Submission 15
Submission to NDIS
Planning, Supported
Independent Living
Inquiry
September 2019
NSW Trustee1’1)
GOVERNMENT & GuardianNSW
Table of Contents
Role of NSW Trustee & Guardian…………………………………………………………………………. 3
Relationship with NDIS ……………………………………………………………………………………….. 3
NDIS Planning Responses ………………………………………………………………………………….. 4
Supported Independent Living (SIL) …………………………………………………………………….. 8
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Role of NSW Trustee & 1,221NDIS plan.clients for who we act as guardian with an Guardian Where the Public Guardian is appointed as guardian, NSWTG is involved in the NDIS pre NSW Trustee & Guardian (NSWTG) is a planning and planning process, including statutory agency within the NSW Stronger releasing information to National Disability Communities Cluster. Insurance Agency (NDIA) planners and attending meetings. NSWTG negotiates with the It supports the Chief Executive Officer of the NDIA on behalf of the participant about what is NSWTG and the Public Guardian to protect the accepted as reasonable and necessary rights, dignity, choices and wishes of the people supports and seek reviews of plans when of New South Wales. Our services support and needed. The Public Guardian can be appointed protect some of the most vulnerable members to make decisions about services provided to of the NSW community, as well as supporting the participant through the NDIS plan. people at critical moments in their life. Guardians advocate for the participant to We do this by providing independent and receive funding for appropriate services and impartial financial management and support, while negotiating with support guardianship services that supports clients and coordinators about the selection of the most helps them manage their health, lifestyle and appropriate service provider for the participant. financial affairs. Guardians can decide which service providers will provide a service to the participant. We are appointed for people with cognitive impairment which impacts their ability to make Staff appointed to make guardianship decisions decisions in different areas of their lives. We in NSWTG made more than 5600 decisions on can be appointed as financial manager or behalf of clients about the NDIS last financial guardian by the NSW Civil and Administrative year. These include service and support Tribunal (NCAT) or the Supreme Court. decisions. Financial management orders appoint the NSW For financial management clients, NSWTG Trustee where there is no other appropriate performs the following roles: option available. The Public Guardian is the
‘guardian of last resort’ and will only be informs clients that they may be eligible
appointed if it is determined a guardian is for the NDIS
needed and a suitable private guardian - usually provides the NDIA with financial
a family member or friend of the person who is information to assist in planning clients’ willing to take on the role - cannot be identified. NDIS packages and ongoing support to The decision-making delegations are separated ensure the development of meaningful to ensure that staff employed to make plan;
guardianship decisions are different to those provides the client a copy of their
who make financial management decisions. personal budget to take to their planning This limits the influence a guardian or financial meeting or review
manager has over one client and removes any manages their transport funding if they
conflict of interest when making decisions. are unable to manage it themselves.
NSWTG also reviews NDIS service and
Relationship with NDIS accommodation agreements and agrees when the client needs to pay a personal
financial contribution. NSWTG’s relationship with the National Disability Insurance Scheme (NDIS) is through its role as a financial manager or guardian for people with cognitive impairment.
NSWTG has 4,500 financial management clients with an NDIS plan in place. There are
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NDIS Planning personala review offundstheirhaveplan beentakeswithoutplace. Thisservicescan until
Responses result in homelessness, remaining in hospital for an extended period, or involvement with the
criminal justice system. All NSWTG clients, whether they are guardianship or financial management clients, who are NDIS participants have a Local Area b. The ability of planners to Coordinator (LAC). Despite having complex understand and address needs, not all clients have a planner appointed and the LAC develops the plan. Given the complex needs cognitive impairment and complex needs of our NDIA has different interpretations of the support clients they should have a planner allocated in needs of a person with complex support needs the first instance to ensure the plan reflects their with a criminal justice history. The needs. interpretations can influence funding decisions including SIL approval and the proportion of Where possible, being able to maintain the funding for the participant considered to be same planner for a client would enable a faster reasonable and necessary due to their disability. response when issues arise. Delays occur when a new planner needs to be engaged to establish Similarly, NDIA planners have often excluded a relationship with the participant and ensure all trauma in their disability diagnosis. NSWTG factors in the client’s life are reflected. believes that trauma should be considered. The traumatic impacts may have been caused by
a. The experience, expertise being placed into care, forced removal due to and qualifications of planners family neglect, victims of domestic violence or other abuse, and early childhood neglect. NSWTG staff have observed varying experience of planners regarding disability, There are issues with planners understanding support needs and this is often reflected in the the difference between the need for support and quality of the plans. A planner with solid whether the participant engages with the experience and expertise in working with people supports. This has meant the participant may with multiple disabilities will understand more need support but not engage with the level readily the need for supports that are being required, resulting in the NDIA removing that sought. NSWTG have observed a need for level of support as if it is no longer needed. reviews of plans and decisions where necessary supports are not identified in the When making guardianship decisions, NSWTG planning process. has generally had a positive experience with the
Complex Support Needs Pathway (CSNP) and
the specialist planners within this pathway Where NSWTG clients’ necessary supports (including their skill and expertise). NSWTG have been underfunded in their NDIS plans, we believes the CSNP was a much-needed have been unable to ascertain whether this is response pathway. It can however be difficult to because of the lack of experience, expertise or convince mainstream planners to make a qualifications of the planners. For example, referral to the CSNP. It is unknown whether this NSWTG was asked to approve a client is because of a lack of understanding of the contributing $1792.60 of their own funds to CSNP by the planners and NDIA service cover a shortfall of funding for essential therapy delivery staff, or lack of expertise in dealing with and physiotherapy services between July 2019 participants with complex needs. and December 2019. NSWTG has seen examples of plans not covering major items, e.g. a custom-made The underfunding of some clients has resulted wheelchair, and underestimation of costs for in them having to pay for Supported consumables or other core supports, e.g. Independent Living (SIL) services from their continence aids, therapeutic podiatry, etc. own funds. Other clients who have been underfunded and do not have additional
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Given the cognitive impairment and complex e. Participant involvement in needs of NSWTG clients, they require ongoing the planning processes and funding for a high level of support coordination and to be allocated to experienced NDIA the efficacy of introducing planners. Where this has not occurred planners draft plans have not displayed the ability to understand and appropriately address the individual needs. The inclusion of decision making support for NSWTG clients will not have the capacity to participants with cognitive disabilities would self-manage or manage their plan without ensure participants maximise their involvement professional support. It is not the role of in the development of their plans. The NSWTG to manage these packages. involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding
c. The ongoing training and for a decision-making support and capacity professional development of development to be included in a participant’s planners plan. Currently, the responsibility to establish what support the participant needs to be fully No comment. involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have
d. The overall number of observed instances where planners and support planners relative to the coordinators are focussed on seeking advice demand for plans from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by While NSWTG does not have insight into the stakeholders this should reinforce the need for number of planners relative to the number of capacity building to be included in the plans, it seems that an escalation process has participant’s plan to maximise the person’s been introduced for clients who are participants autonomy. The inclusion of capacity building in that experience delays. These delays often these cases does not reflect NSWTG’s leave the participant in crisis or without support. experience. Between November 2018 and August 2019, the Public Guardian has made 24 referrals to the The introduction of draft plans would give the Critical Service Issues Response (CSIR). person, their family, supporters, advocate or guardian the opportunity to see if everything has Where there are delays with planners and other been covered in the proposed plan and amend issues matters are often referred between where necessary. This could also reduce the teams, leaving no avenue for guardians to need to request reassessments and be a more obtain consistent communication or an update efficient use of everyone’s resources. Where on progress of plans. Planners are often NSWTG is the financial manager, this could reluctant to give their contact details. Providing also provide an opportunity to identify supports an avenue of contact for urgent matters would currently paid by the individual that should be assist. included. In crisis situations there needs to be a way of expediting this. Where it is apparent that the funding is inadequate to meet the participant’s needs, it is
f. The incidence, severity and very difficult to have a plan reassessed. Plan reassessments are requested and do not occur. impact of plan gaps It is unclear whether this is because of a lack of Where NSWTG is appointed as guardian, planners. significant gaps occur when NDIA disputes the currency of stated disability needs or lack of recent functional assessments. These gaps in information can occur due to barriers in getting this from the participant, e.g. affordability, being
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in prison, insecure housing or when homeless. Several participants where NSWTG is the When a person has multiple diagnoses, the financial manager, have Specialist Disability planner may not have the experience to Accommodation (SDA), SIL and support understand the links between a person’s coordination provided by the same disabilities, the functional impact of these organisation. In some circumstances this may disabilities and their need for reasonable and work well in terms of familiarity. However, it necessary supports. On occasion NDIS take the could cause a conflict of interest where the one view a requested support is a ‘health matter’ provider is responsible for accommodation,
and not a matter related to the disability. personal care and support coordination. If the
provider does not meet the needs of the Where there are gaps in plans, the personal participant in any of these areas, it is difficult for funds used by the participant to support the any NSWTG client to raise or resolve these continuance of the plans until review is not issues. claimable or reimbursed. Where NSWTG is appointed as financial manager the need for participants to pay for supports not included in g. The reassessment process, NDIS plans impedes achieving their identified including the incidence and goals, participating in the community and impact of funding changes reduces their quality of life.
The delays for reassessment of plans for some Given there may be plans that have a shortfall participants have meant that reassessments are
in funding for items such as continence aids, not performed until the original scheduled
therapeutic podiatry, etc., a mechanism is review date. needed to provide for plan adjustments for such items. The financial burden on participants The delay in the review of the initial YPIRAC when their plan funding runs out can leave them plans has been outlined above. out of pocket by thousands of dollars.
Where NSWTG is financial manager, we have h. The review process and observed that initial Young People In means to streamline it Residential Aged Care (YPIRAC) plans had errors. For example, services provided by the Where a guardian has been appointed, there aged care facility as part of aged care support have been instances where planners have set a were missing from the funding package. The time and date for a planning meeting without resolution of these funding adjustments reference to the person, services, Coordinator continues. NDIA report that there is a backlog of Supports (CoS) and/or a guardian. This for the review of the original plans. In many results in a lack of representation of the cases the plan review is overdue. person’s will and preferences and a lack of advocacy for improved plans. Currently NSWTG has identified approximately $200,000 owing to NSWTG clients who are It is rare for service providers to be willing to participants in NDIS. carry on providing services when there is a gap in funding and the client is waiting for a review. The appointment of YPIRAC-specific planners The length of the waiting periods for the review has significantly reduced errors in new plans. to occur can result in anxiety for families, NSWTG understands that the backlog in service providers and the person themselves. reviewing initial plans is progressing slowly. These delays also require increased resources for guardians to organise reviews, changes of circumstances, increased CoS hours, etc. NSWTG has found that some NDIS and other Waiting periods place the person at risk of providers will not accept the cohort of NSWTG losing their support services. Where the service clients with complex needs. This has limited the provider is not receiving payment they may not available options for these clients and reduced be in a position to continue. their choice and control.
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To obtain sufficient funding for a person many needs they should be able to nominate to have reports may be required to provide evidence of it rolled over. There needs to be safeguards to current disability and needs. The cost of reports allow for a review within a reasonable timeframe is high and comes directly from the person’s if there is a change in their needs and funds. This reduces what is available to spend circumstances. on their actual support services. The lack of weight given to the person, their
k. The circumstances in which supporters/family and guardian about their knowledge of the person’s support needs does longer plans could be not reinforce the dignity of the person. introduced
Where NSWTG is appointed as guardian, it There have been circumstances where, when would assist if contact could be made with the appointed as the guardian, NSWTG has planners directly to discuss review. advocated for longer plans to increase Communicating with generic emails and calling confidence of the participant in the availability of a ‘1800’ phone number impedes efficient stable supports. The circumstances where this resolution. would be appropriate are where the evidence is strong that no significant change in the Where a participant is considering a review, a participant’s circumstances is forecast. Where a timeline for the process would manage the longer plan is implemented it needs to be expectations about a review. The length of time monitored and processes put in place to ensure taken for a review has been an ongoing concern there is no assumption that the person, their given it can be from six to nine months. NSWTG support needs and choices in life are stagnant. has some clients with complex needs who do These may change and evolve over time. not have formal or informal supports, where the requirement to submit a review in writing disadvantages them. l. The adequacy of the planning process for rural and regional participants i. The incidence of appeals to the Administrative Appeal While access to services can be an issue in Tribunal (AAT) and possible regional and rural locations NSWTG has no measures to reduce the comment on the planning processes in these locations. number
NSWTG hopes the introduction of draft plans, m. Any other related matter improved practice of planners and improved engagement in the planning process could The Public Guardian has difficulty being listed reduce the number of AAT appeals. as a contact for the NDIS or having their legal authority recognised. This may result in the Appeals to the AAT cannot take place until the guardian not being informed or involved in the internal review of the decision has been planning process, not receiving a copy of the completed by the NDIA. So a clear timeframe plan until after the plan is established, and in and information about the internal review of some cases not at all. decision process, would assist participants. As guardians or financial managers, NSWTG
j. The circumstances in which often experiences problems with the NDIS not sharing information about the participant or their plans could be automatically plan and not liaising appropriately if there are rolled-over any issues or concerns regarding clients. This limits our ability to ensure clients are not paying If a participant and their stakeholders are for services or supports that are already funded satisfied that a roll-over would still meet their
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in their plan, and that if a need arises we know very difficult. NSWTG has financial what they have available in their NDIS funding. management clients that have encountered barriers in this process. Case examples Where the Public Guardian is appointed to 1. A guardian provided a copy of the represent NDIS participants, the SIL Guardianship order to the NDIA in October arrangements are often the subject of the 2018; the guardian did not receive any further referrals through the CSIR process. There is a contact or information. After following up lack of clarity about how SIL is determined. multiple times the guardian was informed by Where NSWTG is the financial manager it is NDIA that there was no registered Order. The unclear who chooses the SIL provider when the person’s plan expired in November 2018, it was client is unable to do so themselves or does not not extended, no new plan was made, and the have formal or informal supports to do so on guardian was not contacted. The guardian re their behalf. sent the order in March 2019 at the NDIA request. They were then asked to go to a local NDIA office to provide their personal The lengthy delays in the approval process identification. It was then NSWTG found that the have caused distress and financial loss to some participant plan had expired. clients. In particular, clients who cannot be discharged from hospital without SDA and SIL funding may experience financial hardship during the approval process where they are
- A Guardianship Order was emailed to the incurring hospital fees. Young people in NDIA and uploaded onto the NDIA system. residential aged care are also not able to exit After confirming that the orders had been their aged care facility without SDA and SIL received by the NDIA, the guardian was still funding and may be financially disadvantaged refused a copy of the client’s plan. by the SIL approval process.
b. The vacancy management 3. A financial management client advised process, including its NSWTG that he wanted to buy a laptop. The client had an NDIS plan which was not available management and costs; to NSWTG at the time. We used the client’s personal funds to purchase the laptop. When Guardians have found that NDIA is often we were given a copy of the NDIS plan it reluctant to recommend any providers. A more included funds for the purchase of a laptop to central vacancy list may help ensure efficient support the client’s education needs. transition and placement of participants.
c. The funding of SIL
Supported Independent
In the experience of NSWTG when appointed Living (SIL) as guardian, the level of funding for behaviour support in the SIL funding is often inadequate. It
a. The approval process for does not routinely allow for the full process of behaviour support to occur, including:
access to SIL developing behaviour support plans
training staff in the implementation of The SIL application process is lengthy and plans
complicated. There is a need to provide a monitoring, review, and allocated hours
significant amount of evidence that can be for 1:1 counselling for the person. The inconsistent between planners. This leads to counselling may be required due to the significant cost, drain of resources, and time in development of trauma that is related to obtaining further assessments. Where participants do not have formal or informal supports to articulate their needs the process is
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the ‘behaviour of concern’. This means signed, exposing participants with limited that plans can remain stagnant. capacity and supports to this risk.
Discussions about restrictive practices with Many clients under a financial management or NDIA, in the context of intensive supported SILs guardianship orders are viewed as having where 2:1 or 3:1 ratio of supports, is constantly challenging behaviours in addition to their challenged. These require detailed behaviour complex needs. These clients also have varying support plans to justify how the ratio of supports capacity to communicate effectively and may will deliver reasonable and necessary supports. exhibit distress, anger or frustration through behaviours which could be considered Where NSWTG performs the role of financial inappropriate. Furthermore, clients who have manager, concerns have arisen where clients NSWTG appointed as either financial manager attempt to complete the funding tool, however or guardian as decision makers may have lack the support needed to assist them to limited or no support networks in place. complete it accurately. The value of a participant’s package does not form part of their estate and therefore are not
d. Any related issues. administered by NSWTG. NSWTG represents a small but significant During consultation forums between the former cohort of people with complex support needsNSW Department of Justice and NDIA, it was involved in the criminal justice system, noted that SDA is not the preferred option for particularly as guardian. This group face housing. The NDIA want planners to explore the significant challenges in receiving appropriate possibility of alternative housing in the first funding and supports that will enable a smooth instance. NSWTG clients may not be able to transition into the community. explore alternative options due to time limitations (e.g. exiting the justice system or Some of these issues include: discharge from hospital) or the complexity of
their needs, which cannot be met in a limited NDIS supports provided while in
community setting. prison. Justice Health and Corrective Services do not have clinicians and other resources to undertake clinical NSWTG financial management clients do not assessments and reports for NDIS have the legal capacity to enter into contracts or
agreements related to their estate. Equally, transition planning being delayed or not
clients for whom we are appointed guardian occurring due to inconsistent information with authority to make health and lifestyle regarding what can be provided by the decisions cannot sign contracts relating to these NDIA
functions. If a client does contravene the Order difficulty conducting assessments
by signing an agreement which relates to the required by the NDIA to support NDIS functions where we are appointed, this contract applications, plan reviews and SIL would not be valid. quotes. Without these assessments funding cannot be obtained and service Service agreements currently outline the rights support and accommodation will not be and responsibilities of both the client and their provided. Further, SIL quotes will not be service provider including clauses relating to processed by NDIA unless the person client behaviour, complaint and exit processes. has secured ‘bricks and mortar’. This is Should a client breach the terms of an compounded as Housing NSW cannot agreement, for instance through their behaviour, support a housing application if there is the client can be exited from a service, placing no guarantee of supports in place and them at risk of homelessness or lacking guarantee of funding. We have at least essential services. The introduction of a free one client who has been detained market in disability support has created the unnecessarily due to this process. requirement that service agreements are
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I trust that the above information assists the
Parliamentary Joint Standing Committee with its
Inquiry.
Adam Dent
Chief Executive Officer
6 September 2019
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