June 01, 2012

June 1 Washington Update

Greetings from Washington.  This week has been relatively slow with respect to health policy in DC.  Although we usually cover only federal news in this update, today we are providing some information about an endangered Katie Beckett waiver in Illinois. 

Illinois "Katie Beckett" (MFTD) waiver

We have learned from our colleagues in Illinois that its legislature has passed a bill, expected to be signed by the Governor, which would severely curtail eligibility and payments under a Medicaid waiver allowing medically fragile and technology dependent children to be cared for at home (the MFTD waiver).  The current waiver expires at the end of August.  Advocates have not yet given up hope for changing the policy, however, as there is still a chance for additional action during a special session of the legislature.  If you are from Illinois, the most effective thing you can do is write to your state legislators and state administration to oppose changes to the MFTD program.  For more information about the situation, see http://savemftdwaiver.com/index.html.  (To get contact information for Illinois policy makers, click on the "Advocacy" tab.)  You can also sign a petition expressing support for the waiver at http://www.change.org/petitions/director-of-the-il-dept-of-healthcare-and-family-services-not-cut-the-medicaid-waiver-for-medically-fragile-tech-dependent-children.

 In a Family Voices press release about this issue, Julie Beckett (Family Voices co-founder and mother of Katie) said, "This is very disappointing. After 31 years of proving how important home and community-based services are to our children, it breaks my heart that some legislators and states still do not get it."

Family Voices Executive Director Sophie Arao-Nguyen added:

"National Family Voices supports efforts by The Arc of Illinois, Family Voices of Illinois, and other local groups to maintain the MFTD waiver in full force to best serve CSHCN in Illinois within their homes and communities, as well as to save money for the state. These waivers have been proven to work all over the country. We don't want to see a precedent set in Illinois for gutting the waiver."

Senate Appropriations

On June 12th, the Senate Appropriations Subcommittee with jurisdiction over funding for health and education programs is expected to vote on FY 2013 funding levels for key health and disability programs, including the Maternal and Child Health Block Grant, early intervention, and other programs that are important to children with disabilities.  Please be on the look-out for alerts related to this subcommittee action.

   And you didn't think we'd forget, did you?  ...

F2F funding bills (S. 2123 and H.R. 4083)

There were no new cosponsors this week, so the current tally remains 10 House cosponsors, in addition to sponsor Representative Pallone (D-NJ), and seven Senate cosponsors, in addition to Senator Menendez (D-NJ).  If we hope to get the F2Fs re-funded, Members of Congress will need to hear from F2Fs about how effectively they are spending their federal grant funds, and from families about how important F2F services have been in their lives.

If you would like to discuss how best to make this happen, please feel free to contact the policy team.  (Contact information below.)

As we've said before, if your Members of Congress have not yet cosponsored the legislation, please contact them to ask that they do so.  See the guidance at the end of this update or click here now to send a pre-drafted letter to your Representative.  Also, please forward this information to your family, friends, and health care providers, and ask them to contact their Members of Congress as well.  And, if you haven't done so already, please thank your Senator(s) and Representative who have cosponsored the legislation. You can find their contact information by clicking on their names on the list of cosponsors at the end of this update.

Supreme Court.  In a few short weeks, the Supreme Court is expected to announce its decision regarding the constitutionality of the Affordable Care Act.  An amusing cartoon message to the court about the difficulties of getting health insurance under our current "system" can be found at http://www.kaiserhealthnews.org/Cartoons/2012/June/Open-Letter-To-Supreme-Court-Cartoon.aspx.



As always, please feel free to contact us with any questions. 


Brooke Lehmann, MSW, Esq.

Janis Guerney, Esq.


NOTE:  Past issues of the Washington update can be found on the Family Voices home page by scrolling down in the "News Feed" section.


Cosponsors of House F2F funding bill, H.R. 4083, sponsored by Rep. Frank Pallone (D-NJ):

Rep Langevin, James R. [RI-2] - 2/17/2012
Rep Norton, Eleanor Holmes [DC] - 2/17/2012
Rep Pingree, Chellie [ME-1] - 2/17/2012
Rep Cicilline, David N. [RI-1] - 2/17/2012
Rep Michaud, Michael H. [ME-2] - 2/17/2012
Rep Engel, Eliot L. [NY-17] - 2/17/2012
Rep Green, Gene [TX-29] - 3/5/2012
Rep Rangel, Charles B. [NY-15] - 3/8/2012
Rep Roybal-Allard, Lucille [CA-34] - 3/20/2012
Rep Carson, Andre [IN-7] - 4/26/2012


Cosponsors of Senate F2F funding bill, S. 2123, sponsored by Senator Robert Menendez:

Sen Bingaman, Jeff [NM] - 2/17/2012
Sen Conrad, Kent [ND] - 2/17/2012
Sen Snowe, Olympia J. [ME] - 2/17/2012
Sen Whitehouse, Sheldon [RI] - 2/17/2012
Sen Lautenberg, Frank R. [NJ] - 2/17/2012
Sen Kerry, John F. [MA] - 3/13/2012
Sen Klobuchar, Amy [MN] - 5/8/2012


Contacting your Members of Congress about F2F funding bills


All of you who are concerned about the future of F2Fs should contact your Members of Congress to urge that they cosponsor the Menendez or Pallone bill. You can call them through the Capitol switchboard at 202-224-3121.  (To find the names of your Members of Congress, go to http://www.congressmerge.com/onlinedb/index.htm.)  When you speak to the receptionist, state that you are a constituent and ask to speak to the staff person who handles health issues.  If that person is not available to talk, you can leave a BRIEF message identifying yourself as a constituent who has a child with special health care needs (if applicable) and asking that the Representative/Senator cosponsor a bill that would extend funding for Family-to-Family Health Information Centers.  Refer to the appropriate bill number and sponsor - in the Senate, S. 2123, sponsored by Senator Menendez; in the House, H.R. 4083, sponsored by Rep. Pallone.  Leave your home phone number and email address.


You can also write to your Representative (even if you call) via the "Advocacy" section of the Family Voices website, where you will find a pre-written letter that you fill in with your personal information.  (You do not need to know the name of your Representative.)  Please ask families you have worked with, friends, and relatives to write their Representatives through the Family Voices website also.  The URL is http://www.familyvoices.org/action/advocate.   At this time, the website is not configured to automatically send the letter to Senators, but simple instructions about how to contact your Senators, and text to copy and paste, can also be found on that page.  (You do not need to know the names of your Senators.)


Remember:  Federal resources may not be used for lobbying activities.


Please feel free to call Brooke or Janis (contact information above) if you have any questions.