Younger Onset Dementia Key Worker Program prepares for the future

The Younger Onset Dementia Key Worker Program faces a number of challenges and some great opportunities as the National Disability Insurance Scheme (NDIS) rolls out across more sites from July 1 2016. The primary focus of Younger Onset Dementia Key Workers across Australia during this time is to ensure people with younger onset dementia, their families and carers continue to be supported.

Younger Onset Dementia Key Worker ForumIn preparation for the coming changes, over 40 Younger Onset Dementia Key Workers gathered from across Australia for a National Younger Onset Dementia Key Worker Forum. Held in Sydney on May 26 and 27, the forum provided attendees education and the opportunity to share knowledge and experience.

The Younger Onset Dementia Key Worker Forum opened with presentations from Dementia Australia National CEO, Carol Bennett; James Christian from the Department of Social Services; Kylie Preston from Carers Australia; Peter Andersen, a consumer from the Hunter NDIS Trial site who spoke about their experience with the NDIS and the Younger Onset Dementia Key Worker Program; and a presentation by Jade Maloney from ARTD Consultants on the history of the NDIS. The first session closed with a panel discussion which allowed the Key Workers to ask questions about the future of the program and how they could best prepare for the NDIS.

The remainder of the forum was dedicated to structured workshops which addressed topics such as capacity building and better communicating the impact the Younger Onset Dementia Key Worker Program has on the lives of those with younger onset dementia, their families and carers.

The Younger Onset Dementia Key Workers valued the highly interactive format and enjoyed working collaboratively with a broad range of Key Workers from all states and territories. 

In preparation for the further roll out of the NDIS from July 1 2016, Dementia Australia’s National Office has also made two submissions with regards to the NDIS.

The first was a submission in response to the NDIS Information, Linkages and Capacity Building Commissioning Framework. While there is still only limited information available about the Information, Linkages and Capacity Building (ILC) component of the NDIS, the two broad aims for ILC are:

  1. Making sure people with disability have the skills, confidence and information they need to get involved in the community.
  2. Building the capacity of the community and mainstream services to include people with disability.

ILC funding will be allocated through competitive grants and will roll out across Australia between 2017 and 2019. Dementia Australia used their submission to highlight once again the unique challenges people with younger onset dementia face and again called for the NDIS to consider families and carers as well as those who are in the often difficult process of pursuing a diagnosis as they developed the ILC Commissioning framework.

The second submission was in response to the Review of the National Disability Advocacy Program Discussion Paper. The discussion paper aimed to initiate discussion and generate ideas about what an updated National Disability Advocacy Program (NDAP) should look like and how it should work, in an NDIS environment. Dementia Australia highlighted the advocacy role Younger Onset Dementia Key Workers play in the lives of people with younger onset dementia and their families. Younger Onset Dementia Key Worker Forum

Dementia Australia’s submission illustrated how Younger Onset Dementia Key Workers linked clients to early intervention supports and services and build capacity in families and clients to better enable them to remain independent for as long as possible. Dementia Australia further stated that as the Younger Onset Dementia Key Worker Program transitioned to the NDIS, it was essential that consideration was given to how to continue to provide this important linkage service as mainstream non-disease specific services still did not meet the unique needs of people with younger onset dementia.

Dementia Australia will continue to advocate for people living with younger onset dementia, their families and carers while also working to make sure Key Workers are informed about and engaged with the NDIS as it rolls out to ensure people with younger onset dementia continue to be supported by their Younger Onset Dementia Key Worker.