Description: The Family to Family Health information Center, housed within the Missouri Family-to-Family Resource Center, focuses on creating collaborative and respectful partnerships between families of children and youth with special health care needs (CYSHCN), health care providers, policymakers, programs and agencies at local, state, and national levels. Through peer support, leadership and advocacy education, and informational resources, this project seeks to increase opportunities for families of CYSHCN to be empowered and access services that are most beneficial to them.
Project Contact: Michelle Reynolds, 816.235.1759, firstname.lastname@example.org
Project Period: 2008-2014
Annual Funding: $95,700 (FY2014)
Funding Source: Health Resource and Services Administration (HRSA)
Applied Research: MoF2F evaluates its effectiveness in providing informational and referral resources, peer support and leadership training.
Community Services and Supports: MoF2F collaborates with state systems as well as regional and local affiliate organizations to provide information and peer support to requestors. Affiliate organizations also receive technical assistance and training from MoF2F. Currently, over 150 affiliate organizations participate in statewide and regional stakeholder meetings. Stakeholders at the statewide meeting represent an average of 56% family members and self-advocates.
Information Dissemination: MoF2F develops and disseminates information relating to diagnosis and life course topics throughout the state for families and professionals.
Interdisciplinary Personnel Preparation: MoF2F staff provide technical assistance and training to professionals serving in the field on the life course, family-centered practices, supporting families, and current practices for individuals with special health care needs and their families (healthcare transitions, health insurance and the ACA, partnering with professionals, navigating systems, care coordination within a medical home, self-determination, self-advocacy, leadership, etc.).
Program Need and Historical Context
- Current systems of services for CYSHCN and their families are disconnected and fractionalized. Families frequently report difficulty navigating systems, accessing supports, and finding services.
- Almost 20% of Missouri’s CYSHCN experience conditions that usually affect their daily activities.
- 13% of CYSHCN children miss more than 11 school days/year due to illness.
- 31% of Missouri’s CYSHCN have inadequate insurance.
- 9% of Missouri’s CYSHCN families devote 11 or more hours/week providing or coordinating their child’s health care.
- Over 19% of CYSHCN families have health-related out-of-pocket expenses of $1,000 or more yearly.
- Nearly 20% of CYSHCN’s conditions require a family member to cut back or stop working.
- Nearly 16% of CYSHCN families experience financial difficulties because of their child’s health issues.
Consumer and Community Involvement
Project is family driven. Family members participate in all components and activities of the F2F project. Families and youth serve as volunteers providing peer support and serving in advisory roles.
- MoF2F hosts quarterly Family-to-Family stakeholder meetings to facilitate a strong network of support for families across Missouri. Meetings create an information and network exchange between stakeholders and promote development of products and activities to meet identified unmet needs.
- Self-Advocates and family members are connected to volunteer opportunities such as reviewing products, developing content; serving as Sharing Our Strengths (SOS) peer support mentors, hosting conference exhibits, and serving on advisory boards.
- MoF2F staff consists of family members: the Project Director is a sibling, the Family Advocate, Peer Support Coordinator and a support staff are parents of children with disabilities.
- The Institute serves as the lead agency and evaluator of the F2F-HIC and oversees the administration of its implementation by providing the infrastructure where information/resources, peer support, leadership, and advocacy opportunities are provided to families.
- In conjunction with the MO Family-to-Family Resource Center:
o Over 1,000 people received information and peer support through the MoF2F per year.
o MOF2F presented its services to over 10,000 attendees at 74 different locations, such as statewide disability conferences, parent groups, Regional Centers and workshops.
o The web site has over 400 disability-specific and disability topic articles available to the public as well as IHD products, a national support directory, and a calendar of events.
o Dissemination of over 60,000 network folders
- Institute staff provide technical assistance, training, and leadership to ensure families of CYSHCN, as well as youth, drive the activities and serve as volunteers thus ensuring successful outcomes.
- Partnering Together Newsletter
- Family Leader Certificate Series
- Core Competencies of Family Leaders: A Guide for Families and Organizations
- LifeCourse Webinar Series
- AMCHP Poster Session on the LifeCourse framework
System: The F2F strengthens and builds the capacity of families, self-advocates, as well as systems and organizations supporting families in Missouri.
Personnel: Families and youth with SHCN receive information and peer support and participate in leadership opportunities that improve their access and quality of services.
Leveraging: Funding is provided by federal HRSA dollars.