Family Supports

Family-to-Family Health Information Centers (F2Fs) are family-run organizations that provide information and assistance to families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. Many Title V/CYSHCN programs and Medicaid agencies work collaboratively with the F2F in their state to ensure families with CYSHCN have the information, resources, and assistance they need to understand, enroll in, and fully utilize private health insurance and the public health benefit programs for which they are eligible.

Referral to Health Care and Community Resources

State agencies and non-profit organizations in 31 states are affiliates of the Help Me Grow National Center, which supports affiliates in maintaining directories of community resources available to families with children from birth to five years of age, supporting families via a centralized phone line for referrals to community resources, and providing developmental screening. Some states, such as Delaware and Indiana, have integrated Help Me Grow with their 2-1-1 community resource information line.

Several state Title V programs compile resources for families of CYSHCN on their websites. For example, the North Carolina CYSCHN program maintains a webpage that includes a listing of family support organizations that serve families in the state along with information about diagnosis and health care, health insurance and financial support, education resources, transition to adulthood, and advocacy and legal resources. To develop this resource listing, the CYSHCN program worked with a graduate student intern to determine which resources were important for families and to create a plan for keeping the page updated.

The organization Apoyo a Padres de Niños con Impedimentos (APNI) in Puerto Rico offers a searchable directory of specialist healthcare providers and resources for families of CYSHCN. Families can search by their location and type of provider, type of service, provider name, and provider ID. Provider listings include contact information, specialties, and accepted health insurance plans.

Care Coordination Tools for Families

Arizona’s Children and Youth with Special Health Care Needs (CYSHCN) Program has developed two documents that assist families in managing their child’s care. The first document, the Care Coordination Manual, is designed for use by physicians, nurses, therapists, care managers and care coordinators, and families. It provides information on resources, including an overview of systems of care with eligibility requirements, resources available for families, help with the transition to adulthood, and examples of letters of medical necessity. Approximately 400 CCMs are distributed annually. CHYSHCN Program partners with the Arizona Department of Education (ADE), Phoenix Children’s Hospital, and Raising Special Kids to disseminate the manual to families. The manual is also made available to community members and families at conferences and outreach events.

The second document, the Health Care Organizer (HCO), is intended to assist families of CYSHCN in managing the complex and multiple sources of information on services, treatment, and medical and behavioral health providers. The HCO is a portable toolkit that includes templates to manage health care information including: About Me, Dental Resources, Early Care-Education, Emergency Planning, Family History, Immunizations, Legal Options, My Insurance, Prescriptions, Providers, and Transition.  The HCO encourages families to manage their own health care information and records, leading to self-advocacy regarding their health care considerations. In 2019, 473 Health Care Organizers were disseminated to individuals and community providers.

Education for Families about Health Care Coverage and Systems of Services

Hilopa‘a, Hawai’i’s F2F, created an animated video to illustrate the content of a letter sent out by the Developmental Disabilities Division about changes to case management services during the COVID-19 pandemic. The short video explained how the case management program would continue via phone and video calls in an accessible, easy to understand format for families. The state shared the video and it was featured in the National Association of State Directors of Developmental Disability Services newsletter.

F2Fs in several states host webinars on healthcare financing for families raising CYSHCN. For example, Family Voices of Minnesota hosts monthly webinars for families that include topics such as Medicaid coverage and waivers, which are recorded and posted to the organization’s website. The PEAL Center, Pennsylvania’s F2F, frequently partners with the Pennsylvania Health Law Project (PHLP) to create webinars and training for families. The PHLP is a nonprofit organization that represents people who need help getting or keeping Medicaid, and they offer their expertise on waivers, appeal processes, and changes to Medicaid policies. Missouri’s F2F hosts talk-show style education sessions on a variety of financing topics for families.

To support children, youth, and families of CYSHCN, Idaho Title V staff started planning the development of a CYSHCN webpage for youth and families and a CYSHCN webpage for healthcare providers. Staff worked with IPUL to ensure alignment with their website and the services they offer to families. In September 2021, a Parent Focus Group was conducted with IPUL’s assistance to determine what should be included on the CYSHCN webpages. The focus group recommended the following six focus areas for both webpages: 1. Access to healthcare; 2. Medical home; 3. Dental home; 4. Care Coordination; 5. Healthcare transition; and 6. Training and resource organizations. These websites went live in 2022 and the CYSHCN Director receives contact from families regularly seeking care coordination assistance.

Family Support Organization Coalitions

The Delaware Title V program funds Delaware’s Family SHADE organization, a collaborative alliance of family partners and organizations committed to improving the quality of life for CYSHCN. Organizations and agencies that serve CYSHCN in Delaware, family members and guardians, and emerging adults with special health care needs can join Family SHADE. Members have access to trainings and seminars as well as mini grants and funding opportunities. Membership is free, and member organizations are listed on the Family SHADE website.

In Nebraska, a coalition called Disability Organizations Together Serving (DOTS) hosts monthly meetings for organizations to connect and share information. Examples of topics discussed at meetings include access to attorneys, guardianship, and retirement. DOTS also created a database of all participating organizations.

Culturally Appropriate Family Supports

Several F2Fs and state Title V/CYSHCN programs employ multilingual family navigators or support personnel. For example, Iowa has a large Marshallese-speaking population, so Title V has hired a Marshallese family support staff person to provide outreach to that community. The Oklahoma Title V program partners with the organization Family Support 360° Center, which provides support specifically to Spanish-speaking families.

Oklahoma’s F2F also employs a Native American Coordinator and Family Support Partner who assists Native American families in connecting to resources for burial, transportation, and financial assistance available through their Tribes.

Family Leadership Initiatives

Several states’ F2Fs, including Arizona’s, Iowa’s, Vermont’s, and Pennsylvania’s, hold family leadership institutes to train families in advocacy and participate in community service projects. These training institutes occur over three to eight overnight weekend sessions. Institute sponsors, including state Title V agencies, provide funds to cover hotel and meal costs for participants. Leadership institute sessions discuss topics such as disability justice and health equity, strategies for communicating with legislators, and personal leadership styles and skills. At the end of the program, the Vermont Developmental Disabilities Council holds a graduation ceremony for participants at the state house. Family members who participate are often called upon to engage in advocacy activities and serve on organization executive boards. North Dakota’s F2F hosts a similar program over one weekend.

Oklahoma’s F2F hosts an annual conference, titled Joining Forces: Supporting Family-Professional Partnerships. The conference brings together local, state and national leaders to discuss best practices in the area of family-professional partnerships. Participants gain knowledge and practical tools to use as they work together and have the opportunity to make connections with professionals, families and others for future partnership activities.

The Mississippi Title V agency has adopted a Family Engagement policy which defines levels of family engagement and started an MCH engagement committee that includes parents and family members of CYSHCN. These participants receive stipends for offering their time to provide input on programmatic and policy decisions.

Several state and local agencies, including local public health departments in Missouri, organize parent advisory committees and parent cafes as well as local adolescent groups that work to build youth leadership capacity.

Parents as Navigators and Peer Support

Several state Title V agencies and F2Fs offer peer-to-peer or parent navigator programs to provide families with support from an experienced family member. Agencies provide training to parent liaisons so that they are able to assist in navigating health care and insurance systems. In some states, they are located within pediatric practices, Federally Qualified Health Centers, or NICUs.

In addition to one-on-one parent navigators, several states offer opportunities for group support. Some F2Fs maintain private Facebook groups for parent support, and others host virtual or in-person support groups. In Montana, food and childcare are provided during the parent support groups. Mississippi’s Title V agency contracts with a local company to conduct focus groups around the state to identify where support groups are needed.

Mississippi’s Title V agency works with an organization that supports families who have adopted children with behavioral and emotional conditions. This organization hosts family engagement events and provides respite care for caregivers.