The Government had recently declared that it would put an end to all institutionalised care, for the disabled and for the mentally ill. It had not, however, been realistic in its approach to how this would best be implemented to suit the needs of clients.

Institutions were given a deadline and offered the “freedom” to work out the details themselves. There was little or no appropriate help to set up alternative accommodation or staffing structures.

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A year or more passed, while preparations were being made for all the clients in Jonathan’s institution to be moved into Group Homes, dotted around the neighbouring suburbs. Now that Jonathan was settled and happy in the institution, I was a bit sad that another upheaval had to happen. Everything in his new home functioned smoothly, happily, and well. It did not seem at all like an institution, and it was a happy and cheerful place. I hoped this would continue with the new system.

Changes were rapidly taking place.

Finally, Jonathan was allocated to a house. We were invited to choose furnishings for his room, which would also be freshly painted in colours of our choice. It made us feel happy to be included in such decisions. He’d have three housemates, whom he already knew, and there would be twenty-four-hour staff. He would continue to travel back and forth to his Day Program.

It sounded good.

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Everything always sounds good in theory. It’s whether it works out in practice.

The reality was that the devolution into group homes with its government-imposed deadline had some serious issues in finding trained staff – there were simply not enough. The disability service was desperate to find people willing to work in this area.

House parents would now do the cooking, as in other families, so the cook was no longer needed at the institution – after many years of successfully catering for these young people she was out of a job.

House parents were duly appointed to each of the homes. Most had little or no experience with complex disabilities – but were “being trained”, and they were all “very excited” to be looking after our young people. Perhaps excited to have a regular pay-packet.

Jonathan’s house parents had ready access to his full and very detailed file, mostly completed by me, and a summary page was placed on the refrigerator.

The first indication of a problem started not long after. When I picked up Jonathan for a home visit, I was told he might be hungry, or perhaps unwell, as he hadn’t eaten his dinner the previous evening. Nor had he eaten breakfast that morning. He seemed to just not be hungry, they said.

That was so unlike him. He’d always eaten well, and with great pleasure, when he lived with us. When I offered food during that weekend he ate heartily and with enjoyment, as always. He was therefore not sick. Perplexing.

Every visit there was talk of him not eating – refusing breakfast or dinner, or eating just a little. I started to become concerned and made further enquiries.

It turned out the staff ate with the clients, and the staff chose meals they thought young adults would like – pizza, steak, hamburgers and so on. In reality, they prepared meals that they themselves enjoyed.

And of course, the staff meals were free, part of the salary package to entice workers … but also of course actually being paid for by the clients’ funding packages.

Wait! Alarm bells were ringing.

Jonathan had no lip closure, and needed mouth support; he had problems with chewing. He needed his food to be finely chopped or minced, and each mouthful to be accompanied by mashed vegetables. As for a piece of steak? Impossible, unless it was very finely chopped and accompanied by mash of some kind.

Baked beans on toast? How could he manage that? Was it mashed? No. Most of it fell out of his mouth. Not pretty, no. But they had to help him – by preparing moist minced food that he could keep retained in his mouth.

That was their job! Wasn’t it? Apparently not everyone saw it that way.

There was no way he could eat those foods the staff were enjoying. He was hungry. So were several of the other young people in care. He was refusing because he could not manage to eat steak or pizza, or spaghetti ….

As for breakfast …. No, they had not been following my recommendation of Weetabix with bran and milk – which he loved.

They would definitely NOT give him that. No, they would NOT cater for his individual tastes. Did they not have FOUR to look after? They couldn’t make four breakfasts.

How hard is it to put two Weetabix in a bowl, then add two tablespoons of bran and plenty of milk?

Pointless to remind the staff that I also had had four children to look after, for years, but had managed to cater for textures he needed, and variety of food as well – and I excluded eggs.

Yes, their breakfast plan included eggs. Eggs? Had I not specified that he not be given eggs as he could not tolerate them?

Oh no, I was told, he wasn’t getting eggs as such – they were giving him omelette. I pointed out that omelette was made with eggs. Oh yes … so it was! And quiche or frittata for dinner – eggs again! Baked egg custard with peaches for dessert – eggs again!

They thought they were disguising the eggs. How little they knew him. He could tell there were eggs in his food. He might not be verbal, but he was not stupid.

I was shocked at how little they understood – and yet, it was all written down.

Oh well, they had to follow the directions from the chain of command, didn’t they? A new young dietician had set up a food preparation plan to guide all these new staff. The one from the institution was no longer employed under this new Group Home system, for some inexplicable reason.

I contacted her and asked for a copy of her meal plan. It included eggs – they were very nutritious, she explained to me. Really? I was in my forties and needed to be told that eggs were nutritious?

She, of course, was the professional, despite her youth and inexperience. I was no longer even a foster mother; I was simply the “person responsible”, whose signature was needed on various forms.

In turn I explained to her that they were not to be included in his diet. He would not eat eggs. He would simply refuse and be left to go hungry. She made the adjustments I asked for.

Many discussions were held. She agreed that my diet plan, included in Jonathan’s folder, lacked nothing. All food groups were complied with, calorie input was satisfactory, and there was plenty of variety. She even praised it.

But nothing changed. I insisted his chart on the fridge should highlight that he not be given eggs. It was highlighted – but no notice was taken of the new document. If I asked once, I asked at least a dozen times.

My very detailed diet plan, drawn up from what I had been doing for ten years, remained in the file, obviously disregarded, despite initial assurances that it would be followed because after all, I knew him best.

They kept it, of course, as proof I was “being listened to”.  It was like the best chinaware in the cabinet, to be taken out and looked at on special occasions only.

His file was not opened regularly, if at all, by the house staff. They were VERY busy, as they had four young people to look after.

I understood what it was like to be busy. I’d “been there, done that”, even while I was working at the school for severely disabled children. All the children there were fed lunch appropriately to their needs, and none ever went hungry. All my own children were fed with hearty and nutritious meals each evening. I spent my evenings preparing Jonathan’s food for the following day at school, all minced and mashed appropriately, with a texture he could manage and enjoy. Yes, I knew what it was like to be busy!

Of course, these “discussions” ranged over a period of time. I asked for Jonathan to be weighed weekly and a report sent to me. That was frequently forgotten, or perhaps they were all just “too busy”! I had numerous meetings with the staff and their superiors, as did other parents.

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It was finally agreed that the house parents should supply their own meals, and eat separately from the clients, and they should focus their time and attention on feeding the clients in a way they could manage – slowly, and with appropriate foods and textures.

Of course, these staff moved on as soon as they found a better job. Consistency of care was overstated and not well understood or practised.

New staff arrived and were very quickly trained for this important work. They were all “happy and excited” to look after our young people.

I could not be there all the time to see what they were doing. We now brought him home for the weekend just once a month - we all needed to make an adjustment to this new way of life. To a large extent, I had to trust … and I had to trust that when they said he was well and happy, and eating well, that was true. But what did “eating well” mean? What was their criterion? They really didn’t know him very well, despite what they thought.

I had learned to not trust what people said.

Why was everything so hard?

But of course, this was just the beginning!