Recommendations to reboot the NDIS have finally been released. 5 experts react

Findings from an extensive review of the National Disability Insurance Scheme (NDIS) have been released with ideas on how to transform it. Led by co-chairs Bruce Bonyhady and Lisa Paul, the review heard from around 10,000 people before making 26 recommendations with 139 supporting actions. Presenting their findings, co-chairs wrote:

We must return to the principle that NDIS eligibility is based first and foremost on functional impairment rather than medical diagnosis.

The review identified challenges including greater than expected growth and unclear criteria for reasonable and necessary supports, “which create complexity, stress, inconsistency and mistrust”.

Key recommendations include:

-- National Cabinet to jointly design and fund foundational disability support outside the NDIS
-- navigators to help participants get the services they need
-- providers to be registered and compliant with new standards
-- needs assessments to gauge the impact of disability rather than lists of diagnoses for access
-- more consistent housing supports for people with disability
-- disability support access for older Australians.
The recommendations follow yesterday’s National Cabinet cost-sharing deal and take in findings from the disability royal commission. The government says it will announce reforms based on the recommendations in 2024. It hopes to constrain annual NDIS growth to 8% by 2026.

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Read more: States agree to do more heavy lifting on disability, in exchange for extra health and GST funding

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We asked five experts for their initial reaction to the recommendations:

Mark Brown – social researcher

The NDIS review found while the scheme has transformed the lives of thousands of people with disability, it is not efficient or fair. Design flaws in the way the scheme operates mean the NDIS is on its way to being the most expensive disability system in the world.

The idea that disability supports are an ecosystem, and that multiple governments, departments, service sectors, and communities must share responsibility reflects the reality that people with disability are diverse and live in the real world, with all its complexities.

There will be some fears the review panel is recommending a more complicated and confusing system. People with the most complex needs may rightly wonder whether they will fall through the cracks in the interfaces between systems. (Unclear responsibilities have been a major cause of young people becoming needlessly stranded in aged care.) But the current approach, which relies almost solely on individualised funding, has proven to be very complicated in practice.

The panel’s recommendations seem like a reasonable framework for change, but they aren’t a precise blueprint. The effect on people with disability, families, and support workers will depend on the detail and implementation. There are still many difficult conversations to have.

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Read more: What the NDIS needs to do to rebuild trust, in the words of the people who use it

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Anne Kavanagh – disability and health

The NDIS review offers a new vision on how to move to a sustainable NDIS that will serve Australians into the future. The establishment of a new Disability Intergovernmental Agreement to provide supports within the NDIS and outside it is welcome. Many people with disability not on the NDIS are missing out on essential supports.

The establishment of national councils and committees to enable people with disability to advise government and people with disability and other experts to monitor performance and assess evidence should lead to greater accountability and access to better quality support.

After ten years we would expect an evidence base on what works. The proposed Disability Research and Evaluation fund must be adequately resourced to address this evidence gap and implement innovative practice.

The focus on the regulation of unregistered providers will be of concern to many people with disability. This has been the way many of us have been able to access the supports we want. It needs to be remembered regulation does not equate to safety. We have seen many registered providers who have perpetrated abuse and neglect on people with disability.

I welcome the increased flexibility in relation home and living supports but it will be important to make sure the requirement to share home and living supports with two other people does not continue the segregated living environments we have been fighting to prevent for so long. Instead I hope this flexibility enables people with disability to make real choices around who they live with and where.

Ensuring people with disability are part of community, often facilitated by independent support workers, provides natural safeguarding against abuse and neglect.

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Read more: NDIS cost scrutiny is intensifying again – the past shows this can harm health and wellbeing for people with disability

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Libby Callaway – rehabilitation, ageing and independent living

There is general agreement the NDIS has become the “oasis in the desert” of disability services.

The NDIS review final report recommends a strong focus on strengthening other mainstream systems or “foundational supports” – like the early childhood, education and health systems – for all people with disability. This is encouraging but it will be important to monitor how the funding agreements negotiated via National Cabinet actually deliver enhanced services for people with disability and their families.

Past redirection of disability funding into the NDIS has left large service gaps. People of all ages and abilities lost programs that benefited them, such as state-based aids and equipment libraries or independent living centres. To address this, the NDIS review highlights the need to increase information and capacity building supports across key areas, including assistive technology and housing options.

It will be important to understand more about the vision for “preferred provider” arrangements referred to in the report. The review makes it clear reforms should be implemented in a staged process over five years. Further engagement and co-design with people with disability and their families will be vital to this.

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Read more: Government plans to use NDIS purchasing power to help save billions – but they shouldn't put products before people

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- David Trembath – autism and public health

The review has a lot to say about supports for the 20% of Australian children with developmental differences, delay, and disability. It recommends bolstering mainstream services and supports, such as inclusive childcare. That means the majority of these children could have their needs met outside the NDIS in the coming years. This seems like a sensible approach – meeting children and families where they are at and building more inclusive communities. It will require substantial investment, a big shift in thinking, and a strong focus on community-driven solutions.

Funding for individual supports will still be available, but the review recommends access be determined through a more rigorous assessment of children’s functional needs, not simply diagnoses. The focus is on supports for children with the most complex disability needs. Removing the link between diagnosis and access should return attention to what is most important for planning – children’s functional strengths and support needs. It should reduce the challenges many parents face in accessing timely, affordable and appropriate assessment.

Overall, the recommendations are a step in the right direction, provided children and families are at the centre of every decision and change that affects them.

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Read more: New national autism guideline will finally give families a roadmap for therapy decisions

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Scott Avery – Indigenous disability research

The barometer for judging the NDIS review is the extent to which it advances a vision for a disability services sector that is anti-ableist and anti-racist, and accommodates a First Nations culture inclusive of people with disability in both word and action.

There is one overarching recommendation that is specific to First Nations people with disability which is for the establishment of an alternative commissioning process to be created in partnership with First Nations representatives, communities, participants and relevant government agencies. This can be read alongside the recommendations of the disability royal commission to make the NDIS more inclusive of First Nations decision-making in its governance and leadership.

What is understated in this report and others is the extent of the organisational change the NDIS and other organisations in the disability sector need to own to give meaningful effect to the dream of an authentically inclusive scheme.

First Nations people with disability have been lending their wisdom and voice to one inquiry or another for what has seemed like a generation. Each inquiry has delved deeply into the trauma stories from our community, but at the same time has placed decision-making on implementation into a holding pattern. Disability community leadership and self-determination seems to be the consensus recommendation both the NDIS review and the disability royal commission have landed on. Can we now just get on with it please?

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Read more: Indigenous people with disability have a double disadvantage and the NDIS can't handle that

-------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- Mark Brown is an Honorary Research Fellow at La Trobe University and a Senior Research Fellow at the Summer Foundation. He is also an NDIS participant.

Anne Kavanagh receives funding from NHMRC, ARC, MRFF and the Commonwealth government,

David Trembath receives research funding from Autism CRC for research focused on assessing children's functional strengths and support needs, as well as from the Commonwealth Department of Health, Medical Research Future Fund, and Playgroup NSW Inc. His position at Griffith University is co-funded by CliniKids, Telethon Kids Institute. David has family members who access the NDIS.

Libby Callaway receives funding from the Commonwealth Government Department of Health and Ageing and Australian Housing and Urban Research Institute. She is the voluntary President of the Australian Rehabilitation and Assistive Technology Association and a voluntary Board Member of the Homer Hack.

Scott Avery is a profoundly deaf Aboriginal educator and researcher from the Worimi people. This commentary are provide in am independent capacity and are not intended to represent the views of any other person or organisation in any official capacity. Dr Scott Avery receives research funding from the First Peoples Disability Network under the First Nations Disability Sector Strengthening initiative under the National Agreement for Closing the Gap, that is administered by the National Indigenous Insurance Agency. He is a member of the First Nations Advisory Group of the National Disability Insurance Agency. He is a Director on the Board of disability service provider Achieve Australia.