Enfants Neuro Englais

DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE
Use of family disability service by families with young children

with disabilities
MATTHEW J RUSSELL 1,2,3 | YUNQI ZHANG 1 | XINJIE CUI 1 | SUZANNE TOUGH2,4, * |
JENNIFER D ZWICKER 3,5, *
1 PolicyWise for Children & Families, Edmonton; 2 Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary; 3 School of Public Policy,
University of Calgary, Calgary; 4 Paediatrics, Cumming School of Medicine, University of Calgary, Calgary; 5 Department of Kinesiology, University of Calgary, Calgary,
Canada.
Correspondence to Matthew Joseph Russell, School of Public Policy, 906 8th Avenue SW, 5th Floor, Calgary, Alberta T2P 1H9, Canada. E-mail: matthew.russell@ucalgary.ca
*Shared senior authorship.

This article is commented on by Gubbels on page 10 of this issue.
PUBLICATION DATA AIM To investigate which families with young children with disabilities used disability
Accepted for publication 29th December services and when they used services to inform policy on service delivery.
2019. METHOD We used linked administrative data from different ministries in Alberta to describe
Published online 31st January 2020 families’ use of disability services when their children were between the ages of 3 and 8
years old. Disability was investigated on the basis of the presence of a severe special
ABBREVIATIONS education code for children, and level of special education code. The outcome was the use of
FSCD Family Support for Children family disability services.
with Disability RESULTS Of 31 346 children, 24 761 (79.0%) had no special education code, 3982 (12.7%) had
SES Socioeconomic status a mild special education code, and 2603 (8.3%) had a severe special education code. Level of
special education code was associated with child characteristics and service use. Children
with severe special education codes generally were more likely to report service use and
have poor outcomes than those with less severe codes. Of note, 26% of children with severe
special education codes used family disability services. In addition, among children with
severe special education codes, many years of severe coding (compared with fewer years)
had the strongest association with family disability service use (prevalence ratio 5.50; 95%
confidence interval 4.10–7.37). Associations with family disability service use were seen with
mental health, health care, and educational achievement. Interactions between child
characteristics and service use were observed.
INTERPRETATION This study provides evidence that families were more likely to use disability
services when they were involved with other services, and that use interacts with various
factors. The findings highlight the importance of considering service eligibility, referral, and
integration.
access to supports for children with disabilities and their

families.1 This study investigated use of the provincial fam-
(Signatories) recognize the equal right of all persons
ily disability services in Alberta, which are services that can
with disabilities to live in the community, with
help facilitate the inclusion and participation of children
choices equal to others, and shall take effective and
with disabilities and support their families in line with fed-
appropriate measures to facilitate full enjoyment by
eral United Nations Convention on the Rights of Persons
persons with disabilities of this right and their full
with Disabilities commitments (articles 7, 23, 24, and
inclusion and participation in the community.
26).2,3
United Nations Convention on the
Fifteen per cent of children and young people (2–20y) in
Rights of Persons with Disabilities1
the Alberta school system required education disability
For children with disabilities, full inclusion and partici- support in 2017.4 Children with disabilities are also more
pation in the community is often not yet a reality. As a sig- likely to have greater healthcare needs (e.g. more physician
natory to the United Nations Convention on the Rights of visits and more hospitalizations),5 mental health issues,6
Persons with Disabilities and its Optional Protocol, and poor educational achievement7 than children without a
Canada has made a commitment to improve this situation, disability. Caregivers of children with a disability often
including collecting more data on and providing better experience challenges, higher financial burden to support
© 2020 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press DOI: 10.1111/dmcn.14478 81
This is an open access article under the terms of the Creative Commons Attribution License, which permits use,
distribution and reproduction in any medium, provided the original work is properly cited.
14698749, 2021, 1, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/dmcn.14478 by National Health And Medical Research Council, Wiley Online Library on [27/11/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
their child,8 lower quality of life9 and higher levels of What this paper adds
stress, feelings of isolation and frustration, and physical • Children with severe special education codes were more likely to use ser-
and mental health issues10–13 than families without children vices than those with less severe codes.
with disabilities. As disability services can help facilitate • They were also more likely to have poor outcomes than those with less sev-
the full inclusion and participation of children with disabil- ere codes.
ities and support their families,3 it is important to know
• Fewer families used disability services early (age 3y) compared with later
on.
more about how these services are being accessed. This • Families’ use of disability services corresponded with other service use.
study used administrative data to provide information on • The study elucidated potential barriers and facilitators to disability service
which families with children with disabilities used ‘family use.
disability services’ aimed at supporting the needs of chil-
(Children’s Services, Community and Social Services,
dren with disabilities and their families.
Health, Education, Advanced Education, and the Justice
The early years are considered important to the develop-
and Solicitor General). The mandate of the Child and
mental trajectories of children with disabilities.14–16
Youth Data Laboratory was to link and analyse administra-
Receiving early access to support can provide a foundation
tive data to provide evidence for policy and program devel-
to addressing barriers related to children with disabilities’
opment for the support of children and young people in
full participation in society and improve developmental tra-
Alberta. The Laboratory was linked using privacy-preserv-
jectories.14,17 Resources allocated to early services are
ing techniques and contained program and service use
thought to have a greater impact across the lifespan than
information for over 2 million children and young adults
later investments.16,18,19 This study investigated the use of
(0–30y) across Alberta from 2005/06 to 2010/11.3 Further-
family disability services in the early years of development
more, as this initiative partnered with the ministries, data
for children with disabilities.
derivations explained below reflect stakeholder engagement
The Anderson Healthcare Utilization model proposes
and feedback to maximize their relevance to actual
that three dynamic factors relate to families’ use of ser-
program use.
vices: predisposing factors (sociocultural factors), enabling
factors (logistical aspects of accessing care), and need.20
The social determinants of health, such as sex, socioeco- Study population
nomic status (SES), and geographical location are often For our target study population, we selected Albertan chil-
related to predisposing and enabling factors.21 For exam- dren who met three criteria: (1) they were 3 years old at
ple, SES can reduce funds available to families, limiting the beginning of the Albertan school year in 2005/06 (and
the options they have to pursue support services for their 8y in 2010/11); (2) they had at least 1 year of school regis-
child, and location can affect availability of services to fam- tration between 2005/06 to 2010/11; and (3) they were
ilies.21 In addition, both perceived need (i.e. if parents feel full-time registered in the Alberta Health Care Registry
their child has need) and evaluated need (i.e. if service pro- over the 6 years. This resulted in a sample of 31 346 chil-
viders state there is a need) can affect how families use ser- dren. Full-time health registration was necessary to ensure
vices.20 This study investigated how potential barriers and that children had residence in Alberta for the duration of
facilitators (child characteristics and service use patterns) the study.
related to families’ use of disability services.
We used administrative data to investigate which Alber- Outcome: family disability service use
tan families of children with disabilities, as identified by For our outcome, we investigated whether children’s fami-
special education service use, made use of provincial family lies used disability services through the Family Support for
disability services in children’s early years of development Children with Disability (FSCD) program. The FSCD
(3–8y). We investigated when families accessed disability program works in partnership with eligible families to pro-
services, which types of disability the children had when vide support that is based on their child’s and family’s
their families accessed services, and barriers and facilitators assessed needs.22 FSCD has a variety of services: informa-
to service access. tion or referral to supports, family-focused support (e.g.
cost reimbursement, counselling, or respite), or child-fo-
METHOD cused support (e.g. aids, rehabilitation, or temporary out-
This study was approved through the Health Research of-home placement). FSCD services are designed to
Ethics Board of Alberta (number 1214) and the Conjoint strengthen families’ ability to promote their child’s healthy
Faculties Research Ethics Board from the University of development and participation in society. Outcomes were
Calgary (REB 18-1633). based on families’ FSCD use over the 6-year period.
Data set Exposure: special education codes

We used administrative data from across the Child and To describe our population, children were defined by their
Youth Data Laboratory. The Laboratory was a joint initia- special education support use, as defined by special educa-
tive between PolicyWise for Children & Families and six tion coding in any of the study years: no code (not coded
participating ministries in the Government of Alberta as requiring educational support), mild code (coded for
82 Developmental Medicine & Child Neurology 2021, 63: 81–88

low or moderate levels of support), or severe code (coded statistics were used to describe the sample on the basis of
for high levels of support).23 As multiple codes were possi- child characteristics and services used for the full sample
ble each year and coding could change over time, we and by special education support use (no code, mild code,
determined special education support use by the most sev- or severe code), and are reported as frequencies and pro-
ere code found at least once over the 6 years. Our use of portions. We describe the children with mild and severe
the most severe code was based on Alberta Education data coding in relation to the general population.
practices. Next, descriptive analyses were used to report when chil-
As most mild or not coded children were not eligible for dren used FSCD services, which special education disabil-
the outcome (FSCD use), analyses focused on children ity categories made up severe codes, and how much
who were coded as severe, with exposure based on the children with different severe special education categories
number of years children had a severe special education used FSCD services (Fig. 1).
code.22 We compared children who had 1 to 3 years of Finally, multivariable regression modelling (using a
severe special education coding with children who had 4 to robust log-Poisson method) was used to estimate how the
6 years of severe coding. In addition, we split special edu- length of severe coding and other covariates related to any
cation codes by category of code (e.g. emotional/be- FSCD use over the 6 years (0=no use vs 1=any use), as a
havioural disability, multiple disability, etc.). Because codes prevalence ratio (Table S1, online supporting information
changed over time, it was possible for children to be classi- and Fig. 2).24 We used log-Poisson models for consistency,
fied in more than one category. See descriptions of the cat- because many log-binomial models failed to converge.
egories in Appendix S1 (online supporting information). While all child characteristic and service use covariates
were included in the multivariable model to control for the
Covariates influences of other variables, a stepwise backward approach
To determine the factors underlying a family’s use of was used to select two-way interactions between variables
FSCD services, we investigated how child characteristics that were significant (p<0.05). We report frequencies, pro-
(e.g. sex and city size) and service use (e.g. mental health portions, and unadjusted models to show how unadjusted
service use and educational achievement) related to FSCD variables and interactions related to FSCD use. Individuals
use. Covariates were chosen on the basis of their potential with data missing in any variable across all 6 years were
impact on support access, and to children with disability not included in models (14.5%; missing data were in gen-
and their families.3,5–7,20,21 Covariates are described in eral more likely to be rural [39.1% vs 20.3%] and low SES
detail in Appendix S1. [47.3% vs 38.5%]).
Covariates calculated over 2005/06 to 2010/11 RESULTS

Six covariates over 2005/06 to 2010/11 were calculated as Child characteristics and service use
follows: (1) Sex was based on the most commonly reported Of 31 346 children who were aged 3 years in 2005/06,
value for the child (female or male). (2) City size was based 24 761 (81.7%) had no code, 3982 (10.1%) had a mild
on the average population of the city where the child lived code, and 2603 (8.3%) had a severe code. As FSCD ser-
(rural<10 000; urban≥10 000). (3) SES was based on the vices were mostly limited (owing to eligibility) to children
average social and material indicators of the child’s neigh- with severe special education codes, the main focus of our
bourhood (low SES, bottom 40% of Albertan neighbour- analysis was the 2603 children coded as severe.
hoods; high SES, top 60%). (4) Use of English as a second The full sample (all children in the cohort) showed a
language was based on any program use for the child. (5) near-even split on sex, with most children living in urban
Mental health service use was based on any mental health- settings (78%). Twelve per cent had English as a second
related use found in health care records for the child. (6) language, 10% used mental health services, and 19% used
High-cost health care use was based on the child being in high-cost health care services at least once over the 6 years.
the top 5% of estimated costs for their age group and sex However, only 2.5% used FSCD services. Educational
in any year. achievement was below expectations for 11% of the full
sample (Table 1).
Covariate calculated in 2010/11 only Compared with the full sample, children with severe
Educational achievement was based on the child perform- special education codes were more likely to be male (70%)
ing below expectations (having a moderate or severe intel- and have low SES (50%; vs 39% in the full sample). Chil-
lectual disability, or severe multiple disability; dren with severe special education codes were more likely
unsatisfactory Provincial Achievement Test scores; or to use mental health services (32%), be high-cost health
being behind one grade on the basis of their age) or meet- care users (53%), and use FSCD (26%). They were also
ing expectations (a lack of any of the above criteria). more likely to be below expectations in educational
achievement (34%). The strength of these patterns (com-
Data analysis pared with the full sample) was attenuated for mild (com-
SAS Enterprise Guide 7.1 (SAS Institute Inc., Cary, NC, pared with severe) codes. Children with any special
USA) was used for all statistical analyses. Descriptive education codes were less likely to use English as a second
Use of Family Disability Service Matthew J Russell et al. 83

24
(a) 19.59% 19.17%
18.63% 18.13%
% using FSCD services

16.71%
18
13.33%
12
0
3y 4y 5y 6y 7y 8y
100
(b)
80
% of severe codes
60
40
20
7.15%
29.47% 59.28% 25.12%
0
Severe Severe delay Severe Severe multiple or
emotional/behavioural involving physical/medical cognitive disability
disability language disability
100
(c)
80
60
40
20
18.90% 18.54% 63.15% 60.75%
0
Severe Severe delay Severe Severe multiple or
emotional/behavioural involving physical/medical cognitive disability
disability language disability
Figure 1: Among children with a severe special education code (a) the percentage that used Family Support for Children with Disability (FSCD) services
at the listed ages and (b) the percentage that ever had the listed category of special education code. Among children’s category of special education
code (c) the percentage that used FSCD services. Ninety-five per cent confidence intervals are shown as error bars.
language than those with no code (13% not coded; 9% and multiple or cognitive disability (7%; see
mild; 10% severe; Table 1). Appendix S1 for category descriptions; Fig. 1). Further-
more, the use of FSCD services was 63% for children
The ‘when’ and ‘who’ of family disability service use with a severe physical/medical disability, 61% for severe
Among children who ever had a severe special education multiple or cognitive disability, 19% for severe
code, 13% used services at 3 years old, which gradually emotional/behavioural disability, and 19% for a severe
increased to 20% at 6 years and was 18% at 8 delay involving language (Fig. 1). Notably, the least
years (Fig. 1). Of the children with severe codes, most prevalent disabilities had the highest percentage of
had severe delays involving language (59%), followed by FSCD use, compared with the most prevalent
emotional/behavioural (29%), physical/medical (25%), disabilities.

80 80
(a) (b)
Male Female No mental health

% using FSCD services service use
60 60
Used mental health
services
40 40
20 20
7.92%
11.30% 14.89% 64.92% 64.68% 23.80% 64.86% 64.83%
0 0
≤3y ≥4y ≤3y ≥4y
Educational achievement Educational achievement
80 60
(c) (d)
No mental health

service use High SES
60 Low SES
Used mental 40
health services
40
20
20
12.91% 31.92% 35.33% 46.00% 19.09% 18.56% 48.11% 31.51%

0 0
Meeting expectations Below expectations Meeting expectations Below expectations
Educational achievement Educational achievement
Figure 2: Significant interactions for the use of Family Support for Children with Disability (FSCD) services for children who had a severe special edu-
cation code. The percentage of families using FSCD services for interactions between (a) years with a severe education code by sex, (b) years with a
severe education code by mental health service use, (c) educational achievement by mental health service use, and (d) educational achievement by
socioeconomic status (SES). Ninety-five per cent confidence intervals are shown as error bars.
Barriers and facilitators of family disability service use severe coding (≥4y) did not show the same sex difference
This analysis provided evidence that many factors related in FSCD use. Second, children who were both below
to the use of FSCD services (Table S1; multivariable expectations and had mental health visits were more likely
prevalence ratios are reported below; combined fit, quasi- to use FSCD services than those with either factor alone.
likelihood information criterion 3208). Families of children Third, while FSCD use for families with children who met
with severe codes who used mental health services (preva- expectations did not differ by SES, among families with
lence ratio 3.06, 95% confidence interval [CI] 2.34–4.00), children below expectations, 32% with low SES and 48%
were high-cost health care users (prevalence ratio 1.57, with high SES used FSCD (Fig. 2).
95% CI 1.37–1.80), or who had many years of severe cod-
ing (≥4y; prevalence ratio 5.50, 95% CI 4.10–7.37) were DISCUSSION
significantly more likely to use FSCD services than families As a signatory to the United Nations Convention on the
with children who did not use these services (adjusted). Rights of Persons with Disabilities, Canada has committed
Families with children below expectations in school were to removing barriers that prevent participation by children
also more likely to use FSCD than those meeting expecta- with disabilities and their families. In Canada, many of
tions (prevalence ratio 1.70, 95% CI 1.38–2.09). That edu- these commitments are met through provincial service pro-
cational achievement was related to FSCD use may relate vision. In this study, we examined the family disability ser-
to the complex needs that children with disabilities face, vices provided by the Government of Alberta for children
including needs that are not related to academic ability. with disabilities and their families. Using cross-ministry
Finally, we found significant interactions between factors administrative data, we identified that children with severe
(child characteristics and service use patterns). In particu- special education codes were more likely to be male, live
lar, while families with males with few years of severe spe- in low SES neighbourhoods, and require support (e.g.
cial education coding (1–3y) were less likely to use FSCD mental health services, high-cost health care services) than
than families with females, children with many years of the general population. This replicates demographic and

Table 1: Child characteristics and service use for the full sample
Special education support use
Child characteristics and service use Full sample, n=31 346 No code, n=24 761 Mild code, n=3982 Severe code, n=2603
Sex
Female 15 480 (49.38) 13 185 (53.25) 1523 (38.25) 772 (29.66)
Male 15 866 (50.62) 11 576 (46.75) 2459 (61.75) 1831 (70.34)
Missing 0 (0) 0 (0) 0 (0) 0 (0)
City size
Rural 6896 (22.00) 5398 (21.80) 978 (24.56) 520 (19.98)
Urban 24 450 (78.00) 19 363 (78.20) 3004 (75.44) 2083 (80.02)
Missing 0 (0) 0 (0) 0 (0) 0 (0)
SES
Low SES 12 007 (38.30) 9084 (36.69) 1638 (41.14) 1285 (49.37)
High SES 18 680 (59.60) 15 155 (61.21) 2259 (56.73) 1266 (48.63)
Missing 659 (2.1) 522 (2.1) 85 (2.13) 52 (2.0)
Student of English as a second language
Yes 3912 (12.48) 3274 (13.22) 365 (9.17) 273 (10.49)
No 27 434 (87.52) 21 487 (86.78) 3617 (90.83) 2330 (89.51)
Missing 0 (0) 0 (0) 0 (0) 0 (0)
Mental health services
Yes 3040 (9.70) 1714 (6.92) 494 (12.41) 832 (31.96)
No 28 306 (90.30) 23 047 (93.08) 3488 (87.59) 1771 (68.04)
Missing 0 (0) 0 (0) 0 (0) 0 (0)
High-cost health care
Yes 5859 (18.69) 3323 (13.42) 1156 (29.03) 1380 (53.02)
No 25 487 (81.31) 21 438 (86.58) 2826 (70.97) 1223 (46.98)
Missing 0 (0) 0 (0) 0 (0) 0 (0)
Educational achievement
Below expectations 3092 (10.65) 1826 (7.89) 499 (13.71) 767 (33.92)
Meeting expectations 25 953 (89.35) 21 317 (92.11) 3142 (86.29) 1494 (66.08)
Missing 2301 (7.34) 1618 (6.53) 341 (8.56) 342 (13.13)
Outcome: family support for children with disabilities use
Yes 787 (2.51) 65 (0.26) 54 (1.36) 668 (25.66)
No 30 559 (97.49) 24 696 (99.74) 3928 (98.64) 1935 (74.34)
Missing 0 (0) 0 (0) 0 (0) 0 (0)
Data are n (%) unless otherwise stated. Results are for all children in the cohort who were 3 years old in 2005/06 and by children’s special
education support use. Percentages are summed vertically across factors (e.g. the sum of male and female). SES, socioeconomic status.
health service use patterns highlighted in previous compared with older ages. Similar patterns have been
research.25 In addition, we found evidence that severity of noted for early intensive autism interventions in Ontario,
special education support use related to these patterns. with 75% of children beginning interventions at 6 years
Next, we found that family disability service use was old.19 This is problematic, as some interventions are
often limited to children with severe special education thought to be most effective early in life.18,19 This study’s
codes, compared with those having mild coding or who finding of less use of FSCD services among children of
were not coded. This can be interpreted in the context of preschool age is concerning as the FSCD program facili-
eligibility, as both severe special education codes and fam- tates access to specialists who can provide interventions.22
ily disability services require formal diagnoses.22,23 As both We also found that disability services were more frequently
services require diagnoses, facilitating early identification used by families with children with certain disabilities (e.g.
and diagnosis is important to children’s support access. In autism, fetal alcohol spectrum disorder, intellectual disabil-
addition, it is somewhat concerning that 26% of all fami- ity, etc.). This may be based on need; however, some ser-
lies with children with severe codes (whom we anticipate vices might also benefit families with children with other
would be more likely to be eligible) used family disability disabilities. For example, therapy is thought to benefit chil-
services over the period when their child was 3 to 8 years dren with emotional and behavioural issues and their care-
old. While we should expect that family disability services giving families.26,27
would not be used by all, as access is voluntary,22 some of Several facilitators or barriers to the use of family dis-
the remaining families may have unmet needs that would ability services were identified. The number of years of
be alleviated through support. However, future research is severe special education coding was a key factor in FSCD
necessary to understand the extent to which families have service use; families with children who had more years of
unmet needs, what barriers they have to accessing services, coding were more likely to use FSCD services than those
and what might improve their navigation of these services. with fewer years of coding. The Anderson Healthcare
In addition, we described when family disability services Utilization model suggests that need may be related to this
were accessed and which children used these services. Ser- increased use of FSCD services (e.g. they may perceive
vices were less likely to be accessed at 3 years of age more need or be more likely to have a referral over more

years).20 Similarly, other service needs (e.g. mental health together to address needs, could increase access to services
service use, etc.) and poor educational achievement were when they are needed. In Alberta, integration of services is
connected to FSCD service use. This is again in line with a current discussion in movements such as the Regional
theory that suggests service use is facilitated by need.20 Collaborative Service Delivery Program, where Alberta
Finally, we found interactions between service use and Education is working to increase conversations between
child characteristics on the use of family disability services. In provincial disability service providers,34 and the Integrated
particular, families with males (vs females) were less likely to Hubs project, where municipal groups across Alberta are
use FSCD services unless they had many years of severe cod- seeking to design one-stop places to support children and
ing. Next, when children with severe education codes were young people with mental health issues.35 Furthermore,
meeting expectations, service use did not differ by income. the data project that this paper draws upon had this very
However, for families with a child below expectations, fami- goal: to bring Alberta ministries together to provide coor-
lies in neighbourhoods of high SES were more likely to use dinated support for children and young people.36
services compared with those in low SES neighbourhoods.
These findings replicate previous findings that social determi- Limitations
nants of health affect family disability service use.20,21 Such Despite the strength of using population-based administra-
patterns are important considerations to service providers as tive data, this study had several limitations. First, administra-
they seek to facilitate equal access. Given that higher rates of tive data suffer from limitations, including errors due to
disability are seen in lower-income populations,28 further formatting and data entry issues, and difficultly in interpret-
research is needed to understand how to facilitate the use of ing data patterns. In particular, not using family disability
disability services in disadvantaged populations. services may relate both to less need or to less access to ser-
vices. As such, this research would benefit from future inves-
Implications tigations (i.e. surveys and/or qualitative data) to provide
This research poses implications to the service delivery of more detail on families’ use of disability services. This
children with disabilities. research would help better understand the specific pathways
of service use and the barriers families face. Second, while
Eligibility FSCD is one disability support service, other potential sup-
As family disability services and other disability services (i.e. ports not represented in this study may be used by families
intensive autism interventions, special education, etc.) require (e.g. by health care providers, private providers, etc.). As
a diagnosis before services are offered, early identification is such, our data understate the percentage of children getting
key to accessing these services. As one possible solution to any support beyond FSCD. For example, the lower percent-
this issue, screening tools may increase early identification;29 ages of family disability service uptake for children with
however, thoughts are mixed on screening tools and how to emotional/behavioural issues may be partly explained by a
best use them.30,31 In addition, relaxing the requirements for lack of data on clinical psychologist and counselling service
diagnosis and providing services when a demonstrable need use. Future linkage between these programs would provide a
is seen (i.e. the requirement for special education support) more holistic picture of disability service access. Third, as
would increase access to services. This adds to the growing missing data tended to be for lower SES and rural (vs urban)
discussion for a need to shift from a ‘medical model of dis- children, these findings may have limitations and generaliz-
ability’ to models that focus on removing barriers to appro- ability issues for these populations. Furthermore, most of the
priate supports to optimize outcomes. missing data were seen for educational achievement in the
model. As children with more severe disabilities may be less
Referral likely to take the Provincial Achievement Test and participa-
As the data show that families are more likely to use dis- tion is not required, this may mean that the prevalence ratios
ability services when other service needs are involved, this for family disability service use are underreported (as this
speaks to the potential for referral to increase disability may exclude more severe cases). Finally, we cannot make
service access. However, to make the referral process causal interpretations based on these data. Future research is
stronger, it would be beneficial to have processes that needed to determine what factors lead to disability service
enable easy identification of other potential services.32 use.
Things such as education programs for practitioners and
technology-based resources that show potential services CONCLUSION
could help increase referral. In Alberta, the phone number This study provides evidence of when and which families
2–1–1 is one such resource that seeks to fill this role for use disability services in the early years. The findings point
referral to services, although this service is more focused to the potential benefit of discussions on access to services,
on crisis diversion.33 including those on service eligibility, referral to services,
and integration of services. Together the study can inform
Integrated service delivery decisions on how to improve access to disability services
Owing to the complex needs of children with disabilities, among families with children with disabilities in the early
integrated service delivery, where programs coordinate years, to facilitate their full inclusion and participation.1

A CK N O W L E D G E M E N T S views of the Government of Alberta. The Government of Alberta
We thank the Kids Brain Health Network (KBHN), a Canadian does not express any opinion in relation to this study. The
Network of Centre of Excellence, and the Canadian Institutes of authors have stated that they had no interests that might be per-
Health Research (CIHR) for supporting this work through the ceived as posing a conflict or bias.
Health System Impact Fellowship program. Whereas CIHR and
KBHN provided trainee funding, the design of the study and col- SUPPORTING INFORMATION
lection, analysis, and interpretation of data and writing of the The following additional material may be found online:
manuscript were independent efforts by the authors. We acknowl- Appendix S1: Categories of Special Education codes in the
edge Ben Gibbard for his clinical perspective on the findings. manuscript.
This study is based in part on data provided by the Government Table S1: Prevalence ratio for the association between child
of Alberta. The interpretation and conclusions contained herein characteristics and service use, and the use of FSCD services for
are those of the researchers and do not necessarily represent the families with children with severe special education codes
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DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE
RESUMEN
~ os pequen
Uso de servicios para familias con discapacidad por familias con nin ~ os con discapacidad
OBJETIVO
Investigar que familias de nin~ os con discapacidad utilizaban servicios para individuos con discapacitad y cua
ndo usan estos servi-
n de servicios.
cios - a fin de informar sobre polıticas sobre prestacio
M
ETODO
Utilizamos datos administrativos relacionados de diferentes ministerios en Alberta para describir el uso de servicios de discapaci-
dad por familias con hijos entre las edades de 3 y 8 an ~ os. La discapacidad se identifico basa
ndose en la presencia de un co digo
de educacio n especial severo para nin
~ os, y el nivel de co
digo de educacio n especial. El resultado fue la utilizacio
n de servicios
para familias de personas con discapacidad.
RESULTADOS
De 31.346 nin ~ os, 24.761 (79.0%) no tenıan un co digo de educacio n especial, 3.982 (12.7%) tenıan un co digo de educacio n especial
leve, y 2.603 (8.3%) tenıa un co digo de educacio n especial severo. El nivel de co digo de educacio n especial fue asociado con las
caracterısticas del nin~ o y con la utilizacio n de servicio. Los nin ~ os con co
digos de educacio n especial severo reportaron mayor fre-
cuencia en el uso de servicios y mayor frecuencia de resultados pobres comparado con aquellos nin ~ os con co digos menos seve-
ros. Es de notar que 26% de nin ~ os con co digos de educacio n especial severos utilizaban servicios para familias de nin ~ os con
discapacidad. Adema s, entre los nin~ os con co digos de educacio n especial severos, muchos an ~ os de co digos severos (comparado
con menos an ~ os) tuvieron la asociacio n ma s fuerte con el uso de servicios para familias de nin ~ os con discapacidad (relacio n de
prevalencia 5.5; 95% intervalo de confidencia 4.10-7.37). Las asociaciones con el uso de servicios para familias de nin ~ os con disca-
pacidad fueron observadas con problemas de salud mental, cuidados de la salud y logros educativos. Se observaron interacciones
entre las caracterısticas del nin ~ o y la utilizacio n de servicio.

INTERPRETACION
Este estudio provee evidencia que las familias tenıan ma s probabilidades de usar servicios para discapacidad cuando estas esta-
ban involucradas con otros servicios, y que esa utilizacio n interactu
a con varios factores. Los hallazgos resaltan la importancia de
n e integracio
considerar los criterios para el acceso a servicios, y a su vez; la derivacio n de servicios.
RESUMO
^ ncia por parte de famılias de criancßas pequenas que possuem deficie
Uso de servicßos familiares para deficie ^ ncia
OBJETIVO
^ncia usaram servicßos para deficie
Investigar quais famılias com criancßas pequenas que possuem deficie ^ ncias e quando estes foram
~o de servicßos.
utilizados para informar polıticas de prestacßa
M
ETODO
Usamos dados administrativos ligados de diferentes ministe rios em Alberta para descrever o uso por parte das famılias dos
servicßos voltados para pessoas com deficie ^ ncia quando suas criancßas tinham entre 3 e 8 anos de idade. A deficie ^ncia foi investi-
gada com base na presencßa de um co ~o especial severo para criancßas, e o nıvel do co
digo de educacßa ~ o especial.
digo de educacßa
^ ncia.
O desfecho foi o uso dos servicßos familiares para deficie
RESULTADOS
De 31.346 criancßas, 24.761 (79,0%) na ~ o tinham nenhum co digo de educacßa~o especial, 3.982 (12,7%) tinham um co digo leve de
educacßa~o especial, e 2.603 (8,3%) tinham um co digo severo de educacßa~o especial. O nıvel do co digo de educacßa ~o especial foi
associado com as caracterısticas da criancßa e uso dos servicßos. Criancßas com co digos severos geralmente tinham maior probabili-
dade de reportar uso de servicßos e terem piores desfechos do que aquelas com co digos menos severos. Notadamente, 26% das
criancßas com co digos severos de educacßa ~o especial usaram servicßos familiares para deficie ^ncia. Ale m disso, entre criancßas com
digos severos de educacßa
co ~o especial, muitos anos de co digo severo (em comparacßa ~o com poucos anos) tiveram a maior asso-
~o com o uso de servicßos (taxa de prevale
ciacßa ^ncia 5,50; intervalo de confiancßa a 95% 4,10–7,37). Associacßo ~ es do uso de servicßos
^ ncia foram vistas com sau
familiares para deficie ~ o em sau
de mental, atencßa de, e sucesso educacional. Interacßo ~ es entre caracterısti-
cas da criancßa e do servicßo foram observadas.
INTERPRETAC ~
ß AO
Este estudo fornece evide ^ncia de que as famılias tiveram maior probabilidade de usar servicßos para deficie
^ncia quando elas esta-
vam envolvidas em outros servicßos, e de que o uso interage com va rios fatores. Os achados destacam a importa ^ncia de conside-
~ o.
rar a elegibilidade dos servicßos, encaminhamento e integracßa

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DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY ORIGINAL ARTICLE

Use of family disability service by families with young children

*Shared senior authorship.

access to supports for children with disabilities and their

Data set Exposure: special education codes

82 Developmental Medicine & Child Neurology 2021, 63: 81–88

Covariates calculated over 2005/06 to 2010/11 RESULTS

Use of Family Disability Service Matthew J Russell et al. 83

% using FSCD services

84 Developmental Medicine & Child Neurology 2021, 63: 81–88

% using FSCD services

% using FSCD services

12.91% 31.92% 35.33% 46.00% 19.09% 18.56% 48.11% 31.51%

Use of Family Disability Service Matthew J Russell et al. 85

Special education support use

86 Developmental Medicine & Child Neurology 2021, 63: 81–88

Use of Family Disability Service Matthew J Russell et al. 87

88 Developmental Medicine & Child Neurology 2021, 63: 81–88

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