Health Needs and Use of Services Among Children with Developmental Disabilities — United States, 2014–2018

Developmental delays, disorders, or disabilities (DDs) manifest in infancy and childhood and can limit a person’s function throughout life* (1–3). To guide strategies to optimize health for U.S. children with DDs, CDC analyzed data from 44,299 participants in the 2014–2018 National Health Interview Survey (NHIS). Parents reported on 10 DDs,^† functional abilities, health needs, and use of services. Among the approximately one in six (17.3%) U.S. children and adolescents aged 3–17 years (hereafter children) with one or more DDs, 5.7% had limited ability to move or play, 4.7% needed help with personal care, 4.6% needed special equipment, and 2.4% received home health care, compared with ≤1% for each of these measures among children without DDs. Children with DDs were two to seven times as likely as those without DDs to have taken prescription medication for ≥3 months (41.6% versus 8.4%), seen a mental health professional (30.6% versus 4.5%), a medical specialist (26.0% versus 12.4%), or a special therapist, such as a physical, occupational, or speech therapist, (25.0% versus 4.5%) during the past year, and 18 times as likely to have received special education or early intervention services (EIS) (41.9% versus 2.4%). These percentages varied by type of disability and by sociodemographic subgroup. DDs are common, and children with DDs often need substantial health care and services. Policies and programs that promote early identification of children with developmental delays and facilitate increased access to intervention services can improve health and reduce the need for services later in life.^§ Sociodemographic inequities merit further investigation to guide public health action and ensure early and equitable access to needed care and services.

The study included data from the 2014–2018 NHIS, an annual, multistage probability sample survey of the noninstitutionalized U.S. civilian population.^¶ In-person interviews were conducted to obtain information on household members. Among families with children, a child questionnaire was administered to a knowledgeable adult (usually, and hereafter parent) about a randomly selected child (aged 0–17 years). During 2014–2018, the response rate for the child questionnaire was 59.2%–66.6%.

Parents of children aged ≥3 years were asked about their child’s functional abilities, health needs, and use of services (Supplementary Box 1, https://stacks.cdc.gov/view/cdc/115478) (2–5), as well as whether their child had any of 10 specific types of DDs (Supplementary Box 2, https://stacks.cdc.gov/view/cdc/115479). Children could be included in multiple diagnostic types of DDs; however, children with co-occurring learning disabilities and intellectual disabilities were excluded from the learning disability category. Weighted prevalence estimates of DDs and 95% CIs were calculated. The weighted percentages of children with each measure of reported functional ability, health needs, and use of specialty health care providers or education services were estimated overall, by selected sociodemographic characteristics, number of DDs, and each type of DD. Differences in percentages were evaluated using Rao-Scott chi-square tests with p<0.05 considered statistically significant. To reflect the complex sampling design and generate nationally representative estimates, all analyses accounted for clustering, stratification, and weights, using SAS software (version 9.4; SAS Institute) and were verified using SUDAAN (version 11.0.1; RTI International).

Of the 44,866 children aged 3–17 years included in the 2014–2018 NHIS, 567 were excluded because of missing information on any question related to DDs or abilities, health needs, or use of services, resulting in a total of 44,299. The estimated prevalence of DDs among U.S. children aged 3–17 years was 17.3%, ranging from 0.2% (blindness) to 9.4% (attention-deficit/hyperactivity disorder) (Table 1); 6.7% of U.S. children had two or more DDs. Among children with DDs, 5.7% had limited movement or play abilities, 4.7% needed help with personal care, 4.6% needed special equipment, and 2.4% received home health care, compared with ≤1% of children without DDs. Children with DDs were two to seven times as likely as those without DDs to have taken prescription medication for ≥3 months (41.6% versus 8.4%), have seen a mental health professional (30.6% versus 4.5%), a medical specialist (26.0% versus 12.4%), or a therapist (25.0% versus 4.5%) during the past year (Table 1). Children with DDs were more likely to participate in special education or EIS (41.9% versus 2.4%). The percentage of children with limited abilities, special health needs, or who used specialty services was higher among children with two or more DDs than among those with one DD or none. Children with each type of DD were more likely than were those without DDs to have limited abilities or special health needs, or to use specialty services.

Among children with DDs, the percentage with limited abilities and special health needs, and who used specialty services varied across sociodemographic subgroups (Table 2). Compared with non-Hispanic White children with DDs, a lower percentage of non-Hispanic Black, non-Hispanic other, and Hispanic children with DDs took prescription medication. Compared with non-Hispanic White children with DDs, Hispanic children with DDs were less likely to have seen a mental health professional, and non-Hispanic Black and Hispanic children with DDs were less likely to have seen a medical specialist. Compared with children aged 3–8 years who had DDs, a lower percentage of children aged 9–17 years with DDs needed special equipment or help with personal care, received home health care, or saw a therapist, whereas a higher percentage took prescription medications or saw a mental health professional.

Among children with DDs, those whose mother had less than a high school education were less likely to take prescription medication or to see specialty health care professionals, but more likely to receive special education or EIS. Compared with children living above the federal poverty level, those living at or below the federal poverty level were less likely to see a medical specialist and more likely to receive special education or EIS. The percentage of children with DDs who needed help with personal care or received home health care and used services was higher in the Northeast and West than in the South; a higher percentage in the Midwest saw a mental health professional or therapist, and a lower percentage in the West took prescription medications for ≥3 months. The percentage of children with DDs who took prescription medication for ≥3 months, saw medical specialists, or received special education or EIS services was lower among those without health insurance.

Acknowledgments

Benjamin Zablotsky, National Center for Health Statistics, CDC; Lauren Ramos, Health Resources Services Administration; Julia Abercrombie, National Center on Birth Defects and Developmental Disabilities, CDC; Ana Penman-Aguilar, Office of Minority Health and Health Equity, CDC.

Corresponding author: Mary E. Cogswell, mcogswell@cdc.gov, 770-488-8053.

¹Division of Human Development and Disability, National Center on Birth Defects and Developmental Disabilities, CDC; ²Georgia State University, Atlanta, Georgia.

References

1. Zablotsky B, Black LI, Maenner MJ, et al. Prevalence and trends of developmental disabilities among children in the United States: 2009–2017. Pediatrics 2019;144:e20190811. https://doi.org/10.1542/peds.2019-0811 PMID:31558576
2. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among US children, 1997–2005. Arch Pediatr Adolesc Med 2009;163:19–26. https://doi.org/10.1001/archpediatrics.2008.506 PMID:19124699
3. Schieve LA, Gonzalez V, Boulet SL, et al. Concurrent medical conditions and health care use and needs among children with learning and behavioral developmental disabilities, National Health Interview Survey, 2006–2010. Res Dev Disabil 2012;33:467–76. https://doi.org/10.1016/j.ridd.2011.10.008 PMID:22119694
4. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics 1998;102:137–9. https://doi.org/10.1542/peds.102.1.137 PMID:9714637
5. Bethell CD, Blumberg SJ, Stein REK, Strickland B, Robertson J, Newacheck PW. Taking stock of the CSHCN screener: a review of common questions and current reflections. Acad Pediatr 2015;15:165–76. https://doi.org/10.1016/j.acap.2014.10.003 PMID:25486969
6. Twardzik E, Cotto-Negrón C, MacDonald M. Factors related to early intervention Part C enrollment: a systematic review. Disabil Health J 2017;10:467–74. https://doi.org/10.1016/j.dhjo.2017.01.009 PMID:28187953
7. Spencer DL, McManus M, Call KT, et al. Health care coverage and access among children, adolescents, and young adults, 2010–2016: implications for future health reforms. J Adolesc Health 2018;62:667–73. https://doi.org/10.1016/j.jadohealth.2017.12.012 PMID:29599046
8. Rosen-Reynoso M, Porche MV, Kwan N, et al. Disparities in access to easy-to-use services for children with special health care needs. Matern Child Health J 2016;20:1041–53. https://doi.org/10.1007/s10995-015-1890-z PMID:26728898
9. Lipkin PH, Macias MM, Norwood KW Jr, et al.; Council on Children with Disabilities, Section on Developmental and Behavioral Pediatrics. Promoting optimal development: identifying infants and young children with developmental disorders through developmental surveillance and screening. Pediatrics 2020;145:e20193449. https://doi.org/10.1542/peds.2019-3449 PMID:31843861
10. Zablotsky B, Maenner MJ, Blumberg SJ. Geographic disparities in treatment for children with autism spectrum disorder. Acad Pediatr 2019;19:740–7. https://doi.org/10.1016/j.acap.2019.02.013 PMID:30858082

Abbreviations: ADHD = attention-deficit/hyperactivity disorder; DDs = developmental delays, disorders, or disabilities; EIS = early intervention services.
* Weighted estimates and 95% CIs account for the complex survey design.
^† Unweighted number of children; children might have more than one DD, except as indicated.
^§ A physical therapist, speech therapist, respiratory therapist, audiologist, or occupational therapist.
^¶ Children whose parents answered affirmatively to questions for one or more of the 10 conditions listed in the table, regardless of the number of conditions reported.
** Does not sum to percentage of children with any DD because of rounding.
^†† Potentially unreliable estimates based on a relative standard error ≥30% and <50%.
^§§ Children with both intellectual disability and learning disability were not included in the estimate of children with learning disability.

Abbreviations: DDs = developmental delays, disorders, or disabilities; EIS = early intervention services; FPL = federal poverty level; GED = general educational development certificate; HS = high school; NA = not applicable.
* Children whose parents answered affirmatively to questions for one or more of 10 selected conditions (attention-deficit/hyperactivity disorder, autism spectrum disorder, blindness, cerebral palsy, moderate to profound hearing loss, learning disability, intellectual disability, seizures, stuttering, or other DD), irrespective of the number of conditions reported (7,717).
^† Weighted estimates and 95% CIs account for the complex survey design.
^§ The unweighted number of children with any DD in the specified demographic group.
^¶ A physical therapist, speech therapist, respiratory therapist, audiologist, or occupational therapist.
** p–value for Rao-Scott chi-square test for difference in percentages among subgroups.
^†† Potentially unreliable estimates based on a relative standard error ≥30% and <50%, or comparison based on a group with an unreliable estimate.
^§§ Significantly different from non-Hispanic White children (p<0.05; Rao-Scott chi-square test).
^¶¶ Significantly different from children aged 3–8 years (p<0.05; Rao-Scott chi-square test).
*** Ratio of family income to FPL.
^††† Midwest: Kansas, Illinois, Indiana, Iowa, Michigan, Minnesota, Missouri, Nebraska, North Dakota, Ohio, South Dakota, and Wisconsin; Northeast: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont; South: Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia; and West: Alaska, Arizona, California, Colorado, Hawaii, Idaho, Montana, Nevada, New Mexico, Oregon, Utah, Washington, and Wyoming.
^§§§ Significantly different from children living in the South (p<0.05; Rao-Scott chi-square test).
^¶¶¶ Any health insurance coverage at the time of the interview under private health insurance. Medicare, Medicaid, State Children’s Health Insurance Program, a state-sponsored health plan, other government programs, or military health plan (includes TRICARE, Veterans Affairs, and Civilian Health and Medical Program of the Department of Veterans Affairs).
**** Unreliable estimate based on a relative standard error ≥50% or comparison based on a group with an unreliable estimate are not shown.