The State of Illinois is beginning to dismantle the Medically Fragile Technology Dependent Children’s Waiver or Katie Beckett Waiver. It is part of the $2.7 billion in budget cuts to health care services. See my letter below to Governor Quinn’s staff.Late Friday afternoon, I learned of the death of Katie Beckett whom this waiver is known for and was initiated by President Regan.

Another important role we play in The Arc is that we are also the State Chapter for Family Voices a national advocacy network for children with special health care needs. Here is their notice of Katie’s passing.

Tony

Dear Family Voices Friends,
 
Katie Beckett’s passing gives us much to remember, much to think about, much to be inspired by.  Her experience changed the lives of thousands of families.
 
While few have the opportunity to have the national impact that Katie had, each of us has opportunities to impact the lives of others. Every day we must decide how we will respond to the circumstances we face. Katie’s example of dignity and commitment in the face of challenge reminds us of the power within ourselves. 
 
A beautiful tribute to Katie, aired on National Public Radio yesterday, is available at the link below:
 
http://www.npr.org/2012/05/19/153076971/katie-beckett-leaves-legacy-for-kids-with-disabilities
 
Katie’s obituary is attached.
 
More about Katie is available at: www.facebook.com/InMemoryOfKatieBeckettand http://www.familyvoices.org/news/latest?id=0184.
 
With love and sympathy to Katie’s family,
 
Nora
 
Nora Wells
Director of National Programs
Family Voices, Inc.
 
LETTER TO GOVERNOR QUINN’S STAFF
 
The Arc of Illinois would like to voice our strong opposition to the changes being proposed Medically Fragile and Technology Dependent Children’s Waiver. We would like to request that the Medically Fragile and Technology Dependent Children’s Waiver be taken out of the Medicaid cut discussions at this time.

While the state is faced with a budget dilemma, what about the children who are facing lives of institutionalization? What about the families whose children are supported by this life saving service who are about to face financial ruin?

The changes on the table right now appear to be contrary to the Governor’s Rebalancing Initiative and the basic tenants of the Olmstead decision.

I would like to recommend that a work group of advocates, families and the administration meet to review options so that a fully informed choice can be made with the best interest of everyone. At this point, there has been very little, if any, public participation in the process of determining cuts and changes now being proposed.

The waiver is up for renewal in the fall so we have time to insure that families are not put at risk.

Again, we would like to request that the Medically Fragile and Technology Dependent Children’s Waiver be taken out of the Medicaid cut discussions at this time.

Sincerely 


Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
 
Tony@www.thearcofil.org