The more candles, the bigger the wish: Ageing with an intellectual (learning) disability

1. Presenter: Stuart Wark The more candles, the bigger the wish: Ageing with an intellectual (learning) disability Stuart Walk

2. Why am I here? I was very lucky to be awarded a 2012 Churchill Fellowship to look at the issues of ageing and palliative care for people with intellectual (learning) disabilities. My trip includes visits to Los Angeles, Chicago, New York, Dublin, London, Oxford, Cambridge, Edinburgh, Bath, Bristol, Cardiff, Birmingham and Keele. Estimated total travel distance : 22, 068kms.

3. Background • Personal History • BA (Hons) and PhD at the University of New England. • Worked in the disability field since 1993 in a variety of direct care, management, clinical and academic roles. • Currently employed at the School of Rural Medicine at UNE, but also maintain a permanent part-time position with a non-government disability organisation.

4. Where am I from? Scale Armidale to Sydney is approximately equivalent to Edinburgh to London

5. Where I am from?

6. What did I leave?

7. Overview of Seminar Rough Outline • History of disability support options in Australia. • Current disability legislation in Australia. • The emergence of ageing with an intellectual disability. • History of aged care services in Australia. • Our research into what is needed in Australia. • Current and Future research (and hopefully collaborations!) • Questions and feedback.

8. Please ask questions or comment at any point. I am very keen for this to be a learning experience for me as well, particularly around the local problems and solutions. I would love to hear about your personal experiences on what works and what could be improved.

9. Warning I will be discussing some issues around ageing and palliative care that could be confronting or disturbing for some individuals. Also, I will use the term ‘intellectual disability’ throughout – please internally translate this to ‘learning disability’ 

10. My underpinning philosophy to research

11. Disability Support in Australia: A (brief) History When NSW was first colonised in 1788, Governor Phillip was bestowed with the power to deal with, basically as he saw fit, people classified as “lunaticks and ideots”. The definition of what constituted a ‘lunatick’ or ‘ideot’ was unclear, with the existing medical definitions and classifications of the time often contradictory and confusing.

12. Governor Phillip and his immediate successors primarily placed individuals considered to be lunatics into the care of a relation or another person who was thereafter deemed to be responsible for them . However, a rise in the number of people who would now be diagnosed as having either an intellectual disability or a mental health issue led to the opening of a specific asylum facility in 1811.

13. This process began to change when the NSW Government passed into law the Lunacy Act of 1843. The goal of this act was for “the safe custody of, and prevention of offences by persons dangerously insane, and for the care and maintenance of persons of unsound mind”.

14. The 1843 Lunacy Act was replaced by the 1878 Lunacy Act. The definitions within the 1878 Act were modified, replacing the distinction between ‘persons dangerously insane’ and ‘person of unsound mind’ with the simpler ‘insane person’ and ‘idiot’. While the actual terms would be considered offensive now, these new definitions largely mirror the current separation between a person who has a mental health issue and someone with an intellectual disability.

15. The predominant form of support for people with intellectual disabilities remained institutionalisation under both the 1843 and 1878 Lunacy Act; however, in1878 it became more difficult to admit an individual to such care without appropriate medical review. It was not until the mid 1900s that a significant shift away from the highly segregated large congregate models of asylum care began to take place.

16. This movement was largely driven by parents who, faced with the option of either coping on their own or placing their child into an institution potentially housing thousands of other people with high support needs, started banding together to form local community based organisations. This same model of community based organisation was replicated across Australia.

17. The rise of these new organisations saw a movement in the 1970s away from larger institutions towards smaller hostel models that generally housed between twenty and one hundred people. Other services, such as specialist schools, employment opportunities, early intervention programs and day activity centres, followed. A new style of support, with a focus on education, training and individual development, started to compete with the prevailing medical model.

18. The release of the 1983 Inquiry into Health Services for the Psychiatrically Ill and the Developmentally Disabled report, commonly knownasthe Richmond Report, provided an impetus to improve services to people with disabilities, to modify the way services were provided to people with disabilities, and to enhance the wider community’s understanding of issues facing people with disabilities.

19. The Richmond Report was a catalyst in achieving the next major change in service delivery for people with disabilities through the introduction of the Commonwealth Disability Services Act in 1986 and the NSW Disability Services Act in 1993. These Acts facilitated the development of clear policy directions that moved people away from institutionalised care and towards community integrated housing models.

20. Current Disability Legislation in Australia In Australia, disability support is provided across three separate levels of government (local council, State and Commonwealth). Even within these levels there are further delineations of assistance, with different government departments responsible for different aspects of support.

21. The Bureaucratic Divide • The Commonwealth Government is responsible for Employment Assistance Programs. • The State Government is responsible for accommodation and day programs. • Local councils provide community based assistance including respite and some day activity options.

22. However it is not so clear cut. As an example: A child with a disability is assisted by the State Government Department of Health until age 5, then the Department of Education until age 18, and then the Department of Human Services. If the person requires therapy assistance (for example), they may receive support from multiple government departments simultaneously (or not at all depending upon the entry criteria and availability of therapists). The Resulting Mess

23. Personal therapy equipment (such as communication devices) are considered the property of the government department and therefore do not move with the individual when they transition to a different service. This is all for a very simple case; it naturally gets even more convoluted if the person has a dual diagnosis of mental health, drug and alcohol etc.

24. A person born with an intellectual disability eighty years ago would not be expected to live past their second decade. People with intellectual disabilities are, however, now living far longer. A combination of factors including improved care and health technology has seen the life expectancy of a person with an intellectual disability increase dramatically. The progress in health and allied care meant that people with a mild intellectual disability now have a similar life expectancy to that of the mainstream population. Assisting people with disabilities to age successfully is now a major priority within the community services sector in Australia. The Emerging Issue: Ageing with an intellectual disability

25. The Current Problem A major issue has emerged in how to most effectively assist people with an intellectual disability to age successfully. In Australia, there is a separation in terms of both legislation and overarching government structures with respect to the provision of support for people who are ageing versus people who have an intellectual disability. This adds yet another layer of complexity onto the already confusing disability support system.

26. Under the current government systems, residential ageing support services are provided predominantly by the Commonwealth Government, while residential support for people with disabilities is provided by the State Government. Not surprisingly, both sides are therefore trying to push the cost of supporting people ageing with an intellectual disability onto each other.

27. A (Brief) History: Aged Care Services in Australia As with people with disabilities, the early years of colonial Australia saw the provision of care for the aged predominantly being undertaken by their relatives and friends. The aged care support system for individuals without a family network to assist them has been historically based upon government run hospitals and institutions

28. In 1901, Federation saw the introduction of national legislation regarding aged care. The division of care for the ageing was split with the Australian Government responsible for paying pensions and subsidies to aged care facilities while the states were responsible for managing the health care of ageing people through the hospital system

29. Currently, people who are ageing in place (being supported to remain at home by community-based workers) are supported by differing government departments to those who have moved into residential aged care facilities.

30. Community-based aged care support guidelines specifically excludes anyone with a disability who is already receiving accommodation support. This distinction is based upon the premise that the individual will be ‘double-dipping’ and receiving Commonwealth funding for support that should be provided by the State funded disability provider.

31. However, this distinction actually means that people with disabilities who are ageing are effectively excluded from receiving home care support as their individual needs change. This results in premature admission to residential aged care facilities.

32. We know we have a problem. But how do we know what is needed to make a real difference? There is limited research in Australia that has directly asked the support workers, the actual people doing the work, what the main problems are, and what could be implemented to support the provision of services to people ageing with an intellectual disability. But what is needed?

33. Lead-In Research The purpose of our recent research at the University of New England was to ask the workers what they thought were the biggest impacts upon people ageing with an intellectual disability in rural NSW, and what could be done to fix them. The participants in the study were drawn from 12 different services providers (a variety of small, medium and large) across regional, rural and remote New South Wales.

34. Methodology The current study used a Delphi Survey tool. In simple terms, a Delphi research model proposes one or more very open ended questions and requests that each participant write down as many answers as they think are relevant. The survey is done anonymously, and every person can indicate their agreement or disagreement with the proposed issues of the other participants.

35. Methodology Continued The answers from all participants are then collated together, and re-presented to each individual for further consideration. This process continues until agreement is reached within the group upon what issues are important. Once the issues are accepted by the group as being appropriate, each participant is asked to rate the issues on a Likert-scale (one being irrelevant and seven being critical). All of the participant’s responses were again collated to determine which issues they considered the most important.

36. The Survey Questions The Participants were initially asked 6 key trigger questions; • What do you think are the main issues or problems that a person with an intellectual disability will face as they age? • What are the main signs of ageing that you have seen in people with intellectual disabilities (i.e. physical health issues,, social impacts, emotional issues, mental health issues)? • From an individual staff perspective, what are the main issues you experience in providing support to someone with an intellectual disability who is ageing?

37. The Survey Questions 4. What do you think are the main issues facing the families and friends (including co-residents) of someone with an intellectual disability who is ageing? 5. What do you think are the main issues or problems facing a rural organisation that provides support to someone with an intellectual disability who is ageing? 6. What do you think are the highest priorities in training for staff who assist individuals with an intellectual disability who are ageing?

38. Results There were a total of 134 different issues identified by the participants that were deemed important by the Delphi Panel, and for which consensus was considered to have been achieved.

39. Results Continued A thematic analysis of the results revealed key areas of concern around: • Funding • Access to Services • Increasing Care Needs • Training and Knowledge • Ageing Carers’ Support • Quality of Life

40. Results Continued Time restraints prevents too much specific discussion around the results, however I can provide links to some papers that outline the findings in more detail. However a series of recommendations were generated from the study that were aimed at achieving practical and cost effective solutions to assist people ageing with intellectual disabilities, their carers (both paid and unpaid) and their friends.

41. Recommendations The other primary recommendations from the study focussed on a series of actions that can be undertaken with minimal cost implications for any specific group and are not contingent on substantial future government funding decisions. The focus of these recommendations is upon interventions and models of support that can easily be implemented and replicated within rural and remote areas.

42. Recommendations 1-2 Key Recommendation 1 – Mandatory Minimum Qualifications For the primary disability services funding body to work with peak bodies in order to establish a clear process and defined time-line for the introduction of mandatory minimum qualifications for all people working within the disability sector. Key Recommendation 2 – Appropriate Accredited Training Options For disability organisations and Registered Training Organisations (RTO) to carefully consider both the content of the units and the choice of electives within the accredited training that is provided to support workers. In particular, a focus on the identified priority areas such as time management, observation skills, personal attitudes and ethics, record management, behaviour management and alternative communication methods would be highly appropriate.

43. Recommendations 3-5 Key Recommendation 3 – Funded Disability Work Skill Set That the state and commonwealth governments fund the provision of the disability work skill set People with a disability who are older as a proactive approach towards addressing the emerging problem of proving appropriate support for ageing clients. Key Recommendation 4 – Joint Training Agenda That the major ageing and disability peak bodies develop a joint training agenda to address common educational needs as a means of initiating greater interaction between the two sectors. Key Recommendation 5 – Better Networking That disability organisations be proactive in establishing better networking models with local specialists such as medical practitioners, allied health professionals and pharmacists as a mechanism to raise awareness and understanding of the issues associated with people with an intellectual disability who are ageing.

44. Recommendations 6-8 Key Recommendation 6 – Greater Collaboration That aged care and disability service providers who are located in close proximity collaborate with respect to shared attendance at relevant sessions of their respective induction processes. Key Recommendation 7 – Mental Health First Aid That all staff, both direct care and management, participate in the Mental Health First Aid training currently offered across NSW. Key Recommendation 8 – Accidental Counsellor Training That disability service providers and Registered Training Organisations work together on the development, selection and modification of accredited units within the Certificate III and IV in Disability to successfully incorporate ‘accidental counsellor’ training.

45. Recommendations 9-11 Key Recommendation 9 – Mandatory Annual Training That all staff complete a mandatory annual update to their training to ensure competency in using workplace technology, including manual handling equipment and specialist medical equipment. Key Recommendation 10 – Future Planning Workshops That the relevant industry bodies and disability organisations make representations to state and commonwealth governments to obtain funding for groups such as Carers Australia to conduct workshops across NSW for families to assist them in their future planning. Key Recommendation 11 – Quality of Life Training That disability organisations, industry bodies and state and commonwealth governments collaborate to ensure that all rural services have access to Quality of Life (QoL) training.

46. Current Research A team of researchers from the University of New England and University of Sydney have combined with non-government aged care and disability organisations across two states (NSW and Queensland) to conduct a study of ageing with an intellectual disability. The focus of this study is comparative, looking at the experiences of people ageing both with and without a lifelong intellectual disability , across rural and metropolitan locations, and in different jurisdictions. Preliminary results are going to be presented at the IASSID Asia Pacific Conference in August.

47. Future Research? One of the goals is of my Churchill Fellowship is to establish linkages across the USA, Ireland and the UK so that we can look at developing some collaborative research projects that examine the experiences of individuals ageing with an intellectual disability across different countries. From there, we can hopefully start to define exactly what is working well, and what impediments may be able to be overcome.

48. Any easy questions? Best Contact Details • Email : swark5@une.edu.au