Submission 1 — Jesuit Social Services — National Disability Advocacy Framework 2022-2025 | External submission

Submission in response to the draft National Disability Advocacy Framework 2022-2025

June 2022

Contents

List of recommendations
Introduction
Jesuit Social Services: Who we are and what we do
Background: Challenges of the NDIS
Needs of participants
Flexibility challenges and limited responsiveness
Responding to the consultation questions
Jesuit Social Services’ vision of advocacy
Principles
Outcomes
Responsibilities, reform and policy directions
Identifying current and future disability need

We acknowledge the Traditional Custodians of all the lands on which Jesuit Social Services operates and pay respect to their Elders past and present. We express our gratitude for First Nations people’s love and care of people, community, land and all life.

For further information, please contact:

Julie Edwards, CEO, Jesuit Social Services

T: 03 9421 7600

E: julie.edwards@jss.org.au

List of recommendations

Recommendation 1: The Framework to extend its vison to cater for those with complex needs who may require tailored support to self-advocate.

Recommendation 2: The Framework principles to articulate the requirement for timely access to supports with appropriately skilled practitioners to assess for participant needs and deliver services.

Recommendation 3: The Framework principles to reflect a more equitable approach to justice with provisions for more accessible legal supports through the appeals process.

Recommendation 4: The Framework to include an outcome around guaranteeing greater coordination between the disability and mainstream services system.

Recommendation 5: The Framework to include an outcome around improved flexibility of the NDIS service system, in particular, funding to improve assessments and planning to ensure more timely access to packages and crucial support.

Recommendation 6: The Framework to have a greater focus on establishing a culturally responsive disability service system, including increased funding for community organisations that work with Aboriginal and Torres Strait Islander and CALD communities to support them to understand, apply for and participate in the NDIS.

Recommendation 7: The Framework to have a greater focus on building capacity for decision making, specifically by outlining a process by which the capacity of participants is assessed on an individual basis, given those with very complex needs may need more assistance and support in making informed decisions than others.

Recommendation 8: The Framework to include ‘Strengthening the capacity of community services sector for collective advocacy’, including a particular focus on people with complex needs.

Recommendation 9: The Framework must include outcomes for specific cohorts such as people with multiple and complex needs; women with disability in the justice system; children and young people with disability in the youth justice system and; people with acquired brain injuries in the justice system.

Recommendation 10: The Framework to include key actions, indicators and roles and responsibilities under each outcome.

Recommendation 11: The Framework to include the following as current and future issues advocacy issues for people with multiple and complex challenges:

Genuine commitment to improving the NDIS by reforming its price structure, improving its accessibility, and assessment and planning processes.
Enhancing access to safe, secure and stable housing for people with multiple and complex needs.
Recognising and responding to violence and abuse against people with a disability.
Improving availability of education and employment opportunities.

Introduction

Jesuit Social Services welcomes the opportunity to contribute to the development of the new National Disability Framework 2022-2025 (the Framework).1 We believe that every person living with a disability in Australia should have access to the opportunities in life that enable them to thrive – to access crucial disability supports, to have safe and affordable housing, to complete their education, to get a job and to live their life

1 Department of Social Services. (2022). Draft new National Disability Advocacy Framework 2022-25. Australian Government. (Weblink)

to its fullest potential. This submission draws on our experience engaging with people and communities experiencing disadvantage, focusing on the intersections of disability with complex needs, multiple forms of disadvantage and people involved in the justice system. We are particularly interested in providing input given we are a registered and accredited National Disability Insurance Scheme (NDIS) provider and support NDIS participants living with highly complex needs, their care teams and support networks to achieve their personal goals and build capacity.

Overall, Jesuit Social Services notes that the proposed Framework has promising elements, however, we are concerned that it may not meet the needs of people with a disability who have multiple and complex needs. Our submission responds to the consultation questions and makes recommendations to ensure the Framework is responsive to people with multiple and complex needs and guarantees the reforms necessary so they can thrive and live life to the fullest.

Jesuit Social Services is a social change organisation working to build a just society where all people can live to their full potential. For 45 years we have been working with some of the most disadvantaged and marginalised members of our communities, who often experience multiple and complex challenges. We work where the need is greatest and where we have the capacity, experience and skills to make the most difference. We deliver services across Victoria as well as in New South Wales and the Northern Territory.

Research, advocacy and policy are coordinated across all program and major interest areas of Jesuit Social Services. Our advocacy is grounded in the knowledge, expertise and experiences of program staff and participants, as well as academic research and evidence. We seek to influence policies, practices, legislation and budget investment to positively affect people’s lives and improve approaches to address long term social challenges. We do this by working collaboratively with governments, business and the community sector to build coalitions and alliances around key issues, and building strong relationships with key decision-makers and the community.

Our NDIS specific work

At Jesuit Social Services, we work with people who have complex needs, including mild-to-moderate intellectual or cognitive disabilities. Our participants often experience a range of co-occurring and interrelated issues including homelessness, mental illness, substance misuse, involvement with child protection and the justice systems, and experiences of trauma, including family violence. We also respond to specific populations including people with intellectual disabilities, people with an acquired brain injury (ABI), people in the youth and adult justice systems and vulnerable young people. In doing so, we offer disability supports, services and accommodation. Our disability-specific programs include:

Perry House – a Specialist Forensic Disability Accommodation service providing 24-hour support. Referrals can only be accepted from the Victorian Department of Families, Fairness and Housing state-wide referral program. To be eligible for our Perry House program, participants must have a diagnosed mild or moderate intellectual disability as well as involvement in the justice system. These young people have often also experienced grief, trauma and abuse causing developmental delays and inhibiting their development of emotional management or coping skills. As such, they require specialist support that is trauma-informed and can assist them to work on these and other skills.
Support Coordination we are now doing Specialist and generalist Support Coordination working actively with NDIS participants, their care teams, service providers, and support networks to achieve their personal goals, support them to understand and navigate the NDIS, increase their independence, and reduce barriers to accessing supports. Many of the people we support have complex needs and are

working with other service providers, including Child Protection, mental health, justice and youth services. As a result of this involvement, our Support Coordination program also works closely with these mainstream systems.

Background: Challenges of the NDIS

Needs of participants

Jesuit Social Services has first-hand experience of the challenges of the NDIS service system in meeting the requirements of people with complex needs. The NDIS fails to service people who might not neatly meet its eligibility criteria and have intersecting, complex needs such as mental health concerns, intellectual disabilities, ABIs, experiences of trauma, out-of-home-care, justice involvement or grief and loss. The participants we work with are eligible to receive a combination of federal and state government financial support packages. However, due to the complexities of these service systems, they often require long-term assistance to navigate them and to access the support they need. Delays in support and navigating bureaucratic processes through these systems often leads to disenfranchisement and disengagement.

Case Study 1 below shows how a participant with complex needs faces additional barriers to accessing the support services they are entitled to. It is imperative that the NDIS functions as effectively as possible to ensure all people have access to appropriate supports.

CASE STUDY 1: Charlie*

Charlie has a range of needs requiring specialist service support, with disabilities including cognitive impairment and psychosocial disability, as well as drug and alcohol misuse, and involvement with the justice system. After spending ten weeks in prison, Charlie came to a Jesuit Social Services’ residential-based living skills program. When he was released from custody, Charlie was expected to navigate a complex system that he had no prior knowledge of in order to secure an appropriate NDIS plan to fund services, including Home and Living supports and specialist assessments. The complexity of this process and the significant wait times involved has left him without the necessary supports to adequately address the challenges he faces, including his offending behaviour.

*Participant names have been changed to protect privacy.

Fixed pricing structure

While the service delivery, structure and pricing of the NDIS may meet the needs of many Australians, greater pricing flexibility is required to adequately cover cost of staff and support for people with complex needs. Jesuit Social Services does not currently provide direct disability support (e.g. ‘Assistance with Self-Care Activities), outside of Perry House where we are a Specialist Forensic Disability Provider. This is because the financial modelling for support provision contained within the NDIS Disability Support Worker Cost Model Assumptions and Methodology 2021-22 is not viable for the cohort of people we work with. Current prices set by the National Disability Insurance Agency (NDIA) are insufficient and do not reflect service delivery realities. This inflexibility in pricing means that the cost of training and remunerating highly skilled and experienced staff for support and services delivered are not fully covered for those with complex challenges. Therefore, at present our work with the NDIS primarily consists of Support Coordination. More tailored support, particularly for people with multiple and complex needs, requires more flexible pricing that considers the realistic cost of providing quality intensive support by skilled staff, including on-call services. The NDIS pricing structure must be suitably flexible to meet the complex and often compounded needs of the diverse range of participants supported by the scheme.

Flexibility challenges and limited responsiveness

The Disability Royal Commission’s Interim Report found that many participants shared a strong view that they had been let down by the NDIS. This was largely due to the complexity of the system with participants reporting it was intimidating, difficult to navigate and involved long waiting times to receive the right support for their specific needs.2 Jesuit Social Services’ staff have also encountered issues around limited flexibility and responsiveness to the needs of the people we work with. As demonstrated in Case Study 2, when a participant with a disability exits custody they require urgent funding for transitional supports to establish new housing and living arrangements. This can be a lengthy process and challenging to secure due to the high volume of evidence that is required to support NDIS package applications and difficulties with sourcing suitable qualified practitioners to conduct assessments. The significant waiting times to have assessments undertaken mean that participants are missing out on the transitional supports they need, often for a number of months.

CASE STUDY 2: Darcy*

Darcy is a 21-year-old young man who has an intellectual disability and a history of involvement with the justice system. Darcy’s Disability Justice Worker and Specialist Support Coordinator identified the need to build evidence for a review of his current NDIS plan to support his new living arrangements upon exiting custody. As part of this process, Darcy was referred to a neuropsychologist as well as a specialist occupational therapist for a Supported Independent Living package assessment. This was initiated in June 2021 and almost a year later, there has been little progress. Contributing factors include continual turnover of both Support Coordination and Allied Health staff. The lack of flexibility in applying for funding and the delays this can cause is particularly challenging for our participants.

*Participant names have been changed to protect privacy.

Responding to the consultation questions

Do you believe the new NDAF encompasses your vision of advocacy? If not, what changes are required?

The NDIS is premised on market-based mechanisms emphasising consumer choice and control. The new Framework reflects this by largely focusing on the individual and self-advocacy. In doing so, the Framework does not encompass Jesuit Social Services’ vision of advocacy as articulated in our key foundational document – the Our Way of Working Framework.3 At Jesuit Social Services, we work alongside people to help them overcome the barriers they face to reach their full potential. Our programs assist individuals and communities while simultaneously developing the evidence base to inform our advocacy. In doing so, we take a collective approach to advocacy and believe that significant change can only be realized through structural reform that addresses fundamental inequalities.

Through our experience, Jesuit Social Services has found a disconnect between the individual-centred NDIS approach and the needs of people we work with, including their ability to effectively participate in the NDIS service system. While this approach may be appropriate for most Australians with a disability, we have found that many of the people we work with have experiences of trauma, justice involvement and other challenges which can make it difficult for them to navigate the NDIS service system and self-advocate. They might also have fractured relationships with their families who would otherwise assist them with accessing the NDIS

2 Commonwealth of Australia (2020). Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Interim Report. Canberra. (Weblink) 3 Jesuit Social Services (2018). Foundation Document. (Weblink)

packages and services they are eligible for as well as advocate for their support needs. From our experience, these people often require long-term support to navigate the complex web of funding and service systems to begin achieving their goals. We therefore recommend for the Framework to extend its vison to cater for those with complex needs who may require tailored support to self-advocate.

Recommendation 1: The Framework to extend its vison to cater for those with complex needs who may require tailored support to self-advocate.

Principles

Are the principles of the NDAF appropriate for guiding the delivery of advocacy for people with disability in a changing disability environment, including in the context of the NDIS? If not, what changes are required?

Overall, Jesuit Social Services believes that the Framework principles are appropriate for guiding the delivery of advocacy for people with a disability. We provide feedback on specific principles below.

Access to supports (pg. 4)

We welcome this principle; however, the Framework must go further to ensure that access to supports is timely and appropriate with skilled practitioners to assess for needs and deliver services. Availability of supports and flexibility in allocating funding need to reflect the current market gaps in key allied health areas and Support Coordination, as well as the impacts these have on slowing the evidence gathering process for supports.

Recommendation 2: The Framework principles to articulate the requirement for timely access to supports with appropriately skilled practitioners to assess for participant needs and deliver services.

Justice (pg. 4)

Jesuit Social Services has encountered significant challenges for our participants when faced with the NDIS plan review process. When participants dispute an NDIS appeals decision, such as a decision not to review a plan, participants and families have limited access to legal support and have to defend themselves against NDIS lawyers. Further to this, legal processes and lengthy waiting times for a review can be taxing on participants who are already facing multiple challenges. We suggest that the Framework be changed to reflect a more equitable approach to justice with provisions for more accessible legal support.

Recommendation 3: The Framework principles to reflect a more equitable approach to justice with provisions for more accessible legal supports through the appeals process.

Person-centred approach, “foster independence through educating individuals in self-advocacy” (pg. 4)

Jesuit Social Services has found that the participants we work with who experience multiple and complex challenges may require tailored support to self-advocate. These people’s lives can be chaotic and in crisis which is not conducive to self-advocacy. This principle assumes that all people with a disability can self-advocate and do so in a complicated service system such as the NDIS. Please see our response to question 1 for more detail.

Outcomes

Are the outcomes of the NDAF clear and achievable? Should different ones be included? If so, what should be included?

Generally speaking, Jesuit Social Services supports the outcomes included in the Framework. We provide specific feedback below to strengthen the outcomes and ensure they are achievable. This broadly includes recommendations for a disability service system, including both government and providers, that is more responsive and flexible to the requirements of participants with complex challenges so they are able to access the supports they need to reach their full potential.

“People with disability enjoy increased choice, control and wellbeing” (pg. 5)

The NDIS is a market-based system with a fixed pricing structure and while it may be appropriate for many Australians with a disability, current prices and the emphasis on choice and control once again fails to capture the experiences and capacities of the complex needs cohort we work with. Please see our response to question 1 for more detail.

“People with disability, including those experiencing multiple disadvantage, are supported to have effective interactions and access to disability supports and services and/or mainstream services and facilities” (pg. 5)

It is our experience that people who have intersecting, complex needs feel caught in the middle of several systems and grow increasingly frustrated and disengaged from these systems over time. The Disability Royal Commission also heard accounts of the detrimental effect of the NDIS on existing partnerships between health and disability services, and the need for more coordination between them.4 Often disagreements between services over responsibilities and costs come at a residual cost of participants’ wellbeing, as they are asked to retell past difficulties and traumas to satisfy various organisations’ compliance requirements. This in turn can lead to additional costs to the services themselves as they may be required to respond to a participant’s increasing unmet needs across justice, health, education and other mainstream domains.

When supporting participants with navigating the NDIS system and applying for a change of circumstance of their NDIS plan, our staff have experienced extensive time delays at each step of the process (e.g. assessment, planning, review). As discussed above, our staff have observed significant waiting times to have assessments undertaken due to difficulties with sourcing suitable allied health professionals. This process is highly taxing on participants who are being denied urgent transitional supports they need.

Greater flexibility measures are crucial for participants we work with to allocate packages in a timely manner. There is a need for significant resourcing for the assessment and planning process to enable sufficient time to develop suitable plans. This can allow participants to access transitional housing and living supports while suitable long-term living arrangements are explored. Flexibility is central to positive participant experiences for those we work with due to the complexity of their needs and multiple service systems they engage with.

Recommendation 4: The Framework to include an outcome around guaranteeing greater coordination between the disability and mainstream services system.

Recommendation 5: The Framework to include an outcome around improved flexibility of the NDIS service system, in particular, funding to improve assessments and planning to ensure more timely access to packages and crucial support.

4 Commonwealth of Australia (2020). Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability: Interim Report. Canberra. (Weblink)

CALD and Aboriginal and Torres Strait Islander communities experience significant barriers to accessing mainstream services, cultural barriers and disability related stigma. The Framework outcomes have positive elements such as goal alignment for shared decision making in the National Agreement on Closing the Gap and to guarantee CALD communities have access to culturally safe disability advocacy.5 We seek to highlight however, that the system needs to be more culturally responsive by providing both accessible and culturally appropriate communication about how to engage with services and to also ensure it does not solely put the onus on Aboriginal and Torres Strait Islander and CALD organisations and communities to navigate the system and advocate for themselves. Increased funding to community organisations that work with Aboriginal and Torres Strait Islander and CALD communities is crucial in supporting them to understand and assist in apply for participating in the NDIS.

Recommendation 6: The Framework to have a greater focus on establishing a culturally responsive disability service system, including increased funding for community organisations that work with Aboriginal and Torres Strait Islander and CALD communities to support them to understand, apply for and participate in the NDIS.

“People with disability have a range of ways to express their views and wishes about supports and services” (pg. 5)

Jesuit Social Services’ staff have observed a limited range of ways that participants with multiple and complex needs can express views about choosing a Support Coordinator or Provider. In our experience, there is both a lack of suitable options as well as unhelpful assumptions from the NDIA around participants’ access to resources that can help make the most informed choice.

In building greater capacity for decision making, it is necessary to assess the participants’ capacity and existing supports and advocacy on an individual basis, given those with very complex needs may need more assistance and support in making informed decisions than others. Irrespective of the participant’s capacity, an appropriately skilled and experienced Support Coordinator can work alongside a participant with complex challenges to support them to make informed decisions.

Recommendation 7: The Framework to have a greater focus on building capacity for decision making, specifically by outlining a process by which the capacity of participants is assessed on an individual basis, given those with very complex needs may need more assistance and support in making informed decisions than others.

“People with disability to be actively involved in all aspects of the development, delivery and evaluation of disability and broader government policies, programs and services that impact them.” (pg. 5)

We support this outcome and strongly advocate for the active participation of people with a disability to be involved in the decisions and processes affecting them. However, we note that more must be done to support immediate needs before participation in development, delivery and evaluation of disability policy. This includes reforms needed for a flexible and responsive system, timely assessments and change of circumstance process, access to safe and secure housing, education and employment. Only once these crucial reforms and supports are actioned can our participants be empowered to participate in the broader policy process.

5 Department of Social Services. (2022). Draft new National Disability Advocacy Framework 2022-25. Australian Government. (Weblink)

Additional outcomes to be included

Jesuit Social Services recommends for the inclusion of ‘Strengthening the capacity of community services sector for collective advocacy’ as a key outcome of the Framework. In order to develop effective mechanisms to ensure genuine engagement with people with multiple and complex needs and their carers/families, investment is required in community sector organisations to establish avenues for meaningful participation and advocacy.

Recommendation 8: The Framework to include ‘Strengthening the capacity of community services sector for collective advocacy’, including a particular focus on people with complex needs.

Jesuit Social Services also recommends for the Framework to include outcomes for specific cohorts such as:

People with multiple and complex needs
Women with disability in the justice system
Children and young people with disability in the youth justice system
People with ABIs in the justice system

Recommendation 9: The Framework must include outcomes for specific cohorts such as people with multiple and complex needs; women with disability in the justice system; children and young people with disability in the youth justice system and; people with acquired brain injuries in the justice system.

Responsibilities, reform and policy directions

Are the responsibilities, reform and policy directions of the NDAF relevant or should different ones be included?

The Framework includes a high-level overview of roles, responsibilities and reform directions which we generally agree with. However, without the necessary detail as to how the Framework will achieve its outcomes, it is challenging to provide genuine feedback. In particular, we seek clarity around the roles and responsibilities of the NDIA and the Commonwealth to progress action. Further, the Framework would be strengthened with the provision of key actions, indicators and responsibility under each outcome.

We support the commitment to improving the coordination and communication across the disability sector (pg 6.) but note that this will require significant work, reform and investment. The Framework provides little indication how this will be achieved.