NDIA Accountability Project

Impact of proposed legislation on people with psychosocial disability living in private congregate care settings

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Community Affairs Legislation Committee

National Disability Insurance Scheme Amendment Bill 2024

PRIVATE CONGREGATE CARE ALLIANCE SUBMISSION

May 17th, 2024

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

  • Mental Health Legal Centre
  • Melbourne East Disability Advocacy
  • Mind Australia
  • Victorian Mental Illness Awareness Council
  • Wintringham Supports.

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

RECOMMENDATIONS:

  • Section 10 of the NDIS Bill is revised to fully reflect the UNCRPD, and uphold Australia’s obligations under this agreement, including to people with disabilities living in PCC.

  • The Bill be amended to avoid introducing potentially discriminatory ‘classification’ systems within the NDIS.

  • The Bill be amended to ensure critical NDIS foundations are placed within the primary NDIS legislation, rather than rules and operational guidelines to uphold the integrity of the Scheme (See section 4 of this paper)

  • The Australian Government respond to the NDIS Review final report in conjunction with the DRC report and the UNCRPD, prior to progressing NDIS legislative reform, to demonstrate a clear vision for the future that includes commitment to disability and housing rights of people with psychosocial disability living in PCC.

PCC ALLIANCE SUBMISSION TO THE LEGISLATIVE AFFAIRS COMMITTEE REGARDING THE NDIS AMENDMENT BILL 2024

The PCC Alliance appreciates the opportunity to contribute to the Legislative Affairs Committee consultation on the NDIS amendment Bill 2024 (hereafter referred to as the Bill). The PCC Alliance supports a safe and sustainable NDIS that functions to enable the inclusion, and the social and economic participation of people with disabilities in Australia.

This paper is intended to inform the Committee, policy makers and decision-makers regarding potential risks, gaps and solutions pertaining to the NDIS that may arise as a direct result of the Bill, for people living with disability living in private congregate care (PCC) settings, with a focus on psychosocial and complex disability. This group is amongst Australia’s most marginalised and disadvantaged and are likely to disproportionately experience the impact of large-scale NDIS policy change.

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 17 May 2024 2

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 significant 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. For example, 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- tlevel 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 [1][2][3].

“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.”[3]

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 [3] 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 [3]. Further, tthe untherapeutic nature of SRS, and other PCC settings, has a negative impact on mental health, leaving some people in a revolving door between mental health facilities and PCC, underscoring the inadequacy of these settings.

4. BILL IMPLICATIONS FOR PEOPLE LIVING IN PCC SETTING

The Bill is intended to provide scaffolding for the future NDIS reform. This scaffolding must provide equitable opportunity for all people living with disabilities, to live full and ‘ordinary’ lives, on a par with all Australians. The PCC Alliance is concerned that changes proposed in the NDIS Bill will provide legal avenues that may lead to a reduction in NDIS access, support, and choice and control, for people living in PCC. In this section, we propose amendments to the Bill to ensure people living in PCC can continue to access essential supports and continue to access supports that provide opportunity to create pathways out of PCC.

4.1. Section 10 NDIS Supports

Section 10 of the Bill describes the defined supports that will be funded by the NDIS should the Bill pass into law. Legal experts have raised concerns that the categories contained in the Bill are “too restrictive, and are drafted in a way that could have unintended legal consequences” and highlight that the definition contain in Section 10 can narrow the scope of funded supports through the NDIS [4]. Disability supports falling outside the definition documented in Section 10, will in future no longer be the responsibility of the NDIS. While the Bill uses aspects of the UNCRPD to define NDIS supports, this is selective and partial application of the UNCRPD. It is unclear from the current definition, if supports such as a broad range of assistive technology; psychosocial supports; support to access the community; support for economic participation; capacity building supports; will continue to be funded for NDIS participants who need them. Research has demonstrated that access to tailored supports is a key factor in enabling people to move on from PCC settings [5], and the PCC Alliance is concerned regarding the impact of a narrowed range of funded supports for this group.

4.2. Section 10 NDIS Supports – Home and Living

In addition, the definition of NDIS support contained in Section 10 appears to have implications for access to home and living supports. Article 19 (Living independently and being included in the community) of the UNCRPD is only partly and selectively reflected in Section 10. Article 19a states “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” . The drafting of the NDIS Bill raises questions around the extent the future NDIS will fund home and living supports, including those supports that can lead to pathways out of PCC environments.

Currently pathways out of PCC are very limited for many PCC residents, and Section 10 risks further limiting home and living solutions for this cohort. 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 [2] [3].

4.3. NDIS Participant Classification System

The Bill references ‘classes’ of participants, throughout the recent amendments. There is no such participant classification system in the current NDIS primary legislation. The Bill does not define what is meant by this term, or provide detail of a proposed new classification system. The PCC Alliance is concerned that the introduction of a classification system will create inequity within the NDIS, between or within disability groups. PCC residents frequently experience complex disability and may not fit neatly into a

Classification System Concerns

A classification system based on currently undisclosed criteria could disadvantage individuals or even lead to discrimination. Furthermore, as a social model of disability, the National Disability Insurance Scheme (NDIS) should avoid reverting to medical or diagnostic classifications for its participants. This classification framework must become accessible within the broader disability sector through consultation before being integrated into primary legislation governing the NDIS. Implementing such a participant categorization mechanism may have implications regarding Australia’s obligations outlined in UNCRPD.

Supports Tied To Impairment At Access Point

As previously noted, residents at PCC often face multiple and complex disabilities alongside barriers when accessing necessary supports. The existing structure where funding recognizes supports solely linked with each individual’s ‘primary’ impairment has been detrimental towards those living at PCC along with others experiencing overlapping challenges related to their condition(s). According to recommendations made during the review process concerning this matter [6], there was advocacy against maintaining that approach; instead suggesting recognition across all impairments affecting functional capacity would be preferable. However, recent amendments introduced via changes proposed under Section 34 Item Number Forty-Six imply only impairments identified initially upon entering the program will qualify for financial backing from the scheme itself—this change might negatively impact people residing at PCC who deal regularly with evolving physical conditions combined with psychological issues making them more susceptible over time toward worsening cognitive abilities too.

Only acknowledging initial diagnoses could result in unmet support requirements while creating obstacles preventing access further assistance needed later on due either new onset problems or progression of pre-existing ones.

Support Needs Assessment And Appeal Rights

The upcoming bill mandates assessments which haven’t occurred historically within NDIS context yet. Details surrounding what constitutes an ‘assessment’ remain undefined explicitly inside legislative text provided so far though they should undergo collaborative design efforts followed by testing phases before actual deployment occurs through rulemaking procedures established earlier mentioned legislation instruments. It’s essential however ensuring amendment provisions clarify expectations regarding quality standards and fundamental guiding principles behind conducting these evaluations since it directly affects how thoroughness level achieved throughout implementation phase looks like ultimately impacting effectiveness outcomes positively.

Moreover considering potential risks involved associated specifically with reassessing eligibility status particularly among vulnerable populations such as those found commonly amongst PCC residents—who frequently encounter traumatic events—and many have had prior negative encounters involving evaluation processes potentially resulting loss control decision-making power bodily autonomy—it becomes imperative that any development work undertaken around establishing assessment frameworks takes trauma-informed approaches seriously into account during planning stages ahead.

Clarification needs to happen concerning participant rights allowing appeals against decisions made following completion of their respective ‘support need’ analyses especially given current wording doesn’t clearly indicate availability options available internally externally challenging incorrect conclusions reached via said mechanisms under Section Ninety-Nine contained in the original Act governing operations related exclusively towards National Disability Insurance Scheme activities.

4.6.

NDIS access; and revocation of participant status

Access to the NDIS may be limited by Section 10 of the Bill. For example, a participant may meet disability or early intervention requirements, however if their required disability support needs are not listed in Section 10, they will not be eligible for NDIS supports. These subtle restrictions on NDIS access require close attention to ensure they do not exclude participants from the Scheme.

Further, Section 27 may limit access to the NDIS through the granting of powers to change eligibility criteria through the NDIS Rules. Section 27 states “The National Disability Insurance Scheme rules may make provision for determining any matter for the purposes of section 24 (disability requirements) or 25 (early intervention requirements)”

The Bill grants the NDIS CEO enhanced NDIS access revocation powers, under Section 30. This Section enables the CEO to revoke status if the participant does not respond to correspondence from, or provide requested information to, the NDIA within a 90-day timeframe, The PCC Alliance identifies that an unintended consequence that this amendment could significantly impact PCC residents, and lead to inappropriate revocation of participant status for this cohort. Many PCC residents cannot self-advocate or navigate complex systems. Many do not have access to a formal or informal advocate; and experience reduced literacy and limited or no access to communication methods (phone, email).

4.7.

Capacity building and budget-setting

Internationally, many countries introduced individualised, tailored support budgets as a cornerstone strategy to enable people to on from institutional care, including PCC settings [8][9][10]. The NDIS, through individualised and tailored support packages, currently provides the opportunity for capacity building to enable transition from PCC, and housing pathways to move on.

Under the changes sign-posted in the Bill, the support needs assessment score will directly inform plan budgets. The ‘method’ for translating the score into a budget will be determined by the Minister (Bill subclause 32K (2)). There is a risk that this ‘method’ will not result in personalised support packages. Defining features for this method should be detailed in the primary legislation. Without defining principles for this method elevated to the primary legislation, this process will not have full have parliamentary oversight, and we return to the issue of the method of budget-setting taking place in a ‘black-box’ i.e. utilising assessment scores in a manner that may not be fit for purpose, and lacks transparency, and capacity to genuinely inform an individualised budget.

5. A CLEAR VISION FOR THE FUTURE?

The evidence provided to the Disability Royal Commission 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 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.

Summary

The PCC Alliance expresses gratitude for the opportunity to contribute to the conversation on the future of the NDIS, and asks that all amendments are considered through the lens of their impact on Australia’s most marginalized disabled people, including people with psychosocial disability living in congregate care.

Private Congregate Care Alliance Submission 17 May 2024 7

REFERENCES

  1. 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
  2. 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
  3. 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
  4. PIAC Explainer on the ‘Getting the NDIS Back on Track’ Bill | Public Interest Advocacy Centre (piac.asn.au)
  5. O’Donovan, M-A., Demetriou, E., Whittle, E., Duke, Z., Aitken, T., & Guastella, A. (2021). Home and Living Options for People with Disabilities: A systematic review and environmental scan of strategies to support transition from group homes and congregate care, and those which prevent movement to congregate settings. Sydney: Centre for Disability Studies/The University of Sydney. Home and living options for people with disabilities (apo.org.au)
  6. Working together to deliver the NDIS | NDIS Review Supporting Analysis, p.299/
  7. Capability and Culture of the NDIA – Parliament of Australia (aph.gov.au)
  8. (NHS England » Personal health budgets for mental health)
  9. Benefits and challenges of a personal budget for people with mental health conditions or intellectual disability: A systematic review - PMC (nih.gov).
  10. Personal budgets and the pedagogical project of care institutions in Flanders: European Journal of Social Work: Vol 25, No 4 (tandfonline.com)
  11. (1) PCC Alliance submission to the Australian Government response to the DRC into Violence, Abuse, Neglect & Exploitation of People with Disability | LinkedIn
  12. National Housing and Homelessness Plan Issues Paper (dss.gov.au)
  13. 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

Private Congregate Care Alliance Submission 17 May 2024 8