ageing in place - redland city...12. disability services, queensland - quality of life for a person...

Edited byAngela Dew and Tim Griffin

CDDSCDDSCentre forDevelopmentalDisabilityStudies

ageinginplaceAAgeing ingeing in

Place:Place:Good Practice Good Practice

SourcebookSourcebook

Edited byAngela Dew, B.A

and Tim Griffin, Ph.D

May 2002

This sourcebook has been made possible with the assistance of the Bernard Judd Foundation, an initiative of

the Hammond Care Group.

AAgeing ingeing inPlace:Place:

Good Practice Good Practice

SourcebookSourcebook

© Centre for Developmental Disabilty Studies 2002

This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no

part may be reproduced without prior written permission from the Centre for Developmental

Disability Studies. Requests and enquiries concerning reproduction and rights should be direct-

ed to the Director, Centre for Developmental Disability Studies, PO Box 6, Ryde New South

Wales, Australia, 1680.

ISBN 0-646-42008-9

Dew, A., & Griffin, T. (Eds.).(2002). Ageing in Place: Good Practice Sourcebook. [CD-ROM].

New South Wales: University of Sydney, Centre for Developmental Disability Studies.

Any enquiries about or comments on this publication should be directed to:

Director

Centre for Developmental Disability Studies

GPO Box 6

Ryde, New South Wales, Australia 1680

Phone: (02) 8878 0500

Fax: (02) 9807 7053

E-mail: [email protected]

Published by Centre for Developmental Disability Studies

Document design by Arion Productions Pty Ltd, www. arionproductions.com.au

http://www.arionproductions.com.au

The Centre for Developmental Disability Studies appreciates the opportunity that the Bernard

Judd Foundation extended to the Centre in funding this project. The compilation of this

Sourcebook on good practice being implemented within aged care services in Australia and

internationally has involved the participation of many people. The Centre has appreciated their

willingness to share their knowledge for improving practice in supporting people with life long

disability who are ageing.

The Centre for Developmental Disability Studies extends thanks to the organisations that

responded by presenting their nominations of good practice for inclusion in this sourcebook.

The Centre wishes to acknowledge the participants on the Service Provider Panel who assisted

in the selection of the nominations.

l Fiona Cameron McGill, consultant in the Disability area;

l Christine Flanagan, Accommodation Manager, Ability Options, NSW;

l Lesley Russell, Assistant Manager, Department of Ageing, Disability and Home Care,

Disability Services, Metropolitan West;

l Robyn Chapman, Spastic Centre NSW

Acknowledgements

About the Bernard Judd Foundation and CDDS

Centre for Development Disability Studies & Bernard Judd Foundation: Ageing in Place Sourcebook

5

The Bernard Judd Foundation

The Reverend Bernard Judd, MBE OAM, was a

champion for social improvement particularly for older

people who were disadvantaged. The Bernard Judd

Foundation was established not only to honour a highly respected and loved man but also

to continue his work to improving the lives of ageing people with disabilities.

The Bernard Judd Foundation was established to discover the best in aged and dementia

research with a priority to projects that have an immediate and longer term practical appli-

cation to improving the quality of life for older people and those with dementia.

Centre for Developmental Disability Studies(CDDS)

The Centre for Developmental Disability Studies (CDDS)

provides leadership in research, teaching and clinical prac-

tice that informs the provision of services to members of

the community who have developmental disabilities, their

families and carers.

The Centre has a practical, multi-disciplinary approach, and

works in partnership with people with disabilities, other centres and government depart-

ments within Australia and overseas.

The teaching of medical and allied health professionals has been facilitated by the Centre,

whose present Director holds the Foundation Chair in Developmental Disabilities Studies,

Faculty of Medicine, University of Sydney.

CDDSCDDSCentre forDevelopmentalDisabilityStudies

TABLE OF CONTENTS


6

What is Ageing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9Ageing in Place . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .10How to Use the Sourcebook . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11A. Community Leisure/Retirement1. Community Membership - 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14

2. Case Book Integration Experiences: Programme Ideas Aging & DevelopmentalDisability - 1992 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .16

3. Building the Future: Planning & Community Development in Aging &Developmental Disability - 1991 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18

4. Activities Handbook & Instructor’s Guide for Expanding Options for OlderAdults with Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20

5. Department of Ageing, Disability and Home Care NSW, Use of CommunityAged Care Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22

6. The Housing Connection - Accommodation & Drop-in Support . . . . . . . . . . . . . .24

7. Murray Human Services Inc. - Community Based Programme . . . . . . . . . . . . . . . .27

8. Ability Options - Lifestyle Enhancement Programme . . . . . . . . . . . . . . . . . . . . . . .29

9. Ability Options - Lifestyle Options Division . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .31

10. Nambucca Valley, Pheonix Ltd. - Flexible Working Arrangements . . . . . . . . . . . . . .33

11. The MeiWel Group - Training & Skills in the Community (TASC) . . . . . . . . . . . . .35

B. Additional In-Home Support1. Windgap Foundation - 24 hour In-Home Support . . . . . . . . . . . . . . . . . . . . . . . . . .38

2. Focus ACT Inc. - Flexible Living Arrangements . . . . . . . . . . . . . . . . . . . . . . . . . . . .40

3. House with No Steps - 24 hour Care Model for Ageing Clients . . . . . . . . . . . . . . . .43

4. House with No Steps - Villa style accommodation for Ageing Clients . . . . . . . . . . .45

5. Murray Human Services Inc. - Home based Programme . . . . . . . . . . . . . . . . . . . . .47

6. Hornsby Challenge - Work with Generic Health Services to Maintain AgeingPerson/s in their own home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .49

7. Spastic Centre of NSW - Community Support/Drop-In Service . . . . . . . . . . . . . . .51

8. Spastic Centre of NSW - Home Options Programme . . . . . . . . . . . . . . . . . . . . . . .53

9. Home Care Services, NSW . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55

C. Palliative Care/End of Life1. New York State Developmental Disabilities Planning Council -Planning

for the Future: A Guide for Families and Friends of People with DD . . . . . . . . . .58

2. Dealing with End of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .60

3. Hornsby Challenge General Principles Around Grieving . . . . . . . . . . . . . . . . . . . . .62

4. Department of Ageing, Disability & Home Care NSW, Metropolitan West - Last Wishes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .64

5. WorkCover NSW Managing Loss and Grief in the Aged Care Industry . . . . . . . . .66

6. Hospitaller Order of St. John of God, Dublin - “People with a LearningDisability - Bereavement and Loss” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .69

TABLE OF CONTENTS


7

7. National Council on Intellectual Disability: “Life After Death: Preparing Peoplewith Intellectual Disability for Bereavement and Loss” . . . . . . . . . . . . . . . . . . . . . .71

8. Disability Services (South) Tasmania - Gesture/Commmunication Dictionaries . . .73

9. Disability Services (South) Tasmania - “Seeing is Believing”: BereavementSupport in Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .75

10. Disability Services (South) Tasmania - “When A Death Occurs: Informationand Guidelines on What to do” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .78

11. Ability Options - Lifestyle Options Division: Support for a Person with aTerminal Illness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80

12. Disability Services, Queensland - Quality of Life for a Person with an Intellectual Disability and a Terminal Illness as Their Physcial Health CareNeeds Change . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .82

D. Dementia1. Department of Ageing, Disability & Home Care NSW - “At Home with

Dementia” - March 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .85

2. Department of Ageing, Disability & Home Care NSW - Better BuildingBetter Care - July 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .87

3. Dementia Development Services Centre, University of Stirling, Scotland -“Different Realities: A Guide for Staff Working with a Person with DownSyndrome & Dementia” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .89

4. Minda Incorp. Aged & Dementia Care Issues for People with IntellectualDisability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .91

5. Crowle Foundation - Dementia Specific Group Home . . . . . . . . . . . . . . . . . . . . . . .93

6. The Lorna Hodgkinson Sunshine Homes - Video on Dementia and Intellectual Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .95

E. Aged Care Services1. Aged and Community Services Association of NSW & ACT Inc. . . . . . . . . . . . . . .98

2. Aged & Community Services Australia - “In Their Shoes - Caring for Residentsas Indviduals” . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .100

3. Helping Hand Aged Care Inc . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .102

4. Health and Aged Care - Aged Care Assessment Teams (ACAT) . . . . . . . . . . . . . .105

5. Health and Aged Care - Community Care Packages . . . . . . . . . . . . . . . . . . . . . . . .107

F. Assessment Tools1. Hornsby Lifestyles, The Lorna Hodgkinson Sunshine Home - Individual

Plan of Assessment of Support Needs & Current Skills . . . . . . . . . . . . . . . . . . . .110

2. Ability Options - Lifestyle Options: Assessment of Changing Needs . . . . . . . . . .112

3. Boswell Retardation Center - Pre-Retirement Assessment and Planning forOlder Persons with Mental Retardation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .115

G. Staff Training1. Activities Handbook & Instructor’s Guilde for Expanding Options for

Older Adults with Developmental Disability and accompanying volume,Expanding Options for Older Adults with Developmental Disability: APractical Guide to Achieving Community Access . . . . . . . . . . . . . . . . . . . . . . . . . .119

TABLE OF CONTENTS


8

2. Understanding Aging and Development Disabilities: An In-ServiceCurriculum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .121

3. The Lorna Hodgkinson Sunshine Home - Workplace Assessment Package- H. Cross Agency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .123

H. Cross-Agency Cooperation1. Pathways Committee, Armidale - Cross Agency Protocols . . . . . . . . . . . . . . . . . . .126

2. Ability Options - Lifestyle Options Support to Person in Aged Care Setting . . . . .130

I. Adaptability of Housing1. Modifying Home Environments - 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .133

2. Hornsby Challenge - Adaptable Housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .135

J. Annotated Bibliography1. Journal Articles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .138

2. Reports/Issue Papers/Manuals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .150

3. Books . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .156

Evaluation of the Sourcebook . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .162

What is Ageing?


9

Ageing can be defined from a number of perspectives: what happens at a biological level

throughout the body's systems; the manifestation of these changes in physical, mental, emotion-

al, and social functioning; and finally, in how aging individuals and their societies perceive and

adapt to the changes. Ageing is not something that happens mysteriously on one's 65th birth-

day; rather it is revealed as a holistic, subtle, individual, progressive, and lengthy process of

change and adaptation (Lubinski & Higginbotham, 1997. p 5)1 .

What is Successful Ageing?

Successful ageing for all people, including those with disabilities is about…

An individual retaining his or her capacities to function as independently as possible into old

age and promoting the belief that those who age successfully are able to remain out of institu-

tions, maintain their autonomy and competence in all activities of daily living and continue to

engage in productive endeavours of their own choosing (Janicki, 1994, p. 146)2 .

1. Lubinski, R. & Higginbotham, D. J., (1997) Communication Technologies for the Elderly: Vision, Hearing andSpeech Singular Publishing Group Inc. San Diego/London.

2. Janicki. M. (1994) Policies and Supports for Older People with Mental Retardation in M.M. Seltzer, M.W. Krauss &M.P. Janicki (Eds) Life Course Perspectives on Adulthood and Old Age (pp 143-166) Washington, DC: AmericanAssociation on Mental Retardation.

Ageing In Place


9

'Ageing in Place' relates to those practices which enable people with life-long disabilities who

are particularly vulnerable to being placed in institutional care, to age in their own community

homes.

The Centre for Developmental Disability Studies (CDDS) was awarded a grant from the

Bernard Judd Foundation (The Hammond Care Group) to develop a Sourcebook about good

practice in supporting people to 'age in place' or training providers in philosophy and issues of

ageing for people with life-long intellectual and/or physical disabilities.

The initial proposal for the grant was based around the precept of including practices which

were in use within the disability field within the State of New South Wales (NSW),in Australia

and internationally. The applicability of these practices to the NSW environment is one of the

essential features of the sourcebook.

The Ageing of People with Disabilities

Due to improved health and community care, the life expectancy of people with life long dis-

abilities has increased. The improved health status of this group will result in many adults who

have a disability ageing in formal supported accommodation services where they have lived all

of their adult lives. The support services for this group is provided across a variety of accom-

modation settings which includes group homes supporting three to six individuals and people

supported within their own homes. Within this population some individuals, for example many

with Down syndrome are recognised to age prematurely.

However, people with life-long disabilities are particularly vulnerable in many areas of life,

including being placed in institutional care. Institutional placement occurs when it is perceived

that support needs have increased beyond the capacity of services to maintain appropriate levels

of care

The Purpose of the Sourcebook

This sourcebook is about building capacity in service organisations to maximise the chances of

ageing in place and enabling people with life-long disabilities to enjoy the benefits of continuity

within their preferred accommodation.

The aim of the sourcebook is to gather and disseminate good and innovative service responses

to ageing in place.

How to Use the Sourcebook


10

Format of the Sourcebook

The sourcebook is divided into ten (10) sections:

A. Community Leisure/Recreation

B. Additional In-Home Support

C. Palliative Care/End of Life

D. Dementia

E. Aged Care Services

F. Assessment

G. Staff training

H. Cross Agency

I. Adaptability of Housing

J. Annotated Bibliography

Within the sourcebook, a synopsis of the practices nominated by an organisation is provided

along with the contact details for further information on implementation. It is anticipated that

anyone who is interested in a particular nomination will phone, fax or email (where available)

the organisation for further information and assistance in replicating the practices.

Entries in the sourcebook include international, national and local (New South Wales) examples

of ageing in place. The user may therefore, get examples of practices at various levels from a

theoretical perspective as described in a published text or handbook, through to a local example

of a practice occurring for one person. It is hoped that the variety of viewpoints will provide

users with a diversity and breadth of materials that will be of use to them in designing their

own response to a particular issue/problem.

How Nominations Were Gathered

CDDS widely disseminated a flyer and nomination form for the sourcebook to services

providers, organisations, government departments and individuals with an interest in intellectual

and/or physical disability across NSW, Australia and internationally. Over 1,500 flyers and

forms were sent out by mail, through the internet and email systems in seeking nomination for

the sourcebook. A number of organisations included information about the sourcebook in

their newsletters. Fifty three (53) nominations are included in the Sourcebook.


11

Literature Review/Annotated Bibliography

An international literature review was conducted for materials/articles that related to the area.

This yielded a significant amount of material. There is information with direct relevance to

ageing in place and other information of interest to those working or researching in the area.

The annotated bibliography is included in Section J at the end of the sourcebook. Some of the

nominations in the sourcebook are drawn from the literature and reference is made to this in

the nomination so that particulars can be accessed from the bibliography.

Service Provider Panel

A panel of service providers was established to decide upon evaluation criteria and to evaluate

the nominations against the criteria. This panel was led by the Research Fellow at CDDS and

included four service providers with experience in the disability/ageing fields. The service

panel developed and utilised an evaluation criteria format to assess which nominations would be

included in the sourcebook. The criteria have been adopted in the formatting of the source-

book.

Language

In compiling this sourcebook, CDDS encountered two spellings of the word Ageing/Aging.

The more widely acknowledged Australian version of spelling the word is Ageing and hence

this spelling has been adopted throughout the sourcebook, except where the word forms part

of a title or direct quote where it has been spelt according to the source.

Additional Resources

There are a number of websites that may be of use for people wishing to find out more about

the areas of ageing and disability:

l Department of Ageing, Disability and Home Care - www.dadhc.nsw.gov.au

l Home Care - www.homecare.nsw.gov.au

l Alzheimers Association NSW - www.alznsw.asn.au

How to Use the Sourcebook, continued


12

This yielded a significant amount of material. There is information with direct relevance to

ageing in place and other information of interest to those working or researching in the area.

The annotated bibliography is included in Section J at the end of the sourcebook. Some of the

nominations in the sourcebook are drawn from the literature and reference is made to this in

the nomination so that particulars can be accessed from the bibliography.

Service Provider Panel

A panel of service providers was established to decide upon evaluation criteria and to evaluate

the nominations against the criteria. This panel was led by the Research Fellow at CDDS and

included four service providers with experience in the disability/ageing fields. The service

panel developed and utilised an evaluation criteria format to assess which nominations would be

included in the sourcebook. The criteria have been adopted in the formatting of the source-

book.

Language

In compiling this sourcebook, CDDS encountered two spellings of the word Ageing/Aging.

The more widely acknowledged Australian version of spelling the word is Ageing and hence

this spelling has been adopted throughout the sourcebook, except where the word forms part

of a title or direct quote where it has been spelt according to the source.

Additional Resources

There are a number of websites that may be of use for people wishing to find out more about

the areas of ageing and disability:

l Department of Ageing, Disability and Home Care - www.dadhc.nsw.gov.au

l Home Care - www.homecare.nsw.gov.au

l Alzheimers Association NSW - www.alznsw.asn.au

Section A contains eleven (11) examples that relate to enhancing the involvement of people with dis-abilities who are ageing into community based leisure programmes, often as a retirement option.

A.CommunityCommunity

Leisure/Leisure/RetirementRetirement

A. Community Leisure/Retirement

Community Leisure/Retirement

Community Membership - 20003


14

The intentional creation of relationships and social structures that extend the possibilities for sharedidentity and common action among people.

Area Served: United States of America

Authors: Kultgen, P., Harlan-Simmons, J. E., & Todd, J. (2000). CommunityMembership. In M. P. Janicki ,& E F. Ansello (Eds.). CommunitySupports for Aging Adults with Lifelong Disabilities (pp. 153-165). Baltimore,USA: Paul. H. Brookes

Contact: Field-Based Coordinator, Center on Aging and Community, IndianaInstitute on Disability and CommunityIndiana University2853 East 10th Street, BloomingtonIndiana, USA 47408

Ageing in Place/Responsiveness to changing needs

Community builders take the time needed to discover the unique gift, interests, and preferences

of an individual before they introduce him or her to places within the community where he or

she can realize identified interests.

The community-building process uses a person-centered approach. This process matches the

focus person's expressed desires for community involvement with his or her preferences for

activities within the community. This approach can be applied across a span of age groups.

Practicality/implementation

l Community membership as a late-life lifestyle - people with developmental disabilities often

have little knowledge of what retirement means and have had limited preparation by way of

developing interests and hobbies which may be pursued in retirement;

l Community building relies on collaboration between the person and the staff member assist-

ing them;

l The community builder must get to know the person so that, together, they can create a

vision for a desired life in the community - 'discover the person behind the label';

l Looking for clues to the person's interests and wants - visit places that allow spontaneous

social interaction, offer opportunities for nonverbal participation and are associated with the

individual's past. Allow for spontaneity!

l Developing a vision - also need to talk with family members or others who have known the

person in the past. Use information gathered to organise and define the vision;

3: Refer to Annotated Bibliography, Section J.



15

l Develop a 'Capacity Inventory' - a descriptive inventory which focuses on positive attributes

that can form the basis of new relationships and valued community roles. The inventory

takes into account likes and dislikes, strengths to play up, social identities that are important

to the individual, preferred environments, skill and interests and dreams for the future.

These elements are then distilled into a few brief statements that describe the capacities of

the focus person.

l Connecting older adults to the community and to community members - explore the com-

munity for actual sites and activities in which the focus person will contribute and enjoy

meaningful participation.

A relationship map is helpful to plot a complex of six relationship clusters: intimate friends and

relatives, good friends, circles of participation (people affiliated with places in the community

where the focus person is engaged as a participant or volunteer), paid support persons, distant

but valued friends, and change agents (people who have supported a major positive transition in

the individual's life). The focus person's name appears in the centre of the clusters. As the

map is filled in, ideas for strengthening present relationships and nurturing new ones are gener-

ated.

Cost

Cost of employing 'Community Builders'.

Links between the disability and ageing or other service sectors

Approach can be used across settings.

Philosophical base

Based on O'Brien & O'Brien (2002)4 'Person-Centred Approaches'.

Training implications & resources

Training for community builders is required. This approach requires considerable investment in

staff time and expertise. It is individually based and requires an in-depth knowledge of the per-

son built up over time.

Outcomes

Acquiring new identities, new interests, new friends and new places to live, being seen as com-

petent, and being valued by family are all outcomes that can be experienced by participants in a

community membership effort.

4: O'Brien, L.,& O'Brien, J. (2002). The Origins of Person-Centered Planning: A Community of Practice Perspectives. In S.Holburn & P.M. Vietze. (Eds.), Person-Centered Planning (pp. 3-27). Baltimore: Paul Brookes Publishing Co.


Case Book: Integration Experiences: Programme Ideas Aging &Developmental Disabilities - 19925


16

Presentation of 38 case studies written by practitioners, administrators and other programme personnelfrom around the USA and abroad who have worked at integrating elderly individuals with develop-mental disabilities into generic aging services.


Author: Janicki, M.P., & Keefe, R. M. (1992). Integration Experiences Casebook:Programming Ideas in Aging and Developmental Disabilities . Albany, New York:New York State, Office of Mental Retardation and DevelopmentalDisabilities.

Contact: Matthew Janicki, Project Director,Community Integration ProjectNew York State Office of Mental Retardation and DevelopmentalDisabilities44 Holland Avenue, Albany, New York, USA 12229-0001

Phone: 518 473 7855

Fax: 518 473 9695

Email: [email protected]


Since the 1980's, American laws have changed so that all older persons, whether they have a dis-

ability or not, have equal access to programmes and services for ageing people.

As a part of that change, the federal government has emphasised cooperation and development

of interagency agreements at the federal level, along with this has been the development univer-

sity-based training and education programmes, as well as many demonstration projects.


The New York State Community Integration Project in Aging and Developmental Disabilities

surveyed new and various programme development throughout the United States. They were

particularly interested in models and practice experiences that aided older people with disabili-

ties to retire, participate in programmes and services and become part of their community's

aging network. They wrote to administrators of services to identify individuals and projects

which had been successful at integrating elderly individuals with developmental disabilities into

aging services or promoting their inclusion in community life.

5: Refer to Annotated Bibliography Section J.



17

The Case book is divided into eight (8) sections:

l Section 1: Bridging Networks - between the ageing network and the disability system;

l Section 2: Top Down Efforts - state level planning and development following the recogni-

tion that some problem or void exists and of the need to develop a means to address it;

l Section 3: Retirement Assistance Ventures - using common ageing network resources within

their community by pairing that older person with a friend or "coach";

l Section 4: Pull-Out Programmes - two or more groups of people are drawn together for a

common purpose during a distinct period of time;

l Section 5: Senior Companion Programmes - the model of a senior friend, or companion, to

help someone, who previously relied upon the disability system, to navigate the ageing network;

l Section 6: Senior Center Ventures -aiding older persons with developmental disabilities to

use the services at their local senior centers;

l Section 7: Social Model Site Programmes - offer a range of activities that for seniors with a

developmental disability are equated with varied retirement activities;

l Section 8: Adult Day Health Model Programmes - essentially similar to social model pro-

grammes but are generally funded through Medicaid (USA) and usually involve specialized

therapies, health monitoring and nursing care.

Cost

Available from the publisher.


Whilst service funding and delivery differs from the USA to Australia, many of the ideas con-

tained within the Case book could be adapted to the Australian context.

The examples are about integration of people with developmental disabilities within the aged

care sector.

Philosophical base

Based on the integration of people with developmental disabilities within the aged care sector.


Training of staff is mentioned within some of the nominations.

Outcomes

The nominations are organised with an Introduction, Project Description, Lessons Learned and

Parting Comments. The Lessons Learned section for each nomination is particularly useful for

exploring the outcomes of that model.


Building the Future: Planning and Community Development in Aging andDevelopmental Disabilities - 19916


18

A manual addressing specific issues and offering suggestions for activities which will lead to long-termplanning, training and programme development to aid the integration of older persons with developmen-tal disabilities into community senior programmes.


Author: Janicki, M. J. (1991). Building the Future: Planning and Community Developmentin Aging and Developmental Disabilities . Albany, New York:CIPADDPublications.

Contact: Matthew Janicki, Project Director

Community Integration ProjectNew York State Office of Mental Retardation and DevelopmentalDisabilities44 Holland Avenue, Albany, New York, USA 12229-0001

Phone: 518/ 473 7855

Fax: 518/ 473 9695



The manual contains an overview of experiences of New York service providers to people with

disabilities and of lessons learned in "building the future" for seniors with lifelong disabilities.

There is also information on issues related to ageing and developmental disabilities as well as

those which affect planning and community development.

The manual looks at both generic and specialized systems of care and services that are needed

to plan for accommodating older persons with lifelong disabilities.


The manual provides an overview of the local barriers to planning, networking, training and

programme development that may be encountered, along with possible strategies to overcome

them. The manual contains specific sections on aids to planning, networking, training and pro-

gramme development.

The manual has nine (9) sections:

l Section 1: Lessons Learned: The New York State Experience

l Section 2: Older Persons with Developmental Disabilities - provides useful definitions

l Section 3: Legislative Supports - American legislation




19

l Section 4: Identifying barriers to integration - policy, attitudinal, information/communica-

tion, financial, coordination/administrative, programme, education/training;

l Section 5: Overcoming Barriers to Integration

l Section 6: Developing Plans

l Section 7: Building Partnerships

l Section 8: Developing Training and Education Programmes

l Section 9: Developing Programmes

Cost



The manual has as a focus programmes which include older persons with developmental dis-

abilities into the broader system of 'senior' services. The manual was developed to aid localities

and states in the USA however, it has universal applications that span cultural, geographic, sec-

tional, political and philosophical differences.

Philosophical base

Practices which contribute to prolonged independence and an enhanced quality of life.


Section 8 on Developing Training and Education Programmes focuses on the need of staff to

understand disabilities and issues related to ageing along with the loss of functional capabilities

related to advancing age. The chapter looks at:

l Determining training needs including the assessment of training needs;

l Training approaches - cross training/in-service training; selecting topics for training; organis-

ing and carrying out conferences and workshops; using teleconferences; setting up staff

exchanges; implementing "train-the-trainer" approaches; providing consultation and evaluat-

ing training;

l Training at the university level;

l Training resources - an extensive list of training manuals, textbooks and other readings,

videocassettes and special journal issues is included.

Outcomes

The manual is designed to provide information to service providers so that their efforts in pro-

viding services to ageing people with developmental disabilities will be more targeted and

focussed.


Activities Handbook & Instructor's Guide for Expanding Options forOlder Adults with Developmental Disabilities7


20

This is a practical guide to achieving community access for older adults with developmental disabilities.


Authors: Stroud, M., & Sutton, E. (1988). Activities Handbook & Instructor'sGuide for Expanding Options for Older Adults with DevelopmentalDisabilities. Maryland: Paul. H. Brookes Publishing.

Contact: Paul. H. Brookes Publishing.Post Office Box 10624Baltimore, Maryland 21285-0624


The Activities Handbook is to be used by staff of agencies that provide a service to develop-

mentally disabled older adults, whether in special services for them or in generic community

services they attend.

The Handbook is divided into two parts:

l Part One: Activities Handbook (detailed in this section)

l Part Two: Instructor's Guide (see Section G: Staff Training of the Ageing in Place

Sourcebook)

The instructor can select from the Activities Handbook (Part One) the lessons needed by the

person with a disability (based upon testing of the individual and/or upon needs expressed by

the individual). Each lesson is designed for about 1 hour of presentation time if the activities

are included. The total presentation time could be 6 hours if the instructor covered every les-

son.


The Activities Handbook contains lessons grouped into seven areas of competence:

l Grooming/health;

l Social interaction;

l Personal security;

l Community activities;

l Public transportation;

l Leisure/recreational activities.

Each activity in these lessons is designed to give trainees experience in the skills of daily living,

self-help, and communication that are necessary for maximizing their ability to access community services.




21

Cost

Available from publisher.


The book is written for service providers within the disability and generic service sectors and

draws upon information related to ageing in the general population.

Philosophical base

Successful inclusion of developmentally disabled older adults in community services is the focus

of the book.


The book is a training manual. The teaching modes used include:

l Show, don't tell or "Try Another Way" - the use of minimal verbal instruction; giving people

time to process information; consistent instructions; talk about the problem, not the person;

l Model behaviours, Don't describe them - teaching people through them watching the behav-

iour being displayed;

l Small group work - develops networks and facilitates the practice of skills learnt.

The format generally includes the following pattern of elements:

l Motivate - relate the new activity to something known from previous experience;

l Employ visual presentation - pictures, slides, photos, real objects etc.;

l Interpret and teach - guide members in learning the new skill. Use modeling;

l Provide practice - allow members to demonstrate skills, go at their own speed and get lots of

encouragement;

l Reinforce - give members opportunities to use the new skill leading to generalisation;

l Give alternatives - variations on the activity.

Outcomes

The aim of the training is to

ensure that older adults with disabilities are able to anticipate retirement; then they may enjoy new activi-

ties in the company of the citizens of the community; doing new things; going places; making friends, and

making the most of that time of life (Stroud & Stroud, (1988. p 3).


DADHC8 - Use of Community Aged Care Facilities


22

The five elderly people with developmental disabilities who live in this group home are aged between 60and their mid 70s and attend activities within community aged care facilities.

Area Served: Metropolitan North, Sydney, New South Wales

Contact: House Manager. Department of Ageing, Disability & Home Care,Disability Services

Phone: (02) 9457 8114

Fax: (02) 9457 6002

Email: not available


The activities of the group home residents have been shifted, over the past 10 years, from

Adult Day Programmes to community aged care facilities. This decision was made due to the

vulnerability of this group of elderly clients to avoid injury by younger clients with challenging

behaviours.


The activities include:

l Local church services;

l The Church's "Aged Day Centre";

l Senior Citizens;

l Home and Community Care (HACC) Community Transport outings;

l Day Centre for aged persons.

The people with disabilities attend these activities on either an individual basis or with one other

person. The members of the local groups have been very supportive of the involvement of

people with disabilities in their groups. The support to the people with disabilities while they

are at the groups come from group members. Group home staff do not attend/or stay at the

groups.

Cost

The access to community aged care facilities has occurred without additional staff support.

The group home has just received an additional staff member to assist the person living in the

house who has late stage dementia.

8: Department of Ageing, Disability and Home Care, New South Wales, Australia



23


Considerable linking between disability and aged service sectors. Requires commitment on the

part of staff to seek out alternatives, develop links with aged care sector and support the per-

son in accessing the activity at least initially. The liaison between the group home staff and the

community aged care services is essential. The group home staff have "bent over backwards"

to facilitate the client's involvement and to iron out any hitches which may occur from time to

time. They see that the input of time has positively impacted on the lives of the people they support.

Due to the dementia of one resident, the Aged Care Assessment Team in the area provided

expert help in planning appropriate activities for this person at home and in modifications to

the house to assist all of the residents as they get older e.g. rails in the hallways and bathroom.

The person who has dementia no longer attends the community based activities however, they

receive 1:1 support and are encouraged to participate daily in small outings and household events.

One of the group home staff members is trained in aged care and has assisted the other staff

to understand that there are different phases in dementia and how to maintain the client

through these. This has assisted with maintaining the client in her own home.

Philosophical base

Based on the philosophy of age appropriate service provision. This programme also acknowl-

edges that people with disabilities should be provided with opportunities to be active partici-

pants in their local communities.


The group home has accessed information from the Alzheimer's Association and the Aged

Care Assessment Teams. Issues related to dementia and the general ageing of the clients are

discussed at the regular staff meeting.

The House Manager would be available to discuss how the group home went about accessing

generic aged care services and in supporting the resident with dementia in order to assist others

who may be facing similar issues.

Outcomes

Residents are accessing a range of community based generic services for older people.

The person with dementia (who was diagnosed about 2 ½ years ago) has, so far been able to

remain in her own home with additional staff support. She is, however, currently on the wait-

ing list for a Dementia Unit within a Nursing Home due to her rapid deterioration over the past nine

months.


The Housing Connection - Supported Accommodation and Dropin Support


24

Supported accommodation and drop in support to people aged 45+ according to individual need.

Area Served: Lower North Shore, Sydney, Australia

Contact: Accommodation Support Manager The Housing Connection

Phone: (02) 9415 2311

Fax: (02) 9413 4770



The Housing Connection provides supported accommodation services to individuals with intel-

lectual disability that live in the lower North Shore area of Sydney, New South Wales. The serv-

ices are tailored to the individual needs of the clients and encompass a range of issues in

response to need.


People over the age of 18 years live independently in supported accommodation with drop-in

support according to their individual need. The programme attempts to link clients to supple-

mentary services (may include aged care services, recreational, employment and retirement).

Cost

The organisation has applied for Service Access System (SAS) funding from the Department of

Ageing, Disability and Home Care to support some individuals as their support needs have

increased due to their ageing.

The organisation has also applied for funding through the Community Development and

Support Scheme Expenditure via North Sydney Leagues Club. Section 87 of the Registered

Clubs Act 1976 outlines the legislative arrangements for expenditure on community develop-

ment and support, including provision of Guidelines for Community Development and

Support Expenditure (updated 1 December 2000). The Act distinguishes between two classes

of expenditure:

l Category 1: Specific community welfare, community development, social services and

employment assistance activities; and

l Category 2: Other community development and support.



25

To qualify for the maximum duty remission of 1.5% of gaming machine profits over 31 million,

clubs should contribute:

l At least 0.76% to Category 1 purposes, and

l 0.75% to Category 2 purposes.

A Community Development and Support Expenditure (CDSE) Local Committee has as its pri-

mary objective to identify priority projects and services within a local government area, and to

prepare a priority list for consideration by local CDSE qualifying registered clubs.

The Funding Categories:

Category 1 - Expenditure on specific community welfare, social services, community develop-

ment and employment assistance activities. Expenditure under this Category is intended to

cover activities aimed at improving the living standards of low income and disadvantaged peo-

ple and other organisations that contribute to the welfare and broader social fabric of the com-

munity.

l Community Welfare and Social Services (includes supported emergency or low-cost accom-

modation; counselling; aged, disability and youth services);

l Community Development (includes neighbourhood centre activities, community transport

services, advocacy for local community services)

l Community Health Services (includes therapy, palliative care services, HACC and disability

services);

l Employment Assistance Activities.

In the Guidelines for Category 1 it is stated that consideration should be given to programmes,

projects or services that assist people with disabilities, older people, people from non-English

speaking backgrounds, Aboriginal and Torres Strait Islanders, women and young people. They

also state that there should be a mix between one-off assistance and longer term funding commitments.

It should be noted that extracts only of the Guidelines have been summarized here as they

relate to the topic of this sourcebook. A full copy of the guidelines can be obtained by visiting

the following web-site: http://www.clubsnsw.com.au/cdse/guidelines.htm

Or by contacting the Registered Clubs Association of NSW Phone. (02) 9268 3000.

Application forms for applying for the scheme can be obtained from the local Registered Club.


These would be pursued according to the need of the individual.



26

Philosophical base

The Principles of Normalisation.


Staff training is determined by the individual support needs of clients i.e if a client requires

support in a particular area, staff will access training to assist them to support the person in

that area.

Outcomes

The service is only new and is yet to experience outcomes for clients.


Murray Human Services - Community Based Programme


27

Community based programme for five adults9 (all 55 years and older) with intellectual, physical andsensory disabilities and acquired brain injury, to integrate into local generic Adult Day Activity Service(ADAS) programme.

Area Served: Murray Area, Echuca, Victoria

Contact: Aged Care Coordinator or District Area Coordinator

Phone: (03) 5482 1075 or (03) 5482 6708

Fax: (03) 5482 6988



A community based programme for five clients with intellectual, physical and sensory disabili-

ties and Acquired Brain Injury all 55 years old or older to integrate into the local generic ADAS

(Adult Day Activity Service) programme for aged people.


The implementation of the programme has relied upon networking between the disability serv-

ice and the generic service (The Shire of Campaspe). The management and staff of both serv-

ices were behind the programme and committed to 'making it work'. There is a need to 'sell'

the positives for both groups (the people with a disability and the aged people already accessing

the generic service) to both sets of staff. Some of the problems, which occurred during the ini-

tial phase, included the acceptance by staff, volunteers and other generic service users of the

inclusion of people with disabilities. In particular the communication difficulties and behav-

iours/medical conditions which were seen as socially unacceptable (eg coughing and dribbling

when eating) caused concern to some people. Therefore, the attendant care needs of the peo-

ple with disabilities were provided unobtrusively and in a matter-of-fact way that maintained the

dignity of the person.

Meetings between the groups of staff helped to 'set the scene' and inform the aged care staff

about what they might expect from the people with a disability.

Cost

A submission was made for funding through the Victorian Aged Initiative Funding. The fund-

ing provided two support workers for the group of five, equipment and furniture, which was

used by the entire group.

9: This programme now supports at least 10 people. October 2002.



28


l A positive working relationship has developed between the ADAS supervisor and the dis-

ability instructor who acknowledged that the established community group should be able to

be enjoyed by people of similar needs, interests and age regardless of disability.

l The Disability Support Workers act as a role model for involving the people with disabilities

into the mainstream group.

l There has been a sharing of duties between the two staff groups.

l Networking and sharing of resources between the disability and aged care service providers

has occurred;

l Comfortable armchairs, a washing machine, clothes drier, wheelchair, camera and small CD

player were purchased and jointly used by the group.

Philosophical base

The philosophical base of the programme is that people with disabilities should be able to

access age appropriate generic services within their local community. The service provider is

committed to meeting individual needs of clients and has worked together with the local shire

to ensure this occurs. The programme has proved the advantages of this approach to both the

people with disabilities who are ageing and the generic aged day service recipients.


There is a booklet outlining the course including photographs showing the involvement of the

clients.

The Individual Planning Process has been introduced with recording systems and evaluation

monitoring that show the benefit for clients.

Outcomes

l Friendships have formed between individuals within the group of ladies who had initial

reservations about the integrated programme, and they now offer assistance and friendship;

l The shorter duration of the programme is better suited to the group's needs due to their

limited stamina;

l The people with disabilities are now accepted as individuals by the other participants and

staff;

l One of the people who opted out of the programme (due to the people with disabilities

attending) has now returned to the programme.


Ability Options - Lifestyle Enhancement Programme


29

A community integration and access programme.

Area Served: Greater Western Sydney Area

Contact: Manager, Ability OptionsAbility Options Ltd.72 Railway Parade, Granville NSW 2142

Phone: (02) 9637 1944

Fax: (02) 9637 1537



This service has been evolving since 1996 when it went from a center-based day programme to

a community integration and access programme. The programme provides activities and servic-

es, as identified by service users. The service is flexible and responsive to the changing needs

and interests of service users. The service also offers a variety of activities and courses of gen-

eral interest which, particularly people who are looking to replace work with leisure activities

can access.


The programme has four functions:

l Education and Training in recreational programmes such as sports, aqua sports, relaxation,

arts and crafts and general interest programmes such as computers, photography and other

service user identified interests.

l Leisure programme including home hobbies with a view to providing a range of activities

which people can do in their own home;

l Evening social programme enabling people to attend a variety of activities with staff sup-

port;

l Community networking programme whereby individual service users are matched, by a

Networker into mainstream activities with community support. The Networker's support is

withdrawn once the service user and the group feels comfortable. For example, people have

become involved in the following activities and are now supported by people in the general

community who also attend that activity:

l Local church friendship group;

l Local arts group;

l Painting classes;

l Snooker group;



30

l Line dancing;

l Country and Western group;

l Seniors programmes.

Cost

Cost of the individual courses vary between $10-$100 depending on the length and course cho-

sen. Staffing costs are met out of existing funding levels.

Cost of networking is dependent on the type of activity the service user chooses.


Generic and age specific community based activities are accessed.

Philosophical base

Ability Options is committed to enhancing quality of life generally, in particular the independ-

ence, citizenship and community participation of people with a disability for whom the organi-

sation accepts a support responsibility. This is done in accordance with and in line with the

Disability Services Act and the Disability Service Standards.


The success of the programme depends on the quality of the programme, resources and the

trainer. We have engaged staff who have the skills to write, develop and implement programmes

to the target group. We provide staff training and support in all areas of the programme.

Resources are produced that are both pictorial and interactive.

Outcomes

l Successful participation and involvement in the community by service users both with staff

support and with natural supports within the activity/programme;

l Increased opportunity to select from a wide ranging programme base;

l Increased skill and knowledge of recreational activities;

l Increased social networks.


Ability Options - Lifestyle Options Division


31

Assisted retirement planning and implementation.

Area Served: Greater Western Sydney Area

Contact: Manager, Ability OptionsAbility Options Ltd.72 Railway Parade, Granville NSW 2142

Phone: (02) 9637 1944

Fax: (02) 9637 1537



A fifty three year old woman who has worked for over thirty years in sheltered employment

wished to reduce her time at work and increase her recreational and leisure activities. This was

discussed and planned as part of the Personal Future Planing process that each person in the

organisation undertakes annually. Planning for her retirement meant supporting her to expand

her understanding and knowledge of activities and services that were available to her while at

the same time building social networks to replace or enhance those friendships she had enjoyed

through her employment.


This process has been used for all service users who have a desire to reduce work and pursue

more leisure activities in retirement. People have been networked into appropriate activities

through our Lifestyle Enhancement Programme and other community agencies.

The steps that need to be implemented include:

Stage 1:

l Liaise with the workplace to inform them of the person's intention to reduce their hours of

employment;

l Set time frames for the implementation of this process;

l Reduce employment by one day;

l Replace this with a TAFE programme or community activity.

Stage 2

l Increase involvement in TAFE or community activity to 2 days per week and substitute time

away from work with another recreation programme of their choice.



32

Stage 3

l Continue this process until the person has retired from work altogether.

Cost

There is no cost to staff support however it should be noted that there would be costs associat-

ed with activities and programmes the person may wish to access. It is important therefore to

budget for the additional costs that the person may incur.


The aim of the service is to link the person with a disability into programmes and services that

non-disabled aged persons are accessing in the community.

Philosophical base



sation accepts a support responsibility. This is done in accordance with the Disability Services

Act and the Disability Service Standards.


Staff will need to be trained in the Personal Future Planning process that assists the service user

to identify their long-term goals.

Outcomes

l Planned approach to retirement;

l Successful participation and involvement in the community by service users both with staff

support and with natural supports within the activity and/or programme;

l Increased opportunity to select from a wide ranging programme base;

l Increased skill in and knowledge of recreational activities;

l Increased social networks.


Nambucca Valley Phoenix Ltd. - Flexible Working Arrangements


33

Flexible working arrangements are negotiated with supported employees over the age of forty years.Supported employees are assisted to access alternative day-time, community based activities.

Area Served: Nambucca, NSW

Contact: Service Development Officer

Nambucca Valley Phoenix Ltd.PO Box 121, Bowraville NSW 2449

Phone: (02) 6564 7677

Fax: (02) 6564 7933



The employment service is committed to assisting their ageing supported employees to reduce

their working time through flexible working arrangements and at the same time to develop

interests and access to community based services. The service introduces supported employees

over the age of forty years (for those people who are experiencing symptoms of premature age-

ing) into other services e.g. Day Programmes and community retirement programmes as well as

encouraging participation in small community events (sporting festivals, local outings etc.) which

are organised by Phoenix Ltd.


Flexible working days are negotiated with supported employees at their yearly Individual

Planning meetings. Flexible arrangements include the option to:

l vary their hours of work;

l take extra breaks during their work day;

l 'job share' with other supported employees;

l access other services (community based generic and age related) in the area.

The service also offers talks about retirement. For example, workers in the Art Collective may

'retire' but continue to work with the Art Group and receive commission on their work (as

other members of the local community do). This allows those people to participate without the

pressure of a nine-to-five job.

The service believes that this initiative works well because it operates within a small rural com-

munity where the employees are part of the community and known personally within the area.

However, the size of the community can also work against such an initiative as many people in

the community still believe that people with a disability should not be visible in the community.



34

Cost

The service is currently funded with a block grant, which allows flexibility in how the dollars are

utilised, however this will soon change to a case based funding model, which allocates funding

dollars on the basis of the measureable quantity of an agency's output. This type of funding

allocation will make an initiative of this sort more difficult. The service conducts some fund

raising activities however, given the small local population and the high unemployment in the

area, the funds raised in this way are limited. Volunteers are also utilised in the programme to

keep costs down.


The employment service has developed links with local organisations, and senior citizens pro-

grammes through the personal lobbying of the manager of the employment service who

approached local organisations and advocated for people with disabilities so they were to utilise

these services. Due to some behavioural issues which have arisen as part of the integration

programme, the employment service has run training for supported employees on how to

behave appropriately in community settings. The employment service works closely with the

local non-profit supported accommodation service and the Day Programme service for people

with disabilities (which caters for people with more severe disabilities than the supported

employment service) to ensure the most appropriate support for people.

Philosophical base

Work to retirement philosophy, to ensure that people can choose the timing of their retirement

and 'ease their way' into retirement.


Informal training through discussions at staff meetings regarding the range of services available

in the local area.

Outcomes

l The flexible working arrangements allow the ageing supported employees:

l more time to integrate into community activities;

l smaller chunks of time to plan for rather than coping with full retirement;

l opportunities to understand the 'flow of life' with younger employees entering the

employment and older employees reducing hours and taking up retirement activities.

l Generic and aged care services in the area have time to get used to people with disabilities

accessing their services for small amounts of time leading to greater lengths of time.

l Allows the local community time and the opportunity to see people with a disability interact-

ing in local community activities.


The MaiWel Group - Training and Skills in the Community(TASC)


35

A programme for clients who are ageing and find that traditional employment options are no longerappropriate for them.

Area Served: Maitland/Upper Hunter, NSW

Contact: Chief Executive Officer or Community Programs OfficerThe MaiWel Group115a South Street, Telarah NSW 2320

Phone: (02) 4932 8599 or (02) 4934 3144

Fax: (02) 4932 4286

Email: none available


The goal of the Training and Skills in the Community (TASC) programme is to provide clients

with intellectual and/or physical disability who are ageing and are approaching retirement, or

who have increased support needs, due to their disability and ageing issues, with relevant train-

ing and skills to increase their independence and widen their interests to assist them to remain

in their own homes. The programme currently runs for two days per week as a centre-based

programme with outreach into the local community and has as its target group people who are

ageing and who have worked for MaiWel in supported employment for a long period of time.

The programme attempts to bridge the gap between full time employment and retirement.

The programme aims to:

l provide training in independent living skills so that clients have the opportunity to increase

their skills level and/or obtain skills that they may previously not have possessed;

l develop new interests for clients which may provide them with a new aspect to their life and

change their perspectives, thereby extending their ability to remain in their own home as they

age;

l develop a network of support for each client;

l access medical and psychological assessments as required;

l develop new social contacts with the other people in the group and the support

workers/volunteers who work with the groups;

l provide client carers with respite so that they are able to continue to cope with the responsi-

bilities associated with providing care for a person with a disability who is ageing.



36


The TASC programme provides training in the following areas:

Money management and budgeting; Independent Living Skills; Cooking; Domestic duties;

Personal care; Healthy living choices; Wardrobe selection; Social behaviour.

Hobbies development; Arts and craft; Community interaction; Australia Day Festival; Drama

productions; Shopping; Social activities (eg to the cinema); Melbourne Cup and other recog-

nized celebrations at local venues.

Cost

The organisation has applied for funding to the NSW Department of Ageing, Disability and

Home Care for a pilot TASC programme to extend the programme to five days per week in

order to meet the changing needs of the clients, to address the productivity issues in the work-

place as clients age and their support needs change and to free up places for younger clients

within the Business Services branch of the organisation as older clients retire. In the meantime,

the organisation funds the programme for two days per week from its fund raising activities.


There is an overall lack of day programmes for people with disabilities and aged people in the

area. The organisation is working with the local Home and Community Care (HACC) group to

develop services applicable to both disabled and ageing people.

Philosophical base

Promotion of 'ageing in place' through providing people with an alternative to work as they age.


l All staff receive induction training related to working with people with disabilities;

l Many of the staff have Certificate IV in Workplace Training and Assessment;

l A few staff have Caring for the Aging qualifications;

l Specific training modules have been developed;

l Standard Operating Procedures for the programme.

Outcomes

The programme has demonstrated that it extends the viability of clients remaining in non-insti-

tutional settings.



36

Money management and budgeting; Independent Living Skills; Cooking; Domestic duties;

Personal care; Healthy living choices; Wardrobe selection; Social behaviour.

Hobbies development; Arts and craft; Community interaction; Australia Day Festival; Drama

productions; Shopping; Social activities (eg to the cinema); Melbourne Cup and other recog-

nized celebrations at local venues.

Cost

The organisation has applied for funding to the NSW Department of Ageing, Disability and

Home Care for a pilot TASC programme to extend the programme to five days per week in

order to meet the changing needs of the clients, to address the productivity issues in the work-

place as clients age and their support needs change and to free up places for younger clients

within the Business Services branch of the organisation as older clients retire. In the meantime,

the organisation funds the programme for two days per week from its fund raising activities.


There is an overall lack of day programmes for people with disabilities and aged people in the

area. The organisation is working with the local Home and Community Care (HACC) group to

develop services applicable to both disabled and ageing people.

Philosophical base

Promotion of 'ageing in place' through providing people with an alternative to work as they age.


l All staff receive induction training related to working with people with disabilities;

l Many of the staff have Certificate IV in Workplace Training and Assessment;

l A few staff have Caring for the Aging qualifications;

l Specific training modules have been developed;

l Standard Operating Procedures for the programme.

Outcomes

The programme has demonstrated that it extends the viability of clients remaining in non-insti-

tutional settings.

Section B contains nine (9) examples of how services have met the needs of people with disabilitieswho, as a result of ageing, require additional support to remain living in their homes.

B.AdditionalAdditional

In-HomeIn-HomeSupportSupport

B. Additional In-Home Support

Additional In-Home Support

Windgap Foundation - 24 Hour In-Home Support


38

Group home for ageing clients (over fifty-five (55) years) who require 24-hour support with transport,meals, outings and other activities.

Area Served: Eastern Suburbs, Sydney, New South Wales

Contact: General Manager, or Residential Coordinators

Windgap Foundation PO Box 756, Rosebery, NSW 2018

Phone: (02) 9693 2399

Fax: (02) 9669 5085



Group home for ageing clients (over 55 years) who require 24-hour support with transport,

meals, outings and other activities.

Twelve months ago, this organisation undertook a major re-structure of their operations based

around looking at the needs of the people with disabilities which they support. The restructure

looked at (among other things):

l Compatibility of people living together;

l Individual choices;

l Similar and diverging interests;

l Size of the group living together;

l Accessibility and aspect of the houses (related to the needs of individuals);

l Transport needs of individuals.

The re-structure was conducted in consultation with the clients, their families and the Board of

Directors of the organisation. The result of the re-structure was that the client 'make up' of

seven of the eight group homes run by the organisation changed.


One home has become an 'ageing house' providing 24 hour support. This has enabled people

with similar needs to live together with people who they like.

l The Individual Programme Plans (IPP) of clients focused on the changing needs of the

individual with a result that people have re-assessed their day time activities. Pre-retirement

and retirement plans have been put in place with the option of people taking long service

leave while they explore what retirement might mean for them (while still maintaining the



39

option of returning to work). Some people have reduced their hours at work and attend day

activities for part of their week.

l Changing health care needs have been explored via specialist disability assessments.

l The leisure and recreation preferences of the group have also changed with people prefer-

ring more age related recreation options.

Cost

Funded from existing resources. The re-structure of the organisation has enabled it to 'move

resources around' in order to meet client need. The re-structure of the organisation appears to

be crucial in making this work as resources have been applied in different ways to meet the

needs of different individuals/groups.


The organisation stated they have not been successful in the past in accessing generic aged care

services for people with disabilities, however they continue to try to access these services.

The organisation also raised the issue of prematurely ageing people with disabilities who do not

fit the chronological age restrictions for generic aged care services but who none-the-less have

similar needs to 'aged' people.

Philosophical base

People with disabilities sometimes age quicker than people in the general community and the

organisation has sought to provide these people with more support. The re-structure is

enabling people to age in their own homes with additional support as required.


Ongoing one-to-one training of staff is provided through the organisation's Training Unit.

Staff are trained to meet the needs of the individuals whom they support.

Outcomes

The re-structure occurred less than 12 months ago, however the organisation has seen a reduc-

tion in challenging behaviours and less need for 'crisis management'. Apart from 'teething

problems' the management of the organisation believes that the re-structure has brought signifi-

cant benefits to individuals.


Focus ACT Inc. - Flexible Living Arrangements


40

Flexible living arrangements to assist people with intellectual and physical disabilities to remain athome.

Area Served: Australian Capital Territory (ACT)

Contact: Assistant Manager Focus ACT Inc

Phone: (02) 6282 9422

Fax: (02) 6282 9420



l The service is committed to assisting people to remain at home.

l The service assists the person with a disability to find a suitable place to live (adapted if nec-

essary eg ramps) and then the service provides advice, information and practical assistance

to support the person in this placement (24 hour support if required).

l Preventative health measures with regular medical check-ups, diet and exercise. This

includes the development of a good relationship with the person's GP over a period of time

so the doctor has an increased opportunity to pick up on changes and refer to other doc-

tors/specialists.

l Good core of support workers who are valued by and shown they are valued by the organisation.

l Support workers are chosen who know the person very well and have known them for a

long time in order to pick up signs of distress or illness quickly, especially where the person

with a disability is unable to communicate verbally.

l The organisations allows support workers to have friendships with those they support and

include them in their own families if they desire. This increases the social and support net-

works of the person;

l Invite members of the public to share the person's home to alleviate loneliness, share bills,

safety etc. in return for low rent and possibly some informal support;

l Invite members of the public to form friendships with people with disabilities to lessen

loneliness and be part of the 'safety net' in terms of vulnerability. This increases the num-

ber of people in the life of the person with a disabilities.

l Insist that following illness in hospital, people with disabilities are not discharged until serv-

ice carers can manage them at home. This appears to be where people are most vulnerable

to going into nursing homes/institutions.



41


Requires a high degree of flexibility within the organisation to meet the needs of each individ-

ual rather than providing a 'model' of care into which the person with a disability is expected to

fit.

Cost

Funding is received from the ACT government and from the HACC programme.


l Invite people from the general public to share accommodation and/or friendships with people with

disabilities.

l Agencies to work together to present the issue of ageing and disability to politicians and

funding bodies.

Philosophical base

l Support people with disabilities in 'natural ways' without being overly 'servicey';

l Avoid more than three people with disabilities living together. The group home model of

up to five people living together in a house can be problematic if people do not get on well

together. The structures required within a group home can also result in the house becoming a 'mini-

institution';

l Close contact between the people the organisation supports, the support workers and the

management. This is to prevent decisions being made at a distance.


l Basic values based training

l Historical perspectives

l Practical training on issues such as lifting, First Aid courses.

l Hiring of mature people with common sense and a caring nature,rather than over-profes-

sionalised people who may distance themselves from the people who the organisation supports.

Outcomes

l There are approximately 50 friendships between people with a disability supported by the

organisation and non-disabled members of the community. 'Friends' are recruited via adver-

tisements on the local television station and in local newspapers. Potential 'friends' are inter-

viewed, screened and have reference checks prior to being matched with a person with a dis-

ability. The organisation supports these relationships. In effect, this is a volunteer scheme

that hopefully develops into a friendship between the volunteer and the person with a disability.

l The organisation currently supports 17 households where a person with a disability shares

their house with a non-disabled person. There is a procedure of advertising for a 'house-



42

mate', interviews and checking of references before both the disabled person and the non-

disabled person decide if they want to live together. If they do, a tenancy agreement is

drawn up with additional clauses detailing what, if any support/assistance the 'house-mate'

will provide to the person with a disability with a subsequent reduction in the rent paid.

This arrangement has been shown to reduce the isolation and loneliness of the person with

a disability as they are introduced to a new group of friends and acquaintances of the

'house-mate'. This accommodation arrangement helps to reduce the cost of living for both

parties.


House with No Steps - 24 hour care model for ageing clients


43

Five bedroom group home (Midjum Cottage) for people with a disability who are ageing.

Area Served: Wollongong, New South Wales, Australia

Contact: Regional DirectorHouse With No Steps

Phone: (02) 4227 2655 or 4284 3340 or 0412 300 097

Fax: (02) 4283 1116



This is a joint National Pilot Project between the Commonwealth Department of Family and

Community Services, NSW Department of Ageing, Disability and Home Care, NSW

Department of Housing and the Southern House with No Steps.

The aim of the project, which commenced in 1996, was to provide a residential care option for

people who are ageing and who also have an intellectual disability.

The Cottage provides 24 hour support to 5 people aged over 55 years with severe intellectual

disabilities. All 5 residents were assessed by the local Aged Care Assessment Team (ACAT) as

requiring at least hostel level support or higher. Prior to their moving into the cottage, the resi-

dents all lived at home with ageing carers/family.


The house has been designed to be totally accessible for people with varying support needs

with design features including ramped accessible entries, railed passage ways, specially designed

light and power switches, accessible bathrooms, and temperature regulated water systems.

One particular feature was the design of an accessible bathroom that allowed for further modi-

fications as people become older and frailer. Water pipes were laid dormant behind tiles and

walls to be used at a later date if an accessible shower was needed. This provided for a flexible

and cost effective response to people's changing needs.

The staff have a mix of disability and aged care residential experience.

Cost

The capital expenditure for the house and land was contributed by the NSW Department of

Housing. The bulk of the recurrent support funding is made available through the NSW

Department of Ageing, Disability and Home Care. Recurrent funds are also available from the

Commonwealth Department of Health and Family Services in the form of three Community



44

Aged Care Packages. Complimenting this funding is the commitment made by the House with

No Steps, Southern Region which contributes resources to the project in the form of staff

leave coverage and training.

Residents are charged a fee for service equivalent to 75% of the disability or aged pension,

whichever is the case.

This service operates on a total budget of $338,471 or an average of $67,694 per client.


The organization as a whole has established close links with existing aged care providers, partic-

ularly with respect to staff training in the areas of dementia, incontinence management, and

manual handling.

In 1998, the programme entered a new phase with the addition of a community care option for

older people with intellectual disability and high support needs still living in their family home.

Southern House with No Steps became the auspice for support packages for 3 other individuals

whose choice was to remain in their family home in the community.

Their packages were integrated into the management of Midjum Cottage with additional com-

munity support workers, registered nurses and other therapists being coordinated by the manag-

er of the cottage. Staff provide up to 70 hours per week to service users in their homes, with

hours able to be pooled dependant upon individual need.

This provides an extremely flexible option to service users and their carers as a carer may

choose to pool support hours and request 10-20 hours of support. However, the following

weekend the carer may leave the house for 2 days and Southern House with No Steps will pro-

vide 24 hour support to the service user in the home.

Philosophical base

Midjum Cottage is designed and operated with the ageing in place principle as the fundamental

consideration.


Southern House with No Steps provides training to staff members.

Outcomes

Support for each individual client is based on the premise of living skills maintenance and quali-

ty of life experiences enjoyed by other people of similar age and culture.


House With No Steps - Villa style accommodation for ageing clients


45

Albion Park Cottages provide six two bedroom villas which are clustered together in two groups ofthree villas.

Area Served: Wollongong, New South Wales, Australia

Contact: Regional Director House With No Steps

Phone: (02) 4227 2655 or 4284 3340 or 0412 300 097

Fax: (02) 4283 1116



The villas provide residential support to eleven (11) people with moderate to severe intellectual

and associated disabilities who previously lived in a boarding house setting and who expressed a

desire to live together when the boarding house closed.

The service users have an average age of 65 years with the oldest person being 82 years old.

Each villa has been extensively individualised based upon each person's needs and desires.


The physical environment consists of 6 x 2 bedroom villas, clustered together in two groups of

three villas.

The residents enjoy the privacy and security of their villas and yet appreciate the access they

have to friends. The service is designed around the individual needs of each person and staff

support them with all aspects of daily living with a range of shifts covering 24 hours per day.

Staff have a variety of backgrounds and qualifications in both disability and aged care.

Cost

The service is funded by the NSW Department of Ageing, Disability and Home Care.


The organization as a whole has established close links with existing aged care providers, partic-

ularly with respect to staff training in the areas of dementia, incontinence management, and

manual handling.

The residents access a number of, predominately generic, services in the community. Services

accessed include a day programme which caters to their ageing needs. Many of the residents



46

have had contact with aged care services such as psycho geriatricians, dieticians and speech

pathology for swallowing assessments, ACAT teams for aged care assessments and continence

management and, Occupational therapy assessments for risk assessments of their environment

and mobility assessments.

Philosophical base

As the residents age, the increased need for flexible approaches is increasingly evident. The

organisation aims to facilitate ageing in place for the residents in a comfortable and safe

environment.


Southern House with No Steps provides training to staff members.

Outcomes

Ageing in place has, so far been achieved for these individuals through modification of their

physical environment as required, by ensuring staffing levels are adequate and that resources to

meet the needs of each individual are provided.


Murray Human Services Inc. - Home based programme


47

Home based programme for 1:1 support of a 58 year old male with Downs Syndrome living in a com-munity residential unit.

Area Served: Murray Area, Echuca, Victoria

Contact: Aged Care Coordinator or District Area Coordinator Murray Human Services Inc.

Phone: (03) 5482 1075 or 5482 6708

Fax: (03) 5482 6988



A 58 year old male with Down's syndrome who is showing signs of Alzheimer's, low stamina

levels and poor vision, is living in a community residential unit (CRU) run by the Victorian

Department of Human Services.

The aim of the home based programme is to preserve and maintain his limited stamina, physi-

cal and mental health. He is then able to attend and enjoy the activities at the Adult Day

Activity Service (ADAS) the other four days. He will then be able to age in familiar surroundings with

people who know him and to maintain his routine.


The programme aims to meet the client's needs by being:

l Of shorter duration (5 hour community based programme);

l Routine;

l Within familiar surroundings which gives him confidence and comfort.

Cost

Funding was applied for and granted to provide a one to one carer for the client so that he can

have a 'rest' day in his own home. This was required as the CRU was not staffed during the day.

Clients are therefore almost 'forced' to attend ADAS five days per week or they face being

placed prematurely in an Aged Care residential facility.


The client is able to attend the generic Adult Day Activity Service and to access the podiatrist

and hairdresser at a subsidized cost (see nomination is Section A of this Sourcebook regarding

the Murray Human Services - Community Based Programme)



48

Philosophical base

Enables the client to age at home in familiar surroundings and with familiar people.


The programme is documented through an Individual Planning Process with daily recording.

Outcomes

During his 'day off' the resident is able to sleep in, have a leisurely breakfast, participate in gentle

activities or doze if he needs to. He also attends appointments on this day eg podiatrist,

masseuse, hairdresser. These activities can be scheduled for the morning when he is at his opti-

mum. The pressure of working five days a week is taken off the resident and his quality of life

is enhanced.


Hornsby Challenge - work with generic health services to main-tain ageing person/s in own home


49

Liaison with generic health service, for example Aged Care Assessment Teams, (ACATs) to maintainthe ageing person with a developmental disability in their own home.

Area Served: Northern Suburbs of Sydney

Contact: Manager, Hornsby Challenge

2 Rowe Street, Hornsby NSW

Phone: (02) 9874 8544

Fax: (02) 9874 8870



The service aims to ensure that the person with a disability has access to the generic supports

that exist in the community and are available to all other members of the community. The spe-

cialist knowledge of the disability service is then used to assist the generic service do its job.


Challenge Hornsby has found that the process of engaging generic medical and aged services

has been difficult as they are often under resourced and over subscribed and are therefore,

reluctant to add people to the waiting list. However if a person is older and has issues to do

with ageing, they are entitled to receive aged care services regardless of their intellectual disabili-

ty in order to meet their ageing issues. It is important, however that the disability service does

not abandon the person at this point. The disability services' role becomes one of interpreting

the person to the aged service and continuing to deal with the disability issues.

Cost

Where a person has access to some funds, either through a trust or because they have some

family members who can help, Hornsby Challenge have been able to maintain people in their

own homes instead of moving them to nursing homes, by using a combination of Home and

Community Care (HACC) services and private home nursing.

If the person doesn't have access to extra funds, the organisation has assisted them to gain

access to Home Care, Sydney Home Nursing, gardening and shopping services, Red Cross and

Lifeline telephone services, mobile library and to use the local community centre's recreation

services for elderly people. All these services are free or are available to pensioners at only a

small cost.


Some aged care services maintain that the disability service should provide all support for the



50

disabled person as the aged care service doesn't "understand the disability". The organisation

must remind the service that their help is required only for the aspects of the person's support

that is within their expertise. The disability service must reassure other services that they will

continue to take care of the disability issues and to assist the generic service to do their job with

the person. The disability service is doing the client a dis-service if they pretend that they can

do everything the person needs - especially if the person has medical needs that really require

nursing attention. This process has worked well for Hornsby Challenge over the years because

the organisation:

l is reliable, easy to talk to and negotiate with and has staff who are friendly and co-operative

with the other service providers;

l has used people's General Practitioners to request services as this is more likely to illicit a

positive response;

l has been active in local area inter-agency groups and on the local Division of General

Practice in order to raise the issues pertaining to the disabled and to make sure other servic-

es understand the scope and limits of a disability service.

Philosophical base

Hornsby Challenge has a belief that the organisation should be like stage-hands in people's lives

- arranging things and setting things up so that the people they serve can then get on with their

lives. The organisation does not believe that it is their role to control all aspects of people's

lives, indeed the organisation believes that people are better protected if they are truly part of

the community and involved in the life of the community - being of the community not just in it.


Staff need to be well trained to see themselves as facilitators, not as owning or in control of

people's lives. Managers need to be good negotiators and look for opportunities to help people

to gain access to other services and supports. Over the long term, this reduces support costs.

It also means that the person is not wholly dependent on one set of staff. By using generic

recreation and day services the person is also provided with opportunities for developing friend-

ships, which the organisation can then support them to maintain.

Outcomes

l good relations with ancillary and adjunct services that help improve the quality of people's lives;

l expert help for people with medical and age related problems;

l reduced dependence on one set of staff/one agency;

l capacity to age at home and not be confused and frightened by having to move into an unfa-

miliar environment.


Spastic Centre of NSW - Community Support/Drop-in Service


51

Supports people with disabilities living independently in their own home in the community by staff act-ing as facilitators to assist clients to access community services.

Area Served: North East Region of Sydney, Australia

Contact: Regional ManagerManager, Adult Resource Program

Phone: Regional Manager: Ph. (02) 9809 8538/9809 7055

Manager, Adult Resource Program: Ph. (02) 9972 8190

Fax: (02) 9809 7195



This service supports people of all ages who have cerebral palsy and are living in their own

home in the community to access services in the community. Whilst it is not specifically target-

ed towards people who are ageing, many of the consumers receiving this service are older and

the assistance provided to them to access generic and specialist services in the community

enables them to remain living in their own homes.


The service operates as a Case Management or Service Coordination model as it relies upon the

person with the disability to contact the service when they require assistance. The service pro-

vided is targeted specifically to the client's request e.g. it may be one-off assistance with filling

in official forms or attending an appointment as a support person, or it may be more regular

contact such as assistance with banking, negotiating with Home and Community Care services

or the Housing Department on the client's behalf. For the older people accessing the service,

support to make and attend medical appointments is one of the major requirements.

The service is also active in ensuring that clients have access to assessments, conducted by psy-

chologists employed by the Spastic Centre, to determine their changing needs so that these may

be better met. The service will also look for other support services in the community for

clients who require this.

The nature of the service is to fill a transient role in people's lives by assisting them as and

when required.

Cost

The service is fully funded by the Spastic Centre of NSW.



52


Services accessed by consumers include specialist disability and generic services including serv-

ices for older people as appropriate. The service is adaptable across a range of settings with a

flexible use of staff resources as the key component.

Philosophical base

The service aims to maintain consumers in their own homes for as long as possible and to prevent

their institutionalisation.


The staff who are employed by the service have tertiary qualifications in human and social sciences. Staff

can access training provided by the Spastic Centre of NSW and may also apply to attend exter-

nal training according to their identification of training needs from their performance appraisal.

Staff employed by the Community Support/Drop-in Service often need to attend training in

Advocacy and Communication skills.

Outcomes

The service outcomes are the maintenance of people living as independently as possible in the

community for as long as possible and prevention of their admission to 'institutional' settings.


Spastic Centre of NSW - Home Options Programme


53

This programme allows people with cerebral palsy to be supported in their accommodation service ratherthan to travel to their day service.

Area Served: North Eastern Sydney, Australia

Contact: Regional ManagerCommunity Access Services Manager

Phone: Regional Manager. (02) 9809 8538/9809 7055 Community Access Services Manager (02) 9972 8161

Fax: (02) 9809 7195



This programme is available to people who are ageing (primarily over 45 years) who have cere-

bral palsy and multiple disabilities living in the Spastic Centre of NSW's accommodation servic-

es in the North East Region of Sydney. It allows people to be supported in their accommoda-

tion service rather than travel to their day service. It gives them the choice to be involved in

group activities or individual activities.


Flexible support is provided to enable the person to choose where they conduct their retirement

activities.

At present, two people are on the Home Options Programme five times a week and two other

people are on the programme for part of the week.

People on the Home Options Programme opt to engage in the following activities:

l sleeping in;

l hobbies/interests;

l letter writing;

l compiling photo albums;

l talking

Activities occur either individually or as part of a small group of up to four people.

The programme operates with one dedicated staff member to four people. The staff member

has experience in the accommodation sector. Other staff are rostered on the programme in

order to gain experience and to be able to relieve the permanent staff member as required.



54

All of the people on the programme are participants in other Spastic Centre programmes and

have either requested to go on the Home Options Programme or are approached about it by

staff members who have noticed that they are not managing, or getting tired with full time

work or day services.

Cost

The programme is fully funded through Spastic Centre funding.


There are no links with other agencies as the activities occur in the person's own home.

Philosophical base

The programme aims to enable people to age in their own homes by reducing the stress or

pressure of full time community based programmes. It allows people to spend more time in

their own homes pursuing recreation and leisure options.


All staff receive Spastic Centre training much of which is now geared at the ageing population.

Outcomes

People's quality of life is improved as they are able to enjoy more quality one-to-one time with

staff engaged in activities that they enjoy and find relaxing. For some clients this has resulted in

a complete change in behaviour as they benefit from a quieter, less stressful environment out-

side of a group situation. Relationships with staff members have also developed as clients

spend one-to-one time with staff.


Home Care Services NSW


55

Range of in-home services designed to keep the person with a physical and/or intellectual disability or aperson who is ageing in their own home.

Area Served: Twenty five (25) locations throughout NSW. Australia

Home Care Services, New South Wales, Australia

Contact: Central OfficeLevel 3, 6 Parkes Street, Parramatta NSW 2150

Phone: (02) 9689 2666

Fax: (02) 9689 2879

Website: http://www.homecare.nsw.gov.au/services.htm


Home Care provides services to people who are frail aged, younger people with disabilities and

others who are unable to live in their own homes without some assistance. Home Care also

provides assistance to carers, people recovering from illness and families or individuals in crisis.


Home Care Service NSW provides the following services:

l Housekeeping;

l Personal care;

l Respite care and live-in housekeeping while regular carers are away or want some time out;

l Shopping;

l Planning customers' services (assistance and referrals).

There are local variations as to which services are offered in a particular area.

Area offices are located at:

l Metropolitan North/Western Area - Level 3, 6 Parkes Street, Parramatta, NSW

l Southern Area- Level 3, 6 Parkes Street, Parramatta, NSW

l Metropolitan South/Central West - Level 3, 6 Parkes Street, Parramatta

l Northern NSW- 84 Beardy Street, Armidale Ph: (02) 6772 9477, Fax: (02) 6772 9309

Cost

As a principle a small client contribution is expected - the amount is negotiated with clients dur-

ing their assessment for services. However, in cases of hardship, the fee will be waved.




56

Home Care Service's brief is to provide services to people who are ageing and/or have lifelong

disabilities.

Home Care Service states that it works closely with other community care services to make sure

the customers get the services they need to live at home.

Philosophical base

The aim of Home Care Service is to help people live independently.


Home Care Service provides training to their employees.

Outcomes

Enables people who are aged and/or disabled to remain in their own homes.

Section C contains twelve(12) examples of issues related to planning for end of life, either personally,or the death of a family member, friend or housemate. The section includes nominations that discuss

the issues from a theoretical perspective, tools which may be useful in working with people with disabili-ties and some actual examples of strategies used with people in these situations

C.Palliative Care Palliative Care

andandEnd of LifeEnd of Life

C. Palliative Care and end of Life

Palliative Care and End of Life

New York State Developmental Disabilities Planning Council -Planning for the Future - 1997


58

A guide for families and friends of People with Developmental Disabilities: addressing the importantissue of long term care planning.


Author: New York State Developmental Disabilities Planning Council -

Contact details: Executive Director

Contact details: 155 Washington AvenueSecond Floor, Albany New York USA 12210

Telephone: (518) 432 8233

Website: www.ddpc.state.ny.us


The guidebook Planning for the Future - 1997 covers the basics of financial assets, estate planning,

trusts, employment opportunities, guardianship and other issues which concern families with a

developmentally disabled family member.

The guide states that the aim of planning for the future is to ensure that to the maximum

extent possible their daughter or son with developmental disabilities will have a …happy, stable,

stimulating ,and … rewarding future (New York State Developmental Disabilities Planning Council,

1997, p 7).


The guidebook is a very practical how to model and includes information on:

l Making a plan;

l Government Benefits (USA);

l Taking stock of your situation and financial assets;

l Estate Planning;

l Distribution of Assets;

l Jointly owned property and insurance;

l Trusts;

l Housing Alternatives;

l Guardianship;

l Burial Planning;

l Moving interstate (USA).



59

Cost

Contact New York State Planning Council.


The guidebook is aimed at people of all ages. However, the need for planning is perhaps more

important for the parents and person with a disability as they get older.

Philosophical base

The process of planning for the future is reassuring to the person with a disability and/or their

family members.


The guidebook acts as a how to manual and as such is a training resource.

Outcomes

A more secure future for the person with a disability and increased confidence in the future or

all involved.


Dealing with End of Life - 2000


60

Facing the terminal illness or death of an adult with a developmental disability.


Author: Botsford, A.L. (2000). Dealing with End of Life. In M. P. Janicki ,& EF. Ansello (Eds.). Community Supports for Aging Adults with Lifelong Disabilities(pp. 415-429.10 )

Contact details: Associate Professor, Director of Fieldwork Education, Department ofSocial Work, School of Social and Behavioral Sciences, MaristCollege, Dyson Center 340, Poughkeepsie, New York USA 12601.


This chapter looks at the grief process and how people deal with terminal illness, dying and

death. The following factors are identified as important is considering how people with devel-

opmental disabilities react to loss and grief:

l Learning and experience - experience through participating in family, cultural and religious

rituals enables all people to express and deal with grief and mourning;

l Intellect - a person's intellectual level influences how he or she expresses loss and grief, but

it does not influence whether he or she feels the loss and the ensuing grief;

l Special Risks - a major risk is the extent to which the individual may be dependent on the

person that he or she has lost. The losses can be sudden, multiple, traumatic and sometimes

catastrophic;

l Communication - communication and speech difficulties may give rise to problems in care-

givers and staff recognizing and responding to an individual’s efforts at verbal expression of

grief or need for more information or support. A breakdown in communication may lead

to the person displaying their grief via withdrawal, depression or violent behaviour;

l Family Perceptions - in addition to dependency, ambivalence and guilt are common in

long-enduring family relationships and can complicate the grief and mourning process for

both the family and the individual;

l Staff Perceptions - staff want and need education, emotional support, and assistance in

dealing with end-of-life issues. Frequent exposure to dying and death without proper train-

ing and support reduces the ability of staff to respond effectively and sensitively to people

for whom they are caring.


The text offers some interventions and models to assist people in coping with loss and grief:

l Education - educating people about death is as essential as other areas;




61

l Advance Directives - reviewing the individual's and the family's burial preferences, health

care proxies and wills can promote participation and communication among the family, indi-

vidual, and staff in preparing for the inevitable separation;

l Grief counseling may be an anticipatory approach to help prepare an individual, a family,

staff or other group (residents of a group home) for a long-term illness; to help them cope

with the shock and denial that follow a sudden death; or to support them in the bereave-

ment process;

l Inclusion by participating fully in the grief and mourning process and in all of the social rit-

uals and supports that society offers when someone dies;

l Staff education so that staff are prepared to deal with terminal illness and death;

l Programme models - eg mobile crisis teams; bereavement service; ethics committees or end-

of-life committees.

Cost



The text discusses links between disability and palliative care systems; religious organisations

and other relevant sectors.

Philosophical base

The text discusses the philosophical changes which have occurred in the development of serv-

ices for people with developmental disabilities with particular reference to the inclusion of peo-

ple with disabilities and the recognition of their need to grieve and express their feelings about

the loss of a person close to them.


Staff have diverse roles and responsibilities and relate to individuals and their families in several

contexts. These are illustrated in Figures 1-3 pp 424-427 which provide a systems perspective

on the complex roles, relationships and tasks that agencies and staff encounter in working with

individuals who are dealing with end-of-life issues.

Outcomes

The capacity of agencies to provide humanistic, dignified care to individuals and their families

at the end of life depends on the staff's competence and effectiveness in working with individu-

als, families and systems on end-of-life issues in a community context.


Hornsby Challenge - General Principles around Grieving


62

The organisation has developed some general principles around 'grieving'.for use with consumers

Area Served: Hornsby Area, New South Wales, Australia

Contact: Manager, Hornsby Challenge

2 Rowe StreetEastwood, NSW, Australia 2112

Phone: (02) 9874 8544

Fax: (02) 9874 8870



As people age, there is a greater likelihood that they will have close relatives and friends die.

Hornsby Challenge tries to make sure that if a close family member dies, the person with a dis-

ability gets to see the body as this helps the person to understand that the person has gone and

gives some reality to the concept of death. Similarly, it is important that the person attends the

funeral and is involved in other mourning rituals such as memorial services and wakes.

The organisation has assisted people to make an area of their home into a small memorial

where photos of the deceased person, flowers or other memorabilia are kept where the person

can see them. This helps the person to have a way to indicate if they are feeling sad or want to

'talk' about the deceased person. People who don't have language can still go to that spot and

look at the photos, to take staff to look at the items to indicate their thoughts.


These principles are easily taught to staff and implemented as part of normal routine. Some

relatives do not however agree to the person being involved in the rituals relating to death as

they believe it will be upsetting for them and that they will not understand it. It is important

therefore to negotiate with the family members.

The principles are most easily implemented where people have good relations with their church

and church leaders or other community services that deal with such issues. The organisation

has also used local grief counselors and assisted them in their communication with the person

with a disability.

Cost

There is no financial cost.



63


The organisation's methods for assisting people to make friends and build a social network have

been very important when a person is in need of consoling on the death of a relative. Links

with generic counseling as mentioned above are helpful but require the assistance of staff.

Philosophical base

The organisation believes that people with a disability grieve and can come to understand death

in the same way as anyone else. However, often a person with a disability lacks the language to

express their feelings. The organisation believes it is part of their role, in a natural way to help

people express themselves regarding their feelings of grief and loss.


Staff are not trained counselors and so do not take on this role. However, they can be taught

to look for cues that the person is thinking about their loved one and may need a little space or

may want to engage with them about it. Staff are instructed to just sit with the person and

acknowledge what is happening by statements such as "you're thinking about mum? It's very

sad, mum's died. You miss her." This may then be an opportunity to see if the person wants

to visit the grave etc. Staff need to be flexible.

Outcomes

Given support and opportunities to grieve and remember the person who has died, people with

a disability learn to cope with the death of a loved one in the same way as anyone else does.


Department of Ageing, Disability & Home Care NSW - DisabilityServices, Metropolitan West - Last Wishes


64

A resource kit for use by staff with consumers and/or their families to get people to think aboutand/or plan their deaths and funerals. Includes a staff checklist of "what to do" when a consumerdies.

Area Served: Metropolitan West, Sydney

Contact: Assistant Manager

Phone: (02) 4731 6222

Fax: (02) 4721 4119



The purpose of the package is to ensure that the difficult subject of death is handled by staff

members with due respect and in a professional manner. The package is to be used in conjunc-

tion with Department Of Ageing, Disability and Home Care, Disability Services procedures

covering the death of a client in care. The induction manual (of the group home/accommoda-

tion) should have a section identifying strategies to use when a client dies. The NSW Disability

Service Standards and Departmental Critical Incident formats will also provide a guide to staff.


Last Wishes (funeral plans) are to be discussed with the client/family and persons responsible

possibly as part of the Individual Planning process. The aim of the plan is to try and have an

ordered process if/when a death occurs.

As there are many matters to be dealt with at the time of a client's death, a checklist has been

devised to assist staff to know what to do at this time.

Providing information and completing the funeral plans is entirely voluntary on the part of

client/family member/persons responsible.

The Last Wishes Plan contains:

l Personal information including next of kin/other family contacts;

l Funeral Service Instructions including burial/cremation; type of service (religious/secular),

preferences for flowers, music, type of coffin, clothing etc.

l Persons to be notified;

l Funeral payment details;

l Estate information (whether person has a will, where it is kept, who the executor/s are,

solicitor's contact details)



65

l Banking details;

l Special Instructions and Information

The Disabled Client's Death Notification Form includes details about the client, date of death,

their disability, medical conditions, medical practitioner, functional limitations. It then details

any associated significant recent events, the nature and circumstances of the death and any

issues arising from the death. A draft copy of a letter to be sent to the Community Services

Commissioner notifying him of the death is also attached.

Cost

The manual and checklist have been devised by DADHC, Western Sydney. They are not for

sale.


Not specifically for use with only aged people however, it would be advisable to have a plan

developed as the client ages.

Philosophical base

To ensure that the client/their family/person responsible's wishes are carried out when a person

dies.


There are implications for staff training in how staff approach the client/family/person respon-

sible to complete the plan. Also staff support and counselling are required when a client dies in

care.

Outcomes

A package of information which staff can use at the time of a client's death to ensure that the

person's wishes are carried out and to provide staff with guidelines as to how to proceed

if/when a death occurs.


WorkCover: New South Wales - Managing Loss and Grief in theAged Care Industry - August 2001


66

A resource guide for use by staff working in the aged care industry.

Area Served: New South Wales, Australia

Contact: WorkCover Publications

Phone: Hotline: 1800 658 134; Or information officer 13 10 50

Fax: Faxback service: 1300 131 156

Website: www.workcover.nsw.gov.au


This guide was developed to assist managers and other workers in the aged-care industry to bet-

ter understand the process of work-related grief and how it can best be managed. While it has

been developed for the aged-care industry, it has applicability for workers in supported accom-

modation for people with disabilities.

The objectives of the guide are to:

l Assist managers and staff in understanding that grief is a normal response to loss including

death and dying;

l Help workers recognise grief reactions in themselves and their co-workers;

l Prepare workers to offer effective support in grief situations;

l Provide ideas that will help create a supportive work environment;

l Promote an understanding of the importance of grief education to help people cope;

reduce confusion and isolation; help reduce long-term emotional withdrawal; help people

know what is normal;

l Facilitate the development of policies and practices that enable recognition of grief and

appropriate intervention when necessary;

l Provide a list of resources and contacts that can assist individuals and organisations to man-

age grief.


The guide is divided into four parts:

l Part 1: Introduction - Background; purpose; how to use this resource;

l Part 2: Managing Loss and Grief - An Organisational Perspective, including a framework

for planning; identifying the needs of your staff; barriers and opportunities; developing and

implementing a workable policy; providing a supportive work environment; providing ade-

quate and appropriate training; planning for death and other critical events; special groups to

consider and cultural issues;



67

l Part 3: Information on Loss and Grief for Managers/Employers - Including knowing

what is grief and therefore what is usual; stress related to loss and grief; from care to closure

and communication skills;

l Part 4: Information on Loss and Grief for Employees - Including knowing what is grief

and therefore what is usual. Building support for yourself and others with whom you work.

Cost

No cost. Available on request.


Developed for the aged-care industry but applicable to residential care/supported accommoda-

tion for people with disabilities. DADHC, Metropolitan West utilised information from this

guide in developing their Last Wishes (see prior entry).

Philosophical base

Literature reviews and interviews with those working in the aged-care sector indicated that loss

and grief experienced by those who work in aged-care can have a significant impact on mental

and physical health and well-being. The capacity of workers to carry out their duties and to

function normally at home is often affected. The aim of the document is to address the

responsibility of employers to ensure the health, safety and welfare of their employees, under

Section 15 of the Occupational Health and Safety Act 1983. The document adopts a risk man-

agement approach of identification, assessment and control, i.e. identify the problem, assess the

risks and take appropriate action to eliminate identified risk factors where practicable.


Part 2: Seven pages (22 - 24) discusses the importance of initial and on-going training for staff

in aspects of grief management.

Elements to cover in training include:

Defining terms; Loss and reactions to loss; Working with frail-aged and dying people; Skills

development (what to say/what to do); The caregiver's perspective/caring for yourself;

Relationship issues and expressing feelings; The grief of relatives and other residents; Dealing

with stress; Meditation and relaxation techniques; Defining What is my role?; Building up per-

sonal management skills.

Appendix A: Provides a list of training and support resources and

Appendix B: Provides Other Contacts and Resources in Loss and Grief.



68

Outcomes

A reduction in the workers' compensation claims for mental disorders under the WorkCover

Scheme for people working in the aged-care sector.


Hospitaller Order of St. John of God - People with a LearningDisability: Bereavement & Loss - July 1999


69

A booklet to promote awareness in family members and staff of how people with a learning disabilityexperience, react to and cope with bereavement and loss in their lives.

Area Served: The Republic of Ireland

Contact: Programme Development DepartmentHospitaller Order of St. John of GodProvincial Administration, Hospitaller HouseStillorgan, Co. Dublin, Ireland

Phone: (01) 283 1201

Fax: (01) 278 3024



The booklet is aimed at assisting people with learning disabilities of all ages to cope with

bereavement and loss in their lives. It acknowledges that losses occur throughout people's lives

for a variety of reasons.


The booklet is divided into two main sections:

Section 1: An overview of the bereavement process

l The bereavement process including reactions, common stages, movement through the

process, recurring reactions, acceptance;

l Abnormal grief reactions including delayed grief, chronic grief, mental illness, treatment.

Section 2: Bereavement & loss in the lives of people with a learning disability

l Causes of loss in the lives of people with a learning disability including staff movement,

peer movement, programme changes, residential changes, loss of a favourite possession;

l Bereavement and loss and people with a learning disability including how bereavement and

loss are shown, factors associated with how the person responds to bereavement or loss;

l Supporting someone with a learning disability through the bereavement process including

involvement in the rituals, communication about loss, acknowledgement of pain, maintaining

contacts and consistency;

l Resources for helping people with a learning disability who have suffered a loss or bereave-

ment including family and friends, community support groups, key workers, social workers,

pastoral care/chaplains, psychologists and psychiatrists, printed and video resources.



70

Cost

No cost.


Booklet is not specifically aimed at ageing people however, it is adaptable across age ranges.

Philosophical base

The booklet aims to promote the rights of people with a learning disability to be meaningfully

supported in their experiences of bereavement and loss, regardless of the nature of that loss.


The booklet is used in all staff induction sessions.

Outcomes

The booklet was developed as one outcome of a number of seminars and discussions on the

emotional and personal issue of bereavement and loss for people with a learning disability.


National Council on Intellectual Disability - Life After Death: PreparingPeople with Intellectual Disability for Bereavement and Loss - 2000


71

A resource guide for families, friends and support staff with advice to counselors and researchers.

Area Served: Australia

Author: Smith,D. (2000) Life After Death: Preparing People with Intellectual Disability forBereavement and Loss . Canberra: National Council on IntellectualDisability.

Contact: Information OfficerNational Council on Intellectual Disability (NCID)PO Box 771, Mawson ACT 2607

Phone: (02) 6296 8858

Fax: (02) 6296 4488



This book assumes that people with intellectual disability understand death and …it is their

right to be included in bereavement and grieving processes (NCID, p. 7).

The aim of the book is to give families, friends and supporters of a person with an intellectual

disability, some ideas and strategies to better prepare them for the life experience of dying,

death, loss and grief.


The book is divided into seven chapters:

Chapter 1 Death and Disability: Double Taboo - the need to grieve, sources of grief;

Chapter 2 What is Death? - experiences of death, religious beliefs, living situation;

Chapter 3 Understanding Death - what happens to dead people?, communication,

acquiescence and inexperience, overcoming problems

Chapter 4 Bereavement Experiences - five case studies, memories, how and when to

tell, 'putting it off';

Chapter 5 Personal and Emotional Strategies - "good grief", permission to grieve, nor-

mal grief reactions, letting go, time to grieve, history of past losses, unre-

solved grief;

Chapter 6 Education: Coping with Death - simple guided mourning, when is grief

abnormal?, opportunities for death education;

Chapter 7 Practical and Environmental Strategies - financial, residential and day

activity planning and emotional support.



72

The book also includes a Reading List and Bibliography.

Cost

Order via contact details above. This sixty five (65) page, soft cover book costs $17.45.


The book is written with reference to people with intellectual disabilities of all ages.

Philosophical base

A person with an intellectual disability has the same needs as other people, to know about death

and how to cope with bereavement both personally and in relation to helping others.


The book can be used as a training resource with family members and staff working with peo-

ple with intellectual disabilities.

Outcomes

A useful resource to get families and staff thinking about bereavement and loss and preparing

both themselves and the person with a disability for death.


Disability Services (South) Tasmania - Gesture/ CommunicationDictionaries


73

A simple three-column gesture/communication dictionary for indicating pain or discomfort, for use bynon-verbal people with disabilities accessing a hospital or hospice.

Area Served: Tasmania, Australia

Contact: Social WorkerResource Team, Disability Services (South) PO Box 96 Moonah, Tasmania, Australia 7009

Phone: (03) 6230 7600

Fax: (03) 6230 7605



An inability to have one's pain or discomfort recognised and relieved is distressing for both the

person with a disability and the nursing staff caring for them. This simple gesture/communica-

tion dictionary has been devised in an effort to alleviate mis-understandings and distress.


The gesture/communication dictionary consists of an A4 sheet of paper with three columns

headed:

When the person does………..

What this gesture means……………

How I respond as the support person………………

The hospital/hospice staff are asked to write down, in the first column, which gestures they see

the person with a disability making. They then ask visiting family member/s and/or staff from

the support organisation, to fill in details on the other two columns.

Cost

Cost of an A4 sheet of paper!


This system is applicable in settings where the non-verbal person with a disability is not well

known by the people providing them with physical care. It may be a short term stay in hospital,

respite care or it may be in a hospice setting where the person has gone to die.



74

Philosophical base

Communication, particularly of pain or discomfort, is a basic human necessity. A person with a

disability who is non-verbal has often developed a system for communication of fundamental

needs which people who are close to the person understand but which remain a mystery to those

people who are not well known to the person.


No training is required. However, care staff would require the good will to wish to understand

the person with a disability and to follow through in completing the sheet.

Outcomes

The potential outcomes for the non-verbal person with a disability are to have their needs for

pain relief or discomfort met in a timely and appropriate manner. The outcome for

nursing/caring staff is to meet the person's needs with some degree of confidence that they are

interpreting those needs correctly.


Disability Services (South) Tasmania - Seeing is Believing:Bereavement Support in Practice - paper presented at the ASSIDNational Conference 2001.


75

Inclusion of people with developmental disabilities in the rituals associated with bereavement.

Area Served: Tasmania

Author: Baxter, V. (2001, November). Seeing is Believing: Bereavement Support in Practice .Paper presented at National Conference of the Association for theScientific Study of Intellectual Disability, Participation & Citizenshipin the Wider World, Melbourne, Australia

Contact: Social WorkerResource Team, Disability Services (South); PO Box 96, Moonah, Tasmania, Australia 7009

Phone: (03) 6230 7600

Fax: (03) 6230 7605



Many adults with intellectual disabilities have been cut off from early death education experi-

ences, particularly if they grew up in institutions. Presumptions have often been made that

"they just wouldn't understand" and that participation in the rituals surrounding the death of a

loved one would be too painful and confronting for the person with a disability, and for other

members of their family.

This paper discusses the need for service providers to…navigate our way through the belief

and value systems of an older generation [of family members], in order to obtain the best out-

come for our client [the person with a developmental disability]. There is a need to explain to

relatives that participation in the rituals will help the person with a disability to understand the

finality of death and enable them to commence working through their grief. It may also assist

in avoiding behaviours caused by the frustration of not knowing what has happened.


Important reminders for staff involved at this time:

l Everyone's emotions and reactions are heightened and things can be said which are later

regretted;

l Staff's own emotional reactions are also likely to be heightened due to their proximity to

grieving people (especially if they have suffered a loss themselves);

l Staff need to extend particular tolerance and courtesy, proceed with tact and caution, avoid

snap judgements and try hard to concentrate on negotiating to have client needs met.

Inclusion practices which have been shown to assist the person with a disability express their

emotions and cope with grief and loss:



76

l Support by a staff member who knows the person with a disability well so that the family

can concentrate on their own grieving;

l A person with a disability's understanding that death has occurred may come only gradually

and through diverse means of communication. That understanding may sometimes be par-

tial and difficult to assess;

l The use of photo cue cards and flip charts with accompanying symbols may be useful to

convey information to people with severe intellectual disabilities and limited communication

skills;

l Development of a chat book about death, the deceased and the rituals;

l A private, individual body-viewing farewell (following all of the above). Preferably two staff

members should attend to support and debrief each other as well as the person with a dis-

ability. Seeing the difference between a living, moving, changing, expressive face and a total-

ly still one with a fixed, though tranquil expression, is to know that a profound change has

taken place. The body-viewing farewell is also private and personal and so loud or dis-inhib-

ited behaviour will not offend other people. The person with a disability can be in charge

and there are often less time constraints than at the funeral. It may also be good preparation

for attendance at the funeral and wake.

l Attendance at the funeral and wake;

l Assistance to construct memory books or boxes containing visual and tactile reminders of

the loved person who has died eg may include brochures and photos of places people have

visited together, photocopies of favourite music tapes, labels from preferred foods, a lock of

hair, a snippet from familiar slippers, shirt or skirt held within an adhesive photo album, dis-

play folders or a box.

Cost

Limited financial cost involved.


These strategies apply across all age groups however, people with disabilities who are ageing are

perhaps more likely to lose (or have lost) parents and other family members or to be living with

other aged people who may die.

Philosophical base

Dignity of people with disabilities and attention to their feelings and emotions.



77


Ideally this topic is one which should be included in staff training so that staff are prepared

prior to a death occurring.

Outcomes

Better outcomes for people with disabilities in terms of dealing with grief and loss.


Disability Services (South) Tasmania - When a Death Occurs:Information and Guidelines on What to do - April 2001


78

A brief, practical manual for use by service providers in the event of a client's death.

Area Served: Tasmania, Australia

Title: Disability Services (South) (2001). When a Death Occurs: Information andGuidelines on What to do . Hobart, Tasmania: Department of Health &Human Services.

Contact: Coordinator,

Resource Team, Disability Services (South),PO Box 96, Moonah, Tasmania 7009

Phone: (03) 6230 7600

Fax: (03) 6230 7605



The guide is designed to:

l Raise staff awareness of grief and bereavement issues for clients;

l Reduce staff anxiety by providing relevant information about sensitive, feared issues;

l Demystify the processes surrounding death.


The guidelines are divided into three main sections:

Section 1 Planning and Preparation

l Planning and training;

l Palliative Care;

l Planning a Funeral;

l Grief Awareness;

l Wills.

Section 2 When a Death Occurs

l Initial Response;

l Medical Assistance;

l Following the Initial Response;

l Cause of Death;

l Police;

l Coroner's Clerk;



79

l Removal of the Body.

Section 3 Things to Consider Following the Event

l Funeral arrangements;

l The Grief Process;

l A Coronial Inquiry;

l Settlement of the Estate;

l Evaluation and Review.

The guide includes a section on Key Support Services and Contact Points in Southern

Tasmania. This section could be adapted for other areas/states.

Cost

No cost.


Loss and grief can occur at any age, however the older a person with a disability is the greater

the likelihood that they will experience the death of a parent or other person close to them and

the greater the possibility of their own death.

Philosophical base

Dignity of people with disabilities and attention to their feelings and emotions.


Ideally this topic is one which should be included in staff training so that staff are prepared

prior to a death occurring.

Outcomes

Better outcomes for people with disabilities in terms of dealing with grief and loss.


Ability Options - Lifestyle Options Division Support for Person with aTerminal Illness


80

Additional in-home support to a person with a terminal illness.

Area Served: Greater Western Sydney Area, Australia

Contact: Manager - Lifestyle Options Division Ability Options Ltd.72 Railway Parade, Granville,N SW, Australia 2142

Phone: (02) 9637 1944

Fax: (02) 9637 1537



A 52 year old man suffering from a terminal illness was cared for in his own home environ-

ment. Support was in place at this home and additional services were brought in to make his life

as comfortable as possible. He was able to care for himself during the early stages of his ill-

ness, however as he entered the final stages he required additional staff support to deal with his

medications.


In order to provide ongoing support the organisation set up the following:

l Assessment to establish his support requirements (through the Hospital);

l Weekly visits to his local GP;

l Monthly visits with his specialists;

l Meals on wheels 5 days per week;

l Community Nursing service.

Final Stages

l Respite organised for short periods;

l Access to the Palliative Care team from Westmead Hospital both for the staff and service

user.

Cost

Cost to the service user for meals on wheels. Community nursing and palliative care were pro-

vided free of charge to the service user. Staff support was coordinated through current

resources.



81


Access to generic services available to the wider community e.g. Meals on Wheels, Home

Nursing, medical services, Palliative Care services.

Philosophical base






Staff were given additional training and support in working with a person with terminal illness.

The palliative care team was used to provide the expertise in caring for a person in the final

stages of their illness. Training was also provided in dealing with grief and loss for both staff

and service users.

Outcomes

l The person was able to remain at home until the time of his death;

l The staff were provided with the knowledge and support to deal with this situation;

l Other service users were given assistance in dealing with grief.


Disability Services, Queensland - Quality Lifestyle for a Person withan Intellectual Disability and a Terminal Illness as their PhysicalHealth Care Needs Change.


82

A flexible service is designed around the person to meet the challenge

Area Served: Queensland, Australia

Contact: Unit ManagerDisability Services PO Box 1058Toowoomba, Queensland , Australia 4350

Phone: (07) 4659 4999


The aims of Disability Services, Queensland are to:

l Provide a quality lifestyle for people with disabilities as their physical and health needs

change;

l Promote personal advocacy by the person with a disability and by their family on their

behalf;

l Provide flexible services to meet the challenges of providing a quality service;

l Manage personal financial budgets for each client to meet their changing lifestyles;

l Promote/access quality medical support;

l Access government support by way of grants to keep people at home where this is a practi-

cal option.


An example of these aims in practice was given by the service (the name of the person has

been changed).

Peter was a person with an intellectual disability who was supported to live at home during his

long illness with renal failure (Peter died in 2000). Peter was the co-owner of his own home

which he shared with four other adults with intellectual disability in their 30's and 40's. The

house was an Alternative Living Service and was staffed 24-hours a day.

When Peter was diagnosed with a terminal illness, his life was kept 'as normal as possible' with

the environment adapted to meet his changing needs. The medical practitioners, family and res-

idential staff worked together in providing quality care to Peter.

Some of the comments made by staff and family members:

Right up until the day he died, he always had something planned to look forward to.

Peter loved wearing brand label clothing and this practice continued during his illness.



83

Cost

Disability Services, Queensland grant to keep people who are ageing or suffering from a termi-

nal illness at home whilst ever this is a practical option.

In the case of Peter, his finances were managed by the Public Trustee of Queensland who, as

Peter’s financial advocate, supported the expenses necessary to provide him with quality medical

support.


Medical and other health related professionals worked together with residential staff to provide

clear treatment goals and practices which residential staff were involved in implementing.

Peter’s Personal Futures Plan identified over a five year period, his current situation, aims, wants

and ambitions and limitations. Yearly goals were set from this plan. Peter, his family, medical

practitioners and residential staff were all involved in developing the plan and setting the goals.

Philosophical base

Maintaining 'as normal a life as possible' within the person's own home.


Some level of specialised training would be required on the part of residential staff to imple-

ment medical procedures, dispense medication etc. Need to work in conjunction with health

care professionals.

Disability Services, Queensland, Toowoomba has now set up a task force to gather information

for future planning for the ageing population within their residential services.

Outcomes

A person with an intellectual disability who was ageing and/or suffering from a terminal illness

was able to be cared for, and die, in his own home.

Section D includes six (6) examples relating to issues and needs of people with dementia. Entriesinclude services which are designed for all people with dementia, which may be adapted to people with

life long disabilities who develop dementia, as well as tools/strategies which have been designed specifical-ly for people with disabilities who develop dementia. Specific examples relate to people with Down

Syndrome who may develop dementia earlier in life than other people

D.DementiaDementia

D. Dementia

Dementia

Department of Ageing Disability and Home Care (DADHC) -AtHome with Dementia - March 2000


85

Practices, products and resources suitable for all people with dementia and their carers.

Area Served: New South Wales(NSW), Australia

Title: Office for Ageing (2000). At Home with Dementia. Sydney, Australia: DADHC

Contact: Policy Coordinator, Future Directions for Dementia Care & Support in NSW. 2001 -2006Office for Ageing, DADHC

Phone: (02) 8270 2229

Fax: (02) 9367 6890

Website: http://www.dadhc.nsw.gov.au (follow links to publications)


This publication is not aimed at the target group of people with lifelong disabilities, however, it

contains information about practices, products and resources, which are applicable in some cir-

cumstances to the target group.

The publication is a practical manual on how to modify the home environment for a person

with dementia. It presents a range of possible solutions to problems commonly faced by peo-

ple with dementia living at home. The information is intended primarily for carers but is also

useful for professionals supporting the carer and the person with dementia.


The manual is divided into five chapters:

Chapter 1: Introduction: Dementia and the Environment

Chapter 2: Problem Solving

Chapter 3: Changing the Environment

Chapter 4: New Housing or Renovation

Chapter 5: Resources

References.

Each section has the following structure:

l Aims;

l Problems and concerns;

l Checklist;

Dementia


86

l Possible solutions;

l Information about products and equipment, including an indication of cost.

Cost

The manual is available from the Department of Ageing, Disability and Home Care, Level 13,

83 Clarence Street, Sydney 2000 at a cost of $20. Order form can be downloaded off the web-

site and posted or faxed to (02) 9367 6890. A full copy of the manual may be downloaded off

the website given above - it will take 10-15 minutes to download.


Designed for use in the general aged care sector - able to be adapted to the disability sector.

Philosophical base

The overall aim of the suggestions/resources contained in the manual for someone with

dementia is to make it possible for the person to remain living at home.


The manual lists resources available in the dementia, community services, home modifications

and various government departments and schemes aimed at assisting people who are ageing

and/or have dementia.

The manual also lists Ideas for Gifts aimed at contributing to the comfort of the person which

family members or friends might like to buy for the person with dementia.

Outcomes

The manual is an excellent, practical resource for carers as well as for the range of community

workers who provide services to people with dementia living at home.

Dementia

Department of Ageing, Disability and Home Care, (DADHC) NSW- Better Building Better Care - July 2000


87

A planning guide to improving an aged care facility for people with dementia.

Area Served: New South Wales, Australia

Title: Ageing Issues Directorate (2000). Better Building Better Care. Sydney, Australia: Department of Ageing, Disability and Home Care

Contact: Ageing Issues DirectorateDepartment of Ageing, Disability and Home Care Level 13, 83 Clarence Street, Sydney, NSW Australia 2000

Phone: (02) 9364 6963 or 9367 6811

Fax: (02) 9367 6890


Website: http://www.dadhc.nsw.gov.au


Caring for people with dementia has become a major focus of all residential facilities for ageing

people. This publication describes three pilot programs in residential facilities and the expertise

of a number of organisations. It describes how to create a place which is calm and homelike,

where staff enjoy working with residents in a personalised way.


The publication describes each step needed by an organisation to change both the physical

building and the way care is provided. The guide begins by describing a good practice approach

followed by a step-by-step outline:

l Getting ready to start;

l Setting broad objectives;

l Investigating and gathering information;

l Identifying needs;

l Developing a good dementia care concept;

l Testing the concept in a feasibility study;

l Planning the implementation of the project.

This guide looks at residential aged care settings and some of the strategies and recommenda-

tions would be useful to adapt to a group home/accommodation setting for people with devel-

opmental disabilities who have dementia.

Dementia


88

Cost

Can be downloaded off the web-site at no additional cost (56 pages).


Opportunities to liaise with ageing service sector.

Philosophical base

The overall objective of the guide was to:

l Improve the quality of life of residents with dementia

l Form a model of dementia care that has a holistic approach to meeting quality of life needs.


Training implications for staff are discussed.

The cost of changes is also covered in Section 6.3: Cost the design (pp 33,34).

Outcomes

Specific outcomes for each of the three pilot projects are detailed. The good practice approach

described in the guide is about creating an environment that makes sense to people with

dementia:

l Getting to know residents to find out what they really want and need;

l Building quality relationships between residents and staff;

l Personalising the way care and services are provided;

l Consulting and involving management, staff, family and carers in working out how this

approach can be introduced and then improved upon;

l Ensuring management and senior staff are committed to leading changes and improve-

ments;

l Making a place that is quiet and calm with a warm and homely feel;

l Developing ways to change that are affordable;

l Working towards having no physical or chemical restraints;

l Ensuring residents' special care needs are frequently assessed;

l Training staff to develop specialist skills and competencies in dementia care;

l Linking up with people who are specialists in dementia care for expert advice.

Dementia

Dementia Development Services Centre, University of Stirling,Scotland - Different Realities: A guide for staff working with peoplewith Down's Syndrome and dementia


89

This guide is targeted at staff in day centres, group homes and residential homes.

Area Served: United Kingdom

Contact: Dementia Services Development CentreUniversity of Stirling, Scotland, Stirling FK9 4LA, Scotland,UK

Phone: (01786) 467740

Fax: (01786) 466846


Website: http://www.stir.ac.uk/Departments/HumanSciences/AppSocSci/DS/publications/training.htm


The guide is a training manual for staff working with people with Down Syndrome and

Alzheimer's Disease. It aims to:

l Provide useful information;

l Acknowledge some common anxieties and fears;

l Help you better understand the way the world looks and feels for a person with dementia

and Down syndrome;

l Help you develop effective ways of identifying the needs of the people with whom you

work;

l Help you work more effectively to met those needs;

l Help you develop ways of working which reduce the stresses involved in your work.


The guide can be used by an individual (eg. as part of an induction programme into a group

home where a person/s with dementia is living) or as part of a small group (eg during house

staff meetings where a person/s in the house has been diagnosed or is suspected of having

dementia). The guide provides self-paced learning sequenced so that easier material is under-

stood before more complex material is covered.

Cost

Nine pounds and 10 pence - ordered on the above address. Bank draft to be sent.


Provides information about Alzheimer's and other dementias as well as information about

Down Syndrome, depression and associated diseases.

Dementia


90

Philosophical base

Promotes the dignity of the individual.


The guide is a training resource. It includes case studies; focus questions and formats to be

utilised.

Outcomes

No evidence was provided regarding the effectiveness of the training guide.

A three volume guide to the process of observing changes and evaluating decline in individuals with anintellectual disability.

Area Served: South Australia, Australia

Contact: Manager, Accommodation Resource TeamMinda IncorporatedPO Box 5, Brighton, South Australia, Australia 5048

Phone: (08) 8422 6200 (switch) or 8422 6338 (direct)

Fax: (08) 8422 6330



The three volumes provide a clear guide to:

l the process of observing changes and evaluating decline in individuals with an intellectual

disability;

l responding to an individual's changing needs;

l providing appropriate support and care;

l contributing to the improving quality of life of people with intellectual disabilities and

dementia;

l providing detailed information to professionals for differential diagnosis and possible inter-

ventions.


The three volumes are designed to be used as practical guides for information and training pur-

poses:

Volume 1 Literature Review and Survey of Carers

Volume 2 Best Practices in Aged and Dementia Care

Volume 3 Assessing Change

The resource has been used in all states of Australia and within NSW has been adapted for use

by The Lorna Hodgkinson Sunshine Homes (see subsequent entry).

Cost

Cost available on request to the organisation.

Dementia

Minda Incorporated - Aged & Dementia Care Issues for Peoplewith an Intellectual Disability11


91


Dementia


92


The third volume of the guide provides a Broad Screen Checklist of Observed Changes cover-

ing:

l Health;

l Physical Competencies;

l Sensory Integration;

l Perceptual/Cognitive;

l Social Emotional;

l Activities of Daily Living.

This combines information from the general ageing population and specific items to be aware

of for people with intellectual disabilities.

Philosophical base

The development of healthy and active old age and how individuals can continue to use talents

in a creative and purposeful manner.


The second guide, Best Practices is for use as a training resource. The topics covered are:

l Health (self care, continence, physical diseases/problems, medication);

l Physical decline (early dementia, locomotor system, sensory loss - vision and hearing, loss of

joint awareness, loss of touch, loss of swallow, central organisation or praxis, advanced

dementia);

l Behaviour mood swings (depression, memory loss - confusion; aggression; wandering, sleep

patterns, hallucinations, illusions, delusions and unwarranted suspicion, obsession, disinhibi-

tion);

l Communication (receptive, expressive, interdependence, touch);

l Social Aspects (self esteem, choice, self confidence, dignity, communication,

relationships/social networks, personality/identity);

l Environment (physical, emotional, motivation/stimulation, recreation, routine);

l Alternative Therapies (reality orientation, validation therapy, resolution therapy, reminiscence,

touch therapies, music).

Outcomes

The guides have been used by a number of different organisations in states throughout

Australia.

Dementia

Crowle Foundation - Dementia specific group home


93

Establishment of a community based group home for three people with intellectual disabilities who alsohave dementia.

Area Served: Ryde, Sydney, NSW, Australia

Contact: General ManagerCrowle Foundation P.O. Box 1020Meadowbank, NSW Australia 2114

Phone: (02) 9809 3644

Fax: (02) 9807 1361



Residents live in the purpose built home until they need a support level of a kind and/or extent

that the service is unable to provide. Staff is available all of the time that the residents are at

home or participating in community activities. The design of the house and the staffing struc-

ture can be modified as the nature and type of support required by residents' changes.


The model of support has two key features:

l Home design makes behaviours (such as wandering or confusion) less of a problem and

enables one staff member, if this level is appropriate, to provide support and so minimise

costs;

l Staff roles, staff training, and roster consistency are designed to maintain stability in the

overall environment.

The accommodation is provided in proximity to prior accommodation location so the residents

can maintain their familiar links with friends, community activities, etc.

Cost

Estimated annual operating costs $279,324 as at April 2002.


The service is the result of a cooperative research design between the organisation and the New

South Wales Department of Housing.

Dementia


94

Philosophical base

l Support is provided to individuals, not the group;

l Support is tailored to each resident's needs and wishes;

l The service system requires programme accountability and contains systematic reviews.


The service provides the usual staff training for employees working in community settings but

provides additional dementia specific training.

Outcomes

The two main outcomes have been:

l Initial reduction in the negative indicators of dementia. In three of the four residents who

have lived in the house their indicators of dementia (such as wandering, confusion, etc) have

initially reduced. In a period of 1 to 2 years these indicators have gradually returned to pre-

placement levels. One resident's behaviour and health deteriorated greatly at the time of the

initial move and this person was relocated to nursing home accommodation within five

months.

l The service has successfully provided community accommodation with quality of life bene-

fits to three residents with dementia.

Dementia

The Lorna Hodgkinson Sunshine Home - Video on Dementiaand Intellectual Disability


95

"What's Happening to My Friend Mary?" is a package to be used with people who have an intellectu-al disability to help them to understand the changes they may see in friends or family members if theydevelop dementia.


Title: The Lorna Hodgkinson Sunshine Home (2000). What's Happening to My Friend Mary. [video] Sydney, Australia: The Lorna Hodgkinson Sunshine Home

Contact: Information OfficerNational Council for Intellectual DisabilityPO Box 181, Fyshwick, Australian Capital Territory Australia 2609

Phone: (02) 6296 4400


This is a package to be used with people who have an intellectual disability. It has been devel-

oped in response to the recognition that it is difficult for people with an intellectual disability to

understand the changes they may see in friends or family members if they develop dementia.

By increasing the level of understanding increases the level of support of the people around

the person with an intellectual disability who has Alzheimer's Disease. The stress levels of

everyone concerned can be decreased through awareness of the situation facilitating the devel-

opment of a supportive environment.


The package is a very practical tool for explaining the disease and resultant behaviour to people

with intellectual disabilities.

Cost

The cost of the video is $42.45 (Australian) that includes postage and GST. At present the

video is only available until the end of June 2002. NCID may make it available again after six

months. If interested, discuss this with NCID on the contact details above.


The video was developed in consultation with the Aged Care Assessment Team at Royal North

Shore Hospital, the Alzheimers Association of New South Wales and the Medical Research

Institute at Prince of Wales Hospital. These facilities are located in Sydney, Australia.

Dementia


96

Philosophical base

Providing people with intellectual disabilities with knowledge and the means to understand

changes that are occurring in others around them.


The package includes a video and a handbook, which contains information, discussion points,

teaching notes, hints and prompts. The package provides a tool for staff to explain the com-

plexities of dementia and associated conditions to people with a disability in a way they can

understand.

The package has been developed with the aim of assisting people to understand:

l Information about Dementia (of the Alzheimer's type);

l Why their friend/family member has changed;

l Why they need help with many of their activities;

l Why they behave strangely;

l Why they may eventually stay in bed all the time;

l What help they can give;

l Strategies for helping their friend/family member with feeding, dressing and guiding to

places they need to go;

l Acting as an advocate by telling a carer their friend/family member needs help;

l That they need some reassurance and guidance;

l Encouragement to talk to someone about their friend/family member's Alzheimer's disease.

Outcomes

The video and handbook have been used on a number of occasions within various accommo-

dation settings managed by the service. The package has been found to have positive benefits

for people with disabilities in assisting them to understand what is happening for their

friend/housemate who has dementia.

The package also provides the staff working in these situations with a resource to assist them to

present the information and issues in an appropriate manner that will be understood by people

with disabilities.

Section E contains five (5) examples of generic aged care services which maybe of interest and use topeople working in the disability sector.

E.Aged CareAged Care

ServicesServices

E. Aged Care Services

Aged Care Services

The Aged and Community Services Association of New SouthWales & Australian Capital Territory Inc. (ACS)


98

ACS provides a comprehensive, one-stop shop for not-for-profit member organisations and those for-profit organisations that join the Industry Advice Scheme.

Area Served: New South Wales & Australian Capital Territory

Contact: Policy Officer Aged Care & Community Services Association of NSW & ACTIncoporated (ACS)

Phone: (02) 9799 0900

Fax: (02) 9799 0800

Website: http://www.agedservice.asn.au


The Aged and Community Services Association of NSW & ACT Inc. (ACS) is a registered

industry organisation of employers who provide community and aged care in the community

for the non-profit, charitable sector. The ACS is a representative organisation. It represents

members' views politically at a Commonwealth and State level, either directly in its own right or

indirectly via Aged and Community Services Australia (ACSA). It is the only organisation in

NSW or ACT to cover residential care, self-care and community care.


Services Listed Include:

l General Products - specifically created for aged and community care service providers and

the relevant downloadable order form;

l On-Site Training - ACS training programmes can be tailored to meet the need of the organi-

sation's staff and delivered on-site;

l Traineeships;

l Presentations - ACS Learning Centre conducts a number of presentations to groups on vari-

ous training and development topics;

l Consultancy - an advisory service is available to ACS members on a variety of management,

government policy and quality systems issues, together with training and development pro-

grammes;

l Group Facilitation for Teams - interactive workshops for teams can be developed and tai-

lored to meet the needs of the team;

l Mediation - Aged & Community Care Mediation Service, available to assist in resolving

operator and resident/client or other disputes.

Aged Care Services


99

Cost

Costs vary - available on the website or on request.


Specifically aimed at the aged care sector however, could be utilised across ageing and disability.

Philosophical base

To facilitate quality care in the aged sector in NSW & ACT.


Wide range of training programmes available. Two training programmes may be particularly

relevant to the disability sector:

l Workplace Loss and Grief - staff reactions to and coping strategies for the death of people

in aged care;

l Palliative Care - consider end of life issues, practical and ethical including pain management.

ACS also hosts an annual Community Care Conference which deals with and explores the most

pertinent and relevant issues that affect Home and Community Care and Community Aged

Care Package service workers. Details on the conference may be accessed on the website.

Outcomes

Organisation provides representation for people working in the aged care sector in NSW &

ACT.

The organisation has formed a Working Group with the National Council on Social Services

(NCOSS) and ACROD to consider the issues for ageing people with disabilities. The Group

produced a discussion paper and commissioned a survey around this issue with a view to devel-

oping an initiative. The Working Group would welcome input from interested

individuals/organisations.

Aged Care Services

Aged & Community Services Australia - In Their Shoes - Caringfor Residents as Individuals12


100

A book to help with the orientation of all new staff, particularly carers, and in-house training ofexisting staff in residential aged care facilities.


Contact: Flanagan, P & Stoyles, M.(2000). In Their Shoes- Caring for Residents asIndividuals. A guide for all staff working in residential aged care . Melbourne,Victoria: Aged & Community Services Australia.Aged & Community Services Australia (ACSA)Level 1, 36 Albert Road, Sth Melbourne, Victoria 3025

Phone: (03) 9686 3460

Fax: (03) 9686 3453


Website: www.agedcare.org.au


While this guide is written for staff working in generic aged care residential services, it has

material which is very useful to staff working in supported accommodation for people with dis-

abilities who are ageing.


The guide is very well written with clear information. The case studies and questions direct the

staff member to examine their own belief systems and to put themselves in the residents' shoes.

Cost

Available at no cost.


The guide is not specifically written for people with disabilities, it is written for the aged care

sector.

Philosophical base

The guide aims to help staff (in residential aged care) to understand residents and treat them as

individuals who have a lifetime of experience and history behind them. By recognising each

resident as an individual and understanding their backgrounds, staff can improve the standard

of care they provide, the quality of their work and their job satisfaction.


Aged Care Services


101


The guide is designed as a training resource. It provides self-paced learning through: sections:

l to read;

l case studies to discuss (with other staff or with supervisor) based on a list of trigger ques-

tions. Staff are then asked to 'Put yourself In Their Shoes'; by reflecting on how you would

like to be treated in a similar situation.

l For You to Find Out - sections for staff to complete so that they get to know the policies

and procedures of their own facility.

Outcomes

The guide was well received within the Aged Care sector and the authors are producing a new

handbook for those who are employed to care for people in their homes13

13: Flanagan, P & Stoyles, M.(2002). In Their Homes- . A handbook for home care workers. Melbourne, Victoria: Aged &Community Services Australia

Aged Care Services

Helping Hands Aged Care Inc.


102

Community services for ageing people with a strong rehabilitation and community integration focus.

Area Served: South Australia, Australia

Contact: Project Manager Community Services Development, Helping Hand Aged Care Inc.PO Box 66, North Adelaide, South Australia 5006

Phone: (08) 8366 0804

Fax: (08) 8366 0801



The core services provided by Helping Hands Aged Care (HHAC) are:

l Residential care to older people;

l Planning, information and/or support services to older people living in their own homes;

l Rehabilitation and therapy services;

l Support to carers;

l Accommodation;

l Consultancy or developmental services to other agencies and groups.

HHAC claims to have developed the first residential facility in Australia built on ageing in place

principles. The organisation's community services have a strong rehabilitative and community

integration focus, aimed at ensuring clients reach and/or maintain their capacity to live in their

own homes. The organisation aims to create greater links between residential and community

services, so that people are able to move between services more freely as their needs change.

Examples of current work include:

l Packages of rehabilitative care for older people (funded though both CACPS and HACC)

which enable people to achieve optimal functioning and reduce their dependence on long

term care (either residential or community based). These packages are provided through the

Community Transition Program.

l Linkages between hospitals, residential facilities and community services, ensuring older peo-

ple a smoother transition into and out of acute services and, as a result, reduced dependence

on long term or more intensive levels of care. Specific projects include involvement in the

Acute Transitional Alliance and the Community Re-Entry Project.


HHAC is striving to develop better systems which make ageing in place a reality for all people.

Aged Care Services


103

Implementation takes place at three levels:

l At the individual level, HHAC responds sensitively to individual needs and has been able to

support people with disabilities in a limited number of cases;

l At the service/project level, HHAC is seeking funding for collaborative projects with other

sectors (disability, acute) which aim to break down silos14 and create seamless services.

Applications relevant to these sectors are currently with government or under development;

l At the system level, HHAC works within other services, others sectors and funders to advo-

cate for system change, where the system creates barriers to ageing in place. This activity

involves participation in forums to discuss the issues and participation in trials or new serv-

ices.

Cost

Additional funding is being pursued to implement new directions.


Links are critical to the success of these initiatives and are occurring most often through the

development of formal applications for funding. In addition, actions which the organisation is

pursuing to increase its capacity to pursue system change leading to better links between disabil-

ity and ageing are:

l Document what they see;

l Participate in research which gives an evidence base on such issues as longevity and what

constitutes "accelerated conditions";

l Gain a better understanding of the funding available to both sectors and the mechanisms by

which that funding is distributed;

l Promote a new way of talking about ageing and disability.

HHAC is developing a position statement around disability and ageing. It is still in draft form

but the key elements are:

l People with disabilities grow older;

l People who are older can have disabilities;

l For people with disabilities, there is greater potential to experience acceleration of condi-

tions which match the experience of ageing and result in changing needs;

l Carers age;

l Carers can have disabilities.

14: Silos: Service delivery model in which multiple services are provided in isolation to an individual with minimal orlittle consultation between services.

Aged Care Services


104

The organisation's end goal in pursuing these issues is to blend the sectors together, so that

people can access support based on their need rather than on artificial system categories such as

"aged care" or "disability care". The organisation believes that people need to be constantly

mindful of the pitfalls of grouping people together according to a list of conditions, a set of

diagnoses or arbitrary categories such as age.

According to HHAC, the disability and aged care sectors need to better understand the resourc-

ing implications of the intersect between them, for example:

l The net cost of services to an individual may not necessarily be the cost of disability services plus

the cost of ageing services. There may be savings through combining efforts;

l Not all people with disabilities will require high levels of aged care support;

l There are costs associated with some disabilities, regardless of age (for example, equipment,

specialised support needs).

Philosophical base

The overall philosophy of Helping Hand Aged Care Inc is described in the Mission statement

to provide an innovative and broad range of residential and community based services to older

people which enable them to have the best feasible quality of life.

Outcomes

l Choice for older people;

l Operations and service delivery which reflect best practice in the industry;

l Develop opportunities to provide new services in new ways to older people;

l Services designed directly in response to the needs of older people.

Aged Care Services

Health And Aged Care - Aged Care Assessment Teams (ACAT)


105

Teams of professionals who are to provide information to help people make informed choices about agedcare services.


Contact: Local Aged Care Assessment Team Or Aged Care NationalInformation Line

Phone: 1800 500 853 (Freecall)

Website: http://www.health.gov.au (information taken from the website)


Assessment Teams can help people obtain a range of Commonwealth government funded serv-

ices to help them to continue living in their own home.

Some of the services supported by the Commonwealth Government include:

l Home and Community Care (HACC) including:

l Home nursing;

l Help with house work;

l Delivered meals;

l Transport to shops or appointments.

l Respite Care including:

l Care in a day-centre;

l Support in your home for a few hours a week;

l A short stay in an aged care home.

l Community Aged Care Packages:

l Designed to provide a range of services to meet more complex care needs in the

home.

l Residential Care Facilities including:

l A nursing home with ongoing nursing care;

l Hostel where you can live independently but get help with meals and laundry and per-

sonal care such as dressing, medication and showering.


An assessment is a consultation with one or more members of your local Aged Care

Assessment Team. The Teams are usually based at a hospital, geriatric centre or community

centre and can see people in their own home or in hospital. Local Assessment Teams might

include a doctor, nurse, social worker, occupational therapist or physiotherapist.

Aged Care Services


106

The aim of the assessment is to help the aged person to choose the services that most suit their

identified needs.

The Assessment team member/s will discuss the person's health, social and personal needs and,

with the person's approval their doctor may let the team know their medical history. The Team

will explain the assessment results with the person/person responsible and will discuss the avail-

able community service options.

Cost

No charge - ACATs are a government funded service.


If the person being assessed has a disability and is ageing, the Team should consult with profes-

sionals in the disability sector who know the person being assessed.

Philosophical base

Recent illness, disability, bereavement or simply the passing of the years may mean that a person

is now finding it harder to manage at home without help. The Assessment Teams aim to help

people make appropriate choices about the future.


Assessment Teams are comprised of professionals with specific training eg doctors, nurses,

social workers, occupational therapists or physiotherapists.

Outcomes

To meet the needs of the person by providing them with a range of options to maintain them

in their own home or refer them to an aged care placement.

Aged Care Services

Health And Aged Care - Community Care Packages


107

Individually designed packages of community care services to help people with complex care needs toremain living in their own home.


Contact: Local Aged Care Assessment Team Or Aged Care NationalInformation Line

Phone: 1800 500 853 (Freecall)

Website: http://www.health.gov.au (information taken from the website)


Community Care Packages are planned and coordinated packages of community care services

to help people with complex care needs remain living in their own home. They are designed

for each individual and are based on their particular needs.

The types of services available as part of a Community Care Package include help with:

l Bathing;

l Dressing;

l Meals;

l Transport;

l Laundry;

l Gardening;

l Social activities.

The services are flexible and can change as the person's needs change.


To be eligible to receive a Care Package, a person's needs must be assessed by an approved

assessment authority. In most cases this will be an Aged Care Assessment Team (see prior

entry), to determine whether a Care Package is suitable for the person.

If the person is assessed as eligible, and a Care Package is available, the assessment team will

arrange the package with a service provider. The provider will then:

l Provide the person/person responsible with enough information for them to make

informed choices about the services they receive;

l Offer the person/person responsible a written agreement which clearly sets out the person's

rights and responsibilities and those of the provider;

Aged Care Services


108

l Provide the person/person responsible with a written care plan of the services they will

receive.

The service provider will also regularly review the person's situation to ensure that the services

being received are appropriate. They may refer the person to other service providers if they

can no longer meet the person's needs.

Cost

There is no charge for the ACAT assessment as this is a government funded service.

There may be fees charged by the service provider for the service provided and this will be

negotiated at the time of accepting the service. A person can not be denied a service they

require because they cannot afford to pay. For older people on the maximum basic rate of pen-

sion, fees must not exceed 17.5% of that pension.


If the person being assessed has a disability and is ageing, the Assessment Team should consult

with professionals in the disability sector who know the person being assessed.

Philosophical base

The Community Care Packages are designed to maintain people with complex care needs in

their own home within their own community.


Service providers should be providing staff with staff training.

Outcomes

The maintenance of people with complex care needs within the community.

Section F contains three (3) examples of assessment tools which have been developed to assess thechanging support needs of people with disabilities as they are ageing.

F.AssessmentAssessment

ToolsTools

F. Assessment Tools

Assessment Tools

Hornsby Lifestyles, The Lorna Hodgkinson Sunshine Home -Individual Plan of Assessment of Support Needs and Current Skills


110

The assessment is designed to measure the changing needs of people with a disability. A benchmarkassessment of skills and abilities is compared with subsequent assessments allowing identification ofchanges in skill levels.

Area Served: Northern Sydney, Australia

Contact: Executive Secretary The Lorna Hodgkinson Sunshine Home212 Pacific Highway, Gore Hill; New South Wales

Phone: (02) 9439 2011

Fax: (02) 94774634


The assessment is designed to measure the changing needs of people with a disability by estab-

lishing a benchmark of skills and abilities against which subsequent assessments can be meas-

ured.

The assessment assists staff to identify changes in skill levels at an early stage because there is a

concrete, accessible reference point.


The assessment records current impairment/health issues as well as specialist/health assess-

ments.

The degree of support required in each area is scaled from 0 = is independent to 4+ = Total

Dependent. The scale also allows for 5 = No available opportunity to achieve this task.

The areas rated are:

Part 1 Activities of Daily Living

Part 2 Social Interaction

Part 3 Physical Competencies

Cost

The tool is not for sale however, a copy may be obtained from the service for the cost of pho-

tocopying.

Assessment Tools


111


The Lorna Hodgkinson Sunshine Home has modified an assessment process first developed by

Minda Incorporated in South Australia (see prior entry). The Home wishes to acknowledge

Minda Inc.'s support in the development of this tool.

Philosophical base

With the early identification of a change in skills, staff can begin to project possible support

needs and begin a plan of action to enable the person with a disability to remain in their own

home as they age and their support needs increase.


Staff require training in administration of the assessment tool.

Outcomes

The organisation is able to track the changing needs of clients and respond appropriately.

Assessment Tools

Ability Options - Lifestyle Options: Assessment of ChangingNeeds


112

A tool designed to monitor the changing needs of people with intellectual disabilities in order to provideappropriate services/interventions.

Area Served: Greater West of Sydney

Contact: Manager, Lifestyle OptionsAbility Options, 72 Railway Parade, Granville NSW 2142

Phone: (02) 9637 1944

Fax: (02) 9637 1537



In order to monitor the changing needs of people, Ability Options Ltd. have developed and/or

utilise a series of assessments that track the functional skills of service users.

The assessment process is carried out as part of the Personal Futures Planning process and are

completed with all service users regardless of their age. However, accurate mapping of changes

is very important as people age, for changes can occur more rapidly or be more marked than

for younger people. In providing a baseline of skills, changes in a person's skill level, whether

small and/or progressive, can be noted and responded to in a timely manner.


The assessments used depend on the individual service user and are summarised below:

1. Core Skills assessment is a tool developed by Ability Options Ltd. and used on a yearly basis

to track the development/maintenance of skills of service users. The assessment is compre-

hensive and takes 4-6 hours to complete spread over a period of 1 to 2 weeks. The assess-

ment is conducted by the Educator in the person's own home as they go about their daily

tasks. The assessment concentrates on the areas of:

l Personal hygiene and grooming;

l Money and number use;

l Human relationships;

l Personal responsibility;

l Household operations;

l Cooking, washing and ironing;

l Use of leisure time;

l Community access skills;

Assessment Tools


113

(continued)

l Road safety;

l Shopping communication;

l First aid training;

l Medical care;

l Time skills;

l Home alone assessment.

2. Inventory of Client and Agency Planning (ICAP) assessment carried out by the organisa-

tion's psychologist every 2 years. This assessment tool maps adaptive behaviour and chal-

lenging behaviour;

3. FIM for service users who are frail/aged. This instrument looks at the hours of support

required in different domains. This assessment can be used at different intervals to monitor

any decline and the subsequent level of support the service user may require.

The assessments aim at the functional skills of the individual so that a picture is built up of the

person's competencies and areas requiring additional assistance. The assessments are completed

with the assistance of service users, staff and psychologists.

Cost

The assessments are carried out within the present allocation of funding except in the case of

interim funding received while waiting for Service Access System (SAS) funding for a particular

individual.

The ICAP15 and FIM assessment tools are purchased.


Identifies changing needs and recommends suitable services and activities, some of which may

be in an age related area.

Philosophical base


ence, citizenship and community participation of the person with a disability for whom the

organisation accepts a support responsibility. This is done in accordance with and in line with

the Disability Services Act (1993) and the Disability Service Standards applicable to the state of

New South Wales.

15: ICAP: Bruininks,R.H.,Hill, B.K., Weatherman, R.F. & Woodcock, R.W. (1986). Inventory for Client and AgencyPlanning. Chicago

Assessment Tools


114


Assessments will identify training programs for service users that will be implemented by staff.

Some training for staff members may therefore be required to meet the specific needs identified

for an individual.

Outcomes

l Regular use of the assessments provide a baseline picture of service users' skills which can

be monitored on a regular bases;

l The support will be tailored to the individual need as identified by the assessment/s.

Assessment Tools

Boswell Retardation Center - Pre-Retirement Assessment andPlanning for Older Persons with Mental Retardation - 1991.


115

An instrument to assess the person with a disability's knowledge and preferences regarding issues relat-ed to retirement and to facilitate their planning for retirement.

Area Served: USA

Author: Laughlin, C., Cotton, P., Gardner, M., Britt, C.R. (Eds.),(1991). Pre-Retirement Assessment and planning for Older Persons With Mental Retardation .Sanatorium, Mississippi: Boswell Retardation Center

Contact: Boswell Retardation CenterPO Box 128Sanatorium, Mississippi, USA 39112

Phone: 849-3321

Fax: 849 2586


The purpose of the instrument is to assess the person's knowledge and preferences regarding

issues related to retirement and then to facilitate the process of planning for this preferred

retirement. The assessment process should be conducted prior to the initiation of training.

The manual states that the instrument is suitable for use with people who meet certain criteria.

They should possess/be:

l Moderate to mild deficits of adaptive functioning (as assessed by a measure of adaptive

behaviour, such as the Vineland Adapted Behaviour Scale or the Adult Functional Adaptive

Behaviour Scale;

l Fifty-five (55) years of age or older;

l Adequate visual acuity to discern the composition of pictures;

l Sufficient hearing to comprehend normal speech or sufficiently skillful to communicate

effectively using a recognised signing system.


1. The Pre-Retirement Knowledge and Preferences Assessment is administered prior to train-

ing. This consists of information about the individual which has been divided into seven

'chapters':

Chapter 1: Attitude and role adjustment - Twelve (12) questions on views on retirement;

Chapter 2: The Big Picture - Fifteen (15) questions on options, choices etc.

Chapter 3: Dynamic Fitness - Twenty-eight (28) questions on health & exercise;

Chapter 4: Living Arrangements - Sixteen (16) questions on domestic skills;

Chapter 5: Leisure and Recreation - Nineteen (19) questions on hobby, activities, relationships;

Assessment Tools


116

Chapter 6: Work Environments - Thirty-four (34) questions on work, retirement & vol-

unteering;

Chapter 7: Support Services - Thirty- two (32) questions on medical, transport, safety,

money etc.

The manual provides comprehensive scoring criteria to mark and assess the answers provid-

ed to the questionnaire.

2. Pre-Retirement Training Comprehensive Evaluation of Preferences follows the question-

naire. This is divided into two parts:

Part A: Personality Preferences - Fifty-two (52)Yes/Maybe/No questions relating to

friendships, living preferences, work/leisure preferences, health/exercise etc.

Part B: Activity Preferences - Ninety-two (92) Yes/Maybe/No questions about specif-

ic activities eg from 'dining out in a restaurant' to 'photography' to 'resting in your room'. A

pictorial guide accompanies this section to assist the person if they are not aware of the

activity.

Curriculum Guide: - materials have been developed which relate to the seven areas covered in

The Pre-Retirement Knowledge and Preferences Assessment plus an eight area Retirement

Countdown. The materials are organised with a Plan of Instruction including: Goal;

Objectives; Knowledge Acquired; Teaching Methods/Activities; Materials/Resources.

The guide includes A Bill of Rights for the Elderly Person with Mental Retardation, a list of

resources and a Graduation Certificate to be issued to participating people.

Cost



The tools (assessment and training) combine knowledge of people with disabilities and issues

related to retirement within the general population.

Philosophical base

"To ensure a higher quality of life, the person with a disability had to retire to something not just quit " (p. 1).

The options that are proposed for an individual needs to be realistic for the person. The

options are based upon the level of adaptive functioning, physical condition, availability of

options from which the person could choose, and the financial resources needed. The person

with a disability needs to be introduced to a wide variety of experiences for many people with

disabilities have had limited opportunities and experiences within the wider community.

Assessment Tools


117


The Curriculum section of the tool is designed to teach people with disabilities about their

retirement options. There is a section on resources.

Outcomes

Enables people to gain a deeper understanding of what retirement may mean for them and to

make some choices about what to do in their retirement.

Section G contains three (3) examples of staff training resources which have been utilised by servicesproviding support to people with disabilities who are ageing.

G.Staff Staff

TrainingTraining

G. Staff Training

Staff TrainingActivities Handbook & Instructor's Guide for Expanding Options forOlder Adults with Developmental Disabilities and accompanyingvolume Expanding Options for Older Adults with DevelopmentalDisabilities: A Practical Guide to Achieving Community Access16


119

Information and training about older persons with developmental disabilities.

Area Served: United States

Authors: Stroud, M & Sutton, E. (1988). Activities Handbook & Instructor's Guide forExpanding Options for Older Adults with Developmental Disabilities . Maryland,USA: Paul H. Brookes Publishing Co.

Contact: Post Office Box 10624Baltimore, Maryland, USA 21285-0624

Australian distributor: MACLENNAN & PETTY PTY LTD

Phone: (02) 9349 5811


Website: www.maclennanpetty.com.au


The Activities Handbook is for use by staff of agencies that support older adults with develop-

mentally disability, who attend either special services or generic community services.

The Handbook is divided into two parts:

Part One: Activities Handbook (detailed in Section A: Community Leisure/Retirement)

Part Two: Instructor's Guide (detailed in this section) which is accompanied by the Expanding

Options for Older Adults with Developmental Disabilities: A Practical Guide to Achieving Community Access

by the same authors 1988, Paul H. Brookes Publishing Company.

The Instructor's Guide is used by staff development trainers associated with organisation who

support adult with disability. The materials were also developed for use by and with families

and advocates of older adults with developmental disabilities.


Each lesson plan in the Instructor's Guide is designed to be presented in approximately one

hour. This allows for lecture and discussion, as well as for participation in an activity to rein-

force the learning. The plans can be adapted to meet the special needs of each group (to put

more emphasis on the disability aspects or the ageing aspects depending on the

background/training of the participants).


Staff Training


120

The Guide is divided into five sections:

Section I: Normal Aging;

Section II: Nature and Needs of Elderly Persons with Mental Retardation /Developmental Disabilities;

Section III: Planning for Community Access;

Section IV: Discipline with Dignity: How to Work with Dependent Adults;

Section V: Meeting the Unique Needs of Individuals: The Interdisciplinary Process.

Each section includes a list of competencies and objectives to be attained by participants.

Detailed lesson plans are presented for each session including activities, lecture outlines and

handouts. The lesson plans for each of the five sections are comprehensive and geared to a

total of 6 to 8 hours of training for each section.

A basic understanding of the principles of adult education is desirable. The instructor should

understand the importance of a variety of teaching methods such as lectures, discussion, group

process, simulation, role play, visual aids and so on.

Cost



The book is written for service providers within the disability and generic service sectors and

draws upon information related to ageing in the general population.

Philosophical base

Affirmation of the rights of all human beings to individual consideration, choice and opportu-

nity for personal growth.


The Activities Handbook and Instructor's Guide is a training manual. It is intended to be used with

the primary text, Expanding Options for Older Adults with Developmental Disabilities.

Each lesson in the Instructor's Guide consists of a lesson plan with objectives, instructor's

activities, learner activities, materials and evaluation. Lecture outlines are provided as needed,

and the activities are presented for duplication as handouts.

Outcomes

The aim (of the training) is to "ensure that older adults with disabilities are able to anticipate retirement;

then they may enjoy new activities in the company of the citizens of the community; doing new things; going

places; making friends, and making the most of that time of life" (page 3).

Staff Training

Understanding Aging and Developmental Disabilities: An In-Service Curriculum, 1997


121

A training programme in Ageing and Developmental Disabilities.

Area Served: United States

Authors: Richard H. Machemer, Jr., PhD (Editor)Strong Center for Developmental DisabilitiesUniversity of Rochester School of Medicine and Dentistry, Post Office Box 671, Rochester, New York 1462

Telephone: 716-275-0355

Fax: 716-275-3366


The aim of the manual is to provide an "off the shelf" training manual to assist trainers to pro-

vide knowledge and practical skills to providers of care to older people with a developmental

disability. The topics in the manual were chosen, through extensive reviews and discussions, as

the most pressing needs for the immediate future.


"The manual aims to provide all the materials, focus and resources that are needed to allow a person to take this

"off the shelf", read it carefully, take the information on any one of the topics and present a coherent and

appropriate training session using the material" (Machemer, 1997).

The manual includes:

l Objectives for both the trainers and the participants in the training;

l A content outline;

l Suggested time needed;

l Lists of resources;

l Further references;

l An explanation of all the material presented in the module;

l A series of masters to be used to produce overhead transparencies of handouts that high-

light parts of the presentation.

Staff Training


122

The Guide is divided into six sections:

Section I: Biology of Human Aging

Section II: Developmental Disabilities;

Section III: Aging and Developmental Disabilities Service Systems;

Section IV: Family Caregiving;

Section V: Alzheimer's Disease and Down Syndrome - the connection;

Section VI: Environment and Aging

Cost

The manual is available for purchase from the Rochester Medical Center.


The manual aims to provide care-providers, agency and programme directors, and public policy

makers with good quality information about ageing and people with developmental disabilities.

As such it could be used with workers in either the disability or aged care sectors.

Philosophical base

To fill a gap in the burgeoning area of 'ageing' for people with disabilities in order to provide

information and resources which are accurate and reflect key issues.


The manual is a training kit designed to be used as training modules with accompanying

resource material.

Outcomes

Providing training and education on ageing in the field of developmental disability.

Staff Training

The Lorna Hodgkinson Sunshine Home - Workplace AssessmentPackage


123

To identify and acknowledge staff competencies. Organised according to six selected aged care and dis-ability national competency standards.

Area Served: Northern Sydney Area, Australia

Contact: The New South Wales Community Services and Health IndustryTraining Board, PO Box 562, Gladesville, N.S.W. 2111

Phone: (02) 9816 2869


The assessment package is used to identify those staff who are skilled to work with people with

a disability who are also ageing. The organisation can then identify gaps in staff skills and pro-

vide appropriate training to staff.


This resource has been used by coordinators training to become Workplace Assessors at the

Lorna Hodgkinson Sunshine Home. As workplace assessors, they have skills and knowledge to

train and assess their colleagues in the organisation. Other staff may also be involved by having

their workplace skills and knowledge assessed.

A manual exists which includes tools developed to measure staff competencies, as well as forms

required to conduct the assessment.

Cost

Contact NSW Community Services and Health Industry Training Board on details above.


The Workplace Assessment Package was developed in partnership with the NSW Department

of Education and Training, the Health and Research Employees Association of NSW and

Petersham Technical and Further Education (TAFE).

Philosophical base

Identifying, acknowledging and developing staff competencies increases the quality of support

provided to consumers.


This Workplace Assessment Package has been developed by the organisation, which identifies

and acknowledges staff competencies. The Assessment package is organised according to six

Staff Training


124

selected aged care and disability national competency standards from the Community Services

Training Package developed by Community Services and Health Training, Australia. These are:

l Orientation to disability work;

l Maintaining an environment designed to empower people with disabilities;

l Providing services to people with disabilities;

l Providing services to aged people;

l Orientation to aged care work;

l Contribution to service delivery strategies.

Outcomes

Staff are equipped with the skills they require to provide the best service possible to meet the

changing needs of the clients.

A flow chart explains the seven-step process carried out by assessors.

Section H contains two (2) examples of organisations that have successfully negotiated cross-agencycooperation between disability and aged care services within a local area.

H.Cross-AgencyCross-Agency

CooperationCooperation

H. Cross-Agency Cooperation

Cross-Agency Cooperation

Pathways Committee, Armidale - Cross Agency Protocols


126

Cross-agency development of an understanding about the issue of people with a disability that are ageing.

Area Served: Armidale, New South Wales-Local Rural Community

Contact: Armidale Pathways GroupC/- Armidale Community Care CoordinatorKent House, Armidale, NSW

Phone: (02) 6771 2504


Cross-agency development of an understanding about the issue of people with a disability who

are ageing, and about pathways, protocols, policies and operational strategies to ensure the

effective and seamless support of these people, in a rural community.


The group has been meeting, as needed, for approximately 8 years. The group develops policy

and practices within the disability/aged care agencies and complements the individual case work

by organisations in either the ageing or disability fields.

The group has been/is involved in the following:

l Identifying the needs of people with an intellectual disability who were ageing in the

Armidale area;

l Examining available literature on ageing people with disabilities;

l Discussing the difficulties which agencies were predicting/experiencing in responding to the

emerging needs of this group in the community;

l Analysing appropriate responses within the existing service infrastructure;

l Identifying areas where cross agency collaboration and support would be necessary (eg staff

skills and training);

l Updating and reviewing previous pathways documentation, based on newer service respons-

es;

l Preparing a Principles document to guide the organisations in their support of people with a

disability who are ageing;

l Presenting a joint submission to the Upper House Inquiry into the needs of people with a

disability;



127

l Preparing two submissions to the Commonwealth and State governments for the funding of

services for people with a disability who are ageing. A significant focus of these submis-

sions was the need for funding of a specialist worker who would work with people with a

disability who are ageing and their families to:

l Assist them to develop both short term and longer term life plans;

l Assist them to access appropriate community living support and living skills training;

l Monitor and overcome emerging difficulties, particularly with cross agency support

plans and

l Assist the individual and their families when significant life events occur (eg the death

of a parent or retirement etc.)

l Working collaboratively to break down actual and perceived barriers to the use of the respite

support of the Home Care Service of NSW by families with members with a disability and

to support families to take up this support.

l Discussing whether a new capital development largely for people with a disability who are

ageing is required.

Rural environments in and around Armidale, NSW. Size of the local area and the limited num-

ber of organisations providing services to people with disabilities and people who are ageing

makes this more workable than in a large and diverse metropolitan area.

Cost

Costs are the time of the people involved on the committee hence an agreement between the

agencies of the necessity of the committee is required at a managerial level.


Participating agencies include residential aged care homes, community care services, disability

services (both government and non-government), the Aged Care Assessment Team and the

University of New England.

The target group are people aged forty and over, with primarily an intellectual disability who live

in the Armidale area.

Philosophical base

The group allows the members to debate philosophical or policy differences between the aged

and disability areas and to reach some level of common understanding and agreement about

shared values, principles and directions. Major debates have covered the use of, or need for,

specialist versus mainstream service options, and whether nursing home admission is ever

acceptable for people with a disability.



128

The overall principles which the group have agreed upon are:

a. Disability and community care standards must guide the design of support options for any

person with a disability who is ageing;

b. People with a disability who are ageing, like other people who are ageing, should be support-

ed to live in their own homes for as long as they can;

c. Retirement planning and support for people with a disability who are ageing needs to be

considered in three broad lifestyle stages: pre-retirement planning; active 'Senior Citizens'

phase and frail age stage;

d. People with a disability may require both the support of a disability programme as well as

support of an ageing programme. Some people whose behavioural or support needs are

complex may also require additional specialist support;

e. People with an intellectual disability who are ageing, like other members of the community,

should be supported wherever possible in mainstream services;

f. Providers of services for aged people and of services for people with a disability will assist

each other to improve the quality of their care and support to people with an intellectual

disability who are ageing;

g. If a person with an intellectual disability who is ageing enters an aged residential service, it is

expected that disability workers may retain some involvement with the client to assist the

transition and maintain, at least in the short term, some of the social education and advoca-

cy support to the client which may not be provided by the aged facility;

h. Where people with an intellectual disability have extensive specialist support requirements,

this support may only be possible or available through specialist, rather than mainstream

services;

i. If a person with a disability who is ageing is believed to be requiring additional or different

support, any service currently supporting the client many review its own ability to provide

the required support. A service will only refer a person to another agency if, following

review, the service finds it is unable to provide the required support;

j. All people with a disability who are ageing, and their families/carers should be offered

advice, or referral to advice, about future life planning eg wills and estates;

support/guardianship options;

k. Individual support plans must be understood and agreed to by the client and their

family/carer; optimise and coordinate the support received from all involved agencies; con-

sider future plans and support viability for the person who is ageing.



129


This has not been fully developed, although the group has cross agency agreement to joint

training. Some of the participating agencies have developed individual responses to training

needs associated with people who are ageing with a disability.

Outcomes

Effective cross agency planning within the Armidale area with the following outcomes for indi-

viduals:

l Issues for individuals have been discussed;

l Positive support for people with disabilities who are ageing has been promoted;

l Service delivery difficulties have been effectively 'problem solved' by the group;

l Analysis of trends within this population has influenced the appropriate design of services

for the group.


Ability Options - Lifestyle Options Support to Person in AgedCare Setting


130

Providing on-going support to a person unable to remain living at home through negotiation with theaged care setting.

Area Served: Greater West of Sydney

Contact: Manager Lifestyle OptionsAbility Options Ltd. 72 Railway Parade, Granville NSW 2142

Phone: (02) 9637 1944

Fax: (02) 9637 1537



This nomination is not about a person who is ageing in place in their home. However, the

service, which formally provided accommodation to this person, has sustained their involve-

ment with this person in order to maintain their social links. This nomination has been includ-

ed as an example of the type of support a service may offer to a person whose level of care

necessitates aged care placement. It relies upon negotiation with the aged care setting.

This person was unable to remain in his home because of the lack of funding to provide

overnight support. His need for additional support in the areas of health, hygiene, meal prepa-

ration and mobility meant that that he was dependent on full staff support. Lifestyle Options

was unable to provide 24-hour care with the staffing levels required to provide adequate sup-

port for this person.

Although the person was not able to physically remain in his home, his involvement in all other

activities remained unchanged.


The model of support has two key features.

l Using generic services to provide the high level of care the person requires;

l The person is able to continue his life and daily routine with support from Ability Options.

The aged care accommodation is provided close to his previous accommodation so the resident

can maintain his friendships and community activities.



131

The resident is supported by Ability Options to:

l Attend church with his former housemates each Sunday;

l Regularly visit friends and family on a weekend;

l Access all Ability Option's social functions;

l Maintain links with a driver from Ability Options who brings him to activities 4 days per

week;

l Access 1-1 networking support once per week to attend to his personal business.

Cost

Staff support costs have been meet within the existing funding base.


The use of a generic aged care service to provide the level of personal care and support the

person requires while still providing access and support to other community activities, services

and programmes as determined by the service user.

Philosophical base

Lifestyle Options is committed to enhancing quality of life generally, in particular the independ-





The service provides the usual staff training for Educators working in community settings with

additional training in areas specific to the support required.

Outcomes

The service user has been able to continue his normal routine and contacts with his peers,

whilst also receiving an appropriate level of personal care.

Section I contains two examples of how to adapt housing to meet the needs of people with life long dis-abilities who are ageing.

I.Adaptability Adaptability ofof HousingHousing

I. Adaptability of Housing

Adaptability of Housing

Modifying Home Environments - 2000


133

A book chapter which looks at home modifications for older people with developmental disabilities.


Author: Hutchings, B.L, Olsen, R.V. & Ehrenkrantz, E.D. (2000). ModifyingHome Environment s. In M P. Janicki & E. F. Ansello (Eds.). CommunitySupports for Aging Adults with Lifelong Disabilities (pp.243-256). Baltimore,USA: Paul. H. Brookes Publishing Co.

Contact details: Center for Architecture and Building Science Research, New JerseyInstitute of Technology, 323 Dr. Martin Luther King Boulevard, Campbell Hall Room 335,University Heights, Newark, New Jersey USA 07102.


The need for a physically supportive home is particularly pronounced for older people with

developmental disabilities, who face the prospect of developing age-related disabilities overlaid

onto existing limitations.

Environments for older people with and without pre-existing disabilities should be designed

with maximum flexibility to adapt to these changing needs.

The supportive environment provided by flexible home design will result in a higher quality of

life for people with developmental disabilities.

Although some home designs are inherently more flexible than others, there are many ways in

which existing housing can be modified to meet the needs of people with the ever-increasing

limitations that occur with advancing age.


The text considers general layout and furnishings of homes for older people with developmen-

tal disabilities under the following headings:

l Multiple-level homes - single-storey homes are preferred however the text outlines options

for making a multiple-level house accessible;

l Kitchens;

l Appliances;

l Bathrooms;

l Grab bars;

l Sinks;

l Toilets;



134

(continued)

l Bathtubs and showers;

l Lighting and heating

l Outdoor access.

Cost

Specific costings are not discussed, and would be of limited benefit to the Australian context

however, relative cost effectiveness of options is mentioned.


The chapter examines the home environments of older people with developmental disabilities.

Philosophical base

Reducing the isolation of people with disabilities who are aged and preventing premature or

unnecessary institutionalisation.


Resources required to modify a home environment are discussed.

Outcomes

Providing a home that is safe, supportive and homelike with opportunities for growth and stim-

ulation that can enhance an individual's feelings of competency, independence and sense of

self-worth.


Hornsby Challenge - Adaptable Housing


135

Housing designed to meet the dementia and frail aged care needs of consumers.

Area Served: Hornsby Area, New South Wales, Australia

Contact: Manager, Hornsby Challenge2 Rowe StreetEastwood, NSW 2112

Phone: (02) 9874 8544

Fax: (02) 9874 8870



The organisation found that a number of people who they supported who had Down

Syndrome were developing Alzheimer's Disease. As the disease advanced, the organisation

found that, despite extra supports, some people needed nursing home placement because their

housing was inappropriate e.g. housing not large enough to accommodate extra staff overnight;

bathrooms confusing and inaccessible; too many steps; no room for hoists and other equip-

ment; slippery floors etc. These problems were sometimes encountered by other elderly people

supported by the organisation who were becoming frail.

The organisation entered into a joint agreement with the Department of Housing to build a

house for three people requiring extra support due to their frail aged-care needs. A flat was

built at the side of the house to accommodate a flat-mate (not a paid staff member but some-

one who responded to a share accommodation advertisement) whose role was to be available at

night to assist the residents if necessary.


The house was built with all the features that would enable elderly, frail, confused people to

cope as well as possible:

l Bedrooms are large and all have ensuites;

l There is also a large bathroom with a bath and room for a hoist;

l There is an additional lounge room so people can be alone in a quiet space;

l There are no steps;

l The garden is accessible from the house;

l The floors are non-slip



136

Cost

The cost of building the house was shared with the Department of Housing. The process of

negotiating this with the Department required considerable time and effort. The organisation

used the proceeds from the sale of an old institution owned by the service to assist in the pur-

chase of land/building.


The organisation reports some problems in negotiating with the Department of Housing how-

ever, it believes that the investment of its funds into real estate is valuable.

Philosophical base

The purpose built house has been very successful for the three people who live there. Having a

flat mate next door has worked very well as she has a good relationship with the women and is

still able to be private and have her own life.

The house is very comfortable and the design has eliminated some issues such as toileting prob-

lems and wandering that had been an issue for some of the women in their previous accommo-

dation. Two of the women were facing the prospect of moving to a nursing home, however

the facilities and design of the house, plus the provision of extra aged care supports, have

meant that they can comfortably be accommodated in this house for the long term.


Staff need to be supported in their relationship with the flat mate so as not to inhibit her rela-

tionship with the residents and not to treat her as an extra staff member.

Training in supporting elderly people and people with dementia was provided by a local aged

care service.

Outcomes

This accommodation is a long term option for the women living there ensuring stability, securi-

ty and familiarity which are very important for maintaining the competence of elderly people

with dementia.

AnnotatedAnnotatedBibliographyBibliography

Annotated bibliography

J.

Keywords Details Innovative Practice/Key Issues Training Implications

138


Ageing - Annotated Bibliography

Part 1 - Journal Articles

Alternative & augmentative communication

Balandin, S., & Morgan.J.(2001). Preparing for theFuture: Aging andAlternative andAugmentativeCommunication.Augmentative and AlternativeCommunication Vol. 17, No.2, pp 99-108

l This article looks at issues related tohow ageing affects the lives of peoplewho use alternative and augmentativecommunication (AAC).

l Seventy-eight adults with cerebral palsywho use AAC and are aged over 30years were asked about their health,modes of communication and access toinformation.

l The results (as described in the article)indicate that those involved in the AACfield must work with people who useAAC to ensure that they maintain theirhealth, well-being, and effective commu-nication as they age.

Access

Day activity andleisure services

Bigby, C. (1992). Access andlinkage: Two critical issuesfor older people with anintellectual disability in util-ising day activity and leisureservices. Journal ofIntellectual & DevelopmentalDisability Vol. 18, No. 2, pp95-110

l A "linking mechanism" is requiredbetween older people with an intellectu-al disability and community based serv-ices. The objective of such a pro-gramme would be to increase access andparticipation in local community activi-ties which are age appropriate, developskills and a sense of achievement forolder people with an intellectual disabili-ty on an individual basis.

l Major obstacles to community participa-tion occurring by older people withintellectual disabilities are, poor informal



139


support networks, lack of communityskills and inability to access communitybased activities without assistance.

Hidden population Bigby, C. (1995). Is there ahidden group of older peo-ple with intellectual disabili-ty and from whom are theyhidden? Lessons from arecent case-finding study.Journal of Intellectual &Developmental Disability Vol.20, No. 1, pp 15-24

l Highlights the need for greater collabo-ration between the disability and agedcare service systems in research, pro-gramme development and staff trainingconcerning older people with intellectu-al disability.

Later life issues Bigby, C. (1997). Later lifefor adults with intellectualdisability: A time of oppor-tunity and vulnerability.Journal of Intellectual &Developmental Disability. Vol.22; No. 2 pp97-108.

l Many 'younger' old people with intellec-tual disabilities are still healthy and pro-ductive and are able to pursue new rolesand experiences (as with the generalaged population).

l There is a need for services to provideoptimal living environments, skill main-tenance and development, stimulatingleisure, recreational and social opportu-nities appropriate to each individual'srate of ageing.

l Clustering a small group of people withintellectual disabilities who have similar

l Need for staff within both specialist disabilityand generic aged care services to develop theirknowledge of and expertise in working withageing people with intellectual disability.

(continued)Access

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specialist needs within generic agedservices (such as occurs for some peo-ple from non English-speaking back-ground). This would ensure specialattention was paid to their needs withina generic service.

l Place more emphasis on alternatives tosupported accommodation with peopleremaining in their private home andhaving frequent contact with a key net-work member who can oversee provi-sion and monitor domiciliary care.

l Minimise disruption of networks andfacilitate the continuation of relation-ships eg when the person moves out oftheir parental home or moves from onesupported accommodation to another.

l Develop a pro-active policy towards theprovision of specialist and generic serv-ices for older people with an intellectualdisability.

(continued)Later life issues



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l There is a strategic importance of col-laboration and cooperation betweenthe aged care and disability systems toensure optimum service provision,avoid duplication, utilise availableexpertise and maximise consumerchoice and positive outcomes.

l Training for generic service staff (aged care)needs to occur provided by the disability spe-cialist service system.

l Staff in disability services need to developexpertise in issues both of ageing, and of sup-porting and negotiating with informal supportnetwork members.

Community services Buys, L.R. & Rushworth, J.S. (1997) Community serv-ices available to older adultswith intellectual disabilities.Journal of Intellectual &Developmental Disability. Vol.22. No. 1 pp29-38.

l Older adults with an intellectual disabili-ty require a combination of age and dis-ability-related assistance in order tomeet their overall needs for independentliving.

l Linkages between specialist disabilityand generic aged care services arerequired so that older adults with intel-lectual disabilities are less at risk of earlyinstitutionalisation in high support care set-tings.

·l All people working with, or likely to work withpeople with intellectual disabilities requireproper training in the mental and physicalhealth aspects of ageing with a intellectual dis-ability.

Dyspraxia

Down syndrome

Dalton, A. J. & Fedor, B. L.(1998). Onset of dyspraxiain aging persons with Downsyndrome: Longitudinalstudies. Journal ofIntellectual & DevelopmentalDisability.Vol. 23. No. 1 pp13-24

l Dyspraxia consists of a partial loss ofthe ability to perform purposeful orskilled motor acts. Progressive dysprax-ia has long been recognised as symptomof Alzheimer disease in the generalpopulation.

l A test has been specifically constructedand standardised for persons withDown syndrome to document the onset

Bigby, C. (1998). Shiftingresponsibilities: The pat-terns of formal service useby older people with intel-lectual disability in Victoria.Journal of Intellectual &Developmental Disability. Vol.23, No. 3, pp 229-243

Formal service usepatterns



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of dyspraxia among aging adults withDown syndrome. The DYSPRAXIAscale for adults with Down syndrome isa direct performance test containing 62items of simple sequences of highlyfamiliar voluntary movements. Threeparts: Psychomotor skills (Part 1);Apraxia (Part 2); Body parts and orien-tation/coin task (Part 3).

Breast cancer screening

Community grouphomes

(continued)Dyspraxia

Down syndrome

Davies. N., Duff. M. (2001).Breast cancer screening forolder women with intellec-tual disability living in com-munity group homes. Journalof Intellectual DisabilityResearch Vol. 45, Part 3, pp253-257.

l Study explores the extent to which serv-ice users with intellectual disability (ID)were taught about breast self-examina-tion and the need for breast screening.

l Training of GPs in how best to offer health pro-motion and screening services to women withintellectual disabilities.

l Need for multi-format information for womenwith ID about the need for, and how to be awareof, signs of potential problems in their ownbreasts.

l Mammography service providers need to explorewhy many women with ID are being omittedfrom their data bases.

Home-based support Elkan, R., Kendrick, D.,Dewey, M., Hewitt, M.,Robinson, J., Blair, M.,Williams, D., & Brummell,K. (2001). Effectiveness ofhome based support forolder people: systematicreview and meta-analysis.

l An evaluation of the effectiveness ofhome visiting programmes that offerhealth promotion and preventative careto older people. Relates to the generalaged population however principles maybe applied within the disability sector.

l Systemic review and meta-analysis of 15studies of home visiting found that



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Residential plans

Ageing parents

Freedman, R. I.,Wyngaarden Krauss, M., &Melick Seltzer, M. (1997).Aging Parents' ResidentialPlans for Adult Childrenwith Mental Retardation.Mental Retardation. Vol. 35,No. 2, pp. 114-123.

l Lack of planning creates significant dif-ficulties for family members when a cri-sis does occur (such as the death orincapacity of a parent) and has reper-cussions for the service delivery system.

l This research found that active planningby families can make a difference.Having a residential plan results in agreater probability of placement thandoes not having a residential plan, how-ever it does not guarantee a placement.

l There is a challenge for families and for theservice providers with whom they interact tomarshal the energy and vision to engage inplanning for the future.

British Medical Journal pp.323-719

home visiting was associated with a sig-nificant reduction in mortality. Homevisiting was associated with a significantreduction in admissions to long termcare in members of the general elderlypopulation.

(continued)Home-based support

Later-life planning Heller, T., Miller, A. B.,Hsieh, K., & Sterns, H.(2000). Later-Life Planning:Promoting Knowledge ofOptions and Choice-Making. Mental Retardation.Vol. 38, No. 5, 395-406.

l A person-centered later-life planningtraining programme designed to teacholder adults with mental retardationabout later-life planning issues andincrease their participation in choice-making.

l Major goals of the programme are to(a) increase the participants' knowledgeof later-life issues and options, (b) facili-tate greater individual choice and partic-

l The training curriculum is the Person-CentredPlanning for Later-Life: A Curriculum forPerson With Mental Retardation. Training top-ics included choice making; living arrangements;work options, volunteer, and new work roles;health/wellness; use of leisure time and recre-ation; etc.

l Training intervention was conducted in smallgroups of 5 to 7 people in 17 weekly 2 hourclasses and 2 off-site field experiences over a 4-month period.



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ipation in decisions that influence theirlives, (c) help participants set realisticgoals and (d) increase participants' lifesatisfaction.

(continued)Later-life planning

Sensory impairments Janicki, M. P. & Dalton, A.J. (1998). Sensory impair-ments among older adultswith intellectual disability.Journal of Intellectual &Developmental Disability. Vol.23. No. 1 pp 3-12

l Rates of vision or hearing loss doubleafter the age of 60 years and triple afterthe age of 80 years. These findingsshould be used to establish activescreening and remediation activitiesamong older adults. This is crucialgiven the unreliability of self-reporting(of health problems) among adults withintellectual disabilities.

l Knowing that someone is experiencingsensory loss can help with designingcompensations for how that personinteracts and communicates.

l System-wide approaches to care andmanagement are required.

l Screening should occur in settings thatare familiar to the person with an intel-lectual disability.

l When a communication deficit is a bar-rier, observational assessments may alsobe required prior to formal screening.

l Sensory deficits occur with increased frequencywith advancing age among people with intellec-tual disabilities. There needs to be training ofstaff and other carers about vision and hearingproblems and the consequent problems whichmay develop in interpersonal, communication,and adaptive functioning.

l Specialist opthalmologists, optometrists andaudiologists require training in screening/test-ing adults with intellectual disabilities.



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Mortality and morbidity

Health service considerations

Janicki, M. P., Dalton, A. J.,Henderson, C. M., &Davidson, P. W. (1999).Mortality and morbidityamong older adults withintellectual disability: Healthservices considerations.Disability and Rehabilitation.Vol. 21, No. 5/6, 284-294.

l The results of this research suggest thatthe longevity of adults with intellectualdisability, whose aetiology is not attrib-utable to organic causes, is progressivelyincreasing.

l The longevity of adults with Down syn-drome has increased markedly over thepast 50 years.

l The causes of death for the studycohort were similar to those of the gen-eral older population, with cardiovascu-lar, respiratory and neoplastic diseasesamong the prominent causes of death.

l Prophylactic health practices need to beput in place to delay the onset or mini-mize the occurrence of life threateningdiseases. Risk modification practices(including health promotion), screeningprotocols, relevant treatment practicesand immunization schedules will formpart of the practices.

l Ageing, disabilities and health care sys-tems need to develop long-range plansto increase their ability to accommodatethe large increase in the number ofadults with ID who will live longer andin better health whilst also planning forthe needs of older adults in the fourthage who grow frail due to advanced ageor who will be affected by dementia orother incapacities.

l Greater attention needs to be given to trainingof health care professionals in the area of geri-atric medicine and intellectual disability.

l The results of the survey has implications forclinical practice and health personnel training.

l Staff working with people with disabilities andtheir carers need to be aware of age-associatedchanges and conditions.

l Greater human and financial investment in uni-versity and service agency training programmeswill be required in the area of geriatrics andintellectual disability.

l There is a need for a research agenda to exam-ine the relationship between care practices andlongevity, test the benefits of preventive healthmanagement, determine what factors aid somepersons to survive into old age while other donot, examine older age care models, and evalu-ate the factors contributing to successful ageingamong persons with ID



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Dementia prevalence Janicki, M. P., & Dalton, A.J. (2000). Prevalence ofDementia and Impact onIntellectual DisabilityServices. Mental Retardation.Vol. 38, No. 3, 276-288.

l Highlights the need for early and repeat-ed assessments of people with mentalretardation, the adaptation of servicesto meet the increased demand for serv-ices associated with the progressivenature of Alzheimer disease, and theepisodic deterioration associated withother dementias.

l Necessity of service providers placing greateremphasis on supporting 'ageing in place' bymore staff training & modifications to physicalenvironments & adaptations to programmes tomake them more 'dementia capable'. Need tobe more proactive at helping families and othercarers become trained to raise their "index ofsuspicion".

Later-life planning Mahon, M. J., & Goatcher,S. (1999). Later-LifePlanning for Older Adultswith Mental Retardation: AField Experiment. MentalRetardation. Vol. 37, No. 5,371-382

l 'The Supported Leisure Programme' aleisure education-based later-life plan-ning model for older adults with mentalretardation.

l Programme incorporates three phases:retirement and leisure awareness anddecision making; person futures plan-ning (PATH planning - PlanningAlternative Future for Tomorrow withHope); leisure initiation through actionplanning.

l Leisure education specialist trained accordingto the process delineated in Isfeld and Mahon(1997).

l Phase 1 participants take part in leisure educa-tion sessions designed to enhance their aware-ness of the concepts of retirement, leisure andthe resources that exist in their community andto teach them how to make decisions aboutwhat to do for leisure. Once options are iden-tified this phase includes visits to communityrecreation sites corresponding to identifiedleisure interests.

l Phase 2 participants, members of their familyand significant others take part in a PATHplaning meeting to set goals around what theperson wants to achieve/participate in. What,where, with whom, when, what needed etc. alldetailed. Important to identify natural sup-ports within the participant's community.

l Phase 3 participants taught to make a LeisureAction Plan using a Leisure Action Plan card -


Part


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sticker pictures used to represent what, withwhom, where, stuff, when. Participants taughtto initiate their plan by using their card as aself-monitoring device. Each participantassigned a leisure buddy (volunteer) who assiststhem with transportation and facility usage inthe early stages.

(continued)Later-life planning

Life-expectancy Patja, K., Iivanainen, M.,Vesala, H., Oksanen, H., &Ruoppila, I. (2000). Lifeexpectancy of people withintellectual disability: a 35-year follow-up study.Journal of Intellectual DisabilityResearch. Vol. 44, Part 5, pp591-599.

l People with intellectual disability nowlive longer than previously expected,and the ageing of people with mild IDappears to be equal to that of the gen-eral population, posing new challengesto health care professionals.

l Epilepsy and/or hearing impairmentincreased the relative risk of death forall levels of ID.

l For people with profound ID, the pro-portion of expected life lost was .20%for almost all age groups.

l There is a new and growing group ofageing people with special needs whowill have to be catered for by healthservices.

l Health professionals need accurate informationon life expectancy to provide counseling forfamilies, as well as to plan care and forecastneeds for different services.



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Alzheimer dementia

Down syndrome

Temple, V., Jozsvai, E.,Konstantareas, M. M., &Hewitt, T. A. (2001).Alzheimer dementia inDown's syndrome: the rele-vance of cognitive ability.Journal of Intellectual DisabilityResearch. Vol. 45, Part 1, pp47-55

l The study compared individuals withDown syndrome who were found tohave symptoms of dementia with thosewho remained symptom-free to deter-mine if the two groups differed in theirlevel of education, employment, recre-ational activities, years in an institutionor overall level of cognitive functioning.

l Neuropsychological testing, caregiverreports and Dementia Scale for Downsyndrome (Gedye 1995) were used totest the hypothesis.

l Those people with Down syndromewith a higher level of education werefound to have more brain deteriorationwith fewer symptoms, suggesting thateducation may have been associatedwith a protective effect. Higher levelsof education may be associated withgreater synaptic reserve but could equal-ly reflect environmental enrichmentand/or greater genetic endowment.More challenging employment andfewer years in an institution were alsofactors.

l Continued education, involvement in work andparticipation in stimulating activity may delaythe observation of symptoms of Alzheimer's inpeople with Down syndrome.·Highlights theimportance of education and other forms ofactivity and ability in lower incidence ofdementia.



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Age-based disparitiesin service provision

Walker, A. & Walker, C.(1998). Age or disability?Age-based disparities inservice provision for olderpeople with intellectual dis-abilities in Great Britain.Journal of Intellectual &Developmental Disability. Vol.23, No. 1 pp25-40

l Staff training required to address 'ageist' atti-tudes, double jeopardy (being disabled andbeing older) and stereotypes reported by directcare staff ie the ideas that older people withdisabilities are unable to learn new skills; wishto have a quiet, sedentary lifestyle; should leavetheir employment; cannot get into alternativeday services

Dementia

Care staff knowledge

Whitehouse, R.,Chamberlain, P., & Tunna,K. (2000). Dementia inpeople with learning disabil-ity: a preliminary study intocare staff knowledge andattributions. British Journal ofLearning Disabilities Vol. 28No. 4 pp 148-153

l Staff induction pack Working with OlderAdults with a Learning Disability.

l Staff working with older adults with learningdisability require knowledge of dementia thatcovers both the identification of observablechanges which may occur in people over timethat are not part of the normal ageing processand how to manage people who may be suffer-ing from dementia.


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Part 2 - Reports/Issues Papers/Manuals

Carers Australian Bureau ofStatistics (1993). Disability,Ageing & Carers: Summaryof Findings. BelconnenACT. Catalogue No. 4430.0

l The national 1993 Survey of Disability,Ageing and Carers was conducted toprovide up-to-date data on types of dis-ability, level of severity of handicap,current and future care needs, the needfor and provision of help and theeffects of the caring role on carers.

Day support Fyffe, C., & Bigby, C. (2000)Day Support Options for OlderAdults with a LifelongDisability. Melbourne:LaTrobe University's Schoolof Social Work and SocialPolicy contracted by theDisability Services Divisionof the VictorianDepartment of HumanServices.

l Report looking at who are the olderpeople requiring day support; character-istics of effective day support for olderpeople and barriers to this.

l Staff attitudes, training and knowledge werehighlighted as areas requiring further work.

Quality of life

Service provision

Gething, L. (June 1999).We're Growing Older Too -quality of life and serviceprovision issues for peoplewith longstanding disabili-ties who are ageing.University of SydneyCommunity Disability andAgeing Programme.

l Report looking at quality of life andservice provision issues for people withdisabilities who are ageing.



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Future planning

Communitydevelopment

Janicki, M. J. (1991). Buildingthe Future: Planning andCommunity Development inAging and DevelopmentalDisabilities. Albany, NewYork:CIPADD Publications.

l A how-to manual which assumes thatboth generic and specialised systems ofcare and services are needed to plan foraccommodating older persons with life-long disabilities.

l Help identify local barriers to planning,networking, training and programmedevelopment and offers suggestions onhow to overcome these.

l Section 7 on Building Partnerships maybe of particular use in developing part-nerships between disability and agedcare networks. Whilst this is writtenfrom an American perspective, it can beadapted for the NSW setting.

l Section 8 discusses the development of trainingand education programmes. It highlights theimportance of staff training in the successfulintegration of people with disabilities into ageappropriate programmes in generic services.·Includes sections on how to assess trainingneeds of staff; different training approaches(develop cross-training/inservice training;organising conferences and teleconferences;"train-the-trainer" approaches; staff exchanges);selecting topics for training; evaluating training.Includes a list of training resources.

IntegrationProgramme ideas

Janicki, M. P., & Keefe, R.M. (1992) IntegrationExperiences Casebook:Programme Ideas in Aging andDevelopmental Disabilities.Albany, New York, NewYork State: Office ofMental Retardation andDevelopmental Disabilities

l Thirty eight (38) case studies illustratinga diverse range of models and practiceexperiences that aid seniors to retire,participate in programmes and servicesand become part of their community'sageing network.

l Section 1 Bridging Networks

l Section 2 Top Down Efforts

l Section 3 Retirement AssistanceVentures

l Section 4 Pull-Out Programmes

l Section 5 Senior CompanionProgrammes



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l Section 6 Senior Centre Ventures

l Section 7 Social Model SiteProgrammes

l Section 8 Adult Day Health ModelProgrammes

l Each section is organised with a CaseAbstract; Introduction; Project descrip-tion; Lessons Learned and PartingComments.

l Contact details are provided for eachentry.

Legal services

Carers

Keyser, P., Carney, T. &Tait, D. (1997) 'I hope he diesbefore me': Caring for AgeingChildren with IntellectualDisabilities. and 'Against theOdds': Parents withIntellectual Disability. AReview of Legal Servicesand Options for Peoplewho Lack Competency andtheir Carers. Report to theDisability Services Sub-committee.

l Highlights the need to:

1. Reduce problems of access by pro-viding information about services atkey access points;

2. Strengthening referral networks via aweb site on the Internet to provide acommon pool of information.

3. Sensitizing services to maximizepeople with disabilities and theirfamily's personal autonomy. Theestablishment of graduated mecha-nisms for monitoring and reviewingservice provision; training of privateadvocates to ensure this; enhance-ment of opportunities for informalplanning to be developed into plans

(continued)IntegrationProgramme ideas



153


which are useful, flexible andreviewable and provision of ongoingsupport and advocacy for peoplewith intellectual disabilities (and theirchildren).

(continued)Legal services

Carers

l Improvement in the education (and continuingeducation) of legal and social work profession-als in disability service and disability law issues.

Dementia care issues Koenig, B. R. (Ed.).(1995).Aged & DementiaCare Issues for People with anIntellectual Disability.Brighton, South Australia:Minda Incorporated. Vol.1 Literature Review &Survey of Carers;Vol. 2Best Practices;Vol. 3Assessing Change.

l Defines Best Practice as the integrationof a number of related concepts into aholistic approach to organisationalchange. Best Practice is about constant-ly changing and adapting to new pres-sures to seek the best way of doingthings. It is not measured simply in thecost of a product, but includes quality,timeliness of delivery and outcomesachieved, particularly customer satisfac-tion. Vol. 2 p. 3

l Minda Inc. is a South Australian organi-sation which states that it has taken aclear leading role in an endeavour toaddress the issues of ageing and associ-ated problems for persons with an intel-lectual disability.

l Focus of training on providing carer with infor-mation about aspects of aged and dementiacare so that changes in the individual's condi-tion are observed and appropriate strategies tobest meet the person's needs at that time can beimplemented;

l Topics include: Health; Physical Decline;Behaviour; Communication; Social Aspects;Environment & Alternative Therapies.

Future directions

Advocacy

National IndustryAssociation for DisabilityServices (ACROD) NSWDivision; Aged &Community ServicesAssociation of NSW &

l Possible directions for the future:ØProviding comprehensive assessmentfor people with complex care needs(incorporating carer's assessment) andongoing reassessment to respond tochanging needs;



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ACT (ACS). and theCouncil of Social Service ofNSW (NCOSS). (October2001) Issues Paper: Peoplewith a Long Standing Disabilitywho are Ageing. NSWIndustry Group on PeopleAgeing with a Disability

l Challenging perceptions within the dis-ability and aged care sectors to ensureflexible, appropriate and timely servicesfor people with disability who are age-ing;

l Developing responsive, integrated mod-els of service provision that supportcollaboration and address the transitionissues for people ageing with disability;

l Access to advocacy services for peopleageing with disability to ensure access toup-to-date information on and access toappropriate services.

Opportunities Ozanne, E., Bigby, C.,Forbes, S., Glannen, C.,Gordon, M., Fyffe, C.(1999).Reframing Opportunitiesfor people with an IntellectualDisability. Victoria: TheUniversity of Melbourne,School of SocialWork,Chapter 7 pages 253-310 - Christine Bigby

l Recommends the development of pro-gramme linkages with generic communi-ty wide Third Age retirement pro-grammes and allied health programmes;

l Adult Training and Support Services(Victoria) e.g. Karingal in Geelong;Northcote-Preston Helping HandAssociation; Brotherhood of St.Laurence; Kootammarri Association,ACT; Minda, South Australia; HornsbyChallenge, NSW; Advocacy/buddy sys-tems in USA (Janicki) Adult homeboard schemes, USA; Key Ring Model,UK.

l Highlights the need for staff training in boththe disability and aged care sectors to raise thesensitivity of staff to the issues surroundingboth intellectual disability and ageing;

l Theories of successful ageing;

l Impact of ageing on individuals with intellectualdisability;

l Existence of ageist assumptions and stereo-types;

l Mentions (p.295) several comprehensive model-training programmes developed overseas;

l At least one graduate course on Ageing andDisability offered by an Australian university.

(continued)Future directions

Advocacy



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Needs of ageingfamily members

Parmenter, T. R., Atkinson,N. & Yazbeck, M. (1996).The Needs of Aging Familiesand Their Relatives. Sydney: AUnit for CommunityIntegration Studies, Schoolof Education, MacquarieUniversity. * Report forThe House With No Steps.,Sydney, NSW, Australia.Contact the Centre forDevelopmental DisabilityStudies: (02) 8878 0500

l Major concerns expressed by familymembers:

l Security for their relative as they agedand parents were no longer able to bethe caregivers;

l The need for some form of advocacysupport;

l The need for retirement options andplanning;

l Medical needs recognised and adequate-ly met;

l Financial security and protection.

l Contact with community health agencies toassist in developing an ageing awareness pro-gramme for family members, support staff andhealth professionals.


Part 3 - Books


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Planning

Transitions

Bigby, C. (2000). Moving onWithout Parents: Planning,transitions and sources of sup-port for middle-aged and olderadults with intellectual disability.Sydney, NSW: Maclennan &Petty

l Looks at the support networks of olderpeople with intellectual disability

l Informal - existence of a key personproactively overseeing the wellbeing ofthe older person with an intellectual dis-ability. Maybe a parent, spouse, or sib-ling. Sibling-in-laws, distant relatives,friends, acquaintances , neighbours andchurch connections can form part ofpeople's informal support networks.

l Formal - supported employment, dayactivity and leisure services, respite care,domiciliary or outreach services, resi-dential primary care, case managementservices, Guardianship, FinancialAdministrators

Aged care sector

Introduction

Flanagan, P., & Stoyles, M.(2000). In their shoes: Caringfor residents as individuals. AGuide for all staff working inresidential aged care. SouthMelbourne, Victoria: Aged& Community ServicesAustralia

l An introduction to providing qualityresidential care in the aged care sectorhowever it has applicability to supportedaccommodation services for peoplewith disabilities, and in particular olderpeople with disabilities.

l A guide written to help with the orientation ofall new staff, particularly carers, and in-housetraining of existing staff in residential aged carefacilities.

l Aims to help new staff to understand residentsand treat them as individuals who have a life-time of experience and history behind them.



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Quality of life

Rights

Herr, S. & Weber, G.(1999). Aging, Rights, andQuality of Life: Prospects forOlder People withDevelopmental Disabilities.Baltimore, Maryland: PaulH. Brookes

l The book explores issues related to theextended life-spans for people withdevelopmental disabilities in affluentcountries around the world.

l Improving quality of life issues arespecifically discussed under the follow-ing chapter headings:

l Human Rights & Legal considerations;

l Quality of Life & Quality Standards;

l Service Models & Innovations;

l Future Directions

Community support Janicki, M. P. & Ansello, E.

F. (2000) Community Supports

for Aging Adults with Lifelong

Disabilities. Maryland,

USA:Paul. H. Brookes

Publishing Co.

l Discusses the pertinent issues that faceolder people with disabilities as they age,models of aiding families and designsfor making the human services infra-structure responsive to their needs.

l Aimed at managers, practitioners, plan-ners, educators, advocates, families andinterested community members.

l Introduces the concept of 'assistedautonomy' - to help people remain asindependent in their community as pos-sible.

l Outlines the key principles of Qualityof Life: well-being; holism; life span;choice; personal perception; empower-ment and variability.

l Training staff to implement a 'communitymembership approach' - provides preparationto retirement and participation in a life resem-bling a more typical active retirement.

l Cross-training of staff in the disability andaged care sectors via identification of whateach knows of the other's sector; identifyinglocal personnel to conduct cross-training.Includes a "rough composite of requestedcross-training content" (pa. 467).

l Concurrent and coordinated training of olderadults with disabilities (and their family care-givers) in Self-Advocacy and service coordina-tion will strengthen their capacities to continuecommunity living.



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Dementia Janicki, M.P. & Dalton, A. J.(1998) Dementia, Aging, andIntellectual Disabilities: AHandbook. Castleton NY:Hamilton Printing Co.

l The text explores the impact ofAlzheimer's disease and other dementiason people with intellectual disabilitieswith and without Down syndrome.

l Biomedical considerations; assessmentconsiderations; clinical considerations;programme considerations; educationand policy considerations are all cov-ered.

l The book is a comprehensive andinformative which would be very usefulto people working with, or caring for,people with intellectual disabilities whoare ageing and who develop dementia.

l Education and training are covered in Part 6 ofthe book

Significant life issues Janicki, M. P. & Wisniewski,H. M. (Eds.). (1985). Agingand Developmental Disabilites:Issues and Approaches.Maryland, USA: Paul. H.Brookes Publishing Co.

l Offers workers in developmental dis-abilities and gerontology an opportunityto explore the significant issues thataffect the lives of older disabled per-sons.

Communicationtechnologies

Vision

Hearing

Speech

Lubinski, R., &Higginbotham, D. J. (1997)Communication Technologies forthe Elderly: Vision, Hearingand Speech.. SanDiego/London: SingularPublishing Group, Inc

l The book aims to enhance the commu-nication opportunities of elders throughthe use of communication technologies.

l Changes in vision, hearing and commu-nication as people age, along with assis-tive technologies are described and dis-cussed.



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Implications of ageing process

Maaskant, M. A. (1993).Mental Handicap and Ageing.Kavanah, Dwingeloo.

l Dutch study looking at the implicationsof the ageing process in residences forpeople with mental handicap at the indi-vidual level and on a population-widelevel.

Integration

Specialized services

Mailick Seltzer, M.,Wyngaarden Krauss, M.(1987) Aging and MentalRetardation: Extending theContinuum. Washington DC,USA.: AAMR Monographs.

l Outlines three options for providingservices to elderly persons with mentalretardation:

1. The age integration option - include eld-erly mentally retarded persons in pro-grammes serving mentally retardedadults of all ages.

2. The generic services integration option -integrates elderly mentally retarded per-sons in services designed for the general(i.e. nonretarded) elderly population.

3. The specialized service option - specialservices are developed for elderly per-sons with mental retardation in order torespond to their special needs.

Options

Training

Stroud, M., & Sutton, E.(1988). Activities Handbook& Instructor's Guide forExpanding Options for OlderAdults with DevelopmentalDisabilities. Maryland: Paul.H. Brookes Publishing.

l The Activities Handbook contains les-sons grouped into seven areas of com-petence: grooming/health; clothing;social interaction; personal security;community activities; public transporta-tion; and leisure/recreational activities.

l Practical, hands-on, how-to guide.

l The Instructor's Guide consists of a lessonplan with objectives; activities; materials andevaluation.

l Part 1: teaching the people with developmentaldisabilities.

l Part 2: teaching guide for 'instructors' and arange of issues related to ageing.



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Options

Practical guide

Stroud, M. & Sutton, E.(1988) Expanding Options forOlder Adults withDevelopmental Disabilities: APractical Guide to AchievingCommunity Access. Maryland,USA: Paul. H. BrookesPublishing Co.

l Access Assessment of Older Adultswith Developmental Disabilities (pa.103-107) provides a useful comprehen-sive checklist of an individual's physicalcondition, social competencies, cogni-tive functioning, leisure and recreationactivities interview, community servicesand providers.

l Community-based activity site checklistwhich looks at the Accessibility andSafety of a venue; the Social Climateand Expectations; and aspects of theprogramme (pa. 111).

l Preventing (maladaptive behaviour)problems in community settings is alsodiscussed (pa 139-164)

Choice

Change

Sutton, E., Factor, A. R.,Hawkins, B. A., Heller, T.,& Seltzer, G. B. (1993) OlderAdults with DevelopmentalDisabilities: Optimizing Choiceand Change. Maryland, USA:Paul. H. Brookes PublishingCo

l Section 1. Issues of physical and cogni-tive well-being.

l Section 2. Changes in social behaviour,relationships and inclusion that occurover time among older people withintellectual disabilities living in differentkinds of residential settings.

l Section 3. Small-scale community livingoptions for older adults with develop-mental disabilities.

l Section 4. Variety of service trendsaffecting older adults with developmental

l Description and analysis of cross training(interdisciplinary and interagency) within theageing and developmental disabilities servicessystems (Chapter 14 pp. 239-256).



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disabilities including cross-trainingamong agencies of the ageing and devel-opmental disabilities services systems.

Choice

Change, continued

Evaluation of the Sourcebook


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In order to ensure that this sourcebook meets its aims of providing examples of good practice

in ageing in place for people with lifelong intellectual and/or physical disabilities who are age-

ing, CDDS would value feedback on how useful/informative you found the sourcebook to be.

Please print this page, complete the following evaluation and returnit to:

Ageing in Place Sourcebook Evaluation

Centre for Developmental Disability Studies

PO Box 6

Ryde NSW 1680

1. Does the work you do relate to people with:

(Please tick all that apply)

� Intellectual disabilities � Physical disabilities

� Sensory disabilities � Ageing people

2. How useful have you found the Ageing in Place Sourcebook?

(Please tick the answer that applies)

� Extremely useful � Useful

� Somewhat useful � Not useful at all

3. What entries were most useful to you?

(Please tick all that apply)

� International material � Australian material

� NSW examples � Bibliography

4. How did you find the layout of the Sourcebook?

(Please tick the answer that applies)

� Easy to follow � Not easy to follow

Comments regarding the layout:

ageing in place - redland city...12. disability services, queensland - quality of life for a person...

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