Annie’s battle echoes Elizabeth FitzRoy’s more than 60 years ago.

When Elizabeth FitzRoy opened our first home more than 60 years ago, she had already spent years trying to build a better life for her son Michael who had a learning disability.  She had adopted Michael as a child and was horrified to be told that because he had Down’s Syndrome he would fare better in an institution. At FitzRoy, we know the battles that parents of disabled children have to fight to get the right care and support for their children throughout their lives, and we are here to support them.

Recently, we met with Annie, the mother of Rothko who we’ve supported since 2011. She shared her experiences as a parent of a disabled child.

“Rothko was our first child, and when he was four months old we saw the symptoms of his condition starting to show. He was not meeting developmental milestones and he was having severe seizures.  He lived at home with us until he went to an amazing specialist school, but we found transition after school very difficult. When Rothko turned 15, we were advised to start thinking about what we wanted for Rothko next. We wanted to keep Rothko at home with us for as long we we could, but we knew that in time we would need to consider alternatives. The council gave us a list of care homes that I worked my way through, but none of them were suitable. Some were not operating any longer, some were elderly care for dementia, and none would have suited Rothko’s needs.

“I found out about FitzRoy by accident. Someone who fundraised for FitzRoy told me about a care home where he was so struck by the atmosphere, as it was different to other care homes. I visited Silver Birches, our closest FitzRoy home, and we knew that it was right for Rothko. Although they didn’t have any places at that time, it didn’t matter as we planned to keep Rothko at home with us for up to another 10 years.

“When a place came up at Silver Birches six months later, it was the hardest choice we ever had to make. Although this felt too soon to make the move, it was one of the very few services close to us. Our biggest fear was that if we waited until we couldn’t manage at home, he could end up somewhere hours away or that wasn’t right for him.

I met with the FitzRoy team and we said we would take the place if he could come home at weekends. FitzRoy are incredibly good at tailoring a care plan for the individual, so they were able to accommodate that.

“We didn’t want to keep him at home with a complex care plan that would be hard to maintain and where he would be quite isolated, and then suddenly find we couldn’t cope and perhaps have to accept the first place that came along. A few years after he went to Silver Birches, he stopped sleeping at night. He never slept more than an hour or so, and we could not have sustained that at home, so we were very thankful that we took that decision.

“FitzRoy’s Silver Birches is a wonderful place. The size of the flats is perfect with only five people, their food is cooked from scratch and the facilities are amazing. We have a very active parents group, we’re fully involved in any changes,  and the staff are wonderful.

“What particularly impresses me is how Rothko’s day is geared around what he wants to do. My greatest fear when we started looking at care homes was where the residents were all gathered together in the lounge in front of the television. That would have been awful for Rothko.

He is very lucky he has two families – us, his parents and brother – and his FitzRoy family.

“Rothko being settled with FitzRoy is such a relief. One of the biggest worries for me is what will happen when I am no longer here to look after Rothko – it haunts me. It is always with you, it is a constant,  but you don’t want to talk about it.  If you asked me what was in his best interests, it would be to predecease me, which is a completely contradictory and complicated emotional side of being a parent.

“When parenting a disabled child, you have to fight for absolutely everything, education, medical care, funding for places, therapy, equipment. What came as a shock to us is that it continued into adulthood, even though at FitzRoy he is settled. Until Rothko was 33 years old, he was funded by the NHS through continuing health care. He has had no changes in his health circumstances, but he no longer qualifies, we have been told he’s been moved over to social services. Social services said his support needs are too complex for them and he should be funded by the NHS. This battle has been going on for three years.

“Governments come and go and councils change, it is about thresholds and criteria changes, the goalposts move. I do think that there should be some sort of lock in place for people who have long term conditions which are never going to change.”