Submission 15 — NSW Trustee & Guardian — Supported Independent Living

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Submission 15

Submission to NDIS Planning, Supported Independent Living Inquiry

September 2019

  NSW Trustee1'1)

GOVERNMENT & GuardianNSW

Role of NSW Trustee & Guardian

NSW Trustee & Guardian (NSWTG) is a statutory agency within the NSW Stronger Communities Cluster. It supports the Chief Executive Officer of the Public Guardian and the Public Guardian to protect the rights, dignity, choices and wishes of the people of New South Wales. Our services support and protect some of the most vulnerable members of the NSW community, as well as supporting people at critical moments in their life.

Where the Public Guardian Is Appointed As Guardian

Where the Public Guardian is appointed as guardian, NSWTG is involved in the NDIS pre-planning and planning process, including releasing information to National Disability Insurance Agency (NDIA) planners and attending meetings. NSWTG negotiates with the NDIA on behalf of the participant about what is accepted as reasonable and necessary rights, supports and seek reviews of plans when needed. The Public Guardian can be appointed to make decisions about services provided to the participant through the NDIS plan.

Guardians advocate for the participant to receive funding for appropriate services and support, while negotiating with support coordinators about the selection of the most appropriate service provider for the participant. Guardians can decide which service providers will provide a service to the participant.

We do this by providing independent and impartial financial management and guardianship services that supports clients and helps them manage their health, lifestyle and financial affairs.

We are appointed for people with cognitive impairment which impacts their ability to make decisions in different areas of their lives. We can be appointed as financial manager or guardian by the NSW Civil and Administrative Tribunal (NCAT) or the Supreme Court.

Financial management orders appoint the NSW Trustee where there is no other appropriate option available. The Public Guardian is the ‘guardian of last resort’ and will only be appointed if it is determined a guardian is needed and a suitable private guardian - usually a family member or friend of the person who is willing to take on the role - cannot be identified.

The decision-making delegations are separated to ensure that staff employed to make guardianship decisions are different to those who make financial management decisions. This limits the influence a guardian or financial manager has over one client and removes any conflict of interest when making decisions.

Relationship With NDIS

NSWTG also reviews NDIS service and 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 4500 financial management clients with an NDIS plan in place.

NDIS Planning

personal 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 believes the CSNP was a much-needed have been underfunded in their NDIS plans, we response pathway. It can however be difficult to because of the lack of experience, expertise or convince mainstream planners to make a referral qualifications of the planners. For example, 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 participants with complex needs. And physiotherapy services between July 2019 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

Given the cognitive impairment and complex
e. Participant involvement in needs of NSWTG clients, they require ongoing
to be allocated to experienced NDIA
The inclusion of decision making support for participants with cognitive disabilities would ensure participants maximise their involvement in the development of their plans. The involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding for a decision-making support and capacity development to be included in a participant’s plan. Currently, the responsibility to establish what support the participant needs to be fully involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have observed instances where planners and support coordinators are focussed on seeking advice from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by stakeholders this should reinforce the need for capacity building to be included in the participant’s plan to maximise the person’s autonomy. The inclusion of capacity building in these cases does not reflect NSWTG’s experience.

Between November 2018 and August 2019, the Public Guardian has made 24 referrals to the
Critical Service Issues Response (CSIR).
The introduction of draft plans would give the person, their family, supporters, advocate or guardian the opportunity to see if everything has been covered in the proposed plan and amend where necessary. This could also reduce the need to request reassessments and be a more efficient use of everyone’s resources. Where NSWTG is the financial manager, this could also provide an opportunity to identify supports currently paid by the individual that should be 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 reassessments are requested and do not occur.
it is unclear whether this is because of a lack of

number of planners relative to the number of plans, it seems that an escalation process has been introduced for clients who are participants that experience delays. These delays often leave the participant in crisis or without support.

While NSWTG does not have insight into the number of planners relative to the number of plans, it seems that an escalation process has been introduced for clients who are participants that experience delays. These delays often leave the participant in crisis or without support.

No comment.

c. The ongoing training and           
  professional development of    

funding for a high level of support coordination and to be allocated to experienced NDIA
draft plans have not displayed the ability to understand and appropriately address the individual needs.
The inclusion of decision making support for participants with cognitive disabilities would ensure participants maximise their involvement in the development of their plans. The involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding for a decision-making support and capacity development to be included in a participant’s plan. Currently, the responsibility to establish what support the participant needs to be fully involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have observed instances where planners and support coordinators are focussed on seeking advice from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by stakeholders this should reinforce the need for capacity building to be included in the participant’s plan to maximise the person’s autonomy. The inclusion of capacity building in these cases does not reflect NSWTG’s experience.

d. The overall number of            
  planners relative to the            

demand for plans
to complete the plan. Providing
an avenue of contact for urgent matters would
asist.
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 reassessments are requested and do not occur.
it is unclear whether this is because of a lack of

number of planners relative to the number of plans, it seems that an escalation process has been introduced for clients who are participants that experience delays. These delays often leave the participant in crisis or without support.

While NSWTG does not have insight into the number of planners relative to the number of plans, it seems that an escalation process has been introduced for clients who are participants that experience delays. These delays often leave the participant in crisis or without support.

No comment.

e. Participant involvement in the planning processes and funding for a high level of support coordination and to be allocated to experienced NDIA
The inclusion of decision making support for participants with cognitive disabilities would ensure participants maximise their involvement in the development of their plans. The involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding for a decision-making support and capacity development to be included in a participant’s plan. Currently, the responsibility to establish what support the participant needs to be fully involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have observed instances where planners and support coordinators are focussed on seeking advice from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by stakeholders this should reinforce the need for capacity building to be included in the participant’s plan to maximise the person’s autonomy. The inclusion of capacity building in these cases does not reflect NSWTG’s experience.

c. The ongoing training and           
  professional development of    

funding for a high level of support coordination and to be allocated to experienced NDIA
draft plans have not displayed the ability to understand and appropriately address the individual needs.
The inclusion of decision making support for participants with cognitive disabilities would ensure participants maximise their involvement in the development of their plans. The involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding for a decision-making support and capacity development to be included in a participant’s plan. Currently, the responsibility to establish what support the participant needs to be fully involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have observed instances where planners and support coordinators are focussed on seeking advice from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by stakeholders this should reinforce the need for capacity building to be included in the participant’s plan to maximise the person’s autonomy. The inclusion of capacity building in these cases does not reflect NSWTG’s experience.

d. The overall number of            
  planners relative to the            

demand for plans
to complete the plan. Providing
an avenue of contact for urgent matters would
asist.
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 reassessments are requested and do not occur.
it is unclear whether this is because of a lack of

number of planners relative to the number of plans, it seems that an escalation process has been introduced for clients who are participants that experience delays. These delays often leave the participant in crisis or without support.

While NSWTG does not have insight into the number of planners relative to the number of plans, it seems that an escalation process has been introduced for clients who are participants that experience delays. These delays often leave the participant in crisis or without support.

No comment.

e. Participant involvement in the planning processes and funding for a high level of support coordination and to be allocated to experienced NDIA
The inclusion of decision making support for participants with cognitive disabilities would ensure participants maximise their involvement in the development of their plans. The involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding for a decision-making support and capacity development to be included in a participant’s plan. Currently, the responsibility to establish what support the participant needs to be fully involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have observed instances where planners and support coordinators are focussed on seeking advice from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by stakeholders this should reinforce the need for capacity building to be included in the participant’s plan to maximise the person’s autonomy. The inclusion of capacity building in these cases does not reflect NSWTG’s experience.

c. The ongoing training and           
  professional development of    

funding for a high level of support coordination and to be allocated to experienced NDIA
draft plans have not displayed the ability to understand and appropriately address the individual needs.
The inclusion of decision making support for participants with cognitive disabilities would ensure participants maximise their involvement in the development of their plans. The involvement of key people, such as family members, in the creation of a plan suggests planners needing to consider including funding for a decision-making support and capacity development to be included in a participant’s plan. Currently, the responsibility to establish what support the participant needs to be fully involved in the NDIS planning and implementation process is determined by the NDIA and their planners. Guardians have observed instances where planners and support coordinators are focussed on seeking advice from stakeholders rather than the participant to complete the plan. Where all the information for the plan is sought from or provided by stakeholders this should reinforce the need for capacity building to be included in the participant’s plan to maximise the person’s autonomy. The inclusion of capacity building in these cases does not reflect NSWTG’s experience.

d. The overall number of            
  planners relative to the            

demand for plans
to complete the plan. Providing
an avenue of contact for urgent matters would
asist.
in crisis situations there needs to be a way of expediting this.

g. The reassessment process,

including the incidence and impact of funding changes

The delays for reassessment of plans for some participants have meant that reassessments are not performed until the original scheduled review date. The financial burden on participants

The delay in the review of the initial YPIRAC when their plan funding runs out can leave them out of pocket by thousands of dollars.

Where NSWTG is financial manager, we have observed that initial Young People In Residential Aged Care (YPIRAC) plans had errors. For example, services provided by the aged care facility as part of aged care support were missing from the funding package. The resolution of these funding adjustments continues. NDIA report that there is a backlog for the review of the original plans. In many cases the plan review is overdue.

Currently NSWTG has identified approximately $200,000 owing to NSWTG clients who are participants in NDIS.

The appointment of YPIRAC-specific planners has significantly reduced errors in new plans. NSWTG understands that the backlog in reviewing initial plans is progressing slowly.

It is rare for service providers to be willing to carry on providing services when there is a gap in funding and the client is waiting for a review. The length of the waiting periods for the review to occur can result in anxiety for families, service providers and the person themselves. 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 losing their support services. Where the service provider is not receiving payment they may not be in a position to continue. This has limited the available options for these clients and reduced their choice and control.

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 allow for a review within a reasonable timeframe if there is a change in their needs and circumstances.

The cost of reports is high and comes directly from the person’s funds. This reduces what is available to spend on their actual support services. The lack of weight given to the person, their knowledge of the person’s support needs does not reinforce the dignity of the person.

k. The circumstances in which supporters/family and guardian about their longer plans could be introduced

Where NSWTG is appointed as guardian, it would assist if contact could be made with the planners directly to discuss review. Communicating with generic emails and calling a ‘1800’ phone number impedes efficient resolution.

There have been circumstances where, when appointed as the guardian, NSWTG has advocated for longer plans to increase confidence of the participant in the availability of stable supports. The circumstances where this would be appropriate are where the evidence is strong that no significant change in the participant’s circumstances is forecast. Where a longer plan is implemented it needs to be monitored and processes put in place to ensure there is no assumption that the person, their support needs and choices in life are stagnant.

These may change and evolve over time.

l. The adequacy of the planning process for rural and regional participants i. The incidence of appeals to the Administrative Appeal Tribunal (AAT) and possible measures to reduce the number

While access to services can be an issue in regional and rural locations NSWTG has no comment on the planning processes in these locations.

NSWTG hopes the introduction of draft plans, improved practice of planners and improved engagement in the planning process could reduce the number of AAT appeals.

Appeals to the AAT cannot take place until the internal review of the decision has been completed by the NDIA. So a clear timeframe and information about the internal review of decision process, would assist participants.

As guardians or financial managers, NSWTG often experiences problems with the NDIS not sharing information about the participant or their plan and not liaising appropriately if there are any issues or concerns regarding clients. This limits our ability to ensure clients are not paying for services or supports that are already funded.

j. The circumstances in which plans could be automatically rolled-over

If a participant and their stakeholders are satisfied that a roll-over would still meet their

Case examples

Where the Public Guardian is appointed to represent NDIS participants, the SIL Guardianship arrangements are often the subject of the referrals through the CSIR process. There is a lack of clarity about how SIL is determined.

Where NSWTG is the financial manager it is unclear who chooses the SIL provider when the client is unable to do so themselves or does not have formal or informal supports to do so on their behalf.

1. A guardian provided a copy of the

Guardianship order to the NDIA in October 2018; the guardian did not receive any further contact or information. After following up multiple times the guardian was informed by NDIA that there was no registered Order. The person’s plan expired in November 2018, it was not extended, no new plan was made, and the guardian was not contacted. The guardian re-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 identification. It was then NSWTG found that the participant plan had expired.

The lengthy delays in the approval process have caused distress and financial loss to some 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 incurring hospital fees. Young people in residential aged care are also not able to exit their aged care facility without SDA and SIL funding and may be financially disadvantaged by the SIL approval process.

2. A Guardianship Order was emailed to the

NDIA and uploaded onto the NDIA system. After confirming that the orders had been received by the NDIA, the guardian was still refused a copy of the client’s plan.

b. The vacancy management

process, including its NSWTG management and costs;

Guardians have found that NDIA is often reluctant to recommend any providers. A more central vacancy list may help ensure efficient transition and placement of participants.

c. The funding of SIL

Supported Independent Living (SIL)

a. The approval process for access to SIL

The SIL application process is lengthy and complicated. There is a need to provide a significant amount of evidence that can be inconsistent between planners. This leads to significant cost, drain of resources, and time in obtaining further assessments. Where participants do not have formal or informal supports to articulate their needs the process is very difficult. NSWTG has financial management clients that have encountered barriers in this process.

In the experience of NSWTG when appointed as guardian,

The level of funding for behaviour support in the SIL funding is often inadequate. It does not routinely allow for the full process of behaviour support to occur, including:

  • developing behaviour support plans
  • training staff in the implementation of plans
  • monitoring, review, and allocated hours for 1:1 counselling for the person. The counselling may be required due to the development of trauma that is related to
  1. A financial management client advised NSWTG that he wanted to buy a laptop. The client had an NDIS plan which was not available to NSWTG at the time. We used the client’s personal funds to purchase the laptop. When we were given a copy of the NDIS plan it included funds for the purchase of a laptop to support the client’s education needs.

NSWTG

NSWTG represents a small but significant cohort of people with complex support needs involved in the criminal justice system, particularly as guardian. This group face significant challenges in receiving appropriate funding and supports that will enable a smooth transition into the community.

Some of these issues include:

  • limited NDIS supports provided while in prison. Justice Health and Corrective Services do not have clinicians and other resources to undertake clinical assessments and reports for NDIS agreements related to their estate.
  • transition planning being delayed or not occurring due to inconsistent information regarding what can be provided by the NDIA
  • difficulty conducting assessments required by the NDIA to support NDIS applications, plan reviews and SIL quotes. Without these assessments funding cannot be obtained and service support and accommodation will not be provided. Further, SIL quotes will not be processed by NDIA unless the person has secured ‘bricks and mortar’. This is compounded as Housing NSW cannot support a housing application if there is no guarantee of supports in place and guarantee of funding. We have at least one client who has been detained unnecessarily due to this process.

Service agreements currently outline the rights and responsibilities of both the client and their service provider including clauses relating to client behaviour, complaint and exit processes. Should a client breach the terms of an agreement, for instance through their behaviour, the client can be exited from a service, placing them at risk of homelessness or lacking essential services. The introduction of a free market in disability support has created the requirement that service agreements are

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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