Submission 30 — Central Adelaide Hills Partners in Recovery (CAH PIR) — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition | External submission

Central Adelaide and Hills Partners in Recovery, 477–479 Regency Road, Prospect SA 5082

Ph 08 8465 7050 · F 08 8465 7053· CAHPIR@neaminational.org.au

Wednesday, 23 February 2017

Committee Secretary

Joint Standing Committee on the National Disability Insurance Scheme

Department of the Senate

PO Box 6100

Parliament House

CANBERRA ACT 2600

To the Committee Secretary

Please accept the attached Joint Standing Committee Submission on behalf of Central Adelaide Hills Partners in Recovery (CAH PIR) program for which Neami National is the Lead Agency. The submission reflects the views and recommendations garnered from an extensive consultation process across the region involving more than 140 participants representing consumers, carers and service providers.

CAH PIR is a consortium of seven organisations specialising in mental health and psychosocial rehabilitation, and welcomes the announcement of the Australian Parliament Joint Standing Committee inquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition and further welcomes the opportunity to make a submission to this inquiry.

Neami National (Neami) has a strong reputation and proven capability for supporting individuals with psychosocial disability relevant to the NDIS framework. Neami has been undergoing NDIS trials and within the last 12 months has commenced delivery of services within WA (Perth Hills trial and the WA NDIS trial), Victoria (North East Melbourne and Barwon regions) and NSW (Hunter). Neami has created a new company, Mental Health and Wellbeing Australia Limited (Me Well) for the purposes of providing services within the National Disability Insurance Scheme (NDIS).

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The most prominent themes from local consultations urge the Joint Standing Committee to pay special attention to individual’s living with mental illness ineligible for the NDIS and their Carers. The majority of people who experience mental illness will recover without ongoing disablement and need access to a comprehensive mental health service system to promote this recovery. NDIS should only be considered a component of the mental health system and not a replacement.

Please do not hesitate to contact me should you require any further information or clarification.

Yours Sincerely

Arthur Papakotsias | Chief Executive Officer

Neami National

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Submission to the Joint

Standing Committee on

the NDIS ‐ Mental Health

The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

condition

Introduction

Central Adelaide and Hills Partners in Recovery (CAH PIR) is a consortium of seven organisations specialising in mental health and psychosocial rehabilitation in South Australia‐

Neami National – Consortium Lead Agency

Life Without Barriers (LWB) – Consortium member

Mental Illness Fellowship South Australia (MIFSA) – Consortium member

Mind Australia – Consortium member Mission Australia – Consortium member Uniting Care Wesley Bowden (UCWB) – Consortium member Uniting Care Wesley Port Adelaide (UCWPA) – Consortium member.

CAH PIR welcomes the announcement of the Australian Parliament Joint Standing Committee inquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition, and further welcomes the opportunity to make a submission to this inquiry.

This submission has been collated by CAH PIR and reflects the themes arising from a series of community forums and an online survey. Over 140 people participated in these forums and the survey. Participation spanned service providers (non‐government and government), consumers and carers, all of whom are impacted in varying degrees by the NDIS.

Key Themes within the CAH PIR region

The overarching messages arising from the consultations were that while the introduction of NDIS is viewed as potentially a positive ‘enhancement’ to a continuum of services available for people living with mental illness‐

it should not be a ‘replacement’ of a coherent mental health system with a continuum of services aligned to the diverse needs of people who experience mental illness there is a strong and overarching concern regarding the impact and difficulties in transitioning vulnerable groups to NDIS where state based and federal services cease a significant concern was impressed for the group of people with psychosocial support needs that will not be eligible for NDIS packages where significant and high levels of uncertainty remains regarding the impact of state and federal services transitions into the NDIS.

It is clear to CAH PIR that not all participants in State and Commonwealth funded programs will be eligible for NDIS. For almost all mental health recovery and rehabilitation programs where 100% of funding will transition to resource the NDIS, it is evident that this funding transition does not align with 100% of consumers in these programs being eligible or able to transition to the NDIS. This leaves a large gap in service availability and has the potential to have significant unintended impacts on service systems, but mostly carers, families and communities.

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In addition, there was a concern expressed through consultations that the cessation of programs that focus on early psychosocial intervention and support could result in a worsening of symptoms for those not eligible for the NDIS, unfortunately resulting in longer term treatment, support and financial and community burdens.

Finally, from interstate experience it is a concern across CAH PIR that people living with a mental illness are likely to struggle to attain eligibility, in part, due to their reluctance to take on a ‘disability’ label. The “disability” label further stigmatises people with a mental illness and diminishes the importance of hope and recovery, which is well evidenced as critical to quality rehabilitation support. This, in addition to individuals social isolation and limited supports as well as a concern regarding limitations in the understanding of mental illness on the part of NDIS assessors/planners, creates a complex environment where the onus and pressure is on the person significantly impacted by their mental illness to articulate a case for NDIS eligibility and a package that meets their support needs.

Observations and themes from those who participated in consultations were within four key areas ‐

Impact on Carers and Families Concerns for the impact on Carers, families and communities relate to the Standing Committee ToR‐

a. the transition to the NDIS of all current long and short term mental health Commonwealth Government funded services, including the Personal Helpers and Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in particular;

I. whether these services will continue to be provided for people deemed ineligible for the NDIS; b. the transition to the NDIS of all current long and short term mental health state and territory government funded services, and in particular;

I. whether these services will continue to be provided for people deemed ineligible for the NDIS; Consultation participants identified carers as the first point of support for people with a mental illness. Many organisations stated that they defer to carer support in the absence of any other option. The forum and survey responses articulated significant concerns that carers, rather than emergency departments and hospitals would “bear the brunt” of unmet needs of those not eligible for NDIS packages.

“Carers have been well supported by PIR and there is an expectation that they should be included at the level that the consumer’s consents. Carers’ views were well considered in the establishment of PIR and are still very active on our local carer reference groups. The NDIS is very focused on the participant in the eligibility and planning phase and carers are reporting feeling left out of the process, or that there is a lack of clarity regarding their role and purpose and advocacy”.

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Where Carers face increased responsibilities of the care, this poses a high risk of significant negative results for them, their family, community and economies through impacts such as‐

Loss of employment (carer and other employment) Increased personal and financial risk due to unstable environments Stress and burnout (carers becoming ill impacting their overall health) Family conflicts and strain in relationships (stress on whole extended family – fracture of whole families) Fatigue due to no access to respite, education or support services (sleep deprivation, depression, anxiety) Needing specific expertise that services, not themselves, are always equipped with A sense of powerlessness due to their voice not being heard A loss of identity as the carer role dominates the Carers life.

“I work with parents in their 70’s, carers of a client, in her late 40’s with BPD,

Intellectual  Disability and  Schizoaffective  Disorder. The parents are  suffering

depression and are burning out, as no appropriate services are available to their daughter. The parents are providing daily support around conflict the daughter engages in. The parents are advocating for support services to come on board and as a mediator between current services and their daughter. Without support, services often reject the parents as someone they would prefer not to deal with. With support the parents have an SF (Support Facilitator) acting as an advocate and an intermediary between services and the daughter, with all the facts and knowledge of key stake‐holders”.

Ultimately these common and well documented experiences can lead to a loss of hope and carers ‘giving up’ which impacts both on the carer and results in a further negative impact for the individual living with mental illness and their recovery journey.

Person Living with a Mental Illness Concerns for the impact on people living with mental illness relate to the Standing Committee ToR‐

I. whether these services will continue to be provided for people deemed ineligible for the NDIS; Concern was raised throughout the consultations that the cessation of Partners in Recovery (PIR), Personal Helpers and Mentors (PHaMs) and Day to Day Living (D2DL) would have a significant impact on people with a mental illness. Concerns were that without quality psychosocial rehabilitation and recovery services available to suit the varying needs of people living with mental illness. The experience of the participants notes that the majority of people living with mental illness will recover with quality and individualised recovery and rehabilitation services.

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Where state and federal programs as outlined in the ToR funding transitions to the NDIS, and these vital services are no longer available, participants held significant concern this would result in people living with mental illness experiencing‐

Increased social isolation Less collaboration with services Increased homelessness, self‐harm and suicide Increased emergency department presentations Increased pressure on GP’s (in addition, if there is increased pressure on GP’s to support individuals to test NDIS eligibility, this could impact the cost of GP appointments.) Unintended consequences such as a system that promotes higher levels of dependency where more people become eligible for the NDIS due to a preventable decline in health and resulting permanent impacts on functioning Increased stigmatisation Increased burden on health system.

Well‐tailored psychosocial supports assist people to “get back on track” and avoid fractured relationships, work, and social supports, thus lessening the long term negative impact of mental health issues. When these supports are reduced or removed, people with a mental illness experience additional challenges in regaining control of and improved functioning in their life.

Ineligibility results in unmet needs Concerns regarding people living with mental illness being ineligible for NDIS and resulting in unmet needs relate to the Standing Committee ToR‐

a. the eligibility criteria for the NDIS for people with a psychosocial disability; “The needs of this group of people [who aren’t eligible for an NDIS package] are the same as the needs of the people who are eligible (housing, medical, social support, transport); the difference is, they will have reduced access to supports/services, but their needs are just as prominent”.

“Programs such as Better Access and ATAPS will not provide holistic support for psychosocial disability”.

The impact of bilateral agreements between State and Federal governments that result in the “cashing out” of significant components of a coherent mental health system in South Australia for people experiencing mental illness requiring episodic quality support (not likely to be permanent) was a significant theme. Consultations revealed a prevailing view that a healthy mental health system continues to require investment in‐

Community based rehabilitation and recovery services Support with service co‐ordination and system navigation Access to appropriate accommodation options Advocacy and case management One on one short term coaching/mentoring Peer/lived experience services

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Social connections/support Financial literacy/budgeting support Support for families/carers Responsive and timely intervention Life skills training and support.

Questions arise as to the adequate availability of services to support individuals to test their eligibility. As programs like PIR, PHaMs and D2DL cease (or have significant waiting lists) the ability of the community sector to provide this support for individuals is significantly compromised. There is a significant consistent concern that many people are disadvantaged and disenfranchised as they require and do not have the support to test their eligibility for NDIS or to navigate the mental health system.

In South Australia, there is still considerable uncertainty about the current SA Health funded rehabilitation and recovery services not available through the NDIS. The landscape is unclear in relation to what can/will be available, and who will provide these services (State, PHN, NGO etc.).

Other unintended consequences Other concerns regarding the unintended consequences of NDIS design in relation to people living with mental illness relate to the Standing Committee ToR‐

a. the scope and level of funding for mental health services under the Information, Linkages and Capacity building framework;

Information, linkages and capacity building (ILC), has a stream for individual capacity building which is prioritised for people living with a disability who do not have an NDIS plan. Supports within this stream are likely to be one‐off, of low intensity and/or episodic. Without considering people not eligible for the NDIS, service gaps are likely to arise with people not receiving services relevant to their needs result in higher utilisation of (avoidable) expensive systems such as emergency departments and inpatient units.

Additionally, specific to South Australia, there is a high level of concern for the Centre for Disability Health at Modbury. The Centre for Disability Health is the only service available to individuals living with comorbid intellectual disability, cognitive disability and a mental illness. This service provides dual support for adults and children and is currently unknown if it will continue within the South Australian roll‐out of NDIS. There is significant concern that there will be a major impact if this service does not continue.

Those consulted expressed an ongoing need for Supported Residential Facilities (SRF’s) as these provide unique, specialised accommodation, supervised care, medication prompting and administration which the NDIS care models do not cater for. SRF’s are currently outside the NDIS arrangements for accommodation and support. It is the view of participants that people in SRFs are not going to fit into the expectations and environments provided by small group homes as outlined in the NDIS. A loss of SRF’s will expose 1,100 people to homelessness in the very short term.

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“Samuel 23, has large levels of functional impairment that severely impact his life in ways that inhibit his ability to do shopping, pay bills, and maintain personal hygiene. Previously to the NDIS Samuel could be referred to PHaMs to help him develop the skills to be able to manage the areas of his life that he struggles with. Because Samuel was not deemed as having enough of a functional impairment he was rejected for an NDIS package and is no longer eligible for PHaMs, whereas in the past he would have been a prime candidate. What service exists to replace PHaMs? And most importantly what exists to provide Samuel with an opportunity to access the essential supports that he needs to return to a more functional life?”.

It was the view of participants that the new system architecture, within the NDIS context, must also ensure that 24/7 intensive living support including personal care, illness management (behavioural, mental, social, physical, intellectual) continues.

CAH PIR CONSULTATION RECOMMENDATIONS

With the concerns outlined above in mind, CAH PIR participants shared the following recommendations for the Joint Standing Committee to consider‐

Re‐consider the roll out of mental health under the NDIS until it is fully understood what is needed; that is, keep established services until we can see how the NDIS operates in practice and identifies gaps, what works and what doesn’t work.
Consider programs such as PIR, PHaMs and D2DL as an ongoing ‘gateway’ into the NDIS, undertaking assessment and determining ‘package’ requirements, as well has providing system navigation for people who will not fit the requirements or need a lifelong NDIS service.
Federal and state services that are currently funded are best placed to continue to support individuals living with mental illness and their carers who will not be eligible for NDIS and require a service beyond “primary mental health services” available through PHNs, the system should continue to resource these programs.
Consider the need for ‘drop‐in’ and short‐term one‐to‐one advocacy and referral services for people living with mental illness and their families.
Continue the Supported Residential Facilities subsidy alongside NDIS.
NDIS is only one part of a whole system reform, but it is evident it is requiring organisations to invest “all their time into this” at the expense of other important reforms, re‐balance the discussion and focus across the sector.
Participants understood NDIS is an insurance model, however, there were concerns there was limited or no promotion or information from the NDIA and that the website is not user friendly. This needs attention and focus in South Australia.
Consideration should be given to either funding services appropriately to undertake the work required to support people to test their eligibility or require the NDIS to be more proactive in engaging of services, consumers and carers. It was felt that after investing significant amounts of state and Commonwealth investment into the NDIS, non‐government services ‘do all the work’ to identify and support clients to test their eligibility.

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Retain PIR or components of this service to offer transitional packages of support to people who are either having difficulties testing their eligibility for the NDIS , or for those who have been seen as not eligible due to lack of evidence of long term (life‐long) disability. Care coordination and packages should be available to purchase time limited psycho‐social services. Services could also be purchased from NDIS providers at the NDIS rates. These services should be recovery focused and the coordination would assist consumers to navigate into stepped care mental health services provided through PHN and the existing State mental health services.
The system needs to also maintain a proactive assertive outreach approach, where people can access ILC or test NDIS eligibility, in a combined system, where individualised and block funding will ensure the needs of people with a mental illness continue to be met and address some of the NDIS implementation challenges.

Conclusion

“Psychosocial support is a very flexible term; but this support does help improve consumer’s mental health, functioning/day to day living, and improve their relationships, health, and ability to participate in a meaningful life. That’s very important for social inclusion of people with mental illnesses, because every person should be able to live a life they find meaningful”.

Continuity of and a mental health system that provides a coherent continuum or responses relevant to the diverse needs of individuals, families and carers cannot and should not be replaced by the NDIS. It is essential that there is continued investment in psychosocial recovery and rehabilitation services based on the recovery model, an approach that is well evidenced to have the greatest impact on promoting independence, community participation and health and wellbeing with people living with mental illness.

CAH PIR encourage the Joint Standing Committee to consider the data and evidence that notes that the majority of people who live with a mental illness will recover. With a well‐designed mental health system that promotes recovery and rehabilitation, a minority of people will experience disability as a result of them living with mental illness. As we progress towards full NDIS roll‐ out/implementation we continue to need supports that enable people living with episodic or complex issues associated with their mental illness to promote full participation in the everyday life of the community.

“Having access to recovery‐oriented, mentoring style program that will assist people to develop their personal capacity to manage and flourish independent of an NDIS package in the community”.

“The most important need is for there to be open and honest admission that services will be cut and that supports will not be available”.

Most importantly, we urge the Joint Standing Committee to pay special attention to individual’s ineligible for the NDIS and their families and carers to ensure there are no service delivery gaps.

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Kim Holmes         Kyp Boucher                Natasha Miliotis

State Manager        Area Operations Manager      Chief Executive Officer

Neami National          Life Without Barriers (LWB)    Mental Illness Fellowship SA (MIFSA)

Irene Debreceni Adam Sherwood

Area Manager Regional Leader for South Australia

Mind Australia Mission Australia

Fiona Kelly Paul Creedon

Acting Chief Executive Officer Manager, Community Mental Health

Uniting Care Wesley Bowden (UCWB) Uniting Care Wesley Port Adelaide (UCWPA)

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