Jack was born with ATRX syndrome (Alpha-thalassemia X-linked intellectual disability) which on its own has its difficulties. He attended a special school and had no issues there at all until it was time to leave at 16.
Jack’s anxieties were heightened more and more on the transition from school to college. He only visited the college once and on starting there, he found things very difficult. By this time he was known to CLDT team and was put on antipsychotic drugs.
Jack managed 18 months of college before they eventually excluded him because they could no longer support him. The next 18 months support came under the social care umbrella where they threw all kinds of support charities at him. It was inconsistent, which is the worst type of support when you have needs like Jack’s.
He hated it and his difficulties got worse to the point where he would go into town alone (as he was encouraged by the social care team to do) and get into trouble. The social care team didn’t like this and tried hard to control his life, activities etc. The psychiatrist was shelling out the drugs but wasn’t interested in Jack as a person at all. She prescribed 3 different drugs that he had extreme effects from, which added to his anxieties.
I had asked for an autism assessment since Jack left school, but it fell on deaf ears.
The events leading to Jack’s first section(2) under the Mental Health Act (please bear in mind that Jack has never been diagnosed with a mental health problem) was the professionals believed that Jack needed help. To our regret, we went along with this and left him there for 28 days.
On discharge Jack had no diagnosis (autism or mental health), no care plan or aftercare. My husband had to give up his job to support him with me. They stripped Jack of all the meds they had previously prescribed and we had to wait 8 weeks to see a psychiatrist. But by this time he was finding things even more difficult.. My husband returned to work after the 8 weeks and Jack’s behaviour became challenging again and aimed at me a lot of the time.
Social services offered a flat for Jack. There was no transition, we weren’t allowed to see it beforehand and we were given just three days to prepare Jack for the move. We dropped him off on a Sunday afternoon. We spent 2 hours cleaning what the professionals called the flat. It wasn’t a flat. It was a conservatory added on to a bungalow that housed two other residents. In the conservatory Jack had a seating area and a small kitchenette. He had a single bed in the corridor between the conservatory and the rest of the house and a bathroom at the end of the corridor. We left him with 2 guys that hardly spoke to us. That evening it was highlighted that it was the wrong place for Jack but he was kept there for a further 2 days.
Jack was so anxious and broken in the conservatory that the psychiatrist waded in there and then and sectioned him again. He was sent to an ATU in Birmingham. We live in Gloucestershire. I was not consulted at any point but the official papers says different! Jack pleaded with them for a second chance in the conservatory, even though he hated it and was very frightened there. He didn’t get one! After being in Birmingham for 2 weeks and after a lot of history written by myself, the ATU confirmed the diagnosis of autism and ADHD. Jack responded well to treatment and now has 3 days home leave each week. He is now waiting for a care provider to produce a team of people that can support Jack to come back to Gloucestershire.
Jacks section ended on 28 March 2016 but this has been renewed because of the wait for a care package to be put in place back at home. We see the section being renewed indefinitely, not because Jack needs to be under section but because the LA are making no effort in putting a care package together. They don’t have to spend a single penny whilst Jack is in the ATU and we get the impression they would like to keep it that way.
The hospital are now trying to undermine our experience of Jack. We dont get any problems when Jack comes home on leave, although he gets very anxious prior to a home visit in case they cancel it. A couple of weeks ago, they cancelled Jack’s weekend home and Jack cleaned the whole ward in an attempt to get them to change their mind. Unfortunately, the unit are now saying they don’t believe our reports of Jack’s behaviour at home. I know from other families that this is a familiar tactic to discredit families, it still feels very threatening for Jack’s future.
Jacks time in this ATU has really affected him. The tribunals, the reviews have all taken their toll on him. It will take a long time to forget. Their control over him and us is disgusting, they pull the strings and we jump! I’d like to add being taken from home and sectioned in two different units could all have been avoided if a diagnosis was offered to him here in the community, but he had to be sectioned to get it!
Jack’s young life has been ruined all because the professionals couldn’t be bothered to get to know him. Unresponsive. A cocktail of antipsychotic drugs. No wonder he doesn’t know what day of the week it is
Jack hasn’t lived yet. He hasn’t had a friend and feels very unsafe at the moment
7 Days of Action 
This is exactly the situation we RNLD’s in community teams need to avoid but this can only be done from a therapeutic and humanistic stance rather than a medical stance. The CLDT could have been much more instrumental in sourcing a more appropriate home for Jack but the real problems lies in the total lack of preparation and foresight as he approached adulthood.
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Absolutely heartbreaking! We so very nearly went down that route with our son when the LA wrote to our GP without our knowledge and asked her to refer him to Forensic Phsycology. Luckily for us she refused, as inappropriate, and also mentioned it to my husband. We took action by arranging a private Autism diagnosis through our GP and information from NAS. On our first visit, before diagnosis had begun, the specialist recognised our son as presenting Autism! Diagnosis confirmed he has ASD. At the time of diagnosis our son was 25 years old!! He spent all his young life being misunderstood and very nearly criminalised. It is disgusting the trauma and brutality of the system. It’s like parents having to watch their sons/daughters tortured in front of them! ATU,s clearly are not the answer, they are cruel and barbaric. The LAs need to listen to families and offer support in a timely manner to avoid this inhuman, so calle, treatment.
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Surely keeping people from their families only makes their anxiety worse.
Their challenging behaviour in the first place was the only way left open to them because no one is listening to why they are so unhappy. Parents and families often get most of the flack because we all hurt the ones we love when we are angry.and upset.
Families cry out for help and then the help is given with cruel restrictions. Terms that include separation. Separation that causes more anxiety. Cue the medication. Medication that have not been tested on people with learning disabilities and often makes the situation worse..
These people in ATU’s are so young. Young lives wasting away in ATU’s. This cannot be allowed to continue in this day and age. It smacks of Bedlam and workhouses and prisons. If LA’s are so keen on ‘out in the community’ for their day service provision, why is’nt the same yardstick used for helping people with LD who are wasting away in ATU’s
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These are such tragic scenerios. The services that are available for our sons and daughters after education often do not meet their needs. Consequently they then become frustrated and anxious. The only way open to someone who feels no one is listening to them is to get angry and hit out. Usually to the people closest to them. We all hurt the ones we love when we feel helpless.
Parents and carers then in desperation ask for help. Sometimes the help is there and problems are solved. However more often than not the ‘challenging behaviour’ becomes the only problem that is acted upon and the person is sectioned. The help then becomes help in their terms not help in the family’s terms.
We are now in the ‘catch 22’ situation. The psychiatrists see ‘home life’ as the problem. Forbid the family to see their loved one. Loved one misses and pines for their family and so becomes more anxious. Cue the medication. Medication that may not be suitable or even make the situation worse.
I feel desperately sorry for these families. Their sons and daughters are so young. Lives wasted. My own son is in his forties. Transition for him went fairly well.
His problems began when day services were cut to provide alternatives ‘in the community’. Added to that was the years he spent on epileptic medication that doubled up as a mood enhancer. A mood enhancer he did not need. He was not then anxious or menatlly ill.
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Reblogged this on Same Difference.
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I would question whether detention under the MHA on the grounds of there being no suitable alternative accommodation and support is lawful, certain criteria have to be met in order to satisfy the imposition of a Section under the Act and if those criteria are not met a Section cannot be used to detain the patient. The Code of Practice also states that the the least restrictive option that maximises independence should be used: ‘Where it is possible to treat a patient lawfully and safely without detaining them under the Act, the least restrictive option should be used.’ [Mental Health Act 1983: Code of Practice].
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I would have turned the place down, it’s that simple. A conservatory knocked up to look like a flat is not good enough for anyone
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Reblogged this on danutag57.
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The situation with Jack seems unbelievable but unfortunately too true. The situation about inadequate planning from education; the lack of any contingency planning – when we all know things will happen in any family and many children go through times of difficulty -, the inadequacy of community support, the “medical response resorting to treatment with anti-psychotic drugs when Jack clearly had anxiety – for good reason! – and then the side-lining of the family when they should clearly be full partners listened to – all leads to failures making for most of the difficulties for Jack. However he ends up with the label. I continue to feel that surely noone there should be not believing the family reports on behaviour at home if they’d seen the pictures or clips. I also agree that this doesn’t seem legal as it is not the least restrictive option and leaves us with the question of how are authorities held to account on their duty to provide appropriate community supports and for their current failure. If Jack has been on S3 surely health should in any case be paying for his community support? There are good providers out there but they need involving at an early stage to plan appropriately – and there’d be lots of chance to be working with the family when Jack’s home too to plan and involve Jack. This is so frustrating as Jack’s life drifts by and he risks yet more labelling. Any of us would be venting our frustration in a similar situation – and I’d think it’s only his family involvement that is stopping him from ending up with an escalating problem. It also makes one fear for all those who don’t have such families if this is what happens when you do have one. I hope this week of action can bring to attention such failures and maybe start some local accountability and urgency.
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Well said, Rose. WE all know of other authorities where the only way to bring them to account is to kick them into the legal arena; but as we know, this is not as easy as it sounds. Firstly, the family has to be so psychologically strong as to be able to cope with such a process – for it takes a lot of guts. It takes a lot of commitment; and dare I say it, a lot of bloody mindedness, which, in its own way can reverberate and be counter-productive for the individual if the Local Authority chooses to misuse the power that they have. It is also an expensive process, which may be on of the reasons as to why families don’t or won’t undertake it.
I know it’s a contentious issue, but I am a firm believer in the power of the Welfare Deputyships as advocated by the Mental Capacity Act, but of course, Authorities may oppose these for the very reason that intelligent, articulate, and determined parents are seen as a threat. While there may be a reluctance for the Courts to issue Deputyships, I honestly believe that this should be given serious review; and then parents, and families, may be empowered in advocating for the rights of their sons and daughters.
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Hi there, tried to but wasn’t allowed, the LA are dealing with it so he comes out under CTO and DOLs….I’m not happy but have no choice..
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It also takes a lot of money and finding the right lawyer prepared to fight the establishment with no tools. As process in COP/CA is inquisitorial appeals in COP limited to local high court now on best interests.
And deputyships now rarely given to family, cost and can be revoked at any time as they are being and replaced by court Official Solicitor that does what is in states interests. All rubbered stamped by COP for life
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Jack has done brilliantly given that he was left alone to cope in the flat provided, what a hopeless setting for him when clearly he needed support and obviously the reason he became even more unsettled. Three days at home is just great . Jack looks so happy and relaxed ,with a diagnosis and support up and coming there is every hope that the chaos of the last years can be slowly undone. Jack’s efforts through cleaning to win over staff are heart breaking, such utterly normal behavior from teens. Jack’s LA need to secure his release from the unit, it would be the cruelest of inactions that resulted in the section being renewed yet again.
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[…] So far, so good; but the DoLS require the organisation which is applying for a DoLS authorisation to restrict someone’s liberty, to certify that the person ‘has a mental disorder’; and to consider whether they should instead be considered for detention under the Mental Health Act. The MHA is much more wide-ranging than the MCA; while the MCA is exclusively concerned with capacity, the MHA provides for a plethora of situations in which people may need to be compulsorily treated for a mental illness, including where they are a danger to themselves or others, and where they have committed or are accused of a crime. Although the statutory guidance under the Act – the Mental Health Code of Practice – says that the person receiving treatment should be involved in its planning, that his or her wishes should be taken into account, that family and/or carers should be involved unless the patient asks for them not to be, and that treatment should be given the least restrictive way possible, this sits uneasily with the forensic, criminal-justice parts of the Act. Patients are also supposed to have support from an Independent Mental Health Advocate (IMHA) to enable them to understand their rights and to support any appeal to Mental Health Tribunal against continued detention. Yet even when the person is detained under civil provisions, the treatment regime for patients with learning disabilities seems to have a strong forensic flavour, along the lines of: demand complete compliance with a regime of generic treatment and prescribed behaviours, unmoderated by any reference to the person’s particular condition(s) and needs; and apply restrictions and sanctions for any failure to comply. Look at what is happening, today, to Eden and Jack. […]
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I suspect that a lot of these problems arose when the Institutions were closed and appropriate community based services were not put in place.
Imagining that private providers would step in was a fantasy really.
The NHS need to start providing community based services even small size homes instead of trying to pass the buck to ‘providers’.
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Providers, are already making billions out of such provision- Cambian, Lifeways etc so much so, they are being bought up by venture capital see https://finolamoss.wordpress.com/2016/04/07/venture-capital-and-nhs-care-services-our-most-needy-feed-our-most-greedy/
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As I keep illustrating, in my blog posts google finola moss, the mentally disordered, different, vulnerable like Jack, are being made cash cows.
The worse their behaviour is made by the state, the more money that can be made from them, that is the wicked, evil reality.
And successive governments, have conspired, to remove all accountability for services, which cost the tax payer billions, whilst the families, can get effectively,nothing for caring properly for their children.
All the services, are acting illegally, in breach of their statutory duties, and their common law duty of care in negligence, both to Jack and his parents, and, in breach of their Jack’s and parent’s right to a family life.
And, they are creating careers and making literally now billions out of controlling and destroying an ever increasing, vulnerable sector.
We cannot sue them, as there is no legal aid, no solicitor would take it on, on a no win no fee basis, as to prove is risky, as you would need full frank disclosure from documents, which are difficult to get, and often whitewashed, and experts which again all work for the state. You would also have to risk, the other sides huge costs ie HSC, LA lawyers.
So we, and more crucially, our children, are at the mercy of a ruthless, all for profit state, with no rule of law …………………..poor Jack, Ti Eden etc, and the Damocles Sword of removal to hell, hangs over our childrens heads, everyday for life, under MHA and MCA.
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This campaign is opening my eyes. Please continue to make these issues visible to people who didn’t know. Thanks to all of you, to Simon Duffy and to Finola Moss and to the people who are showing the alternatives.
Best wishes to Jack and his family. I’m so sorry. One of my sons has an ASD, I can’t imagine how traumatic and disruptive all this must be for Jack and all of you. Wishing you can get him home as soon as possible.
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All the painstaking research and guidance for transitioning people with autism and ld, produced from 30 or 40 years of government funded research is just thrown out of the window, when nothing is done the way people know it should be.
Support plans make the right noises, but don’t get followed, and to move a person without discussing first with parents ..?
In the end, services do what is convenient for them, and then see outcomes that damage people permanently.
Providers are driven by business needs, and care often is provider-centred.
We must have a new way, something must change.
Animals had animal rights people care for them, and we must care for ours.
It’s back to the drawing board, and a whole new design of support in suitable places near to families, in safe homes that people own.
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Why is the option of the vulnerable not living with their parents, or other family, not given ?
In UK, 14% OF 25-34 year olds, still live with their parents, and in most parts .of Europe it is much higher.
https://finolamoss.wordpress.com/2015/04/27/independent-living-disabled-penned-for-profit/
In the UK, as soon as they get to 18, the vulnerable, are removed, if at all possible, there are few facilities now to allow them to live at home, little home support.£ 103 DLA, and £62 Carers Allowance, as opposed to an average of over £3,500, and often far more paid per week to a ‘care’ provider.
AND, there is money available to ‘educate’ them up until they are 25.
Why is it, that those who would most prefer to stay at home, and need most to be protected by those, who are best placed to protect them, as they love, and know them, are removed ?
It can only be for profit.
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Sorry, too many nots, in that first sentence, it should read why is the option of living with family not given,? but I think you will have sussed that……………….
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Something I am more than suspicious of. Helping young people with special needs costs local authorities money and they will do anything to stop them spending this money. This is by doing nothing until the there is a relapse. This is known as the 3 Ds of LA care, Delay, Destroy and Deny. Or providing completely the wrong medication and support to cause a melt down. Then its off to Section land, which is free for LA’s. The NHS pick up the much greater tab. This can run into thousands a week and a lot of these “hospitals” are now privately run and they don’t want to give up their young people who are earning them thousands. To rub the salt into the wounds these private hospitals now cause themselves charities to save on tax.
I am truly sorry and sickened by your story, I am going through this myself with my son. Stay strong and one day the truth will come out.
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LA and HSCTs are spending literally billions of pounds, on the private medical and residential care of the LD/Autistic, so much so, that venture capital are buying up all this provision seehttps://finolamoss.wordpress.com/2016/04/07/venture-capital-and-nhs-care-services-our-most-needy-feed-our-most-greedy/
They are assessed on their support needs, and these are assessed at a maximum so that can be paid to private providers, on average over £3500 per week is paid per resident, some far more, but the care provided including medical, is basic ie supervision via minimum wage workers, and, nurse oversight and drugs, so the maximum profit can be made.
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Reblogged this on SandraSSP.
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I’m following Finola’s reasoning with interest here.You’re right, there are no EU countries where it’s usual to move out at 18. Even in the US, where moving out young was traditional, the young are staying at home. Pew Research put out some new figures recently. Highest numbers of young people at home since the 1940s.
The financial motives are probably driving this iniquitous system in the UK.
I hope that some academic somewhere will do for kids with disabilities what Sylvia Walby did when she showed the costs to the country of tolerating domestic abuse. Given these figures, it can’t be that hard to show that bad solutions cost more than supporting families the way they want to be supported.
Jack’s story just breaks my heart. I see my own son. The anxiety of a kid trying to please and cleaning the whole ward, and still not coming home. His hopeful face.
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The issue is the lack of reliable information and accurate figures.
We DESPERATELY need research here.
We need to know how many adults with learning difficulties are in care and how many are at home with families.
We need to know at what age they went into care and why.
We need to know who drives the decision to look at care; is it families or ‘professionals’.
We need to know what the triggers might be.
?Poor post education planning.?Family crisis.?Behaviours.?High physical support needs.?Money.
If anyone can facilitate distribution of surveys I’m happy to collate information.
Some years ago the NSPCC undertook a survey into child abuse which busted many myths.
We may well find we could bust some myths ourselves with a national survey.
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this is got, by asking each LA and HSCT in the what they know site on net, how many autistic/ld in area approximately, between 18-25 and how many are currently living away from their family supported by care and limit it to 2010-15.
This service is free, and will stay on net for all to view
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The costs to the country, can be simply worked out, and ARE huge, I know.
To have an autistic /ld at home living with parents, costs £103 DLA and £62 Carers Allowance.
There is no right to personal support, unless you go through a carers assessment, and then there is no duty to provide support, and it is rarely given, and if you are deemed sufficiently affected to warrant support, then LA will deem you cannot cope and are a risk to cared for, and remove them.
You will get education support up to 25, but any will be deducted from benefits.
by contrast a minimum of 3500 and usually much more, is paid per week to the private provider.
benefits and facilities to stay at home have deliberately been removed, on the back of cost cutting, but not to cut it, but to increase it substantially, so that private venture capital have an ever increasing income for the life of the ld/autistic, and remember, the worse their behaviour gets the more money, the care provider can claim, as can pharma for the needed medication
All is aimed at removal, and parents, if they have managed to keep their child at home at 18, are targeted, and they have no rights, nor do their children, once their child is deemed incapable, and COP takes over.
https://finolamoss.wordpress.com/2015/04/27/independent-living-disabled-penned-for-profit/
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Finola everyone with a learning difficulty is entitled to some support such as day care or respite. I’ve never heard of anyone living at home with their parents who doesn’t receive any support at all.
Admittedly the expectation that parents will provide care for free on their miserly Carers Allowance is abhorrent.
Most adults here in the Bristol (old Avon) area receive Direct Payments and employ PA’s.
Even children and teenagers with LD/ASD and challenging behaviours are expected to be supported by PA’s sometimes on 2:1.
Agency is seen as the last resort and often employed directly by families through DP.
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Believe me what I say is true, and can say no more, as I am gagged, email me on finolamoss@gmail
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I Think you will find this is only in childrens services, once you hit adult services at 18, it happens as I said. Reason being the only future support is away from home in supported living. No after school respite or clubs after 16, no respite provision. Also risk they may never come back from respite as safeguarding/ abuse issues at home found,
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sorry got email wrong finolamoss@gmail.com
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But you are missing the main point of what I say, parents receive very little support and cannot sue for it, and the care providers, as can be seen, are making millions profit, and, that is why, all are being forced away from their parents at 18, and often parents are excluded, and cannot, in any event, raise concerns about care, no one can, except the reviewing social worker/adult care manager, who would lose her job probably, as the care is commissioned by the health and social care, so they would be liable if inadequate, so huge conflict of interests.
Hence what happened to Thomas. Paula had already complained to CQC and got no where, and got nowhere a week before he died she was gagged.
Courts of protection, are putting all LD/AUTISTIC in private provision for life in their ‘best interests’ under the MCA, but do not check, what happens to them when they are put there, and there is no court oversight of whether in fact, it is in their best interests or any oversight from courts.
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You may be right that A&T units are profitable at upwards of £3500 per week but LA’s would expect to pay much less for a community based home.
I ran a Dom Care Agency and we certainly weren’t raking in money. We looked at Positive Response Training and TeamTeach and a few others and the cost was phenomenal. Social Services had no intention of paying us any more to cover the cost of it. Plus this training is useless out in the community.
So lack of funding, gungho risk assessments, high staff turnover are all huge disincentives for local providers to take on adults leaving A&T Units.
Hence people languishing for years in these places.
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Certain chosen venture capital backed monopolies like lifeways/cambian are chosen, money does not seem to be a problem, see amounts paid to St Andrews Health care NORTHAMPTON in my blog posts,
It appears, no one is campaigning for those LD/autistic held interminably in private ATUs, or in the specialist hospitals owned by lifeways etc……………………………;
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Some of the people featured this week are in private provision
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I have been following and signing/ sharing all the petitions for people held in ATUs up and down the country. Having supported children with autism, I am both disgusted and appalled that people with autism are being treated this way.
On 28th April Parliament is hosting a 3 hour debate on autism. Don’t miss this important opportunity to make your voice heard at ‘The Too Much Information’ debate by telling your story to your MP (if you have not done so already) and persuade them to push for mor Government support for autism.
https://act.autism.org.uk/ea-action/action?ea.client.id=10&ea.campaign.id=49942
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Reblogged this on oncetherewasascaredbunny and commented:
The system is broken and these younger children age suffering! I’m appalled
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[…] * Eden * Jack * Thomas * Tianze * Stephen * Robert * P * […]
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[…] Day 2: Jack Smith […]
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[…] the last month or so, one of the young people featured in last April’s Seven Days of Action, Jack (day 2), has been released home, this time more by accident than by design. Jack was in the same hospital […]
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