Committee Secretary
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
CANBERRA ACT 2600
SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NDIS
INTRODUCTION
Collaboration in Mind (CiM) is pleased to make the following submission to the Joint Standing Committee on the NDIS in relation to the Inquiry into the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition.
Our submission will provide recommendations drawn from an NDIS readiness project undertaken by North Brisbane Partners in Recovery (PiR) in 2016 (see Appendix 1). This project used story harvesting with individual PiR participants and their support facilitators to gather key experiences that made recovery possible for each individual. The recommendations come directly from the individuals stories.
This submission will focus primarily on issues relating to eligibility; transition of funded services to the NDIS; and the role of primary health networks in planning for the NDIS.
BACKGROUND
Collaboration in Mind (CiM) is a group of mental health agencies in the North Brisbane and Moreton Bay region. Membership consists of Brisbane North PHN, Metro North Hospital and Health Service (Metro North HHS), community agencies that support people with a mental illness and who deliver the Partners in Recovery program, mental health peak bodies, and consumer and carer representatives.
The purpose of CiM is to improve health outcomes for adults with severe and persistent mental illness living in the Brisbane/Metro North region, through collaborative service planning, delivery and evaluation.
The Brisbane North PHN Chairs and provides Secretariat support to CiM. Brisbane North PHN is one of 31 Primary Health Networks, which the Australian Government established in July 2015 to replace the national network of Medicate Locals. The PHN supports clinicians and communities within North Brisbane, Moreton Bay and parts of the Somerset region. The PHN region covers approximately 4,100 km² of urban, regional and rural areas, with a population of over 900,000.
The key objectives of the Brisbane North PHN are: increasing the efficiency and effectiveness of medical services for patients, particularly those at risk of poor health outcomes, and improving coordination of care to ensure patients receive the right care in the right place at the right time.
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Brisbane North PHN is also the lead agency for Brisbane North PiR. CiM takes the successes of PiR and the collaborative work undertaken between agencies. It has expanded the focus to consider the range of services and supports for adults with severe and persistent mental illness.
RECOMMENDATIONS
Recommendations drawn from an NDIS readiness project undertaken by North Brisbane Partners in Recovery (PiR) in 2016 (see Appendix 1)
Recommendation 1 Communication: That the NDIA engages in meaningful communication that is delivered in a timely manner and that this communication reaches the target audience.
Recommendation 2 Pre-planning: That the NDIA engages in a comprehensive well-resourced pre-planning phase to ensure the participant receives a plan that meets their needs.
Recommendation 3 Adequate resourcing: That policy makers ensure adequate resourcing is available throughout the planning process.
Recommendation 4 Recovery orientation: That service providers engage in transition and planning activities from a recovery oriented framework.
Recommendation 5 Training for front line staff: That service providers provide adequate support and training for staff.
Recommendation 6 Accurate and thorough evidence documentation: That service providers be thorough in their documentation and evidence gathering processes.
Recommendation 7 That participants, families and carers seek knowledge, skills and support in preparing for the NDIS.
Recommendation 8 That participants, families and carers engage in training or activities to enhance skills in communication and self-advocacy.
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RESPONSE TO THE INQUIRY TERMS OF REFERENCE
In response to item 1.a. of the Terms of Reference, CiM makes the following comments:
Issues of evidence: The concern of eligibility for this cohort centres on producing evidence within the specified timeframes. It is the experience of PiR that participants frequently have significant support needs and these can affect the individual engaging and maintaining engagement with the service system. Issues include:
unwillingness to self-refer and/or provide consent for service difficulty in attending appointments for formal diagnosis and assessment in a timely manner limited formal and informal supports transience/ homelessness and consumer disorganisation.
The level of evidence required is also an issue. CiM recommends that assessment consideration should include sources such as frequency of hospitalisation, the duration, frequency and non-engagement patterns with existing or previous services, levels of informal carer support used, history of sustaining housing and employment.
Issues of terminology: The terminology used by NDIS eligibility of ‘permanent’ and ‘lifelong’ is dissonant to recovery-oriented practice within mental health. Psychosocial disability can be episodic in nature and this should be reflected in the assessment of eligibility for the NDIS.
Eligibility exclusion issues: It is noted that Post-traumatic Stress Disorder and substance use/ misuse are excluded from eligibility into the NDIS. However, these conditions can and do have a lifelong negative impact on a person’s psychosocial abilities. Particularly people from a refugee background may have post-traumatic stress disorder and the exclusion of PTSD will have significant implications for this group of people.
In response to items 1.b.i. and 1.c.i. of the Terms of Reference, CiM makes the following comments:
Ineligibility and reduction in services: The nature of mental illness is that, during the course of a lifetime, there are individuals in the community who experience one or more frequent episodes of acute mental distress or a chronic illness with varying levels of severity and complexity. The aim of community mental health services is to assist in building an individual’s capacity to live independently within their community. Unmet needs and the impact of psychosocial disability will often result in the individual with a fluctuation in support requirements. In effect, this makes these individuals ineligible for the NDIS. In a ‘Catch 22’ type situation, without support, these needs increase. The current reduction/cessation of funding of established and evidence based community supports that previously filled this gap returns this increased demand upon a public sector that has already reached capacity.
Any reduction in existing services during the roll out of the NDIS needs to be carefully timed and managed to ensure services and supports remain available via these programs until the NDIS is fully functional.
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NDIS and Housing: The HHS have comprehensively reviewed the functioning of the Housing and Support Program (HASP) and this has been a key aspect of improving the quality of support services for consumers and their families. The review found that ‘social supports’ were favoured ‘over in-home or domestic assistance’, often resulting in the consumer being unable to maintain their tenancy and property. A similar review will be required for a number of complex consumers when they transition to NDIS. If existing services are transitioned to the NDIS with loss of tenancy support and consumers, self-select social supports over in-home and domestic assistance, many participants risk becoming homeless.
The transition of HASP funding into NDIS has resulted in reduced capacity for providers to maintain effective partnerships with clinical and other providers to ensure the delivery of wrap-around supports for people with psychosocial disability. The HASP partnership approach has enabled the achievement of both recovery and clinical outcomes for consumers through clearer service provider relationships and opportunities to advocate for a consumer’s clinical and other support needs.
NDIS and transport: Insufficient allocation of funding for transport, especially as people lose access to other travel schemes and mobility allowances, has a twofold impact. The financial burden is expected to be absorbed by the service provider who in turn must seek a financial contribution towards transport or vehicle expenses. The impact of reduced funding increases the risk of social isolation and minimises the amount of community access that can be provided for participants.
Continuity of support: Government modelling through the National Mental Health Service Planning Framework, in relation to the population presently requiring psychosocial community support services of more than 500,000, significantly differs from that allocated by the Productivity Commission for the NDIS of 64,000. Whilst statements have been released indicating that ‘commonwealth clients who are not eligible for the NDIS will receive continuity of support’, this conflicts with the current reduction and planned cessation of funding to programs such as Day to Day Living, PiR, PHaMs and mental health carers respite that presently provide this support.
This loss of programs to support the possible 436,000 population who will require support but are not included in the NDIS estimates will have a significant impact on the health of the individual, their families and the communities in which they reside and on the health system more broadly.
Continuity of support needs to be clearly articulated as to what these supports and services will be, who will provide them, how will they be accessed and how will they be funded. The continuity of support process needs to be developed as soon as possible so that agencies can assist the transition of individuals from programs such as PiR and PHaMs into those that will exist under continuity of support.
Specialised services and block funding: Clients who have multifactorial stressors and complex needs require specialised services. NDIS price and costings do not reflect the specialised services and interventions required for this client group and the importance of evidence-based therapies. Community based services such as PiR and PHAMS, as well as State based services for people with complex needs not eligible within the NDIS, would need to continue. Tracking the take up by CALD people with psychosocial disability is of significance, to ensure accountability of the NDIA to this population group.
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Needs and financial support available: The framework does not adequately support people with psychosocial disability. Financial support is inadequate to meet the demands of this client group. There are questions as to whether the allocated funds will be able to meet this population group and their associated areas of need:
“The NDIA has been handed the most miniscule possible budget for this work. Just $132 million when the NDIS is fully rolled out. With this funding the NDIS is expected to develop a system to provide assistance to 1.2 million people (900,000 people with disability + 350,000 carers).”
– ‘Houston, We Have Some Problems (with the NDIS)’, The Disability Trust newsletter, p15, January 2017
Mental Health Australia has called for a quarantining of all funding previously earmarked for mental health programs and that all spending on mental health through the NDIS be tracked and reported publicly.
CiM supports the concerns raised by many stakeholders that as funding becomes a ‘one-size-fits-all approach’, individual needs are less recognised as perception of needs become associated with a diagnosis. An example of this was publicised across general media early in the transition (May 2014). A carer named Michaela said the South Australian trial of the NDIS commenced well but did not last:
“The first plan was very supportive, we felt quite prepared and aware of the process and then we got to our second plan review and it was very rushed, it was with someone new that we’d never met before who didn’t know Harry or his unique set of challenges and suddenly his access to therapy was significantly slashed,” she said.
Harry’s mother says the initial assessment meeting with NDIS workers was positive about what her son required. But she says the follow-up sessions left her feeling judged, unsupported and confused about how to negotiate the support system.
“I guess we were seeking something very unique to Harry and to what he needs as an individual and what we got was more of a one-size-fits-all plan, so ‘here you go, here’s your funding, try and make that work for you’,” she said.
- ‘NDIS: Parents say disability scheme failing to deliver support promised’, ABC News, 1 May 2014 Barwon not indicative of PiR sites:
It is also important to compare like-for-like sites when considering the benefits and deficits of NDIS transition. For example, in the Barwon trial region, PiR was not established. Therefore, it should not be used as a comparative site for other regions such as North Brisbane where PiR already provides a coordination service similar to the NDIS.
In response to items 1.e. of the Terms of Reference, CiM makes the following comments:
Planning methods used: The drivers for meeting targets within tight timeframes has necessitated the planners to engage via telephone. There are examples from areas already trialling NDIS of the planning interviews occurring by this method and by staff with no experience with mental illness/psychosocial disability, which is a concern with this group because they:
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a) are not reliable in responding to phone calls b) are not always contactable c) may have cognitive impairment d) have impaired therapeutic alliance (trust issues) e) have communication difficulties. Cultural inclusivity is a value and a practice that needs to be incorporated at every step, which includes but is not limited to access to interpreters and translating relevant documents into community languages. Currently people from CALD backgrounds face multiple barriers to access the scheme.
A plan developed over the phone will not provide adequate information regarding an individuals’ experience of psychosocial disability. A one-size fits all approach to planning, runs the risk of planners being prescriptive, and not implementing the intention of the NDIS.
Engagement strategies required: The experience to date has shown that some consumers do not identify with the notion of disability, and may be very unwilling to engage with the Agency at any level. An appropriate engagement strategy and on-going support is required for these consumers. Without an appropriate engagement strategy there is an increased risk of people who require support not participating to avoid having to engage with the NDIA. The option of using a Plan Nominee to engage with the planner on their behalf is not always possible, nor ideal.
Need for support connection: The NDIA is striving to meet its overall target for each location as it transitions into the scheme. The newly appointed Local Area Coordinators (LACs) have targets for developing plans. There is a concern that LACs are less able to provide assistance to help people implement their approved NDIS Plans, resulting in them including an allocation of funding for limited hours of Support Connection (x10 hours) in plans that are then expected to be implemented by other providers, notwithstanding their conflict of interest concerns.
People with psychosocial disability require far more than ten hours of support connection. There should be a standard allocation of funds for on-going and/or periodic support coordination.
Impact of planning support on providers: The financial burden of providing on-going support and encouragement to clients to engage in the planning process is affecting providers. Allowing providers to claim an establishment fee for assisting some participants does not cover the costs involved. In addition, it is of considerable concern that funds are deducted from participant’s plans, rather than from the NDIA. It also appears that NDIA Planners are not advising participants that such a fee can be taken from their package.
Delay in receiving plans: The delay, sometimes a matter of weeks, between approval of a plan and receipt of the plan is leaving participants without access to support.
Lack of role clarity: The role of the public mental health service and non-government services in advocating for their consumers who do not identify themselves as requiring disability supports is still very unclear. There appears to be a long standing lack of communication between the Public Trustee and the NDIA. This can result in the burden of negotiating and managing plans left to the participant or their trusted provider, while the process is essentially unfunded.
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There are issues for the role of the Office of the Public Guardian and concerns for consumers who lack capacity, but do not have a formal guardian.
Establishment of roles between agencies must be clear to ensure the most vulnerable consumers with impaired capacity receive equitable access.
Choice and control: The NDIS principles of choice and control are a double-edged sword for a certain percentage of this cohort group as some clients do not recognise or agree on the level of support required. This group is difficult to engage given their transient nature and resistance to service providers and may be disadvantaged given the current NDIS model. Currently community managed services spend a high proportion of time in the pre – planning phase, which realistically can be at least 2 to 4 weeks. This important phase of participants’ engagement is unable to be billed. Without comprehensive pre-planning preparation, clients who are in high need of support services will not receive the intensive support required. This may result in increased presentations to emergency services. This would result in an increase in the cohort of vulnerable and marginalised people.
Safeguards: Safeguards need to be in place to minimise an individual’s risk of exploitation by organisations who are not experienced in working with people with severe and persistent mental illness. Other safeguards relate to accessing My Portal when people do not have technical or computer literacy. Agencies can incur financial burdens if required to assist participants with this process and will require payment for this. In the current model, this work would be funded under the Information, Linkages and Capacity Building Framework (ILC) of the NDIS. ILC forms a small component of the budget available under the NDIS but requests for this type of assistance could overburden agencies.
Financial management of crises: The plan needs to be effective and responsive in meeting potential or actual crises with funds quickly accessible. Not all services will have the necessary buffer of funds (overdraught) to manage unforeseen crises until payment is received for example crisis accommodation and emergency funds. An inability to access this funding resource may result in increased workload on emergency services personnel and Emergency Departments and increased hospital admissions. People with psychosocial disability have needs across a broad range of domains and the services within NDIS are limited.
Plan reviews: The chance of seeking a review of any inadequate plans is not an option (requests are generally declined) while the NDIA effort is focused on getting as many people through the process by the due date. It would be better if draft plans were sent to participants and their nominated representatives so they have an opportunity to review and discuss the plan with their support people and their planners before plans are sent on for approval. This would ensure they are appropriate and meet participant’s support needs and would reduce the number of requests for reviews.
Regional approach and the PHNs: A coordinated regional approach is needed for those people experiencing mental distress and their families. There are multiple elements to the service system and multiple providers. A planning process supports an understanding of need and current provision as well as unmet need and demand. Primary Health Networks are well placed to undertake that work in terms of both current stakeholder relationships, mandate and their role as commissioning bodies within regions.
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Brisbane North PHN is the lead agency for PiR, delivers coordinated care for people with chronic/complex conditions, and leads a consortium of providers that deliver aged care assessment services through a Regional Assessment Service. This makes it well placed to be a Local Area Coordinator and to assist with NDIS planning. However, not all Primary Health Networks are lead PiR agencies or provide these other services and so their role in NDIS planning may vary. Through the PHN’s Brisbane Mind program (previously the Access to Allied Psychological Services program), Brisbane North PHN works closely with General Practitioners and Allied Health Practitioners making it well placed to deliver health professional education and training on the NDIS and eligibility documentation.
In response to items 1.h. of the Terms of Reference, CiM makes the following comments:
Need to initiate plans within 3 months: Three months is too short a time for this cohort. A proactive approach is needed to support consumers to access pre-planning and plans for a transition. This could take considerable time given the complexity of conditions (medical, psychiatric, social and cognitive) comorbidity and isolation and disconnection from community networks and resources that is longer than three (3) months.
Support coordination and specialist consultation: There should be funding for support coordination for this cohort prior to discharge from prison, acute mental health in-patient units and longer stay psychiatric units and hospitals.
Planners need consultation with mental health specialist providers to ensure full awareness of conditions and issues and are cognisant of the implications on mental health clients and conditions of leave and living in the community.
In response to items 1.i. of the Terms of Reference, CiM makes the following comments:
Workforce recruitment and retention: The NDIS price for core supports does not allow for recruitment and retention of a suitable workforce with the appropriate skills necessary for working with people with psychosocial disability. The nature of their condition requires a skills set that cannot be maintained at the set price. This effectively results in a de-skilling of the workforce, reduced capacity for organisations to provide an adequate level of supervision and training, to undertake appropriate safety assessments, as well as potentially increasing the vulnerability of participants and reducing their clinical and recovery outcomes.
The Australian Capital Territory has reported difficulties in sustaining adequate and quality staff due to changes in the award requirements if the lower NDIS prices and costs are to be met. This has already been felt in advance of the roll out in Queensland as staff members explore alternative options of employment, leaving workforces with unqualified staff and unable to meet the needs of NDIS participants.
Client/ workforce relationship building: Community managed services have dedicated and skilled workforces which provide a consistent relationship with the client and in many cases are the only advocate/support in their lives. With the move to a flexible workforce based on service fee funding, this cornerstone of relationship alliance will be severed, or not developed. This is likely to impact negatively on the client/participant.
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Lack of open market impact on businesses: The NDIS is a controlled scheme, not open market-based. In a real open market, businesses have the opportunity to set prices for their goods and services, and to determine how people access their goods and services and which consumers they are targeting. The NDIS service types and prices are fixed. The NDIA wants to safeguard the principles of access and cost for people with disability. However, when there is limited choice with so much control and the number and type of businesses who can compete in this approach are more limited, they need to have high access to cash equity and must focus on scale rather than expertise and quality. Cost price pressures will eventually force the NDIA to increase their payments for services due to the inability of the ‘market’ to provide appropriate services.
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CiM
Logo Organisation Position E-Signature
Signatory
Aftercare Regional Craig Stanley-
Manager QLD Jones
Brisbane North PHN CEO Abbe Anderson
Communify CEO Karen Dare
Footprints Inc CEO Cherylee Treloar
Institute for Urban Regional Social Leshay Maidment
Indigenous Health Health Manager
(IUIH)
Mental Illness Acting CEO Jennifer Pouwer
Fellowship of Qld
(MIFQ)
Micah Projects Inc CEO Karyn Walsh
Multicultural Program Manger Betti Chapelle
Development Culture in Mind
Association Inc (MDA)
Neami National State Manager Tanya Miller
North Brisbane PiR Carer Rep Tina Pentland
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North Brisbane PiR Consumer Rep Emma Davidson
Open Minds General Manager Denise Cumming
Operations
Queensland Alliance CEO Kris Trott
for Mental Health Inc
Richmond Fellowship CEO Kingsley Bedwell
Queensland (RFQ)
Metro North Hospital Executive A/Prof.
and Health Service Director Metro Brett Emmerson
North Mental
Health
Wesley Mission Director Kristine Sargeant
Queensland Community Care
and Inclusion
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Appendix 1: Summary of Recommendations from North Brisbane PiR NDIS readiness project
Recommendations for National Disability Insurance Agency (NDIA)
- Communication: ensure that all relevant service providers have the appropriate skill set to meet the needs of this population group.
Advertise NDIS broadly and with a specific mental health focus to reach people with psychosocial disability.
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Pre-planning: a comprehensive well-resourced pre-planning phase to ensure the participant receives a plan that meets their needs. Allocate more than one planning meeting for people who require time to feel enough trust to continue with entry into the NDIS. Fund well supported individualised pre-planning for people with psychosocial disability. Consult service providers about how to resource and train for pre-planning activities. Offer support (chosen support person/s to be present) to participants with mental health issues in the planning meeting. Recommend to participants that they seek pre-planning and implementation of the plan support from current service providers and/or independent planners and supports. Make existing pre-planning resources available to participants and service providers through an engagement strategy. Commit to regular communication with participants during the planning process, particularly if there are delays. Ensure planners honour pre-planning, regardless of format, by translating this work into ‘NDIS plan’ language themselves if necessary. Provide an automatic amount of funded Specialist Support Coordination (time limited) and ongoing coordination of supports for people with psychosocial disability arising from severe and persistent mental illness in every plan. Offer free and accessible advocacy and support for people with diagnosed mental illness to ensure successful engagement with and utilisation of plans.
- Education, training and skill development: ensure that all relevant service providers have the
appropriate skill set to meet the needs of this population group Ensure planners and Local Area Coordinators (LAC) have a mental health skill set, and understanding of the impacts of mental illness. Ensure planners and LACs are positive and compassionate and have experience in engaging with people who may have difficulty communicating their needs.
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Ensure planners and LACs take time to establish rapport and learn about the person’s strengths, as an immediate focus on deficits or supports can be overwhelming and is not aligned with recovery oriented practice. Work with professional colleges to develop training packages for their members to increase awareness of and facilitate access to NDIS. Provide education for participants, carers and families to self-advocate.
Recommendations for policy makers
- Ensure adequate resourcing throughout the planning process. Preplanning: provide ongoing funding for preplanning activities, including after the completion of the rollout. Planning: allocate adequate time for face to face conversations to be had across a number of appointments to establish needs and build rapport. Post planning: provide a mechanism for entry back into the planning process when/if significant changes occur. Make flexible funding available for LACs to allocate for small sum/high impact interventions to target needs that may not be able to be addressed within the plan.
Recommendations for service providers
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Engage in transition and planning activities from a recovery oriented framework. Adapt/translate language in planning to the audience (NDIA and participants) to get the best outcome for participants. Provide culturally appropriate support in pre-planning for people from Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse population groups. Deliver NDIS information and pre-planning with optimism and over a period of time which suits the person’s capacity. Support people to collect as much supporting information and start as early as possible.
The planning process may engender discouragement - provide ongoing
encouragement and support. Use available pre-planning resources that suit the person’s needs. Ensure people have a mechanism to request a change in funded supports when / if changes occur. In pre-planning, start with dreams and aspirations, construct goals and then think about supports. Ensure the participant has thought about the informal supports available to them and about how they might like to manage their funding. Advocate for meetings to be held where the person feels comfortable. Ensure support is provided in the planning meeting if the person wants it.
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Provide adequate support and training for staff. Train staff in the planning process so they are well equipped to support people through it. Genuinely engage in pre-planning work with current clients without expectation of post-plan service provision to the client (being aware of conflict of interest). Provide people providing NDIS assessments with assistance to access relevant information about the NDIS. At implementation stage, clear and transparent communication, information and agreements will reduce confusion over changed roles.
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Be thorough in documentation and evidence gathering process. Supporting information should focus on how the person’s disability impacts on daily functioning. Make the link to underlying mental health issues in pre-planning and do not focus purely on the presenting problem (e.g. substance use in and of itself is not covered by the NDIS, but there may be a mental health issue underlying the substance use behaviour). Ensure pre-planning is documented and the person takes the documents with them to the planning meeting.
Recommendations for participants, families, carers
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Seek knowledge, skills and support in preparing for the NDIS. Advocate for funded pre-planning opportunities. Seek pre-planning and planning support from trusted current service providers or independent pre-planners. Seek training in the planning process so you know what to expect and what can be contested. Collect as much supporting information and start as early as possible. Supporting information should focus on how the person’s disability impacts on daily functioning. Make the link to underlying mental health issues in pre-planning and do not focus purely on the presenting problem (e.g. Substance use in and of itself is not covered by the NDIS, but there may be a mental health issue underlying the substance use behaviour). In pre-planning, start with dreams and aspirations, construct goals and then consider supports. Ensure you have thought about the informal supports available to you, and about how you might choose to manage your funding. Request planning meetings to be held where you feel comfortable. Ensure pre-planning is documented and you take the documents with you to the planning meeting. Include contingency funding for crises in plans, based on past two-year history e.g. hospitalisations.
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Engage in training or activities to enhance skills in communication and self-advocacy. Research and access opportunities for communication and self-advocacy training.
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