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October 10, 2013 Theresa A. Hart, RNC, MS Perinatal and Special Needs Nurse Consultant Office of the Chief Medical Officer 700 Arlington Blvd., Suite 5101 Falls Church VA 22042-5101 Submitted electronically to: theresa.hart@tma.osd.mil

Re:

TRICARE for Kids – Report required under Section 735 of the National Defense Authorization Act of 2013

Dear Ms. Hart: On behalf of Family Voices, I would like to provide some suggestions with regard to the study that the Department of Defense is conducting on pediatric care in the TRICARE program pursuant to Section 735 of the National Defense Authorization Act of 2013. Since its founding in 1992, the mission of Family Voices has been to achieve family-centered care for children and youth with special health care needs. Through our network of state affiliate organizations and federally funded Family to Family Health Information Centers, we assist families to navigate the complex system of services. Since some of these families are in the military, we are very interested in the way that services to their children are delivered and paid for under the TRICARE program. Over the last few months, we have been working with a stakeholder group of pediatric health care advocacy and professional organizations, disability advocacy groups, military family advocacy organizations, and representatives of military families to discuss the issues facing military children and their families, share experiences and expertise, and provide thoughtful and expert input for consideration as the DoD conducts its TRICARE for Kids review. Family Voices supports the recommendations made by these organizations, and offers the following additional suggestions on two aspects of the study: (8) Mechanisms for linking dependent children with special health care needs with State and local community resources, including children's hospitals and providers of pediatric specialty care.

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(9) Strategies to mitigate the impact of frequent relocations related to military service on the continuity of health care services for dependent children, including children with special health and behavioral health care needs.

Mechanisms for linking dependent children with special health care needs with State and local community resources, including children's hospitals and providers of pediatric specialty care. The Family Voices’ state affiliate organizations and the Federally funded Family-to-Family Health Information Centers (F2FHICs) provide excellent mechanisms through which families can be linked with state and local community resources for their children with special health care needs. Accordingly, Family Voices recommends that military facilities and TRICARE contractors develop partnerships with Family Voices and the state F2F HICs. Pursuant to Section 501(c) of the Social Security Act, there is one F2F HIC in each state. They are non-profit, family-staffed organizations that help families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. Because the health care needs of CYSHCN are chronic and complex, parents and caregivers are often challenged with finding the resources to provide and finance health care for their children. F2F HICs are uniquely able to help families because they are run by parents and family members of CYSHCN who have first-hand experience navigating the maze of services and programs for CYSHCN. Staff at F2F HICs understand the issues that families face, provide advice, offer a multitude of resources, and tap into a network of other families and professionals for support and information. F2F HICs provide assistance in a variety of ways, including support and referral through direct telephone, e-mail or in-person contact, training through workshops, advocating for and connecting families with resources, running listservs and websites, and developing newsletters and familyfriendly publications. For example, Family Voices’ state affiliate and parent organization of the F2F HIC in New Jersey, the Statewide Parent Advocacy Network (Inc.), manages the Military Family 360 Support Center, a one-stop center assisting active duty, retired military, National Guard and Reserve personnel throughout New Jersey who have children with disabilities. They assist military families by: (1) developing a family plan to address their concerns; (2) assisting with access to family resources; (3) offering family to family emotional support and information; (4) offering training sessions on accessing health care, education, and other services; and (5) providing advocacy to help families overcome barriers faced by families trying to access services. A list of Family Voices’ state affiliates can be found at www.familyvoices.org and the F2F HICs in each state can be found at http://www.familyvoices.org/f2f-grantees. Strategies to mitigate the impact of frequent relocations related to military service on the continuity of health care services for children with special health and behavioral health care needs.

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When families whose children have special health care needs are relocating, we recommend that they routinely be provided with contact information for the F2F HIC in the state to which they are moving. This information should be provided as soon as the relocation decision has been made, so that the family can contact the F2F HIC even before they move. The staff of the F2F HIC can provide the family with information about that state’s particular Medicaid eligibility criteria, Medicaid waivers, Title V Maternal and Child Health programs, children’s hospitals, and pediatric sub-specialists. This will help the family to identify resources at their new location, and perhaps even find appropriate health care providers, arrange for services, and apply for benefits before they relocate. In addition, the F2F HIC should be able to link the family with others in their area – perhaps even on their base – who have children with special health care needs and might be able to provide emotional and practical support. Thank you for considering our comments. If you have any questions or would like additional information, please feel free to contact Lynda Honberg, Family Voices’ Interim Director of Strategic Partnerships. Ms. Honberg can also offer personal experience, having recently retired as a Captain after serving for 26 years in the Public Health Service and a mother of a youth with special health care needs. She can be reached at lhonberg@familyvoices.org.

Sincerely,

Cristine Marchand Interim Executive Director Family Voices

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TRICARE For Kids - Family Voices