August 07, 2014

August 6 Washington DC Update

August 6 Washington DC Update

Washington DC Update 8/6/14 

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

[Please note:  There is a webinar today, Wednesday, August 6, beginning at 3:00 pm ET. See below.]

Greetings from Washington! Summer in DC has officially begun with the departure of Congress for its August work period (aka, recess). In the final days of its session, Congress passed the Autism CARES Act, among other last-minute pieces of legislation. There has also been some additional judicial activity related the Affordable Care Act, and the issuance of a report comparing CHIP benefits to those for kids in Qualified Health Plans. According to the “inside-the-beltway” publication The Hill, there are five things to know as Congress takes a five-week summer recess (all politics-related). A sixth: the Washington DC Update will be taking a break until after Congress returns the week of September 8.


Sickle Cell Disease: Myths and Realities

Wednesday, August 6, 3:00-4:00 pm ET

This webinar will address the physical, psychological, and social aspects of Sickle Cell Disease as well as treatments and outcomes, and how to advocate as a caregiver, a patient with sickle cell disease, or as a provider, so that emergency department visits are more “              successful.” After registering you will receive a confirmation email containing information about joining the Webinar. Space is limited. Reserve your Webinar seat now at

Got Coverage? Next Steps in Using Your Health Insurance

Tuesday, August 12, 3:00 pm ET.

This webinar is aimed at consumers who want to learn more about when and how to enroll in the Health Insurance Marketplace, Medicaid or the Children’s Health Insurance Program (CHIP), and/or how to use their health insurance. It will also cover how to read an insurance card, how to find a doctor, what someone needs to know in making an appointment, and what to do in case of a health emergency. Key health insurance terms and recommended health screenings will be discussed. The Coverage to Care materials on health insurance literacy will be highlighted. Please send questions to prior to August 11 at Noon ET.

To Join By Phone Only: Dial (914) 339-0033; Use Access Code: 699-549-713; Enter the # key for the Pin Number. Or, click here to register.

Outreach to Individuals with Low Literacy Skills 

Wednesday, August 13, 3:00-4:00 pm ET 

This webinar, sponsored by the US Department of Health and Human Services “Connecting Kids to Coverage National Campaign,” highlights tips for conducting outreach and enrollment assistance to individuals with low literacy skills, drawn from research and practical experience.

Registration prior to the event is required. Please note: this webinar will not be recorded. Once you register, you will receive a confirmation email from which will include log-in information. Email with any questions or comments about the webinar. (See the “ACA Resources” section below, for more information about the Campaign.) Register here.

The Road to Evidence-Based Decision Making: Steps for Using Research to Inform State Policy

Thursday, August 14, 2:00-3:30 pm ET

The National Academy for State Health Policy will be hosting this webinar to introduce a new tool for state policymakers: A Roadmap for State Policymakers to Use Comparative Effectiveness and Patient-Centered Outcomes Research to Inform Decision Making (out August 5, 2014). With support from the Patient-Centered Outcomes Research Institute (PCORI), NASHP created this guide to assist states in making evidence-based policy decisions. This webinar will provide an overview of the Roadmap and discuss how policymakers (and advocates) can—and are—using research to inform their work. Register here.

Bridging Service Gaps: System Integration Strategies for Service Providers Working with Young Adults with Mental Health Issues

Tuesday, August 26, 1:00–2:00 pm ET
This webinar, sponsored by Pathways to Positive Futures, addresses strategies for meeting the cross-system needs of young people with mental health conditions in the transition years. It will address the challenges resulting from service fragmentation and varied eligibility criteria, and present innovative, collaborative, and service integration strategies developed by staff at the Early Assessment and Support Alliance, a statewide initiative in Oregon. The webinar will also feature a young adult perspective on involvement in services and will conclude with recommendations for bridging service gaps.  Register here.


Autism CARES Act Passed Congress; Now Moves to President’s Desk

Late on July 31, the Senate unanimously passed “Autism Collaboration, Accountability, Research, Education, and Support Act of 2014” or the “Autism CARES Act sponsored by Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) (S. 2449). The House had passed a companion bill (H.R. 4631), sponsored by Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA), on June 25, which is actually the bill that was approved by the Senate. The bill had been held up by several Senators who had questions or concerns, but these concerns were worked out without any amendments that would have required the House to take further action. President Obama is expected to sign the legislation soon. Among other things, the law will reauthorize the Combating Autism Act of 2011 for five more years, change the title of the law, increase representation of self-advocates and family members on the Interagency Autism Coordinating Committee (IACC), require a report on the needs of transitioning youth, and create a designated Autism Spectrum Disorder position in the Department of Health and Human Services to oversee the law’s implementation. See this House committee report for more detailed information.

House Committee Approves the “Achieving a Better Life Experience” (ABLE) Act

[from reports by AUDC and The Arc]

The House Ways and Means Committee approved, by voice vote, an amended version of the Achieving a Better Life Experience (ABLE) Act on July 31, and lead sponsors are hopeful that the legislation can be passed by the full House in the fall. The committee-passed Amendment in the Nature of a Substitute, offered in by Chairman Dave Camp (R-MI), would create tax-favored savings accounts for people with disabilities that would not count toward the $2,000 individual asset limits that apply to the Supplemental Security Income (SSI) and Medicaid programs. To address cost concerns, the scope of the bill was significantly narrowed from the legislation that was introduced in 2013. Among the changes are a cap on contributions at $14,000 a year; requiring that individuals open accounts in their home state or with a state which contracts with their home state; limiting individuals to only one ABLE account; and limiting the availability of ABLE accounts to people who acquire the disability before age 26. The Joint Committee on Taxation (JCT) estimated the new bill to cost about $2 billion over 10 years and a new estimate by the Congressional Budget Office is expected soon. During the mark-up, Chairman Camp and Ranking Member Levin (D-MI) discussed their commitment to work over the August recess to find “pay-fors” acceptable to both sides in order to allow the bill to move quickly following Labor Day. For more information please see the materials provided by the JCT.


The (State) Children’s Health Insurance Program (CHIP) was created in 1997 and reauthorized in 2009 through FY 2015. The ACA extended authorization for the program through FY 2019, but did not provide funding beyond FY 2015. In June, Senator Jay Rockefeller (D-WV) introduced a bill (S. 2461) to fund the program for an additional four years. Last week, Representatives Henry Waxman (D-CA) and Frank Pallone, Jr. (D-NJ) introduced similar legislation in the House of Representatives, the CHIP Extension and Improvement Act of 2014.

Also last week, Senate Finance Committee Chairman Ron Wyden (D-OR) and Ranking Member Orrin Hatch (R-UT) along with House Energy and Commerce Chairman Fred Upton (R-MI) and Ranking Member Henry Waxman (D-CA) sent a letter to all the nation’s governors posing six questions about each state’s CHIP program and input on whether the federal CHIP program should be extended and how it might be improved.

In other CHIP-related news, the National Alliance for the Advancement of Adolescent Health issued an 8-page fact sheet last week comparing the benefits and cost-sharing requirements in separate CHIP plans and child-only qualified health plans sold in the insurance exchange in Colorado, Georgia, Oregon, Texas, and West Virginia. According to the Alliance, qualified health plans are not comparable to CHIP plans in these five states, despite the availability of premium credits, cost-sharing subsidies, and benefit requirements under the ACA.

Health Equity Bill Introduced

Last week, members of the Congressional Hispanic Caucus (CHC), Congressional Asian Pacific American Caucus (CAPAC), and Congressional Black Caucus (CBC) introduced the Health Equity and Accountability Act (HEAA) of 2014 (H.R. 5294). Representative Lucille Roybal-Allard (D-CA), the bill's lead sponsor and the Chair of the CHC Health Task Force, was joined by 64 original co-sponsors. The HEAA focuses on addressing health disparities, building on the ACA by providing federal resources, policies, and infrastructure to eliminate health disparities in all populations, regardless of race, ethnicity, immigration status, age, ability, sex, sexual orientation, gender identity, or English proficiency. The bill includes people with disabilities as a population experiencing health disparities.

Worth Repeating:  Senate Committee Seeks Public Feedback on Disability and Poverty

The Senate Health, Education, Labor, and Pensions (HELP) Committee, is conducting a questionnaire on the topic of disability and poverty, a topic of major interest to Chairman Tom Harkin (D-IA). The committee would like to hear directly from people with disabilities living throughout the U.S. to learn more about their perspectives on this issue. Chairman Harkin plans to publish a report on the issue and to possibly hold a hearing before he retires in January. Members of the public can fill out the committee questionnaire at

ACA NEWS AND INFORMATION [See below for ACA resources.]

Administration Asks Subsidy Recipients for Additional Information and Documentation

According to this article in the Miami Herald, the US Department of Health and Human Services (HHS) is contacting hundreds of thousands of U.S. residents who received subsidies to help them purchase health coverage through the ACA’s health insurance exchanges.  They are being asked for information to verify their eligibility for subsidies, particularly their income and citizenship status.  As described in the article, the process does not always go smoothly, and failure to verify information can end up being very costly. (See “Information to Provide Enrollment Assistance,” under “ACA Resources,” below, for resources to help consumers in this situation.)

Study Finds Wide Variation in ACA “Silver” Plans

According to this study, published last week by the Robert Wood Johnson Foundation, “silver” plans under the ACA show great variation in the way that they achieve the same actuarial value (AV) of 70 percent, the AV for that “metal” level of health plan.  Breakaway Policy Strategies examined the 1,208 silver plans in all 50 states and D.C. and found that cost-sharing for silver plans varies greatly.  Key findings:

  • Coinsurance ranges from 0 percent to 50 percent for primary care physician (PCP) visits, and from 8 to 100 percent for specialist visits.
  • Copayments range from $0 to $75 for PCP visits and $10 to $150 for specialist visits.
  • 68 percent of plans charge a copayment before the deductible for a PCP visit.
  • 32 percent of plans subject PCP visits to a deductible and 39 percent subject specialist visits to a deductible.

HHS awards $54.6 million in Mental Health Services Funding

Last week, HHS announced that it would award $54.6 million in ACA funding to support 221 health centers in 47 states and Puerto Rico to establish or expand capacity to provide behavioral health services. The funds will be used for efforts such as hiring new mental health professionals, adding mental health and substance use disorder health services, and employing integrated models of primary care. The grants are expected to make services available for over 450,000 people nationwide.

Update on ACA Legal Challenges

As reported in the last update, two federal Circuit Courts of Appeal came to different conclusions in judging whether subsidies to purchase health insurance are available to individuals in states that did not establish their own exchanges. As expected, the administration requested an en banc review of one of the cases, Halbig v. Burwell. The court is expected to grant this request, meaning that all 13 judges of the Court of Appeals for the District of Columbia Circuit would hear the case and have a chance to change the original holding of the three-judge panel, which ruled that that the ACA bars premium subsidies to individuals in states not running their own exchanges.  In the other case, King v. Burwell, the plaintiffs have appealed the case to the Supreme Court.  It is unclear whether the Supreme Court will take the case. 

Meanwhile, federal courts have been considering another aspect of the ACA – whether the law is unconstitutional because it is a revenue measure that originated in the Senate, rather than the House of Representatives, as required by “origination clause” of the Constitution.  Once again, two courts have reached opposite conclusions.  See this article from SCOTUSblog for more details.


SSA Field Office Changes Affect SSN Printouts as of August 1; Benefit Verification Letters Remain Available

[From The Arc’s “Capitol Insider”] 

On August 1, the Social Security Administration (SSA) began to move forward with its plan to eliminate the issuance of Social Security number (SSN) printouts in its field offices. Individuals requesting a SSN printout will be directed to apply for a replacement SSN card, a process which takes about 2 weeks. However, SSA has indicated that it will ensure service to those with a dire need and that each field office will designate a point of contact to assist local organizations with obtaining SSN verifications, with consent, in emergency situations and in cases of hardship.  

Earlier this year, SSA announced plans to eliminate the provision of both SSN printouts and benefit verification letters at its field offices. These documents are often used by people with disabilities and others who need to promptly verify their SSN to secure a job or get a drivers’ license or non-drivers’ ID, or who need to verify their Social Security, SSDI or SSI benefits in order to secure housing, a loan, or public benefits (and for many other purposes). 

As explained in this press release, however, local Social Security offices will now continue to provide benefit verification letters until further notice.

CDC Seeking Stories on Emergency Management and People with Disabilities

[From The Arc’s “Capitol Insider.”] 

The Centers for Disease Control (CDC) aims to build public awareness and improve education about the unique needs of children with special health conditions and adults with disability during disasters.  Personal stories are being sought to help CDC improve its emergency preparedness and response efforts for adults with disability and families who have children with special health care needs.  Learn more and see the story collection form at:

WORTH REPEATING:  Social Security Administration’s New Disability Coalition Seeks Comments –  Deadline: August 15

From the Social Security Administration:

We are very excited to inform you that Social Security has established a National Disability Coalition. The National Disability Coalition provides an opportunity for all interested stakeholders to share their unique insights on topics of particular interest to Social Security early in the process and directly with policy makers. Further, it provides an opportunity for stakeholders to hear from one another.

As a first step in the National Disability Coalition, we are inviting you to participate in an online comment forum on the Disability Decision Process.  The online forum is now open for public ideas and comments via IdeaScale through August 15, 2014. To participate in the online forum and submit your ideas and comments, you must register at the site. Please share this information with others in your organization and networks.


Information to Provide Enrollment Assistance:

  • A recent CMS webinar offers tips and best practices for helping a consumer through the process of resolving an inconsistency in his or her application, along with links to resources with more information.
  • A new brief from the Center for Budget and Policy Priorities provides a quick overview of the issue and tips for what assisters can do to help consumers respond to requests from the marketplace. 
  • In the Loop released a shareable fact sheet with a collection of tips for assisters to help consumers navigate the process.

From Coverage to Care Health Literacy Tool

From Coverage to Care: A Roadmap to Better Care and a Healthier You is a tool to educate newly insured individuals about how to read their health insurance card, how to find a doctor, what they need to know in making an appointment and what to do in case of a health emergency. A glossary of key terms is provided as well as a personal health checklist. Read more about the From Coverage to Care Initiative.


FMLA Turns 21:  New Guide English and Spanish

The Family and Medical Leave Act (FMLA) took effect 21 years ago on August 5. To mark the occasion, the National Partnership for Women and Families released the seventh edition of its guide to the law, which answers frequently asked questions and is available in both English and Spanish.

Healthy Transitions Initiative (HTI) Toolkit

[From Children’s Mental Health Network Friday Update]

This toolkit was recently added to the website of Pathways to Positive Futures, an organization dedicated to improving the lives of youth and young adults with serious mental health conditions. The Toolkit displays documents developed and/or used by Healthy Transition Initiative jurisdictions at both the state and community level, and serves as a starting place for those states and communities beginning to plan for ways of better meeting the needs of young adults with mental health challenges. 

Healthy Transition Initiative Policy Briefs

The Healthy Transition Initiative was funded by SAMHSA to support seven states in implementing evidence-based models of service delivery for young adults with serious mental health challenges. These two policy briefs, funded by Georgetown University's National Technical Assistance Center for Children's Mental Health, outline the resulting changes at the practice/organizational level and the policy/systems change level.
HTI Issue Brief 1
HTI Issue Brief 2  

Community Engagement Toolkit and Webinars

The Meaningful Consumer Engagement Webinar Series, hosted by the Centers for Medicare & Medicaid Services (CMS) in collaboration with The Lewin Group and Community Catalyst, is based on The Meaningful Consumer Engagement toolkit, developed by Community Catalyst.   Although the webinars have all taken place, they are available online at The three webinars were on:  Meaningful Consumer Engagement: Consumer Advisory Committees; Meaningful Consumer Engagement: Member Meetings; and Meaningful Consumer Engagement: Training the Consumer

And don’t forget…August is National Children’s Eye Health and Safety Month

The NCFPP, working with the National Center for Children’s Vision and Eye Health, has put together resources to raise awareness of issues related to children’s vision and the importance of screening. Please help spread the word. Visit the media toolkit to find:

  • Sample articles and a family story to include in your newsletters
  • Materials specifically for CYSHCN to share with families
  • Sample Facebook postings and tweets
  • Posters to print to share at community events and/or clinics
  • Web buttons / graphics to post on your website

Please visit to share these resources in your communities.


As noted above, this will be the last issue of the Washington DC Update until after Congress reconvenes during the second week of September.  In the meantime, we will keep you posted about time-sensitive announcements of webinars and important news.

Happy August!!!