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#1 Miss Mac

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Posted 15 April 2016 - 10:43 AM

B is 16 and about to start the transition into adult services. I'm seriously worried about it all.


We need to decide whether or not he remains living with us, albeit with carers coming in to support him, or if he goes into full time supported living. The latter terrifies me, as he needs so much work to keep him safe and even more to make sure he's stimulated. I worry that all the progress he's made will vanish over time and he may be left at risk. He will never be able to live independently, whatever happens.


I know if we get the right setting, I'm sure he'll be fine and thrive, but you hear all those awful horror stories.


What have you done/what are you planning when your child reaches this stage?

#2 miami girl

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Posted 15 April 2016 - 01:59 PM

Hugs MM (((()))).


As you know Littlun is only 9 so got a long long way to go to get to where you are now.


What are the options of supported living where you are???


What provisions are you looking for and what do they have in place??


Could you keep him living with you and get the package put in place that he needs requires with maybe working towards B living in supported living when he is older???


Sorry probably absolutely no use to you at all.


I always worry about this and I have no idea what will happen when he gets older, we also have his older brother to consider as I know for certain he will never live independantly and no idea what the provisions/criteria is in our area either.

#3 Mozzy


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Posted 15 April 2016 - 08:49 PM

As a company where possible (and it's not always) and as long as it will not have a detrimental effect on the service user we always opt for a staggered transition.


Some of our services users live in their own home or flat with 24/7 support either 1:1 and we have a couple who require 2:1. Some share houses with other people.


It doesn't matter if its a home on their own or shared (our max is usually 3 to 4 people per house and is often just 1 or 2 depending on needs) but whatever it is the service user gets housing benefit to pay the rent and council tax benefit. 


When recieving housing and council tax benefit you are allowed to not be in the property every night. So you can start with just being there for a weekend for 2 weeks then a 3 day weekend for a couple of weeks and build it up.


If it is a home with more than just the service user so a shared home it is even easier to stagger a transition tea time visits, a night a week, 2, 3, 4... nights a week.


If it is a larger residential home again transition can be staggered very easily. (Down here we have care providers who source or own properties normal houses and flats all over the area rather than large residential homes due to changes campus reprovision and reach standards I don't know what you have more of in your area.)


Of course a staggered transition does not work for all, some need a firm change to understand which is their home.


What we do as a company either way is do (again depending on the service user and their way of working)

Social stories

Photo books

Asking them how they want their house / room

Letting them have the room / house totally ready before moving so if they want superman in the bathroom he is painted or posters up before they move in so when they move it is complete and no one is working round the service user

Rewards and simple goals for the move or transition

Have a whole circle of support meeting before, after and later on to keep everyone aware of how it is going then once it is all stable decrease the meetings back down to annually

Parents come to visit on set night every week

We would also set a staff team up prior to the start of the transition so the staff team would be consistant and have those staff (if appropriate and needed) visit the service user in their current home, shadow education, parents, current carers etc.

Lots of pre-planning e.g. the activity plan including any education or day service they attend, evening home activities for the new home, outings etc. Menu plans too either a 4 to 12 week rolling menu if they like that or a plan and shopping list for the first week (so shopping does not become an stressful complicated stress to staff or service user.


It's so hard to list because everyone is different and no two transitions I've seen in my 6 years of work have been the same as they are person centred.

#4 apricot


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Posted 15 April 2016 - 08:51 PM

I don't know if DS will live independently. I do know I want him to get as much out of education as possible, and while he has an EHCP, he's living with us so I can act as advocate/manager/sorter outer of official stuff. Provision for ASD adults with normal IQ round here is abysmal. He could go on the social housing waiting list with the rest of the general population, but he couldn't cope in a sheltered bungalow surrounded by old folks or a flat surrounded by single mothers. He won't earn enough to rent privately and won't cope in a flat share. Our only option is to have him live with us and train him to cohabit nicely !

#5 Prosecco Queen

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Posted 15 April 2016 - 11:00 PM

This is exactly what I need to be posting about and will do soon !! T is different to your son I know but is now in his own flat - housing association - with carers going in...

There have been pros and cons and the challenge for us has centred around the assessment that he has mental capacity....

I will try and post over the weekend xx

#6 caci


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Posted 16 April 2016 - 11:22 AM

I have been following a thread in another group about young people and housing.


The discussion there has been about those who could potentially live independently, but, as Apricot said, they are very unlikely to get a high enough banding to get social housing, and even if they do, entering the bidding system, plus the f2f assessments will be too much for them to cope with. 


A couple of people have arranged self -contained annexes at their family homes, which appears to be a good solution (assuming you own your house and can afford the annex !), but there is then the huge issue of what when the parents are no longer around. Ultimately, the young person will be living in an annex to a family house they can not afford to maintain (housing benefit wouldn't cover costs of a whole house with annex for a single person ).


No answers, but I found it reassuring to know others are in the same position.


(Sorry, just realised this post was started about someone who will not be able to live independently.)

#7 mrselvis


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Posted 16 April 2016 - 07:10 PM

We're opting for another Camphill residential placement following on from a Camphill residential school. Our son has a strong work ethic and has to have a life with real purpose. The Scottish Camphill communities have great opportunities on site. an abundance of workshops and work programmes. Now having secured residential funding, our problem is getting a placement, as they are scare.

I was worried about opting for a supported tenancy with carers coming in, as even with a specialist provider, the shift changes and staffing pattern would be difficult for him to cope with.

i would say visit as many provisions as possible to get a feel for what's available. We have had to do all the research ourselves as its unusual in my area for young people to be at an out of authority residential school and to be looking for an adult residential placement too. Securing funding was a fight as it's vastly more expensive than a domestic type placement, but he needs a bespoke package. It's getting the right placement at the right community that is really difficult.

#8 mad cat lady

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Posted 17 April 2016 - 01:06 PM

My son is now 17 and we still have no transition plan, our local SS are keen to try and ignore the situation, I have mentioned the transition a couple of times but keep being told they will start when J is closer to 18 so I am also interested in how it should be done, we know that being at home is not a place where J can advance as here all he does is play on his computer, we can not convince him to go out with us, inevitably he becomes very bored which leads to unwanted behaviour but he has told his social worker that he does not want respite so we do not get a break (the reason is that he is very particular who he spends time with and the only person he wants has moved to a different role in the company so no longer available).

#9 Miss Mac

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Posted 20 April 2016 - 09:34 PM

I really like Camphill and their ethos. There's one not too far from here, but it's out of authority. Still, if it's right for him, there are ways to achieve it ;)


We've a review coming up in the next couple of months where things really start to change. There are swings and roundabouts both ways, and it's complicated by the fact we want to move about 150 miles in 5-10 years time; the actual timing depends on what happens with jobs! B has 'friends' here, would have a lovely social life with his carers, and lots of people know him - but we'll end up 2 hours away by train. I think that's adding to the worry.


He'd have to start over with new carers and new people if he came with us, but we'd be seeing him every day. I suppose a lot will depend on the package we can organise. Some respite would still be necessary if we were doing the night time shift.

#10 deannatrois


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Posted 21 April 2016 - 06:07 PM

Hmm I wish there was more information on this.  I have a 20 year old, he sits in his room all day playing games if he can.  Wants to go to college but we are starting on his 3rd level 3 course at a 3rd education place (main stream) this September.  The first two offered no support at all, and I'm fighting with EHCP forms trying to figure out how to get his needs assessed when he's not in education at all and has never had his needs assessed (with educational establishments not providing or acknowledging any support needs let alone doing 'all that they reasonably can').


I'm 50 and I do wonder what will happen when I'm not here (unfortunately I'm not in the best of health). He's very intelligent, seems socially reasonably able but I see a young man who has a lot of difficulty performing even simple daily living tasks.  Living independently?  He doesn't seem on the surface to be someone who needs a lot of support but he does.  He does have a social worker but I'm suddenly having problems with her, working out how a 2 day x 6 hrs social care package became 9.5 hours and getting anything on paper as to what his assistants will be doing or even if they have any experience/qualifications.


This doesn't bode well for fully independent living later on.  I'm quite scared for him.

Edited by deannatrois, 21 April 2016 - 06:08 PM.

#11 imperfect parent

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Posted 21 April 2016 - 08:21 PM

Our Ds is 18 and currently between educational placements with little hope of getting a suitable one.  Transition has been almost non existent.  He has a transition social worker he has met twice. The SW is good, but there is nothing to offer.


The company who provide respite packages and support in county cannot keep staff; friends who work for them are as unhappy as friends who receive what is called a service, but is in reality a random person to spend time with those in need of support.  There is little continuity, or understanding for families due to staff shortages.  There is virtually no support for workers, some of whom are excellent given enough time and freedom to  give the support needed. From what I have heard we would almost certainly make life more difficult is we tried to use them; it just isn't worth the risk.


What I will say from our experiences over the years is that support works when parents are listened to; things can still fall apart when ASD trained support workers stop listening.  I'm not fussed what qualifications anyone has, the acid test is do they get on with DS, and will they talk to me?


From what I've read you as a parent can request a assessment.  Have a look at IPSEA and SOS SEN websites.  It does allow for parental requests where the school/college  don't request, but I think you would need to include info about failed placements as part of the evidence to show that he does need support.

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