September 23, 2013

September 23 Washington DC Update

8 DAYS UNTIL OPEN ENROLLMENT BEGINS!!!  Right now, the Washington health care world is completely focused on the October 1 commencement of the six-month open enrollment period for insurance plans purchased through health insurance marketplaces (Exchanges).  You can find links to numerous ACA implementation resources on the Family Voices / National Center for Family/Professional Partnerships ACA webpage at  You can also go to [note that there is no “www” in the URL] for lots of information to help consumers.  Consumers should be directed to  Plan details and pricing will be available on that website on October 1, although some state Exchange websites include that information already.  On the blog, consumers can find information about how the Marketplace works and how a family can prepare to enroll.


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 Marketplace (Exchanges).  On Wednesday, 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, highlighting who is eligible and how the Marketplace will work.  Register at

The ACA and Immigrant Families.  On Thursday, September 26, 1:00 - 2:00 PM ET, the Georgetown Center for Children and Families and the National Immigration Law Center will hold a webinar about changes in health reform law and regulations that affect the eligibility of immigrants and the access barriers they face, particularly when part of mixed-status families.  The session will also look at which rules have not changed, showing a snapshot of the landscape of coverage options for immigrant families as of 2013.  Register at

Plan Selection and Enrollment.  On Wednesday, October 2nd at 2 pm ET, {tentative date} the Center on Budget and Policy Priorities (CBPP) will conduct a webinar focused on the plan selection and enrollment process for consumers.  A registration link will be available soon, so watch your in-boxes. 


On Capitol Hill, Republicans are still trying to undo “Obamacare.”  A provision to de-fund the health care law (which would also result in a 70% cut in CHIP funding) was included in legislation passed on Friday by the House, for the most part on a party-line vote.  That bill, known as the short-term continuing resolution (CR) would fund the government for the first two weeks of the FY 2014 fiscal year (from October 1 until December 15).  See

When the House bill goes to the Senate, that body will strip the provision de-funding the Affordable Care Act (ACA), and possibly make other changes, and then send the bill back to the House.  It is unclear what will happen at that point.  There could be a stand-off, in which case the government will have to shut down on October 1 until an agreement is reached.  See

Looming in the future, and intertwined with these other issues, is the point at which “debt limit” is reached, i.e., when the Treasury Department essentially runs out of funds to pay the nation’s bills unless the Congress increases the limit.  That point is estimated to come in mid-October.  See

In sum, there are several big issues to be negotiated among the two chambers of Congress and the President in the coming weeks – the short-term CR, the debt-limit extension, and the spending levels for the remainder of FY 2014, which will be determined by any changes made to the sequester law.  See Neither the Senate nor the President would agree to de-funding or repealing the ACA, but it is unclear when the Republicans will stop trying to do so.  See

F2F Funding.  There is a new cosponsor on the Senate bill – Senator Christopher Coons (D-DE)!  As you know, Senator Robert Menendez (D-NJ) and Representative Frank Pallone (D-NJ) have introduced bills (S. 423 and H.R. 564) to extend funding for Family-to-Family Health Information Centers (F2Fs) 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 of these bills, particularly the Senate bill.  In addition to Senator Coons, the Senate bill currently is cosponsored by 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  

Mental Health.   In a letter dated August 1, the leadership of the Senate Finance Committee -- Committee Chair Max Baucus (D-MT) and Ranking Member Orrin Hatch (R-UT) – asked the mental health community to offer comments on ways to improve the nation’s mental health care system.  Since the Finance Committee has jurisdiction over Medicare and Medicaid, they seek responses on the following questions:  What administrative and legislative barriers prevent Medicare and Medicaid recipients from obtaining the mental and behavioral health care they need?  What are the key policies that have led to improved outcomes for beneficiaries in programs that have tried integrated care models?  How can Medicare and Medicaid be cost-effectively reformed to improve access to and quality of care for people with mental and behavioral health needs?  Family Voices will be submitting comments, and we hope that readers of the update who are involved in the mental health care system will consider doing so as well.  Comments should be submitted by September 30  to

Meanwhile, in the wake of the Navy Yard shootings, Representative Tim Murphy (R-PA), a psychologist, spoke on the House Floor about his intention to introduce legislation to improve the mental health system.  Among other things, he noted that privacy laws hinder communication between parents and educational institutions and mental health providers, saying, “We need to clarify these boundaries.”  A subcommittee chaired by Rep. Murphy has been examining mental health policies for many months. 

The Senate Committee on Health, Education, Labor and Pensions (HELP), reported out mental health legislation in April, but it has not yet been taken up by the full Senate.  There are also several other Senate bills intended to improve the mental health care system.  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.

The ACA’s “Basic Health Program." The ACA allows states to offer a new coverage option, the Basic Health Program (BHP), for individuals who are citizens or lawfully present non-citizens, who do not qualify for Medicaid, the Children’s Health Insurance Program (CHIP) or other minimum essential coverage, and have income between 133 percent and 200 percent of the federal poverty level.  On September 20, the Centers for Medicare and Medicaid Services (CMS) issued a proposed rule which would establish BHP certification, eligibility, enrollment and cost-sharing systems similar to those for the insurance exchanges, Medicaid and the Children's Health Insurance Program.  Although the BHP was supposed to launch in 2014, it will be delayed until 2015.  Comments on the proposed rule are due on November 25, 2013.  More information can be found at

Scrutiny of Navigator grantees.  In last week’s update we reported on various ways that congressional Republicans, state legislatures, and state attorneys-general were attempting to limit the work of ACA “Navigators,” citing concerns about privacy of personal health and identity information.  This week, the administration took steps to address some of these concerns, noting that navigators will not be collecting personal medical information, because it will have no bearing on whether someone can get coverage or how much they will pay as of January 1.  In addition, the administration announced that people will be able to report suspected identity fraud or scams through the Marketplace’s call center and website.  The federal government is also establishing a “rapid response” system to deal with any security breaches and developing tip sheets to advise consumers about how to protect themselves.  Tips on preventing and reporting fraud are available on the website at  The Children’s Mental Health Network has more succinct but helpful tips at

ACA outreach grants for rural areas.  On Friday, Health and Human Services (HHS) Secretary Kathleen Sebelius announced more than $2.5 million in grants to rural health organizations to educate and enroll uninsured individuals and families living in rural areas.  Each grantee -- universities, local and critical hospitals, and other rural non-profit or public organizations -- will receive $25,000 each from HHS’ Health Resources and Services Administration (HRSA) to help people in their communities understand the benefits available to them, eligibility requirements and options in their State Health Insurance Marketplaces.  For a list of HRSA awardees, see

The Department of Agriculture is also helping with the national outreach effort through the Cooperative Extension Service. Through funding provided by the Centers for Medicare & Medicaid Services, the USDA’s National Institute of Food and Agriculture is working with the University of Georgia to establish a network of educators to help consumers seeking insurance through state Exchanges.  The University of Georgia will use the $1.25 million inter-agency agreement to coordinate outreach activities in 12 states.  


Report of Long-Term Care Commission – recognizes importance of family caregiving and family-centered care. The American Taxpayer Relief Act repealed a part of the ACA that created a public long-term care insurance program known as the Community Living Assistance Services and Supports (CLASS) program, which had proved to be unworkable.  In its place, the law created a long-term care commission, consisting of 15 appointees -- nine from Democratic Congressional leadership and the White House, and six from Republican leadership.  The commission had six months to make recommendations, which were approved on September 12 by a vote of nine to six.  These recommendations address long-term care service delivery, workforce, and financing, and propose the creation of a successor national advisory committee on long-term services and supports (LTSS).  The commission did not, however, propose a specific way to finance LTSS, suggesting that the successor committee address that issue.  Five of the commissioners who voted “no” released alternate recommendations that suggest financing long-term care through a social insurance program.  

Notably, the recommendations on workforce mention “family-centered care,” and recognize the importance of family involvement in the needs assessment and care planning processes, and the provision of care.  They recommended that family caregivers be considered part of the care team and have access to patient records.  A summary of the recommendations can be found at

Compensation for Personal Care Attendants.   On September 17, the Department of Labor (DOL) announced a final rule regarding minimum wage and overtime protections for personal care workers.  The new rule updates the companionship-services exemption that had been interpreted to exclude in-home workers, such as home health aides, from wage and hour protections.  Under the new rule, the Fair Labor Standards Act's (FLSA’s) minimum wage and overtime protections will apply to about two million direct care workers providing home care assistance to elderly people and people with illnesses, injuries or disabilities, such as home health aides, personal care aides and certified nursing assistants.  It will also apply to all direct care workers employed by home care agencies and other third parties.

Individual workers employed only by the person receiving services or that person's family or household and who are engaged primarily in fellowship and protection (providing company, visiting or engaging in hobbies) and care incidental to such activities, will still be exempt from the FLSA's minimum wage and overtime protections.  The rule clarifies that direct care workers who perform medically-related services for which training is typically a prerequisite are not companionship workers and therefore are entitled to the minimum wage and overtime. 

The rule will be effective Jan. 1, 2015, to allow time for adjustment to the new requirements.  The DOL has created a new web portal with interactive web tools, fact sheets and other materials to help families, other employers and workers understand the new requirements. These, along with information about upcoming webinars on the rule, are available at  The DOL press release explaining the rule can be found at, and is available in Spanish, Tagalog, Haitian Creole, and Traditional and Simplified Chinese.

Some disability groups were not happy with the final rule, arguing that it could compromise home-based care, especially for people with disabilities who use Medicaid dollars to pay family members to assist them.  See  The American Association of People with Disabilities (AAPD), however, supports the rule, and issued a detailed statement on the reasons for its support, including its belief that “the new rule will increase the number of qualified workers who want jobs in home and community-based settings by drawing on the workforce that currently only works in institutional settings.”   The AAPD also stated that “… ending the exploitation of this workforce will improve the quality of the services delivered through Medicaid home and community-based services systems throughout the states by ensuring that these jobs are carried out by qualified and dedicated individuals who want to do the work.”  See


Family Voices/NCFPP Webpage on the ACA.  We would like to remind you that there is a new, improved, and frequently updated ACA webpage to serve as a repository for information and resources about the ACA.  This page resides 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

“Beyond the Basics…” The Center on Budget and Policy Priorities (CBPP) recently completed an excellent webinar series, “Beyond the Basics…” which covered in detail the ACA’s premium tax credits; cost-sharing reductions; employer responsibility; and how household size and income will be determined for Medicaid and premium tax credits.  It illustrated these concepts with examples of various types of households.  Slides and other materials for all the webinars are posted to  

Calculation of premium subsidies; Kaiser Family Foundation calculator.  Unfortunately, the calculation of premium tax credits and cost-sharing subsidies is rather complex.  The federal website will enable people to make calculations after October 1.  Until then, HHS is referring people to the Kaiser Family Foundation subsidy calculator at  The Foundation encourages other organizations to feature the calculator on their websites using the embed instructions.

Other helpful resources include:

State-specific brochures on the premium tax credit.  Consumers Union and the Robert Wood Johnson Foundation have produced printer-ready brochures, tested on consumers, to explain the premium tax credits available under the ACA.  The brochures are available for every state and DC, in both Spanish and English.  These and worksheets for consumer assistors and tax preparers are available at

 InfographicsThe Kaiser Family Foundation and the Journal of the American Medical Association have jointly produced a series of infographics to illustrate the operation of the ACA They can be found at The newest infographic illustrates several premium subsidy scenarios.

Best Practices in Outreach and Education.  On September 19, the Centers for Medicare & Medicaid Services (CMS) hosted a teleconference to highlight best practices from Arkansas, Connecticut, Kentucky, and Minnesota in reaching consumers about the Health Insurance Marketplace.  Officials from those states described effective strategies they have taken to help consumers learn about the new ways they have to get health insurance coverage.  (Reusable grocery/tote bags were a very effective way to attract people to information booths in Kentucky!)

Until Midnight on October 3, 2013, a recording of the teleconference is available by calling 1-855-859-2056.  The conference id number is 63901001.


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

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

Yours truly,




Janis Guerney, Esq.



Brooke Lehmann, MSW, Esq.