Jonathan's Story : The good, the bad, and the sad by Wendy G |
We were asked to wait in an adjoining room while the Guardianship Tribunal panel discussed our case. I had no idea which way it would go. The panel always consists of a lawyer, a professional person who has experience of the treatment of people with a disability, and a community member who has personal experience of living with a disability. The CEO of the disability service would have fallen into the second category of Guardianship Tribunal panel members. He would doubtless have known the other professionals in this category, and almost certainly the lawyers as well. Would that prejudice the outcome? Was this Guardianship Tribunal trustworthy? I had no idea. The panel members seemed to be perceptive and astute, and they had read all the details of neglect and cover-up, along with the bullying letters, that had been occurring for years. Would our words hold enough weight? The disability service had little to support their case except that I was "not responsible", in delaying needed approval for tube-feeding, and that “such people as Jonathan usually aspirated and died because of swallowing difficulties.” They would have emphasized that Jonathan was very thin, with diminishing desire to eat and drink – not surprisingly, in my opinion, considering what he was offered. We were finally recalled. The lawyer, who chaired the panel, gave a summary of their understanding of the matters, and discussed several issues related to the information they had been given. He noted particularly that there had been very poor communication, which had to be rectified immediately. He continued further, announcing their decision. Guardianship of Jonathan in all matters related to his health, medical treatments, and well-being was awarded to … ME! I was to be his primary Legal Guardian. My husband was to be joint guardian. We had won! Being Jonathan’s Legal Guardian carried far more weight than simply being the Person Responsible. And he had TWO Legal Guardians … just in case. I had the final say in all decisions about his health, medical treatments, and well-being. However, I had already agreed to an operation for a PEG tube to feed him as it was now an imperative. He asked if I was still willing for that to go ahead. I was. It was now a medical necessity. The position of Legal Guardian was to be valid for six months only, when it would be reviewed. We would have to go through all this again. The personal assistant left hurriedly without a word. Had the letter from Jonathan’s uncle Luca made a difference? It had not been mentioned in their summing up. Nor had it been referred to during the proceedings. But the Guardianship Tribunal panel had at least read it. It was evidence that a well-respected member of the legal community had faith in me and my care for Jonathan. Perhaps the letter had not made any difference, but that was nevertheless the gift from Jonathan’s uncle. His father’s family respected what I did, and what I had done for many years. That token of support was very meaningful to me. ********** At a subsequent meeting with the CEO, he smilingly suggested to me that the Person Responsible had the same rights and authority as a Legal Guardian – I could let guardianship lapse so it would not be necessary for us to renew our legal guardianship of Jonathan in six months’ time. To make things easy, I could simply revert to being the Person Responsible and save all the time and effort of having to reappear before the Guardianship Tribunal. Very strange! Being a Person Responsible had had no power or importance previously. The only requirement seemed to be to sign the documents which needed signing! Input was not welcomed, apart from for Jonathan’s Day Program which was managed by a very competent lady. Who did he think he was kidding? Did he take me for a fool? I now had the full authority of the law behind me, and I would keep it. His hands were now tied, and he knew it. He had initiated the process, not me. But retrospectively, I was glad. His plan had backfired. He was on notice, and their disability service had had a lot of incriminating evidence showing them up. They would have to be very careful. In my opinion, they had a lot to answer for. I wondered what his standing as a panel member of the Guardianship Tribunal was, now that he had been exposed in his role as the CEO of an organisation rife with problems, cover-ups, systematic bullying at the top levels, and lack of transparency. ********** Meanwhile Jonathan’s percutaneous gastrostomy operation (PEG) operation was my next concern. He would be tube-fed from now on. The surgery was to be carried out a couple of weeks after the Guardianship Tribunal hearing, in mid-October 2013. The procedure was completed with no complications – until that afternoon, when he was to be driven home. It was mid-spring and worrying bushfires had again broken out in the area between the major hospital and his home. Within a very short time frame, the fires had gone wild and out of control, and high fuel loads, combined with hot, gusty, dry winds turned the normal day into a time of extreme danger, soon developing into a state of emergency. Everyone was listening anxiously to half-hourly news reports, each worse than the preceding one. Schools had been considering whether to send students home early or whether it was safer to keep them at school. Some schools underwent emergency evacuations, and radio stations kept parents informed as to the whereabouts of their children, and if and when it would be safe to collect them. Evacuation centres were being set up. After school on this terrible and frightening day, I visited him in the hospital. He was still under the influence of the anaesthetic and pain medication. But where was the van to take him back to his Group Home, an hour’s drive away? I asked if Jonathan could remain in the hospital overnight because of the fires raging between the hospital and his home, but no, the hospital wanted him discharged so that every possible bed was available for emergencies from the fires. The van to collect him was delayed by nearly two hours. He had been given pain medication after the surgery, but by the time the van arrived, it was starting to wear off. I asked whether he could have more pain medication, but no – he could have the medication only four-hourly, so they would not give him a subsequent dose. The main road to his home, sixty kilometres away, was closed to all but emergency vehicles – fire engines, ambulances, and police cars – but after explaining his situation, the driver was given approval to take him home. Unfortunately, he had to keep pulling over to allow these emergency vehicles through. At times, the road was blocked by fires leaping across the highway. The impact on Jonathan was significant. It was a nightmare for the driver, and much worse for Jonathan who was in terrible pain, distressed, and biting his left upper arm, something he had not done for years. That one-hour trip took four hours, and the pain he was enduring was unbearable. I was very upset to learn of this. Why did this young man have to put up with so much? The fires continued to spread, despite water-bombing with helicopters and round-the-clock work by all the ground crews. In the next few days, the Group Homes were evacuated, and the clients were taken to the Day Program Centre for a couple of nights. Fortunately, the house parents and care-workers were responsible and caring, and well-trained for such an emergency, and the evacuation of many non-mobile and non-verbal clients proceeded smoothly. The staff were wonderful and reassuring to their young clients. ********* The dietician/speech therapist was trying to work out a tube-feeding regime for Jonathan. It was not easy, as the rate of feeding had to be very slow until his body adjusted to it. If they gave too much of the food formula, or if the flow was too fast, he was ill. That of course also affected the efficacy of his medications. I questioned them about the chance of his aspirating during such episodes. “Oh yes,” the dietician replied, “tube feeding does not eliminate the possibility of aspiration, but hopefully it will reduce the chance of it ….” Not what the Head of the Health Care Team had told us! She was doing her doctorate on Percutaneous Endoscopic Gastrostomy (PEG) tube feeding, so she must have known this. But for her, PEG feeding was the ultimate solution to everything. Risks were either not mentioned or brushed over, spoken of just in passing, with emphasis on the positives of the tube-feeding method. It took months for them to sort out such things. In the end he was basically tube-fed almost around the clock. He needed a very slow flowrate. What about their promise to allow him to eat small quantities of normal food for the pleasure of eating, and for taste? And for maintaining his jaw strength? When he was ready, I was told …. I asked them to allow half an hour without the liquid nutrition, which afforded a small window of time for him to get “hungry” enough to sample normal food. I also insisted that they not pump more liquid into him for at least half an hour after eating normal food, so that he could digest it. But that also meant a shortened time for tube-feeding, and therefore he wasn’t getting enough liquid nutrition to meet his daily quota. Offering him food at that point sometimes worked, and he would eat a little, most times not. Otherwise, the inevitable happened. So, my suggestions were not readily accepted. I was not a medical person, after all! The reality was as I had predicted. He was so full of the liquid nutrition that he was not hungry enough to eat anything else. He had no control over what was pumped into him and was subjected to their push for him to reach their weight goals. They recorded his weight increases, and proudly sent them to me at irregular intervals. Improved communication! Nobody would call it force-feeding, of course, but that’s what it was. Ticking that weight-goal box for population norms was their highest priority.
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