May 18, 2012

May 18 Washington Update

With great sorrow, we report that Katie Beckett passed away this morning.  Many of you know her name because the advocacy of her mother, Julie Beckett (a founder of Family Voices), led to the creation of the so-called "Katie Beckett waiver," which has enabled many children with complex medical needs be cared for at home instead of in a hospital or other institution.  Katie followed in her mother's footsteps and became an advocate for people with disabilities, instrumental in the development of the Kids As Self-Advocates (KASA) program of Family Voices.  If you would like to express your memories, condolences, or other messages to Katie's family and community, please visit


From Washington this week, there is some news to report from the Department of Health and Human Services.  But first, an update on the F2F funding legislation...

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

There were no new cosponsors this week, so the current tally is 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.)

Where will the bills go from here?  After the election in November, Congress will come back to Washington for a "lame duck" session, during which it is expected that they will pass time-sensitive legislation, such as the "doc fix" to maintain the level of Medicare reimbursement to physicians.  It is our hope that the F2F legislation can be attached to one of these "must-pass" bills.  The greater the show of support for the bills (i.e., the more cosponsors), the easier it will be to get the bill attached to a bigger piece of legislation.

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.

Establishment of State Exchanges under ACA

Under the Affordable Care Act (ACA), states are required to establish (or let the federal government establish on their behalf) "Exchanges" through which many individuals and small businesses can purchase health insurance.  These Exchanges are supposed to be operational by January 1, 2014.  

This week, HHS awarded grants to aid in the development of exchanges to Illinois, Nevada, Oregon, South Dakota, Tennessee and Washington.  Including these states, 34 states and the District of Columbia have received these Establishment grants to date.  Details of every state's progress in establishing an Exchange can be found at

Also this week, HHS issued two documents to guide states in building their Exchanges, and announced that the Department will conduct implementation forums in July and August to work with states and stakeholders on their questions and the work to be done in building Exchanges. The Department will also consult with Tribes, Tribal Governments, and Tribal Organizations on how Exchanges can serve their populations.  For more information on the guidance to states and the schedule of implementation forums, see

Other information about the development of Exchanges can be found in an article in Kaiser Health News at

We urge you to get involved in the Exchange development process in your state.  For suggestions on how to do so, see and

CMS Innovation Grants

This week the Centers for Medicare and Medicaid Services (CMS) announced that 26 applicants will receive Health Care Innovation grants to implement new ideas to deliver improved health care and lower costs to people enrolled in Medicare, Medicaid and the Children's Health Insurance Program (CHIP), particularly those with the highest health care needs.  Grantees include providers, payers, local government, public-private partnerships and multi-payer collaboratives.  A couple of the projects are aimed specifically at helping children and families:

Project Title: "New England asthma innovations collaborative"
Geographic Reach: Massachusetts, Rhode Island, Connecticut, Vermont

-  To lower costs of asthma care by delivering cost-effective prevention-oriented care in clinics and at home to reduce preventable pediatric-related emergency department visits and hospital admissions; to create a new type of workforce and service delivery model that targets cost-effective and culturally competent care, featuring patient self-management education, environmental interventions and long-term sustainability payment mechanisms of these services. Read More

Project Title: "CommunityRx system:  linking patients and community-based service"
Geographic Reach: Illinois

-  To develop the CommunityRx system, a continuously updated electronic database of community health resources that will be linked to the Electronic Health Records of local safety net providers, enabling referrals to community resources relevant to the patient's condition and status.   Read More

Project Title: "Partnering with parents, the medical home and community provider to improve transition services for high- risk preterm infants in Rhode Island"
Geographic Reach: Rhode Island

- To improve services for approximately 2400 mothers in Rhode Island who have pre-term babies, through hiring, training and deploying family care teams to offer education and support and monitor infants' growth and development, and support primary care providers who help provide care for this at-risk population.  Read More

A summary of all the grantees' projects can be seen at Project Profiles.  Background information about the grant program can be found at Archived Materials

Miscellaneous information:   FAIR Health is an independent not-for-profit corporation that offers unbiased information about health care insurance and charges.  Through, consumers can learn about the health care reimbursement system - through "Reimbursement 101," and can estimate their out-of-pocket medical and dental costs based on where they live.   

National Health Law Program newsletter now free.  Formerly available only as a quarterly, subscription-based print newsletter, the NHeLP's Health Advocate is now going to be a free monthly e-newsletter providing updates on federal laws, regulations and programs, court decisions in health care law affecting low-income people, state laws and health care programs, developments in Medicaid managed care law, and trends in preserving the health care safety net. To view the current edition of the Health Advocate (focused on the health Exchange regulations), click here. To subscribe to the Health Advocate, click here. To view past versions of the Health Advocate, click here

Free national parks pass for people with disabilities. This is not a new policy, but is worth sharing as summer approaches: people with permanent disabilities can get free access to national parks by obtaining an "Access Pass" at a federal recreation site or (for a $10 fee) through the mail.  Documentation to get the pass can be a physician's statement, or a document issued by a State or Federal agency like the Veteran's Administration, Social Security Disability Income, Supplemental Security Income, or a vocational rehabilitation agency.  

For more details, or to find a recreation site, visit the National Park Service's Web site: and

New Fact Sheet: Respite for Individuals with Autism.  ARCH/National Respite Network just released a fact sheet that provides a basic overview of useful information for respite providers who work with individuals and families affected by Autism Spectrum Disorders.  To download a pdf of this fact sheet, click here. To page through the document, comment, or share it, click here.


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  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.