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Salutary Lessons from the Delivery of Mental Health Services to People with Intellectual Disability -- A Historical Perspective from Intellectual Disability Mental Health Experts in New South Wales, Australia

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Title: Salutary Lessons from the Delivery of Mental Health Services to People with Intellectual Disability -- A Historical Perspective from Intellectual Disability Mental Health Experts in New South Wales, Australia
Language: English
Authors: Weise, Janelle (ORCID 0000-0003-0783-5898), Mohan, Adith, Walsh, Jessica, Trollor, Julian N. (ORCID 0000-0002-7685-2977)
Source: Journal of Mental Health Research in Intellectual Disabilities. 2021 14(1):70-88.
Availability: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Peer Reviewed: Y
Page Count: 19
Publication Date: 2021
Document Type: Journal Articles
Reports - Research
Descriptors: Mental Health Programs, Mental Health Workers, Expertise, Intellectual Disability, Mental Disorders, Multiple Disabilities, Barriers, Access to Health Care, Health Services, Normalization (Disabilities), Delivery Systems, History, Governance, Policy Formation, Financial Support, Advocacy, Capacity Building, Clinical Diagnosis, Research Needs, Foreign Countries
Geographic Terms: Australia
DOI: 10.1080/19315864.2020.1856243
ISSN: 1931-5864
Abstract: Introduction: People with intellectual disability (ID) face barriers to accessing mental healthcare. Individuals who have had significant experience in intellectual disability mental health (IDMH) can provide insights into strategies to overcome these barriers. Methods: This historical investigation applied an interpretive descriptive approach using semi-structured interviews with fourteen IDMH experts. Thematic analysis was undertaken to explore the delivery of mental health services to people with ID since the 1960s. These themes were then analyzed to identify key lessons about delivering quality mental healthcare. Results: Key lessons suggest the need for: specialized IDMH services, clear policy and governance, including people with ID in the design and delivery of services, holistic and collaborative services, an equipped workforce, quality assessment and treatment, and ongoing research. Conclusions: A historical review of mental health services for people with the ID provided valuable insights into strategies that could be implemented to enhance mental healthcare for this important group.
Abstractor: As Provided
Entry Date: 2021
Accession Number: EJ1283424
Database: ERIC
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  Value: <anid>AN0148210040;[5ew6]01jan.21;2021Jan22.02:45;v2.2.500</anid> <title id="AN0148210040-1">Salutary Lessons from the Delivery of Mental Health Services to People with Intellectual Disability – A Historical Perspective from Intellectual Disability Mental Health Experts in New South Wales, Australia </title> <p>Introduction: People with intellectual disability (ID) face barriers to accessing mental healthcare. Individuals who have had significant experience in intellectual disability mental health (IDMH) can provide insights into strategies to overcome these barriers. Methods: This historical investigation applied an interpretive descriptive approach using semi-structured interviews with fourteen IDMH experts. Thematic analysis was undertaken to explore the delivery of mental health services to people with ID since the 1960s. These themes were then analyzed to identify key lessons about delivering quality mental healthcare. Results: Key lessons suggest the need for: specialized IDMH services, clear policy and governance, including people with ID in the design and delivery of services, holistic and collaborative services, an equipped workforce, quality assessment and treatment, and ongoing research. Conclusions: A historical review of mental health services for people with the ID provided valuable insights into strategies that could be implemented to enhance mental healthcare for this important group.</p> <p>Keywords: Intellectual disability; intellectual disability mental health; mental health services; mental health professional; history</p> <p>Approximately 1–2% of the population have an intellectual disability (ID) (Maulik et al., [<reflink idref="bib20" id="ref1">20</reflink>]). Despite experiencing elevated rates of mental illness compared to the general population (Cooper et al., [<reflink idref="bib8" id="ref2">8</reflink>]), people with ID face multiple systemic barriers that prevent them from accessing mental health care (Whittle et al., [<reflink idref="bib36" id="ref3">36</reflink>]). Over the past 50 years, these barriers have changed in parallel with changes from institutional care to community-based models of care for people with ID. However, historical reflection regarding these changes, their impacts, and the implications for future services development are rarely undertaken.</p> <p>The type and availability of mental health services have been shaped globally by a number of factors including, for example, the evolution of societal views, attitudes and understanding of mental ill-health, population demographics, political support for funding models, the development of professional bodies, and more broadly the conceptualization of illness, impairment and disability. The provision of mental health services for people with ID has also historically been negatively influenced by diagnostic overshadowing, with mental health symptoms being inappropriately attributed to the persons disability (Mason & Scior, [<reflink idref="bib19" id="ref4">19</reflink>]), and negative beliefs held around the benefits of mental health treatments and interventions (Vereenooghe & Langdon, [<reflink idref="bib30" id="ref5">30</reflink>]).</p> <p>Reflecting the international evolution of mental health services, Australia has experienced three main eras of mental health service delivery, namely the dangerous lunatics era, the welfare and eugenics era, and most recently the era of individual rights and entitlement (Coleborne & MacKinnon, [<reflink idref="bib7" id="ref6">7</reflink>]). The need for change to facilitate the fulfillment of individual rights for people with ID is perhaps best articulated from the 1980s within the Richmond Report (Richmond, [<reflink idref="bib23" id="ref7">23</reflink>]), and later the Burdekin Report (Burdekin, [<reflink idref="bib6" id="ref8">6</reflink>]). Key recommendations from these reports called for the dismantling of institutional care and the development of community-based services supported by specialist hospitals to meet the diverse needs of people with a mental illness. In response to these seminal reports, national and state-based reform occurred. The responsibility for the provision of services to people with ID was split between the Australian Government and its constituent State and Territory Governments, and across the disability and health sectors (Parmenter, [<reflink idref="bib21" id="ref9">21</reflink>]). In keeping with international trends, mental health and disability services transitioned from institutional to community settings. Community mental health and disability services were developed separately with little scope for cross-sector collaboration (Evans et al., [<reflink idref="bib12" id="ref10">12</reflink>]; Parmenter, [<reflink idref="bib21" id="ref11">21</reflink>]; Rosenberg et al., [<reflink idref="bib24" id="ref12">24</reflink>]). This separation of services affected the training of mental health professionals, such that they became less educated on the complex mental health needs of people with ID (Trollor, Eagleson et al., [<reflink idref="bib28" id="ref13">28</reflink>]; Trollor, Ruffell et al., [<reflink idref="bib29" id="ref14">29</reflink>]) and now lack the confidence to meet their mental health needs (Weise & Trollor, [<reflink idref="bib34" id="ref15">34</reflink>]). At present, mental health services for people with ID living in Australia are predominately delivered within generalist services. Across each Australian state and territory there are limited specialist ID mental health services. These specialist services are also typically located within major cities and are not accessible to all people with ID and co-occurring mental ill-health.</p> <p>Internationally, and in Australia there is a drive to improve mental health care and mental health outcomes for people with ID. In Australia, as we look to implementing the recommendations made at the National Roundtable on the Mental Health of People with ID (NRMHPID)(Department of Developmental Disability Neuropsychiatry, [<reflink idref="bib11" id="ref16">11</reflink>]) for effective mental health care it is timely to evaluate past policy and services to inform future service development in this area. Individuals who have had significant experience in the area of ID mental health over a period of time can be valuable in identifying areas of innovation or barriers to the effective implementation of recommendations (Llewellyn, [<reflink idref="bib18" id="ref17">18</reflink>]). The insights gained from a historical review of Australian mental health services for people with ID may also be relevant and useful to other countries, as there are similarities in the way in which mental health services have been delivered nationally and internationally.</p> <p>This paper aims to, from the perspective of intellectual disability mental health (IDMH) experts: i) explore the delivery of mental health services over the last 50 years to people with ID in New South Wales (NSW), Australia, and ii) identify the key lessons from the delivery of mental health services for people with ID and co-occurring mental ill-health over the last 50 years.</p> <hd id="AN0148210040-2">METHODOLOGY</hd> <p></p> <hd id="AN0148210040-3">Study Design</hd> <p>This historical investigation used an interpretive descriptive approach (Thorne et al., [<reflink idref="bib26" id="ref18">26</reflink>]). Semi-structured interviews were held to explore the history of mental health service for people with ID from the perspective of key mental health, health and disability professionals, and ID advocates. The interviews were conducted by one of two members of the research team (insert initials of research team members – removed for blinding) and a standard interview guide was used to guide each interview (see Table 1). The interviews ran from 49 to 117 minutes.</p> <p>Table 1. Interview question guide</p> <p> <ephtml> <table><thead><tr><td /><td>Question</td></tr></thead><tbody><tr><td>1</td><td>Can you please provide us with a brief overview of your involvement with mental health services or supports for people with ID?</td></tr><tr><td>2</td><td>What has been your experience of providing mental health services to people with ID or alternatively supporting people with ID to access them?</td></tr><tr><td>3</td><td>What key changes have you witnessed over your time of engagement with ID health/mental health services?</td></tr><tr><td>4</td><td>In your opinion, what impact did the process of de-institutionalization have on the mental health services available to people with ID and, your ability to provide/or support people with ID to access clinical services?</td></tr><tr><td>5</td><td>What impact has the subsequent delineation of responsibilities between health and disability services had on provision of, or access to mental health services for people with ID?</td></tr><tr><td>6</td><td>Over your period of engagement can you please describe any key Federal or State government initiatives that have influenced mental health services for people with ID?</td></tr><tr><td>7</td><td>In addition to the Federal and State government who have been the key players in facilitating change in the area of IDMH?</td></tr><tr><td>8</td><td>Do you think people with ID have historically had a voice in how mental health services are delivered?</td></tr><tr><td>9</td><td>Over time what changes have you observed in the way in which people with ID participate in mental health services?</td></tr><tr><td>10</td><td>Thinking about the current service system, are they any good aspects of past IDMH service structures that have been lost or grown?</td></tr><tr><td>11</td><td>What do you think about the level of funding that commonwealth and state government have contributed toward IDMH services?</td></tr><tr><td>12</td><td>How has the workforce supporting people with IDMH changed overtime? Has this been for the better or worse?</td></tr><tr><td>13</td><td>What type of data do you think needs to be collected to inform service and policy development in this area?</td></tr><tr><td>14</td><td>In summary what do you think are the key lessons that can be learnt from history about providing accessible mental health services to people with ID?</td></tr></tbody></table> </ephtml> </p> <p>This research held ethics approval from UNSW HREC Rerence Number: 2013-7-10.</p> <hd id="AN0148210040-4">Participant Recruitment and Profile</hd> <p>This study used purposive sampling to identify eminent health and disability professionals and ID health advocates who worked in NSW, had significant experience in the field of IDMH and were known to the research team were invited via e-mail to participate in this study.</p> <p>We approached 17 people and a total of 14 people participated in an interview (face to face or via the telephone) in 2013. Half of whom were female and there was representation from key stakeholders (see Table 2). The participants had between 20 and 50 years' experience in the field and had contributed in a range of settings within the public and private health and disability sectors.</p> <p>Table 2. Participant demographics</p> <p> <ephtml> <table><thead><tr><td>Variable</td><td>Category</td><td>n</td></tr></thead><tbody><tr><td>Sex</td><td>Female</td><td>7</td></tr><tr><td>Male</td><td>7</td></tr><tr><td>Professional Background^</td><td>Advocacy*</td><td>2</td></tr><tr><td>Nursing</td><td>2</td></tr><tr><td>Paediatrician</td><td>1</td></tr><tr><td>Physician</td><td>2</td></tr><tr><td>Psychiatry</td><td>5</td></tr><tr><td>Psychology</td><td>2</td></tr></tbody></table> </ephtml> </p> <p>1 ^ All participants fitted into one category</p> <p>2 *This included a parent and professional advocate</p> <hd id="AN0148210040-5">Data Analysis</hd> <p>The audio files from the interviews were transcribed verbatim and then identifiable participant details were replaced with non-identifiable codes. The de-identified versions of the transcripts were imported into a project file in QRS NVivo 11 (QSR International, [<reflink idref="bib22" id="ref19">22</reflink>]). To ensure immersion, the researchers (JW and AM) listened to the recordings multiple times while editing transcripts for errors and re-reading each transcript. The researchers applied Braun and Clarke's a thematic analysis (Braun & Clarke, [<reflink idref="bib5" id="ref20">5</reflink>]).</p> <p>Two members of the research team (JW and AM) independently coded the data after all of the interviews had been completed. These researchers were health professionals with experience working within the disability and/or mental health sector, had research experience in the area of ID mental health, and experience analyzing qualitative data. Once all of the transcripts had been coded these two members of the research team met to review and critique themes. When there was disagreement between the researchers, we discussed the reasons for differences in opinion and developed a strategy for continuing with the analysis. Researcher JW then collated feedback and re-analyzed the data based on the agreed strategy. Once finalized researcher AM then reviewed coding and a discussion was held to reach consensus on coding.</p> <p>Two other members of the research team (JT and JW) then reviewed and critiqued the codes. Both of these team members were also health professionals with experience working within the disability and/or mental health sector, had research experience in the area of ID mental health. When there was disagreement between group members a discussion was held to determine the reasons for differences in opinion and to develop a strategy for continuing with the analysis. A researcher (JW) then collated the feedback and re-analyzed the data based on feedback and presented the finalized findings to all members of the team to reach agreement on the themes presented in this manuscript.</p> <p>When the thematic analysis was completed the authors then collaborated to determine the key lessons that could be derived from the experiences of the participants.</p> <hd id="AN0148210040-6">RESULTS</hd> <p>The analysis of the participants' experiences identified a range of themes relating to the delivery of mental health services from the 1960s to 2013 to people with ID in NSW, Australia. The authors then used these experiences to identify potential lessons that could be learnt about the provision of mental health services to people with ID. The most commonly identified themes included i) deinstitutionalization and subsequent delineation of health and disability services, ii) mental health governance and service delivery issues, iii) diagnostic and treatment challenges, iv) voice of and advocacy for people with ID, and v) research imperative. These themes are summarized in Table 3Table 4 and explored more extensively below.</p> <p>Table 3. Summary of themes</p> <p> <ephtml> <table><thead><tr><td /><td>Themes</td><td>Sub-themes</td></tr></thead><tbody><tr><td>1.</td><td>Deinstitutionalization and subsequent delineation of health and disability services</td><td><list list-type="Bullet"><list-item><p>Lack of holistic care that adequately meets the persons health needs.</p></list-item><list-item><p>An unrealistic expectation that generalist health services would be able to meet the needs of people with ID.</p></list-item><list-item><p>An overreliance on the private sector to provide mental health services to people with ID.</p></list-item></list></td></tr><tr><td>2.</td><td>Mental health governance and service delivery issues</td><td><list list-type="Bullet"><list-item><p>Insufficient guidelines around the roles and responsibilities of disability and health services.</p></list-item><list-item><p>Inadequate government funding.</p></list-item><list-item><p>Idiosyncratic delivery of ID mental health services.</p></list-item><list-item><p>An ill-equipped mental health workforce.</p></list-item></list></td></tr><tr><td>3.</td><td>Diagnostic and treatment challenges</td><td><list list-type="Bullet"><list-item><p>Poor recognition of mental illness in people with ID.</p></list-item><list-item><p>Insufficient access to quality treatment and support.</p></list-item></list></td></tr><tr><td>4.</td><td>Voice of and advocacy for people with ID</td><td><list list-type="Bullet"><list-item><p>n/a.</p></list-item></list></td></tr><tr><td>5.</td><td>Research imperative</td><td><list list-type="Bullet"><list-item><p>n/a.</p></list-item></list></td></tr></tbody></table> </ephtml> </p> <p>Table 4. Key lessons from the history of mental health services for people with ID and co-occurring mental ill-health</p> <p> <ephtml> <table><thead><tr><td>Themes</td><td>Key lessons</td></tr></thead><tbody><tr><td>Deinstitutionalization and the subsequent delineation of health and disability services</td><td><list list-type="Bullet"><list-item><p>Holistic mental health care is required.</p></list-item><list-item><p>Cross-sector collaboration between health and disability sectors is important.</p></list-item><list-item><p>Generalist mental health services would benefit from access to specialist ID mental health support.</p></list-item><list-item><p>Specialist ID mental health services have a place within the public mental health system.</p></list-item></list></td></tr><tr><td>Mental health governance and service delivery issues</td><td><list list-type="Bullet"><list-item><p>Clearly articulate governance is required around addressing the mental health needs of people with ID.</p></list-item><list-item><p>Guidelines that articulate the roles and responsibilities of stakeholders in meeting the mental health needs of people with ID are needed.</p></list-item><list-item><p>Additional government funding is required for mental health services for people with ID.</p></list-item><list-item><p>Consistency in the availability and access to ID mental health services across metro, rural and remote areas is important.</p></list-item><list-item><p>Effort is required to build the capacity of the generalist mental health workforce in the area of ID mental health.</p></list-item></list></td></tr><tr><td>Diagnostic and treatment challenges</td><td><list list-type="Bullet"><list-item><p>There is a need for strategies to overcome diagnostic overshadowing.</p></list-item><list-item><p>The mental health workforce develops capacity to investigate the reason(s) for a person's presenting behavior(s).</p></list-item><list-item><p>Active monitoring of psychotropic use is required.</p></list-item><list-item><p>Support is required to implement non-medication based mental health treatment.</p></list-item></list></td></tr><tr><td>Voice of and advocacy for people with ID</td><td><list list-type="Bullet"><list-item><p>People with ID have the right to be included in their mental health care.</p></list-item><list-item><p>People with ID need to be included in the design and delivery of mental health services.</p></list-item></list></td></tr><tr><td>Research imperative</td><td><list list-type="Bullet"><list-item><p>Routine data collected need to be able to consistently and accurately identify people with ID.</p></list-item><list-item><p>Research is required to integrate and interpret existing data sets on the mental health need of people with ID.</p></list-item></list></td></tr></tbody></table> </ephtml> </p> <hd id="AN0148210040-7">Deinstitutionalization and the Subsequent Delineation of Health and Disability Services</hd> <p>The participants spoke of how at the time of deinstitutionalization <emph>"there was a very strong desire to sort of have intellectual disability seen as different to mental illness which was good"</emph> (<reflink idref="bib12" id="ref21">12</reflink>). The analysis identified a range of positive implications of the deinstitutionalization process which included people with ID being seen as <emph>"a person first"</emph> (02) rather than a <emph>"patient"</emph> (02). They also said that the <emph>"rights of each human individual began to be articulated more clearly"</emph> (03) and that the process of deinstitutionalization encouraged acceptance <emph>"that the person with the disability is part of the mainstream rather than marginalising them"</emph> (08). However, the participants also spoke about the negative impact that deinstitutionalization had on meeting the mental health needs of people with ID. They said that the <emph>"ideological push towards the more social and educative constructs"</emph> (05) and getting <emph>"rid of the medical model"</emph> (07) was a "<emph>step backwards"</emph> (05) in relation to mental health care. In particular, they identified that the process had resulted in de-coupling of disability and health services with a range of flow on effects including: i) a lack of a holistic care that adequately meets the persons health needs, ii) an unrealistic expectation that generalist health services would be able to meet the needs of people with ID, and iii) an overreliance on the private sector to provide mental health services to people with ID. Each of these implications is discussed in more detail below.</p> <p></p> <ulist> <item> (i) Lack of a holistic care that adequately meets the persons health needs</item> </ulist> <p>The first effect of delineation of disability and health services was that there was not a <emph>"sufficient understanding of the complexity of the interplays that there often is between disability related needs and mental health related needs"</emph> (<reflink idref="bib12" id="ref22">12</reflink>) and that it was overly simplistic to say that <emph>"people with disability were not sick"</emph> (03). As one participant said, <emph>"disability is not just a deficit state, there are also profoundly disrupted situations, neural architecture, mental illness, physical illness, and complex needs across all domains"</emph> (05). Some of the participants spoke about how <emph>"holistic care was probably pushed out the window at the same time</emph>" (02) as deinstitutionalization and the delineation of disability and health services. The separation of these services had resulted in service <emph>"silo's in New South Wales"</emph> (05) which in turn <emph>"took away the team approach"</emph> (06) toward service provision.</p> <p>To provide holistic care, the participants spoke of the need for a service system that is able to <emph>"support you over your mental health journey during both times of illness and then when you're well"</emph> (07) and that is able to <emph>"keep what the families' needs and the individual persons needs are at fore of what they're doing"</emph> (<reflink idref="bib11" id="ref23">11</reflink>). The participant's also thought that mental health services need to be delivered by multidisciplinary teams that work collaboratively. From the perspective of the participants <emph>"the gold standard is a multidiscipline team"</emph> (<reflink idref="bib11" id="ref24">11</reflink>) when delivering mental health service to people with ID. The participants also highlighted that having a range of disciplines was important because, as one participant said, <emph>"they think of things that I don't think of"</emph> (<reflink idref="bib10" id="ref25">10</reflink>). Within a multi-disciplinary team, the participants said that it was important that the professionals worked collaboratively. In particular, some of the participants highlighted the need <emph>"for mental health and disability to work hand in glove"</emph> (<reflink idref="bib12" id="ref26">12</reflink>) and to <emph>"have people put their foot in both camps and be able to interpret what's going on so the client gets a good service"</emph> (08).</p> <p></p> <ulist> <item> (ii) An unrealistic expectation that generalist health services would be able to meet the needs of people with ID</item> </ulist> <p>The second effect that the participants spoke about was that reliance on generalist health services presented a barrier for people with ID to have their mental health needs met. In particular, one participant felt that to refer <emph>"somebody with intellectual disability and mental illness to the local general practitioner it is really just pathetic"</emph> (03) given the complexity of their health needs. The participants also commented on how <emph>"standard mental health services ... did not seem to regard some of these incredible clinical conundrums as their purview at all</emph>" (05) and that this presented as a major access barrier for people with ID. The flow on effect of this seems to be that when people with ID had "<emph>obvious illness, they had chronic disorders of all kinds and we [health professionals] weren't doing anything about it"</emph> (03).</p> <p></p> <ulist> <item> (iii) An overreliance on the private sector to provide mental health services to people with ID</item> </ulist> <p>Lastly, some of the participants also said that there was an overreliance of the private sector to provide mental health services to people with ID because of <emph>the "lack of [intellectual disability mental health] positions"</emph> (<reflink idref="bib10" id="ref27">10</reflink>) within the public mental health sector. The participants explained that while private sector psychiatrists had <emph>"been very helpful"</emph> (06) that private health care was not available to a "<emph>significant proportion of the population</emph>" (<reflink idref="bib10" id="ref28">10</reflink>) because the <emph>"financial side of it is problematic"</emph> (<reflink idref="bib10" id="ref29">10</reflink>).</p> <hd id="AN0148210040-8">Mental Health Governance and Service Delivery Issues</hd> <p>The analysis identified ongoing issues around the governance and delivery of mental health services to people with ID and co-occurring mental ill-health. Four contributors that the participants spoke about in relation to these issues were: i) insufficient guidelines around the roles and responsibilities of disability and health services, ii) inadequate government funding, iii) idiosyncratic delivery of ID mental health services, and iv) an ill-equipped mental health workforce.</p> <p></p> <ulist> <item> Insufficient guidelines around the roles and responsibilities between disability and health services</item> </ulist> <p>Some of the participants spoke about the tension between health and disability services over the roles and responsibilities in working with people with ID and mental illness. Arguments about financial responsibility in particular were highlighted by statements like <emph>"no he's your client you need spend your bucket of money"</emph> (07). Another participant supported this when they described an experience whereby a mental health team had said <emph>"you do disability, you're a disability team, we do mental health. You look after your disabled people and we'll look after our mental health people but don't send us anybody with disability"</emph> (03).</p> <p></p> <ulist> <item> (ii) Inadequate government funding</item> </ulist> <p>When asked about the level of funding that the Australian and State Governments have contributed to ID mental health services, the participants spoke of the inadequacy of available funding including a lack of <emph>"funding for key positions such as psychiatry"</emph> (<reflink idref="bib11" id="ref30">11</reflink>) and that <emph>"if there was more money you'd have more services"</emph> (08). One of the issues raised was that <emph>"everything really has been revenue neutral for 20 years in disability"</emph> (<reflink idref="bib11" id="ref31">11</reflink>) and that successive governments had taken <emph>"opportunities to cut corners and cut costs rather than to, rather than to actually really see that there was a way for people [with intellectual disability] having a better life"</emph> (02). One participant commented that Australians' are <emph>"privately wealthy and publicly poor"</emph> (<reflink idref="bib10" id="ref32">10</reflink>) and that <emph>"we do not look after the disadvantaged at all well"</emph> (<reflink idref="bib10" id="ref33">10</reflink>).</p> <p>Some of the participants spoke about the need for government to <emph>"put up the money"</emph> (05) if they are <emph>"ideologically committed"</emph> (05) to meeting the needs of people with ID and co-occurring mental ill-health. As one participant said, <emph>"there is no way in the wide world that we are ever going to get to adequate mental health care for these guys [people with intellectual disability] unless we have a substantial funding allocation</emph>" (<reflink idref="bib12" id="ref34">12</reflink>).</p> <p></p> <ulist> <item> (iii) Idiosyncratic delivery of ID mental health services.</item> </ulist> <p>The participants spoke extensively about variability in services from region to region including the capacity of the local mental health workforce to meet the needs of people with ID and co-occurring mental illness. For example, one participant said that <emph>"regional competencies vary hugely, and regional interests vary hugely</emph>" (05). The participants suggested a range of contributing factors including the lack of <emph>"any kind of general policies"</emph> (03), lack of <emph>"evidence-based policy"</emph> (<reflink idref="bib10" id="ref35">10</reflink>), and the lack of a systemic approach to service delivery with clear governance structures. Commenting on the ad-hoc nature of service delivery, one participant said, <emph>"there's these pockets where things are happening that doesn't always necessarily seem to be coming from a systemic level a lot of it seems to be people on the ground identifying the issue and kind of, problem solving it with the resources they've got"</emph> (<reflink idref="bib12" id="ref36">12</reflink>). This reflection was supported by other participants who said <emph>"there are always people around who are able to do all of those things. It's not systematic, not part of the system necessarily"</emph> (08) or <emph>"there's many, many amazing individuals who work in this field who are extremely impressive and inspiring in terms of what they do and what they achieve and that's a great strength I think. But in terms of systems, well there's an awful lot of weaknesses"</emph> (<reflink idref="bib10" id="ref37">10</reflink>).</p> <p>In relation to governance, some of the challenges identified in the area of ID mental health included a <emph>"lack of understanding and suspicion of [intellectual disability mental health] expertise"</emph> (<reflink idref="bib10" id="ref38">10</reflink>), that <emph>"decisions are made that are political rather than patient based"</emph> (<reflink idref="bib11" id="ref39">11</reflink>), and <emph>"the left hand doesn't know what the right hand's doing"</emph> (05). The participants also spoke of how, in the absence of a systemic approach, the delivery of services to people with ID was <emph>"heavily dependent on personalities"</emph> (<reflink idref="bib10" id="ref40">10</reflink>) and that it <emph>"has been down to individuals and the relationship people have been able to build up with a particular service"</emph> (08). As one participant said, <emph>"I think what we need to do is to build in governance"</emph> (05)</p> <p></p> <ulist> <item> (iv) An ill-equipped mental health workforce</item> </ulist> <p>Some of the participants spoke about how, with devolution of institutional base care, a "<emph>huge amount of expertise and funding was lost</emph>" (06) and there "<emph>was a deskilling of the workforce</emph>" (06) and <emph>"a de-specialisation" (</emph>11). This had led to a situation where there were <emph>"not enough psychiatrists who are particularly skilled in this area"</emph> (08). The participants also spoke about a forthcoming further loss because those health professional who were trained in the area of ID mental health are retiring, as one participant said <emph>"there's a whole heap who are older [referring the health professionals], there's a few younger ones but often, they're not seeing as many [people with intellectual disability] really. So, that is a real issue, you know. There are not many young ones coming up"</emph> (<reflink idref="bib10" id="ref41">10</reflink>). This was supported by another participant who said, <emph>"he [referring to an ID mental health professional] retired 2 years ago and now I have nobody"</emph> (<reflink idref="bib11" id="ref42">11</reflink>). Some of the participants also spoke about how the process of deinstitutionalization had <emph>"just destroyed the whole profession"</emph> (<reflink idref="bib14" id="ref43">14</reflink>) of nurses specializing in ID.</p> <p>The participants also identified a range of other factors contributing to the current lack of capacity within the mental health workforce, for example, a disinterest in the area of ID mental health. As one participant said, <emph>"it's a difficult field to recruit people into"</emph> (<reflink idref="bib10" id="ref44">10</reflink>) given the lack of formal training opportunities. Participants said that <emph>"we're not able to train people as much as we used to"</emph> (<reflink idref="bib11" id="ref45">11</reflink>) and that when training was offered to health professionals that <emph>"people would roll their eyes or not turn up or look bored"</emph> (09).</p> <hd id="AN0148210040-9">Diagnostic and Treatment Challenges</hd> <p>The participants spoke about a range of challenges in the diagnosis and treatment of mental illness in people with ID. These included i) poor recognition of mental illness in people with ID, and ii) insufficient access to quality treatment and support.</p> <p></p> <ulist> <item> Poor recognition of mental illness in people with an ID</item> </ulist> <p>The participants spoke about two main factors that they felt had contributed to the lack of recognition of mental illness in people with ID. The first was the belief that <emph>"people with intellectual disability don't have mental health problems"</emph> (07). For example, one participant spoke about how historically <emph>"the state of the art was not to actually think that people with intellectual disability had mental health problems"</emph> (08). The second factor was the inaccurate attribution of a person's mental health symptoms to that person's intellectual disability. As one participant said the <emph>"phenomenon which bedevils intellectual delay is overshadowing"</emph> (09). This was supported by another participant who said that some mental health professionals incorrectly thought the person's presenting <emph>"problem was behavioural and that they [referring to a person with intellectual disability] didn't have a mental health disorder you know, that it was part of their disability"</emph> (06).</p> <p>The flow on effect of these barriers appeared to be that the <emph>"physical and mental health [of people with intellectual disability] was still poorly undervalued and under resourced in New South Wales"</emph> (02). The participants noted the importance that service providers don't "<emph>forget the fact that this is a person, and that every person with a disability can have all the other diseases</emph>" (04).</p> <p>Some of the participants said that there is a situation where mental health services did not <emph>"want deal with people with intellectual disability because you know, their problems were perceived as behavioural"</emph> (<reflink idref="bib12" id="ref46">12</reflink>). The approach of arguing "<emph>that someone's behaviour is behavioural is not adding value"</emph> (<reflink idref="bib10" id="ref47">10</reflink>) to the person's mental health care and fails to investigate the reasons for the presenting behavior. While the participants acknowledged that <emph>"we are doing more [mental health] assessments"</emph> (<reflink idref="bib11" id="ref48">11</reflink>) of people with ID there still remains tension between <emph>"points of view about challenging behaviour and mental health or psychiatric illness"</emph> (02) and that this <emph>"is an area which ... remains confusing and not clearly identified"</emph> (02).</p> <p></p> <ulist> <item> (ii) Insufficient <emph>access to quality treatment and support</emph></item> </ulist> <p>The participants spoke of <emph>"very sloppy use and overuse of psychotropic drugs in intellectual disability institutions"</emph> (<reflink idref="bib12" id="ref49">12</reflink>) and the lack of timely psychotropic medication reviews. For example, one of the participants said people with ID <emph>"can be put on medication by somebody and no one ever takes it off or reviews it"</emph> (<reflink idref="bib11" id="ref50">11</reflink>). One participant said that when they <emph>"first started working, medication really was the only strategy"</emph> (03) in managing mental illness in people with ID. While participants spoke about a shift <emph>"towards a therapeutic attempt other than medications"</emph> (04) for people with ID, they said that <emph>"there is very little service delivery"</emph> (<reflink idref="bib10" id="ref51">10</reflink>) and that people with ID continue to miss out on <emph>"proper treatment"</emph> (08). In particular, there appears to be <emph>a "dearth of people prepared to be involved in long term continuing care"</emph> (09) of people with ID and co-occurring mental ill-health. The participants spoke about that <emph>"what these people need is on-going mental health support"</emph> (06).</p> <p>The participants suggested that to overcome the diagnostic and treatment challenges that there was a need for a "service base where assessment and treatment" (08) are provided to people with intellectual disability. To achieve this, one participant suggested that there was a need for <emph>"mental health people to be more available, more open to at least listening to them [people with intellectual disability] and working out and helping them in anyway"</emph> (01). This was supported by another participant who said that <emph>"we need people who are actually going to work with families in whatever capacity there is"</emph> (06).</p> <hd id="AN0148210040-10">Voice of and Advocacy for People with Intellectual Disability</hd> <p>There was agreement among the participants that people with ID had not historically had a voice on how mental health services were run or on their mental health care. The participants spoke about a number of barriers to the participation of people with ID including for example, a <emph>"lack of knowledge"</emph> (07) about ID mental health among mental health professionals and policy makers, <emph>"institutional barriers"</emph> (05), <emph>"the fact that mental health services haven't focused on this group"</emph> (<reflink idref="bib12" id="ref52">12</reflink>), the structure of consultations whereby multiple people attend and <emph>"talk amongst themselves"</emph> (09) while the person with ID <emph>"sits in the corner"</emph> (09), and advocates who <emph>"speak for the families almost universally"</emph> (09).</p> <p>The participants also commented that this situation needs to change because when <emph>"people do not have a voice of their own, governments will not respond"</emph> (03). Also, that until people with ID are viewed as part of the generalist mental health system that they are unlikely to have a voice because <emph>"the loudest voices tend to come from the people who already know that service system"</emph> (<reflink idref="bib12" id="ref53">12</reflink>) and they have had to rely on <emph>"advocates on the inside to be able to be heard"</emph> (08).</p> <p>The participants spoke about how <emph>"advocacy is vital"</emph> (03) and that it can apply some <emph>"political pressure"</emph> (08) to promote to the <emph>"collective responsibility of our mental health services to provide mental health services to people with disabilities"</emph> (08). One participant identified that it was particularly important to <emph>"listen to people who have been working in the area and develop services around where they're telling you where the gaps are and where they're telling you the things that work; you would have services that hopefully would continue to work"</emph> (06).</p> <hd id="AN0148210040-11">Research Imperative</hd> <p>When the participants were asked about the type of data that they thought needed to be collected to inform service and policy development in the area of ID mental health, they highlighted two key points. Firstly, that there was a need for a consistent way to identify people with ID within existing health and other related data sets. For example, one participant suggested that the <emph>"problem is with definition of intellectual disability"</emph> (03) because different definitions are used across datasets. The participants also spoke about how it was difficult to determine mental health care access and participants in Australia because <emph>"there is no proper data collection"</emph> (03) and there is <emph>"no code for [intellectual] disability"</emph> (<reflink idref="bib11" id="ref54">11</reflink>).</p> <p>Secondly, the analysis suggested that the participants felt that there is a need to integrate and interrogate existing data sets, rather than collecting new data. For example, one participant said, <emph>"there's an enormous amount of data out there it just needs to be collated"</emph> (06). Others suggested that there needed to be <emph>an "integration of data collection and database"</emph> (05). Some of the participants suggested that <emph>"Western Australia's system has been fantastic"</emph> (<reflink idref="bib11" id="ref55">11</reflink>) in better understanding the health and mental health needs of people with ID because of their data collection systems.</p> <hd id="AN0148210040-12">DISCUSSION</hd> <p>The study has explored the delivery of mental health services from the 1960s to 2013 to people with ID in NSW from the perspective of ID mental health experts. Their experiences highlight that people with ID have historically faced, and continue to face, a range of systemic issues when accessing mental health services that meet their needs. The participants' experiences have been further analyzed to identify potential key lessons about delivering mental health services to people with ID and co-occurring mental ill-health. The key lessons are articulated in table four and can be summarized into five categories including: i) mental health service models for people with ID, ii) operation of mental health services for people with ID, iii) mental health workforce capacity in the area of ID mental health, iv) diagnosis and treatment of mental ill-health in people with ID, and v) research capacity. Each of these categories is explored in detail below.</p> <hd id="AN0148210040-13">Mental Health Service Models for People with Intellectual Disability</hd> <p>The participants' experiences indicated that generalist mental health service models are unable to meet the mental health needs of people with ID. This may suggest that there is need, like in other complex areas of health care to facilitate access to specialists in the area of IDMH. This finding is in alignment with the current body of literature that reports that specialists have an important role in the delivery of health care to people with ID (Balogh et al., [<reflink idref="bib1" id="ref56">1</reflink>]). It also supports a recent study by Weise et al. which found that specialized services have an important role in meeting the rights and mental health needs of this group (Weise et al., [<reflink idref="bib33" id="ref57">33</reflink>]). Highlighted in the study are some core characteristics that may be required of a specialist ID mental health service. These include that services i) have a place within mainstream services, ii) are available across Australia, and iii) that people with ID need to be involved in the design and delivery of the service. The need to integrate specialist services within mainstream services is key to preventing a siloed service sector, and to continue to build capacity within the mainstream sector. While the implementation of a co-design approach in the planning, delivery and evaluation of mental health services are in alignment with the recommendations of the recent NRMHPID (Department of Developmental Disability Neuropsychiatry, [<reflink idref="bib11" id="ref58">11</reflink>]). Evaluations of specialist models of care in the United Kingdom and the United States of America indicate that they can impact positively on outcomes for people with ID, reduce the need for emergency services, and reduce associated costs. These specialist services also highlight the benefit of integrates services, that are strengths based, and work in partnerships with key stakeholders (Beasley et al., [<reflink idref="bib2" id="ref59">2</reflink>]; Hall et al., [<reflink idref="bib13" id="ref60">13</reflink>]; Kalb et al., [<reflink idref="bib15" id="ref61">15</reflink>]).</p> <hd id="AN0148210040-14">Operation of Mental Health Services for People with Intellectual Disability</hd> <p>In relation to the operation of mental health services, the study suggests that there is a need for clear policy and governance structures. This appears to be important because in the absence of these, the participants felt that mental health services had not reached their full potential for people with ID. In addition, the experiences of the participants suggested the need for mental health services that are holistic in nature and facilitate cross-sector collaboration. These characteristics are in alignment with the recommendations made within the Accessible Mental Health Services for People with Intellectual Disability: A Guide for Providers (Department of Developmental Disability Neuropsychiatry, [<reflink idref="bib9" id="ref62">9</reflink>]) and the Intellectual Disability Mental Health Core Competency Framework (Department of Developmental Disability Neuropsychiatry, [<reflink idref="bib10" id="ref63">10</reflink>]).</p> <p>Given the relatively recent transition of the National Disability Insurance Scheme (NDIS) in Australia, which funds a range of supports and services for Australian's with a disability (for more detail see www.ndis.gov.au), it is important to develop guidelines that clearly articulate the roles, interactions, and responsibilities between mental health services and NDIS funded services in meeting the mental health needs of people with ID. The development of such guidelines would respond to the recommendation made by the Australian Government's Joint Standing Committee on the NDIS to address the interface between health and the NDIS (Joint Standing Committee on the National Disability Insurance Scheme, [<reflink idref="bib14" id="ref64">14</reflink>]).</p> <hd id="AN0148210040-15">Mental Health Workforce Capacity in the Area of ID Mental Health</hd> <p>An ill-equipped mental health workforce was identified as a barrier to mental health care for people with ID in this study. The shortcomings of the mental health workforce in relation to their capability and confidence in meeting the needs of this group have been well documented (Weise & Trollor, [<reflink idref="bib34" id="ref65">34</reflink>]). A series of studies from the perspective of people with ID, their support networks, and ID mental health experts have identified the core attributes required of the generalist mental health workforce to meet the mental health needs of this group (Weise et al., [<reflink idref="bib31" id="ref66">31</reflink>]; Weise, Fisher, Trollor et al., [<reflink idref="bib32" id="ref67">32</reflink>]; Weise, Fisher, Whittle et al., [<reflink idref="bib35" id="ref68">35</reflink>]). Equipping the mental health workforce with these attributes is a key component to the delivery of quality mental health service to people with ID. To date, in Australia there is yet to be a workforce development strategy in the area of ID mental health. The work of Weise and Trollor identified key elements that could be used to inform the development of such a strategy (Weise & Trollor, [<reflink idref="bib34" id="ref69">34</reflink>]).</p> <hd id="AN0148210040-16">Diagnosis and Treatment of Mental Ill Health in People with Intellectual Disability</hd> <p>In relation to the diagnosis of mental ill-health in people with ID, this study indicates the importance of i) efforts to overcome diagnostic overshadowing, and ii) ensuring that the mental health sector has capacity to assess behaviors of concern to determine if they are a symptom of mental illness. These findings are consistent with previous research which has shown that diagnostic overshadowing and interpreting the behavioral signs of mental illness as barriers to the accurate assessment of mental illness in people with ID (Bertelli et al., [<reflink idref="bib3" id="ref70">3</reflink>]).</p> <p>As for the treatment of mental illness, the experience of the participants suggests the need for the active monitoring of the use of psychotropic medications and the need to prevent the overuse of these medications in people with ID. This is particularly important because psychotropic medication remains disproportionally high among people with ID (Sheehan et al., [<reflink idref="bib25" id="ref71">25</reflink>]) and the overuse of psychotropic medication in the genal population has been associated with elevated risks of cardiometabolic morbidity and mortality. Perhaps the implementation of strategies, such as those outlined by Trollor et al. ([<reflink idref="bib27" id="ref72">27</reflink>]) and the STOMP program (Branford et al., [<reflink idref="bib4" id="ref73">4</reflink>]) may begin to address this issue.</p> <hd id="AN0148210040-17">Research Capacity</hd> <p>The findings from the study suggest the need to use existing administrative data sets to help inform the development and delivery of mental health services for people with ID. This is in alignment with the recommendations of the 2018 NRMHPID. A literature review by Krahn and Fox ([<reflink idref="bib16" id="ref74">16</reflink>]) suggests that the use of data to inform decision makers may reduce the health disparities experienced by people with ID. While health administrative data can also be useful in service planning and understanding access to and quality of mental health care (Lin et al., [<reflink idref="bib17" id="ref75">17</reflink>]). However, the challenge faced in NSW, and in other jurisdictions is that the presence of ID is not routinely collected in administrative health data sets. Concerted action is required to advocate for the inclusion of ID status within administrative health data sets similar to the IDEAS data-based set up in Western Australia.</p> <hd id="AN0148210040-18">POLICY AND PRACTICE IMPLICATIONS</hd> <p>While the study was based in NSW, Australia, the findings and the implications for policy and practice have international relevance, given the similarities in the challenges faced in meeting the mental health needs of people with ID. Our findings suggest the need for policy that is co-produced with people with ID, articulates the mental health needs of people with ID, facilitates cross-sector collaboration, and guides the delivery of equitable service provision regardless of where the person with ID lives. In relation to clinical practice, our findings provide insights into the attributes that the mental health workforce may need including overcoming diagnostic overshadowing, being able to assess behavior, guide appropriate use and monitoring of psychotropic medication, and the use of non-medication-based mental health treatment.</p> <hd id="AN0148210040-19">LIMITATIONS</hd> <p>A limitation of the study is that it only consulted with fourteen ID mental health experts in New South Wales. This may limit the generalizability of the study's findings. Further research is required from the perspective of people with ID, and their support networks to understand their experiences of mental health services overtime and the key lessons that can be learnt from these experiences. Undertaking a similar historical review in other States of Australia, and other countries may assist further in informing strategies to improve the accessibility of mental health services in different jurisdictions.</p> <hd id="AN0148210040-20">CONCLUSION</hd> <p>A historical review of mental health services for people with ID can provide valuable insights into strategies that may enhance mental health care for this important group. Key lessons learnt from the experience of ID mental health experts in the delivery of mental health care include the need for specialized IDMH services, clear policy and governance, including people with ID in the design and delivery of services, holistic and collaborative services, an equipped workforce, quality assessment and treatment, and ongoing research.</p> <hd id="AN0148210040-21">ACKNOWLEDGMENTS</hd> <p>We would like to thank the participants for sharing their wealth of experience with us.</p> <hd id="AN0148210040-22">DISCLOSURE STATEMENT</hd> <p>No potential conflict of interest was reported by the authors.</p> <ref id="AN0148210040-23"> <title> REFERENCES </title> <blist> <bibl id="bib1" idref="ref56" type="bt">1</bibl> <bibtext> Balogh, R., McMorris, C. A., Lunsky, Y., Ouellette‐Kuntz, H., Bourne, L., Colantonio, A., & Gonçalves‐Bradley, D. C. (2016). Organising healthcare services for persons with an intellectual disability (review). The Cochrane Library.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref59" type="bt">2</bibl> <bibtext> Beasley, J. B., Kalb, L., & Klein, A. (2018). Improving mental health outcomes for individuals with intellectual disability through the Iowa START (I-START) program. Journal of Mental Health Research in Intellectual Disabilities, 11 (4), 287 – 300. https://doi.org/10.1080/19315864.2018.1504362</bibtext> </blist> <blist> <bibl id="bib3" idref="ref70" type="bt">3</bibl> <bibtext> Bertelli, M. O., Rossi, M., Scuticchio, D., & Bianco, A. (2015). Diagnosing psychiatric disorders in people with intellectual disabilities: Issues and achievements. Advances in Mental Health and Intellectual Disabilities, 9 (5), 230 – 242. https://doi.org/10.1108/AMHID-05-2015-0023</bibtext> </blist> <blist> <bibl id="bib4" idref="ref73" type="bt">4</bibl> <bibtext> Branford, D., Gerrard, D., Saleem, N., Shaw, C., & Webster, A. (2019). Stopping over-medication of people with an intellectual disability, autism or both (STOMP) in England part 2–the story so far. Advances in Mental Health and Intellectual Disabilities, 13 (1), 41 – 51. https://doi.org/10.1108/AMHID-02-2018-0005</bibtext> </blist> <blist> <bibl id="bib5" idref="ref20" type="bt">5</bibl> <bibtext> Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77 – 101. https://doi.org/10.1191/1478088706qp063oa</bibtext> </blist> <blist> <bibl id="bib6" idref="ref8" type="bt">6</bibl> <bibtext> Burdekin, B. (1993). Human rights and mental illness: Report of the national inquiry into the human rights of people with mental illness. Human Rights and Equal Opportunity Commission.</bibtext> </blist> <blist> <bibl id="bib7" idref="ref6" type="bt">7</bibl> <bibtext> Coleborne, C., & MacKinnon, D. (2003). Madness in Australia: Histories, heritage and the asylum. Univ. of Queensland Press.</bibtext> </blist> <blist> <bibl id="bib8" idref="ref2" type="bt">8</bibl> <bibtext> Cooper, S., Smiley, E., Morrison, J., Williamson, A., & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: Prevalence and associated factors. British Journal of Psychiatry, 190 (1), 27 – 35. https://doi.org/10.1192/bjp.bp.106.022483</bibtext> </blist> <blist> <bibl id="bib9" idref="ref62" type="bt">9</bibl> <bibtext> Department of Developmental Disability Neuropsychiatry. (2014). Accessible mental health services for people with an intellectual disability: A guide for providers. UNSW Sydney.</bibtext> </blist> <blist> <bibtext> Department of Developmental Disability Neuropsychiatry. (2016). The intellectual disability mental health core competency framework: A manual for mental health professionals.UNSW Sydney.</bibtext> </blist> <blist> <bibtext> Department of Developmental Disability Neuropsychiatry. (2018). Recommendations from the national roundtable on the mental health of people with intellectual disability 2018. UNSW Sydney.</bibtext> </blist> <blist> <bibtext> Evans, E., Howlett, S., Kremser, T., Simpson, J., Kayess, R., & Trollor, J. (2012). Service development for intellectual disability mental health: A human rights approach. Journal of Intellectual Disability Research, 56 (11), 1098 – 1109. https://doi.org/10.1111/j.1365-2788.2012.01636.x</bibtext> </blist> <blist> <bibtext> Hall, I., Parkes, C., Samuels, S., & Hassiotis, A. (2006). Working across boundaries: Clinical outcomes for an integrated mental health service for people with intellectual disabilities. Journal of Intellectual Disability Research, 50 (8), 598 – 607. https://doi.org/10.1111/j.1365-2788.2006.00821.x</bibtext> </blist> <blist> <bibtext> Joint Standing Committee on the National Disability Insurance Scheme. (2018). Transitional arrangements for the NDIS. Australian Government.</bibtext> </blist> <blist> <bibtext> Kalb, L. G., Beasley, J., & Caoili, A. (2019). Improvement in mental health outcomes and caregiver service experiences associated with a START program. Journal of American Intellectual and Developmental Disabilities, 124 (1), 25 – 34. https://doi.org/10.1352/1944-7558-124.1.25</bibtext> </blist> <blist> <bibtext> Krahn, G. L., & Fox, M. H. (2014). Health disparities of adults with intellectual disabilities: What do we know? What do we do? Journal of Applied Research in Intellectual Disabilities, 27 (5), 431 – 446. DOI: 10.1111/jar.12067</bibtext> </blist> <blist> <bibtext> Lin, E., Balogh, R., Cobigo, V., Ouellette-Kuntz, H., Wilton, A. S., & Lunsky, Y. (2013). Using administrative health data to identify individuals with intellectual and developmental disabilities: A comparison of algorithms. Journal of Intellectual Disability Research, 57 (5), 462 – 477. https://doi.org/10.1111/jir.12002</bibtext> </blist> <blist> <bibtext> Llewellyn, G. (2014). Report of audit of disability research in Australia. Sydney, Centre for Disability Research and Policy, University of Sydney.</bibtext> </blist> <blist> <bibtext> Mason, J., & Scior, K. (2004). 'Diagnostic overshadowing' amongst clinicians working with people with intellectual disabilities in the UK. Journal of Applied Research in Intellectual Disabilities, 17 (2), 85 – 90. https://doi.org/10.1111/j.1360-2322.2004.00184.x</bibtext> </blist> <blist> <bibtext> Maulik, P. K., Mascarenhas, M. N., Mathers, C. D., Dua, T., & Saxena, S. (2011). Prevalence of intellectual disability: A meta-analysis of population-based studies. Research in Developmental Disabilities, 32 (2), 419 – 436. https://doi.org/10.1016/j.ridd.2010.12.018</bibtext> </blist> <blist> <bibtext> Parmenter, T. R. (1988). An analysis of Australian mental health services for people with mental retardation. Journal of Intellectual and Developmental Disability, 14 (1), 9 – 13. DOI: 10.1080/07263868800033131</bibtext> </blist> <blist> <bibtext> QSR International. (2016). Nvivo 11.</bibtext> </blist> <blist> <bibtext> Richmond, D. (1983). Inquiry into health services for the psychiatrically ill and developmentally disabled. NSW Department of Health.</bibtext> </blist> <blist> <bibtext> Rosenberg, S., Hickie, I. B., & Mendoza, J. (2009). National mental health reform: Less talk, more action. Medical Journal of Australia, 190 (4), 193 – 195. https://doi.org/10.5694/j.1326-5377.2009.tb02346.x</bibtext> </blist> <blist> <bibtext> Sheehan, R., Hassiotis, A., Walters, K., Osborn, D., Strydom, A., & Horsfall, L. (2015). Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ: British Medical Journal, 351, h4326. https://doi.org/10.1136/bmj.h4326</bibtext> </blist> <blist> <bibtext> Thorne, S., Kirkham, S. R., & O'Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3 (1), 1 – 11. https://doi.org/10.1177/160940690400300101</bibtext> </blist> <blist> <bibtext> Trollor, J., Salomon, C., & Franklin, C. (2016). Prescribing psychotropic drugs to adults with an intellectual disability. Australian Prescriber, 39 (4), 126 – 130. https://doi.org/10.18773/austprescr.2016.048</bibtext> </blist> <blist> <bibtext> Trollor, J. N., Eagleson, C., Turner, B., Salomon, C., Cashin, A., Iacono, T., ... Lennox, N. (2016). Intellectual disability health content within nursing curriculum: An audit of what our future nurses are taught. Nurse Education Today, 45, 72 – 79. https://doi.org/10.1016/j.nedt.2016.06.011</bibtext> </blist> <blist> <bibtext> Trollor, J. N., Ruffell, B., Tracy, J., Torr, J. J., Durvasula, S., Iacono, T., ... Lennox, N. (2016). Intellectual disability health content within medical curriculum: An audit of what our future doctors are taught. BMC Medical Education, 16 (1), 1 – 9. https://doi.org/10.1186/s12909-016-0625-1</bibtext> </blist> <blist> <bibtext> Vereenooghe, L., & Langdon, P. E. (2013). Psychological therapies for people with intellectual disabilities: A systematic review and meta- analysis. Research in Developmental Disabilities, 34 (11), 4085 – 4102. https://doi.org/10.1016/j.ridd.2013.08.030</bibtext> </blist> <blist> <bibtext> Weise, J., Fisher, K. R., & Trollor, J. N. (2017). Establishing core mental health workforce attributes for the effective mental health care of people with an intellectual disability and co-occurring mental ill health. Journal of Applied Research in Intellectual Disabilities, 30 (S1), 22 – 33. https://doi.org/10.1111/jar.12407</bibtext> </blist> <blist> <bibtext> Weise, J., Fisher, K. R., & Trollor, J. N. (2018). What makes generalist mental health professionals effective when working with people with an intellectual disability? A family member and support person perspective. Journal of Applied Research in Intellectual Disabilities, 31 (3), 413. https://doi.org/10.1111/jar.12420</bibtext> </blist> <blist> <bibtext> Weise, J., Fisher, K. R., Turner, B., & Trollor, J. N. (2020). What is the capability of the Australian mental health workforce to meet the needs of people with an intellectual disability and co-occurring mental ill health?. Journal of Intellectual & Developmental Disability, 45 (2), 184 – 193. https://doi.org/10.3109/13668250.2019.1622659</bibtext> </blist> <blist> <bibtext> Weise, J., & Trollor, J. N. (2018). Preparedness and training needs of an Australian public mental health workforce in intellectual disability mental health. Journal of Intellectual & Developmental Disability, 43 (4), 431 – 440. https://doi.org/10.3109/13668250.2017.1310825</bibtext> </blist> <blist> <bibtext> Weise, J., Fisher, K. R., Whittle, E., & Trollor, J. N. (2018). What can the experiences of people with an intellectual disability tell us about the desirable attributes of a mental health professional? Journal of Mental Health Research in Intellectual Disabilities, 11 (3), 183 – 202. https://doi.org/10.1080/19315864.2018.1469700</bibtext> </blist> <blist> <bibtext> Whittle, E. L., Fisher, K. R., Reppermund, S., Lenroot, R., & Trollor, J. (2018). Barriers and enablers to accessing mental health services for people with intellectual disability: A scoping review. Journal of Mental Health Research in Intellectual Disabilities, 11 (1), 69 – 102. https://doi.org/10.1080/19315864.2017.1408724</bibtext> </blist> </ref> <aug> <p>By Janelle Weise; Adith Mohan; Jessica Walsh and Julian N. Trollor</p> <p>Reported by Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib20" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib36" firstref="ref3"></nolink> <nolink nlid="nl3" bibid="bib19" firstref="ref4"></nolink> <nolink nlid="nl4" bibid="bib30" firstref="ref5"></nolink> <nolink nlid="nl5" bibid="bib23" firstref="ref7"></nolink> <nolink nlid="nl6" bibid="bib21" firstref="ref9"></nolink> <nolink nlid="nl7" bibid="bib12" firstref="ref10"></nolink> <nolink nlid="nl8" bibid="bib24" firstref="ref12"></nolink> <nolink nlid="nl9" bibid="bib28" firstref="ref13"></nolink> <nolink nlid="nl10" bibid="bib29" firstref="ref14"></nolink> <nolink nlid="nl11" bibid="bib34" firstref="ref15"></nolink> <nolink nlid="nl12" bibid="bib11" firstref="ref16"></nolink> <nolink nlid="nl13" bibid="bib18" firstref="ref17"></nolink> <nolink nlid="nl14" bibid="bib26" firstref="ref18"></nolink> <nolink nlid="nl15" bibid="bib22" firstref="ref19"></nolink> <nolink nlid="nl16" bibid="bib10" firstref="ref25"></nolink> <nolink nlid="nl17" bibid="bib14" firstref="ref43"></nolink> <nolink nlid="nl18" bibid="bib33" firstref="ref57"></nolink> <nolink nlid="nl19" bibid="bib13" firstref="ref60"></nolink> <nolink nlid="nl20" bibid="bib15" firstref="ref61"></nolink> <nolink nlid="nl21" bibid="bib31" firstref="ref66"></nolink> <nolink nlid="nl22" bibid="bib32" firstref="ref67"></nolink> <nolink nlid="nl23" bibid="bib35" firstref="ref68"></nolink> <nolink nlid="nl24" bibid="bib25" firstref="ref71"></nolink> <nolink nlid="nl25" bibid="bib27" firstref="ref72"></nolink> <nolink nlid="nl26" bibid="bib16" firstref="ref74"></nolink> <nolink nlid="nl27" bibid="bib17" firstref="ref75"></nolink>
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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Salutary Lessons from the Delivery of Mental Health Services to People with Intellectual Disability -- A Historical Perspective from Intellectual Disability Mental Health Experts in New South Wales, Australia
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Weise%2C+Janelle%22">Weise, Janelle</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0003-0783-5898">0000-0003-0783-5898</externalLink>)<br /><searchLink fieldCode="AR" term="%22Mohan%2C+Adith%22">Mohan, Adith</searchLink><br /><searchLink fieldCode="AR" term="%22Walsh%2C+Jessica%22">Walsh, Jessica</searchLink><br /><searchLink fieldCode="AR" term="%22Trollor%2C+Julian+N%2E%22">Trollor, Julian N.</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0002-7685-2977">0000-0002-7685-2977</externalLink>)
– Name: TitleSource
  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Mental+Health+Research+in+Intellectual+Disabilities%22"><i>Journal of Mental Health Research in Intellectual Disabilities</i></searchLink>. 2021 14(1):70-88.
– Name: Avail
  Label: Availability
  Group: Avail
  Data: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 19
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2021
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Mental+Health+Programs%22">Mental Health Programs</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health+Workers%22">Mental Health Workers</searchLink><br /><searchLink fieldCode="DE" term="%22Expertise%22">Expertise</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Disorders%22">Mental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Multiple+Disabilities%22">Multiple Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Normalization+%28Disabilities%29%22">Normalization (Disabilities)</searchLink><br /><searchLink fieldCode="DE" term="%22Delivery+Systems%22">Delivery Systems</searchLink><br /><searchLink fieldCode="DE" term="%22History%22">History</searchLink><br /><searchLink fieldCode="DE" term="%22Governance%22">Governance</searchLink><br /><searchLink fieldCode="DE" term="%22Policy+Formation%22">Policy Formation</searchLink><br /><searchLink fieldCode="DE" term="%22Financial+Support%22">Financial Support</searchLink><br /><searchLink fieldCode="DE" term="%22Advocacy%22">Advocacy</searchLink><br /><searchLink fieldCode="DE" term="%22Capacity+Building%22">Capacity Building</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Needs%22">Research Needs</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Australia%22">Australia</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1080/19315864.2020.1856243
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1931-5864
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Introduction: People with intellectual disability (ID) face barriers to accessing mental healthcare. Individuals who have had significant experience in intellectual disability mental health (IDMH) can provide insights into strategies to overcome these barriers. Methods: This historical investigation applied an interpretive descriptive approach using semi-structured interviews with fourteen IDMH experts. Thematic analysis was undertaken to explore the delivery of mental health services to people with ID since the 1960s. These themes were then analyzed to identify key lessons about delivering quality mental healthcare. Results: Key lessons suggest the need for: specialized IDMH services, clear policy and governance, including people with ID in the design and delivery of services, holistic and collaborative services, an equipped workforce, quality assessment and treatment, and ongoing research. Conclusions: A historical review of mental health services for people with the ID provided valuable insights into strategies that could be implemented to enhance mental healthcare for this important group.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2021
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1283424
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      – Type: doi
        Value: 10.1080/19315864.2020.1856243
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      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 19
        StartPage: 70
    Subjects:
      – SubjectFull: Mental Health Programs
        Type: general
      – SubjectFull: Mental Health Workers
        Type: general
      – SubjectFull: Expertise
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      – SubjectFull: Intellectual Disability
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      – SubjectFull: Mental Disorders
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      – SubjectFull: Multiple Disabilities
        Type: general
      – SubjectFull: Barriers
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      – TitleFull: Salutary Lessons from the Delivery of Mental Health Services to People with Intellectual Disability -- A Historical Perspective from Intellectual Disability Mental Health Experts in New South Wales, Australia
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