Family Voices of Illinois The Arc of Illinois Family to Family Health Information Center www.familyvoicesillinois.org email@example.com 708-560-6703 (voice) 866-931-1110 (toll free for Illinois families) Illinois Medically Fragile Technology Dependent Children’s Waiver – Action Alert Illinois Department of Healthcare and Family Services Considering Cutting this Waiver - Forcing 500 of our state’s most vulnerable children to leave their homes and families and live in hospitals . In the early 1980s, President Reagan highlighted the story of Katie Beckett, a child dependent on a ventilator who lived in a hospital for three years. While in the hospital, Medicaid would cover the costs of her care, but if she went home, she no longer qualified for Medicaid, even though it was much cheaper to care for her at home. Her family made too much money to qualify for Medicaid but not enough to afford the private nursing necessary to bring her home. Since President Reagan and bipartisan lawmakers changed this law to give states options to support home care, virtually every state in the country has had a program to allow children dependent on medical technologies like tracheostomies and ventilators to be cared for in the home by extending them Medicaid coverage. Illinois has had a Medically Fragile Technology Dependent (MFTD) Waiver program since 1985: http://www.hfs.illinois.gov/hcbswaivers/tdmfc.html This Medicaid Waiver program is administered by the Division of Specialized Care for Children (DSCC) and is called the Home Care Program: http://internet.dscc.uic.edu/dsccroot/home_care.asp This MFTD Waiver is set to expire in August if an application for renewal is not submitted by May. With the current budgetary situation, the Illinois Department of Health and Family Services indicated on February 10th they intend to eliminate this waiver. Please contact your legislators and tell them to keep kids from living in hospitals by renewing the Medically Fragile Technology Dependent Waiver for children. For more information and to sign a petition to save this waiver, visit the Save the Waiver website: http://savemftdwaiver.com/index.html or Facebook: http://www.facebook.com/savemftdwaiver Facts About this Program It has enjoyed bipartisan support, and per member costs have stayed nearly flat when accounting for inflation over the last 10 years. It is a program that works! It keeps kids at home and allows them to live in the community and attend school. Most children in this program require a hospital level care if they are unable to receive home nursing, meaning their only alternative to this program is living permanently in a hospital like Katie Beckett did in the 1980s. This also means that there will be less ICU beds available for other children. Permanently hospitalizing children is much more expensive than keeping them at home. A one-month hospitalization in a pediatric hospital costs $55,000, while caring for children at home costs $15,000 on average in this program. Eliminating this Waiver will both cost the state money and separate children from their families. The costs of this program are split between Illinois and the federal government. Allowing the Waiver to expire and replacing it with a limited state plan will mean Illinois will lose millions in federal matching dollars. Even if the Waiver is eliminated, these children will still require one-on-one nurses to attend school, and the cost of nursing will be borne by local school districts without the support of federal matching dollars. Eliminating the MFTD waiver will force some families to choose between their jobs and their children. Many parents will have to quit their jobs or relinquish custody of their children to DCFS to keep them from living in a hospital.
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