To the Honourable Members of the Joint Standing Committee on the National Disability Insurance Scheme;

I submit the following to the Committee as the father of a child accessing the NDIS. My daughter, 15 years old, has a congenital genetic defect called CDKL5 Deficiency Disorder (CDD). The condition presents with intractable epilepsy, global developmental delay resulting in a developmental age of approximately 9 months, cortical vision impairment, low muscle tone and several other underlying issues. Her condition is not curable and requires total care for all aspects of her life. She cannot stand on her own, will only walk short distances with assistance, and is non-verbal. She will sit for short periods but is unable to be left unsecured in chairs due to seizure risk and being unaware of her position in space (distance off ground, etc).

This is only some of the issues we face in managing her daily care. A full rundown is impractical, but I trust the impression is made. Her care is all-encompassing and a full-time job for two people at all times.

The introduction of the NDIS several years ago, in 2018, in our Local Area was welcomed with optimism. The first plan was a wholly positive experience, with a Planner whose background in Social Work in the disability sector made for a rare time when we felt supported. Her plan, active in October 2018, provided for the sourcing of quotes and reports to determine suitable Assistive Technology (AT) that would make her care easier and safer for her support workers – both formal and informal – and offer greater freedom for our daughter. These AT were a new powered wheelchair that offered a lay flat-to-sit-to-stand function, an off-road wheelchair for outdoor activities, a change table and shower chair for personal hygiene, and bathroom modifications to allow the previous two items to be incorporated into our home.

By the time of the first Plan Review in August 2019, the reports from specialists regarding the AT, and quotes for the items, were provided to the Co-ordinator and taken into consideration for the next 12-month plan. The result of this review saw the Planner deny all of the equipment requested. Upon a request for a review of the decision by someone with more experience in complex special needs, we were again denied on the grounds that the requested equipment, and subsequent modifications, failed to meet the ‘reasonable and necessary’ requirements of the NDIS Act. The only expanded information that we officially received was that the sit-to-stand function of the wheelchair failed to demonstrate any actual benefit to our daughter, and that sit-to-lay flat options hadn’t been considered.

As a result of this denial, we began proceedings with the Administrative Appeals Tribunal to have the decisions reconsidered. In September 2020, three of the five AT matters were resolved in our favour, with bathroom modification approval awaiting updated quotes, and the offroad wheelchair request having been withdrawn as we couldn’t wait any longer and purchased one at our own expense earlier in the year.

Several key points that I wish for the Standing Committee members be aware of are:

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1. NDIS personnel suggested alternative equipment for consideration, having denied the recommended equipment from specialists. NDIS representatives with no formal training in physiotherapy or occupational therapy elected to offer suggestions on alternative equipment that may be acceptable to funding under the NDIS. Without exception, all suggested AT equipment was unsafe and wholly unsuitable for our daughter. The Planners have not met or dealt with our daughter in any way, and are in no position to suggest equipment on the one hand whilst refusing to accept the recommendations contained in the reports of those specialists that do know the client and the client’s needs.

2. The NDIS ‘T-Documents’ do not contain the parents’ Statement of Lived Experience’.\nThe T-Documents are those used by the Planners in developing the plan for the year, and those related to our daughter were obtained via Freedom of Information Act application earlier in 2020. They contained all reports submitted for the Plan Review in September 2019, but did not contain the Statement of Lived Experience from my wife, provided in the review meeting. That this crucial information is excluded from consideration is inconceivable.

3. The NDIS refused AT and bathroom modifications on grounds that could have been explored further, or even resolved completely, with a phone call or email to the parents or specialists/therapists. We were informed at the first AAT Case Conference by the counsel for the NDIS what the reason for refusing the requested AT (powered wheelchair, off-road chair, change table, shower chair) and bathroom modifications were. Each of the reasons, indicated below, could have been resolved with a phone call or email to relevant person for clarification, which was explicitly stated as an available option to the reviewer when we asked for the review after the updated Plan denying the equipment and funding. No one was contacted – not parents, specialist medical professionals, nor therapists that provided the reports.

• Powered Wheelchair: Sit-to-stand feature didn’t show any benefit for our daughter’s condition.
  • Our daughter already has a sit-to-stand wheelchair, and the medical benefit as well as therapeutic benefit, have been demonstrated over the preceding few years. The chair was obtained because of the recommendations of specialists and therapists. All this was contained in multiple therapist and specialist reports.
• Off-road wheelchair: Apparent duplication of the powered wheelchair.
  • The powered chair is only able to travel on firm, smooth surfaces, and is not for community engagement in the way that the off-road chair permits access to beaches, camp grounds, etc. A simple query to us as parents would have clarified this.
• Hygiene / Shower Chair: The hydraulic recline mechanism unnecessary.
  • Multiple products were reviewed in the process of determining the suitable equipment, all extensively detailed in reports. The shower chair that was the only option suitable has a hydraulic reclining mechanism. It is not available in any other configuration. There is no

• Other option: The denial of this equipment was based on an assumption rather than a query to the therapist for information.

• Change Table: Not enough alternatives considered.

  • There was a report submitted by an occupational therapist in the required format detailing what equipment was trialled and the reasons for the recommended device. Incidentally, the change table was approved at the end of the first plan and was now being denied.

• Bathroom Modifications: Unexplained discrepancy between the two quotes provided.

  • The two quotes were approximately $53,000 and $28,000. No contact made with the OT or us as parents to explore the reasons for the differences. Indeed, we as parents hadn’t been informed of the quotes – they went direct to the NDIS. A simple phone call would have had the NDIS learn that the two builders consulted had different concepts. The first proposed significant changes and came up with the higher quote. The second envisaged much different layout and came in much cheaper. The latter was also preferable to us.

4. The AAT process has been a total waste of taxpayer money: After multiple Case Conferences with the AAT where the NDIS was represented by legal counsel, and multiple follow-up reports and quotes, 12 months after the Plan Review of 2019, we find ourselves exactly where we asked to be in the first place: the powered wheelchair that was recommended originally is approved; same applies for the shower chair and the change table. Bathroom modifications are once more going through quoting process at expense of the NDIS. Off-road wheelchair withdrawn since we opted to fundraise ourselves bought one our own volition earlier this year unable accept delay imposed by NDIS on daughter’s social fulfillment.

I hope list above shows each item could resolved with simple call instead fought answers advocated child.

We had resources fight obtain equipment originally recommended over twelve month ago but fear those who don’t such resources unreasonable unnecessary delays obtaining suitable AT resulted her outgrowing current wheelchair unable attend school transported ambulance additional funding obtained support worker hours aid home she broken bones seizures outgrown wheelchair times would have new powered wheelchair original process effective Even before NDIS sourced funding donors fundraising met needs.

Process left wife me severe mental health issues depression stress anxiety requiring medication management worse dealings NDIS Three other children expressing frustration sadness lack attention give focus daughter’s need Additionally COVID-19 challenges compounded daily struggles point marriage family unit highest ever risk failure.

It is the fight with the NDIS that has taken us to this point. And now we are experiencing the lead-up to the fight for the next annual Plan, knowing nothing has changed in the NDIS from a year ago when our reasonable and necessary requests were deemed unreasonable and unnecessary. Because after a 9-month fight, with the same reports from the same specialists, the NDIS now acknowledges that the requests were reasonable and necessary. We fear what the next fight will be.

The NDIS system is functionally broken, and bureaucratically blind to the detriment of those

who rely on it most. All humanity has been removed, to the point where not even a phone call or email is made to parents or specialists during the decision-making process where safety and basic human needs are in the balance. I cannot believe that this is the vision of those who wish to provide the best for our society’s most vulnerable, even as a part of a balanced economy.

I extend an open invitation to be contacted regarding my experiences for further information.