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Journal of Intellectual Disability Research doi: 10.1111/jir.12423

1055
VOLUME 61 PART 11 pp 10551068 NOVEMBER 2017

The determinants of service complexity in children with

intellectual disabilities
S. L. Stewart,1 K. Falah Hassani,1 J. Poss,2 & J. Hirdes2
1 Faculty of Education, Western University, London, Ontario, Canada
2 School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada

Abstract aged 1114 years and children with autism spectrum

disorder used over twofold higher levels of service
Background To date, little is known about the
complexity than children aged equal to or less than
predictors of healthcare service utilisation in children
10 years or children with other causes of ID. More-
with intellectual disability (ID). The aim of this study
over, victims of bullying, high scores on the family
was to identify the factors associated with service
functioning scale or learning or communication dis-
complexity in children with ID in Ontario, Canada.
order were associated with greater service complexity.
Methods The population of this cross-sectional study
Conclusions The ndings of this study indicate that a
consisted of 330 children with ID ages 4 to 18 years
variety of factors are related to service complexity
who accessed mental health services from November
ranged from childrens nonclinical (age and
of 2012 to June of 2016 in four agencies. All partici-
experiences of bullying) to clinical (e.g. aggression,
pants completed the interRAI Child and Youth
learning/communication problems and autism spec-
Mental Health and Developmental Disability Assess-
trum disorder) characteristics.
ment Instrument, which is a semi-structured
clinician-rated assessment that covers a range of Keywords autism spectrum disorder, bullying,
common issues in children with ID. The outcome of intellectual disability, interRAI, learning disorder,
this study was a service complexity variable based on mental health services
(1) mental health service utilisation including any
services provided to the child and (2) the manage-
ment involved in providing that care. Eight individual
items were summed, resulting in a scale that ranged Introduction
from 0 to 8. Scores were then dichotomised into two
groups: a score of 02 identied children with a low Intellectual disability (ID) is dened as a disability
service complexity and a score of 3 or higher identi- characterised by signicant limitations in intellectual
ed children with a high service complexity. functioning and adaptive behaviour (Schalock et al.,
Results After adjustment for other covariates, gender 2010). ID affects about 1.8% of children and youth
was not associated with service complexity. Children (hereafter children refer to both children and youth)
and is more prevalent in men than in women (Maulik
Correspondence: Kobra Falah-Hassani, PhD, Faculty of Education,
et al., 2011). Moreover, it is more common in low-
Western University, 1137 Western Road, London, Ontario, Canada, income and middle-income countries than in high-
N6G 1G7 (e-mail: kfalahha@uwo.ca). income countries (Maulik et al., 2011).

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 Journal of Intellectual Disability Research
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S. L. Stewart et al. Determinants of service complexity
Intellectual disability is a health condition that
often requires special healthcare needs (McPherson
et al., 1998). For example, children with ID are
threefold to fourfold more likely to have problem
behaviours than children from the general population
(Dekker et al., 2002). They are more likely to
experience somatic complaints, social problems,
attention problems, thought problems, delinquent
behaviour, aggressive behaviours or internalising or
externalising problem (Dekker et al., 2002) and are
also more likely to be at higher risk of a mental health
disorder than children without ID; 30 to 50% of
children with ID have a mental health disorder
compared with 8 to 18% of those without (Einfeld
et al., 2011). Approximately, 17% of children with ID
exhibit self-injury (Oliver & Richards, 2015) and are
at increased risk for suicidal thoughts, suicidal
behaviours and death by suicide (Ludi et al., 2012),
compared with individuals without ID. Furthermore,
the prevalence rate for sexual and physical violence
toward children with disabilities is 14% and 20%
respectively which is 3.7 times more common than
violence against children without disabilities (Jones
et al., 2012). These vulnerable children are also 2 to 3
times more likely to be bullied than children without
disabilities (Banks et al., 2009; Twyman et al., 2010).
Recently, research has indicated that children with
ID use more healthcare services than the general
population, particularly rehabilitative and psychiatric
services (Schieve et al., 2012; Chiang et al., 2013). For
example, children with ID have 1.5 times more doctor
visits and 3.5 times more hospital days than children
without ID (Boyle et al., 1994). According to previous
research, the use of mental health services does not
differ between boys and girls (Verhulst & van der
Ende, 1997); however, younger children with ID are
less likely to receive mental health services (Witt et al.,
2003) than older children.
Children with ID who experienced a negative life
event utilise mental health services more frequently or
seek other professional help than children with ID
who have not experienced negative life events
(Douma et al., 2006). Research has indicated that
children in out-of-home placements experience
physical and sexual abuse and are at higher risk for
suicide than children living in their home (Harpin
et al., 2013). Children placed in foster care or group
care have a threefold to vefold increase in the use of
mental health services than children remaining in
2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
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their homes (Hurlburt et al., 2004). Higher mental
health service use by children in foster or group care
may be due to the fact that these children engage in
more aggressive, self-injurious behaviour or deliberate
self-harm; have a history of physical abuse or
witnessed domestic violence in the household and are
consequently more likely to be placed out-of-home
(den Dunnen et al., 2013; Stewart et al., 2014;
Armiento et al., 2016; Baiden et al., 2017a; Baiden
et al., 2017b).
While there is a paucity of research in the area of
service utilisation for children with disabilities,
parental perception of signicant problems in the
child is associated with increased use of mental health
services (Verhulst & van der Ende, 1997). Caregivers
of children with developmental disabilities experience
higher levels of distress (Herring et al., 2006) than
caregivers of children without disabilities.
Furthermore, emotional and behaviour problems of
children with ID, as well as caregiving demands, are
associated with poorer perceived family functioning
(Raina et al., 2005; Herring et al., 2006). However,
the role of caregiver distress in mental health service
utilisation in children with ID is not known. For
example, there is a paucity of research examining
whether caregiver distress and poorly perceived family
functioning are independent predictors of mental
health service use. To date, little is known about
independent causes of increased healthcare service
utilisation in children with ID. Such knowledge is
needed to target modiable risk factors related to
healthcare utilisation and service complexity. We
therefore aimed to identify the determinants of service
complexity in a group of children with ID receiving
services in the province of Ontario, Canada.
Method
This cross-sectional study used items from the
existing dataset of the interRAI Child and Youth
Mental Health and Developmental Disability
(ChYMH-DD; Stewart et al., 2015a) and aimed to
investigate correlations between mental health service
complexity in a convenience sample of clinically
referred children with ID. Children with ID were
assessed in mental health settings by clinicians to
support comprehensive care planning, outcome
measurement, and to estimate relative resource
intensity.
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S. L. Stewart et al. Determinants of service complexity
Participants
The study sample consisted of 330 English-speaking
children between the ages of 418 years old who
accessed mental health services from November of
2012 to June of 2016. The children were referred to
mental healthcare agencies by family doctors,
paediatricians, parents or other allied healthcare
professionals. Assessors at these agencies completed
the interRAI ChYMH-DD as part of normal clinical
practice across four sites providing mental health
services to children and youth with ID in the province
of Ontario, Canada. The assessment took approxi-
mately 6090 minutes to complete. Children without
a diagnosis of ID (IQ above 70) were excluded from
this study. The study was approved by the University
of Western Ontario ethics board (REB #106415), and
written informed consent was given by guardians of
children in the present study as part of consent to
treatment at the service agencies.
Measures
A detailed description of the interRAI Child and
Youth instruments has been provided in previous
publications (Armiento et al., 2016; Stewart, Currie
et al., 2015; Stewart et al., 2015a, 2015b; Stewart &
Hirdes, 2015; Stewart et al., 2016; Stewart et al., in
press) and is also available from interRAIs website at
http://www.interrai.org/child-and-youth-mental-
health.html In brief, the interRAI ChYMH-DD
(Stewart et al., 2015a) is based on a semi-structured
clinician-rated interview that covers a range of
common issues in children with global developmental
delays or ID (children 418 years). It includes over
400 items and builds a comprehensive picture of the
childs strengths, needs, functioning and areas of risk
to inform care planning for clients with mental health
needs. The clinician creates a clinical prole of
children based on a collection of reports, observations
and judgments made from interactions with the
family, the children themselves and service providers
with appropriate consent (Stewart et al., 2015a;
Stewart et al., 2015b).
The ChYMH-DD assesses a variety of domains
including mental state indicators, substance use or
excessive behaviour, strengths and resilience,
cognition and executive functioning, independence of
daily living, health conditions, family and social
relations, stress and trauma, medication, prevention,
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mental health service utilisation, treatments,
nutritional status, education, environmental
assessment and diagnostic and other health-related
information. Numerous studies have found items and
scales embedded in the interRAI Child and Youth
instruments to have strong psychometric properties
(Lau et al., 2017; Stewart, Currie et al. 2015, Phillips
& Hawes, 2015, Stewart & Hamza, 2017).
Outcome
To develop the service complexity scale, the literature
was reviewed to identify a list of candidate items.
Second, an expert panel was conducted with the
original research team to identify key factors
associated with service utilisation and complexity in
the interRAI ChYMH-DD (Appendix A). The
service complexity scale was constructed by using
three different types of services: (1) formal care
provided to the patient: psychiatrist, social worker,
psychologist, psychometrist, child protection and case
management; (2) the number of lifetime admissions
to mental health facilities and (3) the interventions
provided to the child in the last 30 days: life skills
training, social skills, family functioning, anger
management, behaviour management, crisis
intervention, family preservation, family support and
medication management. Eight individual items were
scored from 0 to 1 based on the responses described
above. The items were summed, with a resulting
service complexity scale that ranged from 0 to 8.
Scores were then dichotomised into two groups
whereby a score of 02 identied children with a
low service complexity score and those with a score
of 3 or higher were identied with high service
complexity score.
Data collection
Information was collected on marital status of parents
and classied into four groups: (1) married; (2)
partner; (3) widowed, separated or divorced and (4)
unknown. Severity of ID was grouped into four levels
borderline or mild, moderate, severe or profound
and a level that indicated there was an existing ID but
the severity of the ID could not be obtained (e.g.
untestable).
Data on provisional or actual clinical diagnoses
including autism spectrum disorder, learning or
communication disorder, attention decit
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S. L. Stewart et al. Determinants of service complexity
hyperactivity disorder (ADHD), reactive attachment
disorder, eating disorder, substance-related disorders,
schizophrenia and other psychotic disorders and sleep
disorders were collected. Data regarding recent life
events included victim of bullying, witness of
domestic violence and victim of sexual or physical
assault or abuse. Children who witnessed domestic
violence was dened as being aware of, had
knowledge of or had witnessed physical or verbal
actions or threats between family members. Victim of
sexual or physical assault or abuse was dened as any
form of sexual or physical abuse/assault experienced
by the child, regardless of his or her age when the
incident(s) occurred. Lastly, information regarding
concern that child/youth is at risk for self-injury (non-
suicidal harm to self) was gathered from family,
caregiver, friend or staff.
Data were collected by using several additional
scales. The Risk of Harm to Others Scale uses a
decision tree algorithm that depicts risk based on
responses to items such as violent ideation,
intimidation of others or threatened violence,
violence to others and preoccupation with violence.
This scale has six scores which were classied into
four groups: none (score 0), low (score 12), example, the OR for gender dipicts the odds of service
moderate (score 34) and high (score 56). Higher complexity for women to the odds of service
scores indicate increased risk of harm to others
(Neufeld et al., 2012).
The Severity of Self Harm Scale provides a risk
algorithm that includes items such as performing a
self-injurious act, intent of self-injurious attempt was
to kill self, expressed concern that the child was at risk
for self-injury and depressive symptoms. The Severity
of Self Harm Scale ranged from 0 to 6 and grouped
into none (score 0), low (score 12) or moderate characteristics that were associated with service
or high (score 36). Higher scores indicate increased
risk of harm to self (Hirdes et al., 2010).
The Caregiver Distress Scale was used to monitor
change in a family caregivers stress level. The scale
determines major life stressors for the parent in last
90 days and includes items such as parent is unable or
unwilling to continue in caring activities; parent
expresses feelings of distress, anger or depression and
parent/primary caregiver has current developmental,
mental health or substance use issues. Standard use of
the scale classies scores into three groups: none
(score 0), low (score 13) and high (score 45). and 76% were men. Thirty-two per cent of the sample
For the nal multivariable analysis in the current
study, the Caregiver Distress Scale was dichotomised
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into two groups: absent (score 0) and present
(score 15) (Stewart & Hamza, 2017).
The Family Functioning Scale (Sun, 2016) measures
the level of functioning in the family and include
items such as family is persistently hostile or critical
of child, family members report feeling
overwhelmed by childs condition or parent/primary
caregiver has current developmental, mental health
or substance use issues. Responses were summed,
resulting in a scale ranging from 0 to 6. The scores
for this scale were then classied into three groups:
none (score 0), low (score 13) and high (score
46). High scores indicate weaker family
functioning.
Statistical analysis
A logistic regression model was conducted to identify
the factors associated with service complexity. A
logistic regression model allows studying the
relationship of a dichotomised outcome with a group
of characteristics. For each characteristic, a logistic
regression model gives a regression coefcient and an
odds ratio (OR). In this study, we reported ORs. For
complexity for men. First, an age-adjusted and
gender-adjusted logistic regression model was
conducted for each characteristic. Second, all
characteristics that were signicantly (P 0.05)
associated with service complexity in the age-adjusted
and sex-adjusted models were placed in the full
model. Lastly, a nal multivariable model was
completed keeping age, gender and other
complexity with P 0.20 in the full model. The
overall goodness of t of the multivariable model was
assessed by using the HosmerLemeshow test. The
area under the receiver operating characteristic curve
following the nal multivariable model was then
estimated.
Results
Sample characteristics
The mean age of the study population was 11.6 years,
lived in a family with three or more children in the
household and 25% of the parents were widowed,
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S. L. Stewart et al. Determinants of service complexity
separated or divorced. For the sample, 36.7% of
children had autism spectrum disorder, and 12.3%
were raised with frequent disruptions in care. For a
large portion of the sample (45%), the level of ID was
unspecied.
Service complexity score
Age-adjusted and gender-adjusted models
Table 1 provides information on the age-adjusted and
gender-adjusted OR of healthcare utilisation by
background characteristics. A number of
characteristics examined at the age-adjusted and
gender-adjusted models were found to be signicantly
associated with service complexity. Mental health
service complexity was 2.90 times higher in children
aged 1114 years and 2.18 times in those aged
15 years compared with children 10 years or younger
after adjustment for gender. Gender was not
associated with mental health service complexity after
adjusting for age. Service complexity was higher in
children with widowed, separated or divorced parents
(OR = 2.19, CI 1.213.95) and common law partners
(OR = 1.99, CI 1.023.88) compared with married
parents. There was also a signicant positive
relationship between childrens legal guardianship
and service complexity; specically, children who
were involved with Child Protective Services had a
higher level of service complexity compared with
children without such involvement.
Service complexity was higher in children with
autism spectrum disorder and those who were raised
with frequent disruptions in care (OR = 3.78, CI
1.887.60); however, service complexity was not
related to the number of children in household,
history of foster family placement and severity of ID
(Table 1). The use of mental health services increased
positively with increasing scores on the Caregiver
Distress Scale and Family Functioning Scale.
Moreover, risk of harm to others, concerns about
child self-injury, aggressive/disruptive behaviour,
victimisation due to bullying and domestic violence
were signicantly associated with service complexity
score (Table 1). With respect to diagnoses, ADHD,
learning or communication disorder and autism
spectrum disorder were all associated with service
complexity. Financial difculties, victim of sexual
assault or abuse, victim of physical assault or abuse,
self-injurious behaviour, reactive attachment
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disorder, eating disorder, substance-related disorders,
schizophrenia and other psychotic disorders and sleep
disorders were not signicantly associated with
complex mental health service utilisation.
Full multivariable model
After including all signicant variables in the full
model, six variables were signicantly associated with
service complexity (Table 2). Children aged
1114 years utilised twofold (OR = 2.30, 95% CI
1.124.74) the level of service complexity than
younger children aged 10 years. Children who had
autism spectrum disorder used threefold
(OR = 2.79, 95% CI 1.495.20) higher levels of
service complexity than children with other causes of
ID. Moreover, victim of bullying (OR = 2.66, 95%
CI 1.335.32) was associated with increased service
complexity. Service complexity increased with higher
scores on the Family Functioning Scale. The adjusted
OR was 3.33 (95% CI 1.159.60) for moderate and
8.33 (95% CI 2.0933.23) for high levels of family
dysfunction. Gender and marital status were not
associated with service complexity while caregiver
distress was approaching signicance (OR = 2.03, CI
0,974.25).
The HosmerLemeshow goodness-of-t test
indicated that the model ts the data (P = 0.37).
Together, all the characteristics in the nal model
explained 23.4% of the variance in mental health
service utilisation. The area under the receiver
operating characteristic curve was 0.815, indicating
that 81.5% of the children were correctly classied as
having service complexity based on the eight
characteristics.
Discussion
This study showed that mental health service
utilisation was higher in children age 1114 years,
children with autism spectrum disorder, children
with learning or communication disorder, children
living in families with high levels of family
dysfunction, and children who were victims of
bullying. Our ndings are in line with the previous
studies that indicated a variety of family factors,
including family structure, inuence service
utilisation (Brannan et al., 2003; Zimmerman, 2005;
Gaskin et al., 2008). Specically, compared with
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S. L. Stewart et al. Determinants of service complexity

Table 1 Age-adjusted and gender-adjusted odds ratio (OR) of service complexity by background characteristics. Service complexity is dened
as having a score of 3 or higher on the service complexity measure

Number of % of service
Characteristic Sample service complexity complexity OR 95% CI

Socio-demographic factors
Age
10 124 21 16.9 1
1114 118 44 37.3 2.90 1.595.29
15 84 26 31.0 2.18 1.134.23
Age as a continuous variable 326 91 1.11 1.031.19
(1-year increase in age)
Gender
Male 247 67 27.1 1
Female 79 24 30.4 1.10 0.621.94
Marital status
Married 168 33 19.6 1
Partner 58 20 34.5 1.99 1.023.88
Widowed, separated or divorced 85 31 36.5 2.19 1.213.95
Unknown 15 7 46.7 3.33 1.1010.09
Legal guardianship
Both parents 204 42 20.6 1
Mother only 71 27 38.0 2.24 1.234.05
Father only 11 4 36.4 1.96 0.547.10
Relative (s) or non-relative (s) 14 3 21.4 0.97 0.263.68
Child protection agency 26 15 57.7 4.43 1.8610.56
History of foster family placement
None 265 66 24.9 1
One foster family 36 14 38.9 1.76 0.843.67
Multiple foster families 25 11 44.0 1.87 0.784.43
Child raised with frequent disruptions in care
No 286 68 23.8 1
Yes 40 23 57.5 3.78 1.887.60
Current number of children in household
1 95 29 30.5 1
2 118 27 22.9 0.74 0.401.37
3 100 26 26.0 0.90 0.481.71
Financial difculties
No 309 87 28.2 1
Yes 17 4 23.5 0.79 0.252.54
Severity of intellectual disability
Borderline or mild 80 26 32.5 1

Moderate 67 19 28.4 0.77 0.371.58

Severe or profound 62 16 25.8 0.72 0.341.54
Not documented 117 30 25.6 0.90 0.471.73
Violence factors
Severity of self-harm scale
0 (None) 169 41 24.3
12 (Low) 13 4 30.8 1.21 0.354.21
36 (Moderate or High) 32 15 46.9 2.46 1.125.41
Not documented 112 31 27.7 1.19 0.692.07
Self-injurious behaviour
No 143 34 23.8 1
Present but not exhibited in last 3 days 53 15 28.3 1.31 0.642.70
(Continues)

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S. L. Stewart et al. Determinants of service complexity

Table 1. (Continued)

Number of % of service
Characteristic Sample service complexity complexity OR 95% CI

Exhibited on 12 of last 3 days 27 7 25.9 1.22 0.473.19

Exhibited daily in last 3 days, 12 episodes 25 9 36.0 1.78 0.714.44
Exhibited daily in last 3 days, 3 or more 78 26 33.3 1.67 0.903.11
episodes or continuously
Caregiver Distress Scale
0 (None) 127 17 13.4 1
12 (Low) 153 56 36.6 3.35 1.806.21
35 (High) 45 18 40.0 4.06 1.838.97
Family, caregiver, friend or staff expressed
concern that child/youth was at risk for self-injury
No 252 60 23.8 1
Yes 74 31 41.9 2.19 1.253.82
Victim of bullying
No 254 58 22.8 1
Yes 72 33 45.8 2.55 1.464.46
Witness of domestic violence
No 275 66 24.0 1
Yes 51 25 49.0 2.79 1.495.20
Victim of sexual assault or abuse
No 311 83 26.7 1
Yes 15 8 53.3 2.78 0.968.04
Victim of physical assault or abuse
No 276 71 25.7
Yes 50 20 40.0 1.66 0.873.16
Risk of harm to others scale
0 (None) 110 21 19.1 1
12 (Low) 28 4 14.3 0.65 0.202.11
34 (Moderate) 20 9 45.0 3.14 1.148.66
56 (High) 56 26 46.4 3.39 1.666.94
Not documented 112 31 27.7 1.60 0.843.03
Family Functioning Scale
0 (None) 84 5 6.0 1
13 (Low) 211 69 32.7 7.14 2.7518.53
46 (High) 30 17 56.7 17.34 5.3656.13
Aggressive/disruptive behaviour
No or mild (score 03) 50 8 16.0 1
Moderate (score 47) 78 22 28.2 2.26 0.905.67
High (score 810) 58 18 31.0 2.36 0.916.11
Very High (score 1120) 140 43 30.7 2.63 1.126.18
Provisional (or actual) diagnoses
Attention decit hyperactivity disorder
No 162 33 20.4 1
Yes 111 39 35.1 1.86 1.063.26
Learning or communication disorder
No 152 24 15.8 1
Yes 126 53 42.1 3.80 2.146.73
Not documented 48 14 29.2 2.48 1.145.40
Autism spectrum disorder
No 188 40 21.3 1
Yes 109 44 40.4 2.39 1.414.03

*Age included in the models as a continuous variable.

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Table 2 Mutually adjusted odds ratio (OR) of healthcare utilisation
by background characteristics in 296 subjects
Characteristic OR
Age
1114 vs. 10 2.30 1.124.74
15 vs. 10 1.02 0.462.28
Gender, female vs. male 1.26
Marital status; widowed, 1.50
separated or divorced vs. others
Caregiver distress scale 2.03
(present vs. absent)
Victim of bullying 2.66
Family Functioning Scale
(ref group none)
Low 3.33
High 8.33
Autism spectrum disorder 2.79
Learning or communication disorder 3.72
children living in traditional families, those living in
non-traditional families have been found to utilise
more mental health services and have more mental
health visits (Gaskin et al., 2008). Parental divorce
has also been found to increase the odds of children
receiving intervention for mental health needs
(Brannan et al., 2003; Gaskin et al., 2008).
As hypothesised, service complexity was related to
poor family functioning and caregiver distress.
Dysfunctional home environment, caregiver stress
and family conict predicted higher service utilisation
(Lavigne et al., 1998; Briggs-Gowan et al., 2000;
Witwer & Lecavalier, 2008; Farmer et al., 2009).
Consistent with the literature, Diehl et al. (1991)
reported that families of children with ID experienced
immense stress when caring for a child with special
needs, promoting the need for increased respite,
support groups and counselling for parents. This is
further complicated by the fact that parents of older
children with ID experienced more stress and less
supports than parents of younger children (Suelzle &
Keenan, 1981).
Children who have parents with high levels of
caregiver distress and problems with family functioning
tend to utilise more out-of-home placements such as
residential treatment and inpatient care, factors
inuencing service complexity. Frequent disruptions
in care in early childhood were more prevalent in the
high (25.3%) compared with low service complexity
group (7.2%). These children have also experience
95% CI forms of abuse or have witnessed domestic violence,
factors known to lead to placements within foster
homes, inpatient services and residential treatment as
well as other outpatient services (Barber et al., 2001;
Courtney et al., 2001; Burge, 2007).
0.622.53
0.792.86 In this study, it was found that service complexity
for children with ID was highest between the ages of
0.974.25 11 and 14 years of age, compared with those children
under 10 years. This is consistent with other ndings
1.335.32
suggesting that older children receive more mental
health services than younger counterparts (Lavigne
1.159.60 et al., 1998; Banta et al., 2013). It is possible that as the
2.0933.23 child reaches early adolescence, parents may no
1.495.20 longer be able to cope with the difculty of caring for
1.917.23
a child with such complexities and thereby seek
additional services (Maes et al., 2003; Esbensen &
Seltzer, 2011). In situations where outpatient services
and parental support services are insufcient, coupled
with parental distress and older age of the child, out-
of-home placement may be viewed by parents as the
only option for many families. Indeed, previous
research has indicated that out-of-home placement is
more evident with children over 11 years of age (Barth
et al., 2007). As the child matures into adolescence,
certain behaviours (e.g. aggression, non-compliance,
deance and self-injury) may be more difcult to
manage and the parent may feel more threatened,
leading to the need for more intensive use of services.
These ndings highlight the importance of case
management and family support services throughout
the childs life span, but particularly as the child
reaches adolescence, to ensure that families receive
the needed services to retain a child at home,
wherever possible (den Dunnen et al., 2013).
It was expected that behavioural problems such as
aggression, non-compliance, deance and harm
toward others would be associated with higher levels
of service use (Park et al., 2007; Farmer et al., 2008;
Merikangas et al., 2011). Contrary to expectations,
such behaviours did not predict service complexity in
the multivariate model. It is possible that children
with ID exhibiting high levels of aggressive behaviours
and disruptive actions are accounted for in other
variables within the model (e.g. out-of-home
placements). For example, Farmer et al. (2008) found
that children who were placed in foster care and other

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S. L. Stewart et al. Determinants of service complexity
out-of-home placements had more severe behavioural
problems than those of intact families. Similarly,
children with high rates of mental health issues are
often placed in foster care or group homes and
experience more volatility in care paths creating
greater demands on the service system including
more expensive and intensive services (James, 2011).
Moreover, child welfare involvement, poor family
functioning, a history of physical abuse, neglect,
witnessing domestic violence and deliberate self-
injury predict out-of-home placement (den Dunnen
et al., 2013).
The presence and severity of self-injury have also
been noted to increase for those with more severe
intellectual impairment in children (McTiernan et al.,
2011). In the current study, approximately one third
(34%) of the ID children with high levels of service
complexity were at risk for self-injury compared with
those children with low levels of service complexity
(22%). Non-suicidal self-harm in the general
Canadian youth population is approximately 17%
(Nixon et al., 2008), demonstrating the severity of
self-harm in this particular sample. A strong
association has also been found between self-injury
and both psychopathology and risk-taking behaviours
in addition to peer rejection, bullying/victimisation
and family maltreatment and neglect (Hay &
Meldrum, 2010; Jutengren et al., 2011; Di Pierro
et al., 2012; Hamza et al., 2012; Baiden et al., 2017b).
There are several other negative consequences when
children engage in self-injury including increased
isolation, costly medical care and restrictive treatment
practices (e.g. use of seclusion rooms and restraint
use). Moreover, children who engage in multiple
forms of self-injury often engage in aggressive,
destructive forms of behaviour (Rojahn et al., 2008;
Totsika et al., 2008; Minshawi et al., 2014) and are
more likely to receive emergency services (Hsu et al.,
2009).
In our study, children in the high service
complexity group experienced victimisation by peers
more frequently than those in the low service
complexity group (36.3% and 16.6% respectively).
Although this was a cross-sectional study and no
causal inferences can be drawn, it is possible that the
traumatic experience of bullying had a detrimental
impact on the mental health and well-being of
children (Tto et al., 2011; Copeland et al., 2013;
Espelage & Holt, 2013) increasing the need for mental
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VOLUME 61 PART 11 NOVEMBER 2017
health services. Despite the knowledge that bullying is
disproportionately higher in children with ID than
non-ID children (Limber et al., 2016), the extant
literature of bullying toward children with ID is sparse
(Flynt & Morton, 2004; Rose & Monda-Amaya,
2012). Research has indicated that children are more
likely to experience bullying if they have a more severe
disability (Rose & Monda-Amaya, 2012),
communication difculties (Cappadocia et al., 2012;
Rose & Monda-Amaya, 2012), poor problem-solving
abilities and low self-esteem (Cook et al., 2010).
Children with ID are characterised by signicant
cognitive decits, which are associated with
limitations related to learning, communication,
problem-solving and adaptive skill decits (Durkin,
2002; Carulla, 2011; Maulik et al., 2011) placing them
at increased risk for bullying and victimisation
(Taggart et al., 2010).
Clinical implications
There are a variety of implications with respect to
both policy and practice. First, children with high
levels of co-morbidity such as autism spectrum
disorder, ADHD, learning and communication
disorders require enhanced services due to their
special needs. Given the high levels of caregiver
distress associated with raising a child with
complicated needs, supporting families with respite,
in-home services such as family preservation,
transitional supports and case management, should
be implemented wherever possible. This is especially
true as the child becomes older as there is an
increased likelihood of out of home placement as a
result of aggression, non-compliance, deance and
self-injury. These behaviours become much more
difcult to manage as the child becomes older,
increasing the need to provide more intensive
supports and services.
Given the strong relationship between bullying,
child disability and socio-emotional problems, school
programming and adult supports are crucial to
reduce exposure to bullying for these vulnerable
children. Bullying is much more frequent with
children exhibiting co-morbid conditions, especially
those with autism (Cappadocia et al., 2012). These
children are more likely to be exposed to bullying,
particularly in fully inclusive classrooms, suggesting
the need for increased prevention programming,
 Journal of Intellectual Disability Research
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S. L. Stewart et al. Determinants of service complexity
especially in these educational settings (Zablotsky
et al., 2014).
Study limitations
There are limitations to this study that must be taken
into consideration. First, this is a small cross-sectional
study and precludes causal inferences. Second, the
generalisation of these ndings may be limited given
that the children within the study came from only four
mental health facilities, one of which was a tertiary
care facility specialising in developmental services.
Third, one would expect that older children
experience more lifetime admissions than younger
children by virtue of their age and this could have
affected the ndings. Fourth, the service complexity
variable incorporated multiple services. These
services were not weighted, and one may argue that a
psychiatric visit may be more reective of specialised
services than that of a social work visit.
Finally, the outcome variable was dichotomised. A
majority of children had a score of 1 or 2, and only
6.7% had scores of 5 or higher. We initially grouped
service complexity into three levels: score 01
(49.1%), score 2 (23.3%) and score 3 or higher
(27.6%), and performed multinomial logistic
regression. The determinants of service complexity of
score 2 did not differ from those of score 01. Only
learning or communication disorder was associated
with service complexity score of 2. To have sufcient
statistical power for multivariable analysis, we then
dichotomised service complexity into two groups:
low (scores 02) or high (scores 3 or higher).
Moreover, as a sensitivity analysis, we used service
complexity as a continuous variable and conducted a
linear regression analysis. The determinants of
service complexity did not differ using it as a
continuous variable. Autism spectrum disorder,
learning or communication disorder, family
dysfunction, and bullying were statistically
signicantly (P 0.02, all) associated with service
complexity, and P-value for age 1114 years was
borderline signicant (P = 0.09). Despite these
limitations, with the growing use of the interRAI
instruments, both nationally and internationally,
larger sample sizes and longitudinal data over the
lifespan that will be collected in the future will allow
the examination of additional factors associated with
service complexity. As part of this process, multiple
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interRAI instruments tailored to specic service
sectors (e.g. hospitals, mental health agencies and
schools) have been developed to facilitate service
system integration, allowing multiple applications
including improved service planning, resource
allocation and case-mix systems as well as allow
support transitions across the lifespan (Stewart &
Hirdes, 2015; Stewart et al., 2015b).
Acknowledgements
The authors would like to thank the families who
participated in the study for their time and effort. We
would also like to acknowledge the service providers
and agencies that provide services to children, youth
and their families. We wish to thank the Child and
Parent Resource Institute for the assistance with
training and implementation efforts.
Conict of interest
The authors declare that they have no conicts of
interest.
References
Armiento J., Hamza C., Stewart S. L. & Leschied A. (2016)
Direct and indirect forms of childhood maltreatment and
nonsuicidal-self-injury among clinically-referred children
and youth. Journal of Affective Disorders 200, 21217.
Baiden P., Stewart S. L. & Fallon B. (2017a) The role of
adverse childhood experiences as determinants of non-
suicidal self-injury among children and adolescents
referred to community and inpatient mental health
settings. Child Abuse and Neglect 69, 16376.
Baiden P., Stewart S. L. & Fallon B. (2017b) The mediating
effect of depressive symptoms on the relationship between
bullying victimization and non-suicidal self-injury among
children and adolescents: ndings from community and
inpatient mental health settings in Ontario, Canada.
Psychiatric Research 255, 23847.
Banks M. E., Gover M. S., Kendel E. & Marshal C. A.
(2009) Disabilities: Insights from Across Fields and Around the
World. Praeger, Westport, Connecticut.
Banta J. E., James S., Haviland M. G. & Andersen R. M.
(2013) Race/ethnicity, parent-identied emotional
difculties, and mental health visits among California
children. The Journal of Behavioral Health Services and
Research 40, 519.
Barber J. G., Delfabbro P. H. & Cooper L. L. (2001) The
predictors of unsuccessful transition to foster care. Journal
of Child Psychology and Psychiatry 42, 78590.
 Journal of Intellectual Disability Research
1065
S. L. Stewart et al. Determinants of service complexity
Barth R. P., Greeson J. K., Guo S., Green R. L., Hurley S. &
Sisson J. (2007) Outcomes for youth receiving intensive
in-home therapy or residential care: a comparison using
propensity scores. American Journal of Orthopsychiatry 77,
497505.
Boyle C. A., Decoue P. & Yeargin-Allsopp M. (1994)
Prevalence and health impact of developmental disabilities
in US children. Pediatrics 93, 399403.
Brannan A. M., Heinger C. A. & Foster E. M. (2003)
The role of caregiver strain and other familyvariables
in determining childrens use of mental health
services. Journal of Emotional and Behavioral Disorders
11, 7892.
Briggs-Gowan M. J., Horwitz S. M., Schwab-Stone M. E.,
Leventhal J. M. & Leaf P. J. (2000) Mental health in
pediatric settings: distribution of disorders and factors
related to service use. Journal of the American Academy of
Child and Adolescent Psychiatry 39, 8419.
Burge P. (2007) Prevalence of mental disorders and
associated service variables among Ontario children who
are permanent wards. Candian Journal of Psychiatry 52,
30514.
Cappadocia M. C., Weiss J. A. & Pepler D. (2012) Bullying
experiences among children and youth with autism
spectrum disorders. Journal of Autism and Developmental
Disorders 42, 26677.
Carulla L. S. (2011) Intellectual developmental disorders:
towards a new name, denition and framework for
mental retardation/intellectual disability in ICD-11.
World psychiatry 10, 17580.
Chiang P. H., Chang Y. C., Lin J. D., Tung H. J., Lin L. P.
& Hsu S. W. (2013) Healthcare utilization and
expenditure analysis between individuals with intellectual
disabilities and the general population in Taiwan: a
population-based nationwide child and adolescent study.
Research in Developmental Disabilities 34, 248592.
Cook C. R., Williams K. R., Guerra N. G., Kim T. E. &
Sadek S. (2010) Predictors of bullying and victimization in
childhood and adolescence: a meta-analytic investigation.
School Psychology Quarterly 25, 6583.
Copeland W. E., Wolke D., Angold A. & Costello E. J.
(2013) Adult psychiatric outcomes of bullying and being
bullied by peers in childhood and adolescence. JAMA
Psychiatry 70, 41926.
Courtney M. E., Piliavin I., Grogan-Kaylor A. & Nesmith A.
(2001) Foster youth transitions to adulthood: a
longitudinal view of youth leaving care. Child Welfare 80,
685717.
Dekker M. C., Koot H. M., van der Ende J. & Verhulst F.
C. (2002) Emotional and behavioral problems in
children and adolescents with and without intellectual
disability. Journal of Child Psychology and Psychiatry 43,
108798.
Di Pierro R., Sarno I., Perego S., Gallucci M. & Madeddu
F. (2012) Adolescent nonsuicidal self-injury: the effects of
personality traits, family relationships and maltreatment
2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
VOLUME 61 PART 11 NOVEMBER 2017
on the presence and severity of behaviours. European Child
and Adolescent Psychiatry 21, 51120.
Diehl S. F., Moftt K. A. & Wade S. M. (1991) Focus group
interview with parents of children with medically complex
needs: an intimate look at their perceptions and feelings.
Childrens Health Care 20, 1708.
Douma J. C., Dekker M. C., De Ruiter K. P., Verhulst F. C.
& Koot H. M. (2006) Help-seeking process of parents for
psychopathology in youth with moderate to borderline
intellectual disabilities. Journal of the American Academy of
Child and Adolescent Psychiatry 45, 123242.
den Dunnen W., Stewart S. L., Curri M., Willits E. &
Baiden P. (2013) Predictors of out-of-home placement
following residential treatment. Children and Youth Services
Review 35, 5018524.
Durkin M. (2002) The epidemiology of developmental
disabilities in low-income countries. Mental Retardation
and Developmental Disabilities Research Reviews 8, 20611.
Einfeld S. L., Ellis L. A. & Emerson E. (2011) Comorbidity
of intellectual disability and mental disorder in children
and adolescents: a systematic review. Journal of Intellectual
and Developmental Disability 36, 13743.
Esbensen A. J. & Seltzer M. M. (2011) Accounting for the
Down syndrome advantage? American Journal on
Intellectual and Developmental Disabilities 116, 315.
Espelage D. L. & Holt M. K. (2013) Suicidal ideation and
school bullying experiences after controlling for
depression and delinquency. Journal of Adolescent Health
53, S27S31.
Farmer E., Mustillo S., Burns B. & Holden E. (2008) Use
and predictors of out-of-home placements within systems
of care. Journal of Emotional and Behavioral Disorders 16,
514.
Farmer E., Southerland D., Mustillo S. & Burns B. (2009)
Returning home in systems of care: Rates, predictors, and
stability. Journal of Emotional and Behavioral Disorders 17,
13346.
Flynt S. W. & Morton R. A. (2004) Bullying and children
with disabilities. Journal of Instructional Psychology 31,
3303.
Gaskin D. J., Kouzis A. & Richard P. (2008) Childrens and
adolescents use of mental health care is a family matter.
Medical Care Research and Review 65, 74862.
Hamza C. A., Stewart S. L. & Willoughby T. (2012)
Examining the link between nonsuicidal self-injury and
suicidal behavior: a review of the literature and an
integrated model. Clinical Psychology Review 32, 48295.
Harpin S., Kenyon D. B., Kools S., Bearinger L. H. &
Ireland M. (2013) Correlates of emotional distress in out-
of-home youth. Journal of Child and Adolescent Psychiatric
Nursing 26, 11018.
Hay C. & Meldrum R. (2010) Bullying victimization and
adolescent self-harm: testing hypotheses from general
strain theory. Journal of Youth and Adolescence 39, 44659.
Herring S., Gray K., Taffe J., Tonge B., Sweeney D. &
Einfeld S. (2006) Behaviour and emotional problems in
 Journal of Intellectual Disability Research
1066
S. L. Stewart et al. Determinants of service complexity
toddlers with pervasive developmental disorders and
developmental delay: associations with parental mental
health and family functioning. Journal of Intellectual
Disability Research 50, 87482.
Hirdes J. P., Curtin-Telegdi N., Morris J. N., Fries B. E.,
Rabinowitz T., Perez E. et al. (2010) InterRAI Mental
Health (MH) Asssessment Form and Users Manual for In-
patient Psychiatry. Version 9.1. interRAI, Washington,
DC.
Hsu S. W., Lin Y. W., Chwo M. J., Huang H. C., Yen C. F.,
Lin L. P. et al. (2009) Emergency department utilization
and determinants of use by 0- to 6-year-old children with
disabilities in Taipei. Research in Developmental Disabilities
30, 77481.
Hurlburt M. S., Leslie L. K., Landsverk J., Barth R. P.,
Burns B. J., Gibbons R. D. et al. (2004) Contextual
predictors of mental health service use among children
open to child welfare. Archives of General Psychiatry 61,
121724.
James S. (2011) What works in group care? a structured
review of treatment models for group homes and
residential care. Children and Youth Services Review 33,
30821.
Jones L., Bellis M. A., Wood S., Hughes K., McCoy E.,
Eckley L. et al. (2012) Prevalence and risk of violence
against children with disabilities: a systematic review
and meta-analysis of observational studies. Lancet 380,
899907.
Jutengren G., Kerr M. & Stattin H. (2011) Adolescents
deliberate self-harm, interpersonal stress, and the
moderating effects of self-regulation: a two-wave
longitudinal analysis. Journal of School Psychology 49,
24964.
Lau C., Stewart S. L., Saklofske D. H., Tremblay P. F. &
Hirdes J. (2017) Psychometric evaluation of the interRAI
Child and Youth Mental Health Disruptive/Aggression
Behaviour Scale (DABS) and Hyperactive/Distraction
Scale (HDS). Child Psychiatry and Human Development.
https://doi.org/10.1007/s10578-017-0751-y.
Lavigne J. V., Arend R., Rosenbaum D., Binns H. J.,
Christoffel K. K., Burns A. et al. (1998) Mental health
service use among young children receiving pediatric
primary care. Journal of the American Academy of Child and
Adolescent Psychiatry 37, 117583.
Limber S. P., Kowalski R. M., Agatston P. W. & Huynh H.
V. (2016) Bullying and children with disabilities. In:
Contemporary Perspectives on Research on Bullying and
Victimization in Early Childhood Education. Information
Age Publishing, Greenwich, USA.
Ludi E., Ballard E. D., Greenbaum R., Pao M., Bridge J.,
Reynolds W. et al. (2012) Suicide risk in youth with
intellectual disabilities: the challenges of screening. Journal
of Developmental and Behavioral Pediatrics 33, 43140.
Maes B., Broekman T. G., Dosen A. & Nauts J. (2003)
Caregiving burden of families looking after persons with
intellectual disability and behavioural or psychiatric
2017 MENCAP and International Association of the Scientic Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
VOLUME 61 PART 11 NOVEMBER 2017
problems. Journal of Intellectual Disability Research 47,
44755.
Maulik P. K., Mascarenhas M. N., Mathers C. D., Dua T. &
Saxena S. (2011) Prevalence of intellectual disability: a
meta-analysis of population-based studies. Research in
Developmental Disabilities 32, 41936.
McPherson M., Arango P., Fox H., Lauver C., McManus
M., Newacheck P. W. et al. (1998) A new denition of
children with special health care needs. Pediatrics 102,
13740.
McTiernan A., Leader G., Healy O. & Mannion A. (2011)
Analysis of risk factors and early predictors of challenging
behavior for children with autism spectrum disorder.
Research in Autism Spectrum Disorders 5, 121522.
Merikangas K. R., He J. P., Burstein M., Swendsen J.,
Avenevoli S., Case B. et al. (2011) Service utilization for
lifetime mental disorders in U.S. adolescents: results of
the National Comorbidity Survey-Adolescent Supplement
(NCS-A). Journal of the American Academy of Child and
Adolescent Psychiatry 50, 3245.
Minshawi N. F., Hurwitz S., Fodstad J. C., Biebl S.,
Morriss D. H. & McDougle C. J. (2014) The association
between self-injurious behaviors and autism spectrum
disorders. Psychology Research and Behavior Management
7, 12536.
Neufeld E., Perlman C. M. & Hirdes J. P. (2012) Predicting
inpatient aggression using the InterRAI risk of harm to
others clinical assessment protocol: a tool for risk
assessment and care planning. The Journal of Behavioral
Health Services and Research 39, 47280.
Nixon M. K., Cloutier P. & Jansson S. M. (2008)
Nonsuicidal self-harm in youth: a population-based
survey. Canadian Medical Association Journal 178, 30612.
Oliver C. & Richards C. (2015) Practitioner review: self-
injurious behaviour in children with developmental delay.
Journal of Child Psychology and Psychiatry, and Allied
Disciplines 56, 104254.
Park J., Solomon P. & Mandell D. (2007) Foster care
placement among children who received inpatient
psychiatric care. Children and Youth Services Review 29,
93340.
Phillips C. D. & Hawes C. (2015) The interRAI Pediatric
Home Care (PEDS HC) assessment: evaluating the long-
term community-based service and support needs of
children facing special healthcare challenges. Health
Services Insights 8, 1724.
Raina P., ODonnell M., Rosenbaum P., Brehaut J., Walter
S. D., Russell D. et al. (2005) The health and well-being of
caregivers of children with cerebral palsy. Pediatrics 115,
e626e636.
Rojahn, J., Schroeder, S. R. & Hoch, T. A. (2008) Self-
injurious behavior in intellectual disabilities New York.
Rose C. A. & Monda-Amaya L. (2012) Bullying and
victimization among students with disabilities: effective
strategies for classroom teachers. Intervention in School and
Clinic 48, 99107.
 Journal of Intellectual Disability Research VOLUME 61 PART 11 NOVEMBER 2017
1067
S. L. Stewart et al. Determinants of service complexity

Schalock R. L., Borthwick-Duffy S. A., Bradley V. J., Instrument, Version 1 Standard Edition. interRAI,
Buntinx W. H. E., Coulter D. L., Craig E. M. et al. (2010) Washington, DC.
Intellectual Disability: Denition, Classication, and Systems Suelzle M. & Keenan V. (1981) Changes in family support
of Supports, 11th edn. American Association on Intellectual networks over the life cycle of mentally retarded persons.
and Developmental Disabilities, Washington DC. American Association on Mental Deciency 86, 26774.
Schieve L. A., Gonzalez V., Boulet S. L., Visser S. N., Sun L. (2016) A Study of Risk Factors of School Disengagement:
Rice C. E., Van Naarden Braun K. et al. (2012) Evidence from the InterRAI Child and Youth Mental Health
Concurrent medical conditions and health care use and Instrument (ChYMH). The University of Western Ontario,
needs among children with learning and behavioral London, Canada.
developmental disabilities, National Health Interview
Taggart L., Taylor D. & McCrum-Gardner E. (2010)
Survey, 20062010. Research in Developmental Disabilities
Individual, life events, family and socio-economic factors
33, 46776.
associated with young people with intellectual disability
Stewart S. L., Baiden P. & Theall-Honey L. A. (2014) and with and without behavioural/emotional problems.
Examining non-suicidal self-injury among adolescents Journal of Intellectual Disabilities 14, 26788.
with mental health needs. Archives of Suicide Research 18,
Totsika V., Toogood S., Hastings R. P. & Lewis S. (2008)
392409.
Persistence of challenging behaviours in adults with
Stewart S. L., Currie M., Arbeau K., Leschied A. & Kerry A. intellectual disability over a period of 11 years. Journal of
(2015a) Assessment and Planning for Community and Intellectual Disability Research 52, 44657.
Custodial Services: The Application of interRAI
Tto M. M., Farrington D. P., Losel F. & Loeber R. (2011)
Assessment in the Youth Justice System. In R. Corrado &
The predictive efciency of school bullying versus later
A. Leschied (Eds.), Serious and Violent Young Offenders and
offending: a systematic/meta-analytic review of
Youth Criminal Justice: A Canadian Perspective, pp. 35597.
longitudinal studies. Criminal Behaviour and Mental Health
Vancouver: Simon Fraser University Press.
21, 809.
Stewart S. L. & Hamza C. (2017) The Child and Youth
Twyman K. A., Saylor C. F., Saia D., Macias M. M.,
Mental Health Assessment (ChYMH): an examination of
Taylor L. A. & Spratt E. (2010) Bullying and
the psychometric properties of an integrated assessment
ostracism experiences in children with special health care
developed for clinically referred children and youth. BMC
needs. Journal of Developmental and Behavioral Pediatrics
Health Services Research 17, 82.
31, 18.
Stewart S. L., Hirdes J., Morris J. N., Berg K., Bjrkgren
Verhulst F. C. & van der Ende J. (1997) Factors associated
M., Declercq A. et al. (in press) interRAI Emergency
with child mental health service use in the community.
Screener in Psychiatry for Child and Youth (ESP-CY)
Journal of the American Academy of Child and Adolescent
Assessment Form and Users Manual. Version 1. interRAI,
Psychiatry 36, 9019.
Washington DC.
Witt W. P., Kasper J. D. & Riley A. W. (2003) Mental health
Stewart S. L. & Hirdes J. P. (2015) Identifying mental health
services use among school-aged children with disabilities:
symptoms in children and youth in residential and inpatient
the role of sociodemographics, functional limitations,
care settings. Healthcare Management Forum 28, 1506.
family burdens, and care coordination. Health Services
Stewart S. L., Hirdes J. P., Curtin-Telegdi N., Perlman C., Research 38, 144166.
MacLeod K., Ninan A. et al. (2015b) interRAI Child and
Witwer A. N. & Lecavalier L. (2008) Examining the validity
Youth Mental Health (ChYMH) Assessment Form and Users
of autism spectrum disorder subtypes. Journal of Autism
Manual. Version 9.3. interRAI, Washington, DC.
and Developmental Disorders 38, 161124.
Stewart S. L., LaRose L., Gleason K., Nicolson R.,
Zablotsky B., Bradshaw C. P., Anderson C. M. & Law P.
McKnight M., Knott W. et al. (2015a) interRAI Child and
(2014) Risk factors for bullying among children with
Youth Mental Health Developmental Disabilities (ChYMH-
autism spectrum disorders. Autism 18, 41927.
DD) Assessment Form and Users Manual. Version 1.
interRAI, Washington, DC. Zimmerman F. J. (2005) Social and economic determinants
of disparities in professional help-seeking for child mental
Stewart S. L., Theall L. A., Morris J. N., Berg K., Bjrkgren
health problems: evidence from a national sample. Health
M., Declercq A. et al. (2016) interRAI Child and Youth Services Research 40, 151433.
Mental Health Collaborative Action Plans (CAPs) for use
with the interRAI Child and Youth Mental Health
Developmental Disability (ChYMH-DD) Assessment Accepted 28 August 2017

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Appendix A
Coding for service complexity with interRAI ChYMH-DD.
John Wiley & Sons Ltd
Items Formal care
Contact with formal
Instruction care provider
Coding 0. No contact in last 3 years
1. No contact in last 90 days,
but contact in last 3 years
2. No contact in last 30 days,
but contact 3190 days ago
3. No contact in last 7 days,
but contact 830 days ago
4. Contact in last 7 days
but not daily
5. Daily contact in last 7 days
a. Psychiatrist
b. Social worker
c. Psychologist, psychometrist and
psychological associate
d. Occupational therapist and
physiotherapist
e. Behaviour therapist
f. Recreation, art, music and
play therapist
g. Registered nurse
h. Child/youth counsellor
i. Child protection
j. Speech language pathologist
k. Dietician
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Hospital use,
Case emergency room use,
Focus of interventions Treatment modalities management physician visit.
Code for number
Code for types of issues that Code for treatment modalities Receives of times during the
Journal of Intellectual Disability Research
were a major focus of interventions used in last 30 days formal care last 90 days
in last 30 days (or since admission (or since admission coordination (or since last assessment
if less than 30 days) if less than 30 days) services if less than 90 days ago)
0. No intervention of this type 0. Not offered and not received 0. No a. Inpatient acute hospital with
1. Offered, but refused 1. Offered, but refused 1. Yes overnight stay (non-psychiatric)
S. L. Stewart et al. Determinants of service complexity
2. Not received, but scheduled 2. Not received, but scheduled B. Emergency room visit
to start within next 30 days to start within next 30 days (not counting overnight stay)
3. Received 830 days ago 3. Received 830 days ago c. Physician visit (or authorised
4. Received in last 7 days 4. Received in last 7 days assistant or practitioner)
a. Life skills training e.g. a. Individual
communication, money management b. Group
b. Social skills e.g. interpersonal c. Family or couple
skills, etiquette d. Self-help/consumer group
c. Family functioning e.g. positive
parenting, family cohesion
d. Anger management
e. Behavioural management
f. Crisis intervention
VOLUME
g. Family preservation e.g. intensive
in-home programme
h. Family support e.g. wraparound, respite
i. Medication management
61 PART 11 NOVEMBER 2017