Submission to the Joint Standing Committee on the

NDIS; General Issues around the implementation and performance of the NDIS

Australian Community Industry Alliance Written by Associate Professor Nicole Brooke

CN 153 423 799

02 9264 7197

Level 13, 465 Victoria Avenue, Chatswood NSW 2067

Contents

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Introduction

Australian Community Industry Alliance (ACIA) welcomes the opportunity to provide this Submission to the Joint Standing Committee on the NDIS on General Issues around the implementation and performance of the NDIS.

Australian Community Industry Alliance

ACIA is the only peak body in Australia representing aged care, disability and community care focused on quality management in care and service provision.

ACIA is the national peak body representing community care and support providers, including private, not-for-profit, and charitable organisations. Nationally ACIA represents over 100 provider organisations, which collectively employ more than 150,000 FTE workers and supports more than 35,000 clients. ACIA also supports the disability and aged care sectors and works with government departments and authorities, including:

• State Disability Agencies such as Department of Family and Community Services, Ageing Disability and Home Care NSW, Department of Health Human Services Victoria and Disability Services QLD
• iCare NSW includes: Lifetime Care and Support Authority, Workers Insurance, Dust Diseases Care, Self-Insurance, and Builders Warranty.
• Lifetime Support Authority South Australia
• Motor Industry Accidents Board, Tasmania
• Transport Accident Commission Victoria
• Workers Compensations Schemes in multiple states
• Representation at the National Aged Care Alliance
• Department of Health
• Department of Social Services

ACIA’s vision is for community care and support industry known and respected as a provider of quality services. To achieve this vision, ACIA provides education, resources, and support to the industry and develops and administers its own quality standard and scheme (endorsed by the Joint Accreditation System for Australia and New Zealand JAS-ANZ).

ACIA seeks to be involved in the future development of policy and service reform, by bringing to the discussion our experience and expertise, including:

• Membership of over 100 provider organisations and individuals nationally, representing around 150,000 FTE workers and 140,000 clients;
• Membership across the disability, community care and aged care sectors;
• Specific expertise in the delivery of support to people living at home or in supported and shared accommodation arrangements;
• Lengthy provider experience of delivering individualised support according to the wishes of the individual in line with their funding:
• Experience in compensable and business markets;
• Experience in the development, implementation, and administration of quality certification systems that meets the national standards for disability services and home and community care standards (for example, the ACIMSS 2008, ACIS 2013, ACIS 2018 and now ACIS 4.0)):
• Advocate on aged care and disability issues;
• Expert representative on national committees representing our member issues:
• We have a proven track record of engaging positively with reform processes and working collaboratively with governments, providers, consumers, and interested stakeholders.

— ACIA 3

Australian Community Industry Standard

Australian Community Industry Alliance (ACIA) also operates under the framework of JAS-ANZ (similarly to NDS), the Australian Community Industry Standard (ACIS). ACIS has been operating across disability, home care, insurance and private or unfunded clients in Australia since 2008. ACIS has recently released its fourth edition of this based on a consolidation of the recent 22 sector reports on issues and challenges in the sectors, including Royal Commission findings (both interim and final). ACIS Providers are representative across all states and territories. ACIS certified organisations that have certified over the last three years include: 60,000 clients and 45,000 staff across home care, disability and community.

Profile of ACIS Providers:

4:5 provides provide community access, personal care, domestic services, social support, medication management, catheter care, wound management, bowel management and enteral feeding.

=

— ie =o =>

3:5 provide positive behaviour management and 1:3 engage with restrictive practices.

More than 4:5 providers have clients with brain and spinal injury, mental health, autism, cognitive impairment

jo Ro — | — | —3-—2-

1:2 ACIS provides are additionally credentialed against NDIS Standards

— | — — | —3-—a-—2-

Figure 1: % of services provided by and types of clients of ACIS Provides

% of Services Provided Types of Clients

perSStral ee acne SS UPPOPU eens : a 8 || venttsay ee eipentia OT “| and Hatt, es ee ee CNC RR Uv teTAE Cére Ss Disapility I Ee CDE IEY ppp Aged Core AGATE guerre —__ XX Services 0% 20% 40% 60% 80% 100% 0% 20% 40% 60% 80% 100% MYes MHNo WMYes MNo

— ACIA 4

Page 5

ACIS 4.0 meets contemporary and evidenced based needs across aged care, community care and disability. ACIS is split into 5 core areas which are proportionality reviewed against the providers

scope and service provision. These Core areas are:

• Rights & responsibilities

• Corporate Governance

• Clinical Governance

• Service Delivery

• Service Environment

Then additional modules are included in the three-year certification and annual surveillance reviews, where the provide undertakes these areas. These include:

• Complex Physical Supports Medication Management Wound Management Catheter Management Complex Bowel Management Enteral Feeding and Management Ventilator Care and Management Subcutaneous Injections Brain and Spinal Injury management Palliative Care and Pain Management Diabetic Management Bariatric Management .Oncology Management .n. Altered Nutrition and Dysphagia
• Complex Behavioural Support a. Positive Behavioural Support

b. Complex Cognitive Impairment Support

• Mental Health Support
• Assistive Technology Advanced Airway and Suctioning Management

Following a comprehensive mapping activity, ACIS 4.0 shows alignment to 50% of NDIS and another 50% to Aged Care Act as indicated in Figure 2.

Figure 2: Mapping of ACIS to NDIS and Aged Care Act

ACIS 4.0	NDIS Standards	Aged Care Standards
Rights & Responsibilities	@	@
Corporate Governance	@	@
Clinical Governance	@	New standard
Service Delivery	@	@
Service Environment	@	Inc new requirements
Add. Physical Support
Add. Behav. Support
Add. Mental Health
Add. Assistive Technology
TEAM: RN +1
DURATION: 1yr*
© Increased scope
© New cognitive imp. std
@ New standard
@ New standard
2 (non RN*)
1.5 years
@ Similar standard @ Largely Similar
— ACIA 5
o Increased human rights
o © Increased governance
o © Increased scope $S$
@ New standard
@ New standard
2 (non RN)
3 years
& New Standard

The biggest issues currently impacting on providers

as per Figure 3 is workforce (456 responses).

Figure 3: Biggest issues effecting the sector

What is the number one issue in aged care,

disability and community care today?

You can see how people vote. Learn more

• Lack of workforce 50%
• Inadequate Funding 33%
• Workload 12%
• COVID 5%

We further asked our members if we are adequately supporting the people in our community with disabilities (289 responses), and the response was 95% NO as indicated in figure 4.

Figure 4: Are adequately supporting the people in our community with disabilities?

Are we adequately supporting the people in our

community with disabilties

You can see how people vote. Learn more

• Yes 5%
• No @ 95%

—ACIA 6

Who best supports participants with disabilities

ACIA asked members about who best supports the needs of our participants with disabilities best in the community and it is clear that there is a gap in how effective NDIS and Aged Care Commission is in supporting these needs with 83% saying family and carers (132 responses) (Figure 5).

Figure 5: Who is the best at looking after the frail, vulnerable and disadvantaged in our community?

A challenge… who is the BEST at looking after the frail, vulnerable and disadvantaged in our community? Is funding correctly done?

You can see how people vote, Learn more

• Federal Government 7%
• State Government - Which one? 8%
• Local Government - Which one? 1%
• Families and Carers 83%

Further to this a question of our members was what was the biggest risk to a person with a disability (Figure 6)? With 52% of the 194 responses being that there is a lack of NDIS funding to support the needs of this population.

Figure 6: What was the biggest risk to a person with a disability?

What are the biggest risk to persons with a disability?

You can see how people vote. Learn more

• Staff skill and capability 30%
• Supervision of Staff 4%
• Management of the NDIS Scheme 14%
• Lack of funding to meet needs 52%

Thank you for the opportunity to consider our response to the Joint Standing Committee on the NDIS

to consider General Issues around the implementation and performance of the NDIS. ACIA absolutely supports and recognises the importance and value of the NDIS to support people with disabilities to have choice and control, greater independence and improved quality of life in order to support a meaningful and enriching engagement in the community.

Summary of Recommendations

Australian Community Industry Alliance recommends the following:

• NDIS standards should be dramatically reviewed to greater safeguard against the needs of their vulnerable participants by aligning NDIS standards to ACIS 4.0;

• NDIS and NDIA governance and leadership lacks transparency, contemporary data and strategy to adequately support this population and sector:

• The findings of various committees and hearings have not been considered, heard not actioned and this suggests negligence from an advocacy and representation position.

— ACIA 8

Response to Joint Standing Committee Reports

In response to the recommendations of both the (Commonwealth of Australia, 2020a, 2021b) Joint Standing Committee on the National Disability Insurance Scheme General Issue reports:

— ACIA

3.83 —

There has been no action from the NDIS to consider plan management response and adequate emergency management funding for participants to adequately support their needs during this pandemic and other emergency disaster situations that have occurred, aside from changing the standard. Support requires emergency funding and increased supports including faster response times to ensure that participants aren’t left further isolated and vulnerable.

• There is a significant lack of advocacy for people with disabilities; -II. ACIA should be considered as a lead advocacy support organisation for people with disabilities: -Greater accountability and transparency is needed in the management of cases and appeals; -Response times, appeals timeframes and process management should be defined as KPIs for senior management in both the NDIS and NDIA: -A review of the NDIS standards is needed to align it with ACIS in order to ensure providers are adequately scoped and capable of managing the complexity and needs of clients; -Plans need to be individualised and focused on the goals of the participants as opposed to financial targets: -Similar to the Aged Care sector there needs to be a system where navigators are used to support participants navigate the process; -VIL. A review of the skill set and experience of planners is necessary;

-IX. A review of communication strategies with participants is necessary: -a 2 & e& <

5.26 —

We would recommend that mental health, as is represented in the Australian Community Industry Standard, has a registration group or standards ensuring that staff are adequately trained and supported to identify mental health including suicidal ideation and carer strain early so that supports can be accessed and escalated for further assessment. Further to this, Providers should be undertaking assessments in relation to mental health needs in addition to their physical needs. Finally, we are concerned that there is not adequate reviews of APHRA registered health professionals aside from validation of current registration to validate adequate processes and safeguards in place to support the needs of people with disabilities. This includes psychologists, physiotherapists and Registered Nurses.

5.64 —

Whilst we acknowledge that the NDIS has developed a strategy around cultural safety, it has not achieved the recommendation for updating standards and the provision of training and community awareness in this area.

5.126 and 5.127 —

It would seem that there has been a lack of focus and attention to the needs of homelessness issues for people with disabilities. This is an area that remains increasingly concerning in the community, both temporary and permanent homelessness for a wide variety of reasons.

6.96 —

Members feedback would suggest that whilst there is published information on the need for someone to contact the NDIS when there is a death, there lacks information on the ability and funding of a provider to support the family during this period. Furthermore, there needs to be a documented process of root cause analysis in this process to determine the issue at hand leading to the deceased condition. There is a lack of information from the NDIS commission looking incidents or complaints that lead to an adverse outcome to support learnings from a near miss or hazard point of view.

Further to recommendation 34 in the General issues report we consider the AAT processes, timelines, and overall management a complete failure. It continues to demonstrate a lack of timely information, lack of advocacy, inconsistencies in findings and at a cost both in time

and money for both NDIS and participants that is incongruent with the intent of the NDIS and the Act to which it is founded against. We implore the committee to pursue some reasonable and timely responses to the actions or ill actions of the AAT. Support needs to be funded for participants to access advocacy assistance when undertaking or considering appeals processes due to the stress and challenges that this process delivers. ACIA supports greater transparency around KPIs for AAT.

I. Additional support is needed given the distress that is endured during these processes, without due regard for the challenges and life changing needs that occurring despite the legislative barriers that are imposed.

IL. A 21% of appeals suggest a mismanagement of issues and poor management Til. An 18 week average resolution is not conducive to the needs of the community of reflective of the intent of the process.

e ACIA supports the recommendation that the Joimt Standing Committee on the National Disability Insurance Scheme of the 47th Parliament of Australia reinitiate this committee’s inquiry into Current Scheme Implementation and Forecasting for the National Disability Insurance Scheme and continue to consider evidence received by the committee in the 46th Parliament.

ACIA would like to further be considered as a part of the NDIS Independent Advisory Council, both as advocate but also given the complexity of care undertaken by our members and experience at managing a scheme that cross across aged care, disability and community care, we bring governance and sector expertise.

Australian Community Industry Standard (ACIS) has been in place and effective in ensuring compliance and high quality of care and service provision across disability, community care, insurance and aged care for 16 years. ACIS should be considered as the model of credentialing for NDIS and non NDIS services. ACIS should be considered for the Linkages and capacity building grant to move to regulatory alignment and future compliance management to ensure adequate safeguarding of clients care and service provision.

Interfaces between NDIS and Non NDIS services are essential to support; reduced administrative burden, improve transition between and within programs, support learnings and trends across sectors, and increase communication and engagement nationally. This should include areas such as code of conduct, complaints, certification and quality management, approved provider management, qualifications and competence,

Funding of NDIS should be considered in alignment with a user pay and means testing approach, in line with the previous means testing aged care undertook rather than including assets. There is a significant need for reserve pool funding and an ability to prioritise and distribute based on assessed need. Assessments should be almost based on case mix approaches as a starting point and then reviewed up from there in line with specific goals and individual milieu.

Financial modelling as aligned to insurance modelling as indicated in recent years reviews of iCare insurance reviews have demonstrated significant flaws in these processes. One of the major flaw in the NDIS system is that not all staff and providers supporting NDIS participants need to be registered in NDIS as approved providers and along with self management, participants become largely unsupported and more vulnerable. In iCare and MAIB (other states are moving towards this), all providers must be ACIS accredited to ensure they are meeting the needs of client as aligned to their scope of services. This has been enforced by the recent parliamentary review of iare that ACIS must stay in place as a safeguarding of clients needs.

Governments Position and LACK of accountability on Disability

It is important to first acknowledge that the intent of the NDIS is as defined in its operational guidelines:

— ACIA 10

The National Disability Insurance Scheme

Overview

The NDIS is a new way of providing individualised support for people with disability, their families and carers. The NDIS will provide all Australians with a permanent and significant disability, aged under 65, with the reasonable and necessary supports they need to live an ordinary life.

Eligible people, known as participants, are given a plan of supports which is developed and tailored to their individual needs. A plan could include informal supports that a person receives through family, friends, mainstream or other community services. If required, the NDIS will also fund reasonable and necessary supports that help participants achieve their goals. Not all people with disability will become NDIS participants. Only those who meet the access criteria will become a participant and receive an individualised plan. However, the NDIS can provide people with disability, their families and carers support through information, linkages and capacity building by connecting people to the mainstream community. (NDIS, 2019).

Are we achieving this? NO

providing individualised support for people with disability, their families and carers. with the reasonable and necessary supports they need to live an ordinary life. given a plan of supports which is developed and tailored to their individual needs fund reasonable and necessary supports that help participants achieve their goals NDIS can provide people with disability, their families and carers support through information, linkages and capacity building by connecting people to the mainstream community

x * *® *® *

The Productivity Commission Report (2011b) found that the disability system was underfunded, inconsistent, fragmented and inefficient and gave people with disability, their families and carers little choice and no certainty of access to appropriate supports

Are we achieving this? NO

Funding appropriately

Funding and managing a system fairly Providing a streamlined and efficient service Providing increased choice Ensuring certainty of access to appropriate supports

x * *® *® *

The National Disability Strategy (201 1a) sort to improve the accessibility of mainstream services for people with disability will complement specialist disability services and programmes currently provided by Commonwealth, state and territory governments, including those provided through the NDIS.

Are we achieving this? NO

x Reducing barriers in the community to stop people with a disability actively participating in the community Creating better linkages with community for people with disabilities Implementing strategies to ensure people with disabilities can engage in more activities Ensuring the community understand and implement fair rights for people with disabilities All people with disabilities are treated fairly Helping them understand the laws, including ALL of the NDIS rules and regulations Ensuring they have access to money Ensuring they have access to good housing Ensuring they can access a good job Ensuring people with disabilities have more choices Ensuring people with disabilities have more control over their lives Helping people with disabilities be more independent Government offering more information, choice and control

x *® *® ® K® ® KK KX KK XK

The inquiry into NDIS Planning (Tune, 2019) recommended 42 recommendations of long standing issues that remain yet to be addressed:

— ACIA ll

Are we achieving this?

NO

x Major inconsistencies in plan funding between participants with the same disability type:

x Plans not including funding for particular supports for the reason that a participant already has informal supports, despite the participant stating that they have no informal supports;

x Plans not including funding for particular supports for the reason that these should be available in another service system, such as health, without the NDIA first checking to determine whether the supports are indeed available and the participant is eligible for them:

x Planner errors, including listing the wrong disability type on participant plans:

x The experience, expertise and qualifications of planners:

x Planners ignoring or changing expert recommendations from allied health professionals about the supports appropriate for a particular participant;

x The planning process for particular cohorts, including participants with psychosocial disability, Aboriginal and Torres Strait Islander people with disability, children and young people, and participants in custodial settings:

x Issues with external appeals to the Administrative Appeals Tribunal (AAT), and allegations that the NDIA was not offering participants new plans in the form that the AAT had ordered following an appeal; and

x Problems with communication from and by the NDIA, including slow or non-existing responses to queries, and participants not being invited to their own planning meetings.

The Joint standing committee on NDIS produced a report on NDIS Workforce (Australian Government, 2021b), yet none of these recommendations have been implemented.

Are we achieving this? NO

x Increasing NDIS workforce data collection

• Consulting NDIS workers and other key stakeholders in all NDIS pricing review processes

x Improving employment opportunities for people with disability and Aboriginal and Torres Strait Islander people within the workforce

x Addressing the funding and resourcing implications of new training and upskilling initiatives

Increasing student placement opportunities within the workforce

• Developing clear and measurable outcomes for the initiatives in the NDIS National Workforce Plan 2021-2025: and

x Developing a comprehensive consultation strategy for the implementation of measures under the Workforce Plan.

ACIA acknowledges the Major changes that the NDIS has implemented since December 2020 as outlined in the General Issues Paper (Australian Government, 2021a). However, it is remise in the needs of participants and alignment to the goals and directions as set out by the NDIS Act.

Are we achieving this? NO

Alignment of plans to individual goals: Active engagement in the community: Appropriate funding: Flexible funding to support the needs of the participant and their carers: Quality assurance processes and transparency in the NDIS and NDIA systems; Lack of choice and control of participants;

x *® *® *® *K *

— ACIA 12

— ACIA

Co-design and adequate consultation with participants and key stakeholders in practices and system improvements;

Lack of legislation that ensures providers are adequately safeguarding the needs of participants to meet current needs:

Lack of advocacy and support to translate the complexities of the NDIS system:

NDIA lacks consultation and engagement as evidenced in this report:

Active outputs to support homelessness

13

Access and Plan Management

ACIA remains concerned about a few things in relation to access and plan management, these include:

• Our members are reporting that plans are being reduced up to 60% on each review, with an average reduction on plans around 18%. This is significantly impacting on the ability of Providers to deliver against the participants goals. Plans are being reduced despite expert advice from health professionals and those of the direct needs and wishes of participants. How can an expert in the field who deems that the person cannot be safely transferred without the use of a hoist be refused the purchase or hire of an appropriate hoist and told to make do, forcing staff to work in unsafe environments, risk injuring the participant and having catastrophic outcomes, all of which was recommended by an expert? There are constant examples of were experts in the field are not supported to reflect the needs of a participant with no reasonable response or justification, aside from an administrative position of cost saving.

• Examples of issues are evident where behaviour practitioners are now involved, and whilst the information is both relevant and comprehensive as per our member feedback, often the plans are not undertaken in consultation with the participant and families. Additionally, the strategies documented are only for the providers staff and due to often many restrictive practices occurring in participants homes by their carers, staff are unable to implement these under the express direction of family. Furthermore, the interventions are more frequently now as plans are being reduced unable to successfully support transitioning from the restrictive practice to an alternative solution, therefore impeding quality of life.

• We remain concerned about the level of experience and capability of support coordinators and plan managers. We recommend that those roles need to be assessed within the standards framework as a registration group for support coordination. This is a critical role and one that remains the core link between the NDIS and the participant. This further a risk that is over servicing is undertaken within these roles, including over funding which should be considered within the audit and review process. This is further reiterated in the Inquiry into NDIS Planning — Final report and noted in the General issues paper in 3.11.

• We note that 2.3 of the report notes that personalised budgets in the proposed form wouldn’t progress. We would suggest that there is very little individualised budget planning occurring after the commission has cut plan budgets despite evidence from health professionals. It would appear from member feedback that success in plan management approval comes down to the ability of a plan manager to write to the NDIS assessors requirements rather than speak for the needs of the participant in order to be successful.

• In 2.3 we further note that the NDIS Fraud taskforce is looking at compliance with providers and participants, however it carefully needs to review self managed plans as we have a direct example of where carers of a person with disabilities pays another family carer $110,000 annually to provide supports for their family member who doesn’t provide the services at all and the other family does this in reverse. They are simply paying themselves to provide the care.

• As raised in 2.9, the administrative burdens are extensive. We are now seeing numerous and high risk examples where participants fail to disclose information due to the providers responsibility to assess, report and intervene. This is concerning behaviour that is not doing what the commission sought to undertake in its intent in order to safeguard participants.

• ACIA supports early intervention strategies as is well evidenced in research as reducing the total disability and comorbidity resource requirements in the longer term. Ongoing measures in alignment with ACIS direction should consider the needs and initiatives including:

  • Standards around assistive technology
  • Home modification guidelines and measures for consistent implementation
  • Requirements of all supporting providers and non providers supporting participants

Mental Health Support for Carers and Participants

Increased Accessibility for Respite Services

Review of SIL Environments

To ensure these are adequately funded and managed against best practice approaches.

Plans should have additional and flexible monies allocated in the circumstances that allow for urgent changes and unexpected needs.

NDIS standards should be modelled to ACIS.

Clinical governance needs to be added as a matter of priority to NDIS requirements of providers;

NDIS auditors need regular training and development to support consistent auditing and reporting.

The NDIS needs to improve its governance and leadership approaches to ensure that changes are planned and well communicated in alignment with the intention of the NDIS.

XII. Complex Care Needs of Participants Need to Be Better Addressed by the Modules To ensure adequate provisions are in place to safeguard these needs including bariatric, pain management, palliation, acquired brain injury and advanced airway management.

Za § 2

as Reasons for variations in NDIS plans include: e Availability and costs of services in rural and remote areas are substantially more expensive and where equitability is evident on paper, accessibility is far more prevalent: e Participants success for having plans assessed fairly and against the needs of the professionals and key stakeholders engaged in supporting the care of participants, is largely dependent on the skill and knowledge of the participants plan manager in order to be able to write the correct wording and navigate the NDIA processes more efficiently. Often only metropolitan participants have access to these experienced plan managers; e Appeals processes are costly, time consuming, stressful on top of dealing with complex conditions as a result of the disability, rarely are helpful advocates engaged and in majority of circumstances as evidenced by senate hearings recently these appeals are long in duration, costly and highly mismanaged: e Participants and their key stakeholders rarely have knowledge of all the rules and loop holes; e Plans are often limited by the total amount rather than starting with what are the goals and needs of the participant: e The reporting and insights available by the NDIS and NDIA are very limited to enable transparent benchmarking and easy accessibility of variations in plans often no until periodic audits are undertaken in hindsight: e Variations in plans occur often quicker than the deterioration and changes in care needs of participants which is often limited by geography and accessibility to health professionals and services. — ACIA 15

Registration

Whilst participants have rights, they inherently by choice of accessing these rights, also have responsibilities. This therefore becomes a mutual obligation. Participants under this choice and control currently are not self disclosing behaviours, medications and diagnosis including mental health issues which increases the risk for staff, and on the participants when an inadequate risk assessment in undertaken. Participants stating often that they don’t want all the additional reporting associated with this self disclosure.

Whilst the NDS has not seen this as a remit to further consider, unregulated providers should have at least a minimum check of worker screening, insurances, training, safeguarding, reporting and policies to ensure the adequate supports are in place to protect participants. Currently participants who are self managing or accessing un-registered providers are unsure and far from informed of all the checks they need to complete.

There should be a three tired certification process:

1. Verification for low risk, low engagement supports. Things that should be removed here include community nursing and medication management.

2. Low risk certification in its current form for low risk high engagement activities. Currently mid terms which are often being extended out to 2.5 years now instead of 18 months, only review governance and a smaller sampling.

3. High risk certification where providers are reviewed against all modules every 18 months to capture the high risk areas they are involved in which includes SIL, SDA, high intensity supports, behaviour management etc.

Self-Management

ACIA has received information from the NDIS that only 30% of NDIS funding in the second quarter of 2021-22 was attributed to self managed participants. Despite this our members feel that this is considerably larger. We remain concermed that simple verification processes to ensure that insurances, basic policies and worker screening checks are in place should be made mandatory for all persons providing care and services to NDIS recipients, self managed or otherwise. This is to ensure adequate safeguarding is in place, including ensuring that clients funds are managed safely and without fraud in place.

Standards

We would like to see the committee consider the current Australian Community Industry Standard (ACIS) as an exemplar in the care and service provision of people with disabilities along with those who are frail and elderly. It goes above the NDS standards and identifies the gaps in the NDIs standards around governance, clinical governance, complex physical care, cognitive impairment, person centred approaches, mental health and assistive technology. The standards lack contemporary evidenced based approaches as evidenced in ACIS where clinical governance should be a core and proportionally assessed module for providers providing care, which then enables registration groups of community nursing, medication management and other high intensity supports considered as an additional element. Currently medication management is considered under verification and if we consider that psychotropic medication usage is estimated to be as high as 70% in the cohort of persons with a disability and polypharmacy where nine or more medications are in place, could be as high as 65%, this is a significantly concerning area that needs higher supervision and monitoring. Furthermore, examples of cytotoxic (oncology) medications are being administered by support workers with no understanding of the issues around waste management, management of spills and issues of staff safety and health that is required.

Whilst the death of the participant in South Australia was a tragedy, it is concerning that the NDIS is considering a narrow and insular approach around ensuring all personal care is undertaken by two staff to reduce this risk. This is far from the root cause analysis of this problem. There are many

NDIS Sector Issues

Areas of Service Provision

areas of service provision that should be included in this area, including SIL accommodation, high intensity supports, therapy, community nursing and day therapy programs. The issue is fundamentally based on improving the governance and workforce capability / supervision that occurs including regular assessments and reviews.

NDIS standards and scheme requirements are largely flawed. They are not contemporary, risk based and nor do they adequately cover the governance and clinical governance needs of the sector. I would strongly encourage you to consider reviewing ACIS 4.0. ACIA provides transparency of all reports, engaged in supervision and education of auditors to ensure contemporary and relevant knowledge of scheme requirements and standards, as well and supporting providers through their weaknesses. It is almost impossible to get a direct answer out of the Commission, there is rarely positions that they have shown leadership on with good planning, data that is evidenced based and root cause focused to inform strategic approaches in management. There is a largely autocratic approach to NDIS management rather than co-design or engagement based approaches with decisions made and consultation follows to ensure due process. I would encourage a more proactive approach with the learnings of ACIA to how to provide standards across multiple sectors, work with providers and auditors through transformation and develop against trends and client acuity patterns. As an example: complaints in NDIS are largely not risk managed, don’t facilitate engagement with providers and participants, rarely provide direction and there is little to no analysis of trends and themes to inform improvements and strategy.

Workforce

Workforce issues as presented in earlier information presented remains a core issue for the NDIS sector, both the workforce capability and shortage. Current strategies, along with the untimely and unprecedented pandemic has left the current workforce fatigued and withered in numbers. There must be a focused and supported strategy to consider supports in this area as it cant be left to providers only. The SCHADs award changes are further going to reduce the capacity of providers to provide the choice and control that participants want along with having any ability to provide a viable business. This must be considered a priority.

COVID Management

Whilst we acknowledge the additional supports for COVID vaccinations for people with disabilities, there has been considerable issues around choice and control for people with disabilities in relation to COVID testing and compliance. As it was a directive for people working with people with disabilities to have their vaccinations, this was not implemented across self managed participants who chose unregistered providers. Furthermore, on a daily basis providers were struggling with participants who refused to get tested for COVID despite having symptoms and staff getting vaccinated. Providers tried to risk mange the situation as best as possible however as participants exercised their choice and control in these cases it was impossible to manage them in most cases, with them refusing to wear masks, refusing to let staff enter their houses with PPE and other similar situations. This provided positions were even at the beginning of the year there were periods that organisations have 40-50% of shifts being unable to be filled.

Dignity of Risk

Dignity of risk supports the rights of clients “to make their own decisions about their care and services, as well as the right to take risks (Commonwealth of Australia, 2021a, p. 8)”. It is further defined by Ibrahim and Davis (2013, p. 1) as the “principle of allowing an individual the dignity afforded by risk-taking, with subsequent enhancement of personal growth and quality of life”. Dignity of risk presents one of the most challenging and evolving areas in aged care and disability provision due to the express nature of the legislation to enable and support the concept, however with growing demands on duty of care, ensuring the safety of others and governance requirements, it only but provides a blurry and indeed challenging space for those in the sector to unpack. Despite this evolution, this right for self-determination is inherently in the right of all individuals. It is undertaken throughout the course of ones life, so one may further consider what right does a provider or decision maker have to influence, restrict, or impede an individual’s choices of an individual regardless of their physical, cognitive or other impairment.

Dignity of risk, was first introduced into the literature in 1972, by Robert Perske, where it developed an initial narrative on the complexities of the subject, particularly in relation to persons with a disability (Perske, 1972). He outlined that some of our greatest accomplishments came with risks, despite often failing on numerous occasions to achieve these outcomes. Even early into the journey of dignity of risk, Dr Julian Wolpert argued that without the ability of a person to take risk, she hypothesised that there was no dignity (Wolpert, 1980). As well put by Rhonda Nay; “Life itself is a risk. We cannot eliminate risk without eliminating the person” (Nay, 2002).

For anyone who has worked with vulnerable clients, including the elderly and persons with a disability, there are frequently periods where restraint has been considered the only option compared to the risk of injuring themselves or others. This may be due to cognitive decline, limited memory, or poor reasoning capacity (Hofmann & Hahn, 2014). However, what is clear from the literature is restraint can have elongated and detrimental side effects that can impede ongoing functioning and can impact cognition (Cotter, 2005). Mechanical restraint in one study was reported to be used in 13% of clients predominantly used to control aggressive behaviour (29%), prevention of falls (19%), and general protection (19%) (Capeletto et al., 2021). Physical restraints can result in death from asphyxiation or strangulation (Miles, 2002: Parker & Miles, 1997). They are additionally highly likely to result in acute functional decline, pressure ulcers, incontinence, and an exacerbation of behaviours (Hofmann & Hahn, 2014; Koczy et al., 2011). Chieze et al. (2019) reported results following a systematic review that included; increased agitation, feelings of being punished, loneliness, and helplessness, as well as potentially some reported cases of Post Traumatic Stress Disorder. Strategies to reduce the utlisation of restraints invovled increased education and knowledge base for staff (Brugnolli et al., 2020; Koczy et al., 2011), assistive surveillance technology (Te Boekhorst et al., 2013), engagement of specialists (Cotter, 2005), review of medications, increased supervision (Brugnolli et al., 2020) and development of therapeutic relationships (Chieze et al., 2019). Further insights into creating safe environments for clients to exercise dignity of risk remain a journey for the health sector.

An overall improved quality of life foundationally supports the position for the advantages in risk-taking. There are values to be had in enriching a person’s independence and overall autonomy, as well as improvements in social engagement and interaction, general wellbeing improvements, and health status. Dignity of risk is supported to enrich a persons general self determination and feelings of worth, along with the construct of value added role in society. As presented earlier, life brings with it risk and is largely unpredictable, and this approach intends to facilitate a medium between duty of care and risk. The situational paradigm surrounding the risk may include considering; cognitive ability, the safety considerations, stage of life, the values of the individual, the individual capacity, the experience of the provider and staff engaged with the decision, substitute decision-makers and key stakeholder feedback, legislation requirements and guidance, what is fair and reasonable and the level of supervision required. However, the decision of risk comes largely with the preception and decision associated with choice.

It is highly regarded that clients need choice. This negotiation with clients and key stakeholders in order to improve clients independence and autonomy, involves engaging the person and providing informed consent. Whilst choice is often about giving a voice to the needs and wants of a client, it additionally acknowledges the rights and outcome of the decisions may come with mistakes and

Dignity Of Risk

learnings. Engaging conversations about choice requires informed discussion and documented acknowledgment of the levels of risk one is prepared to participate. Ultimately, this supports an increased person centred approach of care and service provision. It furthermore, engages in a value add approach to the needs and values of a person relevant to the stage of life they are experiencing.

Dignity of risk does not remain theoretical anymore, rather it is strongly embedded now in a number of key legislative documents and guidelines. One of the key areas in duty of care are ensuring providers have well documented and clear processes for clients choosing to take risks, either in their daily care and service provision or more specific activities that they wish to engage with. By ensuring that there is informed consent, reasonable safeguards in place and supervision where able, risks can be minimised to optimise the outcome of both the client and the provider. Within the Aged Care Act (“Aged Care Act,” 1997), standard 3(c) states that “each consumer is supported to exercise choice and independence”, further described in (i) “to make decisions about their own care and the way care and services are delivered”. The Standards Guidelines elaborate on this to say that each person “as much as possible that decisions are made by the consumers themselves” (Commonwealth of Australia, 2021a, p. 18). It voices the acknowledgement that clients are recognised and indeed respect.as an expert in their own care, lifestyle, choices and experiences. While such policy sets out a clear agenda for clients residing in aged care facilities and the community, it does little to assist providers manage the daily risk issues that are present. The Aged Care Quality and Safety Commission has not supported the sector to raise awareness of dignity of risk issues, rather left this in the hands of the provider to navigate. Whilst common law provides support legally, the negotiation on risks to mitigate falls, minimise episodes of aspiration, support the wishes of clients to smoke despite non adherence to risk assessments and in the interests of naming a few, wander the streets at the risk of getting lost or injured. This policy directive goes a long way to supporting the choices or clients, however the sector is concurrently micromanaged by its reporting on restraints, falls, wounds and utilsiation of psychotropic medications.

In 2008, the United Nations Convention on the Rights of Persons with Disabilities, Article 19, acknowledged the right of the individual to make choices about their life. The National Disability Insurance Scheme (NDIS) (“NDIS Act,” 2013) acknowledged dignity of risk as a critical part of a person with a disability’s right to choice and control. It states that a person with a disability “should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports (“NDIS Act,” 2013, p. 6)“. It ensures that the participants’ support plan must include any unreasonable risks (Section 44 (2)a), furthermore acknowledging the responsibility of the CEO to manage such risks. The NDIS Commission as a part of their Quality Standards, verifies through the certification processes that “each participant’s right to dignity of risk in decision making is supported… to make informed choices about… the risks and the options under consideration (Commonwealth of Australia, 2020b, p. 6)”). However, yet again there is a long way to go to supporting the sector to support participants where restraint is demanded by family for safety, or where a person in a group home needs to be restricted from leaving the house for their safety, or the manual handling practice requests of the family are inconsistent with provider expectations, medication administration is provided in a unique manner for the needs of the child with disability, or the cost of adequate supervision of a participant is not covered by the NDIS.

The concept of duty of care invariably is linked to dignity of risk. The overall intent of duty of care is making all reasonable and foreseeable efforts to ensure the client does not come to harm. However, there has been reasonable principles within common law that give a person the right to self-autonomy and an innate right to determine how they shall live. It provides precedence for the client to make reasonable and informed risks to the choices that may impact on their life. As set out in the aged care standards, providers need to ensure a balanced approach to managing risks and respecting the rights of the client (Commonwealth of Australia, 2021a). The Disability Services Act (2006) Queensland Section 19 (3) acknowledges that persons with disabilities “have the same rights as others.” In its disability framework, it responds to this issue by stating that providers have ensured dignity of risk is considered (Queensland Government). However, it has a long way to go on support this concept of dignity of risk, as do is in the other states, including; Disability Act (2006) Victoria, Disability Inclusion Act (2018) South Australia, Disability Services Act (2011) Tasmania, Disability Services Act (1993) Western Australia, and Disability Services Act (1993) Northern Territory.

Dignity of risk, whilst explicit in its intent and meaning, challenges both the sector and the community at large. A review of dignity of risk provides context to the challenges existing in this

Reasonable Risks Concepts

domain. The primary challenge is that whilst there is common law precedence for clients taking risk, this isn’t as well presented in relevant legisation. There is no doubt in the policy direction that dignity of risk is critical to support the choice and control of clients, as with the inevitable journey of life there comes risk, and without risk taking there is no dignity.

Reasonable Risks Concepts

In acknowledgement of a devastating outcome for one participant noting the influence and power behind these recommendations. In comparison across NDIS, aged care and community care predominantly there is only one worker in a setting, even in residential care, at one time. And the review of vulnerability often comes out of an adverse incident or following a duration of period were development and therapeutic relationship occurs. Infrequently would a single assessment or ongoing reviews, and often these can be undertaken via telehealth options or phone and it would be difficult to establish the parameters of a truly vulnerable person. This may include: domestic violence, neglect that is not transparent, restraint (family initiated or worker required), physical deterioration with unreasonable medical review due to the disability, frailty or complexity of the disability including behaviours.

Reasonably, personal care is only one aspect of where vulnerability is an exposed risk. There is possibly more exposure in clinical care where technical equipment is available and can be used against a worker, or preparation of meals where knives are accessible, or social support where they are in settings that may be unsupervised and lack phone coverage despite the risk assessment. Where this concept is implemented and given that our members indicate that in January alone 30-40% of shifts were unfilled due to staff vacancies; how would this play out in delivery of personal care which is an essential element of care provision and a second worker isn’t able to be found or doesn’t turn up, than the vulnerable person is left more exposed. Many of our members have provided direct examples of where having two staff has not eliminated the risks, especially related to grooming type behaviours and neglect.

The NDIS is proposing to impose a requirement that they only have 30 days to impose this requirements, and agreements need to be adjusted to support changes, rosters need to be developed, staff need to be recruited and trained, would they need to be of a certain level of qualification given the issues qualifications concurrently, and given the SCHADS award changes there are further limits on broken shifts which is reducing the choices and rights of participants. Given the dignity of risk example, could a participant refuse to have two people? What if two people can’t safely and practically move within a bathroom or a room to support their manual handling needs and the safety of the participant?

Supported Independent Living

Supported Independent Living (SIL) accommodation offers considerable risks to participants where there is only one worker, often shared due to funding limitations between multiple participants and / or houses. These are often highly vulnerable workers due to the bespoke needs of the clients whilst being under the supervision of only one worker at a time, however again funding limits this option. Many SIL operators will monopolise the day and evening supports without giving other options and choices available due to cost minimisation.

Further to SIL accommodation the SIL participant usually pays 0-80% of their pensions to the Service Provider to run the house however there is no choice or control, nor transparency and accountability to how these funds are spent, let alone validation that it is meeting the needs and choices of these participants.

SIL accommodation should be considered for those under 18 years of age in bespoke settings rather than combining children and adults. Often families are unable to support the needs of children safely in a home environment safely and the participants are highly vulnerable in these environments. This often leaves the families only option to relinquish care to family services in order to support the needs of these participants with is completely against the vision and aim of NDIS and the legislation surrounding it.

Operational Risks

SIL accommodation should be considered for funding to support two workers being present, as it crosses through a variety of core support areas and risks for aggression, restraint and injury are considerably higher.

Frontline leadership and supervision of workers are currently challenging the integrity of the standards. There are not enough support workers, these are gaps are not only due to COVID. The Standards should consider greater focus on frontline leadership as was supported in the NDIS frontline leadership initiative. There are purely not enough support workers available and credentialed / qualified to meet the needs of all participants.

NDIS should fund case management and / or case workers for vulnerable people where by they are funded to risk assess the issues at hand, guide a bespoke approach to risk and work closely to validate issues, work through communication with key stakeholders and put in place processes to safeguard these vulnerable participants and then monitor them.

NDIS plans for participants in vulnerable communities including flooding and fires (but also extended for pandemics) should include adequate provisions for emergency funding and resources to support these participants.

NDIS and NDIA are currently focused on participants, however the intent of the legislation was also around their carers and families alongside supporting their communities. ACIA lacks any awareness of how this is being progressed.

References

Aged Care Act., (1997).

Australian Government. (201 1a). 2010-2020 National Disability Strategy. Canberra Retrieved from https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-disability-strategy-2010-2020

Australian Government. (2011b). Disability Care and Support. Canberra Retrieved from https://www.pce.gov.au/inquiries/completed/disability-support/report

Australian Government. (2021a). General Issues 2021. Canberra Retrieved from https://parlinfo.aph.gov.au/parlInfo/download/committees/reportjnt/024620/toc pdf/Generallsues2021.pdf:fileType=application%2Fpdf

Australian Government. (2021b). NDIS Workforce Final Report. Canberra Retrieved from https://parlinfo.aph.gov.au/parlInfo/download/committees/reportjnt/024621/toc pdf/NDISWorkforceFinalReport.pdf-fileType=application%:2Fpdf

Brugnolli, A., Canzan, F., Mortari, L., Saiani, L., Ambrosi, E., & Debiasi, M. (2020). The Effectiveness of Educational Training or Multicomponent Programs to Prevent the Use of Physical Restraints in Nursing Home Settings: A Systematic Review and Meta-Analysis of Experimental Studies. Int J Environ Res Public Health, 17(18). https://doi.org/10.3390/ijerph17186738

Capeletto, C., Santana, R. F., Souza, L., Cassiano, K. M., Carvalho, A. C. S., & Barros, P. F. A. (2021). Physical restraint in elderly in home care: a cross-sectional study. Rev Gaucha Enferm, 42, €20190410. https://doi.org/10.1590/1983-1447.2021.20190410

Chieze, M., Hurst, S., Kaiser, S., & Sentissi, O. (2019). Effects of Seclusion and Restraint in Adult Psychiatry: A Systematic Review. Front Psychiatry, 10, 491. https://doi.org/10.3389/fpsyt.2019.00491

Commonwealth of Australia. (2020a). Joint Standing Committee on the National Disability Insurance Scheme: General Issues. Canberra: Parliament House

Commonwealth of Australia. (2020b). NDIS Practice Standards: NDIS Practice Standards and Quality Indicators. (3). Canberra: NDIS Retrieved from https://www.ndiscomunission.gov.au/sites/default/files/documents/2019-12/ndis-practice-standards-and-quality-indicators.pdf

Commonwealth of Australia. (2021a). Guidance and Resources for Providers to support the Aged Care Quality Standards Sydney: ACQSC Retrieved from https://www.agedcarequality.gov.aw/sites/default/files/media/Guidance_%26 Resource V14.pdf

Commonwealth of Australia. (2021b). Joint Standing Committee on the National Disability Insurance Scheme: General Issues. Canberra: Parliament House

Cotter, V. T. (2005). Restraint free care in older adults with dementia. Keio J Med, 54(2), 80-84. https://doi.org/10.2302/kjm.54.80

Hofmann, H., & Hahn, S. (2014). Characteristics of nursing home residents and physical restraint: a systematic literature review. J Clin Nurs, 23(21-22), 3012-3024. https://doi.org/10.1111/jocn.12384

Ibrahim, J. E., & Davis, M. C. (2013). Impediments to applying the ’dignity of risk’ principle in residential aged care services. Australas J Ageing, 32(3), 188-193. https://doi.org/10.1111/ajag.12014

Koczy, P., Becker, C., Rapp, K., Klie, T., Beische, D., Buchele, G., Kleiner, A., Guerra, V., Rissmann, U., Kurrle, S., & Bredthauer, D. (2011). Effectiveness of a multifactorial intervention to reduce physical restraints in nursing home residents. J Am Geriatr Soc, 59(2), 333-339. https://doi.org/10.1111/j.1532-5415.2010.03278.x

Miles, S. H. (2002). Deaths between bedrails and air pressure mattresses. J Am Geriatr Soc, 50(6), 1124-1125. https://doi.org/10.1046/j.1532-5415.2002.50271.x

National Disability Insurance Scheme Act 2013, Commonwealth of Australia, (2013). https:/Awww.legislation.gov.au/Details/C2013A00020

Nay, R. (2002). The dignity of risk. Aust Nurs J, 9(9), 33. https://www.nebi.nim.nih.gov/pubmed/12017054

NDIS. (2019). Overview of the NDIS Operational Guideline - About the NDIS. NDIS. https://www.ndis.gov.au/about-us/operational-guidelines/overview-ndis-operational-guideline/overview-ndis-operational-guideline-about-

4.4.1 Objects of the NDIS Act™

The main supports other need to live an ordinary life.

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Perske, R. (1972). The dignity of risk and the mentally retarded. Ment Retard, 10(1), 24–27. h ttp s://www.ncbi.nlm.nih.gov/pubmed/5059995

Queensland Government. Your Life Your Choice. Brisbane: Department of Communities, Child Safety and Disability Services Retrieved from h tt ps://www.qld.gov.au/__data/assets/pdf_file/0029/58682/ylyc-self-directed-support- framework.pdf

Te Boekhorst, S., Depla, M. F., Francke, A. L., Twisk, J. W., Zwijsen, S. A., & Hertogh, C. M. (2013). Quality of life of nursing-home residents with dementia subject to surveillance technology versus physical restraints: an explorative study. Int J Geriatr Psychiatry, 28(4), 356–363. h ttps://doi.org/10.1002/2ps.3831

Tune, D. (2019). Review of the NDIS Scheme Act 2013 - Removing Red Tape and Implementing the NDIS Participant Service Guarantee Retrieved from ht tp s://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-act-review-final- accessibility-and-prepared-publishing] .pdf

Wolpert, J. (1980). The Dignity of Risk. Transactions of the Institute of British Geographers, 5(4), 391–401. h tt ps://www.jstor.org/stable/622018?origin=crossref