May 2012

May 29, 2012

May 29, 2012: Download a Printable Version here.

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Feature Story: Katie Beckett: A Quiet Hero

Family Leadership in the States:

Legislative Corner: Washington Update: Save Our F2Fs!

From Our Partners:

News You Can Use: Resources from F2Fs/SAOs

What's New with Family Voices: National Family Voices Announces Preliminary Plan for Interim Leadership Team

Katie Beckett: A Quiet Hero
Katie BeckettCalled a “quiet hero and an inadvertent pioneer in the civil rights movement for people with disabilities” by Health and Human Services Secretary Kathleen Sebelius, Katie Beckett recently passed away at the age of 34. In her short life, Katie was a remarkable individual who improved the lives of over half a million children by paving the way for children with disabilities to get the care they need at home instead of in the hospital.

Katie’s Story:
At five months of age, a brain infection sent Katie to St. Luke’s Methodist Hospital in Cedar Rapid, Iowa, where she stayed for most of the next three years. While Katie needed to use a ventilator to breathe for much of the day, she didn’t need the level of care and expense that a continued hospital stay cost. When private insurance ran out, Katie’s parents turned to Medi-caid. Her mother, Julie Beckett, successfully advocated for a waiver of the rules that required children with special health care needs to be in the hospital in order to receive needed Medicaid funding. Keeping Katie in the hospital meant the government was paying $10,000 to $12,000 a month — five times what in-home care would cost. Thanks to an historic decision in 1981 by then President Ronald Reagan, Katie went home.

Over the next 30 years, Katie’s mother, Julie, would help to found National Family Voices and to create the first funding for Family-to-Family Health Information Centers (F2F HICs). Katie became an advocate and board member of KASA, Kids As Self Advocates, a Family Voices project dedicated to empowering young people with special health care needs. Katie often spoke at conferences and testified before Congress.

The need for families to be actively involved in the care of technology-dependent children like Katie focused attention on the critical roles that families play in this process. Family/professional partnerships began to blossom. The Beckett’s efforts also ensured that a broad array of fami-lies representing every group in our country would join this movement.

Katie’s impact cannot be understated. Her legacy is the reaffirmation of core values in our society: the power of one person with abilities to make a difference; the strength of the family unit in all cultures; and the shared responsibility we all have in assuring efficient use of government spending. Katie’s story shows the benefits of families as full partners in decision-making.

Thank you, Katie, for being our hero.

Read more tributes to Katie.

Katie Beckett Memorial Fund for KASA On the occasion of Katie Beckett’s Memorial Service, May 24, 2012, National Family Voices announced a Memorial Fund for its KASA program, initiated by an anonymous donor, in honor of Katie’s dedication to KASA. Donations can be made at by clicking on DONATE NOW. Please be sure to direct your gift to KASA in memory of Katie. You may also contact Family Voices at 3701 San Mateo Blvd NE, Suite 103, Albuquerque, NM, 87110.

Family Leadership in the States

Family Leadership in the States

Montana’s Medicaid Wraparound Services for CYSHCN
What determines whether a child with special health care needs is placed in a residential program or cared for at home? For many families, the difference lies in whether they get the support and services they need to care for their child at home. Montana’s F2F HIC and State Affiliate Organization (SAO), Parents, Let’s Unite for Kids (PLUK), has been part of a team of stakeholders who has designed and implemented a Medicaid wraparound services program for children with mental health issues to identify needs and overcome barriers to safely care for these children at home. Noting that often the needs of these families include non-traditional services, such as equipment in the home, transportation, or housing, PLUK staff were trained and certified to create effective wraparound service plans for these children, and to identify services that can be paid for under the Medicaid waiver. Once trained and certified, the F2F HIC staff receive Medicaid reimbursement for the services provided. A family leader with medical billing experience was able to put the needed billing systems in place.

Mitch with a cowAs a consequence of developing a Medicaid billing system, the Medicaid Physical Disabilities Waiver program also approached PLUK to provide services to an individual who could not be served through the traditional provider agencies.

PLUK’s success in this venture is due, in part, to successful partnerships with professionals from Children’s Mental Health, Juvenile Justice and Education and Developmental Disabilities who recognize the strength of this F2F in understanding family needs and efficiently identifying appropriate resources. Professionals also realize that these capacities are different from the approach typically provided by non-family-run agencies.

According to PLUK’s Roger Holt, “A big advantage of the program is that the funding for meeting family needs is flexible and can be used for what will help the family care for the child at home. The project has been so successful that some of our staff have been hired as plan managers for the program. Others have emerged as trainer/coaches who certify wraparound facilitators and caregiver supports and assure quality services are provided.”

The Montana SAO (PLUK) is getting good return for its F2F funding. Not only does this help the state, but—most importantly—it helps families and children with special needs. Roger adds, “Children and families are getting the services needed, plus they are becoming empowered to address issues within the family. The families who participate and the staff who provide services have reported wild success. The result is families need less intensive services and the kids are succeeding. It is a model we have always used to help families, we just didn’t know it. This experience is helping us to formalize the training for staff to assure the quality of services we provide to families.”

Visit PLUK at

The 2012 F2F HICs Grantee Meeting
On April 23-25, staff representing all 51 F2F HICs gathered with the NCFPP, MCHB, and other partners to share information, resources, and best practices. With the sun streaming through the high windows at the Pew Charitable Trust Conference Center in Washington, DC, the energy in the room was palpable. A participant remarked, “We couldn’t share information fast enough!”
Becky Shipp at FV Awards Reception
A celebratory afternoon reception highlighting family/professional partnerships heralded the start of this year’s grantee meeting. Participants were warmly welcomed by Dr. Michael Lu, MD, MS, MPH, Associate Administrator, MCHB, HRSA, and Bonnie Strickland, Ph.D., Director, MCHB Division of Services for Children with Special Health Needs, who provided an overview of the DSCSHCN Strategic Plan. Becky Shipp, a Health Policy Advisor on the Senate Finance Committee, and Diana Denboba, Branch Chief, Integrated Services, MCHB/DSCSHCN, were honored for their commitment to improving the health of CYSHCN and for their key roles in championing the development of and funding for F2F HICs.

As family leadership has grown across the country, so has its impact on systems of care, a common theme throughout the meeting. Sessions exploring the role of families included:

  • ACA implementation in the states
  • The Power of Family Stories
  • Partnerships with FEMA, EMSC and others
  • Parent Navigators in Pediatric Practices
  • Family-Centered Care Tools
  • Care Coordination Measure Development
  • AHRQ and NICHQ Quality Initiatives
  • Family Capacity to do Research

Read more about how the F2F leadership in the states is improving systems of care for CYSHCN across the country in the 2012 Sharing Activities Notebook as well as other materials from the meeting now posted at

Affordable Care Act Funds F2F HICs through May 2013
Health and Human Services (HHS) Secretary Kathleen Sebelius has announced $4.9 million in Affordable Care Act funding to support Family-to-Family Health Information Centers, primarily non-profit organizations run by and for families with children with special health care needs. View the press release and see the award recipients at: Legislative Corner

Legislative Corner

Washington Update: SAVE OUR F2Fs!
The Family Voices Policy Team is asking for your help in keeping Family-to-Family Health Information Centers up and running. Here’s why - and how you can help.

Federal law provides funding for Family-to-Family Health Information Centers (F2Fs) in each of the 50 states plus Washington, DC through May 2013. Without the enactment of additional legislation, federal funding for the F2Fs will be discontinued after that time, meaning that some F2Fs will have to shut their doors and others will have to cut back severely on the services they provide.

As reported last month, Representative Frank Pallone (D-NJ) and Senator Robert Menendez (D-NJ) have introduced legislation (H.R. 4083 and S. 2123) to extend F2F funding through FY 2015 at the current level of $5 million per year for the entire program. So far, the House bill has ten cosponsors, and the Senate bill has seven. To increase the bill’s chances of becoming law, it is helpful to get as many bill cosponsors as possible, from both houses of Congress and both political parties.

Members of Congress must be informed about the invaluable services that F2Fs offer to their constituents whose children have special health care needs. F2F staff, with first-hand experience in caring for children with special health care needs, are exceptionally dedicated, often going above and beyond the call of duty to help other families understand and navigate the complex health care system so their children can get appropriate, quality care which improves health outcomes. And they help families secure assistance in financing that care when necessary.

Congress is responsible for ensuring that taxpayer funds are spent efficiently and effectively. Because of this, it’s important to let Members know that F2Fs do an incredible amount of work with scant federal funding by networking with other organizations, state agencies, and health care providers. The “navigational” expertise of F2Fs will be increasingly important as health care reform is implemented.

It is as true in Congress as anywhere else that a picture is worth a thousand words. And it is up to F2Fs, their partners, and the families and professionals who have received their help to paint a picture for Members of Congress and their staffers – a picture illustrating the cost-effective, dramatic benefits that F2Fs provide to CYSHCN, their families, and the professionals who serve them.

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


From Our National Partners

Complementary and Alternative Medicine Use Among CSHCN The 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN) included a question about whether children with special health care needs used alternative health care or treatment in the last 12 months. This data shows that nationwide, nearly 11% of CSHCN use alternative medicine or treatment, and prevalence of use is higher among CSHCN with more complex health care needs, and is more common among higher income families and among older children. For more information about this data and other information available from the NS-CSHCN, go to: .CATALYST CENTER Medicaid/CHIP Tutorial Webinar Series Continues

The third webinar in the this series, “What are the Pathways to Coverage and Covered Services for Medicaid and CHIP?” is scheduled for Thursday, June 21, from 12:00pm – 1:00pm ET. Webinar slides from the two previous webinars, “What is the Medicaid/CHIP Tutorial and What’s in It for Me?” and “Understanding the Basics: Medicaid and CHIP Programs and Building Partnerships with Stakeholders” are now available. For more information, go to:

News  You Can Use

News You Can Use


Family-to-Family Health Information Centers (F2Fs) and Family Voices State Affiliate Organizations (SAOs) are staffed by dedicated family leaders who use their talents and the federal funding to create a wealth of resources to help the families of children and youth with special health care needs in their states Here are a few of these resources. Some are state-specific; most could be easily adapted for other states—or at least provide inspiration.

  • Delaware Family Voices, Inc., Delaware’s F2F and SAO: Connecting the Dots
    A resource to help individuals with a newly diagnosed disability or special health care need and their family members to find available supports and services, the guide follows the progression of a family’s need in obtaining services: advice on how to begin a search for information, examples of questions to ask, learning about state agencies, and connecting with other organizations. Individual family stories provide real-life examples. Download a copy of this guide at:

  • Family Network on Disabilities, Florida’s F2F and SAO: Health Care Toolkit
    This toolkit helps families of children and young adults with special health care needs to be better prepared for medical visits, providing a family-friendly way for families to keep their children’s and young adults’ health and school information at their fingertips and improves communication between families and health care providers. For more information, contact Marilyn Ruiz,, 727-523-1130.

  • Parents Helping Parents of Wyoming, Inc., Wyoming’s F2F: Packaging Wisdom: A Family-Centered Coordinated Care Notebook, 3rd Edition
    By organizing information about their child with chronic health needs in this notebook, families are able to easily share information about their children with providers and others, particularly at critical moments, such as when a child is hospitalized. Divided into “chunks” of information, the notebook can be filled out as needed. Download the notebook at:

  • Emergency Preparedness Resources: Family Voices of Alabama, Alabama’s F2F: Family Information Kit
    Here’s a low-tech way for families to gather crucial information that would be needed if they were required to evacuate their home in an emergency. A large Ziploc® bag holds a state map, an Emergency Form for Children with Special Needs, and a checklist of other important information to include, such as insurance cards, durable medical equipment used by the child, medications, daily routines, diet restrictions, etc. The kit is intended to be stored in a freezer for easy access or for First Responders to utilize. For more information, contact Susan Colburn,, 334-293-7041.

  • PATH Parent to Parent/Family Voices of Connecticut, Connecticut’s F2F and SAO: File of Life
    This emergency medical information magnetic packet is a double-sided sheet that holds pertinent emergency medical information about a child or youth with special health care needs. For more information, contact Nanfi Lubogo,, 860-759-9599.


What's New with Family Voices

National Family Voices Announces Preliminary Plan for Interim Leadership Team
In January of 2012, Family Voices’ Executive Director Dr. Sophie Arao-Nguyen announced her plan to step down by the end of June, 2012. Family Voices’ Executive Search Committee is currently in the process of finding the right candidate to succeed Sophie. Since the search process is still underway, the Family Voices Board of Directors has asked Sophie to stay on as Interim Executive Director. Sophie is tasked with forming an Interim Leadership Team (ILT) which includes the hiring of two consultants who will assist her in providing executive oversight starting July, 2012. Further information will be provided when it is available.

From Our National Partners

June is 2012 Safety Month

June is 2012 Safety Month - visit

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