MFTD Waiver Families

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

Contact Your Legislators and the Governor!

Please help us fight reimbursement cuts to private duty nursing! You can use the general sample letter below as a guideline. Send it by email, fax, mail, or hand-delivery to your state senator, state representative, and Governor Rauner.

You can find your reps here:

You can also call 1-844-311-CUTS to be connected directly with your legislators.

Governor Bruce Rauner can be reached at (217) 782-0244 or (312) 814-2121.

Scripts for Calling Legislators and the Governor

1) Ask to speak to someone about Medicaid reimbursement cuts.
3) State that you want to request that home nursing for medically fragile children be immediately exempted from the reimbursement cuts.
4) State that your child is on a ventilator, is critically ill, is extremely medically fragile, or some other brief, general description that does not require too much explanation.
5) State that your child receives home nursing care through Medicaid, and if this care is not provided, the state has determined your child will have to be hospitalized.
6) State that you were just notified that your child's home nursing reimbursement has been cut by 16.75%.
7) If you know what your agency is going to do (cut nurse pay, discharge cases, etc.) say that. If you don't know, state that nursing agencies are dropping cases, not accepting new clients, and cutting nurse pay.
8) State that as a result of the reimbursement cut, you anticipate you may no longer be able to get home nursing, and your child will have to be hospitalized at six times the cost to the state.
9) State that only 8 children need to be hospitalized to erase all of the expected savings of the reimbursement cut when it comes to home nursing for medically fragile kids.
10) State that this reimbursement cut will likely end up COSTING the state more money and is fiscally irresponsible and not cost effective.

Sample letter on reimbursement cuts


Dear Senator ___ or Representative ___,

My name is ____ and I live in your district. I wanted to express concern regarding the 16.75% temporary cut to Medicaid reimbursement, and any future reimbursement cuts in next year’s budget.

Specifically, I want to request that home nursing services for medically fragile children be exempted from these reimbursement cuts.

My child, ___, [fill in a very brief description highlighting their medical technology]. [She/he] can only live at home because of the home nursing care provided by Medicaid. Without home nursing care, the state has determined that my child would have to live in a hospital.

These reimbursement cuts have had an immediate and dramatic effect on children in this program. About half the nursing agencies that participate in this program have already said they will not accept Medicaid clients any longer. Some are discharging children. Many are cutting the pay of nurses, and nurses are already quitting to find other jobs. Some children who are in the hospital have been told they can no longer go home, because nursing agencies and nurses cannot be found.

In fact, if only 8 children in this program end up in the hospital, all savings from the temporary reimbursement cut will disappear.

Home nursing has already experienced a 19% reimbursement cut since 2012, and a 50% reimbursement cut over the past 20 years, accounting for medical inflation. This program was already struggling to meet the EPSDT mandate required by federal law even before the most recent cut, with only 60% of approved nursing hours being provided.

Home nursing services for medically fragile children are absolutely critical. In addition, they are cost effective, since hospital care is six times more expensive. In fact, home nursing care saves the state about $324,000,000 per year.

But if children like my [son/daughter] are unable to receive home nursing care due to reimbursement cuts, the costs for these children will rise considerably as more and more of them end up hospitalized.

Illinois needs to make smart financial decisions to truly save money. Cutting reimbursement for the most vulnerable and medically fragile children in the state will not save Illinois money. It will COST money as more children are shifted to hospitals and institutions.

Please help us get an immediate exemption for pediatric private duty nursing from this and future reimbursement cuts.

Thank you for your assistance with this matter.

[Your name and contact info]