Seeking parents of children with severe disabilities in Transition

[Bakelitebelle]

Hi. DS is 15 and in Transition, though that hasn't amounted to much so far. I am really keen to know how it is going with other parents who have severely disabled children and who are facing the future and having to make plans for your DC as they steam ahead into adulthood. It would be great to reach out to 'the other side' and hear from parents who have adult children too.

Anyone want to join me on the journey?

Where we're at: Our Transition Annual Review (year 9) was no different really from a regular AR. Noone discussed the future and despite being introduced to our Transitions Worker, we haven't been given any information and we have no Transition plan, still.

I realise it is yet another job that us parents must take on, if we really want to make plans. I have discovered that respite locally will be inadequate for DS's needs, so we are forced to contemplate residential care of some sort. Scary, but I want to see round some of these places, plus the only post-19 education establishment I know of that would take DS (but it doesn't look great). I do wonder what on earth he will do all day as an adult, once school has finished, and at times I am paralysed with fear about abuse and neglect. These places can't all be bad, can they?

DS is 13 so we are thinking about what will happen after school. He will be in school till 19 which is some comfort but we have no idea what happens after that.
Me and Dp have already started the switch with jobs as DS doesn't listen to me so hopefully i will be qualified and in paid work before he leaves school.
We are prepared to have him at home most of the time so any adult respite/day centre places will be a bonus

DD is 17 and has PMLD and complex health needs. She will be nearly 20 by the time she leaves school. We have looked at a local SN college which takes day students for 3 yrs (as well as being residential), We are planning on applying for a place there but have to prove a "continuing educational need" in order to get funding. Not quite sure how to do that but will be watching and learning from parents of some of the slightly older pupils at DD's school who also want their DC's to go there! Our only other option is one day centre which caters for YP with DD's level of need - but it is run by LA - so who knows what will happen with current funding cuts.
We are also concerned about the lack of overnight respite facilities in this area. DD has been going to local children's hospice since she was 2 but technically she should leave at 19 - but there is a possibility they may keep her on their books a little longer - but whilst that is great it doesn't resolve the issue for the future - and whilst I have raised the issue about the lack of any suitable facility for young people with complex health needs in this area on a number of occassions with the PCT commissioners - they jsy sweep the matter under the carpet or suggest solutions which show their complete lack of understanding of families like ours.

My thoughts are also turning to having to go back into the job market - I'm currently very part time and self-employed. Not easy in a recession when you've been out of the mainstream job market for years and I'm not young any more. I am even considering bumping up my self-employed occupation with shelf stacking or cleaning.

Debs DS has challenging behaviour and takes it out on us and his siblings and he wakes up several times each night. I can't see how we will manage him at home. Sometimes I feel hard-hearted, but I do feel clear that residential care is the only option if we want any sort of life and to avoid an early grave. I just want to be able to research the best options but there is no easily accessible information. I am hoping that someone will come along and reassure me that residential care can also be a good option for people with learning disabilities.

OP with ds we just assumned he would stay at home with us once he left school and me or dp would be his carer. Having two LO's (3 and 1) has made us look more closely at options such as residential care. DP doesn't want it but if it would mean DS is happier and the other dc's are happier we would have to do it. That's if there are any places for him in 6 years time.
He also has violent outburst and self-injures a lot, he is nicer to the younger dc's but the 3 year old is realising something is wrong with him and has become very defensive when he is around. His elder dsis was his punchbag for years which was terrible for her

I have met a couple of parents whose children went into residential care at 18 and they have been happy (at the time that I spoke to them). One of them felt that she had the best of both worlds as her DD came home every other weekend and at various times during the week, and they didn't have to struggle on with inadequate respite like when her DD was a child. However, I did speak to another parent who felt permanently worried; they had to keep a really close eye on the residential home as staff changes often meant variations in quality of care. The important thing seems to be having our DC's near enough to keep checking on things and to keep bringing them home

In wales we have a brand new SEN Transition project, www.childreninwales.org.uk/14995.file.dld
i hope that link works. Its a pilot scheme with ESF money. DD is 14, and for the first time has access to youth club and holiday activities without me! about bloody time I say. They also do person centred planning, peer mentoring and will begin to look at employment/ college options for her when she's a bit older. I know they had to fight really hard to set the scheme up, and it is heavily over subscribed already. wefo.wales.gov.uk/news/latest/110923sentransitiontoemployment/?lang=en
DD is also secure in school til she's 19, and tbh I think her best option would be supported living/ residential college. She enjoys company, and needs FT suppport. It will be really hard to get her funded for a residential college by all accounts, start the battle early. A friends ds is half way thro his college course and has been told by our LA that there may not be funding available fo him to finish- an awful situation for them to be in, he loves his placement and has made friends...

summer that looks very interesting, although I always have a brain shut down when faced with official documents - I've skim-read it.

Great to know Person-centred planning is happening where you are. We have a general resistence from the schools to do PC planning. Are your schools welcoming Family Leadership and person-centred thinking? Do you have a plan yet?

I am actually - with outside help - forcing the issue and setting up a person-centred review for DS. I just feel it is the common sense approach to get the right people round the table and really start talking about, and planning, the things that really matter and need to be dealt, e.g., what is going to happen when DS's respite package finishes on his 18th birthday?!!

We need a timeline and an action list - who is going to do what, when and why. And also, what should we as a family be doing to ensure the transition at 18 is going to be as smooth as possible. We are happy to do as much as possible - we always have - but we really have no idea what to do.

PCP is common practice here! Our respite package also ends on 18th birthday tho school goes on til 19.
Another link I found today is a Cerebra transition conference in cardiff www.cerebra.org.uk/English/events/Pages/Managingtransitionsseminar.aspx
Where abouts are you?
a brief look through their objectives perhaps you could use the framework to make your own action list?

summer we're in the South East of England. Same here: respite finishes at 18 and school goes on until 19.

Although I feel PCP is a common-sense approach, the process is only as good as the results at the end of it. It concerns me that the introduction of Personalised Budgets are going to be used to cut costs and that those who rely on expensive, specialist care will not get enough money to pay for it.

I went to a conference about PCP and although some of it was very positive, I was really shocked at how pleased some of the speakers were at their relatively piss poor care packages, (relative to the sort of care packages some middle class squeaky wheel types like myself people get in our area).

The Cerebra transition conference looks interesting and I'm in the nw so may look at going to Leeds or Liverpool.

My daughter is in year 9 and although her school has a post 16 part because we are in a different LEA, we will have to get the LEA to agree that which they do in 1 year chunks apparently and then there will be the inevitable struggle about transport as they try to wriggle out of that.

I had a call this week from transport saying they are going to do a review and want to come round next week so am already on my guard.

The fights just keep coming, don't they.

DS up since 12.45am this morning, from 4am the night before. Lots of hair pulling, scratching, hitting and shouting - always an every day occurrence but worse to deal with when we're sleep deprived. We can't watch TV, or listen to music as he controls the living environment has only watch a handful of programmes over and over for several years now. He attacks his siblings. He always wants my attention and won't let me cook or talk to anyone else for more than a very short period of time. And he woke up covered in poo. My teenage toddler

What keeps us going is our respite package. It's days like these that I want to shout at the school for not helping us make any sort of plan for DS's adulthood or help us at the very least get the discussion going about what the fuck is going to happen to him the day his respite ends.

It's days like this when the hard reality hits that this Transition thing is a DIY job and noone is going to help us unless we take over the process. I am too, too tired for all this

summer, can I ask you a couple of questions:

1. Who facilitates the Person-centred Review and supports the family and young person to make the review work, in Wales/your area? Teacher (trained in PCR)? Or an independent key worker/advocate. Transition Worker?
2. Do you have a PCR every year from year 9?
3. How much time is allotted to each PCR?

I am trying to push for PCR, and I realise that we need named professionals who are trained in facilitating these reviews properly. DS's school were trained in PCR, but then did not actually do them. They allotted more time only in the year 9 review and invited a Transition worker along, but there was no sense of looking at what the young person wanted, and no plan was made, just cut and paste reports onto a CAF form. The reviews are really no different from the usual Annual Reviews.

Please can I join you guys. I am helping my sister at the moment with her DS 18, he will have to leave his respite home and his school at 19, You are right BLBelle its very DIY. I have found most people helpful if you ask the right questions but YOU have to look for the available places and visit them yourself. Alot of the people I have spoken to have said those who shout louder get more help. The forms you have to fill out to work out the PCP and personal budget are a nightmare and really are worth talking through with someone before sending off as they are forms for everyone with any disability, the wording on them is so confusing. We managed to get some help and are rewiting it. We have looked round a few places, things were going quite well untill yesterday when we went to a day care center which was awful. All the things you dont want to see. Its hard as my nephew has servere Autisum, we are looking at places and some just seem to "mind" them, as they are going into adult services the structure of an eductional setting isn't there and they are able to "choose" what to do. We found a great working farm that has veg plots, animal care etc we thought it was fab, but now I'm thinking is it right for his needs or am I looking at it thinking well I'd like to be here all day. It's so hard and we are at the begining of this journey.

my daughter leaves school in july at almost 19 and despite a person centred plan nothing has progressed..social worker who we hadnt met before turned up day before last ever ed review to announce that she couldnt make it to the review (no one from borough in attendance) and hasnt been heard of since..3 months on still waiting. fuming you bet i am

In an ideal world what should happen at the year 9 transitional review? My daughter is 14 and coming up to that in May this year.