Jacky works for 'Access Social Care'- an organisation which provides free legal advice to people with social care needs, helping to achieve a better quality of life. In her work role, Jacky supports parents, carers and young people who are planning for adulthood to understand their options and to uphold their rights. Jacky is also parent and carer to a young man who is autistic, and has a learning disability. In this video, Jacky shares about her own experiences in navigating planning for adult life on behalf of her own son, Thomas.

First of all, we, we had the adult social care transition assessment at 17. Because I knew that we could have that, and I knew that we wanted, needed Thomas to move from living with us to living somewhere, and it needed to be nearby, and it was gonna be quite a hard ask cause he needed to live in a house on his own. He needed to have a bungalow, he needed it to be quite a robust house, um. So it wasn't gonna be instant, um

And that assessment was pretty good. And then We There was one, you know, you read all of the stuff about there shouldn't be any gap between the Children's Acts and the Children and Families Act and the Care Act. But then you, you get told, oh, well, no, that doesn't include respite cause that's Ofsted registration

So, you know, his respite was all gonna stop the day before his 18th birthday because he was at a specialist respite centre that he just down the road that he would have overnight respite once a week and things. And um You know, and you're like, but it says here, and they're like, well, there's lots of those sorts of things that you. You sort of, you know, the theory says there won't be any gaps and that children's services will continue until the adult services kick in, but then there's lots of bits that they say, you know, and friends with children who are under family link would find that they were suddenly

Not going to their family link career anymore. Because shared lives. And the Family Link carer had to re-register and go through the whole, you know, 6 months of assessment to be registered as a Shared Lives carer, even though they're doing that for, you know, they've been working as a Family Link carer for 8 years or whatever

So those sorts of things always take, you know. Um, don't follow what you think that the law says, but And then, um, But we did, so we agreed it in two batches. We agreed, you know, we found a new options for respite

We carried over the direct payment for the PA that we had who'd come and help us at home. Um, and then we were going to plan. OK, so what's next? How can he move out of home? And we just started

Working on that and you know, this slow dawning that all of their cheaper options weren't going to. Work, so we were just again starting to think about that and then they set up a 0 to 25 service. Because Everyone had said transition was so poor, so

Children's services were going to go up to 25 and there was going to be a transition team. And um We they immediately did a pen picture of Thomas and when the adult support planner had already agreed that we weren't going to do a pen picture. Because um there wasn't a provider set out there with a house that was gonna meet the need, and he was, you know, he was more complex, um

But when we moved into ch back to Children's, they did it anyway. Um, and you would have thought that he could have only lived at Broadmoor. It was so

Horribly focused on his deficits, um, and nothing about him. So we were busily complaining about that and getting them to withdraw it of the portal which we've never given them permission to put it on and. Um, And we just got it rewritten anyway, just to help them understand him more

Um, And um Then I think we're sort of 18 months on by then and still nothing sort of happening. And then they disbanded the 18, the 0 to 25 team because it wasn't working. So we went back to adults and luckily we had the same support planner

We did say, look, can we have the same support planner at least and so we got um. We got our lovely sport planner back and. Sort of started going again, just getting back to the basics and then the CHC DST caught up with us

And so He became under the DST and CHC were awful, absolutely awful, um, and I'm still, you know, 4 years on trying to sit down with them to really explain why I think they're so awful, but um. The care coordinator is amazing. She's a really experienced learning disability nurse

She's got about 130 complex people on her books. But, so when he transferred in CHC, the, the social worker, the support planner was trying to contact her so we could have a handover meeting, and we couldn't get hold of her, we couldn't get hold of her. couldn't get hold of her

I tried ringing the CHC, you know, team, and eventually had to go through pals to get anyone from CHC to reply to me. And the manager phoned me and said, Well, you've got the decision letter, what else do you want? And I think they're just so used to it being an argument about who's paying for the care home or the nursing home. They don't really, they, you know, and I said, but we're waiting, we need to do some planning

He needs to be not at home, but living somewhere else, who's gonna help us all, we don't have social workers, you just do it. And I've got it in writing, you know, it's just like. Um, and I said there's this guidance which says there's a 6 because it's personal health budget, there's a 6 point facilitated discussion and there's, you know, I need a health and support plan for him that we need to agree with a budget and

 

Comments
About text formats
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.