Professor Christine Bigby

School of Social Work and Social Policy

LaTrobe University, Melbourne.

Australia

Key Issues and Research Priorities Affecting Social Outcomes for an Older Population

Differentiating Adulthood, Hearing and Acting on the Perspectives of Older People with Intellectual Disability.

Traditional thinking about aging“Useless, toothless, hairless and sexless”

Disease

Senility, loss of faculties

Sexless

Unproductive

Inflexible, unable to learn

Social withdrawal

Powerless, dependant

Serene

Ideas about disengagement

1980s ideas about

Double Jeopardy for people with ID

New ideas about aging

From ‘dependence and passivity’ to ‘activity and participation’

Active ageing‘Active ageing is the 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  

Similar to current disability policy - emphasis on rights, participation, choice, inclusion

Multiple Determinants

Challenge of starting from disadvantaged position

Social exclusion, work, learning, ‘distinct social space’

Complicating and complex personal/ individual factors: • genetics - premature aging, health conditions• intellectual impairment, support to exercise choice and participate

Behavioral - poor life styles - exercise, diet

Diversity as a group – life experiences, young old, frail aged

Health and social services - silos and discriminatory

Snapshots of life and support Australian studies

• Views of people with intellectual disability about their future

• What others say

• How fare on dimensions of participation, autonomy and choice

• What and how systems are responding

• What are the challenges for research

Victoria, Queensland, National

Older people with mild intellectual disability as direct informants

Disability service users predominantly

Proxies – staff, family members – interviews, focus groups

Larger surveys - nursing homes, group homes, generic day activity and leisure services for older people - completed by staff

References last slide

Purposeful ideas about their futureSeldom conceptualised as aging

Where to live

“I’d like to live with my girlfriend - that’s what I’ve got in the back of my mind. I’d like to have my own house with her. I’ve worked out how I can move .. but it’s not happening”.

Janine did not want to stay in the retirement village, because of the social ostracism she experienced, she said, “I’d like to live near Alison’s house. Because about 8 years ago I was renting there in the same street. I was happy there.

Rachel who lived with her elderly parents had a vision of what she wanted for her future. I’d like to move somewhere where there’s no stairs and somewhere where there are lots of shops and trains … I’ve had too much of here … Forty years nearly forty-one. I’d like to live near my sister – that would make it home.

What to do

Jane said ‘I want to go to England.. to see the Royal Family, I love the Royal Family... I could tell you about the children, the dates of their birthdays, anything like that’.

There’s not enough you can learn about computers. There’s an aged care thing at [suburb], where you can learn more about computers and the internet (employee)

I’ll just go and tidy my room up, do the housework and go in the garage and play with my train set ‘cause that’s my hobby (employee)

And with whom

When I retire I’ll go and help my father with the gardening. Then I’d go if I wanted to then I’d go and spend time with my brother at his place. (employee)

Fear of retirement – Rather carry on working - money, meaning and friends.

Oh, I’m not really, I’m sort of, I’ve got my friends here you know I go home I go to work that’s enough for me., I just try to keep going day by day. … no one thinks of retiring.

Risk of inactivity

You sit at home and you don’t do anything (employee)

Hate it. I don’t want to retire. (employee)

ParticipationDay support/ employment services central to lives

Important connections to friends and identity as a valued person

Regular activities based on routines

“Ooh yeah, I love it, then Wednesday’s I go bowling again, twice bowling. ..and Thursday’s we go shopping. .. last week we went in the country. ..and we go different places. ..Friday’s we go to the country for a drive. .. sometimes we go for a barbeque

Valued Roles – Known as an individual

“I’m the second one up in command. I’m the supervisor … He [staff member] said I was perfect …He leaves me in charge”.

“Julie [service user] idolises him, everybody loves him, he’s a grumpy old bugger he is, but he’s everybody’s favorite”.

Close and long-term friendships with other service users,

Josh plays bowls at the weekends in a bowling team with other service users They have travelled widely to participate in competitions. He said, “when we don’t bowl in the afternoons, we just go to Sizzlers or something. Gary and Trish

and all the others from bowls…”.

Potential for widened horizons Personal development & expansion of social world after death of parents – encouraged by siblings and others

Rod and Isobel married when they were in their 50s, several years after their respective parents had died

Often unforeseen

"of course they [his parents] never expected Rod to marry. That's the last thing in the world they ever imagined.“

‘I didn’t get out then like I do now’

She contrasted her life now with that she had lived with her mother and said, "she [mother] wouldn't let me go out. She didn't think I was as old as I am. She wouldn't let me be friends with anybody. She wouldn't even let me talk to anybody.”

“ Godfrey can go anywhere: travels on his own to work. Mother let him out very seldom. She let him go down to the shops in Bromely. Now he gets all round Melbourne."

Diminishing social networks Loss of key social network members/advocates as people age

High proportion ‘known well by no one’

• 62% no one act as advocate

• Only 21% family contact more than monthly

• 13% friend not person with ID

High level of mobility - loss of contact with service based friends as moved

"I think it was a real shock going from the hostel to the nursing home. All his

friends were in the hostel. I thought that they [staff from the hostel] would have

gone to see him and take his friends, Perhaps that was my fault“ (sister)

• Absence of advocates -implications for later life decision making

• Loss of social contact - implications for social isolation

Little autonomy and choice

Busy and Active Lives – not always own choices

What activities they could participate in

“I just keep on my own way … always doing things the way other people want me to do”

Vulnerable to change & control exercised by staff, family and organisations

“they always say you have to do what everybody else does. … well say when everyone else is dancing they say “you’ve got to dance” … And you do it … Yes”.

‘I went one day to the centre and George was sitting there and he was depressed out of his mind, you know, he was just sitting there, and he’d been misbehaving so he’d been kicked out of class sort of thing, you know, just sitting there on his own looking so depressed and so miserable’.

Decisions by others Jeopardise relationships and purpose

When to retire

I’d rather be doing stapling. I know that I want to do stapling again … I’ve told the supervisor so many times … I don’t like it here and I’ve got no friends here and I’d like to get paid again

All of a sudden they told me they didn’t want me anymore.

Where to live, who to live with, when to move

My sister-in-law’s got different plans for me. ..When I get old, really old and Donna [service provider] told me this too I have to go to a nursing home because they can’t take care of you.

So the accommodation manager told me [sister] to more or less start to look for alternative accommodation because they couldn’t manage in the house

She [hosiptal social worker] said he needs high level care and she gave me the form and she said I want you to go now and look at nursing homes

Inequities in decisions to move

Move driven by degree of change not needs per se

Similar objective needs different contexts

Unique combination of factors –

– -preexisting situation

– -degree of change

– -access to flexible additional resources

Variable capacity by person or family to challenge, delay or avert

Variable access to flexible resources by organisations

Misplaced in residential aged care Much younger than other residents in residential aged care

− 46.8% under 65 years v 4.1% under 65 years

Stay for longer− Uncompleted length of stay 5.6 years − 44% more than 8 years v completed length of stay 2.7 years

Lower rate of dementia 10% v 60%

Entry not particularly associated with ill health or severity of support

He probably could have gone somewhere else because he is fairly independent. It seems to me that families hit a crisis (when the person has to be hospitalized). They don’t know what to do so they decide on aged care as the only option but with good care the person often starts to feel better.

Staff perceive this group are different from other residents – struggle with social aspects of care.

− negative attitudes other residents

− lack staff expertise

Low capacity – Different population- Don’t need high nursing care

More restrictive environment

Others see retirement and aging as risky Staff and Family - Risk of inactivity

They’d prefer to go to work than sit at home and do nothing ….they communicate together with their own people…….It’s company so they can sit and talk to (family)

Pessimistic re possibilities

‘It’s all down to funding’ (chorus of voices in agreement).

he loves to go to work but what other services can he participate in when he stops doing what he is doing? … his place of work is here because we couldn’t find anywhere else for him (disability worker)

We had to pretend that this gentleman in particular has got dementia to get him into a day program for senior citizens….. There’s not a program out there they will just accept him into it (disability worker).

Continued segregation is a simpler alternative

I’m just wondering if you know councils or areas that do provide community groups for older people, these could also be using these facilities to provide something for the disabled. (family)

Yea, if they want to keep doing two days a week work to keep their mind going just packing things fine. It’s something of an interest for them. And the other days the government gives them an outing somewhere or whatever but free for them because a lot of people can’t pay for it on pensions. (employee)

Disjointed fragmented lives and services Separation - Service World - The Informal World •Little knowledge or communication passed across the boundaries. •No one aware of the complete picture of each older person’s life.•No one had a mandate to know the whole person or the right to do so.

‘I wouldn’t have a clue of what he’s got in money and I’m not interested in that money, that’s got nothing whatsoever to do with me.’ (friend)

‘we’re aware of boundaries with family, and we can’t do it we can only suggest it”

Limited shared problem-solving - Each made assumptions

“I think the family have got that sorted out. Least I think so”

Families uncertain of their role

Do you think we should ask a solicitor? but I don’t want to fight anybody, I just want to know what the rights are as far as the bureaucracy is concerned…I mean they can’t just say: “Look, he has to go this afternoon”, can they?

Disconnections

Views of providers and family vis aging people with intellectual disability

Policy and expectations Social participation, choice, autonomy not a key imperatives• Low expectations of inclusion• Default to separate programs for ‘different’ people

Disconnection with knowledge and practice from earlier in the life course

• Little attention to building/using social networks as an avenue for inclusion or advocacy

• No attention to technologies to prepare and support inclusion in mainstream– individual planning, buddy training, mentoring

• Assume ongoing separate support is necessary

• Complacency or contentment – with existing arrangements

• Little real knowledge only fear of aging

Unrealised goalsWhy can’t Janie Visit the Queen

A typical example is Janie who, as she points out, needs support to pursue her goal of going to see the Queen, “but I can’t do that on my own … I’m not allowed I’m not allowed to travel.” Despite her dream being acknowledged by both the service world and the informal world, “she wants to go to England” (family member), “she wants to visit the Queen and that’s part of her goals, her long term goals” (service provider), and having sufficient personal funds for herself and a carer to travel to England, it is not addressed.

Like the realisation of most goals for people with intellectual disability of all ages, Janie’s required hearing them, skilled effort, collaboration and advocacy. But for her like the other people in the study, there is no collaboration between her separate worlds, and advocacy does not figure strongly in either.

Problem Saturated

Service providers and policy makers - whose responsibility and who pays • changed or additional needs - resources • removing barriers to access mainstream systems esp health • adapting a disability system to retirement, aging in place, chronic conditions • less flexible - different issues from private homes • when if the balance shifts from ‘disabled’ to ‘aged’

Anxiety of parents about the future - when no longer carer and advocate• older carers phenomena - support to care and onus to plan

Little recognition of potential development or opportunities in later life • skills, interests, relationships • planning for certainty - 20, 30 40 years aheadLeap from adulthood to aging - forgotten middle age and its unique challenges

• generativity v stagnation, renegotiating relationships, careers.

Weak voices of people aging with intellectual disability - whose visions

Challenges for researchers Bring to the fore the perspective of people with intellectual disability - influence their own lives and those of family, service and policy makers

Research methods that can tap into views and give greater voice to people with intellectual disability

Program/ Practice research Mechanisms to build and sustain robust networks of strong and resourceful allies who can

• Influence formal care – ’otherwise its just leaving it up to them’ • Supplement care and social inclusion – ’doing what we can to include him’• Formal Roles and Support Decision making – ’they are one of the players’ ,

health guardian, next of kin, administratorAdaptation of practice from young adulthood employment to social participation in

community groups and volunteering for older people

Name and Investigate middle age - emotional and social elements

Strategies for reframing attitudes to ageing for people with intellectual disability to bring them more into line with the general population.

References Wilson, N. J., Stancliffe, R. J., Bigby, C., Balandin, S., & Craig, D. (2010). The potential for active

mentoring to support a positive transition into retirement for older adults with a lifelong disability. Journal of Intellectual & Developmental Disability 35, 3 211-214

Bigby, C., Bowers, B., & Webber, R. (2010). Planning and Decision Making about the Future Care of Older Group Home Residents and Transition to Residential Aged Care. Journal of Intellectual Disability Research

Webber, R., Bowers, B., Bigby, C. (in press). Hospital experiences of older people with intellectual disability. Journal of Intellectual and Developmental Disability, 35, 3, 155-164

 Bigby, C. (2010). A five country comparative review of accommodation support policies for older people with intellectual disability. Journal of Policy and Practice in Intellectual Disability. 7, 3-15

Bigby, C., Webber., R., McKenzie-Green, B., Bowes., B (2008). A survey of people with intellectual disabilities living in residential aged care facilities in Victoria. Journal of Intellectual Disability Research. 52, 404-414

Bigby, C. (2008). Beset by obstacles: A review of Australian policy development to support aging in place for people with intellectual disability. Journal of Intellectual and Developmental Disabilities, 33 (1), 1-11.

Fyffe, C., Bigby, C, McCubbery, J. (2007). Exploration of the population of people with disabilities who are ageing, their changing needs and the capacity of the disability and age care sector to support them to age positively. National Disability Administrators Group: Canberra

 Bigby, C., Fyffe, C., Ozanne, E. (2007) Planning and support for people with intellectual disability. Issues for case managers and other practitioners. London: Jessica Kingsley

Bigby, C. (2004). Aging with a lifelong disability: Policy, program and practice issues for professionals . London: Jessica Kingsley.

Bigby, C. (2005). Comparative programs for older people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disability, 2, 2 75-85.

 

 Bigby, C., & Balandin, S (2005). Another minority group: A survey of the use of aged care day programs and community leisure services by older people with lifelong disability. Australasian Journal on Aging, 24, 1, 14-18

 Bigby, C., Balandin, S., Fyffe, C., McCubbery, J., Gordon, M. (2004) Retirement or just a change of pace: An Australian national survey of disability day services used by older people with disabilities. Journal of Intellectual and Developmental Disabilities,29, 3, 239-254

Bigby, C., Ozanne. E., Gordon, M. (2002) Facilitating transition: Elements of successful case management practice for older parents of adults with intellectual disability. Journal of Gerontological Social Work, 37, 3/4, 25-44

 Bigby, C., & Balandin, S (2005). Another minority group: A survey of the use of aged care day programs and community leisure services by older people with lifelong disability. Australasian Journal on Aging, 24, 1, 14-18

 Bigby, C., Balandin, S., Fyffe, C., McCubbery, J., Gordon, M. (2004) Retirement or just a change of pace: An Australian national survey of disability day services used by older people with disabilities. Journal of Intellectual and Developmental Disabilities,29, 3, 239-254

Bigby, C., Ozanne. E., Gordon, M. (2002) Facilitating transition: Elements of successful case management practice for older parents of adults with intellectual disability. Journal of Gerontological Social Work, 37, 3/4, 25-44

Bigby. C. (2002). Aging with a life long disability: Challenges for the aged care and disability sectors. Journal of Intellectual and Developmental Disabilities, 24(4), 231-241

Bigby, C., Fyffe, C., Balandin, S., Gordon. M., McCubbery, J.(2001) Day support services options for older adults with a disability. National Disability Administrators Group, Melbourne.

 Bigby, C. (2000). Moving on without parents: Planning, transitions and sources of support for older adults with intellectual disabilities. New South Wales/ Baltimore: Mclennan+Petty/ P H Brookes. Knox, M & Bigby, C. (2007). Moving towards midlife care as negotiated family business: Accounts of people with intellectual disabilities and their families. International Journal of Disability, Development and Education 54, 3, 287-304

 Bigby, C. (1997). When parents relinquish care. The informal support networks of older people with intellectual disability. Journal of Applied Intellectual Disability Research 10.4, 333-344

 Bigby, C. (1997). In place of parents? The sibling relationships of older people with intellectual disability. Journal of Gerontological Social Work, 29, 1, 3-22

 Bigby, C. (1997). Later life for adults with intellectual disability: A time of opportunity and vulnerability. Journal of Intellectual and Developmental Disability. 22, 97-108

 Bigby, C. (1996) Transferring responsibility: The nature and effectiveness of parental planning for the future of adults with intellectual disability who have remained at home until midlife. Journal of Intellectual and Developmental Disability 21, 295-312