DataBank Indicator

Children with Special Health Care Needs

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About one in seven children in 2009-10 had a special health care need, according to their parent’s report.

Importance

The term, “children with special health care needs,” includes those with a broad range of chronic health conditions, from major physical or developmental disabilities to often less limiting conditions such as attention deficit disorder or asthma. One-quarter of children with special health care needs are, according to parents’ report, usually or always affected by their condition, while about one in three (35 percent) are never affected in their ability to do things that other children their age do. (Appendix 2) In 2000, children with special health care needs accounted for 34 percent of all health care costs among children, more than twice their share of the child population.[1]

The coordination of care, involving doctors, teachers, and community resources, can be challenging for parents of children with special health care needs. The required time commitment alone is substantial for some parents. More than one of every five children with special care needs (24 percent) has parents who spend at least five hours a week coordinating care.[2] 24 percent of children with special health care needs required at least one health service they did not receive in 2009-2010.[3] In addition, parents may have to schedule care at the last minute or miss work to care for their children. Fifty-one percent of children with special health care needs ages 5 to 17 missed at least four days of school due to illness. (Appendix 2) More than one-third of children with special health care needs in 2009-2010 had inadequate insurance, according to parents’ responses. In sum, parents may need help navigating a complex health care system. Indeed, more than one-fifth of parents of children with special health care needs report receiving help with coordination of care or services.[4] 

Trends109_fig1

The proportion of children reported to have special health care needs has increased since 2001, from 13 to 15 percent. (Figure 1)

Differences by Gender

A higher percentage of boys than girls have special health care needs as reported by their parents. In 2009-2010, 17 percent of males under the age of 18 had special health care needs, compared with 13 percent of females. (Figure 1)

Differences by Race and Hispanic Origin[5]

109_fig2In 2009-2010 the prevalence of parent-identified special health care needs differed by the child’s race and Hispanic origin. Black children were the most likely to have special health care needs, at 17 percent, followed by white children at 16 percent. Hispanic children were the least likely to have such needs, as reported in 2009-2010, but the reported prevalence among this group rose from 2005-2006, from eight to eleven percent. Data for Asian and Native American
children are not available for 2009-2010, but in 2005-2006, six and eleven percent, respectively, had special health care needs, by parental report. (Figure
2)

Differences by Age

109_fig3More children ages 6 to 11 and 12 to 17 have identified special health care needs (18 percent in each group) than do children ages birth to five (nine percent), in 2009-2010). (Figure 3) Some of this disparity is certainly due to the longer period of time in which special needs can become evident.

Differences by Poverty Level

In 2009-2010, parents of children in poverty were slightly more likely to report their having special health care needs than those who lived in households with incomes of at least 200 percent of the poverty level. (Appendix 1)

State and Local Estimates

The National Survey of Children with Special Health Care Needs Data Resource Center website allows users to generate their own state-level estimates from the 2001, 2005-2006, and 2009-2010 surveys. Users can select desired variables and subgroup breaks, such as age, gender, or race/ethnicity, to generate customized tables or figures.

The National Survey of Children with Special Health Care Needs Chartbooks include state profiles of children with special health care needs. Each profile includes the total number of such children for that state, as well as state-level and national estimates of prevalence and other related indicators. The chartbooks are available for 2001 and 2005-2006.

State-level estimates are also available at the KIDS COUNT Data Center.

International Estimates

None available.

National Goals

Through the Healthy People 2020 initiative, the federal government is aiming to increase the proportion youth with special
health care needs whose health care provider has discussed transition planning from pediatric to adult health care.

More detailed information is available here. (objective DH-5)

Related Indicators

Definition

To establish the presence of a child with special health care needs, the federal Maternal and Child Health Bureau asked parents the following survey questions:

  • Does the child currently need prescription medications?
  • Does the child need more medical care, mental health care, or educational services than his or her peers?
  • Is the child limited in his or her ability to do things?
  • Does the child need physical, occupational, or speech therapy?
  • Does the child have an emotional, developmental, or behavioral problem?

In follow-up after each question parents were asked whether the condition was expected to last for 12 months or more and whether the condition was due to a medical, behavioral, or other health condition. If the answer to one (or more) of the conditions was “yes,” and the answers to the follow up questions for that condition(s) were also
“yes,” then the child was considered to have special health care needs.

Data Source

  • Data for 2009-2010: National Survey of Children with Special Health Care Needs. Accessed at The Data Resource Center for Child and Adolescent Health. The Child and Adolescent Health Measurement Initiative. Available at http://childhealthdata.org/browse/survey.
  • Data for 2005-2006: Child Trends’ original analyses of data from the 2005-2006 National Survey of Children with Special Health Care Needs.
  • Data for 2001: The National Survey of Children with Special Health Care Needs Chartbook 2001, available at http://mchb.hrsa.gov/chscn/pages/prevalence.htm.

Raw Data Source

National Survey of Children with Special Health Care Needs

http://www.cdc.gov/nchs/slaits/cshcn.htm

http://www.childhealthdata.org

Appendix 1 – Children With Special Health Care Needs, as a Percentage of All Children Ages 0 to 17, by Selected Characteristics, 2001, 2005-2006, and 2009-2010

2001 2005-2006 2009-2010
Total 12.8 13.9 15.1
Gender
Male 15.0 16.1 17.4
Female 10.5 11.6 12.7
Age
0 to 5 7.8 8.8 9.3
6 to 11 14.6 16.0 17.7
12 to 17 15.8 16.8 18.4
Race/Ethnicity
Non-Hispanic white 14.2 15.5 16.3
Non-Hispanic black 13.0 15.0 17.5
Hispanic 8.5 8.3 11.2
Asian 4.4 5.6
American Indian/Alaska Native 16.5 11.1
Other 14.4 13.6
2001 2005-2006 2009-2010
Poverty level
at 100% or less of the poverty level 13.6 13.4 16.0
Between 100% and 200% of the poverty
level
13.6 16.3 15.4
Over 200% of the poverty level 13.1 14.5 14.6
Income not Reported 10.0
Type of limitation
Needs prescription medications 9.5 11.0 11.5
Needs elevated services 5.8 5.4 6.2
Has an emotional/ developmental/
behavioral problem
3.7 4.0 4.8
Limited in activities 3.0 3.5
Needs specialized therapies 2.2 2.4 3.2
Note: Types of
limitations are not mutually exclusive and do not add up to 100 percent, as
analysis identifies the percent of children with a given limitation.Source: Data for
2001: The National Survey of Children with Special Health Care Needs
Chartbook 2001: http://mchb.hrsa.gov/chscn/pages/prevalence.htm. Data for
2005-2006: Child Trends’ original analyses of data from the 2005-2006
National Survey of Children with Special Health Care Needs. Data for
2009-2010: National Survey of Children with Special Health Care Needs.
Accessed at The Data Resource Center for Child and Adolescent Health. The
Child and Adolescent Health Measurement Initiative. Available at
http://childhealthdata.org/browse/survey.

 

Appendix 2 – Percentage of Children with Special Health Care Needs Ages 0 to 17, by Selected Characteristics, 2001, 2005-2006, and 2009-2010

2001 2005-2006 2009-2010
Uninsured at any time in past
12 months
11.6 8.8 9.3
Type of insurance coverage1
Private 64.7 59.1 52.4
Public 21.7 28.0 35.9
Both
public and private
8.1 7.3 8.2
Other
comprehensive insurance
0.4 2.0
Uninsured 5.2 3.5 3.6
Does the child have a usual
source of health care?
Yes 90.6 95.5 89.3
No 9.4 4.5 10.7
How often child is affected
by the condition (in the past 12 months)
Never 37.5 34.4
Sometimes 40.6 40.6
Usually 8.3 9.8
Always 13.5 15.3
2001 2005-2006 2009-2010
How much the condition has
affected the child’s ability to do things
A
great deal
18.6 19.5 20.6
Some 45.5 43.7 44.9
Very
little
35.9 36.8 34.5
Number of days of school
missed due to injury/illness during the past 12 months
0
to 3
50.7 51.7 48.8
4
to 6
20.3 21.3 21.8
7
to 10
13.2 12.6 13.9
11
or more
15.8 14.3 15.5
1at time of surveyNote: Types of
limitations are not mutually exclusive and do not add up to 100 percent, as
analysis identifies the percent of children with a given limitation.Source: Data for
2001: The National Survey of Children with Special Health Care Needs
Chartbook 2001: http://mchb.hrsa.gov/chscn/pages/prevalence.htm. Data for
2005-2006: Child Trends’ original analyses of data from the 2005-2006
National Survey of Children with Special Health Care Needs. Data for
2009-2010: National Survey of Children with Special Health Care Needs.
Accessed at The Data Resource Center for Child and Adolescent Health. The
Child and Adolescent Health Measurement Initiative. Available at
http://childhealthdata.org/browse/survey.

 

Endnotes


[1] Newacheck, P. W., & Kim, S. E. (2005). A national profile of health care utilization and expenditures for
children with special health care needs. Archives of Pediatrics & Adolescent Medicine, 159(1), 10-17. Available at: http://archpedi.ama-assn.org/cgi/content/full/159/1/10

[2] The Data Resource Center for Child and Adolescent Health. (2009-10) The Child and Adolescent Health Measurement Initiative. Available at http://childhealthdata.org/browse/survey

[3] Ibid.

[4] Ibid.

[5]Hispanics may be of any race.

Suggested Citation:

Child Trends. (2012). Children with special health care needs. Available at: https://www.childtrends.org/?indicators=children-with-special-health-care-needs

Last updated: April 2012

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