May 07, 2014

May 7 Washington DC Update

May 7 Washington DC Update

Washington DC Update 5/7/14 - submitted

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

Greetings from Washington!  Congress is back in session and the administration has released some more numbers on ACA enrollment.


Beyond the Basics of Exemptions and Special Enrollment Periods 

Wednesday, May 7, 1:00-2:30 pm ET

The Center on Budget and Policy Priorities will present an updated version of its March 26th webinar on exemptions and special enrollment periods. The webinar will focus on the triggers and timing for special-enrollment periods, including new guidelines for limited-circumstances special-enrollment periods for complex cases, and will focus on how people can qualify for exemptions from the penalty for not having health coverage. If you would like to review the original webinar from March 26th, you can watch it here. Register for the May 7 webinar here. Space is limited.

Emergency Preparedness: Nontraditional Emergency Shelters and People with Disabilities

Thursday May 8, 2014, 2:00-3:30 pm ET

The Great Lakes Americans with Disabilities Act (ADA) Center will be hosting this webinar focusing on how to establish non-traditional shelters (e.g., soft-sided structures in open areas or as mega-shelter sites) to meet disaster survivors’ immediate needs or the need to locate residents closer to their community during the recovery phase. The webinar will identify specific planning considerations relative to non-traditional sheltering in order to adequately meet the needs of the whole community. To register, visit the ADA Conferences website. For questions regarding registration and/or the webinar platform, contact or call 877-232-1990 (V/TTY).

Making it Work: A Series of Webinars

The National Technical Assistance Center for Children's Mental Health at Georgetown University will be conducting several webinars this month on topics relating to young adults with behavioral health problems. The May 9 webinar will focus on the development of young adult peer support programs.

  • Friday, May 9, 12:00-1:30 pm ET. Understanding Why Young Adult Peer-to-Peer Support Is Uniqu

Future webinar topics are:

  • Friday, May 15, 2014, 1:00-2:30 pm ET. Early Intervention for Young Adults Experiencing Mental Illness with Psychosis
  • Friday, May 22, 1:00-2:30 pm ET. Family, Young Adult & Adult Peer Support -- Limitless Possibilities

For more information, and to register, click here.

Making the VR [Vocational Rehabilitation] Connection!

Thursday, May 15, 1:00-4:00 pm ET

The Youth Transitions Collaborative, in partnership with the U.S. Department of Education, Office of Special Education and Rehabilitative Services (OSERS), will host this webinar, which is designed to inform youth with disabilities, their family members, practitioners, Vocational Rehabilitation (VR) counselors, educators, public and private sector agencies, and other stakeholders about the importance of collaboration to ensure a smooth transition process for students with disabilities as they exit school and prepare for post-school activities. The webinar will be captioned, recorded, and archived. Register here.

Health, Behavior, and Healthy Behavior for Children and Adults with Intellectual/Developmental Disabilities

Friday, May 16, 2:00-3:00 pm ET
The Association of University Centers on Disability is sponsoring this webinar to review some of the health-related considerations and the importance of understanding health promotion in preventing unnecessary medical and behavioral complications for people with intellectual/developmental disabilities (I/DD). These individuals are more likely to have health-related problems while confronting challenges in accessing appropriate health care, complicated by limitations in communication and by some behavioral expressions of distress. Register here.

Community First Choice Option: State Consideration and Implementation

Friday, May 16, 2:00-3:30 pm ET 

The Friday Morning Collaborative presents this webinar on the Medicaid Community First Choice Option, which provides states with a new opportunity and financial incentive to expand access to home and community-based services to individuals with disabilities and seniors. This webinar will feature insights from three states (Colorado, Montana, and Oregon) that are actively considering or implementing the Community First Choice Option. For more information and to register, click here.

Enrolling Vulnerable Youth in Medicaid and CHIP

Thursday, May 22, 2014, 2:00 - 3:30 pm ET

The Connecting Kids to Coverage National Campaign will host this webinar about enrolling children who are homeless or aging out of foster care. Reaching these populations requires special considerations and outreach tactics. This webinar will feature policy experts from the Centers for Medicare & Medicaid Services, Administration for Children and Families, and non-governmental organizations to discuss recent policy updates and best practices for reaching out to and enrolling this specific population. Register here.


Hearing on Law Enforcement Responses to People with Disabilities

On April 29, the Senate Judiciary Committee’s Subcommittee on the Constitution, Civil Rights and Human Rights, chaired by Senator Dick Durbin (D-IL), held a hearing on “Law Enforcement Responses to Disabled Americans: Promising Approaches for Protecting Public Safety.”  Witnesses included Denise O'Donnell, Director of the Bureau of Justice Assistance, Department of Justice, law enforcement officials, and the mother of a 26-year-old man with Down syndrome who was asphyxiated when three off-duty Sheriff’s deputies roughly restrained him because he tried to stay for the second showing of a movie without a ticket.

Senator Durbin stated, “Due to inadequate mental health and social services, police officers have become the first responders for disabled individuals in crisis. Law enforcement did not ask for this additional challenge, but it was forced upon them.According to this article on the hearing from Disability Scoop, the federal government sent about $8 million in grants to states and counties last year to address police interactions with people with mental illness. But Durbin noted, “There’s never been adequate funding.” A video of the hearing and the testimony are available on the subcommittee website.

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

New Special Enrollment Period for COBRA-Eligible Individuals and Beneficiaries – Through July 1, 2014

Under proposals announced last week, employers will have to provide clearer information to employees regarding the availability of potentially subsidized health insurance on the Exchanges in addition to the availability of coverage under COBRA (Consolidated Omnibus Budget Reconciliation Act). See this article from The Hill.

In addition, the Department of Health and Human Services (HHS) issued a bulletin announcing a special enrollment period in the Federal Marketplace for individuals eligible for or already enrolled in COBRA continuation coverage. According to that bulletin, HHS was concerned that current information provided to employees did not make it sufficiently clear that, under current federal regulations, those eligible for COBRA were permitted to enroll through an Exchange outside of the open-enrollment period only when: (1) such persons initially are eligible for COBRA due to a loss of other minimum essential coverage; and (2) when such persons’ COBRA coverage is exhausted; and that those already enrolled in COBRA can enroll in an Exchange plan only during the annual open enrollment period or if they are determined eligible for any other special enrollment period outside of the open enrollment period.

Therefore, HHS decided to establish a special enrollment period so that persons eligible for COBRA and COBRA beneficiaries are able to select health plans in the Federal Marketplace. Affected individuals have through July 1, 2014, to select a health plan in the Federal Marketplace. These individuals should call the Marketplace call center and tell them that they are calling about their COBRA benefits. Once determined eligible for the special enrollment period, consumers can then view all plans available to them and continue the enrollment process over the phone or online through creating an account on or logging into their existing account.

In addition, the Department of Labor (DoL) has developed new notices for employers to provide to employees regarding COBRA and the ACA. The Departments of Labor, Health and Human Services, and Treasury have published frequently asked questions related to the proposed changes to model notices. The FAQs are posted on the Department of Labor website and the HHS website. A related notice of proposed rulemaking on the COBRA notice requirements will be published in the May 7 edition of the Federal Register and can also be viewed here.

An explanation of this issue can be found in this post from the Health Affairs blog.

Additional Special-Enrollment Populations

In addition to those who would be eligible for COBRA coverage (see above), the administration has broadened the number of people who can buy individual health coverage on the Exchanges this year before the next open-enrollment period begins on November 15. These include people whose individual plans will renew outside of the sign-up periods, and those in national service programs like AmeriCorps and VISTA. See this story from the newsletter of the Commonwealth Fund.

ACA Enrollment Statistics

Last week, the administration issued a report providing final figures about the number of people who obtained insurance during the first open-enrollment period under the Affordable Care Act (ACA). More than 8 million people enrolled in health plans through Exchanges – about 2.6 million through State Based Marketplaces and over 5.4 million in the Federally-facilitated Marketplace. About 2.7 million of the enrollees were ages 0 to 34, and of these, 2.2 million (28 percent) were young adults ages 18 to 34. A large pool of younger people is considered beneficial to the risk pool since they are generally thought to be healthier than older individuals.   About 85 percent of the enrollees qualified for subsidies to help purchase health insurance on the Exchanges. The report did not indicate how many people had paid their premiums so far.

In addition, more than 4.8 million additional individuals enrolled in Medicaid and the Children’s Health Insurance Program (CHIP), compared to enrollment before the enrollment period began on October 1, 2013.

For more information, see this press release summarizing the data, including the demographic characteristics of enrollees (age, race, ethnicity, gender). Other material:


FDA Warning about Unproven Autism Treatments

Given that April was Autism Month, the federal Food and Drug Administration (FDA) issued a Consumer Update to educate people about unproven treatments for autism, and announced that it has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism. Noting that some of these therapies have been approved for other conditions, the FDA listed some of the “‘so-called’ [autism] therapies [that] carry significant health risks”:  certain chelation therapies, including sprays, suppositories, capsules, liquid drops, and clay baths; hyperbaric oxygen therapy; Miracle Mineral Solution (also known as Miracle Mineral Supplement and MMS), which can cause life-threatening low blood pressure; and CocoKefir probiotics products.

Dramatic Increase in Autism Research

On April 30, the federal Interagency Autism Coordinating Committee (IACC) released  its 2013 Strategic Plan Update, which provides an overview of funding and scientific advances made in autism research since 2009, when the IACC Strategic Plan for ASD Research was first published. According to the IACC press release, approximately $1.5 billion has been dedicated to ASD research over the past 5 years through the combined efforts of U.S. government agencies and private organizations. IACC Chair and National Institute of Mental Health (NIMH) Director Dr. Thomas Insel said, “The state of the science has dramatically changed in the ASD field over the last 5 years….This investment has translated to progress in all seven research areas outlined by the Plan,” which include risk factors, treatments and interventions, services, lifespan issues, and surveillance and infrastructure. According to this article in Disability Scoop, the IACC reported that more than 11,000 studies on autism have been published since 2009, twice the number issued in the preceding five years.

Model Policy on Telemedicine

[from this week’s Legislative News of the Association of University Centers on Disability]

The Federation of State Medical Boards (FSMB) adopted a “model policy on the appropriate use of telemedicine technology in the practice of medicine” at its annual meeting on April 26. The policy is not binding for state boards, but was intended to provide guidance in a rapidly changing health-care environment, according to a FSMB statement. The policy has proved controversial. The American Telemedicine Association urged the FSMB to change several provisions in the policy, including allowing reciprocal licensing agreements so physicians can practice telemedicine across state lines, and broadening the definition of telemedicine beyond videoconferencing to included telephone, email, text, and other communications. Six national organizations - including AUCD partners Family Voices, United Spinal Association, and the National Multiple Sclerosis Society - published an open letter in the Thursday, May 1 issue of [the Capitol Hill newspaper] Roll Call, addressed to the FSMB chairman and urging the Federation to revisit the policy, stating that the policy “did not account for many of the safe, secure ways patients are accessing health care today, including ‘audio-only’ telephone.” For more information, see this report from Kaiser Health News.


Additional Information from the National Disability Navigator Resource Collaborative

In addition to its numerous fact sheets, and its Guide to Disability for Healthcare Insurance Marketplace Navigators, the National Disability Navigator Resource Collaborative (NDNRC) provides a number of resources to assist people with disabilities who might be eligible for a Special Enrollment Period (SEP) under the ACA, including a presentation done by the Administration for Community Living (ACL) on assisting people with disabilities in the marketplace, and two from the Centers for Medicare and Medicaid Services (CMS), as described below. In addition, the NDNRC blog post this week addresses “Churning – What is It & What Do I Need to Know?”

CMS Resources on Special Enrollment Periods

The Centers for Medicare and Medicaid Services (CMS) released two presentations regarding Special Enrollment Periods (SEPs) under the ACA: one on assisting consumers in reporting a life event and the other on enrolling in insurance due to limited circumstances or qualifying life events.

Resources from Families USA on Special Enrollment Periods and More

A number of tools are available at the Families USA Enrollment Assisters Resource Center. Among these are:

NOTE:  The fact sheets are also available as Microsoft Word documents, which can be modified with information state-specific information and to which a logo can be added. If you would like these fact sheets as word documents, please send an email to

Powerpoint presentation that can be used to conduct outreach and public education about: the Affordable Care Act, what consumers need to know about enrolling in and using health insurance, and what organizations in your community can do to help consumers. If you would like to use this presentation, please send an email to


FREDLA Diverse Leaders Scholarship Program 

The Board of Directors of the Family Run Executive Directors Leadership Association (FREDLA) is offering a $2,000 scholarship for one person to attend the Diverse Leaders Scholarship Program for Executive Directors of family-run organizations and authorized leaders of American Indian and Alaskan Native communities. The FREDLA Diverse Leaders Scholarship Program is a racial/ethnic minority scholarship program to promote diverse leadership within family-run organizations focused on the well-being of children and youth with mental health, emotional or behavioral challenges and their families. The Program seeks to lower financial barriers to training and to highlight the accomplishments of a diverse group of family leaders. The scholarship application can be found here.

AAP Policy Statement on Care Coordination

The American Academy of Pediatrics (AAP) published the policy statement Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems, in the May issue of Pediatrics. This policy, co-authored by the AAP Council on Children with Disabilities and the Medical Home Implementation Project Advisory Committee, is intended to provide practical application of care coordination integration in practices and communities. An accompanying article in AAP News, Beyond the Medical Home: Coordinating Care for Children, also highlights the importance of this policy.

To further augment and facilitate the application of the recommendations within this policy statement, the free, online Pediatric Care Coordination Curriculum provides content which can be adapted to the needs of any entity (e.g., a single practice, a network of practices, parent and family organizations, or a state-wide Title V MCH program). By design, the majority of the content is universally relevant, but optimal use of the curriculum results when it is adapted and customized to reflect local needs, assets, and cultures. More information on care coordination is available through the National Center for Medical Home Implementation website.

Case Study:  Examples of Patient/Family Participation in Advisory Councils at Georgia Medical Center

The federal Agency for Healthcare Research and Quality (AHRQ) has published a Service Delivery Innovation Profile about how current and former patient and family advisors have contributed to improved patient satisfaction and better organizational performance at the Georgia Regents Medical Center, where patients and families participate in a variety of patient advisory councils and on every clinic, department, and hospital committee. According to this synopsis, this penetration of patient advisers at top institutional levels as well as on every unit and committee ensures that they have active and ongoing input into all hospital operations and planning. Patient advisers also provide support to “peers” (current patients/family members going through similar treatment), assist with staff and student education and training, and participate in other activities related to patient-centered care, including unit rounding, research, conference planning, and recognition of outstanding staff. The program has contributed to improvements in patient satisfaction and in key metrics of organization-wide performance, and has received positive reviews from medical students.


May 8 -- National Children’s Mental Health Awareness Day 2014

The Substance Abuse and Mental Health Services Administration (SAMHSA) will be recognizing National Children’s Mental Health Awareness Day (“Awareness Day”) this year by focusing on peer support to help young people with behavioral health conditions make the transition to adulthood. From April 15 through Awareness Day on May 8, SAMHSA is hosting a “hashtag showcase” where young adults across the country who have experience with mental and/or substance use disorders can share their personal stories relating to obtaining and/or providing peer support. Using the hashtag #IGetSupportFrom, young adults can share photos, videos, tweets, and status updates showing how peer support has helped them tackle challenges related to housing, education, employment, and health care. The hashtag can be used in messages posted on Twitter, Facebook, Instagram, or Tumblr. More information is available here.

The National Federation of Families for Children's Mental Health will also be celebrating Children’s Mental Health Awareness Day. See

May 12 -- Comments due on new diagnostic criteria for autism spectrum disorders

Several institutes of the National Institutes of Health are requesting input from the scientific community, health professionals, self-advocates, and patient advocates about the research implications of the recent, controversial changes to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for Autism Spectrum Disorders (ASD). For background information, see this story in Disability Scoop. The official notice and instructions for submitting comments, due on May 12, can be found at

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

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


Yours truly,




Janis Guerney, Esq.


Brooke Lehmann, MSW, Esq.


Lynda Honberg