16+provision in your area?

[lorryw]

We have been asked to take part in County wide pilot project for young people with a learning disability, looking at care and how services can be delivered more effectively. My sons social worker nominated us because they need to explore options for autistic people, which as far as I am concerned are zero.

I would be grateful for any details of good practise in you area so that I can take them along as workable examples.

Our County Council seem to be following the direct payment mantra which I feel leads to social isolation. The idea is that the autistic person is awarded a pot of money to find their own carer. For my own part I just feel it is the councils way of off loading vunerable (and expensive)people. The carer is employed directly and the clients family are responsible for pay, tax, working conditions, insurance, holidays etc etc. I have been contacted by parents whose children are rapidly approaching school leaving age and local colleges have made it clear that they are not happy about accepting these children.

[lorryw]

ctd (pressed wrong button)

Parents are being persuaded that direct payments are the way to go. These young people have a lifetime ahead of them and I feel they deserve more than a glorified home baby sitting service.

I would appreciate your thought and experiences.

Lorainexxx

[BuntyB]

We are quite lucky in our area (Bradford) in that we have the Sacar trust which organises activities and social skills training to young people with the ultimate aim of getting them into employment.

You might like to google their website, or contact them. Sadly, as frequently happens they are constantly at risk of closing due to funding problems, plus they are oversubscribed.

Edited February 26, 2006 by Shona

[DaisyFulkirk]

I would not be described as having a learning disability according to the traditional IQ based definition of them, but I am Autistic and a Direct Payments user. Having direct payments not only means I can live where I want (not in some ghetto of 'special' flats) and be supported by who I want (women near my age that can't be mistaken for my mum when we are out and about) and get up when suits me, and generally be in control of all the decisions about my lifestyle. ANY other system does not, cannot allow this because by its very nature you're either in an institution with all the things that brings (fixed bedtimes, restricted choice of meals, less privacy, almost-random selection of caregiver) or at home but tied to a schedule of having someone sent by social services come and give you your tea at 4:30 every afternoon even if you'd actually rather eat nearer to 8pm. I did do the social services care team for a bit and while they were nice people, they were often late (their schedules meant they had to cross the city in 10 minutes sometimes), I never ever could be sure who was going to turn up, and I was always having to re-teach people how to do things 'my way', which meant that I ended up dangerously dehydrated twice (because I do not remember to drink) and went without a meal a few times because they didn't listen to what I said I eat and don't eat.

 

You're not responsible for tax and insurance and things unless you want to be, they have payroll services where they do that for you if you ask them to. The insurance is actually really simple, my care manager gave me a form to sign and that was it really.

 

When I was having home care from the council, if I had a late day on my course I had to cancel my 'call' and not get any help with my dinner or washing my hair that night. They don't help with social things either, if anything they make it worse because they won't go with you to go to a cafe or meet a friend at a bar, they will only help in your house. Personal Assistants you get through direct payments can (and do) do those things.

 

If I wanted I could get together with another autistic friend and share a house and employ PAs together, some of my friends do this, if you want to live with someone else and not by yourself it's a good way of doing it. If I needed or wanted to I could still go to a day centre or social groups or whatever, at the moment I don't go to any 'special' things like that, there aren't appropriate ones for people like me round here, so I just go to some political things which have a kind of social side-effect thats quite nice.

[Kathryn]

Daisy, as ever, there's lots of useful information in your post. My 16 year old daughter is already talking with enthusiasm about living in her own place with support. I'm interested to know how you go about employing a PA? Did you approach an agency or advertise directly, for example? Did Social services help you?

 

As far as post 16 provision in our area goes, Loraine, I'm still finding out about this. I have to say the staff at the FE college L is at have been great so far and have done a lot to boost her confidence. They seem to have a lot of support in place. L's psychiatrist who has been with us through the difficulties in the past year continues to support us and is giving Social services a prod to get them thinking about what L might need when she's an adult. So far SS have been absolutely useless: they seem to have completely abandoned us.

 

K

[lorryw]

Thank you Shona, the Sacar trust sounds excellent.

Daisy, I am really interested in what you have to say. My son is 20 and has severe learning difficulties, is non verbal and requires constant help to remain safe. We love him to bits and enjoy his company but feel that he needs to have something to do on a daily basis. At present he is fairly socially isolated and has no contact with his peers.

We would have to interview and employ the staff our county does not have a payroll system. SS simply call every 3 months to make sure the payment is being used appropriately. Our son is very vunerable and would have no means of telling anyone if he was being mistreated or upset.

I really have no idea how my son would prefer to live his life but I do feel that for the moment he feels happy and secure with us.

Kathryn, direct payments are allocated by social services. I expect every area has different rules and regulations but I would suggest you contact your daughters social worker.

Lorainexxx

[nellie]

We too are looking at how to meet the needs of adults with ASD in the local authority. I would be interested to know if any there's any authorities successfully running their own ASD service for adults, including residential and day care.

 

Most authorities have to go out of country to find residental care provision or buy in a local care services.

 

My son is autistic with learning difficulties, he is in an ASD out of county residential placement, he's happy to be there, has a good quality of life and would not want to live at home with his old nagging parents.........my words, not his but I'm sure he would agree!

 

He went into his placement at 19 which is some distance away, but we see that as a bonus, not a drawback. He has been attending college with his 1 to 1 carer since he went there, unfortunately this is his last year at college so we are looking for employment/resources for him but he would need a great deal of support.

 

Nellie xx

[kirstie]

We have something here in edinburgh that hasn't long opened. It's for AS school leavers who need help to talk through career choices and other issues. Because my son is only 6 it isn't something i have looked into very much at this stage but i will find out more for you and post it here.

[Kazzen161]

I'm in your area Lorry. My friend uses direct payments now, and as she employs people through an agency, they do the NI, tax, etc. She uses it to buy a mixture of services, including a 1:1 carer.

 

There is a person who advises on direct payments (employed by Carers Together I think), and you can get someone to do the admin, but you have to pay for it.

 

Did you know there is a Parent Carers Info Course in Basingstoke on the 25th March - covering transition issues, including direct payments, FE, Training and employment, housing, etc Tel 01794 519495

I went to the course a few years ago, and it was very useful.

 

Karen

[lorryw]

Wow, thanks Karen I didnt know such a thing existed. I will give them a ring today and let other parents know.

thanks,

Lorainexx

[Kazzen161]

If you register with Carers Together, they send you a newsletter, have meetings (in Basingstoke) and trips and let you know about appropriate courses. A lot of the people on their books are looking after parents or partners with mental health problems, but they do cover us as well. They are running a Relaxation Day in the summer - the last one was excellent.

 

 

That is one thing that you can highlight - that it is not easy to find out what is already around.

 

 

Karen

[TuX]

There isn't much for 16+ provision here,there's http://www.aspirations.info which is only a couple of streets away from me but is only worthwhile for those who enjoy socialising.it's also the base for Autistic Society Greater Manchester Area.

There are NAS residential homes not too far away in Northenden and Todmorden for people with ASD[the one in Northenden also has a day centre] but to get a place,a social worker is needed,and they do not give a dam* about adults with high/er functioning Autism,plus there are rarely any spare places.

There is also Prospects employment Agency [no idea where in Manchester it's based] which is for HF/AS Autistics,for career/job related things.

Creative Support also look after ASDers [with accompanying mental health problems] to-in support and residential homes.

[DaisyFulkirk]

I will second that Tux.

 

I have a (quite mild) physical disability as well which I think avoided some of the worst of the "you don't qualify for our service" chorus from the social services (more like social dis-services) so even though ALL the help I need is for autism-related reasons not bad-legs related reasons, I am on the Physical Disability team. I think having a good Care Manager (they are social workers only in charge specifically of care-type things) is pretty much the answer to everything... if you have one of them on your side and he or she knows their stuff, you WILL get what you need in the end.

 

Loraine, I know what has worked well for some individuals in the past is to have non-disabled or less-disabled housemates who can while not taking 'official' responsibility for anything be a bit of a watchful eye for if there are problems, this is also the bit where having an advocate (who is ideally a disabled person but older and with a bit more experience of the world and all its 'pit-falls') can be really really useful. My advocate is in her 60s and she doesn't have autism, she has a physical impairment but she knows all about doing forms and asking for help and how to get what you need and independant living and Personal Assistants. I interviewed my Personal Assistants with another disabled friend who is about ten years older than me and used to doing Direct Payments and everything, they work for both of us although at seperate times and so on, so that gives me some help and 'back-up' with dealing with it all.

 

If the person and their parents are all happy with them staying at home then why not, its different for everyone. One of my friends with Profound and Multiple Learning Disabilities, her mum doesn't think she wants to live at home anymore, she has been at special college and now she's grown up. The most important thing is that you're happy and that you have as much choice and control of your life as you possibly can, wherever you live.

 

Kathryn, my friend wrote adverts for both of us "two disabled women are looking for Personal Assistants in..." etc and we gave them to the Job Centre and she put some up in shops and things. I showed it to my Care Manager and she said it was OK and we could interview the people at their office or at the Job Centre if you ask, so you don't have to tell your address except to the ones you give a job to! It was all quite easy, just a bit of organising involved. My advocate said I could probably help someone else do it, now!

[Kathryn]

Thanks Daisy. My daughter has a physical disability as well which may help her, as it is more obvious - (or it may throw everyone into confusion, given that the services like to categorise people: I don't know). I think in her case as well autism will impact more on her life, and she'll need more help there.

 

Loraine, direct payments were mentioned a while ago when my daughter was a lot more dependent and I was desperate for some help. The social worker suggested I use them to pay my friend who was coming in twice a week while I went to work. But I had an arrangement with my friend already - and she didn't want to work on this basis, so I didn't take this up.

 

It's not so important at the moment as L is living at home and doesn't need much extra support, but one day we will have to sort something out. I expect we'll have to light a fire under the social worker to get him moving. We haven't seen him since June and he dosn't return our calls.

 

K

[katkin]

Oh Kathryn, please don't mention social workers not returning calls here while LorryW might be listening!!! She will not be held responsible for the fall out and remember it's me that will have the rant over the phone later!!! A friend of Lorrys still has not received her payment for care from the summer holiday 2005. This inspite of following all instructions about bank accounts etc. It's just as well (or maybe not) that this lady could afford to pay the worker herself in the meantime. Post 16 provision , what there is is a mess at best, and that's if you can get any. Not much real help except a listening ear I'm afraid. Kat

[lorryw]

Hello Katkin.

Guess what, the Direct Payment still hasnt come through. This is now 3 months since the date I handed over the bank details.

Furious doesnt cover it!!!!!

Lorainexxx

[katkin]

Bloomin' 'eck Lorry! We need to start composing some tough emails with copies to MP. She rather unwisely puts her email add in the paper! It seems that Advocacy woman is not worth her job either (knew I should have applied for it when they advertised - I'd quite enjoy putting some bombs under neath social services!!) Kat