April 23, 2014

April 23 Washington DC Update

April 23 Washington DC Update

Washington DC Update 4/23/14

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

Greetings from Washington!  The House and Senate were in recess last week, but the White House was open and proud to report that over 8 million people signed up for health insurance coverage through the federal and state marketplaces during the Affordable Care Act’s open enrollment period. For more on what this number and other statistics mean -- and don’t mean -- see this story from Politico. As explained below, the administration also announced that users of HealthCare.gov will have to change their passwords in light of the “Heartbleed” internet bug.


Starting and Supporting Family Advisory Groups. Thursday, April 24, 12:00-1:00 pm ET. Hosted by the National Center for Medical Home Implementation and the American Academy of Pediatrics, this webinar will define the term “family advisory group” and explain its potential effectiveness as part of a family-centered medical home approach to providing care. Additionally, it will describe strategies for implementation and provide examples of family advisory groups within actual pediatric practices. Register here. This webinar is part of a series Fostering Partnership and Teamwork in the Pediatric Medical Home (past webinars available on this website).

Medical Home Implementation and Innovation at the State Level. Thursday, April 24, 1:00-2:00 pm ET. The National Academy of State Health Policy will present a webinar on the innovative medical-home efforts in Vermont and Philadelphia, and their impact on cost and quality outcomes. Register here.

Autism Spectrum Disorder: From Numbers to Know-How. Thursday, April 24, 1:00-2:00 pm ET. The Centers for Disease Control and Prevention (CDC) will conduct a Twitter “chat” on the public health approach to autism as a follow-up to the Public Health Grand Rounds on autism spectrum disorder held on April 22. The conversation will be hosted by National Center for Birth Defects and Developmental Disabilities (NCBDDD) Director, Dr. Coleen Boyle (@DrBoyleCDC), and the American Academy of Pediatrics (@AmerAcadPeds). The chat will take place on Participate using hashtag #AutismPHGR. For more information on the Grand Rounds, see http://www.cdc.gov/about/grand-rounds/archives/2014/April2014.htm.

What Youth Leaders and Millennials Need to Know about Health Insurance and the Affordable Care Act. Tuesday, April 29, 7 pm ET. Family Voices and KASA (Kids As Self Advocates) will kick off a new webinar series on building and supporting youth leaders and advocates with this webinar presented by a representative of the group Young Invincibles. Topics include: How to attract emerging youth leaders, health insurance basics for youth with disabilities, supporting local/statewide youth leadership groups, and increasing youth leadership at the state and national levels. Logistics:  Watch for a “GoToMeeting” Invitation from Family Voices next week. For more information, contact Leslie Carroll, Director, Project IMPACT, National Family Voices, at lcarroll@familyvoices.org.

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.


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

Hearing on Law Enforcement Responses to People with Disabilities

On April 29, the Senate Judiciary Subcommittee on the Constitution, Civil Rights, and Human Rights, chaired by Senator Dick Durbin (D-IL), will hold a hearing on “Law Enforcement Responses to Disabled Americans:  Promising Approaches for Protecting Public Safety.”  The hearing will explore how Congress and the Executive Branch can support and strengthen the efforts of law enforcement agencies to improve training for officers responding to individuals with mental illness or developmental disabilities who are in crisis. A webcast of the hearing will be available on the Senate Judiciary Committee website.

Subcommittee staff contacted Family Voices to ask that we provide written testimony, and urge our network to do so as well. As noted in the hearing announcement, “such statements help educate Committee members about this issue and are important to demonstrating community interest.”  Statements must be submitted as a PDF or Word Document of 10 pages or less, and should be emailed to Durbin_Testimony@Judiciary-dem.Senate.gov no later than Monday, April 28, 2014 at 5:00 p.m. The Subcommittee cannot accept previously published information, such as newspaper articles or reports, as a statement for the record.

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

HealthCare.gov Users Must Change Passwords

On the ACA “Marketplace” website, www.healthcare.gov, the U.S. Department of Health and Human Services (HHS), says:  “While there’s no indication that any personal information has ever been at risk, we have taken steps to address Heartbleed issues and reset consumers’ passwords out of an abundance of caution. This means the next time you visit the website, you’ll need to create a new password.”  Information about how to change one’s password can be found at https://www.healthcare.gov/heartbleed/. More on the Heartbleed problem can be found in this AP story on Yahoo News.

Continuing Enrollment in Some States

Although open enrollment in the federal and most state Exchanges has ended, some state Exchanges are still allowing people to enroll if they had technical problems when they tried to do so before the deadlines. In the District of Columbia and Oregon, for example, the deadline has been extended until April 30, and in Nevada, until May 30. Read more in this story from The Hill.

Medicaid Coverage for Former Foster Youth

The ACA makes former foster youth eligible for Medicaid up to age 26, to parallel the provision allowing adult children to stay on their parents’ insurance policies until that age. Although this eligibility expansion is mandatory in all states, a new report from First Focus and the State Policy and Advocacy Reform Center (SPARC), prepared by experts at the Urban Institute and the Center for Law and Social Policy, points out that implementation of the requirement will vary widely, based on state policies and efforts to enroll these youth. The paper recommends that states automatically enroll children who age out of foster care, conduct major outreach and education efforts, and construct Medicaid benefits to meet the needs of former foster youths.

Pre-Existing Condition Insurance Program (PCIP)

The Affordable Care Act (ACA) established the PCIP program in 2010 for previously uninsured individuals with pre-existing conditions so they would be able to get insurance before January 2014, when insurers were required to cover all applicants without regard to health status. The program was originally supposed to sunset at the end of December 2013, but it was extended three times, ultimately through April 30, 2014. According to a Washington Post “Wonkblog” post, it is not expected that this deadline will be extended again.


National Prescription Drug Take-Back Day

The Drug Enforcement Agency (DEA) is sponsoring the National Prescription Drug Take-Back Day on this Saturday, April 26th, from 10:00-2:00 p.m. This effort is intended to “provide a safe, convenient, and responsible means of disposing of prescription drugs, while also educating the general public about the potential for abuse of medications," according to the DEA website. Click here to locate a collection site in your area, or call 1-800-882-9539.

Opportunity to Comment 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#sthash.QfmCGY0C.dpuf.

Money Follows the Person: Tribal Initiative

CMS recently awarded funding to five Money Follows the Person (MFP) grantees – Minnesota, North Dakota, Oklahoma, Washington and Wisconsin – for the MFP Rebalancing Grant Demonstration Tribal Initiative. This initiative offers existing MFP state grantees and tribal partners the resources necessary to build a sustainable community-based long term services and supports system specifically for Indian country, as an alternative to providing these services and supports in an institution. More information about this initiative, including state point of contacts, is available at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services-and-Supports/Balancing/Money-Follows-the-Person.html.

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 Federation of Families for Children’s Mental Health will also be celebrating Children’s Mental Health Awareness Day. See the “Resources” section below for information.

ADA Penalties Increased

As reported in this story from Disability Scoop, penalties for violations of the Americans with Disabilities Act (ADA) will be increased for the first time since 1999. Under the law, businesses open to the public must be accessible to people with disabilities. Failure to comply with the law will now bring penalties of up to $75,000. Previously, the maximum was $55,000. For subsequent offenses, the fine will jump to $150,000 from a prior cap of $110,000. These sums account for changes in inflation since the penalty figures were last set, and will apply to violations that occur after April 27.


Referral and Resource List Fact Sheet from the National Disability Navigator Resource Collaborative

The National Disability Navigator Resource Collaborative (NDNRC) has released a new fact sheet, “Referral and Resource Lists,” to help Navigators identify additional resources available to assist consumers with disabilities as they make decisions related to their healthcare coverage.

The NDNRC also has 12 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.

Tax Consequences and Exemptions related to the Individual Insurance Mandate

Consumers who have not secured health insurance for 2014 may have to pay a penalty when they file federal income taxes next year, or might be able to take action now to avoid the penalty. Enroll America has released a table showing which uninsured individuals may have to pay the penalty and what they need to do to apply for an exemption.

Resources for Consumers Who Lack Insurance

  • Find a health center near you by calling the Health Resources and Services Administration at 877-464-4772, or by using the search tool online at http://findahealthcenter.hrsa.gov/Search_HCC.aspx.
  • Get help paying for prescription drugs by calling NeedyMeds at 800-503-6897, or by going online at http://www.needymeds.org/index.htm.
  • Get help with finding other health care services by calling the Patient Advocate Foundation at 800-532-5274.


Updated State Medicaid Integration Tracker

The National Association of States United for Aging (NASUAD) has published its April 2014 Edition of the State Medicaid Integration Tracker, which is updated each month. The State Medicaid Integration Tracker © focuses on the status of the following state actions:

  1. Medicaid Managed Long Term Services and Supports (MLTSS);
  2. State Demonstrations to Integrate Care for Dual Eligible Individuals and other Medicare/Medicaid Coordination Initiatives; and
  3. Other LTSS Reform Activities, including:
  • Balancing Incentive Program
  • Community First Choice Option under §1915(k)
  • Medicaid Health Homes

Click here to download a PDF of the entire tracker. To search the tracker by state, click here.

Home and Community-Based Settings Transition Toolkit

The Centers for Medicare and Medicaid Services (CMS) recently updated the Home and Community-Based Settings Transition Toolkit it issued on March 20. The toolkit provides information about how states can comply with the requirements established in the recently published home and community-based services regulations. CMS suggests discarding prior versions of the toolkit.

The National Federation of Families for Children's Mental Health -- Children's Mental Health Awareness Week

The National Federation of Families for Children's Mental Health will be observing Children's Mental Health Awareness Week in various ways:

  • They have an updated Advocacy Toolkit to help families, youth and organizations raise awareness and advocate for positive children's mental health practices. 
  • They are conducting a poster contest. Click here for more information or to submit artwork.

More information about the organization’s activities for the week can be found at www.ffcmh.org/awarenessweek.

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


Yours truly,




Janis Guerney, Esq.


Brooke Lehmann, MSW, Esq.


Lynda Honberg