Submission to the National Disability Insurance Agency’s Home and Living Policy

September 2021

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 their love and care of people, community, land and all life.

Jesuit Social Services is a social change organisation working to build a just society where all people can live to their full potential. For over 40 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 Western Sydney and the Northern Territory.

Our practical support and advocacy encompass five main areas:

Justice and crime prevention – people involved with the justice system.
Mental health and wellbeing – people with multiple and complex needs and those affected by trauma, suicide, and complex bereavement.
Settlement and community building – recently arrived immigrants and refugees, and disadvantaged communities.
Education, training and employment – people with barriers to sustainable employment.
Gender and culture – providing leadership on the reduction of violence and other harmful behaviours prevalent among boys and men, and building new approaches to improve their wellbeing and keep families and communities safe.
Ecological justice – inviting discussion on what practices, policies and actions can be taken to build an ecologically just society.

Our programs address the needs of specific populations including people with intellectual disabilities, people with acquired brain injury (ABI), people in the youth and adult justice systems, vulnerable young people, and people with multiple and complex needs. We work with our participants on a range of issues such as mental illness, substance use issues, unemployment, poor physical health and homelessness. In doing so, we offer disability supports, services and accommodation.

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 influence 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.

Introduction

Jesuit Social Services welcomes the opportunity to contribute to the development of the National Disability Insurance Agency’s (NDIA) Home and Living Policy. We believe that every person living in Australia should have access to the opportunities in life that enable them to thrive – to access safe and affordable housing, to complete their education, to get a job, to raise their children in safe communities and to see the next generation flourish. This submission draws on our experience engaging with disadvantaged people and communities, 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 as we are a registered National Disability Insurance Scheme (NDIS) service provider and we provide supports to NDIS participants with highly complex needs.

Our submission addresses the following themes of the proposed Home and Living policy raised in the consultation paper:

Theme 2: Supporting you to be an informed and empowered consumer;
Theme 3: Supporting you to make decisions;
Theme 4: Reforming the funding model; and
Theme 5: Improving choice and control through flexible budgets.

Overall, Jesuit Social Services finds that the proposed Home and Living policy presents some promising elements, however, we are concerned that the policy may not may not meet the needs of people with a disability who have multiple and complex needs, and that these people may not receive the support they require to lead the lives they are capable of.

1. Improving access to the NDIS

1.1 Barriers to accessibility

Jesuit Social Services works with a small, highly complex, cohort of people with mild-to-moderate intellectual or cognitive disabilities and other complex needs or life circumstances, including homelessness, substance misuse, involvement with child protection and the justice system, and experiences of trauma, including family violence. This cohort often requires long-term support to navigate relevant service systems and is often eligible to receive a combination of federal and state government financial support packages, including through the NDIS. Involvement in the justice system is also associated with significant disruption and discontinuity in service provision for this cohort.

The NDIS service system can be inflexible to the needs of the complex cohorts that Jesuit Social Services supports. This is strongly evidenced in the Home and Living Supports domain – which includes Supported Independent Living (SIL) – where the process heavy and evidence-driven framework causes delays that last up to months for participants to receive suitable funding solutions that can help stabilise their immediate housing and support needs. For people with a psychosocial disability there is even further complexity in that they must show they have a ‘substantial and ongoing disability need’ in order to become an NDIS participant. This runs counter to the recovery model widely adopted by mental health professionals that emphasises the episodic nature of mental health conditions1.

The NDIS Quarterly Report found an increase in NDIS participants seeking more choice and control over their support package2. It also highlighted that the current NDIS planning process limits participants’ ability to have choice and control over how they use their package3. The proposed Home and Living Policy aims to allow more individual choice and control for decision making around a participant’s home and living arrangement, yet many of the people we work with do not necessarily have the ability to navigate the complexities of the NDIS and engage with appropriate services for their individual needs.

Accessibility challenges can be compounded for people from Culturally and Linguistically Diverse (CALD) backgrounds who face considerable difficulty when engaging with the NDIS not only because of language proficiency, but also because it is a highly complex and technical system to navigate. Further, self-stigma and a lack of accessible information about disability may prevent people from CALD backgrounds from identifying as having a disability4. Aboriginal and Torres Strait Islander communities face similar barriers to accessing and navigating the NDIS and the disability sector more generally. Aboriginal community-controlled community organisations have reported common challenges including uncertainty about where referrals could be made,

— footnotes at bottom — 1 Tune, D. (2019). Review of the National Disability Insurance Act 2013: Removing red tape and implementing the NDIS Participant Service Guarantee. Canberra: Australian Government. 2 NDIA, (2021). 3 Ibid. 4 Knifton, L. (2012). Understanding and addressing the stigma of mental illness with ethnic minority communities. Health Sociology Review, 21(3), 287-298.

and which services were culturally safe or eligibility criteria for disability packages5. Lack of access to culturally safe services that meet the specific needs of Aboriginal and Torres Strait Islander peoples with a disability limit their ability to exercise their right to self-determination and choice6.

The Home and Living Policy states that it will support participants and their families to be informed and empowered consumers and be aware of the options before purchasing supports best suited to their needs. We believe there is a disconnect between the cohort we work with and the emphasis on market-based mechanisms that focus on the individual. There is a clear socioeconomic divide between those who can self-advocate and those who cannot, and therefore, the services they have access to. Many of the young people we work with have fractured relationships with their families who would otherwise assist them with navigating the NDIS service system and advocate around their support needs. This is further exacerbated by NDIS funding allocation differences between higher and lower socioeconomic areas as reported by the June NDIS quarterly report7. The report shows a difference of 9 per cent in the average annualised plan budgets for participants between the lowest and highest socio-economic decile8.

Our Dropping off the Edge research shows that in areas of greater disadvantage in Victoria, there is a strong correlation between receiving disability support and other indicators of disadvantage around internet access, education, income and type of employment9. Those living in 3 per cent of the most disadvantaged communities in Victoria are 2.4 times more likely to be on disability support. These findings coupled with the socioeconomic differences in funding suggest that often the most impacted people with significant and complex needs are receiving the least service with limited opportunity to become informed and empowered consumers.

1.2 Building capacity and improving flexibility and accessibility

In supporting participants to be informed and building capacity for decision making, it is necessary to assess the capacity of the participant and their existing supports and advocate 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 to support them to make informed decisions. Through our experience, we know that building trusting relationships is integral to understanding the whole person and their support needs. Therefore, our practice approach is relationships-based and premised in an understanding that building trust takes time and is achieved through a consistent response, respect and the provision of a safe environment.

Jesuit Social Services always works with participants to build their capacity as much as possible. Guided by Our Way of Working Practice Framework, we recognise the importance of striking a balance, given independent decision-making is not always a realistic goal in the NDIS context. Support coordination should not be priced solely on the basis of building a participant’s capacity for decision-making and independence because some people’s disability means they require long-term support in decision-making, especially when dealing with complicated NDIS models such as Home and Living and SIL.

In improving accessibility, resources must be also be directed to support people with complex needs and people from CALD backgrounds and Aboriginal and Torres Strait Islander communities to understand the NDIS and assist them in both applying for and participating in the NDIS. We would also like to see implementation of the Tune Review’s recommendation that the ‘NDIS Act and Rules are amended to provide clearer guidance

— footnotes at bottom — 5 Victorian Aboriginal Child Care Agency, (2020). VACCA’s response to ‘Issues Paper: The Experiences of First Nations Peoples with Disability in Australia’ 6 Ibid. 7 NDIA, (2021). NDIS Quarterly Report to disability ministers. 30 June 2021. National Disability Insurance Agency. 8 Ibid. 9 Vinson, T., & Rawsthorne, M. (2015). Dropping off the edge: Persistent communal disadvantage in Australia. Jesuit Social Services and Catholic Social Services Australia.

for the NDIA in considering whether a psychosocial impairment is permanent, recognising that some conditions may be episodic or fluctuating’10.

Recommendation 1: Increase funding to assist people with complex needs and people from Aboriginal and Torres Strait Islander and CALD backgrounds to understand and navigate the NDIS, particularly the types of accommodation packages they are eligible for.

Process-heavy systems, particularly within SIL and housing options, limit the scope of options to existing funding models that contain little-to-no flexibility for people to creatively explore more individualised solutions. While Independent Living Options (ILO) and other flexible housing models are critical for the cohorts we work with, these flexible options require strong collaboration with other mainstream systems such as the justice system, to make a real difference to the lives of the cohort we work with. For example, when a person with a disability leaves custody and requires accommodation, often the NDIS processes required to get that person funding are lengthy and cause delays and complications. This can have significant impacts on cohorts that are already facing multiple complex vulnerabilities as post-release support and access to their NDIS funding to support safe and secure housing is critical to ensuring that individuals do not exit prison into homelessness or unsuitable housing. The provision of support for people leaving prison is critical to reducing reoffending and building safe communities.

Jesuit Social Services recommends that the proposed Home and Living policy provides greater flexibility across NDIS housing packages that allows rapid response to the needs of complex cohorts. This includes the provision of a transitional housing funding model that can allocate funding quickly and acknowledges that required supports cannot yet be fit to a schedule as they are in SIL. Supported Disability Accommodation (SDA) packages provide specialist housing to people with extreme functional impairment and high support needs. There is a critical need for a more flexible approach by the NDIA, including the provision of SDAs for people with psychosocial disability or behavioural issues.

Recommendation 2: Provide a more flexible approach to meet the housing needs of people with multiple and complex needs, including SDAs for people with psychosocial disability or behavioural issues.
Recommendation 3: Develop a transitional housing funding model that can allocate funding quickly to meet immediate needs of complex cohorts.

2. Implement a flexible pricing structure

Jesuit Social Services highlights that we will not be a support provider due to the restrictions of the price guide, and due the complexity of needs of the people we work with, we require a highly experienced, skilled and qualified workforce. We are only undertaking Support Provision in Perry House as we are transitioning to a blended funding model through maximising an NDIS package of a young person and funding provided by Disability Justice (DFFH) as part of the Specialist Forensic Disability Program. We are not looking at Support Provision across any other program at this point.

While the service delivery structure and pricing of the NDIS may meet the needs of many Australians, greater flexibility is required to provide access to highly skilled staff that can adequately support people with complex needs such as intellectual disabilities or acquired brain injuries (ABI). Therefore, the NDIS pricing structure

— footnotes at bottom — 10 Tune, D. (2019).

must be suitably flexible to meet the complex and often compounded needs of the diverse range of participants supported by the scheme.

The consultation paper mentions that a new NDIS Home and Living policy will need to work alongside the existing Specialist Disability Accommodation Pricing and Payments Framework. The Framework states that living alone is more expensive than living with other people and that the NDIS cannot afford to pay for the support required for all participants to live alone. It seems that there is tension here where the paper both highlights that group homes do not represent an ordinary life, yet states that the NDIS cannot afford to pay for people to live alone. This makes for a substantial ethical issue while also going against the NDIS principle of ‘choice and control’, which is one of the pillars of the NDIS.

Efforts critical to reforming the funding model should include reducing the burden of evidence placed on individuals and support staff. This would involve allocating flexible core funding rapidly to meet the immediate accommodation needs of participants as soon as a need has been identified.

Recommendation 4: Implement a pricing structure that is flexible to ensure that it can engage highly skilled staff to meet the complex needs of the diverse range of participants supported by the scheme.

3. Enhancing access to specialist transitional housing

The availability of safe, secure and stable housing is an issue for many, particularly those with disabilities and other complex needs. In particular, there is a lack of housing options and integrated supports for vulnerable young people with complex life circumstances or needs, including those who may be experiencing substance misuse, mental health concerns, trauma, or may be transitioning from out-of-home care or the justice system. Responding to this significant service gap, Jesuit Social Services delivers Perry House – a supported transitional housing program for justice system involved young people aged 16-26 with intellectual disabilities who are at risk of, or are experiencing, homelessness. We are in the process of transitioning to a blended funding model utilising NDIS funding and Disability Justice.

Perry House is a 24-hour staffed residential program which assists people to develop living skills, access appropriate support and employment and secure appropriate long-term housing. Up to four participants at a time reside at the house for up to 12 months, after which they are supported for a further four months in an outreach capacity to further develop independent living skills and engage with activities. Perry House is in the process of transitioning to a blended model of housing, utilising the supports in an NDIS plan and receiving supports that are not disability related through Disability Justice.

Given the complex needs of the cohort they work with, staff at Perry House are highly skilled and have knowledge across different service systems (e.g. Disability – state and federal, Youth Justice and Corrections). Perry House is a state-wide service, receiving an influx of referrals from regional centres. This speaks to a regional demand for individualised housing options and flexible funding for SDAs, beyond just standard SIL and group accommodation for young people with intersectional needs.

Through our experience, we have found that there is a significant gap in support services for young people with intersectional needs once they turn 18 years and Perry House is one of the only support services of its kind for this age group. Participants that have been supported by Perry House have built strong independence skills following engagement with the program and this had positive impacts for rates of recidivism.

The young people we work with face significant and compounded challenges in securing appropriate, safe and affordable housing in the private or community housing sector. Further, there is a significant lack of suitable funding arrangements for people moving to and from transitional housing such as Perry House. Short and

medium term accommodation has defined limits (30 and 90 days), whereas SIL processes take months and come with an expectation that the participant will be living in a property for several years and their supports are already well known. There is a significant need for the NDIA to implement more flexible funding options that can be accessed quickly for participants that are moving to and from transitional housing.

Recommendation 5: Implement flexible funding options that can be accessed quickly for participants that are moving to and from transitional housing.

4. Strengthening the interface of the NDIS and mainstream services

From our experience, the NDIS does not adequately meet the needs of participants who often do not fit its eligibility criteria and have intersecting, complex needs such as mental health concerns and experiences of trauma, out-of-home-care or justice involvement, grief and loss. It is crucial that people experiencing co-occurring issues are not compartmentalised and dealt with in isolation by the various systems that are funding and supporting them. It is our experience that the 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. Often disagreements between systems over responsibilities and costs come at a residual cost of participants’ wellbeing, as they are asked to retell past difficulties and traumas to satisfy the various stakeholders. This in turn leads to additional costs as these systems respond to participant’s decline in Justice, Public Health, Education and other mainstream domains.

Recommendation 6: Strengthen the interface of the NDIS and mainstream services so that co-occurring issues experienced by people with multiple and complex needs are not compartmentalised and dealt with in isolation by numerous service providers.

Jesuit Social Services believes the above recommendations can help create a fairer Australia that is inclusive of people with disability. We would welcome the opportunity to discuss these ideas with you further.

For additional information regarding this submission or to arrange a meeting, please contact:

Julie Edwards, CEO, Jesuit Social Services

T: 03 9421 7600

E: julie.edwards@jss.org.au