The Nevada Family-to-Family Healthcare Information and Education Center provides statewide support to families of children and youth with special health care needs by:
PROBLEM: Families with children who have disabilities and special health care needs face challenges which are chronic and complex - impacting their quality of life and basic health conditions. According to the 2006 National Survey of CSHCN, there were approximately 63,000 children and youth with special healthcare needs living in Nevada - representing 12% of the Nevada total child population. The disability population increased 157 percent from 1990 to 2000, and Nevada ranks 50th in per capita funding for mental retardation and disability services. The state also lacks appropriate pediatric specialists which forces families to seek medical care for their child in neighboring states. Parents frequently find themselves lost in a fragmented system of support, and once they locate basic services - face other obstacles such as getting appropriate medical care and insurance.
GOAL(S) AND OBJECTIVES: Family TIES of Nevada proposes to build upon its strength as a state-wide Family-to-Family Health Information Center and enhance its capacity to offer training, information, emotional support and advocacy in a family-centered, culturally competent manner to families of CYSHCN. Families will be helped as they navigate public and private systems to make informed choices about care options in order to promote good treatment decisions, cost effectiveness and improved health outcomes. Through this grant, the NVF2F will develop new resource materials, implement the Parent-to-Parent peer support and youth mentoring program, expand print, digital, and other marketing and resource materials; evaluate the cultural competence of service delivery models; implement a plan for program sustainability, and strengthen strategic partnerships. To monitor the effectiveness of the family-support program, we will develop an evaluation plan which will improve levels of competency, services; and participate in the Family Voices Data Collection project.
METHODOLOGY: The NV F2F will cultivate its family-centered approach by insuring a consumer majority on its board of directors, staff and advisory council. Staff will operate from two offices, based in Reno and Las Vegas, and independent contractors will provide professional services with evaluation, and other specialties. Project activities include face-to-face workshops, web-based training center, topical call series, toll-free parent support information/referral line, public presentations, e-newsletter, and print newsletter - Connections with featured topics, website, and an on-line Resource Directory.
COORDINATION: The NVF2F coordinates services with the Nevada Bureau of Child, Family and Community Wellness Title V CSHCN program, and Nevada 2-1-1 Partnership to help provide disability specific information to the public, and through the CSHCN Helpline. Project partners also include the N. Nevada Center for Independent Living (ADRC project), Nevada University Center for Excellence in Disabilities, and the Nevada Partners in Policymaking Leadership Development program. The NVF2F hosts the state chapter of Family Voices, and a member of Parent to Parent USA Alliance.
EVALUATION: The Center for Program Evaluation at the University of Nevada, Reno, will work with the NVF2F to track programming outputs (i.e., families provided information, education and/or training) and outcomes (i.e., access to care, partnering in decision-making, advocacy) through evaluation measures which will address the development of a tracking system for the collection and analysis of data on families, professionals, and training participants.
ANNOTATION: The NVF2F will provide a place for families to access peer support to help navigate the disjointed system of care for children and youth with special health care needs in Nevada. Through family-centered, community-based and culturally competent care, services include training, information, support, and advocacy - offered by workshops, conference calls, web-based training center, toll-free parent support information/referral line, newsletter, and on-line Resource Directory.