April 2012

May 01, 2012

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Feature Story: Champions for CYSHCN: The Power of a National Network of Family Leaders

Family Leadership in the States:

Legislative Corner: Washington Update

From Our Partners:

News You Can Use:

Champions for CYSHCN: The Power of a National Network of Family Leaders

Family LeadersWhile academic training provides the foundation for many professions, family leaders begin their ‘career’ and develop their skills by facing the necessities of real-life situations. Leadership begins with a parent’s passion to help their own child and grows when a parent recognizes the value of helping others in similar situations. Certainly, skills are enhanced by structured training specifically for families or within multi-disciplinary training programs. However, what sets family leadership for CYSHCN apart is the fundamental skill development and mentorship that takes place through a vibrant national network of peers.

As the National Center for Family/Professional Partnerships (NCFPP), Family Voices helps to facilitate the network of family leaders in Family Voices State Affiliate Organizations and Family-to-Family Health Information Centers. The power behind the network, however, lies within the family leaders themselves. On a daily basis in both formal and informal settings, family leaders provide information, resources, and “from the field” advice to their peers, building and enhancing their capacity to help other families of CYSHCN. The recognized value of this peer support was underscored in a recent NCFPP Feedback Survey - individual TA provided from peer F2Fs/SAOs to each other was rated as the 3rd highest kind of support out of 76 measures.

Informal peer support occurs daily through listserv communications in which family leaders inform each other about events, research, policy trends, and opportunities, as well as seek and provide advice and resources. Topics of recent listserv discussions have included: transition plans, state threats to technology dependent waivers, guardianship, managed care, and identifying a parent match for a child with a rare condition.

More formal family leader to family leader support occurs through the NCFPP’s field-based technical assistance system. Ongoing calls with TA coordinators and fellow family leaders provide opportunities to problem solve and brain storm. For example, as a result of a regional call, Spanish-speaking family leaders created an online group communication site (Big Tent) to share resources. An on-site technical assistance initiative will provide opportunities for F2Fs to visit other F2F sites to meet around such topics as grants management, sustainability, and outreach to diverse communities.

F2F funding strongly encourages peer support through multiple avenues, including an annual F2F meeting, where family leaders plan and facilitate the workshops.

Many professional organizations provide opportunities for peer interaction; perhaps a difference within communities of family leaders for CYSHCN has been the initiatives these leaders have undertaken themselves to create opportunities to mentor and learn from one another. This way of learning is grounded in the experiences of being a parent of a CYSHCN. In order to survive as parents of our children, we have needed to depend on the willingness of other parents to share their experiences and assistance. These lessons of community and support have been the hallmark of a strong national network of connected family leadership around health issues. In times of financial uncertainty, these principles must be our foundation. They have withstood the tests of time and we can be proud to pass them along to the next generation of family leaders.


Family Leadership in the States

Family Leadership in the States

Family-to-Family Health Information Centers Linguistic Initiatives
Central to the mission and vision of Family Voices is working to serve all families of CYSHCN, including the growing population of Latinos. The National Center for Ease of Use of Community-Based Services is a key partner in this effort. Their recent survey highlights the work of ten F2Fs, whose efforts with Latino families serve as inspiration for others. Resources provided by these ten F2Fs, summarized at www.communitybasedservices.org/family-to-family, include:

  • Translation: Translation into culturally-appropriate language is perhaps the most basic support for Latino families. Examples among the ten F2Fs range from hiring bilingual staff, to translation phone and website services.
  • Network/Coalition Building: F2Fs develop networks of individual and organizational stakeholders who care about Spanish-speaking families. Members come from all sectors—academic, Spanish-speaking groups, school systems, families, etc.
  • Skill Building: F2Fs work to enhance the skills of family leaders in the Spanish-speaking community to advocate for and improve services and outreach to Latinos through mentoring, sharing of materials, and bi-lingual training opportunities.
  • Support Programs: Often in the form of support groups focused around a specific age or disability, these F2F programs encourage family-to-family sharing and peer mentoring.
  • Information Dissemination: F2Fs ensure that translated materials reach the families who need them. Innovative examples of this include statewide email listserv groups for Spanish-speaking families, and disseminating information through in-person connections to new families in community health centers and other community settings.


Learning Collaborative Awardees Announced
Another project of the National Center for Ease of Use of Community-Based Services and AMCHP, the Action Learning Collaborative, will provide funding to partnerships in four states which include F2Fs, AAP, local school districts, Medicaid, and Latino community-based organizations:

  • Indiana: develop and implement a strategic plan for addressing ease of use of services for Latino families who have CYSHCN
  • New Hampshire: create a health literacy campaign to convey changes in Medicaid and CHIP programs to Latino families with CYSHCN
  • New Mexico: making services easier to use for Latino children with metabolic disorders and diabetes
  • Rhode Island: Working with public schools to refer Latino families with CYSHCN to peer navigators 


Congratulations to Rodney Farley, Winner of the Merle McPherson Family Leadership Award!
Rodney is a Parent Consultant in the Division of Developmental Disabilities Services of the Arkansas Department of Health and Human Services and longtime Family Voices leader. This award is given annually at the AMCHP conference “for exemplary contributions to further family/professional collaboration within the state Title V program and AMCHP.”

Legislative Corner

Legislative Corner

Washington Update
As spring blossoms, it is a good time to take stock of where things stand with health care reform. The Affordable Care Act (ACA) turned two on March 23. Just a few days later, the Supreme Court heard arguments in cases challenging the constitutionality of the Act. It is nearly impossible to predict what the Court will decide. It could overturn the “individual mandate” (requirement that individuals have health insurance or pay a penalty), the significant Medicaid expansion, and all or parts of the rest of the law. If only parts of the law are struck down, it will lead to a chaotic situation, but congressional consensus to address it will be difficult to reach. The Court is expected to render its decision in June.

F2F Funding Update

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. To increase the chances that the bill will become law, it is important to secure as many cosponsors as possible.

Advocates should educate their states’ congressional delegations about the exceptional value of F2Fs to their constituents!

Meanwhile, the administration has issued numerous regulations to implement the law, including the establishment of state “Exchanges,” which will sell health insurance plans meeting certain standards. While the ACA outlines the “Essential Health Benefits” (EHB) package that plans must provide, the administration has decided to let the states work out the benefit details. This provides an opportunity for advocates to influence the contents of the EHB package, which will be very important in determining whether children with special health care needs will have meaningful coverage. Advocates for CYSHCN will also want to monitor other aspects of ACA implementation in their states, particularly the creation of the Exchange(s), which will have far-reaching implications. To see the status of Exchange legislation in your state, see www.ncsl.org/issues-research/health/state-actions-to-implement-the-health-benefit-exch.aspx. One important issue is the criteria established for “Navigators,” entities to be funded by Exchanges to assist people in selecting insurance plans or enrolling in public programs. Ideally, the criteria will allow F2F to qualify as Navigators.


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


From Our National Partners

2012 Conference Webcasts and Handouts Available
If you missed some or all of this year's AMCHP conference, the webcasts and handouts are now available.   
Medical Home Resources  

Medicaid Tutorial Catalyst Center
 Medicaid Tutorial
The Catalyst Center has a new tutorial about Medicaid and the Children's Health Insurance Program (CHIP). Learn about public health programs, why they are important for CYSHN, eligibility changes under health reform, and partnerships to improve services in this new tutorial on Medicaid/CHIP

AHRQ2011 National Healthcare Quality & Disparities Reports
For the ninth year in a row, the Agency for Healthcare Research and Quality (AHRQ) has produced the National Healthcare Quality Report (NHQR) and the National Healthcare Disparities Report (NHDR). These reports measure trends in effectiveness of care, patient safety, timeliness of care, patient centeredness, and efficiency of care. New this year are chapters on care coordination, health system infrastructure.
Kaiser Family Foundation
A Guide to the Medicaid Appeals Process
This background brief provides a comprehensive look at the appeals process for the Medicaid program, which differs significantly from those available through the Medicare program and private health insurance. The Medicaid appeals process provides redress for individual applicants and beneficiaries seeking eligibility for the program or coverage of prescribed services, but the process is multi-layered and can be complex to navigate. The guide describes Medicaid's appeals system, including the fair hearing process and the appeals process required for Medicaid managed care organizations. As coverage expands under health reform and efforts proceed to integrate services for dual eligibles, who are enrolled in both Medicare and Medicaid, protections through the appeals process will be increasingly important.

News  You Can Use

News You Can Use


Culturally Center for Medicare and Medicaid Services (CMS) Resources Available in Asian and Pacific Islander (AAPI) Languages
Translated products in AAPI and other languages.

Transition Videos from Talent Knows No Limits
Youth with disabilities discuss their transition into adulthood.

MCH Library Briefs for Fast Fact Finding
The MCH Library at Georgetown University has developed a set of resource briefs to help you quickly locate data sets, data tools, and statistics; literature and research; and programs to improve families' health and well-being. 

We Had A Little Emergency (W.H.A.L.E) Car Seat Sticker Program
A program developed by Virginia caregiver Connie Day designed to ensure that young children in motor vehicle accidents can be properly identified:

  • Information Label for the car seat with child's name, birth date, medical history, and emergency contact.
  • Two W.H.A.L.E Car Seat Stickers to be attached to the sides of the seat.
  • Two W.H.A.L.E Vehicle Stickers to be attached to the rear/side windows of the vehicle to alert emergency personnel that information is available.   

Read more about the program here: www.whaleprogram.org/index.htm

Resources on Autism

  • AAP: "Sound Advice on Autism" - a series of audio interviews with medical experts and parents of children with autism. Conversations include: screening, diagnosis, treatment, alternative therapies, prevalence and causes of autism.  www.aap.org/autism 
  • DRC: National Profile of CSHCN and Autism Spectrum Disorders - a data brief from National Data Resource Center for Child & Adolescent Health (DRC), highlights national survey findings, describes key characteristics, the impact on families, and the effect of health system performance and environment. www.childhealthdata.org
  • AMCHP: "The Affordable Care Act and Children and Youth with Autism Spectrum Disorder and Other Developmental Disabilities." www.amchp.org/programsandtopics/CYSHCN/resources/Documents/ACA_AutismFactSheet_2-29-12.pdf 
  • CDC Report: Autism on the Rise - 1 in 88 U.S. children have autism spectrum disorder. www.cdc.gov/media/releases/2012/p0329_autism_disorder.html.  Read the Family Voices press release at www.familyvoices.org/news/latest?id=0174.  

 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