The Power to Persuade editors, Sue Olney and Elroy Dearn originally published this article on their website The Power to Persuade on the 13th of May 2024. We have received their permission to repost it here. To read the original article, you can go here.

With the NDIS Amendments Bill 2024 open for submissions until the end of the week, today’s post, written by Muriel Cummins, critiques the potential impact of the Bill on some of the most marginalised NDIS recipients – people living in private supported boarding houses. Muriel raises concerns from her reading of the Bill and NDIS reform more generally, and the potential of these policy and legislative changes to further erode the rights of people living in these modern-day institutional settings.

Modern day institutions

Inside the day-to-day monotony of life inside Australia’s modern-day institutions, people continue to exist without a semblance of what most of us consider to be an ‘ordinary’ life. Routines are enforced, privacy is limited, and rights are not always respected. This may sound like a housing-relic of bygone years, but these institutions, called private congregate care (PCC) settings, exist Australia-wide. They house up to 80 people in a single residence. They are called Supported Residential Services (SRS) in Victoria. Collectively, it is estimated that PCC accommodate thousands of Australians with disability – around 80% of residents have a disability, and an estimated 30% are NDIS participants [1].

PCC settings are frequently last-resort options, and many people never leave. Research by Dearn 2023 indicates SRS lack core elements of home including security, stability, privacy. Residents in PCC 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 PCC [2].

The promise of the NDIS

The NDIS currently provides tailored, individualised support to people living with substantial disability. Many residents rely on the NDIS to provide a fighting chance of accessing a pathway out. International policy trends and research have demonstrated that a combination of capacity building and housing solutions provided through individualised funding packages, are key to a life beyond the walls of PCC settings [3].

Disability policy reform

The disability policy landscape that shapes the lives many residents, is poised on a precipice of monumental change, already at a breakneck pace. Both the Disability Royal Commission final report and NDIS Review final report, two landmark reports released in late 2023, are awaiting government response. Meanwhile – because why wait for an actually articulated, cohesive, shared vision for the future – the Commonwealth Government has begun the process of NDIS legislative reform. The NDIS Amendment Bill [4] was introduced to parliament on March 27th and is currently undergoing Senate Inquiry with public submissions open until May 17th 2024.

What does the NDIS Amendment Bill intend to do?

I’ve yet to meet anyone who believes the NDIS does not need reform, or the need for sustainability. It’s how we do this, while upholding hard-fought disability rights, that matters. The Bill intends to build foundational scaffolding for the future NDIS, and merits close examination. Would you build the foundations of your house without checking the integrity of the foundations? No? Well, let’s offer the NDIS the same degree of due diligence.

Let’s do a brief walk-through of some details contained in the Bill, and what they may mean for people living in PCC and what it indicates for access to those pivotal individualized funding packages that have potential to offer a pathway out of PCC – to that holy grail and ever-elusive ‘ordinary’ life that most of us non-disabled people have on tap.

What key changes does the NDIS Amendment Bill enable?

Firstly, the Bill takes a new approach to defining NDIS supports. The United Nations Convention on the Rights of Persons with Disabilities 2006 (UNCRPD), an international charter of disability rights to which Australia is a signatory, is partly reflected in the new definition of NDIS supports contained in the Bill. Firstly, while article 19a of the UNCRPD 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”,[5] only defined NDIS supports will be funded by the future NDIS – and it is not clear if it will include home and living supports for all groups of disabled people.

Secondly, the Bill would enable a new ‘classification’ system, classifying participants through yet-to-be disclosed criteria. People who live in PCC generally live with complex and overlapping disabilities, and many will not fit neatly into a ‘classification’ system. These classifications would likely pave the way for particular participant ‘pathways’, which could further define or narrow which supports participants could access. For example, many people with psychosocial disability will likely be funnelled through an ‘early intervention’ pathway. The NDIS Review description of ‘early intervention’ pathways, do not appear to include housing solutions, or tailored capacity building that may enable transition from a PCC setting. The Bill further declares that participants can only access supports for the impairments identified at the point of access to the NDIS  – not emerging or acquired disabilities, which are frequently experienced by people living in PCC.

Thirdly, the Bill introduces mandatory assessments to the NDIS, for the first time. All current participants will be re-assessed for eligibility for NDIS supports. There is as yet, no clear process by which to appeal an assessment [6]. The Bill would enable assessment scores to be fed into an algorithm to generate a budget – you may recall this approach was previously dubbed robo-planning [7]. Currently, advocates are calling for the assessment process and the ‘method’ for budget setting, be more established prior to changing the legislation.

Finally, the Bill grants the NDIS enhanced powers to remove people from the Scheme. The NDIA CEO can revoke participant status if the participant simply does not respond to correspondence from, or provide requested information to, the NDIA within a 90-day timeframe. This amendment could significantly impact PCC residents, as many have difficulty self-advocating and navigating complex systems. Many do not have access to family or a formal or informal advocate and have limited or no access to their own medical records, or communication methods including phone, or email.

To conclude, it is worth vehemently reiterating full support for making the NDIS great again.  However, the litmus test for disability policy changes is how they may impact the most marginalised groups of people living with disabilities. Let’s all take a sober look at this Bill in coming weeks, including what its implications may be for people living in PCC settings.

Muriel Cummins is an occupational therapist who is a key member of the private congregate care alliance and is passionate about creating a more equitable world

References

1. DRC 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, 02 September 2022, p.40

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. 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)

4. NDIS Amendment Bill. National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 – Parliament of Australia (aph.gov.au)

5. United Nations Convention on the Rights of Persons with Disabilities 2006

6. Explainer on the ‘Getting the NDIS Back on Track’ Bill | Public Interest Advocacy Centre (piac.asn.au)

7. ‘Robo-planning’ NDIS assessments would save government $700m | National disability insurance scheme | The Guardian