NDIA Accountability Project

Support for people with Younger Onset Dementia and safeguards within the NDIS

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Submission to the Senate

Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill

July 2017

EXECUTIVE SUMMARY

Alzheimer’s Australia welcomes the opportunity to provide a submission to the Inquiry into 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.

Our submission responds to this Inquiry and draws on the needs of individuals with Younger Onset Dementia (YOD) in relation to the proposed new Quality and Safegards Commission (the Commission) as well as the new Practice Standards and Code of Conduct (the Code). It also provides general comment on the importance of good monitoring and implementation processes in determining the Commission’s work plan as well as the Code.

Alzheimer’s Australia is the peak body providing support and advocacy for people with dementia, their families and carers in Australia. Dementia is the second leading cause of death in Australia and will have an increasing impact on the health system due to population ageing. Currently there are over 25,000 Australians with dementia who are under the age of 65. This number is expected to increase to over 42,000 by 2056.1

It is paramount that NDIS clients receive high quality services and are protected by appropriate, effective safeguards. Alzheimer’s Australia 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 YOD, 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.

Overall, Alzheimer’s Australia is 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 Alzheimer’s 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.

Alzheimer’s Australia has provided submissions to the NDIS Code of Conduct ,2 NDIS Quality and Safeguarding Framework;3 the Senate Inquiry into the Adequacy of Existing Care Arrangements Available for Young people with Severe, Physical, Mental or Intellectual

Disabilities in Australia; its 2015-16 Federal Budget Submission; the NDIS: Information,

Linkages and Capacity Building Policy Framework consultation; and the Inquiry into the delivery of outcomes under the National Disability Strategy 2010-2020 to build inclusive and accessible communities. In these documents we highlight the importance of appropriate and timely community supports for people with YOD and the barriers that prevent the NDIS from currently achieving this.

As at July 2017, the YODKWP is expected to transition to the NDIS in eligible regions by 30 June 2018; however, our current experience of ongoing transition activities highlight that there are several areas of concern that need to be addressed before the transition can be successfully completed. We take this opportunity to reiterate this point given that, under the anticipated transition, many of the clients of the YODKWP will face challenges in accessing appropriate services.

In this submission, Alzheimer’s Australia includes comment areas which should be considered in light of the establishment of the new Commission and makes the following recommendations:

  • Recommendation 1: Embedding pre-planning support for people with a progressive neurodegenerative disease into the Bill.

  • Recommendation 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.

  • Recommendation 3: The legislation recognises and removes the inherent conflict of interest that arises from assessment and service delivery roles being provided by the same provider.

  • Recommendation 4: The Act be strengthened in order to limit and restrict instances of disability abuse. This should include mandatory, nationally consistent Working with Vulnerable People checks across the Scheme, as well as mandatory reporting requirements for serious breaches.

BACKGROUND: DEMENTIA IN AUSTRALIA

Dementia is a complex chronic condition caused by one or more of a large number of illnesses affecting the brain. It is a terminal condition that affects people’s abilities and memories. 8 It is surrounded by stigma and misunderstanding, 9 isolates people living with dementia, their families and carers from social networks, 10 and carries significant social and economic consequences. 11

The care and support of people living with dementia is one of the largest healthcare challenges facing Australia. It is estimated that there are now more than 410,000 Australians living with dementia and nearly 300,000 people involved in their care; by 2056 there will be over a million people living with dementia. 12 Younger onset dementia develops before the age of 65, even as young as 35 years of age, and currently, there is an estimated 25,938 people with younger onset dementia in Australia, which is expected to rise to 29,375 people by 2025 and 42,252 people by 2056. 13

A common misconception is that people diagnosed with dementia are older and live in residential aged care. The reality is that around 70% of people with dementia are living in the community at the time of diagnosis and they may be receiving services through the National Disability Insurance Scheme rather than through the aged care system. 14 Statistics also reveal that dementia is the single greatest cause of disability in older Australians (aged 65 years or older) and the fourth leading cause of disability burden overall. 15

Dementia also has a profound social impact. People with dementia experience stigma and social isolation, 16 and family carers often find it difficult to balance work, life and caring responsibilities. 17

Many of us will be diagnosed with dementia over the years ahead, or have people we care about faced with a diagnosis. Some of us will be younger than 65 when we develop symptoms or receive a diagnosis, so it is vital that the NDIS Act encompasses the needs of people living with younger onset dementia and addresses such themes as decision making support for people living with neurodegenerative disorders, accessibility, and service quality.

NDIS and People with Dementia

The Code of Conduct is a key component of the NDIS Quality & Safeguarding Framework, which seeks to outline the expectations for people delivering NDIS supports and services. It will be an integral element of the work of the new Commission as it is anticipated that it will

apply to all providers and workers doing work that is funded under the NDIS, including

registered and unregistered NDIS providers, services and workers providing NDIS funded supports or services. The development of the Code of Conduct thus provides us with another opportunity to revisit some of the barriers people living with dementia face through the NDIS, and address them through building awareness of neurodegenerative diseases and people with complex needs into the Act.

Alzheimer’s Australia believes that the NDIS will transform the lives of people living with progressive neurodegenerative diseases and has promoted and supported the Scheme since its inception. To date, some NDIS participants have received plans that have had positive, life-changing impacts on their lives; however, many others have received insufficient plans that will adversely affect their quality of life and place some at risk of avoidable hospitalisation.

When the NDIS operates as it was originally intended, and participants have the opportunity to exercise ‘choice and control’ by actively participating in the development of their first NDIS plan, the plan outcomes generally have been positive. However, when the progressive and complex needs of people with neurodegenerative diseases like YOD have been overlooked due to lack of understanding of these diseases (for example, conducting planning sessions over the phone despite communication or cognition challenges, or creating plans that do not address key support needs), the outcomes have been overwhelmingly poor.

People with a progressive neurological disease like YOD can run counter to the ‘traditional’ trajectory of someone on the NDIS: that is, an ability to enhance independence and re-ablement through a more effective engagement of services. For someone with a neurodegenerative disease, however, care needs will inevitably increase over time, no matter how effective early interventions are. NDIS service planning and delivery for this cohort need to acknowledge this and balance independent goal setting with advance care planning. Individuals with neurological diseases should also have pre-planning education and support to assist them as they consider future needs that go beyond the first year of their plan.

Consideration of YOD and anticipated progression should also be factored into planning meetings. People with cognitive or communication impairment require patience and understanding, limited distractions, clear speech, eye contact and non-verbal indicators which are difficult to achieve over the phone. Therefore, when NDIS planning sessions are conducted solely over the phone, many of which, our consumers tell us, have been conducted solely with the person’s carer without the participant present (or the reverse), the plan outcomes are less than optimal and the participant (and their supporter) is deprived of choice and control.

The Hon. Lisa Chester MP, representative of Bendigo – an NDS trial site – noted during her second reading speech: “However, for….. people who have more complex disability issues…. The experience with NDIS has not been the same. My office now has somebody working on this full-time to support people in their advocacy with our local NDIA office to ensure they get a fair package and their package is being spent in their best interests.” This type of support needs to be embedded in the legislation to ensure equity of access for all participants, regardless of their location.

Dementia Specialist Decision Making Support

People with a progressive neurodegenerative disease must consider a number of elements when preparing for NDIS plans. For many, they have only recently been diagnosed and are not yet completely aware of how the disease will progress and how their needs will change. It is essential that individuals have a clear understanding of their anticipated future needs

Dementia Specialist Education and Training for all providers.

To ensure quality dementia care, health care professionals, care staff and mainstream services that provide NDIS-funded supports to people with dementia must be educated and trained in key aspects of dementia care including: person-centred care; the fundamentals of caring for people with dementia; psychosocial approaches to addressing unmet needs; pain assessment and management (particularly as people with dementia may be unable to verbalise their needs); safe behaviour management practices and appropriate end-of-life care.

The Commissioner should also ensure that learning pathways are mandated for care staff to develop knowledge, skills and emotional intelligence, from basic level to advanced practice level, through modules of the NDIS Practice Standards. In the development of these modules it will be imperative for the Commissioner to leverage the existing industry expertise on the needs of people with progressive neurodegenerative diseases.

These organisations, as well as all NDIS funded service providers, have a shared responsibility to develop and fund education and career pathways for the disability workforce. Government must maintain a commitment to supporting ongoing education and

training to develop and sustain a workforce skilled in dementia care in disability, and

employers must also be committed and contribute to education and training.

The move to a market model of service delivery also points to the potential need for significant additional training requirements for registered providers, who will no-longer receive block-funding to cover these types of costs. There is a need to ensure relevant training is funded under ILC (or similar) to embed changes within the sector.

Education and training programs must also respond to the evolving characteristics of the workforce, including targeted education and training for the increasing proportion of the workforce which comes from culturally and linguistically diverse backgrounds.

Further, there is a need to ensure an outcomes focus to the provision of all education and training, and more so for dementia in particular. Lessons should be learnt from aged care, where currently education and training is essentially provided on the presumption that simply undertaking an activity or using a particular resource results in practice change; little review or analysis is given to whether this actually occurs. Practice change requires more than simply creating an awareness of knowledge; measures are needed to translate this to practice. This will be particularly relevant in the development of the Behaviour Support Function of the Commissioner.

Dementia training should be linked to clear levels of competency and/or practice standards, such that the learning outcomes of all dementia education and training activities may be aligned with the competencies/practice standards. Ideally, the outcomes of each education and training activity would be assessed using a framework to ensure that they achieve the intended outcomes and lead to practice change, and these Practice Standards become requirements for service providers to attain and retain registration to deliver NDIS services to people with complex needs.

Recommendation 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.

Removing Conflict of Interest between roles: Separating Assessment from Service Provision

Coordinators of Support play a vital role in negotiating support costs with providers, making arrangements for support delivery and providing information and ongoing support to providers regarding the specific needs of people with a neurodegenerative disease. These supports are therefore vital inclusion in the plans of people with dementia accessing the NDIS.

People with progressive neurodegenerative diseases like younger onset dementia, and their families and carers, are caught between a changing disability sector and aged care sector and there are limited options available to them within the marketplace. Without the support and advocacy of a Coordinator of Supports who understand a client’s disease and journey, such as the YODKWP, many people with a progressive neurodegenerative disease may fall through the cracks and be unable to access appropriate services.

As Ms Brodtmann MP noted during the readings: “They did not have the energy to choose what services and support they needed. They were just exhausted. This is why it is so important that we provide the supports and services to those parents, particularly the carers, who do feel overwhelmed by the NDIS.”

Coordination of Supports

It is important to note that coordination of supports is a specialist skill, which helps NDIS clients navigate a complex service delivery environment by understanding their unique needs.

It is inappropriate, and in fact a clear conflict of interest, to have roles such as an LAC assess an individual’s needs for support co-ordination or support connection, and then provide the service themselves. This is becoming a frequent occurrence that can be observed across Australia, across which the NDIS have moved to a model where LACs are also undertaking the support coordination/connection role. This means that, in some instances, people with YOD are having support coordination/connection included in their plans, but the LACs are providing the service.

As we have noted earlier, LACs have limited to no knowledge of complex neurodegenerative conditions like YOD, which is inadequate from the perspective of needs assessment, but even more inadequate when it come to the provision of a specialist service such as co- ordination of supports for a person living with dementia.

There needs to be a separation of roles and independent planning to maximise the personal choice and safeguard from conflict of interests.

Recommendation 3:

That the legislation recognises and removes the inherent conflict of interest that arises from assessment and service delivery roles being provided by the same provider.

Strengthening Act to limit and restrict disability abuse

Younger people with dementia and their family carers are often reluctant to access services because of the fear of the person with dementia ‘not fitting’ traditional disability care services. This perception can negatively impact family carers due to the increased guilt they may experience when they have to access services they believe are not adequately meeting the needs of their family member. For example, carers have conveyed to us their concerns about the lack of engaging and enjoyable activities in many community based services.

Over the past several years, people living with dementia have shared their experiences with us of poor quality care and the frustrations they have experienced in attempting to navigate a highly complex system that at times affords little transparency. These stories have ranged from the mismanagement of the behavioural and psychological symptoms of dementia (BPSD); chemical and physical restraint; care recipients being treated with a lack of dignity and respect; and psychological, physical and sexual abuse.

The stories shared by some of our consumers paint a disturbing picture of a care system under strain which is, in some cases, failing to meet the basic human rights of our most vulnerable citizens. This risk is due to a host of factors including cognitive impairment, depression, immobility, limited support and contact with the outside world and difficulties in accessing the appropriate channels through which to raise complaints, as well as fear of victimisation for doing so.

With the establishment of the NDIS Safety and Quality Commission and the development of NDIS Practice Standards there are significant protections in place to assist in ensuring a minimum quality of care is provided to consumers through the NDIS. However, there is a need for further provisions in the Code to protect people living with dementia. There is a need for the Working with Vulnerable People check process to operate nationally, so that the scheme, and service providers operating under it, can also track workers who breach the Code in a significant manner, or are reported to, or barred by, the Commissioner.

In addition, self-regulation of unregistered providers could be problematic as there are no formal reporting requirements and no harsh penalties such as de-registrations for violations either. In terms of accountability, Alzheimer’s Australia considers that industry self-regulation of a complaints mechanism can be quite ineffective. This approach, which has been adopted by the prescription and complementary medicines industries in Australia for example, shows that it is a system that does not provide optimal protection for the consumer. Upholding the principle of accountability in the Code should result in a complaints mechanism that is independent of influence from the industry sector over which it has oversight, mitigating any actual or perceived conflict of interest in the complaints process. The introduction of third-party quality assurance certifications, as outlined in the Statement of Options, would address this need and increase consumer ability and confidence in their choice of service provider. Mandatory reporting requirements should be established for serious breaches to ensure that the most harmful breaches are addressed by the appropriate authorities in a timely manner. Reporting requirements also need to be bolstered by requisite penalties for failure to report in these situations. These are particularly important for the following points under the Code:

  • Actively prevent all forms of violence, exploitation, neglect and abuse.

  • Raise and act on concerns about matters that may impact on the quality and safety of supports provided to people with disability.

  • Not engage in sexual misconduct.

Recommendation 4: The Act be strengthened in order to limit and restrict instances of disability abuse. This should include mandatory, nationally-consistent Working with Vulnerable People checks across the Scheme, as well as mandatory reporting requirements for serious breaches.

ABOUT ALZHEIMER’S AUSTRALIA

Alzheimer’s Australia is the peak body providing support and advocacy for people with dementia and their families and carers in Australia. Dementia is the second leading cause of death in Australia, and there is no cure.

Alzheimer’s Australia represents and supports the more than 410,000 Australians living with dementia, and the more than one million family members and others involved in their care. Our organisation advocates for the needs of people living with all types of dementia, and for their families and carers; and provides support services, education, and information.

Alzheimer’s Australia is a member of Alzheimer’s Disease International, the umbrella organisation of Alzheimer’s associations across the world.

Our organisation advocates on the basis of evidence-based policy, promotes awareness of dementia, delivers national projects and programs under contract from the Commonwealth, and provides research grants to emerging researchers. We are committed to a strong consumer focus and have a number of consumer advisory mechanisms, which actively seek and represent the voice of people with dementia themselves, as well as carers. We participate on many Ministerial and Departmental Committees, and contribute to consultation forums and advisory groups. We are also involved with key groups progressing aged care reforms including the Aged Care Sector Committee and the Aged Care Quality Advisory Council.

We are committed to achieving a dementia-friendly Australia where people with dementia are respected, supported, empowered, and engaged in community life.