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MFTD Waiver Families

Support for families of children in the Medically Fragile, Technology Dependent Waiver

Open Letter to Governor Rauner on Reimbursement Cuts

May 8, 2015

Dear Governor Rauner:

When you stated that your budget “provides care for our most vulnerable,” we would like to believe you were thinking of the children in the Medically Fragile, Technology Dependent Waiver, a Medicaid waiver that provides home nursing care to children with ventilators, tracheostomies, or central intravenous lines. It is hard to imagine a more vulnerable population than children on ventilators, whose every breath literally depends on intensive nursing care provided by Medicaid.

We were understandably shocked, however, when we learned this week that the 16.75% temporary reimbursement cut would apply to children receiving private duty nursing. Other services for vulnerable populations, such as mental health services or hospital services, were exempt from this cut.

We assume it was simply an oversight that pediatric private duty nursing was not exempted. We cannot understand how anyone would target such a medically vulnerable population, especially since doing so would end up costing the state significantly more in hospitalization costs.

If the children in this program are unable to receive their home nursing, they have no alternative but hospitalization, usually in a pediatric intensive care unit. By the state’s own assessment, virtually all are ineligible for nursing homes due to their high levels of medical technology.

Based on 2012 data, we estimate that the 16.75% cut will save the state $853,001 for the approximately 550 children in this program. But if just eight children end up in the hospital during these two months, all savings will be lost.

It only costs an average of $8888 a month in nursing care to keep these children living at home. Care in the hospital, however, costs $56,000 a month for most children. In other words, it is six times cheaper to provide nursing care at home than to hospitalize children.

Hospitalization is not just an empty threat. In fact, in the first week of this reimbursement cut alone, we have been notified that about half of the nursing agencies serving this population have decided to no longer accept children on Medicaid. We have been informed that at least one agency discharged children. In addition, several children who were supposed to come home from the hospital now will remain there because no agencies will take them, at six times the cost to the state. These children alone will likely wipe out most of the anticipated savings of the reimbursement cut.

Many agencies have been forced to cut nurse pay, in some cases down to as little as $15-18 per hour, in order to stay afloat. Nurses are already quitting their jobs, leaving families unstaffed and children at risk for death or serious medical complications. Many of these children are likely to end up hospitalized for weeks or months if they cannot find nurses.

The Medically Fragile, Technology Dependent Waiver is one of Illinois’ fiscal success stories. It saves the state about $324,000,000 every year, and its costs adjusted for inflation have actually decreased most years. But this program can only work if children receive their home nursing services. Children will be unable to receive these services if agencies refuse to care for them, nurses quit due to low pay, and children cannot be discharged from hospitals because nursing is unavailable. In fact, even before this cut, the state was only providing 60% of EPSDT-mandated and state approved home nursing services, almost exclusively due to poor reimbursement.

We ask that you reconsider applying this reimbursement cut to pediatric home nursing, and immediately exempt this population from current and future reimbursement cuts.

Children with ventilators, tracheostomies, and central lines deserve to receive safe and appropriate home nursing care. They deserve to live at home with their families, especially since it is so much more cost effective to care for them at home. They deserve to go to school, so that when they grow up, they can become independent and productive citizens.

They do not deserve to be hospitalized at six times the cost to taxpayers.

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