February 2012

February 12, 2012

February, 2012: Download a Printable Version here.

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Feature Story: Keeping Families at the Center of Health Care

Family Leadership in the States:

Legislative Corner: Washington Update

News from Family Voices:

From Our Partners:

News You Can Use:

Keeping Families at the Center of Health Care!

This election year we are engaged in the important democratic process of electing our national leaders. It is our utmost responsibility as we proceed to November to focus our country's leaders on the plight of the American family, the building block of our communities and nation, and particularly on the children/youth of those families with special health care needs, who are among the most vulnerable populations in our country.

Comparison of data from the recently released 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN) with the previous 2005/06 NS-CSHCN* points out some alarming trends: Mother and young daughter

  • An increase in the number of CSHCN, ages 0-17, from 10.2 million children to 11.2 million,
  • An increase in the number of households with at least one CSHCN from 21.8% to 23%, and
  • An increase in the number of CSHCN whose health conditions consistently and often greatly affect their daily activities from 24% to 27.1%.

Additional analysis will be needed to determine what has led or contributed to this vulnerability for America’s children.

What we do know is that quality health care, built on family-centered care, medical homes, and family/professional partnerships is needed now more than ever. Families belong at the center of these initiatives.

We must educate our country’s leaders about the critical need for Family-to-Family Health Information Centers to assist individual families and to help in the design and implementation of quality initiatives. Our country’s leaders must value the unique contributions that family organizations like Family Voices and its State Affiliate Organizations make to developing and supporting family leadership.

As we look forward to November and beyond, Family Voices will be implementing new strategic directions (see Family Voices in the News) to keep families at the center of health care, and we eagerly anticipate new opportunities to work together with you to improve health care for our nation’s children.

* NS-CSHCN 2009/10, data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved 01/29/2012 from www.childhealthdata.org.

View a recent webinar on 2009/10 findings at http://mchb.hrsa.gov/mchirc/dataspeak/events/2012/0119/archive.htm.


Family Leadership in the States

Family Leadership in the States


Alaska’s Parent Navigators Walk Alongside Parents
Twenty years ago, a small group of parents who were tired of having to go outside the state to find the services for their children with special health care needs created the Stone Soup Group, which is now Alaska’s Family Voices State Affiliate Organization and F2F HIC. These parents worked with state agencies and healthcare providers to bring a neurodevelopmental pediatrician to the state. As they worked together, providers and parents alike reached the conclusion that parents are an invaluable source of help for other parents going through similar circumstances.

Alaska's Parent NavigatorsThe cornerstone of Stone Soup Group is its Parent Navigation Services. Parent Navigators (PNs)—parents and family members of children with special health care needs and/or disabilities—guide other families through the service systems in Alaska, helping them find needed services and greatly lessening their workload during already stressful times. They act as a liaison between clinics and families to help develop the child’s medical home—including providing training for health care providers to help them understand what a medical home is and why it is so important. Stone Soup Group Family Support Program Manager Amy Westfall explains, “Some providers think of the medical home as a place to go. We help them understand it is a concept, not an institution. It takes a lot of teaching!”

Each of the eleven PNs live in the communities they serve and know the system and services. They relate to families with a special empathy that comes from having “been there and done that,” often speaking in the native language of the community. Amy says it is more than just advocacy. PNs guide parents through the journey by providing a listening ear and information about available services; this support helps parents to develop the confidence to make their own decisions.

“Stone Soup’s efforts are appreciated. Families say they are able to breathe easier, and think more clearly just because someone who cares is sitting next to them for doctor visits and evaluations. The PNs don’t have to say anything—they just offer support. “We hear that our PN approach offers many benefits —it helps parents refocus, calm down, focus on the now, and get out of crisis mode,” Amy added. “It’s all about listening to families and making sure we’re doing what they need."

For more information about the work of the Stone Soup Group, go to: www.stonesoupgroup.org.

Legislative Corner

Legislative Corner

Washington Update
As most of you are well aware, federal funding for grants to F2Fs is available only through Federal Fiscal Year 2012. Without this grant funding, many F2Fs will not be able to provide the vital services now furnished to families of CYSHCN.

Extending F2F funding beyond FY 2012 will require an amendment to current law. Fortunately, Representative Frank Pallone (D-NJ) and Senator Robert Menendez (D-NJ) plan to introduce identical House and Senate bills to make this change. Their legislation would amend the expiration date of federal funding from FY 2012 to FY 2015. Due to the current political environment, they do not think that an increase in funding or any other changes to the law are feasible, so, under their bill, funding for the program would remain at $5 million per year.

2010-2011 F2F Data 1-pagerTo actually get the F2F bill enacted into law, it will almost certainly need to be attached to a larger piece of legislation. It is hoped that it will be incorporated into a bill currently under House-Senate negotiation – the bill to extend the payroll-tax holiday and to adjust Medicare physician payments, among other things. That bill is expected to be finished by the end of February.

Senator Menendez and Rep. Pallone are in the process of trying to secure cosponsors for their bills before the legislation is introduced. It is their hope that the bills will be supported on a bipartisan basis.

All the readers of Friday’s Child know how valuable the services of F2Fs are to CYSHCN and their families. And, remarkably, the priceless support, assistance, and information that families receive are all provided on shoestring budgets. But most Members of Congress are not aware of this important work to help their constituents, and how well scarce federal dollars are being spent in the support of F2Fs. If your F2F is not already sending newsletters to your state’s congressional delegation, and offering assistance to the caseworkers in their offices, open the lines of communication to educate lawmakers about the exceptional value of F2Fs.

Contact Brooke Lehmann (Blehmann@familyvoices.org) or Janis Guerney (Jguerney@familyvoices.org) if you have any questions.


News from Family Voices


Thank You & Good Luck, Sophie!
With sadness, the Family Voices Board of Directors has announced the resignation/semi-retirement of Executive Director Sophie Arao-Nguyen, Ph. D., effective June 29, 2012. Sophie has dedicated the last five Strategic Planyears to stabilizing, sustaining, and moving Family Voices forward in many ways, including: strengthening our national and regional infrastructure, developing new partnerships; championing cultural competence within and outside of the organization; and ensuring continued funding for F2F HICs, the NCFPP, and FV IMPACT. Thank you and good luck, Sophie.

Family Voices Strategic Plan
With funds from Lucile Packard Foundation for Children's Health, the Family Voices Board of Directors launched a Strategic Planning process in 2011 to chart the course for 2012-2015.  After gathering information from staff, consultants, FV State Affiliates, and partners, five main strategic domains were identified for the next three years at Family Voices—Access and Quality Care, Infrastructure, Development, Cultural Competence, and Public Policy.

IMPACT Project: Family Updates on Bright Future Themes
One-page family updates on the themes chosen by the F2Fs have been created and will be used in ongoing focus groups to solicit ideas and information for new family-friendly materials. Download these one-pagers at: www.brightfuturesforfamilies.org/materials.shtml.


Bright Futures Family Pocket GuideBright Futures Family Pocket Guide: Raising Healthy Infants, Children, and Adolescents!
Developed for families by families, in partnership with the AAP and other professionals, this convenient, attractive resource is based on the AAP’s Bright Futures: Guidelines for the Health Supervision of Infants, Children, and Adolescents (3rd ed.). For more information, contact: bfpocketguide@familyvoices.org. The guide will be available to order on the Family Voices website in the spring.



KASA 2012 Show Your Pride Contest
Kids As Self Advocates, KASA, is hosting its 2012 Show Your Pride Contest and is seeking poetry and visual artwork from youth with disabilities ages 12-24 that display disability pride. Awards are 1st Place: $100; 2nd Place: $50; 3rd Place: $25. Deadline is February 29, 2012. For more information, e-mail KASA at info@fvkasa.org with “Show Your Pride” in the subject line.


From Our National Partners


MCHB: Act Early Ambassadors Appointed
The Centers for Disease Control and Prevention (CDC)/National Center on Birth Defects and Developmental Disabilities (NCBDDD), the Association of University Centers on Disabilities (AUCD), and the Health Resources and Services Administration (HRSA)-Maternal and Child Health Bureau (MCHB) recently announced ten state-level Act Early Ambassadors. The Ambassadors will:

  • Promote the “Learn the Signs. Act Early” campaign to improve early identification of autism and other developmental disabilities
  • Promote the “Autism Case Training:  A Developmental Behavioral Pediatrics Curriculum”
  • Serve as a liaison with Act Early teams.


National Alliance on Mental Illness (NAMI): New Family Guide on Integrated Care
Integrating Mental Health and Pediatric Primary Care provides practical information for families on incorporating mental health care into primary care settings and vice versa.
href="http://www.nami.org/primarycare" target="_blank">www.nami.org/primarycare

National Technical Assistance Center for Children's Mental Health: Monthly Webinar Series

  • 2/16: Creating Trauma-Informed Child Serving Systems
  • 3/15: Linking Primary Care and Systems of Care: Innovation at the State and Community Levels to Support the Social and Emotional Well Being of All Children
  • 4/19: What's Advocacy, What's Lobbying, and What's Plain Old Educating Our Policymakers?
  • All webinars are FREE.

    News  You Can Use

    News You Can Use

    Culturally Diverse Health and Wellness Videos from the Utah Department of Health
    “For Me, for Us”—a series of videos promoting healthy weight, access to health care, and healthy births—are available in multiple languages (English, Spanish, Tongan, Samoan), and are culture-specific. You’ll find versions for African Americans, Hispanics/Latinos, and Pacific Islanders. To watch these videos created in partnership with local community-based organizations, go to:

    Spina Bifida Association Interactive Website
    This interactive website provides parents, young adults, and health care providers age-specific suggestions to help children with spina bifida enjoy lifelong quality of living. Answers to questions about the child’s abilities help tailor tips and resources to the needs of the child.

    Two New Resources from the U.S. Department of Health and Human Services
    - Vaccines.gov now available in Spanish: http://es.vaccines.gov/
    - Check out this new monthly e-newsletter, Adolescent Health Insider, that promotes health and disease prevention through positive development messages combined with risk reduction information: www.hhs.gov/ash/oah

    TSA Cares Hotline
    The Transportation Security Administration (TSA) has a new toll-free hotline, 855-787-2227, to provide information for passengers with disabilities and medical conditions and their families before they fly. 

    Using Technology to Communicate with your Developmentally Disabled Child Webinar
    The National Center for Project Access of the Epilepsy Foundation is presenting this webinar on Tuesday, February 14th, from 2-3pm EST. This is Part 2 of the series. You can hear Part 1 by clicking here:  http://connect.epilepsyfoundation.org/p32641212/.  To register for Part 2, go to:

    This program for pregnant women and new mothers provides free text messages by phone on health tips for pregnancy and for caring for a baby up to 1 year old.  Messages are timed so they match the woman’s stage of pregnancy or the baby’s age. 

    Transitions Checklist
    This checklist, in English and Spanish, helps a youth and family assess and discuss their readiness for transition to adult health care.  Originally developed by HRTW Center, it is now part of the new National Health Care Transition Center toolkit. 

    Online Medication Tool
    This free, secure  online tool assists individuals and families with medication reminders and schedules.  This tool can be used to print wallet-size schedules to share with providers.



    February is National Children's Dental Health Month


    February is National Children's Dental Health Month


     Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit http://www.familyvoices.org/action/keep_informed. Should you have any questions about this newsletter, please email Peggy Curran