June 11, 2014

One in Five

One in Five Families with Children Has at Least One Child with Special Health Care Needs

Join Family Voices National Membership & Public Awareness Campaign & Make a Difference

En Espanol

Did You Know*?

  • More than one in five families has at least one child with special health care needs – 23% of families.
    Approximately 14.6 Million children ages 0-17 years in the US have special health care needs (SHCN). That’s nearly 20% (19.8%).
  • The health care needs of these children may be physical, developmental, behavioral or emotional and represent a wide range of conditions including autism, cerebral palsy, developmental delay, intellectual disabilities, depression, learning disabilities, and epilepsy.
  • Children with SHCN often have more than one condition and functional difficulties in more than one area that impacts their daily lives, such as breathing, communicating, chronic pain, learning, moving around, behavior, or challenges in making and keeping friends.
  • Their families typically experience greater stress, struggling to meet the needs of their child in a maze of multiple and complex systems of care.  Many families find that insurance is not adequate, care coordination is ineffective, and referrals are difficult. Families of children with SHCN are less likely to have family-centered health care.

Family Voices Makes a Difference:

  • Through our national office and 43 state affiliates, we directly impact the lives of children and youth with special health care needs and their families.
  • We provide information, training, and support to thousands of families and professionals throughout the country about current issues in health care—the Affordable Care Act, Medicaid, Family-Centered Care, Healthy Lifestyles for Children & Youth to Combat Obesity, Transition from Pediatric Care, Genetics, and more. 
  • We give families tools and information to make informed decisions about their children’s health care. Our national monthly and quarterly publications reach over 2,000 individuals.
  • We offer 1:1 family support, peer mentoring, and leadership development.
  • Our national office works at the federal level with Congress and others to ensure important programs are funded and that health policy is family-centered; our state affiliates impact programs and policies in their own states, ensuring that the voices of families are heard.

Join Us!

Become a member.  Membership costs range from $15 (students) to organizational memberships
based on budget size. Memberships for youth with disabilities under age 24 are free.
State affiliates retain 60% of each membership fee paid by members within their state.

One in Five - Get the Word Out!

Order and wear buttons at public events, information fairs, membership meetings, trainings and in your community.
Tell others about the One in Five families.

*Child and Adolescent Health Measurement Initiative (2013). “Who Are Children with Special Health Care Needs (CSHCN).” Data Resource Center, supported by Cooperative Agreement 1-U59-MC06980-01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Available at www.childhealthdata.org. Revised 4/15/13.