NDIA Accountability Project

Submission 48 — BEING — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition

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

Joint Standing Committee on the NDIS

27 February 2017

BEING

BEING is the independent, state-wide peak organisation for people with a lived experience of mental illness (consumers). We work with consumers to achieve and support systemic change.

BEING’s vision is for all people with a lived experience of mental illness to participate as valued citizens in the communities they choose. Participation is a fundamental human right as enshrined in Article 25 of the International Covenant on Civil and Political Rights (ICCPR). We work from the premise that the participation of consumers results in more effective public policy and facilitates individual recovery.

Our work is guided by eight principles:

 Principles of recovery underpin all our work  Recognition of the importance of a holistic approach  Collaboration and team work  Flexibility, responsiveness and innovation  Consultative and participatory processes that have consumers at the centre  Promoting equity and positive images to address discrimination and prejudice  Accessible and approachable for all  Promotion of professionalism and quality practice

BEING is an independent non-government organisation that receives core and project funding from the Mental Health Commission of NSW.

Find out more at http://www.being.org.au

501 / 80 William Street This submission was compiled on behalf of BEING by:

Woolloomooloo NSW Jaime Comber, Policy Officer

2011 Kirsten Gibbs, Policy Officer

Elena Sutcliffe, Policy Officer

ABN 82 549 537 349

Acknowledgements

P: 02 9332 0200 BEING would like to thank the people who have generously shared F: 02 9332 6066 with us their experiences and views. E: policy@being.org.au Cover photo: Original photo by Kirsten Gibbs - BEING

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Table of Contents

Introduction ………………………………………………………………………………………………………….. 3 Eligibility criteria for the NDIS for people with a psychosocial disability. …………………………….. 3 The transition to the NDIS for 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) …………………………………………………………….. 5 The transition of the NDIS of all current long and short term mental health state and territory funded services ………………………………………………………………………………………………………. 6 Whether these services will continue to be provided for people deemed ineligible for the NDIS ………………………………………………………………………………………………………………………………….. 7 The scope and level of funding for mental health services under the Information, Linkages and Capacity building framework …………………………………………………………………………………………. 8 The planning process for people with a psychosocial disability, and the role of primary health networks in the process …………………………………………………………………………………………….. 9 The role and extent of outreach to identify potential NDIS participants with a psychosocial disability ……………………………………………………………………………………………………………………………… 11 The provision, and continuation of services for NDIS participants in receipt of forensic disability services ……………………………………………………………………………………………………………….. 12 Summary of Recommendations …………………………………………………………………………….. 14

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Introduction

BEING would like to thank the Joint Standing Committee for providing the opportunity to give feedback regarding NDIS provisions for people with psychosocial disability.

The NDIS represents a fundamental change to the way service provision is carried out in Australia for people with a disability, including people with mental illness resulting in psychosocial disability. BEING supports people with psychosocial disabilities being able to access the NDIS and has heard some positive reports from people once they have become participants. However, other consumers, carers and support workers have reported multiple issues that have arisen during the implementation phase. The issues raised in this submission, and the recommendations coming out of it, primarily come from a survey of NDIS participants and applicants, non-participants, carers and support workers carried out by BEING in January 2017.

Eligibility criteria for the NDIS for people with a psychosocial disability.

We have found that attitudes towards eligibility criteria and the application process varied depending on the level of support applicants received from advocates and National Disability Insurance Agency (NDIA) staff. Applicants without support workers experienced the process as confusing and time-consuming. One survey respondent said:

No idea how to apply, no clear information about who to contact for more information, no clear guidelines on eligibility and no transparency about how services are allocated. I am concerned that I will be deemed ineligible because I’m not currently receiving services, but I haven’t known how to access them before the launch of the NDIS.

  • Applicant, 2017 Applicants with support find the process more straightforward to navigate. Some important features of good support include a person who has time, is respectful and helpful, and has knowledge of psychosocial disabilities. However, being able to apply for the NDIS should not depend on already having support services or an advocate. BEING recommends that the application process be simplified, with clearer forms and clearer requests for information from service providers or treating practitioners. We also recommend that people with psychosocial disabilities have access to NDIA staff who have training in mental health.

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BEING understands that the assessment and planning tools used by NDIA planners for psychosocial disability are based on assessment tools originally designed and tested for people with intellectual disabilities1. This is reflected in the NDIS application form, which lists a number of assessments and reports that can be provided, none of which assess psychosocial disability. Several respondents to our survey commented that the assessment and planning process was not suitable for people with psychosocial disability and did not reflect the issues that people living with mental illness face.

We note that some of the language used in the NDIS application process does not reflect recovery principles and is not appropriate for psychosocial disabilities. Particular issues arise with the “lifelong” criterion, which does not encompass the experience of consumers with fluctuating levels of illness, and works in opposition to one of the goals of the recovery model to maximise personal well-being. One side effect of this has been confusion for GPs, psychiatrists and other health professionals, who complete forms incorrectly or do not want to engage in the process. One support worker told us:

The language in the NDIS and the access request form is not suitable for people with mental illness. It has been very difficult to articulate their needs and barriers in the forms that were not designed with mental health in mind, and the language is not recovery oriented, which has been distressing for the clients and challenging for recovery minded professionals.

  • Support worker, 2017 One recurring problem appears to be difficulty reaching NDIA staff. Many survey respondents commented on the long phone hold times, the long wait to find out application results, and NDIS planners not returning calls.

People living with mental illness have also reported a high level of fear of being found ineligible and losing services. The cumulative effect of all of the above is a high level of stress, which is detrimental for a person’s recovery journey. Several people recommended a separate NDIS approach for people with mental illness:

1 Smith, T., (2015). Further Unravelling Psychosocial Disability – Experiences of the National Disability Insurance Scheme in the NSW Trial Site: A Mental Health Analysis. Mental Health Coordinating Council, Sydney. p67.

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We need a new stream of the NDIS particularly for mental health - and the assurance of services for individuals experiencing episodic mental illness and those who will recover within a few months or years should still be able to access services such as transport, transport training, support workers, transitional care, ongoing counselling etc. There should be a separate access request form for psychosocial disabilities- with appropriate language. There should be staff in NDIS trained for psychosocial. There should be clearer criteria and pathways for the application process.

  • Support worker, 2017 Recommendations:

  1. Application process to be simplified so that people without support have an equal ability to apply.

  2. NDIS assessments should use assessment tools designed specifically for people with psychosocial disabilities.

  3. NDIA workers to be trained in psychosocial disability and help applicants navigate the process.

The transition to the NDIS for 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)

BEING has concerns about the transition of services to the NDIS, and the effect the transition is having on people with mental illness. The move to the NDIS has been a long process, with the Hunter trial beginning in 2013, and the last regions moving to the NDIS July 2017. BEING has found that, due to the long timeframe, many people with a mental illness have been anxious about the change, and how it will affect the services they receive.

Many respondents to BEING’s survey informed us that people currently with PIR and PHaMs are losing support, with one person stating the services “have only been about completing the NDIS documentation. Other roles seem to have dropped off.” Support workers are spending anywhere between 40 and 120 hours on each NDIS application: working with clients to complete the forms, gather documentation, attend planning meetings, follow up with additional documentation, and assist with service selection.

Support workers have told us that this focus on preparing clients for the NDIS is coming at the expense of consumers’ recovery journeys. For some the application process can take months. People are losing vital supports before they are able to put their plan in place and regain the service, which is causing distress.

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The majority of respondents to our survey felt that service provision had worsened during the transition, which has been backed up by the findings of the Flinders Evaluation report2, and many were concerned about the impact this would have on people with mental illness who require support. Several consumers felt services had become very focused on money and cost, when previously they seemed more support focused.

Some participants and support workers wanted services such as peer advocacy and mentoring, psychology, psychiatry, and occupational therapy to be included in NDIS individually funded plans. There appeared to be confusion about when these services could be included and when they could not.

Recommendation:

  1. NDIA to ensure that people with mental illness continue to receive support services until individually funded NDIS plans are put into place.

The transition of the NDIS of all current long and short term mental health state and territory funded services

The concerns raised above regarding the impact of the transition on Commonwealth funded services, such as PHAMS and PIR, also apply to services funded by state and territory governments. BEING has been told that Home Care services have been reduced, with no new referrals being accepted, and existing clients’ services also suffering. The lack of community transport services and respite services was raised by a number of respondents. The services as they existed before are no longer available, and new services being put into place are expensive, even for those people with NDIS packages. One respondent raised the issue of Hoarding and Squalor programs being suspended. This has resulted in relapses for some individuals, as well as putting people’s tenancy and housing situation at risk.

Recommendation:

  1. The NDIA to ensure that important services, such as community transport, respite care, hoarding and squalor programs, and home care, are available as options under the NDIS.

2Mavromaras, K., Moskos, M., & Mahuteau, S. (2016). Evaluation of the NDIS: Intermediate Report. National Institute of Labour Studies. Flinders University. Adelaide.

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Whether these services will continue to be provided for people deemed ineligible for the NDIS

In relation to Commonwealth, state and territory funded services, BEING is concerned about the potential for people with a mental illness to fall through the cracks and miss out on important support services. Despite the NDIA advising that there would be a guarantee of service until July 2018 for people who are not eligible for the NDIS to ensure they are not disadvantaged3, BEING has been told by many consumers, carers and support workers that this is not the case, with many respondents seeing people “falling through the gaps”.

Some consumers are already being turned away if PIR or PHaMs believes that they will not be eligible for the NDIS. Other mental health services are also ceasing intake or phasing out non-NDIS participants.

The feedback BEING has received, both in our recent survey and past work with consumers who are PIR or PHaMS clients, has always been that they provide a much needed service in their lives. Many feel that without those services supporting them, they would not be as far along in their recovery journey, and would likely be using more acute services.

A recent project undertaken by BEING involved interviewing consumers, five of whom were PHaMs or PIR clients. The support they received from their workers ranged from bi-weekly, weekly, or twice weekly visits (where they would receive assistance with day to day living, arranging appointments, and navigating paperwork for Centrelink) to attending support groups, and activity groups run by PHaMs or other services under the PIR umbrella.

For one of these consumers, his local PHaMs program had undergone staffing changes, and his mental health had suffered due to losing his support worker. His depression had worsened, and his thoughts of suicide had increased. He was very concerned that the service would cease altogether. Another consumer stated that, “I get extremely strong emotional support [from PHaMs] and I wouldn’t be sitting here today if it wasn’t for these guys”. She told BEING that she would be devastated if she lost PHaMs as they are her only support. She is currently in the process of applying for the NDIS, with the help of her support worker, and is very anxious as to whether

3 Smith, T., (2015). Further Unravelling Psychosocial Disability – Experiences of the National Disability Insurance Scheme in the NSW Trial Site: A Mental Health Analysis. Mental Health Coordinating Council, Sydney. P8.

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she will be eligible and what it will mean for her if she is not. These sentiments were echoed by all the consumers who were interviewed.

It is clear that PHaMs, PIR, and other services are incredibly important for people with mental illness including psychosocial disability. BEING is very concerned about what will happen to those people if they are found to be ineligible for the NDIS if these services close down.

Recommendation:

  1. Services such as PHaMs and PIR, and other commonwealth, state or territory funded services to remain available for non-NDIS recipients.

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

BEING supports the goals of the Information, Linkages and Capacity (ILC) building framework, particularly helping people with psychosocial disability move towards self determination and increased inclusion in communities4. We note that the ILC recommends the use of the recovery approach with regard to mental health and we commend this step. However, whilst we agree with the policy of the ILC, some elements of its implementation are placing the recovery journeys of people with psychosocial disability at risk.

The services provided by the ILC are of particular importance for people who are ineligible for individual plans but rely on services to live well in their communities. We anticipate this will be a large number of people, as modelling indicates there are far fewer NDIS places for people with psychosocial disability than there are people with complex needs5. These people will be reliant on ILC funded services.

However, there has been a substantial delay between the roll-out of the NDIS and the implementation of the ILC, which is only now beginning to accept grant applications. Over this period, some services have begun to close due to a lack of funding. As previously mentioned, we have been informed that other services are beginning to refuse people who do not have NDIS plans, and federal services such as PIR are now focussed on NDIS applications and not providing their usual services.

Support workers have already seen people whose conditions are deteriorating as a result of lost services, with one stating “Some people who were not eligible for NDIS and were refused are now without a service and are becoming unwell. Some have needed to go into hospital“. The timeline of NDIS rollout is irresponsible and will be

4 NDIS (2015) A framework for Information, Linkages and Capacity Building. Australian Department of Human Services. 5 Royal Australian and New Zealand College of Psychiatrists (2016) Statement regarding the NDIS mental health funding shortfall [Press Release]. Retrieved from: https://www.ranzcp.org/News-policy/News/Statement-regarding-the-NDIS-mental-health-funding.aspx.

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devastating for people who rely on services to live in the community. We support the previous recommendation of Mental Health Australia that defunding services should be stopped until the ILC is in place6.

The goal of the NDIS to have more people with disabilities living in communities is only possible with the help of appropriately funded services. It is difficult to judge whether the level of funding for mental health services under the ILC is appropriate with the information available. We understand $351 million over four years is allocated to the ILC, but it is unclear how much of this will be for mental health. Given NGO community supports for psychosocial services received approximately $120 million of federal funding in one year (2010-2011)7, it is likely the amount of funding will not be sufficient. We recommend there be an urgent review of how much funding is required to support people with psychosocial disability who are living in the community. Recommendations:

  1. Government funding for community mental health services to be maintained until the ILC is fully implemented, with organisations who are supporting NDIS applications to receive additional funding to continue to perform their support services.

  2. Level of ILC funding for psychosocial disability to be sufficient to at least maintain and preferably improve community mental health services.

The planning process for people with a psychosocial disability, and the role of primary health networks in the process

Much like the application process, BEING has been told the planning experience is heavily dependent on the NDIA planner. A recurring issue for consumers, carers and support workers was that planners did not have a good understanding of psychosocial disability:

Planners to properly know about the effects of psychosocial disability and not see them as minor. To not give as little as they can and then cause stress for people when they have to appeal. For planners to actually read the letters of support detailing the support needed and actually taking that for fact not deciding the participant can do with less.

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One example of the importance of planners needing to understand mental illness is the case of people with fluctuating capacity. A person who sometimes experiences extreme anxiety about leaving the house or navigating public transport may schedule their planning meeting for a time when they feel well enough to go into the office. As a result, they will present to the planner on their “best” day. If a planner does not understand the fluctuations of mental illness and judges the participant without listening to them, they may fail to plan appropriate supports for the participant.

Several respondents also noted the importance of having a planner who got to know the applicant and developed an understanding of their situation. Having to explain a situation repeatedly to different planners was tiring and stressful for consumers. They wanted to build relationships with NDIA workers, and have a regular person to communicate with.

More attention should be paid to the supporting documents that are given to planners - I don’t even feel my planner read my reports. She did not listen to my needs and thought she knew what I needed. I have been recently told you cannot go to your planner for any queries now as their jobs are too overloaded. We need consistency and people who know us and our situation. How can complete strangers make judgements on your life and what support you need in it if they don’t know you? I find this poor. An individual person (planner) has too much input into what is reasonable and necessary for you. It’s basically if you have a planner who understands and knows you might get what you need. If you have one who doesn’t listen, doesn’t care, doesn’t know, you don’t get near to what you actually need.

  • Participant, 2017 Having a planner who could provide informed knowledge and support regarding mental illness made applicants feel respected and understood and increased the chances they would receive support appropriate for their recovery. One participant said:

The person interviewing me had a psychology background so he understood my disorder very well and I didn’t feel like I had to go into specific details about certain things. I felt heard and respected. I am grateful for the support I will be getting.

  • Participant, 2017 10

One respondent identified a risk of harm to the applicant if a planner is not skilled in interviewing people with psychosocial disability:

In some cases this puts people’s safety at risk. Those without mental health experience should not be attending some of these meetings, let alone facilitating them. The lack of understanding of mental health puts participants at risk as they are not being communicated with appropriately and their diverse needs are not being taken into consideration. This can not only place participants at risk of symptom relapse but also potentially the risk of self- harming behaviours, need for hospitalisation and emergency or involuntary intervention.

  • Support worker, 2017 It is vital that the NDIS employ planners with an understanding of mental illness, and ensure they have sufficient time to tailor a plan that meets the needs and recovery goals of people with psychosocial disability.

Several additional issues with the planning process were identified by support workers. These included:

 Contradictory and confusing information provided by the NDIA.  Unavailability of the services clients required, particularly those responding to urgent need.

Recommendations:

  1. All people with psychosocial disabilities to have access to planners who have experience and/or training in working with people who have a mental illness.

  2. NDIA planners to be able to build and maintain relationships with consumers, who should have a consistent person to liaise with.

The role and extent of outreach to identify potential NDIS participants with a psychosocial disability

The NDIS documentation acknowledges that people with mental illness may require proactive outreach, as they may not see themselves as having a disability8. However we are not aware of any outreach strategies the NDIS has implemented specifically for people with psychosocial disabilities, with the exception of the NDIA psychosocial disability fact sheet9.

8 NDIS (2015). A framework for Information, Linkages and Capacity Building. Australian Department of Human Services. 9 NDIS. Psychosocial disability, recovery and the NDIS [Factsheet]. Retrieved from: https://www.ndis.gov.au/medias/documents/heb/h21/8799160959006/Fact-Sheet-Psychosocial-disability-recovery-and-the-NDIS-PDF-774KB .pdf

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Our survey results suggest that most people applying for the NDIS have heard of it through existing government funded support services, such as PIR or PHaMs. This means that people who are not accessing these services may not realise they qualify for NDIS support. People with mental illness may have heard of the scheme but not realise they are eligible for it.

We recommend the NDIA develop an outreach plan specifically for people with psychosocial disability. One way of achieving this would be through better communication with healthcare workers about the NDIS. General Practitioners are the first port of call for people with mental illness10, however support workers who responded to our survey said many health professionals were confused by the NDIS. One stated “Some of my client’s GPs and psychiatrists have refused to provide any evidence because they don’t know anything about the NDIS”. We suggest GPs and other healthcare workers should be provided with education regarding psychosocial disability and how people with mental illness can apply for the NDIS.

Recommendation:

  1. NDIA to develop an outreach plan for people with psychosocial disability, particularly regarding how to reach those without regular contact with federal programs such as PIR or PHaMs.

The provision, and continuation of services for NDIS participants in receipt of forensic disability services

BEING had difficulty finding information regarding how services will be provided for people with psychosocial disabilities who are in contact with the criminal justice system, and notes that other organisations have faced similar issues11. Given the extremely high number of people with mental illnesses in custody12, we anticipate there is/will be a substantial need for NDIS services among NDIS participants in forensic settings. Research shows that people with multiple, complex mental illnesses have early contact with the criminal justice system and require substantial support in their recovery13. We recommend an investigation into how the NDIS can be utilised by people in these situations and transparency regarding the results of this, to ensure its consistent application.

10 Australian Government (2015). Mental health-related services provided by general practitioners. Retrieved from: https://mhsa.aihw.gov.au/services/general-practice/ 11 Smith, T., (2015). Further Unravelling Psychosocial Disability – Experiences of the National Disability Insurance Scheme in the NSW Trial Site: A Mental Health Analysis. Mental Health Coordinating Council, Sydney. p65. 12 NSW Mental Health Commission (2014). Living Well: A Strategic Plan for Mental Health in NSW. Sydney, NSW Mental Health Commission. 13 Baldry, E., Dowse, L., McCausland, R., & Clarence, M. (2012). Lifecourse institutional costs of homelessness for vulnerable groups. National Homelessness Research Agenda.

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When interviewing people with mental illness in indefinite detention, BEING found that many people had long delays (in some cases multiple years) in transition to lower security level facilities and the community14. This caused deterioration in peoples’ mental health, as their environment was more restrictive than was appropriate for their needs. By providing appropriate support and continuity of care, the NDIS could be very beneficial for people in forensic settings.

We have heard that the NDIS has stopped funding for supported overnight leave for forensic patients who do not have a conditional release date. This means that only people with friends and family able to provide this support could take this leave. Having overnight supported leave outside of a forensic facility is an important part of integrating back into the community and, without this, people who are ready to return to their community may be denied conditional discharge. The recovery journeys of people in forensic settings need to be supported, with appropriate services for their level of need.

We note that the NDIS commissioned the NSW Council on Intellectual Disability to investigate contact between people with intellectual disability and the criminal justice system and produced the report Participants or Policed?15 This report found that people with complex needs were often not getting the services they needed, may be reluctant to identify as having a disability and may require greater engagement by support services in order to trust and see positive potential in their lives. Another key finding was that people with intellectual disability might have rapidly changing needs that require flexible support. We anticipate people with mental illness may face similar obstacles and recommend this investigation be replicated for people with mental illness, in order to determine what system of support would be best for people with psychosocial disability.

Recommendations:

  1. Increased transparency about how people with a psychosocial disability and contact with the criminal justice system will be provided with NDIS services.

  2. Funding for supported overnight leave for forensic patients who do have a conditional release date to be maintained.

  3. Investigation into how disability support services can best assist people with psychosocial disabilities in forensic settings.

14 BEING (2016). Indefinite detention of people with cognitive and psychiatric impairment in Australia: Submission to the Senate Standing Committees on Community Affairs. 15 Simpson, J., (2013) Participants or just policed? NSW Council for Intellectual Disability

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Summary of Recommendations

  1. Application process to be simplified so that people without support have an equal ability to apply.

  2. NDIS assessments should use assessment tools designed specifically for people with psychosocial disabilities.

  3. NDIA workers to be trained in psychosocial disability and help applicants navigate the process.

  4. The NDIA to ensure that people with mental illness continue to receive support services until individually funded NDIS plans are put into place.

  5. The NDIA to ensure that important services, such as community transport, respite care, hoarding and squalor programs, and home care, are available as options under the NDIS.

  6. Services such as PHaMs and PIR, and other commonwealth, state or territory funded services to remain available for non-NDIS recipients.

  7. Government funding for community mental health services to be maintained until the ILC is fully implemented, with organisations who are supporting NDIS applications to receive additional funding to continue to perform their support services.

  8. Level of ILC funding for psychosocial disability to be sufficient at least maintain and preferably improve community mental health services.

  9. All people with psychosocial disabilities to have access to planners who have experience and/or training working with people who have a mental illness.

  10. NDIA planners to be able to build and maintain relationships with consumers, who should have a consistent person to liaise with.

  11. NDIA to develop an outreach plan for people with psychosocial disability, particularly regarding how to reach those without regular contact with federal programs such as PIR or PHaMs.

  12. Increased transparency about how people with a psychosocial disability and contact with the criminal justice system will be provided with NDIS services.

  13. Funding for supported overnight leave for patients who do not have a conditional release date to be maintained.

  14. Investigation into how disability support services can best assist people with psychosocial disabilities in forensic settings.

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