“Idaho Parents Unlimited (IPUL) has been such an amazing help. When my son was diagnosed with autism, I had no idea where to start and IPUL was able to tell me what steps I needed to take and how to do it. Without IPUL, I don’t think I could have done it.”  – a Parent

“We certainly would not have known where to begin without the assistance of the F2F.”  -a Parent

When this family was planning for their son’s future, the staff at the F2F in Nebraska provided step-by-step guidance, and explained the differences in each program and the supports available for their son. Staff also provided referrals to attorneys so the family could learn about guardianship.

“Being in the school counseling profession for 22 years, I reach out to many different resources in the community. Over the years, my go-to resource is the F2F, South Dakota Parent Connection. It provides a wealth of resources from workshops, training, and materials for both families and myself as a professional. I value the South Dakota Parent Connection so much that, as an instructor in the SD State University Counseling Department, I use the information and materials that it has made available in the graduate level classroom!” – a Professional

» What are F2Fs?

Family-to-Family Health Information Centers (F2Fs) are family-led centers funded by the Health Resources and Services Administration (HRSA). There is one F2F in each statein the District of Columbia, in five U.S. territories, and there are three F2Fs serving tribal communities. Each F2F is staffed by highly-skilled, knowledgeable family members who have first-hand experience and understanding of the challenges faced by families of CYSHCN. These uniquely qualified staff provide critical support to families caring for CYSHCN, particularly families of children with complex needs and those from diverse communities.

F2Fs also assist providers, state and federal agencies, legislators, and other stakeholders to better understand and serve CYSHCN and their families.

» Who are CYSHCN?

Children and Youth with Special Health Care Needs (CYSHCN) are children and youth who have or are at increased risk for chronic, physical, developmental, behavioral, or emotional conditions and who also require health and related services beyond that required by children generally(1).

  • 68% have 2 or more health conditions
  • 45.5% have health conditions that affect their daily activities
  • 37.5% require specialized medical care
  • 33.2% require mental health care
  • 47.2% needed mental/behavioral health care but did not receive it (2)

» Why Do Families of CYSHCN Need Special Help?

When a family learns their child has special health care needs, they face frightening prognoses and complex challenges: a maze of programs with different eligibility requirements, policies, and procedures; demands of providing home health care for their child, dispensing medications, managing equipment, and carrying
out therapies; extraordinary expenses for deductibles, co-pays, and un-covered medical expenses; lost income from the need to cut back work hours to care for their child; re-navigating new programs as a child’s needs change. 

» How Do F2Fs Help Families?

In FY2017, F2Fs reached and provided information to almost 1 million families.  Each F2F provides free, 1:1 assistance to families, helping them:

Find appropriate care and services
Apply for Medicaid, CHIP, or private insurance
• Get referrals to providers
• Address insurance denials
• Identify and access community support programs
• Advocate to ensure effective and cost-efficient care
• Connect with parent mentors

» How Do F2Fs Help Providers and Systems?

F2Fs also work with health care professionals, hospitals, and public agencies to help them better meet the needs of CYSHCN and their families. They most often request assistance for:
• Obtaining help for a patient/family
• Addressing changes to state policies and programs
• Learning about family experiences
• Partnering to improve services

Sources:

  1. McPherson M, Arango P, Fox H, et al. “A new definition of children with special health care needs.” Pediatrics, 1998; 102: 137 – 140.
  2. Child and Adolescent Health Measurement Initiative. Data Resource Center for Child and Adolescent Health. 2016 National Survey of Children’s Health (NSCH) data query. Retrieved 11/17/2017 from www.childhealthdata.org. CAHMI: www.cahmi.org.