April 20 Washington Update
Greetings from Washington. This update will, once again, review the status of the F2F funding legislation and implementation of health care reform.
F2F funding bills
While we may sound like a broken record on this topic, we cannot emphasize enough how important it is to get cosponsors for the F2F funding legislation introduced in February by Senator Robert Menendez (D-NJ) and Representative Frank Pallone (D-NJ). Currently, the Senate bill (S. 2123) has six cosponsors (5 Democrats and 1 Republican) in addition to Senator Menendez, and the House bill (H.R. 4083) has nine cosponsors (all Democrats) in addition to Representative Pallone.
If your Senator(s) or Representative have/has cosponsored the legislation, please take a moment to thank them, either by phone or email. You can find their contact information by clicking on their names on the list of cosponsors at the end of this update.
If your Members of Congress have not yet cosponsored the legislation, please contact them to ask that they do so. See guidance at the end of this update or click here now to send a pre-drafted letter to your Representative. Attached to this update are some materials about the bill you can send to congressional staffers.
New agency - the Administration on Community Living
On April 16, Secretary of Health and Human Services Kathleen Sebelius announced the formation of a new agency within the department, the Administration on Community Living (ACL). The ACL consolidates the Administration on Aging, the Office on Disability and the Administration on Developmental Disabilities (ADD) into a single agency, although these entities will still exist within the new agency. (The ADD will now be called the Administration on Intellectual and Developmental Disabilities.) The Secretary said that the new agency will support both cross-cutting initiatives and efforts focused on the unique needs of individual groups, specifically citing "children with developmental disabilities." Advocates for both older Americans and people with disabilities seem to look positively on the change because it should elevate disability issues within the structure of HHS, and because it recognizes that issues related to services and community integration for people with disabilities are similar across the lifespan. See http://www.disabilityscoop.com/2012/04/17/new-agency-disability/15403/. The ACL Administrator is Kathy Greenlee, who will also continue to serve as the Assistant Secretary for Aging. Long-time disabilities advocate Henry Claypool is the ACL's Principal Deputy Administrator and will continue to serve as the Senior Advisor to the Secretary for Disability Policy. Sharon Lewis, who was head of the former ADD, is now the Commissioner of the Administration on Intellectual and Developmental Disabilities and reports directly to the Administrator for Community Living.
ACA implementation - state advocacy needed
An important part of the Affordable Care Act (ACA) was the establishment of an "Essential Health Benefits" (EHB) package specifying broad categories of benefits that must be covered by health plans selling insurance through the state Exchanges. To the disappointment of some advocates, the administration decided to let states determine the benefits to be required within these broad categories. States will choose an existing plan in their state as a "benchmark" as the basis for determining the EHB package. Therefore, advocates will have to work at the state level to ensure that a robust benchmark plan is selected.
To advise state advocates, the Center for Budget and Policy Priorities will be hosting a webinar on Essential Health Benefits on Wednesday, April 25th, from 1:00 to 2:30 pm. You can register at https://www3.gotomeeting.com/register/253158606.
Another excellent resource on EHB (attached) was developed by American Academy of Pediatrics Division of State Government Affairs. Among other things, it points out that it may be necessary to fight for inclusion of habilitation benefits on par with rehabilitation benefits, and for coverage of drugs and biologics used by children, particularly those with special health care needs. [Note: the AAP document refers to the "Dec. 16 CMS bulletin" and "CMS FAQs." These are the documents providing federal guidance on state determination of EHB packages.]
Also attached is a document on Exchange implementation produced by the AAP Pennsylvania Chapter to inform its state level advocacy efforts but which should be helpful to those in other states as well.
As always, please feel free to contact us with any questions.
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
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
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 phone number and email address. (Remember to use your personal contact information, not that of your F2F.)
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 you r 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.