Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Special needs chat, Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.
Transition to adult services from sn residential school(22 Posts)
Hi everyone, I am pretty new to these forums so before I start waffling on about my problems and being viewed as the "mother from hell" could I please ask has anyone any experience of the above please? I have just discovered we basically have no parental rights once our dd turns 18 in just a few months and are now deeply worried following 17 yrs of battling to obtain as much help as possible for dd. From what we have learned in just the past few days it sounds like if we try and keep battling once dd turns 18 - she is like a toddler in an adults body with no capacity to make serious decisions for herself - it sounds like ss can pretty much tell us to get lost. Also has anyone used advocate services please? Why doesn't anyone listen when we try and explain our dd is not capable of expressing her desires? Feeling absolutely desperate at present so any advice at all would really help. Can't get a straight answer from anyone at SS and find it very difficult to trust anyone at present. Have been to CAB and spent a considerable amount of time on the phone with Mencap Advice line but not hearing anything that offers peace of mind. So worried we may have no choice as to where our dd lives once she leaves school as we were hoping for supported living house very close to home but know very little about how this works. All we are hearing is that dd needs to express her desires but what happens when she can't? Sorry I promised not to waffle - very worried mum.
My DS (Aspergers 23) is seen by Adult Services. I've found that Adult Services do involve me but that's probably because DS asks them to - he doesn't feel confident dealing with them himself.
Have you spoken to Connexions. They are supposed to provide advice and support for young people up to age of 25 who have Statements. Be sure though to ask specifically for a Connexions Special Needs Advisor as most of their staff have very little SN experience.
Your DD should have had a Transition Plan drawn up while she was still at school which gives the multi-agency view of how she should be supported into adulthood and beyond.
I'm sure you can continue to act as your DD's advocate. I just don't know much about you you achieve that beyond being her DWP Appointee but I would hope that one of the charities or even IPSEA could advise. Failing that you may be able to get her legal advice via an application in her name on her behalf to discuss matters with a solicitor (would suggest Disability or Human Rights focused lawyer).
We have some lawyers on here who may know more about capacity etc.
Look for a solicitor under the Legal Help scheme who offer specialist support in Community Care. The income to qualify will be the persons income so if they are on income support they will automatically qualify.
Thank you so much Wet. Unfortunately I can't believe now how little info we have been given by child services in the past. We have never received any Transition plan - transition is just a vague word that has been bandied around for a few years but we have never had a meeting where we have sat down and discussed dd's future. I know it sounds incredibly naive but we just assumed she would be able to move into a house close to home when she reached 19 as she is already residential 52 weeks per annum. We have said many times over the years this is what we hoped for and no-one has ever suggested there may be a problem. The lady from Connexions came to 2 of the bi annual reviews - which are mostly concerning dd's school and her placement there of course - and we were led to believe she was just looking into the possibility of our dd entering college at 19 if there was a suitable one available in our county. However she quickly identified there was nowhere suitable to meet dd's needs and we never saw her again. That was a couple of years ago. We did have a very young - but very nice - young girl came to see us a year ago just making initial enquiries about what we would prefer for when dd leaves residential school but there was no follow up from that and our circumstances have changed since that meeting so we would need to re-evaluate some of the things we would have accepted then. Your son obviously can speak for himself but there doesn't appear to be any info where the young person can't. Our dd would agree to living with Jack the Ripper if there was a bar of chocolate on offer! She only has the speech of a toddler - odd baby like words - and only has the ability to say no if she doesn't like something. She can't even say yes where she likes something but I feel like I am banging my head against a brick wall when every advice line says my daughter will need to express her wishes. How?? Someone on an advice line today really upset me when he suggested our dd might not want to live close to us. She is presently 2 hrs drive away and we have driven a 4 hour round trip to visit her EVERY WEEKEND for 10 years. She is looking out of the window waiting for us to arrive every Saturday morning and jumps all over the place with excitement when she sees us. For someone to even suggest she may not want to live close to home and spend much more time with us was devastating. DH and I feel like a pair of paedophiles instead of exceptionally loving parents. We have lived for the day when dd could move close to home and spend much more time with us as the past 10 yrs have been incredibly hard. The residential school have never really liked us visiting every weekend and give the impression they prefer parents to let them make all the decisions and for mum and dad to stay in the background. We could never just hand our dd over to complete strangers like that just because she has a serious disability. We are older parents and my dh is in poor health physically so will struggle to travel long distances in a few years and we have no family or friends who could take us if she is placed in a house miles away from home. We are desperately worried now and would love to hear from anyone who has been through transition with a youngster who is unable to express their own wishes. We have enquired about power of attorney but this is not possible if dd cannot express her own wishes and court of protection deputyship doesn't appear to offer the help we need either but we would rather keep things amicable with ss if possible rather than taking the legal route which can create animosity as we know from bitter experience. Dd used to come home every 4 weeks for the weekend but we missed a visit a few months ago to take a week's holiday and that seems to have unsettled her in some way or she has misunderstood something which was told to her whilst we were away as since then when we mention coming home she just says "home in lots of sleeps - on holiday!" Obviously we won't push her until she feels ready again but of course that is upsetting for us too.
Thank you Nigel but she is at residential school so doesn't get income support or anything like that at present. She has only been classed as 'Looked after' since she was 15 as before then we paid for everything apart from her school place. We paid for all her toiletries, clothes, spending money, school trips etc. Which was our decision. She has only received her looked after allowance - or whatever it is called - since just after she was 15 as we were told if we agreed to have her changed to 'Looked after' status it would help tremendously when she was ready to move to adult services although we weren't told clearly how and when we asked were given somewhat vague answers but we just wanted to do what was best for our dd of course. They assured us at that time we would not lose parental rights so we agreed. We are now very, very worried we have not been given full information.
Her school should be doing a lot more to inform you about her future options and advise you on the agencies you will need to contact. They sould be drawing up plans for her immediately.
And these agencies do pay more attention when a request comes from school / university rather than if the request is made by the parent. I couldn't get social services support for DS until his University contacted SS themselves (with our blessing) to raise concerns and ask for support for him. Social services then undertook an assessment of his needs and determined he was eligible for Direct Payments so he can pay for 3rd party assistance in his case from the NAS.
I think a letter from her current school to your local social services ststing that she will be returning to live in her home area from (date) and requesting an assessment takes place before that date would be appropriate.
Connexions also need to get involved so try ringing your local Connexions and demand a Specialist Connexions SN advisor from your area visits her (they do travel). You may have to be very insistent to get one. There are many residential options post-19 that are funded by Social services. To obatin this you'll have to prove that there is no local FE College that meets her needs so a residentail placemnet is the only viable option that meets her social and educational needs.
Also, you can apply for your own assessment for her as for you as her carer under the (Care Act?? I can't remember the exact title ).
You should also consider contating any support groups in your own area or failing that the national charities that match your daughter's condition who should be able to advise you on what is available locally.
You can also apply to your local housing association for supported accommodation for a vulnerable adult.
The DWP will deal with me as I open all correspondence to them with the statement 'I am the DWP appointee for my son xxxx...).
The Local Authority will deal will me because I typed a simple letter from my son to them instructing them to deal with me as his 3rd party representative. You could do this if your daughter is able to physically sign or mark such a letter.
The Direct Payments company deal with me as DS instructed them to do so.
I would contact the Head of her current school and ask her to convene a multi-disciplinary meeting of all the agencies that are (or should be) involved with her to provide their inout to a Transition Plan. Those parties should include, you, Social services, Connexions and any medical people who may also be able to provide their input.
I would make that request to the HT in writing - and all my communications with any of these parties would be in writing to preserve a record.
Just waiting until the end of her final term and expecting her to return home with no plans for the future and no support in place is just not viable.
Having just seen your reply to Nigel (above) about your DD's 'Looked After' status I agree with Nigel that you should definitely engage a Community Care solicitor.
This link tells you a bit about 'Looked After' children, what social services should be doing for her and how you should be involved. I know it's not your Local Authority but these guidelines will be national:
Hi wet, well firstly can I just say you have already told me 1000% more than anyone else has - thank you so much and especially so late at night. Unfortunately to complicate matters even further our relationship with dd's present residential school broke down some time ago and now they pretty much ignore any letters or email requests we send. The relationship broke down as they kept doing things like cutting dd's hair, taking bloods, losing her belongings etc without involving us as parents and when we complained we were treated like troublemakers. Ss did support us thankfully and dd Is finally moving to a new school and residential Unit Back in our own county - present one is out of county - next week but it has taken over a year for this move to actually go ahead. We will obviously be asking new HT - who appears fantastic - for all of this once dd is settled. Present school are very unhappy at losing dd as it is private and struggling for pupils due to lack of funding and as theY have an adult unit, most of the children stay there for a lifetime so we can easily understand why they haven't given us any of the mentioned information although we always said from day one as soon as dd was an adult we wanted her close to home. New school and unit is closer to us but still an hour drive each way. I will definitely contact Connexions again. We must sound totally dumb but how on earth are we supposed to know unless we are told? Never once has one single person mentioned any of this to us. I have emailed dd's social worker today to ask for a copy of the transition plan if there is one in existence. Wish us luck - definitely feels like we need some. Best wishes to everyone.
You may find things improve when she changes school. I suspect the problem is that she is classed as 'looked after', yes it should get you extra services but it does make it harder for you to have a say. I wonder whether she can be 'un' looked after?
As a comparison ds1 will need lifelong 24 hour can and we have been told that we start discussing transition to adult services next year when he is 14 at his annual review.
I vaguely remember that the book growing up severely autistic they call me Gabriel discusses the transition to adult services.
Agree get legal advice. Your child should get legal aid in own name. I would try a firm like Irwin Mitchell as I know they do work on guardianship, court of protection and have done a lot of cases about cuts in social care etc.
One option I heard about recently was putting your child's name on the housing list in your LA. Check this out with the lawyer.
As far as the looked after child status is concerned, this applies under the Children Act but as far as I know that only applies until 18. Once she is an adult I can't see how she can be a looked after child. She will be an adult and come under Mental Capacity Act. That Act makes it clear parents should be consulted if the young person does not have capacity themselves.
Many many LAs are looking to cut costs at the moment and I have heard lawyers say that in years to come they expect young adults to end up back with their families as the care system is just crumbling.
I would get some legal advice now.
I found this case where parents were not consulted and the LA choice of placement quashed due to lack of consultation, so you do have the right to have a say.
R (on the application of W) v CROYDON LONDON BOROUGH COUNCIL (2011)
 EWHC 696 (Admin)
QBD (Admin) (Ouseley J) 03/03/2011
A local authority's decision that a young adult who lacked capacity within the meaning of the Mental Capacity Act 2005, and to whom it was obliged to provide accommodation under the National Assistance Act 1948 s.21, should be moved from his existing placement to a different facility was unlawful where it was made following insufficient consultation with his parents and the existing service provider, as required by the National Assistance Act 1948 (Choice of Accommodation) Directions 1992.
The claimant (W) applied for judicial review of the defendant local authority's decision to move him from his accommodation placement.
W was a young adult with autism and learning disabilities. He lacked capacity for the purposes of the Mental Capacity Act 2005. He lived in accommodation (H) with facilities for young people with behavioural difficulties, paid for by the local authority pursuant to its obligation under the National Assistance Act 1948 s.21. In March and June 2010, the local authority assessed W's needs. It concluded that H was no longer suitable as it did not encourage his independence and was overly restricted and isolated, but also because it cost £4,800 a week, more than twice what the local authority would usually pay to accommodate someone with W's needs. In July 2010, the local authority informed W's parents that a review and assessment had been completed and that it was necessary to hold a best interests meeting to discuss the issues identified. On the morning of the meeting, W's parents were provided with copies of the assessments. H was not represented at the meeting because of a misunderstanding about their availability to attend. During the meeting, W's parents objected to their late receipt of the assessments, and pointed out some errors in their content. It was their wish that W remain at H as he felt safe, secure and happy there. In August 2010, the local authority gave H the required notice of its intention to transfer W to alternative accommodation. W's parents later wrote to the local authority raising their concerns about what had happened and stating their view as to the appropriate accommodation for W. H also responded to the assessments.
W contended that the process of consulting his parents and H, as service provider, for the purposes of the best interests meeting had been inadequate. He submitted that the local authority's decision to move him from H had been taken before the July meeting and that insufficient information had been provided in time for his parents to respond. W further argued that the views of his parents and H had not been taken into account, contrary to the National Assistance Act 1948 (Choice of Accommodation) Directions 1992.
HELD: The local authority's decision to transfer W from H had not been taken before the July meeting. The local authority clearly had a firm but provisional view as to the unsuitability of H as a continued placement, but there was no evidence that it had not been prepared to consider the views of W's parents as to the continuing suitability of H and their wish that he remain there. The local authority had listened to the parents' views and there had been discussion about the problems at H to which they had responded (see para.37 of judgment). The consultation had, however, been inadequate. The local authority had known that the question of whether W should stay at H would be an important one. There had been nothing in the local authority's letter inviting W's parents to the best interests meeting to alert them to the issue of how far the local authority's thinking had gone as to H's lack of suitability and the cost of maintaining that placement (para.38). W's parents should have been involved in the earlier assessments of W's needs and they had been given insufficient time before the July meeting to consider and formulate their responses to the proposal that W's placement at H should end. The local authority had taken its decision to terminate W's placement with H and the matter was effectively closed before his parents had presented material on which they wished to rely (para.39). Moreover, the views of H, as service provider, would have been valuable (para.40). The local authority was entitled to terminate W's placement because of the greater cost or because of the view it took of the nature of the place in relation to what it assessed were W's needs. However, one of the purposes of a consultation process was to enable other views than those which it formed on a provisional basis to influence it (para.41). Even if their points were ultimately rejected, it was important for W's parents and H to know that they had been understood and taken into account. The decision to terminate W's placement at H was, accordingly, quashed (paras 42-43).
For the claimant: Mr Cragg
For the defendant: Miss Scott
For the claimant: Irwin Mitchell
For the defendant: In-house solicitor
Hi Saintly and Agnes, Thank you so much for this! Starting to feel a bit more hopeful already although all this talk of things should have been done at 14 is worrying to say the least as dd is 18 in August. I feel such a fool for trusting everyone but how on earth would we know when we dont know anyone else like us and of course nobody mentioned anything about what we needed to do etc. We just assumed SS took care of everything! I emailed yesterday morning requesting a copy of the transition plan - if there is one - and details of what needs to happen to apply for a supported living placement for our dd close to home and copied in 7 people from SS and not one of them has replied! Think legal advice is a good idea if we can obtain legal aid. Will make some calls and see.
Mega thanks again and wish me luck!
social services are usually hopeless. A lawyer is a good idea because ime SS don't do anything unless they HAVE to.
Good luck - but you may find a big change with a new school - school's are usually onside.
I'll message you later, but I only know about what happens in Scotland. I'm just posting here so I don't lose your details.
Hi raffles. I cant really offer any other adviceas there is already some good advice on here but wanted to add my sympathy. My DD will also be 18 this year and in spite of having a Transition plan since she was 14 (which doesn't have anything remarkable in it - we hope she can move from the local SEN school to a local private SN college but she will stay living at home with us ftb) nothing has been done. I had a letter from the Adult Social Care Transition worker last October saying that a referral has been done to the Adult Social care team to assess DD's needs, but so far nothing has been done. I have chased it up once, but still nothing. DD has complex health needs as well as severe learning and physical disabilities, and our home respite package which is provided by the PCT is due to end on her 18th birthday - but as no assessments have been done by SC or health, I am finding it hard to see how a replacement package will be in place in time for her 18th birthday.
I do know that they will allocate DD her own social worker ( as the one we have had in the past works for the Disabled childrens' team - so she won't continue)but am confident that me and DH will be involved in any decisions about DD's future.
I too am quite concerned that we are being ignored - but have already got some good legal advice from a local firm of solicitors who take on care package cases and DH went to a Cerebra Transition conference recently where a solicitor called Luke Clements (who specialises in this area) gave a talk on the legal aspects. So we are well armed with our legal rights, but like you, we just want to try and sort things amicably, without having the stress of going down the legal route.
If you can get to a Transition event run by one of the big charities such as Cerebra or Contact a Family, I'm sure you will find lots of useful info.
There is an event in Solihull, Birmingham on 24th May run by Progress Magazine. Don't know whereabouts you are but if that is any use to you, let me know and I will post further details.
Also google Progress Magazine as you might find some useful info on their website.
Well what a great bunch you all are and I can't thank you all enough. Agent would love to hear from you when you have time and blue bus you sound like fantastic parents too and experiencing similar problems. Why on earth do they make things so difficult? I don't know about everyone else but we are so sick of being treated like second class parents! I have taken a bit of everyone's advice and here is what I have achieved just today:
Emailed local community care specialist solicitors and they are hopefully calling me tomorrow.
Lady from our Adult Disability services has contacted me following my email and is arranging a meeting with us for mid May.
Dd's current SW, her boss and the manager of dd's new residential unit coming to our home for a meeting on Monday next week.
Got our local councillor involved as well as SS quality assurance dept who now want to be given all info regarding dd's case.
Not too bad for one day methinks and all down to you fab people.
Thank you so much - think I will now have a better night's sleep tonight.
Will definitely be googling Progress blue bus as we are only about one and a half hours north of Solihull.
Mega thanks again everyone and do let me know if I can offer any help to anyone following our meetings etc. With any info we obtain.
Wow - respect! You deserve to sleep well tonight.
Stick around. You'll be an expert in this area soon and you never know when another Rafflesway may come here in the future and ask the same questions as you'll have the answers for.
Definitely will wet and again mega thanks for pointing me in the right direction. I feel like a woman posessed now!
I always feel its best to try and work together. If you network and form good working relationships thats half your battle.
Google about Best interest meetings. These are for people who lack capacity.
Ask for a carers assessment. Then you will get a social worker in your own right.
Research all the local living options/ residential service providers (they do supported living as well these days). Look into individual bedgets and direct payments.
I don't know smallprof, with the cuts I have found that SS will try and provide less than the bare minimum. They tried to cut ds1's care plan last year and only backed down when I pointed out they were behaving illegally.
I had a useful chat with someone from the Disability Law Service www.dls.org.uk/ Telephone: 020 7791 9800 when seeking a residential placement for my son after residential special school. They offer free telephone advice. You may have to leave a message but they will get back to you.
I got myself appointed as son's deputy for finance and welfare - this is onerous and you may prefer to get a solicitor to act for you. (Think it is harder but not impossible to get appointed for welfare).
I think you can still apply to the Court of Protection for a "best interests" judgement even if not a deputy. Best of luck
Join the discussion
Please login first.