By now there was a new CEO. He would run this Disability Service like a business, and he would make it work efficiently and profitably. He did not want to cut financial corners for his clients, so he organised fundraising activities, which were well received.

He set up a Health Care Team which included the new dietician and other allied health professionals. The Head of the Health Care team was to oversee all her team members, as well as rotate around the Group Homes to ensure everyone remained in optimal health. She would be on call twenty-four hours a day for any emergencies.

That seemed like an efficient and effective way to run the business – and could give confidence to any former caregivers or parents, most of whom did not want much involvement. They were tired and worn out from years of caring and were happy to leave it to the experts. For most, there was little regular involvement, if any.

**********

Jonathan’s weight charts showed he was slowly losing weight.

The dietician was apparently concerned, as it did not look good that he was losing weight while in their care.

I was told that these severely disabled people aged more quickly than the normal population – perhaps he was winding down. An excuse?

He seemed to be slower at eating these days, and less interested in food. He was losing his chewing skills. His jaw was tiring. Sometimes he was vomiting after meals, and also vomiting after receiving his medications.

I knew what the problem was instantly. They were feeding him too fast. And they were repositioning him too soon after meals. He needed time for his food to settle – and this was all written in his file.

I continued to believe, and to remind the dietician, that he simply needed to be fed with sufficient help, and that he could enjoy all foods if they fed him slowly enough.

No one listened.

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The Disability Service took him for his annual visits to the adult specialist in disabilities at the hospital. I usually met them at the hospital so I could be present at the assessment and interview. I was listed as the “Person Responsible”.

I soon realised that this disability specialist was, not unnaturally, a friend of the paediatric specialist who had recommended, years ago, that Jonathan be tube-fed for my convenience.

She was a strong woman who did not like to be crossed. She believed in tube-feeding for all these “people with eating problems”. That was her area of specialisation – people with eating disorders. Their skills always declined as they grew older, she tartly informed me, as if I had no idea that would be so. And these people were in danger of aspiration, which would lead to aspiration pneumonia … and to death. Aspiration became the next keyword. Everything she said was based on generalisations, and while her utterances may have been true, they were also very negative.

Had he ever aspirated in the almost ten years he had lived with me? No. Had he ever had any lung problems? Never. In fact, he had never been ill at all, and had rarely had even a mild head cold.

To her, and to his Group Home, he was not an individual. He would be like all her other patients. He was a problem because he ate very slowly and yet ate a lot. At my home, he’d always eaten at least as much as my husband, and took twice the time. It had been the family joke.

Despite the quantity of food he’d always eaten at our home, he was very slight, not an ounce of fat on him. Skinny, but healthy.

My view, which she “heard”, but in fact did not hear, was that if the home staff would simply feed him what I had suggested, and in the way I had always done, the tube-feeding could wait until it was necessary. I reminded her that the dietician had been happy with every component of my feeding plan.

I also reminded her that food was always so important for him – one of his very few pleasures in life, delighting his senses of taste and smell, and appreciation of textures.

I may as well have been talking to a brick wall.

She had three weapons: his slowness at eating, his danger of aspiration, and his low weight. In my mind, all were manageable. In her mind, they were significant problems.

I asked her whether at this stage tube-feeding was a medical necessity. No, it was not.

But if it was done, she countered, one would never have to worry in the future …. He was below the weight norms for his age group, she reminded me. Yes, he was – and always had been. I reminded her that weight norms were calculated for the normal population with appropriate muscle development, not for severely disabled and spastic people, and not for people for whom the growth hormone had not been released during the years of early childhood.

Being in good health and enjoying his food seemed to me to be more important than meeting a weight norm by subjecting him to an unnecessary operation, and then force-feeding him.

What would I know? I was simply an ex-foster mother.

I sensed, with a sinking heart, that the medical profession did not really have his best interests at heart.

She wanted him tube-fed.

I would not agree to deprive Jonathan of the pleasures of real food for no good reason at that time – apart from convenience for the staff, and saving them time.  I would not sign the permission forms. Sheryl, his birth mother, agreed with me. She did not want her son tube-fed.

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And so the battle continued. I was perceived as a nuisance.

How much simpler life would be for the house staff if he was tube-fed and they didn’t need to worry about food plans, shopping, preparation, the slow process of feeding ….

From my experience at working with tube-fed children at his school, I knew too that once tube feeding happened, there was likely to be a significant decline in his facial muscle and jaw tone, as well as general oral health.

Of course, the disability specialist told me over and over, along with the Health Care Team, he could still eat food as well as be tube-fed. Calories and nutrition by tube, pleasure of eating as well.

We all knew that if he was tube-fed, “they” would want to pile on the calories so he would meet those elusive norms – but I also knew that if he was full or over-full, he would not accept additional food. He’d always known when to stop – when he was full. He would decline even a single teaspoon of extra food on top of a full stomach.

If he was tube-fed, there would be no control on his part over how much was pumped into him. He could not say “Enough!”

**********

I remained polite, but firm. I asked numerous times for the Group Home staff to follow my guidelines, and he would gradually put on weight. No. They had to follow the dietician’s orders, and the dietician had to follow the orders of the Head of the Health Care Team.

And the Head of the Health Care Team? She was a friend of both the disability specialists for eating disorders at the hospital. I should not have been surprised.

Furthermore, she was highly respected among her peers because she was studying for her doctorate. The subject of her thesis? The benefits of Percutaneous Endoscopic Gastronomy feeding, otherwise known as PEG feeding, also known as tube-feeding.

In addition, the Disability Service received government funding – which depended on the level of complexity of clients’ disabilities. And, as I later found out, the government funding to the Disability Service would significantly increase if he was tube-fed, (and others also) because their needs would be perceived as more complex.

Was I the only one to see a conflict of interest for the Disability Service between the personal well-being of the clients and the level of government funding they were hoping to receive?

I knew this would be a David and Goliath battle. I sensed the net closing around me.

**********

The Head of the Health Care Team and the dietician were devising another “helpful” strategy for Jonathan.

I did not trust their expertise. Too many disappointments in the “system”. Too many times let down by so-called experts.

I knew their helpful strategy would not work for him. I knew too that we were being led, or perhaps pushed, inexorably down the path towards tube-feeding….

The Disability Service policy of including and listening to the family? Only when it suited.

Possession is counted as ninety percent of the law. Jonathan was now “their” property, and “their” responsibility. Yet, they could do nothing without the signature of the Person Responsible – and that was me. They wanted to wear me down, until I just went away … or complied. Should I simply bow out and leave Jonathan to the “experts” in their field?

I too was weary from years of care, now sixteen years. Was it all too much? Was my role as a foster mother over? Officially, yes, it was. But I was still the Person Responsible for Jonathan, and despite their expertise, I still knew him better than any of them, and my priority was his well-being and happiness.

**********

What had been touted as the purpose of the Group Homes? To normalise the presence of disabled people in the community, and to promote their acceptance as people of value.

Yet what was happening behind closed doors? What was happening when specialists and business managers did not see them as individuals to be respected and valued?

They were commodities, perhaps sources of extra funding from the government.

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I decided to keep a copy of every email, with the requests I made, any discussion, and the action taken. Most times my emails were ignored. But I filed them away anyway.

Just as well I did ….