January 29, 2014

January 28 Washington DC UPdate

Washington DC Update 1/28/14 

{Don’t forget to check out the Family Voices/NCFPP ACA webpage!} 

Greetings from Washington!   The President will deliver his State of the Union address tonight (January 28, 2014), and the Republican response will be delivered by Cathy McMorris Rodgers, the highest-ranking female in the leadership of the House of Representatives, who also happens to be the mother of a 6-year-old boy with Down syndrome (and the first person to give birth three times while serving in Congress!). Read more about her here, and other news and information about the ACA and other topics below.

UPCOMING WEBINARS AND CALLS (You can spend all day Thursday on the phone or in a webinar!)

Former Foster Youth Eligibility for Medicaid  On Thursday, January 30, at 12:30 ET, the Georgetown Center on Children and Families will hold a State Partner Call on the ACA’s provision extending Medicaid to former foster youth up to age 26. The federal rules on this provision, proposed on January 22, 2013, have not yet been finalized, but the Centers for Medicare and Medicaid Services (CMS) released FAQs on the provision just before the end of the year. On the call, CMS staff will review the provision, proposed rule and FAQS, and answer your questions. Call-in: (866) 256-3815.

New Rule on Medicaid Home and Community-Based Services   On Thursday, January 30, from 1:00 - 3:00 ET CMS will be holding a public webinar explaining the new final rule regulating the permissible settings and other aspects of home and community-based services under Medicaid waivers and state options. This webinar is a repeat of the one held last week. For more information on the rule, click here. To join the webinar, click here.

National Disability Navigator Resource Collaborative (NDNRC)  On Thursday, January 30, from 2:00-3:00 ET, the United Spinal Association and the American Association on Health and Disability will present a webinar on the newly created NDNRC, a project of eight national disability organizations, funded by the Robert Wood Johnson Foundation, which has developed a website and published a Guide to Disability for Healthcare Insurance Marketplace Navigators. The webinar is for anyone concerned with making sure people with disabilities are properly enrolled in the most appropriate health insurance for their needs. Register for the webinar here.

White House Office Disability Community Call  On Thursday, January 30, at 3:00-3:45 ET, the White House Office of Public Engagement will re-launch its disability community conference call featuring a senior Administration official. Per the White House:  “The call is our way of keeping you informed about various disability policy issues, introduce you to Administration officials who work on these issues, and hear your input. These calls are open to everyone and we strongly urge you spread the words among your networks.”  This call is off the record and not for press purposes.

RSVP here. Once you register, a confirmation page will display dial-in numbers and a unique PIN. You will also receive an email confirmation with this information. Please dial in 5 minutes early. This call is accessible to deaf and hard of hearing participants via live captioning by logging in at the following link: http://www.fedrcc.us//Enter.aspx?EventID=2304373&CustomerID=321.


Both the House and Senate were in recess this past week. Although there is nothing new to report about funding for Family-to-Family Health Information Centers, a status report is below.

F2F Funding  As you probably know by now, we had two great developments at the end of the year in our efforts to get continued funding for F2Fs.

Short-term Funding in Budget Bill  A law reflecting the budget deal reached in December, the Bipartisan Budget Act of 2013, includes a temporary “doc fix” (through March 31) to avoid a cut in Medicare reimbursement to physicians and, along with that, several “health extenders.”  One of these extenders is for F2F funding. It provides $2.5 million in funding for F2Fs for the first six months of FY 2014. Thus, the F2Fs should have funding to last for at least another six months of the next grant cycle. HRSA must still figure out how to disseminate this funding.

Long-term Provision in “Doc Fix” Bill  On December 12, the Senate Finance Committee approved legislation to address the Medicare physician payment formula on a permanent basis. Included in the bill was a provision to extend F2F funding for five years at six million dollars per year, and to amend the law so that territories can be eligible for F2F grants. The bill (S. 1871) can now be considered by the full Senate.

In the House, two committees have approved other bills to address the physician payment problem, but neither one includes the F2F provision or any of the other “health extenders.” 

On January 9, 2014, the health subcommittee of the House Energy and Commerce Committee held a hearing on the future of these provisions, including the F2F program. Representative Pallone (D-NJ), sponsor of the House bill to extend F2F funding (H.R. 564), spoke highly of the F2F program in his opening remarks and expressed his support for the F2F provision in the bill approved by the Senate Finance Committee, which would extend funding for a longer period and at a higher level than Rep. Pallone’s own bill.

Dr. Michael Lu, director of the federal Maternal and Child Health Bureau, also praised the work of F2Fs in his testimony before the committee and in response to friendly questions from Rep. Pallone. The rest of the hearing was focused on Medicare, Medicaid and other provisions usually included in the extenders package.

What Next?  At some point, the full House, Senate, or both will vote on the physician payment bills reported out of their respective committees. Then both chambers will have to agree on a single version, most likely via a House-Senate conference committee. In all likelihood, the legislation will be passed by March 31, when the temporary physician payment fix expires.

F2F Funding Bills   At this point, the F2F provision in the Senate Finance Committee’s Medicare physician-payment bill – providing five years of additional funding at $6 million per year – is preferable to the three-year extension of $5 million in the Menendez and Pallone bills. Nevertheless, cosponsorship of one of these bills is a means of expressing support for the F2F program. The House bill (H.R. 423) now has six cosponsors in addition to Rep. Pallone. The Senate bill (S. 423) has five cosponsors in addition Senator Menendez.


Judge Blocked Missouri Law on ACA Navigators   A number of states have enacted or are considering laws to impose (often onerous) requirements on Navigators and other in-person assisters beyond those required by federal law and regulations. On January 23, a federal district court judge ruled that a Missouri law of this kind was pre-empted by the Affordable Care Act (ACA) and federal doctrine. The Court found that the Missouri statute, by both establishing additional licensing standards for ACA-authorized consumer-assistance and preventing the plaintiffs from assisting consumers as required by the ACA, conflicts with and is therefore preempted by the ACA. The lawsuit was one of the first brought against a state’s navigator laws. For more information see the media advisory of the National Health Law Program, and this blog post from the Georgetown Center on Children and Families. The judge’s opinion can be found here.

Updated Poverty Guidelines For 2014  On Monday, the U.S. Department of Health and Human Services released the updated poverty guidelines for 2014. According to this post in the Kaiser Health News blog – which includes a table of the new guidelines – these guidelines will not alter the current eligibility for and level of subsidies to buy insurance under the health law. However, the new guidelines will affect subsidies when people purchase insurance in the fall of this year for coverage in 2015. Each state will decide when the new guidelines take effect for purposes of Medicaid eligibility.

While the differences between the 2013 and 2014 poverty levels are small, it will mean that some more people on the higher end of the scale will be able to qualify for subsidies, while some people at the lower end will instead be directed to the Medicaid program in states that are expanding it. In the states that aren’t expanding Medicaid, people who fall just below the poverty level might end up with no coverage at all in 2015 (since there are no subsidies for individuals with incomes under 100 percent of the poverty level; see this brief from the Kaiser Family Foundation).

Confusion about Purchase of Private Insurance When Children are on Medicaid  Federal subsidies to purchase insurance on Exchanges are not available for individuals who already have “minimum essential coverage” (MEC). This includes children covered by the Children’s Health Insurance Program (CHIP), TRICARE (with full benefits), and most children covered under Medicaid – including those covered through TEFRA, a home and community-based (sec. 1915(c)) waiver, or the Family Opportunity Act. Federal policy has not yet been finalized about individuals on Medicaid through an 1115 waiver or a “medically needy” option (see below). For more information, see this article from the Catalyst Center or these FAQs from the IRS.

As described in this Star Tribune article, however, some families shopping for subsidized health insurance are told that their Medicaid-covered children cannot be covered under private plans purchased through an Exchange. While there has been confusion about this situation, federal policy is clear. Parents can purchase private insurance for those children, but they cannot receive subsidies for them. See this article from the Catalyst Center, or http://obamacarefacts.com/obamacare-subsidies.php.

IRS Policies on “Minimum Essential Coverage”  In a related matter, the IRS published a proposed rule on January 24 under which coverage through a Medicaid “medically needy” program or an 1115(a)(2) waiver (among other government programs that do not provide comprehensive benefits) would not be considered minimum essential coverage. If that policy is adopted in the final rule then, presumably, individuals who have Medicaid coverage through one of those pathways will be eligible to receive a federal subsidy for the purchase of private insurance on an Exchange. The IRS announced on the same day that individuals with Medicaid coverage through one of these pathways will not be subject to a fine under the ACA for not having insurance in 2014, since they may not know whether their coverage is considered “minimum essential coverage” for purposes of the requirement to have insurance.

Note that the proposed rule regarding “minimum essential coverage,” and the waiver of fines in 2014, apply only to individuals covered under some 1115 waivers – those issued under section 1115(a)(2) of the Social Security Act. The rationale is that these waivers do not confer the full set of Medicaid benefits. Rather, they allow a state to give some Medicaid benefits to a population not normally covered under Medicaid (expansion population), as opposed to those 1115 waivers that alter the way services are provided to individuals who are otherwise eligible for Medicaid. (See the proposed rule, page 10.)

[Repeat] Extension of federal Pre-Existing Condition Insurance Plan  The Obama administration has extended the Pre-Existing Condition Insurance Plan (PCIP) for an additional two months – through the end of March – to give enrollees more time to find a suitable insurance plan in the Exchange market. To retain coverage through March, PCIP enrollees must pay their February and March premiums, which will be at the same monthly rate as they paid for January 2014. To avoid a coverage gap when the PCIP program ends, enrollees must sign up (and pay premiums) for an Exchange plan by March 15. More information is available at www.pciplan.com. Note: If a PCIP enrollee lost coverage during the past 6 months because they moved out of state, they may be eligible to re-enroll in PCIP in their new state of residence. Information is available at 1-866-717-5826 (TTY: 1-866-561-1604), Monday – Friday, 8 a.m. to 11 p.m. EST.

[Repeat] Collection of ACA stories  The administration and advocacy groups are making a concerted effort to collect anecdotes about families who have been helped by the ACA. Family Voices is collecting stories, too – both positive stories and information about problems, so that we can inform policy makers. Please share your story, and encourage others to share theirs, at http://www.familyvoices.org/action/share. Please indicate in the first line that it is a story about the ACA.


Transformation of the MCH Block Grant  Since May of last year, the Maternal and Child Health Bureau has been working with the leadership of State Title V Maternal and Child Health programs and other stakeholders to develop and refine a plan (titled MCH 3.0) for transforming the Maternal and Child Health (MCH) Block Grant to better meet current and future challenges facing the nation’s mothers and children, including children with special health care needs. In this video, HRSA’s Associate Administrator for the Maternal and Child Health Bureau, Dr. Michael Lu, explains the proposal. It is also explained in these slides, and more information can be found on the AMCHP website. The proposal involves changing the data reporting requirements for grantees. The Bureau is asking for feedback on the proposed MCH 3.0, which can be sent to MCHTransformation@hrsa.gov. The plan will be finalized within the next couple weeks, so comments should be submitted as soon as possible.

FDA OKs Post-Natal Blood Test For Intellectual Disability  On January 17, the U.S. Food and Drug Administration authorized marketing of the Affymetrix CytoScan Dx Assay. According to the FDA press release, this test – based on a blood sample – can detect chromosomal variations that may be responsible for a child’s developmental delay or intellectual disability. The test analyzes the entire genome at one time to detect large and small chromosomal changes.

According to Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health in the FDA’s Center for Devices and Radiological Health, “This new tool may help in the identification of possible causes of a child’s developmental delay or intellectual disability, allowing health care providers and parents to intervene with appropriate care and support for the child.”

The FDA stated that the test results should only be used in conjunction with other clinical and diagnostic findings, consistent with professional standards of practice, and should not be used for stand-alone diagnostic purposes, pre-implantation or prenatal testing or screening, population screening, or for the detection of, or screening for acquired or genetic aberrations occurring after birth, such as cancer. Interpretation of test results should be performed only by health care professionals who are board certified in clinical cytogenetics or molecular genetics.

 Study on Health Care Transition and Employment  The Office of Disability Employment Policy (ODEP) released a new study on health care transition and employment entitled, Healthy Transitions: A Pathway to Employment for Youth with Chronic Health Conditions and Other Disabilities. The study focuses on the challenges and opportunities associated with implementing purposeful health care transition planning and its impact on employment for youth with chronic health conditions and other disabilities.



Outreach and Education Materials in English and Spanish  Families USA has the following materials available:

  • A checklist in English and Spanish that gives consumers the basic information they need to apply for coverage and tells them how to get started.
  • A brochure in English and in Spanish that defines basic insurance terms and outlines key factors to consider when selecting a health plan.
  • A brochure to help in conducting outreach to Latino consumers in English and Spanish,
  • A brochure that can help with outreach to African American consumers.

Worth repeating:

Family Voices/NCFPP Webpage on the ACA Family Voices and the National Center for Family/Professional Partnerships (NCFPP) have a frequently updated and searchable ACA resource page which can be found at http://www.fv-ncfpp.org/tools-and-resources/aca/. We welcome suggestions for resources to post on the webpage. Please send your ideas to arichey@familyvoices.org.

FV/NCFPP ACA Blog The most recent blog posting from NJ family leader Lauren Agoratus can be found on this page.

Enrollment Resources for Those Assisting People with Disabilities  The National Disability Navigator Resource Collaborative (NDNRC) recently released the “Guide to Disability for Healthcare Insurance Marketplace Navigators,” which is designed to inform Navigators and other enrollment specialists about the special considerations faced by people with disabilities as they shop for healthcare coverage. The NDNRC has also launched a website with news and resources to help provide enrollment assistance to consumers with disabilities.

Other Resources for Assisters  CMS provides a number of resources for those helping consumers to enroll for health insurance coverage at http://marketplace.cms.gov/help-us/2-partner-with-us.html.

Network Adequacy for Children In order to assist state advocates working to ensure network adequacy in health insurance plans, a group of federal child health organizations, including Family Voices, recently released an issue brief – Ensuring Adequate Marketplace Provider Networks: What’s Needed for Children. The brief explains why children need a robust provider network and how those networks can be developed and assessed over time. A First Focus blog post also discusses this issue.

Medicaid for Former Foster Youth  Under the ACA, former foster youth are eligible for Medicaid until they reach the age of 26. CMS recently issued a set of Frequently Asked Questions about this provision, among others. (The foster care section begins on page 3.)

Financial Assistance for Insurance According to a new national survey conducted by Enroll America and PerryUndem, a public opinion research firm, about seven in 10 (69 percent) uninsured adults are unaware that financial assistance to purchase health insurance is available to low- and moderate-income adults.  Families USA has developed a number of fact sheets and reference tables to help inform consumers about new financial assistance for health insurance:

Families USA also has a resource center for more fact sheets that can help in answering consumer questions and an “enrollment assisters network” that anyone can join. They also solicit feedback on help needed at assisters@familiesusa.org.

Follow HHS  ACA information is available from HHS via Facebook, Google + and Twitter. You can sign up here for Marketplace email and text message updates, or visit the Marketplace page for CMS partners to sign up for Marketplace email updates geared towards partners and to download CMS resources, training materials, or learn about partnership opportunities.


New Rule on Home and Community-Based Services Settings  As reported in the January 14 Washington Update, on January 10 the administration announced a new final rule regarding Medicaid home and community-based services (HCBS) provided through waivers and state plan options. On January 17, the National Association of States United for Aging and Disability (NASUAD) held a webinar on the final rule on the January 10 CMS (Centers for Medicare and Medicaid Services) final regulations. The slides from that webinar can be found here. Click here to access CMS's website about the final rule.

[Repeat] Transitioning Newborns from NICU to Home The Agency for Healthcare Research and Quality (AHRQ) has issued a new toolkit to provide resources for hospitals to improve safety when newborns transition to home from the neonatal intensive care unit (NICU). It includes a Health Coach Program, tools for coaches, and information for parents and families of newborns who have spent time in the NICU. The kit allows Health Coaches to create customized Family Information Packets.


In this new year, we are especially anxious to hear any suggestions you might have about how to make the Update more useful to you. Does it provide the right amount of information?  What parts are helpful and not so helpful?  Please let us know!

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

Yours truly,


Janis Guerney, Esq.



Brooke Lehmann, MSW, Esq.



Lynda Honberg


NOTEPast issues of the Update appears can be found on the home page of the Family Voices website  by scrolling down the "News Feed" items.