Supporting People with Intellectual Disability to Age Well: What are the Challenges

1. Supporting People with Intellectual Disability to Age Well: What are the Challenges • Professor Christine Bigby • Living with Disability Research Group • La Trobe University, Melbourne, Australia • c.bigby@latrobe.edu.au

2. Outline • Background – changing demographics a new group of people who are ageing • Active aging as a framework for thinking about the issues • Identifying challenges that arise from characteristics of people aging with intellectual disability • A look at some policy and practice issues associated with aging – • Health • Support with everyday living - aging in place • Retirement

3. Older people with intellectual disability – a new group who needs services • First sizeable cohort of older people with intellectual and multiple disabilities • Increased longevity plus larger cohorts (baby boom generation) • 1931 average age of death 22 • Now comparable life span to the general population for people with mild to moderate intellectual disability • Life expectancy of people with Down Syndrome doubled from 26 years in 1983 to 49 years in 1997 • Differential for people with severe and multiple disabilities • In Australia people with mild, moderate, and severe levels of impairment expect to live for 74.0, 67.6, and 58.6 years respectively compared to a population median of 78.6 years (Bittles et al. 2002). • Aged over 55 years - approx 6% of service users (0.4% of 55 + population) • Similar in Taiwan? • Asia- Pacific region – increased aging population (Janicki 2009) Taiwan est 10% 65 + • Increasing number of people with intellectual disability 71,012 to 91,004 between 2000- 2007 (school age and young adults, largest group 18-29) (Lin & Lin, 2011) • Est 3% (4,277) over 60years (1.9% 60-64 years, 2.49% 65 +) marginal increase • 10 -15 year less life expectancy for people with intellectual disability • Underestimates likely – not registered or known (Lin, JD, 2009)

4. WHO - Policy directions - Active ageing - applicable to people with intellectual disabilities ‘process of optimizing opportunities for health, participation and security in order to enhance quality of life as people age’.(WHO, 2002) • UN principles of rights of older people • Independence, Participation, Care, Self fulfilment, Dignity   Focus on three core pillars • Health • Participation • Security - care when necessary based on autonomy, dignity Similar to disability policy -emphasis on rights, participation, choice, inclusion • Underpinning principles to policy • Life course perspective - preparation in early parts of life course. • Participation in all facets of community not just work • Inclusive - not just younger and fitter old • Multiple levels, individual, community/organisational, society/policy, • Top down policies but also bottom up initiatives • Take account of diversity and culture

5. Multiple determinants of Active Ageing Importance of context - shape experiences of aging, and help to identify type of strategies needed to support ageing well. E.g. Australian key issue separation of aging and disability service systems – federal and state responsibilities – may not be an issue in Taiwan. Sense of family responsibility stronger in Taiwan than Australia

6. Applying ideas to people aging with a disability – • Increased life expectancy in last 30 decades – much knowledge - little translation to health and social care policy or practice (Bigby, 2012; Lin et al, 2011) • Ageing from disadvantaged position • Complicating and complex personal/ individual factors: • high health care needs - genetics - premature aging, associated health conditions • intellectual impairment, need support to exercise choice and participate • Social environment of exclusion • occupy a distinct social space - family, peers and paid staff • loss of parental support in mid life • barriers to participation, attitudinal, structural factors • few in employment – low socio-economic status • Behavioral - poor life styles vis exercise, diet, poor access to health care or advocacy Diversity as a group – life experiences, young old, frail aged Aging in shared places –for those institutions or groups homes high reliance on shared accommodation as age – aging from within a system

7. Policy Challenges Australia and Taiwan? • Policy vacuum and unprepared systems - Where should costs and responsibilities lie • How do service systems interface – health, disability, aged care • Disability system • Few specific policies - ad hoc – particularly retirement – aging in place – dementia care • Lives and services fragmented into sectors by funding mechanisms – day, accommodation, employment • Older family carers – lack of accommodation options hard to plan ahead • Aging in place when home is a group home or institution - States responsibility • Retirement from supported employment - Commonwealth responsibility • Little expertise about aging– disability workers wariness of aged care services • Difficulty managing health issues – not trained in health care focus on support • Aging and health care systems • Systemic barriers – access based on age, often disadvantaged by lack of family /advocates • Access - Issues of double dipping – are people aging or disabled or both? • Quality issues, knowledge /expertise • Limited knowledge of intellectual disability • Assumptions of health staff, knowledge/expertise • Lack of decision making protocols at service system interfaces - rushed – bewildered-inappropriate

8. Relatively poor outcomes for older people with intellectual disability • Loss of middle age – focus on primary care issues and framed ‘older carers’ issue • Disconnection with policy aspirations earlier in the life course - inclusion and participation • Retirement a risky proposition • limited opportunities and visions • loss of social connections and meaningful activity • Misplaced in residential aged care - no options if parent dies or failure of group home to adapt [yet younger and stay for longer than other residents] • Little autonomy and choice - busy lives but not chosen – unrealised goals • Disjointed fragmented lives - no holistic approach across life domains • Difficult and delayed pathways to diagnosis and appropriate health care, especially dementia • Reduced social networks as age – loss of family and peers, greater chances of no one to advocate • And for Disability Service system staff – anxiety about health and aging

9. Crucial questions -adjusting to change • Many needs of older people with intellectual disability are similar tothose of the general aged population and may be met relatively easily by mainstream health and aging services. • Some needs will be different, may occur at an earlier age, or may have to be met in a different manner or with a unique set ofexpertise that is not applicable to other older people (Janicki et al.,1985). • Related Policy and System-level Questions thatneed to be addressed: • What needs of people aging with intellectual disability can and should be met by mainstreamaging and health care systems? • How can the capacity of mainstream aging and health care systems to meet theneeds of older people with intellectual disability be developed and supported? • What needs do older people with intellectual disability cannotbe met by mainstream services, and require additional or specialist services from the intellectual disability system? • How should services—whether mainstream or disability specific—be resourcedand delivered in a way that takes into account (a) equity between people with intellectual disability with age-related needs who have differential access to disability servicesand (b) equity between older people, in general, and people aging with intellectual disability ?

10. Health associated issues - Normal aging • Biological aging • Gradual decline in organ capacity, body functioning and performance • Universal, natural, gradual, unidirectional • Varied by genetics, lifestyle, social and environmental factors • Reduced stamina, less efficient circulation, sensory changes, muscoskeletal changes • Increase in chronic disease after 75 yrs • People with intellectual disability have similar health related conditions • Treatable, arthritis, high blood pressure, heart disease, sensory impairment • Most common life threatening, cardiovascular disease, cancer, thrombosis, diabetes. • Study in Taiwan similar findings – main reasons for older people using health services, similar to other older people, circulatory, digestive and muscoskeletal (40%)

11. Health related differences – higher risks • Early onset menopause • High risk osteporoious • People with Down syndrome age related disorders early age – higher probability of dementia • People with cerebral palsy, poor health, early onset decline mobility and functional performance onset of pain • Higher rates of hypothyroidism, cerebrovascular disease, epilepsy, Parkinson's disease. • Difficulty recognising and communicating symptoms • Reliance on staff to recognise and report • Low use of health screening - • High risk of polypharmacy • Lifestyle issues, sedentary, obesity • Taiwan study institutional group underweight increased with age

12. Health system experiences • High rates undiagnosed, untreated health problems • Assumptions – just down to aging, or dementia without investigation • Staff in disability services lack confidence in aging health care issues • In Taiwan less than half institutions have nurses, few occupational therapists and physiotherapists • Older people with intellectual disability higher use of outpatient hospital services in Taiwan compared to other older people (Hsu et al., 2012) • Institutional managers little confidence in care for older people (Lin et al. 2011) • Key areas of need identified • Medical services, physical exercise, nutrition, disease prevention and management

13. Addressing Health Needs Health education family and disability staff Heightened family and staff awareness potential health issues avoid assumptions all change just normal age related • Accurate recording of changes • Understanding the progression of dementia • Preventative actions - regular health checks and screening Full medical evaluations if any doubt – second opinions Maximum use of health promotion activities – lifestyle, diet advice Staff or others as health advocates Professional education of health professionals Education for people with intellectual disability about ageing

14. available to down load http://www.latrobe.edu.au/health/about/staff/profile?uname=CBigby

15. Aging in Place – Provision of day to day support - Immediate and longer term issues Parental Carers • Lifelong commitment to family caring • Reduced caring capacity as parents age • Support to care as long as able/choose - respite - in home support • Preparation and planning for transition • Replacing parental roles –caring for and caring about • Reduce anxiety -parent - person with disability, family • Avoid trauma of crisis and unplanned transition to inappropriate support • Reduce long term need for support • Maximise use of family capital for long term support

16. Thinking about future plans - diverse family situations • Family constellation – other caring responsibilities and network of support • Degree of impairment of adult • Adaptation of family to caring ‘just getting on with the family business’ • Relationships of interdependence – parent and adult • Consistently- anxious re future, nature and quality of care • Availability of alternative non family accommodation options • Relationship and attitude to service system (Taiwan less use services rural and lower socio-economic groups) • Outreach and support necessary - to engage and stimulate preparation

17. Factors from practice research Families are a Poor fit existing system • Ill defined, non high or urgent needs, may not request support • Hard to engage -need for outreach • Relationship & trust supports engagement and change • “confidence and continuity” • Parent value – concrete practical & emotional support • Long term, intermittent, variable involvement Engage with multiple systems, interfaces and potential pathways • fragmented services each has narrow focus • not attuned to broader issues or disability perspective don’t see possibilities -not engaged with the future • Family focussed adult work • Dual focus older parent and adult child • Interdependence – negotiating conflicting needs • Importance of demonstrating and rehearsing possibilities • Working around parents and or including other family members

18. Future housing and support options • Disability system – group homes, hostels, supported independent living • New housing and support initiatives (Housing Trusts) allow family contributions to cost of ongoing care -shared equity- arms length from govt regulations • Network Building, small scale local community parent governed initiatives (Lifeways, PIN)

19. Aging in place in group home or other form of accommodation • Longer term strategies • Attention to design • Strategic location • Resident selection • Strategic partnerships with aged care facilities • Limit of adaptation: resources, impact on other residents, skill base, type of support • Where to: models - specialist facilities, generic with consultation and support, clustering in generic • How many moves? Maintaining a sense of belonging, continuity and significance; • Misguided and misunderstood notions of aged care and what’s normal

20. Is Residential Aged Care Appropriate? • It Depends • Judgements based on perceived deficits in one or other system. • Advantages described as • 24-hour support, nursing care, access to other specialists. • Better response to health and physical wellbeing for those with daily or complex health support. • Best option though not ideal for those not frail aged with complex health needs • Most appropriate • older and require the additional services of that system, for example, daily or 24-hour availability of nursing care. • Disadvantages • quality-of-life terms, interpersonal relations, loss familiar surroundings, • the lack of knowledge by staff of specific disabilities • reluctance to accept those who are different • resident composition and attitudes

21. Retirement and retaining a sense of purpose and social - but a risky proposition Aging of workforce in supported employment • by 2025, over half will be over the age of 50 (McDermott et al., 2009) • For services - declining productivity • For workers – stamina, health issues – right to retire • Anxiety about retirement ‘I’ve got my friends here (at work) you know I go home and I go to work that’s enough for me …no-one thinks of retiring…’ • Absence of alternatives • Ad-hoc retirement programs - resemble disability-specific day program and reflect existing service models – are they necessary? • Continued participation in meaningful activity, community and social connections core to aging well • Need for support to participate • Limited conceptualisation of what might be possible • Community groups for older people in the general community - willing but hesitant to include people with intellectual disability • Inclusion of older people with intellectual disability in community care centres in Taiwan?

22. Transition to Retirement Program - idea of Active Mentoring • An example of a model of supporting retirement, participation and inclusion • Demonstrated increased capacity of community groups to include older adults with intellectual disability • Enabled people with disabilities to participate in their local communities • Supported to join a community or volunteer group based on their interests • 30 older people (46 – 72 years, Mean = 57.4) to dropped one day at work and joined a mainstream community or volunteer group • Used adapted technologies of Active Support and Co-worker training

23. Transition to Retirement Model • Selling idea of retirement to older adults and families [clip] • Getting to know local communities – what are the possibilities • Constructing reality - • Person centered planning re interests [clip] • Locating and negotiating with a potential group, clip • Mapping new routine, travel, change to support clip • Recruiting and training mentors • Ongoing support and monitoring

24. Outcomes • 90% participated in a mainstream community or volunteer group 27 people attended for 6 months 21 still attend • Significantly more socially satisfied than comparison group members. • High levels of social interaction while attending the group, • Almost no examples of contact with other group members outside the group. • The model was largely very successful in bringing about sustained membership of community groups.

25. Aging - adjusting to change Adapt and resource disability services • outreach and support to families • articulate organisational policies and capacity • planned organisational response • Bridge gaps – between and within systems that prevent access and responsiveness • knowledge of aging in disability – knowledge of intellectual disability in aging /health • initiatives to support inclusion in mainstream services • creation of specialists with health system Development of partnerships and joint planning