A Dementia Australia submission to Joint Standing Committee on the NDIS
- The Care Connect Co.
- Sep 14, 2024
- 4 min read
Capability and Culture of the NDIA
Dementia Australia welcomes the opportunity to make a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS). Dementia Australia’s submission to the inquiry into the Capability and Culture of the National Disability Insurance Agency (NDIA) is informed by feedback from people with younger onset dementia, their families and carers, as well as Dementia Australia staff.
This submission primarily focuses on the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants accessing information, support and services from the Agency.
Although it is more common in older people, dementia is not a natural part of ageing and it
affects people in their 40s, 50s and even 30s. The misconception that dementia is a condition of old age contributes to, and exacerbates, multiple challenges experienced by younger people with a diagnosis of dementia. Overall, the experience for people with younger onset dementia – who often receive a diagnosis when they are in full-time employment and actively raising and financially supporting a family – is different from those diagnosed with dementia at a later stage of life. Loss of income, self-esteem and perceived future purpose can pose multiple physical and psychological challenges for people with younger onset dementia and their families.
The Australian Institute of Health and Welfare (AIHW) estimates that around 27,800
Australians had younger onset dementia in 2021 and this number is projected to increase to
39,000 by 2050.
Some people living with younger onset dementia rely on support through the NDIS to enable
them and their families to live well with their diagnosis of dementia. Broadly, people with
younger onset dementia have mixed views of the NDIS; where some describe the benefits
reaped from the NDIS, others have described their experiences to be ‘frustrating, confusing
and distressing’.
Dementia Australia staff and people impacted by younger onset dementia identify
inconsistent dementia awareness amongst NDIA staff, which has impacted the quality of
NDIS plans to meet the specific needs of people with younger onset dementia. There is a
lack of understanding and recognition within the NDIS structure and approach that dementia
is a progressive condition, and this lack of knowledge is apparent in the exclusion of carers
and family engagement during assessments, capacity building supports and creating and
managing plans.
“We have all come across planners who really do not understand the nature of the
various forms of dementia and who have judged our clients on how they presented on
the actual day of their meeting, which of course has resulted in a plan that has been
inadequate for many our clients’ needs.” Dementia Australia staff member.
Support Coordination
One of the main objectives of the NDIS is to build capacity with the aim to reduce the
likelihood of future supports. This is challenging for people living with a degenerative
condition such as younger onset dementia who will require more support over time, not less.
Support coordination is offered as a capacity building support with an eligibility criterion that
the individual is likely to develop the skills and confidence needed to be able to navigate the
NDIS independently. The lack of understanding of dementia as a progressive condition is
reflected in the approach to support coordination as the needs of people with dementia
become more complex over time, risks to their health and welfare increase and, at the same,
time their capacity to make decisions and have input into the processes impacting them
declines.
Informally, we had been advised by the NDIA that people with neurodegenerative conditions
should be allocated to NDIS planners as opposed to Local Area Coordinators (LACs) due to
their complexity. If a person has a planner develop the plan (instead of an LAC), a support
coordinator is typically automatically assigned.
Unfortunately, many LACs seem all to unaware of this protocol and will conduct the assessment themselves, meaning that obtaining a support coordinator becomes a lot more challenging. Support coordination becomes more critical for a person with increasing needs and decreasing capacity to participate and understand NDIS processes. Dementia Australia staff report difficulties for clients if support coordination is not included in a first plan, in seeking for it to be approved in subsequent plans.
‘Overall, I have found NDIA staff quite open and amenable to changes. However, the
LAC had no degree of empathy, and just ‘do their own thing.’ - Person living with
younger onset dementia
Support coordination is highly beneficial for people with younger onset dementia. People with
younger onset dementia who are also supported through the access request process and
pre-planning tend to receive plans that match their needs more closely than clients who do
not have this support. Dementia Australia staff report that some clients without support
coordination do not end up fully optimising the potential of their plan due to lack of
understanding on how to best utilise their funding, e.g., only using their plan for cleaning.
Additionally, the lack of support coordination has an impact on carers, as they end up being
the ones who must set-up and coordinate supports whilst managing medical appointments,
their own schedules, work, or young children which adds excessive stress and impacts their
ability to provide care.
Having an automatic pathway to Support Coordination and planning directly with the NDIA for
those living with a degenerative condition would help ensure people living with dementia are
supported throughout the NDIS process.
Interested in reading the entire article?
Download the Submission Document by clicking the prompt below.
Click HERE to complete our Intake Form
Comments