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"Our son has Down's Syndrome - as he transitioned to adulthood, support disappeared"

(13 Posts)
LaraGransnet (GNHQ) Wed 15-Jun-16 16:52:22

Sandy, our lovely colleague over at MNHQ has written a startling guest post on how little support and information there is out there for parents and carers of children with special needs who are transitioning to adulthood.

We'd love to hear gransnetters views or experiences of this.

You can read the guest post here.

whitewave Wed 15-Jun-16 17:00:58

Well I worked in special education early on in my career. At that time there was quite a lot of support, like sheltered workshops, housing with assistance etc. For young adults. I have been totally out of the loop for quite some time. If there is little support I can only think it is due to cuts.

jinglbellsfrocks Wed 15-Jun-16 17:08:44

It's shocking that all parental rights go over to the local authority at eighteen and parents actually have to seek out this 'Deputyship' off their own bat. Surely this should be discussed and some help given to the parents to do this.

There is a thread on Gransnet at the moment about how we never stop feeling our children's pain. It must be so much worse when your child isso disadvantaged in this way. sad

I hope the young feller finds his way successfully in the world. Please God don't let the knocks be too hard to overcome.

Luckygirl Wed 15-Jun-16 17:13:47

When I was working for SSD it was really only adults with LD who got any help at all - and they got loads! It was a bit frustrating for those of us who were trying to help adults with physical disabilities as the support for them was zilch. It would be sad to think that this support has evaporated.

SSD should regard these people as "vulnerable adults" and provide services.

Try getting services for a young adult with mental health problems! Our family is beating their head against a brick wall with all this and getting nowhere.

Jane10 Wed 15-Jun-16 17:22:53

There seems to me to be a 'transitions' industry at present. Lots of funding to short term projects to get school children with SN of various kinds out of school and into college (to often pointless courses) then authorities can just wash their hands of them. God help you if your child is over 25 -most projects are funded for 16-25.
Up here we have 'self directed support' which can give families funding to purchase support of their so called choice. In practice its a nightmare to administrate and can be very hard for families to organise.
There are constant transitions in life, moving on from school is only one of them. Disenchanted ex professional in the field? Moi?!

SparklyGrandma Sun 24-Jul-16 13:14:55

When a disabled child becomes an adult, the parents and carers need to apply to have them assessed by Adult social services for support. Some areas even have a 'transition' team or specialism. Its a hard process, parents and carers have to be strong, but it has to be gone through.
If your disabled child is 17 and approaching adulthood, get in touch with Adult social services physical disabilities team or learning diabilities and ask for an assessment.

HildaW Sun 24-Jul-16 13:24:43

There are some glimmers of hope out there. In this part of Herefordshire there is a wonderful local charity that specialises in giving people with many different Learning Difficulties including Down's Syndrome help and support. Its called ECHO and runs such things as a Drama group, a shop with Arts and Crafts sessions. Lots of opportunities for social experiences including a 'Buddy' scheme. Its run by a dedicated group of people who started out realising there was nothing out there for young adults. Its a lovely local success story that's been going for 25 years. Needless to say its a charity that has to make every penny count and relies heavily on donations and volunteers as well as its excellent key staff.

whitewave Sun 24-Jul-16 13:29:06

The main problem with charities, sterling though their work may be is that support can withdraw at any time. Look at the children's charity with that large Flowery lady. Gone over night.

TriciaF Sun 24-Jul-16 15:14:55

There's also Botton Village run by Camphill Village Trust,in N. Yorks. But I should think it's difficult to get a place there.

HildaW Sun 24-Jul-16 15:41:32

Yes but for jolly good reasons!

PRINTMISS Sun 24-Jul-16 16:21:16

It is not just a question of "getting a place", certainly not with the charity which cares for our son, and has done so for the past 40 years. Yes, they can probably find a place for a disabled person, and from experience they would make sure that that place and that person were perfectly suited, however in order to accommodate that person, they would have to "tender" for the right to do so. In other words, they have to come into the 'costings' laid down by the local authority. United Response are a national organisation with homes throughout the u.k. and are constantly keeping everyone in touch with what is happening at government level, and fighting for better facilities for all disabled, and they have disabled reporter for such matters.

Luckygirl Sun 24-Jul-16 16:30:02

For a short while I was a "transitions" social worker and there was lots available for young folk with LD. It sounds as though this has changed for the worse since I retired.

Camphill Trust has communities in different parts of the country - superficially they are airy-fairy (based on Steiner principles) but the underlying philosophy is good - self-sufficiency and a family atmosphere. Every resident has a role and a job and they live in family-sized houses.

TriciaF Mon 25-Jul-16 15:45:01

That's good to know, Printmiss. When I was working as an EP two of the schools I covered were for children with mild or severe learning difficulties. Our responsibility ended when they left school but I kept in touch with some of the parents - we had started parents groups. Several of them had the same problem as the person in the guest post.
It was at the time when the care of these children changed from Health to Education.