Short breaks/respite care
Posted by
Leanne
on 15th February 2010
at 18:18
Hi Robbie
I get respite care for Alistair through Barnardos.. I was referred to them via my social worker and to the social worker from Alistairs school.
I had no idea anything like that was available or that it would prove to be so valuable.
Initially all that we wanted was a child minder experienced with autistic children who would be able to look after the children if we (myself and Martyn) wanted to go out etc. Social services were unable to offer this but suggested Barnardos.
They initally suggested shared care and offered one Saturady a month with the view to overnight care if we ever needed it.. ie if we were ill or wanted to take the children away. The couple we were introduced to already had experience caring for an autistic boy and were wonderful but after a very long introduction process they decided they couldnt commit to it.
We were then, after a long while offered a sessional support worker who would take Alistair for 10hrs per month and do activities with him. This has worked out really well because the sessional worker is exceptionally experienced working with autistic children - she used to teach at the school Alistair now attends and is a special needs language teacher and also is a special needs swimming teacher.
The only downside of this is that she is not allowed to look after him at either our home or hers so sometimes when we take the other children away if the weather is horrible its difficult to find something for them to do.
I think in the future some sort of longer term respite care would be wonderful because now the children are getting older the things we want to do with them are further afield and can't be done in a day.
Leanne - Community Champion
Posted by
Josie Barnshaw
on 15th February 2010
at 21:17
Hi Robbie
Somewhat similar to Leanne I accessed respite of 4 hours per week for Tom through Social Work who subcontracted the task to the Strathclyde Autism Society who take him every Thursday evening for four hours. When this first started about three years ago it also included a school holiday club a few days a week but there was an upper age limit which was 11 which he quickly reached (he only accessed this during his first six months with them). The service is paid by the Social Work Dept and I have to pay the fees for the club he goes to (at a local leisure centre) and give him money for MacDonald's (which is where they take them before they go to the leisure centre). If they take them to the cinema I have to pay for that as well (and also his carer's cinema ticket). I dont have a problem with this as his DLA covers it.
The carers who look after him during this time do so voluntarily and consist of a mother and daughter who have a son/brother respectively who is also on the spectrum and the same age as Tom, in fact he and Tom have become quite friendly.
I was offered longer term respite through the Barnardo's Intensive Home Therapy team who worked with us for a while, but I didnt feel that this would be appropriate/helpful as by the time the option became available Tom was 12 years old and I felt it would do more harm than good.
Josie - Community Champion
Posted by
nuttykellz
on 16th May 2010
at 15:13
hi Robbie
I moved from Dorset to Somerset about 6 years ago, where we had respite care and support from disabled childrens social services. In Somerset I have been unable for the last six years to access anything at all no matter what I try disabled childrens team have said he doesn't meet their criteria and that was after 3 referals were sent and i self refered after my son assaulted me & involved the police being called. Same kind of thing from CAMHS even after they were involved with one of my other sons when he went into voluntary foster care because of the problems with Jack & his AS/ADHD/Dyspraxia. I had to fight the local education authority when we moved here as they refused to take any notice of his Statementing from Dorset & threatened to take me to court for refusing to put him in school until they offered a suitable alternative support as they were unable to provide a school with a specialist unit attached which is what he had been attending in Dorset, 6 months of fighting & a letter from my local MP later he got full one to one support.
We all suffer greatly without respite & shouldn't have to continuously fight for even the simplest things.
kelly
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Posted by
Robbie de Santos
on 15th February 2010
at 16:48
Hello everyone,
I hope half-term is starting off well. I just wanted to find out about your experiences of accessing short breaks/respite care - I'll call them short breaks from now on.
As you may know, Aiming High for Disabled Children provides funding for all local authorities across England to provide short breaks for children with disabilities, having made £280m available in local authority grants over the period 2008-11 specifically to improve short break services. The Government is now considering placing a legal duty on local authorities to provide short breaks, so I am keen to gather evidence about how important short breaks are for families, but also find out how they can be improved.
If you have a chance, it would be really great to find out:
To get you thinking, here is some findings from research carried out by the Every Disabled Child Matters campaign and the children’s charity Action for Children:
The Social and Economic Value of Short Breaks
The Every Disabled Child Matters campaign and children’s charity Action for Children have collaborated with the New Economics Foundation (NEF) to produce a research report titled The Social and Economic Value of Short Breaks. The report shows that substantial cost savings can be made through sustained funding for short breaks for disabled children and their families.
The social value of short breaks is well established. In addition to this, the report quantifies the economic case. It demonstrates that the delivery of short breaks to all families who need them could result in an annual saving of approximately £174 million to the state. NEF calculate social and economic value by looking at the long term social outcomes that services work towards, then quantifying the economic and social value that the impact of these outcomes would bring about.
Some of the impacts that the short breaks model forecast included reduced placements for disabled children in residential settings, reduced demand on health services as a result of parents’, families’ and carers’ stress, reduction in GP visits, reduction in sickness absence, and decreased cost to schools of educating siblings with behavioural and emotional difficulties.
The analysis of Pathfinder data returns found that access to services is still limited, with currently only an estimated 21% of disabled children receiving short breaks services. Services for disabled children are currently funded through Aiming High for Disabled Children (AHDC) until 2011.
The three main political parties have said that they are committed to continuing the work of the AHDC programme, but have not yet confirmed whether funding for disabled children will be protected in the face of public sector cuts.
The full report can be viewed here:
http://www.actionforchildren.org.uk/uploads/media/36/9163.pdf