Retirement and Older Adults with Intellectual Disability

An Active Mentoring

Support Model

Bigby, C., Wilson, N.J.; Stancliffe, R.J.; Balandin, S. & Craig, D

Retirement - Issues for disability services

A demographic shift toward a greater aged population in disability services (Janicki, 2009)

By 2025, over half of the workforce in supported employment services will be over the age of 50 (McDermott et al., 2009)

Despite declining productivity and health, in the absence of alternatives older people with intellectual disability continue working

Few funded mechanisms to support the transition to retirement

Faced with urgent changes in client support needs, disability services are forced to implement ad-hoc retirement programs

These programs tend to evolve into the “default” disability-specific day program and reflect existing service models

Retirement as a Risky Proposition

Part 1 of our study involved focus groups of service users, disability service staff, and family members.

These groups approach retirement for people with a disability with anxiety and perceive retirement as a risk to future well-being and participation.

Supported employees commented about retirement:

…you sit at home and you don’t do anything

…you’re sitting at home and you’ve nothing to do …you go downhill quickly

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…

RETIREMENT

Social Isolation

Poor Health

Outcomes

Loneliness

Social Exclusion

Risks to future well-being and participation

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Retirement

Stay home

Mainstream community groups for

retirees

Disability- specific

day program

Going out with

friends

Opportunities for participation in meaingful activities

Participation in Community Groups Voluntary Work

The alternatives we researched

Mainstream Community Groups: Issues

Who will provide

support?

How will support be effective?

Co-worker Training

Active Support

Mentors

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Getting there

Which Group? Where?

Negotiating participation

Trouble shooting

Active Mentoring

TTR coordinator

The framework for an Active Mentoring Support Model

1. Promoting Retirement 2. Laying the Groundwork in the Community 3. Constructing the Reality

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Promoting Retirement

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• Translating the notion of retirement as a positive thing • Giving ideas of what the possibilities are in retirement • Cedric 1

Thinking about possibilities

• Establishing strong relationships with people, their families and staff

• Exuding confidence that retirement was not setting people up to fail

Seeking the trust of others

• Selling the idea of dropping one day at work • An insurance policy - guaranteed right of return to work • Provide concrete examples of group and activity types • Laurie 1

Promoting the Model

Laying the groundwork

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• Knowing what is available in each community • Identifying group dynamics including entry criteria (e.g. age,

gender, address) • Getting to know key leaders in seniors community

Getting to know local

communities

• Strong existing relationships lead to easier access to groups for people with a disability

• Two-way process of give and take • Adapt to different sub-cultures (e.g. Men’s Shed, knitting group)

Becoming a trusted

community ally

• Help de-mystify “disability” • Work through previous bad experiences with people with

disabilities, or disability services • Minimise any perceived “threat” as an advocate for people with

disabilities

De-mystifying disability

Type of Volunteering Opportunity or Community Group

VOLUNTEERING Community (soup) kitchen (n = 1) Community nursery (n =1) Aviation museum* (n = 1) Lifeline charity shop* (n = 1)

COMMUNITY GROUP Men’s shed* (n = 8) Seniors group (n=1) Seniors choir (n = 1) Bowls club (n = 1) Seniors 10-pin bowling league (n=1) Community garden (n = 1) * Single sex group

VOLUNTEERING

Cat protection society* (n = 1)

Community nursery (n = 1)

Frail-aged social group (n=1)

COMMUNITY GROUP

Exercise* and social group (n = 1)

Community (teaching) kitchen (n=1)

Seniors group (n = 4)

Walking and knitting group (n = 1)

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MEN (n = 17) WOMEN (n = 10)

Volunteering 8 hours per week or more allows you to retain the mobility allowance

Constructing the reality

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5 stages with multiple players

•Person-centred philosophy •Incorporate transition to retirement into existing planning frameworks 1. Planning

•Locating possible groups of interest •Asking the question – “is this possible”? 2. Locating

•Negotiating new routines with family and disability services •Travel, money, changes to work patterns, fitting in with group home rosters •Navigate trial periods

3. Mapping a new routine – 6 months

•Identify potential mentors; recruit mentors •Provide training, encouragement and ongoing support to mentors 4. Recruiting mentors

•Create ongoing framework to monitor and support person and the group •Develop long-term communication pathways between key stakeholders

5. Monitoring and ongoing support

TTR case manger

Person with intellectual disability Family Accommodation

Service Vocational

Service Community

Group

Planning

Integrate transition to retirement planning into existing person-centred plans;

May be an alien concept if no prior contact with disability service

Identifying significant others informal and formal and bringing into the process- family, vocational, accommodation, other support services

Judy

Stephen

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Locating- Features that Support Inclusion Identification of possible groups facilitated by prior groundwork and good networks

with local groups

Canvassing ideas, visiting, discussion, feedback

CONSISTENT & REGULAR ACTIVITIES

Group meets weekly at the same time and place.

Identifying a specific activity/ role that the person can learn to take responsibility for (with support from mentors).

PERSON-CENTREDNESS

One person with disability per group.

Group that fits with the person’s interests (so the activity is enjoyable).

Perseverance

A variable proposition in terms of time – allow for false starts

Checking suitability – what makes a good

match

Interests

Gender

Age/ Fraility

Group Culture - dress, how do people interact whats acceptable –joking, swearing

Unwritten rules - routines Judy

Size – Noise – Flexibility

Leaders - who has experience of people with disabiliites

Trying it out and Introductions

Variable Time Total 8.25 hrs + 12.5 hrs

Example - person with no stated interests went to three different possible groups, but none worked out –

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Mapping a New Routine

Introductory visit to community organisation by person with intellectual disability

Facilitating new routines such as modifying work schedules, re-assessing finances, adjustment to rosters, new travel routines, and travel training Grahame

Process needs to be driven and coordinated by the TTR coordinator - disability services struggled to engage with changes

Variable time dependant on confidence and complexity

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Active Support

Co-Worker Training

Active Mentoring

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The Active Mentoring Model

Key Features of Active Mentoring

SUPPORT FROM MENTORS

Social support – greetings, conversation, introductions

Support for participation in activities Prompts for when to do an activity Support for how to do an activity Support for fitting in with group norms

(unwritten rules) Feedback and praise

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RECRUITMENT AND TRAINING OF MENTORS

Group members volunteer to be mentors.

Mentors trained to provide effective support and ensure activities are available.

Judy 3 Judy 4 Judy 6

Mentor Support

Graeme is greeted by his mentors Martin and Olympia and supported to sign in (DVD clip Graeme 1).

Mentor Olympia teaches Graeme how to pot seedlings (DVD clip Graeme 4).

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Mentor support

Variable structure dependant on group - e.g. Men’s Shed wanted everyone to be a mentor

Training after some weeks by then mentors had some initial experiences and developed some of their own ideas.

Training package involved “classroom style” disability awareness training followed by ongoing practical advice and support about participation Roger Judy 5

Often training was about refining good ideas, and supporting the group to simply use their common sense

Laurie segment DVD

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Monitoring and Support Ongoing process of sustaining the person’s participation and engagement in the group and their activities

Input required - – unpredictable – varying intensity

Changes in support networks, mentors, health •The wife of one participant died; despite a six-month established routine, significant support hours were required to re-support and re-establish a new routine

•The sole formal mentor for another participant left the group; the participant had no-one to support her participation so her engagement diminished significantly. Significant support hours were required to re-establish mentors and foster ongoing participation and engagement

•A participant who had been volunteering at the Aviation Museum suffered a critical heart problem and was hospitalised. After a 6-week gap, the previous routine, including intensive travel training, had to be re-established

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0

10

20

30

40

50

60

70

80

Planning Newroutine

Mentortraining

ongoingsupport

TOTAL:

Hour

s

Type of activity

Travel

Direct support

0

20

40

60

80

100

120

PLanning NewRoutine

MentorTraining

OngoingSupport

TOTAL:

Hour

s

Type of Activity

Travel

Direct Support

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Person 1: Singing group; some travel training, person with mild ID, person can’t read so songs recorded for home practice, good communication and social skills

Person 2: Seniors activity group; no travel training, person with more severe ID and autistic traits, transported to and from by disability service, very limited communication , need for significant support by mentors to ensure participation and engagement

Role of the transition to retirement case manager

Much more than direct support but critical to replicate this model

High level and multi-dimensional - community development, traditional casework and disability specific knowledge.

•Mapping local resources- networking capacity

•Negotiation with the range of key players - person, their family, accommodation services, vocational services and mainstream community groups

•Sensitivity to community sub-cultures and gender

•Hands active support and training skills

•Flexibility

The role is not about forcing “rights” but building community capacity by creating and sustaining community allies

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Outcomes Cedric

Participants’ Views About the Group They Joined

POSITIVE

All participants stated that they enjoyed going to their group.

NEGATIVE

No participants reported any negative views about their group.

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Findings from participant interviews after 6 months attending the group

I’ll keep on doing it for the rest of my life, bowling (lawn bowls).

I find it really good going there (community garden).

People are so nice .. We talk about all sorts of things (seniors

social group).

They’re my mates...they look after me, they talk to me…and sometimes

I help them (men’s shed).

Social Satisfaction

Graeme describes what he enjoys about of volunteering at the community nursery: activity, social contact, community participation (travel) (DVD clip Graeme 6).

Laurie describes having a chat and making new friends at the community choir (DVD clip Laurie 3).

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Conclusions: Effectiveness and Generalisability

EFFECTIVENESS 86% of intervention group participants participated in a mainstream community

or volunteer group The model was largely very successful in bringing about sustained

membership of these groups.

GENERALISABILITY Most participants were supported employees with mild/moderate disability

and little or no evident challenging behaviour (not formally assessed) and capable of routine self-care It remains to be seen whether this approach could be generalised

successfully to individuals with more severe disability, challenging behaviour, or in need of personal care (e.g., toileting).

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Research to Practice: Transition to Retirement Manual and DVD

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Manual + DVD published by Sydney University Press, November 2013

Transitio)

Foreword by Ken Baker, Chief Executive NDS

9 chapters designed for practitioners with practical guidance for implementation:

• Links to DVD clips • Vignettes • Tips

2 Appendices • Travel training • Forms

• Transition to retirement: a guide to

inclusive practice

Six stories following people participating in the Transition To Retirement Program.

Each story details the experiences of the participant, their families, carers and members of the community or volunteer organizations involved.

Can be streamed from:

http://www.afford.com.au/employment/transition-to-retirement-sp-829

RESEARCHER CONTACTS

Sydney

Roger Stancliffe; Nathan Wilson

nathan.wilson@sydney.edu.au

roger.stancliffe@sydney.edu.au

Melbourne

Christine Bigby

C.Bigby@latrobe.edu.au

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References: Transition to Retirement

Bigby, C., Wilson, N. J., Balandin, S., & Stancliffe, R. J. (2011). Disconnected expectations: staff, family and supported employee perspectives about retirement. Journal of Intellectual and Developmental Disability, 36(3), 1-24.

Bigby, C., Wilson, N. J., Stancliffe, R. J., Balandin, S., Craig, D. & Gambin, N. (in press). Transition to retirement: An effective program design to support older workers with intellectual disability participate individually in community groups. Journal of Policy and Practice in Intellectual Disabilities.

McDermott, S., Edwards, R., Abello, D., & Katz, I. (2009). Ageing and Australian Disability Enterprises: Final report. Sydney: Social Policy Research Centre, University of New South Wales.

Stancliffe, R. J., Wilson, N. J., Gambin, N., Bigby, C., & Balandin, S. (2013). Transition to retirement: A guide to inclusive practice. Sydney: Sydney University Press.

Wilson, N. J., Stancliffe, R. J., Bigby, C., Balandin, S., & Craig, D. (2010). The potential for active mentoring to support the transition into retirement for older adults with a lifelong disability. Journal of Intellectual & Developmental Disability, 35(3), 211-214.

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REFERENCES