Kadie talks about her experiences of caring for her son, how much time she puts in to the rota and the impact of Covid

I've been I I was told when Mark was 10 that what I was doing for Mark was over and beyond a normal parent when that by a social worker in a hospital setting, which was the first time I really thought about actually how how much more I was doing than my peer group A parent. Um, around the same time, my son was deemed to not be able to be educated locally, So he was sent off to, um, and out county placement because it was before inclusive education. And so, um, that was quite challenging, because that's not what we wanted to. We had Children expecting to have them in their lives full time for a longer time than so

He was a He was in residential school during term time. He came home at weekends, and then he started the personalization agenda because it just happened to coincide when he was 18 and there was Trans. We fought locally

We were working with partnership with the County Council, and we started to get, um, team. Um, key workers and transitions all happened when he was 18, so he's been on the forefront of all of the changes and he was really lucky to get a good budget and and get his dreams of moving. He came home at 18, moved into his flat when he was 23

In that time, we'd done a circle of support. We'd done transition. Um, he he highlighted his goals of living independently, having a car which we got through motability and things like that and he's cared for by a team and my my route my life alongside that was when I was 50

He moved into his flat. I knew that then I had 10 years where I needed to get him settled and then move it over to someone else to do. But at that time, when we set up his team, all the organisations out there that were more institutions and they hadn't really taken on any kind of personalization agenda because it was like early doors and it was really early

But now I know because I've started to investigate that most organisations are now run by people who were at the forefront of circles of sport and all that kind of stuff and they're much more person centred. As Joe's found out with her her provision. So I'm and and covid really highlighted it to me that I really needed to get on with my contingency planning because it went from Oh, I need to do this in the next few years

By the time I'm I'm now 62. I wanted it by the time I was 60. To be like your mum, Abby

Just Mum. Not carer. But I'm on call every other week

I'm doing shifts. We We're two people down. I'm you know, I'm part of the at the moment, Um, and it's very confusing for my son because he thinks he's going to come home and not come home and all this kind of stuff and covid, you know, I had to lock down with him during covid because two of his support workers got covid

So I was self isolating with him. So he's had a really unsettled year, and in that year, we were encouraged as carers. I don't know if you came across this to write some kind of contingency because one day you might be well, the next day you might be on a ventilator, so I started that process

Um, and I've completed it and my journey now is to transfer his and two over his team to an organisation so that I can sit back. But I've now got to broach this with social care because he's had the same budget now for 14 or 15 years. No uplift for pensions, no uplift for cost of living

Um, and I've now got to find 15% more to have an organisation. Take it over. And although I've always said to them, you have me for free and that costs you about 15% because I'm my head, I'm a finance and HR person In my professional life, I've made them aware no one's really acknowledged that

And now I've got to try and and also we've not had annual reviews. They've been pushed out. We had a review just before Covid hit the Social Workers now left after a long period of sickness

So anything that was said or done at that is now lost, and we're going to have to start a fresh, and at the same time I'm gonna say I've had enough, so that's where I am and I'm I'm really worried because taking this move, although I know the rules are the rules. The law is on my side. If he's had this care provision, they can't take it away from him

They might try to rehouse him or whatever might make life easier for them. And I I feel like there's gonna be a battle before there's clarity.

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