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 MFTD Waiver Families

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

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HB4736 becomes law!

And it is official! Medically fragile kids cannot be forced into managed care. This law applies to individuals in the MFTD waiver, as well as any other populations who receive home nursing coordinated by DSCC.

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Urge Governor Rauner to Sign HB 4736

We need your help! A bill in the Illinois General Assembly that supports access to healthcare for the most medically complex children just passed the House and Senate and will be sent to the Governor for signature so that it can become law. House Bill 4736 exempts Medically Fragile and Technolog…

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Public Comments on MFTD Waiver Proposed Amendment

To download the full comments, click here.

Public Comments on MFTD Waiver Amendment (IL 0278) on Behalf of MFTD Waiver Families

The following comments on the proposed amendment to the Medically Fragile Technology Dependent (MFTD) Waiver are made on behalf of the more than 300 members of MFTD W…

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HB 4736 Passes the Senate!

HB 4736, the bill that excludes medically fragile kids from managed care, just passed the Senate 56-3! Thanks to Senators Koehler and Curran for advocating for this bill and explaining why it is so important. The bill now goes to Governor Rauner. Let him know you support it! 

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HB 4736 Passes House!

Yesterday, the IL House passed HB 4736, which excludes medically fragile kids from managed care, with a 90-1 vote. Enormous thanks to Rep. Fred Crespo who created the bill, chief co-sponsors Reps. Patricia R. Bellock, Tom Demmer, Carol Ammons, and Gregory Harris, and new co-sponsors Stephanie A. Kif…

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More Testimony on Managed Care

One of our members testified 4/5/2018 in another House Committee subject matter hearing on moving children who are in MFTD or DCFS into managed care Medicaid.

Download Statement Here.

In addition, a physician from Lurie Children's Hospital presented testimony. View his statement here.

State…

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Managed Care Update

We are continuing to advocate to keep kids who are medically fragile and technology dependent out of managed care. We have found an amazing ally in Representative Fred Crespo, who filed a bill in the state House of Representatives to exempt MFTD kids from managed care. The bill is currently in commi…

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Testimony to House Committee on Medicaid Managed Care

One of our members spoke today to the House Appropriations-Human Services Committee on the potential effect of Medicaid managed care on children in the MFTD Waiver. You can read the testimony below or download it here.

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ICAAP Issues "Concerns" over Managed Care for MFTD Children

We greatly appreciate the following letter, written by Illinois' branch of the American Academy of Pediatrics (AAP), that lists out a variety of concerns regarding placing children in the MFTD Waiver into Managed Care. You can read the letter here.

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MFTD Waiver Families Oppose Managed Care

We have been informed that children in the MFTD Waiver are to be moved to managed care as of January 2018. We strongly oppose this move. Read our open letter to Governor Rauner:

DOWNLOAD LETTER HERE

May 15, 2017

Governor Bruce Rauner
Office of the Governor
207 State House
Springfield, IL…

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Federal Judge Orders State of Illinois to Provide Community-based Nursing Care to Children with Severe Disabilities and Medical Conditions

Federal Judge Orders State of Illinois to Provide Community-based Nursing Care to Children with Severe Disabilities and Medical Conditions

For Immediate Release:
April 6, 2016

Contact:
Jill Wohl
773-562-0159, jill@legalcouncil.org
Jane Perkins
919-968-6308, perkins@healthlaw.org
Robert H…

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Big Win in OB vs. Norwood

A huge WIN today in one of our pending lawsuits, OB vs. Norwood. It applies to ALL children receiving nursing through Medicaid, and requires the state to immediately make sure all children are receiving the nursing care hours they have been allotted. It does not specify how the state must meet the r…

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New Lawsuit Filed

The Legal Team of  Robert H. Farley, Jr., the Legal Council for Health Justice through Attorneys Thomas D. Yates and Shannon M. Ackenhausen and the National Health Law Program through Attorneys Jane Perkins and Sarah Somers, have filed a Federal Class Action Lawsuit against the State of Illinois on …

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Cuts to Hours/Budgets in the MFTD Waiver

Many MFTD Waiver children have been reviewed in the past two months by KePro, the independent entity that evaluates medical need for nursing care. The handful of families who have received their award letters have all received reductions in their budgets or hours. In addition, children who were in t…

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The Battle Continues...

Today one of our families was featured in a great article in the Pantagraph. Thank you to the Pantagraph for continuing to help us fight to allow our children to live at home! Click here to read the entire article.

 

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New Pages for Reimbursement Cuts and NPCS Case Advocacy

We've had so much Advocacy going around lately that we have added several new pages devoted to specific current issues. These include the following:

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News Story on Reimbursement Cuts

Update on Reimbursement Cuts

We have begun multiple campaigns against reimbursement cuts, including calls/emails to the governor and legislators, and joining with other groups to form coalitions. See more on the Advocacy Page.

Today the three providers of DME ventilator and other respiratory services to MFTD kids are releasing…

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Open Letter to Governor Rauner on Reimbursement Cuts

Dear Governor Rauner:

When you stated that your budget “provides care for our most vulnerable,” we would like to believe you were thinking of the children in the Medically Fragile, Technology Dependent Waiver, a Medicaid waiver that provides home nursing care to children with ventilators, tracheo…

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Reimbursement Cuts

As of May 1, 2015, there will be a 16.75% reimbursement cut for private duty nursing, along with most other services, in Illinois. These devastating cuts have the potential to lead to severe medical consequences and forced hospitalization of our kids. 

We are just beginning a fight against these…

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20 Blog Posts