May 2010

May 19, 2010

Health Care Reform: We're Not Done Yet!

Family Voices Policy Team: Janis Guerney and Brooke LehmannThe good news is that Health Care Reform passed-due in no small part to efforts of many of our Friday's Child readers. This is only part of the story, however, as there are still details to be determined and decisions to be made. We all have the opportunity to influence implementation by becoming involved at the state level where many of these discussions and dialogue are taking place. Some of the Decisions Still to be Made

  • Health reform provides states with the flexibility to expand eligibility further or simply increase enrollment in Medicaid and CHIP. States can also elect to phase in adults up to 133% of the federal poverty level prior to 2014 (when it will be required).
  • the number of people who can obtain coverage despite pre-existing conditions while broader health reform is being implemented. States will have the option to set up such a high-risk pool or leave implementation to HHS.
  • Starting on October 1, 2011, health reform creates a new state Medicaid option for states , the Community First Choice Option ( covers community-based attendant services and supports to help Medicaid beneficiaries with daily activities). States that take up this option will receive a 6 percentage point increase in their federal match for costs associated with the program.

How Can You Help?

  1. Get to know your state insurance administrators/regulators. Ask for a meeting and ask them to help you get involved.
  2. Learn more about your state's Medicaid plan. Compare what your state already does with Medicaid with new incentives and options.
  3. Join advocacy coalitions forming in your state.
  4. Prepare for grassroots advocacy. Educate those you know.
  5. Get to know your federal congressional delegation and share your knowledge
  6. Don't be shy. You aren't alone if you have questions and concerns about health reform, but don't let that stop you from getting involved!
    • MCHB funded national centers sharing resources
    • A Ring of Knowledge activity to gather information on best practices
    • Deepening relationships between FV Regions 1 & 2 and regional genetics collaboratives which helped fund the conferences
    • Outreach in Rural Areas
    • Using Targeted Research and Data to Shape Your Message and Materials
    • Building Strong Partnerships between Community Based Organizations and States
    • Reaching Diverse Communities: It's More than Just Speaking the Language
    • Citizenship Documentation: Understanding What's Required and What's Not
    • Big Kids Need Coverage Too: Reaching Adolescents and Teens
    • Enhancing Partnerships: Working with Managed Care Plans
    • Everything You Need to Know in 140 Characters: How Twitter and YouTube Can Enhance Your Outreach Efforts
    • A Healthy Smile for Your Baby
    • A Healthy Smile for Your Young Child
    • Two Healthy Smiles [oral hygiene during pregnancy and after birth]
  7. Check Out These Resources for More Information:

    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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    Family Leadership in the States

    Family Leadership in the News

    Family Voices Brings Leaders Together Across the Country!
    Diana Autin, Family Voices National Field Co-Coordinator and SPAN of NJ Executive Director In April 2010 Family Voices hosted 3 Regional Conferences for family leaders and F2F HICs. Held in Philadelphia, Atlanta and Chicago, conferences provided opportunities for family leaders to network within regions. Conference highlights included:

    Topics included: Family Leadership Development, Policy Advocacy in Action, Using Social Networking Tools, Working with Families during Difficult Economic Times . . .and much more!

    Watch the Family Voices website for materials from these conferences to be posted soon!

    Cassie Johnston - Community Champion!
    Cassie Johnston, Family Voices of Washington Cassie Johnston, from Family Voices of Washington and their F2FHIC, was selected as a Community Champion award winner in the advocacy/civic leader category by Molina Healthcare of Washington. Each year, Molina Healthcare sponsors an awards dinner to honor unsung community heroes in eight different categories - educator, student/youth, health care media, healthcare professional, volunteer, advocacy/civic leader, faith based organization and support group/civic club. Last year's awards dinner was held on October 7, 2009 in Renton, Washington. Award winners received a trophy and a $1000 grant to give to the non-profit organization of their choice. Cassie donated her award to support the WA F2F HIC/parent scholarship. Congratulations to Cassie on her tireless efforts in service to others and her well-deserved award.

    Congratulations to MCH PHLI Family Fellows
    As a partner of the Maternal Child Health Public Health Leadership Institute (MCH PHLI), at The UNC Gillings School of Global Public Health, Family Voices is pleased to announce the following families who will participate in the institute this year: Beverly Baker, ME; Joni Bruce, OK; Janet DesGeorges, CO; Barbara Katz, WI; Sherry Richardson, GA.

    Karen Anzola, National Family Voices TA Coordinator, and Eileen Forlenza, CO Family Voices participate as Family Voices mentees. For more information about the MCH PHLI, please visit

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    What's New with Family Voices

    Join Us! Introducing the All-New Family Voices Membership Campaign
    Have YOU become a member of Family Voices?
    Become an Individual or Organizational Member today and stay connected! Official membership to Family Voices entitles you to discounts, early notification of events, inclusion in a members-only listserv (as of July 1, 2010, recipients of FV-Talk will be limited to those who are current members of Family Voices), and much more!

    To share your membership status with others, individual members will receive a member decal for use on a car, home or office window, and organizational members will receive a certificate suitable for framing.

    Your membership contribution provides information, education, advocacy, and leadership on CYSHCN and disabilities around issues of health care for family and youth leaders across the country. A limited number of reduced-fee memberships for individuals are available.

    Contact us at 888-835-5669 for details or go to to learn more and sign up now!

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

    Check MarkAHRQ Health Literacy Universal Precautions Toolkit
    AHRQ Health Literacy Universal Precautions ToolkitCThe Agency for Healthcare Research and Quality is proud to announce that the Health Literacy Universal Precautions Toolkit is now available. This toolkit was developed to help adult and pediatric primary care practices assess their services for health literacy considerations, raise awareness of the entire staff, and identify areas for improvement. As noted by AHRQ, "research suggests that clear communication practices and removing literacy-related barriers will improve care for all patients, regardless of their level of health literacy." Share this toolkit with your child's provider. Download it at: or access an online version at:

    Check MarkKennedy Foundation Public Policy Guide
    The Joseph P. Kennedy Foundation has created this policy guide to assist individuals with intellectual and developmental disabilities and their families advocating for change with federal, state, and local lawmakers. Visit to access this informative guide.

    Check Mark2010 Rosalynn Carter Scholarship Opportunities
    Mattie J. T. Stepanek Caregiving Scholarship: Four $2500 scholarships will be awarded to "provide financial assistance to family, professional, or paraprofessional caregivers of any age who are seeking training or education in specific skills, procedures, and strategies that lead to more effective care at the same time that they serve to protect the health and well-being of the caregiver." Deadline for application: June 1, 2010.

    Rosalynn Carter Leadership in Caregiving Award: "This award recognizes leadership in implementing innovative partnerships between community agencies and caregiving researchers that bridge the gap between science and practice. These partnerships help move effective caregiver support programs to widespread use in the community more quickly." Deadline for application: July 1, 2010.

    Visit for more information.

    Check MarkDevelopmental Screening in Early Childhood Systems
    A new report summarizing the discussions of a recent summit hosted by AAP's Healthy Child Care America (HCCA)/Child Care and Health Partnership (CCHP) is now available. The focus of the summit was to strategize new ways to reach out to children and families in the community and child care settings to promote high-quality developmental screening in the context of the medical home. Successes and challenges experienced in New Mexico, NorthCarolina and Rhode Island are highlighted in this report, Developmental Screen in Early Childhood Systems, available at:

    Check MarkNational Children's Health Insurance Summit: Strategies for Increasing Enrollment and Retention Presentations
    Presentations and resources from this Health Insurance Summit, held last November, are now available at: The goal of this summit was to share best practices and discuss recruitment and retention tactics to increase enrollment in the Children's Health Insurance Program and Medicaid. Transcripts, audio recordings, and presentation playbacks are available for over 80 plenary and breakout sessions on such topics as :

    Check MarkNew Oral Health Resources
    National Maternal and Child Oral Health Resource Center consumer brochures are now available at:

    Results from a study, Association Between Parents' and Children's Use of Oral Health Services, have been published in the March issue of Pediatrics. Findings explore the relationship between parents' oral health and that of their children, noting that children were more likely to visit the dentist if their parents visited the dentist. To read more visit:

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    Make Your Voice Heard !

    Researcher The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) has extended a special invitation to Family Voices and affiliates to submit nominations to be prioritized in the Institute's 2010-11 BPCA Priority List of Needs in Pediatric Therapeutics. If you have interests or concerns about a specific pediatric condition, subpopulation, or setting of care or a particular drug, biologic, or medical device that requires further study in children, now is the time to make your recommendation known. The NICHD will consider your recommendations in their effort to best target clinical (or pre-clinical) studies sponsored through the Best Pharmaceuticals for Children Act (BPCA) Program. Submit your nominations on or before May 30 at:

    If you are interested in participating in the review and prioritization of nominations, please contact Cynthia Schuster, stating your interest and/or the nominated party.

    From Our National Partners
    From our national partners

    National Center for Cultural Competence

    Cultural and Linguistic Competence Family Organization Assessment
    Cultural and Linguistic Competence Family Organization Assessment ToolOrganizational self-assessment is a necessary, effective, and systematic way to plan for and incorporate cultural and linguistic competency. This new tool was specifically developed to address the unique functions of family organizations concerned with children and youth with behavioral-emotional disorders, special health care needs, and disabilities.

    his tool will allow organizations to identify their strengths and weaknesses, paving the way for improvements to the services and supports they provide.


    New Universal Flu Vaccination Recommendations
    A lesson learned from this year's H1N1 flu season-many people are unaware that they are in the "higher risk" categories and opted not to get flu shots this year. CDC now recommends annual influenza vaccination for all people aged 6 months and older.

    MCH Library at Georgetown University

    Health Insurance and Access to Care for Children and Adolescents
    This latest Knowledge Path provides links to resources on data, effective programs, and policy and research aimed at advancing health coverage and improving access for children and adolescents. See

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    Children's Mental Health Awareness

    May 6 celebrated National Children's Mental Health Awareness Day, to raise awareness of effective programs for children's mental health needs and the importance of initiatives to promote positive youth development, recovery, and resilience. For more information, including the report, Addressing the Mental Health Needs of Young Children and Their Families, visit:

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    Chongratulations to Kathy Bishop

    M Gala dinner was held on March 3 in honor of Kathy Bishop's achievements as the creator of the Master of Social Work Program and retiring Dean at Wheelock College. Tributes from the College President, numerous faculty and students paid tribute to Kathy's vision, dedication and creativity. Nora Wells shared greetings from Merle McPherson, retired MCHB Division Director and current member of the FV BOD, thanking Kathy for her critical role in the creation of MCHB's family-centered, community based programs and her service as a long time FV BOD member and supporter of Family Voices.

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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