Some parents we interviewed received respite care (or short term breaks) that was either provided by social services or the parents themselves, who received Direct Payments (see ‘Resources’) and arranged their own support. Some parents found Direct Payments too confusing and preferred to have support provided by social services.
Kirsten talks about how she manages Direct Payments.
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Age at interview: 34
But through the social work department we get a direct payment from June for 14 hours care a month. At first we had a home help but that wasn’t working because she could only come at a scheduled time and she was trying to dust and hoover as we were trying to get ready to go into school in the morning so that didn’t work. So they got us a direct payment so I am responsible for employing carers. They have to get a disclosure, you know I have to go through disclosure tests but I am responsible for employing them and the payment, paying their wage and their tax and National Insurance. So one night a month I have to sit down with Inland Revenue forms and fill it all and keep all that up to date and every three months the financial forms all go back to [area] to check that it has been used for the right thing. But it gives us the flexibility of, if we have got an appointment paying a carer to come with me to the appointment but somebody to stay at home with the girls because to drag everybody to hospital appointments and sit in the waiting room, that is just a nightmare and it is not fair on them the amount of appointments they would have to go to.
It means having somebody like yourself here or a professional out to the house to see Andrew. Then again I can change the carers hours to say well can you come extra or can you come early that day. It gives me the flexibility to pick who are the best people. We found out that young people are the best, like teenagers, students, because they have the most energy. They don’t have preconceived ideas of what a child’s behaviour should be. Some of the wacky things he does are just cool to them. That is okay. Whereas an older person, would be oh no, no, I don’t think you should be doing that, and no, no that would be dangerous to stand up in that stool Andrew. Where it is not dangerous because he won’t fall off. He is not allowed to go to somebody’s house or climb up on the furniture but he knows that is his and that is his climbing stool.
We got that because he used to climb on the worktop and worktops are not allowed. So young people are okay. They are flexible about that kind of thing. And they have got the energy levels and they will run about or jump or they will go on the trampoline or play with the balls and get him interested in it. They will have a go on a scooter, if he is on one scooter they will grab another scooter and go on it. So that definitely works the best. And if he has got a notion again to be on the computer then again young people are more comfortable. So that has definitely worked better.
The one difficulty with the direct payment is it is a small amount of hours so it is not enough to be somebody’s main job. So somebody whose is looking for, I suppose a working wage and is looking for a full time job it is not any good. It is either maybe retired people or students that are available at the times we are looking for. And certainly to students that is great because they are available during the holidays and they get plenty of holidays so that works out and he loves young blondes. So … [laughs] so he is very, very cuddly towards one of the girls, actually has been with us for three years and she is very much part of the family. That is brilliant. That has just made such a big difference that that is someone I can now leave him with.
Technically with the direct payment there is hours built into it that I can off to the pictures or go to the hairdressers. Realistically I don’t. When somebody else is here, if they are willing to play with Andrew then I will go and get some housework done, or I will play with Andrew and they will go and go and tidy up and put the washing away. Maybe it is partly my personality but I don’t see me swanning off and saying oh well you are here I will go and do such and such
Those parents who had some form of respite care were allocated between 2 hours to 10 hours per week. The form this took and the way in which parents used it varied. Some care-workers took the children out to different places. Some children went to a weekly play scheme funded by social services and one child had just started going to stay with another family for two nights a month. This latter arrangement was important to the parent because she was single and worried about who would look after her son if she became ill.
Sandy banks up her allocated hours so if she is having a really, really bad time she can ring...
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Age at interview: 38
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And you mentioned having respite care. Have you had respite all the way along?
We used to get an hour a week, sort of four hours a month probably from quite early on. I think it was after Adam was diagnosed as well though, so we were just getting four hours a month which we have had increased to two now.
Two hours a month… a week, yes, sorry two hours a week. Yes. So what I have been sort of tending to do is use those when my husband has been away working or if I may be go out for a evening or something then he has somebody to help him. But I think our main problem is we weren’t actually using those hours to go out together. So… I would strongly recommend if you get any respite care go out with your other half and don’t let that slip, because that was our problem.
Do you have direct payments or..?
We did look at direct payments and found it all a bit confusing with how you work out all the sort of monetary side of it. I’ve got people that would come and babysit for me but we actually use somebody from Social Services and it is somebody the boys … she actually works at the school where the boys go to as well and so she has known them for sort of five years, so I know she can cope. We could use two people at the same time as well which is still …
Is that within the two hours?
Yes, yes, because we have got the two boys, but generally [person] who comes like, should I have said her name. Is that all right? [person] who comes out to us she is absolutely brilliant and she can deal with both boys at the same time. And at first I was thinking God it is like having a sergeant major in your house but she has actually taught me a lot as well, and taught me that I do have to be very firm with routines and she is fantastic. She can get Adam to brush his teeth no bother, whereas I have got him in a headlock and really struggling with him, sort of half sitting on him, headlock and brushing his teeth and she says to Adam, “Open your mouth”. And he is brushing them for her. So I would love it if she could move in with us. But …
Is two hours a week enough? Or would you like more?
I suppose it is. Because I would like more, I suppose obviously everybody would like more wouldn’t they, but I tend to bank it up and the nice thing about [person] as well is if I know that I am on my own with them and if I’m having a really, really bad time with them I can actually ring her up and she’s pretty good at just coming out and sort of coming to me at the last minute as well and I just try and sort work my hours and try and bank some up so I’ve always got a few in hand.
A male carer looks after Janes son each week in an arrangement which has been a godsend.
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Age at interview: 47
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I have a carer for ten hours a week, who takes... He is a male carer, a young man of 24 who is very like him, but not diagnosed, but like him in the sense that he is intelligent, he shares the same interests, he is patient and calm and he facilitates Joseph’s personal development. That has been a godsend, because not only has he got someone to talk with for hours on end about the fine details of something which I have no idea about, but he has got a male, he has got a male to talk about male things with, he has got a male to go out with and he has got, I don’t, he doesn’t describe it as friends, he describes the people he knows as acquaintances. He is happy, he is relaxed and he is safe. And the carer has come out of the scheme for direct payments for children with disabilities.
Experiences of respite care were mixed and it was clear from parents’ stories that there was an awareness of a limited pot of resources. It was also felt by many parents that chosing a person to look after their child in their absence wasn't easy. Few of the carers available had any training or experience of Asperger syndrome or Autism and were not equipped to deal with a child who might suddenly ‘freak out’.
Dot explains how the respite you may be given is not necessarily what you need and how it is not...
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Age at interview: 48
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I get three hours a fortnight. I get it from the council, from Social Services. Again that is a bit of a sore point, because I imagined that you would ring up a number and say ‘can I have respite?’ but you don’t, you have got to get a social worker. You have got to then go through the whole family history thing and answer millions of questions and at the end of it, you might get respite. But the respite you want is what they can give you rather than what you might need. So say for instance if I wanted to go out of a night I couldn’t. I can have respite once a fortnight for three hours on a Saturday at a certain time. So I say yes, but, then I have got to rely on the person being okay; with Asperger's again he can’t deal with changes so maybe two, three people at the most I can cope with for him.
If he doesn’t like them he won’t go out with them. So, they haven’t got a lot of respite workers but they are trained which is good. When they have used sessional people sometimes they haven’t even known what Asperger's is so I just have to send them away again, because Joe won’t go out with them and so it is patchy, very patchy. Sometimes I have gone weeks without what I was entitled to because there isn’t anybody to do it. They are either off sick or the team is too small or they have advertised for the jobs, or you know, it just doesn’t happen.
But I know people who have direct payments but again you have got to find someone, the system is really cumbersome, it is a lot of paperwork, getting different bank accounts. What I would like is a system that works controlled by the Local Authority trained by the Local Authority. I don’t want the responsibility of having to having to employ someone, having to pay wages, as well as being the carer. I want them to do it. I want them to find the right person and then give us a choice of when we could have them.
So yes I get respite but I use it for, it is not for me, it is for him. I use it for amusing him, playing chess with him or taking him off for a walk or whatever he feels like doing, trying to continue with the swimming because I can’t swim. But I have to take what I can get really. For me personally, for my needs, no, because what I do when he has got somebody is I go to the supermarket without him or I pay bills or do something like that.
When I was working it was much harder. I would be running round trying to do everything in three hours. Now I am not working it is easier but it is still not a lot, three hours a fortnight.
Mike describes how you have to make out like hes the Tasmanian devil, you have to make out hes...
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Age at interview: 55
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You talked about him growing older and puberty. Were you offered any support when he behaviour became challenging?
I suppose I better be totally honest and say that we did get a bit more support than what we had previously because it is a bit like, this will be the same with any Council or any authority in the country, when a child is okay they don’t need to do anything do you, they are okay, they are not a problem. The minute they become a problem then you have to then intervene and that is what happened with Andrew. He developed this challenging behaviour so the social worker came on the scene so there was like a little bit more respite offered you know. I mean I am only talking about like four hours a fortnight they would take him out and you had four hours to yourself, you know, to do something. Things like that.
But that is the main, I think that is the main bugbear for parents of autistic children is respite support because you do need, you have got to a have a rest from him, you know, I am not asking like, Andrew needs constant support. Other kids who are Asperger's can have a conversation with you, you will (probably?) see them afterwards, and probably interview them and they will chat to you and you think some people say what is wrong with him, but you know that there is something because their behaviour does display itself later on. But no, we got a bit more support but you have to fight for it, you know, you have to make out like he is the Tasmanian devil, the child, you have got make out he is awful and because otherwise you won’t anywhere. You won’t get the support you need, you know and that is just for a little three or four hours a week you know, so … yes. I have got to be honest we did get a more support but it is nothing to start putting on the front page of The Times, you know so….
Some parents said that they would not use respite care because they didn't need it; they thought that nobody else could look after their children or that it was their job. One mother said that there was “an institutional kind of thing” locally but she would only want her children to go to another family so that it’s like “going to an auntie or uncle”. Another mother thought it would have an “adverse effect” on her son. Many parents felt sure that their child would not want to be looked after by someone with whom they weren't very familiar. Where there was someone who the child would accept, a relative or a good friend, parents were tremendously appreciative of the help they were willing to give. Other types of support, such as family and friends are discussed in ‘Factors that have helped’.
Last reviewed July 2017.
Last updated November 2010.