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Here are some suggested organisations that offer expert advice on special needs.

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Transition

16 replies

Pazzazz · 12/10/2011 19:38

My son is going into adult sevices in two months time, he is at a great school untill he is nineteen (he has fragile x syndrome and autism s697.photobucket.com/albums/vv340/Pazzaz-/fragile%20x%20syndrome/ and a half and has been in a very good placement for his respite through childrens services. Unfortunately eighteen in two months time and I had a look at one of the places on offer earlier today, one nineteen year old in one corner and a fifty year old in another. Is there a clause at all where children can stay in childrens services until they are school leaving ages.

Michelle

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bigbluebus · 12/10/2011 20:07

Sadly I don't think there is. In our area children get kicked out of children's respite at 18 too even though they are still at Special School for a further year.
I have big worries about this situation for my DD too as she approaches transfer to adult services next year. There is currently no suitable provision in our area for young adults with compelx health needs plus severe leaning disabilities - which DD has. My only hope is that the children's hospice which DD has been using since she was 2 will continue to take her for a bit longer otherwise we wil have no overnight respite care at all.

Are you sure that the places you have been offered are the only ones available and not just the only ones that SS want to offer you as they are cheaper for them!!! Do you know any other parents who have gone down this road before you to find out where their YP is going? IME it is up to the parents to do their homework and find out what is really available and not just want the authorities want you to know about.

Tonicwater · 12/10/2011 20:12

My DD is 18 and is still in full time education at a residential college. As soon as she hit 18 she went to adult services. Not sure about respite but it may be worth asking if he can stay where he is until he has finished school.

Maybe the school may have some ideas as to what may be on offer for respite. It is worth talking to adult services as to what there is as I was surprised what hers were able to offer. There were a lot of things that I had never heard of when I spoke to my DDs social worker.

Original poster
Pazzazz · 12/10/2011 20:51

The respite service that adds is in now is private kings lynn,and his school is a independant school, the school that adam is in now he is the only day student there, I moved counties specially to try to get adam into the school
acorn park school banham, . Which they do offer residential care but not overnight respite.

a note from the lady at adds respite

Thankyou have emailed and requested if he could stay on

Hi Michelle,

Not sure how this all stands ,but will forward e-mail to my manager Carol, and get back to you soon as.

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Original poster
Pazzazz · 12/10/2011 21:08

I know im probably behaving a bit stupid - but seriously guys i want prepared
for when adam turned eighteen. He is very young for his age anyway
challenging at times but not old enough to go into a adult centre and to be around fifty year olds - they are not really eighteen are they, legally they are, but still children, i think 21 years old is more appropiate

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Tonicwater · 12/10/2011 21:38

I buried my head in the sand thinking my DD would never be 18. It has come around too quickly. I am at the stage where she will be leaving college next year and looking for what is next.

I know what you mean when you say about being 18 but still children. My DD has Cerebral Palsy, learning difficulties,is visually impaired and has epilepsy. I am really worried for her. There is a lot on offer for young people, but the problem we have is my DD refuses to consider the options and because she is an adult not a lot we can do.

Somewhere I have a bag of leaflets, not sure where I have put them but if you think it could be of use as they are for young people and country wide. I could search them out tomorrow and let you know of some options

BakeliteBelle · 13/10/2011 00:19

Our adult respite service (as opposed to our children's respite serviceS) start at 18 when children's services finish.

The adult respite service is heavily oversubscribed with a year's waiting list, and they mix all ages from 18 to 60. It seems so inappropriate but I met the manager and she hinted that I was being ageist Hmm

bigbluebus · 13/10/2011 08:39

Sad at fact they think it is ok to lump 18 year olds in with 60 year olds. How many NT young adults do they see hanging around with people in their 50's & 60's. Most of them wouldn't even want to be seen out with their parents - never mind 'choosing' to have friends of that age. Its about time the service providers got real.

BakeliteBelle · 13/10/2011 09:21

It is part of that 'poverty of expectation' and low aspirations that goes with children and adults with severe learning disabilities.

Unfortunately, our children are also meant to 'retire' at 19 once education has finished. Makes you wonder why they were educated in the first place (though I have to say the quality of my child's 'education' has been questionable anyway so retirement may be a relief to him!)

BakeliteBelle · 13/10/2011 09:22

I said severe learning disabilties, but no doubt this applies to others with learning disabilities as much

Spiraling · 13/10/2011 09:46

Exactly bakelitebelle. I find it frightening how poor the adult services are especially for the new generation of young adults that went to schools which worked so hard and well to improving there lifes for it to be taken away by adult home - as education stops at 19! personally i think its criminal.

My nephew has gone to a home and they have tried, they're put young people together, but they still do not get it, the staff etc are so institutionalised and clearly do not believe actually parents do know what they are talking about and can provide help! rather then trying to support.

Original poster
Pazzazz · 15/10/2011 15:13

I do have five other paces to look at and am trying to stay positive - as I do
perhaps I looked at the worst one first, I was not mentally prepared at all to see a fifty year old in one corner and a nineteen year old in another. Going
from childrens to adult services is such a huge step. In one day seventeen year old to eighteen, do not really think the child who behaves like a 10yr old most days and the parent, (yes i behave like a 10 yr old most days) - not a great transition, i think should take at least six months prior to their 18th birthday.. It is quite a fast happening. I am hoping for my son to stay in education until he is 24

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Original poster
Pazzazz · 15/10/2011 15:31

but even those 28 days per year that the meanies give us as respite ,
I do think they are still important as to where our dhild/adult stays

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Original poster
Pazzazz · 15/10/2011 15:38

@ BakeliteBelle my sons education was questionable, appaling one could say
I decided to move counties when he was 16 got him into a independant school, waited for nine months for a placement but was worth it

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Original poster
Pazzazz · 15/10/2011 15:46

thanks guys, and mumsnet because I am totally on my own with my son , completely on my own with no friends or family, worked out that way
and most days its great, just now and again its just nice to come across people who feel the same way or in the same boat

have fun Michelle and adam xxx

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WetAugust · 15/10/2011 19:15

Hi Take a look at the Priory Group. They have 18-25 residential colleges and also have units were young people post 25 live in small sheltered units.

Original poster
Pazzazz · 15/10/2011 21:01

yes I am not looking for a residential colege, I would like my son to stay at home with me until at least 28,

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