Services for Children with Disabilities in the Illawarra: An Assessment of Current and Future Needs

Project Leader: Dr Gary Noble, Director, Centre for Social Marketing Research, Faculty of Commerce, University of Wollongong

Project Description

Community issue being addressed and University goals

Most children living with disabilities are cared for by family members within their own homes. Care services provide a crucial support system for these families, yet their opinions are often ignored.

The Disability Trust wanted to conduct a comprehensive survey to understand the current and future needs of Illawarra families who care for a child with a disability, bud had insufficient funds and resources.

This project was funded through UOW’s Community Engagement Grants Scheme (CEGS). This scheme is intended to assist UOW to achieve its goal of ‘community collaboration and service’.

Activity Description (sequence of actions)

The Disability Trust (TDT) found that successfully applying for government funding to support the families of disabled children increasingly difficult as it was unable to support applications with empirical data. Funding agencies were increasingly requiring such data be made available before approving applications. Due to limited funding, the TDT was unable to withdraw resources from its operational activities.

UOW’s Office of Community & Partnerships put the TDT in contact with researchers within the Centre for Social Marketing Research (CSMR) in the Faculty of Commerce. The research team then made application through the University’s Community Engagement Grants Scheme in mid 2005.

The project was awarded a grant of $6,400 and received UOW Research Ethics Committee approval. Initial focus groups were conducted with representatives of 20 families from around the region. The second stage involved the development of a questionnaire over a six month period, with consultation from many service providers and professionals in the local community. Approximately 700 surveys forms were distributed with 181 returned (26% response rate). Results and findings were then analysed and distributed to the relevant stakeholders for feedback. A final Report with recommendations was released in May 2007 and received good local media attention.

Governance/Management Structures

The research team was comprised of three academic staff from the CSMR and three staff from TDT. 

Constituencies Served

Families of children with a disability, aged 0-12 years living in the Illawarra region and 11 disability and related service providers.

Expectations/Benefits of project

To Community

A comprehensive survey of users and non-users of disability services in the Illawarra to determine their current and anticipated service needs and the level of awareness of disability services available in the Illawarra.

The project findings will assist in planning for better services that will lead to equal opportunity and social justice for disabled children and an improvement in the quality of life for both these children and their families.

To the University

The University researchers will benefit from the experience of working on an action-oriented, community-based research project where their skills and knowledge can be applied to achieve worthwhile community outcomes.

This project helps the University achieve its commitment to “community collaboration and service” and to understanding the needs of its communities and to engaging these communities in the life of the University. The University gains by building strong community partnerships which enhance its reputation and support its development.

Responsibility/Roles of each partner

The University brought financial support, research skills and experience to the project. Extensive communication with disability support groups and their members was required to conduct the survey and achieve the desired response rate.

The Disability Trust provided in-kind support (approx.70 hours of staff time) and importantly, knowledge of and contacts within the sector. TDT staff acted as advisers and were consulted in important areas such as the development and refinement of the interview questions/protocol. They also acted as facilitators in the conduct of both the focus group sessions and the survey.

Results

Evaluation Plan/Strategy

Services for Children with Disabilities in the Illawarra: An Assessment of Current and Future Needs Report released May 2007.

This report provided a “voice” for the parents and carers of disabled children in the Illawarra and provided insights into areas of concern for this group within the community. The Report found that there are high levels of stress, anxiety and family tension within this group and frustration that their plight is not recognised or being addressed by the relevant government agencies or service providers in a timely manner. The Report identified two key issues of concern:

• a lack of accessible and quality information about all the services available; and
• a lack of adequate funding with impact in four areas - respite care, speech therapy and early intervention programs, provision of equipment like wheelchairs and case management services.

For each identified problem area, the report identified possible solutions and made recommendations for action by Government and community organisations. 

All of the disability services expressed an interest in extending this research into children aged (13 – 18 years) and then possibly into young adults (19 – 25 years).

The development of an Illawarra Database which captures all the service providers and families will assist in easier communication in the future.

Note: All Community Engagement Grant Scheme funded projects are required to submit an Outcomes and Evaluation Report at the conclusion of the project. This report is submitted to the University’s Community Engagement Committee.