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.

For example, the Title V/CYSHCN programs in Alaska, Maryland, Minnesota, Missouri, and South Carolina connect families with their state F2F for information about health insurance options and other resources. The Kansas Title V/CSHCN program utilizes its partnership with the F2F to ensure families receive support around enrollment in private health insurance options. The Title V/CSHCN program in Arizona works with Raising Special Kids, the state F2F, to provide information and trainings for their staff on numerous topics, including public health benefit programs and Marketplace plans.

The Nevada Title V/MCH program collaborates with, and provides the bulk of funding for, Family TIES (the umbrella organization for family-led programs, including the F2F) to ensure families have needed information about health insurance options and other resources. Family TIES was a critical partner with the Title V/MCH program on the development of the Medical Home Portal in Nevada, which provides families with additional information and resources.

In Kentucky, the Commission for Children with Special Health Care Needs, the Title V/CSHCN program, refers new families to the F2F for help in navigating the complicated issues surrounding health care and making more informed choices by providing support, information, resources and training. The Kentucky F2F also has Support Parents that are trained to mentor other families of CYSHCN and matches parents with other parents of children that might have the same medical condition or need.

F2Fs also work directly with families to help them appeal insurance decisions. In Colorado, the F2F supports and coaches families who are appealing decisions made by Medicaid. Colorado F2F staff also chair a committee appointed by the State Legislature that reviews Medicaid provider rates. The Connecticut F2F also assists families in appealing insurance denials or connects them to organizations that can help them file appeals, as well as provides training and support to help families understand their health coverage. The one-on-one counseling that the New Hampshire F2F staff provides to families includes helping them assemble the types of documentation they need to appeal insurance decisions. Through participation on advisory committees, the staff at Texas Parent-to-Parent developed excellent relationships with the program staff of the Texas Medicaid Buy-in program and with the Managed Care Organizations in the state. When parents experience problems with Medicaid, the staff reaches out to their partners to help resolve the issue.

F2Fs also help facilitate policy changes that improve financing of care and coverage for CYSHCN.

The Delaware F2F facilitates a Parents’ Forum, a monthly phone call with representatives from Medicaid, the Managed Care Organizations, state service systems, providers, and parents. These calls are an opportunity for parents to talk about issues, requests for services that have been denied by payers, and other topics. As a result, policies have been changed and services have been added to the state plan after policymakers and providers learn how the existing policies affect families.

When New Hampshire Medicaid changed from fee-for-service to mandatory managed care, the Title V Special Medical Services (SMS) program developed a plan in partnership with the F2F/New Hampshire Family Voices to create a user-friendly publication that explained the Managed Care model and its framework for service delivery and financial accountability. Both SMS and New Hampshire Family Voices were invited to participate in New Hampshire’s Department of Health and Human Services (DHHS) transition team to ensure that children and adults who were previously exempt from managed care due to their special needs status understood the change. The transition team included a copy of the publication in the information packet that was sent to the 10,000 individuals with special health needs to support them in choosing a managed care organization.

F2F staff in Oregon serve on the state’s Medicaid Advisory Committee, appointed by the Governor, to represent families raising CYSHCN and to have the opportunity to speak up on behalf of families around Medicaid policies.