NSCH Data Brief Children Youth Special Health Care Needs

Children and Youth with Special Health Care Needs
NSCH Data Brief | June 2022
ABOUT THE NSCH The Maternal and Child Health Bureau (MCHB) has a core responsibility to monitor and
improve services for children and youth with special health care needs (CYSHCN)–
defined as those who have or are at increased risk for a chronic physical, developmental,
The Health Resources and Services behavioral, or emotional condition and who also require health and related services of
Administration’s (HRSA) Maternal a type or amount beyond that required by children generally.1 The National Survey of
and Child Health Bureau (MCHB) Children’s Health (NSCH) identifies CYSHCN through a validated 5-item screener that
funds and directs the National asks parents/caregivers if their child has any of the following service needs or limitations
Survey of Children’s Health (NSCH), due to a health condition that has lasted or is expected to last 12 months or longer:
which the U.S. Census Bureau 9 Need or use of prescription medication(s)
conducts. 9 Elevated need or use of medical care, mental health, or education services
9 Functional limitation(s) (that limit daily activity)
The NSCH is the largest national-
9 Need or use of special therapies (e.g. physical, occupation, or speech therapy)
and state-level survey on the health
9 Emotional, developmental, or behavioral problem for which treatment or counseling
and health care needs of children
is needed
ages 0-17, their families, and their
communities. Prevalence of Special Health Care Needs
It is an annual household survey • In 2019-2020, nearly 1 in 5 children (19.4%) in the United States had a special health
completed by a parent or guardian, care need, representing 14.1 million children. More than 1 in 4 households with
either by web or paper and pencil. children (28.6%) had at least one CYSHCN.
• Special health care needs were slightly more common among non-Hispanic Black
Combining multiple years of
children (23.3%) and children living in poverty (22.8%).
data enables more reliable
• More than 1 in 3 children with multiple adverse childhood experiences known as ACEs
estimates, especially for smaller
(36.3%) had a special health care need. ACEs are potentially traumatic childhood
subpopulations. In 2019-2020,
events, such as economic hardship, parental death or incarceration, witnessing
parents completed questionnaires
domestic violence, or living with anyone struggling with mental illness. Research
for 72,210 children of whom 17,065
shows ACEs have a strong relationship with poor health outcomes.2
had a special health care need.
All estimates presented in this Prevalence of CYSHCN by ACEs, 2019-2020
brief are weighted to represent the
36.3%
population of U.S. children living in 21.0%
households.
13.7%
Access NSCH Data

No ACEs 1 ACE 2+ ACEs
1
A New Definition of Children With Special Health Care Needs
2
CDC: Adverse Childhood Experiences
Type of Special Health Care Needs
• CYSHCN are a diverse group who may experience varying Type of Special Health Care Needs
degrees of health care needs and functional limitations. among CYSHCN, 2019-2020
• In 2019-2020, one in four CYSHCN (25.5%) experienced
25.5% Functional limitations
functional limitations either alone or in combination with
some other health care need. Elevated service and
26.7% prescription medication(s)
• Nearly half (47.3%) of CYSHCN required elevated services
without a functional limitation. Over a quarter also needed
20.6% Elevated service ONLY
prescription medications (26.7%) and 20.6% did not.
• More than a quarter (27.2%) of CYSHCN only required
27.2% Prescription medication(s) ONLY
a prescription medication and did not have functional
limitations or use extra services.
Unmet Health Care Needs

• CYSHCN are more likely than non-CYSHCN to experience unmet health care needs, defined as needing
but being unable to receive health care for any reason.
• In 2019-2020, CYSHCN were nearly four times as likely to have unmet health care needs in the past year
compared to non-CYSHCN (8.8% v. 2.3%). CYSHCN were also more likely than non-CYSHCN to have
unmet needs across every type of care (medical, dental, vision, hearing, mental, and other) with the widest
gap for mental health care (4.2% v. 0.4%).
• Among CYSHCN who experienced an unmet health need, the most commonly reported reasons were related
to cost (48.9%) and appointment availability (53.9%).
Percent of Children with Unmet Health Care Needs by CYSHCN Status,

8.8% 2019-2020
4.2%
2.9% 2.7%
2.3%
1.8%
1.4% 1.1%
0.8% 0.6% 0.8%
0.4% 0.2%
0.1%
Any Unmet Need Medical Care Dental Care Vision Care Hearing Care Mental Health Care Other
Special Health Care Needs No Special Health Care Needs

Effective Systems of Care for CYSHCN
HRSA MCHB, together with its partners, has identified six foundational components for an effective system of care
for CYSHCN: 1) children are screened early and continuously for special health care needs (captured by receipt of
preventive medical and dental care), 2) families of CYSHCN are partners in decision-making, 3) community-based
services are organized so families can use them easily (captured by no difficulties accessing services), 4) CYSHCN
receive care in a medical home, 5) there is adequate insurance and funding to cover services, and 6) CYSHCN
receive services necessary to make transitions to adult health care.
• In 2019-2020, only 14.4% of CYSHCN received all six components of a well-functioning system of care.
• While over 80% of CYSHCN and their families did not have difficulties accessing services (86.9%) and were
partners in decision-making (81.6%), less than two-thirds had adequate insurance to cover needed services
(62.5%), less than half (42.2%) received care in a medical home, and less than a quarter of CYSHCN ages 12-
17 years received adult health care transition planning (22.5%).
Percent of CYSHCN Meeting Components of Well-Functioning System of Care, 2019-2020
Total (all components) 14.4%
No difficulties accessing services 86.9%
Partners in shared decision making 81.6%
Received preventive medical and dental care 74.4%
Adequate insurance 62.5%
Received care in a medical home 42.2%
Received health care transition planning 22.5%
In 2022, HRSA MCHB released a Blueprint for Change: A National Framework for a System of Services for Children and Youth with
Special Health Care Needs, which builds on the foundation of the six core outcomes with a lens of equity, quality of life, access to
services, and financing of services. Please visit the MCHB CYSHCN Focus Area webpage to access the Blueprint for Change and
HRSA MCHB’s investments in effective systems of care for all CYSHCN.
For more information about HRSA’s Maternal and Child Health Bureau, visit mchb.hrsa.gov.

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Children and Youth with Special Health Care Needs

NSCH Data Brief | June 2022

Access NSCH Data

Unmet Health Care Needs

Percent of Children with Unmet Health Care Needs by CYSHCN Status,

Special Health Care Needs No Special Health Care Needs

Percent of CYSHCN Meeting Components of Well-Functioning System of Care, 2019-2020

Total (all components) 14.4%

No difficulties accessing services 86.9%

Partners in shared decision making 81.6%

Received preventive medical and dental care 74.4%

Adequate insurance 62.5%

Received care in a medical home 42.2%

Received health care transition planning 22.5%

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