September 21, 2012

September 21 Washington Update


Greetings from Washington!  Just last week we reported that Congress was back in session.  Now they are about to recess again until after the election.  Before they go, though, they must pass a "continuing resolution" ("CR") that will fund the government through March 27. 

The House passed the CR last week and the Senate is expected to do so late tonight so that it can be sent to the President.  The CR provides for a slight increase in FY 2013 spending over the amount appropriated in FY 2012, which will result in a 0.612 percent across-the-board increase for most discretionary (appropriated rather than "mandatory" spending) programs. The CR also includes a reauthorization of the TANF (Temporary Assistance for Needy Families) and SNAP (food stamp) programs.  "Mandatory" spending, such as funding for Social Security, Medicare, and Medicaid, occurs without the need for congressional action, so is not affected by the CR.

F2F funding bills (S. 2123 and H.R. 4083).  Good news!  The Senate bill gained two new cosponsors this week - Senator Ron Wyden (D-OR) and Senator Chuck Schumer (D-NY).  Both are members of the Senate Finance Committee, which is helpful since that committee has jurisdiction over F2F funding.  So now the Senate bill has 12 cosponsors in addition to Senator Menendez.  The House bill has a total of 12 cosponsors in addition to Representative Pallone.  Cosponsors of both bills are listed at the end of this update.

The policy team continues efforts to garner congressional support for the legislation by meeting with Hill staffers, particularly those of Senate Finance Committee members.  Thanks to those of you who have reached out to provide additional information to Hill staff.  This can make a big difference in their recommendations to their bosses about cosponsorship.

As we have said in the past, we are hoping that the F2F funding provision can be incorporated into a larger piece of legislation that is enacted during the lame duck session of Congress or early next year.  There is a distinct possibility that there will be a big budget deal in the coming months, which would provide the type of legislative "vehicle" we need. 

*** Thus, the coming weeks are a critical time to educate congressional staffers about the work of your F2F.  Please look out for additional communications from us about ways you can help to gain passage of legislation to extend F2F funding. ***

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.  Please forward this information to your family, friends, health care providers, and other families of CYSHCN 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 going to

NOTE:  Remember to undertake these activities in your personal capacity, not as an F2F, since federal resources may not be used for lobbying.

DOJ finds that Florida violates ADA by keeping children in nursing homes.  The U.S. Department of Justice issued a 22-page "letter of findings" to Florida's Attorney General, informing the state that it is out of compliance with the Americans with Disabilities Act (ADA), as interpreted by the Supreme Court in the Olmstead decision, because it is not serving children with disabilities in "the most integrated setting appropriate to their needs."  The letter states:

"Our review of the State's system reveals that the State fails to meet its obligations under Title II of the ADA and its implementing regulations, 28 C.F.R. Part 35, by unnecessarily institutionalizing hundreds of children with disabilities in nursing facilities.  Many children entering nursing facilities in the State are unnecessarily separated from their families and communities for years.  With adequate services and supports, these children could live at home with their families or in other more integrated community settings.  The State's policies and practices also place numerous other children who have medically complex or medically fragile conditions at risk of placement in nursing facilities and other institutional settings." 

The full letter is available at (under "What's New").

New Self-Advocacy Resource.  The University of Minnesota's Research and Training Center on Community Living has developed "Self-Advocacy Online" - -- a website being promoted by The Arc.  According to a press release, the website "is targeted to those who are just learning about their own rights and responsibilities as well as to those who participate in organized self-advocacy groups and activities. This site will provide a hub for individuals and groups to gain information that is meaningful to them and can be used by them to advocate for themselves and all people with I/DD, collaborate and share ideas, and boost computer literacy skills in the process. The site is under development and is continually adding new resources..."


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 Carson, Andre [IN-7] - 4/26/2012
Rep Cicilline, David N. [RI-1] - 2/17/2012
Rep Engel, Eliot L. [NY-17] - 2/17/2012
Rep Green, Gene [TX-29] - 3/5/2012
Rep Hanabusa, Colleen W. [HI-1] - 7/18/2012
Rep Langevin, James R. [RI-2] - 2/17/2012
Rep Michaud, Michael H. [ME-2] - 2/17/2012
Rep Norton, Eleanor Holmes [DC] - 2/17/2012
Rep Pingree, Chellie [ME-1] - 2/17/2012
Rep Rangel, Charles B. [NY-15] - 3/8/2012
Rep Roybal-Allard, Lucille [CA-34] - 3/20/2012
Rep Waxman, Henry A. [CA-30] - 7/9/2012

Cosponsors of Senate F2F funding bill, S. 2123, sponsored by Senator Robert Menendez:
Sen Akaka, Daniel K. [HI] - 6/4/2012
Sen Bingaman, Jeff [NM] - 2/17/2012
Sen Conrad, Kent [ND] - 2/17/2012
Sen Franken, Al [MN] - 6/5/2012
Sen Inouye, Daniel K. [HI] - 8/2/2012
Sen Kerry, John F. [MA] - 3/13/2012
Sen Klobuchar, Amy [MN] - 5/8/2012
Sen Lautenberg, Frank R. [NJ] - 2/17/2012
Sen Snowe, Olympia J. [ME] - 2/17/2012
Sen Whitehouse, Sheldon [RI] - 2/17/2012
Sen Wyden, Ron [OR] - 9/19/2012
[Senator Schumer has agreed to cosponsor but has not yet been officially added.]

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  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   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.