Submissions contributing to change

Dementia Australia is actively involved in advocating for better care, treatment and support for the more than 413,000 Australians currently living with dementia, their families and carers.

One of the many ways we do this is to ensure the voices of those living with dementia are included in conversations about policy and legislative change that will affect them.

Dementia Australia continues to advocate for consumers impacted by dementia across a broad range of areas, with our activities being necessarily diverse because of the number of contexts within which dementia is relevant: from health to disability and aged care; from home care to residential care; from preventative health to acute care to end of life and palliative care.

The past month has seen a flurry of formal government reviews, with Dementia Australia providing submissions on a number of key issues in addition to being consulted by a range of government and other stakeholders.

Not only do we provide submissions in our own right but we participate in joint submissions as a member of the National Aged Care Alliance – touching on workforce, home care services, integrated consumer supports and quality frameworks. 

Dementia Australia’s recent submissions include comment on various aspects of the National Disability Insurance Scheme:

This included the Productivity Commission review of the costs of the NDIS with Dementia Australia being broadly supportive of the recommendations made by the Commission in relation to planning and support coordination.

However, we did point out, in this and other submissions, that the lack of planning and rush to enlist participants has manifested in the progressive and complex needs of people with neurodegenerative diseases like younger onset dementia being overlooked or insufficiently addressed. 

An example of this is a lack of understanding of the disease that leads to an attempt to conduct planning sessions over the phone despite communication of cognition challenges, or the creation of plans that do not address key support needs.

We therefore welcomed the Commission’s position that a greater emphasis is needed on pre-planning, in depth planning conversations, plan quality reporting, and more specialised training for planners. 

We also supported the Commission’s position that the interface between the NDIS and other disability and mainstream services is also critical for participant outcomes and the financial sustainability of the scheme.

Dementia Australia also supported the Senate Community Affairs Legislative Committee’s review of the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017.

This Bill seeks to amend the National Disability Insurance Scheme Act 2013 to establish the NDIS Quality and Safeguards Commission with functions in relation to: 

  • registration and regulation of National Disability Insurance Scheme (NDIS) providers, including Practice Standards and a Code of Conduct; 
  • compliance monitoring, investigation and enforcement action; 
  • responding to complaints and reportable incidents including abuse and neglect of a person with disability; 
  • national policy setting for the screening of workers; 
  • national oversight and policy in relation to behaviour support and monitoring restrictive practices within the NDIS and
  • information sharing arrangements. 

Dementia Australia position is that it supports the objectives of the NDIS to advance the rights of people with a disability and minimise the risk of harm, while maximising the choice and control over their lives.  

For people with younger onset dementia, these objectives are particularly important given the progressive nature of the condition, which requires responsive individually tailored solutions from service providers that will evolve over time and with the individual’s condition. 

We were encouraged to see that the Quality Framework and Code acknowledge ‘the need to recognise that every person is at a different stage along the way to independent decision making…’. 

The Dementia Australia’s Younger Onset Dementia Key Worker Program (YODKWP) echoes this philosophy to provide specialist services that are designed specifically to meet the needs of people with YOD. 

The YODKWP provides one-to-one support from the point of diagnosis throughout the dementia trajectory and for those in the early stages of diagnosis, in particular, it is critical that this understanding of progressive neurodegenerative disease is built into the system.

Dementia Australia also commented on the Department of Health’s review into the NDIS Code of Conduct – Dementia Australia made four key recommendations:

  1.  Embedding pre-planning support for people with a progressive neurodegenerative disease into the Code;
  2.  Reference to a cohesive, structured and integrated national approach to disability education and training is needed, including minimum standards for education and training for those working with people with dementia;
  3. The Code recognises and removes the inherent conflict of interest that arises from assessment and service delivery roles being provided by the same provider; and, 
  4. The Code be strengthened in order to limit and restrict instances of disability abuse. This should include mandatory Working with Vulnerable People checks across the Scheme, as well as mandatory reporting requirements for serious breaches.  

In regards to residential aged care safety and quality, Dementia Australia participated in the Government’s review into quality of care in residential aged care facilities.  

Dementia Australia made 16 separate recommendations spanning compliance and quality, consumer engagement, data collection, quality indicators; staff qualifications and training, and specialist care services.

Dementia Australia also made a submission to the Australian Human Rights Commission’s Optional Protocol to the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT) Discussion Paper.

Our submission draws on the needs of individuals with dementia in relation to OPCAT and provides comment on two distinct population cohorts: issues relating to people with dementia who are imprisoned; and issues relating to restraints used on people with dementia in the aged care system, particularly in residential aged care facilities

In relation to the latter, Dementia Australia wishes to be clear that we do not define residential aged care services as ‘places of detention’; however, the current reviews of aged care quality regulatory processes highlights the fact that there are still some instances of inappropriate restraints being used in a residential aged care setting. It is in this context that we offered our comments.