September 2011

September 21, 2011

September, 2011: Download a Printable Version here.

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Feature Story: Disaster Preparedness: A Partnership with FEMA

Family Leadership in the States:

Legislative Corner: Washington Update

News from Family Voices:

From Our Partners:

News You Can Use:

Feature Story: Disaster Preparedness: A Partnership with FEMA

floodingA 2011 has seen a number of natural disasters: flooding, hurricanes , earthquakes, tornados, severe drought. Getting help to families with special health care needs is key—but it requires knowledge of where they are and what their specific needs are. Ideally, that knowledge is available before a disaster strikes. Serious flooding this year in North Dakota  displaced 5000 families. Families reached out to Family Voices of North Dakota (FVND) seeking help with resources, housing, continued therapies, and more. A powerful partnership between FVND and  the Federal Emergency Management Agency (FEMA) was established to help.

Recognizing the special needs that persons with disabilities face in natural disasters, FEMA has placed a disability liaison in each of their ten national regions to identify “go to” people in the states who can be of assistance in locating resources when emergencies occur. FVND was identified as a key organization serving families of CYSHCN and became  an official FEMA Partner. FEMA picked up 600 copies of the FVND resources, including their resource guide.

FEMA works with partners to develop state emergency plans including supports for persons with special health care needs and/or disabilities. Having contacts “on the ground” and ready to help saves a tremendous amount of time—which is critical in the midst of a disaster.

Donene Feist, Executive Director of FVND, indicates that the President must declare disaster areas before FEMA can provide support; then funds can be designated to help persons with disabilities. “We didn’t know this. We could have used additional staff to address the needs of our families.”
“FEMA Partners are updated daily on issues, needs, happenings, etc. Meetings kick in; we alert them to issues, and they alert us as well.  I believe with the resources and information that we have, this is a good partnership,” Donene said. “It will first and foremost help families quicker; often they do not even know what to ask.”

Vermont Family Network, home to the VT F2F and FV State Affiliate, FEMA and other disability support and advocacy partners are working together in that state to provide needed support for the families impacted by ongoing flooding. 

Family Voices can help link regional relief agencies with Family Voices State Affiliates and F2F HICs who serve families of CYSHCN in every state.

There are many good resources on the Internet to help families and specifically children and adults with disabilities. Check:


Family Leadership in the States

Family Leadership in the States


Michigan’s Transition Toolkit—Partners Working Together
Michigan’s youth with special health care needs and their families have a new transition-planning tool, “Helping Young Adults with Disabilities Reach Their Hopes and Dreams Toolkit,”  the result of a collaborative effort spear-headed by a family organization, Michigan’s F2F HIC, led by Director Lisa Cook-Gordon.

Lisa had helped her son transition from special education to the real world and from pediatric to adult health care, but in the absence of any supported or facilitated transition planning. The MI F2F grant included an activity to develop a video built around health and education guidelines (Indicator 13) to measure transition outcomes at the state and local school level. The initiative was expanded to include the creation of a companion CD with tools to help young adults make the transition from pediatric to adult health care : a transition timeline, transition worksheets for young adults and caregivers, and a transition plan of care.

The toolkit would not have happened without the partnerships that Lisa helped pull together. She learned from her Part C and Early Intervention background the value—and necessity—of building partnerships to get important work done. “I don’t know how to do anything unless it is with key partners who share the same passion,” says Lisa. “The smartest thing we did was to pull in other agencies—we needed their buy-in and support. Our grant was small, and this was the only way to accomplish this. It’s all about collaboration.”

The first step: “Who would we need at the table? Who serves the Michigan special needs  population ages 14 to 26?” As a result, 45 partners are now working together. They have also developed a series of three well-received family and professional trainings.

“As a family-run organization, we have to partner with key professional stake holders in order to get what we need to serve our children. Without this partnership we’d be working in silos duplicating effort or competing and contradicting one another.” Lisa acknowledged that they had to look at ways to help their partners as well—what will best meet their needs.

The partnership includes many state level agencies: ADRC (Aging and Disability Resource Center), ARC, Association for Children's Mental Health, Department of Community Health Chronic Disease, CSHCS, and Children's Mental Health Divisions and Developmental Disabilities Council, Department of Education Transition Project and PTI, Department of Rehabilitation Services, Medicaid Infrastructure Grant, Disability Rights Coalition, Protection and Advocacy Services, UCP, and local employment, health, housing, mental health, and independent living representatives. “We knew for the effort to be state-wide we had to work at that level.”

The bottom line? “A family organization can facilitate this kind of collaboration. You don’t hear of that very often. It can be done!”

Download the CD and toolkit on the Youth Advisory Council’s website,  Learn more about the MI F2F HIC at 

Legislative Corner

Legislative Corner

Washington Update
In the July’s Friday’s Child, we talked about the negotiations over the debt ceiling and the cuts to Medicaid that might ensue. Thanks in part to the efforts of people like you, who contacted their Members of Congress in support of Medicaid, the feared cuts did not occur. While this caused a collective sigh of relief, Medicaid is not yet out of the woods. 

The debt ceiling/budget deal (the Budget Control Act) created a bipartisan House-Senate “Super Committee” that is charged with finding ways to reduce the long-term deficit. Its recommendations to Congress are due on November 23, and Congress must take an up-or-down vote on them by December 23. 

The Committee is expected to consider cuts to entitlements such as Medicaid, as well as to other programs important to children with special health care needs, such as the Title V Block Grant. In considering ways to reduce the federal costs of Medicaid, the Committee could recommend changes to the federal match, which might shift costs to states and ultimately lead to cuts in services. They could also recommend repeal of the “maintenance-of-effort” provision, which now prohibits states from changing Medicaid or CHIP eligibility rules or procedures for children until 2019. 

If the committee does not reach an agreement, if Congress rejects its recommendations, or if its recommendations do not achieve a certain level of savings, then automatic across-the-board cuts will be implemented. These “sequesters” would not apply to Medicaid, CHIP or SSI, but would apply to Title V and other important programs.

Members of the Super Committee are:  Senators Murray (D-WA) (co-chair), Baucus (D-MT), Kerry (D-MA), Kyl (R-AZ), Portman (R-OH) and Toomey (R-PA); and Representatives Hensarling (R-TX) (co-chair), Upton (R-MI), Camp (R-MI), Van Hollen (D-MD), Clyburn (D-SC) and Becerra (D-CA). 
Child health advocacy groups such as Family Voices will be working hard in the next few months to ensure that Medicaid, SSI, and other crucial programs are not harmed.  

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


News from Family Voices


Families Needed: Share Your Opinions on Flu Prevention and Treatment with CDC Family Voices  is partnering with the Centers for Disease Control (CDC) in a campaign to learn from families of CYSHCN about their knowledge, attitudes, and beliefs related to influenza prevention and treatment.  If you are a family member of a CYSHCN, please take time, right now if possible, to complete a brief survey (about 15 minutes):

To access the survey in English, please go to:
To access the survey in Spanish, please go to:

The knowledge, opinion, and experiences of families are very important and will help CDC in their work to improve the health and well-being of all children with special health care needs.   Responses will remain anonymous. More information about this survey may be found in the CDC Invitation letter at

Questions? Contact Nora Wells (


Update on the Medicaid Matters Campaign:
Family Voices has continued to utilize the powerful and poignant stories and pictures received during the Medicaid Matters campaign to assist policymakers and others to understand how Medicaid works to keep families intact. These stories have proven to be a source of such valuable information because they are told from the heart, by real families courageously living in complex situations. There will be many future opportunities to use the stories already collected - on the Family Voices website or in print documents. Family Voices also expects that additional stories will be important this fall, as further deficit spending cuts are considered by the super committee. We sincerely thank those who have already provided stories. Your willingness to educate policymakers will continue to have a profound impact.  Remember it is not too late to submit a story directly to the website at

Genetic Alliance Receives Overwhelming Response to Survey:
The Genetic Alliance recently worked with both Family Voices and The Arc to seek out parents to share their experiences about learning to advocate on behalf of their children with special health care needs. The Alliance received nearly 600 responses to their survey that included several narrative questions. Some parents reported that the survey helped them realize how far they had come and what they had accomplished. With any survey, it is important to try to reach a diverse community that reflects the unique styles and cultures of all families. Although this survey design may have been challenging for some parents to write their responses, efforts were made to find alternative means for capturing the incredible wealth of knowledge that parents have regarding advocacy and leadership. The information provided will be disseminated in the future and available on the website. 

New Bright Futures for Families:
Here are some resources to share with families and professionals


From Our National Partners


New Report on Transition in the Medical Home
This report describes guidelines for making individualized transition planning a standard of care for all youth and young adults, including those with special health care needs.
“It’s Natural”—a New Video
The National Center for Hearing Assessment and Management (NCHAM) has a new video for parents of newborns, as well as other videos and resources related to hearing screening and early treatment of hearing problems.

Cultural and Linguistic Competence
The Agency for Health Care Research and Quality (AHRQ) Health Care Innovations Exchange website has a new webpage, “Honing Cultural and Linguistic Competence,” featuring programs and tools for improving cultural and linguistic competence and reducing health care disparities:

News  You Can Use

News You Can Use

Medicaid and its Role for CYSHCN: A Family Perspective
The Georgetown University Center for Children and Families, along with Family Voices, have created this report on the impact of Medicaid on CYSHCN in the midst of the ongoing deficit reduction debates, based on interviews with families across the country who will be put at risk if there are cuts to Medicaid.

America's Children: Key Indicators of Well-Being 2011
This report from the Federal Interagency Forum on Child and Family Statistics presents key indicators relevant to children’s well-being, including population and family characteristics, economic security, health, behavior and social environment, education, and family structure.

2011 KIDS COUNT Data Book
Here’s the Annie E. Casey Foundation’s annual KIDS COUNT Data Book with state-by-state statistics on such indicators as infant mortality, child and teen death rates, teen birth rate, percentage of babies born underweight, and the child poverty rate. The Data Book also provides strategies to address the concerns.

CDC’s new Fragile X Syndrome website
The Center for Disease Control and Prevention’s new Fragile X Syndrome website has information on this syndrome, associated conditions, and related concerns.

HHS Recommends Screening for Congenital Heart Defects
The U.S. Department of Health and Human Services (HHS) is recommending routine newborn screening for congenital heart defects (CHD). This pulse oximetry test is non-invasive and helps detect heart defects early—and thus saves lives. The HHS strategy includes state-by-state implementation rather than a federal mandate. New Jersey is the first state to implement the testing. 

iPad App for Preemie Parents
The Association of Women’s Health, Obstetric, and Neonatal Nurses (AWHONN) has launched a new iPad App with information and tips for the parents of preterm infants presented as videos, quizzes, articles, and exclusive online content. The first issue is free; subsequent issues are $.99 each.

The Parent Technical Assistance Centers (PTAC) Multicultural Workgroup Language Access Webinar

CDC “Learn the Signs. Act Early” Autism Fact Sheets in Multiple Languages
The University of Southern California, Center for Excellence in Developmental Disabilities (USC UCEDD) has translated this one-page Autism Fact Sheet into Arabic, Armenian, Farsi, French, German, Italian, Japanese, Korean, Mandarin, Tagalog, Thai, and Vietnamese. For copies, contact Cary Kreutzer, MPH, RD, at

Health Care Provider’s Guide to Islamic Religious Practices

September is Newborn Screening Awareness Month

September is Newborn Screening Awareness Month





October 3, 2011 is Child Health Day and the work of the F2F HICs
will be featured in this year’s theme,
Helping Children Lead Healthy Lives. 

More information will soon be posted to




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