Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2014, 27, 273–288

The Training Needs of Staff Supporting Individuals Ageing with Intellectual Disability Stuart Wark*,†, Rafat Hussain* and Helen Edwards‡ *School of Rural Medicine, University of New England, Armidale, NSW, Australia; †The Ascent Group, Armidale, NSW, Australia; ‡School of Education, University of New England, Armidale, NSW, Australia

Accepted for publication 11 December 2013

Background The issue of ageing within the cohort of people with intellectual disabilities has been an increasing focus for research. However, the training needs of the staff who support them has not been subject of extensive examination. Materials and Methods A multiround Delphi project was conducted focusing upon the impact ageing issues have on the support provided by disability workers, and what training is required to address the identified areas. Results Three rounds of the Delphi identified twenty-six separate important issues. A thematic analysis identified five main themes including Generic Training Issues;

Introduction While the increasing life expectancy of people with intellectual disabilities has been identified around the world over the past few decades (Bigby 2004), a significant problem is emerging regarding how to most effectively deliver services to this cohort (National Task Group on Intellectual Disabilities & Dementia Practice 2012). For example, in Australia, there are no consistently applied intergovernmental policy guidelines, either within states or between the State and Commonwealth levels, specifically for people with an intellectual disability who are ageing (Bigby & Pierce 2008; National Disability Services 2012a). Complicating this situation in Australia is the fact that disability services and aged care services are provided by different tiers of government, state and federal, respectively. In effect, this separation mandates that an individual can have a disability or be ageing, but not be in both categories concurrently, and must choose between the models rather than being able to access additional aged care support when it becomes necessary (NSW Ombudsman 2009; COTA National Policy © 2014 John Wiley & Sons Ltd

Medical Issues; Emerging Ageing Issues Requiring Changing Support; Mental Health Issues; and Quality of Life. Conclusions The study identified a series of training priorities for staff assisting people ageing with an intellectual disability. It would appear possible for many training programmes to be developed and delivered with minimal cost impacts even within rural localities. Keywords: ageing, intellectual disability, rural, staff, training, workers

Office 2013). Both government and community-based organizations associated with the provision of ageing and disability support have struggled to successfully develop comprehensive policies and work procedures, and relevant models of practice for staff have still not been widely implemented (Bigby 2008). In particular, the training priorities and needs of workers who assist people with intellectual disabilities who are ageing is an area that is currently under-researched (McGhee & Dorsett 2011).

Ageing with an intellectual disability A person born with an intellectual disability eighty years ago would not be expected to survive past their second decade (Carter & Jancar 1983); however, people with intellectual disabilities are now living longer than at any time in history (Buys et al. 2008). Improved care, technology and a community expectation that people with a disability will receive appropriate medical attention have seen the life expectancy of a person with an intellectual disability increase dramatically (Haveman et al. 2009). The expansion of clinical knowledge and 10.1111/jar.12087

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specialist services has resulted in people surviving childhood illness and disease that would have proven fatal in previous generations (Ory et al. 1992; Lui et al. 2006), and individuals now live into adulthood and beyond even with severe disabilities (Crewe 1990; Hunt & Marshall 2012). This progress means that a person with a mild intellectual disability in Australia has a life expectancy that now exceeds seventy years (Strauss & Eyman 1996; Bittles et al. 2002), with an American study estimating the difference in lifespan between the mainstream population and a person with a mild intellectual disability to be only two per cent (Janicki et al. 1999). Similar statistics have been reported around the developed world since those findings (World Health Organization 2011; Sinai et al. 2012). If people who have a specific genetic disability such as Down syndrome, as well as those individuals with complex and severe associated disabilities, are removed from the total figures, the life expectancy of an Australian with an intellectual disability now approximates that of the mainstream population (AIHW 2000). For people with Down syndrome, there have been significant increases in life expectancy in the past hundred years, rising from around 10 years to approximately 60 (Glasson et al. 2002; Carmeli et al. 2004). Defining exactly when ‘ageing’ commences is difficult. It is a process that takes place over an extended period of time and varies between every person (Bigby 2004) and providing a specific definition of ageing for people with intellectual disabilities is problematic. While ageing should not be viewed as a unitary construct, many attempts to define it are framed in terms of a set chronological age. However, this approach has not resulted in a standard definition of ageing as there are no chronologically definitive and consistent physical, psychological or social phenomena associated with ageing that support the establishment of set ageing criteria in the same way that infancy or puberty can be so defined (Roebuck 1979). A number of different chronological ages have been proposed as defining the starting point of ageing for people with intellectual disabilities. While there is ongoing debate about whether there is actually a need to distinguish between individuals with intellectual disabilities and the mainstream population (Bigby 2004), ages such as forty-five, fifty-five and sixty have all been proposed as the beginning of ageing for this group of people (Gatter 1996; Janicki & Ansello 2000; Leveratt et al. 2005). Defining ageing for subgroups of people with intellectual disability, particularly those with

genetic disorders including Down syndrome which are linked to early onset of ageing-related problems (Torr et al. 2010), is particularly difficult.

Staff training Compounding many of these policy and practice problems is a significant lack of appropriate training for staff supporting individuals who are ageing with intellectual disability (Alborz et al. 2003). It has been argued that training for direct care staff is a crucial aspect of successful ageing in place for people with intellectual disabilities (Wilkinson et al. 2005). However, that study also noted that inappropriate or irrelevant training that fails to specifically address ageing issues can actually lead to worse outcomes than no training at all. It has been reported that many staff within accommodation services have extremely limited education or training in providing support to people with disabilities (Broadhurst & Mansell 2007). The disparity between the day-to-day work requirements of disability support staff and the actual training provided to them was highlighted over twenty years ago (Parmenter 1991). This trend is still continuing in many areas (DiGennaro Reed et al. 2013), contrary to the research that shows a correlation between appropriate training and desirable outcomes such as minimizing challenging behaviours (Campbell & Hogg 2008), improving employee’s psychological well-being and reducing personal ‘burnout’ (Chung & Harding 2009), enhanced communication between staff and clients (McMillan et al. 2000), and higher levels of individual engagement in daily activities (Mansell et al. 2008). Overseas studies have shown that training programmes developed without input from disability workers will not achieve the desired goals (Oliver & Head 1990; Whitworth et al. 1999), but a widespread absence of input from staff with respect to the content of their training and professional development programmes has been reported (McAllan et al. 2005). It has been specifically noted that gaps in current ageing with an intellectual disability research include staff training and models of care (Courtenay et al. 2010) with McGhee & Dorsett (2011, p. 74) commenting that there was ‘an urgent need to strengthen the evidence base in the area of training for frontline workers who work with older people with an intellectual disability’. Bigby (2004) noted that there needed to be education and training provided for staff to ensure that individuals ageing with an intellectual disability were appropriately supported and engaged. However, training within the © 2014 John Wiley & Sons Ltd, 27, 273–288

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disability sector has been predominantly targeted towards staff working with younger and middle-aged people, with the different issues associated with ageing with intellectual disability not featuring strongly (McCallion & McCarron 2004). It was reported that disability staff were generally untrained in areas of aged services including dementia support and palliative care (Fahey-McCarthy et al. 2009). A 2011 study in Ireland noted that staff cited a lack of training and knowledge specifically in relation to management of complex issues for individuals with intellectual disability and advanced dementia and that this omission had resulted in persons being moved from the community into a hospital or residential aged care placement (McCarron et al. 2011). Dowse, McDermott and Watson concluded that there was minimal training that met the needs of Australian workers assisting people ageing with disabilities (Dowse et al. 2009).

Current paper The objective of the research reported in this paper is to identify the key training issues for staff that support people ageing with an intellectual disability. Through the identification of what training is desired and required, appropriate education programmes can be developed and implemented. The research is part of a larger study into issues of ageing with intellectual disability. The main underpinning philosophy of the research is to gain the perspective of the actual support staff, rather than relying upon the potentially second-hand viewpoint of those who may be in predominantly administrative positions and removed from the day-to-day reality of providing personal assistance. There was a deliberate decision made to focus upon disability workers within rural areas, as it was recognized that there may be additional impediments to ageing with intellectual disability such as access to services, isolation and cost factors that may not be similarly evident within a metropolitanbased study (Parliament of Australia 2010; Morgan et al. 2011; Wark et al. 2013). To overcome the problem associated with determining exactly what constituted ageing, no set definition of ageing was provided to the participants in the current study. Each individual was instructed to determine on the basis of their professional experience whether the people with intellectual disabilities they supported were experiencing ageing issues.

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Materials and Methods Location The geographical base for this study, the state of New South Wales (NSW) in Australia, covers an area of 800 642 square kilometres (GeoScience Australia 2008). The study focused on those areas classified as rural, regional and remote by the Australian Standard Geographical Classification – Remoteness Areas system (Australian Bureau of Statistics 2007). This included all areas of the state except for the four major cities of Sydney, Newcastle, Wollongong and Gosford. This sector had an approximate population of 1.6 m (Australian Bureau of Statistics 2009).

Research methodology The Delphi method was selected for use in the current study as it was considered the most appropriate technique to facilitate potentially disparate responses from a range of participants spread across a large geographical base. The Delphi method is a structured process for collecting information from a variety of different individuals who have a particular expertise, interest or knowledge in a specific area (Franklin & Hart 2007). It has been used to evaluate and consolidate a group majority opinion on a specific issue, topic or concept (Linstone & Turoff 1975). It provides all participants with an opportunity to make unique observations and contributions before establishing group consensus positions on issues of key importance through a process of successive survey rounds. Given the study’s limited available resources, it was not feasible to utilize a face-to-face qualitative personal interview process as it would have been difficult to travel across the geographical area to obtain a suitably large sample with sufficient diversity and number of stakeholders. A pre-determined quantitative questionnaire model was examined; however, such a design had the potential to substantially limit the participants’ capacity to fully articulate their different experiences and viewpoints. Alternative formats such as online surveys that address some of the issues of geographical distance, while becoming increasingly popular (Dillman et al. 2009; B€ orkan 2010), were not considered feasible as many disability workers may have limited access to high-speed Internet. A paper-based Delphi method approach was therefore chosen as a mechanism to gain

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specific input from a diverse range of participants. This system of inquiry appears to conform with Davies’ recommendation that ageing issues in rural areas require the use of research methodologies beyond simple qualitative interviews or quantitative surveys (Davies 2011). This study was formally approved by Institutional Ethics Committee [institutional name and ethics approval number to be provided after blind review].

Participant demographics The participants were drawn from a total of fourteen different disability organizations, located in NSW Government Ageing, Disability and Home Care (ADHC) regions designated as being predominantly rural (Department of Ageing Disability & Home Care 2013b) and who provided either day programme or residential accommodation support. A request for participation was sent to non-government disability services in these regions, with the participants (n = 31) then independently self-nominating. The mean age of the sample was 47.0 years, and the length of time within the disability sector workforce varied from less than a year to over 30 years. Over 80% of the participants were female (26 females and five males). The much higher proportion of female participants may appear to point to a skewed sample, but the demographics of the sample were consistent with the wider disability workforce in Australia (Department of Human Services 2005; Lime Management Group 2006; Shaddock & Rose 2009). The majority of the participants (23 of 31) identified themselves as direct care workers, with eight indicating they had a joint direct care/management role. All but one of the participants had successfully completed relevant post-school accredited disability work training.

Determining consensus and importance The Delphi method is a process of successive survey rounds using a participatory framework aimed at consensus building that attempts to establish key important concepts or beliefs with which the survey participants are in general agreement (Franklin & Hart 2007). However, there are no agreed upon measures that determine the point at which importance and consensus are reached in a Delphi project (Hsu & Sandford 2007). To gauge the importance of various issues and the degree of consensus among Delphi panel participants in the current study, the analysis of data was based on

levels of dispersion including standard deviation from the mean and coefficient of variation, and measures of central tendency such as mean, median and mode (Hsu & Sandford 2007). Standard deviation and coefficient of variation were used to determine group consensus for each separate item identified by the panel. Consensus was defined prior to commencement as having occurred when the coefficient of variation fell between 0 and 0.5, and when the standard deviation for the item was equal to 1.0 or less. If an item met one but not both of these criteria, the range of scores for that item would be further analysed to establish if 80% of the participants’ scores fell within three consecutive scores on the seven-point scale. If the coefficient of variation exceeded 0.5 or the standard deviation exceeded one, and if less than 80% of the ratings fell within three consecutive scores, it would be considered that consensus was not established for that item. All items on which consensus was not reached would be returned to the participants for another round of the Delphi. Any item that did not meet these same criteria in this subsequent round would be noted as not reaching group consensus. The participant’s perception of each item’s importance was measured through the mean, median and mode scores. A mean of >4.5 was determined as the first measure required to indicate an issue was viewed as important by the panel. To ensure that the mean scores were not influenced by extremely low or high scores by a few participants, median and mode scores for each item was required to exceed 5 on the 7-point Likert scale for importance to be attributed to the item. If any item’s mean score was equal to or less than 4.5, or if the median or mode scores were below five, a secondary test of importance was included in which 80% of ratings would be required to be five or greater. If the mean was below 4.5, or the median or mode scores for any item were below five, and less than 80% of participants rated the item as ‘important’ or greater, it was deemed that the panel did not considered the issue to be important.

Rounds of the Delphi A multiround Delphi process was undertaken for this study comprising 31 participants. In round one, all the study participants were asked an open question: What do you think are the highest priorities in training for staff who assist individuals with an intellectual disability who are ageing? © 2014 John Wiley & Sons Ltd, 27, 273–288

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The verbatim responses to this question were collated alphabetically for round two. Some items identified in round one were largely identical, and in such cases, the researchers included the exact wording of one item that was considered to best represent the concept. Participants were asked to indicate if they generally agreed with the items in the collated list, and to identify any items that may have been inadvertently overlooked in the previous round. This round provided participants with the opportunity to also re-include an item if they felt it had not been appropriately captured. The items from both rounds one and two were combined to form the final list for the third round. In the third round, respondents were asked to rate the importance of each issue listed in the questionnaire using a seven-point Likert scale. While it was pre-determined that any item which did not meet the criteria for consensus in the third round would be included in a fourth round, ultimately consensus was reached for all items following the third round and the fourth round was not required.

Thematic analysis A thematic analysis of all items deemed important and on which consensus was reached was performed to examine whether any consistent thematic areas were evident. The thematic analysis was guided by the work of Charmaz (Charmaz 1990, 2006) and was not conducted with a goal of producing quantitative data, but was undertaken as a mechanism to identify the recurrence of any key concepts that may deserve further consideration and greater examination with respect to a structured training programme. The thematic analysis was composed of six stages, which included the following: 1. Reading all responses through to establish a general sense of meaning. 2. Responses re-read to clarify and confirm overall meaning of each item. 3. Where applicable, a meaning unit was identified for each separate item. In the context of the current study, a meaning unit was considered to be any string of text that encapsulated a single coherent concept such as ‘Medical Issues’. 4. Each meaning unit was considered and reviewed with respect to the other meaning units to ensure that a complete change of subject had occurred. 5. Items within each question were reassessed to identify any recurring meaning units, which were grouped together in a matrix format. © 2014 John Wiley & Sons Ltd, 27, 273–288

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6. A theme word or statement was generated for each meaning unit to state the underpinning and inherent shared meaning for the grouped items (Boyatzis 1998).

Results There were a total of twenty-six different issues identified in rounds one and two. In round three, the verbatim twenty-six items were presented alphabetically to the participants to rate on a seven-point Likert scale, and the results are presented in mean order in Table 1. Twenty-five of the twenty-six items met both the initial criteria for consensus. One item ‘OH & S (Occupational Health and Safety) and Manual Handling Training (how to provide appropriate physical support)’ fell in the defined coefficient of variation score range, but exceeded the standard deviation cut-off of 1.0. Scores for this item were then checked, and it was found that 80% fell into three consecutive categories. This item was therefore considered to have also met the criteria for consensus, and therefore, no further rounds of the Delphi were required. All twenty-six of the items met the required criteria for determining importance (see Table 1). The thematic analysis of the twenty-six responses revealed a number of distinct key concepts within the identified issues. These key concepts were considered to fit into five specific themes.

Generic training issues Participants specifically identified a number of items that were most appropriately categorized as being generic training. The issues identified by the participants appeared to be more aligned to mainstream training issues, rather than being specifically associated with concerns relating to ageing with an intellectual disability. Some of the generic training needs included items such as ‘Ability to educate the general public about client abilities’, ‘Comprehensive and accurate record keeping to assess changes over time’ and ‘Attitude training (patience, empathy, consistency, ethics)’.

Medical issues The participants identified a number of training issues relating to the individual health of the people they supported. Examples of the training priorities in this area included ‘Medical management’, ‘Dementia’,

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Table 1 Mean, median, mode, standard deviation (SD) and coefficient of variation scores (V) What do you think are the highest priorities in training for staff who assist individuals with an intellectual disability who are ageing? No. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26

Issue

Mean

Median

Mode

SD

V

Person-centred planning Medical management Understanding medication and its effects Understanding of changes associated with ageing Quality-of-life management Training in observation skills so that changes in client health can be detected early Behaviour management Attitude training (patience, empathy, consistency, ethics) OH & S and Manual Handling Training (how to provide appropriate physical support) Personal care needs Understanding of health issues Understanding of the ageing process and stages that people move through Understanding of different support needs at different stages of ageing Dementia Comprehensive and accurate record keeping to assess changes over time Generic aged care courses for disability service providers Understanding of emotional issues Dietetics (meal preparation, tube feeding, etc.) How to transition people between services effectively Time management Alternative communication methods Skills (such as counselling) in supporting other service users/ housemates in dealing with the ageing issues of their friend Advocacy to act as the voice for people who are ageing and seek appropriate facilities Diabetes Specialist equipment usage Ability to educate the general public about client abilities

6.62 6.58 6.58 6.54 6.50 6.50

7.00 7.00 7.00 7.00 6.50 7.00

7.00 7.00 7.00 7.00 6.00 7.00

0.57 0.64 0.64 0.71 0.51 0.71

0.09 0.10 0.10 0.11 0.08 0.11

6.42 6.35 6.35

7.00 6.00 7.00

7.00 7.00 7.00

0.70 0.69 1.09

0.11 0.11 0.17

6.35 6.35 6.31

6.00 6.00 6.00

7.00 6.00 6.00

0.69 0.56 0.62

0.11 0.09 0.10

6.27 6.23 6.15 6.15 6.12 6.04 6.04 6.00 5.92 5.92

6.00 6.00 6.00 6.00 6.00 6.00 6.00 6.00 6 6

6.00 6.00 6.00 6.00 7.00 6.00 6.00 6.00 6 6

0.72 0.86 0.67 0.73 0.82 0.92 0.72 0.69 0.89 0.69

0.12 0.14 0.11 0.12 0.13 0.15 0.12 0.12 0.15 0.12

5.88

6

6

0.95

0.16

5.62 5.54 5.42

6 6 6

6 6 6

0.75 0.65 0.95

0.13 0.12 0.17

‘Diabetes’, ‘Understanding medication’, ‘Training in observation skills so that changes in client health can be detected early’ and ‘Understanding of health issues’.

Emerging ageing issues requiring changing support There were a series of training priorities proposed by the participants that pertained to emerging ageing issues which necessitated a change in support practices, but which were not necessarily the result of any specific health condition such as diabetes. It was considered that these items were different in context to the theme of medical issues as they did not necessarily relate to a diagnosable condition but were instead generalized to

issues associated with ageing. Examples of these items included ‘Dietetics (meal preparation, tube feeding etc)’, ‘OH & S and Manual Handling Training (how to provide appropriate physical support)’, ‘Generic aged care courses for disability service providers’, ‘Specialist equipment usage’, ‘Understanding of the ageing process and stages that people move through’, ‘Understanding of different support needs at different stages of ageing’ and ‘Personal care needs’.

Mental health issues The need for additional training in the area of mental health was identified by the participants as an important issue and separately to the medical issues © 2014 John Wiley & Sons Ltd, 27, 273–288

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theme. Two of the main items were ‘Understanding of emotional issues’ and ‘Skills (such as counselling) in supporting other service users/housemates in dealing with the ageing issues of their friend’.

Quality of life The issue of training staff in how to better support people ageing with a disability to maintain their quality of life was identified by the participants. This need was noted in items that included ‘Person-centred planning’ and ‘Quality-of-life management’.

Discussion All twenty-six items identified by the participants in rounds one and two met the pre-determined criteria for importance. In fact, each of the items was very highly ranked with respect to importance. Every item had a median and mode score of six or greater. The mean score for the lowest ranked item was 5.42, still well in excess of the minimum cut-off point for importance. Conducting twenty-six separate programmes to address each issue is not a feasible option, so the thematic analysis indicated how some of these training issues can be grouped, and each of the themes is discussed below with specific recommendations as possible mechanisms to overcome some of the identified issues.

Generic training issues There were a number of issues identified within the theme of generic disability training. These items included ‘Behaviour management’ and ‘Alternative communication methods’. The participants also proposed a number of training needs that, while they impacted upon ageing factors, may be considered to apply equally to other stages in life beyond ageing. The identified items included ‘Attitude training (patience, empathy, consistency, ethics)’, ‘Training in observation skills so that changes in client health can be detected early’, ‘How to transition people between services effectively’, ‘Comprehensive and accurate record keeping to assess changes over time’ and ‘Time management’. As nearly all the respondents had completed postschool specialist training in disability work, it is initially concerning that so many generic training issues were identified as being a high priority. However, it is not clear from the responses whether the participants were nominating perceived gaps in the existing training or © 2014 John Wiley & Sons Ltd, 27, 273–288

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highlighting the aspects that were particularly valuable for workers. This distinction is an important one and should be considered within any future research into training issues. Nonetheless, the responses indicate that direct care staff recognize the importance of key disability service delivery principles that may gain further relevance when individuals start to experience aged-related issues. An example of this concept can be seen with the identification of observation and record keeping as key training priorities. These skills are vital if services are to accurately track and evaluate the progression of ageing-related issues, with successful future planning dependent upon the staffs’ ability to distinguish between existing disability-related issues and emerging ageing problems. This need was demonstrated in an Australia project that evaluated the Aged Care Innovative Pool Disability Aged Care Interface Pilot (AIHW 2006). Four of the pilot programmes used the Broad-Screen Checklist of Observed Changes (BSCOC) (Koenig 1995) to measure the clinical changes in a person with a disability as they age. However, the evaluation report noted concerns that there was low inter-rater reliability demonstrated by inconsistent scoring between staff and services (AIHW 2006). The low reliability may be a sign of poor training in observation and/or subsequent record keeping, and the current participants similarly recognized these issues as requiring remediation. In Australia, the separation of state and commonwealth (federal) government funding for disability care versus aged care currently limits people with lifelong disabilities from accessing additional aged care support. This results in individuals having to move from the disability service, which may have supported them for decades, to a new aged care model. The transitioning of people between services primarily occurs when ageing issues means that the disability organization can no longer effectively or safely continue to provide support. Disability services are generally not funded to provide either nursing level care or therapy options. Unlike models in Ireland and the United Kingdom, Australia does not have an extensive network of learning disability nurses, with the equivalent developmental disability nurse specialization being abandoned for the more encompassing title ‘registered nurse’ in the 1980s (Nurses Registration Board 1998). Similarly, there is a considerable lack of therapists or multidisciplinary teams in rural areas (Veitch et al. 2012). Once the disability organization is no longer able to provide an appropriate level of support due to increasing medical

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needs, the only option particularly in rural areas is to attempt to access generic aged care services. However, even if the individual is classified as eligible for mainstream ageing support, there is still a recognized shortage of residential care placements (Parliament of Australia 2007; Community Care 2011; Bernoth et al. 2012). Therefore, there is no guarantee of an available bed in the individual’s local community. This situation means that people with intellectual disabilities may be relocated to the nearest available bed, which may be in another town away from their friends and family (Mansell et al. 2006). This transition and change from a familiar environment can then have a considerable impact upon the individual, family, co-residents and support staff at both the disability and aged care agencies. The concept of attitude, values and ethics training within disability work is important, but it can be hard for both services and staff to accurately quantify. Shaddock, Hill and van Limbeek noted a linkage between personal value systems and the rate of ‘burn out’ in disability workers (Shaddock et al. 1998); however, there is not a significant amount of research or information about the relationship between ethical decision making and factors that affect the personal values of staff in the community services or social work sectors (Doyle et al. 2009). The lack of clearly defined ethical guidelines has been recognized within the sector in recent years, and a number of Codes of Ethics have been developed around the world (ASID 2011; National Alliance for Direct Support Professionals 2013). However, a board member of Australasian Disability Professionals, a professional association for disability support workers, indicated that the Australian Code of Ethics has not yet been widely distributed or incorporated into accredited training options across the country (Kevin Mead, pers. comm., 4 April, 2012).

There are a very limited number of training programmes designed specifically to address the issues of transition of clients between disability and other community services. Until such time as government funding allows for dual access to both ageing and disability support programmes, the most effective solution is for the ageing and disability providers, particularly in smaller towns, to proactively work together to plan for future transitions. This type of collaboration would assist both organizations to prepare for the process of transitioning a person from one service to another. It would also allow staff to be involved in planning how the individual with the disability and friends can keep in contact to minimize the distress experienced following separation. The ASID Code of Ethics was subject to national consultation and workshop reviews prior to its launch, and it was specifically written in a manner that would make it easily usable within accredited training courses (ASID 2011). Both this code, and other relevant models from around the world, could be easily adopted into training and workplace inductions as one simple mechanism through which some of the concerns of the participants regarding attitudes and ethics can be addressed. The thematic area of Generic Training Issues is one that requires further research to more clearly establish why they are priority training issues. The lack of clear policy and practice frameworks with respect to ageing and intellectual disability (Bigby & Pierce 2008) means that some models of training are developed in isolation and with minimal reference to consistent service design. Overall, it was not possible to determine whether the participants were identifying that the existing generic training structure is inadequate, with frontline support staff not being provided with the necessary base skills during their training, or if these are very important areas that require an ongoing focus.

Recommendations for generic training issues

Medical issues

The participants identified a series of priorities such as making accurate observations and record keeping that should be addressed within mainstream training programmes. An effective evaluation of the existing training system for disability support workers in Australia is required to clearly establish whether the current model is meeting these generic needs of support staff. Similarly, overseas training frameworks may be worth reviewing to confirm whether they are addressing these key areas.

A well-identified trend associated with ageing with intellectual disability is an increase in medical and health-related issues (Shooshtari et al. 2012). The participants identified the need for greater training and knowledge of health problems including generic ‘Medical management’, ‘Understanding medication and its effects’ and ‘Understanding of health issues’, as well as more specifically focussed learning and information programmes concerning ‘Dementia’ and ‘Diabetes’. The medical issues identified by the participants relate to © 2014 John Wiley & Sons Ltd, 27, 273–288

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generic health training needs, with none of the items appearing to pertain specifically to intellectual disability. While it is clear from the participants that a greater understanding of medical issues is required among staff, it is not apparent that specialized disability training is necessary. It is important to note that the participants identified that they required training with respect to understanding the effects of medication, as opposed to how to administer medication. Many workers are trained in the actual processes of administration of medications; however, the participants’ recognition of the need for training in the effects of the medication is an important distinction. Particularly in the absence of nursing practitioners, it would appear vital that direct care staff be trained to identify symptoms associated with adverse reactions to medications, accidental overdosing and the possible interaction between medications. Within mainstream aged care services, it has been found that the attitudes of staff to the people they support, as well as the residence’s day-to-day work practices, are more closely aligned to the level of medication given than any actual symptoms of dementia (Wills et al. 1997). Historically, medication has been administered inappropriately in some settings purely as a mechanism for control of difficult individuals (Chenoweth 1995), and it is deemed an illegal practice (Department of Ageing Disability & Home Care 2013a). However, Pro re nata (PRN) or ‘as needed’ medications are often prescribed by doctors to assist with such diverse aspects of ageing as pain management, epilepsy and challenging behaviours, with the staff responsible for the timing of administration. Access to appropriate training on the effects of medication would appear important for disability staff to ensure that the use of inappropriate chemical restraint, accidental or otherwise, does not occur within the ageing cohort.

Recommendations for training in medical issues Access to mainstream community-based training courses is one avenue through which disability workers can gain a greater understanding of health issues such as dementia and diabetes (Alzheimer’s Australia’s 2013; Australian Diabetes Council 2013). However, it would appear from the panel members that this approach may not be currently occurring. A pro-active approach by services in identifying relevant mainstream health training courses would greatly assist to address this training issue, rather than waiting for disability-specific courses that rarely arise. © 2014 John Wiley & Sons Ltd, 27, 273–288

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Training staff to better understand the role that medication plays in treating various ageing-related symptoms must be provided by an appropriately experienced and qualified practitioner. Accessing such expertise is not always easy, particularly in rural areas. A review of available training programmes in Australia indicates there are minimal options outside of metropolitan locations that assist staff to understand the effect of medications. Likewise, on-line training options in rural areas are often limited due to the lack of fast and reliable internet options, with access to high-speed broadband identified as the highest priority at the 2013 Australian National Rural Health Conference (12th National Rural Health Conference 2013). There would appear to be a couple of solutions to this problem. In smaller towns, the local pharmacist or chemist, either in private practice or at the hospital, may be able to provide generic information sessions to staff on the use and impact of some common medications. Likewise, a doctor or representative from a regional general practitioner body may be similarly able to train workers. Both of these options would appear a cost-effective and simple solution to the medication issue and could be extended through to other specific medical health issues as they arise.

Emerging ageing issues requiring changed support It has been recognized that as a person with an intellectual disability ages, it is likely that she/he will experience a decline in physical abilities (Beange et al. 1995) and therefore require more assistance with respect to daily living skills including general mobility, showering, toileting and eating. The decline in physical capacity results in a need for greater Occupational Health and Safety (OH & S) knowledge and specialist training in the use of new equipment. The participants recognized the importance of these issues with the items ‘OH & S and Manual Handling Training (how to provide appropriate physical support)’, ‘Personal care needs’, ‘Dietetics (meal preparation, tube feeding etc)’ and ‘Specialist equipment usage’. The issue that then impacts upon staff is the need to learn how to implement new protocols and operate new equipment as they support people ageing with intellectual disability. As the individual’s physical capacity decreases, new technologies and support systems are required to maintain quality of life and overall health. Studies have shown that the implementation of specialist equipment and assistive technologies can significantly improve the day-to-day

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functioning of a person, facilitating independence and the ability to continue to access his/her local community (Hammel et al. 2002). As an individual’s mobility decreases, equipment to assist with manual handling, such as hoists and slings, are often necessary to prevent worker injury (Jung 2004). There are also manual handling risks and associated preventative equipment utilized in assisting people to transfer from beds to wheelchairs or supporting them with personal care issues such as eating, showering, toileting and dressing. The process of implementing new technologies to address these issues can result in major changes to how services operate, and extensive training is required to support the staff to safely undertake these new processes (McDermott et al. 2012). Particularly in rural areas, there may need to be a large number of operational changes for a very limited number of individuals. The need to provide staff with both adequate resources and knowledge is essential if these new systems and methodologies are to effectively support the person to remain independent and to age successfully.

Recommendations for emerging ageing issues requiring changed support training Workplace health and safety for workers within the disability sector is an issue that is currently receiving attention in Australia at a state government level. A project aimed specifically at increasing organizational awareness of safety issues and ensuring workplace health for workers recently commenced across New South Wales including a large number of rural centres (National Disability Services 2012b). This programme has grown out of a prior collaboration between representatives of government, non-government and National Disability Services (NDS). A working party was established to examine the various legislative requirements that disability services operated under and, in particular, the discrepancies that existed between the state’s OH & S laws and the 1993 Disability Services Act. This first project found particular need for resources in areas such as manual handling (National Disability Services 2009), and these findings formed the basis of the training being provided state-wide. This project started after the conclusion of the current study, and it would appear to be at least partially addressing the training needs identified by the participants in the current study. However, the need for this training will continue to remain a priority, and ongoing support in this area would appear necessary both in Australia and potentially in other locations.

Mental health issues The participants identified two primary training needs associated with mental health and counselling in ‘Understanding of emotional issues’ and ‘Skills (such as counselling) in supporting other service users/ housemates in dealing with the ageing issues of their friend’. Some papers have reported that as people with intellectual disabilities start to age, there is an increase in the incidence of major mental disorders (Cooper 1997; Deb et al. 2001; Thorpe et al. 2001). However, it is often difficult for the staff to accurately identify the emergence of a mental health issue associated with ageing as opposed to any existing factors associated with the underlying intellectual disability and potentially long-standing challenging or idiosyncratic behaviours (Therapeutic Guidelines Limited 2005). With considerable demand upon the limited number of qualified mental health workers worldwide, particularly in rural areas (Parliament of New South Wales 2003; Thomas et al. 2012), disability staff often find themselves acting in the position of an ‘accidental counsellor’. They are required to provide emotional support not just to the person who is ageing but also to the other residents and even the wider family. Studies have shown that across Australia, there is a lack of information, knowledge and confidence in providing mental health support (Jorm et al. 2005; Sartore et al. 2008); however, there is currently very limited training available for disability staff in mental health or the provision of basic counselling support. It is not a desirable outcome to have untrained employees attempt to provide counselling to people experiencing mental health issues such as depression that may emerge during the ageing process. Any training should not be designed to replace mainstream psychological or mental health support services, but there is a need for disability staff to gain a greater understanding of both mental health and emotional issues, particularly if they are supporting people who are ageing. It is appropriate to note that other studies have examined issues associated with retirement from employment for people with disabilities (Bigby et al. 2011) and that there is the potential for mental health issues associated with this transition. While the current research did not specifically identify any issues associated with retirement, it is thought that this is possibly a result of the fact that the participants in the study were recruited from accommodation and day programme staff rather than employment providers. © 2014 John Wiley & Sons Ltd, 27, 273–288

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Possible solutions to these identified issues could be to provide training in the area of being an ‘accidental counsellor’ and mental health first aid. Training in which a basic understanding of counselling was incorporated would provide staff with guidelines and a framework to establish clear boundaries for their interactions with individuals who may be exhibiting signs of mental health distress. A recognition and understanding of the mental health issues is vital if staff are to correctly discriminate between new mental health problems, factors directly arising with the ageing process or issues arising from the existing intellectual disability. A training course available in Australia and the USA is Mental Health First Aid. This short duration programme has been developed to specifically train individuals to successfully identify and provide early intervention in the community-based support of people with mental illnesses (Mental Health First Aid 2007; Rosenberg 2011). The Mental Health First Aid course was found to be beneficial for staff, providing them with an increased understanding of mental health and improved levels of confidence in assisting people with a mental health issue (Kitchener & Jorm 2002, 2004). Some disability services in Australia have implemented this training for a proportion of their staff; however, priority has generally been given to those employees working with people with an already identified dual diagnosis (Kevin Mead, pers. comm., 4 April 2012). Widespread participation in this type of generic mental health training may be one simple method through which all staff can gain greater confidence and a knowledge base to assist them to support their ageing client group more effectively. Importantly, this course has also been provided free of charge across rural areas of Australia, thus facilitating cost-effective training for nonmetropolitan-based staff (Australian Rotary Health 2013).

some of their skills presents a number of problems for both disability services and their staff. One particular issue relates to the distinction between the provision of services focussed upon meeting emerging healthcare requirements and those that continue to address the individual’s social needs. The introduction of quality-of-life principles within the past decade has resulted in intellectual disability services moving away from the historical provision of predominantly health-based programmes towards an over-arching philosophy of social integration and inclusion. The provision of healthcare support is a component of the larger goal of obtaining a high quality of life, rather than being considered the main priority itself (De Waele et al. 2005). As a person ages, it is not unexpected for her/him to experience an increase in personal care needs and a decrease in some abilities. In such situations, there needs to be a focus on meeting these emerging health and safety issues. However, there also must be a balance to ensure that the meeting of these new care needs does not come at the expense of quality-of-life programmes. Ageing of people with intellectual disabilities can see a reversion to a healthcare dominated medical model of support, rather than maintaining the existing system of quality of life. As noted by De Waele et al. (2005, p. 238), ‘quality of care on its own, however, is absolutely not a guarantee for quality of life’. A person-centred approach is a process designed to support the family and disability organizations to ensure that the individual receives a service that is focussed on him/her, rather than just medical and health requirements. The NSW Government has recently mandated that all services must now adopt a person-centred approach to service delivery (Department of Ageing Disability & Home Care 2013c). However, in rural areas, there has not been any widespread government provided or funded training in person-centred approaches, and it is therefore easy to see why this area has been identified as a training priority in that state.

Quality of life

Quality-of-life training recommendations

The participants identified a number of specific training issues that pertained to improving the quality of daily life for the individual ageing with an intellectual disability. These included ‘Person-centred planning’ and ‘Quality-of-life management’. Providing individuals with a good quality of life is an integral component of all disability service provision. However, maintaining people’s quality of life as they start to age and lose

Person-centred planning, which provides a framework for ensuring that all activities and goals are based around the individual needs of the person (O’Brien & O’Brien 1998), is one avenue that can assist both disability providers and staff in reaching the right balance between quality-of-life activities and health needs programmes. At this point in time, there is no widespread training available for rural support workers

Mental health training recommendations

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in person-centred training in Australia, and it is clear from this study that such training is a priority. A recommendation for government to consider funding relevant courses in rural areas is therefore clear, particularly in the light of the recent changes to policy frameworks that mandate all NSW services to adopt a person-centred approach.

Conclusion The past century has seen a dramatic change to life expectancy as a consequence of improved medical knowledge, greater access to responsive healthcare services and better recognition of the rights of individuals with an intellectual disability. It is now becoming the norm for persons with an intellectual disability to out-live their parents and to experience similar age-related issues as the mainstream population. However, policy and practice frameworks to support this emerging cohort of ageing individuals has not been developed in unison. The current study has identified that training in a number of key areas including health management, equipment usage, quality of life and mental health is urgently required to successfully support workers who are assisting individuals ageing with an intellectual disability. A series of recommendations outline how it may be possible for many of these training priorities to be achieved successfully and economically through either modifications to existing disability programmes or by the adoption and adaption of generic training programmes. There is some excellent work being undertaken overseas (Larson et al. 1999; Hewitt & Larson 2005; Bogenschutz et al. 2010), however, further local studies into the effectiveness of training are also necessary to extend upon the existing research into the efficacy and relevance of training for disability workers within an Australian context.

Acknowledgements The authors acknowledge the contribution made by the Collaborative Research Network on Mental Health and Well-being in Rural Communities, supported by the Department of Industry, Innovation, Science, Research and Tertiary Education, Commonwealth Government of Australia.

Competing Interests The authors do not have any financial or non-financial conflict of interests.

Correspondence Any correspondence should be directed to Stuart Wark, School of Rural Medicine, Armidale, NSW 251, Australia (e-mail : [email protected]).

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