May 16, 2014

May 14 Washington DC Update

Washington DC Update 5/14/14 - submitted

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

Greetings from Washington!  The Senate is back in session this week, while the House is in recess.  Read below for information on various bills to address autism spectrum disorder, mental health policy, and TRICARE benefits for military dependents with developmental disabilities.

We look forward to seeing some of you in Washington next week, when you will have a chance to educate your Members of Congress about the importance of family-centered care, the value of family-to-family assistance, and the effective and efficient ways that Family-to-Family Health Information Centers (F2Fs) are using their federal grant funds to help children/youth with special health care needs and their families.


Affordable Care Act 101 Basics for Urban Indian Populations

Wednesday, May 14, 2:45-4:00 pm ET

Presented by the National Network to Eliminate Disparities. The Affordable Care Act created special rules for Indian populations. This webinar provides an overview of the basics of the ACA law and its effect on urban American Indians and Alaska Natives in order to support outreach and enrollment efforts.  Register here.

Audio Conference Number: 1-877-394-5901; Access Code: 2743401

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.  [CORRECTION:  Apologies, but last week’s Update incorrectly identified the below dates as Fridays.  The webinars are occurring on Thursdays.]

Future webinars are:

  • Thursday, May 15, 1:00-2:30 pm ET. Early Intervention for Young Adults Experiencing Mental Illness with Psychosis
  • Thursday, 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.

Health Insurance Literacy Webinar for Champions for Coverage

Wednesday, May 21, 2:00 pm ET

Sponsored by the Centers for Medicare and Medicaid Services, Champions for Coverage Program.

This webinar will provide updated information on health insurance literacy. Questions can be submitted in advance to Please reference the Health Insurance Literacy PowerPoint on under the “Get training” tab before the presentation. Webinar link:   

Toll-Free Dial-In Number:  (800) 837-1935; Conference ID:  44812468

Enrolling Vulnerable Youth in Medicaid and CHIP

Thursday, May 22, 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.

Promoting Help-Seeking Among College Students: Strategies for Suicide Prevention

Thursday, May 22, 3:00-4:30 pm ET

Presented by the Suicide Prevention Resource Center

This webinar will focus on one component of a comprehensive, public health approach to suicide prevention and mental health promotion on campuses: increasing student help-seeking. Presenters will share recent research findings and will describe strategies their campuses are employing to increase the likelihood that a student who needs mental health services will seek out and secure assistance.

Register here


Combating Autism Act – Reauthorization Bill Includes Provision on Transition

On Friday, Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA) introduced a bill to reauthorize the Combating Autism Act (H.R. 4631) for five years. The bill, which has 35 bipartisan co-sponsors, would require the US General Accountability Office (GAO) to complete a study on the demographics and needs of individuals with autism spectrum disorder who are making the transition from school-based support system to adulthood.  It would also make changes to the Interagency Autism Coordinating Committee (IACC), permitting the HHS Secretary to oversee the implementation of the IACC strategic plan and to ensure that research and activities of HHS are not unnecessarily duplicative.  Advocates are pleased that the bill has strong bipartisan support, but some are disappointed that it does not authorize additional services or change the title of the law (due to the potentially offensive word “Combating”).  A Senate bill is expected to be introduced soon.

Caring for Military Children with Developmental Disabilities Act

On Monday, May 12, Representatives John Larson (D-CT) and Tom Rooney (R-FL) introduced legislation to require the military’s TRICARE health insurance program to ensure access to behavioral treatments for military families who have children with developmental disabilities.  See this press release from Rep. Larson.

Later this week, Senators Murray (D-WA), Blunt (R-MO), Gillibrand (D-NY), and Rubio (R-FL) plan to introduce a bipartisan bill entitled "Caring for Military Children with Developmental Disabilities Act of 2014."  The bill would amend the military’s TRICARE health insurance program to provide "behavioral health treatment, including applied behavior analysis," to children with developmental disabilities (as defined by the Developmental Disabilities Act). 

Controversy over Competing Mental Health Bills

An interesting article in USA Today explains the divide that has arisen among various mental health advocacy groups over two different bills intended to improve mental health care in this country.  Considering these differences, it is unclear whether any changes in federal law will make it through the legislative process.  One of the bills--the “Helping Families in Mental Health Crisis Act” (H.R. 3717)--was introduced by Rep. Tim Murphy (R-PA), a psychologist, and has nearly 80 cosponsors from both sides of the aisle, although most are Republican.  That controversial bill would, among many other things, make it easier to compel individuals to get certain types of treatment (e.g., “Assisted Outpatient Therapy”), and alter privacy laws to make it easier for families to obtain medical records of their loved ones who are in an acute mental crisis.  Another bill, introduced by Rep. Ron Barber (D-AZ) – the “Strengthening Mental Health in Our Communities Act” – would “maximize the access of individuals with mental illness to community‐based services and strengthen the impact of those services.”  Different well-respected national mental health organizations have endorsed one or the other of these bills.


Care Planning for Children and Youth with Special Health Care Needs

The Lucile Packard Foundation for Children’s Health has issued a report, Achieving a Shared Plan of Care with Children and Youth with Special Health Care Needs, which outlines  the recommended core content of a comprehensive and integrated plan care plan, and the steps necessary to create one.  This webpage contains links to the White Paper, a slide show, and an implementation guide.

CDC Vital Signs – Exercise For Adults with Disabilities

Last week, the Centers for Disease Control and Prevention (CDC) released its monthly report, “Vital Signs,” that focused on exercise for adults with disabilities.  The report found that nearly half of the more than 21 million US adults (ages 18–64) with a disability get no aerobic exercise, even though most of them are able to participate in physical activity.  Although adults with disabilities are 82% more likely to be physically active if their doctor recommends it, only 44% of adults with disabilities who visited a doctor in the past year were told by a doctor to be physically active.  The CDC recommends tools for doctors to discuss and recommend physical activity to their adult patients with disabilities, and provides other tools to spread the message as well.


Information from CMS about New Resources on the ACA


Updated Medicaid/CHIP Eligibility Levels for 2014

CMS has updated its Medicaid Moving Forward page on, at, to include the Medicaid and CHIP eligibility levels that are in effect as of April 1, 2014.  These tables will be updated on a quarterly basis going forward.

Home and Community-Based Services – Resources on New Standards

The National DD Network Partners – the Association of University Centers on Disability (AUCD), the National Association of Councils on Developmental Disabilities, and the National Disability Rights Network – have launched a new website to help advocates get involved in their states and improve the implementation of the new Medicaid rule regarding the settings of home and community-based services. The site,, provides links to official CMS resources, national advocacy resources, and information for each state on their HCBS transition/compliance processes.  The website relies on national and local organizations working to help inform each other. To share information from your state, email

Healthcare Preparedness

This CDC website provides resources for public health, healthcare, and emergency management professionals to help them safely deliver appropriate care in the case of a natural disaster or public health emergency.  The Healthcare Preparedness Activity (HPA) within the Division of Strategic National Stockpile works to improve the healthcare delivery system’s ability to respond to potential natural disasters and public health threats, such as pandemic influenza.  HPA provides tools and other resources intended to enhance preparedness from multiple sectors that impact healthcare and public health.

MCH Library -- final versions of the Children and Youth with Special Health Care Needs Knowledge Path and Resource Briefs:

Knowledge Path Family Resource Brief  

School Resource Brief

Measuring Patient Satisfaction: A Bridge Between Patient And Physician Perceptions Of Care

This Health Affairs blog post discusses the differences between the way that patients and doctors view the provision of patient care, and thus the importance of measuring patient satisfaction rates.  The post provides an example involving the differences in perception of the outcome of spinal fusion surgery.


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

“Diverse Leaders Scholarship Program” for Executive Directors of Family-Run Organizations

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.

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


Yours truly,




Janis Guerney, Esq.


Brooke Lehmann, MSW, Esq.


Lynda Honberg