NDIA Accountability Project

Experiences and risks of living in Private Congregate Care settings in rural, regional and remote Australia

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SUBMISSION TO THE NATIONAL DISABILITY INSURANCE

SCHEME JOINT STANDING COMMITTEE- NDIS PARTICIPANT

EXPERIENCE IN RURAL, REGIONAL AND REMOTE

AUSTRALIA

PRIVATE CONGREGATE CARE ALLIANCE SUBMISSION

23 February 2024

Written by Muriel Cummins on behalf of the Private Congregate Care Alliance, which includes representatives from the following organisations:

Mind Australia

St Vincent’s Mental Health Service, Melbourne

Wintringham Supports.

Elroy Dearn, researcher

This submission does not intend to represent individual organisations within the PCC alliance, but rather represents the views of this collective group.

Private Congregate Care Alliance Submission 16th February 2024 1

PCC

RECOMMENDATIONS:

  1. The Australian Government recognise and promote the right to pathways to move on from PCC settings, and work to end segregated living, including SRS and PCC settings, through intentional strategies in tune with Disability Royal Commission (DRC) report Volume 7, Inclusive Housing, particularly DRC Recommendations 7.38 and 7.39.

  2. The Australian Government set national targets, including monitoring rural and remote settings, to ensure people living with disability within PCC settings are able to access stable, secure and affordable housing within their community, with the necessary support.

  3. The Australian Government work with its state and territory counterparts to establish a joint taskforce with the powers necessary to investigate any instances where NDIS participants are exploited, coerced or abused while being supported by the state regulated Supported Residential Services sector (as previous recommended by this Joint Standing Committee) [1].

  4. The Australian Government work with the disability sector to build strategies to implement the recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability final report (DRC report) [2] and the NDIS Review final report [3].

  5. INTRODUCTION The PCC Alliance is comprised of a group of organisations working towards the goal of systemic recognition of the unmet needs of people with disability who live in PCC settings, including Support Residential Services (SRS) in Victoria. The PCC Alliance welcomes the opportunity to contribute to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry – Participant experience in rural, regional and remote Australia.

The PCC Alliance highlights that people with disabilities, including NDIS participants, experience the challenges and risks of living in PCC settings in an amplified manner, in rural, regional and remote areas.

  1. ABOUT THE PRIVATE CONGREGATE CARE (PCC) ALLIANCE Established in 2018, the PCC Alliance is a national alliance of organisations working towards the goal of systemic recognition of the unmet needs of people with disability who live in PCC settings throughout Australia. The PCC Alliance is comprised of a diverse membership including legal, advocacy, disability representative, research, mental health, allied health, housing and welfare organisations.

Private Congregate Care Alliance Submission 16th February 2024 2

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  1. ABOUT PCC SETTINGS Private Congregate Care (PCC) facilities are for-profit accommodation and support facilities that house large numbers of people with psychosocial disability and other disabilities. They exist Australia-wide, and are titled supported residential services (SRS) in Victoria, Psychiatric hostels in WA, Assisted Boarding Houses in NSW, Supported Residential Facilities in SA and Residential facilities level 3 in Queensland. Policy recommendations are also relevant to a proportion of people with disabilities living in other forms of segregated or insecure housing.

Collectively, it is estimated that PCC accommodate thousands of Australians with disability. Evidence provided at Disability Royal Commission Hearing 26 (September 2022) confirmed that in Victoria, SRS accommodate up to 4000 people, 79% of whom live with disability. A conservative estimate is that 30% or approximately 1000 are NDIS participants. The SRS census 2018 says 69% of people in pension-level SRS have a mental health/psychiatric disability (Victorian Government). There are currently 111 SRS in Victoria. SRS accommodate up to 80 people at a single residence. Many residents do not have contact with family members, independent advocacy or the support of a legal guardian. Substantial evidence indicates that PCC residents are at heightened risk of exploitation, violence, abuse and neglect [4][5].

“SRS have been described as a type of 21st century poorhouse, with a mix of residents with disabilities, ageing and complex needs living in poverty in an institutional setting. Their purpose has been categorised as a type of ‘end in itself’, such are the limited opportunities for recovery and rehabilitation for residents.”[13]

PCC settings are frequently experienced as insecure, unsafe and unsustainable. Research by Dearn 2023 indicates SRS lack core elements of home including security, stability, privacy [5] Residents in SRS often feel unsafe and when bullying or violent incidents occur, find that no one listens or is there to help. These are institutional environments over which residents have little control – who you live with, doing your own washing, even making a cup of tea for a visitor are not options in SRS [5]. Further, the untherapeutic nature of SRS has a negative impact on mental health, leaving some people in a revolving door between mental health facilities and SRS, underscoring the inadequacy of these settings.

Accommodation options are non-existent for many residents as the SRS fee (85-95% of the disability support pension) leaves residents living in poverty, severely limiting their option to move anywhere else [5]. Stable, secure and supported accommodation is a social determinant of both health and mental health, and is essential to the safety and well-being and people experiencing mental ill-health and psychosocial disability. Safe, supported housing can reduce healthcare costs, increase well-being and increase social inclusion [4] [5].

At the time of writing, there were approximately 28 Supported Residential Services located in rural and regional Victoria, collectively housing hundreds of people with disabilities including psychosocial disabilities.

Private Congregate Care Alliance Submission 16th February 2024 3

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  1. PCC SETTINGS IN RURAL, REGIONAL AND REMOTE AUSTRALIA• PCC settings exist Australia-wide, however there is no current national dataset to monitor and map their presence across states and territories. Here, we focus on SRS in Victoria to demonstrate the amplified nature of risks and challenges faced by PCC residents in rural and regional settings. The risks and challenges are amplified in rural and regional areas because:

  • There are fewer housing options and fewer SRS, therefore less choice and next to nil pathways to move on from an SRS in a rural or regional area.

  • Should an SRS resident want to, or need to, move out, they are frequently offered an alternative SRS, sometimes up to hundreds of kilometres away [6]

  • Thin markets in rural and regional areas lead to limited choice of, and access to, providers, increasing the likelihood of NDIS supports provided by single providers in a ‘closed’ system of care. Thin markets further reduce access to allied health and a skilled disability workforce [7].

  • Historical ‘out of sight, out of mind’, institutional models of disability accommodation meant significant numbers of large institutions were located regionally, in Victoria and nationally [8]. SRS have been described as modern-day institutions [5] and in regional areas, carry on the legacy of institutional care.

In recent years, there have been examples of SRS facilities facing closure in regional Victoria [6][9]. These closures are frequently without warning, and due to issues with financial viability. In June 2023, threat of closure of an SRS in northern Victoria meant residents were offered accommodation in another town 200 kilometres away, resulting in distress, and the prospect of displacement and further estrangement from family members [6].

Alternative housing options and pathways out of PCC are even more limited in rural and regional areas, rendering many people with disabilities effectively trapped in these settings. As described above, close to 70% of people living in pension-level SRS in Victoria, live with psychosocial disability, indicating the high proportion of people with psychosocial disability living in segregated and institutional settings Australia wide. People with psychosocial disability experience high rates of housing instability [10], institutionalisation [5], and homelessness[11].

The recommendations made by the NDIS Review report [3] regarding the establishment of an ‘early intervention’ pathway for psychosocial disability, must be scrutinised from the perspective of access to housing options for the psychosocial disability cohort. The NDIS Review recommendation for the early intervention pathway, specifies that this cohort will access only a limited range of defined supports. Very concerningly, Home and Living supports, such as Supported Independent Living (SIL) and Specialist Disability Accommodation (SDA) do not appear to be specified within the prescribed list of supports, indicating that these supports would not be accessible to most people living with psychosocial disability, who are NDIS participants on the ‘early intervention’ pathway. In addition, the NDIS Review recommended the termination of Improved Liveability Supported Disability accommodation, the SDA design most likely accessed by people living with psychosocial disability when they meet eligibility criteria.

These NDIS policy changes could effectively block people with psychosocial disability who are NDIS participants on the ‘early intervention’ pathway from accessing NDIS-funded housing supports, effectively removing essential pathways out of SRS and PCC settings. These NDIS changes, if endorsed by Governments, will further entrench and condemn people with psychosocial disability to segregated institutional life, in PCC and SRS settings.

Private Congregate Care Alliance Submission 16th February 2024 4

pee The PCC Alliance recommends that an early intervention pathway be co-designed and carefully• implemented, without jeopardising equal and timely access to NDIS funded home and living supports where required.

  1. ROYAL COMMISSION INTO VIOLENCE, ABUSE, NEGLECT AND EXPLOITATION OF PEOPLE

WITH DISABILITY

The evidence provided to the DRC at Hearing 26 clearly underscored concerns for the safety and unmet disability needs of people living in PCC settings, specifically those residing in Supported Residential Services in Victoria. The evidence highlighted the inadequacies of current regulatory and safeguarding systems. As the Honourable John Ryan, Disability Royal Commissioner, stated in Hearing 26 when speaking about SRS:

“Because it looks to me this is a broken model which needs to either be significantly reformed or abolished all together.” [12]

The PCC Alliance recommends that Australian governments recognise and work towards a recommendation made by the DRC published report, Outcomes associated with ‘inclusive’, ‘segregated’ and ‘integrated’ settings: Accommodation and community living, employment and education”, which recommended that private congregate care settings must be closed.

“Congregated accommodation settings (e.g., institutions, hostels, and boarding house-like facilities) need to be closed. They are unsafe and unable to deliver on the expectations of (and obligations imposed by) the UNCRPD and the objectives of the National Disability Insurance Scheme (NDIS) Act.” [4]

In principle the PCC Alliance supports DRC Recommendation 7.38, which recommends

“Minimum service standards and monitoring and oversight of supported residential services and their equivalents”.

The PCC Alliance advocates that this recommendation be prioritized and strategies to implement it, shared across all governments, including State and Territory governments. This is consistent with the recent NDIS Joint Standing Committee final report on NDIA Capability and Culture which recommended establishing a joint Taskforce, comprising Federal, State and Territory governments and relevant regulatory bodies, to form a critical safeguard for NDIS participants living in SRS [1].

In addition, the PCC alliance strongly supports the DRC recommendation that all levels of government, across all departmental portfolios, work towards the goal of desegregating living environments for people with disabilities, and that people living in institutional settings are enabled to access safe housing, as per DRC Recommendation 7.39. The PCC Alliance supports in principle DRC recommendations 6.21 & 10.5 focused on increasing investment in independent advocacy, as a strategy to prevent abuse, neglect, and exploitation of people living in PCC.

  1. SUMMARY The PCC Alliance implores the NDIS Joint Standing committee to consider the evidence and recommendations provided in this submission, regarding the circumstances facing people with disability, including NDIS participants, living in PCC settings, in rural, regional and remote Australia.

Private Congregate Care Alliance Submission 16th February 2024 5

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References

  1. Recommendation 11: Capability and Culture of the NDIA – Parliament of Australia (aph.gov.au) 2. Final Report - Executive Summary, Our vision for an Inclusive Australia and Recommendations | Royal

Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

  1. *Working together to deliver the NDIS - supporting analysis (ndisreview.gov.au)

  2. McVilly, K., Ainsworth, S., Graham, L., Harrison, M., Sojo, V., Spivakovsky, C., Gale, L., Genat, A., Zirnsak, T. (2022). Outcomes associated with ‘inclusive’, ‘segregated’ and ‘integrated’ settings: Accommodation and community living, employment and education. A research report commissioned by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. University of Melbourne, Australia. P.50, published March 07 2023

  3. Dearn, E., Ramcharan, P., Weller, P., Brophy, L. & Johnson, K. (2022) Supported residential services as a type of “total institution”: Implications for the National Disability Insurance Scheme (NDIS). Australian Journal of Social Issues, 00, 1–17. Available from: https://doi.org/10.1002/ajs4.233

  4. Merriwa Grove disability care closure leaves vulnerable residents facing relocation - ABC News

  5. Chapter 5 – Parliament of Australia (aph.gov.au)

  6. Victoria’s remaining institutions: where to from here? - ABC (none) - Australian Broadcasting Corporation

  7. Bignold Park SRS facility in Bendigo, Victoria, ordered to close (theweeklysource.com.au)

  8. National Housing and Homelessness Plan Issues Paper (dss.gov.au)

  9. The Way Home: How can the housing and homelessness plan meet the needs of people experiencing significant mental illness? Homelessness Australia webinar 4 September. Including the paper Dearn E 2023 ‘Supported Residential Services (SRS) as a form of Homelessness

  10. DRC Public Hearing 26, 02 September 2022, Transcript p.40 Public hearing 26: Homelessness, including experience in boarding houses, hostels and other arrangements |

Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

  1. Dearn, E 2023 Are proprietors of supported residential services (SRS) the right people to support residents into better housing? Power to Persuade Blogpost. https://www.powertopersuade.org.au/blog/are-proprietors

of-supported-residential-services-the-right-people-to-support-srs-residents-into-better-housing/29/11/2023

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