Proposed Submission to

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600 https://www.aph.gov.au/Parliamentary Business/Committees/Joint/National Disability Insurance Scheme/ImplementationForecast

Due by 29th October 2021

Current Scheme Implementation and Forecasting consultation

Key contact Bronwyn Williams

The NDIS CMH Interface group The Victorian Statewide Clinical Mental Health (CMH) NDIS Interface group consists of NDIS Program Leads who are specialist clinicians based at tertiary Mental Health services across the state of Victoria. These NDIS Program Leads provide the interface between the NDIS and tertiary MH treatment providers. These clinicians do not provide NDIS services, but rather work with clinical staff groups as they support and treat people with mental ill-health and associated psychosocial disabilities.

The following is the CMH NDIS interface group submission to the Joint Standing Committee’s consultation regarding current scheme implementation and forecasting for the NDIS. This submission does not intend to represent the organisations with which the NDIS Program Leads are engaged, but rather represents the views of this collective group.

JSC Terms of reference

As part of the committee’s role to inquire into the implementation, performance and governance of the National Disability Insurance Scheme (NDIS), the committee will inquire into and report on current scheme implementation and forecasting for the NDIS, with particular reference to:

• The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding, including:
  • the availability of support outside the NDIS for people with disability (e.g. community-based or ‘Tier 2’ supports), The availability of Tier 2 support for people with Psychosocial Disabilities (PSD) is extremely variable. As you are aware, people with PSD were a late inclusion under the scheme, and it would appear that the support needs of this group were poorly understood at the time. People with PSD are a nonhomogeneous group and as such should benefit from a personalised approach. However, we know that many are at risk of homelessness or actually homeless, have specialised behavioural support

ii. the future of the Information, Linkages and Capacity Building grants program;

b. The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services;

When a person is hospitalised due to an exacerbation in their mental illness, it can rightly be assumed they may require increased psychosocial support to safely re-enter the community when they are ready for discharge. For non- NDIS participants this may mean a priority NDIS access request is submitted. For existing participants, an unscheduled plan review is usually requested to enable an update to the participant’s NDIS plan. Discharge is dependent on this increase in supports, and significant bed blockages occur when NDIS processes are protracted. The connection with the Health Liaison Officer is somewhat helpful and can at times speed up the NDIA process to arrange a plan review.

Where housing goals are to be added to the plan, substantial delays are experienced due to the lengthy and arduous process for assessment (i.e. need to have Allied health funded in the NDIS plan and then source an appropriately skilled OT); application (i.e. Support Coordinator needs to submit Home and Living application); endorsement (i.e. NDIA Home and Living panel need to consider and respond); and acquisition of housing (i.e. once approved, a suitable dwelling needs to be sourced and there are significant market issues around SDA or SIL supported housing for people with PSD).

The NDIA is a heavily bureaucratic organisation that has created multiple layers to protect its various access and plan endorsement mechanisms. This has led to unreasonably lengthy delays in key decision making which further delays hospital discharge. This relatively new stress created by the introduction of the NDIS is severely impacting Health facilities. Additionally, it

The reasons for variations in plan funding between NDIS participants

with similar needs, including:

• the drivers of inequity between NDIS participants living in different parts of
       Australia,
  

• whether inconsistent decision-making by the NDIA is leading to inequitable
  

       variations in plan funding, and
  

would appear the NDIA has little appetite to fund suitable home and living options for people with PSD.

It should be noted that the Health Liaison Officers (HLO), although charged with providing the interface between the health services and the NDIA and being expected to provide information and escalation to support hospital discharge, appear to have limited influence within the Agency. Also of concern is that their scope of practice includes Public Health rehabilitation services but fails to include Tertiary Mental Health bed-based rehabilitation services. This inequity substantially disadvantages NDIS participants with PSD who are seeking Supported Independent Living (SIL) options to enable their discharge from these short-term facilities. Without an escalation mechanism such as the HLO provides, the delays in getting a response from the Home and Living panel, or having a senior planner assigned to support a plan review are further exacerbated. Mental Health rehabilitation residents experience an anxious wait often leading to deterioration in their mental health. For many, SIL supported housing is the only suitable discharge option.

It would appear that the NDIA believe Tertiary MH services should remain responsible for housing and supporting all NDIS participants with PSD who have significant 24-hour person to person support needs. These residential services are simply not resourced adequately or set up as a long-term option for the many consumers who require a higher level of PSD support. The NDIS is charged with providing disability related support to people with PSD but continue with discriminatory behaviour towards this group, often refusing to take responsibility for the reasonable and necessary supports that would enable them to live anything resembling an ordinary life.

In 2011 the Productivity Commission determined “any people with significant and enduring psychiatric disabilities have the same day-to-day or weekly support needs as people with an intellectual disability or acquired brain injury.” This determination does not reflect the experience and outcomes for people with psychosocial disability, especially when it comes to housing. In 2020 the Productivity Commission enquiry revealed that just 1.6% of NDIS participants with PSD received Specialist Disability Accommodation (SDA), which is much less than the predicted 6% across all disabilities (pp. 992-993). The NDIA’s data report on participant outcomes released in June 2020 indicates that participants with Psychosocial Disabilities (PSD) had a tendency for poorer baseline outcomes when compared with participants with intellectual disabilities, and other disabilities overall (p.147). Of all cohorts, these people were the least likely to live in a private home (owned or rented) and much less likely to be in paid employment. Participants with PSD were significantly less likely to have informal supports, or even

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connections with family and friends. Overall, we know that health outcomes for people with PSD are much poorer than the general population, and that these poorer outcomes can be linked to a range of health and social support disparities (AIHW 2020). These findings are consistent with the experience of our staff who are working every day with NDIS participants and non-participants living with Psychosocial Disabilities across our programs.

iii. measures that could address any inequitable variation in plan funding; The NDIA needs to seek a better understanding of the complex support needs of some NDIS participants living with PSD. An openness to expansion of SDA and SIL supported options for this group, along with a willingness to take responsibility for disability related home and living support for this group are required.

d. How the NDIS is funded, including: i. the current and future funding sources for the NDIS, ii. the division of funding between the Commonwealth, States and Territories, and iii. the need for a pool of reserve funding; e. Financial and actuarial modelling and forecasting of the scheme, including: i. the role of insurance-based principles in scheme modelling, and ii. assumptions, measures, and methodologies used to forecast and make projections about the scheme, participants, and long-term financial modelling; Assumptions have been made about the numbers of likely eligible people with PSD. From data captured locally we have determined that at least 80% of consumers accessing these services are likely eligible for the NDIS. At this time around 40% have been found eligible and a further 40% are not willing or are still considering testing their eligibility. The NDIS appears to have underestimated the extent of support required by people who are found eligible for the scheme with a primary PSD. Martin Hoffman, when approached in late 2020 by the Victorian Statewide NDIS and Clinical Mental Health interface group about the needs of people accessing tertiary MH system, stated that the NDIA would not alter the SDA structure to better meet their needs.

“NDIA has a market stewardship role to assist the property market in developing sufficient stock of the correct type. Currently the NDIA does not believe a separate design category is required beyond those that are currently defined within the SDA Rules, noting SDA is not for the purpose of providing a ‘containment’ model of accommodation. Consideration is always given to SDA eligible participants as to the most appropriate mix of residents required, including where there may be a requirement to live alone.”

Instead he indicated that much of their home and living support would be the responsibility of the state.

“Accountability for the provision of the large majority of housing supports remains with State and Territory governments. The NDIS Medium Term Accommodation (MTA) Operating Guideline specifies that MTA is only available for the purpose of funding fixed term accommodation when a participant has an identified long term housing solution. It is not

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designed to operate beyond a 90 day period or where there is not a long term housing solution for a participant.” f. The measures intended to ensure the financial sustainability of the NDIS (e.g. governance, oversight and administrative measures), including: i. the role of state and territory governments, and the Disability Reform Ministers Meetings, ii. the arrangements for providing actuarial and prudential advice about the scheme, and iii. the way data, modelling, and forecasting is presented in public documents about the NDIS, (e.g. NDIS Quarterly Reports and Reports by the Scheme Actuary), and iv. measures to ensure transparency of data and information about the NDIS; g. The ongoing measures to reform the scheme including: i. the new early childhood approach, including whether or how early intervention and other supports intended to improve a participant’s functional capacity could reduce their need for NDIS funding, and ii. planning policy for personalised budgets and plan flexibility; and h. Any other related matters. The following information contains important considerations in relation to people living with Psychosocial Disabilities, as a response to consultations regarding the NDIA’s new Home and Living policy and Supported Decision Making policy in September 2021.

Submission regarding the Home and Living Policy Survey The NDIA’s draft of a new Home and Living policy should be seen as an opportunity to address the inequities experienced by NDIS participants with PSD. The following response is aligned to the various elements of the online survey and pertains to people with a psychosocial disability.

Response aligned to: a. Changing the conversation.

We are supportive of a change in the conversation regarding a person’s home and living situation. Home and Living supports should be individually tailored to a participant’s needs. Flexibility in design and a willing market are required to achieve this.

Currently, NDIS participants with Psychosocial Disabilities (PSD) with high and complex support needs are denied NDIS funded home and living supports more often than participants with other disabilities (Productivity Commission 2020, pp 992-993). Instead, they are frequently forced to live in Supported Residential Services (SRS) that are ill-equipped to manage complex support needs, boarding houses rife with illegal activities, or become homeless. Private rental is commonly inaccessible for many of these participants due to cost, and also due to barriers related to their psychiatric condition and associated behaviours of concern (NDIA 2020, p.147). Having a conversation about home and living options with NDIS participants who have PSD needs to lead to some concrete and attainable solutions. Current options are very limited.

In relation to Individual Living Options (ILO)

where the focus is on a private arrangement between the provider and the participant, it leaves the participant more vulnerable to exploitation. There needs to be a conversation about how we can strengthen safeguards for NDIS participants. Having dedicated consumer advocates, independent Support Coordinators, and Recovery Coaches may provide some monitoring of these relationships.

Recommendation: If the NDIA is to have a conversation with NDIS participants who have PSD, they need to be prepared to support suitable solutions.

b. Supporting you to be an informed and empowered consumer;

Improving communication with NDIS participants about their home and living options is a sound idea. However, many people with significant psychosocial disabilities find they need someone to work through the options with them. Support Coordinators and Recovery Coaches have provided vital support for these NDIS participants up to now. Many people with PSD lack the informal supports to guide them along the journey to explore their home and living options. They have become separated from family because of their Psychiatric conditions. Another issue for NDIS participants with PSD is that they experience fluctuations in their mental state that often see them hospitalised for several weeks to months at a time. In general, maintaining their accommodation can be challenging under these circumstances. An Individual Living Option (ILO) arrangement will foreseeably be more difficult to maintain, due to the dependence on another party to manage such uncertainty. The challenging behaviours experienced due to fluctuations in the mental state of the participant, is known to fatigue and ultimately sever the relationship with their house mates.

Recommendations: Funded NDIS supports including Support Coordination and Recovery Coaches are a reasonable and necessary way to support NDIS participants with PSD to navigate home and living options and maintain their accommodation.

c. Expanding support for decision making;

Supported Decision Making is a necessary form of support for NDIS participants with PSD. it should be noted that people experiencing mental illness across their lifetime will have fluctuating ability to make informed decisions about their care, support, and housing needs. a flexible approach is required and may mean that these participants have periods under legal guardianship and administration orders.

d. Reforming the funding model;

Many NDIS participants with PSD have been denied funding that would enable them to live in supported housing options such as Specialist Disability Accommodation (SDA) or SIL homes. Additionally, the SIL and SDA application processes are “unduly lengthy and complex” as outlined by the Joint Standing Committee (JSC

Independent Living Options (ILO)

We raise the following concerns in relation to ILO type home and living options for NDIS participants with Psychosocial Disabilities and complex support needs. These participants are likely to:

• Find it difficult to identify a suitable host.

Reasons may include: limited capacity/skill to engage with others; likelihood of being exploited by others; behaviours of concern causing safety issues for themselves and/or others; paranoia associated with their mental illness; lack of informal supports.

• Be vulnerable to exploitation by potential hosts

Reasons may include: Lack of boundaries in social interactions; previous institutionalization and blind acceptance; having prescribed medications that are sought after by others such as Benzodiazepines; lack of safeguards in private arrangements; lack of oversight and monitoring of private hosts; financial incentives offered by NDIA to host someone who may be a less desirable choice as a living companion; lack of informal supports. Conflict of interest is more likely to arise in ILO arrangements, where the other organizational safeguards are not in place.

• Experience instability in their home and living arrangements

Reasons may include: Challenges with their personal decision making around suitable hosts; Host fatigue due to incapacity to manage behaviours of concern and/or lack of awareness of what they signed up to; Lack of regulation and oversight provided by NDIA in relation to hosts; landlords not obligated to continue arrangements; lack of informal supports; frequent hospitalisations.

SRS appears to remain the only option for a significant number of NDIS participants with PSD (Andrews 2016). Many SRS providers have been observed to take advantage of NDIS participants by spending their core support funding, without providing an appropriate level of care in return. NDIS participants with PSD will continue to be vulnerable to the SRS proprietors if their home and living options are so limited under the NDIS.

Home and Living Options for NDIS Participants with Psychosocial Disabilities

SIL home providers are also taking advantage of NDIS participants with PSD, by inviting them to stay at their homes and exhausting their core NDIS budget to fund their supports, even in the absence of an SIL team endorsed Roster of Care. These participants are being told to find other accommodation when the funds in their NDIS budget run out, and the NDIA are often not willing to further fund the participant. This leaves the participant with no home and no NDIS funded supports, until a plan review is conducted, which can be weeks to months. Even when the plan is reviewed, many participants are not approved for SIL type supports and are at risk of physical and mental deterioration, and subsequent hospitalisation.

Consumer O was relinquished by their NDIS support workers to the emergency department of the local public hospital. The Support Coordinator had advised that this should occur as this participant had no further funding in their plan to pay providers for the level of care required for this participant. The NDIA did not review the plan in sufficient time to enable continuity of care. Additionally, the SIL team did not approve the SIL type supports required for this participant and they had a lengthy stay in hospital whilst the SIL decision was reviewed. A new provider was then required.

The Joint Standing Committee (JSC) has recommended clarification of the access to SIL for people with PSD to improve their experience with the NDIS (JSC 2020, p. 33).

Recommendations:

We provide the following recommendations in relation to home and living options for NDIS participants with Psychosocial Disabilities (PSD) and complex support needs.

• Stable long-term home and living options that include disability supports that adequately address the specialist needs of people with PSD and associated behaviours of concern.

• Individual (single occupant) living options with high-level supports for some. A significant number of people with PSD cannot live with others.

• Shorter term capacity building support in transitional housing to meet the gap between inpatient settings, including hospitals and short-term bed-based Community Care Units (CCUs) delivered by Tertiary Mental Health services and SIL homes.

• Clear regulation of providers, and potent oversight processes to reduce and eventually eliminate current exploitation of people with PSD.

• Co commitment and co investment in a solid housing market response for people with psychosocial disabilities.

• Sustainable home and living options that do not leave people vulnerable to exploitation.

• Options to be created for Lived experience co-designed supported living.

e. Improving choice and control through flexible budgets;

Improving choice and control with more flexible budgets appears to be theoretically sound. However, we recommend caution regarding the length of time between plan reviews, and the risk of budgets being exhausted before they can be reviewed. Careful budget monitoring is required and increased responsiveness of the NDIA to requests for unscheduled plan reviews. Support Coordinators and Recovery Coaches are well placed to assist with the monitoring of NDIS budgets. It is concerning to note that many participants with PSD are having their support coordination hours reduced or removed entirely from their NDIS plans. This leaves people with no one to ensure they are utilising their plan effectively.

Case example: Consumer J was hospitalised recently, and the ward Social Worker raised alarm that this NDIS participant had their Support Coordination funding removed from their plan in the preceding months. Despite an appeal via the Local Area Coordinator, the decision was upheld. This participant had not been able to utilise their funded supports effectively in the absence of a Support Coordinator. This had led to their deteriorating mental health, due to lack of disability supports. When this situation was escalated to the NDIA, the response was that they had already reviewed their decision. No further evidence was considered. This person continues with a lack of disability supports.

Recommendation: Where plans are extended, it is essential that utilisation of supports is assisted and monitored. Support Coordinators are best placed to manage the monitoring of NDIS participant plans where people have Psychosocial Disabilities. This is a reasonable and necessary support for the vast majority of NDIS participants with PSD.

f. Engaging the market and driving innovation;

It is well known that many SRS and SIL home providers are exploiting NDIS participants who reside at their facilities. This has been raised numerous times with the NDIS Q &S commission, with no consequence to the offending providers. Meanwhile NDIS participants in SRS and SIL accommodation are left vulnerable. There is a continuing risk of providers gauging NDIS plans unless the regulation of providers is more effective.

Consumer F was residing at an SRS. When they became an NDIS participant, the SRS provider told them they would need to use their NDIS funding to pay for the supports that they already had in place as a resident at the SRS. This meant the participant had no choice or control over how they engaged their disability supports. The Mental Health Case manager observed that the SRS provider was not engaging the participant in capacity building activities but rather continuing to do everything for the participant. This was not in alignment with the participant’s goals. The participant did not make a complaint for fear of losing their accommodation.

Participant G was residing at an SRS. Once they became an NDIS participant, they went ahead to select suitable providers of support. The SRS proprietor asked this participant to leave the SRS as they stated that the participant had not selected the SRS as the provider of their core daily supports.

Recommendations

We recommend and support the tightening of regulations around NDIS provider conflicts of interest;

and strengthening the NDIA Quality and Safeguards response to complaints about NDIS providers, even when those complaints are made by non-NDIS provider advocates on behalf of participants.

Robust Housing

There is a notable lack of robust housing availability to meet current needs. SDA providers appear reluctant to build homes for participants with PSD and complex behavioural support needs. It is also apparent that SDA providers with existing stock are denying applications from people with PSD and complex behavioural support needs, as they are not their preferred clients. Much of the existing stock is also not in areas of choice for participants. There are extensive wait times for SDA housing, and SIL homes as an interim option are too insecure and inappropriate for people with high levels of complexity.

Provider of last resort

Where an NDIS participant is unable to locate a suitable support, the NDIA is responsible to arrange for a provider of last resort to meet the participants support needs (NDIA 2016). This does not seem to be occurring.

Consumer R has approval from the NDIA for SDA. However, all efforts to locate a suitable SDA provider have not eventuated in any accommodation. As a result of this market failure, the Tertiary Mental Health inpatient service is compelled to keep this Consumer in their care, even though they are medically cleared for discharge. Consumer R’s Support Coordinator was able to locate a SIL home as an interim solution, however the NDIA’s SIL team did not approve the SIL quote, and the participant was forced back to the inpatient ward. SDA providers have declined all applications.

There is a noticeable absence of the provider of last resort, as described in the NDIS Market Approach (2016). It would appear to us that the NDIA views the tertiary Mental Health inpatient unit as this provider of last resort. Due to the restrictive and acute nature of the inpatient environment, this is grossly inappropriate and constitutes a breach of the participant’s human rights.

Summary

We are glad that the NDIA are seeking our advice regarding their new Home and Living policy proposal. However, we believe the proposal fails to address the specialist needs of the NDIS participants with Psychosocial Disabilities (PSD). NDIS participants with Psychosocial Disabilities (PSD) and complex behavioural support needs are particularly disadvantaged by a lack of agreement regarding who is responsible for the provision of disability related home and living supports. From the available literature, it seems clear that the National Disability Insurance Agency has a responsibility to fund these supports where there are no more cost effective and existing supports available. For many participants, this is not currently occurring. Even when funded these participants are challenged by market reluctance. We suggest the new Home and Living policy focus on improving the processes and timeliness of SIL and SDA decisions; strengthening and expanding the powers of the

References

Andrews, K 2016, Pension-Level Supported Residential Services and their Influence in the Occupational Participation and Recovery of Residents with Mental Illness, Unpublished thesis for Master of Biomedical Science, Monash University

Australian Government Productivity Commission Disability Care and Support 10 August 2011 https://www.pc.gov.au/inquiries/completed/disability-support/report

Australian Government Productivity Commission Inquiry Report Volume 3 No.95, 30 June 2020 https://www.pc.gov.au/inquiries/completed/mental-health/report

Australian Institute of Health and Welfare 2020, Australia’s Health 2020: Physical health of people with mental illness https://www.aihw.gov.au/reports/australias-health/physical-health-of-people-with-mental-illness

Joint Standing Committee 2020, Joint Standing Committee on the National Disability Insurance Scheme report into Supported Independent Living, https://www.aph.gov.au/ParliamentaryBusiness/Committees/Joint/NationalDisabilityInsuranceScheme/Independentliving/Report

NDIA 2016, NDIS Market Approach Statement of Opportunity and Intent file:///C:/Users/psifu/Documents/NDIS/PB%20Statement%20of%20Opportunity%20and%20Intent%20PDF.pdf

NDIA 2020, PB Participant Outcomes 30 June 2020 baseline, Chapter 5, page 147 https://data.ndis.gov.au/reports-and-analyses/outcomes-and-goals/participant-outcomes-report

Prepared by Bronwyn Williams – Eastern Health Mental Health NDIS Program Lead on behalf of the Victorian Clinical Mental Health NDIS interface group – September 2021

Submission regarding Supported Decision Making

We welcome consideration into support for decision making and value that the NDIA continue to deliver individualised support. However, some of the key messages within this paper continue to articulate the misunderstanding of psychosocial disability and associated complexity of decision-making support. There are several assumptions within this paper that do not reflect the experience of clinical mental health workforce working alongside people with psychosocial disability. It is important that moving forward the NDIA consider the unique difference for people with psychosocial disability, that it cannot be grouped with intellectual disability or acquired brain injury. Decisions on policy and procedure that fail to listen

Summary

• The idea of a person’s capacity for decision making is complex, and particularly variable for individuals with psychosocial disability.
• Support for decision making is nuanced and needs to be individualised. People with psychosocial disability benefit from relationships developed over time to enable effective support for decision making.
• The NDIA 2020, Participant Outcomes Report has identified that participants of the NDIS with psychosocial disability are more likely than other disabilities to have no friends other than family or paid staff. Identification of key supports requires careful and skilful assessment alongside the clinical supports.

Recommendations

• Intentionally safeguarding support for decision making over a person’s lifetime for people who experience psychosocial disability. This can best be provided through maintained NDIS funding to support decision making.
• There needs to be accessible resources available to inform decision making, including NDIS funded supports ensuring informed decision making.
• Consideration to maintain nominees to support decision making for people who are unable to engage with services. Ongoing relationship building between clinical services and NDIS providers is essential.

Discussion

1. A person’s capacity for decision making is complex, and particularly variable for individuals with psychosocial disability.

Decision making capacity may not be stable

Assessing the decision-making capacity for people who have psychosocial disability can be complicated and variable. A person’s ability to make decisions may not be consistent and is complicated by their disability. Completing an assessment on a person’s capacity to make decisions at access or planning as discussed in this paper will not be accurate or fair. For a person with a psychosocial disability, they can experience episodic fluctuations in symptoms and changes in the way they think. And therefore, have periods of time where they may lose sight of their goals. While the Mental Health Act safeguards high risk decision making, decision making that supports recovery and wellbeing can have just as much impact on a person’s long-term disability and supports. Therefore, the NDIA needs mechanisms to safeguard decisions they may make when they are unwell or in early stages of recovery from an acute episode. This cannot be made on a single assessment of their capacity to make decisions.

Example 1: A person who experiences schizophrenia can be well for long periods of time, at these times is able to have clear and positive goals associated with social connection. However, at a time of increased paranoia

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refuses all supports to engage in social connection and given the symptoms of their disability, makes active choices to disengage with supports and connections. On improvement with paranoia, supports are already removed, and connections achieved in the past are lost. This results in increased isolation and disconnection.

Without supports to hold the goals and decisions made while able to make decisions, and skilfully support decision making when the participant’s ability is limited, the risk of deterioration and further disability is increased, resulting in greater long term demand on the NDS.

Engaging in decision making process can be challenging In addition to fluctuating needs for support around decision making, the functional impairments that make consumers NDLS eligible are the same reasons they struggle to engage in decision making process even when they have capacity

• Difficulties establishing trust, engaging with others and misinterpreting events
• Impaired concentration, decision-making and organisational skills, motivation and judgement
• Difficulty coping with situations involving stress, pressure or performance demands
• Impulsivity
• Slowed thoughts
• Understanding information clearly from others
• Engaging with or understanding written material
• Managing correspondence
• Holding reciprocal conversations
• Articulating needs and seeking help
• Being understood by others
• Regulating emotions and managing interpersonal conflict
• Navigating service systems
• Lack of informal networks

Example 2: A person who experiences major depression, when well is independent in all areas of self-care, and has a strong value in their personal presentation, however at a time of relapse does not want to engage in any self- care activities. They do not have the ability due to their symptoms to ask for help, even though these tasks are important to them. This results in decreased participation and limited engagement in everyday activities.

Supports that ensure a person’s voice is heard are required so that a decision can be supported. Unless participants understand choices available and are able to articulate that need at times of most need they will not seek these. This can only be achieved with support from existing trusted supports. Many people with psychosocial disabilities will not be able to access the supports they need when needed the most. With deterioration in mental state there is a risk of further disability, resulting in greater demand on the NDLS.

Access to resources to understand choice

It is important that there are sufficient resources to support informed decision making. It is great that the NDIA are considering what resources are required for participants and their supports, to support decision making.

Resources available on the internet or via phone are not accessible to a significant proportion of the population with psychosocial disability.

A quick review of consumers of our community clinics found:

• Only 50% of consumers have reliable access to a phone (25–35% have a smartphone, 10–30% have landline or other mobile phone).
• This dramatically reduces for the people who are engaged with our homeless and outreach services who have greater disability. Less than 10% of this consumer group have access to a page.
• 10–15% have access to tablets/computers and Wi-Fi
• 50 –75 % have difficulty engaging with phone (won’t answer, difficulties with concentration, comprehension and memory, paranoid and/or delusional ideas connected to phone)

In the current pandemic crisis, those that do have access to tablets and computers prioritise data use for connection and key supports. Without accessible, reliable information that people can apply to their own needs, a person cannot make an informed decision.

Relationships in support of decision making are important

Consideration of information provision needs to be more diverse and available in individually tailored ways. Given the fluctuation in needs of people with psychosocial disability, having key relationships is important. While the Local Area coordinators are skilled at information provision, many people who experience psychosocial disability have difficulty establishing trust, engaging with others and misinterpreting events. Their ability to maintain focus on key goals can be impaired. Therefore, long term relationships and understanding of a person over time is important to support decision making, particularly on important choices associated with support and social participation.

Example 3:

A Participant had a support coordinator who supported decision making on the types and implementation of supports. They were able to maintain progress on goals of the participant despite fluctuations in capacity to make decisions. At a planning meeting, this funding was ceased. The participant was not able to make decisions without the support of the coordinator and the essential support network ceased. The participants mental health deteriorated and required hospital treatment.

Supportive relationships are able to help support decision making. The Local Area Coordinators are not able to build the essential relationships that these participants need to support decision making. There needs to be an opportunity for a participant to build a relationship with support. When supports are in place, a person is more capable and confident to make decisions, even when their ability may be challenged.

• Withdrawal of these supports can increase disability, resulting in greater demand on the NDS, including an increase in unscheduled reviews and increased funding in future plans.

Nominees play a key role in supporting decisions and engagement of people with psychosocial disability. While it is important to keep reviewing systems where people are nominated to act on another’s behalf, it is also important to ensure that these roles continue to support people who need nominees.

Example 4. A person with schizophrenia lived in squalor and could not participant in the tasks associated with maintaining their home. This resulted in them leaving their home for extended periods, impacting on increased symptoms, poor nutrition and self-care, and limited positive community engagement. A clinician had discussed NDIS with the consumer who agreed to the supports but would not engage in the process. The clinician was able to act as a nominee, and NDIS services were initiated. With NDIS supports the participant enjoys being at her clean home, eats nutritious food, looks after her self-care and engages socially within the community.

Without nominee appointments, many people who have would most benefit from NDIS supports to engage in the community will not have access initiated by clinical services. A person with psychosocial disability needs active support to understand what NDS can offer, understand what their disability is, and stepped through the process of access. The nature of a psychosocial disability means they will need more support to be stepped through the process at times.

3. NDIS Participants with psychosocial disability are more likely than other disabilities to have no friends other than family or paid staff. Identification of key supports requires careful and skilful assessment alongside the clinical supports.

While we acknowledge that key supports can be informal, we rarely find people with significant psychosocial disability have good informal support networks. A participants psychosocial disability can have a significant impact on social engagement resulting in limited social connection and reduced informal support networks. Many relationships that a person with a psychosocial disability has may already be strained. Often a participant’s informal support network will not be their family member. Sometimes key supports can be a person that does not engage in positive behaviour. Or an identified informal support may be a neighbour that checks on them occasionally but is not in a position to have a role in supporting decision making. Additionally key informal supports may not have the ability to support decision making.

Example 5. A dependent participant was living with their parent. The participant’s parent had responsibility to support decision making. However, The parent was also an NDS participant, and needed support with decisions

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associated with nutritious meals. The parent did not have the capacity to provide support for decisions around meal choice.

Clinical services often become the primary support for making decisions, however these services can change rapidly as a participants transition between services. While it is important to identify key supports and keep this record, it is important to identify these informal supports carefully and skilfully and consider their capacity and ability to support the participant.

Reference

NDIA 2020, PB Participant Outcomes 30 June 2020 baseline, Chapter 5, page 147 https://data.ndis.gov.au/reports-and-analyses/outcomes-and-goals/participant- outcomes-report

on behalf of the Victorian Clinical Mental Health NDIS interface group - September 2021