Chartbook 2005–2006

U.S. Department of Health and Human Services 

Health Resources and Services Administration

The National Survey of 

Children with Special Health Care Needs 

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 1

Chartbook 2005–2006

The National Survey of 

Children with Special Health Care Needs 

Suggested citation:

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child

Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. Rockville,

Maryland: U.S. Department of Health and Human Services, 2007.

Individual copies of this report are available at no cost from the HRSA Information Center, P.O. Box 2910, Merrifield, VA

22116, 1-888-ASK-HRSA or (703) 442-9051. The publication is also available online at www.mchb.hrsa.gov and

www.cdc.gov/nchs/slaits.htm.

U.S. Department of Health and Human Services 

Health Resources and Services Administration
DEPARTMENT OF HEALTH & HUMAN SERVICES Health Resources and Services

Administration

Rockville MD 20857

Dear Colleague:

The Health Resources and Services Administration is pleased to present this chartbook

highlighting the major findings of The 2005–2006 National Survey of Children with Special

Health Care Needs. This represents the second time the survey has been administered,

providing updated information on the prevalence of special health care needs among

children, both nationally and within each State, and on access to and satisfaction with health

care among children with special health care needs (CSHCN) and their families.

The survey continues to produce encouraging findings. A total of 10.2 million children, or

13.9 percent of the Nation’s children, have special health care needs. Of these children, 38

percent are never affected in their daily activities by their conditions, as reported by their

parents. This finding, which is consistent with the results of the 2001 survey, may reflect

their access to the services that CSHCN and their families need: 84 percent of CSHCN are

reported to receive all of the services they need, and the parents of 95 percent report

receiving all of the family support services they require.

The 2005–2006 survey also provides information about the six Core Outcomes used to

measure progress toward the Healthy People 2010 objective to increase the proportion of

States that have service systems for CSHCN. This analysis shows that while the care

received by a majority of CSHCN reflects most of the core outcomes, work remains to be

done to assure that all CSHCN receive comprehensive care through a medical home, and

that youth with special health care needs receive the services necessary to make transitions

to adult life and health care.

We at HRSA hope that these findings continue to be useful to you in your efforts to

monitor and improve systems of care for CSHCN.

Sincerely,

Elizabeth M. Duke

Administrator
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

Prevalence of CSHCN . . . . . . . . . . . . . . . . . . . . . . . . .9

Prevalence of CSHCN: individuals and households . .10

Prevalence of CSHCN: age and sex . . . . . . . . . . . .10

Prevalence of CSHCN: family income, . . . . . . . . . .11

race/ethnicity, and primary language 

Health and Functional Status of CSHCN . . . . . . . . .12

Consequences of special needs . . . . . . . . . . . . . . .13

Impact on the child . . . . . . . . . . . . . . . . . . . . . . . . .14

Missed school days . . . . . . . . . . . . . . . . . . . . . . . . .15

Functional difficulties . . . . . . . . . . . . . . . . . . . . . . . .16

Health conditions . . . . . . . . . . . . . . . . . . . . . . . . . .18

Health Insurance Coverage . . . . . . . . . . . . . . . . . . . .19

Insurance coverage during the past 12 months . . .19

Type of health insurance coverage . . . . . . . . . . . . .21

Adequacy of current insurance coverage . . . . . . . .21

Program participation . . . . . . . . . . . . . . . . . . . . . . .23

Health Care Needs and Access to Care . . . . . . . . . .24

Specific health care needs . . . . . . . . . . . . . . . . . . .25

Services needed but not received . . . . . . . . . . . . . .27

Need for family support services . . . . . . . . . . . . . . .28

Family support services needed but not received . .28

Difficulty receiving referrals . . . . . . . . . . . . . . . . . . .29

Usual source of care when sick . . . . . . . . . . . . . . . .30

Personal doctor or nurse . . . . . . . . . . . . . . . . . . . . .31

Care Coordination . . . . . . . . . . . . . . . . . . . . . . . . . . .32

Receipt of care coordination . . . . . . . . . . . . . . . . . .33

Need for care coordination . . . . . . . . . . . . . . . . . . .33

Family-Centered Care . . . . . . . . . . . . . . . . . . . . . . . .34

Receipt of family-centered care . . . . . . . . . . . . . . . .35

Impact on Families . . . . . . . . . . . . . . . . . . . . . . . . . . .38

Out-of-pocket expenditures . . . . . . . . . . . . . . . . . .39

Financial burden . . . . . . . . . . . . . . . . . . . . . . . . . . .41

Time spent providing care . . . . . . . . . . . . . . . . . . . .42

Impact on employment . . . . . . . . . . . . . . . . . . . . . .43

Core Outcomes: Key Measures of Performance . . . . .44

Families of CSHCN partner in decision-making . . . .45

at all levels and are satisfied with the 

services they receive. 

CSHCN receive coordinated, ongoing, . . . . . . . . . .46

comprehensive care within a medical home.

Families of CSHCN have adequate private . . . . . . .47

and/or public insurance to pay for 

the services they need.

Children are screened early and continuously . . . .48

for special health care needs. 

Community-based services for CSHCN are . . . . . .49

organized so families can use them easily. 

Youth with special health care needs receive . . . . .50

the services necessary to make transitions 

to all aspects of adult life, including adult 

health care, work, and independence. 

Overall quality of the system of care . . . . . . . . . . . .51

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 3

Table of Contents
State Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .52

Alabama . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .53

Alaska . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .54

Arizona . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55

Arkansas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .56

California . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .57

Colorado . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .58

Connecticut . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .59

Delaware . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .60

District of Columbia . . . . . . . . . . . . . . . . . . . . . . . . .61

Florida . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62

Georgia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .63

Hawaii . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64

Idaho . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .65

Illinois . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .66

Indiana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .67

Iowa . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .68

Kansas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .69

Kentucky . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .70

Louisiana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .71

Maine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .72

Maryland . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .73

Massachusetts . . . . . . . . . . . . . . . . . . . . . . . . . . . .74

Michigan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .75

Minnesota . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .76

Mississippi . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .77

Missouri . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .78

Montana . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .79

Nebraska . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80

Nevada . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .81

New Hampshire . . . . . . . . . . . . . . . . . . . . . . . . . . .82

New Jersey . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .83

New Mexico . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .84

New York . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .85

North Carolina . . . . . . . . . . . . . . . . . . . . . . . . . . . . .86

North Dakota . . . . . . . . . . . . . . . . . . . . . . . . . . . . .87

Ohio . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .88

Oklahoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .89

Oregon . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .90

Pennsylvania . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .91

Rhode Island . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .92

South Carolina . . . . . . . . . . . . . . . . . . . . . . . . . . . .93

South Dakota . . . . . . . . . . . . . . . . . . . . . . . . . . . . .94

Tennessee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .95

Texas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .96

Utah . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .97

Vermont . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .98

Virginia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .99

Washington . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .100

West Virginia . . . . . . . . . . . . . . . . . . . . . . . . . . . . .101

Wisconsin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .102

Wyoming . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .103

Technical Appendix . . . . . . . . . . . . . . . . . . . . . . . . .104

4 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Introduction

Children with special health care needs (CSHCN) are defined by the Department

of Health and Human Services, Health Resources and Services Administration

(HRSA), Maternal and Child Health Bureau (MCHB) as:

“...those who have or are at increased risk for a chronic physical,

developmental, behavioral, or emotional condition and who also

require health and related services of a type or amount beyond that

required by children generally.”1

This definition is broad and inclusive, and it emphasizes the characteristics held

in common by children with a wide range of diagnoses. The National Survey of

Children with Special Health Care Needs (NS-CSHCN) provides a consistent

source of both National- and State-level data on the size and characteristics of

the population of CSHCN. This survey, sponsored by HRSA’s MCHB and

carried out by the Centers for Disease Control and Prevention’s National Center

for Health Statistics, provides detailed information on the prevalence of CSHCN

in the Nation and in each State, the demographic characteristics of these

children, the types of health and support services they and their families need,

and their access to and satisfaction with the care they receive. 

The survey conducted in 2005–2006 represents the second round of the 

NS-CSHCN, and therefore presents an opportunity, in some cases, to make

comparisons from the findings of the original 2001 survey. However, in an effort

to improve the survey, many of the survey’s questions were revised or reordered, and some of the indicators have been re-defined, so some of the

indicators described here cannot be compared directly with the findings of the

2001 survey. Further information about the changes in the survey and the

indicators can be found at HRSA’s MCHB Data Resource Center for Child and

Adolescent Health, at www.childhealthdata.org. 

Overall, the survey shows that 13.9 percent of U.S. children have special health

care needs, and 21.8 percent of households with children include at least one

child with a special health care need. These rates represent a modest increase

from the percentage reported in 2001; however, the reasons for this increase

are not fully understood. While it is possible that the number of CSHCN is

actually increasing, it is also possible that children’s conditions are more likely

to be diagnosed, due to increased access to medical care or growing

awareness of these conditions on the part of parents and physicians.

CSHCN are as diverse as our Nation, representing all racial and ethnic

groups, ages, and family income levels. The children meeting the definition

also represent a range of levels of functional abilities, from those who are

rarely affected by their conditions to those who are significantly affected.

However, what they all share is the consequences of their conditions, such as

reliance on medications or therapies, special educational services, or assistive

devices or equipment.

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 5
Another common characteristic of CSHCN is their need for access to a wide

range of medical and support services to maintain their physical health, mental

and emotional health, and development. The survey documents the breadth

and extent of these needs, including prescription medications (needed by 86

percent of CSHCN), specialty medical care (52 percent), vision care (33

percent), mental health care (25 percent), specialized therapies (23 percent),

and medical equipment (11 percent). Most CSHCN receive the services they

need. However, 16 percent report at least one unmet need for services; the

most commonly mentioned is preventive dental care.

Families of CSHCN often require support as well in coping with the

consequences of their children’s conditions. Overall, 4.5 percent of families

report a need for respite care, 5.7 percent for genetic counseling, and 12

percent need family counseling to help deal with the stresses involved in having

a CSHCN. Again, while most families receive the services they need, the

parents of 5 percent of CSHCN report at least one unmet support service need.

A variety of factors influence children’s access to needed health and support

services. One is the availability and adequacy of health insurance coverage.

CSHCN are more likely than the population of children as a whole to have

insurance; at the time of the survey, only 3.5 percent of CSHCN were

uninsured, and 8.8 percent were uninsured at some time over the previous 12

months. However, one-third of insured respondents report that this insurance is

not always adequate to meet their children’s needs, either because the benefits

do not meet their needs, the charges are not reasonable, or they do not have

access to the providers they need. 

Another indicator of access to care is the presence of a usual source of care

that families can turn to when their child is sick, as well as a personal doctor or

nurse who knows the child and his or her particular needs. Again, while most

CSHCN have a usual source of sick care and a personal doctor or nurse,

some do not: 5.7 percent of CSHCN have no regular source of care when they

are sick or they rely on an emergency department, and 6.5 percent do not

have a personal doctor or nurse.

In addition to being accessible, care for CSHCN must also be family-centered;

that is, health care providers must respect the family as the constant in the

child’s life and family members as the child’s primary caretakers. To ensure that

care is family-centered, providers must spend enough time with the family;

ensure that they have the information they need; listen to the family’s concerns;

be sensitive to the family’s values and customs; and make the parents feel like

partners in their children’s care. Again, while a majority of families report that

their children’s care meets all of these criteria, one-third report that it does not.

Another important set of indicators reflects the impact of a CSHCN on the

family’s time, finances, and employment status. The financial impact of the care

of CSHCN can be substantial: the families of nearly one-third of CSHCN report

that they spend more than $500 per year on their child’s health care. Moreover,

the parents of 18 percent of CSHCN report that their child’s condition has

Introduction

6 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
caused them financial problems. These problems can be exacerbated if parents

must stop working or cut their work hours to care for their children, as 24

percent of families report that they do. 

The final set of indicators presented here includes HRSA’S MCHB six Core

Outcomes. These are measures that are used to monitor our progress toward

the goal of a comprehensive, family-centered, community-based, coordinated

system of care for CSHCN, and the outcomes can be monitored through the

questions asked in the NS-CSHCN. This analysis has found that, among

children from birth through age 11 (for whom five of the six outcomes apply),

20 percent receive care that meets all five criteria, and for adolescents aged

12–17, for whom all six outcomes are relevant, only 14 percent receive care

that meets all six standards.

Taken together, the indicators presented here paint a picture of a system of

care for CSHCN that meets the needs of many children and their families.

However, much room for improvement still exists, especially in the systems that

serve the most vulnerable children, such as those in low-income families and

those who receive coverage through public programs. This chartbook presents

the major findings of the survey on the national level, stratifying each indicator

by selected sociodemographic variables such as age, race/ethnicity, income

level, and type of insurance. The specific demographic variables used on each

page were selected to highlight those of greatest interest or strongest association

with each particular indicator; however, the full set of findings for each indicator

are available at HRSA’s MCHB Data Resource Center for Child and Adolescent

Health at www.childhealthdata.org. 

The second section of this chartbook shows the indicators for each of the 50

States and the District of Columbia. All indicators are displayed for each State,

except in cases where the sample size would compromise the respondents’

confidentiality. Finally, this chartbook concludes with a technical description of

the survey methodology. 

Introduction

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 7

Prevalence of CSHCN

The U.S. Department of Health and Human Services, Health

Resources and Services Administration (HRSA), Maternal and Child

Health Bureau (MCHB) defines children with special health care

needs (CSHCN) as: 

“...those who have or are at increased risk for a chronic physical,

developmental, behavioral, or emotional condition and who also

require health and related services of a type or amount beyond that

required by children generally.”1

This definition is broad and inclusive, incorporating children and youth

with a wide range of conditions and risk factors, and identifies children

based on the consequences they experience due to an ongoing health

condition. The definition is not anchored to a specific set of health

conditions, as CSHCN share many common needs regardless of their

specific diagnosis (or whether or not their condition has a clear

diagnosis).

One of the major goals of the NS-CSHCN is to determine the proportion

of children (from birth through 17 years of age), nationally and in each

State, who meet this definition. However, because of the difficulty of

including the range of factors that might place children at increased risk

for special health care needs, the population of children “at increased

risk” for chronic conditions has been excluded from this report. 

The following section describes the survey’s findings about the

prevalence of special health care needs among children. Throughout

this chartbook, the term “children” is used to refer to children and

youth from birth through age 17 unless otherwise specified. 

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 9
Prevalence of CSHCN: Individuals and

Households

One purpose of the NS-CSHCN was to estimate the prevalence of

CSHCN in the population nationally and in each State. CSHCN were

identified by asking parents if their child used more medical care, mental

health services, or educational services than is usual for most children of

the same age; if the child used specialized therapies, mental health

counseling, or prescription medications; and/or if the child was limited or

prevented in any way in his or her ability to do things that most children

of the same age can do because of a medical, behavioral, or other

health condition that is expected to last at least one year. Children were

considered to have special health care needs if their parents answered

“yes” to at least one question in each of these three categories. These

questions are part of the CSHCN Screener, which was developed by

researchers, practitioners, family advocates, and policy makers to

identify CSHCN in household surveys.2

Based on the series of screening questions, 13.9 percent of children

under 18 years of age in the United States, or approximately 10.2

million children, are estimated to have special health care needs.

Overall, 21.8 percent of U.S. households with children have at least

one child with special health care needs. 

Each of these figures represents an increase since the last survey in

2001: at that time, 12.8 percent of children were estimated to have

special health care needs, and 20.0 percent of households with children

had a child with special health care needs. A variety of factors may have

contributed to this increase, including increased access to diagnostic

services, better recognition of children’s conditions on the part of parents

and physicians, or a true increase in the prevalence of chronic

conditions in the population. More information on this issue can be

found at HRSA’s MCHB Data Resource Center for Child and Adolescent

Health (www.childhealthdata.org).

Prevalence of CSHCN: Age and Sex

The prevalence of special health care needs within the child population

increases with age. Preschool children (from birth through 5 years of

age) have the lowest prevalence of special health care needs (8.8

percent), followed by children aged 6–11 years (16.0 percent). Children

in the oldest age group (12–17 years) have the highest prevalence of

special health care needs (16.8 percent). The higher prevalence among

older children is likely attributable to conditions that are not diagnosed or

that do not develop until later in childhood. 

The prevalence of special health care needs among children also

varies by sex: 16.1 percent of boys are estimated to have special

health care needs compared to 11.6 percent of girls. 

Prevalence of Children with Special Health Care Needs

10 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

0

5

10

15

20

Prevalence of CSHCN: Age

8.8

16.0 16.8

0–5 years 6–11 years 12–17 years

0

5

10

15

20

Prevalence of CSHCN: Sex

16.1

11.6

male female

Prevalence of CSHCN: Individuals

CSHCN: 

13.9%

Prevalence of CSHCN: Households*

households

without

CSHCN: 

78.2%

households 

with CSHCN: 

21.8%

*Includes only households with children.

children 

without 

special 

health 

care needs: 

86.1%
Prevalence of CSHCN: Family Income,

Race/Ethnicity, and Primary Language

The prevalence of special health care needs among the child

population does not vary significantly by income group: prevalence

rates in each income group are approximately 14 percent. Poverty

guidelines are determined by a combination of family income and family

size: in 2005, the Federal poverty guideline (100 percent of poverty)

was $19,350 for a family of four.

The prevalence of special health care needs varies by the

race/ethnicity of the child. The prevalence of special health care

needs is highest among multiracial children (18.0 percent), followed

by non-Hispanic White (15.5 percent), non-Hispanic Black (15.0

percent), American Indian/Alaska Native (14.5 percent) and Native

Hawaiian/Pacific Islander children (11.5 percent). The prevalence of

special health care needs is lowest among Hispanic children (8.3

percent) and Asian children (6.3 percent).

Among Hispanics, the prevalence of special health care needs among

children varies substantially depending on whether English or Spanish is

the primary language spoken at home. Among Spanish speakers, 4.6

percent of children are reported to have special health care needs, but

the prevalence among English-speaking Hispanics more closely

resembles that of the population as a whole (13.0 percent). These

findings are consistent with other studies of the prevalence of health

conditions among Hispanic children.3,4,5

Prevalence of Children with Special Health Care Needs

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 11

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as 

$19,350 for a family of four.

0

5

10

15

20

Prevalence of CSHCN: Family Income

13.9 14.0 13.6 14.0

0–99% 

FPL*

100–199% 

FPL

200–399% 

FPL

400%+ 

FPL

13.0

4.6

8.3

0 5 10 15 20

Prevalence of CSHCN: Race/Ethnicity

15.0

8.3

14.5

6.3

11.5

18.0

15.5

non-Hispanic White

non-Hispanic Black

Hispanic

American Indian/Alaska Native

Asian

Native Hawaiian/Pacific Islander

mixed race

0

5

10

15

20

Prevalence of CSHCN Among 

Hispanics: Primary Language

All Hispanics English Spanish
Health and Functional Status of CSHCN

The population of CSHCN includes children with a wide range of conditions

with varying levels of impact and requiring a variety of services. This section

describes the types of special needs these children have and how they affect

their daily lives.

Types of special health care needs are described in three ways. First, we

discuss the consequences of children’s conditions: that is, the types of

services or treatments that children require or the effect of the condition on the

child’s functional abilities. Next, we group these functional impacts into three

major categories and show how children’s needs fall among these groups.

Finally, we present information about some of the health conditions found

among CSHCN.

In addition, this section also discusses the impact of children’s conditions on

their ability to do the things that most children of the same age do. This

indicator presents a general measure of the magnitude of the challenges that

children with special health care needs experience in their daily lives.

The survey also measured one specific aspect that is important to all children

of school age: the number of school days missed due to both chronic and

acute conditions during the year.

12 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Consequences of Special Needs

The screening questions used in the survey to identify CSHCN

included five major components. In addition to the existence of a

condition that has lasted or is expected to last at least 1 year, the

respondent must report that the condition had at least one of the

following consequences for the child:

■ The use of or need for prescription medication;

■ The use of or need for more medical care, mental health services,

or education services than other children of the same age;

■ An ongoing emotional, developmental, or behavioral problem that

requires treatment or counseling; 

■ A limitation in the child’s ability to do the things most children of

the same age do; 

■ The use of or need for special therapy, such as physical,

occupational, or speech therapy. 

Of these five qualifying criteria, the need for prescription medication

is by far the most common, reported for more than three-fourths of

CSHCN. The next most frequently reported consequence is the use

of or need for extra medical, mental health, or educational services

(39 percent of CSHCN), followed by the use of or need for emotional,

behavioral, or developmental problems (28 percent), limitation in

activities (21 percent), and the use of specialized therapies (18

percent). The percentages do not add to 100 because each child

may experience more than one consequence of his or her

condition(s). 

The proportion of CSHCN experiencing each consequence varies

across income levels. While the need for prescription medication is the

most common consequence among all income groups, the percentage

of CSHCN who currently need or use prescription drugs ranges from

72 percent of CSHCN with family incomes below the poverty level to

83 percent of CSHCN with family incomes of 400 percent of poverty or

more. Among CSHCN living in poverty, the parents of 38 percent report

an emotional, behavioral, or developmental problem, compared to 22

percent of CSHCN in the highest-income families. The prevalence of

limitations in activities also varies by income: the parents of 28 percent

of poor children report this consequence, compared to 16 percent of

children in high-income families. 

Health and Functional Status of CSHCN

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 13

0 10 20 30 40 50 60 70 80

Proportion of CSHCN Experiencing 

Each Consequence of Special Needs

38.5

28.4

21.3

17.5

78.4

prescription medication

elevated service use

emotional/behavioral/developmental problem

limitation in activities

use of or need for therapies

27.8

80.4

71.6

75.0

83.4

41.5

37.7

41.2

35.5

25.6

19.1

16.1

0–99% FPL*

100–199% FPL 

200–399% FPL

400%+ FPL

Type of Special Health Care Need: 

Family Income

*Federal Poverty Level. In 2005, the HHS poverty guidelines 

defined 100 percent of poverty as $19,350 for a family of four.

0 10 20 30 40 50 60 70 80

use of or need for therapies

limitation in activities

emotional/behavioral/developmental problem

elevated service use

prescription medication

33.1

25.0

22.1

37.8

22.7

13.7

19.9

16.2
Impact on the Child

The survey measured the impact of the child’s special need through

two questions:

■ How often does the child’s condition affect his or her ability to do

the things other children of the same age do? 

■ To what degree does the condition affect the child’s ability to do

those things?

The responses to these questions were combined to produce an

indicator that reflects both the frequency and the intensity of the

effects of the child’s condition on his or her activities.

Based on parents’ reports, 38 percent of CSHCN are never affected in

their ability to do things other children do. This may be attributable to

the nature of their health condition or to the treatment they receive to

manage their conditions. Another 39 percent are moderately affected

some of the time. Nearly one quarter (24 percent) are affected usually,

always, or a great deal by their conditions.

The percentage of children who are affected by their conditions

usually, always, or a great deal is more than twice as high among

children in low-income families as among those in families in the

highest income group. Overall, 35 percent of children in poverty are

affected usually, always, or a great deal, compared to 16 percent of

children in families with incomes of 400 percent of poverty or more.

The impact of children’s conditions also varies across racial/ethnic

groups. Non-Hispanic White children are the most likely to report

never being affected by their conditions, and the least likely to be

affected usually, always or a great deal. Despite the fact that Hispanic

children are less likely to be identified as having special health care

needs than non-Hispanic White or non-Hispanic Black children, those

Hispanic children who do have special health care needs are more

likely to be reported to be affected usually, always, or a great deal by

their conditions. 

Health and Functional Status of CSHCN

14 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

daily activities affected 

usually, always 

or a great deal: 24.0%

daily activities 

never affected

daily activities 

moderately 

affected some 

of the time

22.9

30.2

41.1

49.5

42.139.938.6 34.9 35.0

30.0

20.3

15.6

0–99% FPL*

100–199% FPL 

200–399% FPL

400%+ FPL

0

10

20

30

40

50

Impact of Child’s Condition: Family Income 

Impact of Child’s Condition on 

Functional Ability

daily activities 

never affected

daily activities 

moderately 

affected some 

of the time

daily activities 

affected usually, 

always, or a great deal

daily activities 

affected usually, 

always, or a great deal

40.8

29.5

36.0

31.6

37.3

43.5

39.4 38.0

21.9

27.0 24.6

30.4

non-Hispanic White

non-Hispanic Black 

non-Hispanic other 

Hispanic

0

10

20

30

40

50

Impact of Child’s Condition: Race/Ethnicity

*Federal Poverty Level. In 2005, the HHS poverty guidelines 

defined 100 percent of poverty as $19,350 for a family of four.

daily activities 

never affected: 

37.6%

daily activities

moderately 

affected 

some of the 

time: 38.5%
Missed School Days

The number of days of school a child misses during the year is another

measure of the impact of a child’s condition on his or her ability to

function as other children do. In general, the average child misses 3

days of school due to acute conditions.6 In comparison, among schoolaged CSHCN, the average is 7 school days (due to both chronic and

acute conditions). However, this average is affected by a relatively small

group of children who miss many school days: approximately 14

percent of CSHCN miss 11 or more school days, while just over half

miss 3 or fewer days. 

Children whose conditions have a greater impact on their activities

were more likely to miss 11 or more days of school than children

whose conditions have a lesser impact. More than one quarter of

children whose conditions affect their activities usually, always, or a

great deal missed at least 11 school days, compared to 5 percent of

children whose daily activities are never affected by their conditions. 

Health and Functional Status of CSHCN

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 15

4–6 days: 21.3%

7–10 days: 12.7%

11+ days: 14.3%

0–3 days: 51.7%

Missed School Days Due to Illness 

Among CSHCN Aged 5–17 Years

daily activities 

never 

affected

daily activities 

moderately 

affected some 

of the time

daily activities 

affected usually, 

always or a great deal

5.0

16.2

25.8

0

10

20

30

Percent of CSHCN Who Missed 11 or More 

Days of School Due to Illness: Impact of 

Condition on Child’s Functional Ability
Functional Difficulties

One way of classifying children’s functional status is to group their

functional difficulties into categories based on the type of activity that is

affected. Overall, the parents of 57 percent of CSHCN report that their

child has difficulty with at least one bodily function (such as eating,

dressing, or bathing), and half report that their child has difficulty with

participation in activities (such as walking or running). Finally, 42 percent

report emotional or behavioral difficulties. A child can have difficulties in

more than one area.

Another way of looking at functional impact is to create mutually

exclusive categories (in which each child falls into only one group). Of

these categories, the largest is that of children who have difficulty with

their bodily functions only, representing 27 percent of CSHCN. The next

largest group is children who are reported to have all three kinds of

difficulties (17 percent), followed by those who have difficulty with

participation in activities and an emotional or behavioral difficulty

(approximately 15 percent of CSHCN). Only 3.4 percent of CSHCN are

reported to have emotional or behavioral difficulties without any

additional difficulties with bodily functions or participation in activities.

It should be noted that 15 percent of CSHCN are reported as not having

any of these types of difficulties as a result of their conditions. In 90

percent of these cases, this is attributable to the treatments and

therapies that keep their conditions well-managed. 

Health and Functional Status of CSHCN

16 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Distribution of Functional Difficulties 

Among CSHCN

activity only: 8.5%

emotional or 

behavioral only: 3.4%

bodily function 

and activity: 8.7%

bodily function 

and emotional/

behavioral: 5.1%

activity and

emotional/

behavioral:

15.3%

all three

types: 16.9%

none of the 

three: 15.4%

bodily function

only: 26.8%

difficulty

with any bodily 

function

difficulty

with participation 

in any activity

emotional

or behavioral 

difficulty

Types of Functional Difficulties Among 

CSHCN

57.4

49.3

41.9

0

10

20

30

40

50

60
Children with lower family incomes were more likely to be reported to

have each kind of functional difficulty than children with higher family

incomes. The difference was most pronounced for emotional or

behavioral difficulties: 61 percent of CSHCN in poverty were reported

to have difficulties in this area, compared to 30 percent of CSHCN

with family incomes of 400 percent of poverty or more. 

Non-Hispanic Black and Hispanic children were also more likely than

non-Hispanic White and non-Hispanic children of other races to have

each type of functional difficulty. Difficulties with bodily functions were

most commonly reported among children of all racial and ethnic

groups, but the percentage of children who were reported to have

these difficulties ranged from 54 percent of non-Hispanic White

children to 68 percent of non-Hispanic Black children. There was also

a substantial racial/ethnic disparity in the percentage of children

reported to have emotional or behavioral difficulties; the proportion

ranged from 39 percent of non-Hispanic White children to 49 percent

of non-Hispanic Black children. 

Health and Functional Status of CSHCN

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 17

difficulty with 

any bodily 

function

difficulty with 

participation in 

any activity

emotional or 

behavioral 

difficulty

67.1

60.3

50.1 55.9

62.357.7

45.038.6

60.8

48.7

36.4

29.5

0–99% FPL* 

 100–199% FPL 

 200–399% FPL

 400%+ FPL

0

20

40

60

80

100

Percent of CSHCN with Each Type of 

Functional Difficulty: Family Income

non-Hispanic White

 non-Hispanic Black

 non-Hispanic other

 Hispanic

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as 

$19,350 for a family of four.

difficulty with 

any bodily 

function

difficulty with 

participation in 

any activity

emotional or 

behavioral 

difficulty

53.8

68.2 61.2 58.8

47.7 52.248.3

54.7

39.3

48.8

41.3 46.7

0

20

40

60

80

100

Percent of CSHCN with Each Type of 

Functional Difficulty: Race/Ethnicity
Health Conditions

The survey asked parents of CSHCN whether their children had any

of a list of 16 conditions. This list did not, of course, include all

possible conditions that CSHCN might have. In addition, parents

could report that their children had more than one condition, so any

given condition listed may or may not be the cause of the child’s

special health care needs.

Overall, 91 percent of CSHCN were reported to have at least one

condition on the list. One in three CSHCN have any two conditions on

the list (32 percent) and one in four have three or more conditions (25

percent). Allergies, reported by parents of 53 percent of CSHCN, are

the health condition most commonly reported by parents of CSHCN.

Other commonly reported conditions are asthma (39 percent), attention

deficit disorder (30 percent), and emotional problems (21 percent).

It is important to note that these percentages represent the percent of

CSHCN who have these conditions, not the prevalence of the

conditions in the population of children as a whole.

Health and Functional Status of CSHCN

18 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Allergies 53.0%

Asthma 38.8%

Attention deficit disorder/attention 29.8%

deficit hyperactivity disorder 

Depression, anxiety, or other 21.1%

emotional problems

Migraine or frequent headaches 15.1%

Mental retardation 11.4%

Autism or autism spectrum disorder 5.4%

Joint problems 4.3%

Seizure disorder 3.5%

Heart problems 3.5%

Blood problems 2.3%

Cerebral palsy 1.9%

Diabetes 1.6%

Down syndrome 1.0%

Muscular dystrophy 0.3%

Cystic fibrosis 0.3%

Percent of CSHCN with Selected Conditions

one: 33.9%

two: 32.2%

three or 

more: 25.0%

no conditions 

from list: 8.9%

Number of Conditions Reported 

From List
Health Insurance Coverage

Health insurance, whether financed through the public or private

sector, is essential for children to access needed care. Without health

insurance, children are less likely to receive necessary preventive care,

and acute health care when children are sick can leave their families

with overwhelming medical bills.

This section reviews the survey’s findings on insurance coverage

among CSHCN, including the proportion that have health insurance

and the type of coverage (public or private) that they have.

For children with insurance, the survey also assesses parents’

perceptions of the adequacy of that coverage. To do this, the survey

measured whether the plan offers benefits and services that meet the

child’s needs, whether the family considers any costs not covered by

the plan to be reasonable, and whether the plan allows the child to

see the providers that he or she needs.

Finally, this section assesses the use of other programs and services,

such as special education and early intervention services, that help

CSHCN meet their medical and education needs. 

Health Insurance Coverage during the Past 12

Months

The survey asked parents of CSHCN whether their child had

insurance in the past 12 months and what kind of insurance they had.

Health insurance was defined as private insurance provided through

an employer or union or obtained directly from an insurance company;

public insurance, such as Medicaid, the State Children’s Health

Insurance Program (SCHIP), military health care (TRICARE,

CHAMPUS, or CHAMP-VA); or some other plan that pays for health

services obtained from doctors, hospitals, or other health

professionals.

Overall, 91 percent of CSHCN were reported to have been insured for

all of the previous 12 months, while the remaining 9 percent were

uninsured for all or some part of the year. This represents an increase in

insured CSHCN since the last survey in 2001: at that time, nearly 12

percent of CSHCN were reported to have been uninsured at some point

during the previous year. This decrease in the percentage of CSHCN

who were uninsured was accompanied by an increase in the

percentage with public insurance. 

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 19

insured full year: 91.2%

ever uninsured in 

past 12 months: 8.8%

Health Insurance Coverage for CSHCN 

in the Past 12 Months
Health insurance coverage among CSHCN varies by income level.

CSHCN with family incomes below 100 percent of poverty and

CSHCN with family incomes between 100 and 199 percent of poverty

are the most likely to have been uninsured at some point during the

past year (14 percent of each group). Children with higher family

incomes are much less likely to be without insurance: 7.1 percent of

CSHCN with family incomes between 200 and 399 percent of poverty

were uninsured at some point during the past year, while the same

was true of only 2.9 percent of CSHCN with family incomes of 400

percent of poverty or greater. 

Health insurance coverage among CSHCN also varies by

race/ethnicity. Hispanic children were the most likely to have been

uninsured at some point during the past year (15 percent), followed by

non-Hispanic Black children (11 percent). Non-Hispanic White CSHCN

were the least likely to have been uninsured at some point during the

year (7 percent). Although uninsured rates declined within each

racial/ethnic group since the last survey in 2001, the most notable

drop is for Hispanic CSHCN (from 19 to 15 percent). 

Health Insurance Coverage

20 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

0–99% FPL*

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 for a 

family of four.

100–199% 

FPL

200–399% 

FPL

400%+ FPL

14.2 14.1

7.1

2.9

0

5

10

15

20

Percent of CSHCN Ever Uninsured in 

the Past 12 Months: Family Income

nonHispanic 

White

nonHispanic 

Black

nonHispanic 

other

Hispanic

7.1

11.0

8.9

15.1

0

5

10

15

20

Percent of CSHCN Ever Uninsured in 

the Past 12 Months: Race/Ethnicity
Type of Health Insurance Coverage

Parents of CSHCN were asked what type of insurance their child

had at the time of the interview. Overall, almost 97 percent of

CSHCN were reported to have some type of insurance at the time

of the interview: 59 percent had private insurance, which includes

insurance provided through an employer or union or obtained

directly from an insurance company, and 28 percent had public

insurance, such as Medicaid, the State Children’s Health Insurance

Program (SCHIP), military health care (TRICARE, CHAMPUS, or

CHAMP-VA). A small percentage (2.0 percent) had another form of

comprehensive insurance. Another 7.4 percent of CSHCN had both

private and public insurance, and 3.5 percent were uninsured at the

time of the interview. 

Compared to 2001, a smaller percentage of CSHCN were reported to

have private coverage (65 percent in 2001 compared to 59 percent in

2005–2006), and a higher percentage were reported to have public

coverage (22 percent in 2001 versus 28 percent in 2005–2006).

Adequacy of Current Insurance Coverage

The parents of CSHCN with health insurance were asked three

questions about their children’s coverage:

■ Does the plan allow the child to see the health care providers

that he/she needs?

■ Does the plan offer benefits and cover services that meet their

needs?

■ Are the costs not covered by the plan reasonable?

If parents answered “usually” or “always” for all three of these

questions, then the child’s coverage is considered to be adequate.

All others are considered to have inadequate insurance coverage. 

Overall, one-third of CSHCN were reported by their parents to have

inadequate insurance coverage. Nine percent of CSHCN were

reported to have coverage where the child was not allowed to see

needed providers, almost 13 percent were reported to have a plan

where the benefits do not meet the child’s needs, and 28 percent

were reported to have a plan with charges that are unreasonable.

These figures are not mutually exclusive and the parents of some

CSHCN may have reported more than one of these problems with

their child’s coverage. 

Health Insurance Coverage

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 21

criteria for 

adequate

insurance are 

not usually

or always met: 

33.1%

Percent of Insured CSHCN with 

Inadequate Insurance

*The criterion is not usually or always met.

child not allowed 

to see needed 

providers

benefits do not 

meet child’s 

needs

charges are not 

reasonable

9.3

12.7

28.1

0

10

20

30

Percent of CSHCN Whose Insurance Does 

Not Meet Each Criterion for Adequacy*

criteria for 

adequate

insurance are

usually or 

always

met: 66.9%

private only: 59.1%

uninsured: 3.5%

other comprehensive 

insurance: 2.0%

private and 

public: 7.4%

public only: 

28.1%

Type of Current Insurance Coverage 

for CSHCN
Adequacy of insurance coverage among CSHCN varies by family

income. CSHCN with family incomes below 100 percent of the

poverty level are most likely to be reported to have inadequate

insurance coverage (36 percent), while the parents of CSHCN with

family incomes of 400 percent of poverty or more are least likely to

report that their children have inadequate insurance (29 percent). 

The perceived adequacy of insurance coverage also varies by type

of insurance. Children with public insurance alone are less likely to

be reported to have inadequate coverage (31 percent) than children

with private insurance alone or in combination with public coverage

(34 percent). 

Perceived adequacy of insurance coverage among CSHCN also varies

noticeably by the impact of the child’s condition. Children who are

reported by parents to have a condition that never affects their abilities

are the least likely to have inadequate insurance (26 percent), followed

by children who are sometimes affected by their condition (36 percent).

Children who are affected usually, always, or a great deal by their

condition are the most likely to have inadequate insurance; 41 percent

of these children are reported to have a plan that does not usually or

always meet all of their needs. 

Health Insurance Coverage

22 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

0

10

20

30

40

Percent of Insured CSHCN with 

Inadequate Insurance:* Family Income

35.8 34.0 34.6

29.0

0–99% 

FPL**

*One or more criteria are not always or usually met: 

adequate benefits, access to needed providers, and 

reasonable charges. **Federal Poverty Level. In 2005, the 

HHS poverty guidelines defined 100 percent of poverty as 

$19,350 for a family of four. 

*One or more criteria are not always or usually met: 

adequate benefits, access to needed providers, and 

reasonable charges.

100–199% 

FPL

200–399% 

FPL

400%+ 

FPL

0

10

20

30

40

Percent of Insured CSHCN with 

Inadequate Insurance:* Insurance Type

33.6 30.9 33.9

private 

only

public

only

private and 

public

*One or more criteria are not always or usually met: 

adequate benefits, access to needed providers, and 

reasonable charges.

0

10

20

30

40

Percent of Insured CSHCN with 

Inadequate Insurance:* Impact of Child’s 

Condition on Functional Ability

25.8

35.5

40.8

daily activities 

never affected

daily activities 

moderately 

affected some of 

the time

daily activities 

affected usually, 

always, or a 

great deal
Program Participation

In addition to health insurance, a number of public programs are

available to provide essential services and supports to eligible CSHCN.

One program, the Infants and Toddlers with Disabilities Program

funded through the Individuals with Disabilities Education Act (IDEA),

commonly known as Early Intervention Services, provides specialized

therapies to children under age 3 with developmental delays. These

services include counseling, nutrition, occupational and physical

therapy, service coordination, speech-language therapy, and

transportation, among others. Overall, 23 percent of CSHCN under

age 3 received these types of services. 

Special education programs provide educational and education-related

health care services to children aged 3 years and older. Of CSHCN in

this age group, 29 percent received these services. This proportion

varies greatly by family income; nearly 37 percent of CSHCN in poverty

receive services compared to 22 percent of children with family

incomes of 400 percent of poverty or more.

Health Insurance Coverage

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 23

0

10

20

30

Receipt of Early Intervention and 

Special Education Services: CSHCN

22.6

28.5

received early 

intervention services*

received special 

education services**

*Among CSHCN under age 3.

**Among CSHCN 3 years of age and older.

Percent of CSHCN Aged 3 and Older 

Participating in Special Education: 

Family Income

36.6

33.1

26.3

22.1

0

10

20

30

40

0–99%

FPL*

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 for a 

family of four.

100–199% 

FPL

200–399% 

FPL

400%+

FPL
Health Care Needs and Access 

to Care

CSHCN require a broad range of services, from primary and specialty

medical care to prescription medications, medical equipment and

therapies. In addition, the families of CSHCN may need additional

support services, such as respite care, family counseling, or genetic

counseling.

This section describes the percentage of CSHCN who need each of

a variety of medical and ancillary services, and the percent whose

families need each type of support service. In addition, this section

presents the percent whose parents report that their children needed

the service during the past year but did not receive it.

Other indicators used to assess access to care are described here as

well, including the percent of CSHCN who had difficulty receiving

referrals for specialty care when needed. In addition, this section

includes indicators that describe access to a usual source of care

when the child is sick, an important element of primary care for

children. These indicators include the percent of CSHCN who have a

place that they usually go when they are sick and whether they have a

personal doctor or nurse.

24 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Specific Health Care Needs

Like all children, those with special health care needs require

preventive health care and dental services and acute care when they

are sick. In addition, CSHCN need a variety of other services to

manage their conditions, maintain their abilities, and promote their

development. To assess the prevalence of need for specific services,

parents were asked whether there was a time in the past year when

their children needed any of the services listed in the table to the left.

The need most often cited for CSHCN is prescription medication: 86

percent of these children are reported to need prescription drugs. The

parents of most CSHCN also recognize their children’s need for

preventive dental care (81 percent) and routine preventive medical

services (78 percent). Just over half of CSHCN need the care of

medical specialists, such as cardiologists or pulmonologists. Other

services needed by a smaller proportion of children include

eyeglasses or vision care (needed by 33 percent of CSHCN), mental

health care (25 percent), dental care other than preventive care (24

percent), and physical, occupational, or speech therapy (23 percent).

Some of the services that are reported infrequently among the

population of CSHCN as a whole are much more commonly needed

by children whose conditions have a greater impact on their daily lives.

Of those children whose conditions affect them usually, always, or a

great deal, 47 percent needed specialized therapies such as physical,

occupational, or speech therapy, 42 percent needed mental health

services, and 63 percent needed specialty medical care.

Health Care Needs and Access to Care

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 25

Prescription drugs 86.4%

Preventive dental care 81.1%

Routine preventive care 77.9%

Specialty care 51.8%

Eyeglasses/vision care 33.3%

Mental health care 25.0%

Other dental care 24.2%

Physical, occupational, 22.8%

or speech therapy 

Disposable medical supplies 18.6%

Durable medical equipment 11.4%

Hearing aids/hearing care 4.7%

Home health care 4.5%

Mobility aids/devices 4.4%

Substance abuse treatment 2.8%

Communication aids/devices 2.2%

Percent of CSHCN Needing Specific Health

Services 

9.8

20.5

47.1

13.5

25.6

41.8 44.5

51.9

62.8

0

20

40

60

80

100

mental health specialty care

services

specialized

therapies

Percent of CSHCN Needing Specific 

Health Services: Impact of Child’s 

Condition on Functional Ability

daily activities affected usually, always, 

or a great deal

daily activities moderately affected

some of the time

daily activities

never affected
Other needs vary greatly by age. Preschool-aged children (aged 5 years

and under) are much more likely than older children to need home health

care (8.0 percent, compared to 3.6 percent of school-aged children and

adolescents), durable medical equipment (21 percent, compared to

7.8 percent of adolescents), and hearing aids (7.3 percent, compared to

3.4 percent of adolescents). In addition, the need for specialized

therapies declines with age: nearly 30 percent of children aged 5 years

and under needed these services, compared to 26 percent of children

aged 6–11 years and 17 percent of adolescents aged 12–17 years.

Conversely, adolescents (aged 12–17 years) are more likely to need

mental health care (32 percent, compared to 7.8 percent of

preschoolers), eyeglasses or vision care (46 percent, compared to 11

percent of preschoolers), and mobility aids (6.1 percent, compared to

2.6 percent of preschoolers).

Health Care Needs and Access to Care

26 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Specific Health Services Needed: Age

0 10 20 30 40 50

29.6

26.0

16.6

7.8

26.3

32.4

8.0

3.6

3.5

11.0

31.9

45.8

7.3

4.8

3.4

2.6

3.3

6.1

25.0

16.9

16.9

21.0

10.1

7.8

specialized therapies

mental health care

home health care

eyeglasses/vision care

hearing aids/hearing care

mobility aids/devices

medical supplies

durable medical equipment

0–5 years

6–11 years 

12–17 years
Services Needed but Not Received

For each service, families were asked if their child received all of the

care that he or she needed. Children may not receive services they

need for various reasons, including financial barriers, lack of access to

providers, and competing demands on families’ time.

Overall, 16 percent of CSHCN were reported to need at least one

health care service that they did not receive in the past year, and 6

percent needed more than one service that they did not receive. The

service most commonly reported as needed but not received was

preventive dental care: 6.3 percent of CSHCN overall needed but did

not receive preventive dental care. Other relatively common services

needed but not received were mental health care (3.7 percent),

therapies (3.1 percent), specialty care (2.8 percent), and other dental

care (2.6 percent).

Low-income and uninsured children are the most likely not to receive

the services they need. For example, children in poverty are three

times as likely as children with family incomes of 400 percent of

poverty or more not to receive at least one service they need (25 percent

versus 7.8 percent). 

Uninsured children are also more likely not to receive all the services

they need. Of uninsured children, 45 percent were reported to have at

least one service needed but not received, compared to 22 percent of

children with public insurance, 19 percent of children with both public

and private insurance, and 11 percent of privately-insured children.

Health Care Needs and Access to Care

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 27

Percent of CSHCN with Reported Health 

Services Needed but Not Received

6.3

3.7

3.1

2.8

2.6

1.9

1.6

1.4

preventive dental care

mental health care

specialty care

other dental care

routine preventive care

prescription drugs

eyeglass/vision care

physical, occupational,

or speech therapy

02468

Percent of CSHCN with One or More 

Reported Health Services Needed but 

Not Received

none: 83.9%

more than one: 

6.0%

one: 10.0%

0

10

20

30

Percent of CSHCN with at Least One Needed 

Service Not Received: Family Income

25.0 22.7

13.3

7.8

0–99% 

FPL*

100–199% 

FPL

200–399% 

FPL

400%+ 

FPL

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 for a 

family of four. 

0

10

20

30

40

50

Percent of CSHCN with at Least One Needed 

Service Not Received: Insurance Type

11.0

22.2 19.0

44.7

private 

only

public 

only

private and 

public

uninsured
Need for Family Support Services

In addition to their children’s needs, families of CSHCN may often

benefit from services that help them to cope with the challenges

associated with their children’s conditions. Family support services

addressed in the survey include family counseling (mental health care

for other family members), respite care (having someone else care for

the child so the parents or other family members can take a break),

and genetic counseling (for advice on inherited conditions related to

the child).

Overall, family counseling is the support service most commonly

needed by families of CSHCN, with the families of 12 percent needing

this service. Nearly six percent reported needing genetic counseling,

and 4.5 percent needed respite care.

Family Support Services Needed but Not

Received

The parents of a total of 4.9 percent of CSHCN reported needing but

not receiving family support services. The most common of these is

family counseling, needed but not received by the families of 2.4 percent

of CSHCN, closely followed by respite care, needed but not received by

the families of 2.2 percent. The families of 1.3 percent of CSHCN

reported needing but not receiving genetic counseling services.

While these overall proportions are small, families of low-income and

uninsured children were most likely to report needing but not receiving

family support services. Of CSHCN living in poverty, 7.4 percent

reported needing but not receiving at least one family support service,

compared to 2.6 percent of children with family incomes of 400

percent of poverty or more. 

Health Care Needs and Access to Care

28 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Percent of CSHCN with Needed Family 

Support Services Not Received: 

Insurance Type

7.4

6.8

4.0

2.6

0–99%

FPL*

100–199%

FPL

200–399%

FPL

400%+

FPL

0

2

4

6

8

10

*Federal Poverty Level. In 2005, the HHS poverty guidelines 

defined 100 percent of poverty as $19,350 for a family of four. 

Percent of CSHCN Whose Families 

Need Support Services

12.3

5.7

4.5

family 

counseling

genetic 

counseling

respite care

0

5

10

15

Percent of CSHCN with Needed Family 

Support Services Not Received

none: 95.1%

more than 

one: 0.9%

one: 4.0%

Percent of CSHCN with Needed Family 

Support Services Not Received

2.4 2.2

1.3

family 

counseling

genetic 

counseling

respite care

0

1

2

3

4

5
Similarly, families of uninsured children are more likely to report that

they needed but did not receive family support services. The families

of 11 percent of uninsured children did not receive needed family

support services, compared to 7.7 percent of children with public

insurance and 2.7 percent of privately-insured children.

Difficulty Receiving Referrals

As discussed earlier, just over half of CSHCN need care from

specialists, which may require referrals from a primary care provider.

Parents who reported that their children needed a referral in order to

see another doctor or receive services—33 percent of CSHCN—were

asked how much of a problem it was over the past 12 months to get

such a referral for their children.

Of those who needed a referral, 21 percent reported having a problem

receiving this referral. Reported problems obtaining referrals were most

common among uninsured children: 39 percent of uninsured children

who needed referrals had difficulty receiving them, compared to 23

percent of CSHCN with public insurance and CSHCN with both

private and public insurance, and 19 percent of children with private

insurance.

Health Care Needs and Access to Care

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 29

Percent of CSHCN Needing Referrals 

Reporting Problems Obtaining Them

not a problem: 

78.9% a problem: 21.1%

Percent of CSHCN Needing Referrals 

Reporting Problems Receiving Them: 

Insurance Type

18.7

23.0 23.4

 39.2

private 

only

public 

only

private 

and public

uninsured

0

10

20

30

40

50

Percent of CSHCN with Reported Family 

Support Services Needed but Not Received: 

Insurance Type

2.7

7.7

9.2 11.0

private public private

and public

uninsured

0

5

10

15
Usual Source of Care When Sick

Another measure of access to appropriate care is whether children

have an identified place to go when they are sick. The survey asked

whether there is a place, and what kind of place, the family usually

goes when the child is sick or when the family needs advice about the

child’s health. 

Overall, 94 percent of CSHCN have a usual source of sick care. In the

vast majority of cases (78 percent) this is a private doctor’s office; for

13 percent of children, it is a clinic or health center; and for 3.9

percent it is another setting. The parents of just 4.6 percent of CSHCN

report that their children have no usual source of sick care and an

additional 1.1 percent rely on an emergency room.

Children in low-income families are considerably more likely than

children in higher-income families to lack a usual source of sick care.

Of children with family incomes below the poverty level, 7.4 percent

had no usual place to go when they were sick, compared to 3.0

percent of children with family incomes of 400 percent of poverty or

more. Children in low-income families are also more likely to use

clinics or health centers as their usual source of care (22 percent,

compared to 6.6 percent of higher-income children), and less likely to

report that they go to a doctor’s office when they are sick (62 percent

compared to 88 percent).

Health Care Needs and Access to Care

30 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Usual Source of Sick Care Among CSHCN

doctor’s office 77.6%

clinic/health 

center 12.9%

emergency room 1.1%

other usual source 3.9%

no usual source 4.6%

Usual Source of Sick Care: Family Income

doctor’s 

office

clinic/health

center

emergency 

room

other usual

source

no usual

source

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

73.4

81.5

87.8

22.2

16.1

10.5

6.6

3.1

1.3

0.5

0.1

5.8

4.6

3.3

2.5

7.4

3.0

4.7

4.2

61.6

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 for a 

family of four. 
Health Care Needs and Access to Care

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 31

Percent of CSHCN Without a Personal 

Doctor or Nurse: Family Income

10.9

8.4

5.3

3.3

0–99%

FPL*

100–199%

FPL

200–399%

FPL

400%+

FPL

0

5

10

15

Percent of CSHCN with a Personal 

Doctor or Nurse

one: 56.6%

none: 6.5%

more than

one: 36.9%

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 for a 

family of four. 

Personal Doctor or Nurse

The survey also asked whether children have one or more personal

doctors or nurses, defined as the health care provider or providers

who know the child best. Because the health conditions and risks

faced by CSHCN can be complex, having such a consistent source 

of care can be especially important.

Overall, 94 percent of CSHCN are reported to have at least one

personal doctor or nurse and 6.5 percent do not have any. The

proportion of children who lack a personal health care provider is

highest among children in low-income families, of whom 11 percent

do not have such a provider. Among children with family incomes of

400 percent of poverty or more, 3.3 percent lack a personal doctor

or nurse.
Care Coordination 

Care coordination has been defined as “a process that links CSHCN to

services and resources in a coordinated effort to maximize the potential

of children and provide them with optimal health care.”7 While care

coordination plays an important role in the care received by CSHCN,

not all families who need this coordination receive it. To measure the

proportion of CSHCN receiving care coordination, the survey asked

parents about their satisfaction with the communication among the

child’s doctors and between the child’s doctor and other providers, and

about how often care coordination was available, if needed.

This section describes the proportion of children who are receiving

needed care coordination. 

32 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Receipt of Coordinated Care 

The survey asked several questions to determine whether CSHCN

were receiving coordinated care:

■ How satisfied are you with the communication among your child’s

doctors and other health care providers, if needed?

■ How satisfied are you with communication between your child’s

health care providers and his/her school, early intervention

program, child care providers, or vocational education or

rehabilitation program, if needed?

■ How often do you get as much help as you want with arranging or

coordinating care, if needed?

For a child to qualify as receiving coordinated care, the parent had to

report usually receiving help when needed and being “very satisfied” with

communication among providers (when needed) and communication

between providers and other programs (when needed). Overall, 46

percent of CSHCN received coordinated care by this definition.

Of the three individual elements of care coordination, the one that was

least often met was communication among health care providers: the

parents of 24 percent of CSHCN reported not being very satisfied. The

parents of 15 percent of CSHCN reported that they did not usually

receive help when needed, while the parents of 13 percent of CSHCN

reported that they were not very satisfied with communication

between health care providers and other programs.

Need for Care Coordination

Some families who need help with coordination of their children’s care

have difficulty obtaining access to care coordination services. Overall,

the parents of 55 percent of CSHCN did not report that they needed

help with care coordination, either because their children only saw one

provider or because the parents coordinated their care themselves.

The parents of 30 percent reported that they needed help and usually

received it. The parents of the remaining 15 percent reported that they

needed help and did not receive it.

Care Coordination

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 33

Percent of CSHCN Whose Care Did Not Meet 

Individual Care Coordination Components*

23.7

14.7 12.9

communication 

among health

care providers

*Parents reported they were not “very satisfied” with 

communications components (when such communication 

was needed) or did not usually get help when needed.

communication 

between health care 

providers and other 

providers/

programs

receipt of help 

coordinating 

care

0

10

20

30

40

Receipt of Coordinated Care: CSHCN

received 

coordinated 

care: 46.0%

did not need 

coordinated 

care 22.2%

lacked one

 or more

elements

 of coordinated 

care: 31.8%

Need for and Receipt of Help Arranging 

or Coordinating Care

did not need 

help: 54.9%

needed help 

and usually or 

always got it: 

30.4%

needed help and 

did not get it: 

14.7%
Family-Centered Care

Family-centered care is an approach to the planning, delivery, and

evaluation of health care whose cornerstone is active participation

between families and professionals. Family-centered care helps

support the family’s relationship with the child’s health care providers

and recognizes the importance of the family’s customs and values in

the child’s care. To measure family-centeredness of care, the survey

asked parents whether their child’s providers spend enough time with

the child, listen carefully to the parents, make the parents feel like a

partner in their child’s care, are sensitive to the family’s customs and

values, and provide the specific information that the parent needs. In

addition, for families who needed an interpreter to help them speak to

the child’s doctors, the survey asked how often they were able to get

this service.

34 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Receipt of Family-Centered Care

The survey asked several questions to determine whether CSHCN

were receiving family-centered care:

■ How often did your child’s doctors and other health care providers

spend enough time with him/her?

■ How often did you get the specific information you needed from

your child’s doctors and other health care providers?

■ How often did your child’s doctors or other health care providers

help you feel like a partner in his/her care?

■ When your child is seen by doctors or other health care providers,

how often are they sensitive to your family’s values and customs?

■ How often did your child’s doctors and other health care providers

listen carefully to you?

■ How often were you able to get someone other than a family

member to help you speak with your child’s doctors or other

health care providers when an interpreter was needed?

For a child’s care to qualify as family-centered, the parent needed to

answer “usually or always” to each of the above elements. (If the child

did not need interpreter services, that component was excluded.)

Overall, 35 percent of CSHCN received care that lacked one or more

of the essential components of family-centered care.

Among the general population of CSHCN, the most commonly

lacking component of family-centered care was the doctor usually 

or always spending enough time with the child: the parents of 21

percent of CSHCN reported that their child’s care did not meet this

criterion. The parents of 17 percent of CSHCN reported that their

doctor did not usually or always provide enough information, and the

parents of 12 percent reported that the doctor did not usually or

always make the parent feel like a partner. Among children who

needed interpreter services, 44 percent did not usually or always get

the services they needed. 

Family-Centered Care

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 35

Percent of CSHCN Who Did Not Receive 

Family-Centered Care: Individual 

Component*

21.3

43.7**

16.9

12.4

11.1

11.2

does not usually 

spend enough time

does not usually provide 

enough information

does not usually make 

parent feel like a partner

is not usually sensitive to 

values/customs

does not usually listen 

to family’s concern

child does not have an 

interpreter when needed

Receipt of Family-Centered Care: 

CSHCN

received 

family-centered 

care: 65.6%

lacked one or more 

components of 

family-centered 

care: 34.5%

0 10 20 30 40 50

*Parents reported that care did not “usually or always” 

meet this criterion.

**Among children who needed interpreter services.
Receipt of family-centered care varies by family income, with those in

the lower income groups being more likely to receive care that is not

considered family-centered. Of CSHCN with family incomes below

100 percent of the poverty level, 50 percent did not receive familycentered care, according to their parents, followed by children with

family incomes between 100 and 199 percent of poverty (39 percent).

Children with family incomes of 400 percent of the poverty level or

higher were most likely to receive family-centered care.

Race/ethnicity is also a factor in children’s receipt of family-centered

care: Hispanic children were the most likely to receive care that was

lacking one or more components of family-centered care, according to

their parents (53 percent), followed by the parents of non-Hispanic

Black children (48 percent). Non-Hispanic White children were the most

likely to receive family-centered care, based on their parents’ reports. 

Family-Centered Care

36 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Percent of CSHCN Lacking One or More 

Components of Family-Centered Care: 

Family Income

50.2

39.1

24.9

30.7

0–99% 

FPL*

100–199% 

FPL

200–399% 

FPL

400%+ 

FPL

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.

0

10

20

30

40

50

60

Percent of CSHCN Lacking One or More 

Components of Family-Centered Care: 

Race/Ethnicity

28.0

47.5

52.6

37.2

nonHispanic 

White

nonHispanic 

Black

nonHispanic 

other

Hispanic

0

10

20

30

40

50

60
Receipt of family-centered care varies based on the impact of the

child’s condition on his or her abilities. Among children whose daily

activities are never affected by their conditions, 26 percent received

care that was not family-centered, compared to 37 percent of those

who are sometimes affected by their condition. Children who are

usually/always affected or are affected a great deal are most likely to

receive care that is not family-centered (44 percent). 

Insurance type also appears to have an impact on receipt of familycentered care. Children who are uninsured are the most likely to receive

care that is not family-centered (55 percent), followed by children with

only public insurance (44 percent). Children with only private insurance

are the most likely to receive family-centered care. 

Family-Centered Care

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 37

Percent of CSHCN Lacking One or More 

Components of Family-Centered Care: 

Impact of Child’s Condition on Functional 

Ability

25.7

36.8

44.4

daily activities 

never affected

daily activities 

moderately affected 

some of the time

daily activities affected 

usually, always, or a 

great deal

0 10 20 30 40 50

Percent of CSHCN Lacking One or More 

Components of Family-Centered Care: 

Insurance Type

28.4

43.8

55.4

40.9

private only

public only

private and public

uninsured

0 10 20 30 40 50 60
Impact on Families

Having a CSHCN can affect a family’s finances, employment status,

and mental health. The demands on families may require that parents

cut down their work hours or give up a job, at the same time that they

face burdensome out-of-pocket health care costs.

This section describes the impact that CSHCN have on their families.

One way to measure this impact is in dollars, as families often have

substantial out-of-pocket expenses for their children’s health care that

are not covered by insurance. Parents were also asked whether their

children’s conditions created a financial burden, another measure of the

economic impact of having a CSHCN.

Another measure is the time spent by family members providing care

directly or arranging for and coordinating their child’s care. The third

indicator presented in this section is the number of hours parents

spend per week on these tasks.

Finally, parents were asked whether their children’s needs had required

them to cut down on work or stop working altogether to care for their

child—requiring both the parent’s time as well as a financial sacrifice.

38 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Out-of-Pocket Expenditures

Families are often required to pay out of their pockets for health care

services not fully covered by their insurance plans. These services may

include therapies, home health care, prescription drugs, mental health

care, medical equipment, and dental services. Families of over half of

CSHCN reported spending $250 or more on health care in the

previous year for the care of their CSHCN. The families of 13 percent

of CSHCN spent between $501 and $1,000, and the families of 20

percent of children spent more than $1,000.

Children in low-income families are less likely to have high levels of

expenditures than are children from families with higher incomes: the

families of only 6.2 percent of children in poverty paid more than

$1,000 out of pocket for their children’s care, compared to the families

of 29 percent of CSHCN with incomes of 400 percent of poverty level

or more. This could be because children in low-income families are

more likely to be covered by Medicaid and State Children’s Health

Insurance Program (SCHIP), which limit the copays charged to

families. In addition, these data only include the expenses that families

actually paid; low-income families may be more likely to have unpaid

bills that are not reported here. Alternatively, low-income families may

be more likely to delay or forgo care if they feel they cannot afford the

out-of-pocket costs.

Impact on Families

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 39

Annual Out-of-Pocket Expenditures for 

Care of CSHCN

Annual Out-of-Pocket Expenditures for 

Care of CSHCN: Family Income

less than $250: 

42.6%

more than

$1,000: 20.0%

$501–1,000: 

13.0%

$250–500: 

24.4%

24.2

46.5

29.3

75.6

18.2

6.2

31.0

45.0

24.0

53.5

31.9

14.6

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL 

less than $250

$250–1,000

more than $1,000

0 10 20 30 40 50 60 70 80 90 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.
The families of non-Hispanic White children are the most likely to pay

more than $1,000 in health care expenses; 24 percent did so,

compared to the families of 15 percent of Hispanic children and 8

percent of non-Hispanic Black children. Non-Hispanic White children

are also the least likely to have families that pay less than $250 per

year. This may be related to the insurance status of non-Hispanic

White children.

The level of out-of-pocket costs borne by families of CSHCN also

varies by their children’s insurance status. Thirty-two percent of

uninsured children’s families pay more than $1,000 annually, compared

to 27 percent of those with only private coverage and 5 percent of

those with only public insurance. Similarly, 77 percent of children with

only public coverage live in families that pay less than $250 per year

out of pocket for their child’s health care, compared to 25 percent of

those with only private insurance and 30 percent of uninsured

children. This may be due to the limits on copayments within public

insurance programs, because publicly-insured and uninsured families

are not able to pay bills they receive, or because these families do not

seek care if they cannot pay the required copayments.

Impact on Families

40 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Annual Out-of-Pocket Expenditures for 

CSHCN: Race/Ethnicity

34.4

41.8

23.8

68.0

23.9

8.2

45.2

34.9

20.0

52.6

32.7

14.7

non-Hispanic 

White

non-Hispanic 

Black

non-Hispanic 

other

Hispanic

less than $250

$250–1,000

more than $1,000

0 10 20 30 40 50 60 70

Annual Out-of-Pocket Expenditures for 

CSHCN: Insurance Type

25.3

48.2

26.5

77.4

17.4

5.2

57.7

26.5

15.8

30.2

38.1

31.8

private

public

private and 

public

uninsured

0 10 20 30 40 50 60 70 80

less than $250

$250–1,000

more than $1,000
Financial Burden

To further assess the financial impact of a child’s condition on his or

her family, the survey asked whether the child’s condition had caused

a financial problem. It was reported that over 18 percent of CSHCN

have conditions that create financial problems for their families. 

The financial burden appears to be greatest for the families of CSHCN

who are uninsured. Nearly 42 percent of uninsured CSHCN live in

families that reported a financial problem, compared to 20 percent of

those with only public coverage and 15 percent of those with only

private insurance.

Families of children whose conditions affect their abilities usually,

always, or a great deal are also the most likely to report experiencing

financial problems. One-third of children whose conditions usually or

always affect their abilities live in families who report experiencing

financial problems, compared to only 7.5 percent of children whose

conditions never affect their abilities.

Impact on Families

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 41

Percent of CSHCN Whose Families 

Experience Financial Problems : 

Insurance Type

15.0

19.5

25.5

41.6

private only

public only

private and public

uninsured

0 10 20 30 40 50

Percent of CSHCN Whose Families 

Experience Financial Problems: 

Impact of Child’s Condition on 

Functional Ability

7.5

18.7

33.8 daily activities 

affected usually, 

always, or a great deal

daily activities 

moderately affected 

some of the time

daily activities 

never affected

0 10 20 30 40 50

Percent of CSHCN Whose Families 

Experience Financial Problems Due

to Child’s Condition

do not 

experience 

financial

problems: 

81.9%

experience

financial

problems:

18.1%
Time Spent Providing Care

Many families devote substantial amounts of time to their children’s

health care. They may participate in providing health care to their

children through such tasks as administering medications and

therapies, maintaining equipment, and providing transportation to

appointments. Families also spend time arranging or coordinating care

for their children by making appointments, making sure that care

providers are exchanging information, and following up on their child’s

health care needs. While the families of 47 percent of CSHCN spend

less than an hour a week on these activities, the families of 34 percent

devote 1 to 4 hours a week to these tasks, and the families of 10

percent spend 11 hours a week or more.

The self-reported time burden is greatest on low-income families. The

families of nearly 19 percent of poor children spend at least 11 hours

per week providing, arranging, or coordinating their children’s health

care, compared to the families of 4.3 percent of children with family

incomes of 400 percent of the poverty level or more.

The greater the impact of a child’s condition on his or her functional

ability, the more time the family spends on the child’s care. The

families of 24 percent of children whose activities are affected usually,

always, or a great deal by their conditions spend 11 hours or more

providing, arranging, or coordinating their care, compared to the

families of only 3.2 percent of children whose daily activities are never

affected by their conditions.

Impact on Families

42 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Percent of CSHCN Whose Families 

Spend 11 Hours or More Per Week 

Providing, Arranging, or Coordinating 

Care: Impact of Child’s Condition on 

Functional Ability

Percent of CSHCN Whose Families 

Spend 11 Hours or More Per Week 

Providing, Arranging, or Coordinating 

Care: Family Income

3.2

7.6

23.5

daily activities never affected

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

daily activities moderately affected some of the time

daily activities affected usually, always, or a great deal

Time Spent Providing, Arranging, or 

Coordinating Health Care for CSHCN, 

per Week

less than 1 

hour: 47.3%

1–4 hours: 34.1%

5–10 hours: 8.9%

11+ hours: 9.7%

0 10 20 30

18.6

13.1

6.8

4.3

0 10 20 30

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.
Impact on Employment

The complexity of a child’s special needs and the parents’ need to

devote time to the child’s care sometimes requires that parents cut

back on the number of hours they work or stop working completely to

care for their child. Overall, the parents of nearly 24 percent of CSHCN

report having to stop work or cut back on their hours at work, or both,

because of their children’s needs.

Of course, giving up a job is likely to reduce a family’s income.

Therefore, it is not surprising that children in lower-income families are

more likely to have parents who have sacrificed work hours: one-third

of CSHCN in poverty and 29 percent of those with family incomes

between 100 and 199 percent of poverty have parents who reported

that they cut back on work or stopped working to care for their

children, compared to 17 percent of children with family incomes of

400 percent of poverty or more.

A change in employment status is also more apt to occur in families

who have a child who is more severely affected by his or her

condition. The parents of 47 percent of children whose activities are

affected usually, always, or a great deal by their conditions report

cutting back on work or stopping work completely to care for their

children, compared to 9.1 percent of children whose daily activities are

never affected by their conditions.

Impact on Families

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 43

Percent of CSHCN Whose Parents Cut 

Back on Work or Stopped Working to 

Care for the Child: Family Income

33.1

29.0

20.7

16.8

0–99% 

FPL*

100–199% 

FPL

200–399% 

FPL

400%+ 

FPL

Impact of Child’s Condition on Parent’s 

Employment

no reported 

impact: 76.2%

stopped 

working or cut 

back on work 

or both: 23.8%

0

10

20

30

40

50

Percent of CSHCN Whose Parents Cut 

Back on Work or Stopped Working to 

Care for the Child: Impact of Child’s 

Condition on Child’s Functional Ability

9.1

23.8

46.8

daily activities 

never affected

daily activities 

moderately affected 

some of the time

affects abilities 

usually, often or a 

great deal

0 10 20 30 40 50

*Federal Poverty Level. In 2005, the HHS poverty guidelines 

defined 100 percent of poverty as $19,350 for a family of four.
Core Outcomes: 

Key Measures of Performance

Since 1989, the goal of the State Title V programs for CSHCN has

been to provide and promote family-centered, community-based,

coordinated care for CSHCN and to facilitate the development of

community-based systems of services for such children and their

families. A long-term national goal was articulated in Healthy People

2000: National Health Promotion and Disease Prevention Objectives

(also included in the 2010 edition) as follows:

Increase the proportion of states and territories that have service

systems for children with or at risk for chronic and disabling conditions

as required by Public Law 101-239.

HRSA’s Maternal and Child Health Bureau (MCHB), together with its

partners, has identified six core outcomes to promote the communitybased system of services mandated for all children with special health

care needs under Title V, Healthy People 2010, and the President’s

New Freedom Initiative (NFI) designed to break down barriers to

community living for people with disabilities. These outcomes give us a

concrete way to measure our progress in making family-centered care

a reality and in putting in place the kind of systems all children with

special health care needs deserve. Progress toward the overall goal

can be measured using these six critical indicators:

■ Families of children and youth with special health care needs

partner in decision making at all levels and are satisfied with the

services they receive;

■ Children and youth with special health care needs receive

coordinated ongoing comprehensive care within a medical home;

■ Families of CSHCN have adequate private and/or public insurance

to pay for the services they need;

■ Children are screened early and continuously for special health

care needs;

■ Community-based services for children and youth with special

health care needs are organized so families can use them easily; 

■ Youth with special health care needs receive the services

necessary to make transitions to all aspects of adult life, including

adult health care, work, and independence.

44 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Core Outcomes: Key Measures of Performance

Families of CSHCN partner in decision-making

at all levels and are satisfied with the services

they receive.

Family-centered care is based on the recognition that children live

within the context of families—which may include biological, foster,

and adoptive parents, step-parents, grandparents, other family

caregivers, and siblings. Family-centered care is a process to ensure

that the organization and delivery of services, including health care

services, meet the emotional, social, and developmental needs of

children; and that the strengths, and priorities of their families are

integrated into all aspects of the service system. For example, familycentered care supports families as they participate as integral

partners in the medical home and work with their children’s health

care professionals in making informed health care decisions. Familycentered care recognizes that families are the ultimate decisionmakers for their children, with children gradually taking on more and

more of this decision-making as they mature. 

This outcome was evaluated using two questions from the NSCSHCN: whether the doctor makes the parent feel like a partner in the

child’s care, and the parent’s level of satisfaction with the child’s health

services. Children whose parents reported that they usually or always

feel like a partner and that they are very satisfied with care were

considered to meet the overall criterion. This outcome was achieved

by 57.4 percent of CSHCN. 

The greater the impact of the child’s condition on his or her functional

ability, the less likely he or she is to have care that meets this criterion:

42 percent of children who are consistently or greatly affected by their

conditions achieved this outcome, compared to 70 percent of children

whose daily activities are never affected. Children in higher-income

families were also more likely to receive family-centered care: nearly

two-thirds of children with family incomes of 400 percent of poverty

or more achieved this outcome, compared to 50 percent of children

in poverty.

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 45

CSHCN Whose Families Partner in 

Decision-Making at All Levels and Are 

Satisfied with the Services They 

Receive: Impact of Condition on 

Functional Ability

57.4

69.9

54.8

42.4

TOTAL

daily activities 

never affected

daily activities 

moderately affected

 some of the time

daily activities 

affected usually, 

always, or a great deal

0 20 40 60 80 100

CSHCN Whose Families Partner in 

Decision-Making at All Levels and Are 

Satisfied with the Services They 

Receive: Family Income

50.0

52.7

58.7

41.1 64.8

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 for 

a family of four.

percent of CSHCN who achieved 

outcome

percent of CSHCN who achieved 

outcome
CSHCN receive coordinated, ongoing,

comprehensive care within a medical home.

Simply put, a medical home means a source of ongoing,

comprehensive, coordinated, family-centered care in the child’s

community. Child health care professionals and families agree that

medical homes provide important and unique benefits to children and

youth with special health care needs. 

The medical home can and should provide preventive services,

immunizations, growth and developmental assessments, appropriate

screening, health care supervision, and patient and family counseling

about health and psychosocial issues. The medical home also can and

should ensure that children have continuity of care from visit to visit,

from infancy through transition into adulthood. In addition, it must be

supported to provide care coordination services so that each family and

all the professionals serving them work together, as an organized team,

to implement a specific care plan and to address issues as they arise. 

Collaboration between the primary, specialty, and subspecialty

providers to establish shared management plans in partnership with

the child and family and to formulate a clear articulation of each

other’s role is a key component of the medical home concept.

Equally key is the partnership between the primary care professional

and the broad range of other community providers and programs

serving CSHCN and their families. The medical home concept

includes a responsibility for primary care professionals to become

knowledgeable about all the community services and organizations

families can access. 

This outcome was evaluated using a series of questions from the NSCSHCN: whether the child has a personal doctor or nurse; whether he or

she has a usual source of sick and well-child care; whether the child has

had problems obtaining needed referrals; whether the family is satisfied

with doctors’ communication with each other and the child’s school and

other systems; whether the family gets help coordinating the child’s care

if needed; whether the doctor spends enough time with the child;

whether the doctor listens carefully to the parent; whether the doctor is

sensitive to the family’s customs; whether the doctor provides the family

with enough information; whether the parent feels like a partner in the

child’s care; and whether the family receives interpretation services when

needed. All of these criteria were met by 47.1 percent of CSHCN.

Children whose conditions affected their functional ability usually, always,

or a great deal were less likely to receive care through a medical home

(31 percent, compared to 60 percent of children whose activities were

never affected by their conditions). Children in higher-income families

were also more likely to have medical homes: 56 percent of children

with family incomes of 400 percent of poverty or more achieved this

outcome, compared to 34 percent of children in poverty. 

Core Outcomes: Key Measures of Performance

46 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

CSHCN Who Receive Coordinated, 

Ongoing, Comprehensive Care Within a 

Medical Home: Impact of Condition on 

Functional Ability

47.1

60.3

44.0

31.2

TOTAL

daily activities 

never affected

 daily activities 

moderately affected 

some of the time

daily activities 

affected usually, 

always, or a great deal

percent of CSHCN who achieved 

outcome

percent of CSHCN who achieved 

outcome

0 20 40 60 80 100

CSHCN Who Receive Coordinated, 

Ongoing, Comprehensive Care Within a 

Medical Home: Family Income

34.0

41.3

51.0

56.2

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.
Families of CSHCN have adequate private

and/or public insurance to pay for the services

they need.

Health insurance coverage plays a critical role in ensuring access to

family-centered care for CSHCN. For children, gaps in health care

financing may mean that health care is delayed or that services are not

delivered. Uninsured and underinsured children are less likely to

receive care in a medical home that addresses their comprehensive

needs. The availability of private or public insurance is strongly

associated with the ability to obtain community-based services such

as medical care, dental care, mental health services, medical

equipment, supplies and prescriptions. Although Medicaid and the

State Children’s Health Insurance Program (SCHIP) have made a

significant contribution to decreasing the number of uninsured

children, the problem of underinsurance persists.

Adequacy of insurance was assessed using three questions: whether

or not health insurance benefits met the child’s needs, whether noncovered charges were reasonable, and whether the plan allows the

child to see the providers he or she needs. In addition, children

without any insurance at the time of the survey or at any time in the

past year were considered not to have adequate insurance. Overall,

this outcome was achieved by 62.0 percent of CSHCN. The likelihood

of achieving this outcome varied somewhat by the impact of the

child’s condition on his or her functional ability (from 54 percent of

children who were affected usually, always, or a great deal to 70

percent of children who were never affected) and by family income

(from 57 percent of children in poverty to 69 percent of children with

family incomes of 400 percent of poverty or more).

Core Outcomes: Key Measures of Performance

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 47

CSHCN Whose Families Have Adequate 

Private and/or Public Insurance to Pay 

for the Services They Need: Impact of 

Condition on Functional Ability

62.0

70.3

59.0

53.6

TOTAL

daily activities 

never affected

daily activities 

moderately affected 

some of the time

daily activities 

affected usually, 

always, or a great deal

percent of CSHCN who achieved 

outcome

percent of CSHCN who achieved 

outcome

0 20 40 60 80 100

CSHCN Whose Families Have Adequate 

Private and/or Public Insurance to Pay 

for the Services They Need: Family 

Income

56.8

57.4

61.8

69.1

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.
Children are screened early and continuously

for special health care needs.

In public health, screening often refers to a population-based

intervention to detect a particular condition or disease. However, as

used in the context of this goal, screening is much more

comprehensive and includes ongoing monitoring and assessment of

children and youth to promote health and well-being through familycentered care practices. Seen this way, screening has two major

goals. First, it is critical to identify, as early as possible, children in the

general population who have special health care needs so that they

and their families can receive appropriate services to reduce long term

consequences and complications. Some needs may be identified in

infancy, or during the perinatal period, while others may emerge later

in childhood and adolescence. Second, and equally important,

children and youth with special health care needs require ongoing

assessments to identify newly emerging issues including

developmental/behavioral issues, oral health, and psychosocial issues,

and to prevent secondary conditions that may interfere with

development and well-being. Ongoing assessment should also focus

on identifying the unique strengths of each child and family.

Only the second component of screening—ongoing assessments for

CSHCN—was measured in the NS-CSHCN. An estimate for this

outcome was arrived at using two survey questions: whether or not

CSHCN received routine preventive medical care in the past year and

whether they received routine preventive dental care during the past

year. Overall, this outcome was successfully achieved for 63.8 percent

of CSHCN. Children’s likelihood of achieving this outcome did not vary

substantially based on the impact of the condition on the child’s

functional ability. However, children with higher family incomes were

significantly more likely to be screened regularly: 77 percent of children

with family incomes of 400 percent of the poverty level achieved this

outcome, compared to 48 percent of children with family incomes

below the poverty level.

Core Outcomes: Key Measures of Performance

48 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

CSHCN Who Are Screened Early and 

Continuously for Special Health Care 

Needs: Impact of Condition on 

Functional Ability

63.8

66.7

63.2

60.4

TOTAL

daily activities 

never affected

daily activities 

moderately affected 

some of the time

daily activities 

affected usually, 

always, or a great deal

percent of CSHCN who achieved 

outcome

percent of CSHCN who achieved 

outcome

0 20 40 60 80 100

CSHCN Who Are Screened Early and 

Continuously for Special Health Care 

Needs: Family Income

47.7

56.9

66.8

76.8

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.
Community-based services for CSHCN are

organized so families can use them easily.

A community-based system of services is an infrastructure that

operates across service sectors. It facilitates the integration of services

in several dimensions—including organization, delivery, and financing.

The development of community-based systems of services is a

response to the complexity and fragmentation of services for children

with special health care needs and their families. Multiple service

programs—each with its own funding streams, eligibility requirements,

policies, procedures, and service sites—serve CSHCN. It is clear that

communities and their resources affect the way families of children

with special health needs find and use services. Therefore, the health

of communities themselves can have a positive effect on the growth

and development of CSHCN. There now exist a number of initiatives

to develop community-based systems of services and a number of

related community development initiatives in communities throughout

the Nation. The public sector has furnished much of the impetus for

such initiatives, but the private sector, especially through the efforts of

several national foundations, has increasingly become active in

instituting such initiatives.

This outcome was assessed using a single question asking parents

whether they had had difficulties trying to use the range of services

their children had needed over the past year. This outcome was

achieved by 89.1 percent of CSHCN.

Three-quarters of children whose conditions affected their daily

activities usually, always, or a great deal achieved this objective,

compared to nearly all (96 percent) children whose activities were

never affected. In addition, 92 percent of children in the highest

income bracket achieved the objective, compared to 86 percent of

children in poverty.

Core Outcomes: Key Measures of Performance

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 49

CSHCN Whose Services Are Organized 

So Families Can Use Them Easily: 

Impact of Condition on Functional 

Ability

89.1

96.4

89.7

76.8

TOTAL

daily activities 

never affected

daily activities 

moderately affected 

some of the time

daily activities 

affected usually, 

always, or a great deal

percent of CSHCN who achieved 

outcome

percent of CSHCN who achieved 

outcome

0 20 40 60 80 100

CSHCN Whose Services Are Organized 

So Families Can Use Them Easily: 

Family Income

85.7

86.7

90.3

92.0

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty 

guidelines defined 100 percent of poverty as $19,350 

for a family of four.
Youth with special health care needs receive

the services necessary to make transitions to

all aspects of adult life, including adult health

care, work, and independence. 

While rapid advances in medical science have enabled nearly all

children born with special needs to reach adulthood, youth with special

health care needs are much less likely than their non-disabled peers to

finish high school, pursue post-secondary education, get jobs, or live

independently. Few coordinated services have been available to assist

them in their transitions from school to work, home to independent

living, and child and family-focused care to adult-oriented care.

Transition planning must begin early in order to move children and

families along in a developmental fashion. One of the greatest

challenges in planning is how to make a successful transition from the

pediatric to adult health care system for youth with special health care

needs. Health care professionals, on both the pediatric and adult sides,

may lack the training, support, and opportunities they need to promote

the development of youth with special health care needs as partners in

health care decision-making and policy formulation. Some adult health

care providers may not be prepared to treat patients with complex

medical conditions that begin in childhood. The challenge remains to

improve the system that serves youth with special health care needs

while simultaneously preparing youth and their families with the

knowledge and skills necessary to promote self-determination,

wellness, and successful navigation of the adult service system. 

This outcome was evaluated for CSHCN 12–17 years of age using

several questions: whether doctors had discussed the shift to adult

providers, whether doctors had discussed the child’s changing needs

as he or she approached adulthood, whether anyone had discussed

insurance coverage in adulthood, and whether the child was usually or

always encouraged to take responsibility for his or her health. This

outcome was achieved for 41.2 percent of adolescents.

Adolescents whose conditions affected their activities usually, always,

or a great deal were considerably less likely to achieve this objective

than those whose daily activities were never affected (30 percent

versus 52 percent). Children living in poverty were only half as likely

as high-income children to receive adequate transition services (24

percent versus 54 percent).

Core Outcomes: Key Measures of Performance

50 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Youth with Special Health Care Needs 

Who Receive the Services Necessary 

to Make Transitions to All Aspects of 

Adult Life, Including Adult Health Care, 

Work, and Independence: Impact of 

Condition on Functional Ability

41.2

52.2

38.9

29.0

TOTAL

daily activities 

never affected

daily activities 

moderately affected 

some of the time

daily activities 

affected usually, 

always, or a great deal

percent of CSHCN who achieved 

outcome

percent of CSHCN who achieved 

outcome

Youth with Special Health Care Needs 

Who Receive the Services Necessary 

to Make Transitions to All Aspects of 

Adult Life, Including Adult Health Care, 

Work, and Independence: 

Family Income

24.3

33.7

43.5

53.7

0–99% FPL*

100–199% FPL

200–399% FPL

400%+ FPL

0 20 40 60 80 100

0 20 40 60 80 100

*Federal Poverty Level. In 2005, the HHS poverty guidelines 

defined 100 percent of poverty as $19,350 for a family of four.
Overall Quality of the System of Care

HRSA’s MCHB uses six critical indicators to measure the quality of a

system of care for CSHCN:

■ Families of children and youth with special health care needs

partner in decision making at all levels and are satisfied with the

services they receive;

■ Children and youth with special health care needs receive

coordinated ongoing comprehensive care within a medical home;

■ Families of CSHCN have adequate private and/or public insurance

to pay for the services they need;

■ Children are screened early and continuously for special health

care needs;

■ Community-based services for children and youth with special

health care needs are organized so families can use them easily;

■ Youth with special health care needs receive the services

necessary to make transitions to all aspects of adult life, including

adult health care, work, and independence.

Together, these six Core Outcomes can be used to measure progress

toward the Healthy People 2010 objective to increase the proportion

of States and territories that have service systems for children with or

at risk for chronic and disabling conditions. In this analysis, a child was

considered to be served by a “service system,” as described in the

Healthy People objective, if his or her care met all relevant criteria for

his or her age. For children from birth through age 11 years, the first

five outcomes were included, and all six outcomes were counted for

children from age 12 through 17 years.

Among children aged 11 years and under, 20.4 percent were served

by a system of care according to these standards. For children aged

12–17 years, 13.7 percent had care that met all six criteria.

Core Outcomes: Key Measures of Performance

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 51

Percent of CSHCN Aged 0–11 Years 

Served by a System of Care 

met fewer 

than five 

criteria: 79.6%

met all five 

criteria for a 

system of 

care: 20.4%

Percent of CSHCN Aged 12–17 Years 

Served by a System of Care 

met fewer 

than six 

criteria: 86.4%

met all six 

criteria for a 

system of 

care: 13.7%
State Data 

The NS-CSHCN provides information on CSHCN in the 50 States and

the District of Columbia. This section presents the survey’s findings

that include indicators of the prevalence of special needs among

children; indicators of the health status, health insurance coverage,

access to care, family-centered care, and impact of the family of

CSHCN; and the percentage of CSHCN whose care meets each of

HRSA’s MCHB six Core Outcomes.

The indicators of prevalence show the parent-reported percentage 

of children who have special health care needs by age, sex, income

level in relation to the Federal poverty guidelines, and race and

ethnicity. For most States, however, prevalence is shown only among

non-Hispanic White, non-Hispanic Black, and Hispanic children. For

smaller racial/ethnic groups, data have been suppressed in most

States to protect the confidentiality of the respondents. The

exceptions are States with significant populations of Asian

Americans, American Indian/Alaska Natives, or Native Hawaiians 

or other Pacific Islanders.

The indicators of impact, access to care, health insurance, and familycentered care, as well as the Core Outcomes, are shown for each

jurisdiction in comparison with the national statistics presented earlier

in this book.

52 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 53

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision. 

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

17.1

12.3 

20.8 

18.1 

20.1 

14.1 

21.3 

16.7 

14.7 

16.0 

17.0 

17.4 

16.5 

* 

*

*

16.6 

7.6

** 

14.2 

59.9 

50.0 

65.0 

62.3 

91.7 

38.3 

21.3 

15.1 

7.8 

1.8 

30.5 

12.5 

3.1 

14.7 

6.5 

5.8 

32.0 

17.9 

15.5 

14.0 

22.5 

Alabama 

187,263 
Estimated number of CSHCN: All statistics are based on parental reports

54 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

28.2 

16.1 

7.6 

3.6 

33.2 

21.5 

8.6 

20.3 

7.1 

9.8 

36.8 

23.1 

18.4 

10.5 

25.9 

51.8

39.3

62.2

62.0

85.1

42.2

Alaska 

22,406 

11.9

7.6 

13.2 

14.6 

12.8 

10.9 

12.4 

11.3 

12.0 

12.0 

11.9 

13.0 

12.3 

* 

7.8

*

14.1

10.5

**

11.8 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 55

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.5 

7.9 

14.0 

15.8 

14.0 

10.9 

9.9 

13.0 

13.1 

13.9 

15.2 

15.8 

24.8 

* 

5.3 

* 

15.1

8.4

4.3

14.4 

53.6

40.4

58.1

61.1

86.5

39.4

25.3 

17.3 

11.6 

5.1 

35.3 

21.6 

4.8 

29.7 

7.4

8.7 

37.7 

22.2

20.2 

11.3

23.1 

Arizona 

201,608 
Estimated number of CSHCN: All statistics are based on parental reports

56 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

17.7

11.9 

20.5 

20.5 

20.3 

15.0 

21.6 

17.8 

15.8 

15.7 

17.7 

18.0 

17.4 

*

*

*

21.4

11.7 

** 

21.5 

28.6

17.4 

7.5 

1.9 

30.8 

16.6 

4.7 

15.1 

5.5 

8.9 

33.1 

16.2 

20.5 

12.3 

20.7 

61.7

50.2

65.3

50.3

89.3

33.1

Arkansas 

120,087 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 57

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

9.9

5.6 

11.7 

12.4 

11.7 

8.1 

6.9 

9.8 

10.9 

11.4 

12.7 

13.9 

15.1 

5.2 

*

*

17.1 

6.2

3.7 

10.1 

46.6

42.2

59.6

62.7

85.3

37.1

23.7 

15.4 

8.0 

3.1 

35.5 

17.5 

5.4 

27.6 

7.4 

6.8 

40.7 

17.9 

15.5 

9.2 

23.7 

California 

964,167 
Estimated number of CSHCN: All statistics are based on parental reports

58 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.5

8.4 

13.0 

16.1 

14.6 

10.4 

9.6 

12.1 

13.1 

13.4 

13.7 

13.4 

15.6 

* 

*

*

21.3

8.9

2.9 

13.7 

23.4 

14.3 

12.7 

5.4 

34.6 

20.0 

5.0 

24.9 

6.5 

6.5 

32.6 

27.7 

23.9 

8.4 

20.6 

59.1

48.2

59.1

65.5

87.8

47.0

Colorado 

149,000 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 59

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.0

10.7 

18.3 

18.4 

18.3 

13.6 

19.5 

16.0 

14.9 

15.8 

15.7 

16.0 

14.6 

* 

* 

*

22.4

16.9

13.2 

20.3 

57.8

48.5

61.7

70.6

89.4

43.4

18.7

13.2 

6.2 

2.2 

34.4 

12.0 

6.0 

24.0 

4.2 

3.9 

33.4 

22.1 

15.7 

7.6 

21.9 

Connecticut 

133,073 
Estimated number of CSHCN: All statistics are based on parental reports

60 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

17.5

10.4 

21.8 

20.5 

21.5 

13.4 

17.5 

16.5 

18.1 

17.4 

18.1 

19.7 

16.0 

* 

*

*

17.0 

9.2

** 

20.4 

20.4 

12.3 

8.7 

2.2 

32.2 

14.2 

3.8 

24.4 

4.5 

3.5 

29.7 

17.4 

17.4 

8.4 

21.2 

61.1

48.1

63.2

67.2

88.1

42.4

Delaware 

34,522 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 61

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.7

10.2

18.6

16.7

17.2

12.2

17.2

12.5

14.1

13.7

15.4

13.4

15.9

*

*

*

18.0

7.2

4.7

14.3

53.1

36.9

62.7

62.8

88.8

24.0

20.9

16.7

5.0

1.9

34.7

18.0

7.2

25.2

8.5

9.6

43.8

14.7

14.8

12.7

25.6

District of Columbia

16,369
Estimated number of CSHCN: All statistics are based on parental reports

62 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

13.4

9.3 

15.2 

15.7 

15.9 

10.9 

12.9 

16.3 

12.2 

12.6 

14.4 

15.6 

11.9 

* 

*

*

14.9

9.4

7.4 

11.9 

28.0 

15.4 

12.2 

4.9 

35.8 

21.8 

6.0 

26.9 

6.0 

8.4 

38.3 

23.9 

21.9 

10.0 

30.1 

50.2

41.9

58.0

59.8

85.9

33.8

Florida 

551,263 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 63

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.0

10.0 

16.4 

15.9 

16.5 

11.3 

14.8 

15.3 

12.8 

13.3 

14.4 

15.4 

13.4 

* 

*

*

15.2

8.0

5.3

16.4 

54.0

47.3

61.2

65.3

91.0

37.0

26.1 

10.4 

10.4 

4.7 

32.6 

18.2 

5.7 

17.4 

5.9 

8.9 

35.0 

18.8 

17.1 

9.9 

23.8 

Georgia 

334,420 
Estimated number of CSHCN: All statistics are based on parental reports

64 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.0 

8.3 

14.2 

13.8 

14.0 

9.9 

13.8 

11.7 

11.9 

11.5 

11.4 

13.1 

9.6 

8.9 

*

11.2

12.9

15.5 

** 

16.7 

23.5 

12.8 

3.3 

0.9 

24.3 

13.3 

5.6 

21.4 

6.8 

6.0 

36.1 

11.1 

11.0 

11.3 

22.1 

59.3

45.2

73.5

69.7

88.8

39.4

Hawaii 

36,066 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 65

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

11.4

7.1 

12.8 

14.3 

12.9 

9.9 

12.0 

12.3 

10.5 

11.2 

11.9 

11.8 

** 

* 

*

*

18.7 

7.3

3.3 

12.3 

52.7

47.7

56.9

57.2

86.0

45.8

25.9 

15.3 

11.1 

6.3 

36.7 

17.8 

6.4 

22.1 

4.8 

5.3 

33.0 

25.4 

19.5 

8.6 

24.7 

Idaho 

43,306 
Estimated number of CSHCN: All statistics are based on parental reports

66 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

13.9

9.4 

16.2 

16.3 

16.1 

11.8 

13.3 

14.2 

14.0 

14.0 

15.1 

16.0 

14.1 

* 

* 

*

14.5 

7.5

5.9 

10.4 

23.4 

12.9 

7.4 

3.7 

37.8 

13.0 

4.4 

16.7 

4.9 

7.0 

36.2 

23.4 

17.9 

8.5 

21.7 

60.3

45.1

59.3

62.7

89.8

44.2

Illinois 

451,776 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 67

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.6

10.6 

19.2 

19.9 

18.7 

14.5 

20.4 

15.8 

15.5 

16.2 

17.0 

17.2 

14.5 

* 

* 

*

17.7 

8.9

**

15.3 

59.3

54.6

61.8

63.1

94.3

41.1

23.8 

10.7 

9.2 

4.2 

32.7 

16.7 

2.7 

20.0 

5.7 

5.9 

29.7 

20.1 

21.1 

9.4 

24.3 

Indiana 

266,494 
Estimated number of CSHCN: All statistics are based on parental reports

68 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.2

8.5

16.2

17.6

16.0

12.3

15.1

15.7

14.1

12.6

14.4

14.0

20.9

*

*

*

24.1

8.2

**

21.3

18.4

11.4

5.6

1.2

28.2

10.7

3.2

12.7

3.6

3.9

25.3

21.7

19.3

6.2

17.0

64.7

57.4

68.6

65.6

92.9

47.3

Iowa

95,094
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 69

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.0

10.3 

17.3 

20.4 

18.7 

13.2 

17.7 

15.1 

15.4 

16.6 

16.4 

16.3 

18.7 

* 

*

* 

24.6 

9.9

4.2 

16.3 

65.6

55.3

62.9

68.5

92.5

50.3

21.2 

11.8 

9.3 

3.1 

30.3 

12.0 

3.2 

11.4 

5.6 

4.5 

30.5 

21.9 

21.4 

8.0 

20.1 

Kansas 

108,024 
Estimated number of CSHCN: All statistics are based on parental reports

70 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

18.5 

13.0 

21.7 

20.8 

20.5 

16.4 

25.7 

16.9 

16.0 

16.5 

18.4 

18.3 

20.3 

* 

* 

* 

20.0 

12.2 

** 

17.5 

24.9 

16.5 

6.0 

2.4 

31.9 

12.9 

4.6 

15.9 

5.0 

6.4 

35.7 

15.6 

19.0 

14.5 

21.8 

58.6

47.3

64.7

57.4

91.4

42.8

Kentucky 

181202 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 71

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.8

10.4 

17.4 

16.5 

17.3 

12.1 

16.8 

13.5 

13.9 

15.2 

14.5 

15.8 

12.8 

* 

* 

* 

23.7 

14.1

** 

16.9 

62.2

49.6

65.5

54.3

89.3

41.0

24.6 

18.8 

8.3 

5.1 

28.2 

12.2 

4.0 

15.8 

8.8 

6.1 

34.7 

19.8 

19.8 

12.1 

25.3 

Louisiana 

162,116 
Estimated number of CSHCN: All statistics are based on parental reports

72 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

† No CSHCN were identified among predominantly Spanish-speaking Hispanics in the

survey sample. 

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

17.7

9.5 

19.8 

22.1 

20.9 

14.3 

27.5 

19.5 

15.1 

15.3 

17.4 

17.4 

** 

* 

*

*

23.9 

19.3

† 

21.0 

26.3 

14.2 

7.0 

2.5 

25.4 

15.2 

5.4 

15.5 

4.3 

3.0 

28.5 

17.2 

19.3 

9.2 

24.6 

60.7

51.7

70.0

70.1

87.6

49.0

Maine 

48,891 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 73

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.5

9.5 

17.9 

18.6 

18.4 

12.4 

17.8 

13.2 

14.5 

16.3 

15.7 

17.4 

14.3 

* 

* 

*

17.2 

9.8

5.4 

18.8 

54.8

45.6

65.5

65.7

89.3

37.5

24.1 

13.7 

6.3 

3.0 

30.8 

16.5 

4.6 

20.9 

5.6 

4.2 

37.7 

23.5 

17.5 

8.1 

25.8 

Maryland 

216,984 
Estimated number of CSHCN: All statistics are based on parental reports

74 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.4

10.2 

17.9 

20.6 

19.6 

13.0 

19.9 

17.6 

14.8 

16.2 

16.5 

17.2 

14.6 

* 

* 

* 

24.4 

14.0

10.8 

16.7 

23.7 

14.9 

5.2 

1.2 

32.7 

11.1 

5.2 

13.9 

4.8 

3.6 

31.2 

20.4 

15.0 

8.0 

24.7 

57.1

45.7

63.1

75.8

87.6

46.6

Massachusetts 

237,838 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 75

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.4 

9.7 

16.4 

19.5 

18.5 

12.3 

19.1 

13.8 

14.5 

15.6 

15.3 

15.4 

15.6 

* 

* 

* 

19.7 

12.7

** 

16.8 

56.4

46.0

60.8

68.8

90.9

40.8

24.7 

14.2 

6.7 

2.7 

35.7 

16.6 

5.7 

22.9 

5.6 

8.6 

35.3 

19.7 

16.1 

11.0 

25.6 

Michigan 

387,008 
Estimated number of CSHCN: All statistics are based on parental reports

76 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.4 

8.7 

15.6 

18.7 

17.3 

11.4 

13.3 

15.3 

13.4 

15.2 

14.5 

14.4 

19.5 

* 

* 

* 

14.3 

8.3

** 

15.5 

19.8 

10.1 

7.0 

2.6 

30.0 

12.9 

3.7 

18.9 

4.8 

4.6 

29.2 

23.8 

18.3 

7.2 

21.1 

60.3

51.8

66.3

64.9

90.7

52.9

Minnesota 

177,668 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 77

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.0 

12.1 

17.4 

15.8 

17.0 

13.0 

17.2 

14.5 

13.5 

14.5 

14.9 

15.7 

13.9 

* 

* 

*

23.7 

11.0

** 

16.4 

60.4

45.0

58.8

51.4

90.9

30.9

24.2 

17.1 

11.9 

4.2 

34.7 

16.7 

2.9 

18.8 

6.2 

8.7 

38.4 

16.5 

19.4 

14.0 

23.1 

Mississippi 

111,852 
Estimated number of CSHCN: All statistics are based on parental reports

78 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.2

9.0 

19.5 

19.8 

19.3 

12.9 

18.3 

16.4 

14.5 

16.7 

16.2 

15.6 

17.8 

* 

*

*

22.4 

12.6

** 

18.7 

19.5 

12.8 

6.3 

3.1 

31.0 

14.6 

3.1 

14.3 

7.9 

5.6 

27.8 

19.4 

15.6 

9.0 

19.5 

64.1

51.8

64.8

62.1

90.1

54.4

Missouri 

223,070 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 79

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

† No CSHCN were identified among predominantly Spanish-speaking Hispanics in the

survey sample. 

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

13.6

7.9 

13.9 

18.1 

15.9 

11.3 

18.0 

12.8 

12.5 

12.2 

13.4 

13.4 

** 

* 

11.2

*

15.2 

14.0

†

14.4 

56.5

45.9

55.2

55.7

88.6

46.2

28.7 

18.7 

17.4 

10.4 

33.5 

21.8 

7.6 

23.4 

7.4 

9.5 

37.7 

26.2 

25.3 

12.3 

22.0 

Montana 

27,853 
Estimated number of CSHCN: All statistics are based on parental reports

80 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.6

8.6 

17.4 

18.0 

16.0 

13.1 

13.8 

14.6 

14.5 

15.0 

15.5 

15.3 

15.0 

* 

* 

* 

20.4 

7.2

** 

12.1 

19.8 

11.6 

6.4 

3.1 

30.2 

10.4 

4.0 

20.4 

3.5 

4.9 

28.0 

24.6 

18.7 

8.6 

17.2 

65.7

54.2

65.9

63.1

91.9

54.4

Nebraska 

62,759 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 81

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

10.4 

6.7 

11.1 

13.4 

11.8 

8.9 

8.6 

10.7 

10.7 

10.9 

12.1 

12.5 

14.5 

* 

* 

* 

10.8 

5.7

3.5 

10.3 

47.5

41.2

53.5

56.3

82.6

41.7

28.5 

17.4 

17.8 

10.2 

37.0 

23.0 

6.9 

27.5 

7.0 

7.5 

40.6 

23.7 

23.2 

11.7 

27.2 

Nevada 

65,900 
Estimated number of CSHCN: All statistics are based on parental reports

82 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.6

9.6 

18.5 

20.3 

19.8 

13.1 

22.4 

19.2 

16.2 

14.9 

16.4 

16.3 

23.1 

* 

* 

* 

20.1 

18.4

** 

25.5 

21.9 

12.6 

7.0 

2.3 

28.1 

14.0 

5.0 

16.0 

3.6 

4.4 

30.0 

18.8 

18.6 

6.1 

25.5 

60.0

49.6

67.3

79.9

85.8

51.6

New Hampshire 

50,365 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 83

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

13.3 

8.1 

15.3 

16.1 

15.9 

10.7 

13.7 

12.2 

12.9 

13.8 

13.8 

14.6 

13.7 

7.7 

* 

* 

14.7 

10.5

5.0 

16.4 

55.4

40.8

59.9

71.7

88.0

37.9

25.0 

11.7 

8.7 

3.3 

36.6 

16.1 

4.6 

22.2 

5.2 

4.7 

39.1 

25.7 

17.4 

12.5 

25.5 

New Jersey 

286,826 
Estimated number of CSHCN: All statistics are based on parental reports

84 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.1 

7.3 

14.4 

14.4 

13.6 

10.7 

10.6 

11.6 

13.4 

13.2 

13.6 

15.2 

13.3 

* 

9.2 

* 

17.5 

10.7

4.6 

13.6 

25.8 

17.3 

14.0 

5.5 

35.7 

21.4 

6.9 

25.9 

4.7 

7.5 

38.5 

19.9 

20.4 

13.0 

25.1 

53.2

41.6

56.6

64.1

85.7

33.7

New Mexico 

59,535 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 85

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.7 

8.5 

14.1 

15.3 

14.6 

10.7 

12.6 

13.0 

13.9 

11.3 

13.5 

13.9 

15.3 

2.8 

* 

* 

18.5 

9.0

5.8 

12.6 

59.0

45.2

62.1

67.7

90.6

38.4 

23.7

14.8 

7.4 

2.0 

34.7 

13.5 

4.0 

22.7 

6.3 

5.2 

33.4 

16.8 

17.8 

8.6 

25.7 

New York 

572,503 
Estimated number of CSHCN: All statistics are based on parental reports

86 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.4 

10.1 

17.7 

18.4 

18.1 

12.7 

14.7 

17.2 

14.8 

15.3 

16.1 

17.0 

14.1 

* 

* 

* 

22.8 

6.4

3.5 

13.6 

21.3 

13.4 

7.1 

2.4 

30.8 

14.9 

4.1 

13.3 

5.8 

7.5 

35.7 

18.0 

18.3 

9.6 

22.2 

58.3

46.5

63.7

65.0

89.3

39.9

North Carolina 

333,895 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 87

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.2 

6.4 

14.6 

15.4 

14.1 

10.3 

14.4 

13.1 

10.8 

12.8 

12.1 

12.2 

** 

* 

12.1 

* 

12.8 

11.4

** 

12.6 

63.0

51.2

67.9

57.5

92.3

51.2

20.4 

12.8 

9.6 

5.3 

26.1 

10.9 

3.5 

15.6 

6.3

7.3 

30.9 

21.9 

18.5 

9.1 

18.1 

North Dakota 

16,541 
Estimated number of CSHCN: All statistics are based on parental reports

88 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.2 

9.7 

19.6 

19.0 

18.4 

13.7 

19.0 

17.6 

14.4 

15.7 

16.1 

15.4 

20.1 

* 

* 

* 

17.0

14.9

**

18.1 

25.2 

15.4 

7.1 

2.1 

32.0 

14.2 

4.6 

13.8 

5.2 

5.4 

27.5 

16.6 

16.0 

10.0 

23.4 

65.4

55.6

64.6

65.1

92.2

48.5

Ohio 

445,205 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 89

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.5 

11.2 

19.5 

19.1 

18.9 

14.1 

18.3 

17.0 

15.3 

16.3 

16.9 

16.0 

17.8 

* 

19.4 

* 

23.3 

9.3 

** 

16.1 

56.9

49.7

61.6

61.4

90.3

43.7

26.4 

14.3 

12.3 

4.9 

31.5 

18.5 

5.5 

19.8 

5.1 

8.0 

32.8 

19.9 

19.8 

9.0 

18.9 

Oklahoma 

141,129 
Estimated number of CSHCN: All statistics are based on parental reports

90 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

13.7

8.6 

14.7 

17.3 

14.8 

12.4 

12.6 

15.6 

12.9 

13.6 

14.4 

14.5 

14.8 

* 

* 

* 

18.1 

8.7

5.5 

12.9 

30.3 

18.8 

11.2 

5.7 

31.3 

21.7 

6.3 

23.5 

6.0 

7.1 

31.1 

20.0 

18.1 

8.7 

29.2 

55.5

47.4

61.5

60.0

88.3

43.7

Oregon 

116,988 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 91

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.4 

8.8 

17.2 

19.4 

17.8 

12.8 

17.5 

17.2 

14.1 

14.1 

15.1 

14.8 

18.1 

* 

* 

* 

15.7 

13.6

6.9 

17.2 

60.6

45.8

66.2

69.7

89.5

46.0

25.0 

15.2 

7.6 

2.0 

30.1 

16.1 

4.8 

28.0 

4.5 

5.6 

33.6 

16.8 

18.2 

11.0 

24.4 

Pennsylvania 

430,640 
Estimated number of CSHCN: All statistics are based on parental reports

92 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

17.2 

10.1 

19.9 

20.7 

20.8 

13.5 

19.9 

21.0 

15.8 

14.8 

17.7 

18.3 

14.6 

* 

* 

* 

23.2 

12.4

8.2 

21.0 

21.3 

14.9 

6.2 

1.4 

26.8 

12.6 

4.3 

10.2 

4.7 

2.3 

30.1 

12.6 

14.0 

9.6 

23.0 

61.4

50.9

68.2

74.2

87.6

37.6

Rhode Island 

41,783 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 93

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.2 

10.2 

18.6 

16.7 

18.6 

11.9 

17.4 

16.0 

14.0 

14.3 

15.3 

16.0 

14.0 

* 

*

* 

17.9 

6.7

** 

14.3 

60.4

53.1

61.2

60.0

91.7

37.2

20.7 

14.2 

9.1 

5.2 

33.0 

14.1 

5.7 

14.5 

5.4 

4.8 

30.7 

18.2 

20.5 

10.9 

21.8 

South Carolina 

157,802 
Estimated number of CSHCN: All statistics are based on parental reports

94 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.6 

8.3 

14.6 

15.1 

13.8 

11.4 

13.3 

12.4 

12.4 

12.7 

12.6 

12.8 

** 

* 

11.5 

* 

15.6 

8.9

** 

11.5 

22.8 

13.3 

6.6 

3.3 

29.7 

11.6 

4.9 

16.6 

4.4 

3.9 

30.2 

23.9 

19.9 

8.8 

21.0 

63.4

53.8

66.6

56.3

90.4

50.6

South Dakota 

23,644 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 95

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

16.4 

11.9 

18.5 

18.9 

18.1 

14.7 

20.4 

15.3 

14.2 

17.3 

16.5 

16.8 

14.5 

* 

* 

* 

21.9 

10.9

** 

19.5 

60.7

52.7

67.7

59.8

91.8

39.6

22.8 

14.3 

6.9 

3.2 

28.3 

14.2 

3.0 

15.3 

5.0 

6.4 

30.7 

22.6 

17.9 

11.1 

22.8 

Tennessee 

229,744 
Estimated number of CSHCN: All statistics are based on parental reports

96 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

12.6 

8.3 

14.7 

15.1 

14.7 

10.5 

9.6 

11.5 

14.0 

15.4 

15.6 

16.6 

14.0 

* 

* 

* 

17.4 

8.6

4.6 

13.9 

22.8 

12.9 

14.9 

6.7 

33.7 

17.6 

4.6 

25.4 

4.8 

8.5 

37.8 

19.5 

18.8 

9.4 

25.3 

57.9

46.3

58.2

58.6

88.2

37.1

Texas 

806,746 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 97

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

11.0 

6.0 

12.2 

16.0 

12.5 

9.4 

9.0 

10.7 

11.0 

12.3 

11.4 

11.5 

** 

* 

* 

* 

10.6 

6.8

2.6 

12.3 

55.1

52.3

59.5

62.1

86.2

42.5

28.1 

16.4 

11.4 

4.2 

34.1 

20.2 

8.4 

19.0 

4.0 

5.0 

31.4 

26.4 

22.1 

7.8 

19.9 

Utah 

82,502 
Estimated number of CSHCN: All statistics are based on parental reports

98 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

† No CSHCN were identified among predominantly Spanish-speaking Hispanics in the

survey sample. 

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.0 

7.6 

16.7 

19.1 

17.2 

12.6 

23.8 

18.3 

13.0 

13.1 

14.8 

14.5 

** 

* 

* 

* 

21.3 

21.1

† 

22.7 

21.7

12.3 

6.6 

2.1 

25.8 

12.9 

6.3 

17.3 

4.5 

3.0 

27.8 

16.3 

15.2 

8.2 

22.5 

59.8

51.6

69.4

74.4

89.3

52.0

Vermont 

19,937 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 99

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.8 

8.4 

20.1 

19.1 

18.3 

13.3 

22.0 

14.3 

14.1 

15.9 

16.4 

17.1 

17.3 

* 

* 

* 

16.5

6.0

** 

14.0 

59.8

43.9

63.7

64.5

89.6

37.8

22.1 

14.4 

7.6 

2.0 

31.7 

13.1 

6.0 

20.8 

5.4 

6.6 

34.6 

22.7 

17.4 

8.1 

24.9 

Virginia 

289,176 
Estimated number of CSHCN: All statistics are based on parental reports

100 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.4 

8.1 

16.0 

18.5 

16.3 

12.4 

14.1 

17.6 

13.7 

13.1 

15.0 

14.8 

21.4 

6.7 

* 

* 

20.0 

7.8

4.4 

12.3 

26.6 

18.4 

8.3 

3.2 

29.3 

21.5 

7.6 

24.6 

4.0 

6.3 

31.7 

18.6 

19.1 

6.3 

22.7 

55.7

48.3

65.3

68.5

85.4

47.3

Washington 

214,583 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 101

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

18.3 

11.4 

20.5 

22.1 

20.4 

16.0 

23.6 

19.4 

15.6 

14.9 

18.1 

17.9 

14.2 

* 

* 

* 

30.2 

19.6

** 

20.2 

59.2

50.5

64.2

64.6

89.7

41.3

26.9 

22.3 

6.8 

1.9 

31.7 

14.0 

4.5 

19.7 

5.4 

3.5 

31.6 

18.0 

18.2 

14.3 

21.1 

West Virginia 

69,567 
Estimated number of CSHCN: All statistics are based on parental reports

102 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

15.3 

9.5 

17.5 

18.3 

17.6 

12.9 

17.7 

14.8 

14.7 

15.0 

15.6 

15.1 

19.0 

* 

* 

* 

18.1

10.0

** 

16.9 

23.2 

11.4 

6.4 

1.6 

34.4 

15.5 

5.9 

15.1 

5.1 

5.2 

28.8 

20.2 

17.2 

9.6 

21.7 

65.3

54.6

63.0

62.0

90.0

44.5

Wisconsin 

197,791 
Estimated number of CSHCN: All statistics are based on parental reports

The National Survey of Children with Special Health Care Needs Chartbook 2005–2006 103

Prevalence 

of CSHCN State % National %

Percent of children who 13.9

have special health 

care needs

Age

Age 0–5 years 8.8

Age 6–11 years 16.0

Age 12–17 years 16.8

Sex

Male 16.1

Female 11.6

Poverty Level

0–99% FPL 13.9

100–199% FPL 14.0

200–399% FPL 13.6

400% FPL or more 14.0

Hispanic Origin and Race

Non-Hispanic 15.0

White 15.5

Black 15.0

Asian 6.3

American Indian/ 14.5

Alaska Native 

Native Hawaiian/ 11.5

Pacific Islander 

Multiple races 17.9

Hispanic 8.3

Spanish language 4.6

household 

English language 13.1

household 

* Due to the small size of this group in the

State population, data have been suppressed

to protect respondents’ confidentiality.

**Estimate suppressed as it does not meet the

standard for reliability or precision.

Indicator State % National %

Child Health

CSHCN whose conditions affect their activities 24.0

usually, always, or a great deal

CSHCN with 11 or more days of school absences due to illness 14.3

Health Insurance Coverage

CSHCN without insurance at some point in the past year 8.8

CSHCN without insurance at time of survey 3.5

Currently insured CSHCN whose insurance is inadequate 33.1

Access to Care

CSHCN with any unmet need for specific health care services 16.1

CSHCN with any unmet need for family support services 4.9

CSHCN needing a referral who have difficulty getting it 21.1

CSHCN without a usual source of care when sick 5.7

(or who rely on the emergency room) 

CSHCN without any personal doctor or nurse 6.5

Family-Centered Care

CSHCN without family-centered care 34.5

Impact on Family

CSHCN whose families pay $1,000 or more out of pocket 20.0

in medical expenses per year for the child

CSHCN whose conditions cause financial problems for the family 18.1

CSHCN whose families spend 11 or more hours per week 9.7

providing or coordinating the child’s health care

CSHCN whose conditions cause family members 23.8

to cut back or stop working 

Core Outcomes (Percent of CSHCN achieving outcome) State % National %

CSHCN whose families are partners in decision making at all 57.4

levels, and who are satisfied with the services they receive 

CSHCN who receive coordinated, ongoing, comprehensive care 47.1

within a medical home 

CSHCN whose families have adequate private and/or 62.0

public insurance to pay for the services they need 

CSHCN who are screened early and continuously 63.8

for special health care needs 

CSHCN whose services are organized in ways 89.1

that families can use them easily 

Youth with special health care needs who receive the services 41.2

necessary to make appropriate transitions to adult health care, 

work, and independence 

14.5 

8.6 

17.6 

17.0 

16.6 

12.2 

20.9 

13.8 

13.9 

12.9 

14.5 

14.4 

** 

* 

* 

*

20.8 

12.6

** 

15.2 

57.5

49.1

60.0

63.4

88.8

47.0

23.7 

18.0 

8.8 

3.6 

34.9 

15.7 

4.1 

19.2 

5.1 

6.7 

32.8 

29.2 

21.3 

12.0 

22.8 

Wyoming 

16,456 
Technical Appendix

104 The National Survey of Children with Special Health Care Needs Chartbook 2005–2006

Survey Methods

The National Survey of Children with Special Health Care Needs (NSCSHCN) was fielded using the State and Local Area Integrated Telephone

Survey (SLAITS) mechanism. SLAITS is conducted by the National Center for

Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC). It

uses the same large-scale random-digit-dial sampling frame as the CDC’s

National Immunization Survey.8

Over 4 million telephone numbers were randomly generated for inclusion

in the NS-CSHCN. After eliminating numbers that were determined to be nonresidential, nonworking, or assigned to cell phones, the remaining numbers

were called to identify households with children under 18 years of age. When

households with children were identified, all children in the household were

screened for special health care needs.

In households where two or more children were identified as having

special needs, one child was randomly sampled to be the subject of the

detailed interview. 

The goal was to complete approximately 750 interviews regarding a sampled child with special health care needs in each of the 50 States and the

District of Columbia. The number of households screened in each State in order

to identify these 750 CSHCN varied depending on the prevalence of CSHCN in

each State. 

Estimates for Louisiana are based on interviews conducted in 2006 only;

interviews conducted before the August and September 2005 hurricanes are

not included.

Questionnaire

CSHCN were identified using the CSHCN Screener, which consists of five

questions concerning common health care consequences experienced by

CSHCN. The questionnaire for sampled CSHCN included sections regarding

health and functional status, access to care, care coordination, satisfaction with

care, health insurance coverage, adequacy of health care coverage, impact of

the child’s special needs on the family, and demographic information about the

child, respondent, and household.

The questionnaire was translated into Spanish, Mandarin, Cantonese,

Vietnamese, and Korean. Overall, 944 special-needs interviews were conducted in Spanish and 21 were conducted in the four Asian languages. 

The respondent was the parent or guardian in the household who was

most knowledgeable about the health and health care of the children under

18 years of age. For 78 percent of the children, the respondent was the mother. Respondents for the remaining children were fathers (16 percent) or other

relatives or guardians (6 percent). 

Data Collection

Data collection began on April 5, 2005 and ended on February 5, 2007,

with interviews conducted from telephone centers in Chicago, Illinois; Downers

Grove, Illinois; and Las Vegas, Nevada. A computer-assisted telephone interviewing system was used to collect the data. From 192,083 households with

children, 364,481 children were screened for special health care needs and

40,465 interviews were completed regarding CSHCN. The special-needs interview completion rate, which is the proportion of interviews completed after a

child with special needs was selected in the household, was 96.2 percent. The

national weighted response rate, which includes the cooperation rate as well

as the resolution rate (the proportion of telephone numbers identified as residential or nonresidential) and the screening completion rates (the proportion of

households successfully screened for children and for CSHCN), was 56.1 percent. Overall response rates ranged from 49.3 percent in New Jersey to 68.3

percent in North Dakota. 

Data Analysis

For producing the population-based estimates in this report, the data

records for each screening interview and for each special needs interview

were assigned a sampling weight. These weights are based on the probability

of selection of each household telephone number within each State, with

adjustments that compensate for households that have multiple telephone numbers, for households without telephones, and for nonresponse. 

With data from the U.S. Census Bureau, the weights were also adjusted

by age, sex, race, ethnicity, income, highest level of education among adults in

the household, and household size to provide a dataset that was more representative of each State’s population of children less than 18 years of age.

Analyses were conducted using statistical software that accounts for the

weights and the complex survey design. Responses of “don’t know” and

“refuse to answer” were counted as missing data.

Accuracy of the Results

The data from the NS-CSHCN are subject to the usual variability associated with sample surveys. Small differences between survey estimates

may be due to random survey error and not to true differences among children or across States.

The precision of the survey estimates is based on the sample size and

the measure of interest. Estimates at the national level will be more precise

than estimates at the State level. Estimates of the prevalence of special

health care needs among all children will be more precise than estimates of

the health and health care of CSHCN. The margin of error for the national

prevalence estimate is 0.2 percentage points. For national estimates of the

health and health care for all CSHCN, the maximum margin of error is 1.3 percentage points. For State prevalence estimates, the maximum margin of error

is 1.3 percentage points. For the State indicators, the maximum margin of

error is 7.4 percentage points, though most of the State indicators have a

margin of error less than 4 percentage points.

Availability of the Data

Except for data suppressed to protect the confidentiality of the survey

subjects, all data collected in the NS-CSHCN are available to the public on

the NCHS and HRSA’s Maternal and Child Health Bureau Web sites. 

For children in racial groups that do not represent at least 5 percent of

the population in a State, the child’s race was coded as “other.”

In other cases, information on the child’s race is included in the data set

but not reported in this chartbook. Because the number of interviewed children in a racial group was small, the relative standard error of the estimate

was greater than 30 percent. Estimates with relative standard errors greater

than 30 percent are not considered reliable or precise. Data documentation

and additional details on the methodology are also available online. 

Endnotes

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

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

Pediatrics, 102(1):137–140, 1998.

2 Bethell CD, Read D, Stein RE, Blumberg SJ, Wells N, Newacheck PW. Identifying children with special health care needs: Development and evaluation of a short

screening instrument. Ambulatory Pediatrics, 2002 Jan-Feb; 2(1):38–48.

3 Chen E, Martin AD, Matthews KA. Understanding health disparities: The role of race

and socioeconomic status in children’s health. American Journal of Public Health,

96:702–708, 2006.

4 Mendoza FS, Fuentes-Afflick E. Latino children’s health and the family-community health

promotion model. Western Journal of Medicine, 170:85–92, 1999.

5 Newacheck P, Halfon N. Prevalence and impact of disabling childhood chronic conditions. American Journal of Public Health. 88(4):610–617, 1998.

6 Benson V, Marano MA. Current estimates from the National Health Interview Survey.

National Center for Health Statistics. Vital and Health Statistics, 10(199), 1998.

7 American Academy of Pediatrics Committee on Children with Disabilities. Care coordination: Integrating health and related systems of care for children with special

health care needs. Pediatrics 1999;104(4): 978-981.

8 Zell ER, Ezzati-Rice TM, Battaglia MP, Wright RA. National immunization survey: 

The methodology of a vaccination surveillance system. Public Health Reports

115:65–77, 2000.

Maternal and Child Health Bureau • 5600 Fishers Lane Room 18-05 • Rockville, MD 20857 • 301 443 2170 • www.mchb.hrsa.gov