Submission 46 — Office of the Public Guardian Tasmania — Supported Independent Living

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—————– – 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.

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

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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 OP~ 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 11nimble“ 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.

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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.

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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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