Submission to the Senate Joint Standing Committee into the NDIS

Debbie Wellington & Stuart Matthews

27 October 2022

With specific reference to Terms of Reference (a) and (b), we would like to submit to the Senate Joint Standing Committee into the NDIS our experience of attempting to work with the NDIA to secure funding for our son’s post-school options.

Some background information about our boy. redacted is now 19 years old. He was diagnosed with West Syndrome (Infantile Spasms) when he was 7 months old. He has Autism Spectrum Disorder (Level 3 as classified under the DSM-5), Intellectual Disability (Severe as classified under the DSM-5) and Epilepsy. He lives at home with us, his parents, where we provide his care. He requires 1:1 supervision 24 hours a day, 7 days a week.redacted has a history of complex behavioural issues including violent outbursts resulting in harm to self, others and property damage.redacted does not read or write. He is effectively non-verbal. His ASD and ID are permanent; he will not “get better”, he will not improve and he will need specialised care for the rest of his life.

redacted has been an NDIS participant since 2014.

At the end of 2020, we were focussed on two important goals for redacted in 2021. The first was successful transition from Modbury Special School to a Day Options program at the end of 2021. The second was to put in place a transition program from the family home to supported accommodation, slowly working toward this outcome over the following 2-3 years.

To this end, we initiated an early Plan Review for redacted with the NDIA in September 2020 to request increased Core funding in order to support redacteds goals. The Plan Review was approved in November 2020 and Plan Review meeting conducted in January 2021. The meeting went well and the LAC indicated redacted new plan would be built taking into account these two important life changes for

In February 2021, without any further consultation, a new plan was approved. To our distress, not only were none of redacteds goals taken into consideration, his previous level of funding was cut by $10,000. We were further distressed on receiving a copy of the new plan:

• The plan made no mention of the goals discussed during the Plan Review meeting. In fact, it listed goals set two years before in 2019.
• Behaviour Support funding had been deleted, despite an Interim Positive Behaviour Support Plan being in place.
• Under Core Supports, respite funding was allocated at a ratio of 1:3 when the quotes provided by our service providers specify a ratio of 1:1.
• Under Capacity Building Supports, redacted was incorrectly referred to as “Ryan”.

• Under Core Supports and Capacity Building Supports, funds had been allocated to assistive technology. At no time during the Plan Review meeting did we discuss or request funding for AT. None of the reports from our service providers addressed AT.
• Under Capacity Building Supports, funding was allocated for Psychology and a Therapy Assistant. Neither of these services were requested or discussed during the Plan Review meeting.

Clearly, the plan issued was not intended for at all. It was obvious he had been mixed up with another participant.

We reported this to our NDIS partner representative, Baptcare. They assisted us to initiate an S100 Internal Plan Review which was submitted in March 2021.

In May 2021 we were contacted by a representative of the NDIA Internal Review team. She spoke to me in a brief telephone call about the extra supports we were seeking for I was unaware at the time that this telephone call constituted the Internal Plan Review. The following day we received a letter, rejecting our request for additional funding. It was clear from the decision letter that the vast number of documents provided to the NDIA over the years confirming level of disability had not been taken into consideration when making this decision.

The decision letter was distressing on so many levels. It stated “At this stage, its not clear that a day program may be the best option for Options such as study, supported employment or a combination of these options can be explored.” We were at loss to understand how was expected to undertake supported employment or further study when he cannot read or write and operates at the developmental level of a toddler. Moreover, it noted that “A Local Area Co- ordinator or Support Co-ordinator may be able to help you to consider alternative ways of achieving the outcomes you requested, such as connecting with community or government programs.” We met with our LAC to discuss this statement. Baptcare confirmed there were no community or government programs available to support His level of disability is such that he requires specialised care from trained providers.

Having started this process in September 2020, we were heading toward crisis point with due to leave school at the end of 2021 and transition visits to Day Options providers due to commence in Term 3, 2021.

We made further approaches to the NDIA, desperately trying to make contact with someone who would see sense and assist us. The overriding message from the Agency was that there was nothing they could do and we would need to apply to the Administrative Appeals Tribunal (AAT) if we wanted to take the matter further. The tone used by the Agency was bullying with statements such as “We could organise for a new Plan Review but there’s no guarantee of a better outcome and you might even end up worse off. Then you would have to go through the S100 Review process all over again and that could take another 6-12 months”. The Agency were fully aware this was not an option for us, given was scheduled to leave school in December 2021 and the funding situation needed to be resolved as a matter of urgency.

We found it inconceivable the best the Agency could offer, after clearly issuing with another participants plan, was essentially a threat that we could have to go through the whole process again, after the stress and anxiety we had been through trying to sort the issue out thus far.

In light of this, reluctantly, we lodged an application with the AAT in June 2021. We provided a Functional Capacity Assessment, a letter from school principal and an updated letter from his

Page 3

psychiatrist as evidence, along with other supporting documents already available to the NDIA via the portal.

We did not choose to go down this path; the Agency essentially left us with no option.

Shortly before submitting an application to the AAT, we also contacted our local Member of Parliament, Hon Steve Georganas MP, who sent a letter to the then Federal Minister for the NDIS on our behalf.

In response to Mr Georganas’ advocacy, approximately two weeks later we received a phone call from a representative of the NDIA National Complaints team. She indicated we had received incorrect advice from the Agency; that our case should have been resolved internally, however, given we had now submitted an application to the AAT, the Agency were unable to intervene in the matter.

In July 2021, less than 24 hours before the first AAT case conference, the same representative of the NDIA National Complaints team telephoned us again. She suggested we might like to consider withdrawing from the AAT case conference the following day and instead, undertake an S48 Change of Circumstances review with the Agency. Again, this offer came with no guarantee of a satisfactory outcome or an indication of how long the process would take. We expressed our disgust that the Agency would contact us less than 24 hours before the AAT case conference, offering an option they knew very well was unsuitable given the urgency around resolving this issue before left school at the end of the year.

The first AAT case conference occurred the following day with the two of us, facing a Minter Ellison lawyer (representing the NDIA), along with an Assistant Director from the NDIA’s AAT Case Management Branch. At the conclusion of the case conference we were left with a “Statement of Issues” the Agency required us to address. The majority of the information requested had been previously provided to the Agency over the years in multiple reports by service providers and health care professionals. This was nothing more than a hoop jumping exercise as we believe by this point, The Agency realised it had made a mistake by forcing our case to AAT.

Shortly after the first AAT case conference, we were incredibly fortunate to have the Legal Services Commission appoint a solicitor to assist us with the process. The LSC solicitor took over responsibility of liaising with the NDIA’s solicitor on our behalf. As a result, the day before the second AAT case conference was scheduled, the NDIA’s solicitor contacted the LSC solicitor with an offer. Although the offer did not address the inadequacies in plan as a whole, it did provide funding for him to commence Day Options in 2022 and an increase to his respite funding in preparation for supported living. The LSC solicitor assisting us wanted to completely review plan as part of the AAT process, setting him up with a suitable plan to move into adulthood given he had turned 18. Unfortunately, the NDIA’s solicitor refused to consider this and recommended we request a Change of Circumstances review to look at plan as a whole, after completion of the AAT appeal.

The AAT issued orders for the NDIA to implement in September 2021. The next challenge was getting the Agency to issue the AAT orders correctly. The Assistant Director from the NDIA’s AAT Case Management Team, who had attended the initial case conference, was responsible for this. She made so many errors with calculating funding that the new plan had to be issued three times. At one point she refused to discuss the errors with us or correct them and only did so once we asked the LSC solicitor make the request via the NDIA’s solicitor.

3

Although we can now breathe easier knowing we are in a better situation, there are still hoops to jump through to have a satisfactory plan issued for moving forward into adulthood.

The thought of having to deal with the Agency again makes us feel us physically sick, knowing how dysfunctional and unprofessional they are.

We are appalled that it took an MP, two solicitors, AAT Order and a year of stress to sort out the mess the Agency made with plan. Not a day goes by when we don’t worry about what will happen to when we are no longer here to take care of him. He has no siblings and no extended family to look out for him. Our experience with the NDIA has only served to compound this worry. If we struggle to secure the supports he needs while we are here to advocate for how will he survive when we are no longer here? He is completely vulnerable, unable to make decisions for himself and we live in fear of his fate at the hands of the NDIA.

No family of a vulnerable person should have to go through what we did in trying to secure supports for our boy. The NDIA bullied, threatened and treated us like criminals for trying to advocate for No doubt we will have to go through this whole humiliating experience again when it comes to securing SIL and SDA funding for

Something needs to change to give people with severe disability and their families their dignity back and the life they deserve.

Thank you for the opportunity to share our story.

Kind regards

D Y Wellington & S E Matthews Debbie Wellington and Stuart Matthews