Jonathan left that hospital after three weeks, without a proper health care plan – a failure on the part of the hospital personnel. The hospital social worker had considered this an important, even necessary, step, and wanted all parties to be present, but somehow the disability service organised for his discharge more quickly than anticipated, because there were bushfires in the area, and they wanted him safely home. The hospital workers did not have time to gather all parties together for a case conference to draw up a health care plan.

There was no communication with me – even though I was the Person Responsible – about plans for his expedited discharge, nor for his immediate and ongoing feeding needs, although the disability service surreptitiously provided input to the hospital, from at least three staff members. Yet I, as the Person Responsible, was not present.

Their views were, of course, reflected in the quickly documented hospital discharge papers. In brief, they told the hospital clerk what to say. They then could justify their actions on the basis that “the hospital document said ….” I was appalled at their duplicity.

**********

The plan was that Jonathan’s percutaneous endoscopic gastrostomy (PEG) operation to insert a feeding tube directly into his stomach would be performed in a different, major hospital– it was to be scheduled for as soon as he had recovered sufficiently from the cyst.

It was now urgent that he put on weight. He was thin, and very weak.

The procedure was a straightforward one, and he would go home that same evening. This hospital’s medical staff would work out a tube-feeding regimen which would provide the calories he needed – and a little extra so he could gain a few kilograms.

 **********

Shortly before that happened there would be a life-changing phone call to me – from one of the excellent care workers at his home. Luke had been aware of the ongoing conflict between us and the senior management – and he believed in what I was doing and saying. Despite working there, he did not trust his superiors.

Luke was shocked himself at what he had found out and wanted me to be aware of what was brewing. He knew I would need time to prepare myself.

Had I heard what the CEO was planning? Well, no …. They were never good at communicating, and certainly not something like the bombshell which followed.

Luke continued by telling me that the disability service was planning to take me to the Guardianship Tribunal, and that they wanted a court order to make themselves Jonathan’s legal guardians. This had significantly more legal authority than simply being the Person Responsible.

They would then have full control over everything in Jonathan’s life – and I would no longer even be the Person Responsible, and we would quite possibly be banned from having any further contact with Jonathan.

I was horrified. Shocked, yet again, by this … how could they do this? And why?

We had already agreed to allow him to be tube-fed. Why this extra, and cruel, harassment? The CEO was very vindictive.

Luke said that we had better prepare whatever documentation we could. No problem. We had plenty.

This would be the show-down.

By this time, we had thirteen years’ worth of documentation, and I was prepared to show and tell. I would expose everything.

 I had emails, notes from meetings, transcripts from phone calls, and the incriminating photos of Jonathan after his “accident” while in their care, medical and health reports. It would be a mammoth job to collate it all.

Legally, the disability service was required to notify us of their intention to take us to this important legal Tribunal. They did not, either verbally or in writing.

Another phone call from Luke was even more shocking. The CEO himself was a board member of the Guardianship Tribunal! He, of course, knew all the other board members.

He would not hear the case himself, because that would be a conflict of interest. The disability service would be represented instead by his personal assistant. Presumably, that would not be a conflict of interest!

My heart sank. How corrupt. He would feed her the information, tell her what to say … and he doubtless knew everyone who would be judging our situation! I was very anxious.

That’s where my level-headed husband, who stands no nonsense, would become very useful. He has an excellent memory for details and would not hesitate to speak up if necessary, on my behalf. He can think on the spot and is quick to notice discrepancies between fact and fiction.

Our eldest daughter Anna, who had recently married, was an astute businesswoman with a very clear head. She had always been a born organiser, and in such situations as this she was an excellent ally. This was her forté, and she thrived on a challenge. She was not daunted by bullies – at school she had overcome the bullies, as she reminded me.

I forwarded all my emails, and reports to her, and she organised and presented them all in dated and classified tables.

Notably missing were responses and actions from the disability organisation. Equally conspicuous was the number of times I had asked for, but not received, information from the disability organisation about Jonathan’s well-being, general health, and weight.

Notes of meetings showing inconsistencies and discrepancies between what they were saying and what they were doing were highlighted.

The photos of his face after the accident were included, along with the inappropriate responses of the staff from the care worker responsible, the nurse, the Head of the Health Care Team, through to the CEO himself, and the fact of the broken jaw, never admitted to or apologised for, just swept under the carpet.

Anna’s binder, almost ten centimetres thick (around four inches) was a damning indictment of their care, or lack of care, over the years, as well as of a disturbing lack of transparency in all decision-making.

There was a final master stroke. I wrote to Jonathan’s lawyer uncle asking simply for a letter of reference as to our care for Jonathan over the previous twenty-two years. He had offered to help if we ever needed anything for Jonathan’s care. He was thinking of financial assistance. All I asked from him was a letter.

His legal standing as a respected Queen’s Counsel far outweighed that of the Guardianship Tribunal. He wrote a kind and honest letter about the consistency of our care and love for Jonathan during this time, adding that he had full confidence in us and the decisions we had made on Jonathan’s behalf.

The disability service had still not mentioned their intent to us, but at least we were not taken by surprise when we received a communication from the Guardianship Tribunal, notifying us of the date and time of the proceedings, and asking us to submit any reading material for their perusal a fortnight in advance.

 A few days before this deadline, we received an envelope from the disability service – weight charts and other health information covering the previous ten years. This bundle was included in Anna’s file, with the date received highlighted.

We were ready.

I asked Anna to accompany us on the day. We had our copy of the massive file she had prepared – and it was impressive. It was logical and ordered; important facts could be easily located. It had an index, and was presented in sections with tabs, so we, and they, could refer to any information very quickly. The three of us prayed together quietly before we were summonsed.

**********

The personal assistant of the CEO of the disability service walked in. She was carrying a thin folder with just a few pages.

The waiting was awkward, but finally the panel gathered and took their places. We were about to begin. I felt ill with nerves and trepidation. Anna took my shaking hand.

Each panel member introduced himself or herself, and from the outset it was clear that each one had read our file, and their insightful and probing questions testified to their understanding of the matters to be discussed.

Questions were addressed to each of us. The CEO’s personal assistant was asked directly if the organisation had followed its legal obligation in advising us of their intent to bring the matter before the tribunal.

“Yes!” she declared.

The Guardianship Tribunal noted that we had stated that we had never been officially advised of their intent, either in writing or verbally.

“Oh … er. Well, maybe we didn’t … I’m not sure,” she stuttered.

The panel member smiled slightly.

At one point the personal assistant must have felt that she was losing her case for she suddenly turned to me and said quite nastily, “Anyway, no one likes you!”

Shock must have been evident on my face, because I related very well to all the present and recent hands-on caregivers, and it was one of them, Luke, who had forewarned me of their plan to grasp guardianship of Jonathan.

It was probably true that the CEO, his personal assistant, and the Head of the Health Care Team did not like me – and the feeling was mutual. They had never shown integrity in any matters related to us.

I need not have worried. The head person on the Guardianship Tribunal Board said sharply that that remark was unnecessary, uncalled for, and most likely untrue … and unrelated to the case in hand. It was to be withdrawn, and not recorded in the notes of the meeting.

Shortly after, they withdrew to discuss the case and come to a verdict.