Guest post: "Our son has Down's Syndrome - as he transitioned to adulthood, support disappeared"
Parents and carers of children with special needs who are transitioning to adulthood need a comprehensive information hub, says Sandy - who works here at MNHQ
Posted on: Mon 13-Jun-16 15:25:58
(45 comments )
My son Max is a bright, exuberant 23-year-old. He's a bit of a diva, loves a musical and, if I'm completely honest, he's a tad bossy - and he also has Down’s Syndrome. He's the sunshine in our family, and he's given my husband and I (and his younger brother) a different way of looking at the world.
Recently I asked him: "If there was a button you could press that would remove your Down's Syndrome, would you press it?" He was baffled, and quite dismissive. "Er, no, I would not. Look mum, I know some people are angry that they don't have Down's Syndrome, but what can I do? They just need to accept it and move on."
This is Max's take on life. He's certainly taught me a thing or two about perspective. He's introduced us to the wisdom of living in the moment, the importance of never underestimating yourself, the power of charm and the benefit of a pre-breakfast disco. But he wakes every morning to face huge challenges. On top of the Down's Syndrome he has a hole in his heart, low muscle tone, and a host of chronic ailments that will get worse with age.
Caring for a baby and young child with Down's Syndrome was challenging at times (this may be an understatement), but as a rule our family felt that there was a defined course for us: provision wasn't always brilliant or easy to come by, but we knew what was out there and what we were entitled to, and it felt as though there was a fair amount of support from both official bodies and third sector organisations (charities and the like). Education up to 19 was sorted (with a few heartaches along the way) and he lived at home with us just like any young child. And then, suddenly, readily available advice and support seemed to drop off a cliff.
It's become very apparent to our family that the transition from child to adult can be daunting. (I know many posters on the Special Needs board have been saying as much for a long time.) We know we aren't the only family struggling to cope. There is an army of carers who are in exactly the same position, or who have been wrestling with these dilemmas for longer than we have.
One thing that absolutely floored me a few years ago was finding out that when Max reached the age of eighteen, all rights over decisions regarding his welfare and finances passed to our local authority. They suddenly acquired the right to specifically overrule our wishes and make decisions on his behalf. This has far-reaching consequences, from the big stuff like living arrangements to the little stuff like obtaining a blood test result over the phone.
It seems to me that one thing that's missing is a truly comprehensive information hub for parents and carers of children with SN who are transitioning to adulthood.
The only way for parents to stop this is to obtain Deputyship from the Court of Protection (COP). For us it was a two-second decision (although it's not a road everyone may choose to take). It can cost a fair bit of money in solicitor's fees, but you can do it yourself - which is what I did. (The COP has a very supportive helpline; you can find out more about the process here and here.)
We stumbled over this incredibly important piece of information; nobody went out of their way to tell us about it. It felt as though the assumption in the 'system' was that when Max reached 18, we'd wash our hands of him and be happy to hand over our son lock, stock and barrel. Of course, it's crucial that there are safeguards in place for those vulnerable adults who need state care, and I'm glad those safeguards are there. But there was something impersonal and almost cruel in the fact that this would have happened almost without us being aware of it, if we hadn't been the kind of parents who beavered away frantically gathering information - which takes time, energy and spare resources that not all families have.
And it's not just the practical things you need support for; there's no getting away from the fact that some of the things our family has to face up to are just extremely sad, and we could do with support and practical suggestions for handling those aspects too. Max wants what we all want: a job, friends, a partner, his own home, children, a driving license. And the truth is that he will never be able to have some of those things. Trying to find the right words to gently negotiate around his goals and discuss how realistic they are for him is one of the saddest things I've ever had to do, and it's something I'll have to do for the rest of my life.
We're trying to jigsaw together a life for our son, but I fear we're going to fall well short on delivering any of his dreams. He has done so well and I'm incredibly proud of him. He completed a three-year residential course at Derwen College in Shropshire, a fantastic campus environment where students can safely live, work and socialise while being encouraged to take full ownership of their lives. He's currently studying for a BTEC in Performing Arts at Chickenshed Theatre but he is struggling to create a social life.
He'd dearly love to return to a safe, supported campus environment where he can tackle his extra challenges effectively. There are some good independent living places out there - we've got our eye on one - but they are very limited in number and ridiculously hard to find. This particular decision is probably the hardest one I've ever faced and it feels as though my chances of getting it right are extremely low.
It seems to me that one thing that's missing is a truly comprehensive information hub for parents and carers of children with SN who are transitioning to adulthood. It could include a database of every special needs organisation in the country; reviews of services and facilities to help others make the choices that are best for them; and crucial pieces of information (like the Court of Protection Deputyship process).
Max has always driven the bus, right from day one. I'm just doing my very best to get it right for him. I fear I'm not doing that right now. The last year has confirmed to me something MNHQ has thought for a while thanks to the input of MNers, which is that we need to host more content on transition and adult children with SN. So do please add ideas/links to useful organisations and resources and tell us what has worked for you, or what sort of thing would be useful to you if you're in the same position as us.
Thank you for writing that Sandy, and lots of luck with the next stage in Max's life, I really hope he finds his niche
Thank you for sharing your story. It made me laugh and made me cry. I am truly shocked that there is so little information out there that many parents are not even aware that they lose all rights to decisions in their children's welfare at the age of eighteen. This is scandalous.
Your son looks so happy in that photo, I wish you all the best in helping him realise as many of his dreams as possible. I'm sorry I have no advice to offer, but you sound like a fabulous mother
and I agree that what parents need is good information and some transparency as to what IS available. (I am also intensely jealous of the pre breakfast disco all music is firmly switched off with a stern "no music" from my Lord and Master )
I'm enormously grateful for the heads up about legal pitfalls ahead . My first reaction is how dare they not even mention it to us ???? And my second is how much is it going to cost ??? Because ds turns 18/19/20 in a period when I will have multiple children at university and we are going to be in lean times anyway.
that is lovely.
we are about to hit the after college stuff and Im dreading it.\thanks for the heads up about COP i have never been told about that so will start looking into it.
Thank you Sandy, and best wishes to you and Max.
I couldn't agree more that there needs to be a one-stop shop for information for all things SN, including, but not restricted to, the transition to adult services.
I was aware I needed to obtain the deputyship (my dd1 is only 11 so looking to the future), but only by word of mouth - my uncle has a close friend whose daughter has disabilities, and they have been through the process. Otherwise it'd be one more thing to scramble about and fix as it arose - there's certainly no general ethos of knowledge-sharing from anyone in a position to know (ie professionals, rather than parents who have been-there-done-that and are now busy moving into the next thing)
The professionals who most of us deal with probably know sweet f all about the legal side of transition.
Teachers, speech therapists, paediatricians- if you're lucky they might have a basic working knowledge of some official things affecting children- eg DLA, statements/EHCP, respite.
But even for the slightly harder bits like how to go to Tribunal, the rules for claiming carers allowance / extra tax credits, getting a disabled facilities grant - it's not their field. Social services mostly just want to make you go away. And the welfare advice centres are shrinking as I speak.
GPs do a fair bit of dementia care, so may well know a bit about stuff like court of protection, capacity assessment, lasting power of attorney. But they won't get drawn into what they see as 'legal advice', as they can't match a typical 'oh yes, been around the block with this for Mum' carer's expertise.
it has confused me as my dd is 21 and we still have full responsibility and are involved with all decision making.
no one even warned me about deprivation of liberty until I got a phone call about it
Thanks for writing this Sandy.
Like Samcro I'm confused my three are 22 and 19 and deputyship is not something I've heard of.
Thank you Sandy and best of luck to all your family.
I'd never heard of the COP either. Totally agree about a central pool of resources and info for young people/adults, it would be great if MN could facilitate this.
As an aside you look waaaay too young to have a 23yo!
MeirAya, yes I agree.
I guess I was thinking more that it would be nice to have any sort of continuation of care.
When dd1 was tiny, and going through dx, then most of my information came from her Portage worker - a very experienced lady, who was most definitely out to get the most for each child,,and who didn't care whose feathers she ruffled on the way. She was worth her weight in gold. Sometimes because of the things she told me not to do (accept first answer, for eg) as well as the things she told me I could do.
But once the dx was there, that support, which had been all encompassing, from health needs, to advice on schools/ statementing, to pointers on charity funds, products etc, vanished. (Portage was withdrawn soon after dd1's dx, because we chose an ABA pathway - and that's another thing that of course was never mentioned to us, we had to find out about that ourselves!)
And I've never had anything close to it again, tbh.
Dd2 had a private dx, so there was little by way of ongoing pathway afterwards.
Ds got his dx at the end of last year, and as soon as he had it, he was signed off from all care. He is 3. And there is nothing available apparently, to help with any of the above.
There are, of course, many, many things which I've learned about along the way - some from here, some from the (rare - most parents don't do drop off/pick up at dd1's school) coffee mornings at dd1's school, some from a chance reading of the newspaper or similar. But just stuff like about Direct payments, or short breaks, entitlements and help with a variety of forms (DLA etc) - absolutely nothing officially given. And I have 3 disabled children, yet nothing at all has ever been mentioned to me officially since dd1 was about 3.
And I don't expect anything will be, either.
Which is why I said that it would be nice to have the one-stop shop, not restricted to the adult transition, but to cover all the rest of the stuff that goes on too.
Thanks for posting this and all the very best to you and Max. I have a DS with MLD aged 14 and have an increasing sense of gathering gloom about his transition to adulthood. School have told me to get an ASD diagnosis if I want any hope of help post 19. I know that's going to a be a long and stressful process. My GP basically told me there was no help for adults with LD in my area, in that cheerfully insensitive way some Drs have. A Mumsnet hub of info would be fab.
Tell me about it.
My son is 17, has just moved into residential. He has complex needs & requires 2:1 care when awake so that care package is expensive. Because he is 17 he is funded by children's services with some CHC funding as well. We have been inviting adults to monthly meetings for over a year - they do not attend. However I am sure that as he turns 18 they will appear & decide his placement is too expensive (I am certain about this because they do this to everyone)
His life has improved immeasurably since moving into his new placement - he is back doing all the things he likes but hasn't done for a year or so. It is very near us and I can visit him several times a week
- we both need that contact. I feel I am in the lull before battle with adults. Still, it's giving me time to swot up on a The Care Act & Human Rights Act.
My son spent the last year at risk of being sent into emergency provision. If his support is reduced or changed that will become likely again.
I agree a hub is needed. Locally at least, we need children's and adults to talk to each other - not leave contact with adults until the week before the 18th birthday- it's a joke.
Pandas our experience is the same, there has been NO help except for in-school-TA etc. (though school are great) What can users do to support MN getting this info together. Mine is only just finishing primary but I would really welcome not just a hub of basic info but also somewhere you could ask questions or talk about that information.
For example I've skimmed (while creating 7kg of bolognaise) the linked stuff on becoming a deputy for your child. Do I understand it that it's £400 to apply, plus a possible £500 Court costs, £100 assessment costs AND £320 annually to keep it going . Holy Fuck! I'm particularly irritated by the information that the money can be taken from "the client" rather than the deputy, so presumably out of Ds's benefits???? No one is to take this as fact as I have to bag up bolognaise now and can't re-read it....but Yikes!
Sandy - dd2 (12) has CP and is currently writing a story about a girl having to choose whether to accept a cure for her condition or turn it down. (She turns it down).
Hoping you and Max find a great environment for him to thrive - and enjoy more pre-breakfast discos xx
Loads of luck to you and Max, he sounds delightful.
That was an interesting post. I always assumed that independent living facilities were a 'given' where appropriate, like a continuation of school. I hope you manage to get the support Max needs.
The main problem with deputyship is they're not keen to dish out health & welfare ones (financial is no problem). If they do grant a health & welfare one they can be easily overturned as soon as there's a disagreement. Trying to decide whether it's even worth applying. Also not sure whether we need to wait until 18 or can apply this year and have it ready .
Will do financial but lots of people say not to bother with health as it's all best interest meetings.
I did consider going for the health and welfare deputy ship but the cost and the low granting rate put me off. My son does not have mental capacity and decisions taken are now done in his "best interest". I think if there is any dispute that would end up in court , the court expects all local avenues for resolution to have been followed. I have had a positive experience regarding challenging a not for CPR decision by calling a best interest meeting with people attending who really know my son plus the resuscitation expert and GP. THe Mencap adviceline were also helpful. I think it helps that I studied law and I will not hesitate to enforce my son's human rights.
Thanks so much for all the lovely, supportive comments. It's great to have such positive feedback and to realise we are not alone.
bialystockandbloom I can't believe you think I look way too young to have a son of 23. This made my day! <blush>
I'm really glad I've alerted many of you to the information about being a Deputy. Even though I did apply with my DH to be a Joint and Several Deputy for Max I'm not an expert and realise it's a decision everyone needs to make on an individual basis.
Mencap and Disability Rights UK have some good helplines, so taking a look at what their sites offer and perhaps having a chat with them may help you make that decision.
Thank you so much for your comments on the information hub, please do keep them coming.
Sorry havent got time at the mo to read all the replies but a database does exist already - under CandF act 2014, every LA has to have an online directory of services in their area - its called the Local Offer. Check there first and if its not upto scratch then start complaining and get them update it. Its meant to contain info on education, health and social care provision.
Argh sorry for the tone of previous post, just short of time
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