Submission regarding the “National Disability Insurance Scheme Amendment (Getting

the NDIS Back on Track No. 1) Bill 2024”

To whom it may concern

I am making this submission as part of the Government’s proposed National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (NDIS Bill 2024).

I am a Disability Advocate and for the last 4.5 years I have been mostly supporting families of children with Autism Spectrum Disorder who have profound and extensive delays and support needs. I have supported approximately 200 families with their NDIS applications, plan reviews and NDIS appeals.

Context and current issues with NDIS plan reviews and appeals

For every single family I have supported, there is a consistent pattern with their NDIS experience and journey. That experience has been, no matter what the families share with NDIS, no matter how many different professional reports and support letters the family have, or what their child’s lived experience is and what capacity building supports have been tried and what supports have not worked, none of this matters or is reflected in any of the NDIS plan review decisions I have seen. Participants NDIS plans are random, they include services not requested, are not based on the evidence presented, or what has been recommended by treating professionals and are not reflective of the views of the family who know what is best for their child.

Every time I have spoken to a family after they received their child’s NDIS plan, they feel deflated, h unheard and extremely stressed about how they can provide the intervention and therapy that has been recommended and they can see is significantly benefiting their child.

The cohort of children I work with have profound functional delays and behavioural barriers. Every one of them has previously tried less intensive or other modes of Allied Health or mainstream support, and made limited to no progress. Once these children begin receiving an intensive level of 1:1 specialised support, families see developmental progress instantly which is the basis for them seeking an intensive level of funding from NDIS. This intensive level of founding is not being requested for the long term, for most of the families I work with, these families are trying to maximise their child’s development and functional capacity in their early intervention years, where the neuroplasticity of the brain is more flexible and able to develop skills and adapt at an optimal rate, as well as before they start school and have limited time to engage in intensive support services. Unfortunately in my experience, no amount of evidence results in NDIS funding the recommended therapy for these early intervention children.

Time and time again, families are told by NDIS staff to just send their child to kindergarten or care and they will learn while around other children. Families of severely disabled or autistic children would love for their child to attend mainstream services like the majority of children their age. If their child could safely attend these mainstream settings and grow developmentally, they would send their child. Many have tried childcare and many have had to withdraw or been asked to leave due to safety concerns and limited staff capacity. No family puts their child in an intensive level of therapy unless they have to. To continuously suggest this shows

Page Text

the lack of knowledge of NDIS staff, as well as their complacency in pushing other avenues so as to not fund what is being requested or recommended.

The failure of the NDIS planning process is unfairly forcing many families into lengthy review and appeal processes, which almost always leads to lengthy legal battles at the Administrative Appeals Tribunal (AAT), up against a team of top end lawyers while the vast majority of these families are not legally represented. Even more alarming, in my years of experience supporting families, many AAT cases result in NDIS agreeing to a significantly higher amount of support, meaning their original planning decision were wrong.

This experience is not unique to children with autism, I am regularly engaged with many advocacy groups and disability forums and people with a disability across the board are highlighting that their NDIS plans are not being aligned to professional recommendation or what people with a disability are advocating that they need (which are key principles of the NDIS legislation). For many this can risk their health and welfare or be life and death.

NDIS Bill 2024 proposals

As many NDIA staff are already making poor planning decisions and participants are not getting funding for recommended supports, the following proposals in the NDIS Bill 2024 relating to Restrictions on plan management and flexible spending are of grave concern. This bill is proposing to

• stop participants seeking an early plan review/change of circumstance review when their funding runs out before the plan end date.
  • As most NDIS plans are often inaccurate and not aligned to professional recommendation, this change would mean that participants must make a difficult choice as to whether they access a recommended support or not, as there is no option to seek an early review if funding runs out. Given the months it takes to do s100 reviews and AAT appeals, there is amongst no chance of getting funding within the next 12 months.
• restrict the amount of funding to be released in increments (i.e monthly) so that participants don’t “overspend” before the plan end date.
  • If the plan is inaccurate/not enough from the start, this could mean participants would run out each month, risking access to any disability supports and not giving them time to do a review or appeal
• use “Stated Supports” to prescribe what supports a participant can use funding on.
  • This limits plan flexibility and participants choice and control to access an alternative support, which is the foundation and spirit of the NDIS formation.

Here is a real life example that I hear weekly.

A child has level 3 Autism. They are mostly non verbal, with behaviour regulation difficulties, to interact or socialise with peers. The parents have tried childcare, Speech Pathology and OT for 12 months and their child has made difficulties, having to pick them up early. They look into other options and speak to their Paediatrician who recommends accessing evidenced based behaviour therapy/ABA of 20-30 hours per week. The apply for a change of circumstance review and find a spot with a local ABA provider.

However, even with recommendation letters and advising the NDIS of their child’s lived experience of other services, the NDIS funds 2 hours a week as stated support for OT and Speech Pathology and they are told the childcare should be able to help them. When the parents ask for information on how NDIS determined this plan as opposed to the professional recommendations, they are given only a high level and very vague explanation stating it is not reasonable and necessary according to section s34(1) of the NDIS Act. They have no idea what to do now. If this family starts the ABA therapy on professional recommendations, they will run out almost immediately and cannot get more funding. If funding is restricted to monthly instalments, they run out every month, making accessing any support unlikely. If there are consequences for not spending on a “stated support” they will never be able to have choice and control and flexibility to try different disability supports. How will this Bill and these radical restrictions improve a person’s quality of life? These restrictions are completely opposite to all 5 key principles of the Participant Service Charter

Transparent We will make it easy to access and understand our information and decisions. Responsive We will respond to your individual needs and circumstances. Respectful We will recognise your individual experience and acknowledge you are an expert in your own life. Empowering We will make it easy to access and use information and be supported by the NDIS to lead your life. Connected We will support you to access the services and supports you need.

While I can appreciate that there’s likely been some incidents of misspending NDIS funding over the years, it is vital that NDIS stop treating all people with a disability and their cares like they are criminals who are using NDIS funding for luxury items. This Bill will just embed this controlling, suspicious and apathetic culture further.

As recommended by the NDIS review report, restrictions to plans and participants’ choices should be the last resort. I implore the Government that if there is going to be a mechanism to restrict early plan reviews or implement limited increments, that there are clear and tight rules about applying these restrictions, so it does not become the standard. These restrictions should only be implemented when significant misspending has been proven. If a participant has sought an s100 plan review or appealed their plan, if they have professional recommendations that support more funding/services and can produce invoices or receipts for what the funding has been spent on (and these are supports or services the NDIS does fund) then no restrictions should be put in place. These restrictions will lead to significant mental,

Needs assessment The introduction of a needs assessment with no clear guidance on who will conduct these assessments and what tools will be used to determine these assessments, sounds very familiar to the “independent assessments” proposed by the previous Liberal Government, in which the current NDIS Minister, Bill Shorten, strongly opposed.

Why should a person with a disability constantly be assessed by random strangers to justify their support needs? This is inhumane. Most people with a disability will have a range of qualified professionals in the field who know them and have worked with them and likely to have done assessment, and can already make recommendations regarding their disability support needs. This is duplicating assessments and work that has already been done. It is also giving NDIS staff, who already have a superiority complex, more power and a belief that their processes and assessment are above those qualified in the field. If assessments are too rigid and prescriptive, with a foundation that disabilities needs are the same for every individual with a particular disability, it will continue to lead to poor planning outcomes. No one disability is the same, people’s circumstances and support needs are not static, and no standard funding package will meet the needs of all.

In addition, a ‘needs assessment’ would not be a ‘reviewable decision’ under section 99 of the NDIS Act and if this is implemented it cannot be reviewed through internal or external review. This means the Bill does not provide a way for a participant to challenge an inappropriate needs assessment at s100 or the AAT – and therefore no ability to prevent an inadequate budget being set based on that needs assessment. Further, the Bill does not currently ensure a participant has the opportunity to see the needs assessment report before it is given to the CEO. Again, this sounds very familiar to the proposals of the previous Liberal Government to implement ‘independent assessments’ without the ability for participants to view and agree to what these assessments have said.

This bill cannot be supported. I implore the Government to do further and wider consultation with the disability community, carers and disability services and advocates.

As a long term supporter and advocate of you Bill Shorten, I am deeply disappointed in you personally. I believed that you really cared about the people and wanted to put people with a disability before budgets, cost cuts and media friendly statements about staying out of the red.

Regards

Krystle Edmonds NDIS and Disability Advocate