Illinois Medically Fragile and Technology Waiver Program Fact by t5p8903


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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:
This Medicaid Waiver program is administered by the Division of Specialized Care for Children
(DSCC) and is called the Home Care Program:

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: or Facebook:
                               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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