Supported Independent Living
Submission to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Supported Independent Living
The Office of the Public Guardian, Tasmania, welcomes the opportunity to provide submissions to the
Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS) in relation to
its inquiries on NDIS Supported Independent Living (SIL).
The Office of the Public Guardian (OPG) is appreciative of the benefits and opportunities provided by the
NDIS to people living with disabilities, including the persons for whom we act as guardian. The Scheme
represents a significant reform to the services that are available, to the way in which they are funded and, importantly, to the quality of life and to the autonomy of participants. The OPG commends the Inquiry and is keen to collaborate on improvements to planning processes and SIL approval and funding issues.
Introductory and Background Comments
The Public Guardian is an independent statutory officer established by the Tasmanian Government under the Guardianship and Administration Act 1995. The Public Guardian delegates her functions and powers to a small staff of guardians employed in two offices (Hobart and Launceston).
The primary role of Tasmania’s OPG is to act as the guardian for adults with a disability when appointed to do so by the Guardianship and Administration Board (the Board). A private individual will be appointed wherever possible; the OPG will be appointed when there is no other suitable person willing or able to take on the role, in highly complex matters or in situations of significant family conflict. This means the Public Guardian acts as guardian for some of the most vulnerable adults with disabilities in our community: those who have no family members or other support; those with dysfunctional and warring families; and those who have been or are at risk of abuse, neglect or exploitation.
The Public Guardian also has functions associated more generally to promote and protect the rights and interests of adults with disabilities, and with systemic advocacy: to foster, encourage and support the establishment and provision of programs, services, facilities and organisations which support people with disabilities.
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The OPG has seen an increase in the number of cases where the Public Guardian has been appointed for new matters specifically to make decisions about service provision under the NDIS, and an increase in the number of orders reviewed and extended for existing clients to include NDIS-related decisions. NDIS participants now make up approximately 45% of our case load - this compares to 27% as at 30 June 2018 and 18% as at 30 June 2017.
The workload associated with our NDIS participant clients also increases. Our analysis mirrors that conducted in other states: we estimate there is on average an additional 25 hours of work per year for each client who is an NDIS participants. This work is largely associated with extensive liaison with multiple parties; attending planning meetings; exploring goals and wishes of the participant; perusing and reviewing plans; selecting service providers; consenting to service agreements; and implementing and seeking reviews of plans.
Along with our interstate counterparts, the OPG is keeping a close watch on the potential risks of a market-based approach to funding, including issues around service provider readiness, potential gaps in service provision and any issues around the loss of service providers of last resort, as was provided for in state funded disability services. We have particular concerns surrounding arrangements for crisis services.
The OPG acknowledge the NDIS is still a new and dramatically different scheme, both as a funding model and in the principles underpinning it. Processes, protocols, policies and guidelines are still evolving. The roles of key players are still being clarified. The intersection and interaction between all parties remain in the process of negotiation. The OPG is working hard to ensure our role - as a formal substitute decision-maker - is well understood. We advocate for practices that support the choice and control of participants, with substitute decision-making being a last resort.
Supported Independent Living
a) the approval process for access to SIL
The OPG is concerned that the approval process can be unacceptably slow. The assessment of participants’ needs, the gathering of information to support the application and the time taken to obtain quotes can create significant delays during which time the participant may be left in situations of uncertainty and risk. SIL providers can be reluctant to accept new clients due to the delays in approvals.
We are also concerned that the assessment of the level of support needed by a participant can be somewhat arbitrary, sometimes compounded by an apparent lack of understanding of disability support needs. We have seen expert evidence/assessments from allied health professionals effectively ignored 2
with NDIS substituting its own opinion without any objective basis. Some participants have had a significant reduction in funded supports either on entering t he scheme or on subsequent plan reviews.
For many of these there is simply no apparent justification.
b) the vacancy management process, including its management and costs
The OPG is unclear about NDIS’ vacancy management processes. In our experience vaca ncies are often discovered and filled by word of mouth, or informal processes managed by providers. Shortfall funding from vacancies needs to be made clear.
c) the funding of SIL
As noted in relation to the approval process, funding can be insufficient to cover the level of support required. The NDIS appears extremely reluctant to fund SIL for individuals wishing - or needing - to live alone. There is an assumption that participants requiring SIL funding will be required to reside with others in shared accommodation or “group homes”. The OPG is concerned that this is contrary to both the NDIS’s underlying principles of choice and control, and the human rights articulated in the United Nations Convention on the Rights of Persons with Disabilities, which include that persons with disability have the right to choose where and with whom they live and are not obliged to live in a particular living arrangement.
Some individuals will, of course, prefer to live in shared arrangements, and will benefit from the opportunity to socialise with others. However the NDIS needs to be more “nimble” in dealing with incompatibility issues when they arise. The OPG is aware of several instances where physical assaults have occurred between co-tenants in shared accommodation, necessitating one or more participants moving to new accommodation. The NDIS needs to be prepared to promptly revise funding if a participant needs to move to either live on their own or with a smaller number of co-tenants.
The OPG strongly recommends that the NDIS allows for arrangements for participants to trial living in shared arrangements and/or to gradually transition into a shared SIL arrangement or from one to another. The option for two organisations to be funded to provide SIL at one time is necessary to ensure a gradual, responsive transition from one accommodation option to another. In order to provide “choice and control”, a participant ought to have the ability to trial or slowly transition to a new accommodation option without the risk of homelessness should the original provider take the view that, from a financial perspective, it is necessary to fill the vacancy immediately.
d) any related issues.
Lack of emergency SIL or emergency respite: Crisis support is not currently accessible through NDIS, yet
OPG guardians frequently need to make a decision on behalf of a participant to remove them from their
accommodation to a place of safety. This often puts the onus upon support organisations to provide (at times) significant amounts of support to an individual without any guarantee that NDIS will retrospectively approve SIL and remunerate the organisation for services rendered. Whilst awaiting an unscheduled review of a participant’s plan (which can take weeks, if not months), the support organisation is placed into a very difficult situation - whether to take the risk of continuing to support the participant in the absence of a funding agreement for them to do so, or to refuse support. Funded crisis or emergency support needs to be available to people with disabilities to ensure they can be supported to remain free from abuse, exploitation and neglect.
Transition from state funded health and correction facilities, and transition for children exiting state care at 18 years old
Participants in these cohorts often present with highly complex needs and it is common for discharge from medical facilities and correctional facilities to be delayed because of the unavailability of suitable vacancies and because of the complex planning, preparation and co-ordination of services required . Time is often required for the participant to develop basic skills in readiness for discharge to community living.
Importantly, behaviour support plans may need to be developed and training of SIL staff undertaken in readiness for discharge. The NDIS needs to approach these situations with flexibility, and funding provided for each step in a timely way.
For young people exiting state care, there needs to be a greater “intersection” between Child Safety Services (CSS) and NDIS so that planning occurs well before the child turns 18 and is therefore not left in a position where CSS is no longer responsible for their care, yet they do not have an NDIS funded plan in place to take over the provision of support needs such as accommodation, further supported education, employment or day support.
Illustrative case: Tom has been a long term patient of a psychiatric hospital due to lack of an appropriate discharge destination, with adequate support.
Tom was found to be eligible to access support through the NDIS early this year. It is his wish to live independently, with supports in the community. Due to Tom’s intellectual disability, emotional !ability and history of partaking in risky behaviours, he has been assessed as requiring 24 hour per day support. Largely, this support is important to ensure he has continual monitoring and the ability for a support worker to redirect him should he engage in an activity which is potentially unsafe.
At an NDIS planning meeting, Tom, his support coordinator and guardian were informed that it was very unlikely NDIS would fund 24/7 support for Tom. We were advised to begin looking for another NDIS participant with whom Tom could share accommodation and support. It is Tom’s wish to live independently, with support. The decision taken by NDIS to keep the costs of support as low as possible in this instance indicates an absence of choice and control for Tom.
In the meantime, Tom continues to reside in a secure psychiatric hospital. - He has not had the opportunity to have a functional skills or psychological assessment completed due to the gross lack of allied health professionals available to work with NDIS participants. There have also been ongoing disagreements between NDIS and the Department of Health regarding funding responsibilities for such assessments, when somebody is residing in a hospital setting. These assessments are required to inform an application for SIL. Lack of availability continues to impact upon Tom’s ability to move out of hospital and move on with his life.
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