Ageing, Disability & Home Care

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Completed research

These research projects have been undertaken with assistance from Ageing, Disability and Home Care (ADHC), Department of Family and Community Services NSW.

The information and views contained in these studies do not necessarily, or at all, reflect the views or information held by ADHC, the NSW Government or the Minister for Ageing, and Minister for Disability Services.

For further information, please contact the Research and Evaluation Unit on 02 8270 2381.

2014

Angela Dew, Tania De Bortoli,  Jennie Brentnall, Anita Bundy, Faculty of Health Sciences, The University of  Sydney (May 2014)

This report presents the findings of a systematic review of the  literature on interventions provided in mainstream settings for children with  disabilities aged 0 to 8 years. It explores best practice for promoting the  inclusion of young children and their families, benefits and outcomes of  inclusion-based approaches, and key factors in their effective provision  (including barriers and challenges). The report identifies that while there is  limited evidence available to demonstrate the effectiveness of inclusion based  supports for children in this age group, existing evidence identifies the  potential for inclusion-based approaches to benefit children with disability  and their families.

2013

 

Evaluation of four autism early childhood intervention programs Final Evaluation Report - Executive Summary (PDF)

Emily Verstege, Liesbeth Geerligs, Fiona Christian, Ofir Thaler, Kerry Hart, Miriam Motha and Chris Milne, Ageing, Disability and Home Care (April 2013)

This report presents the findings on an independent evaluation by ARTD Consultants of Ageing, Disability and Home Care (ADHC), Family and Community Services four Autism Early Childhood Intervention programs delivered in four ADHC regions between 1 July 2008 and 30 June 2012.

The four programs - Footprints (Autism Behavioural Intervention (ABI) NSW), Building Blocks, More Than Words and Autism Pro (Autism Spectrum Australia (Aspect) NSW) - were funded through Stronger Together: A new direction for disability services in New South Wales, 2006-2016, under which an additional $2bn of disability services funding was provided. These autism early childhood intervention programs provide specialist intervention services for children with autism aged 0 to 5 years, and were designed according to best practice principles. The programs vary in terms of their philosophical orientation, delivery (mode, intensity, duration) and the intervention focus (child or parent).

2012

People with intellectual and other cognitive disability in the criminal justice system (PDF)

Professor Eileen Baldry, Dr Leanne Dowse, Ms Melissa Clarence, University of New South Wales (December 2012)
This report outlines the key findings of a research project on a cohort of 2,731 individuals whose mental health disorders and cognitive disability (MHDCD) diagnoses are known, who have been in prison and whose criminal justice and human service contacts have been compiled into a linked and de-identified dataset (he MHDCD dataset).

The main aims of this project were to:

  • Explore the pathways people with cognitive disability take into and through the criminal justice system;
  • Investigate the impact interagency, and agency with individual interactions have upon people with cognitive disability in relation to their involvement with the criminal justice system; and
  • Highlight potential points of intervention to assist to divert people in this group from the criminal justice system.

Use of emergency and inpatient hospital services by ADHC clients - Final report (PDF)

Anna Dayton and Anna Cohen, PricewaterhouseCoopers (December 2012)
ADHC and NSW Health have undertaken a data linkage project to better understand the hospitalisation trends and health needs of ADHC clients. The data linkage involved available data from 2005/06 – 2009/10 from the following data sets:

  • Disability Services (DS) and Home and Community Care (HACC) National Minimum Data Sets (NMDS); and
  • NSW Health Admitted Patient Data Collection and Emergency Department Data Collection.

NSW Health prepared the data linkage, and PwC analysed the matched records, addressing a range of research questions in relation to service usage patterns over a five year period, factors influencing presentation, admission and length of stay, and whether disability service usage has an impact on hospital use. The report found that ADHC clients have a higher rate of hospitalisation than the NSW population, but HACC clients under 65 are the more frequent and intense users of hospital services.

Rural and Remote Project: Video Conferencing for Case Conferences (PDF)

Children, Family and Therapy Team, Ageing, Disability and Home Care (January 2012)
A project which examined the use of video conferencing to conduct case conferences for children with a disability in rural and remote areas of NSW.

2011

Ageing in Place: Impacts of Ageing on Accommodation Services Review (PDF)

O'Connell Advisory (Dec 2011)
In 2010, ADHC contracted O'Connell Advisory to undertake the Ageing in Place: Impacts of Ageing on Accommodation Services research project. Over 500 people were consulted through an Ageing in Place strategy for ADHC funded and operated accommodation services.

The purpose of the research project was to identify the ways in which ageing impacts the support needs of people with a disability in order to plan and develop a service response strategy that meets clients' changing needs and promotes ageing in place, where appropriate and desirable.

The Final Report and ADHC's response to its recommendations are available below:

Young carers: social policy impacts of the caring responsibilities of children and young adults (PDF)

Bettina Cass, Deborah Brennan, Cathy Thomson, Trish Hill, Christiane Purcal, Myra Hamilton and Elizabeth Adamson, University of New South Wales, Social Polcy Research Centre (Oct 2011)
This research is a theoretically-informed and policy-focused quantitative and qualitative study on young carers. The findings provide innovative contributions to theories of care provided by young people; evidence about the diverse socio-economic and demographic characteristics of young carers and care recipients, young people's pathways into care provision, and the impacts of caring on their education, employment, social participation and health; and the development of supportive policies and services.

Local Government and Ageing - Literature Review (PDF)

Elizabeth O'Brien and Peter Phibbs, University of Western Sydney (June 2011)
This review examines literature related to local government and ageing to reveal: the impacts ageing has on economic growth, infrastructure and services; and the contributions older people make to the economy and the social fabric of local communities.

Pilot of case management for young people with challenging behaviour: Executive Summary (PDF)

Emily Verstege, Kerry Hart, Ofir Thaler and Chris Milne, ARTD Consultants (June 2011)
This program was developed for young people in Year 6 to Year 10 with autism or intellectual disability with challenging behaviour and who are at risk of school suspension or expulsion. An evaluation of the program was conducted to determine how effectively the program has helped young people in the target group achieve outcomes at home, school and in the community, and how the program partners have built the partnership on which the program depends. Critical success factors and barriers for effective case management within the partnership model were identified to help inform future implementations of the program.

Evaluation of the Demonstration Support Networks Program (PDF)

B.J. Newton, Marianne Rajkovic, Elizabeth Adamson and kylie valentine, Social Policy Research Centre, University of NSW (April 2011)
The Support Networks Program was designed to provide support networks for children and young people with a disability, their parents and siblings. Ageing, Disability and Home Care, Department of Family and Community Services (ADHC) funded seven demonstration projects to develop, test and implement flexible and innovative practices that addressed the needs of children and young people with a disability and their families. This report describes findings from each of the seven projects reviewed for the evaluation of the ADHC Demonstration Support Networks Program.

Barriers and enablers to the use of evidence based practice (EBP) by speech pathologists working for Ageing Disability and Home Care (NSW) (PDF)

Leanne Togher, David Trembath & Michael Brunac, Faculty of Health Sciences (Speech Pathology), The University of Sydney (April 2011)

The aim of this research project was to determine the attitudes of speech pathologists in Ageing, Disability and Home Care (ADHC) towards Evidence-Based Practice (EBP) and provide training to help facilitate its use in everyday practice. Two surveys were distributed online to all speech pathologists in ADHC. The results indicated that speech pathologists believe a transition to EBP in ADHC would be a progressive step for ADHC and for speech pathology in NSW. The report recommends increased support and training from senior speech pathologists and management to further facilitate this transition.

Local Government and Ageing (PDF)

Elizabeth O'Brien and Peter Phibbs, University of Western Sydney (March 2011)
Population ageing is a pressing international policy and budgetary issue. This report explored the implications of an ageing population for local government and the future provision of infrastructure and services in NSW. The report provided a timely contribution to the literature on population ageing by reporting on the economic impact of ageing on local government.

Environmental and built factors for maintaining independence in older age (PDF)

Julie Byles, Lynette MacKenzie, Sally Redman, Anna Williamson, Lynne Parkinson, Housing and Independent Living (March 2011)
The HAIL Project has provided a detailed snapshot of homes and neighbourhoods of a sample of older people living in selected metropolitan areas, including the observation of their homes and physical functioning. The results suggested that policies and systems are needed so these homes can be appropriately modified and adapted according to current standards. These might include information services and education, incentives for people to build and modify homes appropriately and services to help people access appropriate tradespeople. The report recommends further consideration be given to adequacy and accessibility of parking; access to supermarkets, fruit and vegetables; and proximity to hospitals.

Intensive Family Support Program Review (PDF)

Sue Leahy, Klas Johansson, Andrew Hawkins and Marie Delaney, ARTD Consultants (January 2011)
This review assessed the implementation of the Intensive Family Support (IFS) Program across ADHC regions. The purpose of the review was to identify opportunities to improve the program to better meet the needs of clients and to inform the development of future IFS service guidelines. A summary of the review has been approved for public release which removes sensitive data and information about specific IFS service providers.

2010

Early Childhood Intervention Coordination Program: Information Option Project (PDF)

Sue Warth and Alison Plant, Westwood Spice (2010)
The project aimed to explore the experiences and views of families and services in seeking information about services and supports for children with a disability or developmental delay.

Measuring outcomes in community care: an exploratory study

Prof Kathy Eagar, University of Wollongong, Centre for Health Service Development (2010)
The project developed an outcomes assessment and measurement framework for use in community care. The aim was to build routine systems for measuring outcomes of community care and the degree to which goals are met.

Transformations of Care: Living the consequences of changing public policies in Australia (PDF)

Jane Mears and Eva Garcia, Social Justice Social Change Research Centre, University of Western Sydney (October 2010)
This report presents the main findings from an ADHC funded research project focussing on NSW care workers. Initially a context for research is provided, with an overview of the findings of international research, followed by a section on the funding of aged care services in Australia. Australian research on the community services industry concludes this review. From this overview it was found that very few studies look in-depth at the details surrounding the everyday life of care from the perspective of the care workers themselves. This study addresses this gap and shows the dimensions of the working lives of care workers and the challenges faced by care workers in NSW.

Acquired brain injury research project (PDF)

John Walsh and Caitlin Francis, PricewaterhouseCoopers (October, 2010)
The research investigates the incidence, prevalence and unmet needs of people with an acquired brain injury (ABI) in NSW.  It covers adequacy of compensation, quantum of cost required to meet demand, service pathways for people with dual ABI and mental health and drug and alcohol issues.  It also examines the impact on informal carers, impact of ageing and highlights comparative research.

Non-government community services workforce (PDF)

Dr Fiona Hilferty, Social Policy Research Centre, University of NSW (October 2010)
This report's findings will help in the development of capacity building and workforce development plans in the disability and community services sector.

Measuring outcomes in community care: an exploratory study (PDF)

Owen, A, Samsa, P, Fildes, D, Grootemaat, P and Eagar, K , Centre for Health Service Development, University of Wollongong (September 2010)
This report was an exploratory study of outcome measurement in community care. It describes what is known about this field of research and practice (in mid 2010). It is based on three primary sources of evidence: detailed lessons from the review of a series of linked studies by one research group (the Centre for Health Service Development, University of Wollongong – CHSD); findings from a wider review of current practice and national reforms; and targeted interviews on measuring outcomes with selected providers, clients and carers.

Growing and maintaining social networks for older people (previously called Active engagement of older people in the community) (PDF, large file >1MB)

Dr Debra Horsfall, Social Justice and Social Change Research Centre, University of Western Sydney (September, 2010)
This research explored the social networks of older people and carers receiving HACC funded services. Using an innovative "photovoice" technique, the research identified how caring can contribute to the growth of social capital.

Effective assessment of social isolation (PDF)

A/Professor Jan Sansoni, Centre for Health Service Development, University of Wollongong (June 2010)
This project reviewed the scientific and 'grey' literature concerning instruments used for the effective assessment of social isolation. The research initially identified 155 assessment instruments and used an evaluation framework to identify the most promising instruments for comprehensive review. Four instruments were selected: De Jong Gierveld Loneliness Scales; the Lubben Social Network Scales; the Multidimensional Scale of Perceived Social Support and the Medical Outcomes Study Social Support Survey for further testing and linguistic validation.

2009 

The 45 and Up Study: Exploring the health of Home and Community Care clients in NSW (PDF)

Louisa Jorm et al (December 2009)
The purpose of the study was to describe the health-related factors that are associated with use of Home and Community Care (HACC) services in New South Wales, and how patterns of use of HACC services relate to health. Data collected from a self-reported questionnaire from Australia's largest cohort study, the 45 and Up Study, was used — linked with administrative data relating to use of HACC and hospital services.

Older men and Home and Community Care services: barriers to access and effective models of care (PDF)

Men's Health Information and Resource Centre, School of Biomedical and Health Sciences, University of Western Sydney (2009)
This project investigated access to community care services by older men. The report discussed the appropriateness of existing service models to meet men’s needs. “Male friendly” elements of service provision are described and practical strategies for delivering male friendly services are discussed.

Emergency Response Program: Costing and Business Process Analysis

The Nucleus Group, Accommodation Policy and Development Directorate (October 2009)
To analyse the Emergency Response Program costing and business processes to promote efficiency and effectiveness by conducting a literature search to identify good practice, desk top review of 65 client records and interviews and discussions with staff and provide a report on the findings.

Assessment of the Health Care Needs Review Project

The Nucleus Group, Accommodation Policy and Development Directorate (October 2009)

A review of the Assessment of the Health Care Needs (AHCN) of clients in ADHC operated supported accommodation.

Co-located Review

The Nucleus Group, Accommodation Policy and Development Directorate (October 2009)

A review of the methodology for allocating support hours in co-located accommodation models was undertaken by Nucleus Consulting.

Bullying/dignity & respect

Dr Carlo Caponecchia, Support PhD Student Research, University of New South Wales (2009)
Bullying, Dignity and Respect survey is to learn about managers and employees’ awareness of bullying and their opinions on the prevention and management of bullying.  The survey was conducted in three stages, an online study of all staff, paper based study for staff without computer access and interviews with ADHC management representatives.

The survey was conducted by the UNSW and the aim of the study was to further advise ADHC about the strategies and programs to address workplace issues including bullying.

Intensive behaviour services study

Mary Ellen Burke (2009)
An analysis of the evidence base for supporting clients with significant challenging behaviours, including a targeted literature review, case study analysis and consultation.

Effective service provision in rural and remote areas (cost and other barriers)

Mr Rod Bayliss, New England HACC Development Inc. (2009)
Investigation of the existing knowledge base to inform the development of a number of strategies to assist HACC service providers in the New England area to address challenges of service delivery in rural/remote areas.

Review of future flexibility of the accommodation models in the ADHC Innovative Accommodation Framework

Paulo Macchia, Government Architect's Office (2009)
The study assessed whether the accommodation models in the Innovative Accommodation Framework (IAF) and ADHC Design Guidelines and Toolkit provide adequate flexibility for the changing needs of the residents from Stockton, Westmead and Rydalmere, and recommended modifications that would provide for future adaptability, and any likely disposal options.

Best practice models for aged care supported accommodation

Theresa Kramer, Essence Consulting Group (2009)
The program aimed to: identify the current range of aged care support models for the general community, both in Australia and overseas;  review innovative approaches associated with the existing or proposed models; provide an analysis of the benefits and disadvantages of the models, provide a brief comparative cost analysis; and provide recommendations for ADHC's future planning in regard to models and facilities to support aged care with the aim of achieving best practice and best value for investment.

Maintaining family-based placement for children and young people with disabilities

Prof Anita Bundy, Sydney University (2009)
Investigation of more efficient/effective assessment strategies to support families with the difficult task of caring at home for children with disabilities.

Peat Island quality of life study

Professor Trevor Parmenter, Centre for Developmental Disability Studies (CDDS) (2009)
The project aimed to identify and select an appropriate instrument to carry out assessments of the quality of life of residents of Peat Island.

Face and facial expression processing in children with autism, mild intellectual disability and typically developing children

Dr. Frini Karayanidis and Alicia Sercombe, University of Newcastle (2009)
The project aimed to determine difficulties experienced by children suffering from autism when processing facial expressions as compared to children with mild intellectual delays. The study also explores any effect of such difficulties on autistic individual's social skills.

The 45 and Up Study: Exploring Met and Unmet Needs for Home and Community Care in NSW

Dr. Louisa Jorm, School of Medicine, University of Western Sydney (2009)
Linking HACC MDS data, 45 and Up Study and Hospital Inpatient Data. This data linkage project investigated the patterns of use of HACC and hospital inpatient services among people aged 45 years and older in NSW. It considered the personal, social, environmental and service-related factors that influence these patterns.

Social Isolation - Development of an Assessment Tool for HACC Services

Michael Fine and Rochelle Spencer, Centre for Research on Social Inclusion, Macquarie University (2009)
This review was commissioned to provide a survey of the literature on social isolation, with the intention of identifying best practice strategies and to help develop guidelines for Home and Community Care (HACC) services. The aim of the review was to promote evidence-based practice and assist in the development of indicators of social isolation for HACC services to use in identifying and addressing social isolation.

Re-ablement of older people in Northern NSW

Aged Services Learning and Research Centre (ASLaRC), Southern Cross University (July 2009)
The main objective of the project was to develop a re-ablement model for future piloting by service providers operating in the Far North Coast of NSW and providing HACC services to older people.

Community Aged Care Capacity Mapping (PDF)

University of Technology (AccessUTS Pty Ltd) (2009)
This project identified and mapped Community Care programs provided by State and Commonwealth Governments in NSW and developed a database for planning purposes.

2008

Literature Review: Packages of Support

Professor Bettina Cass, Social Policy Research Centre (PRC), University of New South Wales (UNSW) (2008)
Literature review which investigated packaged support for frail older people and people with a disability in other jurisdictions.

Volunteer development and coordination:  An interactive model for HACC

Aged and Community Services (2008)
Review of volunteer models.

Economic, social and environmental impact of demographic change in central west NSW

Dr Jennifer Sappey, Charles Sturt University (CSU) (2008)
Mapping the aged care industry and ageing issues in the Bathurst Region.

Demographic analysis and social impact study - Kanangra Centre

Jay Lynn, BBC Consulting Planners (2008)
Demographic Study undertook a brief micro and macro level review of the demographic issues affecting planning for community-based accommodation and considered whether the proposed support places were sufficient and/or sustainable with regard to current and future needs.

Social Impact Study considered the social impacts of the redevelopment on residents, their families, staff, service delivery and other communities.

Negotiating caring and employment: the impact on carers' wellbeing

Dr Michael Bittman,Social Policy Research Centre, University of NSW and University of New England (2008)
The project examined the impact of combining employment with caring for adults or children with disabilities. An ARC Linkage project.

Support needs and service models for younger people with high support needs (PDF)

Australian Healthcare Associates (2008)
The project was managed by ADHC, New South Wales, in conjunction with a national project steering committee, on behalf of the Disability Policy and Research Working Group (formerly National Disability Administrators).

Volunteering Options for the HACC Sector

Key Insights Pty Ltd (July 2008)
Identifying strategies to support a stable and skilled pool of volunteers for the HACC sector.

CALD Dementia Strategic Model: Literature Review, Report, Model (PDF)

Cultural & Idigenious Research Centre Australia (April 2008)
The research focused on three target communities - Italian, Vietnamese and Chinese communities in NSW and involved a literature review and field work.

Consultation took place with people with dementia from CALD backgrounds, carers/family of people with dementia, CALD service providers and community based organisations and mainstream service providers and community based organisations.

Information from the literature review and field work was used to develop a strategic model of dementia care in CALD communities. Information available through the research about the Italian, Chinese and Vietnamese communities was applied to the model to assist in planning dementia service delivery to those CALD communities.

Good Practice in Administration: A Guide for non government organisations in the HACC sector (PDF)

BSR Solutions (Feb 2008)
This project developed The Good Practice in Administration Guide which presents an anthology of case studies highlighting 'good practice' administrative procedures and models among HACC organizations in the Hunter Region. The Guide includes a review of case studies with particular emphasis on the success of identified practices/models, and 'key learnings' that may be helpful for other HACC Non-Government Organisations (NGOs).

HACC Service Models for Younger Onset Dementia & People with Dementia and Behaviours of Concern Part 2: Issues for Aboriginal and Torres Strait Islander People and People from Culturally and Linguistically Diverse Backgrounds (PDF)

Carrie Hayter, Carol Vale and Merilyn Alt, Alt Beatty Consulting (Feb 2008)
This report presents findings of consultations with Aboriginal and Torres Strait Islander People and People from Culturally and Linguistically Diverse Backgrounds in the Metro North Region of Sydney. The consultations were held to assess the cultural appropriateness and relevance of recommendations of the report, Appropriate HACC Service Models for People with Younger Onset Dementia & People with Dementia and Behaviours of Concern.

The findings draw on consultations with HACC service providers, consumer representatives and other stakeholders and include a brief literature review.

How much disability is long term? (PDF)

Associate Professor Ian Cameron, Royal Ryde Rehabilitation Centre Sydney (Feb 2008)
The research followed a small sample of clients of a community nursing service, assessed their level of disability when entering the service and tracked their level of disability after three months. The project examined predictors of long-term disability and extent of disability of this group of clients. 

Futures Planning for Older Carers of Adults with Disabilities (PDF)

Aged Services Learning and Research Collaboration (ASLaRC), Southern Cross University (Feb 2008)
The project developed and trialed a model aimed at assisting older carer/s to plan ahead for a future time when they may not be able to continue to provide the level of care required for the adult with disabilities. 

Therapy Services in the Disability Sector: Literature Review (PDF)

Prof. Anita Bundy, Faculty of Health Sciences, The University of Sydney (Jan 2008)
This report presents an overview of research and practice literature on therapy (speech pathology [SP], physiotherapy [PT], and occupational therapy [OT]), for:

  • Children with a disability
  • Adults with a congenital or developmental disability 

2007

Literature review on accommodation service delivery models of care for people with an intellectual disability and significant challenging behaviours

Paul Ramcharan, Royal Melbourne Institute of Technology (RMIT) (2007)
Systematic review of the literature around the housing needs of people with the most significant challenging behaviour.

Lachlan Centre social impact study

Roberta Ryan, Urbis JHD (2007)
Social Impact Study to support decision making and planning in relation to the Lachlan Centre, a Large Residential Centre (LRC) located in North Ryde.

Lachlan Centre demographic analysis

Samantha Ross, Urbis JHD (2007)
Demographic Study to support decision making and planning in relation to the Lachlan Centre, a Large Residential Centre (LRC) located in North Ryde.

Redevelopment of the Riverside Centre, Orange - social impact study

BBC Consulting Planners (2007)
This report presented a preliminary analysis of the potential positive and adverse social impacts of redeveloping Riverside on its residents, their families and significant others, staff, the affected local communities and on service provision. 

Early childhood intervention coordination program professional development project (PDF)

Dr Tim Moore and Dr Estelle Irving, Murdoch Children's Research Institute - tim.moore@mcri.edu.au (Jun 2007)
A review of the training and professional development needs of those working in the Early Childhood Intervention sector in NSW.

Screening people with an Intellectual Disability for Dementia

Centre for Developmental Disability Studies (May 2007)
This project provides a summary of research findings on dementia screening and diagnosis in people with an intellectual disability.

Measuring the Impact of the Managing Client Health Policy on clients in DADHC Funded Services

Centre for Developmental Disability Studies - seetad@med.usyd.edu.au (May 2007)
This project researched and developed tools for the collection of data on policies, procedures and health indicators in people with developmental disability supported by ADHC (then DADHC) funded services.

Defining Dementia Service Appropriate Models: Challenging Behaviour and Younger People with Dementia (PDF)

Merilyn Alt and Dianne Beatty, Alt Beatty Consulting - malt@bigpond.net.au (Feb 2007)
The aim of the project was to develop dementia appropriate HACC service models for the two target groups: those with challenging behaviour and younger people with dementia.

2006

Modelling Future Aged Care Services Resource Requirements: evidence from the Sydney Older Persons Study

Professor Tony Broe, Ageing Research Centre, Prince of Wales Hospital (Dec 2006)
Development of a model, based on data from the Sydney Older Persons Study and population projections, which can estimate service need requirements at an LGA as well as at State level.
Reports:

Human service workers and parents with a disability working cooperatively in the best interest of the child

Dr David McConnell, University of Sydney - d.mcconnell@fhs.usyd.edu.au (Jul 2006)
The project investigated ways in which human service workers can work cooperatively with parents with a disability to achieve the best outcome for children. An ARC Linkage project.

Diverse strategies for diverse carers: the cultural context of family carers in NSW (PDF)

Beatriz Cardona, Dr Sharon Chalmers and Dr Brett Neilson, Centre for Cultural Research, University of Western Sydney - s.chalmers@uws.edu.au (Jun 2006)
The project investigated the impact of cultural factors on the caring experience, and the use of services by carers from culturally and linguistically diverse backgrounds.

The occupational performance of children who require behaviour support: an exploration of functional performance in the context of family life

Lucinda Mora, University of Sydney - lucinda@lovedthanlost.net (May 2006)
The project explored and described the function of eight young children with developmental delay and behaviour support needs, in the context of the family.

Development of NSW HACC MDS DATA cubes

Jim Hegarty, Chief Information Officer, Information Unit, Department of Ageing, Disability and Home Care (Feb 2006)
Improved availability of HACC service delivery data to regional service development and planning staff.

Classification and costing study of NSW ATLAS, Post School Options and Day Programs

Professor Kathy Eagar, University of Wollongong - keagar@uow.edu.au (Feb 2006)
The project examined the relationship between ATLAS, Post School Options and Day Program consumer characteristics and the cost of services provided to them.

Early Intervention and Family Disability Support

Professor Trevor Parmenter, Centre for Developmental Disability Studies, University of Sydney - trevorp@med.usyd.edu.au (Jan 2006)
Evidence based investigation of six service pilots originally set up to explore services for supporting people with a disability.

2005 

Inclusion of young children with disabilities in mainstream early childhood services

Gwynnyth Llewellyn, University of Sydney (2005)
Identifies service models for children with disabilities that ensure improved outcomes

Access to mainstream HACC service by culturally and linguistically diverse communities in Albury-Wodonga

Dr Gary Musselwhite, Dr Wendy Bowles and Mr Bill Anscombe, Centre for Rural Social Research, Charles Sturt University - Ph: 6933 2778 (2005)
The project identifies the HACC service needs of the CALD communities within Albury/Wodonga and the surrounding rural townships (within the Hume, Corowa, Culcairn and Holbrook Local Government Areas).

Financial security, self provision, service needs and costs: projecting the care needs and circumstances of older Australians at a detailed regional level to 2020

Dr Laurie Brown, National Centre for Social and Economic Modelling (NATSEM), University of Canberra - laurie.brown@natsem.canberra.edu.au (Nov 2005)
The development of a microsimulation model to estimate the need for care, at a statistical local area level, amongst older people in NSW. An Australian Research Council Linkage project.

Respite Models for Children under Seven Years With Challenging Behaviour

Greta Ridley, Jacqueline Roberts and Dr Roger Stancliffe, Centre for Developmental Disability Studies, University of Sydney - rogerst@med.usyd.edu.au (Nov 2005)
The project investigated appropriate and effective models of respite for children under seven years of age with challenging behaviour.

Transient Aboriginal Client Research Project (PDF)

Ellen and Stuart Davies-Meehan, Key Insights Pty Ltd, Lifestyle Solutions (Australia) Ltd - david@lifestylesolutions.org.au (Sep 2005)
Investigated service pathways and access to services by transient Aboriginal clients temporarily in the Hunter and Central Coast area, and the impact of these clients on HACC funded services.

Australian Implementation and Evaluation of Active Support (PDF)

Dr Roger Stancliffe, Centre for Developmental Disability Studies, University of Sydney - rogerst@med.usyd.edu.au (Sep 2005)
The project evaluated the trial of the UK 's Active Support Model in six ADHC group homes.

Equity of access to Home and Community Care services for boarding house residents (PDF)

Sally Robinson, Disability Studies and Research Institute - srobinson@dsri.org.au (Aug 2005)
The project identified barriers to accessing HACC services for people in Licensed Residential Centres (boarding houses).

Development of services for culturally and linguistically diverse communities in the Southern Highlands (PDF)

Mary Shiner, Cultural Partners Australia - info@culturalpartners.com.au (Jun 2005)
This project investigated access to HACC services by eligible CALD communities in the Southern Highlands , identified barriers to accessing these services and suggested strategies for improving service delivery.

Client Participation in the Individual Planning Process (PDF)

Kay Tiernay, Centre for Developmental Disability Studies, University of Sydney - rogerst@med.usyd.edu.au (Feb 2005)
The literature review examines the variety of barriers that lead to the exclusion of clients with intellectual disability from the individual planning process. The review provides information on ways of increasing client participation, examining interventions focusing on communication, preference assessment, opportunities for choice and participation in meaningful activity in the context of staff management, training and supervision.

Palliative Care for People with Intellectual Disabilities and High Support Needs (PDF)

Seeta Durvasula, Centre for Developmental Disability Studies, University of Sydney - seetad@med.usyd.edu.au (Feb 2005)
This literature review examines palliative care and the needs of people with intellectual disability, especially those with high support requirements.

Physical Activity Guidelines

Roger Stancliffe, Centre for Developmental Disability Studies, University of Sydney - rogerst@med.usyd.edu.au (Jan 2005)
This project aimed to develop Guidelines for promoting regular physical activity for people with physical and intellectual disabilities.

Review of Positive Behaviour Support (PDF)

Michele Wiese, Roger Stancliffe and Bronwyn Hemsley, Centre for Developmental Disability Studies, University of Sydney - mwiese@med.usyd.edu.au (Jan 2005)
The project reviewed available literature on positive behaviour support programs for families with a child with a disability, with a view to identifying a preferred approach that may be implemented across NSW. To guide the review, a set of evaluation benchmarks was developed, based on both national and international literature. The evaluation benchmarks used included best practices in designing positive behavior support programs for families, implementation processes, and outcomes for child and family. 

HACC Unit Cost Benchmarking Project (PDF)

Richard Stock, Australian Healthcare Associates (Jan 2005)
This project provided information to assist with the process of updating and refining the HACC unit costing model by undertaking an extensive survey of HACC providers and service types. This has provided information on cost drivers in the HACC program for the Department and service providers.

Innovative Models of Community Support for People with High and Complex Support Needs

Dr Keith R. McVilly, Centre for Developmental Disability Studies, University of Sydney - kmcvilly@med.usyd.edu.au (Jan 2005)
The project describes 21 different models of support for people with high and complex needs, including specific facilities, services and service systems from other jurisdictions throughout Australia and from overseas. The project synthesizes the features of these models and proposes key elements of a comprehensive, integrated service system.

2004 

Face and affect processing in children with Williams/Down Syndrome

Melanie Porter, Macquarie University - mporter@maccs.mq.edu.au (Dec 2004)
The project investigated face and emotional processing in people with Down Syndrome, Autism and William Syndrome.

Management of Acute Epilepsy

Seeta Durvasula, Centre for Developmental Disability Studies, University of Sydney - seetad@med.usyd.edu.au (Nov 2004)
A literature review on the management of acute epilepsy.

Sudden and Unexplained Death in Epilepsy

Seeta Durvasula, Centre for Developmental Disability Studies, University of Sydney - seetad@med.usyd.edu.au (Nov 2004)
A literature review on sudden and unexplained death in epilepsy.

A review of the research to identify the most effective models of Best Practice in the management of children with Autism Spectrum Disorders (PDF)

Jacqueline Roberts and Greta Ridley, Centre for Developmental Disability Studies, University of Sydney - jmroberts@hotmail.com (Apr 2004)
The project reviewed literature relating to the management and treatment of children with autism with the aim to identify the most effective models of best practice.

Identifying isolated carers: contacting carers with unmet needs for information and support

Michael Bittman, University of NSW - m.bittman@unsw.edu.au (Apr 2004)
Project aimed to identify innovative strategies for identifying carers and their needs and improving their access to information and take-up of appropriate support services. An ARC Linkage Project.

Evaluating diagnostic tools in autism assessments (PDF)

Kerrie Baker, University of Western Sydney - kerrie.baker@bigpond.com (Mar 2004)
The project examined the validity of the Gilliam Autism Rating Scale (GARS) in a sample of 26 children presenting for assessment with and without concerns about autism disorder. The parents' experiences with the assessment and diagnostic process were also surveyed. A comparison of the GARS with gold standard diagnostic research methods was also undertaken.

2003

Coping with occupational stress when nursing in large residential centres

Catherine Adams, University of Newcastle - Catherine.Adams@mater.health.nsw.gov.au (2003)
The study looked at levels of occupational stress in nursing staff (RN, CNS, NUM) and whether personality type and/or coping style influences the level of stress. 

Life satisfaction for children with profound and multiple disabilities

Dr Gordon Lyons, Macquarie University, Sydney - gordon.lyons@mq.edu.au (Dec 2003)
The project investigated the phenomenon of life satisfaction for children with profound multiple disabilities to help improve understanding of how communication partners come to know these children.

Service Pathways for Ageing Parent Caregivers

Gwynnyth Llewellyn, Lindsay Gething, Hal Kending, Rosemary Cant, University of Sydney - http://sydney.edu.au/health_sciences/afdsrc  (May 2003)
Investigated service delivery pathways for ageing parent caregivers.

Supporting families averting out of home placement of children with disabilities

Gwynnyth Llewellyn, University of Sydney - http://sydney.edu.au/health_sciences/afdsrc (Mar 2003)
The project reviewed wellbeing in families that have children with high support needs, identified factors affecting wellbeing and factors predisposing families to seek out of home placements.

Home Maintenance and Modifications Clearinghouse

Faculty of Health Sciences, University of Sydney - hmminfo@fhs.usyd.edu.au
The information clearinghouse gathers, collates, summarises, analyses and disseminates home modification information through the website at plan.arch.usyd.edu.au

2002

Enhancing Interaction in Group Homes for Adults with Disabilities

David Butt and Alison Moore, Centre for Language in Social Life , Macquarie University - amoore@ling.mq.edu.au (2002)
The project explored interpersonal interactions between clients, service workers, carers and children with behaviour support needs living in the inner west area group homes, with the view to enhancing patterns of interaction/communication between household residents and their carers.

A comparative study of program elements and intervention strategies used to maintain children with a disability safely within the family

Eileen Baldry, University of NSW - E.Baldry@unsw.edu.au (Oct 2002)
The project investigated the elements and strategies of the Intensive Family Support Options (IFSO) home-based interventions, with the view to determining effective options for supporting families that have a child with a disability.

2001

Behavioural and family systems interventions in developmental disabilities: towards a contemporary and integrative approach

Paul Rhodes, Department of Psychological Medicine, Children's Hospital, Westmead - paulr2@chw.edu.au (Dec 2001)
The project examined ways of integrating systematic therapy principles with traditional behavioural approaches to strengthen the relationship between behavioural interventions and family therapy. The research laid the foundations for a practical working model to assist the behavioural programmer identify and respond to restraints the family may present to effective behaviour intervention.

Appropriate community services in NSW for offenders with intellectual disabilities and those at risk of offending

Jim Simpson, Meredith Martin, Jenny Green - Meredith@martinassociates.com.au (Jul 2001)
The report provides a framework for provision of appropriate community services for people with intellectual disabilities who are in contact with the criminal or juvenile justice system, or at risk of contact. The project focused on accommodation, case management, behavior intervention and related services.

Evaluation of stress management training for parents of children with developmental disabilities

Elizabeth Connellan, University of Western Sydney - econnellan@hotmail.com (Jun 2001)
The project investigated the effectiveness of stress management training for parents.

2000

A Journey Backwards in Search of the Invisible Survivors: Child Sexual Assault of Women with an Intellectual Disability

Megan Agnew, Macquarie University - megan.agnew@facs.nsw.gov.au (Apr 2000)
This Study was originally designed to conduct a formative needs assessment focusing on the effects of child sexual assault (CSA) on women with an intellectual disability. Difficulties in accessing the women themselves necessitated interviews with five sexual assault workers. Qualitative methods were used to illuminate the participants' subjective experience, perceptions, meanings and knowledge of the needs of this group of women. The dominant theme that emerged from the transcripts was one of barriers. Thus the emphasis of this study was transformed from a focus on the effects of CSA to a focus on the 'barriers' acting to keep this group of CSA survivors silent and inaccessible to both intervention and research. The results identify and explore three dominant and inter-related barriers/themes operating on three levels: 1) Barriers to disclosure (of CSA) and access (to services) for the women themselves (Individual level) . 2) Barriers to recognition, access and action operating at the systems level. 3) Barriers to awareness and action operating at the societal level.

In identifying major barriers, it is hoped that the findings will invite further discussion and exploration from the disability and sexual assault professionals on how 'the barriers' may be broken down.

1999

Long term follow-up of former institution residents

Dr Roger Stancliffe, Centre for Developmental Disability Studies, University of Sydney - rogerst@med.usyd.edu.au (Dec 1999)
The project investigated the long term effects on people with intellectual disabilities who were transferred from institutions to the community.

Parents experience of hospital care for their children with developmental disabilities: a pilot study

Penny Kearney, School of Nursing, Family & Community Health, University of Western Sydney - p.kearney@uws.edu.au (Apr 1999)
The project investigated hospital care experiences for parents of children with developmental disabilities.

1997

Western Sydney Intellectual Disability Support Group Oral History Film Project

Jeanette Moss, Manager Western Sydney Intellectual Disability Support Group at wsidsg@optusnet.com.au (1997)
The project recorded and documented the personal histories of Rydalmere Centre residents that lived in the old Rydalmere Hospital , as well as that of family members associated with the Hospital. The details were presented in a 20 minute film that presented the interplay between history, place and people, and the impact of the transitions on peoples lives. 

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