The State of Children With Disabilities and Special Health Care Needs
Children and youth with disabilities are a highly diverse group representing many conditions and identities — from learning disabilities and emotional and behavioral diagnoses to special health care needs. These young people contribute in positive ways to their families, schools, communities and eventually — in adulthood — to their employers. At the same time, these children are also more likely to experience challenges socially, emotionally, academically and in other areas. In turn, the adults in their lives are more likely to experiences stress related to their careers, family finances and caregiving duties.
This post explores the experiences of children who have disabilities or special health care needs and examines how they are supported and where current approaches may be falling short.
Children With Special Health Care Needs
In 2019–2020, 19% of kids living in the United States — more than 14 million children total — had special health care needs, according to a 2022 summary of the Maternal and Child Health Bureau’s National Survey of Children’s Health. Children within this group are more likely to experience chronic physical, developmental, behavioral or emotional conditions and require added care and services. The same survey also found that:
- Close to 30% of U.S. households with children have at least one child with a special health care need.
- Special health care needs are more common among children who live in poverty and rely on public health insurance when compared to children without such needs.
- Among kids ages 3 to 17 with special health care needs, more than half (56%) have a current mental health or behavioral diagnosis, such as ADHD, depression or anxiety.
Students With Disabilities
In the U.S. public school system in 2021–22, more than 7 million students ages 3 to 21 received special education services for disabilities, according to the National Center for Education Statistics. Since 2010-11, this total has increased by nearly one million students and jumped from representing 13% to 15% of the total public school student population.
The most prevalent disabilities among students receiving special education services in 2021–22 were:
- specific learning disabilities (32%);
- speech or language impairments (19%);
- other health impairments — a category that includes conditions like asthma, diabetes and epilepsy (15%); and
- autism (12%).
Other less common disabilities include developmental delays, intellectual disabilities, emotional disturbances, multiple disabilities, hearing impairments, orthopedic impairments, visual impairments, traumatic brain injuries and deaf-blindness.
Disparities by race and ethnicity exist in the 2021–22 dataset:
- The share of U.S. students receiving special education for disabilities was highest for American Indian or Alaska Native (19%) and Black (17%) students.
- Among all special education students ages 14 to 21 who exited school in 2020–21, 75% graduated with a regular high school diploma. This outcome was less likely for American Indian or Alaska Native (69%), Black (71%), Latino or Hispanic (72%) and Pacific Islander (72%) students as well as students of multiple racial backgrounds (74%).
These findings indicate that children and youth of color who have disabilities are experiencing greater hurdles to academic success. Policymakers, schools, community partners, funders and other stakeholders must look to strengthen support for these children to ensure that that they have equitable opportunities to thrive.
Where the System of Care Falls Short
Children, youth and families who experience special health care needs face too many barriers to medical care and support services. Consider the following from the National Survey of Children’s Health:
- Children and youth in this category were nearly four times as likely to have unmet care needs when compared to their peers.
- The most common reasons for unmet needs were related to cost and appointment availability.
- Fewer than 2 in 3 kids with special needs had adequate health insurance to cover the services needed.
- Fewer than one in four youth with special needs, ages 12 to 17, received transition planning services for adult health care.
Overall, more than 4 in 5 children and youth with special needs — 85% of the population in focus — were not receiving services in a well-functioning system of care. Such a system should include the following components, according to the federal Maternal and Child Health Bureau:
- Children are screened early and continuously for special health care needs.
- Families are partners in decision-making.
- Community-based services are organized so families can use them easily.
- Children and youth with special health care needs receive care in a medical home.
- Insurance and funding are adequate to cover services.
- Youth with special health care needs receive services necessary to make transitions to adult health care.
Improving Outcomes for Children With Chronic Conditions
In response to these findings, the Maternal and Child Health Bureau — in partnership with experts, families and others — has released a national Blueprint for Change that envisions an improved system of services for children and youth. The publication describes next steps and strategies designed to help all children and youth with special health care needs thrive from childhood through adulthood. It focuses on four critical areas:
- quality of life;
- access to services; and
- financing of services.
Resources on Supporting Children With Disabilities and Special Needs
- Students With Disabilities Data Summary by the National Center for Education Statistics
- Support for Families of Children With Disabilities
- Family Voices support network
- National Center for Learning Disabilities
- The Catalyst Center