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MFTD Waiver Families

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

Information for Other States

We recognize that other states are also planning to reduce or eliminate their programs for children on medical technology.  We have compiled some information from our previous advocacy efforts that we think will be helpful for other states.

  1. Level of Care Information - a document outlining why it is critical to include a "hospital level of care" in any waiver for children on medical technology
  2. Cost Sharing - a document describing why cost sharing does not make money and has negative consequences
  3. Income Caps - our page analyzing why income caps are not appropriate in this type of program
  4. Cost Neutrality - our page explaining how these kinds of programs save money
  5. Waiver Myths and Waiver Facts - our pages that answer common questions

Relevant Lawsuits

  • TB v Hamos - our lawsuit, now withdrawn, that helped prevent Illinois from making changes to its waiver program, which included reducing the level of care, imposing cost sharing, and restricting the program to lower income families.
  • Hampe v. HamosHampe is a class action lawsuit that addresses children who age out of the MFTD Waiver and enter adult programs. Hampe was recently settled.  See the relevant documents hereUpon turning 21, young adults were reclassified as having a "nursing facility" level of care instead of a hospital level of care, and were thereby restricted to about $9400/month in nursing care, which is the cost of care in a nursing facility. Most young adults otherwise received about a 50% reduction in nursing services and hours. The United States Justice Department filed a brief in support of Hampe v. Hamos
  • Florida - In May 2012, a similar class action suit (T.H. v. Dudek) was filed in Florida on behalf of children with medical technology in nursing homes and children at risk of institutionalization. These children had had their nursing care hours systematically reduced over the years. The US Department of Justice submitted a brief that contains arguments relating to EPSDT and how parents cannot be required to provide nursing type care for their own children without the assistance of nurses. Another brief was filed in 2013In July 2013, the Justice Department itself filed suit against the state of Florida for ongoing institutionalization of children. The United States Justice Department also wrote a strongly-worded letter to Florida condemning its policies of forcing children into institutions and failing to provide children with appropriate home and community based services. Florida has changed its programs, and is being closely monitored.
  • Georgia - Georgia has had several successful individual and group cases involving reductions of hours, including, Hunter v. Cook. See the US Department of Justice brief for this case. See the judge's order and memorandum for this case.