Submission
Inquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
March 2017
About YDAS
Youth Disability Advocacy Service (YDAS) is a state wide advocacy service for young people with disabilities in Victoria. We are the only advocacy service in Australia which exists specifically to work directly with young people with disabilities to achieve their human rights.
We offer a free individual advocacy service to young people aged 12-25 who have a disability. This means that you can come to us if you feel like your rights are being ignored and you need help.
YDAS is continually undertaking systemic advocacy and working on policy issues that are important to young people with disabilities such as housing, independent living, employment and education. We work to ensure that the interests of young people with a disability are heard by government and other decision-makers.
Established in 2006, YDAS is a core agency of the Youth Affairs Council Victoria. YDAS is funded by the Victorian Government.
Youth Disability Advocacy Service
Level 3, 180 Flinders St
Melbourne, VIC 3000
(03) 9267 3709 ydas@yacvic.org.au www.ydas.org.au
Author
Lauren Henley, Policy and Research Officer,
Youth Disability Advocacy Service
(03) 9267 3708 | ydaspolicy@yacvic.org.au
Table of Contents
- About the Youth Disability Advocacy Service …………………………………………… 3
- About the Youth Affairs Council Victoria ………………………………………………….. 3
- Introductory comments …………………………………………………………………………. 3
- Issues relating to eligibility for the NDIS ………………………………………………….. 4 4.1. Projected estimates ………………………………………………………………………………………… 4
4.2. Terminology …………………………………………………………………………………………………… 5
- Transferring existing services to the NDIS ………………………………………………. 7
- Issues relating to current NDIS processes ………………………………………………. 8 6.1. The inclusion of young people with psychosocial disability in the planning process …. 8
6.2. Approval of reasonable and necessary supports ………………………………………………. 11
- Information, Linkages and Capacity Building (ILC) ………………………………….. 12 7.1. Information and referral …………………………………………………………………………………. 12
7.2. Capacity-building for mainstream services ……………………………………………………….. 14
7.3. Individual capacity building …………………………………………………………………………….. 14
- Continued funding for services outside the NDIS ……………………………………. 15
- Conclusion ………………………………………………………………………………………… 16 2
- About the Youth Disability Advocacy Service The Youth Disability Advocacy Service (YDAS) is a Victorian advocacy service that works alongside young people with disability between the ages of 12 and 25 to raise awareness of their rights and to support them to achieve their goals. Our work is underpinned by international human rights principles articulated under the United Nations Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child.
We provide one-to-one support to young people with disability experiencing exclusion and discrimination through our individual advocacy service. We also tackle systemic issues affecting the full and equal participation of people with disability through our policy work.
YDAS is guided by a steering committee made up of young people with a range of experiences of disability. It operates as a core agency of the Youth Affairs Council Victoria (YACVic) and is funded by the Victorian Department of Health and Human Services.
-
About the Youth Affairs Council Victoria YACVic is the peak body and leading policy advocate on young people’s issues in Victoria. Its vision is that young Victorians have their rights upheld and are valued as active participants in their communities.
-
Introductory comments The right of people with disability to be supported to live independently and be included in the community has been well-articulated in the United Nations Convention on the Rights of Persons with Disabilities,1 which has been signed and ratified by the Australian Government. The National Disability Strategy 2010–2020, which maps out a national plan for the progressive realisation of the Convention, subsequently commits the Australian Government to work towards:
“A sustainable disability support system which is person-centred and self-directed, maximising opportunities for independence and participation in the economic, social and cultural life of the community.” (Council of Australian Governments 2011)
3
YDAS is committed to ensuring that all young people with disability have the support they need to actively participate and be included in the community. To this end, we are committed to working with the Commonwealth and Victorian governments to refine the interfacing arrangements between the NDIS and other service systems so that all young people with disability can access the support they need, when they need it. Matters pertaining to the funding of supports for people with psychosocial disability are particularly pertinent to the work of our organisation. At any one time, more than a quarter of all young people will experience mental illness (Youthbeyondblue 2017), with higher prevalence rates among young people with disability and Aboriginal and Torres Strait Islander young people. In more severe cases of mental illness, young people can experience functional limitations that restrict their participation in everyday life and lead to psychosocial disability.
In his 2015 paper, About Psychosocial Disability and the NDIS, Introduction to the
Concept of Holistic Psychosocial Disability Support, Paul O’Halloran defines
psychosocial disability as:
“Impairment due to a severe and persistent mental illness, which may cause significant adverse and long-term effects on their abilities for community and economic participation and to carry out the necessary daily activities of living.” (O’Halloran 2016)
While we commend and support efforts to meet the needs of people with psychosocial disability through the NDIS, we caution the Committee against placing mental health services purely within a disability framework. Many young people experiencing mental illness do not identify with the label of disability. The stigma surrounding mental illness in itself continues to prevent many young people from accessing mental health services (Lally, J., ó Conghaile, A., Quigley, S., Bainbridge,
E. and McDonald, C. 2013) and we fear that this situation is likely to worsen if people are forced to identify themselves as having a disability in order to access the support they need. To this end, we also support universal actions to strengthen the mental health of all young people and to ensure that generalist mental health and community supports are accessible to every young person regardless of background, identity, income, ability or where they live.
We welcome the opportunity to provide comment on the provision of supports for people with a psychosocial disability resulting from a mental illness, and the resourcing of mental health services more broadly.
- Issues relating to eligibility for the NDIS 4.1. Projected estimates
Current projections estimate that around 64,000 people with severe and persistent psychosocial disability will receive direct benefit from the NDIS through an individually funded package of supports (National Disability Insurance Agency 2016).
4
YDAS asserts that this figure must be viewed as an estimate only, with no person who is legitimately in need of support being denied access to the scheme once this figure has been reached. We remind the Joint Standing Committee of the events that unfolded in the ACT in 2016 after the estimated number of participants who would be eligible for the scheme (as outlined in the bilateral agreement between the ACT and the Commonwealth) had been reached. At this time, the NDIA advised that no new planning meetings would take place in the ACT, despite the fact that the NDIS was always intended to be an uncapped scheme (Australian Broadcasting Corporation 2016).
While this issue has now been resolved, it is a reminder of the need to ensure that all people with disability are assessed for eligibility on equitable terms – in accordance with the insurance-based principles that were core to the introduction of a scheme of lifetime disability care and support. The need for people to have access to services on equitable terms is also a core component of the National Disability Strategy 2010–2020 (Council of Australian Governments 2011) and the draft Fifth National Mental Health Plan, which was released for consultation in October 2016 (Department of Health 2016).
The same rules must also apply equally to individuals who meet the early intervention requirements for the NDIS, as established under Section 25 of the NDIS Act 2013 (Parliament of Australia 2013).
Early intervention strategies will be core to maximising outcomes for people with psychosocial disability under the NDIS, as well as ensuring the future sustainability of the scheme. Without receiving timely access to supports that are appropriate to their needs, young people with psychosocial disability are at risk of becoming disengaged from school, failing to progress to further education and failing to enter the workforce or maintain employment. This ultimately leads to lower socioeconomic outcomes in the longer-term (Department of Health and Human Services 2017).
4.2. Terminology
Section 24 (1: b) of the NDIS Act 2013 sets out the “disability requirements” that determine eligibility for the scheme. This section of the Act currently requires that a person’s condition or impairment needs to be permanent, or is likely to be permanent (Parliament of Australia 2013).
YDAS is aware of widespread concerns about the use of the term “permanent”. Many people with psychosocial disability and others working across the mental health sector do not feel that this definition of disability is consistent with the recovery-based framework that forms the value base for contemporary mental health practice nationally and internationally (O’Halloran, P. 2016).
We understand, however, that Section 24 (1: b) should also be read in conjunction with sub-section 2, which states that:
“For the purposes of subsection (1), an impairment or impairments that vary in intensity may be permanent, and the person is likely to require support under the
5
National Disability Insurance Scheme for the person’s lifetime, despite the variation.” (Parliament of Australia 2013)
After reading through documentation provided by the NDIA to clarify the definition of permanency as it relates to psychosocial disability, we are satisfied that this matter is well understood by the NDIA at a policy level (O’Halloran, P. 2016 and National Disability Insurance Agency 2015). Despite this fact, however, this terminology continues to cause confusion for NDIS planners, Local Area Coordinators and scheme participants alike.
We hold similar concerns about the NDIA’s continued usage of the term “psychosocial disability”. We understand that this term reflects the social model of disability; is well suited to the NDIS environment and has been well articulated at a policy level (O’Halloran, P. 2016 and National Disability Insurance Agency 2015). We are concerned, however, that it may not easily translate into the everyday lives of young people with mental illness and may therefore impede their ability to access the scheme. A survey undertaken by the ACT Mental Health Consumer Network in 2016, for example, revealed that the majority of respondents did not understand what was meant by the term “psychosocial disability” (Australian Broadcasting Corporation 2016). In our opinion, these findings are likely to reflect the experience of many young people who are still grappling with the diagnosis of mental illness or are not yet at the stage of seeking formal support.
We reserve further concerns in relation to the language of “functional impact”, and the extent to which young people with mental illness are likely to identify with this concept. In the case of psychosocial disability, the NDIA has advised:
“That any assessments of impact (functional or other) must account for functioning over a period of time rather than a point in time. This acknowledges the population of people with psychosocial disability or mental health conditions who ‘function well’ between ‘episodes’ but whose pattern of acute episodes (in both of severity and frequency) has impacted on daily activities of living and other core domains of life including: communication, self-management, social interaction, learning, mobility, self-care and the capacity for social and economic participation.” (National Disability Insurance Agency 2015).
Although we are reassured by the agency’s approach to the assessment of functional impact for people with psychosocial disability, we are concerned that there are many young people with severe mental illness who may not identify with the concept of “functional impact” or understand how the NDIS may be able to assist them in their recovery. Such concepts may also be unfamiliar to professionals working across other service sectors who may ultimately be responsible for providing information and referral to people who meet the eligibility requirements for the NDIS.
Recommendation 1: The NDIA must work with the mental health sector and the youth sector to develop Plain English materials that can help educate people with mental illness about the NDIS, eligibility requirements for the scheme and how it can assist individuals with severe and persisting mental illness. Promotional materials must use language that is commonly used across the mental health
6
sector, and must explain the circumstances in which someone with severe mental illness might meet the eligibility criteria for the NDIS in language that is easy to understand.
Recommendation 2: Each state government must develop a communication strategy to clearly articulate the steps it will take to build the capacity of staff working across other service systems to better understand the NDIS and how it could apply to people with severe mental illness.
- Transferring existing services to the NDIS We understand from the terms of reference for this inquiry that the Committee is currently exploring the feasibility of shifting all short- and long-term mental health services over to the NDIS. However, the terms of reference also question whether such services should continue to be made available to people who are not eligible for an individually funded package of supports under the NDIS. In the absence of an issues paper that clearly articulates the Committee’s thinking on these issues, it is difficult to ascertain exactly what is being proposed. In any case, we have outlined our concerns below and strongly encourage the Committee to undertake further consultation prior to making any changes to existing short- and long-term mental health services.
There are currently more than 600,000 people with serious mental illness who will not be eligible to receive an individually funded package of supports under the NDIS (National Disability Insurance Agency 2016), demonstrating a strong and persisting need for mental health services that remain outside the NDIS framework. In light of the fact that around 50% of lifetime cases of mental health disorders start by age 14 and 75% by age 24 (Youthbeyondblue 2017), such measures are crucial to the health and wellbeing of Australia’s young people.
At present, any individual can access services such as the Personal Helpers and Mentors service without obtaining a clinical diagnosis of mental illness (Department of Social Services 2017). In order to become an NDIS participant, however, the NDIA has advised that an individual will need to provide evidence of a formal diagnosis and previous interactions with the mental health system (National Disability Insurance Agency 2015).
While we understand the need for checks and balances to be put in place to ensure the long-term sustainability of the NDIS, there is a critical need for young people to have continued access to services outside the NDIS that do not require a clinical diagnosis. Statistically, we know that many young people with mental health problems do not seek professional health care, which means they often won’t have a formal diagnosis (Mindframe 2016). It is critical that there are less confrontational, more ‘mainstream’ services available to meet the needs of those young people who may still be struggling with the issue of seeking support.
In its consideration of this issue, we also urge the Committee to acknowledge the commitments that have already been made to people with mental illness under state
7
based policy initiatives. Victoria’s 10-Year Mental Health Plan, for example, includes the following outcomes:
- Universal access to public services – people with mental illness and their families and carers have access to high-quality, integrated services according to their needs and preferences. Access to specialist mental health services – people with mental illness, their carers and families have access to the public treatment and support services they need and choose, appropriate to their age and other circumstances, where and when they need them most (Department of Health and Human Services 2015).
Recommendation 3: To ensure continued support for the many people with severe mental illness who will not be eligible for an individually funded package of supports under the NDIS, state and federal governments must safeguard the long-term sustainability of those mental health services that will remain separate from the scheme. This is particularly crucial for existing mental health services that do not currently determine eligibility by way of a clinical diagnosis.
- Issues relating to current NDIS processes 6.1. The inclusion of young people with psychosocial disability in the planning process
Despite the best intentions of their families and professionals, young people with disability are often denied choice and control in basic decisions that affect their lives. This may impact negatively on their self-esteem, as well as their ability to make other informed decisions in the future (Pilnick, A., Clegg, J., Murphy, E. & Almack, K. 2010).
During a consultation forum held by YDAS in 2014, one young person with disability stated:
“Young people with disabilities are often overlooked when it comes to making decisions about what they want and need, when they are perfectly capable of doing so…We are the experts in this, and should be treated as such.” (Participant from youth consultation 2014)
When a young person comes into contact with the NDIS, there are a number of issues that can limit the level of autonomy they are able to exercise in the planning process. These issues are particularly relevant to young people who are under 18 years of age, young people who are under Community Treatment Orders and young people who are in mandatory admission in a clinical setting.
8
Regardless of age and personal circumstances, the scheme participant should always be at the centre of the decision-making process. The NDIS Act 2013 (Cth) re articulates the right of people with disability to actively participate in decisions about their lives. When talking about the planning process, for example, section 31 of the NDIS Act requires that the preparation, review and replacement of a participant’s plan should so far as reasonably practical:
-
be individualised
-
be directed by the participant
-
where relevant, consider and respect the role of family, carers and other persons who are significant in the life of the participant
-
where possible, strengthen and build capacity of families and carers to support participants who are children
-
if the participant and the participant’s carers agree–strengthen and build the capacity of families and carers to support the participant in adult life
-
consider the availability to the participant of informal support and other support services generally available to any person in the community; and
-
support communities to respond to the individual goals and needs of participants
-
be underpinned by the right of the participant to exercise control over his or her own life
-
advance the inclusion and participation in the community of the participant with the aim of achieving his or her individual aspirations
-
maximise the choice and independence of the participant
-
Facilitate tailored and flexible responses to the individual goals and needs of the participant (Parliament of Australia 2013)
Furthermore, Article 12 of the Convention on the Rights of the Child states:
-
States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.
-
For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law (Office of the High Commissioner for Human Rights 2017)
9
YDAS is particularly concerned about the high number of NDIS planning meetings that are taking place over the phone. We have anecdotal evidence to suggest this approach has already had a negative impact on a number of young people with disability residing in the North Eastern Metropolitan Melbourne roll out area.
When a meeting concerning a young person with disability is being conducted over the phone, actively involving a young scheme participant who may still be under the care of a parent or guardian becomes increasingly difficult. We understand that the NDIA has been under pressure to bring new scheme participants on board quickly in order to meet the targets outlined in the bilateral agreement between the Victorian Government in the Commonwealth. Although these challenges are valid, it is imperative that the basic rights of young people with disability are not eroded through this process.
Recommendation 4: Where a planning process involves a young person with disability who is still under the care of a parent or guardian or under Community Treatment Orders or in mandatory admission in a clinical setting, the NDIA must make every effort possible to engage with the young person directly, in addition to their parent or guardian(where appropriate).
Recommendation 5: When initiating conversations with new scheme participants, the NDIA must implement measures that will maximise the active and informed participation of young people with disability in the planning process. Such measures should be co-designed with young people with disability, and may include:
-
Providing young people with disability with information about planning meetings in advance. This will ensure the young person knows when their planning meeting will be taking place, and what the meeting will involve.
-
Ensuring young people with disability have access to information about the planning process in formats and languages that are appropriate to their needs. This includes the need to simplify language to the fullest extent possible by ensuring information is readily available to scheme participants in plain and Easy English.
-
Providing young people with choice and control over how and where their planning meeting will take place e.g. over the phone, in the home or in a community setting.
-
Informing young people that they are able to have a support person such as a parent/guardian, support worker, friend and/or independent advocate involved in the planning process if they so desire.
-
Informing the young person that they are able to request more time if they are not yet prepared for their planning meeting.
10
6.2. Approval of reasonable and necessary supports
Anecdotal evidence provided by people who have previously been through the planning process suggests that planners often have little understanding of how mental illness may impact on an individual’s functioning, or the supports that are required to enable them to participate in the community.
Below are just a few issues that were recently reported by scheme participants with mental illness on an online discussion group:
-
Refusal to fund the installation of home surveillance screens for a person with paranoid schizophrenia to enable them to feel safe in their own home.
-
Refusal to fund intensive home cleaning to make the home environment livable for someone who has not been able to shower or clean for quite some time as a direct result of their mental illness.
-
Refusal to fund taxi transport to enable someone to access their community where their condition may be triggered or exacerbated by travelling on public transport.
-
Failure to provide adequate funding for crisis support, such as assistance to obtain medication when an individual is unwell and the process of having a script filled is too overwhelming. (Members of NDIS Grass Roots Discussion group 2017)
The rate at which the NDIS is being rolled out makes it difficult to ensure the scheme is backed by a skilled and capable workforce. Victoria’s 10-year Mental Health Plan outlines the Victorian Government’s approach to this issue, noting the establishment of a centre for mental health workforce and development that will coordinate with the NDIS roll out across Victoria (Department of Health and Human Services 2015). It may be beneficial for COAG, through the Disability Reform Council to explore approaches to the issue of workforce capacity in each state and territory to identify models of best practice and put strategies in place to ensure the long-term sustainability of a skilled and capable workforce. In the meantime, immediate action is needed to safeguard people with mental illness from being treated unfairly in the planning process as a result of these current operational challenges.
Recommendation 6: The NDIA must coordinate the development and roll-out of mandatory on-the job training for Planners and Local Area Coordinators on issues relating to mental illness and psychosocial disability. This training should form part of the induction process for new Planners and Local Area Coordinators, and must be rolled out retrospectively across the existing workforce. Ideally, this training would be made available by the end of 2017.
Recommendation 7: The NDIA should employ several technical advisors or principal practice leaders who can act as subject matter experts on issues pertaining to mental
11
illness and psychosocial disability. These people should have delegated responsibility to carry out the functions of the CEO in relation to approving plans and reasonable and necessary supports, providing an adequate safeguard for people with psychosocial disability until all Planners and Local Area Coordinators have the capacity to properly and fairly assess such cases.
Recommendation 8: The government must commit to reviewing the effectiveness of NDIS processes in addressing the needs of people with psychosocial disability, in addition to the effectiveness of strategies aimed at building sector capacity at full roll out. This review should be undertaken in close consultation with people with psychosocial disability.
- Information, Linkages and Capacity Building (ILC) 7.1. Information and referral
In light of the fact that there are currently more than 600,000 people with mental illness who will not be eligible to receive an individually funded package of supports under the NDIS (National Disability Insurance Agency 2016), YDAS sees ILC as playing a critical role in providing appropriate information and referral for a broad range of young people who are in need of support. The interfacing arrangements between the NDIS and other service systems can be complex, and young people with disability will require assistance in order to access the support that is most suitable for them. Gaps in resources, opportunities and capabilities can lead to people not playing a full part in their community, and low resources and low participation lead into cycles of disadvantage and exclusion (Australian Social Inclusion Board 2012). ILC activities must actively work towards mitigating these risks.
We understand that Local Area Coordinators will be the single largest investment by the National Disability Insurance Agency in delivering ILC outcomes (Council of
Australian Governments 2015). According to the ILC Commissioning Framework,
one of the primary responsibilities of Local Area Coordinators is to:
“Provide short term assistance to people who do not have an NDIS plan to connect into mainstream services and community activities.” (National Disability Insurance Agency 2016)
The ILC Policy Framework indicates that local area coordination is expected to be of particular benefit to people who:
-
need one-off, low intensity or episodic supports that are better delivered and managed through funding arrangements other than through IFPs
-
need support so that their capacity to live independently does not deteriorate to a point where they would meet the access criteria for the NDIS and require an IFP to participate socially or economically in the community
12
-
need low levels of support to live independently in the community, but are not receiving an IFP, where access to ILC will mean they do not have to test their eligibility for an IFP
-
would otherwise meet the access criteria for the NDIS and would therefore be eligible for an IFP, but only require low levels of support that could be provided through ILC; or
-
Access specialist supports through an IFP but also have needs that can (and should) be supported through the mainstream or community sectors, and/or ILC (Council of Australian Governments 2015).
The brief of Local Area Coordinators is clearly intended to extend well beyond those people with disability who are eligible for an individually funded package of supports under the NDIS. Since the scheme commenced national roll out in July 2016, however, agencies that have been funded to undertake local area coordination have been inundated by responsibilities relating to the development of personal plans, with strong anecdotal evidence to suggest that they simply do not have the time or resources available to focus on the other elements of their role. The government must assess the function and resourcing of Local Area Coordination agencies and ensure they have the knowledge and capacity to fulfil their full range of functions into the future. In light of the fact that Local Area Coordinators are expected to have strong knowledge of services and systems within their local jurisdiction, these efforts are also crucial to the direction outlined in the draft Fifth National Mental Health Plan. The draft plan acknowledges that:
“…a regional focus is a key platform of the change that is needed to address the fundamental shortcomings of the existing system. It is at the regional level where practical, targeted, co-produced and locally appropriate action can be taken in partnership with community to drive efforts under this Plan. It is also at the regional level where strong community collaborations, engagement with people with lived experience, and partnerships can be formed to work together to achieve better outcomes for consumers and carers.” (Department of Health 2016)
Recommendation 9: The Government should commission an independent audit of Local Area Coordinator services in 2019 for the purpose of identifying existing areas of unmet need.
To ensure the interfacing arrangements between the NDIS and other service systems work effectively, state governments must also implement measures aimed at building the capacity of staff working across other service systems to understand the NDIS and how it could apply to people with severe mental illness to build their capacity to provide timely information and referral; as outlined in recommendation 2.
13
7.2. Capacity-building for mainstream services
YDAS believes the ILC Framework could play a vital role in addressing some of the service gaps that currently exist for young people with disability who experience mental illness. Although young people with disability are twice as likely to experience mental illness than other young people, they are still far less likely to receive an appropriate diagnosis or treatment (Commissioner for Children and Young People 2013, VicHealth 2012 and Cooper, S.A., Smiley, E., Morrison, J., Williamson, A. and Allan, L. 2007).
Through our work with young people with disability, we have found that:
-
Young people with disability are often excluded from mental health services on the basis that their disability makes diagnosis and treatment too complex (Commissioner for Children and Young People 2013).
-
They often face the presumption that their mental health problems are inherent to having a disability rather than as a separate experience of poor mental health (Commissioner for Children and Young People 2013 and Department of Developmental Disability Neuropsychiatry 2014).
-
Most mental health practitioners have very limited training, education and expertise in providing mental health services to people with disability (Commissioner for Children and Young People 2013 and Department of Developmental Disability Neuropsychiatry 2014).
We are aware that the Victorian Government has already made a commitment to improving the accessibility of clinical mental health assessment, treatment and support for people with an intellectual disability and people with autism through the
Victorian State Disability Plan (Victorian State Government 2016). While we
commend this approach, it is imperative that efforts to improve the accessibility of mental health services focus on the needs of all people with disability, rather than a few diagnostic sub-groups, and extend to the many non-clinical services that are most commonly used by young people.
7.3. Individual capacity building
YDAS supports the provision of funding for mental health-related projects and programs that align with activity stream 4 of the ILC Commissioning Framework, which relates to individual capacity building. In allocating funding, we would encourage the government to look favorably upon mental health projects and services that do not use the language of disability. This reaffirms the commitment that has been outlined in the ILC Policy Framework which states:
“Particular consideration will be required for people who may not see themselves as requiring support from a ‘disability’ scheme, such as those with mental illness.” (Council of Australian Governments 2015)
14
Mental health-related services that are funded under the ILC Framework should be open to any individual who claims to need them, regardless of whether or not they have received a clinical diagnosis. This is particularly important for young people with mental illness who are often hesitant to seek formal support for fear of being stigmatised. When assessing ILC applications, we would also encourage priority being placed on services that are most commonly used by young people such as online and telephone services (Australian Broadcasting Corporation 2014).
Additionally, when entering into contractual arrangements with ILC providers, the government must clearly outline the accessibility measures that are to be complied with in the delivery of the service so that these services do not exclude people with disability seeking support for mental illness.
Recommendation 10: The NDIA should support ILC projects that will assist in meeting the needs of young people with mental illness, regardless of whether or not they have received a clinical diagnosis. Given the high prevalence rates of mental illness amongst young Australians, the NDIA should prioritise service formats that are appealing to young people, and that are universally accessible to young people with disability.
- Continued funding for services outside the NDIS The division of responsibilities between the NDIS and other service systems clearly identifies a need for adequate, continued funding for services that are currently delivered through other service systems. Statistically, we know that many young people with mental illness will not seek professional health care and that family doctors, school-based counsellors and pediatricians provide the services that are most frequently used by young people with mental health problems (Australian Broadcasting Corporation 2014 and Mindframe 2016).
In keeping with recommendations previously put forward by the Youth Affairs Council of Victoria on the topic of youth mental health, YDAS recommends:
-
Ensuring schools are adequately supported to strengthen the mental health of their students, including through partnerships with health and community services.
-
Adequately resourcing the youth support sector to work in spaces of prevention and early intervention, and to connect young people to specialist help.
-
Improving young people’s mental health literacy and strengthening their support networks of community and peers.
-
Coordinating mental health reform with other areas of policy development and planning, including education, family violence, and vocational education and training.
15
-
Ensuring all young people who need mental health services can access them and receive adequate, appropriate support.
-
Learning from the challenges of the Barwon NDIS pilot and the problematic recommissioning of mental health services. Ensuring young people can access online supports which are accurate and age appropriate, and which enhance their access to offline supports. (Youth Affairs
Council Victoria 2015)
- Conclusion We would like to thank the Joint Standing Committee for providing us with an opportunity to help inform its inquiry into the delivery of supports to people with psychosocial disability relating to a mental illness.
We acknowledge the difficulty governments currently face in ensuring high-quality services are universally available to people with mental illness and psychosocial disability during the transition to the NDIS. We commend the Joint Committee on the work that is being undertaken in relation to this inquiry, and assert the need for continued consultation with people with psychosocial disability during, and after the transition to the NDIS. Similar measures have been explicitly referenced in the draft Fifth National Mental Health Plan, which states that:
“Progress should be monitored and reported on, and there should be a commitment to ongoing review to determine whether efforts are directed in the right places and delivering desired outcomes.” (Department of Health 2015)
We welcome the opportunity to work more closely with the Joint Standing Committee in the future to work towards the implementation of the recommendations that have been included throughout this submission. We have summarised our recommendations below:
-
The NDIA must work with the mental health sector and the youth sector to develop plain English materials that can help educate people with mental illness about the NDIS, eligibility requirements for the scheme and how it can assist individuals with severe and persisting mental illness. Promotional materials must use language that is commonly used across the mental health sector, and must explain the circumstances in which someone with severe mental illness might meet the eligibility criteria for the NDIS in language that is easy to understand.
-
Each state government must develop a communication strategy to clearly articulate the steps it will take to build the capacity of staff working across other service systems to better understand the NDIS and how it could apply to people with severe mental illness.
-
To ensure continued support for the many people with severe mental illness who will not be eligible for an individually funded package of supports under the NDIS, state and federal governments must safeguard the long-term
16
sustainability of those mental health services that will remain separate from the scheme. This is particularly crucial for existing mental health services that do not currently determine eligibility by way of a clinical diagnosis.
-
Where a planning process involves a young person with disability who is still under the care of a parent or guardian or under Community Treatment Orders or in mandatory admission in a clinical setting, the NDIA must make every effort possible to engage with the young person directly, in addition to their parent or guardian(where appropriate).
-
When initiating conversations with new scheme participants, the NDIA must implement measures that will maximise the active and informed participation of young people with disability in the planning process. Such measures should be co-designed with young people with disability, and may include: o Providing young people with disability with information about planning meetings in advance. This will ensure the young person knows when their planning meeting will be taking place, and what the meeting will involve. o Ensuring young people with disability have access to information about the planning process in formats and languages that are appropriate to their needs. This includes the need to simplify language to the fullest extent possible by ensuring information is readily available to scheme participants in plain and Easy English. o Providing young people with choice and control over how and where their planning meeting will take place e.g. over the phone, in the home or in a community setting. o Informing young people that they are able to have a support person such as a parent/guardian, support worker, friend and/or independent advocate involved in the planning process if they so desire. o Informing the young person that they are able to request more time if they are not yet prepared for their planning meeting.
-
The NDIA must coordinate the development and roll-out of mandatory on-the- job training for Planners and Local Area Coordinators on issues relating to mental illness and psychosocial disability. This training should form part of the induction process for new Planners and Local Area Coordinators, and must be rolled out retrospectively across the existing workforce. Ideally, this training would be made available by the end of 2017.
-
The NDIA should employ several technical advisors or principal practice leaders who can act as subject matter experts on issues pertaining to 1mental illness and psychosocial disability. These people should have delegated responsibility to carry out the functions of the CEO in relation to approving plans and reasonable and necessary supports, providing an adequate safeguard for people with psychosocial disability until all Planners and Local Area Coordinators have the capacity to properly and fairly assess such cases.
17
-
The government must commit to reviewing the effectiveness of NDIS processes in addressing the needs of people with psychosocial disability, in addition to the effectiveness of strategies aimed at building sector capacity at full roll out. This review should be undertaken in close consultation with people with psychosocial disability.
-
The Government should commission an independent audit of LAC services in 2019 for the purpose of identifying existing areas of unmet need.
-
The NDIA should support ILC projects that will assist in meeting the needs of young people with mental illness, regardless of whether or not they have received a clinical diagnosis. Given the high prevalence rates of mental illness amongst young Australians, the NDIA should prioritise service formats that are appealing to young people, and that are universally accessible to young people with disability.
18
- Bibliography
Australian Broadcasting Corporation, National Disability Insurance Scheme accused of
blocking participants despite being uncapped (2016) accessed 21 February 2017 http://www.abc.net.au/news/2016-10-14/ndis-accused-of-blocking-participants/7934650.
Australian Broadcasting Corporation, Psychosocial disability definition causes confusion among NDIS applicants (2016) accessed 21 February 2017 <http://www.abc.net.au/news/2016-04-18/ndis-confuses-applicants-with-psychosocial definition/7334114>.
Australian Broadcasting Corporation, One in five young people struggle with mental illness but few seek help (2014) accessed 21 February 2017 <http://www.abc.net.au/news/2014-06 18/young-people-with-mental-illness-do-not-seek-help/5530748; Mindframe, The mental health of young Australians (2016) accessed 20 February 2017 http://www.mindframe media.info/for-mental-health-and-suicide-prevention/talking-to-media-about-mental illness/facts-and-stats#C&Y>.
Australian Social Inclusion Board, Social Inclusion in Australia: How Australia is faring
(2012) P12.
Commissioner for Children and Young People (Western Australia), The Mental Health and
Wellbeing of Children and Young People: Children and Young People with Disability (2013).
Council of Australian Governments, A Framework for Information, Linkages and Capacity Building, ‘How will access to ILC work?’ (2015) P7.
Council of Australian Governments, National Disability Strategy 2010-2020, ‘4 - Personal and community support’ (2011) P44.
Department of Developmental Disability Neuropsychiatry (DDDN), Accessible Mental Health
Services for People with an Intellectual Disability: A Guide for Providers (2014).
Department of Health, Fifth National Mental Health Plan: Draft for consultation, ‘Values that underpin the Fifth Plan’ (2016) P16-18.
Department of Health and Human Services, Early intervention in mental illness (2017) accessed 1 March 2017 <https://www2.health.vic.gov.au/mental-health/prevention-and promotion/early-intervention-in-mental-health>.
19
Department of Health and Human Services, Victoria’s 10-year mental health plan (2015) accessed 21 February 2017 <https://dhhs.vic.gov.au/publications/victorias-10-year-mental health-plan>.
Department of Social Services, Personal Helpers and Mentors (PHaMs) (2017) accessed 21 February 2017 <https://www.dss.gov.au/our-responsibilities/mental-health/programs services/personal-helpers-and-mentors-phams>.
Feedback provided on NDIS Grass Roots Discussion group on Facebook (February 2017) https://m.facebook.com/groups/239631286154106?refid=27.
Lally, J., ó Conghaile, A., Quigley, S., Bainbridge, E. and McDonald, C., Stigma of mental illness and help-seeking intention in university students, ‘BJ Psych Bulletin’ (2013) accessed 2 March 2017 http://pb.rcpsych.org/content/37/8/253.
Mindframe, The mental health of young Australians (2016) accessed 20 February 2017 http://www.mindframe-media.info/for-mental-health-and-suicide-prevention/talking-to-media about-mental-illness/facts-and-stats#C&Y; Australian Broadcasting Corporation, One in five young people struggle with mental illness but few seek help (2014) accessed 21 February 2017 <http://www.abc.net.au/news/2014-06-18/young-people-with-mental-illness-do-not seek-help/5530748.
National Disability Insurance Agency, Attachment A: Key Data on Psychosocial Disability
and the NDIS as at 30 June 2016 (2016) P1.
National Disability Insurance Agency, Information, Linkages and Capacity Building
Commissioning Framework, ‘Local Area Coordination is part of ILC’ (2016) P13.
National Disability Insurance Agency, NDIS and Mental Health: Key themes (published
following the NDIS and mental health webinar which took place on 7 October 2015) P1-2.
Office of the High Commissioner for Human Rights, Convention on the Rights of the Child (1989) accessed 21 February 2017 http://www.ohchr.org/EN/ProfessionalInterest/Pages/CRC.aspx.
Office of the High Commissioner for Human Rights, Convention on the Rights of Persons with Disabilities (2006) accessed 1 March 2017<http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisa bilities.aspx>.
20
O’Halloran, P., About Psychosocial Disability and the NDIS, Introduction to the Concept of Holistic Psychosocial Disability Support, ‘8 - People with severe and persistent mental illness in need of NDIS support’ (2016) P7-9.
Parliament of Australia, NDIS Act, ‘Section 24 – Disability requirements’ (2013) accessed 16 February 2017 http://www.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s24.html.
Parliament of Australia, NDIS Act, ‘Section 25 – Early intervention requirements’ (2013) accessed 16 February 2017 http://www.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s24.html.
Parliament of Australia, NDIS Act, ‘Section 31 - Principles relating to plans’ (2013) accessed 30 January 2017 http://www.austlii.edu.au/au/legis/cth/consol_act/ndisa2013341/s31.html.
Pilnick, A., Clegg, J., Murphy, E. & Almack, K., Questioning the answer: Questioning style, choice and self-determination in interactions with young people with intellectual disabilities, ‘Sociology of Health and Illness’ (2010) P415-436.
VicHealth, Disability and health inequalities in Australia: Research summary (2012); Cooper, S.A., Smiley, E., Morrison, J., Williamson, A. and Allan, L., Mental ill-health in adults with intellectual disabilities: prevalence and associated factors (2007).
Victorian State Government, Absolutely Everyone: State disability plan 2017-2020, ’Action 10 - Dual disability’ (2016) P29.
Young person who participated in consultation forum hosted by the Youth Disability Advocacy Service (YDAS) in 2014 to inform YDAS’ submission to inquiry into Social Inclusion and Victorians with a Disability.
Youth Affairs Council Victoria, Strengthening young people’s mental health: A submission to the Victorian Government’s 10 Year Mental Health Strategy (2015) P5-6.
Youthbeyondblue,Stats and facts (2017) accessed 20 February 2017 https://www.youthbeyondblue.com/footer/stats-and-facts.
21