April 30, 2014

April 30 Washington DC Update

April 30 Washington DC Update

Washington DC Update 4/30/14 - submitted

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

Greetings from Washington!  The House and Senate were in recess last week, and the rest of the city was relatively quiet as well. The White House issued a fact sheet about the success of the Affordable Care Act (ACA) to date, and the Washington Post reported that the number of people seeking exemptions from the individual mandate to have health insurance is lower than might have been expected. Read more below.


Navigating Insurance Issues Wednesday, April 30, 1:00 pm ET. This webinar will focus on how health insurance coverage for patients with rare diseases has undergone significant changes in recent years, including changes arising from the Affordable Care Act. Different types of health insurance and emerging trends in benefit design and affordability for individuals will be discussed, along with ways to determine how to evaluate plans to meet needs of rare disease patients or caregivers. Register here.

Helping Consumers after Open Enrollment Wednesday, April 30, 2:00 pm ET. Families USA will present this webinar, at which the State Coordinator for Outreach and Enrollment at the Kentucky Primary Care Association and a representative of the Health Federation of Philadelphia will talk about how their enrollment assistance programs are planning for the months before the next open enrollment period begins in November. In addition, Families USA staff members will discuss the types of assistance consumers need now, effective strategies to continue public education and assistance, and lessons learned that can help you build on the successes of the first open enrollment period. Register here.

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.  Space is limited.  Register for the May 7 webinar here


Congress was in recess last week. The House and Senate returned to Washington on April 28.

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

HealthCare.gov Users Must Change Passwords; Many State Exchange Users Need Not

Clarification:  Last week’s Update reported that the U.S. Department of Health and Human Services (HHS) recommends that individuals who created accounts on www.healthcare.gov change their passwords, due to the “Heartbleed” security issue affecting numerous internet sites. In fact, passwords were all reset on the Federal Exchange, so users of HealthCare.gov will be required to reset their passwords. Information about how to change one’s password can be found at https://www.healthcare.gov/heartbleed/.

Apparently, many state Exchanges are not concerned about the “Heartbleed” problem. According to this article in a business publication, Morning Consult, at least nine state Exchanges are not advising consumers to change their passwords because they do not think their operating systems are vulnerable to problems caused by the “Heartbleed” virus. There are 17 state-run Exchanges and seven that are partnerships between the state and federal governments.

Enrollment and Exemption Numbers

Enrollment. The White House released a fact sheet about the numbers of people who gained insurance coverage during the open-enrollment period under the Affordable Care Act (ACA), and about the Act’s effects on national health care costs. About 8 million people signed up for health insurance through the federal Marketplace; 3 million young adults gained coverage by staying on their parents’ plans; and 3 million more people were enrolled in Medicaid and CHIP during the open-enrollment period. (Medicaid and CHIP enrollment continues year-round.)  In addition, 5 million people enrolled in plans that meet ACA standards outside the Marketplace.

Exemptions. The Washington Post reported that about 77,000 individuals and families have applied for exemptions from the ACA’s individual mandate. Of the approximately 26,000 applications processed so far, none have been rejected. These numbers only provide a snapshot, however, because people can apply for exemptions year-round and some people will obtain an exemption when they file their 2014 taxes next year. Others need not apply for an exemption; they are automatically exempt, for example, if they make too little money to be required to file tax returns.

The single largest group of people who have applied for exemptions so far are exempted categorically by the law – members of federally recognized American Indian or Alaska Native tribes – since the federal government is already responsible for their health care through the Indian Health Service. Even if they apply for an exemption, they may still decide to purchase health insurance, however.

According to the article, the second largest group of people who have applied for exemptions – about 11,000 -- have done so based on their religious beliefs, another exemption allowed in the law.

Individuals who would have been able to join Medicaid if their states took up the health law’s optional expansion of the program are also exempt from the individual mandate. According to a Kaiser Family Foundation analysis, that could encompass about 7.6 million individuals, although most will be automatically exempt since their incomes are so low that they are not required to file taxes.

Special Enrollment Period for those in Pre-Existing Condition Insurance Program (PCIP)

As reported in last week’s Update, the PCIP will terminate on April 30, 2014. The administration announced last week that individuals who have been 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 for these individuals. 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 https://pcori-patient.codigital.com/c/pcori-patient/user/login.

SAMHSA Announces New Grant Program: “Now is the Time” Healthy Transitions

In support of  the President's "Now is the Time" (NITT) Plan, the Substance Abuse and Mental Health Services Administration (SAMHSA) is announcing a new grant program, "Now is the Time" Healthy Transitions: Improving Life Trajectories for Youth and Young Adults with, or at Risk for, Serious Mental Health Conditions, or  NITT-Healthy Transitions (NITT-HT). The purpose of this program is to improve access to treatment and support services for youth and young adults ages 16 - 25 that either have or are at risk of developing a serious mental health condition. The NITT-HT also seeks to address behavioral health disparities among racial and ethnic minorities by encouraging the implementation of strategies to decrease disparities in access, service use, and outcomes. Eligibility for the grants is limited to states, tribal organizations, US territories, and the District of Columbia.

New Rules for Disability Caregivers Prompt Changes in States

A recent Department of Labor rule requires that “direct care” workers -- home-based workers for people who need assistance due to health problems – receive the federal minimum wage of $7.25 an hour and overtime pay. Since some of these workers are paid via Medicaid, the new federal rule is forcing many states to rethink how they look at Medicaid payments, as reported in this article from Disability Scoop.


Another New Fact Sheet from the National Disability Navigator Resource Collaborative

The National Disability Navigator Resource Collaborative (NDNRC) has released a new fact sheet, Information for People on Medicaid Home and Community-Based Services Waiver Waiting Lists.” This fact sheet is intended to provide Navigators with information about people with disabilities who are on Medicaid Home- and Community-Based Services (HCBS) Waiver waiting lists. The NDNRC also has 13 other ACA-related fact sheets, available here, and a Guide to Disability for Healthcare Insurance Marketplace Navigators, all of which provide information to help those assisting people with disabilities to select the most appropriate health plan and navigate the new health insurance landscape. In addition, the NDNRC website provides state-specific resources with contact information for the state assistive technology program and local chapters of the NDNRC partner organizations, including the National Alliance on Mental Illness, the National Multiple Sclerosis Society, and The Arc.


April Issue of the “Friends of NCBDDD” Newsletter

The most recent newsletter of the “Friends of the National Center for Birth Defects and Developmental Disabilities” (Friends of NCBDDD), of which Family Voices is a member, includes an article by Family Voices co-founder Julie Beckett about the recent losses of loved ones in families who are part of the Family Voices network -- LaToya Landrey of Mississippi, daughter of Phyllis Landry; Bridget Mitchell of Vermont, daughter of Maureen Mitchell; and Nick Arango, son of Polly and John Arango. Polly Arango, who died in 2010, was also one of the founders of Family Voices, along with Julie and Josie Woll, both of whom now serve on the Family Voices Board of Directors. Julie Beckett’s daughter Katie – who also became an advocate, and with whom an important Medicaid waiver is associated -- passed away in 2012.

The April Friends of NCBDDD newsletter also contains useful information about the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network, and on the resources about Autism Spectrum Disorder found in Georgetown University’s Maternal and Child Health Library, among other items of interest.

Archive of the CDC’s Public Health Grand Rounds on Autism

Last week, CDC hosted the first ever Public Health Grand Rounds on Autism Spectrum Disorder (ASD), of which an archived version can be found at http://www.cdc.gov/about/grand-rounds/archives/2014/April2014.htm. Also available is a video interview with Jon Baio, Principal Investigator of the Autism and Developmental Disabilities Monitoring (ADDM) Network, in which Baio discusses some of the challenges of understanding and diagnosing ASD.

State Information on EPSDT

The National Academy for State Health Policy (NASHP) has developed an interactive map providing state-specific information about strategies for delivering the Medicaid Early and Period Screening, Diagnosis and Treatment (EPSDT) benefit for children and adolescents in states around the country. Information from state Medicaid agencies is provided on a variety of topics including:

  • General and specific definitions of medical necessity used by states
  • Initiatives to improve access to preventive and treatment services for children
  • Reporting and data collection strategies around children's services
  • Approaches to behavioral health screening and service delivery
  • Resources developed to support providers and families
  • Initiatives to improve care coordination for children
  • Oral health service delivery for children

Realizing Rural Care Coordination: Considerations and Action Steps for State Policy-Makers

The National Academy for State Health Policy (NASHP) also has released a brief on ways to promote better coordination of patient care in rural areas. The brief draws from health initiatives undertaken in Alabama, Colorado, Montana, New Mexico, North Carolina, and Vermont to identify common policy considerations and action steps for coordinating care in rural areas. Although it is aimed at state policy makers, it might also be helpful for advocates trying to influence state policy.



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 www.ffcmh.org/awarenessweek.

Due May 12 -- Comments 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 http://grants.nih.gov/grants/guide/notice-files/NOT-HD-14-012.html

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


Yours truly,




Janis Guerney, Esq.


Brooke Lehmann, MSW, Esq.


Lynda Honberg