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

[MumsnetGuestPosts]

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.

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.

[Fanbelt]

Hi, my son is 10 y/o and has some SEN associated with Aspergers although he isn't officially diagnosed. I am becoming very aware of how we can support him as he makes the transition to adulthood, especially as he is starting to go through puberty, so read your post with interest.

Regarding deputyships, I also happen to edit a website that has some legal information on this which might be helpful - see here (I'm not trying to plug the website, it's completely free to access etc. and I think the info is helpful): www.lawdonut.co.uk/law/personal-law/powers-of-attorney/what-is-a-deputyship-order-

[alwayswaving]

My daughter is 43. Just about to go down the deputyship route as social worker has advised it as looking for new place for her to live. Am soooooo stressed and No idea what I'm doing.

[Samcro]

Devilishpyjamas your post is interesting and might explain why its never been suggested to us.
we already have the deprivation of liberty in place and they do the "in the best interest " when needed

[iwantanewcar]

zzzzzz - spot on.

[MayhemandMadness]

Zzzzz - ours is ok, has everything there with links through to other websites.

Unfortunately, this is always going to be a postcode lottery, when they leave it to local councils to decide layouts etc. If it's no good, complain and kick up a fuss, get them to sort it.

[supamabel]

Brilliantly written, as always sis, Max is so lucky to have you two as parents. xx

[MayhemandMadness]

The website design is pretty bland tbh but the content is good. Although I typed layout above, I did mean content - blame lack of sleep.

I am simply pointing out that just because its poor where you are, that isn't the case elsewhere in the country. If your local offer isn't up to it then complain.

To answer your question though, specifically, it links to support services, social clubs, further support with education questions which I had. Some of it was just very basic information but always had contact details so I was able to pick up the phone and fo the rest. There is alot on it, most I don't need but others will.

[Frescolita]

Hi,

My brother has Down's, and has been living in his own flat for the last couple of years. He's 31 now, and it's done him so much good. It's increased his self confidence and his skills enormously. I could fill my own blog with anecdotes from the experience, but it's definitely worth the fight to get what you want. My parents had to push for years, and did the legal thingy too. The benfit now is a smoother transition for all, as his care team shared with us that frequently people with SN only end up in their own place or in a supported living spot once their carers (parents) die...
If you are in the N.Lanarkshire area then I can give you some company names. His support team are subcontracted via social work and they are truly amazing.

[dmccc]

Meiraya

I resent that comment I am a therapist have taught both special needs and consult privately in London and spend a lot of my time advising families and schools on not only legal but socio- economic and academic issues most professionals that deal with special needs children and adults are usually the backbone of the British educational system a point of call and supportive force for children especially when at school and should be cherished as without them most children would be left with a caring constructive and forward moving influence outside of the home.

[MeirAya]

dmcc I didn't mean to make the more informed professionals feel offended. The key words here are who deal with most of us and probably.

Btw, I've spent the last 27y working in and around the local education, social care and health sectors. As a parent, I would assume the professionals we see know 'all this stuff'. But as a colleague, I know for sure that most don't.

[MeirAya]

i am a therapist... have taught both special needs and consult privately

I suspect this is where we diverge. My experience is of the state system- dc who rely entirely on the NHS, LA, and local maintained schools. Most will never get to see a therapist regularly- and many barely get to see one at all.

Even for the minority who do, their parents will (if they're lucky) be given brief OT advice at an 'awareness day', handed some physio handouts, or shown a link to a SLT website.

[MeirAya]

The nearest large maintained special school is amazing. But their small therapy team has literally hundreds of children to deal with.

Transition planning could very easily need parents to use the court of protection, Tribunal system, judicial review of respite withdrawal, fight illegal housing decisions, combat benefit withdrawal, correct UKBA errors... and more.

None of that is within the 'ordinary' health/education/social care professional skillset. Though I take your point that many go above & beyond and so may well have a string amateur interest in such things.

[MeirAya]

strong

[Devilishpyjamas]

My experience (in the special school system) is that the professionals involved with my son (who know him & us very well - we have monthly multiagency meetings) can't be that much help with transition as it moves out of their remit. His SW for example (who is excellent) has been trying to get adult services involved for over a year. Adults here firefight & don't seem to turn up until about a week before someone turns 18. It's useless. Once he turns 18 his excellent current SW, who knows him so well will not be involved. Without adults turning up there can be no transition.

[DownsSyndromeAssociation]

The Down's Syndrome Association (DSA) are aware that families have a wide range of experiences when dealing with transitions to adulthood and have a helpline (0333 1212 300) open 10am-4pm Monday to Friday and can also respond via email ([email protected]). Our helpline and all email queries are answered by a team of Information Officers who can offer information and advice about the processes around decision making post 18 and young people’s rights under the law regarding support and services.
Please get in touch and we would be happy to help.