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Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey

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Title: Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey
Language: English
Authors: Lunsky, Y., Garcin, N., Morin, D., Cobigo, V., Bradley, E.
Source: Journal of Applied Research in Intellectual Disabilities. Sep 2007 20(5):439-447.
Availability: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
Peer Reviewed: Y
Page Count: 9
Publication Date: 2007
Document Type: Journal Articles
Reports - Research
Descriptors: Health Services, Mental Retardation, Mental Health Programs, Mental Health, Foreign Countries, Incidence, National Surveys, Questionnaires, Documentation, Public Policy
Geographic Terms: Canada
DOI: 10.1111/j.1468-3148.2007.00384.x
ISSN: 1360-2322
Abstract: Background: People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods: A 30-item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results: More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion: Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.
Abstractor: As Provided
Entry Date: 2009
Accession Number: EJ835380
Database: ERIC
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  Value: <anid>AN0026293911;e0301sep.07;2019May30.13:03;v2.2.500</anid> <title id="AN0026293911-1">Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey. </title> <p>Background  People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods  A 30‐item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results  More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion  Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.</p> <p>Keywords: Canada; dual diagnosis; intellectual disabilities</p> <p>Intellectual disabilities are conditions originating before the age of 18 years that result in significant limitations in intellectual functioning and conceptual, social and practical adaptive skills ([<reflink idref="bib22" id="ref1">22</reflink>]). Intellectual disabilities affect 1–3% of the population, with 1% being the most precise figure when adaptive behaviour measures are used to define the population ([<reflink idref="bib38" id="ref2">38</reflink>]). Individuals with intellectual disabilities are at higher risk than non‐disabled individuals for developing a psychiatric disorder ([<reflink idref="bib4" id="ref3">4</reflink>]; [<reflink idref="bib20" id="ref4">20</reflink>]). Studies have reported the prevalence of mental health problems in approximately 10–40% of individuals with intellectual disabilities ([<reflink idref="bib31" id="ref5">31</reflink>]; [<reflink idref="bib32" id="ref6">32</reflink>]).</p> <p>Surveys of the mental healthcare of individuals with intellectual disabilities from several parts of the world (UK, Europe, USA, Australia) have highlighted widespread diversity in service provision between regions, particularly when no national policy guidelines exist ([<reflink idref="bib2" id="ref7">2</reflink>]; [<reflink idref="bib7" id="ref8">7</reflink>]; [<reflink idref="bib19" id="ref9">19</reflink>]; [<reflink idref="bib18" id="ref10">18</reflink>]; [<reflink idref="bib21" id="ref11">21</reflink>]; [<reflink idref="bib35" id="ref12">35</reflink>]). The quality of services depends on where a person lives and expertise available, with inequities due in part to financial limitations, the stage a given region is at in terms of deinstitutionalization, and a failure of policy makers in particular regions to recognize the health needs of individuals with intellectual disabilities ([<reflink idref="bib18" id="ref13">18</reflink>]; [<reflink idref="bib35" id="ref14">35</reflink>]). Policy documents such as <emph>the White Paper</emph> in the UK ([<reflink idref="bib14" id="ref15">14</reflink>]) and <emph>Closing the Gap</emph> in the US ([<reflink idref="bib39" id="ref16">39</reflink>]) <emph>the Declaration of Rome 2003</emph> ([<reflink idref="bib34" id="ref17">34</reflink>]) and the <emph>European Manifesto</emph> ([<reflink idref="bib27" id="ref18">27</reflink>]) are playing an important role in ensuring that the mental health needs of individuals with intellectual disabilities get addressed at the national level.</p> <p>There is no comparable Canada‐wide policy for healthcare provision for people with intellectual disabilities, nor are there any recent national guidelines on how to assess and treat their mental health needs. Describing the existing mental health services and perceived service gaps for these individuals across the country is an important first step towards establishing national policy, clinical/service standards and guidelines. Almost 20 years ago, Dr Donald Zarfas, a Canadian psychiatrist, attempted to identify these gaps by surveying government officials and provincial voluntary associations involved in providing mental health services for individuals with intellectual disabilities. Nine provinces reported a lack of resources/expertise; seven provinces reported insufficient community space; six provinces reported jurisdictional problems; and three provinces rated intellectual disabilities as a low priority ([<reflink idref="bib40" id="ref19">40</reflink>]). This study extends the original work of Dr Zarfas.</p> <hd id="AN0026293911-2">An Overview of Intellectual Disability Services in Canada</hd> <p>Canada is a multilingual country with two official languages (English and French). It covers a vast territory that is 40 times the size of the UK, yet is inhabited by a population of approximately 32 million people, which is about half that of the UK. Canada consists of 10 provinces and three territories, and extends for 5000 miles from the US border to the North Arctic, and is approximately 5000 miles from the east coast to west coast. The majority of the population lives within 100 miles of Canada's south border. Social and medical services are centrally located in more densely populated areas. Those living in more remote regions may have to travel several hours to access medical or social services. Ontario has the largest percentage of the population (34%), with most individuals living in the southern part of the province. Quebec, the second most populated province (19%) is predominantly French‐speaking. The three territories, and parts of certain provinces, have a large Native Canadian population (Cree, Ojibway, Inuit) with their own culture, language and unique intellectual disability issues, including particularly high rates of foetal alcohol syndrome ([<reflink idref="bib11" id="ref20">11</reflink>]).</p> <p>It is estimated that there are more than 300 000 individuals with an intellectual disability in Canada ([<reflink idref="bib28" id="ref21">28</reflink>]; [<reflink idref="bib29" id="ref22">29</reflink>]; [<reflink idref="bib9" id="ref23">9</reflink>]). Services for individuals with intellectual disabilities are provincially based rather than federally or nationally determined. A provincial model of services means that how dollars are spent on individuals with intellectual disabilities is determined regionally. There is no national requirement or guideline and there is no national committee, such as the President's Committee on Intellectual Disabilities in the USA, which advises government at the national level on how best to meet the needs of individuals with intellectual disabilities and their families. The 10 provinces and three territories function independently when making decisions in this regard and they do not report to each other on a regular basis. There is no Canadian professional organization on intellectual disabilities and although there are several Canadian universities with special programmes or centres on intellectual disabilities, there is not one designated research/training centre in each province or nationally. Finally, most of the medical schools in Canada do not have special programmes or divisions in intellectual disabilities with two exceptions (Queen's University and University of Western Ontario) and intellectual disability is not a recognized subspecialty in family medicine or psychiatry ([<reflink idref="bib12" id="ref24">12</reflink>]).</p> <p>Most services for individuals with intellectual disabilities are funded by a separate body than the provincial ministry responsible for health services (with the exception of the province of Quebec, where one ministry is responsible for both types of services). The 'dual ministry' model (health services separate from services for people with intellectual disabilities) is particularly problematic with regard to mental health services for those with intellectual disabilities because the two separate authorities share fiscal responsibility ([<reflink idref="bib40" id="ref25">40</reflink>]; [<reflink idref="bib23" id="ref26">23</reflink>]). What this means in practice is that the two authorities debate over who should fund services, and there is no set guideline outlining how the ministries should work together.</p> <p>Canada, as many other countries, has seen a dramatic shift in its model of care for persons with intellectual disabilities in the past 30 years. Prior to the 1970s, intellectual disability was considered to be a medical condition that required constant professional care, much of which occurred in institutional settings. In 1970, 19 089 individuals with intellectual disabilities were living in 41 institutions (not including psychiatric hospitals) for people with intellectual disabilities across Canada ([<reflink idref="bib30" id="ref27">30</reflink>]). The majority of individuals with intellectual disabilities now reside in their local communities. Deinstitutionalization led to the separation of intellectual disability services from provincial authorities responsible for health services. It de‐medicalized intellectual disabilities and put the emphasis on community inclusion. This meant that health services for individuals with intellectual disabilities would be community‐based and unfortunately specialized psychiatric care became less of a priority ([<reflink idref="bib26" id="ref28">26</reflink>]). As institutions closed in Canada, individuals with co‐existing intellectual disabilities and psychiatric disorders were forced to access generic mental health services, without appropriate structures being in place to allow them to do so easily ([<reflink idref="bib40" id="ref29">40</reflink>]). Several experts have identified such an approach as inadequate in other parts of the world (e.g. [<reflink idref="bib6" id="ref30">6</reflink>]; [<reflink idref="bib10" id="ref31">10</reflink>]; [<reflink idref="bib13" id="ref32">13</reflink>]). This is very different from the UK model for example; where within a national framework, specialized mental health teams were developed at the local level ([<reflink idref="bib18" id="ref33">18</reflink>]) to support adults with intellectual disabilities once deinstitutionalization occurred.</p> <p>The generic healthcare model, combined with no national guidelines and provincially determined services shared by two distinct ministries has translated into poorly coordinated care for individuals with intellectual disabilities and mental health needs in Canada. There is no nationally mandated structure for how mental health needs of individuals with intellectual disabilities should be addressed and there is no existing document that outlines current services and service gaps across the country with the exception of [<reflink idref="bib40" id="ref34">40</reflink>] study. The present study is a follow‐up of Zarfas's initial work, offering multiple perspectives from each province (including Quebec which was excluded by [<reflink idref="bib40" id="ref35">40</reflink>]), and obtaining greater detail on current services and gaps than Zarfas's original study. Thus, the purpose of this study was to describe mental health services and gaps in services for people with intellectual disabilities across Canada, according to perspectives of clinicians, researchers, policy makers and caregivers.</p> <hd id="AN0026293911-3">Materials and Methods</hd> <p>A 30‐item questionnaire was developed that focused on mental health services and staffing levels available to children, adolescents and adults with intellectual disabilities. Intellectual disability was defined as referring to individuals who have significant limitations in cognitive and adaptive functioning prior to age 18 years (mental retardation in DSM‐IV‐TR). Open‐ended and multiple‐choice questions were included in the questionnaire in order to accurately describe services available in the person's region and identify perceived unmet needs. The questionnaire was divided into seven sections: (<reflink idref="bib1" id="ref36">1</reflink>) where people go for mental health services; (<reflink idref="bib2" id="ref37">2</reflink>) availability of mental health services by age level and level of intellectual disabilities; (<reflink idref="bib3" id="ref38">3</reflink>) generic mental health services; (<reflink idref="bib4" id="ref39">4</reflink>) specialized mental health services for intellectual disabilities by age group; (<reflink idref="bib5" id="ref40">5</reflink>) average length of wait for services; (<reflink idref="bib6" id="ref41">6</reflink>) training priorities; and (<reflink idref="bib7" id="ref42">7</reflink>) current challenges/service gaps. Items were selected based on input from researchers and clinicians working in the dual diagnosis field involved in the HEIDI1 research group. Questions on the questionnaire were kept quite general in nature because of the varying service delivery systems between provinces. These questionnaires were supplemented by interviews with at least one key informant from each province/territory along with a review of relevant policy and research documents developed by the various provinces on dual diagnosis services.</p> <p>Questionnaire and mailing followed pertinent suggestions from the Total Design Method ([<reflink idref="bib16" id="ref43">16</reflink>]). The questionnaire was accompanied by a cover letter explaining the nature of the study and providing a definition of intellectual disability, with a prestamped, preaddressed envelope and fax number and email address for completed forms. One hundred and ninety‐nine (<reflink idref="bib199" id="ref44">199</reflink>) questionnaires were sent out by mail to potential informants from the 10 Canadian provinces and three territories. Key informants were identified from four sources: a database of all researchers in Canada who had published in the area of intellectual disability (this could include basic science researchers who would not have completed the questionnaire), the list of all Canadian members of the National Association on Dual Diagnosis, the list of attendees at a Canadian conference on education (Catalysts for University Education in Developmental Disabilities, held in Kingston Ontario in November 2000), and a web‐based search of provincial websites on intellectual disability services. Key informants included clinical specialists in the area of intellectual disability and mental health, intellectual disability researchers, family/advocates, intellectual disability service providers, and policy makers. Three to four months later, a second copy of the questionnaire was sent by email to the 114 individuals who had not responded to the first questionnaire along with an additional 129 questionnaires sent to representatives from each provincial community living association and other recommended contacts from the returned questionnaires.</p> <p>A total of 116 questionnaires (35%) were returned out of 328, with relatively equal geographic representation from across the country (see Table 1).2 This response rate falls within the expected 34–52% rate anticipated by the [<reflink idref="bib16" id="ref45">16</reflink>] method. Of the returned questionnaires, 52% came from individuals working in the intellectual disability services sector, 36% from individuals working in the health sector, 11% from clinicians working in private settings, 13% from University‐affiliated clinicians and researchers, and 9% from policy makers (respondents could place themselves in more than one category.) Eleven per cent of respondents considered themselves to be family or caregivers of individuals with intellectual disabilities.</p> <p>1  Geographical representation</p> <p> <ephtml> <table><thead valign="bottom"><tr><th> Province/territory</th><th>Number of questionnaires received</th><th>Population (Statistics Canada, 2005)</th><th>Percentage of Canadian population</th><th>Percentages of questionnaires received</th></tr></thead><tbody valign="top"><tr><td>Alberta</td><td char=""> 10</td><td char="">3 223 415</td><td char="">10</td><td char="">8.6</td></tr><tr><td>British Columbia</td><td char=""> 13</td><td char="">4 219 968</td><td char="">13.1</td><td char="">11.2</td></tr><tr><td>Manitoba</td><td char="">  9</td><td char="">1 174 645</td><td char="">3.6</td><td char="">7.7</td></tr><tr><td>New Brunswick</td><td char="">  3</td><td char="">751 257</td><td char="">2.3</td><td char="">2.6</td></tr><tr><td>Newfoundland and Labrador</td><td char="">  8</td><td char="">516 986</td><td char="">1.6</td><td char="">6.9</td></tr><tr><td>Nova Scotia</td><td char="">  1</td><td char="">937 538</td><td char="">3</td><td char="">0.9</td></tr><tr><td>Northwest territories</td><td char="">  1</td><td char="">42 944</td><td char="">0.1</td><td char="">0.9</td></tr><tr><td>Nunavut</td><td char="">  1</td><td char="">29 683</td><td char="">0.09%</td><td char="">0.9</td></tr><tr><td>Ontario</td><td char=""> 39</td><td char="">12 449 502</td><td char="">39</td><td char="">33.6</td></tr><tr><td>Prince Edward Island</td><td char="">  1</td><td char="">137 734</td><td char="">0.4</td><td char="">0.9</td></tr><tr><td>Quebec</td><td char=""> 20</td><td char="">7 568 640</td><td char="">23.6</td><td char="">17.2</td></tr><tr><td>Saskatchewan</td><td char="">  3</td><td char="">995 280</td><td char="">3.1</td><td char="">2.6</td></tr><tr><td>Yukon</td><td char="">  0</td><td char="">31 227</td><td char="">0.1</td><td char="">0</td></tr><tr><td>Anonymous</td><td char="">  7</td><td char=""> </td><td /><td /></tr><tr><td>Canada</td><td char="">116</td><td char="">32 078 819</td><td /><td /></tr></tbody></table> </ephtml> </p> <hd id="AN0026293911-4">Results</hd> <p>Chi‐squares were computed to compare response patterns of respondents from the more populated provinces (British Columbia, Ontario, Alberta and Quebec: population > 3 million) and the less populated provinces and territories (population < 1.5 million) and no differences were found so findings reported here are for the country as a whole. As is apparent from Table 2, there is no one place where an individual with intellectual disabilities goes to receive mental health services in Canada. Some regions have existing specialized programmes in the community (e.g. British Columbia's regional mental health teams) and other regions have dual diagnosis units/programmes through their psychiatric hospitals (e.g. Prince Edward Island, Nova Scotia, Ontario). Intellectual disability service agencies were identified by 75% of respondents as being the most common place 'to turn to for help when someone with intellectual disabilities has a mental health or behavioural issue', even though these agencies do not necessarily have expertise in mental health issues and many of these agencies do not have psychiatrists on staff. The second most common resource listed was the family physician (68%) who, in Canada, receives no formal training in mental health and intellectual disability ([<reflink idref="bib12" id="ref46">12</reflink>]). Mental health agencies (hospitals, community mental health centres), in contrast, were not identified as being accessed as frequently (31–55%).</p> <p>2  Where do individuals turn to for help in time of need? (n = 116)</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Agency or service</th><th>Percent</th></tr></thead><tbody valign="top"><tr><td>Developmental services agencies<sup>1</sup></td><td>75</td></tr><tr><td>Family physician</td><td>68</td></tr><tr><td>Specialized mental health services</td><td>55</td></tr><tr><td>Local hospital</td><td>50</td></tr><tr><td>Psychiatric hospital</td><td>48</td></tr><tr><td>Community mental health centre</td><td>45</td></tr><tr><td>Government ministry social worker</td><td>39</td></tr><tr><td>Mental health services provider</td><td>31</td></tr><tr><td>School</td><td>29</td></tr><tr><td>Other</td><td>15</td></tr></tbody></table> </ephtml> </p> <p>1 <sups>1</sups>Developmental services is Canadian term for intellectual disability services.</p> <p>Sixty‐seven per cent of respondents reported that if someone with intellectual disabilities were to have a mental health crisis, they would be able to use specialized mental health services in their region. Sixty‐seven per cent of respondents reported that generic service providers would accept clients with intellectual disabilities if specialized services were unavailable. However, the majority of respondents rated generic mental health service providers as poorly prepared to meet the needs of adults (63%), adolescents (62%), and children (56%) with intellectual disabilities and mental health concerns. This is not surprising given that there is no coverage of dual diagnosis or even intellectual disabilities in most professional curricula in Canada ([<reflink idref="bib23" id="ref47">23</reflink>]; [<reflink idref="bib26" id="ref48">26</reflink>]; [<reflink idref="bib12" id="ref49">12</reflink>]).</p> <p>As indicated in Table 3, most respondents reported that some form of assessment/diagnostic (70%) and community mental health teams (63%) are available to adults with intellectual disabilities, but fewer respondents rated these services as available to children (45% and 29% respectively) and adolescents (51% and 44% respectively). Medication monitoring was rated as available for adults by 63% of respondents. In contrast, only 27% of respondents reported that physicians were available to monitor medications given to children (38% to adolescents). Sixty‐four per cent of respondents indicated that behaviour therapy services were available and 56% of respondents indicated that counselling/therapy services were available for adults. Similar services for children and adolescents were endorsed by respondents less frequently. In terms of available respite options, approximately 60% of respondents stated that families of adults had access to some type of respite service in their area. Such services are not exclusive for individuals with mental health issues but are for the broader group with intellectual disabilities. Services with the lowest ratings across the country were specialized inpatient hospital services (17–44%) and emergency room expertise (12–15%). In terms of availability of particular discipline‐specific consultations, speech and language and occupational therapy consultations were rated as available by 49% and 51% of respondents, respectively, compared with 71% for psychology and 81% for psychiatric consultations.</p> <p>3  Percentage of respondents who indicated specific specialized mental health services as being available for children, adolescents and adults with intellectual disabilities (n = 116)</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Specialized service</th><th>Child (%)</th><th>Adolescent (%)</th><th>Adult (%)</th></tr></thead><tbody valign="top"><tr><td>Crisis services</td><td>35</td><td>41</td><td>59</td></tr><tr><td>Assessment/diagnostic team</td><td>45</td><td>51</td><td>70</td></tr><tr><td>Community mental health team</td><td>29</td><td>44</td><td>63</td></tr><tr><td>Consultation team</td><td>28</td><td>35</td><td>48</td></tr><tr><td>Medication monitoring</td><td>27</td><td>38</td><td>63</td></tr><tr><td>Behaviour therapy</td><td>44</td><td>49</td><td>64</td></tr><tr><td>Counselling therapy</td><td>31</td><td>38</td><td>56</td></tr><tr><td>Specialized inpatient unit</td><td>17</td><td>24</td><td>44</td></tr><tr><td>Emergency room expertise</td><td>12</td><td>11</td><td>15</td></tr><tr><td>Respite care</td><td>53</td><td>53</td><td>60</td></tr></tbody></table> </ephtml> </p> <p>Thirty‐one per cent of respondents listed waiting times between 1 and 3 months for clinical services for individuals with a dual diagnosis, and 33% of respondents reported waiting times between 4 and 8 months for services. Twenty‐six per cent of respondents gave waitlist times of 8–16 months, and 9% reported that individuals have to wait longer than 16 months for services.</p> <p>Key informants also responded to two open‐ended questions: What are the training priorities in your area? and What are the biggest challenges/gaps faced in your community? Of the 67 responses we received regarding training priorities, 88% identified training for professionals and 13% identified training for families. Some responses (27%) referred to professionals generally. Specific professional groups identified as in need of training were hospital staff (22%), particularly in psychiatry units and emergency rooms, and family doctors (12%). With regard to the type of training required, the most common response category was training on intervention (typically with a behavioural component; 25%), followed by general overview/introductory training (19%), and training on autistic spectrum disorders (9%). Key respondents from the northern territories and parts of the other provinces also identified assessment and treatment of foetal alcohol spectrum disorders as a priority.</p> <p>We categorized the 82 responses received on current challenges into three main categories: lack of resources/services (84%), shortage of expertise/human resources (56%), and lack of funding (29%). Some basic services were also identified as barriers, such as lack of residential settings (16%). Inadequate emergency and crisis services specifically were identified by 16% of individuals and the shortage of psychiatrists with expertise in intellectual disability was identified by 26% of respondents. Other barriers included poor inter‐ministerial cooperation; a lack of cohesion among professionals; and crises related to life transitions (e.g. parent dying, young adult leaving school system). Several respondents from rural settings commented on the sense of isolation experienced because tertiary care providers were often too far away to rapidly respond to client needs.</p> <hd id="AN0026293911-5">Discussion</hd> <p>This study is a follow‐up to the first paper on mental health services for individuals with intellectual disabilities in Canada ([<reflink idref="bib40" id="ref50">40</reflink>]), based on a larger sample that includes clinicians and the Province of Quebec, with greater detail on existing services and service gaps than the original study. Findings based on returned questionnaires suggest that Canada has some specialized services (e.g. respite, assessment, behaviour therapy) for individuals with intellectual disabilities and mental health concerns but there are an insufficient number of specialized services and some other services are still lacking in many regions (e.g. specialized inpatient treatment and emergency room supports). Even for services that are more readily available, clients typically have to wait more than 3 months. This would suggest that the services that do exist cannot meet the demands of the entire population in need of them.</p> <p>It appears that, although not yet mandated at the provincial or national level, experts in some provinces have developed pockets of more specialized services, typically driven by individuals linked with urban University‐based research centres. In certain provinces, British Columbia for example, four specialist regional interdisciplinary mental health teams for individuals with intellectual disabilities have recently been established. Similar teams exist in other provinces as well but without a provincial structure so that only some parts of the province have access to the service. In Ontario, the shortage of specialized outpatient services has been one explanation offered for the significant percentage of individuals with a dual diagnosis living in the province's psychiatric hospitals (19%), of which a significant percentage (37%) have been for more than 5 years ([<reflink idref="bib24" id="ref51">24</reflink>]). Some Ontario respondents in the current study suggested that in the absence of appropriate community services, individuals with intellectual disabilities and complex mental health needs can get inappropriately placed long term in other institutional settings, such as hospitals. Some regions of the country have developed expertise in the area of foetal alcohol syndrome because of its extremely high prevalence in some communities (e.g. 55–101 per 1000 in First Nations community in Manitoba, [<reflink idref="bib36" id="ref52">36</reflink>]; 46 per 1000 in the Yukon and 25 per 1000 in Northern British Columbia, [<reflink idref="bib1" id="ref53">1</reflink>]).</p> <p>Survey data suggest that specialized mental health services available to young people with intellectual disabilities may be even more limited than services available to adults, as has been reported elsewhere ([<reflink idref="bib23" id="ref54">23</reflink>]; [<reflink idref="bib25" id="ref55">25</reflink>]; [<reflink idref="bib33" id="ref56">33</reflink>]). This is particularly concerning given the high prevalence of psychopathology in children and adolescents with intellectual disabilities (e.g. [<reflink idref="bib17" id="ref57">17</reflink>]). A recent epidemiological study in one Canadian province documented serious psychiatric disorder in one of five adolescents with intellectual disabilities, which increased to one in two of those with coexisting intellectual disability and autism ([<reflink idref="bib8" id="ref58">8</reflink>]). More studies of specialized services for young people in Canada are required.</p> <p>According to our findings, not only is greater accessibility to services needed, but also, specific training of health professionals in the field of intellectual disability is important. It is often the case that health professionals and service providers working with people with intellectual disability do not understand the unique health needs of their clients, and they may not seek out appropriate services because of their knowledge gaps ([<reflink idref="bib39" id="ref59">39</reflink>]). Moreover, very few front‐line professionals receive specialized training in the assessment and treatment of individuals with intellectual disability ([<reflink idref="bib3" id="ref60">3</reflink>]). [<reflink idref="bib21" id="ref61">21</reflink>] underline that more than three‐quarters of their representative sample of general practitioners in Australia consider themselves to be ill‐prepared to provide treatment to individuals with intellectual disabilities. Given the role that general practitioners appear to play in Canada, particularly for adults with intellectual disabilities, a comparable survey of general practitioners' knowledge and comfort with patients with intellectual disabilities in Canada should be completed. If indeed it is found that general practitioners in Canada feel ill equipped, this may provide a stronger basis for increasing their training in intellectual disability.</p> <p>The experience from Canada reported here suggests that a generic services model without minimal standardized training is not enough. The Canadian situation is in sharp contrast to the UK situation. There, over the past several decades, networks of locally based community teams for persons with intellectual disability have been providing a range of services including physical and mental health care ([<reflink idref="bib5" id="ref62">5</reflink>]) and the focus now is towards integrating this expertise into more mainstream services ([<reflink idref="bib15" id="ref63">15</reflink>]). When comparing services and services structures in the two places, one must keep in mind that because the UK is more densely populated, it is more feasible to set up community teams in each locale than in Canada where the geographic region that any given team serves can be very large. While the UK and Canada have approached this issue from opposite directions and have different structures and geographical considerations, there appears now to be a shared experience, namely that generic services, in the absence of appropriate cross sector training (persons in mental health trained in intellectual disabilities and vice versa) and some specialist provision, are unlikely to adequately meet the mental health needs of persons with intellectual disabilities.</p> <p>There are several limitations to this study, relevant when interpreting its findings. First, despite two attempts to solicit questionnaires, the overall response rate (35%) is acceptable but low, and it is possible that the opinions of those who did not complete the survey differ from those of individuals who were motivated to complete it. The few people who we did reach on the telephone from regions like the Yukon Territory or Nunavut, suggested that the poor response rate was a reflection of the lack of expertise/absence of specialized programmes in these locales. Further research is required to determine whether views reported here are representative of views across Canada. A second limitation of this study is that it reports on the availability of services as perceived by particular informants across the country but it does not speak to the quality of such services. For example, this study suggests that assessment, behaviour therapy and respite services do exist across Canada for those with intellectual disabilities and mental health issues. It does not however, indicate whether these services are appropriate or adequate. A parallel project investigating satisfaction with specialized services across the country would be helpful in this regard.</p> <p>The completion of an environmental scan of mental health services for intellectual disabilities across Canada is an important first step in our country in documenting what services and barriers to services exist. However, as our study title indicates, findings reported herein are preliminary and need to be validated by further research. Our next step is to develop a consensus project by province where service users, service providers and government work together to document mental health/intellectual disability services and barriers on a province‐wide level. Such an analysis would also allow us to get more specific population‐based information on the number of professionals currently available to provide various services in each region. Such a project could also highlight best practices and/or model programmes from across the country. From there we hope to develop a national group with representation from each province that can work together to create a policy document on mental health services for those with intellectual disability living in Canada.</p> <hd id="AN0026293911-6">Acknowledgements</hd> <p>This study was supported by a grant to the authors from the Canadian Institutes of Health Research, Institute of Gender and Health. The authors wish to thank the participants of the study, the Canadian Association for Community Living, Jennifer Puddicombe for her editorial comments, as well as Dr Jeanette Holden, principal investigator, and fellow investigators from the Healthcare Equity for Intellectually Disabled Individuals (HEIDI) program in Canada. For more information about our research access <ulink href="http://www.HEIDIResearch.ca">http://www.HEIDIResearch.ca</ulink>.</p> <hd id="AN0026293911-7">Correspondence</hd> <p>Any correspondence should be directed to Yona Lunsky PhD, Centre for Addiction and Mental Health, 1001 Queen Street West, Toronto, Ontario, Canada M6 J 1H4 (e‐mail: yona_lunsky@camh.net).</p> <ref id="AN0026293911-8"> <title> Footnotes </title> <blist> <bibl id="bib1" idref="ref36" type="bt">1</bibl> <bibtext> Healthcare Equity for Intellectually Disabled Individuals, a Canadian CIHR‐funded research team.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref7" type="bt">2</bibl> <bibtext> The Yukon was the only territory not to return a questionnaire but a key informant interview was conducted over the phone with a community agency there that provides services to people with ID in that region</bibtext> </blist> </ref> <ref id="AN0026293911-9"> <title> References </title> <blist> <bibtext> Asante K. O. & Nelms‐Matzke J. (1985) Report on the Survey of Children with Chronic Handicaps and Fetal Alcohol Syndrome in the Yukon and Northwest British Columbia. Council for Yukon Indians, Whitehorse, Canada.</bibtext> </blist> <blist> <bibtext> Bailey N. & Cooper S. A. (1997) The current provision of specialist health services to people with learning disabilities in England and Wales. Journal of Intellectual Disability Research 41, 52 – 59.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref38" type="bt">3</bibl> <bibtext> Birenbaum A. (1995) Managed care and the future of primary care for adults with mental retardation. Mental Retardation 33, 334 – 337.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref3" type="bt">4</bibl> <bibtext> Borthwick‐Duffy S. A. (1994) Epidemiology and prevalence of psychopathology in persons with mental retardation. 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(2006) Episodic Psychiatric disorders in teenagers with learning disabilities with and without autism. British Journal of Psychiatry 189, 361 – 366.</bibtext> </blist> <blist> <bibl id="bib9" idref="ref23" type="bt">9</bibl> <bibtext> Bradley E. A., Thompson A. & Bryson S. E. (2002) Mental retardation in teenagers: prevalence data from the Niagara region, Ontario. Canadian Journal of Psychiatry 47, 427 – 434.</bibtext> </blist> <blist> <bibtext> Chaplin R. (2004) General psychiatric services for adults with intellectual disability and mental illness: a review. Journal of Intellectual Disability Research 48, 1 – 8.</bibtext> </blist> <blist> <bibtext> Chudley A. E., Conry J., Cook J. L., Loock C., Rosales T. & LeBlanc N. (2005) Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Canadian Medical Association Journal 172 5 (suppl), s1 – s21.</bibtext> </blist> <blist> <bibtext> Costello H., Holt G., Cain N., Bradley E., Torr J., Davis R., Edwards N., Lennox N. & Weber G. (2007) Professional training for those working with people with intellectual disabilities and mental health problems. In: Psychiatric and Behavioural Disorders in Intellectual and Developmental Disabilities (Eds N. Bouras & G. Holt). Cambridge University Press, Cambridge, UK.</bibtext> </blist> <blist> <bibtext> Day K. A. (1993) Mental health services for people with mental retardation: a framework for the future. Journal of Intellectual Disability Research 37 (Suppl 1), 7 – 16.</bibtext> </blist> <blist> <bibtext> Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. A White Paper.. Her Majesty's Stationary Office, London, UK. Available at http://www.archive.official‐documents.co.uk/document/cm50/5086/5086.htm ; last accessed 1 January 2004.</bibtext> </blist> <blist> <bibtext> Department of Health (2004) Green Light for Mental Health: How Good are Your Mental Health Services for People with Learning Disabilities? A Service Improvement Toolkit. <ulink href="http://www.valuingpeople.gov.uk/documents/MentalHealthGLGuide.pdf">http://www.valuingpeople.gov.uk/documents/MentalHealthGLGuide.pdf</ulink>.</bibtext> </blist> <blist> <bibtext> Dillman D. (1978) Mail and Telephone Surveys: The Total Design Method. Wiley, New York.</bibtext> </blist> <blist> <bibtext> Einfeld S. L. & Tonge B. J. (1996) Population prevalence of psychopathology in children and adolescents with intellectual disability: II epidemiological findings. Journal of Intellectual Disability Research 40, 99 – 109.</bibtext> </blist> <blist> <bibtext> Holt G., Costello H., Bouras N., Diareme S., Hillery H., Moss S., Salvador L., Tsiantis J., Weber G & Dimitrakaki C. (2000) BIOMED‐MEROPE Project: service provision for adults with mental retardation: a European comparison. Journal Intellectual Disability Research 44, pp – 685.</bibtext> </blist> <blist> <bibtext> Jacobson J. W. (1999) Dual diagnosis services: history, progress and perspectives. In: Psychiatric and Behavioural Disorders in Developmental Disabilities and Mental Retardation (Ed Nick Bouras), pp. 329 – 358. Cambridge University Press, Cambridge, UK.</bibtext> </blist> <blist> <bibtext> L'Abbé Y. & Morin D. (2001) Les comportements agressifs chez les personnes présentant un retard mental: compréhension et intervention. (2 e éd.). Éditions Behaviora, Eastman, Québec.</bibtext> </blist> <blist> <bibtext> Lennox N. G., Diggens J. & Ugoni A. (2000) Health care for people with an intellectual disability: general practitioners' attitudes, and provision of care. Journal of Intellectual and Developmental Disability 25, 127 – 133.</bibtext> </blist> <blist> <bibtext> Luckasson R., Borthwick‐Duffy S., Buntix W. G. E., Coulter D. L., Craig E. M., Reeve A., Schalock R. L., Snell M. E., Spitalnik D. M., Spreat S. & Tassé M. J. (2002) Mental Retardation: Definition, Classification, and Systems of Supports 10th edn. American Association on Mental Retardation, Washington, D.C.</bibtext> </blist> <blist> <bibtext> Lunsky Y. & Bradley E. (2001) Developmental disability training in Canadian psychiatry residency programs. Canadian Journal of Psychiatry 46, 138 – 146.</bibtext> </blist> <blist> <bibtext> Lunsky Y., Bradley E., Durbin J., Koegl C., Canrinus M. & Goering P. (2006) The clinical profile and service needs of hospitalized adults with mental retardation and a psychiatric diagnosis. Psychiatric Services 57, 77 – 83.</bibtext> </blist> <blist> <bibtext> McCarthy J. & Boyd J. (2002) Mental health services and young people with intellectual disability: is it time to do better?. Journal of Intellectual Disability Research 46, 250 – 256.</bibtext> </blist> <blist> <bibtext> McCreary B. (2002) Developmental Disabilities: Still the Cinderella of Canadian Psychiatry. Symposium Conducted at the Meeting of the State of the HART: Habilitative Achievements in Research in Developmental Disabilities, Vancouver, British Columbia.</bibtext> </blist> <blist> <bibtext> Meijer M. M., Carpenter S. & Scholte F. A. (2004) European manifesto on basic standards of health care for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 1, 10 – 15.</bibtext> </blist> <blist> <bibtext> Ministry of Health Welfare Canada. (1988) The Epidemiology of Mental Retardation. Ministry of Health and Welfare Canada, Ottawa, Ontario.</bibtext> </blist> <blist> <bibtext> Ouellette‐Kuntz H. & Paquette D. (2001) The prevalence of developmental disabilities in Lanark County, Ontario. Journal on Developmental Disabilities 8, 1 – 16.</bibtext> </blist> <blist> <bibtext> Radford J. P. & Park D. C. (2003) Historical overview of developmental disabilities in Ontario. In: Developmental Disabilities in Ontario (Eds I. Brown & M. Percy), pp. 3 – 18. Ontario Association on Developmental Disabilities, Toronto, Ontario.</bibtext> </blist> <blist> <bibtext> Reiss S (1990) Prevalence of dual diagnosis in community‐based day programs in the Chicago metropolitan area. American Journal on Mental Retardation 94, 578 – 585.</bibtext> </blist> <blist> <bibtext> Rojahn J. & Tassé M. J. (1996) Psychopathology in mental retardation. In: Manual of Diagnosis and Professional Practice in Mental Retardation (Eds J. W. Jacobson & J. A. Mulick), pp. 147 – 156. American Psychological Association, Washington, D.C.</bibtext> </blist> <blist> <bibtext> Scior K. & Grierson K. (2004) Service provision for young people with intellectual disabilities and additional mental health needs: service providers' perspectives. Journal of Applied Research in Intellectual Disabilities 17, 173 – 179.</bibtext> </blist> <blist> <bibtext> Seidel M. (2004) The declaration of Rome 2003 – with regard to the promotion of interest and services for people with intellectual disabilities with mental health needs. Journal of Policy and Practice in Intellectual Disabilities 1, 103 – 104.</bibtext> </blist> <blist> <bibtext> Smiley E., Cooper S. A., Miller S. M., Robertson P. & Simpson N. (2002) Specialist health services for people with intellectual disability in Scotland. Journal of Intellectual Disability Research 46, 585 – 593.</bibtext> </blist> <blist> <bibtext> Square D. (1997) Foetal alcohol syndrome epidemic on Manitoba reserve. Canadian Medical Association Journal 157, 59 – 60.</bibtext> </blist> <blist> <bibtext> Statistics Canada, CANSIM (2005) Estimates of population, by age group and sex, Canada, provinces and territories (Table 051‐0001). Statistics Canada, Ottawa.</bibtext> </blist> <blist> <bibtext> Tassé M. J. & Morin D. (2003) La déficience intellectuelle. Gaëtan Morin éditeur, Boucherville, Québec.</bibtext> </blist> <blist> <bibtext> U.S. Department of Health and Human Services (2002) Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation: Report of the Surgeon General's Conference on Health Disparities and Mental Retardation. Department of Health and Human Services, Public Health Service, Office of the Surgeon General, Rockville, MD.</bibtext> </blist> <blist> <bibtext> Zarfas D. E. (1988) Mental health systems for people with mental retardation: a Canadian perspective. Australia and New Zealand Journal of Developmental Disabilities 14, 3 – 7.</bibtext> </blist> </ref> <aug> <p>By Y. Lunsky; N. Garcin; D. Morin; V. Cobigo and E. Bradley</p> <p>Reported by Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib22" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib38" firstref="ref2"></nolink> <nolink nlid="nl3" bibid="bib20" firstref="ref4"></nolink> <nolink nlid="nl4" bibid="bib31" firstref="ref5"></nolink> <nolink nlid="nl5" bibid="bib32" firstref="ref6"></nolink> <nolink nlid="nl6" bibid="bib19" firstref="ref9"></nolink> <nolink nlid="nl7" bibid="bib18" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib21" firstref="ref11"></nolink> <nolink nlid="nl9" bibid="bib35" firstref="ref12"></nolink> <nolink nlid="nl10" bibid="bib14" firstref="ref15"></nolink> <nolink nlid="nl11" bibid="bib39" firstref="ref16"></nolink> <nolink nlid="nl12" bibid="bib34" firstref="ref17"></nolink> <nolink nlid="nl13" bibid="bib27" firstref="ref18"></nolink> <nolink nlid="nl14" bibid="bib40" firstref="ref19"></nolink> <nolink nlid="nl15" bibid="bib11" firstref="ref20"></nolink> <nolink nlid="nl16" bibid="bib28" firstref="ref21"></nolink> <nolink nlid="nl17" bibid="bib29" firstref="ref22"></nolink> <nolink nlid="nl18" bibid="bib12" firstref="ref24"></nolink> <nolink nlid="nl19" bibid="bib23" firstref="ref26"></nolink> <nolink nlid="nl20" bibid="bib30" firstref="ref27"></nolink> <nolink nlid="nl21" bibid="bib26" firstref="ref28"></nolink> <nolink nlid="nl22" bibid="bib10" firstref="ref31"></nolink> <nolink nlid="nl23" bibid="bib13" firstref="ref32"></nolink> <nolink nlid="nl24" bibid="bib16" firstref="ref43"></nolink> <nolink nlid="nl25" bibid="bib199" firstref="ref44"></nolink> <nolink nlid="nl26" bibid="bib24" firstref="ref51"></nolink> <nolink nlid="nl27" bibid="bib36" firstref="ref52"></nolink> <nolink nlid="nl28" bibid="bib25" firstref="ref55"></nolink> <nolink nlid="nl29" bibid="bib33" firstref="ref56"></nolink> <nolink nlid="nl30" bibid="bib17" firstref="ref57"></nolink> <nolink nlid="nl31" bibid="bib15" firstref="ref63"></nolink>
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  Data: Mental Health Services for Individuals with Intellectual Disabilities in Canada: Findings from a National Survey
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  Data: <searchLink fieldCode="AR" term="%22Lunsky%2C+Y%2E%22">Lunsky, Y.</searchLink><br /><searchLink fieldCode="AR" term="%22Garcin%2C+N%2E%22">Garcin, N.</searchLink><br /><searchLink fieldCode="AR" term="%22Morin%2C+D%2E%22">Morin, D.</searchLink><br /><searchLink fieldCode="AR" term="%22Cobigo%2C+V%2E%22">Cobigo, V.</searchLink><br /><searchLink fieldCode="AR" term="%22Bradley%2C+E%2E%22">Bradley, E.</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Sep 2007 20(5):439-447.
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  Data: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
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  Data: <searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health+Programs%22">Mental Health Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Incidence%22">Incidence</searchLink><br /><searchLink fieldCode="DE" term="%22National+Surveys%22">National Surveys</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Documentation%22">Documentation</searchLink><br /><searchLink fieldCode="DE" term="%22Public+Policy%22">Public Policy</searchLink>
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  Data: 10.1111/j.1468-3148.2007.00384.x
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  Data: 1360-2322
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  Data: Background: People with intellectual disabilities are known to have a high prevalence of mental health problems but few studies have considered how such mental health problems are addressed in Canada. The purpose of the present study was to document both the range of mental health services available to individuals with intellectual disabilities across Canada and the perceived service gaps. Material and Methods: A 30-item questionnaire was developed that included questions on mental healthcare services for children, adolescents and adults with intellectual disabilities. This survey was sent to key informants in the 10 Canadian provinces and three territories. Results: More than half of the respondents reported that generic mental health providers were poorly equipped to meet the needs of individuals with intellectual disabilities and mental health issues. Certain specialized services (inpatient treatment, emergency room expertise) were reported to exist by less than half of the respondents. Waitlists for specialized services were typically 4 months or longer. Respondents thought that training for staff and professionals was very important. Conclusion: Some specialized services for individuals with intellectual disabilities and mental health issues were reported to exist in Canada but the need for more specialized services and further training was identified. Documentation of these service gaps should lead to further efforts in Canada for the improvement in services and developing policy.
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