NDIS Quality and Safeguarding Commission
Mandatory registration of Supported Independent Living Providers
Down Syndrome Australia
7 March 2025
Down Syndrome Australia (DSA) supports mandatory registration of Supported Independent Living (SIL) providers. It is vital that SIL providers are not only registered with the NDIS Quality & Safety Commission (the Commission), but that they are also required to meet quality, safety and human rights standards, and that those are monitored and enforced. DSA advocates for inclusion and for services and support to align with a human rights model of disability, informed by the Convention on the Rights of Persons with Disabilities (CRPD).
Many people with Down Syndrome live in congregate housing operated by service providers. By way of example, 2,131 adults with Down syndrome are in SIL, which represents 27% of NDIS participants with Down syndrome.1 Housing and support arrangements can vary from institutional group homes, so called “SIL homes” in which one provider manages the housing and supports, or in an ILO arrangement which can include a person without disability providing informal support.
As mentioned in the consultation paper, multiple reviews and inquiries have discussed the poor quality of supports and risks to safety and wellbeing that are present in segregated, congregate disability housing. These inquires highlight abuse, neglect and exploitation that have occurred in these settings, as well as isolation, lack of autonomy and choice, and poor quality care.2 We know these risks increase if the resident has Down syndrome or intellectual disability and has limited or no family support.
1 NDIA (2023). Down syndrome summary, Annual dashboard report, June. 2 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023) Final Report - Volume 7, Inclusive education, employment and housing, September, ISBN 978-0-6457941-9-9.
In addition to SIL provider registration, we believe the Commission must undertake additional reforms to ensure human rights are upheld in housing and support:
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Accessible outreach and information to residents of congregate housing The Commission must support people with Down syndrome to understand their rights and that they have choice and control in their housing and support arrangements. Some people living in congregate settings are socially isolated and may have limited or no support from family or other informal supports. For these people, which includes people with Down syndrome, they may be unaware of their rights and the standards of housing and support they are entitled to. The Commission must produce accessible resources to inform residents of their rights, what a provider is responsible for, how to make a complaint, and who to go to for support. These resources must not only be accessible, including in Easy Read and video format, but also must be proactively provided to residents through multiple community touchpoints to ensure people living in congregate settings are informed and supported.
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Improving standards and increasing oversight in congregate settings In addition to registration, SIL providers should be required to uphold standards of quality, safety, human rights and supported decision-making in their services. In the discussion paper “Next steps – regulation for in home and housing supports”3, the Commission sought feedback on new NDIS Practice Standards for NDIS providers delivering in-home supports in a group arrangement. These Practice Standards must consider the specific needs of people with Down syndrome, including supporting inclusion and meaningfully building in supported decision-making processes for residents of congregate housing. This could include training for support workers on practical steps to implementing supported decision-making with residents, and how to include family in supported decision-making processes. In order for these new standards to effectively address violence, abuse, neglect and exploitation that we know occurs in congregate settings, there must also be a commitment to monitoring, oversight and quickly addressing providers who do not adhere to the standards.
3 NDIS Quality and Safeguards Commission (2024) Next steps – regulation for in home and housing supports, Discussion paper, August.
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Enshrining separation of housing and support When housing and support within a home is provided by the same service provider, it is not only replicating an institutional group homes arrangement, but also a significant risk to resident choice, control and autonomy. The Disability Royal Commission highlighted that it is a risk factor for violence, abuse and exploitation because in these settings, residents feel they are unable to complain about unsafe or inappropriate situations for fear that they may lose their housing. Down Syndrome Australia supports the Commission’s commitment to addressing the separation of housing and support as part of their ongoing reform program. However, currently all proposed reforms do not capture participants receiving SIL and living in non-SDA homes, which must be addressed. This is a growing housing and support arrangement and a risk to participants and must not be allowed to continue without additional regulation and oversight.
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Nationally coordinated visitor program A useful tool to ensure service providers and support staff uphold standards of quality and safety is a visitor program in which a trained person visits congregate housing for people with disability unannounced. They inspect the home, review required documentation and speak to residents to discuss concerns. There are many existing models of this program including the Victorian Public Advocate Community Visitor Program4 that could be replicated at a national level.
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Increase tenancy and occupancy protections for people with disability As recommended by the Disability Royal Commission (Recommendation 7.37), the tenancy and occupancy legislation and regulation must be reformed to ensure people with disability have assurance that their housing is secure and their rights will be protected5 in SIL arrangements. This will ensure security and safety even if a complaint or disagreement is ongoing with the housing or support provider. These tenancy agreements should also include commitments to meaningfully employ supported-decision making to enable residents to make choices about their how their home is run, their routine, the residents and staff and resolving complaints.
4 Victorian Public Advocate (2025), Community Visitor Program, Community Visitors - Office of the Public Advocate 5 Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disability (2023) Inclusive education, employment and housing Final Report: Volume 7.
About the Down Syndrome Australia Consortium
Down Syndrome Australia (DSA) was established in 2011 as the national peak body for people with Down syndrome and their families in Australia. Our vision is an inclusive society where people with Down syndrome have full participation and equal enjoyment of all human rights.
Down Syndrome Australia is one of eleven National Disability Representative Organisations (DRO) and leads a consortium of organisations to represent people with intellectual disability and their families and supporters, with a focus on intellectual disability caused by chromosomal variations.
People with these chromosomal variations experience intellectual disability varying from mild to severe, often accompanied by degrees of physical disabilities, higher rate of co-occurring neurodevelopmental conditions, communication disabilities and health issues.
It is important that the views of people with chromosomal variations and their families and supporters are represented in the development of policies and services that affect their lives.
For people with these chromosomal variations, their families and supporters play a significant role in their lives from advocacy to skill development and providing supports and care. They are a critical part of the lives of a person with intellectual disability and form an important part of our advocacy work.
All our work is within the human rights model of disability and informed by the Convention on the Rights of Persons with Disabilities (CRPD).
Our consortium members are:
- Down Syndrome Australia and its member organisations - ACT Down
Syndrome and Intellectual Disability, Down Syndrome Queensland, Down
Syndrome Tasmania, Down Syndrome Victoria and Down Syndrome
Western Australia
- Angelman Syndrome Association Australia
- Australian X and Y Spectrum Support
- Cri du Chat Support Group
- Fragile X Association of Australia
- Prader-Willi Syndrome Australia
- Smith-Magenis Syndrome Australia
- Turner Syndrome Association of Australia People with intellectual disability with a focus on chromosomal variations
Across the DSA consortium, there are an estimated 20,000 people in Australia with these chromosomal variations receiving support, information and advice, of which Down syndrome is the most common.
Our Work
Down Syndrome Australia is also recognised as a Disability Representative and Carer Organisation (DRCO), working with the NDIS.
Many of our Consortium members deliver a range of Information, Linkages and Capacity Building (ILC) grants and other projects across the country. These projects span information, programs, services and other forms of community supports for people with disability, their families and supporters – including medical professionals and carers.
We ensure people with disability are at the heart of our work, utilising best practice principles such as genuine co-design and co-delivery across our projects, and supporting the community with accessible information. We have been internationally recognised for our commitment to organisational inclusion – actively involving people with disability across our organisations: within the board, advisory network, ambassadors and project staff.
For more information contact:
Darryl Steff
Chief Executive Officer
Down Syndrome Australia
Email: Darryl.Steff@downsyndrome.org.au
Website: www.downsyndrome.org.au
@ 1300 344 954 © info@downsyndrome.org.au