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Unmet Healthcare and Social Services
Needs of Older Canadian Adults With
Developmental Disabilities
jppi_346 81..91
Shahin Shooshtari*
§
, Saba Naghipur
†
, and Jin Zhang
‡
*Departments of Family Social Sciences and Community Health Sciences,
†
Faculty of Dentistry, and
‡
Department of Family Social
Sciences, University of Manitoba; and
§
St. Amant Research Centre, Winnipeg, Manitoba, Canada
Abstract The authors sought to create a demographic, socioeconomic, and health-related profile of older (40+) Canadian adults with
developmental disabilities (DD) residing in their communities, and to enhance current knowledge of their unmet health and social
support services needs. They provide a secondary analysis of cross-sectional data from the 2001 and 2006 Participation and Activity
Limitation Surveys (PALS). The study population comprised PALS respondents who: (a) were at least 40 years of age at the time of
the survey and (b) were reported having a DD. Weighted data were used to describe and compare the profiles of the study population
and the comparison group (PALS respondents age 40+ with other types of disability), and to estimate the prevalence of reported
unmet healthcare and social support services needs. Logistic regression analyses determined the extent to which these needs affected
the target population’s overall health status. The data revealed that an estimated 136,570 Canadians age 15+ reportedhavingaDDin
2006. Of these, 66,560 (48.7%) were at least 40 years of age. An estimated 47.7% of this population rated their overall health status
as either fair or poor. The prevalence of reported unmet healthcare and social services needs decreased between 2001 and 2006 for
both study groups, but it was still much higher for older individuals with DD than for the comparison group in 2001 and 2006.
Controlling for the effects of all the other factors, the authors found that reported unmet needs did not significantly affect
respondents’ overall health status. The authors concluded that compared to Canadians with other types of disability, those with DD
were more likely to report unmet healthcare and social support services needs. Further research is needed to explore policies and
programs which support the healthy and active aging of this population.
Keywords:
aging, Canada, developmental disabilities, healthcare, intellectual disabilities, national survey, unmet needs
INTRODUCTION
Individuals with developmental disabilities (DD) make up a
significant portion of the Canadian population. The most recent
published estimate of prevalence of DD at the national level for
Canadians is based on the Participation and Activity Limitation
Survey (PALS) conducted by Statistics Canada in 2001. According
to this source, an estimated 0.5% of Canadians (120,140 indi-
viduals) age 15 or older reported having a DD in 2001. Of these,
an estimated 55,850 individuals were 45 years of age or older
(Cossette & Duclos, 2002).
Life expectancy for persons with DD has increased signi-
ficantly over the past 50 years and now approaches that of
the general population (World Health Organization, 2000).
Researchers have attributed this increase to many factors, includ-
ing improved living conditions, nutritional status and advances in
healthcare, as well as better access to health services (Cooper,
Melville, & Morrison, 2004; Delorme, 1999; Salvatori, Tremblay,
Sandys, & Marcaccio, 1998). As a result, an increasing number of
individuals with DD now survive into late older age.
As adults with DD age, they experience many health-related
challenges common to the general older population. However,
the challenge of their healthcare is complicated by the diverse
syndrome-specific and age-related health issues that they develop
(Perkins & Moran, 2010). For instance, older adults with Down
syndrome experience earlier age-related physical and cognitive
declines, including dementia (Levy et al., 2006). Older adults
with cerebral palsy, who often have a DD, are at a greater risk
of musculoskeletal problems, including reduced mobility and
chronic pain (Svien, Berg, & Stephenson, 2008). Aging issues have
also been identified for many other conditions, including Prader–
Willi and Fragile X syndromes (Janicki, Henderson, & Rubin,
2008). Disparities in mental health are also of great concern
(Lunsky & Balogh, 2010). An estimated 30 to 60% of persons with
moderate or severe DD have a mental disorder, which is especially
concerning given the well-known difficulties with accurate diag-
nosis and treatment in people with dual diagnoses (National
Coalition on Dual Diagnosis, 2010).
Received December 31, 2011; accepted March 31, 2012
Correspondence: Shahin Shooshtari, PhD, Department of Family Social
Sciences, 219 Human Ecology Building, University of Manitoba, Winnipeg,
Manitoba, Canada R3T 2N2. Tel: +1 204 474-8052; Fax: +1 204 474-7592;
E-mail: Shooshta@cc.umanitoba.ca
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Journal of Policy and Practice in Intellectual Disabilities
Volume 9 Number 2 pp 81–91 June 2012
© 2012 International Association for the Scientific Study of Intellectual Disabilities and Wiley Periodicals, Inc.
The existing research suggests that, despite their poorer physi-
cal and mental health and greater health needs, older adults with
DD are at a greater disadvantage for accessing healthcare services
which they need. (Bigby, 1998; Janicki et al., 2002; Krahn,
Hammond, & Turner, 2006). As a result of their underlying con-
ditions and associated comorbidities, many persons with DD
require lifelong family and organizational support for a broad
range of health and social service issues, including (but not
limited to) housing, employment, education, recreation, and
transportation. In 2004, the Canadian government published a
policy report, Seniors on the Margins: Aging with a Developmental
Disability (National Advisory Council on Aging, 2004), which
highlighted several key issues important to promoting this
population’s quality of life. First, the increased life expectancy of
persons with DD coupled with their deinstitutionalization or
retention in the community has made it common for aging
parents or siblings to remain as their primary caregivers—placing
a large burden on these families, who require better access to the
information and support services that can assist them in giving
appropriate care (Botsford & Rule, 2004). Second, the report
emphasized the importance of community participation, includ-
ing structured leisure activities, day programs, and friendships,
along with promoting an individual’s own decision making in
cases where they are able. Employment is also seen as a useful way
to maintain social contact, in addition to helping to provide
financial security. Lastly, the report considered the diversity of
living conditions facing adults with DD. While noting that many
older persons with DD live in rural or smaller urban areas with
relatively few housing choices, the paper pointed out that the
general living arrangements of the older population with DD are
not fully known.
To develop evidence-based policies and programs that fully
include older Canadians with DD, government departments need
to know more about their characteristics (such as who they are,
where they live, which kind of supports and services they have
access to, and their unmet needs for both healthcare and social
support services). While Canadian-based research in this area is
very limited, the few studies from Ontario concluded that, as they
age, people with DD usually fall into the cracks that exist between
support services for older adults in general and for adults with
disabilities (Brown & Percy, 1999; Brown, Raphael, & Renwick,
1997; Pedlar, Hutchison, Arai, & Dunn, 2000; Salvatori, Tremblay,
& Tryssenaar, 2003). Research conducted in other countries—
such as Australia, the Netherlands, New Zealand, the UK, and the
United States—has uncovered similar problems (Ashman, Suttie,
& Bramley, 1993; Bigby, 2002; Hand & Reid, 1996; Strydom, Has-
siotis, & Livingston, 2005; Van Schrojenstein Lantman-de Valk
et al., 2004). In Canada, better coordination between the elder
care and disability sectors is needed. This has proven difficult
since both sectors have limited resources and are hesitant to
take on the needs of another sector. The present study makes
the first attempt to describe the nationwide population of older
Canadians living with DD, the importance of which has been
acknowledged by many, including the National Advisory Council
of Canada (2004).
This study adopted the International Classification of
Functioning, Disability, and Health (ICF) framework proposed
by the World Health Organization (2001a). The ICF recognizes
that the physical and social environments in which people with
impairments live, as well as their personal characteristics, con-
tribute to many of the disabilities they experience (see Figure 1).
The framework sets out the central thesis that disability is less
of a biological fact than a social construct—that is, the nature
of a disability arises from society’s inability to deal with biolo-
gical differences in ability. The ICF proposes that an individual’s
functioning and disability (e.g., body functions, activities, and
participation) depend upon an interaction between his or her
current health condition and contextual factors (environ-
mental and personal). This approach makes it a useful tool for
identifying and understanding factors that contribute to health
disparities experienced by persons with disability, including
those with DD.
STUDY OBJECTIVES
Using the most recent national data for Canadians with dis-
abilities, we set out the following as main objectives for the study:
(a) create a demographic, socioeconomic, and health-related
profile of Canadians age 40+ with DD (i.e., the target population)
and compare that with the profile of Canadians of the same age
but with other types of disability (i.e., the comparison group); (b)
compare the estimated prevalence of reported unmet healthcare
and social support services needs between persons with DD and
those with other types of disability; (c) identify factors associated
with reported unmet healthcare needs and social support services
needs among persons age 40+ with DD; and (d) determine the
extent to which the target population’s reported unmet needs for
healthcare and social support services are associated with their
overall health status.
We addressed the four study objectives by undertaking an
in-depth analysis of cross-sectional data from the 2006 PALS. We
also analyzed data from the 2001 PALS either to compare between
the two survey cycles (e.g., proportion of older adults with a
DD who reported unmet healthcare and social support services
needs) or to provide information on the measures not available in
the 2006 cycle of the PALS (e.g., information on drinking and
smoking behaviors).
Health Condition
(disorder/disease)
Environmental
Factors
Personal
Factors
Body Functions
and Structures
Activities Participation
FIGURE 1
International Classification of Functioning, Disability, and
Health (ICF) schematic framework proposed by the World
Health Organization.
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unmet Healthcare Needs in Canada
82
METHODS
Study Design
This study involves a secondary analysis of cross-sectional
data from the 2001 and 2006 PALS.
Data Source
We obtained the data for the study mainly from the 2006
PALS, Canada’s principal national survey focusing on the parti-
cipation of persons with activity limitations. PALS, funded by
Human Resources and Social Development Canada (Statistics
Canada, 2002; Statistics Canada, 2007), was administered by
Statistics Canada. Statistics Canada is the federal agency in charge
of producing statistics, which help Canadians better understand
their country, including its population (number and characteris-
tics), resources, economy, society, and culture. PALS is postcen-
sual, meaning the Canada Census was used as a sampling tool to
identify persons with disabilities.
PALS data collection took place between October 30, 2006,
and February 28, 2007. Interviews were conducted by telephone
with the interviewers completing a computer-assisted question-
naire, which has been shown through other surveys to improve
the accuracy of the data collection in telephone surveys. Inter-
views by proxy were allowed and used when the respondent was
absent for the duration of the survey, the respondent could not
speak English or French, or the respondent could not participate
due to a physical or mental condition. Every effort was made to
contact the respondent directly; and if the respondent was not
available when the interviewer called, follow-up attempts were
made. When proxy interviews were required, someone such as a
spouse, parent, child, or carer responded on their behalf. In many
cases, the proxy lived in the same household and may have been
related to the individual. However, it is possible that the proxy
may not have lived in the same household or have been related,
in which case, the person who was able to provide the best data
quality was used as the proxy (Statistics Canada, 2007).
Two separate questionnaires, one for adults (15+) and one for
children (<15), were administered. We based our study on data
from the adult survey. The response rate to the PALS 2006 adult
survey was 73.9% and proxy rate was 12.1% (Statistics Canada,
2007).
The PALS adult survey targeted the population of adult
individuals living in private households and in some noninsti-
tutional collective households in all 10 Canadian provinces and
three territories who answered “yes” to at least one of the two
disability questions in the 2006 Canada Census: (a) “Do you
have any difficulty hearing, seeing, communicating, walking,
climbing stairs, bending, learning or doing any similar activity?”
and (b) “Does a physical condition or mental condition or health
problem reduce the amount or kind of activity you can do:
at home; at work or at school; in other activities, for example,
transportation or leisure?” Based on these responses, a sample of
47,793 individuals, including 38,839 adults and 8,954 children,
made up the 2006 PALS study sample. Only those living in
Canada at the time of the census were included. The survey
excluded the population living on First Nations reserves (i.e.,
Canadian indigenous populations), as well as those living in insti-
tutions (Statistics Canada, 2007).
As mentioned above, in a few instances, we analyzed data from
the 2001 PALS either to compare between the two survey cycles
or to provide information on the measures not included in the
2006 cycle of the PALS. The 2001 and 2006 PALS target popula-
tions and sampling methods were similar. However, some efforts
were made to make the 2006 PALS survey more representative
of Canadians with disabilities (Statistics Canada, 2007). For
instance, the population living in First Nation communities
or resident in the territories were not included as part of the
PALS survey in 2001, but were included in 2006. There were also
changes to the Census “collective dwelling” classification that
allowed PALS to cover a greater number of collective dwellings in
the 2006 PALS (Statistics Canada, 2007).
Study Sample
For the purposes of this study, we selected PALS respondents
who: (a) were at least 40 years old at the time of the survey
interview and (b) reported having an intellectual or DD. The
existence of an ID or DD
1
was extrapolated from the response to
the following question in the PALS: “Has a doctor, psychologist or
other health professional ever said that you [. . .] had a develop-
mental disability or disorder? These include, for example, Down
syndrome, autism, Asperger syndrome, mental impairment due
to a lack of oxygen at birth, etc.” A binary variable was created in
the data set to distinguish individuals who reported having a DD
from those who reported not having a DD—but having another
type or types of disability, including one or more of the following:
difficulty hearing, difficulty seeing, speech problems, mobility
limitations, agility problems, pain, learning disabilities, memory
impairments, or psychological disabilities.
Gerontologists mostly define “old age” chronologically,
usually starting with age 65. However, given the existing evidence
of premature aging of persons with some DD (e.g., Down syn-
drome), this study, consistent with prior research (e.g., Ashman
et al., 1993), used a cutoff point of age 40 to identify “older adults
with a DD.” Using this age cutoff point also provided us with a
large enough sample size to conduct the more in-depth multi-
variate analyses.
Independent Variables
Demographic characteristics The PALS used specific questions
to measure age, sex, living arrangements, and family status.
It measured respondents’ ages at the time of the survey in years
and defined age as a continuous variable. Respondents’ sex
was defined as a dichotomous variable—coded as 1 for males and
2 for females. The survey asked respondents to identify their
family status and living arrangements in one of the 25 cate-
gories. For the current study, we collapsed the response cate-
gories and defined a new variable to report respondents’ family
1
For the purposes of this study, we considered an intellectual disability
as a developmental disability and only use the designation “developmental
disability.”
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unmet Healthcare Needs in Canada
83
status and household living arrangements into one of the follow-
ing four categories: (a) married or common-law partner; (b)
unmarried, but living with family; (c) lone parent (of any marital
status, with at least one child living in the same dwelling); and (d)
persons not in a census family.
Socioeconomic characteristics We used two indicators to assess
respondents’ socioeconomic status: highest level of education
(measured as highest degree, certificate, or diploma received)
and main sources of income. The PALS used a variable with 11
response categories to describe respondents’ highest level of edu-
cation. For this study, due to small cell sizes, we collapsed the
response categories and defined a new variable to measure and
report respondents’ highest educational degree into one of the
following categories: (a) secondary school graduation certifi-
cate; (b) postsecondary education; and (c) none. The PALS asked
the respondents a series of yes/no questions about receiving
any amount of income from the following sources: wage and
salary; self-employment; employment insurance; income from
assistance; disability pension; income insurance, and Worker’s
Compensation.
Health-related characteristics Three indicators were used to
gather information on the health status of the PALS respondents.
The indicator of self-rated health was used to measure respon-
dents’ overall health status. The following section describes
this indicator as the dependent variable. In addition, we used
data from the 2001 PALS to provide descriptive information
on smoking and drinking behaviors. This study classified PALS
respondents who reported smoking sometimes or often as
smokers (coded as “2”); we defined those who reported never
smoking as nonsmokers (coded as “1”). The study also classified
PALS respondents into two categories based on their drinking
habits: (a) those who reported drinking beverage alcohol occa-
sionally (i.e., drink less than once per week) or never; and (b)
those who reported drinking it regularly (i.e., drink at least once
per week).
Healthcare and social support needs To measure their need for
help with activities of daily living (ADLs), or instrumental activi-
ties of daily living (IADLs), PALS asked the respondents a series of
yes/no questions. More specifically, the survey asked respondents
if, because of their condition, they require assistance with the
following tasks: preparing meals, everyday housework, attend-
ing appointments and running errands, personal finances, and
personal care. For each specific activity, those who responded
“yes” were classified as “those who need help with that particular
activity” and coded as “1” and those who responded “no” were
classified as “those who did not need help with that particular
activity” and coded as “0”.
Unmet healthcare and social support needs To determine the
degree of unmet healthcare and social support needs, PALS asked
the respondents: “In the past 12 months, was there ever a time
when you felt you needed healthcare or social services because
of your condition, but you did not receive them?” Respondents
who answered “yes” were coded as “1” and classified as reporting
unmet healthcare and social support services needs. Those who
responded “no” were coded as “0” and classified as not reporting
unmet needs for healthcare and social support services. PALS
then asked those who reported unmet needs whether the follow-
ing factors were reasons for not receiving the care they needed: (a)
not covered by insurance; (b) too expensive; (c) condition not
serious enough; (d) did not know where to obtain the service; and
(e) other reasons.
Healthcare utilization The only indicator used to study utiliza-
tion of health services was frequency of contact with a physician
during the last 12 months. Respondents were classified into one of
the following categories: (a) those who reported that they saw a
physician once a month; (b) those who reported that they saw a
physician less than once a month; (c) those who reported no
contact with a physician in the last 12 months; or (d) those who
did not answer this question (missing data).
Dependent Variable
General health status We used the single item self-rated health
indicator as the main study outcome measure. PALS respondents
were asked to rate their overall health status on a 5-point scale
from1(poor)to5(excellent), with higher scores indicating better
overall health. For the descriptive analyses, we created a new
variable of self-rated health with three response categories, clas-
sifying survey respondents into one of the following groups: (a)
those who rated their overall health status as either excellent or
very good; (b) those who reported their overall health as good; or
(c) those who reported their overall health status as either fair
or poor. Some 11.5% of the population had missing data. The
decision to collapse the response categories into three was based
on the frequency distribution of the responses to the self-rated
health question. Due to the small number of respondents who
rated their overall health status as excellent, we combine that
response category with the “very good” self-rated health category.
Moreover, the two response categories of “fair” and “poor” were
combined. For the multivariate analyses, because a relatively low
proportion of respondents rated their health as excellent (14.1%)
but almost half of the respondents (an estimated 47.7%) rated
their overall health as fair or poor, we subsequently dichotomized
this variable into positive self-rated health (i.e., a rating of excel-
lent, very good, or good) and negative self-rated health (i.e., a
rating of fair, or poor). We also excluded those with missing data
(11.5%); these respondents did not differ significantly from those
who remained in the final sample for multivariate analyses in
terms of age, sex, and socioeconomic status.
Analytical Approach
Each respondent to the PALS 2006 represented not only him
or herself, but also other people of the same age and sex, who were
not sampled. Thus, a weight was assigned to each respondent to
PALS to create a national sample. For the purpose of analyses
presented in this paper, data were weighted using the master
weight variable in the data file to represent the populations of
interest (i.e., those with a DD and with other types of disability)
at the national level in 2006.
We used the weighted data and run frequencies to des-
cribe and compare the demographic, socioeconomic, and
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unme t Healthcare Needs in Canada
84
health-related profile of the study population (i.e., those with
aDDage40+) and the comparison group (i.e., those ages 40+
with other types of disability). We also used the weighted data to
estimate the prevalence of reported unmet healthcare and social
support services needs. We examined the cross-sectional associa-
tion between each study variable and the outcome of interest (i.e.,
reported unmet health and social support services needs) using a
chi-square (c
2
) test. To determine the extent to which reported
unmet healthcare and social support services needs affected the
target population’s overall health status, we conducted multivari-
ate regression analyses. Since our outcome measure (self-rated
health) was a binary variable, we employed logistic regression.
We calculated and reported odds ratios and their 95% confi-
dence intervals (CIs). We considered results at the 0.05 level to be
statistically significant. We performed data analysis using SPSS
software, version 15 (SPSS Inc, Chicago, IL, USA). We used the
bootstrapped weights and the Proc Logistic in SUDAAN (Release
9.0.1) for variance estimation purposes to fully account for
the complex sampling design of the survey. Bootstrapping is a
resampling method, where a total of 1,000 subsamples (with
replacement) are selected from the main survey sample and there
is a set of weights for each subsample, calculated by Statistics
Canada. In the case of PALS, there is a set of 1,000 bootstrapped
weight variables in the master data file, which when used allow
researchers to make use of complex survey design information
and calculate more reliable estimates of variance and CIs.
Ethical Considerations
The University of Manitoba’s Health Research Ethics Board
approved this study. Statistics Canada and the Social Sciences and
Humanities Research Council of Canada also approved access to
the PALS master data files at the Manitoba Research Data Centre
(RDC) in Winnipeg (Canada).
RESULTS
In 2006, Canada had approximately 4,215,530 individuals
age 15+ who reported having a disability. An estimated 55% of
this population were females and 45% were males. An estimated
14.9% of this population were between the ages of 15 and 39, and
85.4% were 40 years of age and older. The mean age of this latter
group was 59.23 ⫾ 18 years. Of the total population age 15+ with
a disability, about 3.2%, or 136,570 individuals, reported having a
DD. Of these, 66,560 (48.7%) were at least 40 years of age. These
individuals (i.e., those 40 and older having a DD) formed the
study population. An estimated 3,532,710 individuals age 40+
reported having disabilities other than developmental, including
problems with hearing, seeing, communication, mobility, agility,
pain and discomfort, learning difficulties, memory problems, and
psychological conditions. These individuals formed the compari-
son group. For purposes of descriptive analyses, we compared
persons with DD age 40+ (n = 66,560) with persons of the same
age group who reported having non-DD (n = 3,532,710).
As shown in Table 1, the population with a DD age 40+
(53.5 ⫾ 10 years) had a lower mean age than the comparison
group (60.5 ⫾ 14 years). The older population with a DD was
composed of more males than females, while the comparison
group had a greater proportion of females than males. Compared
to the older population with other types of disability, those with
DD were less likely to be married or in common-law relation-
ships. Compared to the population with a DD, persons with
non-DD were more likely to have obtained a postsecondary
education, but rates of secondary school graduation were
similar. Data also revealed that wages, salary, self-employment,
and employment insurance were the most common sources of
income for persons with disabilities but not for those with DD,
who reported disability pension as the most common source of
their income (Table 1).
When asked to rate their overall health, a high proportion of
respondents from the both groups reported fair or poor health
status (an estimated 47.7% and 39.6%, respectively). In fact, “fair
or poor health” was the most common status reported. Persons
without a DD were, however, less likely to rate their health as “fair
or poor.” The difference in self-rated health between the target
population and the comparison group was not statistically sig-
nificant (c
2
= 2.54, d.f. = 2, p = 0.07).
Examination of health behaviors indicated that a slightly
higher proportion of the target population were smokers com-
pared to the comparison group (an estimated 28.4% vs. 20.5%).
With regard to drinking behavior, a slightly lower proportion
of the target group (an estimated 16.7%) compared to the
comparison group (an estimated 23.5%) were regular drinkers.
For each ADL or IADL, a higher proportion of the target
population reported requiring assistance than did the compari-
son group. For example, an estimated 55.4% of the target popu-
lation reported requiring assistance with personal finances,
compared to only an estimated 15.8% of the comparison group.
Data from PALS also showed that a much higher proportion
of the target population than that of the comparison population
reported unmet health and social support service needs (an esti-
mated 21.6% vs. 12.5%). When respondents who reported unmet
needs were asked about the reasons for not receiving the needed
care, they reported “cost of care” as the most common barrier
(46%). Other reasons “not specified” and “care not being covered
by insurance” were the next two commonly reported barriers
(19.4% and 15.8%, respectively; see Table 1).
With regard to healthcare utilization, individuals with DD
reported accessing the services of physicians more frequently than
those with other disabilities. For example, slightly more than half
of the population with a DD (an estimated 50.6%) reported that
they had contacts with a physician at least once a month during the
previous 12 months, while only 37.6% of the comparison group
reported that frequency of contacts with physicians during the
same time period. The majority of individuals in both the target
population and the comparison group reported being satisfied
with their life (an estimated 73.8% and 78.9%, respectively).
We estimated the prevalence of reported unmet healthcare
and social support services needs based on both 2001 and 2006
PALS surveys and compared persons with DD to those with other
types of disability. Results showed that the prevalence of reported
unmet needs decreased between 2001 and 2006 for both study
groups, but it remained much higher for older individuals with
a DD than for the comparison group in both 2001 and 2006
(see Figure 2).
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unme t Healthcare Needs in Canada
85
TABLE 1
Sociodemographic characteristics, healthcare and social support needs, and healthcare utilization among older adults with
developmental disabilities and with other types of disabilities, age 40+ (2006)
Measure
Population with developmental
disabilities age 40+ (n = 66,560)
Population with other types of
disability age 40+ (n = 3,532,710)
Demographic characteristics
Age
Mean 53.5 ⫾ 10 years 60.5 ⫾ 14 years
Median 50 60
Sex
Male 57.3 44.3
Female 42.7 55.7
Living arrangements/family status
Married or common-law partner 36.0 58.9
Unmarried with family 12.4 1.7
Lone parent 3.7 7.1
Not census family 47.2 32.3
Socioeconomic characteristics
Highest degree, certificate or diploma
None 61.0 35.4
Secondary school graduation certificate 16.4 22.3
Postsecondary education 21.9 42.3
Missing ——
Main sources of income
Wages and salary, self-employment, or employment insurance 31.8 31.9
Income from assistance 29.4 8.3
Disability pension 33.1 17.5
Income insurance 8.3 5.6
Worker’s compensation 9.0 5.1
Health-related characteristics
Self-rated general health status
Excellent or very good 14.1 22.5
Good 26.7 29.8
Fair or poor 47.7 39.6
Missing 11.5 8.1
Use of tobacco (2001 PALS)
Yes (sometimes or often) 28.4 20.5
Use of alcohol (2001 PALS)
Abstainer or occasional drinker (<1 per week) 78.4 72.2
Regular drinker (1+ per week) 16.7 23.5
Healthcare and social support needs
Help with activities of daily living (ADLs)
Preparing meals 52.6 19.8
Everyday housework 48.0 31.3
Appointments/running errands 55.1 32.6
Personal finances 55.4 15.8
Personal care 34.5 10.6
Unmet healthcare or social support needs
Ye s 21.6 12.5
Reasons for not receiving help which was needed
Not covered by insurance 38.6 32.7
Too expensive 44.1 46.0
Condition not serious enough — 9.4
Not knowing where to obtain 8.4 19.4
Other 34.1 15.8
Healthcare utilization
Frequency of contact with a physician
Once per month 50.6 37.6
Less than once per month 39.4 52.1
Never 4.4 6.8
Missing 5.6 3.5
Usually happy with life
Ye s 73.8 78.9
No 12.5 8.3
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unme t Healthcare Needs in Canada
86
To determine the factors associated with reported unmet
healthcare and social support services needs, we cross-tabulated
the reported unmet needs variable with a number of study vari-
ables, including respondents’ age, sex, living arrangements and
family status, education, frequency of contact with a physician,
life satisfaction, and self-rated health. Results for a large number
of variables were not releasable due to low sample sizes; Table 2
summarizes the rest. According to this table, although respon-
dents who were married, living in common-law relationships, or
unmarried but living with family were more likely than those
not living in a census family to report unmet needs (29.4% vs.
17.6%), the difference was found not to be statistically significant.
That was also true for frequency of contacts with physicians.
Although those who had at least one contact with a physician per
month during the past 12 months prior to the PALS were more
likely than those with a lower frequency of contacts to report
unmet needs (30.8% vs. 19%), the difference was not statistically
significant. The only factor associated with reported unmet needs
found to be significant was sex, with males being twice as likely as
females to report unmet needs (c
2
= 13.581, p < 0.0001).
To examine whether reported unmet healthcare and social
support services needs are associated with self-reported health
status, we conducted logistic regression modeling controlling for
the effects of other potential contributing factors, including sex,
living arrangements and family status, education, and frequency
of contacts with physicians. Results showed that, controlling for
the effects of all other factors, frequency of contacts with a phy-
sician, and living arrangements and family status were signifi-
cantly associated with the study outcome. More specifically, older
individuals with a DD who had no contacts with a physician or
less than one contact per month during the 12 months prior to
PALS had significantly increased odds of reporting negative self-
rated health (Adjusted Odds Ratio (AOR) = 2.85 (95% CI: 1.15,
7.11)). Older individuals with a DD who were not living in census
families (i.e., living alone or in group homes) also had signifi-
cantly increased odds of reporting negative self-rated health
(AOR = 5.86 (95% CI: 2.12, 16.21)). Controlling for the effects of
all other factors, we found no significant effect of reported unmet
needs on respondents’ overall health status (Table 3).
DISCUSSION
To the best of our knowledge, this is the first study utilizing a
national sample to profile older adults with DD and to examine
the prevalence of their unmet health and social support services
FIGURE 2
Estimated prevalence of reported unmet healthcare and social
support services, Canadians with DD aged 40+ compared to
Canadians with other types of disability aged 40+, PALS 2001
and 2006.
TABLE 2
Reported unmet healthcare and social support services needs by selected characteristics among older adults with developmental
disabilities, age 40+ (2006)
Selected character istics
% of reported unmet needs
c
2
statistic p-valueYe s No
Sex 13.581 <0.0001
Male 30.0 70.0
Female 14.3 85.7
Living arrangements/family status 2.491 NS
Married or common-law or unmarried with family 29.4 70.6
Not census family 17.6 82.4
Frequency of contact with a physician 2.008 NS
At least once per month 30.8 69.2
Less than once per month or never 19.0 81.0
Self-rated health 0.364 NS
Positive 21.4 78.6
Negative 16.7 77.8
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unme t Healthcare Needs in Canada
87
needs and related factors. Many, including the National Advisory
Council of Canada (2004), have acknowledged the importance of
creating such a profile with national level data. Five key findings
emerged from this study.
First, we found that the sociodemographic profile of older
Canadians with DD differs from the profile of older Canadians
with other types of disabilities. Unfortunately, the data source
used did not provide information on older Canadians without
disability for use as another reference group. In terms of socio-
demographic characteristics, we found that, as a group, older
Canadians with a DD are younger than older Canadians with
other types of disability. Furthermore, we found more men than
women among the older population with a DD. Older Canadians
with DD were also less likely than older Canadians with another
type of disability to be married or be in common-law relation-
ships, which may signal that they have less family support for
health and social participation. Older Canadians with a DD also
had greater educational disadvantages. Due to large proportion of
missing data, we could not produce any reliable information on
personal or household income levels for the purpose of this study.
However, our data showed that a very high proportion of persons
with a DD rely on disability pensions as their main source of
income. Thus, overall, our data showed that older Canadians
with DD experienced greater disadvantages in terms of the social
determinants of health. It should be noted, however, that we
lacked reliable data on other important social determinants of
health, including employment status, housing, social participa-
tion, frequency of social contacts, and social networks.
Second, we found that the health profiles of older Canadians
with DD differ from older Canadians with other types of disa-
bilities. Take, for example, health behaviors. We examined two of
the most common lifestyle risk factors, smoking tobacco and
drinking alcohol, and found that persons with DD age 40+ were
more likely to smoke than those of the same age group with other
types of disabilities, but were less likely to drink alcohol on a
regular basis. These findings agree with findings from prior
research, which reported smoking as a common health risk factor
among persons with intellectual disabilities (ID) and DD (e.g.,
Wilkinson, Culpepper, & Cerreto, 2007). However, some studies
found that adults with severe to moderate ID, especially those in
congregate residential care, smoked tobacco at a lower rate than
the population without these types of disabilities (McGuire,
Daly, & Smyth, 2007). The rate of smoking among community-
dwelling adults, especially those with mild ID, is reportedly higher
than or level with the general population (Gale, Naqvi, & Russ,
2009; Rimmer, Braddock, & Marks, 1995; Tracy & Hosken, 1997).
It is important to note that the PALS data provided insufficient
sample sizes to reliably analyze the degree of severity of the DD
for this report. Our results, however, suggest that smoking edu-
cation and prevention programs are as important for the DD
population as they are for the general population. The PALS
provided no information on such other important health behav-
iors as physical activity, eating habits, and nutrition.
The target population’s functional health status was measured
by their need for help with ADLs or IADLs. We found that older
persons with DD had poorer functional health statuses, since
they were more likely to report needing help with preparing
meals, personal finances, and personal care. Such needs could be
addressed by investing more in community-based social support
services, including home care. The various provinces in Canada
have different programs to provide home care to their residents,
but several jurisdictions have noted that older persons with a DD
have difficulties in accessing home care (Ouellette-Kuntz, 2005).
Self-rated health, another health indictor used in this study,
was assessed by a single question, and it is one of the most com-
monly used measures to assess the overall health status of indi-
viduals. This study used self-rated health as the main outcome
measure. Numerous studies have demonstrated its validity, and
it has proven to be one of the most consistent predictors of
mortality, morbidity, and change in functional health status
(Benyamini & Idler, 1999; Burstrom & Fredlund, 2001; Kaplan
et al., 1996). Although all national health surveys in Canada
aimed at the general population (e.g., National Population Health
Survey) or older adults (e.g., Canadian Community Health
Survey—Healthy Aging) have consistently assessed self-rated
health, this is the first attempt to provide such information at the
national level for older adults with a DD. Recent data for Cana-
dians age 25+ show that the majority (62%) reported very good
or excellent health. Only 11.6% reported fair or poor health. At
older ages, the prevalence of very good/excellent health declines,
and the prevalence of fair/poor health rises. Nonetheless, the
percentage of older adults reporting very good/excellent health
exceeded the percentage reporting fair/poor health (Ramage-
Morin, Shields, & Martel, 2010; Statistics Canada, 2011). Our
results, based on a national sample of Canadians with disabilities,
show that fair or poor ratings of health are the most common
status among both those who are aging with a DD and those
aging with other types of disabilities. More specifically, we found
that an estimated 39.6% of older individuals with nondevelop-
mental type disabilities rated their health as either fair or poor. A
much higher proportion of older individuals with a DD (47.7%)
rated their health as either fair or poor.
Our third key finding relates to reported unmet healthcare
and social support services needs. In particular, we found that,
compared to Canadians with other types of disability, those with
a DD are more likely to report unmet healthcare and social
TABLE 3
Predictors of negative self-rated general health among older
Canadians with developmental disabilities, age 40+ (2006)
Selected character istics AOR (95% CI)
Sex
Male 0.76 (0.32, 1.84)
Highest degree, certificate, or diploma
Secondary school graduation certificate
or higher
0.98 (0.32, 3.01)
Frequency of contact with a physician*
Less than once a month, or never 2.85 (1.15, 7.11)
Living arrangements/family status***
Live alone 5.86 (2.12, 16.21)
Unmet healthcare or social support services
Yes 2.34 (0.54, 10.16)
Note: *p < 0.05, **p < 0.01, ***p < 0.001.
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unme t Healthcare Needs in Canada
88
support services needs. Although the estimated prevalence of
reported unmet needs was lower in 2006 than in 2001 for both of
the studied populations, the population with DD had a higher
estimated prevalence at both times than the population with
other types of disability. Canadians age 40+ with other types of
disabilities had an estimated prevalence of reported unmet needs
very close to that for Canadians in general (about 12%; Sanmar-
tin, Houle, Tremblay, & Berthelot, 2002). In 2002, Sanmartin and
colleagues analyzed data from the Canadian Community Health
Survey (CCHS) for the household population age 12+ and found
that the percentage of the population reporting unmet needs
increased from 4% in 1994/95 to 6% in 1998/99 and then to 12%
in 2000/01.
Interestingly, when we examined frequency of contacts with a
physician in the 12 months prior to PALS, we found that persons
with a DD contacted physicians more frequently but remained
more likely to report unmet healthcare and social support services
needs, as well as fair or poor health status. Results such as these
suggest that access to physician services is not sufficient by itself
to meet the broad healthcare and social support needs of older
individuals with DD. Frequent contacts with physicians may
reflect the fact that older individuals with a DD are seeking help to
meet their needs. A number of factors may contribute to this,
including healthcare professionals lacking experience and exper-
tise in treating persons with DD (Kerins, Petrovic, Gianesini,
Keilty,& Bruder,2004; Tyler,Rader, Campbell, Zyzanski,& Panaite,
2009). For example, physicians themselves commonly report that
they are not prepared or sufficiently trained to treat patients with
DD (Hogg, 2001; Phillips, Morrison, & Davis, 2004).
Inadequate knowledge of the services by physicians and
resources available for persons with DD is another contribut-
ing factor (Lennox, Diggens, & Ugoni, 1997). Persons with DD
usually have communication difficulties, which makes it difficult
for physicians and other health professionals to obtain health
histories. Other barriers to healthcare access include the transi-
tion from institutional to community living, having too few
primary care providers in the community able to meet their
needs, and the attitudes of family and professional carers toward
DD. Community health services are heavily geared toward
the needs of the general aging population (Krahn et al., 2006;
Reichard, Sacco, & Turnbull, 2004), and not some adults with
DD, who usually experience premature aging and therefore do
not meet the minimum age eligibility criteria required for indi-
viduals who wish to access geriatrics services in the community.
In addition, a need exists for a holistic approach, with a team of
healthcare and social professionals to work together to meet the
specific needs of older adults with DD (McDougall, Wright, &
Rosenbaum, 2010). In multivariate analyses, when we controlled
for the effects of sex, education, living arrangements and family
status, and reported unmet healthcare and social services needs,
older individuals with DD who had fewer physician visits had
increased odds of reporting negative self-rated health. One
might expect that those in poorer health would visit physicians
more often. Unfortunately, we are limited with the cross-
sectional nature of data used to examine the direction of the
observed association. To shed light on this issue, future longitu-
dinal studies are needed.
Our fourth key finding relates to the reasons for the reported
unmet needs. More specifically, we found that of older adults with
DD who reported unmet needs for healthcare and social support
services, an estimated 46% reported “cost of care or service” as a
barrier. This finding is important because it highlights the fact
that the barriers for older population with DD receiving the care
or services needed differ from those reported for the Canadian
population in general. According to the CCHS data, the two most
frequently reported reasons for the reported unmet healthcare
needs among Canadians age 12+ are “long waits” and “unavail-
ability of services” (Sanmartin et al., 2002). Notice that, although
the CCHS asks the respondents about the barriers to receiving
healthcare only, PALS asked respondents about healthcare and
social support services needs.
In Canada, the Canada Health Act ensures free and univer-
sal access to publicly insured healthcare. On the other hand,
Canadian provinces have variable policies regarding their social
support services and coverage. In most provinces, at least two
separate and disconnected ministries have the responsibility
of supporting persons with disabilities in general and those with
DD specifically. The existing disconnection between responsible
departments (e.g., a Department of Health responsible for pro-
vision of healthcare and services and a Department of Family
and Social Services responsible for disability programs and social
support services) is a factor known to contribute to health and
social disparities experienced by persons with disability in general
and those with DD. With the adoption of the normalization phi-
losophy in Canada, as in other developed countries, came the
deinstitutionalization of persons with DD, which led to a shift
from using specialized health services to the use of predominantly
nonspecialized, mainstream health services and community-
based social supports. Mainstream health or social service
delivery models have been criticized for not having the capacity
to meet the health and social support needs of persons with DD
(e.g., Meijer, Carpenter, & Scholte, 2004). Our findings emphasize
the need for additional coverage for health and social services
to support active and healthy aging of persons with DD in the
community.
Fifth, although prior research suggests a significant associa-
tion between reported unmet health and social support services
needs and self-rated health among the general population (e.g.,
Ayanian, Weissman, Schneider, Ginsburg, & Zaslavsk, 2000),
or the population with disabilities (e.g., Allen & Vincent, 1997),
our study using PALS data for older persons with DD did not
confirm that association. We can offer several explanations for
this finding. One is that the self-rated health indicator is usually
used to allow individuals to provide an assessment of their own
overall health status. We know that proxy response was allowed
in PALS 2006 and the overall proxy rate for this survey was
12.1%. However, there was no variable in the PALS master data
file to allow us to determine what proportion of respondents
answered self-rated health question by proxy. In the case of
older persons with DD, given the fact that communication dif-
ficulties are common among this population, we suspect that a
high proportion of responses were provided by proxy, and we
have no information about who the proxy respondents were and
the extent to which they knew the target individuals. Thus, our
results might have been affected by proxy response.
Another is that a self-rated health indicator might not be the
most sensitive health outcome for persons with a DD when exam-
ining the impact of unmet healthcare and social support services
Journal of Policy and Practice in Intellectual Disabilities Volume 9 Number 2 June 2012
S. Shooshtari et al. • Unme t Healthcare Needs in Canada
89
needs. Unmet needs may impact individuals with DD in other
ways that affect their assessment of their own health. We suspect
that in the case of older persons with DD, other measures—for
example, social participation—might in fact be better candidate
outcome measures for assessing the impact of individuals’
reported unmet needs for healthcare and social support services.
Measures of quality of life, which unfortunately the PALS survey
did not include, are other good candidates.
LIMITATIONS
The results of the present study must be considered in light of
several other limitations. First, the PALS 2006 do not provide
detailed information on the level, or etiology of a DD, which
might be important determinants of self-rated health. Second, the
overall response rate to PALS adult survey was 73.9%. Although
we used the weighted data, which are adjusted for nonresponse,
but without detailed information on the level and type of DD, the
full adjustment is impossible. This might have introduced some
bias to our results.
Third, our presented analyses are based on cross-sectional
data, which means that no time lag exists between the measure-
ment of self-reported unmet needs and the study outcome,
that is, self-reported health status. This limitation of our study
emphasizes the importance of collecting high-quality longitudi-
nal data at the national level which could allow us to examine the
short-term and long-term effects of such conditions as reported
unmet needs on overall health status of survey respondents.
COMMENTARY
We need comprehensive longitudinal surveys of persons with
disabilities, including those with DD, to be able to estimate the
population, describe their profile including their level of disabil-
ity and etiology, and gain a better understanding of their living
conditions, employment status, family status, health, and access
to services. Such a longitudinal data source would also allow us to
examine changes in their health, social status, and access to health
and social services over time as these individuals age. Canada is a
leader in well-designed population-based longitudinal studies
of aging. For example, the most comprehensive and continuous
Longitudinal Study of Aging in Manitoba started in 1971 and
ended in 2001. The Canadian Longitudinal Study on Aging,
launched in 2009, is a large, national, long-term study that will
follow approximately 50,000 Canadian men and women between
the ages of 45 and 85 for at least 20 years. This study will collect
biological, medical, psychological, social, and economic data for
the participating individuals over the study period. Unfortu-
nately, none of these surveys collected information that would
allow us to look at population aging with specific types of dis-
ability, including those with DD (Canadian Longitudinal Study
on Aging, 2009). Such a data source is highly needed to gain a
better understanding of health changes and therefore the health
and social services needs of older adults with DD at the popula-
tion level. Detailed information on the level and etiology of DD
will be also needed to be examined in relation to health and health
trajectories.
Overall, we need more sensitive measures of overall health
status and quality of life for research and practice in the field of
DD. Additionally, further research is needed on the policies and
organization of health and social services, along with well-known
social determinants of health and health trajectories, experienced
by persons with DD as they age. Active aging, which is being able
to maintain activity, health, independence and productivity in
older age (World Health Organization, 2001b), is another impor-
tant area for research, policy, and practice.
ACKNOWLEDGMENTS
Shahin Shooshtari was supported by the University of Mani-
toba Centre on Aging Faculty Fellowship (2008–09). The authors
would also like to acknowledge Dr. Ian Clara at the Manitoba
RDC for his valuable input. The research and analyses are based
on the data from Statistics Canada, and the opinions expressed do
not represent the views of Statistics Canada.
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