May 30, 2014

May 29 Washington DC Update

May 29 Washington DC Update

Washington DC Update 5/29/14

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

Greetings from Washington!  It was great to have you here in Washington, DC (in the best of its spring weather!) for the Family Voices leadership meeting last week. We were so glad that you were able to personally tell your Members of Congress and their staffers about the importance of family-centered care, and the ways that you are helping families of children with special health care needs.

This update includes, among other things, information about a number of new webinars, newly announced rules on the Affordable Care Act (ACA), and recent action on autism legislation.


Special Enrollment Periods and Resources for the Uninsured  

Thursday, May 29, 1:00 pm ET

Presented by the Health and Human Services (HHS) Partnership Center. The health care law has created special enrollment periods for those who experience special circumstances such as graduating from college and losing health insurance, getting married and needing coverage for a spouse, losing employer insurance or turning 26 and losing coverage on a parent’s health plan. This webinar will discuss special enrollment periods and ways that those who do not qualify for a special enrollment period can enroll in the Health Insurance Marketplace. Register here, or to join by phone only, dial 1-646-307-1706, Access Code: 564-494-667; the PIN number is the # (pound) key.

Basics of Rate Setting for Family-Run Organizations within a Medicaid Environment

Thursday, May 29, 3:30-5:00 pm ET

Presented by the Family Run Executive Director Leadership Association (FREDLA) in partnership with the TA Network, The Human Services Collaborative, and The Institute of Innovation and Implementation at the University of Maryland School of Social Work, this webinar is intended to help family-run organizations understand rates and reimbursement in a fee-for-service environment:  how fee-for-service rates are set; what costs go into a rate; and other factors affecting reimbursement. Register here.

As a follow-up, Office Hours will take place on June 10, from 2:00 to 3:00 pm ET. Experts will be available and family-run organizations will be able to call in and ask questions about becoming Medicaid providers. 

Promising Practices and Technologies for Communicating with Persons with Access and Functional Needs during Emergencies

Wednesday, June 4, 1:00-2:30 pm ET

Sponsored by the U.S. Department of Homeland Security’s First Responders Group, Assistant Secretary for Preparedness and Response, and the Federal Emergency Management Agency (FEMA), this webinar will provide an overview of practices and technologies used for communicating with persons with access and functional needs during emergencies, and will review common challenges, practical solutions, and lists of resources. Registration is not required. Login: Log in as a guest. Participants can earn Continuing Education Units (CEUs) upon successful completion. For more information visit the "Grants and Training" section on

Improved Planning for Vulnerable Populations through Use of Closed PODs (Points of Dispensing)
Thursday, June 5, 2:30-4:00 pm ET

Sponsored by the National Association of City and County Health Officials (NACCHO), this webinar will explore how local health departments from St Paul-Ramsey County, MN, and Oakland County, MI, utilize closed Points of Dispensing (PODs) to improve emergency planning for vulnerable populations, including people with disabilities who may not be able to easily access public PODs. Participants will also have the opportunity to hear about new resources and tools being developed by NACCHO’s Health and Disability team, including:

  • A Health and Disability Toolkit
  • A guide to including people with disabilities in public health practice
  • A directory of community-based organizations that serve people with disabilities

NACCHO will also briefly present on findings from its current assessment of local health department activities that are inclusive of people with disabilities. Register here. 

FREE State-Based and In-Person Advocacy Skills Trainings – Long-Term Care

Applications will run from June 2 - June 23.

As part of its Consumers for Quality Care, No Matter Where Initiative, the National Consumer Voice for Quality Long-Term Care (Consumer Voice) will be offering FREE state-based, in-person advocacy trainings for groups to make an impact on policy and contribute to the Consumer Voice's national efforts. Participants will include long-term care ombudsman programs, consumer advocacy groups, family/caregiving groups, consumer alliances, and community and senior organizations.

The trainings will involve:

  • A pre-training conference call where participants will learn how to strategize around a particular issue. 
  • On-site half-day or full-day training with Consumer Voice staff.

A full-day training will cover all topics listed below; a half-day training will include two out of the four following topics: 

  • How to craft an effective advocacy message.
  • Delivering your message in person: the nuts and bolts of meeting with a key decision maker.
  • Delivering your message: utilizing both traditional approaches and social media.
  • How to grow, support, and activate your network.

More details about the application process and the trainings will follow soon. In the interim, organizations should acquire 20 individuals who want to receive these trainings. Priority will be given to applicants who will be joined by other advocates outside their organization or program. 

Click here to contact Sara Cirba, Advocacy and Development Associate, if you are interested in receiving Consumer Voice's advocacy skills training or have any questions; or call 202-332-2275 ext. 221.


House Approves Military Children with Developmental Disabilities Act

The Military Children with Developmental Disabilities Act (H.R. 4630), introduced by Representatives John Larson (D-CT) and Tom Rooney (R-FL) on May 9, passed the House of Representatives on May 21 as an amendment to the National Defense Authorization Act (NDAA). The bill would improve access to behavioral health services, including Applied Behavior Analysis (ABA), for TRICARE beneficiaries with developmental disabilities. A similar bill (S. 2333) was introduced in the Senate by Senators Patty Murray (D-WA), Kirsten Gillibrand (D-NY), Marco Rubio (R-FL), and Roy Blunt (R-MO) on May 14 and is expected to be included as an amendment to the NDAA bill when that bill is considered by the full Senate.

House Subcommittee Will Mark Up the Combating Autism Act

On May 28, the Health Subcommittee of the House Energy & Commerce Committee is scheduled to hold a markup of legislation (H.R. 4631) to reauthorize the Combating Autism Act for five more years. The bill, introduced by Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA), would extend the research, surveillance, public awareness, and professional training activities currently authorized by the Act, but would reform the Interagency Autism Coordinating Committee (IACC) to promote greater coordination among federal agencies and require the Government Accountability Office (GAO) to review the existing array of public and private services for people with Autism Spectrum Disorder, conduct a survey of stakeholders, and make recommendations to enhance coordination, efficiency, and value of services. To the disappointment of many advocates, the bill would not change the name of the law.

Children’s Hospice Bill Introduced

On May 8, Representatives Jim Moran (D-VA) and Renee Ellmers, RN (R-NC), introduced legislation (H.R. 4605) to improve health care for seriously ill children by making the Children’s Program of All-inclusive, Coordinated Care (ChiPACC) a state option under Medicaid. Currently, states must apply for a waiver to offer this benefit. Under the ChiPACC model of care, palliative care may be offered along with treatment from the time of diagnosis. Only five states have received a ChiPACC waiver - Florida, Colorado, California, New York, and North Dakota. Other states are in various stages of seeking waivers, but are waiting on federal legislation allowing them to elect the state plan option. Without the waiver, Medicaid will not cover palliative care while a child is still receiving curative treatment. The bill is supported by Children’s Hospice International.

Legislation Would Limit Use of Sheltered Workshops

As reported in this article in Disability Scoop, Senator Tom Harkin (D-IA, who was honored last week by Family Voices) and other lawmakers have negotiated a bipartisan deal on reauthorization of the Workforce Investment Act. Under the agreement, individuals with disabilities under age 24 who are leaving special education programs would, in most cases, be required to pursue competitive, integrated employment before being referred to a sheltered workshop, where workers often receive less than the federal minimum wage.

Meanwhile, the legislation would require that state vocational rehabilitation agencies work with schools to provide “pre-employment transition services” to all students with disabilities and would require these agencies to devote at least 15 percent of their federal funding to help young people transition from school to work.

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

Special Enrollment Periods for Consumers with "Medically Needy" or "Spend-Down" Medicaid
The Centers for Medicare and Medicaid Services (CMS) have provided guidance about when consumers participating in a "medically needy" or "spend-down" state program will be able to get a special enrollment period once their Medicaid coverage ends. These consumers
will have 60 days from the date Medicaid coverage ends to enroll in a health plan through the Marketplace. The consumer should answer "yes" to the question on the application that asks if he or she recently lost health coverage. The consumer should not indicate on the application that he or she currently has Medicaid. If you are enrolled in “In the Loop,” you can read this post about SEPs for Medically Needy Medicaid beneficiaries.

Other Special Enrollment Periods Announced

The administration has recently announced and explained several new Special Enrollment Periods (SEPs) and “hardship exemptions” under which consumers can enroll in Marketplace coverage outside the open-enrollment period. These SEPs apply to the Federally-Facilitated Marketplace (FFM), but states could adopt them as well. They are available to:

  • Consumers enrolled in non-marketplace plans that renew mid-year: Some consumers may be enrolled in non-marketplace plans that do not follow the calendar year. If a consumer chooses not to renew his non-marketplace plan, he is eligible for an SEP to enroll in FFM coverage mid-year.
  • Consumers currently enrolled in COBRAonly between Now and July 1, 2014:

Consumers who are currently enrolled in COBRA continuation have the option of switching to a Marketplace plan between now and July 1, 2014. If interested, COBRA enrollees should call the Marketplace Call Center at 1-800-318-2596, and inform the Call Center that they are calling about their COBRA benefits and the Marketplace. See this page on Once determined eligible, consumers can view all plans available to them and continue the enrollment process over the phone or online, by creating an account on HealthCare.Gov or logging into their existing account. 

  • AmeriCorps/VISTA/National Civilian Community Corps Members (NCCC): AmeriCorps State and National, VISTA or NCCC program members (and their dependents) who are beginning OR concluding their service and losing access to coverage (including short-term and group coverage that is not Minimum Essential Coverage) through one of these programs are eligible for SEPs in the FFM based on “exceptional circumstances.”

More on Options for Post-Employment Coverage:  for consumers; for assisters. A press release announcing the Department of Labor’s proposal to clarify COBRA notices is available here.

Hardship Exemptions

These hardship exemptions are applicable to both the FFM and state-based marketplaces and are available to:

Consumers who enrolled in non-marketplace Minimum Essential Coverage (MEC) plans, but were uninsured prior to May 1, 2014. The recent guidance extends the hardship exemption for consumers who purchased coverage through the marketplaces to those who also purchased MEC coverage outside of the marketplaces. The exemption covers the months a consumer did not have MEC prior to May 1, 2014.

AmeriCorps/VISTA/National Civilian Community Corps Members. For 2014 only, members of AmeriCorps State and National, VISTA and NCCC programs who have non-MEC coverage provided by these programs can receive a hardship exemption for the months they have coverage and are engaged in program service.

Final Rule on Exchange/Insurance Market Standards for 2015 and Beyond

Last week, the US Department of Health & Human Services and the Centers for Medicaid and Medicare (CMS), issued the final rule for Exchange and Insurance Market Standards for 2015 and beyond. According to HHS,

“This rule will help to improve consumer protections, keep premiums affordable, and make additional information available to consumers in the future, such as quality ratings that will help them to better compare and choose plans.

“Specifically, today’s rule finalizes policies to:

  • Strengthen the prescription drugs exceptions process, so consumers with an urgent medical issue have quicker access to needed drugs that aren’t already covered by their plan
  • Require health insurance issuers to provide standardized notices to their enrollees when issuers decide to discontinue or renew coverage
  • Collect information from issuers to generate quality rating scores for plans on the Marketplace beginning in 2016
  • Provide flexibility to states to ensure SHOP works in the best interest of consumers in 2015
  • Strengthen standards for Navigators and other consumer assisters
  • Improve premium stabilization policies for 2015.”

The Final Rule is available here.

A fact sheet with detailed information on today’s rule can be found here.

FAQs are available here.

A blog authored by Mandy Cohen at the Center for Consumer Information and Insurance Oversight is available here.

Questions or Concerns? Contact

This blog post from Health Affairs discusses five of the most significant and controversial issues addressed by the final rule: the regulation of navigators; changes in the premium stabilization programs; the regulation of fixed-indemnity plans; provisions for state regulators to veto employee choice in the SHOP exchange for 2015; and procedures for enrollees to obtain an exception to formulary restrictions in exigent situations.


Policy Brief on FDA Approval Process for Drugs Providing Therapeutic Breakthroughs

A recent Health Affairs Policy Brief, summarized in this blog post, explains the implementation of a 2012 law which, among other things, created a new expedited development pathway for drugs intended to treat serious or life-threatening conditions. Under this pathway, a drug may be designated by the FDA as a “breakthrough therapy” if early clinical evidence indicates that the drug may demonstrate a substantial improvement over existing therapies. If a drug is so designated, the FDA is committed to working closely with the drug's sponsor to create an efficient development plan and facilitate its approval.


Special Enrollment Periods (SEPs)

A brief on SEPs from the National Health Law Program is available here.

Materials for consumer assisters from the Centers for Medicare and Medicaid Services (CMS):

  • New, customizable, materials about enrollment in Medicaid and the Children's Health Insurance Program (CHIP) posted on

More on post-employment coverage:  for consumers; for assisters. A press release announcing the Department of Labor’s proposal to clarify COBRA notices is available here.

Materials for consumers from Get Covered America: 

The website  features helpful info -- in clear language -- on Special Enrollment Periods (including specifics for people turning 26 and new moms) and year-round sign-ups for Medicaid and the Children's Health Insurance Program (CHIP).

Access to Habilitative and Rehabilitative Therapies under the ACA

The latest entry in the Family Voices Blog has been posted – “Accessing Therapies under the ACA” at In this post, Lauren Agoratus (SPAN of NJ) explains the improvements made to coverage of habilitative and rehabilitative services under the ACA; the importance of comparing health plans and the details of Essential Health Benefits, and what consumers can do now to be informed.


Spanish Language Mental Health Resources from SAMHSA

The Community Conversations About Mental Health: Information Brief is now available in Spanish at

State Respite Coalition Fact Sheets 

The ARCH National Respite Network and Resource Center has released a 2014 compendium of fact sheets from 32 State Respite Coalitions, available for downloading at (scroll down). Each fact sheet has been formatted to stand alone as a separate document. Individual fact sheets can be found under the contact information for each State Respite Coalition. The fact sheets describe each state’s unique respite coalition and the resources it has available. Most coalitions are focused solely on respite for family caregivers of all ages, but a few are broader in scope and promote additional caregiver supports. Nearly all are statewide and diverse, have an advocacy and oversight focus to promote respite at the state and federal levels, and engage in activities for networking, education, and enhancing public awareness about respite. Some also engage in research, service delivery, volunteer respite, voucher administration, and respite provider training and recruitment.


June 30 – Deadline for Former PCIP Enrollees to Enroll in a Qualified Health Plan

The Pre-existing Condition Insurance Plan (PCIP) terminated on April 30, 2014. Those who were covered under the PCIP will be eligible for a 60-day Special Enrollment Period starting on May 1. Thus, they will be able to enroll in a qualified health plan offered through the Federally-Facilitated Marketplace until June 30. State-based Marketplaces are adopting similar special enrollment periods. If the enrollee is otherwise eligible to enroll in a qualified health plan, coverage will be effective back to May 1. An HHS Fact Sheet explaining this process is available here, and the formal Notice is available here.

Survey on How Consumers Obtain Health Information

The Patient-Centered Outcomes Research Institute (PCORI), established under the ACA, is conducting research on how to make its health care research findings more readily available to consumers so they can use it to make health care decisions. Accordingly, they are seeking feedback from healthcare consumers and their family members, through a confidential two-question survey. Participants can add responses, suggest edits for existing responses, and rank existing responses. All feedback will help the researchers identify strategies to get information to health care consumers, their family members, and their providers sooner and help them use the information to make decisions about their health care. Take the survey at