Contact:
Joanne Toohey
Chief Executive Officer
The Benevolent Society
Level 1, 188 Oxford St
PO Box 171
Paddington NSW 2021
- Introduction The Benevolent Society welcomes the opportunity to contribute to the Joint Standing Committee on the NDIS’ inquiry into the provision of mental health services under the NDIS for people with psychosocial disabilities.
The Benevolent Society strongly supports the NDIS and is pleased to have recently been announced as the new provider of Specialist Disability Community Support teams for New South Wales. We are extremely excited about managing disability support teams made up of over 700 highly skilled clinical and allied health staff who work across NSW providing services to people with disability in group homes and in the community.
This submission is based on The Benevolent Society’s experience providing mental health services to clients across New South Wales and Queensland. We have experienced funding cuts to our services on the presumption that clients will transition to NDIS, and we are witnessing the difficulties clients are having in terms of eligibility and access to the NDIS. Transition is slow, if it happens at all, and the scale of the funding cuts do not reflect the pace of the transition of clients from existing services to the NDIS.
The Benevolent Society is concerned about several aspects of the transition process and the ongoing availability of services for people with psychosocial disabilities who do not qualify for support under the NDIS yet need access to services to support them through daily life.
According to Mental Health Australia there are up to 280,000 consumers and 89,000 carers who fall outside of the scope of the NDIS but will still need community‐based mental health support1. The Benevolent Society is concerned that these people will fall through the gaps if improvements to arrangements for access to NDIS for people with psychosocial disabilities are not improved and continuity of support arrangements are not in place for those who are deemed ineligible.
The Benevolent Society encourages the Federal Government to clarify the extension of the NDIS to psychosocial disabilities and for Federal and state governments to continue to fund services outside of the NDIS to ensure that people do not miss out on essential support and services that enable them to function and thrive in the community notwithstanding their mental health issues.
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About The Benevolent Society The Benevolent Society is Australia’s first charity. We’re a not‐for‐profit and non‐religious organisation and we’ve helped individuals, families and communities achieve positive change since
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We help families, older people and people with a disability live their best life, and we speak out for a just society.
1 National Mental Health Australia, Position Statement (Draft), Key actions to ensure continued access to community support for people affected by sever mental illness during NDIS transition and beyond, accessed at https://mhaustralia.org/sites/default/files/docs/draft_position_paper_on_community_support_during_ndis_t ransition_and_beyond.pdf
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Snapshot
The Benevolent Society is a secular non‐profit organisation with 943 staff and 573 volunteers who, in 2015/16, reached 46,956 people through our services, community programs and events. We deliver services from 63 locations with support from local, state and federal governments, businesses, community partners, trusts and foundations. We support people across the lifespan, delivering services for children and families, older people, women and people with mental illness, and through community development and social leadership programs. Our revenue in 2015/16 was $111.7 million.
The Benevolent Society provides mental health services to more than 800 clients across New South
Wales and Queensland through programs such as Personal Helpers and Mentors (PHaMS); Partners in Recovery (PIR); headspace; Family Mental Health Support Services and See Me Hear Me with a mix of Federal and state government funding.
- Response to the Terms of Reference We are concerned about the transition of services for people suffering a psychosocial disability under the NDIS and the ongoing provision of services for people who do not qualify for support under the NDIS for a number of reasons, including:
a) eligibility and access for the NDIS The NDIS funds ‘reasonable and necessary’ supports for Australians with permanent and significant disability (a disability that substantially reduces their functional capacity or psychosocial functioning).
There are no specific eligibility criteria under the NDIS for people with psychosocial disability‐ they just must meet the general eligibility criteria that apply to all NDIS participants. That is, they must meet age and residency criteria and have a permanent and significant disability.
However, there are issues with the application of the eligibility criteria to people with psychosocial disabilities. The first issue relates to the ‘permanency’ criteria and how it is understood and applied in the context of mental health where the emphasis of current therapeutic approaches is on recovery.
Feedback from our clients and staff of our mental health services who have a lived experience of mental illness and recovery have noted that the access request form and process for determining eligibility is not strengths based which is inconsistent with Recovery Oriented Practice. This poses a risk of undoing development and practice advancements achieved within the sector over the last decade.
In addition, many mental health issues are ‘episodic’ in nature, so whilst they have a permanent and debilitating effect on a person’s ability to live their life and engage freely in the community, and require ongoing support, it is not clear if they will meet the NDIS threshold for a permanent disability. We also have concerns that the NDIS planning process will be unable to accurately measure and plan annually for needs which are sporadic in nature.
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Standard documentation for the NDIS is tailored to people with physical and intellectual disabilities and is difficult to interpret to reflect issues facing people with mental health problems. GPs and psychiatrists can modify the questions in the form to align better with psychosocial needs but some are not aware that they can do this or are refusing to do so, which leads to Access Requests being rejected. There appears to be a general lack of knowledge of the NDIS and the transition of mental health services amongst medical professionals. GPs and psychiatrists are an important part of the access journey to the NDIS for people with psychosocial disability. However, they need more information about the NDIS generally, and on what ‘likely to be permanent’ and ‘likely to need support throughout their lifetime’ means in the context of mental health. The Benevolent Society has clients whose NDIS Access Requests have been refused on the basis of the GP reports which can contain just one or two sentences.
The Benevolent Society encourages the government to raise awareness of the NDIS amongst the medical profession, and the important role of medical professionals in terms of access to the NDIS, particularly in the context of patents with psychosocial disabilities.
The age of our clients is also a factor in their eligibility for ongoing mental health support under the NDIS. The age related eligibility criteria for PHaMS is 16 – 99 years of age. The Benevolent Society is therefore currently providing support to people over 65 in these programs. As people over 65 are not eligible for access to the NDIS, these people will now have to look to the aged care sector for their support, even though their support needs relate to their history of mental illness rather than their age. Currently, few aged care providers are providing this sort of specialist support, particularly to people in the lower age ranges, and there do not seem to be arrangements in place to support these clients once funding for PHaMS ends and the program is fully transitioned into the NDIS.
Access to services under the NDIS for people living in remote and regional areas continues to be an issue. In these early stages of the NDIS, the market has not yet grown to meet the emerging needs of the sector, so in many isolated areas there are few if any providers of the mental health services people need. Service providers may need to travel large distances to meet the needs of all clients. Currently, the arrangements to compensate providers who need to travel large distances to consumers are inadequate.
Case study:
The Benevolent Society provides services to a child with complex needs within a family whose needs are also very complex. The family have been unable to find a service provider in their area who can provide the support they need, so The Benevolent Society makes a 230 km round trip to support the family. Under current criteria, the annual travel claim cap would be exhausted in 3 visits but there is no other organisations nearby that can meet the family’s needs or which the family wishes to work with.
Overall, The Benevolent Society recommends that the government clarify the eligibility criteria for access to the NDIS’ regarding people with psychosocial disabilities.
b) Lack of recognition of mental health issues for new participants under NDIS The Benevolent Society is concerned that mental health is not prioritised under the NDIS, even for clients who have plans approved. Where mental health diagnoses have been accepted as part of a dual diagnoses alongside recognition of a permanent physical disability, we are concerned that often mental health needs are not adequately reflected or addressed in their NDIS plan – even when their mental health support worker has been present at the Local Area Coordinator (LAC) meeting.
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As the LAC works with the client on an assessment and the assessment then goes to a planner, who in many cases does not actually meet with the client, to generate the plan– it is not surprising that all of a clients complex needs may not be met through the plans when they are issued.
To provide effective support to people with psychosocial disabilities under the NDIS requires all of the people involved in assessment and planning to have a good understanding of the long‐term impacts that enduring mental health problems can have on an individual’s functioning. In our experience, this has not been the case so far.
In the few cases where clients with mental health issues do get access to the NDIS and get issued with a plan, they may have funding under their plan but need help to find someone to support the plan’s implementation. Put simply, often people just don’t know what they have to do with an NDIS plan and don’t know how to get started. There is also inconsistency across plans as in some cases the plans that are issued do not necessarily reflect the needs of the individual client.
Case study:
The Benevolent Society has one client Jane*2 whose plan includes $7,000 for support coordination and only $4,000 for services to assist ‘improved daily living’ which is where she needs the most support. In comparison, another client Barry, is wheel‐chair bound and has severe mental health issues and will need significant support to coordinate his services needs and implement his plan. Barry’s plan includes $90,000 for services but only $1,000 for support coordination.
We also have a client family with two plans that were issued in May 2016 but they did not access a service until December 2016 due to the complexity of navigating the system and accessing supports, including psychosocial supports for a child in the family.
c) Safeguarding services The Benevolent Society is concerned that notwithstanding its intended benefits, the NDIS could unintentionally result in a shortage of services for people with psychosocial disabilities who do not qualify for support under the NDIS.
Funding has been redirected from existing mental health programs such as PHaMS into the NDIS before clients from those programs have been transitioned to the NDIS‐ meaning that service providers such as The Benevolent Society still have the same number of clients, but have reduced funding so are unable to provide the breadth of services we have been providing (see full discussion of our experience with PHaMS below).
As a result, funding has been transitioned from other programs into the NDIS, but the clients of these programs are not getting approved for support under the NDIS‐ creating a funding black hole for mental health services.
Mental Health Australia recommends that the government should postpone plans to “roll in” and wind down programs which wholly or partly serve target groups ineligible for NDIS until the implications for individuals and families are known.3 It also recommends maintaining programs like
2 * Pseudonyms have been used instead of clients actual names 3 Mental Health Australia, Incoming Government Brief, 13 October 2016, accessed at https://mhaustralia.org/sites/default/files/docs/mental_health_australia_‐_incoming_government_brief_‐ _august_2016.pdf
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PHAMS, PIR etc outside of the NDIS to provide services to those people who do not meet the NDIS criteria. The Benevolent Society agrees with those recommendations.
d) Slow transition of PHaMS clients National Mental Health Australia warned the government that while the NDIS is rolling out, ‘there is a risk of significant fluctuations in provider income’. This has certainly been the case for The Benevolent Society as our experience with PHaMS funding attests.
Funding for the NDIS is intended to come at least in part, by moving existing mental health programs into the scheme. The federally funded PHaMS is one of the programs which has been de‐funded on the assumption that clients would transition from that program to NDIS.
Funding for providers of PHAMS, including The Benevolent Society, was cut at short notice by almost thirty percent on the assumption that clients of PHaMS would transition to the NDIS, however to date the transfer has not occurred at the scale or pace anticipated when the program funding was reduced. The Benevolent Society has almost 400 clients under the PHaMs across NSW and Queensland, but as yet we only have approximately 18 clients signed up to the NDIS.
As a result, The Benevolent Society’s funding has been cut, but demand for the service remains the same and we have the added pressure of assisting clients to navigate through the complex NDIS system.
Whilst access to the NDIS is based on an assessment of individual needs, there are reasons why the transfer of PhaMS clients to the NDIS has been problematic. The NDIS requires clients to have a defined condition or be a recipient of defined services in order to get automatically recognized and transferred to NDIS. If clients are not currently receiving an existing defined service they need to register as new participants for NDIS.
All mental health clients in programs transitioning into the NDIS are considered to be ‘new participants’, along with any people with newly diagnosed or acquired disabilities. The bilateral agreements define the number of ‘new participants’ who will be accepted into the scheme per annum. The NDIA has indicated to us that mental health consumers are the lowest priority for new participants.
We are concerned about the capacity of the scheme to accept large numbers of new participants, and that there is a significant danger‐ based on current experience‐ that funding for PHaMS in particular will end before these clients can be transitioned. In addition, the current cut to the funding of the service means that we are less able to support our existing customers.
It remains unclear whether PHaMS will continue while clients transition to NDIS and will continue for clients who are found to be ineligible for NDIS. The uncertainty around continuity of funding and services is causing anxiety amongst the mental health sector workforce who are concerned about job security. As the demand for experienced disability support workers will grow as the NDIS rolls out, there is a risk that these workers may seek jobs in other areas and leave a shortage of experienced staff in the mental health sector.
Mental Health Australia recommended that the Commonwealth government guarantees that for the period of transition, existing Health and DSS funded service providers in programs being rolled into
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the NDIS receive at least the same amount, that they received prior to the NDIS roll out to ensure that service providers have the certainty to invest in the future’.4 We would encourage the Government to strongly consider this recommendation.
e) Lack of information on the transfer of mental health services under NDIS for service providers and clients
There has been little information about the transfer of mental health services, particularly PHaMS, into NDIS. The Benevolent Society has attended numerous information sessions about the NDIS, but has found that sessions with NDIA rarely include representatives from DSS or the Department of Health and NDIA staff have been unwilling or unable to answer questions about mental health services. Consequently, we have been unable to receive feedback on our queries and concerns regarding the rate of transition of our PHaMS clients and the continuity of support arrangements for those who are deemed ineligible for the scheme.
Transition of participants in PIR via the ‘in kind’ processes has been smoother in a sense, as there has been more information about how this will happen and the process has largely been managed by PIR Lead Agencies.
However, given the lack of guidance to the mental health sector, we have concerns about how this transition will play out once the funding for these services is released from the in kind arrangements. At present it appears that NDIS clients are
Currently our experience is that some staff from support facilitation organisations now providing support coordination in the NDIS do not have access to the NDIS portal, and that many service agreements are between the client and the Lead Agency, not the organisation providing the service.
Most of our PIR clients do not have any documentation naming The Benevolent Society as their provider, even though their relationship is with TBS rather than the Lead Agency. We believe this will be challenging once funding for PIR ends – Lead Agencies have been able, through the in kind arrangements, to position themselves to retain all their clients at this point with little clarity about how it might be possible for other organisations who are actual service providers to do so.
Communication between NDIA and clients has also been inconsistent. In many cases, clients have been advised by the NDIA staff that they are not eligible for a plan, but have not received written evidence of the decision. Clients are also not supplied with information on the appeal process if their application has not been successful. In some cases, clients have complained that LACS are not available to answer questions after plans have been completed, even though they are required to provide 10 hours of Support Connection to the client. Clients are not given phone numbers to contact LACs or Planners but instead have to rely on the LAC or Planners to contact them. For people with psychosocial disabilities‐ this lack of information can be quite unsettling.
Case study:
The Benevolent Society has a client who completed an NDIA Access Form, with supporting letters from a psychiatrist, psychologist, GP, PHaMS worker and PIR Support Facilitator and submitted it by email on 8 December 2016. Four phone calls were made on behalf of the client between December 2016 and February 2017 requesting written confirmation of the outcome of the application. On 20 February 2017 the client was advised by email that the actual letter outlining the decision could not
4 Mental Health Australia, Letter to Hon Christian Porter MP, 19 May 2016, accessed at https://mhaustralia.org/sites/default/files/docs/the_hon_christian_porter_mp_‐ joint_letter_regarding_pc_review_of_the_nd.pdf
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be uploaded, and a summary of the letter was sent to the client which noted the reasons why the consumer did not meet the criteria. Our client still has not received the formal letter advising of the rejection of her application and has not been provided information on any avenues to appeal the decision. The Benevolent Society is concerned for the client as community mental health support stabilises her mental health issues and reduces the number of episodes she has. The client is socially isolated and lives alone. Without ongoing support, we fear she may no longer leave her house and her condition may deteriorate.
- Conclusion The Benevolent Society believes that everyone eligible under the NDIS Act should be entitled to reasonable support. Given that mental health has not been prioritised under the roll‐out of the NDIS so far, as evidenced by the pace and process for people with psychosocial disabilities, we are concerned that people with psychosocial disabilities will not all receive the support they need‐ either under NDIS or through the continuation of existing services outside of the NDIS such as PHaMS.
There is little clarity about whether the financial responsibility for these people will rest with the federal or state government. We are concerned that there are approximately 280,000 consumers who will fall outside of the NDIS but will need community‐based mental health support to participate in, and contribute to the community, but may fall through the gaps if availability and accessibility of support for people with psychosocial disabilities under the NDIS is not clarified.
To provide greater certainty for people who suffer from psychosocial disabilities and service providers, The Benevolent Society encourages the Government to:
a) Clarify its commitment to providing support for people with psychosocial disability under the NDIS;
b) Clarify the eligibility criteria for access to the NDIS’ regarding people with psychosocial disabilities;
c) Ensure that mental health issues are given sufficient weight under NDIS plans; d) Provide more information on the NDIS and access process to medical professionals; e) Reduce funding cuts for existing mental health services such as PHaMS and commit to providing ongoing support for people suffering psychosocial disabilities outside of the NDIS for those who do not qualify.
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