Submission to
Australian Parliament Joint Standing Committee on the NDIS
enquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
February 2017
Dear Sir/Madam
Mental Health Carers NSW is the peak body in NSW representing the interests of the carers of people with a mental illness. Our vision is for an inclusive community and connected carers; and our mission is to empower carers for mental health. We undertake systemic advocacy on behalf of mental health carers to improve their recognition and support in mental health and related social services.
Thank you for providing the opportunity to us to submit our views to this enquiry. Our submission is based on the information we have received from our members and advisors and on material from partner organizations such as BEING, Way Ahead, Anglicare, Carers Assist and Carers NSW and colleagues working in the health system.
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
Our overall summary and recommendations
Summary
There is a need for a review of the approaches of the NDIS in relation to the eligibility criteria, language and systems for people with a psychosocial disability. The late inclusion of this group has meant that NDIS systems and process have developed and are geared to people with intellectual and physical disability. Consequently, these systems and processes may not be appropriate for people with a psychosocial disability and their carers. These approaches and practices include the concept of a lifetime disability (which may not be consistent with a recovery approach to mental illness), the fluctuating needs for people with a mental illness and a psychosocial disability, the use of language which has a different meaning with the traditional disability and mental health sectors, and the approach to planning and purchasing services for individuals actively engaged with the mental health system.
There is a real danger of significant gaps in services emerging for an indefinite period with the closure of some services in NSW and their state and commonwealth funding in scope to go into the NDIS pool. These closures are planned prior to the establishment of adequate and appropriate systems and processes with the NDIS. This is particularly of concern regarding individuals with both an intellectual disability and a mental illness, those with behavioural issues associated with their disability, hard to reach groups and individuals, and those involved with the criminal justice system, particularly forensic patients. There are currently a number of individuals trapped in the acute mental health system whose care needs are better suited to services funded under the NDIS but who cannot access these service because a lack of systems and transition processes in place for people with psychosocial disability.
A major concern with the planned approach to Information, Linkages and Capacity Building (ILC) within the NDIS is the proposal for these services to be provided by local organisation funded under time limited and often small grants. This give rise to concerns that major gaps will emerge in this sector as some activities can only be adequately provided by established organisations covering large populations and with the capacity to provide stable, well established quality services. Examples of these services are the development and maintenance of large databases of service providers to support telephone information/referral services, meeting the continuing training needs for carers and advocates, continuing advocacy to central agencies and providing a reputable voice to governments from particular groups.
Recommendations
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The Commonwealth and State Governments should, for the short to medium term, continue to fund those services currently used by people with psychosocial disabilities that will no longer be provided under the NDIS. This includes a number of services currently provided by the Department of Disability and Aged Care in NSW, carer support services and respite services for carers (such as those provided by Anglicare and others).
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There should be greater focus on early intervention for people with psychosocial disability or at risk of developing long term psychosocial disability. This could be achieved by introducing mechanisms for specific funding under the ILC to fund services whose task is to identify ‘hard
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
to reach’ individuals and individuals at risk who have not yet approached or accessed the NDIS. In addition, close cooperation and robust referral pathways and joint service planning protocols should be developed with state funded clinical mental health services.
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The NDIS should take a proactive stance to the provision of some Information Linkages and Capacity Building services by seeking to fund organisations covering wide populations and with sufficient capacity to provide consistent high quality services for individuals and their carers.
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The introduction of mechanisms within the NDIS to enable it to be more interactive and not just reactive, particularly in relation to working with state government mental health services to ensure continuity of care for people with psychosocial disabilities and integration of clinical treatment and support into disability support plans and packages.
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The NDIS must ensure that people with psychosocial disability and an involvement with the criminal justice system are not disadvantaged compared with people with the same needs who do not have an involvement with the criminal justice system. In addition, to support individuals during their transition from gaol, services should be ‘block funded’ under the NDIS while more individualised plans are being developed.
Comments on the specific terms of reference
The eligibility criteria for the NDIS for people with a psychosocial disability The concept of recovery1 underpins the approach to care for people with mental health care in Australia. This approach recognises the personal process consumers and their families/carers work through as they face the challenges of mental illness and their experiences with services. It aims to re establish self-esteem, identity and a meaningful role in society for those with a mental illness. Recovery approaches acknowledge that the effects of illness and subsequent psychosocial disability may or may not diminish over time. It is a pathway to social inclusion and a foundation for the provision of disability supports for people with a psychosocial disability.
A major challenge within the process of assessment and planning within the NDIS is the adherence to recovery principles for people with a psychosocial disability. This challenge arises as the NDIS focuses on lifelong limitations and disabilities to meet eligibility, and this has the capacity to overlook the identification and harnessing of strengths and ignore the principle of recovery.
1 For people with a mental illness recovery does not necessarily mean achieving a state without mental illness, impairments or disabilities. Impairments and psychosocial disabilities can be long lasting or intermittent even for people whose mental health condition is well managed. Recovery is defined by each individual and is about achieving an optimal state of personal, social and emotional wellbeing whilst living with or recovering from a mental illness. It is about maximising the potential of individuals with a psychosocial disability to participate in the community.
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
There would appear to be an inherent conflict between recovery principles, which focus on improvement and reduction of the impact of disabilities, and the principles underlying the NDIS, which stresses lifelong impairment as a pre-requisite in qualifying for assistance.
We have noted the submission by the Commonwealth Ombudsman to the Senate Enquiry (submission
- are support these observations. That submission commented that: We have received feedback that suggests a barrier to accessing the Scheme, especially for young people with psychosocial disability, is that medical professionals may be reluctant to assess the person’s condition as permanent or likely to be permanent. This tends to be either because of the difficulties with early diagnosis or for fear of ‘labelling’ a young person with a condition that has associated stigma. Stakeholders also indicated that some health professionals believe making a diagnosis of ‘permanent’ may impede recovery for some people.
It appears that while the NDIS has a qualifying requirement of permanency for lifelong disability it will be precluded from supporting early intervention in psychosocial disability.
In a recent survey of NDIS participants, carers and support workers, conducted by BEING NSW (BEING, 2017, NDIS Survey: summary of Findings), respondents reported that the NDIS assessment and planning process did not adhere to Recovery principles. They reported that the assessment process was not transparent, was confusing and difficult to negotiate without the assistance of an advocate or support worker and, consequently, disempowered the applicant. Respondents also reported confusion on the part of NDIS assessors as to the assessment of psychosocial disability and the test for lifetime impairment.
Carers and support workers both complained of the time involved in waiting for the phone to be answered. They reported that it was difficult to contact NDIS planners, who often did not return phone calls or meet agreed deadlines, adding to the failure of the service to meet recovery principles. They formed the view that NDIS planners did not understand the needs of people with psychosocial disabilities and were overwhelmed by people who were mentally ill and had psychosocial disability. This finding is supported by the submission from the Commonwealth Ombudsman (submission 4) where he wrote:
some LACs [Local Area Coordination] do not have even a basic understanding of the impact of a mental health condition on a person’s life or on their family / community many LACs seemed ill-prepared to respond appropriately to the issues raised by participants with mental health conditions and/or their families and carers, perhaps due to a lack of experience and training where an LAC was unable to assist with an issue, they appeared to lack awareness of appropriate referral channels for people with mental health conditions.
In addition, consumers and support workers often received conflicting information on eligibility and the process of assessment and planning. They reported a particular negative impact on consumers who became confused, anxious, uncertain and concerned if they were to receive services and if so, when, as the process was lengthy and required considerable effort and knowledge. Clients without an
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
advocate suffered particularly. Consumers and carers found it difficult to understand the delay in determining an application and providing access to services. Stories of a six, twelve or even eighteen months delay have been reported for people currently housed in mental health inpatient facilities who would benefit for alternative housing arrangements through the NDIS. Such lengthy delays are inconsistent with recovery principles or the minimisation of permanent disability.
Another challenge for people with a psychosocial disability is in assembling the evidence they need to support their application. Three issues arise – the cost, completeness and accuracy of the reports, and the time required.
Assembling the evidence from the health system can be a costly exercise. Applications for medical reports and assessments require an out-of-pocket cost for the applicant – sometimes creating considerable hardship. They may require the person paying for an additional consultation simply for the task of requesting and receiving a report. This point has been supported by other submission, e.g. submission 4.
In addition, the assessment of the health professional may be based on an engagement with the consumer on an atypical day. That is, many people with mental health issues that limit their capacity for interaction, mixing in public, assessing public transport, etc., tend to stay away and not keep their appointment on those days when the symptoms are too severe. Consequently the medical professional only sees them on their ‘good’ days, which may result in an inadequate description of the full impact of their disability.
We have been informed that the NDIS assessment process can place inappropriate pressure on the applicant to come up with evidence in a timeframe that they cannot meet. Applications to health services for copies of records may take up to 30 days whereas LACs may require the applicant produce the material within 21 days.
Access to PHaMs and PIR programs The respondents in the BEING survey (quoted above) reported that PHaMs and PiR services were now focused on helping people apply for NDIS to the neglect of other services. Consequently, fewer services were available to existing and new clients. Services are now no longer available to consumers without an NDIS package and this is opening up gaps in the available services for people with psychosocial disabilities. We are also concerned that the PHAMs and PiR programs have been very successful in meeting the needs of people with significant support requirements who may not be eligible for the NDIS due to the requirement of permanency of their disability, or who may struggle to maintain contact with NDIS given its emphasis on consent and self-direction, (due to the nature of their illness and disability). Access to these services needs to remain available for this group and alternative funding strategies for the NDIS need to be considered to the extent these are required to allow programs such as these (PHaMS and PiR) to continue to support to people with psychosocial disability.
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
Impact of the transfer of state government funded services to NDIS A particular concern in NSW is the interface with specialist state government operated disability services and mental health services for both children and adults. To illustrate this issues we focus on the current successful partnership between services provided by the NSW Department of Disability and Aged Care and a speciality child mental health unit within a teaching hospital which provides care for children with both mental health conditions and intellectually disability.
It has been estimated that between 50% and 80% of school aged children with an Autism Spectrum Disorder (ASD) also have symptoms of mental illness or mental disability (Simonoff et al, 08). Concern has been expressed that while the NDIS may work to provide support life-long for many clients it will fail to support complex cases that have previously been managed through government agencies. Translated into a NSW context, such patients alone would easily fill all of the current specialist child and young person’s mental health services beds in the state.
The shift from state government provided services to provision by non-government-organisation (NGO) is likely to result in a reluctance of these NGOs to take on clients with an intellectually disabled persons who also have severe behavioural and continuing mental health problems. This is because they may not have the expertise to manage the behaviour, they don’t have the funding or are of the size to warrant acquiring that level of expertise and/or they will not find it financially viable to manage complex cases. The concern is that these individuals will have no option but to seek assistance from mental health services despite the inappropriate nature of these services to care and house, long term, people with intellectual difficulties.
The closure of government operated services in NSW for children with intellectual disability and behavioural problems associated with mental disability, will result in:
a loss in expertise, as many highly trained individuals may not find continuing employment in this sector with NGOs loss of existing long standing integrated models of care between health and disability service loss of training and development currently funded by government departments as this funding may be lost a reduction in research as this funding may be lost the loss of a centralised capacity for the maintenance of standards within narrow speciality services an unsustainable burden being placed on general Child and Youth Mental Health Services across the state, to the exclusion of its current target population. Scope and level of funding for mental health services under the information linkages and capacity building framework The information, linkages and capacity building services need to be targeted to:
those people with psychosocial disability who need assistance to access the NDIS because they lack capacity or awareness of the scheme
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
those who are ‘hard to reach’ and may be resistant because of their mental illness or trauma from past engagements with services those who lack adequate advocacy support to successfully navigate the NDIS assessment and planning process those whose mental illness and psychosocial disability makes it difficult to participate in the assessment and planning process.
These needs within the community will continue whether or not a local agency has been provided with funding to provide these services. However, it is our understanding of the ILC program that it is to be provided by local NGO agencies funded with time-limited grants. This suggests that it is up to the organisations seeking a grant to identify the needs of the community and apply for a grant. The problems we identify with this process is that it has the significant potential for large areas of need for advocacy, information and capacity building to be overlooked and not funded either because no agency has identified the need or the need has been identified but no agency has been interested in applying for funding to fill the gap in service. Alternatively, the need may be identified and an application made but not funded due to inadequacies in the application or some other deficiency in the process. Whatever the reason when gaps in services appear some individuals in the community are missing out on the assistance they need.
One of our concerns with the framework for the funding of services under the ILC is that service of individual advocacy will not be funded. Our members, who are carers, inform us that they hold significant concerns over the impact the level of, and quality of, advocacy has in getting the package they need to support their family member with a psychosocial disability. Their experience is that the higher the advocacy skills of the carer or other support person the more successful they are in securing the package they need. That is, those individuals in need of a package may not end up with the level of package they need if they are lacking in the level of advocacy that other participants enjoyed. This raises major concerns over the capacity of the NDIS to deliver a fair service where people are getting the assistance they need irrespective of the advocacy skills of their carers. The fact that advocacy seems to be making such a big difference to packaging at the moment speaks to the immaturity of the system. But this immaturity also makes advocacy more important to effective functioning of the system in meeting the needs of participants.
One option for filling this gap is for the NDIA to proactively fund organisations with the capacity to cover wide population groups and provide advocacy on behalf of the individual and their carers. Such a strategy would not rely on an organisation to identify local needs but would require the NDIA to actively seek organisations with the interest and capacity to provide these services at a level and quality that will meet the community’s needs.
The planning process including the role of PHNs People with psychosocial disabilities are likely to have a continuing need for primary health care, engagement with specialist mental health services from state government funded agencies as well as support from the NDIS. Although challenges have existed in the past within the previous state government framework of disability, primary and mental health services, we are concerned with the MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
potential, in the future, for a widening gap in the planning between the three organisation systems of the NDIS, PHNs and local health authorities, as these are no longer within the same jurisdictions.
Previously when disability services and health services were funded and delivered by different arms of state government services there was the potential for, and many excellent examples of, close working relationship, shared planning and agreements on working arrangements between health and disability services. The new landscape now requires that inter-sectoral cooperation to be spread across three sectors; the commonwealth government based NDIS, the independently operated PHNs and the state government health services. It is unclear at this stage how the potential for the emergence of gaps and a lack of integration of services will be overcome. For example, the mandate of PHNs in funding mental health services is that they are restricted to funding health and care services whereas the NDIS will be reliant on NGOs to fund and provide information, advocacy and capacity building services.
An additional concern is the continuing need for people with psychosocial disability to attend primary health and mental health services. The impact of psychosocial disability may result in a difficulty in a person accessing the health services they need because of their functional disabilities. This suggests that their NDIS package of care may need to include assistance in accessing primary health and mental health services. However, our members inform us of the resistance of LOCs to include access to health care in a package.
Whether spending for people with psychosocial disabilities is in line with projections We have noted the submission to this enquiry from the Mental Health Association of Australia (Submission 1) and their estimate of the size of the target population of people with a psychosocial disability. We included the comments from their summary here:
‘The population that is in scope for the psychosocial disability elements of the NDIS is people with a severe mental illness and a significant functional impairment that is likely to be permanent. It is estimated that the population of Australians with severe mental illness is 502,000 adults and a further 123,000 persons under 18, based on population modelling from a number of services. The subset of those with significant permanent functional impairment is less clear.
The National Mental Health Service Planning Framework (NMHPF), progressed on behalf of all Health Ministers by NSW and Queensland, utilised academic literature and expert opinion to assign those with a severe mental illness into groups on the basis of similar care needs, called Care Packages. The types of community supports in these packages have substantial equivalence with the supports offered by the NDIS to date. The NMHSPF is therefore highly relevant to the task of identifying the needs of the broader population of people living with severe mental illness.
Using the NMHSPF, we can estimate that each year approximately 290,000 persons with a severe mental illness require some form of community support (individual support, group support or non-acute residential) including 180,000 adults who require individual community support. In addition there are 153,600 mental health consumers whose carers require some form of support.
We support these estimations.
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
The role and extent of outreach services to identify potential NDIS participants with psychosocial disabilities We have noted and support the submission by the Mental Health Commission of NSW (Submission
- in relation to the need for the NDIS to develop effective means of outreach to identify and provide services for hard to reach individuals and groups who are eligible for the NDIS. This outreach should be part of the core aspects of the work of the NDIA.
There are a number of reasons why some people with psychosocial disability may be hard to reach by the NDIS. These include geographical isolation, seclusion within the family or community, ignorance of services available, and negative prior experience with service providers. Individuals in this cohort often have a history of trauma which impacts on their willingness to reach out to seek assistance. Outreach activity often needs to be assertive and persistent to enable withdrawn and traumatised individuals with a psychosocial disability to develop trust over fear that this new service can be re traumatising.
We support the Commission’s statement that:
Often people with a psychosocial disability are known to a wide range of community services. The NDIA needs to tap into the existing network of government and non-government providers, including services that are not delivering specific mental health and disability support but are providing services and programs to the community such as libraries, community centres, neighbourhood centres, local councils, housing and homeless services, and charities.
The NDIA therefore needs to invest in local network forums, whether as part of outreach or through the Linkages and Capacity Building Framework, to work with these agencies to identify individuals who may be eligible for the NDIS, but for whatever reason have not been part of the cohort transitioning from state based disability services or otherwise referred.
NDIS services for participants receiving forensic disability services People with mental illness and cognitive impairments are significantly over-represented in the criminal justice system2. For many of these their involvement with the criminal justice system is due to a failure of early, appropriate services and supports. It is often not possible to separate the interacting factors of disability and disadvantage that commonly place an individual on the trajectory towards the criminal justice system. If these individuals had received appropriate psychosocial disability support earlier in their life they may never have come into contact with the criminal justice system. We believe that the information linkages and capacity building framework needs to take into consideration the development of specific early intervention capacities to identify those individuals with a psychosocial disability that may be at risk of involvement with the criminal justice system.
We support the arguments of the NSW Mental Health Commission (Submission 16) that appropriate service providers should be selected and not chosen, for the small cohort of individuals with
2 McCausland; Baldry; Johnson; and Cohen (2013) People with mental health disorders and cognitive impairment in the criminal justice system Cost-benefit analysis of early support and diversion, report for the
Australian Human Rights Commission
https://www.humanrights.gov.au/sites/default/files/document/publication/Cost%20benefit%20analysis.pdf MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
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psychosocial disability whose behaviour, arising from their disability, may pose a risk of harm to others.
This is particularly the case where a support that may be required for the protection of the community is not one that would be chosen by the individual, or where the individual’s choice of providers may not have the appropriate skill set to provide supports that are individualised but also have regard to any community safety issues. It may be that for this cohort, particular approved providers need to be identified from whom the individual can choose, to ensure that appropriate and safe supports are provided. Further, there needs to be an appropriate pathway for community safety issues to be flagged during the planning process and for others to then be engaged in the planning process to ensure that these are adequately captured and addressed in the final plan.
As we understand it, the NDIA currently stops any individualised package when an individual is taken into custody. Following a period in the criminal justice system the NDIA will only engage in planning for community based supports once the individual has a known release date, and is within 6 months of that date. However, these positions do not recognise the reality of how the majority of prisoners enter and exit the prison system.
As the Commission has pointed out
A high proportion of prisoners exiting prison have only been in custody for short periods of time. In December 2016, the average length of stay for those having been on remand was less than 7 weeks, while the average length of stay for sentenced prisoners was 7 months.3 Therefore, for the majority of prisoners, there is simply not a six month period for a planning cycle to be completed. Even where an individual is sentenced, there is often only a short period between when the sentence is imposed and their final release date, once time served on remand is taken into account.
The traditional planning cycle for the NDIS is unlikely to be able to respond appropriately and in a timely manner for many individuals incarcerated for a period in the criminal justice system. This is particularly relevant as we know for many of these individuals their pathway into the criminal justice system has been marked by a failure in service provision. Short periods of time in custody are sufficient to cause considerable disruption for the individual, including for their housing and employment, but insufficient for meaningful intervention. The NDIS should not be adding to this disruption by inappropriately cancelling all packages and making the consumer commence the process again.
We support the call of the NSW Disability Council that
Services are ‘block funded’ under the NDIS to support individuals during their transition from gaol, and while more individualised plans are being developed.
In NSW the process of integration back into the community for forensic requires both access to day supports and gradually inclusion of overnight supports outside the forensic facility. No forensic patient will be granted a conditional release date without having had supported overnight leave. Release dates are the subject of considerable uncertainty often being progressively worked toward. However, the NDIS is no longer funding overnight supports for forensic patients without a conditional release date. Without funding for supports to access activities in the community that will benefit their
MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org
recovery journey, forensic patients without other options for supervised and unsupervised leave will have difficulty integrating back into the community.
We have noted the Commissions’ arguments in their submission concerning the transfer of the NSW Community Justice Program to the NDIS. This argument is that the approach by the NDIS of requiring a date of release before assessment can begin will result in forensic patients3 being detained indefinitely. We support the Commission’s view that
There is, therefore, an urgent need for the NDIA to reconsider its stance in relation to the eligibility of forensic patients for the NDIS and to work constructively with each jurisdiction to develop pathways to support the transition of forensic patients into the community.
Jonathan Harms, CEO Mental Health Carers,
Richard Baldwin, Senior Policy Officer,
27 February 2017
3 In NSW, forensic patients are those found unfit to stand trial and those found not guilty by reason of mental illness. Although the form of order varies these prisoners are to be released into the community as soon as it is safe for the individual and the community for them to be released, otherwise they can remain detained indefinitely. MCHN Mental Health Carers NSW Inc.
Funded by the NSW Mental Health Commission
Suite 501, Level 5, 80 William St, Woolloomooloo, NSW, 2011 W: www.arafmi.org