May 2014

May 30, 2014

May, 2014: Download a Printable Version here.

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Feature Story: Champions for CYSHCN

Public Policy Update: The Affordable Care Act – Past, Present, and Future

Family Leadership in the States: FV of MN: Parent to Parent Peer Support in Medical Homes

From Our Partners:

News You Can Use

What's New with Family Voices:

Champions for CYSHCN
arc with patriotic heart Twenty-two years ago, Family Voices identified goals to improve healthcare for children and youth with special health care needs (CYSHCN): national health reform, adequate financing programs, and the establishment of family-led organizations to assist other families.

Today, Family Voices has seen significant progress on these goals. The Affordable Care Act provides reform in key areas for families, Medicaid and CHIP have become strong programs for CYSHCN, and Family-to-Family Health Information Centers (F2F) are currently funded in every state and the District of Columbia.

These accomplishments would not have been realized without leaders in Congress who championed the rights of families of CYSHCN. From our heart, we thank them:

U.S. Senator Tom Harkin, Iowa
Senator Harkin has been one of the most outspoken and consistent advocates for people with disabilities beginning with his signature legislative achievement, the Americans with Disabilities Act (ADA). Since the passage of the ADA, Senator Harkin has continued to advance the rights of people with disabilities, and in particular, serve as a champion of the F2F Program. He has ensured that individuals with disabilities and their families receive the care, attention and assistance that they need through federal programs and policies.

U.S. Senator Robert Menendez, New Jersey
Senator Menendez currently chairs the Senate’s Foreign Relations Committee and serves on the Senate Committee on Finance where he has advocated on behalf of families of CYSHCN. As a member of the Finance Committee, Senator Menendez has served as a champion of the F2F program, sponsoring several bills to extend funding for the program and working tirelessly to ensure that his colleagues on the committee support his efforts.

U.S. Senator Ron Wyden, Oregon
Senator Wyden is Chairman of the Senate Committee on Finance, which has jurisdiction over Medicaid, the Maternal and Child Health Block Grant, and the F2F program. Senator Wyden has been a steadfast champion of vulnerable populations and spent a better part of his private-sector career advocating for the well-being of the elderly and disenfranchised. He has been instrumental in supporting the continuation of the F2F program by including an extension of its funding in the Medicare physician-payment law.

U.S. Representative Frank Pallone, Jr., New Jersey
Representative Pallone is a senior member on the House Energy and Commerce Committee and serves as the top Democrat on the Committee’s Subcommittee on Health. Representative Pallone played a leading role in passing the Affordable Care Act which included a provision to extend funding for the F2F program. He continues to pledge his support for the program and the families it serves.

U.S. Representative Henry Waxman, California
Under Congressman Waxman’s leadership, Medicaid’s Early and Periodic Screening, Diagnosis and Treatment (EPSDT) program was strengthened so that all medically necessary treatment would be covered in every state, thus greatly improving access to services for CYSHCN. Recently, he was a key player in getting the 18-month extension of F2F funding through the Bipartisan Budget Act and the Medicare physician-payment bill.

U.S. Senator Orrin Hatch, Utah
As a lifelong advocate for CSHCN, Senator Hatch was instrumental in helping to create and extend the F2F program. He continues to use his position in the US Senate as a platform from which to protect and advance the rights of CSHCN, foster children and others in the child welfare system.

Family Voices hosted a tribute to these six individuals on May 19, 2014 at the Rayburn Office Building, Room B340, Washington, DC. More information about the Family Voices’ Legislative Champions will available in a future Friday’s Child Special Edition.

Public Policy Update


Legislative Corner


Public Policy Update: The Affordable Care Act – Past, Present, and Future
Past: In recent months with the focus on the number of people signing up for health insurance through the Exchanges, it has been easy to forget that the ACA ushered in significant changes since it was signed into law four years ago. In 2010, 26 provisions of the law went into effect, many being significant for families of CYSHCN: the elimination of lifetime dollar limits on coverage and restrictions on annual dollar limits; prohibition on rescinding coverage; prohibition of denials or limitations due to pre-existing conditions; coverage for young adults on their parents’ plan; coverage for individuals under 133 percent of the Federal Poverty Level; and prohibitions on states imposing restrictions on Medicaid and CHIP policies until 2019 for children.

Present: In 2014 the “individual mandate” of the ACA was implemented, resulting in 8 million people enrolling in private health insurance plans through Exchanges, 5 million people enrolling in other plans that meet ACA standards, and 3 million young adults gaining coverage through their parents' plans. Increases were also seen in Medicaid and CHIP enrollment. Other important ACA provisions went into effect this year as well, including the elimination of annual dollar limits on coverage, the requirement that plans cover “Essential Health Benefits,” and limitations on out-of-pocket spending. As a result, it is estimated that 12 million more nonelderly people will have health insurance in 2014 than would have had it in the absence of the ACA.

Future: It is expected that more currently uninsured individuals will obtain coverage in the future due to three reasons: more people will learn and take advantage of subsidies; penalties for not having insurance will increase; and Medicaid will potentially be expanded in states.

While issues of healthcare disparities and lack of widespread family-centered care require continued diligence, families of CYSHCN have much to be grateful for with this most significant government expansion and regulatory overhaul of the U.S. healthcare system since the passage of Medicare and Medicaid in 1965.

Contact Brooke Lehmann ( or Janis Guerney ( if you have any questions.


Family Leadership in the States


Family Leadership in the States


Family Voices of Minnesota, Parent to Parent Peer Support in Medical Homes
Staff of Family Voices of MNOver the past three years, many families of CYSHCN and providers have benefitted from the Family Voices of Minnesota (FV of MN) project, Parent to Parent Peer Support in Medical Homes. Funded by a D70 grant, FV of MN peer support program has worked to build upon the American Academy of Pediatrics Bright Futures recommendations to make peer support part of comprehensive care for families of children and youth with special health care needs. Family Voices has built a network of Parent Support Navigators that work with medical home pediatric practices in rural and urban-based pediatric clinics across MN to provide families with outreach, resources, support and information to better access services. Navigators also work closely with providers to help them understand families’ needs and the value of peer support as part of comprehensive care.

Participating providers and families attest to the project’s success. Families, who previously felt incredibly anxious, alone, and at a loss of what to do, indicate they now have a better understanding of services and that they value the support of someone who understands what they are going through. Providers report that this program fills a very specific need for their patients’ families that they cannot provide. They also report that they are learning what resources are important and useful for families. They see first-hand the value of peer support and note that families who have received support from one of the Family Voices Support Parents or Navigators are better prepared for clinic visits. Navigators support and learn from one another during twice monthly networking calls. The work of the Parent Support Navigators is enhanced by over 90 volunteer support parents who are matched to families with specific needs. Navigators and Volunteer Support Parents receive ongoing training.

Carolyn Allshouse, Executive Director, Family Voices of MN identifies two factors that have contributed to the success of the Peer Support in Medical Homes project:

  • Community-based family support: Understanding the culture of families within a community and having knowledge of specific community supports are key to connecting with families. The Parent Support Navigators include an African-American, a Hmong, and a Spanish-speaking parent, and four Parent Support Navigators located in greater MN.
  • Partnerships: Having long-term relationships with other community organizations along with primary care and specialty care clinic staff and investing in new relationships helps bridge the needs of families and providers.

Family Voices of Minnesota is a Family Voices State Affiliate Organization. Tp learn more about FV of MN visit their website.

From Our National Partners

AHRQ: Report on Peer Support
AHRQ Report on Peer SupportIn February, 2014, AHRQ released early results of a CHIPRA Quality Demonstration Grant Program examining on how four States—Maryland, Georgia, Utah, and Idaho—are working to expand access to peer support for caregivers of CSHCN. Noting that more study is needed, they highlighted lessons learned in these states:

  • Carefully defining roles and responsibilities of peer supporters
  • Seeking input from caregivers, family advocacy groups, and providers to develop a peer support program
  • Recruiting and selecting peer supporters who have cared for a CYSHCN
  • Giving peer supporters ongoing training and resources
  • Developing a support system for peer supporters
  • Using a certification process through which peer supporters for Medicaid reimbursement
  • Exploring options for formal, sustainable reimbursement—such as State Plan Amendments and waivers
  • Addressing concerns expressed by health care providers and other organizations when integrating peer support into their care models

AMCHP & Lucile Packard Foundation: Developing Standards for Systems of Care Serving CYSHCN
This white paper outlines in detail the structures and processes needed for a high-quality, coordinated system of care for children with special health care needs. The report is unique in that it represents the consensus of a consortium of public and private organizations, and is the first-ever national, collective effort to detail the components of a high quality system. Download this report at

News  You Can Use

News You Can Use

Shared Plan of Care for CSHCN
This plan of care includes the information necessary to assure that issues affecting a child’s health and health care are identified, and that activities and accountability for addressing them are documented. The best strategies, care structures, processes and outcomes result when patients, families and health care providers form trusting, caring partnerships and draw upon one another’s perspectives and expertise. This report, and its accompanying implementation guide, recommend core content of a comprehensive and integrated plan, and outline the steps necessary to achieve it.

Telling Family Stories
Family stories are a powerful advocacy tool. F2Fs and SAOs recently shared resources to help each other help families to tell their story:

What's New with Family Voices

Polly Arango Mentoring Initiative
Polly Arango Mentoring Initiative


Family Voices is pleased to announce this new initiative honoring Polly Arango, a founder of Family Voices. This initiative seeks to support Family Voices State Affiliates in preparing families from diverse cultural and linguistic backgrounds to join a new generation of family leaders that reflects the growing diverse populations within states and our nation, while building the leadership and advocacy of Family Voices’ State Affiliate Organizations (SAOs) at the state level. There are two funding opportunities for State Affiliates in Good Standing:

  • 3-4 SAOs that wish to conduct Family Leadership & Mentoring for Families of Cultural & Linguistic Diversity will be selected based on an application process. Up to $5,000 per state.
  • 3-4 coaches from SAOs that wish to serve as coaches/mentors for the states selected to conduct Family Leadership & Mentoring for Families of Cultural & Linguistic Diversity. $1,000 per state mentored.

Projects are one year. Applications Due: July 1, 2014. Selection by August 1, 2014. Funding Begins: September 1, 2014.


One in Five Campaign
One in Five Campaign

Did you know that one in five families with children has at least one child with special health care needs? The health care needs of these children may be physical, developmental, behavioral or emotional and represent a wide range of conditions including autism, cerebral palsy, developmental delay, intellectual disabilities, depression, learning disabilities, and epilepsy. Children with SHCN often have more than one condition and functional difficulties in more than one area that impacts their daily lives. Their families typically experience greater stress, struggling to meet the needs of their child in a maze of multiple and complex systems of care and find that insurance is not adequate, care coordination is ineffective, and referrals are difficult. Families of children with SHCN are less likely to have family-centered health care.

Family Voices makes a difference! Through our national office and 43 state affiliates, we directly impact the lives of children and youth with special health care needs and their families. We provide information, training, and support to thousands of families and professionals throughout the country about current issues in health care. We give families tools and information to make informed decisions about their children’s health care. We offer 1:1 family support, peer mentoring, and leadership development. We work at the federal level with Congress and others to ensure important programs are funded and that health policy is family-centered.

Join the Family Voices National Membership & Public Awareness Campaign & Make a Difference! Membership costs range from $15 (students) to organizational memberships based on budget size. Memberships for youth with disabilities under age 24 are free. Get the Word Out! Order and wear buttons at public events, information fairs, membership meetings, trainings and in your community. Tell others about the One in Five families.


Resources from Family Voices

  • Bright Futures Pocket Guide—SPANISH
    This popular resource on child development is now available in Spanish. Visit the Family Voices IMPACT project website to learn more. The pocket guide is free but shipping charges may apply.
  • Family-Centered Care Assessment
    This new 24-question tool is now available and can be used in a provider setting to learn more about a family’s perception of the family-centeredness of their child’s care. This tool has been documented to have high reliability and evidence of empirical validity. It expands areas of quality measurement to important new content areas in decision-making interactions, family support, community services, and cultural competence. Family Voices is partnering with the AAP to test the FCCA in pediatric practices.
  • ACA Tip Sheets
    Family Voices has developed several tip sheets about the ACA for families of CYSHCN and those individuals who assist them:
    • What can Families do now that Enrollment is over but Their Circumstances Have Changed?
    • How Immigrant Status Affects Eligibility for Health Plans in the Marketplace
    • How will the Affordable Care Act Affect Access to Mental Health Services for Children?
    • Accessing Therapies under the Affordable Care Act

 Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit Should you have any questions about this newsletter, please email Peggy Curran