Dementia Australia has expressed concern over the Federal Government’s decision not to support a Senate inquiry recommendation to expand the younger onset dementia key worker program and says the program’s future under the National Disability Insurance Scheme is uncertain.
The Commonwealth tabled its response to the community affairs inquiry into dementia care last week, three years and eight months after the final report was handed to government.
The senate committee recommended increasing funding to the program, which has been running since 2013, to include all people living with dementia as part of its 18 recommendations.
However, the government cited the program’s transition to the NDIS, low access rates and “performance statistics” as reasons not to support an expansion of the key worker model.
“Although initial reports suggest that the program has resulted in some good outcomes so far, it would be inappropriate to expand the program based on preliminary findings without the analysis of longer term, more meaningful data,” the government said in its response.
Commonwealth funding to Dementia Australia to deliver the program ends in June next year.
A national network of 40 key workers has been employed under the program.
An initial evaluation conducted by the University of Wollongong between late 2013 and 2016 found the program supported nearly 3,500 clients, including 1,500 people living with younger onset dementia and 2,000 carers and family members.
The program aims to improve the coordination of services for people with younger onset dementia by providing support, counselling and advice to consumers, carers and families and by building capacity within service sectors to meet their specific needs.
Dementia Australia said it was disappointed by the government’s position and concerned about the continuation of care navigation services under the NDIS.
“The key workers represent a highly skilled health workforce and include nurses, social workers, physiotherapists, psychologists, occupational therapists, and diversional therapists,” said Dementia Australia CEO Maree McCabe.
“This multidisciplinary team adds value to client support and strategies developed due to their broad range of knowledge, skills and experience. This approach will not be replicated under the NDIS.”
Dementia Australia called for the key worker program to be funded until 2020 to give the NDIS service market time to respond to the needs of people with younger onset dementia. It said the program should also be expanded from 40 to 55 key workers.
Dementia Australia’s executive director of client services, Susan McCarthy, said the organisation had a wait list for consumers wanting to access the program and clients strongly valued the navigation support provided by the key workers.
The staged rollout of the NDIS in some states meant there would continue to be gaps in support to people under 65 from July next year, she told Community Care Review.
Ms McCarthy said key workers were currently helping people with younger onset dementia in the trial sites to apply for the NDIS and prepare for planning meetings and this individual advocacy and navigation support was not funded through the NDIS.
“There is still a lot more work to do to ensure the disability, health and aged care service sectors understand younger onset dementia and accommodate the needs of clients appropriately.”
She said the program has helped to increase the awareness of the condition among health professionals and supported the development of tailored services to this group.
It is estimated that over 25,000 Australians under the age of 65 have younger onset dementia.
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