December 2009

December 15, 2009

Family-to-Family Health Information Centers: A Lifeline Adrift

With the myriad of issues facing an estimated 8.8 million families of CSHCN, appropriations of funds for Family-to-Family Health Information Centers (F2F HICs) through the Family Opportunity Act (FOA) in 2006 provided a much needed lifeline and acknowledged the demonstrated success of model F2Fs that had begun operating in a few states. The FOA funded the operation of centers in 31 states and the District of Columbia in 2007; added centers in 10 additional states in 2008 and 10 more in 2009, resulting in F2F HICs in every state and DC as of June 2009. A listing of all centers may be found on the Family Voices website

Girl with Life Preserver The supports, assistance, and training that these centers provide to families, and to the professionals that serve those families, are of unquestionable value. Data provided by the 40 F2F HICs funded as of May 2009 indicate that F2FHICs have provided almost 800 thousand families with information, education and/or training. As indicated in follow up calls with families served, 60% reported being better able to partner in decision-making.

Not only is the F2F program a success for families, but it is an economic success for our government. With the very modest funding of $95,000 per year per center, the F2F program is spending, on average, just $4.75 for each family assisted. F2Fs are able to do this by working efficiently within family-led organizations, blending funding from multiple sources to best serve families, and by partnering with many others to maximize impact. A critical component of this success is the strong network of F2Fs, facilitated by the National Center for Family / Professional Partnerships (Family Voices), which promotes the sharing of information, resources, and tools, and supports the mentorship of new F2Fs in such areas as outreach, family support, organizational development, grant management and data reporting.

However, at this critical time, federal funding for the F2Fs is slated to end in May 2010. Family Voices and the F2F HICs have worked diligently over the last several months to keep F2F programs operating in the future and have been successful in having a provision to continue funding for F2Fs inserted into the Senate HCR proposal. Watch closely as the HCR debate unfolds over the next few weeks. We all need to be prepared to help our legislators know the value of this critical lifeline to families.

"PLUK [Montana's Parents, Let's Unite for Kids] was like a lifeline to my family to make sense of what was happening at the neonatal intensive care unit. We were at our most vulnerable and basically in shock. That calm voice helped us get connected to the services we needed to take our baby back home to the ranch. Just knowing we could call made all the difference. Now we help others."
- Parent of preemie newborn with multiple health conditions

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Family Leadership in the States

Family Leadership in the States

heartBuilding Legislative Bridges in South Dakota

We often think of legislators in terms of what they can-or should-do for us. South Dakota Parent Connection, the Family-to-Family Health Information Center (F2F HIC) in SD, has turned that around, and looks instead at how they can help legislators meet constituents' needs. Providing a resource for legislators ensures that they understand issues faced by families and children with special needs and creates a true partnership from which everyone benefits.

South Daktora Parent Connection logo

Lisa Sanderson, South Dakota's F2F HIC Coordinator, described how they contacted all 105 state legislators to build awareness of the F2F. "We are here to help you help your constituents. We're happy to help, and we don't have to be given credit. We can provide a concrete resource for you."

Legislators and their staff serve as ad-hoc members of the F2F Advisory Committee, participating in meetings via conference call. A fruitful exchange of information and concerns happens year-round. "This gives them realtime input on how we help families, and it gives us a heads-up on what is happening in the legislature that concerns our families."

Lisa told of the Representative who called about a family expressing their dissatisfaction with a residential treatment facility and wanting to know what they could do. "We ran down a long list of options, including going to the supervisor, then to licensing people, etc, and provided procedural options on increasing levels of authority."

Engaging legislative participation in the F2F Advisory Committee has also led to the legislators seeking family representatives to participate in health care round tables.

Lisa adds, "Building bridges has opened a lot of doors!"

Visit the South Dakota Parent Connection at

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Lauren AgoratusFamily Voices congratulates Lauren Agoratus who was recently honored by ASAH, a not-for-profit organization of private schools and agencies in New Jersey, with the Humanitarian of the Year Award. This award celebrates Lauren's work on behalf of Family Voices of NJ and the Statewide Parent Advocacy Network (SPAN) of NJ (F2F HIC), among other good works. Diana Autin of SPAN writes, "This (award) shows what an incredibly committed and amazing person Lauren is and how extraordinarily lucky we are to have her!"

Legislative Corner

Legislative Corner

heartHealth Care Reform Update

Progress continues in the congressional debate over health care reform, with some political observers envisioning that the Senate process could wrap up before the holidays. As of now the provision for continued funding of Family-to-Family Health Information Centers (F2F HIC) is intact. Additional developments in health care reform have developed in the last couple of weeks of particular interest to families:

  • The Family Voices Policy Team and partners are working on a demonstration project amendment to create Family-to-Family Health Information Centers in Native American Tribal Nations. Advocates in discussion with Senator Udall (D-CO), have been encouraged that the health care reform bill could expand the success of the F2F program to Native American families of children with special health care needs/disabilities.
  • The Patient Protection and Affordable Care Act (part of health care reform) includes a "patient protection" amendment, filed by Senator Ben Cardin (D-MD). This amendment seeks to improve timely access to specialty services, including access to specialist care coordinators for people with disabilities and chronic conditions; limitations on utilization review for denying coverage; improved access to emergency and ambulance services; access to specialized primary care services, particularly for women and children; and better protection of medical communications.
  • The "Casey Amendment"(part of health care reform), filed by Senator Bob Casey (D-PA) would ensure funding for the Children's Health Insurance Program (CHIP) through 2019 and make it easier for families to enroll in this program.

Some additional resources to help you better understand health care reform include:

  1. What do Children and Youth with Special Health Care Needs Require from Health Reform?, a 4-page brief form the Catalyst Center
  2. Kaiser Family Foundation - publications and side-byside bill comparisons:
  3. Georgetown Center for Children and Families - publications and blog:

If you have any questions about these or other federal issues, please feel free to contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.

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Celebrate the Season of Giving

Looking for a meaningful gift?
Honor a friend, family member, doctor, nurse, paraprofessional, or anyone who has made a difference in your family's life with a donation to Family Voices this holiday season. Your donation, in honor of your special person, will include an email to the honoree recognizing the donation made in his/or name. All donations, large or small, will be used to communicate with more families, reach out to new partners, and provide extended support to the Family Voices network across the country. If you would like to make a tax-deductible donation, visit the Family Voices donation site. Be sure to completely fill out the GIFT INFORMATION section of the form so that we can contact your honoree to let them know of your donation!

From all of us at Family Voices, THANK YOU for contributing your valuable resources to help us improve the lives of the 10.2 million children with special health care needs and disabilities living in 8.8 million families in the United States . Your donation allows Family Voices to help those families in every state have the family-centered care and support that they deserve.

Many blessings to you!

Looking for a gift that someone can use 365 days a year?
Family Voices 2010 Calendar The Family Voices 2010 calendar brings our mission and our hope for family-centered care to life in this beautiful tribute to families of children and youth with special health care needs/disabilities. You'll be sure to enjoy these heart-warming photos of families across the country while noting your daily appointments. Calendars are available for $10.00 each by contacting Rachel Rodriguez, Family Voices Deputy Director, (888) 835-5669

News You Can Use:
Resources and More

Check MarkResources on Bullying
help youth program providers identify peer conflict and bullying and promote positive peer conflict resolution techniques. Assessing Bullying: A Guide for Out-of-School Time Program Practitioners provides information on who is most likely to be a bully or victim, how to know when conflict has turned into bullying, and ways to reduce bullying.

Assessing Peer Conflict and Aggressive Behaviors: A Guide for Out-of-School Time Program Practitioners defines peer conflict, how it differs by age and gender, what factors are associated with youth who engage in aggressive behaviors, and ways to reduce peer conflict. Both resources are may be downloaded at

Check MarkFoster Care
A new website, Healthy Foster Care America, has been launched to engage communities and their leaders in supporting children, teens, and their families with an effective, multidisciplinary, integrated, and comprehensive continuum of care. On this site you can find the latest tools, resources, facts, and figures on the health and well-being of children and teens in foster care.

Check MarkGrassroots Support for Families offers families a way of connecting with other families of children with special health care needs. Through blogging and online chat discussions, Hopeful Parents, invites families to share their feelings, worries, and hopes with other parents who understand.

Check MarkSpina Bifida Study
The Spina Bifida Genetics Research Project is currently conducting research on the genetic factors associated with an increased risk for Spina Bifida. Their hope is that this study results in a better understanding of Spina Bifida so that some day it may be prevented. Mothers of children with Spina Bifida are invited to participate in our study.

Check MarkWebinar: End of Life Through A Cultural Lens
This webinar will explore cultural beliefs and influences that often converge when an individual is faced with end-of-life decisions within the contexts of the legal system, the health care system, community and social networks, spirituality or the faith community, and the family.

Date: December 16, 2009
Time 1:00-2:00 pm
Registration: https:// register/831092208

Sponsored by AAIDD - AUCD - The Arc of the US - ANCOR - AAIDD Gerontology Division - RRTC on Aging & DD at the University of Illinois at Chicago.

From Our National Partners


The American Academy of Pediatrics has launched a new website, full of information to help you help your child, whether a new born or young adult, keep healthy and safe. This website, backed by over 60,000 American Academy of Pediatrics member pediatricians, provides information on numerous medical conditions, fitness, oral health, emotional wellness, family dynamics and more. After completing a simple registration form you can even submit a question to a pediatrician. Check out this great resource at:


MCHB's Title V Information System (TVIS) Web Reports have now been updated with the data provided in the 2010 application/2008 annual report. These reports include state snapshots that provide MCH program descriptions, 2008 performance measure results, 2013 goals, and more.

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