Nursing Research

Disparities in Access to Easy-to-Use Services for Children with Special Health Care Needs

Myra Rosen-Reynoso2 • Michelle V. Porche1 • Ngai Kwan2 • Christina Bethell3 •

Veronica Thomas2 • Julie Robertson4 • Eva Hawes4 • Susan Foley2 •

Judith Palfrey5

Published online: 4 January 2016

� Springer Science+Business Media New York 2015

Abstract Objectives Families, clinicians and policy-

makers desire improved delivery of health and related

services for children with special health care needs

(CSHCN). We analyzed factors associated with ease of use

in obtaining such services. We also explored what were

specific difficulties or delays in receiving services. By

examining data from the National Survey of Children with

Special Health Care Needs (NS-CSHCN 2009–2010) and

using the revised criteria for ‘‘ease of use,’’ we were able to

assess the percentage of parents who reported that their

experiences seeking services for their children met those

criteria. Methods We performed Chi square tests to

examine associations between the independent variables

and their relationship to the difficulties or delays assessed

in the survey; including: eligibility, availability of services,

waiting lists, cost, and access to information. We used

logistic regression to determine the association of meeting

the ‘‘ease of use’’ criteria with socio-demographic,

complexity of need, and access variables. Results Overall, a

third of families of CSHCN (35.3 %) encounter difficulties,

delays, or frustrations in obtaining health and related ser-

vices. The lack of access to health and community services

in this study fell most heavily on children from racial/

ethnic minority backgrounds, those in poverty, and those

with complex emotional/behavioral or developmental

needs and functional limitations. Conclusions for Practice

CSHCN require services from a broad array of providers

across multiple systems. Unfortunately, there are certain

difficulties that hamper the accessibility of these systems.

These findings underscore the need for both practice-level

response and systems-level reform to ensure equitable dis-

tribution of health and community resources.

Keywords Special-needs children � Disparities � Survey � Medical home

& Myra Rosen-Reynoso [email protected]

Michelle V. Porche

[email protected]

Ngai Kwan

[email protected]

Christina Bethell

[email protected]

Veronica Thomas

[email protected]

Julie Robertson

[email protected]

Eva Hawes

[email protected]

Susan Foley

[email protected]

Judith Palfrey

[email protected]

1 School of Education, Boston University, Two Silber Way,

Boston, MA 02215, USA

2 Institute for Community Inclusion, University of

Massachusetts, Boston, 100 Morrissey Blvd., Boston,

MA 02125, USA

3 Johns Hopkins University, Baltimore, MD, USA

4 Oregon Health and Science University, Portland, OR, USA

5 Children’s Hospital Boston, 300 Longwood Avenue, Boston,

MA 02115, USA

123

Matern Child Health J (2016) 20:1041–1053

DOI 10.1007/s10995-015-1890-z

Significance Statement

What is already known on this subject? Differences in ease

of use of community-based services for parents of children

with special health care needs exist and are associated with

race/ethnicity and complexity of need.

What does this study add? Using the NS-CSHCN, this

study probes the specific types of difficulties and delays

that CSHCN encounter in their experiences accessing

health and related services. Large gaps are identified in

eligibility for community-based services as well as delays

in obtaining these services. The problems are most pro-

nounced for children from minority backgrounds, those in

poverty, those without health insurance and children with

complex emotional/behavioral and functional disorders.

The medical home plays a significant role in ameliorating

these problems, but less than half of CSHCN have access to

a medical home.

Introduction

An estimated 15.1 % of the U.S. child population have

special health care needs [30], defined as chronic physical,

developmental, behavioral, or emotional conditions

requiring a type or amount of health and related services

beyond typical needs [22]. These children depend on

obtaining a range of services (e.g., medical care, dental

care, specialized therapies, counseling, medical equipment,

special education, and early intervention) from the health

care and other systems (e.g., schools, child care centers,

community programs, home care) [25]. Yet over a third of

families report difficulties, delays, and frustration in

obtaining community-based services, thus not meeting ease

of use criteria [30]. In this paper, we present findings from

the 2009/2010 National Study of Children with Special

Health Care Needs (NS-CSHCN) describing correlates of

the provision of health and related services organized in an

‘‘easy to use’’ system of community-based services.

In 1989, the U.S. Maternal and Child Health Bureau

developed a National Agenda for Children with Special

Health Care Needs (CSHCN), calling for a comprehensive,

coordinated, culturally competent, community-based sys-

tems of services based on family-centered principles for

children and youth with special health care needs [25]. To

assess progress in this aim, a single question about ‘‘ease of

use’’ was added to the 2001 NS-CSHCN; only three-

quarters of parents reported that services were organized in

a way that ‘‘makes them easy to use’’ [26]. The 2005/2006

NS-CSHCN asked if there were ‘‘any difficulties trying to

use services,’’ and nearly 90 % of respondents reported

‘‘no’’ [24], obscuring details about the challenges families

face. In both cases, a single question about ‘‘ease of use’’

yielded little discrimination among groups of CSHCN, and

did not allow investigation of the various factors that

constitute ‘‘ease of use,’’ or information about specific

barriers or facilitators, which are critical for improving

service delivery for families. However, recent amendments

to the NS-CSHCN support more extensive investigation of

ease of use, enabling a more comprehensive understanding

of the difficulties that families of CSHCN face in obtaining

services.

The Technical Expert Panel for the 2009/2010 National

Survey revised the method of measurement and redefined

‘‘ease of use’’ as a multidimensional construct including

difficulties, delays and/or frustrations. In this paper, we

analyze the association of (1) child characteristics, (2)

socio-demographic factors, and (3) access measures (in-

surance and medical home) with the more elaborated ‘‘ease

of use’’ construct. We also investigate parental reports of

specific types of difficulties, delays and/or frustrations. To

our knowledge, this study is the first to provide analyses of

this multidimensional construct and related barriers for

parents of CSHCN based on socio-demographic charac-

teristics, complexity of condition(s), and provider

measures.

Background

Initial results using the single-item version of this measure

found racial disparities in reported ‘‘ease of use,’’ with

Black and Hispanic parents more likely than white parents

to report problems using services [26]. Hawaii-specific data

on the same 2001 NS-CSHCN found that families of

children with ‘‘above-routine service use, specialized

therapies, and mental health services’’ were the most likely

group to have difficulties using community-based services

[4]. Nageswaran et al. [23] using the 2005 NS-CSHCN

reported children with functional limitations were 4.8 times

more likely to experience difficulty than those without.

More recently, Strickland et al. [30] using the 2009–2010

NS-CSHCN, presented prevalence rates for six health care

system quality indicators (ease of use was one element in

this systems analysis). Findings of socio-demographic

disparities in the system quality of health care for CSHCN

informs this investigation of the elaborated ease of use

indicator in order to derive new knowledge that can be used

to improve experiences of families.

There is substantial evidence that families of CSHCN

encounter many obstacles within complex health and

related services systems, including difficulty acquiring

specialty services, therapies, respite care, genetic counsel-

ing, mental health services and dental health [11, 17, 18,

20, 32]. Ethnic and linguistic minority families, and urban

and rural families consistently report decreased access to

1042 Matern Child Health J (2016) 20:1041–1053

123

various services [9, 13, 26, 27, 31]. The lack of or incon-

sistent health insurance coverage, high cost of care and

other out-of-pocket costs pose considerable stumbling

blocks to care [1, 21]. Analysis of this latest data from the

2009/2010 NS-CSHCN provides an opportunity to identify

specific and cumulative difficulties, delays and/or frustra-

tions (eligibility, service availability, waiting list, cost, lack

of information) that vary by group characteristics.

Methods

Data Source

The 2009/2010 NS-CSHCN is a population-based, random-

digit-dial telephone survey of parents/guardians of

CSHCN. The State and Local Area Integrated Telephone

Survey mechanism provided the sampling frame [8]. The

Child and Adolescent Health Measurement Initiative’s

(CAHMI) CSHCN Screener was used for 372,698 children

under 18 years of age from 196,159 households to identify

40,242 CSHCN whose parents or legal guardians com-

pleted the in-depth telephone survey. Thus, all references

to ease of service use refer to parent/guardian reports.

Statistical adjustments were made to account for house-

holds without telephones and to reflect the total number of

children in the U.S. The dataset was weighted to the

American Community Survey (ACS) demographic esti-

mates of children; landline and cell phones use were

identified and included as part of weighting plan.

Study Variables

Dependent Variable

The CAHMI team revised the ‘‘ease of use’’ measure

through a systematic question development process. Items

were iteratively specified after 12 rounds of interviews.

Cognitive testing showed that the measure had face

validity, was understood as intended and was reliable.

Family focus groups before and during development con-

firmed the items represented the most essential components

of ‘‘ease of use.’’ Items were then pretested with 132

households, resulting in moderate internal consistency

(Cronbach’s Alpha = 0.691). Item correlations demon-

strated linked yet differentiated information (correlations

ranged from 0.249 to 0.424).

The ‘‘ease of use’’ measure is a dichotomous composite

variable derived from two sets of questions. First, parents

responded to the following six YES/NO items: ‘‘During the

past 12 months did you have any difficulties or delays

getting services for [child] because…

1. …[he/she] was not eligible for services? 2. …the services [he/she] needed were not available in

your area?

3. …there were waiting lists, backlogs, or other problems getting appointments?

4. … of issues related to cost? 5. …you had trouble getting the information you needed? 6. …for any other reason?

Secondly, parents were asked, ‘‘During the past

12 months, how often have you been frustrated in your

efforts to get services for [child]?’’ responding on a 4-point

Likert scale (never, sometimes, usually, or always), which

was dichotomized as problematic (usually/always) or not

(sometimes/never). Families must report positively on two

criteria to meet the ‘‘ease of use’’ indicator: have no dif-

ficulties or delays in getting services (items 1–6); and, be

only ‘‘sometimes’’ or ‘‘never frustrated’’ in efforts to get

services.

Independent Variables

All composite variables are used as coded in the CAHMI

2012 public dataset and described below.

Child Characteristics Age was coded in developmental

categories: under 1 year old, 1–4 years old, 5–9 years old,

10–14 years old, and 15 years or above. Coding for race/

ethnicity was categorized by the National Center for Health

Statistics (NCHS) as non-Hispanic White, non-Hispanic

Black, Hispanic, non-Hispanic other race (including Asian,

American Indian, Alaska Native, or Native Hawaiian/

Pacific Islander, which was combined into ‘‘other’’ cate-

gory to meet the NCHS confidentiality standards due to

low numbers of respondents). Hereafter, the terms White,

Black, and Hispanic will be used as per the terms used in

the NS-CSHCN.

Family Characteristics and Household Descrip-

tors Parental education was coded as less than, equal to,

or greater than high school graduation. Household income

was based on federal poverty guidelines for a family of

four in the year 2009 and classified as 0–99%, 100–199 %,

200–399 %, and above 400 %. Primary household lan-

guage was coded as English or as language other than

English. Family structure was categorized as two-parent

biological/adopted family, two-parent step-parent family,

single mother, and other family structure.

Complexity of Needs Two items measured the complexity

of conditions: (1) CSHCN with Emotional Behavioral

Developmental conditions (EBD) (coded as 1/0); and (2)

met or did not meet (coded as 1/0) criteria for functional

Matern Child Health J (2016) 20:1041–1053 1043

123

limitations and/or other conditions not primarily managed

by medications.

Access Factors ‘‘Having a medical home’’ was assessed

through a composite of 19 survey questions with a score of

1/0 for meeting criteria of all five components: CSHCN

had (1) a personal doctor or nurse, (2) a usual source of

care, (3) family-centered care, (4) no problems with

referrals, and (5) care coordination. Insurance coverage

was measured as private only, public only, both private and

public, or uninsured.

Analyses

We conducted descriptive analyses to determine preva-

lence rates of dependent and independent variables.

Bivariate analyses and multivariate logistic regression were

used to assess associations between the independent vari-

ables and reported ‘‘ease of use.’’ Analyses were conducted

with Stata 11.0 SE software [29] using sample weights to

adjust for the complex survey design. The 2009/10 NS-

CSHCN included imputed data for the following variables:

household income, race/ethnicity, highest education level

of any parent in the household, primary household lan-

guage and total number of adults in the household (using

multiple imputation, commonly used for handling missing

at random nonresponse data in a survey that would hinder

analyses) [2]. Other missing data (i.e., cases where insur-

ance coverage was reported as ‘‘unknown’’) was handled

by listwise deletion.

Tests of collinearity in the multivariate analyses showed

no substantial correlations among independent variables.

Independent variables were included in the analyses in a

sequential manner, beginning with a base model (Model 1)

containing only the individual child characteristics, fol-

lowed by family demographics and structure variables

(Model 2). Because there is overlap for CSHCN who have

EBD and functional limitations (11.5 % of the sample have

both conditions), these two variables were entered sepa-

rately with EBD status (Model 3a) and functional limita-

tion (3b). Accessibility factors (insurance coverage and

having a medical home) were added separately to EBD in

Model 4a and to functional limitations in Model 4b.

Chi square tests were conducted to examine associations

between the independent variables and their relationship to

five of the six types of difficulties or delays assessed in the

survey including: eligibility of services; local availability

of services; waiting lists, backlogs or other problems get-

ting appointments; cost-related issues; and access to

information. Because ‘‘other reason’’ lacks specificity with

no further details available in the public dataset, it was

excluded from this analysis. The subset of respondents

included those who reported that they had experienced

difficulties, delays and/or frustrations.

Results

The weighted sample characteristics for CSHCN (Table 1)

consisted of more boys (59.5 %) than girls (40.5 %); racial/

ethnic distribution was more reflective of U.S. population

with 16.5 % Hispanic, 59.4 % Non-Hispanic White,

16.2 % Black, and 7.9 % other race. Few infants (1.5 %)

were identified, while children were represented across age

groups. Roughly 22 % of the sample fell within the lowest

Federal Poverty Level while over a quarter (27.2 %) were

above 400 % FPL. Only 6.7 % of the sample spoke a

language other than English at home. The majority of the

sample’s family structure consisted of two parent families

(57.1 %). With regards to complexity of needs, the sample

consisted of 31.4 % with EBD and 23.5 % with functional

limitations. Slightly more than half of the sample was

privately insured (52.8 %), while 35.5 % received public

insurance and only 3.5 % were uninsured. Forty-three

percent had a medical home.

Overall, 65.4 % of the sample reported that services met

the ease of use criteria. Table 1 shows group level results

with pair-wise Chi square tests that highlight characteris-

tics that showed statistically significant associations with

meeting ease of use criteria. The characteristics that were

negatively associated with meeting ease of use criteria

were male child, Black or Hispanic race/ethnicity, presence

of EBD and/or functional limitations, being at or below

200 % of poverty, speaking a language other than English,

living in a single parent household, and being uninsured.

Chi square results of reasons for failing to meet ease of

use criteria are shown in Table 2. There were differences

across all groups regarding eligibility, with higher rates

reported for boys, Hispanics, older children compared to

younger children, by parents with lower education and

income, in non-English speaking homes, for children with

more complex needs, and lacking insurance or a medical

home. Service availability barriers were associated with

having EBD and/or functional limitations, lower incomes,

single parent or reconstituted families, insurance status,

and not having a medical home. Although waiting lists

were reported as a problem affecting roughly half of all the

children, it was more likely a problem for children with

EBD. The barrier of service costs was associated with

males, older children, those CSHCN with EBD and/or

functional limitations, lower income and without medical

homes. Nearly 78 % of uninsured families indicated that

they had difficulties and delays due to cost. Lack of

information was more often reported for CSHCN who

were: male, non-White, reported to have EBD and/or

1044 Matern Child Health J (2016) 20:1041–1053

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Table 1 Sample characteristics of CSHCN and bivariate association of meeting ease of use criteria CSHCN characteristics (total sample weighted N = 10,322,416)

Sample characteristics of CSHCN Bivariate association

of meeting ease of use

criteria and CSHCN

characteristics

Sample weighted N Proportion

[95 % CI]

Proportion

[95 % CI]

Gender

Male 6,140,593 59.5 %

[58.6, 60.4]

65.7 %

[64.5, 66.9]

Female 4,181,822 40.5 %

[39.6, 41.4]

64.9 %

[63.5, 66.4]

Race/ethnicity

a. Hispanic b,c

1,705,390 16.5 %

[15.8, 17.3]

59.3 %

[56.5, 62.0]

b. Non Hispanic White a,c,d

6,133,799 59.4 %

[58.5, 60.4]

67.9 %

[66.9, 68.8]

c. Non Hispanic Black a,b

1,673,062 16.2 %

[15.5, 17.0]

64.7 %

[62.0, 67.3]

d. Non Hispanic Other Race b

810,165 7.9 %

[7.4, 8.4]

61.1 %

[57.6, 64.5]

Age categories

Under 1 year old 149,370 1.5 %

[1.3, 1.7]

70.9 %

[63.5, 77.3]

1–4 years 2,136,993 20.7 %

[19.9, 21.5]

67.2 %

[65.2, 69.2]

5–9 years 3,055,355 29.6 %

[28.8, 30.4]

65.4 %

[63.8, 67.0]

10–14 years 3,552,176 34.4 %

[33.5, 35.3]

64.5 %

[62.8, 66.1]

15 years and above 1,428,522 13.8 %

[13.2, 14.5]

64.3 %

[61.9, 66.6]

Parental education

a. \ High schoolb 1,127,731 10.9 % [10.2, 11.7]

62.4 %

[58.8, 66.0]

b. High school a

2,059,255 19.9 %

[19.2, 20.8]

65.2 %

[62.9, 67.4]

c. [ High school 7,135,431 69.1 % [68.2, 70.1]

65.9 %

[64.9, 66.9]

Income

a. 0–99 % FPL c,d

2,283,909 22.1 %

[21.3, 22.9]

59.8 %

[57.7, 61.9]

b. 100–199 % FPL c,d

2,259,288 21.9 %

[21.1, 22.7]

59.4 %

[57.2, 61.6]

c. 200–399 % FPL a,b,d

2,966,785 28.7 %

[27.9, 29.6]

65.5 %

[63.9, 67.1]

d. Above 400 % FPL a,b,c

2,812,434 27.2 %

[26.5, 28.0]

74.7 %

[73.2, 76.0]

Household language

a. English b

9,628,330 93.3 %

[92.7, 93.8]

66.0 %

[65.1, 66.9]

Matern Child Health J (2016) 20:1041–1053 1045

123

functional limitations, children of parents with lower than a

high school education, lowest poverty level, not living in a

two-parent family, without medical homes, and uninsured

or received public insurance.

There were statistically significant associations between

group characteristics and the mean total number of barriers

reported. The groups of CSHCN whose parents reported

the highest number of barriers were: 10–14 years (1.93

barriers), males (1.92 barriers), Hispanic (2.0 barriers),

reported to have EBD (2.08 barriers) or functional limita-

tions (2.08 barriers), children of parents who had less than

high school education (1.99 barriers), 0–99 % FPL (2.04

Table 1 continued

Sample characteristics of CSHCN Bivariate association

of meeting ease of use

criteria and CSHCN

characteristics

Sample weighted N Proportion

[95 % CI]

Proportion

[95 % CI]

b. Language other than English a

694,086 6.7 %

[6.2, 7.3]

57.1 %

[52.5, 61.6]

Family structure

a. Two parent family [biological/adopted] b,c,d

5,803,283 57.1 %

[56.2, 58.1]

69.3 %

[68.2, 70.4]

b. Two parent family [step parents] a,c

981,395 9.7 %

[9.1, 10.2]

63.3 %

[60.4, 66.2]

c. Single mother a,b

2,595,517 25.6 %

[24.7, 26.4]

59.1 %

[57.0, 61.1]

d. Other a

777,679 7.7 %

[7.2, 8.2]

61.9 %

[58.5, 65.3]

Complexity of needs

a. With EBD b

3,240,878 31.4 %

[30.5, 32.3]

49.7 %

[48.1, 51.4]

b. Without EBD a

7,081,538 68.6 %

[67.7, 69.5]

72.6 %

[71.5, 73.6]

a. With functional limitations b

2,423,017 23.5 %

[22.7, 24.3]

47.6 %

[45.6, 49.6]

b. Without functional limitations a

7,899,399 76.5 %

[75.7, 77.3]

70.8 %

[69.5, 71.8]

Insurance

a. Private only b,c,d

5,444,499 52.8 %

[51.9, 53.7]

71.9 %

[70.8, 72.9]

b. Public only a,d

3,657,654 35.5 %

[34.6, 36.4]

60.4 %

[58.7, 62.1]

c. Both private and public a,d

848,916 8.2 %

[7.7, 8.8]

60.3 %

[56.9, 63.5]

d. Uninsured a,b,c

358,674 3.5 %

[3.1, 3.9]

30.5 %

[25.7, 35.9]

Medical home

a. Did not have medical home b

5,883,781 57.0 %

[56.1, 57.9]

53.1 %

[51.8, 54.4]

b. Had medical home a

4,438,635 43.0 %

[42.1, 43.9]

81.7 %

[80.7, 82.7]

FPL Federal Poverty Level

Superscripts [a, b, c, d, e]

indicate corresponding pair-wise comparisons that are significantly different at the 0.05 level

1046 Matern Child Health J (2016) 20:1041–1053

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Table 2 Chi square tests of factors associated with experiencing difficulties/delays in services for the sub-sample that reported one or more barriers to ease of use criteria

Sub-sample

weighted N

Eligibility Service

availability

Waiting

list

Cost Lack of

information

Mean total

no. of barriers

Gender p \ .05 p \ .05 p \ .05 p \ .05 Male 2,256,727 32.8 % 33.3 % 50.3 % 44.4 % 26.5 % 1.92

Female 1,579,280 27.8 % 30.5 % 51.6 % 39.8 % 24.1 % 1.80

Race/ethnicity p \ .001 p \ .05 p \ .001 Hispanic 751,456 37.3 % 34.4 % 50.5 % 42.6 % 29.9 % 2.00

Non Hispanic White 2,119,627 26.8 % 31.1 % 49.7 % 43.6 % 22.2 % 1.79

Non Hispanic Black 636,411 35.1 % 31.5 % 51.9 % 39.1 % 28.2 % 1.91

Non Hispanic

Other Race

338,436 32.5 % 35.3 % 57.8 % 42.1 % 31.0 % 2.04

Age categories p \ .05 p \ .01 p \ .001 Under 1 year old 45,397 19.9 % 25.9 % 40.0 % 31.2 % 33.5 % 1.56

1–4 years 752,701 28.4 % 30.6 % 51.9 % 37.1 % 22.9 % 1.77

5–9 years 1,141,955 29.8 % 31.1 % 52.5 % 42.4 % 26.4 % 1.89

10–14 years 1,351,447 34.1 % 34.6 % 48.9 % 44.5 % 25.4 % 1.93

15 years and above 554,429 28.5 % 31.0 % 52.1 % 46.2 % 26.6 % 1.90

Parental education p \ .05 p \ .01 p \ .001 \High school 476,351 40.3 % 35.0 % 45.5 % 39.8 % 32.7 % 1.99 High school 763,455 34.6 % 35.4 % 52.1 % 41.3 % 25.9 % 1.93

[High school 2,606,123 27.9 % 30.7 % 51.6 % 43.4 % 24.0 % 1.84 Income p \ .05 p \ .05 p \ .001 p \ .001 p \ .001 0–99 % FPL 991,444 37.1 % 38.5 % 52.0 % 39.2 % 32.5 % 2.04

100–199 % FPL 983,503 33.8 % 33.9 % 50.4 % 46.9 % 25.1 % 1.95

200–399 % FPL 1,084,313 28.3 % 29.0 % 49.5 % 48.2 % 22.6 % 1.83

Above 400 % FPL 786,669 22.4 % 26.4 % 52.4 % 33.4 % 21.0 % 1.65

Household language p \ .05 p \ .01 English 3,525,273 29.7 % 31.6 % 51.2 % 42.9 % 25.2 % 1.87

Language other than English 320,656 42.1 % 38.0 % 47.6 % 38.0 % 28.8 % 1.97

Family structure p \ .05 p \ .05 p \ .05 p \ .01 Two parent family [biological/adopted] 1,924,004 27.6 % 30.0 % 50.8 % 42.4 % 23.7 % 1.81

Two parent family [step parents] 379,001 31.2 % 36.8 % 53.6 % 42.1 % 22.5 % 1.92

Single mother 1,147,846 36.0 % 35.2 % 52.3 % 44.7 % 28.5 % 2.01

Other 320,392 31.0 % 28.3 % 46.7 % 37.6 % 28.9 % 1.79

Complexity of needs p \ .001 p \ .001 p \ .001 p \ .05 p \ .001 p \ .001 With EBD 2,085,344 35.7 % 36.5 % 55.2 % 44.9 % 31.0 % 2.08

Without EBD 1,760,585 26.5 % 28.5 % 47.4 % 40.5 % 20.8 % 1.70

p \ .01 p \ .001 p \ .001 p \ .05 p \ .001 With functional limitations 2,492,816 34.1 % 38.4 % 52.6 % 45.9 % 32.3 % 2.08

Without Functional limitations 1,353,114 28.9 % 28.8 % 50.1 % 40.7 % 21.7 % 1.77

Insurance p \ .05 p \ .05 p \ .05 p \ .05 p \ .05 Private only 1,573,671 22.9 % 26.3 % 47.9 % 42.5 % 20.3 % 1.67

Public only 1,530,144 34.2 % 36.6 % 55.3 % 37.6 % 31.1 % 2.00

Both private and public 348,609 31.0 % 38.8 % 52.9 % 36.1 % 23.8 % 1.87

Uninsured 264,019 59.8 % 35.0 % 43.9 % 77.8 % 27.8 % 2.45

Medical home p \ .05 p \ .05 p \ .01 p \ .001 p \ .001 Did not have medical home 2,856,982 33.6 % 35.2 % 53.8 % 44.1 % 29.0 % 2.00

Had medical home 845,162 19.5 % 21.4 % 42.2 % 37.0 % 10.8 % 1.41

FPL Federal Poverty Level

Matern Child Health J (2016) 20:1041–1053 1047

123

barriers), those speaking language other than English (1.97

barriers), uninsured (2.45barriers) and without a medical

home (2.00 barriers).

Multivariate Analyses

Demographic Correlates

Table 3 shows Hispanic parents were the least likely to

indicate that services met the criteria for ease of use across

models even when adjusting for family demographics,

while disparity diminished for Black CSHCN compared to

the White reference group after adjustment for all demo-

graphic variables, EBD and functional limitation variables

and access measures (Table 3 Models 4a and 4b). In these

final adjusted models (Table 3 Models 4a and 4b), reduced

odds of ‘‘ease of use’’ for girls with special health care

needs (for both EBD and functional limitations) was sta-

tistically significant. Further, families consisting of single

mothers had statistically significantly lower odds of finding

services easy to use across all models presented (OR

range = .745 to .859).

Complexity of Needs

The adjusted odds of CSHCN with EBD receiving services

that met the criteria for ‘‘ease of use’’ was .385 % less than

non-EBD children (Model 3a). Speaking a household lan-

guage other than English was a statistically significant

factor for reduced odds (OR = .782) of meeting the ‘‘ease

of use’’ criteria for CSHCN with functional limitations

(Model 3b).

Access Measures

In the final models (Table 3 Models 4a and 4b), factors

related to access, namely insurance coverage and access to

a medical home, were added into the models examining

CSHCN with EBD, as well as CSHCN with functional

limitations. Being uninsured compared to having private

insurance was associated with statistically significant

decreased odds (OR = .23) of reporting ‘‘ease of use’’ for

both CSHCN with EBD and CSHCN with functional lim-

itations. Families with public insurance also showed

smaller but statistically significant decreased odds of

reporting ‘‘ease of use’’ compared to those with private

insurance (for both EBD and functional limitations). In

contrast, meeting the criteria for ‘‘ease of use’’ of services

was positively associated with having a medical home.

Children, both with EBD and functional limitations, who

did not have a medical home had statistically significant

decreased odds of reporting easy-to-use services that were

similar in magnitude to being uninsured.

Discussion

More refined measures available in the 2009/2010 NS-

CSHCN allow for a nuanced understanding of specific

factors associated with ease of use and identification of

socio-demographic correlates of those factors. The lack of

access to health and community services in this study fell

most heavily on children from Hispanic and minority lan-

guage backgrounds, those in poverty, and those with more

complex conditions. In contrast to analysis with the origi-

nal single question measure [26] there was not a statisti-

cally significant disparity for Black children in adjusted

models. Results highlight family characteristics associated

with encountering problems and types of problems faced.

Such information is helpful for clinicians, policy makers,

and family organizations.

Eligibility for services was a primary factor for all high-

risk groups. Service availability and lackof information were

not as critical for more affluent families with private insur-

ance and a medical home. Being on a waiting list was a

difficulty for parents of children with EBD and/or functional

limitations. Cost was twice as likely to be named as a barrier

for parents of uninsured children compared to those insured.

Implications for Policy and Practice

When over a third of families of CSHCN encounter diffi-

culties, delays and frustrations in obtaining health and

related services, it is clear that the MCHB goal of having

‘‘easy to use’’ systems remains unrealized. In this time of

unprecedented health care reform, it is vital to pay attention

to whether or not these policy changes narrow the persis-

tent financial, organizational and sociocultural barriers that

families experience in accessing services, including the

impact of discrimination and language barriers in navi-

gating complex systems of care.

Inability to access primary and specialty care means

increased reliance on emergency services and increased

likelihood of hospitalization for preventable illness [6].

Such lack of access predisposes minority children and

those with complex problems to higher levels of adult

health consequences, as well as poorer school and career

functioning [7, 28].

Medical Home

A key finding is the protective nature of the medical home,

serving as a clarion call for public policies that promote

medical homes for all children. Although only 43 % of

CSHCN had a medical home, they were much more likely

to have services that were easy to use. Racial/ethnic and

language minority and poor children are less likely to have

1048 Matern Child Health J (2016) 20:1041–1053

123

T a b le

3 L o g it m o d e ls

fo r m e e ti n g e a se

o f u se

c ri te ri a

M o d e l 1 : in d iv id u a l

d e m o g ra p h ic s

M o d e l 2 : a d d in g fa m il y

d e m o g ra p h ic s

M o d e l 3 a : E B D

st a tu s ?

a d d in g

c o m p le x it y o f n e e d s

M o d e l 3 b :

fu n c ti o n a l li m it a ti o n

st a tu s ?

a d d in g

c o m p le x it y o f n e e d s

M o d e l 4 a : E B D

st a tu s ?

a d d in g

a c c e ss

m e a su re s

M o d e l 4 b :

fu n c ti o n a l li m it a ti o n

st a tu s ?

a d d in g

a c c e ss

m e a su re s

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

G e n d e r

F e m a le

0 .9 6 7 [0 .8 9 3 , 1 .0 4 8 ]

0 .9 6 8 [0 .8 9 3 , 1 .0 5 0 ]

0 .9 0 8 [0 .8 3 5 , 0 .9 8 7 ]a

0 .9 4 0 [0 .8 6 5 , 1 .0 2 2 ]

0 .8 9 3 [0 .8 1 8 ,

0 .9 7 5 ]a

0 .9 1 4 [0 .8 3 7 ,

0 .9 9 7 ]a

M a le

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

R a c e /e th n ic it y

H is p a n ic

0 .6 9 0 [0 .6 1 2 , 0 .7 7 9 ]a

0 .8 0 8 [0 .7 0 4 , 0 .9 2 8 ]a

0 .7 8 9 [0 .6 8 7 , 0 .9 0 8 ]a

0 .8 1 8 [0 .7 0 9 ,

0 .9 4 4 ]a

0 .8 5 9 [0 .7 3 8 ,

0 .9 9 9 ]a

0 .8 8 7 [0 .7 6 0 , 1 .0 3 4 ]

N o n H is p a n ic

B la c k

0 .8 4 6 [0 .7 4 8 , 0 .9 5 6 ]a

1 .0 6 6 [0 .9 3 9 , 1 .2 1 0 ]

0 .9 6 9 [0 .8 4 9 , 1 .1 0 7 ]

1 .0 3 6 [0 .9 0 8 , 1 .1 8 2 ]

1 .1 2 6 [0 .9 8 2 , 1 .2 9 1 ]

1 .1 9 7 [1 .0 4 5 ,

1 .3 7 1 ]a

N o n H is p a n ic

O th e r R a c e

0 .7 4 4 [0 .6 4 2 , 0 .8 6 2 ]a

0 .7 9 9 [0 .6 9 0 , 0 .9 2 6 ]a

0 .7 8 1 [0 .6 7 3 , 0 .9 0 6 ]a

0 .7 8 8 [0 .6 8 0 ,

0 .9 1 4 ]a

0 .8 6 0 [0 .7 3 8 , 1 .0 0 3 ]

0 .8 6 4 [0 .7 4 5 , 1 .0 0 3 ]

N o n H is p a n ic

W h it e

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

A g e c a te g o ri e s

U n d e r 1 y e a r o ld

1 .3 9 7 [0 .9 8 3 , 1 .9 8 5 ]

1 .4 2 9 [1 .0 0 6 , 2 .0 2 9 ]a

1 .1 0 3 [0 .7 6 7 , 1 .5 8 6 ]

1 .3 9 5 [0 .9 6 5 , 2 .0 1 7 ]

1 .0 0 9 [0 .7 0 9 , 1 .4 3 7 ]

1 .2 0 7 [0 .8 4 3 , 1 .7 2 8 ]

1 – 4 y e a rs

1 .1 7 5 [1 .0 2 7 , 1 .3 4 5 ]a

1 .2 1 0 [1 .0 5 7 , 1 .3 8 6 ]a

1 .0 8 4 [0 .9 4 1 , 1 .2 4 9 ]

1 .1 9 8 [1 .0 4 0 ,

1 .3 8 0 ]a

1 .0 6 3 [0 .9 1 5 , 1 .2 3 6 ]

1 .1 5 0 [0 .9 9 1 , 1 .3 3 6 ]

5 – 9 y e a rs

1 .0 8 2 [0 .9 5 8 , 1 .2 2 3 ]

1 .1 1 0 [0 .9 8 2 , 1 .2 5 6 ]

1 .0 6 8 [0 .9 4 0 , 1 .2 1 3 ]

1 .1 0 1 [0 .9 6 8 , 1 .2 5 1 ]

1 .0 3 5 [0 .9 0 4 , 1 .1 8 4 ]

1 .0 5 7 [0 .9 2 4 , 1 .2 0 8 ]

1 0 – 1 4 y e a rs

1 .0 3 6 [0 .9 1 6 , 1 .1 7 1 ]

1 .0 6 6 [0 .9 4 3 , 1 .2 0 5 ]

1 .0 5 6 [0 .9 3 1 , 1 .1 9 9 ]

1 .0 4 7 [0 .9 2 3 , 1 .1 8 8 ]

1 .0 3 0 [0 .9 0 2 , 1 .1 7 6 ]

1 .0 1 5 [0 .8 9 0 , 1 .1 5 8 ]

1 5 y e a rs

a n d a b o v e

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

P a re n ta l e d u c a ti o n

\ H ig h sc h o o l

1 .3 6 3 [1 .1 4 7 , 1 .6 2 0 ]a

1 .3 8 7 [1 .1 5 8 , 1 .6 6 1 ]a

1 .3 9 6 [1 .1 6 8 ,

1 .6 6 9 ]a

1 .6 1 9 [1 .3 3 5 ,

1 .9 6 2 ]a

1 .6 3 0 [1 .3 4 7 ,

1 .9 7 2 ]a

H ig h sc h o o l

1 .3 6 3 [1 .2 1 8 , 1 .5 2 6 ]a

1 .3 4 6 [1 .1 9 7 , 1 .5 1 2 ]a

1 .3 6 3 [1 .2 1 2 ,

1 .5 3 3 ]a

1 .4 4 3 [1 .2 7 7 ,

1 .6 3 1 ]a

1 .4 6 3 [1 .2 9 2 ,

1 .6 5 7 ]a

[ H ig h sc h o o l

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

In c o m e

0 – 9 9 %

F P L

0 .4 8 4 [0 .4 2 3 , 0 .5 5 3 ]a

0 .5 2 6 [0 .4 5 7 , 0 .6 0 4 ]a

0 .5 2 6 [0 .4 5 8 ,

0 .6 0 4 ]a

0 .6 8 5 [0 .5 7 5 ,

0 .8 1 6 ]a

0 .6 8 1 [0 .5 7 4 ,

0 .8 0 9 ]a

1 0 0 – 1 9 9 %

F P L

0 .4 8 6 [0 .4 3 3 , 0 .5 4 7 ]a

0 .5 0 3 [0 .4 4 6 , 0 .5 6 6 ]a

0 .5 1 2 [0 .4 5 5 ,

0 .5 7 7 ]a

0 .6 1 8 [0 .5 3 6 ,

0 .7 1 2 ]a

0 .6 2 9 [0 .5 4 6 ,

0 .7 2 5 ]a

2 0 0 – 3 9 9 %

F P L

0 .6 4 7 [0 .5 8 4 , 0 .7 1 6 ]a

0 .6 5 3 [0 .5 8 9 , 0 .7 2 3 ]a

0 .6 6 1 [0 .5 9 7 ,

0 .7 3 2 ]a

0 .6 9 6 [0 .6 2 5 ,

0 .7 7 6 ]a

0 .7 0 7 [0 .6 3 5 ,

0 .7 8 7 ]a

A b o v e 4 0 0 %

F P L

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

H o u se h o ld

la n g u a g e

Matern Child Health J (2016) 20:1041–1053 1049

123

T a b le

3 c o n ti n u e d

M o d e l 1 : in d iv id u a l

d e m o g ra p h ic s

M o d e l 2 : a d d in g fa m il y

d e m o g ra p h ic s

M o d e l 3 a : E B D

st a tu s ?

a d d in g

c o m p le x it y o f n e e d s

M o d e l 3 b :

fu n c ti o n a l li m it a ti o n

st a tu s ?

a d d in g

c o m p le x it y o f n e e d s

M o d e l 4 a : E B D

st a tu s ?

a d d in g

a c c e ss

m e a su re s

M o d e l 4 b :

fu n c ti o n a l li m it a ti o n

st a tu s ?

a d d in g

a c c e ss

m e a su re s

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

O d d s ra ti o [9 5 %

C I]

L a n g u a g e o th e r th a n E n g li sh

0 .8 3 6 [0 .6 7 4 , 1 .0 3 6 ]

0 .8 0 0 [0 .6 3 7 , 1 .0 0 5 ]

0 .7 8 2 [0 .6 2 2 ,

0 .9 8 1 ]a

0 .9 4 1 [0 .7 4 2 , 1 .1 9 3 ]

0 .9 2 3 [0 .7 2 8 , 1 .1 7 0 ]

E n g li sh

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

F a m il y st ru c tu re

T w o p a re n t fa m il y [s te p

p a re n ts ]

0 .8 6 7 [0 .7 5 6 , 0 .9 9 5 ]a

0 .9 9 2 [0 .8 6 3 , 1 .1 4 0 ]

0 .8 6 1 [0 .7 5 0 ,

0 .9 8 9 ]a

1 .0 2 9 [0 .8 8 6 , 1 .1 9 6 ]

0 .9 1 5 [0 .7 8 7 , 1 .0 6 3 ]

S in g le

m o th e r

0 .7 4 5 [0 .6 7 0 , 0 .8 2 9 ]a

0 .8 1 8 [0 .7 3 2 , 0 .9 1 3 ]a

0 .7 5 9 [0 .6 8 0 ,

0 .8 4 8 ]a

0 .8 5 9 [0 .7 6 6 ,

0 .9 6 4 ]a

0 .8 0 4 [0 .7 1 7 ,

0 .9 0 2 ]a

O th e r

0 .7 7 5 [0 .6 6 4 , 0 .9 0 5 ]a

0 .9 6 9 [0 .8 2 4 , 1 .1 3 9 ]

0 .7 9 8 [0 .6 7 9 ,

0 .9 3 7 ]a

1 .0 6 5 [0 .8 9 3 , 1 .2 7 1 ]

0 .9 0 2 [0 .7 5 6 , 1 .0 7 6 ]

T w o p a re n t fa m il y [b io lo g ic a l/

a d o p te d ]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

1 .0

[R e f]

C o m p le x it y o f n e e d s

W it h E B D

0 .3 8 5 [0 .3 5 7 , 0 .4 1 9 ]a

0 .4 5 1 [0 .4 1 2 ,

0 .4 9 4 ]a

W it h o u t E B D

1 .0

[R e f]

1 .0

[R e f]

W it h fu n c ti o n a l li m it a ti o n s

0 .3 9 2 [0 .3 5 7 ,

0 .4 3 0 ]a

0 .4 3 7 [0 .3 9 7 ,

0 .4 8 2 ]a

W it h o u t fu n c ti o n a l li m it a ti o n s

1 .0

[R e f]

1 .0

[R e f]

In su ra n c e

P u b li c o n ly

0 .8 1 4 [0 .7 1 4 ,

0 .9 2 8 ]a

0 .8 2 7 [0 .7 2 4 ,

0 .9 4 4 ]a

B o th

p ri v a te

a n d p u b li c

0 .8 5 3 [0 .7 1 8 , 1 .0 1 3 ]

0 .8 6 3 [0 .7 2 8 , 1 .0 2 2 ]

U n in su re d

0 .2 3 0 [0 .1 7 7 ,

0 .2 9 8 ]a

0 .2 3 4 [0 .1 7 9 ,

0 .3 0 6 ]a

P ri v a te

o n ly

1 .0

[R e f]

1 .0

[R e f]

M e d ic a l h o m e

D id

n o t h a v e m e d ic a l h o m e

0 .2 9 7 [0 .2 7 2 ,

0 .3 2 5 ]a

0 .2 8 7 [0 .2 6 2 ,

0 .3 1 3 ]a

H a s m e d ic a l h o m e

1 .0

[R e f]

1 .0

[R e f]

a D if fe rs

fr o m

re fe re n c e c a te g o ry

a t p \

0 .0 5

1050 Matern Child Health J (2016) 20:1041–1053

123

access to a medical home [30]. Yet even with access to a

medical home, racial disparities remain with black CSHCN

continuing to have higher odds of unmet needs compared

to white children [5]. When properly constituted, the

medical home can secure ease of use of health and related

services by creating strong referral networks with trusted

medical specialists and other providers. Emphasis on the

medical home within the Affordable Care Act supports

expansion of the coordination function and by extension

some relief of care coordination burden currently falling

upon families. Well-functioning medical homes incorpo-

rate medical and nonmedical community service referrals

into their standard operation to assure that families can

obtain the optimum benefit from early intervention,

schools, special education, speech, occupational and

physical therapy, counseling and family services, transition

planning and future career assessment.

Practice Recommendations

There is value in providers’ assessing their practices for

difficulties, delays, and/or frustrations, using strategies

such as parent advisory boards, focus groups, and/or peri-

odic parent surveys. Hearing directly from families about

transportation, wait times, practice hours, communication,

and referral pathways can inform the practice team about

how to improve services. Research with Latina mothers

found that the preference for bilingual practitioners was

secondary to the importance of good relationships with

providers and effective communication, whether in English

or Spanish [10]. School nurses and school-based health

centers can play important roles in care coordination and

communication across systems [3]. CSHCN have a dis-

proportionate vulnerability to any weaknesses or frag-

mentation in the systems they rely on [7], thus improving

communication between families, communities, and pro-

viders is essential for optimizing child outcomes.

Approximately one-quarter of families named lack of

information as a factor in experiencing difficulty or delay

in service, highlighting the contribution of up-to-date

information about educational, recreational, vocational,

and transition services in a comprehensible language.

Periodic updates of providers’ community-based resources

directories can help identify cultural brokers in cases

where language and cultural barriers inhibit ease of use.

Family peer support programs can facilitate the sharing of

critical knowledge that helps increase access to services.

A pilot project that tested family facilitators to lead

support groups for families with transition-age youth

showed that parents were effective leaders in sharing

information that empowered parents’ in accessing ser-

vices, while also providing emotional support and a sense

of belonging [16]. In addition, opportunities to meet with

families in similar circumstances may ease the strain of

enduring long wait lists for services, a factor named by

over half of the sample. For CSHCN with more complex

medical needs, the caregiver challenges include providing

care coordination, financial problems, family member

having to leave work, and difficulty accessing nonmedical

services [28]. Results from the 2005–2006 NS-CSHCN

found that 33.1 % of families reported difficulty in

accessing nonmedical services such as early intervention,

child care, vocational education, rehabilitation, and rela-

ted community programs [19]. These are important ser-

vices that can have profound impact on both parental

stress levels and child outcomes.

Many of the difficulties highlighted in this study reside

at the systems level, where essential health benefits should

include the primary care, specialty services, therapies and

mental health services that CSHCN require. Information

about benefits should be available in all languages and

written clearly so that caregivers with low literacy can

understand the services offered and how to obtain them. A

review of the research on use of medical interpreters found

that professional interpreters improved care more than ad

hoc interpreters and that quality of care was comparable for

patients without language barriers [15]. Continuous health

insurance coverage is essential for CSHCN. As the

Affordable Care Act is implemented and is designed to

take over gaps that the Children’s Health Insurance Plan

(CHIP) currently covers, access to benefits will need to be

monitored closely to assess coverage of CSHCN [12].

Limitations

The secondary nature of the data set did not allow us to

consider qualitative experiences in ‘‘ease of use’’ of ser-

vices, especially community-based services. The data are

based on parental self-report, which may be subject to

recall, positivity, or nonresponse bias. It should also be

highlighted that while our study focused on three minority

racial/ethnic groups, these populations are extremely

heterogeneous; therefore, caution should be exercised in

making generalizations that are based on these broad cat-

egories. Changes in the significance levels of racial/ethnic

disparities in ease of use across the logit models likely

reflect small effect sizes that are sensitive to the inclusion

of access variables in those models.

In conclusion, the challenge in the coming years is for

policy makers, clinicians, family-based organizations, and

other agencies to conduct targeted research on the persis-

tent socio-economic, racial/ethnic and linguistic disparities

in service availability. Findings from this study echo those

of other researchers that have indicated that a life course

approach to health and related services for CSHCN might

help minimize poor health outcomes [7, 14]. Essential to

Matern Child Health J (2016) 20:1041–1053 1051

123

this approach is the recognition that children’s health and

functioning are influenced by a myriad of factors including

their families, communities, and the broader system of

services, not simply their health care provider. Efforts to

address barriers for CSHCN so that they receive services

they need during developmentally sensitive periods will

reduce risk for poor outcomes and promote resilience and

healthy development.

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