pressing for details about the changes and what will happen after they are implemented Sept. 1.
They fear that new income restrictions and altered standards of guaranteed care will force their children out of their homes. Most of the children have tracheotomies and rely on ventilators to breathe or need feeding tubes or other medical intervention to survive. Without home- and community-based services, they would require institutional care in a hospital or nursing facility.
Learning that many details have not been worked out, including a transition plan for children who no longer would qualify for the program, they asked Hamos to push back the start of changes.
Hamos told them she would take their request under consideration but could not commit to it.
"We have a state law and cannot make decisions on our own that change state law," she told parents and others who gathered in Springfield and Chicago, linked by videoconference.
Her reply drew an angry response.
"We are not comforted by the lack of a plan," said Margaret Storey, one of the parents. "You have got to get this straight. That's the least you owe these families, as human beings."
The program was restructured to help close the state's budget holes and was part of Medicaid legislation passed by the General Assembly in May and later signed by Gov. Pat Quinn.
Two groups of children born with a range of medical conditions requiring technology to survive receive in-home skilled nursing services funded by Medicaid dollars. Half — about 500 — are Medicaid recipients. About 550 are eligible under a waiver program.
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.
Copayments will be established for private-duty nursing for all families at or above 150 percent of the federal poverty level. The maximum copayments will be set at the level allowed by federal law, which is expected to be 5 percent of family income.
Medicaid is funded with state and federal money, and Illinois is submitting an application to the federal government to renew the waiver program with the changes.
Much of the parents' concern centered on a change in the level of care provided to the children, who now receive an institutional, or hospital, level of care. That standard is being changed to a nursing facility level of care, which some parents view as a step down.
Hamos agreed there was confusion about the issue, which she describes as complicated and difficult to understand, even for state officials, and said officials soon would clarify what the change meant.
State officials have said that although families need to pick up a bigger share of the costs of the program, only a small fraction of the children — about 5 percent — would no longer qualify for in-home care under the new income requirements. The families think the number will be much higher.
Some families and advocates also questioned whether the changes would save a significant amount of money. Skilled nursing services provided in the home cost an average of about $11,000 to about $16,000 monthly, compared with about $55,000 monthly in a hospital, according to a lawsuit parents across the state filed Monday.
The lawsuit seeks to halt the changes to the program, arguing that the plan violates the Americans with Disabilities Act and other federal laws.
Several parents brought their children to the meeting. Fifteen-month-old Alejandro Ako, who has spinal muscular dystrophy, was wheeled into the conference room accompanied by one of his nurses and an arsenal of portable medical equipment and supplies.
"They need to see who they're affecting," his father, Shea Ako, said before the meeting. "I want to show people that these children are not just a bunch of numbers."
Earlier, a group of parents picketed in front of the Department of Healthcare and Family Services offices on South Clinton Street, wearing bright yellow T-shirts that read: "Save the Waiver. Kids Belong at Home."
Article By Deborah L. Shelton, Chicago Tribune
http://www.chicagotribune.com/health/ct-met-fragile-kids-meeting-20120712,0,3129731.story
Copyright © 2012, Chicago Tribune
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Thursday, July 12, 2012
Sick Children Fight Illinois Budget Cuts
CHICAGO (CN) - "Draconian" state budget cuts will force more than 1,000 medically fragile disabled children out of their homes and into institutions and will reduce or eliminate their Medicaid, six families say in a federal class action.
"Effective September 1, 2012, the State of Illinois is unraveling 27 years of community based services to medically fragile children by making Draconian cuts to Medicaid services to the plaintiffs and putative class which puts them at risk of institutionalization in violation of the Americans with Disabilities Act, Rehabilitation Act and Medicaid," the families say in their complaint against the Illinois Department of Healthcare and Family Services and its director Julie Hamos.
The class of severely disabled children who need an in-home nurse at least 12 hours a day seek an injunction against new state rules that will reduce or eliminate their Medicaid benefits, which they claim will force them to be institutionalized.
"The plaintiffs and class consist of approximately 1,050 medically fragile disabled children who currently receive funding from the defendant for skilled nursing services at their home at an average monthly cost between $11,000 to $16,000, depending upon their medical needs, so that they do not have to be institutionalized or hospitalized for their entire life at a rate of approximately $55,000 per month," the complaint states.
The children are 1 to 15 years old, require at least 12 hours a day of nursing care, and their family income exceeds 500 percent of the federal poverty rate, or $95,450 for a family of three.
One child, M.K., "requires intensive vigilant nursing care that consists of: tracheostomy care, monitoring of respiratory and cardiac status, suctioning, monitoring of fragile statue of g-button and trach, meticulous skin care including many topical creams/ointments that are applied daily, and several medications that are administered on a daily basis via g-tube," according to the complaint.
The Illinois Medicaid Home and Community-Based Services Waiver for Children that are Medically Fragile, Technology Dependent (MF/TD) allows "eligible children to remain in their own homes rather than in an institutional setting," the class says.
Under the waiver, "the State of Illinois is required to show that the cost of providing home and community based services is less (or at least cost neutral) than the cost of providing those services in an institution (hospital). The hospital level of care is approximately $55,000 per month and the current cost of providing community based services (Skilled Nursing and Medicaid) is about 1/3rd the hospital level of care so cost neutrality is satisfied," the complaint states.
The new waiver, effective Sept. 1, "eliminates the hospital level of care and substitutes a nursing facility as being the level of care which the medically fragile children require. Accordingly, in order to be cost neutral, the comparable institution (nursing facility) rate would be used instead of the hospital rate. The nursing facility rate will be approximately $9,400 per month, which means the State of Illinois will not approve community based skill nursing and Medicaid funding for the medically fragile children which exceeds the sum of $9,400 per month. ...
"By Illinois reclassifying 99 percent of the persons in the MF/TD Waiver as only needing a nursing facility level of care as opposed to a hospital level care in order to cap or limit the 'medical necessity' level of funding, the state is placing the plaintiffs and putative class at risk of institutionalization," the class claims.
In addition, the new waiver will exclude medically fragile children from families with incomes of over 500 percent of the federal poverty rate.
"A medically fragile child will be unable to receive in-home medically necessary services when the average cost of those services is $188,000 from a family that is excluded because they make too much money (in excess of $95,450 for a family of three)," the complaint states. (Parentheses in complaint.)
The class seeks an injunction prohibiting the new MF/TD waiver from reducing or denying class members' Medicaid benefits.
States across the nation have instituted similar budget cuts since the financial crisis began, which often have been challenged by class actions. As in this case, the classes nearly always object that institutionalizing the sick people will cost far more in the long run.
Lead plaintiff T.B., 5, his parents, Thomas and Margaret Boyce, and the rest of the class are represented by Robert Farley Jr., of Naperville.
Atticle By JACK BOUBOUSHIAN
Courthouse News Service
http://www.courthousenews.com/2012/07/12/48299.htm
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