September 16, 2013

September 16 Washington DC Update

Washington Update Setptember 16, 2013

Special NoteOn MONDAY (9/16) at 1:40 PM ET, you can participate in a conference call with President Obama and Secretary Sebelius!   See below.

GREETINGS FROM WASHINGTON!   We hope you all had a good summer.   This week the House and Senate reconvened after their August recess.  The focus was on the situation in Syria, but there was also discussion about funding the government for federal FY 2014, which begins on October 1.  Since Congress has not yet taken up most of the 13 separate spending (appropriations) bills to fund executive-branch departments and agencies (and the judicial and legislative branches), there will be short-term “continuing resolution” (“CR”) to fund the government. 

At this moment, it is very unclear what the spending level or duration of such a CR might be.  House leadership (Republican) proposed a 2½ -month CR at current spending levels, but some House Republicans are pushing for lower levels while Democrats in the House and Senate generally want higher levels.  On top of that, some Republicans are pushing for defunding the ACA as part of the CR.  The CR applies only to the “discretionary” programs of government – such as IDEA and medical research – not programs funded on a “mandatory” basis, such Social Security, Medicare and Medicaid (and F2F grants).


Call with President Obama and Secretary Sebelius.  On Monday, September 16, at 1:40 pm ET, President Obama and HHS Secretary Sebelius will hold a conference call for community leaders (like you) helping to implement the Affordable Care Act (ACA).  They will discuss the October launch of the Health Insurance Marketplace.  Space is limited, so you should register at You can submit questions in advance when you register.  Dial in: 800-779-6561; Passcode: 6487713 (please dial in no later than 1:40pm ET).

“Beyond the Basics…” On Wednesday, September 18, at 2 pm ET, the Center on Budget and Policy Priorities will hold a webinar about the relationships among several ACA-related concepts covered in earlier webinars:  premium tax credits; cost-sharing reductions; employer responsibility; and how household size and income will be determined for Medicaid and premium tax credits.  The webinar will feature real-life scenarios to illustrate how health reform's new coverage options will work for individuals and families, and there will be time for questions.  Register at

CMS Teleconference about Outreach and Education: Best Practices for the Health Insurance Marketplace.  On September 19, 2013, at 1:00 - 2:00 pm ET, the Centers for Medicare & Medicaid Services (CMS) will hold a teleconference for states, navigators, partners and stakeholders to learn about best practices in reaching consumers from Arkansas, Connecticut, Kentucky, and Minnesota.  Registration is required.  For more information on the Health Insurance Marketplace, see HHS partner resource page.

The Advocacy ATLAS
: Empowering Individuals and Families as Advocates.  On Monday, September 23, 2013, 2:00-3:00 pm ET, there will be webinar to walk through the ALL NEW online Advocacy ATLAS, highlighting resources around advocacy skills and leadership, employment success, youth leadership, access to health care, and more.  Participants will learn how to navigate the ATLAS to locate valuable resources and personal stories from advocates on how the available resources could be used in different life scenarios.  The ATLAS was developed by the Genetic Alliance, in collaboration with Family Voices and Parent-to-Parent USA, and features over 200 existing tools and resources developed by parent advocacy groups, disease advocacy organizations, disability groups, and other partners.  Register at

Health Insurance Marketplaces (Exchanges).  On September 25, at 1:00-2:00 ET, CMS will conduct a webinar, Health Insurance Marketplace 101, which will include a basic introduction to the Marketplace (Exchanges), highlighting who is eligible and how the Marketplace will work.  Register at



The battle of the budget is discussed at the beginning of this update.  Other congressional items of interest: 

F2F Funding.  As you know, current law funds the Family-to-Family Health Information Center (F2F) program through FY 2013, which ends September 30, although money flows to the F2Fs until the end of May 2014.  Senator Robert Menendez (D-NJ) and Representative Frank Pallone (D-NJ) have introduced bills (S. 423 and H.R. 564) to extend funding at the current $5 million level through FY 2016.  The Family Voices policy team is working with key Members of Congress to secure an extension of F2F funding for at least another year via incorporation of the F2F-funding legislation into a larger bill that is certain to be enacted.   

At this point, it would be very helpful to get more cosponsors on the Menendez and Pallone bills.  Current cosponsors of the Senate bill are Senators Sheldon Whitehouse (D-RI), Al Franken (D-MN), Amy Klobuchar (D-MN), and Elizabeth Warren (D-MA).  The House bill is cosponsored by Representative David Cicilline (D-RI).  If you would like to contact your Representative and/or Senators to urge them to cosponsor one of these bills, you can find their contact information at  

De-funding and delaying the ACA.  On September 12, the House passed a bill to ban new subsidies to help people buy health insurance until the Obama administration enacts a new verification system to ensure benefits go only to those who are eligible.  Proponents cited concerns about the potential for consumers to fraudulently receive premium subsidies because they would not have to adequately verify their income.  The bill has no chance of passage in the Senate.  See  Meanwhile, some Republicans are pushing for de-funding the ACA completely.  If you would like to read more about the complicated political situation in the House see

Scrutiny of Navigator grantees.  Some of the Republican leaders and members of the of the House Energy and Commerce Committee sent a letter, dated August 29, to some of the organizations that received Navigator grants from the federal government.  The letter asked the organizations to answer six questions, provide extensive documentation related to their grants, and arrange to meet with committee staff by September 13.  The Ranking Democrat on the committee, Henry Waxman (D-CA), wrote a letter of objection to his committee colleagues, charging that “the impact of the Republican investigations is not to enlighten the Committee, but to intimidate and divert resources from the effort to implement the law.”  The HHS Assistant Secretary of Legislation also responded, and provided the committee with the answers and documentation requested in the letter to the grant recipients. 

In addition, twelve state attorneys-general wrote to HHS Secretary Kathleen Sebelius to express concern about how Navigators will protect consumer identification and health information.  At least one state attorney-general also wrote to a federal Navigator grantee in its state -- West Virginia Parent Information and Training (WVPTI) -- which is an F2F and Family Voices State Affiliate Organization.  The WVPTI subsequently decided to decline the grant.  Cincinnati Children's Hospital Medical Center has also returned its grant due to state laws restricting Navigators.  See


[Please see above for webinars and calls related to the ACA.]

{Time-sensitive} Comments sought on discrimination in health care delivery.  In advance of issuing proposed regulations, HHS has issued a request for information regarding Section 1557 of the Patient Protection and Affordable Care Act, which prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities.  The department is seeking information to better understand individuals' experiences with discrimination in health programs or activities.  Family Voices is working with other child-health and disability organizations to develop comments, but we encourage individuals to submit their own comments as well.  Comments are due on September 30.  For more information and to submit comments, see!documentDetail;D=HHS-OCR-2013-0007-0001.

Final regulations on “individual shared responsibility” – important issue for families of CYSHCN.  On August 27, the IRS issued a final rule that, among other things, determines what is considered “minimum essential coverage” (MEC) for purposes of determining whether someone complies with the individual mandate of the ACA.  People who have affordable minimum essential coverage will not qualify for subsidies to purchase health insurance.  Under the agency’s proposed rule, anyone with Medicaid coverage, even “wrap-around” coverage, would have been barred from receiving subsidies.  Family Voices and other advocates urged that the final rule exclude supplemental Medicaid coverage from the definition of MEC. 

The good news is that the agency has deferred a decision about whether Medicaid coverage under an 1115 waiver, the Katie Beckett option, or a “medically needy” program will be excluded from the definition of MEC, indicating that it will do so in a later rule.  Coverage through the Family Opportunity Act and some other Medicaid eligibility categories of importance to CYSHCN will be considered MEC, however.  This is a complicated issue, but a good explanation can be found on the website of the Georgetown Center on Children and Families at  A more detailed discussion can be found on the website of the George Washington University’s Health Reform GPS at

Certified Application Counselor (CAC) organizations and “Champions for Coverage.”    Organizations that wish to help consumers apply for coverage pursuant to the ACA, can be federally designated as CAC organizations.  There is no federal funding available for this role, but individual consumer assistors engaged by CAC organizations will receive about 5 hours of online training.  More information about CACs can be found at

The Centers for Medicare & Medicaid Services (CMS) has also invited organizations to become “Champions for Coverage,” which essentially is a way for an organization to become an official partner in publicizing the Health Insurance Marketplaces.  Suggestions about how to publicize the marketplaces, whether you apply to be a “Champion” or not, can be found at

Still confused about all the different types of assistors?  Click here.  

How the ACA helps diverse populations.  HHS and White House officials have posted blogs about how the ACA will help Asian Americans and Pacific Islanders, communities of color, and American Indians and Alaska Natives, and how it will help to expand mental health coverage. 


Family Voices/NCFPP Webpage on the ACA.  We would like to remind you that there is a new, improved, and frequentlyl updated ACA webpage to serve as a repository for information and resources about the ACA.  This page will reside on the website of the National Center for Family and Professional Partnerships (NCFPP) and will serve as a spot where families, family leaders, and others can go to information they need to understand the ACA's impact on children with special health care needs and their families, and to help others to understand it as well.  We welcome suggestions for resources to post on the webpage.  Please send your ideas to

Kaiser Health News has recently published these articles of interest:

Kids With Costly Medical Issues Get Help, But Not Enough” (Aug. 26)

Consumers With Serious Medical Problems Need To Carefully Assess Total Plan Costs” (Sept. 10).

The State Health Reform Assistance Network (State Network) is a Robert Wood Johnson Foundation-funded program intended to help states implement the ACA.  Nevertheless, it has some resources that might be of help to advocates, such as an educational slide deck providing detailed information on Advance Premium Tax Credits (APTCs) and Cost-Sharing Reductions (CSRs).  It is designed as a tool to educate navigators, certified application counselors, and other assistors who need to understand and explain how APTCs and CSRs work in practice. See

The current issue of Health Affairs includes an article that would be great to share with policy makers.  It is authored by the mother of a child born with severe health problems, and illustrates the value of Medicaid in general, the Katie Beckett option in particular, and the elimination of pre-existing condition exclusions.  It also provides a vivid description of how challenging it is – psychologically, financially and otherwise -- to have a child with special health care needs.  The article, “Against All Odds: How a Medicaid Waiver Brought Our Critically Ill Daughter Home,” can be found at

To see a first-hand account of a constituent’s attendance at a U.S. Senator’s town hall meeting, see "A good four minutes." Amy Peterson shows how advocacy works,” posted August 30, 2013, on the blog of the Children’s Mental Health Network, which, by the way, has an excellent website and Friday Update. 

Washington Update format.  Just a reminder, the Washington Update is now being sent via a subscription list.  Of course we hope you will not want to do so, but if you care to unsubscribe you can do so via the "SafeUnsubscribe" link at the very bottom of the page.  

Please note that the current issue of the Update appears on the home page of the Family Voices website.  Past issues of the Update can be found by scrolling down the "News Feed" items.  

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


Yours truly,




Janis Guerney, Esq.



Brooke Lehmann, MSW, Esq.