Submission by to the Community

Affairs Legislation Committee for Inquiry Regarding National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 [Provisions]

Personal Background

A snapshot of me and an explanation at to why I have the credibility to speak on this issue.

Married for over 20 years.
Father of seven children
Six of my children have formally diagnosed disabilities (cognitive, communication, mental health, speech disorders, ASD)
Former primary school teacher (specialist trained in the 1990s for ‘special schools’) with substantive roles as teacher, assistant principal and principal.
Homeschooling my own children due to systemic failures they experienced with the NSW public school system
Registered specialist positive behaviour practitioner with the NDIS Quality and Safeguards Commission
Director of a NDIS registered provider

                                   ndis

married for 7 children 6 with former special homeschooler Registered with 20 years disabilities education NDIS QSC teacher and Registered provider

Executive Summary of Submission

The initial purposes of the NDIS are still sound and relevant however they have been eroded by politicians and leaders who have failed to understand the principles that founded the scheme along with the intergovernmental agreements what work alongside the NDIS. This has allowed a culture to form at the Agency that: fosters opacity; lacks accountability; rewards mediocrity and rejects scrutiny while undermining its own operational guidelines, procedures, processes and code of conduct without conviction. Internal operational systems that once were reliable and predictable have been removed and the final result of these failures have been to erode the community’s confidence to the point where the scheme founded on “insurance principles” is to be redesigned into an adhoc “welfare scheme” that will not be fit for purpose. The way to “get the NDIS back on track” is not to change the scheme but to run the scheme properly, just as it was designed by creating a culture based on transparency, collaboration and respect.

Introduction

When my now sixteen year old son was put onto the NDIS we were told he was “the first person in the Illawarra” to enter the scheme and so much has changed in the years that we have been on the scheme. While we are so grateful to the Australian government and its people who have helped him and our family, I note that so much has changed as the scheme has grown and matured and not all of it is positive.

This submission will, in broad terms, reflect on my anecdotal observations to then recommend ways that I believe will assist the committee to “bring the NDIS back on track” without the need to dismantle or redesign the scheme (which in itself will be costly). My aim, using a crude metaphor, is to “service the vehicle and retune the engine” as opposed to “scrapping the vehicle altogether to then only use public transport.”

Communication and Information Frustrations

One of the most frustrating parts of the Scheme is accessing accurate communication in a timely fashion. I personally have already spent over twenty hours trying to access a simple answer to a question (that is answered in the NDIA’s own operational guidelines) that if I had been transferred to the “right department” at the beginning would have solved the issue in less than one minute. I was directed to send emails with attachments outlining my scenario and question time and time again. I followed things up with six or seven phone calls only to be told after many months, that it was in the process of being determined. At one stage I even educated the operator on what the operational guidelines were and what they stated, for the operator to reply that he was new and had not read the document I referred to. Eventually after five months of waiting and following up my request, I received an answer (from a general clerk working in the general enquiry department when I had been assured it had been escalated to an approval committee of some sort) that showed my emails had not even be read correctly and the clerk had not read my attached documents, had not accessed my son’s plan and was unable to put several simple key pieces of information together to come to a decision based on all of my evidence showing it should approved with ease. I was told that my request was not approved (against all of my provided evidence and the Agency’s own operational guidelines) and so I gave up. It was simply impossible to physically speak with a staff member in the correct department, even after my repeated requests in writing that they CALL ME and not email! So in the end I gave up and my son has gone without a vital need that is approved and budgeted in his plan.

I put it to you that if an articulate highly educated person who can advocate with strength is frustrated most of the time, how on earth will a vulnerable person with a disability have access to a fair and equitable process?

I have not only my own experiences but so many stories from others who have also found it highly challenging to get pertinent and honest answers to even some of the most benign questions and often answers will vary greatly based on the operator’s level of experience and expertise. I was told by one support co-ordinator who advised me to

keep calling the number until I get the answer that suits my needs as the answer vary to such a great degree! This is just not how the NDIS was designed to be run.

Broader Context Over the years we have all seen disability services run by The States become rundown or dismantled so that the federal government’s NDIS can provide needed services. This is a result of the broader issue that the National Disability Strategy has been set aside by most stakeholders and this has made Bill Shorten and his staff “the patsy.” While I sympathise with the federal government, the answer is not demonising or undermining the integrity and credibility of all scheme participants. I am dismayed to see the constant references to mismanagement of participants (that is accessing sex workers, overseas cruises, fund mismanagement and the like) when the vast majority are excellent stewards of funding who are not only grateful but are highly anxious that any foot ‘put wrong’ will result in expulsion from the Scheme.

While mismanagement is unacceptable, (where the Agency will do the right thing and deal with these cases as they arise) please don’t seek to damage the reputation of the Scheme and its participants by focussing on the few ‘bad apples’ in the barrel.

Furthermore, for the NDIS to improve its long-term viability surely the federal government needs to bring back all key stakeholders to reinvigorate the NDS. This alone will improve the performance of the NDIS while also improving outcomes for not only people with disabilities, but for the community as a whole.

Recommendations Please now find my formal recommendations to The Committee that I hope show intent to improve Agency processes (saving money and time) while also delivering improved satisfaction to scheme participants. It’s my belief It is my sincere belief that participants on the scheme seek to actively engage in good faith and as such we need to ensure that the Scheme is operating according to its design and purpose which are along “insurance principles” and not “welfare principles.”

Building Participant

Recommendation

Create an official Community Training Hub where all information relating to NDIS plans can be accessed.

We believe that many participants have difficulty understanding plans and how to use the portal. While there is some general information provided by the NDIA there is no central place where people can delve into the scheme in great depth. All that is needed is a small team (three trainers with one behind-the-scenes technician) to provide a range of webinars, articles and templates that can be kept up-to-date and relevant for participants. This would also ensure compliance with the community because if the information is found at the hub, it is automatically known to be accurate and reliable, taking out the guesswork and rumours that are now part of the NDIS landscape.

Actively encourage the building of capacity by tracking a participant’s engagement with the Community Training Hub.

e We are presently in a place where participants are being treated with suspicion and are assumed to be misusing support funds. Truthfully, many participants don’t use funds out of fear of misuse and if funds are used incorrectly it is due to the scheme’s complexity and poor delivery of information. The participant portal is not only difficult to navigate but it is extremely difficult to decipher and when calling the 1800 NDIS number, information changes based on who you speak to!

This above recommendation aims to build participant confidence and competence in scheme participation. When a participant joins the scheme they are expected to engage with a set of “core” videos and/or materials that will be mandatory to understand and follow. These materials will build on each other so that over time, each participant will be confident in all scheme aspects to, in time, limit the need for support co-ordination and plan management for the majority to participants. The engagement ceiling could be set that 70% of participants will engage to the minimum level which will assist with keeping standards of participant competence at a high rate. NB, There will always be a small group of people who for a range of reasons will not fit this recommendation (potentially due to lack of internet access, language barrier or cognitive barrier) and so there must be a mechanism that exempts people from this mandate.

Encourage participant support plan goals to align with the long-term view “insurance principles” of the scheme. That is, ensure that the goals are compliant with the schemes principles.

e To put it in simple terms, compliant goals are funded whereas non-compliant goals are unfunded. While this is partly due today (for example if a participant had a goal about improving cognition in a public school setting it would be stated in the support plan but the goal would not attract funding as it is a state responsibility), there is no transparency for participants in this area. At present, funding is not allocated to specific goals but multiple goals are attached to support plan budget categories, making funding allocation opaque and nearly impossible to understand. Additionally, as there are a maximum of

seven goals in a participant’s support plan, I suggest that they be aligned with the principles of the scheme like this.

Goals One and Two - Achieve economic participation Goal Three and Four - Achieve social inclusion Goals Five and Six - Achieve independence Goal Seven - Families and carers are well supported

Furthermore, the NDIA could provide a range of suggested goals (based on the Productivity Commissions sixty (60) subgroups) to help people to maximise their experience in the Scheme.

NB, the seventh goal is taken from the current National Disability Strategy (NDA) and is arguably the most crucial element to the long-term viability of the NDIS, especially as we have an ageing population with many current carers members of the “sandwich generation” caring for elderly parents and children with disabilities.

Make sensible changes to the planning process that reduces the risk of planning errors, participant dissatisfaction and participant confusion.

Where the same household has more than one participant there is no attempt by the Agency to align plans and dates. This is wasteful as so much of the planning process is centred around understanding the background of the participant and family. By aligning dates of household participants it allows planners to hear the background story only once (saving both the planner and the participant’s representative valuable time) and to also ensure that there is a targeting approach to supports for scheme participants and informal supports.

Additionally prior to plan submission to the Agency, participants should be send the final draft for them to “formally approve” (not unlike the process to electronically sign a document using Adobe) before the plan is submitted. This alone would mitigate the risk of review from planner error and also ensure that Agency resources are maximised.

Maintaining Community Confidence in The Scheme

Move away from a culture of “support plan rollover” to “support plan reset.”

At present the Agency is adding additional time to plans as they expire as opposed to allowing plans to expire to then resetting the plan for another year. While on the surface the two methods appear identical, in practice they are completely different as shown in the two illustrations below.

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Current plan rollover principle example:

Sam has a $10,000 12 month plan and it is coming to an end. There is $4,000 of unused funding due to him not being able to access occupational therapy for the first five months of the plan. His plan has been rolled over for another year and his plan now has $14,000 available as it has been changed to a 24 month plan.

Proposed plan reset principle example:

Sam has a $10,000 12 month plan and it is coming to an end. There is $4,000 of unused funding due to him not being able to access occupational therapy for the first five months of the plan. His plan has been reset over for another year and his plan has $10,000 available for the next 12 months.

Importantly in each example the goals are unchanged, the supports provided to Sam are unchanged and there is no loss of confidence to the participant. The ‘reset’ model delivered a budget saving of $4,000 whereas the ‘rollover’ model delivered no quantifiable savings.

Provide clear guidance and expectations before unregistered providers can support vulnerable NDIS participants.

At present approximately 90% of support providers are unregistered and as such, so much is unknown as to the expertise, qualifications and competence of unregistered providers. When we also think about the vulnerable participants who are trying to engage high quality service providers, the major element that participants have when making decisions on who to provide support, it usually comes down to trust. Participants in general are trusting their supports to act with integrity and honesty. While the vast majority of providers (both registered and unregistered) are trustworthy, honest and reliable, there is no simple test that participants can access which can be used to underpin this initial trust and ensures that potentially unsuitable support providers are rejected from providing support.

Just as the states and territories have their own evidence based “working with children check” for teachers, support workers and volunteers, the NDIA needs a similar system for all unregistered support providers. This “NDIS Unregistered Provider Verification” will check that the business or sole trader is insured, is suitably qualified to provide the stated service and has a benchmark character test built into the system. For a small fee (similar to the WWCC) unregistered providers will verify their basic compliance and this will provide peace of mind to all participants.

Provide clear guidance and expectations around participant reporting that is sensible and is based on ‘common sense.’

At present when a participant is planning for a review they are usually told to “gather evidence” which always includes updated evidence of their lifelong disability. However

as participants are thoroughly vetted when joining the scheme, there is a great deal of

waste that occurs when these expectations are conveyed. It is vital that participant’s evidence is relevant and based on the provision of supports from the previous plan and removes the need for duplicated and wasteful reporting.

For example, it is wasteful to expect a participant with a lifelong known degenerative disability to provide a new and detailed functional assessment at a cost of $5,000 when the one provided when joining the scheme stated that function will deteriorate over time. On the other hand it is sensible to ask for the participant’s therapy services (physiotherapy, occupational therapy and podiatry) to provide a detailed report on the progress of goals with updated recommendations for the new plan review.

Provide a culture within the NDIA that is committed to the principles of transparency, honesty, patience and helpfulness when delivering outcomes to participants and support providers.

At present all communication with the Agency is funnelled through one main telephone number and email address. While this is satisfactory for initial communication, when it comes to complex scenarios and following up planning decisions, participants are unable to access efficient and reliable solutions. The NDIA must foster a system where participants engage with the relevant department and/or person as quickly as possible which will allow faster solutions to problems, ‘nip issues in the bud’ which will deliver increased levels of productivity, reduce waiting periods to receive communication and work to rebuild trust that has been eroded over the past few years.

Ensure that participants are given choice and control to not only their goals and supports, but to also planning and/or review meetings.

When the Scene began there was a great deal of choice and flexibility to engage with the Agency however this has all been eroded since 2020. There needs to be a return to the commitment of allowing participant choice and control in relation to planning meetings and reviews, and that includes in the home of the participant.

Reinvigorate the National Disability Strategy and ensure that all Australian States and Territories are actively involved in the policy strategies and directions to share responsibilities with the federal government.

Even if the proposed bill passes federal parliament we will have this issue arise again. Are we not ‘kicking the can down the road?’ The only long-term solution is to ensure that the States and Territories collaborate according to the National Disability Strategy and not expect the federal government to lift the entire load on their own.

Thank you for the opportunity that you have provided for me to make a submission and if you require further information please do not hesitate to contact me at your earliest convenience.

  Thanking you,

                     Lead Art Therapist
                       Behaviour Support Practitioner

                             Bachelor of Primary Teaching
                             Bachelor of Education
                             Bachelor of Ministries
                        Diploma of Science (Gemmology)
                        Diploma of Art Therapy

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