A carer from Hertfordshire shares her experiences of information and advice in relation to her son who has a learning disability.
Transcript
Yes, Basically, you have a phone number or a couple of phone numbers that you call, and, um, it's a little bit hit and miss as to who answers and whether you actually get through to the person you want to get through to In the end, Um, there is a an organisation or a department called Hearts help with which now, which is supposed to direct people, um, to different organisations and support. Um, but generally you have, um, we we have the sort of Children's or the 0 to 25 phone number to get through to. There are various ways of getting through, I suppose, is what I wanna say. Although I don't think any of them are particularly efficient
OK, tell me a bit more about that. Um, I'd be really interested to find out a little bit more about that. And what what what happened there in terms of finding that it was hit, hit and missed? Um, I suppose it depends which number you call
Sometimes you call a number, and they the receptionist tries to put you through to the right person or department. Invariably, that person is not available, so they say that they'll take. They'll send an email to that person, and you're supposed to get a call back within
I think it's three days. Um, invariably, that doesn't happen. Um, when you phone the direct numbers, like for the 0 to 25 team, nobody really picks up
You generally just leave a voicemail and somebody might get back to you. But, I mean, I called last week and I left a message. Nobody got back to us
And what were you calling to find out what was the purpose of your call. Then somebody told me that there was a specialist learning disability team and, um, thought that this would be useful for my son to be referred to. I phoned them, left a message
Nobody's got back to me. Right? Right. So just going back a bit when you first started and it was under the social care fund, tell me a little bit about that
So that experience of when I guess you first had to Well, that when Leon was baby, OK. And, um, we first asked for respite. Um, at that time, I mean, obviously, that was 25 years ago
It was a very different. At that time we had a named social worker, um, given to us and they helped by getting us direct payments for respite which were used in various ways. And also they gave us, you know, information about organisations like sh like special needs playgroups, special needs dentists special needs, you know, different departments
So that's where you got your information was from the social worker. Um, I think the problems occurred when social workers le left or changed for some reason. And there wasn't a a good handover
There's often gaps. Then, at some stage, we got told he's not under a named social worker, so it you were sort of left to the mercy of the call. Uh, the duty worker
Um, I think there's a lot of a lot of problems with communication, and it's been an ongoing issue that we've talked about for years and years where we talk as parents to try to make, you know, make communications make contact, but that but that is often not coming back to us in a a sort of a timely manner. And it's definitely not efficient because quite often, social workers don't know what is out there. They don't know the what advice to give us because they don't have it in the first place
It's me. I've got to say that I, as a parent, have found out much more information and guidance from other parents at, like, support groups. That has been invaluable
And, um, if the social workers were to sort of come to those group meetings or, you know, uh, even sort of bother to find up to date information, they don't have up to date information. I think that's a lot of the problem. And do the social workers come to the to see the support meetings at all? You get the occasional one, but they usually do it because they are genuinely interested
And one do their job well, right, OK, they are really fantastic social workers out there who you know, have pride in their job, and they try to do things well and so they'll know when when a parent says to them, Oh, you know, we've got this great group come along, they'll turn up. But then you got you know, other social workers who just stick to doing their their actual prescribed job. If you like I'll just also say now you've got a lot of who are not actually trained as social workers
They like family support workers or some other title like that. So they're not really trained in what we need them to be trained in. What do you need them to be trained in? To be knowledgeable, to be understanding of people's situations, to be creative and not necessarily stick to the prescribed rules? Well, I don't want to say rules, but the the way we've always done things is not necessarily the way we want to do things
So if we always do things, you know that phrase. If we always do things the way we did, we we'll always get what we got. Yeah, yeah, the world is moving forward especially very
It's been very, very changeable in the last 20 years for people who learn disabilities and their families. So we need the social services social services to to be changing along with us to be having these more modern ideas. So, for example, I have, you know, social care, saying to us things like, Well, Anne Hill saying to us things like, Well, why doesn't Leon want to go to a day centre
But you know that to us is, you know, coming. We've come through this world of inclusion, if you like in the last 20 years. So why would I want to send him to a day centre, go and play bingo with buttons? Um, when he could have a real you know, he is having a really good life
Um, and social workers are trained to know about day day centres are a solution for what we do with people with disabilities instead of then learning about inclusion and how to make sure that we're, you know, that we're not segregated from the rest of the community..
