In the Wake of Hurricane Sandy, Family Voices Provides Support to Families of Children with Special Health Care Needs through its Network of Affiliates and Partners

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As agencies along the eastern seaboard work to help families of children and youth with special health care needs and disabilities affected by Hurricane Sandy, Family Voices State Affiliate Organization (SAOs) and partners from around the country provide support based on experience in similar situations.

Through its national network Family Voices is able to channel essential information and resources where they need to go at this critical time, to help families of children with special needs who have been impacted by Hurricane Sandy."

When disaster strikes, families of children and youth with special health care needs (CYSHCN) and disabilities can be hardest hit because they lack specialized supplies, equipment, and medical services critical to everyday life. Of the 100,000 people displaced or left homeless as a result of Hurricane Sandy (1), statistically it is likely that approximately 24,000 of them were children (2), and at least 14% of these children have special health care needs or disabilities (3). It is also likely that almost 30,000 of the 850,000 people evacuated before Hurricane Sandy (1) were children and youth with special health care needs or disabilities. Even when these children return to their homes, the evacuation may have lasting impacts on their health, both emotionally and physically.

Relief agencies like the Red Cross, Salvation Army, and local churches may not have the specialized knowledge to locate and provide the right resources to these families and children as quickly as possible. So, local agencies that specialize in helping families of CYSHCN or disabilities offer vital support.

For example, in New Jersey, immigrant families of children with special needs in the Winning Angels Family Support Group of hard-hit Hudson County received direct help from the Family Voices State Affiliate, the Statewide Parent Advocacy Network (SPAN). Henry Tejada, bilingual Family Resource Specialist, went to families’ homes bringing water, food, and supplies; checking on their other needs; and even transporting some of them to safer locations. SPAN also developed a family tip sheet, in English and Spanish, as well as a resource sheet for agencies working with families who have children with special needs, and posted it on their Facebook page and website.

Diana Autin, Executive Co-Director of SPAN NJ said:

“Now that our offices are open again, although with a skeleton crew (since most of our staff are still without electricity, hot water, heat, and phone or internet services), we are hearing from families who have lost equipment, special foods, etc. and are helping to connect them to the resources that can address those specialized needs immediately. We are reaching out through our volunteer SPAN Resource Parent network and local district Special Education Parent Councils to share information and provide assistance. We are also touching base with other agencies such as the county Special Child Health Services Case Management Units to make sure they are available to support families.”

However, local agencies may not have all the information needed to help families in their areas most effectively, particularly if they haven’t previously provided support during disasters of similar magnitude.

Family Voices Executive Director Lynn Pedraza said:

“Through its national network of State Affiliate Organizations, as well as the Family-to-Family Health Information Centers (F2F HICs) we work with around the country, Family Voices is able to channel essential information and resources where they need to go at this critical time. There is no need to ‘reinvent the wheel’ in the midst of a disaster – our family-run organizations in other states have the experience and are happy to share it. Family Voices helps by connecting them, and organizing the information. When you’re in the middle of a disaster, it’s important to know you have friends with experience who are standing by to help you through it.”

To locate a Family Voices State Affiliate Organization or F2F HIC for a particular state visit the Family Voices web site at

Karen Scallan, Program Director of the F2F HIC in Louisiana, Family Voices' local State Affiliate Organization, responded to requests for information by sharing her hard-won experience with similar concerns during Hurricanes Katrina, Gustav, and Isaac:

“Donated supplies can tend to be expired or not in good condition, if they are equipment donations. I had this experience in Katrina. We suggest you have people contact their insurance companies and Medicaid for replacement items or supplies first. The Developmental Disabilities Councils may also receive money from the federal level for F2F HICs or others to go into shelters and seek individuals with disabilities who need assistance. Check with them.”
Scallan also offered suggestions for how SPAN NJ and family organizations in other states most impacted by the storm may be able to help relief agencies provide triage for individuals with disabilities. And she forwarded documentation of relief procedures and resources, and provided other advice and immediately useful information.

Additional experience, comfort, and support flowed immediately through the Family Voices communication network spurred by the affiliate in North Dakota, and reinforced by SAOs/F2F HICs in states such as Alaska, Ohio, Tennessee, Washington, and Indiana.

Josie Thomas, Executive Director of The Parents Place of Maryland, Family Voices' local SAO and the F2F HIC in that state, said:

“While we in Maryland did not receive the hit that NJ and NY did, we have many families on our Eastern Shore whose homes are flooded, or who are without power, phones, and drinkable water. Schools have been closed so they can be used as shelters. For those of you who are responding to the requests for information regarding Sandy and emergency resources, we thank you. You are providing such important information for all of us as we work through the mess Sandy left behind.”

Amy Westfall, Family Support Program Manager at Stone Soup Group in Alaska, Family Voices' SAO and F2F HIC partner in that state, summed up the sentiments many were feeling about the importance of the support network:

“In Alaska, we don’t have many natural disasters but we have damage caused by flooding and winds, so we have lots of experience. SPAN NJ and other folks working with the people affected by Hurricane Sandy, if you need anything more throughout all of this, just ask. We’re all here. I’m glad we have this network.”

There is one Family-to-Family Health Information Center in each state and the District of Columbia. These agencies are networked together and receive support through the National Center for Family and Professional Partnerships, a program of Family Voices that is funded by the U.S. Department of Health and Human Services’ Maternal and Child Health Bureau. For a brief overview of the NCFPP’s work watch this 3-minuteYoutube video, .

Family Voices has also launched the Family Voices Families Helping Families fund to raise money that will go directly to SAOS and F2F HICS in the states affected by Hurricane Sandy to provide relief to CYSHCN and/or disabilities in these areas. Donations will be used to help with immediate needs for families, like specialized equipment, foods, medications, and clothes. The funds will also be used to help families find shelter and services, access and complete applications for insurance reimbursement, FEMA assistance, and Medicaid services.

For more information about Family Voices visit or contact Melanie Rubin, Director of Communications, 505-872-4777, mrubin(at)familyvoices(dot)org.





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