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MFTD Waiver Families

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

Saving Medicaid

The families whose children participate in the MFTD Waiver have overwhelmingly decided to oppose federal changes to the Medicaid program, including block grants or per capita grants for Medicaid. 

The following three letters can be customized for your family and sent to your federal senators and representatives. The first version of the letter is for families in the MFTD Waiver. The second is for your friends, family, doctors, and nurses to send. The third is more general for people in any state.

Letter 1: Illinois MFTD Families

Letter 2: Illinois Friends, Family, Nurses, Doctors, etc.

Letter 3: Anybody nationwide concerned about kids who are medically fragile

This is a helpful resource for identifying your federal congresspeople. This link will allow you to find your Representative by zip code or address.

Senators

  • Dick Durbin
  • Tammy Duckworth

Representatives

  • Mike Bost (R) (12th district)
  • Cheri Bustos (D) (17th district)
  • Danny K. Davis (D) (7th district)
  • Rodney L. Davis (R) (13th district)
  • Bill Foster (D) (11th district)
  • Luis Gutierrez (D) (4th district)
  • Randy Hultgren (R) (14th district)
  • Robin Kelly (D) (2nd district)
  • Adam Kinzinger (R) (16th district)
  • Raja Krishnamoorthi (D) (8th district)
  • Darin LaHood (R) (18th district)
  • Dan Lipinski (D) (3rd district)
  • Michael Quigley (D) (5th district)
  • Peter Roskam (R) (6th district)
  • Bobby Rush (D) (1st district)
  • Jan Schakowsky (D) (9th district)
  • Brad Schneider (D) (10th district)
  • John Shimkus (R) (15th district)

 

Form Letter for Saving Medicaid: MFTD Version

Dear Senator or Representative,

I am writing to you regarding potential changes to Medicaid that have been proposed, specifically implementing Medicaid block grants or per capita grants. I strongly oppose these changes, as they will have profound effects on my child who is medically fragile and technology dependent.

My child participates in Medicaid through a federal-state Medicaid partnership, the Medically Fragile, Technology Dependent (MFTD) Waiver. This home and community-based services waiver allows my child to live at home, go to school, and thrive in a community setting by providing home nursing care to children with extraordinary medical needs. Because my child has significant medical technology, such as a ventilator, tracheostomy, feeding tube, or IV central line, he/she requires nursing-level care at all times.

The MFTD Waiver provides Medicaid to qualifying children regardless of parent income because private insurance typically does not cover home nursing care. The average cost of these services, at $139,846 per year, is far more than even many wealthy families can afford to pay out of pocket. Without this Medicaid program, my child would need to live in a hospital at a much greater cost to taxpayers.

While we don’t know exactly how block or per capita grants would affect this program, the proposals suggest that it would be up to states to decide what populations would receive Medicaid and which services would be covered. In addition, Medicaid block and per capita grants would dramatically reduce the total amount of funds given to states by as much as 40%.

Because children in the MFTD Waiver tend to be costly, Illinois would likely eliminate or reduce services to this population. Just in the past five years we have seen the state try to eliminate the program completely, reduce reimbursement rates significantly in both 2012 and 2015, attempt to eliminate or reduce home nursing care hours for hundreds of children, and fail to actually provide approved nursing care hours for most children in the state. These issues have led to numerous legal battles since current federal protections, especially the EPSDT mandate, ensure Medicaid coverage of home nursing care for children like my child.    

With Illinois’ history of already trying to eliminate or reduce this program, and the likelihood that federal protections such as EPSDT will be abolished or weakened, it is very likely that any changes in Medicaid will have significant effects on my child. We could see the MFTD Waiver eliminated or restricted to very low-income families, home nursing care hours reduced or excluded, and therapies and other services removed or limited.

The Americans with Disabilities Act guarantees my child the right to live in the community, at home with family, instead of in a hospital or an institution. But Medicaid is the actual means of ensuring my child has this right, by providing our family with home nursing care and other services through the MFTD Waiver.

Without the MFTD Waiver, my child would likely end up in a hospital, institution, or in state care because we simply cannot afford to pay for home nursing care out of pocket. If we go without these services, my child is at an exceptionally high risk of dying or suffering further medical complications, since medical technology like ventilators and IV central lines must be very carefully managed by nurses. Ultimately, permanently hospitalizing my child will cost three times as much as simply providing necessary home services through Medicaid.

I urge you to oppose any attempts to convert Medicaid to a block grant or a per capita grant system. These changes will have devastating effects on my child and our family, both in terms of my child’s health and our finances. Medicaid is currently the primary reason my child is able to live at home and be a thriving member of our community.

Thank you for your attention to this matter.

Sincerely,

[your name]

Form Letter for Saving Medicaid: Family/Friend Version

Dear Senator or Representative,

I am writing to you regarding potential changes to Medicaid that have been proposed, specifically implementing Medicaid block grants or per capita grants. I strongly oppose these changes, as they will have profound effects on my [friend or family member’s] child, and other children like [him/her] who are medically fragile and technology dependent.

In Illinois, children who are medically fragile participate in Medicaid through a federal-state Medicaid partnership, the Medically Fragile, Technology Dependent (MFTD) Waiver. This home and community-based services waiver allows them to live at home, go to school, and thrive in community settings by providing home nursing care to children with extraordinary medical needs. Because these children have significant medical technology, such as ventilators, feeding tubes, and IV central lines, they require nursing-level care at all times.

The MFTD Waiver provides Medicaid to qualifying children regardless of parent income because private insurance typically does not cover home nursing care. The average cost of these services, at $139,846 per year, is far more than even many wealthy families can afford to pay out of pocket. Without this Medicaid program, children with medical technology would have to live in hospitals at a much greater cost to taxpayers.

While we don’t know exactly how block or per capita grants would affect this program, the proposals suggest that it would be up to states to decide what populations would receive Medicaid and which services would be covered. In addition, Medicaid block and per capita grants would dramatically reduce the total amount of funds given to states by as much as 40%.

Because children in the MFTD Waiver tend to be costly, Illinois would likely eliminate or reduce services to this population. Just in the past five years we have seen the state try to eliminate the program completely, reduce reimbursement rates significantly in both 2012 and 2015, attempt to eliminate or reduce home nursing care hours for hundreds of children, and fail to actually provide approved nursing care hours for most children in the state. These issues have led to numerous legal battles since current federal protections, especially the EPSDT mandate, ensure Medicaid coverage of home nursing care for children.    

With Illinois’ history of already trying to eliminate or reduce this program, and the likelihood that federal protections such as EPSDT will be abolished or weakened, it is very likely that any changes in Medicaid will have significant effects on children who are medically fragile. We could see the MFTD Waiver eliminated or restricted to very low-income families, home nursing care hours reduced or excluded, and therapies and other services removed or limited.

The Americans with Disabilities Act guarantees children who are medically fragile the right to live in the community, at home with family, instead of in a hospital or an institution. But Medicaid is the actual means of ensuring that children who are medically fragile have this right, by providing families with home nursing care and other services through the MFTD Waiver.

Without the MFTD Waiver, children who are medically fragile likely would have to live in hospitals or be given up to state care because it is impossible to afford home nursing care out of pocket. If these children go without these services, they are at a much higher risk of dying or suffering further medical complications, since medical technology like ventilators and IV central lines must be very carefully managed by nurses. Ultimately, permanently hospitalizing children who are medically fragile costs three times as much as simply providing necessary home services through Medicaid.

I urge you to oppose any attempts to convert Medicaid to a block grant or a per capita grant system. These changes will have devastating effects on children who are medically fragile and their families, both in terms of health and finances. Medicaid is the primary reason that children who are medically fragile are able to live at home and be thriving members of our community.

Thank you for your attention to this matter.

Sincerely,

[your name]

Form Letter for Saving Medicaid: National Version

Dear Senator or Representative,

I am writing to you regarding potential changes to Medicaid that have been proposed, specifically implementing Medicaid block grants or per capita grants. I strongly oppose these changes, as they will have profound effects on children who are medically fragile and technology dependent. These proposals would especially affect children who rely on home nursing care to manage ventilators, tracheostomy tubes, feeding tubes, or central intravenous lines.

In most states, children with extraordinary medical needs receive Medicaid coverage, regardless of parent income, through a variety of home and community-based services waivers or the Katie Beckett option. When these programs were first developed under Ronald Reagan, they allowed children who had been living in hospitals to finally return home, at a much lower cost to taxpayers, by providing Medicaid coverage that filled gaps in private insurance coverage.

Particularly important is Medicaid’s coverage of home nursing care and personal care, which private insurance typically does not cover. With these services costing as much as $200,000 per child annually for the most severely affected children, it is impossible for even wealthy families to foot the bill without Medicaid assistance. Home nursing care allows these children to live at home, go to school, and thrive in the community.

While we don’t know exactly how block or per capita grants would affect these programs, the proposals suggest that it would be up to states to decide what populations would receive Medicaid and which services would be covered. In addition, Medicaid block and per capita grants would dramatically reduce the total amount of funds given to states by as much as 40%.

Perhaps most importantly, federal protections, such as the EPSDT mandate that requires home nursing care and other medically necessary services be provided to these children, would likely be weakened or eliminated entirely. States could decide what services to cover, and in what quantities, regardless of medical needs.

Because children who are medically fragile and technology dependent tend to be costly, states would likely eliminate or reduce services to this population. Just in the past five years we have seen states across the country try to eliminate or dramatically alter these programs. For example, Illinois attempted to cut its program completely, reduced reimbursement rates twice, and attempted to eliminate or reduce home nursing care hours for hundreds of children. Texas has markedly restructured its program, leading to massive cuts and loss of services. Children in Ohio have seen enormous cutbacks in nursing care hours, while children in Florida and California have also seen restructuring and reductions.

With financially strapped states already trying to eliminate or reduce services and costs in these programs, and the likelihood that federal protections such as EPSDT will be abolished or weakened, it is certain that any changes in Medicaid will have significant effects on children who are medically fragile. We could see programs eliminated completely or restricted to very low-income families, home nursing care hours reduced or excluded, and therapies and other services removed or limited.

The Americans with Disabilities Act guarantees children who are medically fragile the right to live in the community, at home with family, instead of in a hospital or an institution. But Medicaid is the actual means of ensuring that children who are medically fragile have this right, by providing families with home nursing care and other services through Medicaid waivers and the Katie Beckett option.

Without these programs, children who are medically fragile likely would have to live in hospitals or be given up to state care because home nursing care is too costly to pay out of pocket for virtually all families. If these children go without these services, they are at a much higher risk of dying or suffering further medical complications, since medical technology like ventilators and IV central lines must be very carefully managed by nurses. Ultimately, permanently hospitalizing children who are medically fragile costs three times as much as simply providing necessary home services through Medicaid.

I urge you to oppose any attempts to convert Medicaid to a block grant or a per capita grant system. These changes will have devastating effects on children who are medically fragile and their families, both in terms of health and finances. Medicaid is the primary reason that children who are medically fragile are able to live at home and be thriving members of our community.

Thank you for your attention to this matter.

Sincerely,

[your name]