Family Voices Restructuring
by Sophie Arao-Nguyen, Family Voices Executive Director
Have you heard someone mention an "SAO," an "NFC," or an "RFC" and wondered what they are? Have you received an invitation to become a member of Family Voices and thought, "What is this?" Do you want to know more about the new Family Voices structure?
Family Voices has designed a new infrastructure with the purpose of creating a dynamic and effective structure based on a strong network of family-led organizations. The Family Voices Board of Directors charged FV with this direction during its strategic planning session for 2008- 2011. A group of Family Voices board members, staff, and regional coordinators crafted a plan of action, approved by the Board, to carry out this mandate.
The plan established experienced family leaders as National Field Coordinators (NFCs) and Regional Field Coordinators (RFCs) to assist in the strengthening/development of family-led organizations in each state, organized within four regions. Diana Autin, NFC, is assigned to Region 1 (CT, DE, DC, MA, MD, ME, NH, NJ, NY, PA, PR, RI, VI, VA, VT, WV) and Region 2 (AL, AR, FL, GA, KY, MS, NC, NM, OK, SC, TN, TX, LA) while Molly Cole, NFC, is assigned Region 3 (IA, IL, IN, KS, MI, MN, MO, NE, OH, WI) and Region 4 (AK, AZ, CA, CO, Guam, HI, ID, MT, ND, NV, OR, SD, UT, WA, WY).
Additionally, a brand new membership program was instituted. At the state level, State Affiliate Organizations (SAOs) are permitted to assume the title "Family Voices of (their state)" and serve as the Family Voices representative in that state. One SAO per state is accepted in addition to tribal SAOs. To date, there are 19 SAOs, while 16 other family-led organizations have declared their intention to apply to become their state's SAO. Most of the current SAOs are also the Family-to-Family Health Information Centers (F2F HICs) in their states.
The membership program also includes Organizational and Individual membership levels. Since the program was introduced in late March, in addition to the SAOs , Family Voices has 13 organizational members, 71 family members, 44 professional members, and 2 student members. Membership rates are as follows: $50-$500 per organization depending on organizational budget, $25 for family members, $50 for professionals, and $15 for students.
Benefits for Organizational and Individual members include discounts, early notification of events, and inclusion in FV-Talk, a members -only listserv. Membership dues help provide education, advocacy, and technical assistance on children and youth with special health care needs and disabilities across the country.
Family Voices is on its way to having a more solid and stable infrastructure. With the strengthening of the SAOs, each state will increase its ability to raise funds and compete for more grants so they can serve children and youth with special health care needs/ disabilities and their families for a long time to come.
Family Leadership in the States:
Parents and Pediatricians Create a "Map to Services"
Receiving a diagnosis of autism can be overwhelming for parents. At a recent Association of University Centers on Disabilities (AUCD) meeting in Seattle, Washington, pediatricians discussed how challenging it is to know whether they are giving a family too much information or not enough. Family leaders spoke of the importance of receiving emotional support and, as their child grows, help in developing advocacy skills. Family leaders impressed upon providers the critical role that other families play in providing such supports. As a result of this vibrant dialogue, Julie Finholm (PAVE F2F HIC) and Susan Ray, Title V Director, strategized how to develop a tool about community resources for providers to give to families.
With input from partners across the state of Washington, My Child's Map to Services, a guide for families in accessing community services, was created. It provides short definitions of therapeutic services and descriptions and contact information for state services, including family-to-family support. Reviewed by over 100 families on the Combating Autism Taskforce ensured that the tool's language is clear and appropriate to all families, regardless of income or insurance coverage. With the help of community brokers and focus groups, versions of this tool have been developed for Spanish-speaking, Korean and Cambodian communities.
To date, over 2000 booklets have been distributed to hospitals, pediatric practices, speech and occupational therapy practices, and family-run organizations. The booklets have also been distributed to the Washington State's Insurance Commissioner's Office through the Statewide Health Insurance Benefits Advisors program. This tool may be accessed on the WA F2F website at http://www.familyvoicesofwashington.com/Publications.html.
Note: This article was originally written for the monthly newsletter of the Committee on Children with Disabilities, a committee of the American Academy of Pediatrics.
Family Voices Goes to the White House for ADA Anniversary!
Here's the Family Voices contingent at the White House event commemorating the 20th anniversary of the enactment of the American with Disabilities Act (ADA). From left to right: Janis Guerney, Mary Baskar, Vijay Baskar, Kelly Meissner, and Ashley Meissner. The best thing about the event was that the kids got to meet the President! There were very few other children at the event, which included some speeches and entertainment by Patti LaBelle, Nathaniel Ayers, Marlee Matlin and others.
Next month will be the six month anniversary of the signing of the Affordable Care Act into law. Implementation continues to move full speed ahead, with the big news this week being the passage of the bill to extend the Federal Medicaid Assistance Percentages (FMAP) for six months. Without this extension, the FMAP would have expired on December 31, 2010, affecting especially those hit with job losses and high health costs.
While we continue to monitor the implementation progress, here are some resources you can explore on your own for on-going information:
* Healthcare.gov-a governmental website with resources by age group as well as updates on health care reform.
* Families USA-a website working "to promote high-quality affordable health care for all Americans."
* AMCHP-a familiar resource for Friday's Child readers. Note especially the Health Reform Resources page.
* Here's specific AMCHP resource, an overview of Health Care Reform: "Implementing Health Reform: Key Provisions and Opportunities for Title V MCH Programs"
* Health Reform Implementation Timeline: Key Provisions for Women's Health-Here's a timeline from the National Women's Law Center that is somewhat focused on women's health, but much of the timeline applies to all of the health reform.
If you have questions, please contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.
Call for Session Proposals: FV & AMCHP National Conferences
The 2011 Family Voices National Conference will take place on February 12-15, 2011, at the Omni Shoreham Hotel in Washington, DC, in conjunction with the 2011 Annual Conference of the Association of Maternal & Child Health Programs (AMCHP). Both conferences will focus on the theme, Working Together to Improve Maternal and Child Health.
The Family Voices and AMCHP co-located conferences are the ideal venues to present your ideas, research, innovative programming, best practices, and effective outreach strategies to MCH and other public health practitioners, family leaders, researchers, federal officials, advocates, healthcare providers and directors of state programs.
Visit http://www.amchp.org/Events/amchp-conference/Pages/default.aspx to submit your proposal to present at the Family Voices conference, the AMCHP conference, or a shared session.
The deadline for session proposal submissions is August 23, 2010. You will be notified about the outcome of your submission by October 15, 2010.
News You Can Use:
Resources and More
Registration Open for DiversityRx 2010 Seventh National Conference on Quality Health Care for Culturally Diverse Populations
This year's conference will be held October 18-21, in Baltimore, MD. The theme will be "Improving health care for culturally diverse populations: A new place on the national health agenda," and will feature speakers from US Department of Health and Human Services, the Joint Commission, the National Committee for Quality Assurance, and the National Quality Forum. For more information, go to http://www.diversityrxconference.org/2010.
2007 National Survey of Children's Health (NSCH) Child Health and System Performance Profile Demonstrates Health Disparities
These state snapshot reports from the Data Resource Center and the Child and Adolescent Health Measurement Initiative allow a state-by-state comparison on 21 key health status and system performance measures related to chronic conditions, complexity of health service needs, health insurance, access to care, preventive care, and medical home. Click here.
Insure Kids Now-Children's Health Insurance Toolkit
This toolkit, sponsored by the US Department of Health and Human Services, is designed to help organizations increase awareness and understanding of children's health insurance programs to promote enrollment, especially in public programs. The toolkit includes background information, document checklists, event posters, fact sheets, public service announcement scripts, and web banners. The toolkit is customizable and is available at: http://www.insurekidsnow.gov/professionals/toolkit/toolkit.html.
Administration on Developmental Disabilities (ADD) Seeking Family Input
Sharon Lewis, ADD Commissioner is requesting family input to help shape future plans to ensure that the Administration meets the needs of diverse individuals. Post your thoughts and experiences concerning the focus of future Projects of National Significance through a web-based survey available until September 1, 2010 at: http://www.acf.hhs.gov/programs/add/survey/survey_landed.html.
National Standards for Newborn Screening
In May, Secretary of Health and Human Services Kathleen Sebelius announced the firstever national standards for newborn screening, as recommended by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. These standards will ensure consistency in standards across the country in practices and technologies in detecting inheritable diseases.
The National Newborn Screening and Genetics Resource Center have created a one-stop website for locating state-by-state information on screening groups, fees, resources, labs, births, statutes, conditions tested for, etc. See http://genes-r-us.uthscsa.edu/resources/consumer/statemap.htm. In addition, you'll find links to Newborn Regional Screening Collaboratives at http://genes-r-us.uthscsa.edu/resources/genetics/StatePages/genetic_region_map.htm.
From Our National Partners
MCHB 75th Anniversary Celebration
On Wednesday, October 20, 2010, the Maternal and Child Health Bureau (MCHB) will hold a special Federal/State Maternal and Child Health Partnership Meeting in Washington, DC to commemorate the 75th Anniversary of Title V of the Social Security Act and in recognition of the rich history of its programs. Check with your Title V program and offer to participate in planning a local celebration in your state. Read the official invitation letter, view the save the date flyer and find out more information on the event at http://www.hrsa.gov/ourstories/mchb75th/.
Congratulations to AMCHP for being given an Outstanding Leadership and Advocacy Award by the Maternal and Child Health Section of the American Public Health Association! AMCHP will be honored at APHA's 138th conference in November in Denver, CO.
The Advocates Partnership Program: Here's an opportunity for community organization leaders, individuals, and families affected by genetic conditions, including youth, to attend the American Society of Human Genetics (ASHG) meeting November 2-6, in Washington, DC, to "foster collaborations between the advocacy community and genetics professionals, including researchers." Participation in the program includes free registration, a $250 travel stipend, and networking. Visit http://www.geneticalliance.org/ advocates.opportunities
- Healthy Children Symptom Checker -AAP's new Parent website has a symptom checker that you can search by clicking on the outline of a child where the problem is (or use more conventional methods). Further clicking leads to advice on when to call the doctor, and what to do to help alleviate the symptoms.
- "Enhancing Pediatric Mental Health Care: Report from the American Academy of Pediatrics Task Force on Mental Health" -This supplement to the June 2010 issue of Pediatrics includes articles on community and primary care strategies, as well as screening rationales and other useful mental health resources.
WE WELCOME TWO NEW PARTNERS!
NATIONAL HEALTH CARE TRANSITION CENTER FOR YOUTH WITH SPECIAL HEALTH CARE NEEDS:
The project will assure that youth with special health care needs are prepared for their transition from pediatric to adult health care and that they experience a smooth and seamless transfer of care from pediatric primary care and specialty care to adult settings. NH's Center for Medical Home Improvement was awarded the cooperative agreement in 2010 to operate this national center. Visit http://www.medicalhomeimprovement.org/index.html.
INSTITUTE FOR COMMUNITY INCLUSION (ICI):
Through a three-year cooperative agreement, the ICI will establish the National Center for Community-Based Services to ensure that neighborhood health centers and other community services are easy to use for families of children and youth with special health care needs. The center will provide resources to Title V directors, service providers, and families. Project partners include the Children's Hospital Boston, the Parent Advocacy Coalition for Educational Rights, AMCHP, and the AAP, and is funded by MCHB/HRSA. Visit http://www.communityinclusion.org/.
Thank you for your interest in Friday's Child. To subscribe to the e-newsletter version, please visit http://www.familyvoices.org/pub/fc/. Should you have any questions about this newsletter, please email Peggy Curran.