Report targets needs of children with disabilities in the Illawarra

May 23, 2007

The Centre for Social Marketing Research at the University of Wollongong has released the first comprehensive report into the current and future needs of children with disabilities in the Illawarra.

Working in partnership with the Disability Trust, the Centre surveyed 180 parents and carers of children with disabilities about a variety of issues related to the care of their children.

The report was officially handed over to the Disability Trust in Fairy Meadow today (Wednesday 23 May).

“This report hears the ‘voices’ of parents and carers of children with disabilities in the Illawarra and provides insights into areas of concern for this group within our community,” according to the Director of the Centre for Social Marketing Research, Dr Gary Noble.

“The report indicates that there are high levels of stress, anxiety and family tension within this group. It also suggests that within this group there is frustration that their plight is not recognised or being addressed by the relevant government agencies or service providers in a timely manner,” Dr Noble said.

The report has found that there are three major areas of concern in need of urgent attention by government and community organisations:

• The issue of government funding. Specifically the funding “crisis” is having a heavy impact in the areas of 1) respite care with many parents suffering from “burn out”; 2) access to speech therapy and other early intervention programs; and 3) the provision of invaluable equipment such as wheelchairs. [In many cases in this report access to this type of equipment was denied for up to 12 months].

• A lack of well resourced case managers. Many families surveyed received little or no ongoing support and follow up. For the majority there is frustration at having to negotiate the service system themselves and continually fight for the type and level of service their child needs. There is a clear need for an expansion of funded case managers who can maintain an ongoing and flexible relationship with each family.

• A lack of centralised information source. Many parents and carers of children with disabilities in the Illawarra are not fully aware of all services available to them. They also have significant information needs such as in areas of different disability classes, eligibility criteria and application for government assistance processes. There is an urgent need for a co-ordinated and up-to-date information system that could assist parents and carers.

Dr Noble said the report concluded by suggesting an urgent review of government funding and non-profit service provider activity in the identified areas of concern. He said the NSW Government has proposed increases in funding levels under its ‘Stronger Together’ plan and it should be noted that this study was undertaken before that announcement.

“It remains unclear what impact this new funding arrangement will have on unmet demand within the region. It is hoped that the report will inform planning around regional needs and the delivery of associated funding and resources to this section of the community,” Dr Noble said.