Agency for Healthcare 

Medical Expenditure Panel Survey Research and Quality 

STATISTICAL BRIEF #75 

April 2005 

Access to Needed Medical Care among 

Children under 18 Years of Age with 

Special Health Care Needs, 2002 

Frances M. Chevarley, PhD 

Introduction 

The quality of the health care received by children in America is an 

issue of public policy concern for several reasons. First, the quality of 

the health care delivery system is critical for maintaining the health 

and well-being of children. In addition, all children may not be 

receiving care equally. Following subgroups of children over time can 

provide information about whether greater equity has been achieved 

or whether serious gaps remain. Because the Agency for Healthcare 

Research and Quality (AHRQ) was mandated to measure health 

care quality for a National Healthcare Quality Report starting in 2003, 

a variety of health status measures (including the children with 

special health care needs screener questionnaire) and quality of care 

measures were added to the Household Component of the Medical 

Expenditure Panel Survey (MEPS-HC) in 2000. 

This Statistical Brief examines the quality of health care for children 

with and without special health care needs (SHCN) as it pertains to 

getting needed care in 2002. The estimates provided in the brief 

reflect getting needed care as it is defined and reported by the parent 

or knowledgeable adult respondent to the 2002 MEPS-HC. 

The following quality measures are examined for each child in the 

family: 1) whether or not the child had an illness, injury, or condition 

that needed care right away from a clinic, emergency room or 

doctor’s office, and how timely those needs were met; 2) whether or 

not the child went to a doctor’s office or clinic; needed care, tests, or 

treatment; and the extent of the problem in receiving the needed 

care, tests, or treatment; and 3) whether or not the child needed to 

see a specialist and the extent of the problem in getting a referral to 

a specialist. Only differences that are statistically significant at the 

0.05 level are discussed in the text.

Findings 

In 2002, there were an estimated 72.7 million children less than 18 

years of age in the U.S. civilian noninstitutionalized population. Of 

these children, an estimated 19.4 percent (14.1 million children) were 

reported as having special health care needs (SHCN). While children 

Highlights 

� While children with special 

health care needs comprise 

19.4 percent of all children in 

2002, they accounted for 

44.9 percent of all children’s 

total expenditures for health 

care. 

� A larger percentage of 

children with special health 

care needs than of children 

without special health care 

needs needed care right 

away (36.6 percent versus 

23.6 percent).

� Of those children needing 

care right away, the percentage always receiving the 

needed care as soon as they 

wanted was lower for children with special health care 

needs than for children without special health care needs 

(72.7 percent versus 79.5 

percent). 

� Children with special health 

care needs were almost four 

times as likely as children 

without special health care 

needs to have doctors or 

parents think they needed to 

see a specialist (42.6 percent versus 11.5 percent). 

� Of children needing to see a 

specialist, those with special 

health care needs were less 

likely to have parents report 

not having a problem in getting a referral to a specialist 

than children without special 

health care needs (72.8 percent versus 78.6 percent). 
with special health care needs comprise 19.4 percent of all children, they accounted for 44.9 percent of all 

children’s total expenditures for health care (data not shown). 

Needing care right away and getting it as soon as wanted 

Overall, 26.2 percent of children under age 18 were reported to have an illness, injury, or condition that 

needed care right away from a clinic, emergency room, or doctor’s office (figure 1). An estimated 77.6 

percent of these children had parents report that they always received care as soon as wanted (figure 2). 

Children with SHCN were more likely than children without SHCN to have their parents report their having 

an illness, injury, or condition that needed care right away (36.6 percent and 23.6 percent, respectively) 

(figure 1). Although more likely than children without SHCN to have parents report their need for care 

right away, children with SHCN were slightly less likely than children without SHCN to have parents report 

they always received the needed care as soon as wanted (72.7 percent and 79.5 percent, respectively) 

(figure 2). 

Problems receiving needed care 

An estimated 76.6 percent of children under age 18 were reported to have one or more visits to a doctor’s 

office or clinic in the last 12 months (figure 3); and of these children, an estimated 53.9 percent had 

parents or doctors who believed the children needed care, tests, or treatments (figure 4). Of these 

children with visits and whose parents or doctors thought they needed care, tests, or treatments, getting 

the necessary care was reported as a big problem for 3.5 percent of children, a small problem for 8.0 

percent, and not a problem for 88.5 percent (figure 5). 

When analyzing these data by SHCN status, children with SHCN were more likely than children without 

SHCN to have one or more doctor’s visits in the last 12 months (90.2 percent versus 73.2 percent) (figure 

3); and of children with visits, those with SHCN were more likely than those without SHCN to have their 

parents or doctors believe they needed care, tests, or treatments (76.8 percent versus 46.8 percent) 

(figure 4). Of children with visits and whose parents or doctors believed they needed care, tests, or treatments, those with SHCN were more than twice as likely as children without SHCN to have their parents 

report a big problem in receiving the necessary care (5.6 percent versus 2.6 percent) and were less likely 

to have their parents report not having a problem in receiving the necessary care (83.6 percent versus 

90.7 percent) (figure 5). 

Problems in getting a referral to a specialist 

Specialists are doctors like surgeons, allergy doctors, skin doctors, and others who specialize in one area 

of health care. Overall, 17.7 percent of children under age 18 had a reported need to see a specialist in 

the last 12 months (figure 6). Many health insurance plans require a referral from a primary care provider 

before a specialist can be seen. Of those children needing to see a specialist, getting a referral was 

reported as not a problem for 75.8 percent of all children (figure 7). 

Children with SHCN were almost four times as likely as children without SHCN to have parents report 

they needed to see a specialist (42.6 percent versus 11.5 percent) (figure 6). Of children needing to see a 

specialist, those with SHCN were less likely than children without SHCN to have parents report not having 

a problem in getting a referral to a specialist, though the difference was not large (72.8 percent and 78.6 

percent, respectively) (figure 7). 

Data Source 

Data presented in this Statistical Brief are drawn from the MEPS-HC 2002 Full Year Consolidated Data 

File (HC-070). The quality of care questions and the children with SHCN instrument are contained in the 

Child Health and Preventive Care section of the 2002 MEPS-HC. Specific item nonresponse rates for the 

quality measures were less than .01 percent. 

Definitions 

Children with special health care needs 

Studying health care needs and quality of care for children with chronic conditions has always been 

difficult due to the low prevalence of most health conditions for children and resulting small sample sizes 

in national surveys (Perrin, 2002; Bethell et al., 2002; Mangione-Smith and McBlynn, 1998). To address 
this problem, a standard definition of children with special health care needs was developed (Bethell et 

al., 2002; McPherson et al., 1998) and operationalized into a children with SHCN screener questionnaire 

(Bethell et al., 2002). This screener was included in the MEPS-HC Parent Administered Questionnaire (PAQ) 

in 2000 and has been in the Child Health and Preventive Care section of MEPS-HC since 2001. 

The children with SHCN screener questionnaire consists of a series of question-sequences for each of 

five health domains (Bethell et al., 2002): 1) the need or use of medicines prescribed by a doctor; 2) the 

need or use of more medical care, mental health, or education services than is usual for most children; 3) 

being limited or prevented in doing things most children can do; 4) the need or use of special therapy 

such as physical, occupational, or speech therapy; and 5) the need or use of treatment or counseling for 

emotional, developmental, or behavioral problems. Children with positive responses to at least one of the 

five health domains, along with all of the follow-up questions for that domain, were identified as having an 

SHCN. Children with a “no” response for at least one question for each of the five domains were considered not to have an SHCN. Those children whose “special health care need” status could not be 

determined (due to missing data for some of the questions) were coded as unknown SHCN status (0.85 

percent of children in 2002). 

Needing medical care 

Children’s health care quality measures were included in the 2000 PAQ and have been in the Child 

Health and Preventive Care section of MEPS-HC since 2001. These quality measures were taken from 

the health plan version of CAHPS®, an AHRQ-sponsored family of survey instruments designed to 

measure quality of care from the consumer’s perspective. The PAQ was and the Child Health and 

Preventive Care section is administered in the second half of the respective year. All of the questions 

refer to events experienced in the last 12 months. 

The following quality measures are examined for each child in the family: 1) whether or not the child had 

an illness, injury, or condition that needed care right away from a clinic, emergency room or doctor’s 

office, and how timely those needs were met; 2) whether or not the child went to a doctor’s office or clinic; 

needed care, tests, or treatment; and the extent of the problem in receiving the needed care, tests, or 

treatment; and 3) whether or not the child needed to see a specialist and the extent of the problem in 

getting a referral to a specialist. 

More information about the 2000–2002 children’s CAHPS® questions in the MEPS-HC and any changes 

to these variables are contained in the documentation for the respective year’s MEPS-HC public use file. 

More information about CAHPS® can be obtained through the CAHPS® Web site (www.cahps-sun.org) 

or on the AHRQ Web site (www.ahrq.gov). 

About MEPS-HC 

MEPS-HC is a nationally representative longitudinal survey that collects detailed information on health 

care utilization and expenditures, health insurance, and health status, as well as a wide variety of social, 

demographic, and economic characteristics for the civilian noninstitutionalized population. It is cosponsored by the Agency for Healthcare Research and Quality and the National Center for Health Statistics. 

For more information about MEPS, call the MEPS information coordinator at AHRQ (301-427-1656) or 

visit the MEPS Web site at http://www.meps.ahrq.gov/. 

References 

Bethell, C. D., Read, D. S., Stein, R. E. K., Blumberg, S. J., Wells, N., and Newacheck, P. W. Identifying 

children with special health care needs: Development and evaluation of a short screening instrument. 

Ambulatory Pediatrics, January-February 2002: Vol. 2, No. 1:38–48. 

Mangione-Smith, R. and McGlynn, E.A. Assessing the quality of health care provided to children. Health 

Services Research, October 1998: 33(4 Pt 2):1059–90. 

McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., Perrin, J. M., 

Shonkoff, J. P., and Strickland, B. A new definition of children with special health care needs. Pediatrics, 

July 1998: 102(1Pt 1):137–40. 
Perrin, J. M. Health services research for children with disabilities. Milbank Quarterly, 2002, Vol. 80, No. 

2:303–324. 

For a detailed description of the MEPS-HC survey design, sample design, and methods used to minimize 

sources on nonsampling error, see the following publications: 

Cohen, J. Design and Methods of the Medical Expenditure Panel Survey Household Component. 

Rockville (MD): Agency for Health Care Policy and Research, 1997. MEPS Methodology Report No. 1. 

AHCPR Pub. No. 97-0026. 

Cohen, S. B. Sample Design of the 1997 Medical Expenditure Panel Survey Household Component. 

Rockville (MD): Agency for Healthcare Research and Quality, 2000. MEPS Methodology Report No. 11. 

AHRQ Pub. No. 01-0001. 

Cohen, S. Design strategies and innovations in the Medical Expenditure Panel Survey. Medical Care, 

July 2003: 41(7) Supplement: III-5–III-12. 

Suggested Citation 

Chevarley, F. M. Access to Needed Medical Care among Children under 18 Years of Age with Special 

Health Care Needs, 2002. Statistical Brief #75. April 2005. Agency for Healthcare Research and Quality, 

Rockville, Md. http://meps.ahrq.gov/mepsweb/data_files/publications/st75/stat75.pdf 
Figure 1. Percentage of children <18 who needed care right away 

from a clinic, emergency room, or doctor’s office in the 

last 12 months, by SHCN status, 2002 

23.6 

36.6 

26.2 

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

Figure 2. Among children <18 who needed care right away in 

illness/injury/condition as soon as wanted, by SHCN status, 2002 

79.5 

72.7 77.6 

14.9 13.2 19.1 

8.2 

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

usually sometimes/never 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

the last 12 months, percentage distribution of getting care for an 

7.5 7.3 

always 
visit (excluding emergency rooms) in the last 12 months, 

by SHCN status, 2002 

73.2 

90.2 

76.6 

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

Figure 3. Percentage of children <18 who had a doctor’s office or clinic 

needed care, tests, or treatment, by SHCN status, 2002 

46.8 

76.8 

53.9 

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

Figure 4. Among children <18 who had a doctor’s office or clinic visit 

in the last 12 months, percentage that parent or doctor believed child 
problems in receiving necessary care, by SHCN status, 2002 

90.7 

83.6 88.5 

8.0 6.7 10.7 

2.6 5.6 

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

not a problem a small problem a big problem 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

Figure 5. Among children <18 who had a doctor’s office or clinic visit in 

the last 12 months and who needed care, percentage distribution of 

3.5 

needed to see a specialist in the last 12 months, 

by SHCN status, 2002 

11.5 

42.6 

17.7 

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

Figure 6: Percentage of children <18 whose doctor or parent thought they 
Figure 7. Among children <18 whose doctor or parent thought they 

78.6 

72.8 75.8 

15.1 12.9 17.1 

9.2 10.1 8.4

0 

20 

40 

60 

80 

100 

All children with SHCN without SHCN 

not a problem a small problem a big problem 

Percent 

Source: Center for Financing, Access, and Cost Trends, AHRQ, Household Component of the Medical 

Expenditure Panel Survey, 2002 

needed to see a specialist in the last 12 months, percentage distribution of 

problems in getting a referral to a specialist, by SHCN status, 2002