Senate Joint Standing Committee into the NDIS

Culture.

Submission by a carer for a carer of a NDIA participant.

The carer, redacted, wishes to provide her own submission and maintain her privacy.

Thank you for providing the opportunity to make a submission.

redacted is dedicated to her daughter, E, and has provided a safe, loving, caring environment for 30 years. Her daughter has ASD and ID. She has severe impairments in all the 6 domains. She is a talented artist, studies basic piano, etc., a lovely woman. E has not needed public health services other than the normal maladies of any young woman. redacted` cared for her daughter, E, while working as a Maternal Health Nurse for 24 years, running between mums, babies. Apart from the brief time she had a mastectomy, chemotherapy, being the breadwinner for the family. In the early years E was minded by her ex-husband then her elderly mother. Her elderly mother became frail and has passed away so there is no family support except for once a year respite break.

I am not blood related so cannot provide personal care of a young woman. I am redacteds life partner becoming her carer due to her metastatic breast cancer, present in her bones, liver as revealed in a PET scan October 2021. I am 70 years old, have had chest pain, irregular ECG and undergoing tests with a Cardiologist. I have been in a situation outside a hospital, P having been admitted, at midnight with no support. Emergency support is nonexistent.

This NDIA plan review experience on top of the dire health diagnosis would have broken most people. We have had to seek mental health support. The cancer medication aggravates pre existing hip, joint issues resulting in chronic pain particularly at night. There are a number of other side effects. Sleep deprivation is extremely debilitating. Opioids are not an option given her responsibilities. She is giving herself the best chance and the treatment is progressing well given challenging side effects.

• 100’s hours were spent in plan preparation,
• proof reading clinician reports,
• giving feedback,
• further details etc.

To date we have consumed over 2 reams of paper, 2 toner cartridges. One email was 29MB, too large for Gmail and had to be sent via google. We have had to upgrade software etc.

P’s treating Oncologist provided the clinical diagnosis in his report.

So the NDIA required a 2 year plan assessment and slashed her plan by nearly 40% despite all the supporting clinician reports.

We were told a change of circumstance should not be necessary as the plan review would take the dire medical condition of the carer into account. The plan was reviewed, and they doubled down without the decency to engage. We ended up at a directions hearing before the AAT without any legal assistance. All the support agencies are fully committed. We did get some phone advice from an agency outside our area, Villamanta.

The local council does not provide any support, despite 5 peer LGA’s contributing to the nearest agency, DJA, who was sympathetic but fully committed. Leadership plus and AMEDA were also sympathetic.

The process was intimidating and shameful that the NDIA would do this under the circumstances. It’s a disgrace this was not settled at a conciliation. I think the family court has such a model.

The lawyer for the NDIA provided a statement of issues. Our position was they were erroneous, negligent in not addressing the cancer diagnosis and P’s inability to provide all the necessary informal care as before.

The senior member directed the NDIA to review the plan due new information. The solicitor for the NDIA accepted this direction and will review it within 28 days.

The local member, who we sought assistance from with this matter, submitted a complaint on our behalf. Nowhere, to our recollection, in the appeal correspondence was a complaints procedure listed. It was stated a review by 2 delegates then the AAT. So the NDIA has replied to the complaint, apologizing for the upset and distress caused. It rubbed salt into the wound by stating it is before the AAT, all agreements to resolve a case are on best information available, model litigant and non-adversarial. We were aware a minister cannot intervene. This is totally not how we have been treated.

So nowhere in this process is the NDIA accountable for their performance. From my experience there is no quality assurance, no case worker model, until just now with a complaint lodged, no case conference, no mediation. Update we now have a case worker contact. The plan funding pays for the Clinical reports and then does not take them seriously or ignores.

• From our perspective the Delegate review process was a sham.

• The fact is they are anonymous, uncountable, not qualified to make the determination.

• 2 vital reports, GP, Speech Therapist were not attached to the first review yet they were still able to make a determination. Completely failed to acknowledge the drastic change of circumstances, the carer’s cancer diagnosis, severe side effects. We now have a report from the OT, SDA accommodation reinforcing the OT report already submitted scientifically benchmarking the severe impairment in the 6 domains as required by NDIA.

Support worker accreditation, training. In the early days we had to spend more time training, familiarizing every new worker. We now have some core workers who are like family. Often the support worker funding hours are taken up with consulting, planning activities. There is no respite in effect, only if the carer can leave the immediate environment. There was virtually no respite in the early years of Covid. P is immunosuppressed and every interaction has to be risk assessed. Zoom has provided the necessary therapy options as we all have utilized when appropriate. Language and culture differences can be a major impediment. One worker fed E insufficiently cooked rice, turned the heater up to 27C. She presented for work the next day after her nephew had been killed in a road accident, actually a gang dispute in i think. In my opinion she had PTSD and came from a war torn country. We had to decline her services.

They focus on cutting plans but make no effort to engage with participants, advocacy groups on how costs could be reduced. A study concluded $2.2 benefit for each NDIA dollar and is an investment. The public health system is in crisis so every admission avoided is beneficial. Some idea of the scale of contribution of carers can be made when alternative arrangements are costed.

Anecdotally from ABC talk back radio, social media, there is inadequate focus on provider malfeasance, performance. One carer was being pursued for payment of sub standard service. She was not supported by NDIA compliance. I heard of one worker, inexperienced but entrepreneurial, who was charging for unworked extra hours to increase the effective cap of $62.17 ph. Any malfeasance, from any quarter, is sickening and the NDIA should do their job and enforce compliance. Our support workers are like family and it takes time to build up mutual trust. As the pool of support workers grows I see greater opportunity for efficiencies, more independent support workers.

I also see possibility for day, respite centres to reduce hourly cost of care but please not the aged care model. The state should provide the building, enjoy the asset appreciation and invite providers to run the centres.

They could be multi function ongoing skills, teaching hubs.

Some support workers are in need of life skills, must complete, be provided with supervised face to face opportunity before becoming accredited.

It would be hard to reproduce the magnificent Arts Project Australia but is an example of such a model.

Local government in our area has walked away from any involvement.

It is a desert in regards any form of care, support outside the home.

Regards