Submission to the Joint Standing Committee on the
National Disability Insurance Scheme-
the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
One Door Mental Health
ONE DOOR MENTAL HEALTH
Executive Summary
As a grass roots community mental health organisation, One Door is well placed to provide feedback on the impacts of NDIS policy and able to provide suggestions for improvements that will make real change in the lives of those living with a mental illness. In Australia, mental health has been, and continues to be, grossly under-invested in despite the clear economic and societal benefits of investment. The NDIS is one of the most important social reforms in Australian history alongside the introduction of Medicare. It has great potential to address the critical unmet need to support those with a psychosocial disability. However, the speed at which the NDIS has been rolled out and the removal of funding for key psychosocial programs that also support those who are not eligible for an NDIS package has created a state of unprecedented uncertainty. In February, One Door was notified by DSS that the amount of funding transitioning for Personal Helpers and Mentors (PHaMs) to the NDIS will be reduced as a result of NDIS Plan approval rates being slower than expected. One Door welcomes this acknowledgement of the need to delay funding transition, however, this highlights the failure of NDIS implementation as “policy on the run”. As a consequence, One Door and many others are experiencing difficulties in achieving maintenance of workforce, clients and services to those living with a mental illness.
The current approach to implementation of the NDIS has the potential to exacerbate
fragmentation of the mental health system. It is important to move towards agile and mobile system that provides psychological continuity for consumers and carers at all levels of need. To do this the policy makers and the NDIA need to consider:
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Quarantine funding towards services for those who are not eligible.
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Communicate how emerging issues will be monitored and responded to.
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Engage with consumers, carers and organisations with established relationships with consumers and carers.
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Address the absence of interface between Health and the NDIS. One Door would welcome the opportunity to present our experiences in the appropriate forums to inform improvements to NDIS implementation.
Yours sincerely,
Dr Ellen Marks
General Manager, Advocacy and Inclusion
ONE DOOR MENTAL HEALTH
About One Door Mental Health
One Door is a specialist mental health recovery organisation, with a 31 year history, committed to improving access to services and the circumstances of people living with severe and complex mental illness.
One Door delivers trauma-informed recovery-oriented psychosocial support programs for carers and consumers. We provide psychosocial community mental health programs, specialist mental health Disability Employment Services (DES), care coordination, housing, clinical and peer supported services. Each year, 10 000 people, across 33 sites in NSW and ACT, access our services.
Many of the programs that are fundamental to our ability support people in their recovery are among those that are currently, or in-scope for, transition into the NDIS. This includes crucial services provided through the Personal Helpers and Mentors program (PHaMs), Partners in Recovery (PIR), Day to Day Living (D2DL) and Mental Health Respite Carer Services (MHR-CS).
One Door delivers services and coordinates community psychosocial care for people across silos of sectors, funding and policy through the building of relationships and trust with other providers, funding bodies and most importantly, individuals and the communities they live in.
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Eligibility criteria for the NDIS for people with a psychosocial disability;
Inconsistency in package funding levels
One Door is deeply concerned with the transparency and process of NDIS assessments and planning. Some of our clients have been accessing our services for many years, in some cases decades, therefore the depth of our understanding of their disability is significant. In some cases the level of funding in an NDIS package is inconsistent with others in our care with similar levels of disability or dependent on our involvement as an advocate in the application and planning process.
One Door believes that this arises because of one, or a combination of the following:
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The package awarded is dependent on the ability of the applicant or their carer to articulate or advocate for their needs. Many of the most vulnerable people living with a mental illness do not have a carer or advocate acting on their behalf.
- Assessors do not have an appropriate level of understanding and training in
psychosocial disability.
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Lack of previous access to health care and documentation of disability. Some of our most vulnerable clients have had little or no contact with the formal health system regarding their mental health.
- Assessment is diagnosis driven, despite assurances that they are not, with
misconceptions surrounding lack of permanence of a psychosocial disability.
Clarification of eligibility criteria is urgently needed and additional criteria should be considered as per Mental Health Australia and MIFA’s submission, which propose the addition of1,2:
Complex, severe, ongoing disabilities resulting from severe and persistent mental illness (with recent diagnostic evidence). Additional evidence might be several of—
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frequent hospitalisation for mental illness
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current or recent history of being on the caseload of public mental health services
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minimal employment in recent years
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poor physical health 1 Mental Health Australia’s Submission 1 to the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition. 2 Mental Illness Fellowship of Australia’s (MIFA) submission to the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition
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- insecure housing
- extreme social isolation
- insecure/non-existent informal carer support a. the transition to the NDIS of all current long and short term mental health
Commonwealth Government funded services, in particular whether these services will continue to be provided for people deemed ineligible for the NDIS;
Transition of funding is ahead of NDIS package approvals
Commonwealth funding for essential psychosocial services provided through PHaMs, PIR and D2DL is being withdrawn in order to fund the NDIS. Funding to these programs is progressively transitioning towards zero, with complete transition by 2019 in NSW. In 2016-17 funds for this program to One Door were cut by 7%, which will increase to 30% in 2017-18 and 71% in 2018 19.
In February 2017, One Door was notified by DSS that the amount of funding transitioning for PHaMs and PIR will be reduced by 0.9%, from 7% to 6.1%. This is an acknowledgement of a failure in implementation, as NDIS Plan approval rates have been slower than expected, resulting in difficulties for some service providers to continue to support more participants than was initially expected with reduced grant funding.
Funding for One Door to provide psychosocial programs is decreasing, yet One Door is required to continue to provide services until December 2017. These services are already inadequately funded and have significant waiting lists. Transition of funding out of these programs ahead of NDIS package approvals will result in increases in waiting lists, a reduction in the quality of services provided and difficulties in maintaining workforce.
One Door estimates that in 2016-17 alone, funding cuts will result in the loss of 8 staff, who would otherwise provide support to over 144 clients.
Quarantine funding for programs for those who are not eligible for NDIS packages
Funding for psychosocial programs including PHaMs, PIR, D2DL and MHC-RS should be quarantined as there are no replacement supports available for those who do not receive and NDIS package.
Once the funding transition is complete, these programs will cease to exist in their current form. Only those who receive an NDIS package will be eligible to receive services planned for in their NDIS package.
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The government estimates that 230,000 of the 690,000 Australians who experience mental illness each year require psychosocial support, with 65,000 with severe, persistent and complex needs3. Yet the NDIS will be available for only approximately 64,000 people living with a psychosocial disability4. Mental Health Australia’s population profiling estimates a population of 502,000 adults with severe mental illness in Australia, of whom approximately 290,000 will require some form of NDIS-like community support- 5 times the Productivity Commission’s estimate5. Such supports can be defined as “non-clinical community based services designed to assist those with a mental illness to participate in their communities and have meaningful and contributing lives.”, similar supports to those provided under PIR, PHaMs and D2DL which will no longer be available for people without an NDIS package.
The gap created in service provision by transition of PIR, PHaMs and D2DL into the NDIS is significant and little information is available as to how people will access services once the funding transition is complete. Information Linkages and Capacity (ILC) funding will not be adequate or appropriately targeted to cover this emerging gap (see point d.)
One Door estimates that between 50-75% of those accessing the PHaMs program will receive and NDIS package of an unknown amount. While recognising that this is just an estimate based on our experience, our estimate leaves a potential 25-50% of people without service.
25-50% of people, who currently have access to life-saving services, keeping them well and participating in the community, will not be eligible to receive service and there is no equivalent free service for them to access.
The impact of this is likely to be significant and wide ranging. We anticipate an increase in poverty levels, hospitalisations and deterioration of mental state and community participation for those clients unable to access the NDIS.
To ensure continuity of service for those who are not eligible for NDIS packages, block funding needs to be restored and quarantined for vital community mental health and center-based programs.
Regional and remote service provision threatened
Not-for-profit community mental health organisations provide services to the most vulnerable and in areas of need, such as regional Australia, where commercial drivers are less apparent. Survival of providers in regional areas will require current clients being eligible for NDIS packages, or attracting new clients with NDIS packages to their services. Given the constraints
3 National Mental Health Commission, 2014: The National Review of Mental Health Programmes and Services. Sydney: NMHC 4 Australian Government Productivity Commission, 2011, Disability Care and Support Draft Inquiry Report, Canberra (adjusted for population growth). 5 Mental Health Australia’s Submission 1: McGrath, D. (2016). The Implementation and operation of the Psychiatric Disability Elements of the
National Disability Insurance Scheme: A Recommended Set of Approaches
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of population density in regional areas, this is unlikely to be sustainable, resulting in market-exit of small providers and reduced access to services in regional Australia.
d. the scope and level of funding for mental health services under the Information, Linkages and Capacity building framework;
The intention of the $132 million (2019/20) ILC funding was initially thought to be to provide a ‘tier 2’ of service to ensure that those who are ineligible for an NDIS package receive service. However, it is clear that ILC is not intended for this purpose and ‘tier 2’ remains unfunded.
Instead, the ILC will form an important interface between the NDIS and mainstream services, however it is not clear how this will be achieved and how both LACs and PHNs will be involved in this process, given they have been assigned with mediating the interface with mainstream health6,7.
One Door and others8,9 do not believe that this amount of funding is adequate across all types of disability, and that the $365 million transitioning to the NDIS from psychosocial programs should be quarantined and administered through under the ILC, provided that the ILC Outcomes Framework is closely aligned with the supports provided through PHaMS, D2DL, MHR-CS and PIR.
e. the planning process for people with a psychosocial disability, and the role of primary health networks in that process;
Commonwealth guidance for PHNs states that generally, PHNs cannot commission psychosocial support services from the flexible primary mental health funding pool, with the exception of limited vocational or education support, or services relevant to suicide prevention actions10.
In addition to GP led assessments, PHNs are expected to provide additional assessment arrangements to support longer term packaged care that is the basis for a coordinated approach to the provision of clinical services, linking state-funded LHN and national NDIS assessment, regional stakeholders, state and territory services, private sector organisations and NDIS providers. In our experience, there have been little attempts at NDIS service integration
with mainstream services by either PHNs or LACs, nor do they have the capacity or
understanding of psychosocial disability to perform this function.
6The Productivity Commission. National Disability Insurance Scheme Costs Issues Paper. 2017
7 The Department of Health. PHN primary mental health care flexible funding pool. Implementation guidance primary mental health care services for people with a severe mental illness. Accessed February 2017 at http://www.health.gov.au/internet/main/publishing.nsf/content/2126B045A8DA90FDCA257F6500018260/$File/4PHN%20Guidance%20 %20Severe%20mental%20illness.PDF 8 Mental Health Australia’s Submission 1, The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition 9 Mental Illness Fellowship of Australia (MIFA)’s Submission, The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition 10 p6, Department of Health (2016). PHN Primary Mental Health Care Flexible Funding Pool Implementation Guidance: Stepped Care. http://www.health.gov.au/internet/main/publishing.nsf/content/2126B045A8DA90FDCA257F6500018260/$File/1PHN%20Guidance%20-%20Stepped%20Care.PDF
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Current LAC approach is inappropriate and ill-informed
The early experience from the Hunter trial site demonstrated a lack of understanding of psychosocial disability and consumer engagement by the NDIA. One Door has concerns with the ability and approach of LACs in the wider roll-out of the NDIS. Many of these issues are grounded in the existence of a conflict of interest, whereby the LAC is also able to offer coordination of support (COS).
Recently One Door has encountered a number of issues with the LAC approach to participants. In our experience the following issues with the NDIA, LACs and Planners are preventing people with a psychosocial disability from access to the supports they are entitled to under the NDIS:
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Lack of engagement with local providers with established relationships and trust of consumers11.
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Plans that have been approved are inadequate or inappropriate to client needs, particularly for those unable to advocate for themselves. This includes
Lack of inclusion of coordination of supports in plans. The ‘First Plan’ process does not address the level of need and merely represents a transition of funding from one program (ADHC) to another (NDIS).
- Lack of mental health knowledge/expertise of LACs and Planners (see also (a) eligibility criteria):
Insufficient consideration of episodic nature of some psychosocial disability. Poor engagement with consumers for decision making regarding their package. Lack of understanding by LACs of the anxiety and stress the application and interview process can create for a consumer. Lack of education regarding diagnoses.
4. Client distress following encounters with LACs (see also (e) “Section 55” and (g)
Outreach):
- Ineffective administrative processes: Difficult for reimbursement of self-managing participants. Inaccessible administrative processes with significant failings (e.g. the Online Portal). Lack of mechanism for registering feedback or concerns with a guaranteed and transparent response time.
11 Civil Society NDIS Statement to the Council of Australian Governments (COAG) and the National Disability Insurance Agency. Call for stronger engagement with people with disability in the NDIS. December 2016.
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There does not appear to be an alternative to or supports for the participant to use the online portal, myplace, for those that do not have access to, or are unable to use computers.
Section 55 of the NDIS Act creates a breach of privacy and trust
Section 55 of the National Disability Insurance Scheme Act 2013 (NDIS Act)12 outlines powers of the NDIA to obtain participant, prospective participant and provider information pertaining to a list of matters, including client personal contact information, diagnosis,, number of visits with the provide, if they have reasonable grounds.
This request for data is based on the assumption that all our clients are deemed to be prospective clients without their direct application or expressed wishes to be participants. This request circumvents clients from refusing the NDIA to access their personal information. This capacity to refuse has been built into the NDIS through the Access Request Form. There are a number of clients across One Door sites who are already expressing their concern that the NDIA may not honour confidentiality and Privacy matters relating to their personal information.
The approach currently taken whereby LACs appointed by the NDIA, use information obtained under Section 55 of the Act to contact clients directly, has resulted in:
Breakdown of established relationships and trust between One Door and clients, as One Door is perceived as having betrayed the clients trust by handing over their personal information. One Door is concerned that we risk great harm to our relationship with these and other clients should we proceed as requested. We are further concerned that many clients would cease to engage with both the NDIA and One Door leaving many without service and supports.
A poorly collaborative process excluding service providers who have established trust and relationships with potential participants
Direct “cold-call” LAC contact, which has been described as aggressive by some clients, and the process of application itself is distressing for clients who may lack trust in government.
The impact of this approach is to undermine the ethical basis of the reforms and to leave people
in the same disempowered, dependent and damaged relationships. Organisations with
established relationships with consumers should be funded appropriately to obtain consent of consumers prior to contact by an LAC.
12 National Disability Insurance Scheme Act 2013.
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f. whether spending on services for people with a psychosocial disability is in line with projections;
As outlined in the “Executive Summary” and (b), in February 2017, One Door was notified by DSS that the amount of funding transitioning for PHaMs and PIR will be reduced by 0.9%, from 7% to 6.1%. This is an acknowledgement of a failure in implementation, as NDIS Plan approval rates have been slower than expected, resulting in some service providers are continuing to support more participants than was initially expected with reduced grant funding.
One Door firmly believes that without intervention to restore programs for those not eligible for NDIS packages and thus prevent people from becoming unwell, significant additional funding pressures will result for both the health system and the NDIS.
g. the role and extent of outreach services to identify potential NDIS participants with a psychosocial disability; and
Outreach should be a key priority in the implementation of the NDIS- approximately 46% of Australians living with a mental illness do not access treatment services13.
Prior to the roll-out of the NDIS, outreach was a critical component of work completed by the community mental health sector through programs such as PIR, which will no longer be funded.
Funding for outreach programs should be quarantined and those organisations and service providers who are best positioned to undertake outreach in their local area should be funded to do so. Non-government organisations, such as One Door, have worked over many years to
establish trust and relationships with vulnerable communities and therefore should be
considered as key to outreach and appropriately funded to do so.
The NDIA has made little provisions for outreach beyond the involvement of LACs, whose approach to outreach is unlikely to reach those most vulnerable populations:
- Those who have anosognosia, or lack of insight (57-98% of consumers with
schizophrenia)14. This means that a person is unaware or does not believe that they have a mental illness.
- Those that are resistant to treatment due to previous trauma from the
health/disability support system, particularly Centrelink.
13 Whiteford HA, Buckingham WJ, Harris MG, et al. Estimating treatment rates for mental disorders in Australia. Australian Health Review 2014; 38(1): 80-5. 14 Buckley PF, Wirshing DA, Bhushan P, Pierre JM, Resnick SA, Wirshing WC. Lack of insight in schizophrenia: impact on treatment adherence. CNS drugs. 2007;21:129–141.
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Those who do not access formal health services. The nature of psychosocial disability means that taking the first step to access services can be extremely difficult without support.
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People who are unwell and not able to see a ‘future’ therefore do not want to engage in a process centred on goals.
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People who experience fear of change.
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People who are not able to understand why the current service delivery will not stay the same.
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Consumers who have had no contact with NDIA staff and LACs and therefore have not established a trusting relationship.
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People who don’t like or relate to the disability term – therefore will not associate with NDIS.
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Contradictory or inaccurate advice being given by LACs to clients and to our staff when they are involved
It is crucial that the NDIA, Planners, and LACs engage with current service providers and community organisations who have established relationships, trust and knowledge of the consumer in all steps in the process of assessment, planning and service delivery in order to overcome these barriers.
h. the provision, and continuation of services for NDIS participants in receipt of forensic disability services;
Funding for overnight leave for forensic consumers should be included in NDIS packages without the precondition of a release date.
In Australia, people who have been found unfit to be tried for an offence, or people who have gone through a criminal trial or special hearing and are “not guilty on the grounds of mental illness” are known as forensic consumers.
Forensic consumers are kept in a prison or a hospital for recovery and rehabilitation with the goal of integration back into the community.
In 2016 there were 403 forensic consumers in NSW – the majority of these are living in the community (conditional discharge). The remainder of forensic consumers are working towards release in high and medium secure units (Forensic Hospital (117), Bunyah, Macquarie Unit at Bloomfield and Morisset (30), Long Bay Prison Hospital (up to 40). The total number of those without conditional release is approximately 190 people.
The process of integration back into the community begins with day leave (funded by NSW health) and gradually overnight leave (previously funded by the NDIS for eligible participants).
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Overnight leave is 4- 6 nights of supervised leave. All nights can be taken in one block, or can be used gradually, for example, beginning with one night, followed by 2 nights 6 months later etc. How the consumer uses overnight leave is decided by the Treating Team in consultation with the individual.
When the Treating Team is satisfied with the progress made during overnight leave, they will submit an NOI for conditional discharge provided the consumer is ready and has the supports in place.
One Door has been involved for many years in the process of working towards community integration for forensic consumers. Costs of overnight leave require funding are minimal in cost to the government, and the savings from release of these consumers are high.
Currently the NDIS is no longer funding overnight leave for forensic consumers without a conditional release date. However, no forensic consumer will be granted conditional release
without having completed overnight leave. Without funding for overnight leave, forensic
consumers will not be able to be integrated back into the community.
It is One Door’s believe that these supports should be included in an NDIS package as they represent fundamental community supports for an individual, delivered in a community setting rather than an in-patient setting.
i. any related matter. A National Workforce Strategy needed
While the NDIS does not directly set the amount a service provider can pay an employee, the amount provided for a service under the NDIS is too low to maintain the current level of skill in the workforce. The low cost of support service items provided through the NDIS is likely to exacerbate both workforce shortages and result in deskilling of the current workforce. Provisions for basic support items allow for the attraction of only minimally qualified staff, which has potential implications for the quality of services that can be provided.
The introduction of the NDIS has resulted in large gaps in the future workforce which have implications particularly for the provision of community mental health programs, but also for allied health and clinical staff15.
The community mental health sector already competes with other industries for workforce due to the stigma associated with working in the mental health sector.
15 Community Mental Health Australia (2015). Developing the Workforce: Community Managed Mental Health Sector National Disability Insurance Scheme Workforce Development Scoping Paper Project. Sydney: Mental Health Coordinating Council.
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Strategies need to be in place to ensure minimum standards of service and career pathways in order to maintain those for whom the NDIS does not provide a wage that meets their level of qualifications.
A National Workforce Strategy should cover:
- Workforce development including minimum standards and training.
- Workforce attraction and retention.
- Workforce constraints.
- Workforce shortages. Clarity critical for interface between NDIS and Health
Mechanisms for communication and service integration at the interface of Health and the NDIS need to be carefully considered. Currently, it is not clear how treating physicians will be included in the planning and care of patients who are also accessing the NDIS and little attempts to include formal health services in education and training surrounding the NDIS.
Commitment to recovery oriented-practice
In the Productivity Commission’s Review of Human Services16, competitive processes were
identified as a significant pressure on collaboration between providers. The NDIS is
predominantly fee-for-service paid on invoice. In principle, prices for services are set by the competitive market, as is the service provided.
One Door believes that the NDIA needs to clarify how recovery-oriented practice will be included in this environment whilst maintaining choice and control for the participant17.
Funded Carer respite needs to be addressed
Across Australia, it is estimated that there are more than 2.8 million unpaid carers, and their caring role is valued at more than $60 billion each year18. Carers have been reported to have the lowest wellbeing of any group in Australian society- with poorer health, social and employment outcomes associated with foregoing employment and social opportunities in order to fulfil their caring responsibilities. The health of a carer not only impacts on their own healthcare costs, but also on their ability to care for the individual and the associated cost to the health and/or disability sector.
16 Productivity Commission 2016, Introducing Competition and Informed User Choice into Human Services: Identifying Sectors for Reform, Study Report, Canberra. 17 NDIA. Psychosocial disability, recovery and the NDIS, November 2016. Accessed on 27th February, 2017 at https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjl1ru8gK_SAhWEabwKHdFcDDsQ FggcMAA&url=https%3A%2F%2Fwww.ndis.gov.au%2Fmedias%2Fzip%2Froot%2Fh59%2Fhb4%2F8799161024542%2FFact-Sheet-Psychosocial disability-recovery-and-the-NDIS-DOCX-1MB-.docx&usg=AFQjCNGbF61mJaGVHBaLDtJl3VNv1vBIww&sig2=k3ogVb_7PHrneEQPATc uw&bvm=bv.148073327,d.dGc 18 Deloitte Access Economics (2015) The Economic Value of Informal Care in Australia 2015.
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Respite for carers is essential to maintain the health and wellbeing of carers. A number of Commonwealth funded respite programs for those caring for people with a psychiatric disability will transition to the NDIS over the next three to five years. This includes Respite Services, Mental Health Respite Carer Services, and the On Fire program aimed at young carers. Analysis by Mental Health Australia has identified at least 153,600 carers who will require some form of support19. Under the NDIS, individuals with an NDIS package can receive funding for respite for their carer, rather than the current situation where respite is provided to the carer without the need for the consumer to elect to use their NDIS package to provide respite. This means opportunities for mental health carers to be supported in their own right are decreasing. One Door has concerns for the ability of carers to access respite with this model of care. Some people with a psychiatric disability lack insight into their condition, including lack of insight for the need of respite for their carers. One Door supports the quarantining of funding for respite services from transition to the NDIS alongside the development of innovative, targeted support and inclusion of carers in the mental health system.
19 Mental Health Australia’s Submission 1: McGrath, D. (2016). The Implementation and operation of the Psychiatric Disability Elements of the