December 2011

December 13, 2011

December, 2011: Download a Printable Version here.

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Feature Story: A Season of Giving, A Year of Giving

Family Leadership in the States:

Legislative Corner: Washington Update

News from Family Voices:

From Our Partners:

News You Can Use:

A Season of Giving, A Year of Giving Christmas tree showing people linked by hearts

Family-to-Family Health Information Centers (F2F HICs) provide invaluable support and assistance to families of children and youth with special health care needs (CYSHCN).  We frequently hear how particularly helpful it is for a family to work with F2F HIC staff who are  family members themselves with experience caring for a CYSHCN,  extensive knowledge of financing and community-based services, and a passion for helping other families. Families seeking such help contacted F2F HICs across the country from June 2010 through May 2011 with over 173 thousand requests for assistance.  Areas of assistance most frequently provided were around: family support (family-to-family, peer-to-peer, or sibling support), communicating with a child’s providers, public health care financing programs, health care related services in school, cultural competence, and care coordination.  In this season of giving, we pay tribute to the critical help that F2F HICs provide to families by highlighting brief examples from a year of giving from F2F HICs to families:

Louisiana:  When a grandmother raising her two grandchildren, one of whom is severely disabled with cerebral palsy, became homeless due to flooding, Bayou Land Families Helping Families (BLFHF), the LA F2F, was there to help – first to navigate the Medicaid service coordination system in order to request emergency assistance from state agencies and also to connect them  to other resources in the community to obtain food, clothing, school supplies, household goods, and cleaning supplies.  BLFHF was even able to help the family obtain a wheelchair accessible van so that she could take her granddaughter to medical appointments in New Orleans.   This grandmother expressed her gratitude to BLFHF:  "I don't know what I would have done if I hadn't met you all."

Massachusetts:  Families and professionals who have contacted Massachusetts Family Voices at the Federation for Children with Special Needs report they are very pleased to have a place where they can obtain such reliable information about the state's Medicaid  program, eligibility, application process, and any associated costs. As one family shared, "We got Commonwealth Health ( a Medicaid program to help CYSHCN)! I can't even begin to thank you for helping us navigate this tricky process! You have truly been one of the angels who have helped us along this crazy path we began to travel after having our son. You are amazing and we appreciate the service you offer families like ours." 

Minnesota:  The F2F HIC at the PACER Center reported this feedback from a family:  “We did go for a hearing with the Human Services Judge and, because of learning the system and understanding the eligibility requirements, I was able to successfully argue our case. She (the Judge) overturned the denial and we now receive TEFRA…! It was a scary process, being alone with a Judge and having to prove to a panel of doctors that they made a bad decision. I constantly think of others who do not have experience navigating the system and am very grateful to have learned about the F2F HIC. I could not have done it without you!"  

Family Leadership in the States

Family Leadership in the States

West Virginia F2F logo


West Virginia’s F2F:  Improving Access to Services through a Home Visiting Program
Through the collaborative efforts between the West Virginia F2F HIC, housed at WV Parent Training Information, Inc (WV PTI) and the state Title V CSHCN program, families of children with special needs in West Virginia are benefiting from a new home visiting program.
As part of a recent redesign of the Title V CSHCN Program, newly identified families of CYSHCN receive an initial home visit by a nurse, social worker, and either an F2F member or one of five regional Parent Network Specialists. New families receive a comprehensive level of needs assessment (LONA) after eligibility for Title V services is determined. The LONA helps to identify services and supports the child needs and any other programs or services that might be available and helpful, such as clinics, nutritional evaluations and support, additional Medicaid services, medical foods, Tricare, etc. In addition to medical assessments and the social evaluation, the team and family also discuss appropriate school, transition, and vocational issues.

This new approach has been designed to enhance the Title V program, ensure federal guideline compliance, improve care coordination, incorporate aspects of the Medical Home model, and most of all, provide better services to families. “As a team, we all want to make sure that every child who is eligible for Title V services or any related assistance is receiving the best services available to them,” said Todd Rundle, Program Manager for Family Services for the West Virginia University Center for Excellence in Disabilities (WVU CED), a component of the F2F.

As a result of the home visit, the family (working hand in hand with the team) develops a care coordination plan for their child that outlines who is responsible for which goals and what referrals are needed. The team follows through with continued contact with the family to monitor progress.  Future plans for the home visiting program include annual assessments of all children receiving Title V services.

“It’s a time-consuming process,” notes Todd, “and one that involves a lot of travel and extra time for team members. The outcome of improved services, however, is worth the effort.“

Not surprisingly, this collaborative redesign effort is the result of years of relationship building among the partners. F2F project staff at WV PTI and WVU CED have participated in quarterly retreats organized by the Title V CSHCN program this past year along with participation from families and family members of children receiving services. Todd adds, “We get along well, and work hard together. We spend a lot of time in collaborative meetings on how to make things better for families. We bring the parent perspective to the table.”

More Highlights: Family Leadership in the States

  • Congratulations to Liz Healey, Executive Director of the PEAL Center who received a Parent Advocate award at the recent 35th Anniversary meeting of the Education Law Center of PA.
  • Congratulations to Josie Badger, PEAL Center Youth Coordinator for the State Implementation Grant, who was recently crowned “Ms Wheelchair America 2011” in recognition of her work to develop empowerment and leadership of youth with disabilities.
  • Congratulations to the following organizations that have been awarded funding from HHS to expand innovative, evidence-based practices for improving systems of care for CYSHCN:
    Family Voices of Minnesota for the Peer Support Medical Home Project;
    PACER (MN) for Parents as Teachers Pediatric Resident Training Program;
    SPAN (NJ) for Improving Services to Immigrant Families of CYSCHN.

Legislative Corner

Legislative Corner

Washington Update
Super Committee
:  As readers no doubt have heard, the congressional “Super Committee” –
12 Senators and Representatives charged with finding over a trillion dollars in deficit reduction – reached its deadline last week without reaching any agreement on a proposal.  As a result, automatic across-the-board cuts will be made in many government programs in January 2013, pursuant to the Budget Control Act (BCA), a.k.a. the debt limit deal.  Fortunately, Medicaid, SSI, and CHIP are exempted from this “sequestration,” along with food stamps and welfare payments, among others. 

Unfortunately, the Title V Maternal and Child Health Block Grant program is among the many programs subject to the 2013 cuts, which will be about 8 or 9 percent for “domestic discretionary” programs – non-defense programs for which Congress appropriates money each year (as opposed to “entitlement programs,” like Medicaid, for which spending is determined by the number of people eligible).  Cuts would also affect programs in public health, medical research, and HIV/AIDS treatment, to name a few.  See  Some lawmakers are proposing changes to the BCA so that the automatic cuts do not take effect in 2013, at least for defense programs.  

After 2013, the BCA requires that caps be put on discretionary spending annually until 2021, meaning that Congress will determine which programs to cut each year.  For more detail, see

Clarissa Malley and others at Medicaid BriefingMedicaid Briefing and Report:  On November 29, Family Voices and about 40 other children’s health groups jointly sponsored well-attended briefings about Medicaid for congressional staff and others.  Among the briefing panelists were members of the Family Voices community (and clear stars of the show) – Dianne Malley, who works at NJ’s Statewide Parent Advocacy Network (the state’s F2F), and her 15-year old daughter Carissa, who has Down syndrome and pulmonary hypertension, among other health conditions. 

At the briefing, the Georgetown Center for Children and Families released a report showing that, thanks to Medicaid and CHIP,  the number of uninsured children has decreased significantly in recent years –  from 6.9 million in 2008 to 5.9 million in 2010 – even as the number of children in poverty has increased.  See a brief description of the findings at:


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


News from Family Voices


Family Voices Welcomes New Staff
Michele Tuohey
has joined Family Voices as the Director of Strategic Initiatives and will work in the national office in Albuquerque.  Michele has extensive experience helping non-profits in development, communications, and strategic planning and worked previously at the University of Illinois College of Business and the Latin American Museum of Art.  Helen Waldron has been hired as a Program Assistant on the NCFPP project, working in the Lexington MA office.  Helen has been very active in her local special education Parent’s Advisory Council and previously worked on research projects at the Dana Farber Cancer Center.

New Family Voices Efforts Expand Partnerships
CDC Survey on Flu Prevention and TreatmentFamily leader organizations worked diligently this fall to reach out to families, encouraging them to share their experiences and opinions on flu treatment and prevention with CDC through a survey and focus groups. The resulting 3,067 usable, completed surveys represented the highest response rate recorded in the past 10 years by CDC’s survey subcontractor, Oak Ridge Institute for Science and Education, demonstrating the capacity of the SAOs/F2Fs to effectively reach families of CYSHCN. Family Voices is pleased to announce the family organization lottery winners that were randomly selected from a pool of states reporting over 50 responses. The winning states are New Jersey, and Minnesota. A $1,000 award will go to SPAN of NJ (F2FHIC/SAO) and  $1,000 will be shared by Family Voices of Minnesota (SAO) and the Pacer Center (F2FHIC). Congratulations!

National Center for Ease of Use Linguistic Initiative
With the goal of sharing best practices in serving  families who speak languages other than English, Family Voices NCFPP is disseminating a survey from the National Center for Ease of Use of Community Based Services  to learn more from family organizations about the resources, tools, and initiatives they use to help these families connect with services and programs. Findings will be made available through webinars, at the AMCHP conference, on websites, and through an action learning collaborative.

NICHQ Sickle Cell Quality Improvement Initiative
Family Voices is pleased to partner with NICHQ in a new quality improvement project. Sherry Richardson, family leader from Georgia and Family Voices Regional Field Coordinator in Region 4, will be the Family Voices liaison working on the project. Sherry recently attended the initial NICHQ meeting of the project to work with family and professional participants on effective family participation in quality improvement. We look forward to sharing progress on this important initiative in the future!

Family-Centered Care Tool
Funding has been secured to move forward with a study to test the reliability and validity of the Family Centered Care  Self-Assessment Tool.  The study’s purpose is to test the psychometric soundness of the current tool and to revise the tool so that it will be widely useable by families and providers. Testing will include family focus groups in two states, and a web based survey disseminated through family organizations to families across the country.  You can find the current FCC family tool at:


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From Our National Partners


Archived Radio Shows on Transition
As reported in October’s issue of Friday’s Child, Got Transition, the National Healthcare Transition Center, is sponsoring a series of Radio Shows on transition topics of interest.  Archived shows are available for download.

2012 Annual Conference Registration Open
Make plans to join AMCHP at the Omni Shoreham Hotel in Washington, DC, from February 11-14. The theme this year: Improving Maternal and Child Health Across the Life Span: Acting Today for Healthy Tomorrows. Read more about the conference and register at:

2011 Conference
Presentations, handouts, photos, and videos of plenary sessions from the recent conference of Association of University Centers on Disabilities are now available on the conference website.  Save the Date for the next conference—December 2-5, 2012, at the Washington Hilton in Washington, DC.

Families USA
How the ACA Helps Families
This new report shows the net financial effects of the Affordable Care Act on family budgets. Findings indicate that lower- and middle-income families, both uninsured and insured, will be financial winners.

News  You Can Use

News You Can Use

Towards Health Equity—a Newsletter from the Office of Minority Health:
November was National American Indian Heritage Month. Read more about this annual celebration and other health equity news at: .

New Parent Support Group Database:
The National Perinatal Association has created a listing of parent support groups throughout the country. Information includes hospital support groups, regional and nationwide groups offering support on grief/bereavement, maternal/family emotional support, preemie support, and special needs children. See:

New Complex Child E-Newsletter:
Here’s a newsletter written by parents of special needs children for parents. The November issue is about hearing impairments. To read the newsletter and see back issues, go to:

December is 
Safe Toys and Gifts Month 

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