Who’s at risk of

missing out in the user choice reforms?

User Choices Reforms

Introduction

Australian Red Cross is committed to improving the wellbeing of those who experience extreme vulnerability in our community. We recognise that many people are excluded from the opportunities that others enjoy.

Major social reform in the aged care and disability sectors is being implemented in Australia through the implementation of the National Disability Insurance Scheme (NDIS) and the ‘Living Longer, Living Better’ aged care reforms. The review showed that there are two main areas of concern about who might be at risk of missing out: i. That the system and structures themselves can create barriers to entry ii. That demographic and social factors mean some people are less likely to have the capabilities needed to use the system.

These reforms aim to increase people’s access to support, and provide them with greater choice and control over services. Enabling people to have choice about their supports and services is a progressive approach and is broadly welcomed by both sectors. However, the success of the reforms is based on an assumption that all consumers have equal capacity to exercise choice and control - a key challenge is how to ensure that the reforms work for everyone.

To understand who is most at risk of missing out as these reforms roll out, Australian Red Cross commissioned researchers from the University of Adelaide’s Centre for Housing Urban and Regional Planning to review how the reforms might impact people experiencing extreme vulnerability.

The case studies of Red Cross clients Demi, Sam and Keith in this report demonstrate the real-life decisions and challenges faced by people looking for support through the user choice reforms. This includes challenges faced by people at the intersection of aged care and disability reforms, people with psychosocial disability, people who have multiple and complex support needs and those living in regional and remote areas.

A key challenge is how to ensure that all people do, in fact, have meaningful choice and control. The full review demonstrates who is at risk of missing out in user choice reforms and why. While there are a range of challenges to address, none of these are insurmountable. Knowing this, we are compelled to do everything we can to help make sure that these once-in-a-lifetime reforms can be made to work for all Australians, especially those who are most vulnerable.

Red Cross has invested in this research to understand more about who is most at risk. We want to work with governments, businesses, philanthropists and people who are affected on solutions, so that we have aged care and disability service systems that work for everyone. The review found that, without safeguards, people who are already the most vulnerable are at the greatest risk of being left out. They are the least likely to have the skills and knowledge to advocate for what they need or to be able to navigate new processes and systems. Many of these people live outside major cities, are from already marginalised groups, and many have complex medical and social problems.

Judy Slatyer – CEO Australian Red Cross

User Choice Reforms

Systemic barriers

to entry and use. The way that both the aged care reforms and the NDIS work can make it hard for some people to get the help they need. The main systemic concerns that were noted in the review are outlined below.

Accessing information about the reforms

Thin markets Putting major reforms in place within already complex systems has required large scale, rapid change. The ability to easily access and understand the reforms is critical for people to be able to get the help they need. This is particularly important given many of the people who need services are also most likely to find it challenging to understand new and complex processes.

The place of advocacy Advocacy is important in making sure the voices of people who are ageing or living with disability are being heard as new systems roll out. For marginalised groups in user choice markets, individual advocacy is valuable in supporting people to understand their rights and entitlements and to navigate systems, especially with people who find it hard to manage complex issues and systems.

Support is also needed to ensure consumers achieve the goals they are working towards, and raise issues and concerns about whether the system and its processes are suitable, effective and efficient. The availability of appropriate, personalised and timely advocacy in both reforms remains uncertain.

Data and outcomes

An important finding of the review of Australian and international literature is that there is little evidence about the effect of user choice systems in achieving measureable, positive outcomes. This gap in outcome measurement is apparent across both systems. Without a clear evidence base to measure the effectiveness of the reforms generally, the ability to understand the limitations of the system and its impact on vulnerable people will be compromised.

CASE STUDY

Submission 67 - Attachment 1

User Choice Reforms | 7

Isolated with psychosocial disability

Groups at risk of missing out

Demi* is a 60-year-old woman living with formally diagnosed depression and anxiety.

Currently her PHaMS support worker visits Demi in her home and this is her only access to mental health services locally. This helps Demi to cope in between her appointments with the mental health nurse.

As a young girl, Demi was taken from her parents’ home and placed in a state run children’s home. Later in life Demi experienced domestic violence where threats of burning down or blowing up the house were frequent and Demi’s actions and whereabouts were closely monitored by her ex-partner.

As a result of her experiences in the state run residential facility and with her ex-partner, Demi struggles to engage with and trust new people. She also finds it difficult to communicate and assert herself, and at times finds it hard to leave her house.

Demi has a limited social support network and is socially isolated and lonely.

Demi lives alone in a small town that does not have a mental health service and she does not drive. She relies on a public bus and car service to take her to a town 43 km away so she can access her GP and mental health nurse as part of her current Mental Health Plan. The mental health nurse is often so busy that Demi cannot see her for up to six weeks.

The second area of concern is the demographic and social factors that mean that people from highly marginalised groups are less likely to have the capabilities needed to ensure the user choice reforms work for them.

It is clear that for people who experience overlapping layers of disadvantage, the chances of exclusion from the reforms are highest. For example, for someone not living in a major city, has low literacy, is experiencing family violence and managing on a low income, the chances of getting the right support through the reforms are reduced.

The evidence shows that system and demographic factors combine to create challenges for some people to have their needs met through user choice reforms.

Demi is often overwhelmed by her depression, anxiety, and loneliness. She is not well equipped to take a proactive consumer role to understand what she is eligible for and how to access it under the user choice reforms, let alone being able to strongly self-advocate.

Demi is unlikely to be eligible for an NDIS individualised funding package on the basis that her psychosocial disability is episodic in nature. Funding for the service that Demi currently receives will be withdrawn as the NDIS is implemented and Demi can not afford to pay for a similar service even if it were available.

Demi is also approaching the cut-off age for NDIS and she may have to access assistance through the aged care system. Given her limited social supports, she is likely to have difficulty understanding how to navigate this system and to negotiate effective supports for her mental wellbeing.

LOW CULTURE INCOME NEEDS GEOGRAPHY COMPLEX ? ?

Submission 67 - Attachment 1

CASE STUDY

8 | User Choice Reforms User Choice Reforms | 9

Groups at risk of missing out

Multiple challenges

In the Australian community, many people face exclusion and disadvantage. It is not surprising that many of them are at risk of missing out in the user choice reforms, thus creating further divisions thus creating further divisions between those who have support and those who do not.

They include:

• People who are financially and socially disadvantaged
• People living in rural or remote areas
• People who are homeless, of homelessness, or who are at risk of homelessness
• People with specific cultural needs
• People leaving care
• People with limited system literacy
• People with limited decision making and problem solving capacity
• People with complex medical and/or behavioural needs
• People in contact with the criminal justice system
• People resistant to receiving social support
• People with mental health concerns
• People at the age intersection of NDIS and aged care
• People who are carers

Sam* is an Aboriginal man in his late twenties who lives in regional Queensland. His current service has been instrumental in helping him to secure housing and manage his gambling and substance use problems, as well as supporting his recovery from mental health issues. Without ongoing supports in place, Sam has self-identified that he will be highly vulnerable to returning to his past ‘at risk’ lifestyle, recidivism and re-imprisonment.

Sam had a difficult upbringing, with his mother leaving the family when he was five. In childhood Sam was often left home alone for long periods or was exposed to gambling, spending days in gaming rooms as his father (who was a problem gambler) played the pokies. Sam attended school sporadically, leaving school altogether when he was 12.

Sam has struggled with drug and alcohol issues for most of his life and developed a chronic gambling habit during his teenage years, leading to a conviction and custodial sentence for robbery with violence (undertaken to pay for his gambling habit). While in prison he was diagnosed with bipolar disorder, anxiety and depression. After his release from prison Sam was homeless, couch surfing and living on the streets. He continues to experience housing insecurity.

Sam is unlikely to be eligible for an NDIS individualised funding package because his psychosocial disability is episodic and fluctuating in nature. Sam is focused on recovery and moving forward positively with his life.

Sam faces considerable barriers to engaging with services in a user choice system, including ongoing experiences of stigma and discrimination from service providers. His experience is influenced by being a young Aboriginal man who has spent time in prison, having mental health conditions and experiencing ongoing challenges with multiple addictions, being at risk of homelessness and having limited financial means.

*Cross.ProtectingFor thisthereason,privacystockof peopleimagesinhaveour programsbeen usedisandof utmostnames importancehave been changed.to Red

CASE STUDY

Submission 67 - Attachment 1

User Choice Reforms | 10

User Choice Reforms | 11

Intersection of aged care and NDIS Where to from here?

Keith* is a 67-year-old man who lives with bipolar disorder and severe depression. Keith has had regular periods of living on the streets and is at high risk of homelessness. He has a low level of literacy and is easily overwhelmed by appointments and also has physical health problems including arthritis, continence issues and is overweight.

He is very worried about any transition from his current community-based support. He has been told that he will not be eligible for mental health support through the NDIS because of his age and that he will need to access aged care services to meet his ongoing support needs. However he doesn’t think he needs to access aged care services at his age and he says that if he needs to he will live on the streets.

Since the initial review of the literature, a number of reports and reviews have been released, many of which aim to address concerns identified in the review. These include multiple reviews undertaken by the Joint Standing Committee on the National Disability Insurance Scheme; strategies released by the National Disability Insurance Agency including the Aboriginal and Torres Strait Islander Engagement Strategy, the Rural and Remote Strategy, the Information, Linkages and Capacity Building Commissioning Framework and the NDIS Quality and Safety Framework; the Productivity Commission’s report of Government Services and NDIS Costs position paper; and the Draft Fifth National Mental Health Plan.

A number of research reports have also been released including ‘How to get the NDIS on track from National Disability Services’1 and ‘Choice, control and the NDIS – Service users’ perspectives on having choice and control in the new National Disability Insurance Scheme’2 from the Melbourne Social Equity Institute, University of Melbourne.

Keith has a history of trauma dating back to his early childhood and is mistrustful of others. As a result of his mental health concerns and deep mistrust of others, Keith is currently refused access to various local services, and his lack of insight means that he is likely to repeat his past actions of refusing referral or to agree initially and then subsequently turn away service providers.

He often feels lonely and unsafe at home and requires regular support to retain his accommodation; on one occasion when he forgot to take his medication he cancelled his recent housing lease and gave away all of his household goods.

Without appropriate support Keith is likely to become homeless and his physical and mental health are also likely to deteriorate greatly.

As a consumer, Keith’s need for support is significant but his capacity to make and manage choices about the supports he receives is extremely limited. In a user choice service system, Keith is unlikely to be able to exercise choice and control over the services he receives without considerable support and assistance from a trusted advocate.

Further, his support needs are diverse and go beyond the aged care service system (including housing, health and mental health). Without appropriate support Keith is likely to become homeless and his physical and mental health are likely to deteriorate.

These developments demonstrate the progression of the reforms and growing knowledge and understanding about how to ensure implementation is successful. The pace of change is rapid and, at times, confusing. It is critical that we ensure these reforms include all people and that everyone has the same choices and opportunities. Red Cross is committed to working collaboratively with government, sector partners and others to tackle this challenge so that the reforms can work for all Australians.

If you want to know more about this work, please contact servicedevelopment@redcross.org.au.

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August 2017

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