March 2010

March 04, 2010

Family Leaders As Partners

Christy Blakely (Colorado F2F HIC) with  Lorez Meinhold (Colorado Health Foundation), at the 2009 Family Voices ConferenceThere is much evidence of the value of a family-provider partnership in improving care for a CSHCN. Not as well documented is the value of family leaders partnering with policy makers to improve programs for CSHCN. However, if events at the recent NICHQ Jumpstart Quality Improvement Training were taken as evidence, it is clear that family leaders and their professional partners have come a long way in learning how to work together to improve policies and programs for CSHCN. At that meeting, family leaders engaged in dynamic sessions with Title V and other state leaders to explore key improvement concepts in organizational performance.

The success of family leaders as partners may, in part, be due to the growth of Family-to-Family Health Information Centers (F2F HICs). Gradually funded over the last five years, there are now F2F HICs in 50 states and the District of Columbia. One focus of these grants is the development of family leadership, a critical component for successful family / professional partnerships. Data reported by 40 reporting F2F HICs shows how the activities of F2F HICs promote and develop family leadership. On average, each F2F, in a year:

  • Connects with 8,370 people through meetings and trainings
  • Disseminates information 24,629 people through 1-1 contact and broader means (newsletters, listservs, etc.
  • Serves an estimated 36% of families from underserved populations
  • Responds to about 23 requests for assistance/day
  • Collaborates with 14 state-based agencies and 10 community-based organizations

Through these activities, F2F staff have broadened their leadership skills by working with families from all walks of life and professionals from many different backgrounds; staying on top of emerging issues; and building networks of families and professionals. Furthermore, F2F staff know the value of new leadership and outreach to and nurture a new generation family leaders.

As partners, F2F's actively engage other organizations. The chart below shows the percent of F2F HICs involved by type of state organization:

  • Task Forces: 98%
  • MCH/CSHCN: 98%
  • Early Intervention/Head Start: 98%
  • Developmental Disabilities: 95%
  • Medicaid (CMS), SCHIP: 90%
  • Case Managers: 90%
  • Education: 90%
  • Child Care: 75%
  • Genetics/Newborn Screening: 70%
  • Oral Health: 68%
  • Mental/Behavioral Health: 68%
  • EHDI/Newborn Hearing Screening: 65%
  • Foster Care/Adoption Agencies: 65%
  • Private Insurers: 60%
  • LEND Programs: 58%
  • FFCMH: 53%
  • EMS for Children: 48%
  • Juvenile Justice/Judicial System: 43%
  • HUD/housing: 28%
  • NICHQ Learning Collaboratives: 18%

The percent of F2F HICs involved by type of community-based organization is shown below:

  • Other Family Organizations: 100%
  • Non-Profits, (UCP, March of Dimes, etc): 95%
  • Medical Homes, Providers, Clinics: 93%
  • Schools: 85%
  • Interagency Groups: 83%
  • AAP Chapter: 73%
  • Hospitals/staff: 73%
  • Ethnic/Racial Specific Organizations: 68%
  • Faith-based Organizations: 53%
  • Community Teams: 53%
  • Universities - Schools of Public Health: 48%
  • Universities - Schools of Social Work: 48%
  • Community Colleges: 40%
  • Universities - Schools of Nursing: 38%
  • Hospitals - Other: 35%
  • Several of the F2F family leaders at the NICHQ training spoke of the critical importance of groups working together to help families. As Nicole Schomberg (Nevada F2F HIC) noted, "Our Title V Director is always supportive of families, as is the Nevada Health Division Director. They love that we can provide something they can't. They collect the data, but we provide the follow-up for support."

    Finally, F2F family leaders noted that building partnerships takes skill and offered these tips for emerging family leaders:

    • Start with common ground and shared vision
    • Recognize strengths
    • Become a family representative "broker"
    • Train family representatives to know what to expect and what is expected of them
    • Train professionals to know how to optimize the partnership
    • Pitch in and help
    • Seize the opportunity
    • Build over time

    For more information, download the Technical Assistance Bulletin, Family Leader Wisdom: Building Partnerships.

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    Family Leadership in the States

    Family Leadership in the News

    New Mexico Family Advocates Stop Developmental Disability Waiver Cuts-For Now
    Congratulations to Polly Arango and other family advocates who presented a many-faceted campaign to put a stop to a proposed statewide waiver cut for developmental disabilities. Letters, contact with the legal system, op-ed pieces, legislative pressure, etc. added up to at least a delay in the plans to allow for further study of the impact on these cuts.

    Diana Autin: Recipient of 2010 NICHQ Outstanding Family Leader Achievement Award!
    The family leadership efforts of Diana Autin, Executive Co-Director of NJ's Statewide Parent Advocacy Network (SPAN), have been noted and rewarded! This important award will be presented to Diana at the March 8-11 NICHQ Forum for Improving Children's Healthcare and Childhood Obesity Congress. Congratulations also to NJ SPAN and their partners for being the first recipient of the Genetic Alliance Art of Novel Partnership Award!

    Susan Colburn and FamilySusan Colburn: Recipent of 2010 AMCHP Merle McPherson Family Leadership Award!
    Susan Colburn, (Alabama F2F HIC) and mother of three, two with special health care needs, has worked to ensure that the voice of families is heard in her state and the nation and has deservedly earned this recognition! As State Parent Consultant at the Alabama Department of Rehabilitation Services, Susan has increased family involvement in Title V and served as a member and co-chair of the AMCHP Family and Youth Leadership Committee.

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    A Community Partnership for Youth in Maine

    A Youth Sometimes the most fruitful partnership involves the community and, luckily for youth in Maine, Sergeant Jonathan Shapiro of the Maine State Police, knew where to look. In his work, Sgt. Shapiro had often seen the long-lasting, negative consequences of police interventions involving youth in mental health crisis. He knew the seriousness of sending untrained officers into such potentially volatile situations. As a result, Sgt. Shapiro called a community meeting and sought the help of families, judicial representatives, policy, and community organizations to develop better strategies to help youth in crisis. Out of this meeting and through efforts of the F2F at theMaine Parent Federation and the G.E.A.R. Parent Network (Gaining Empowerment Allows Results), a comprehensive project developed with these components:

    • A mental health crisis checklist providing specific steps to help define what a police officer should and should not do.
    • Checklist follow-up: If the family goes into crisis support, this checklist goes with them. Otherwise, the checklist is still kept on file in case there are future incidences.
    • Education for both parents and police: Parents need to understand that police are trying to ensure everybody's protection in a crisis. Police need to understand that parents can provide key information on what has led to the crisis, and what help is needed.
    • Tip booklet for Families and Youth: How to Work Effectively with Maine Police During a Mental Health Crisis, created by G.E.A.R., combing concrete steps for families to take before a mental health crisis occurs, what to do during the crisis, and a separate section for youth to help them be proactive in their own care and crisis resolution. The booklet includes relevant Maine laws describing when parents must be called in, or how to know an arrest is imminent.

    For more information about this project, contact Theresa D'Andrea of the Maine Parent Federation(207) 793-2738). To obtain copies of the project materials contact G.E.A.R.

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    Legislative Corner

    Legislative Corner

    heartHealth Care Reform Update: 02/26/2010

    Since Democrats lost their 60th vote in the Senate -- upon the January special election of Senator Scott Brown (R-MA) -- negotiations over health care reform have been stalled. The health care reform summit recently held by President Obama, however, is likely to rejuvenate the process. Obama released a proposal that would build on the Senate-passed bill (H.R. 3590) by increasing subsidies to make insurance more affordable and making other changes that will bring the Senate bill closer to the House-passed bill (H.R. 3962). At this point, the most likely scenario is that the House would pass the Senate bill, and both chambers would pass a so-called "reconciliation" bill that would reflect compromises struck by the House, Senate and White House.

    Although proposals differ in details and effective dates, they all include provisions to benefit children and youth with special health care needs, and are likely to be a part of any final legislation:

    • Elimination of pre-existing condition exclusions for children
    • Elimination of pre-existing condition exclusions for adults, and prohibition on premium variations based on health status
    • A temporary high-risk insurance pool for individuals unable to get insurance due to pre-existing conditions
    • A requirement to allow dependents to remain on their parents' health insurance plans for a longer period -- through age 26 (House bill); through age 25 (Senate bill and President's proposal)
    • Elimination of lifetime and annual benefit caps
    • Medicaid to cover all individuals in families with incomes under certain thresholds - 150% of the federal poverty level (FPL) in the House bill, and 133% of the FPL in the Senate bill and President's proposal
    • No-cost preventive care and screenings for children - pursuant to the AAP "Bright Futures" recommendations
    • Subsidies to lower-income families for premiums and cost-sharing
    • Limitations on deductibles and co-payments, based on family income
    • Provisions to increase the supply of pediatric subspecialists (e.g., loan forgiveness) (Senate bill)
    • Incentives for more community-based long-term care in Medicaid (Senate bill)
    • Medical home incentives (House bill)

    Also of note, the State Children's Health Insurance Program (CHIP) would be eliminated in 2014 under House bill, but retained in the Senate bill and President's proposal until 2019.

    Family-to-Family Health Information Centers (F2F HICs) Funding for F2F HICs will expire at the end of May 2010 unless legislation is passed to extend it. The Senate bill includes a three year extension (FY 2010 through FY 2012). If, as expected, the Senate bill provides the basis for health care reform and is enacted, it will likely include F2F HIC funding. F2F HIC funding may also be included in any legislation that extends unemployment insurance and other popular programs.

    Maternal and Child Health Block Grant (MCH Block Grant) The President's proposed budget for FY 2011 would provide an increase of $11 million for the MCH Block Grant. While this was a welcome development, Family Voices is supporting the recommendation of the Association for Maternal and Child Health Programs (AMCHP) that the Block Grant be increased by $68 million, to a total of $730 million. It will be up to Congress to determine the final amount in appropriations legislation. If you have questions, please contact the Public Policy Team -- Brooke Lehmann ( and Janis Guerney (

    If you have any questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.For information on how you can get involved, please visit the Family Voices website.

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    What's New with Family Voices

    Join Us! Introducing the All-New Family Voices Membership Campaign
    Watch your postal and email inboxes over the next few weeks for information about the all-new Family Voices Membership program. Join us as an individual or an organization and enjoy the many benefits of membership!

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    News You Can Use:
    Resources and More
    News you can use

    Check MarkGet Involved in Quality!
    CMS and AHRQ recently hosted a meeting to discuss pediatric healthcare quality measures and initiatives within both agencies that will be undertaken in response to the Children's Health Insurance Program Reauthorization Act of 2009 (CHIPRA, PL 111-3). The Initial Core Set of Children's Healthcare Quality Measures for voluntary use by state Medicaid and CHIP programs have been released and public comments submitted. A key aspect of this legislation is the involvement of consumers/families in ensuring quality. The first states have been awarded grants. Find out what your state programs are doing in response to this high profile initiative, and volunteer to get involved.

    Check MarkNew State Data Snapshots Demonstrate Health Disparities
    New reports and state profiles, developed by CAHMI, are now available based on data from the NS-CSHCN that show health disparities, including type of insurance, race/ethnicity and income level.

    Check MarkTopical Calls on Children's Mental Health
    Georgetown University National Technical Assistance Center for Children's Mental Health 2010 has announced 2 upcoming calls in their National Topical Conference Call Series:

    - March 18: "Healthy Children and Families: Reducing Behavioral Health Disparities in Rural and Frontier Areas."

    - April 15: "Family Engagement and Its Impact."

    Time: 1:00-2:30pm Eastern.

    This series combines presentations by experts with open discussion. For more information click here.

    Check MarkMobile Text Pilot Program
    The CDC's new text program sends approximately three health messages per week directly to your cell phone on emerging health-related issues. The service is free (other than your standard text messaging fees). To subscribe, text the word "mcdc" to 87000 from your mobile device. The CDC would like feedback on this program.

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    From Our National Partners
    From our national partners

    AMCH Library at Georgetown University

    Two new Knowledge Paths are now available from the MCH Library at Georgetown University

    - Oral Health

    - Physical Activity and Children and Adolescents

    Visit these sites to find current resources, websites, public health campaign information, and a wealth of other helpful information.

    National Center for Birth Defects and Developmental Disabilities

    Topical Call #13: Community Supports for Transition
    The NCBDDD has a new fact sheet available in both English and Spanish: "10 Things You Need to Know about Birth Defects."

    Healthy and Ready to Work

    The HRTW team, led by Patti Hackett, have been quite busy, presenting at three November 2009 events in Washington, DC, Houston, TX, and Concord, NH on youth involvement and transition issues. Visit the HRTW website to view the PowerPoint presentations.

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    March is National Nutrition Month
    March is National Nutrition Month

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    Thank you for your interest in Friday's Child.  Should you have any questions about this newsletter, please email Peggy Curran