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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
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
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)
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
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
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
Policy Challenges Australia and Taiwan?Policy vacuum and unprepared systems - Where should costs and responsibilities lie How do service systems interface – health, disability, aged careDisability 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
o Older family carers – lack of accommodation options hard to plan ahead o Aging in place when home is a group home or institution - States responsibilityo 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
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
F limited opportunities and visions
F 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
Crucial questions -adjusting to changeMany needs of older people with intellectual disability are similar to those 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 of expertise that is not applicable to other older people (Janicki et al.,1985).
Related Policy and System-level Questions that need to be addressed: What needs of people aging with intellectual disability can and should be met
by mainstream aging and health care systems? How can the capacity of mainstream aging and health care systems to meet
the needs of older people with intellectual disability be developed and supported?
What needs do older people with intellectual disability cannot be met by mainstream services, and require additional or specialist services from the intellectual disability system?
How should services—whether mainstream or disability specific—be resourced and 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 services and (b) equity between older people, in general, and people aging with intellectual disability ?
Health associated issues - Normal agingBiological 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%)
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
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
F Medical services, physical exercise, nutrition, disease prevention and management
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
Support for Older People with Intellectual Disability in Group Homes:
A Manual for Group Home Staff
Copyright ©2012 Barbara Bowers
This Manual was prepared as part of a three year project (2010 2012)‐ on intellectual disability and ageing funded through
the Australian Research Council (ARC) Linkage Program.
The Project’s partners are Catholic Homes, Gill Family Foundation, National Disability Services Victoria, Office of the Public Advocate (Vic), St John of God Health Care and Wesley
Mission Melbourne.
The researchers are R. Webber (Australian Catholic University), B. Bowers (University of Wisconsin‐Madison) and C. Bigby
(Latrobe University).
Barbara Bowers, (0011) 1‐608 2635 1‐ ‐ 89 ‐ [email protected] Ruth Webber, (03) 9953 3221 ‐ [email protected] Christine Bigby, (03) 9479 1016 ‐ [email protected]
Group home staff often feel unprepared to support residents as they develop health
conditions. Finding the right resources to help sort out the problem, altering house
routines to accommodate changes, managing treatments and providing the
most effective support and supervision for people with health conditions is often
challenging.
Some health conditions can be difficult to manage. Handling multiple medical
appointments and understanding the condition and treatment side effects are all
issues that group home staff may feel unprepared for. As a consequence, people
with ID can be prematurely relocated to aged care.
The information in this Manual can help you
support ageing people with an intellectual disability to remain in their own home. The
Manual is intended to help you act as a more effective health advocate for the
residents you support, to better identify when medical attention is necessary and to assist you to gather the type of information
needed by GPs and allied health professionals.
Contents include: Normal Changes as a Person Ages Building Successful Partnerships Decision Making: Advocating for
Individual Involvement End of Life Care Understanding, Communicating and
Managing Common Symptoms Understanding and Managing Common
Conditions Accessing Resources
You can access a PDF version of this document, and
the accompanying Manager’s Guide, via the following ACU link: http://www.acu.edu.au/218634
or via the La Trobe website http://www.latrobe.edu.au/ health/about/staff/profile?uname=CBigby
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
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
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
F “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
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)
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
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
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?
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
F 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
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.
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
Fknowledge of aging in disability – knowledge of intellectual disability in aging /healthFinitiatives to support inclusion in mainstream servicesFcreation of specialists with health system Development of partnerships and joint planning
