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 Epidemiol Health > Volume 40; 2018 > Article
Raouafi, Achiche, and Raison: Socioeconomic disparities and difficulties to access to healthcare services among Canadian children with neurodevelopmental disorders and disabilities

### OBJECTIVES

The aims of this study were to identify the associations of levels of severity of neurodevelopmental disorders and disabilities (NDD/D) in children with their household socioeconomic status (SES) and their frequency of visits to a healthcare provider, and to examine how the severity of disability varied with these determinants among NDD/D subgroups, in order to inform possible social policy changes and to improve access to the healthcare system.

### METHODS

Data from the 2006 Participation and Activity Limitation Survey on children aged 5-14 years, collected by Statistics Canada, were analyzed (n=7,072 and weighted n=340,340). Children with NDD/D constituted those with impairments in motor, speech, neurosensory, and psychological functioning, as well as those who had issues with learning/cognition and social interactions. The weighted sample size for this group was n=111,630 (total sample size for children with limitations: n=174,810). We used logistic regression to assess the associations of household SES and frequency of visits to a healthcare provider with disability level. We included NDD/D subgroups as interaction terms in the model. Multiple correspondence analysis (MCA) was conducted to develop a profile of disability level.

### RESULTS

After-tax low income, family assistance, out-of-pocket expenses, needing but not receiving health services from a social worker, condition of the dwelling, and residential location were associated with the severity of NDD/D. Using MCA, 2 disability profiles could be identified based on access to healthcare, household income status, and condition of the dwelling.

### CONCLUSIONS

More social interventions are needed to reduce difficulties in accessing healthcare and to diminish the socially determined health inequalities faced by children with NDD/D.

### INTRODUCTION

Neurodevelopmental disorders and disabilities (NDD/D) are a group of disorders that manifest early in a child’s development. These disabilities are characterized by deficits in development that result in neurological, cognitive, behavioural, social, academic, and occupational functioning. Roughly 5% of Canadian children have a disability, and 74% of these disabilities are classified as NDD/D [1]. Over the past half century, the number of people with disabling chronic conditions has increased [2], representing a major public health concern. Some factors associated with the increased prevalence of developmental disabilities are the increased prevalence of preterm birth, infertility treatments, and lack of access to the healthcare system and health insurance coverage [3]. NDD/D can have a lifelong effect on a child’s physical, emotional, social, psychosocial, and academic functioning. The World Report on Disability [4] identified childhood disability as strongly associated with socioeconomic disadvantages (personal and environmental conditions). Inequalities in children’s socioeconomic status (SES), environmental factors, and access to healthcare are well documented [5-7]. However, the role of these inequalities in the developmental trajectories of children with NDD/D is not well known.
We hypothesize that exposure to an adverse social environment, low SES, and lack of access to quality healthcare are factors that may be associated with the severity of NDD/D. Numerous studies have shown that childhood disability is related to disadvantaged circumstances [5,7-9]. For example, Blackburn et al. [8] reported that the household income in households with a disabled child was 13% lower than in households with non-disabled children. Previous studies have shown that people who lived in rural areas experienced worse health and exhibited more health risk behaviours than those who lived in urban areas [10,11]. Beresford & Rhodes [12] suggested that children with disabilities were more likely to live in unsuitable and poor housing than their non-disabled peers. Beyond these factors, the high costs of medical services and inadequate insurance coverage are factors that impact access to the healthcare system. Newacheck & McManus [13] showed that out-of-pocket expenses were 2-3 times higher on average for disabled children than for other children. In this study, we hypothesized that factors such as socioeconomic disadvantages, socioenvironmental exposures, and access to healthcare would be different for children with different disabilities. A better understanding of the relationship between these changeable factors and the severity of disability is needed to inform health service providers so they can establish prevention strategies for the affected populations and reduce the health burden on children with NDD/D and their families.
In this research study, data from the Participation and Activity Limitation Survey (PALS) were used (1) to examine the relationships of SES, environmental exposures, and access to healthcare indicators with the level of disability in children with NDD/D; and (2) to explore how the severity of disability varied with these determinants among NDD/D subgroups.

### Participants

The PALS is a cross-sectional population-based study conducted in the 10 provinces and 3 territories of Canada. The sampling stratum was defined to obtain a profile of individuals with disabilities whose everyday activities are limited because of a health-related condition or problem, considering the enumeration area, age group, and severity of disability. The objective of the PALS was to provide information about children’s characteristics, including age, sex, residence, schooling, socioeconomic details, human aids, medication, difficulties and barriers to healthcare services, and type and severity of disability. Based on the PALS, the total size of the census sample for children with limitations aged 5-14 years was 174,810. The respondents targeted were parents or guardians of a child who answered affirmatively to 2 filtering questions: (1) does the child experience difficulties with hearing, seeing, moving, communicating, learning, or doing other activities; and (2) does the child have a health condition that reduces the child’s ability to participate in various activities. From the census sample, telephone interviews with 7,072 parents were conducted and their self-reports were utilised in this analysis. The development process of the 2006 PALS is described in a technical and methodological report [14]. Among children aged 5-14 years, we limited our analysis to those with NDD/D. Children with NDD/D constitute those with impairments in motor, speech, neurosensory, and psychological functioning, as well as those who have issues with learning/cognition and social interactions. Assignment into 1, 2, or 3 NDD/D subgroups has been described in a previous work by Mâsse et al. [15]. The weighted sample size for this group was n= 111,630. The sampling weights were derived by Statistics Canada [14] and adjusted for patterns of non-response and other child characteristics (age, sex, severity of disability, and province of residence). A proposal of the study to gain access to microdata files in the Research Data Centres at the University of Montreal that presented the objectives and variables to be analysed was accepted by the Social Sciences and Humanities Research Council.

### DISCUSSION

This study was designed to identify which socioeconomic parameters and variables describing access to healthcare indicators were the most pertinent for developing a profile of disability severity among Canadian children aged 5-14 years with NDD/D.
The main result, reported in Tables 2-4, was the strong association between severity of disability and socioeconomic disadvantages including low income status, family assistance, out-of-pocket expenses, and needing but not receiving health services from a social worker. Our results illustrate that the relationships of socioeconomic parameters and healthcare indicators with severity of disability are best understood in concert, rather than separately. These differences were apparent only in certain NDD/D subgroups. As shown in Figure 1, the traditional relationship of lower SES and difficulty accessing healthcare services with poorer health and severe disability emerged among children with speech/language, learning/cognition, social, and psychological impairments.
These findings are consistent with results from other studies in which disability was related to socioeconomic gradients [6,7,12,19, 20]. Our MCA showed that low income status, condition of the dwelling, and healthcare indicators (high medical costs or not having insurance coverage) were the parameters that contributed most to the disability profile of children with NDD/D (Figure 2 and Supplementary Material 2). Both our findings and those of previous studies indicate that disability in children is socially patterned. Most studies comparing children’s disabilities in rural and urban areas have reported that children who lived in rural areas experienced worse health and exhibited more health risk behaviours than those who lived in urban areas [10,11]. These results are in concordance with our findings, specifically for children with social interaction impairments (Figure 1). Our results indicate that severely disabled children (specifically, those with learning/ cognition and psychological impairments) were more likely to live in dwellings needing major or minor repairs than children with mild to moderate disabilities. In the UK, an analysis of the characteristics and circumstances of disabled children found that poor or unsuitable housing was correlated with childhood disability [8]. For children with learning/cognition, social, and psychological impairments, the predicted probability of having a severe disability was significantly higher among families who needed help with housework, family, and personal activities. Out-of-pocket expenses influenced the level of disability in speech/language, social, and psychological impairments; in particular, the risk of severe disability, as depicted in Figure 1, was much higher for children with speech/language, social, and psychological impairments who had out-of-pocket expenses. Stabile & Allin [21], found that out-of-pocket expenses were higher in families with disabled children than in families that did not have disabled children, especially those with special needs.
The association between SES and health is well documented in the literature [22]. Although many risk factors have been identified, their consequences on the developmental trajectories of childhood are poorly understood. The present study adds several new insights, as 3 of our findings deserve additional discussion.
First, uninsured children and children for whom medical services were too expensive were more likely to have a severe to very severe disability. There is evidence that the costs of disability are significant [4], but excess costs of medical services are also probably due to a lack of health insurance coverage and poor health status [23]. This suggests that insurance coverage is related to access to care for children with disabilities [24], and consequently that a lack of insurance coverage is associated with worse health outcomes and increased severity of disability.
Second, we found that children with a severe disability were more likely to live in low income households and dwellings needing repairs. Families of children with a disability have been found to be more likely to live in unsuitable homes and more likely to have poverty-level incomes than families with no disabled children [8,10-12]. Given the income disparities that we found with MCA for disability profiling, our results indicate that children who had a severe disability and social or psychological impairments were more likely both to be from low income households and to have difficulty accessing healthcare services than children who had a less severe disability [25].
Finally, we found that children with a severe to very severe disability were more likely to report social impairments (Table 5). Moreover, our MCA showed that children with a severe disability were more likely to report learning/cognition impairments. This result is not surprising since this limitation was the most common type of disability reported for children aged 5 to 14 [14]. Additionally, social interaction impairments are common behavioural characteristics of individuals with learning disabilities [26,27].
This research study has the following notable strengths. First, it included a nationally representative sample of Canadian children, in contrast to most previous qualitative studies, which included fewer participants to identify relationships between health experiences of disabled children and socioeconomic factors. Second, specific types of NDD/D were included, with both mild to moderate and severe to very severe levels of disability, which contributed to the diversity of the sample.
In a cross-sectional study, the data for risk factors and outcome are simultaneously obtained, so it is difficult to interpret any causal/directional relationship. While the primary outcome variable was disability levels, and the predictor variables for this study were exposure to socioeconomic disadvantages, poor housing, and difficulty accessing healthcare services, this relationship could have been reversed, but the directionality of the relationship could not be investigated. Another limitation of this study is that the PALS contained no information about family structure, parental employment, and education, which may be important factors related to the severity of disability of children with NDD/D. In addition, a recent study showed that the use and frequency of use of assistive mobility devices may impact the severity of disability [28]. Further studies will be needed to validate the proposed analysis including these factors.
In conclusion, exposure to socioeconomic disadvantages, poor housing, and difficulty accessing healthcare services were associated with greater severity of disability among children with NDD/ D. The World Report on Disability [4], makes some recommendations to ensure healthcare equity and to promote a focus on determinants of health of people with disabilities, especially on their living conditions. Some such initiatives have been already implemented in many countries. However, to improve the quality of these interventions and to reduce the health burden of children with NDD/D, more efforts are needed to provide more robust and comprehensive data on disability and to characterize in detail the impact of medical, environmental, and social factors.

### ACKNOWLEDGEMENTS

The analysis presented in this paper was conducted at the Quebec Interuniversity Centre for Social Statistics (QICSS). The views expressed in this paper are those of the authors, and not necessarily those of the QICSS. We wish to thank all staff at the Interuniversity Research Data Centre at the University of Montréal for their support in accessing the data. We would like to thank Ana Segovia for her help in revising the English of the article.

### CONFLICT OF INTEREST

The authors have no conflicts of interest to declare for this study.

### SUPPLEMENTARY MATERIALS

Supplementary Material 1: Table S1 is available at http://www.e-epih.org/.
epih-40-e2018010-supplementary.pdf
Supplementary Material 2: Table S2 is available at http://www.e-epih.org/.
epih-40-e2018010-supplementary2.pdf
##### Figure 1.
Predicted probabilities of disability levels. (A) Learning/cognition×In the past 12 months, frequency of seeing a social worker. (B) Learning/cognition×Family assistance. (C) Learning/cognition×Condition of dwelling. (D) Social×In the past 12 months, frequency of seeing a social worker. (E) Social×Out-of-pocket expenses. (F) Social×Family assistance. (G) Social×Low income status. (H) Psychological×In the past 12 months, frequency of seeing a social worker. (I) Psychological×Out-of-pocket expenses. (J) Psychological×Family assistance. (K) Psychological×Low income status. (L) Psychological×Condition of dwelling.
##### Figure 2.
The column points of the first factor plane of the multiple correspondence analysis (axes 1 and 2).
##### Table 1.
Demographic and descriptive information of children (5-14 years) with NDD/D in PALS
Total (weighted n=111,630, %)
Age (yr)
5-7 23.5
8-11 43.5
12-14 33.0
Sex
Male 69.0
Female 31.0
Place of birth
NDD/D subgroups
Motor 9.8
Speech/language 6.7
Learning/cognition 25.1
Social 18.5
Sensory 15.1
Psychological 45.7
Severity of overall disability by NDD/D subgroups
Motor
Mild to moderate 31.1
Severe to very severe 68.9
Speech/language
Mild to moderate 42.4
Severe to very severe 57.6
Learning/cognition
Mild to moderate 46.8
Severe to very severe 53.2
Social
Mild to moderate 17.8
Severe to very severe 82.3
Sensory
Mild to moderate 67.8
Severe to very severe 32.2
Psychological
Mild to moderate 46.3
Severe to very severe 53.7

NDD/D, neurodevelopmental disorders and disabilities; PALS, Participation and Activity Limitation Survey 2006.

##### Table 2.
Socioeconomic characteristics by the overall degree of disability of children with NDD/D in PALS
Total (weighted n=111,630)
Mild to moderate (n=51,180, %) Severe to very severe (n=60,450, %) Cramer’s V p-value
Residential location
Rural 80.3 82.1 0.023 <0.001
Urban 19.7 17.9
Census family total income (Canadian dollar)
<66,343 52.2 61.4 0.093 <0.001
≥66,343 47.8 38.6
Low after-tax income status
Non-low income 86.5 78.0 0.111 <0.001
Low income 13.5 22.0
Family assistance
Yes 10.0 45.2 0.386 <0.001
No 90.0 54.9
Condition of dwelling
Regular maintenance 50.7 50.9 0.038 <0.001
Major repairs 12.8 15.0
Minor repairs 36.5 34.1

NDD/D, neurodevelopmental disorders and disabilities; PALS, Participation and Activity Limitation Survey 2006.

##### Table 3.
Total (weighted n=111,630)
Mild to moderate (n=51,180, %) Severe to very severe (n=60,450, %) Cramer’s V p-value
Out-of-pocket expenses
Yes 21.3 30.1 0.163 <0.001
No 69.5 67.3
Not stated 9.2 2.6
Estimate of out-of-pocket expenses (Canadian dollar)
<200 24.4 13.4 0.136 <0.001
200-500 24.5 20.5
500-1,000 25.1 27.2
1,000-2,000 13.1 13.8
≥2,000 13.1 25.1
Needed but did not receive health service
Yes 7.0 26.7 0.261 <0.001
No 92.2 71.9
Needed a specialist medical doctor
Yes 0.6 2.7 0.258 <0.001
No 6.4 24.0
Needed a speech therapist
Yes 2.2 9.2 0.258 <0.001
No 4.8 17.6
Needed a psychologist or a psychotherapist
Yes 1.3 5.8 0.258 <0.001
No 5.6 20.9
##### Table 4.
Frequency of visits to a healthcare provider in the past 12 months
Total (weighted n=111,630)
Mild to moderate (n=51,180, %) Severe to very severe (n=60,450, %) Cramer’s V p-value
Speech therapist
At least once a week 8.1 17.8 0.204 <0.001
At least once a month 5.5 9.2
Less than once per month 7.2 12.5
Never 77.2 59.2
Not stated 2.1 1.3
Psychologist
At least once a week 2.6 4.5 0.177 <0.001
At least once a month 4.0 8.2
Less than once per month 16.4 26.8
Never 75.6 59.1
Not stated 1.3 1.3
Occupational therapist
At least once a week 1.2 6.8 0.273 <0.001
At least once a month 3.9 11.4
Less than once per month 6.9 16.8
Never 86.8 63.2
Not stated 1.1 1.9
Social worker
At least once a week 1.4 5.8 0.304 <0.001
At least once a month 5.6 12.0
Less than once per month 7.9 24.1
Never 81.9 57.3
Not stated 3.2 0.8
##### Table 5.
Associations between socioeconomic characteristics, frequency of visits to a healthcare provider and overall degree of disability of children with NDD/D in PALS: multivariate logistic regression model
Total (weighted n=111,630)
aOR (95% CI)
Age (yr)
5-7 1.00 (reference)
8-11 1.56 (1.36, 1.80)***
12-14 0.76 (0.66, 0.88)***
Residential location
Rural 1.00 (reference)
Urban 2.75 (2.07, 3.64)***
Condition of dwelling
Regular maintenance 1.00 (reference)
Major repairs 3.09 (2.05, 4.67)***
Minor repairs 1.77 (1.30, 2.40)***
Family assistance
Yes 1.00 (reference)
No 0.02 (0.01, 0.03)***
Sex
Male 1.00 (reference)
Female 2.07 (1.89, 2.36)***
In past 12 months, frequency of seeing a social worker
At least once a week 1.00 (reference)
At least once a month -
Less than once per month -
Never 0.43 (0.30, 0.62)***
Out-of-pocket expenses not reimbursed from health professional
Yes 1.00 (reference)
No 5.15 (3.75, 7.06)***
Not stated -
Low after-tax income status
Yes 0.22 (0.12, 0.38)***
No 1.00 (reference)
Not stated -
NDD/D subgroups
Speech/language (yes) -
Learning/cognition (yes) -
Social (yes) 329.06 (136.30, 794.40)***
Sensory (yes) 1.35 (1.04, 1.74)*
Psychological (yes) 0.31 (0.21, 0.47)***

NDD/D, neurodevelopmental disorders and disabilities; PALS, Participation and Activity Limitation Survey 2006; aOR, adjusted odds ratio; CI, confidence interval.

* p<0.05,

*** p<0.001.

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