Stuck at home

[pollypop]

Hi All

Just wondering if anybody knows if there is anyway of getting a support worker for mt daughter who is 14 and has Aspergers. She has a statement and gets fulltime support at mainstream school and seems to cope well to all those on the outside. She does this by mainly denying she has Aspergers and doing her utmost to fit in. As a result she often comes home from school stressed, darined and full of anger at all of us at home. I am a single parent now after splitting up with my husband 3 yaers ago after 15 years of marraige. We've had so little support with our daughter over the years and it seems like you have to " develop your own strategies " to cope as thats what i was told we'd have to do when she was diagnosed at 2. Have done my best but often it was just me developing and hubby quite happy to let me take the load...couldn't do that forever and I eventually burnt out and we separated. life is a lot calmer and eazsier now but my daughter really dosn't go out much and we rarely get a break from her. She used to go out with a " Big Sibs " prog which was run by volunteer students from Cambridge and it was great and she loved it but it was vcery hit and miss and often the students were on hols or studying. We did have a Crossroads worker for years who did 2-3 hours a fortnight with her and we got a little time out but thats finished now. How do direct payments work and how would I go about applying for them ? How do you decide who to employ and are there any checks or regulations in place to protect you and the young person? Cheers,

[oxgirl]

Sorry, no advice for you, but I have this problem too. My lad is 17 and has no friends and limited independence and thus has nowhere to go and nobody to go with. He goes to a youth group, which I drive him to and then wait around for a couple of hours until he's finished. During the holidays there are a couple of activity days he goes to, but he's getting a bit too old for those now really. Again, it means me hanging around waiting to pick him up as they are usually too far from home to make it worth coming home so it's no break for me really. Don't know about Direct Payments, but I've never really looked into employing someone, not sure now many people there are out there willing to take a 17 year old out and about, where do you find these people?

 

~ Mel ~

[westie]

Hi, I think looking for direct payments info on your local council website would be best way to go about finding out how to apply, I think you have to have a social services assessment (of yourself as a carer for your child).

There are some general information about direct payments here: http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10018517

 

I think that you actually employ someone and it can be anyone even a friend to take your child out, (not someone living in same house though) and this can bring with it responsibilities such as paying tax/ NI potentially. I think I remember a friend telling me they used a service like crossroads, and then later on I think a TA from the school agreed to come and spend some time with them for a couple of hours a week. There may be local support groups in your area who may offer a befriending service, or who can give you some more advice and help as other parents may have been in same situation, you could give them a ring.

 

Or use the NAS service directory. Good luck, sounds like you could do with a break. and your daughter some opportunities to get out X

[pollypop]

Hi, I think looking for direct payments info on your local council website would be best way to go about finding out how to apply, I think you have to have a social services assessment (of yourself as a carer for your child).

There are some general information about direct payments here: http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10018517

 

I think that you actually employ someone and it can be anyone even a friend to take your child out, (not someone living in same house though) and this can bring with it responsibilities such as paying tax/ NI potentially. I think I remember a friend telling me they used a service like crossroads, and then later on I think a TA from the school agreed to come and spend some time with them for a couple of hours a week. There may be local support groups in your area who may offer a befriending service, or who can give you some more advice and help as other parents may have been in same situation, you could give them a ring.

 

Or use the NAS service directory. Good luck, sounds like you could do with a break. and your daughter some opportunities to get out X

[pollypop]

Hi, I think looking for direct payments info on your local council website would be best way to go about finding out how to apply, I think you have to have a social services assessment (of yourself as a carer for your child).

There are some general information about direct payments here: http://www.direct.gov.uk/en/CaringForSomeone/MoneyMatters/DG_10018517

 

I think that you actually employ someone and it can be anyone even a friend to take your child out, (not someone living in same house though) and this can bring with it responsibilities such as paying tax/ NI potentially. I think I remember a friend telling me they used a service like crossroads, and then later on I think a TA from the school agreed to come and spend some time with them for a couple of hours a week. There may be local support groups in your area who may offer a befriending service, or who can give you some more advice and help as other parents may have been in same situation, you could give them a ring.

 

Or use the NAS service directory. Good luck, sounds like you could do with a break. and your daughter some opportunities to get out X

Many thanks for your reply. Its been very useful. I will have a look on the direct payments site shortly. We could all do with a break ! She looks to me for a lot of things including entertainment ! Cheers. x

[pollypop]

Sorry, no advice for you, but I have this problem too. My lad is 17 and has no friends and limited independence and thus has nowhere to go and nobody to go with. He goes to a youth group, which I drive him to and then wait around for a couple of hours until he's finished. During the holidays there are a couple of activity days he goes to, but he's getting a bit too old for those now really. Again, it means me hanging around waiting to pick him up as they are usually too far from home to make it worth coming home so it's no break for me really. Don't know about Direct Payments, but I've never really looked into employing someone, not sure now many people there are out there willing to take a 17 year old out and about, where do you find these people?

 

~ Mel ~

Thanks Mel. Sounds like you in a similar boat ! During school hols and at weekends she looks to me for all her entertainment and plans...what are we doing today Mum..where are we going ! At 14 you hope they are going to start having their mates around or go out to town with them etc but she doesn't want to do any of those things. her older sister does all those things so i know its her Aspergers thats stopping her from doping those teenage things which her sis takes for granted. Trouble is I sometimes have to woprk when they 're off school and she hates that. Thankfully i finish about 2.30 pm but when i get home from work she often says...so what are we doing now Mum..I'm so bored !! Bored is her favourite word at the mo ( apart from the many swear words !! ) Hey ho...life is interesting and pretty OK most of the time . Cheers, T x

[pwag20]

Hi. I am pretty new to this site. My daughter is almost 15 and was diagnosed with ASD a couple of months ago.

 

I receive direct payments and have done for a few months now (since before her diagnosis). I get payment which allows me to employ someone for 3 hours per week. I actually employ two, one of whom is my neice and the other was recommended by a friend and actually works for another family in the same capacity.

 

It was not easy to set up especially as my daughter was not known to social services and at the time didn't come under the disabled childrens department of social services. However the children and families department do also have a budget for direct payments.

 

I can't remember quite how I went about it and was knocked back a couple of times to begin with. I suggest you call your local social services and ask for an assessment for direct payments by a social worker who will come out to see you and consider your case. Don't take no for an answer. If your local CAMHS is involved with your daughter ask for their help and support or for them to refer to social services for an assessment.

 

A lot of whether or not you will be able to get direct payments will be to do with how much money is left in the budget!

 

If you can get it though go for it! My daughter loves her new 'friend' who takes her out swimming, to the cinema or just into town and I enjoy the short break.

[westie]

Just another thing, I am not sure how it operates in different areas but where I live a number of service providers applied for "short break funding" from the aiming high for disabled children fund. And this includes children with ASD. Our local NAS group have been able to run a computer/ activity club for children with ASD to attend once a week (it is based in a special school) and then also bowling activities once a fortnight. They have also been able to run a trip to Drayton Manor in the summer as well, and fund a number of tickets to disney on ice. There are other groups in the area such as sports and after school clubs, youth groups, music and drama groups etc that run different days of each week (not ASD specific, for children with any disability) to suit different age ranges, and are held in different areas of the borough. Whether this funding will continue into the new financial year who knows? But it is good I think, and if there are such groups in your area this may be another thing to look into in terms of getting a break and allowing your child to take part in a suitable activity and have some fun too!

 

Try googling aiming high for disabled children short breaks (and your area/ city) and you may find something?

 

This is information from our council about the short breaks (you can click on a link and download all the information about the groups providing the services in our area, and the types)

http://www.rotherham.gov.uk/info/200034/disabilities/878/aiming_high_for_disabled_children/1

Edited December 10, 2010 by westie

[Sally44]

We've received funding via Aiming High. You have to be referred by a professional, so ask anyone involved with your daughter to put in the request. Our OT forwarded us. It is organised by social services. We have no idea if this scheme will be renewed in March next year.

 

I am presently reading a book called "How to be a Velvet Bulldozer" by Sandy Row. This is a book about a parent who adopted 4 children, who all turned out to be on the spectrum. It has some useful advice about how the system works and how to access certain things. There is a section of organisations that can help.

 

Regarding Direct Payments I would recommend The National Centre for Independent Living. This was in the book. I've tried to access Direct Payments for years and simply cannot seem to pin anyone down to come and do an assessment. They have told me who I should write to and how I should word the letter and who I should complain to if I get no response. They've also put me in touch with a local organisation for independent living that will help us get this support. Their number is 020 7587 1663.

 

I have been told by my SS that we cannot access Direct Payments or an assessment because "they don't assess children" and then "we only assess children with MLD". I have been told that both these statements are untrue. I have been told to write in and if anyone tries to phone to 'fob me off' again, that I am to ask them to put their refusal to assess in writing.

 

I have found time and time again (with different organisations or professionals), that initially they usually say you cannot get what you are asking for, or that they do not provide it. Later on (unfortunately, sometimes years later) I find that I can get it and do eventually get it. So it is about following the right procedure, putting it in writing, and following up any refusal with a complaint.

[Tally]

There are organisations who can help you manage the administrative/payroll/tax/NI side of Direct Payments. You can factor their fees into the Direct Payment so you will not have to pay them out of your own pocket.

[pollypop]

Many thanks to all of you who have responded to my post. You've given me lots of useful information with plenty now to work on.