User Choice Reforms | 1
Who’s at risk of missing out in the user choice reforms?
2 | User Choices Reforms User Choices Reforms | 3
Introduction Overview
Australian Red Cross is committed to improving the wellbeing of those Major social reform in the aged care and The review showed that there are two main areas of
concern about who might be at risk of missing out inexperiencing extreme vulnerability in our community. We recognise that many disability sectors is being implemented in user choice reforms and why: people are excluded from the opportunities that others enjoy. Australia through the implementation of the
i. that the system and structures themselves can create National Disability Insurance Scheme (NDIS) barriers to entry
and the ‘Living Longer, Living Better’ aged ii. that demographic and social factors mean some
Major social reforms are being We share the stories of three resilient Red care reforms. people are less likely to have the capabilities neededimplemented across Australia’s aged Cross clients who may face barriers to to use the system.care and disability sectors, which aim to accessing the supports they need to live
increase people’s access to support, and happy and healthy lives under the reforms. These reforms aim to increase people’s access to The case studies of Red Cross clients Demi, Samprovide greater choice and control. Their stories emphasise the responsibility support, and provide them with greater choice and and Keith in this report demonstrate the real-life we have to ensure that the user choice control over services. Enabling people to have choice decisions and challenges faced by people lookingHowever, the success of the reforms is reforms work for everyone, particularly about their supports and services is a progressive for support through the user choice reforms.based on an assumption that all consumers those who are already vulnerable. approach and is broadly welcomed by both sectors. This includes challenges faced by people at thehave equal capacity to exercise choice and However, the success of the reforms is based on an intersection of aged care and disability reforms,control - a key challenge is how to ensure We believe the challenges to implementing assumption that most consumers have equal capacity to people with psychosocial disability, people who havethat the reforms work for everyone. a user choice service system that works for make and manage their choices. multiple and complex support needs and those living everyone are surmountable. in regional and remote areas.To understand who is most at risk of A key challenge is how to ensure that all people do, in
missing out as these reforms roll out,
Australian Red Cross commissioned I am inspired by the many fact, have meaningful choice and control. The full review demonstrates who is at risk of missing out in user choice reforms and why. While
researchers from the University of stories that show what happens In order to understand these challenges, particularly for there are a range of challenges to address, none ofAdelaide’s Centre for Housing Urban and when people are able to people who are experiencing extreme vulnerability, Red these are insurmountable. Knowing this, we areRegional Planning to review how the Cross commissioned researchers from the University compelled to do everything we can to help make surereforms might impact people experiencing exercise choice and control over of Adelaide’s Centre for Housing Urban and Regional that these once in a lifetime reforms can be made
extreme vulnerability. the supports they receive. Planning to look at how the reforms may impact those to work for all Australians, especially those who are
who are vulnerable. most vulnerable.The review drew heavily on unpublished works, including opinion pieces, to identify Red Cross has invested in this research to what is going on at the coalface of these understand more about who is most at major system reforms and determine who risk. We want to work with governments, will or is likely to miss out. businesses, philanthropists and people who are affected on solutions, so that we have The review found that, without safeguards, aged care and disability service systems people who are already the most that work for everyone. 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 Judy Slatyer – CEO
have complex medical and social problems. Australian Red Cross Desmond
Cross/Lesley
Red
This document contains the names and images of Australian Aboriginal and Torres Strait Islander peoples who may now be deceased. Image:
Cover: Australian Red Cross/Rodney Dekker
4 | User Choice Reforms User Choice Reforms | 5
Systemic barriers TO
The review found that there are a range of issues within the systems that may create barriers HEALTH SYSTEM ADVOCACYSUPPORTto entry and use. The way that both the aged care reforms and the NDIS work can make it hard & ACCESS
for some people to get the help they need. The main systemic concerns that were noted in the PEERreview are outlined below. CARER POORDISADVANTAGED MENTALCONCERNS LIMITEDLITERACY LIMITEDOR POORINFORMATION
Accessing information about the reforms Thin markets Putting major reforms in place within already complex Thin markets occur in situations where there are systems has required large scale, rapid change. The limited agencies offering services in a location or the ability to easily access and understand the reforms is range of services to choose from is limited. In Australia, critical for people to be able to get the help they need. the major concern is how the market approach for
user choice reforms will work in rural and remoteThis is particularly important given many of the people communities, where the cost of running services, BARRIER
who need services are also most likely to find it population size/density, environmental conditions and challenging to understand new and complex processes. cultural needs impact on service viability. In remote locations, it seems likely there will not be an increase in choice and control for some people. The issue of The place of advocacy thin markets also occurs for specialised services, for
people with rare conditions, Aboriginal and TorresAdvocacy is important in making sure the voices of BARRIER Strait Islander people and people from culturally andpeople who are ageing or living with disability are
linguistically diverse communities who have specificbeing heard as new systems roll out. For marginalised cultural support needs.groups in user choice markets, individual advocacy is valuable in supporting people to understand their rights and entitlements and to navigate systems, Interface with mainstream servicesespecially with people who find it hard to manage BARRIER complex issues and systems. Within the NDIS, there is a need to clarify how the scheme intersects effectively with other mainstream Support is also needed to ensure consumers achieve services such as health, housing and education. There the goals they are working towards, and raise issues and are also concerns about where the NDIS and aged care concerns about whether the system and its processes reforms intersect and how people with disability and
are suitable, effective and efficient. The availability of complex medical needs or who are ageing and haveappropriate, personalised and timely advocacy in both BARRIER non-ageing related disabilities will have their needs met.
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. CULTURALNEEDS IMPAIREDABILITY RURALREMOTE CRIMINALSYSTEM FROMSERVICES THINMARKETS
OR LIVING THE JUSTICE OTHER IN COGNITIVE DISCONNECTION
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 Currently her PHaMS support worker visits Demi in The second area of concern is the demographic
her home and this is her only access to mental health and social factors that mean that people fromformally diagnosed depression and anxiety.
services locally. This helps Demi to cope in between her highly marginalised groups are less likely to appointments with the mental health nurse.
have the capabilities needed to ensure the
As a young girl, Demi was taken from her parents’ home Demi is often overwhelmed by her depression, anxiety, user choice reforms work for them.
and placed in a state run children’s home. Later in life and loneliness. She is not well equipped to take a Demi experienced domestic violence where threats of proactive consumer role to understand what she is
burning down or blowing up the house were frequent eligible for and how to access it under the user choice It is clear that for people who experience overlappingand Demi’s actions and whereabouts were closely reforms, let alone being able to strongly self-advocate. layers of disadvantage, the chances of exclusion frommonitored by her ex-partner. The evidence shows that system and the reforms are highest. For example, for someone
demographic factors combine to create Demi is unlikely to be eligible for an NDIS individualised who is not living in a major city, has low literacy, isAs a result of her experiences in the state run funding package on the basis that her psychosocial experiencing family violence and managing on a low challenges for some people to have their needsresidential facility and with her ex-partner, Demi disability is episodic in nature. Funding for the service income, the chances of getting the right support met through user choice reforms.struggles to engage with and trust new people. She that Demi currently receives will be withdrawn as the through the reforms are reduced.also finds it difficult to communicate and assert NDIS is implemented and Demi can not afford to pay for
herself, and at times finds it hard to leave her house. a similar service even if it were available. Demi has a limited social support network and is socially isolated and lonely. Demi is also approaching the cut-off age for NDIS and she may have to access assistance through the aged Demi lives alone in a small town that does not have a care system. Given her limited social supports, she is
mental health service and she does not drive. She relies likely to have difficulty understanding how to navigate LOWon a public bus and car service to take her to a town this system and to negotiate effective supports for her CULTURE
43 km away so she can access her GP and mental health mental wellbeing. INCOME
nurse as part of her current Mental Health Plan. The
mental health nurse is often so busy that Demi cannot * Protecting the privacy of people in our programs is of utmost importance to Red NEEDS GEOGRAPHYsee her for up to six weeks. Cross. For this reason, stock images have been used and names have been changed. COMPLEX ? ?
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. ? ?
Jansen
istock.com/Silvia Credit:
Submission 67 - Attachment 1 CASE STUDY
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Groups at risk of missing out Multiple challenges
In the Australian community, many people face exclusion and disadvantage. It is not surprising that Sam* is an Aboriginal man in his late twenties His current service has been instrumental in helping
many of them are at risk of missing out in the user choice reforms, thus creating further divisions who lives in regional Queensland. him to secure housing and manage his gambling and
substance use problems, as well as supporting hiswithin our communities between those who have support and those who do not. recovery from mental health issues. Without ongoing Sam had a difficult upbringing, with his mother leaving supports in place, Sam has self-identified that he will the family when he was five. In childhood Sam was often be highly vulnerable to returning to his past ‘at risk’
They include: left home alone for long periods or was exposed to lifestyle, recidivism and re-imprisonment.
gambling, spending days in gaming rooms as his father (who was a problem gambler) played the pokies. Sam Sam has generally had negative experiences across attended school sporadically, leaving school altogether multiple service systems and as a consequence expects
People who are financially and People living in rural or when he was 12. that his requests for assistance or support will be
socially disadvantaged remote areas rejected. His view is that there is little point in asking
Sam has struggled with drug and alcohol issues for most because he will get knocked back, regardless of his of his life and developed a chronic gambling habit during needs. Sam has limited support networks around him
People who are homeless, his teenage years, leading to a conviction and custodial to advocate on his behalf. As such, he will struggle to
sentence for robbery with violence (undertaken to engage with or trust local NDIS planners, and to appeal People with specific who have lived experience pay for his gambling habit). While in prison he was or review any decisions.
cultural needs of homelessness, or who are diagnosed with bipolar disorder, anxiety and depression.
at risk of homelessness After his release from prison Sam was homeless, couch Sam faces considerable barriers to engaging with
surfing and living on the streets. He continues to services in a user choice system, including ongoing experience housing insecurity. experiences of stigma and discrimination from service People with limited or providers. His experience is influenced by being a young
People leaving care Sam is unlikely to be eligible for an NDIS individualised Aboriginal man who has spent time in prison, having poor system literacy funding package because his psychosocial disability is mental health conditions and experiencing ongoing
episodic and fluctuating in nature. Sam is focused on challenges with multiple addictions, being at risk of recovery and moving forward positively with his life. homelessness and having limited financial means.
People with limited decision making People with complex medical *Cross.ProtectingFor thisthereason,privacystockof peopleimagesinhaveour programsbeen usedisandof utmostnames importancehave been changed.to Red
and problem solving capacity and/or behavioural needs
Sam faces considerable barriers to engaging with services in a user choice
People in contact with the People resistant to receiving system, including ongoing experiences
criminal justice system social support of stigma and discrimination.
People with mental People at the age intersection health concerns of NDIS and aged care
These groups are vulnerable for a range of reasons People who are carers fully explored in the review. Photography
Radler
Gary
Credit:
CASE STUDY Submission 67 - Attachment 1
10 | User Choice Reforms User Choice Reforms | 11
Intersection of aged care and NDIS Where to from here?
Keith* is a 67-year-old man who lives with Keith has had regular periods of living on the streets Since the initial review of the literature, a number of reports and reviews have been released,
bipolar disorder and severe depression. Keith and is at high risk of homelessness. He has a low level of many of which aim to address concerns identified in the review.
literacy and is easily overwhelmed by appointments andalso has physical health problems including paperwork. He is very worried about any transition from arthritis, continence issues and is overweight. his current community-based support. He has been told
These include multiple reviews undertaken by the These developments demonstrate the progression of that he will not be eligible for mental health support
Joint Standing Committee on the National Disability the reforms and growing knowledge and understanding through the NDIS because of his age and that he will
Insurance Scheme; strategies released by the National about how to ensure implementation is successful.He struggles to look after his health, often forgetting need to access aged care services to meet his ongoing
Disability Insurance Agency including the Aboriginal andto take his medication which results in Keith making support needs. However he doesn’t think he needs to
Torres Strait Islander Engagement Strategy, the Rural The pace of change is rapid and, at times, confusing.impulsive and irrational decisions with negative access aged care services at his age and he says that if
and Remote Strategy, the Information, Linkages and It is critical that we ensure these reforms include allconsequences, as well as leading to risky situations he needs to he will live on the streets.
Capacity Building Commissioning Framework and the people and that everyone has the same choices andsuch as leaving his front door unlocked or placing
NDIS Quality and Safety Framework; the Productivity opportunities. Red Cross is committed to workingtowels on the stove. As a consumer, Keith’s need for support is significant
Commission’s report of Government Services and collaboratively with government, sector partners and but his capacity to make and manage choices about
NDIS Costs position paper; and the Draft Fifth National others to tackle this challenge so that the reforms canKeith has a history of trauma dating back to his early the supports he receives is extremely limited. In a user
Mental Health Plan. work for all Australians.childhood and is mistrustful of others. As a result choice service system, Keith is unlikely to be able to
of his mental health concerns and deep mistrust of exercise choice and control over the services he receives
A number of research reports have also been released If you want to know more about this work, pleaseothers, Keith is currently refused access to various without considerable support and assistance from a
including ‘How to get the NDIS on track from National contact servicedevelopment@redcross.org.au.local services, and his lack of insight means that he is trusted advocate.
Disability Services’1 and ‘Choice, control and thelikely to repeat his past actions of refusing referral,
NDIS – Service users’ perspectives on having choiceor to agree initially and then subsequently turn away Further, his support needs are diverse and go beyond 1 National Disability Services, (2017). How to get the NDIS on track. Report National and control in the new National Disability Insuranceservice providers. the aged care service system (including housing, health Disability Services, May 2017
Scheme’ from the Melbourne Social Equity Institute, 2 Warr, D., Dickinson, H., Olney, S., et. al., (2017). Choice, Control and the NDIS. and mental health). Without appropriate support
University of Melbourne.2 Melbourne: University of Melbourne.Keith often feels lonely and unsafe at home and requires Keith is likely to become homeless and his physical and
regular support to retain his accommodation; on one mental health are likely to deteriorate. occasion when he forgot to take his medication he cancelled his recent housing lease and gave away all of * Protecting the privacy of people in our programs is of utmost importance to Red his household goods. Cross. For this reason, stock images have been used and names have been changed.
Without appropriate support Keith is likely to become homeless and his physical and mental health is also likely to deteriorate greatly.
Droop
Cross/Renea Monino
Red
Australian istock.com/Juan Image: Image:
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