The One Bedroom Institutions

The focus of the 7 Days of action campaign has been on the terrible lives lived by people in ATUs and a call for people to be enabled to live “proper” lives in a home of their choosing in their local communities. This will still be the focus of any ongoing campaign work but it is also important to look at what can happen when someone is discharged from an ATU and whether they are allowed to live the sort of life that they want.

Jack was our Day Two dude from the original 7 Days of Action campaign back in April. This is an update on Jack’s life since he was discharged on 10th June.

Prior to Jack leaving the hospital, the professionals instigated a 4 week “transition plan”. This consisted of visits from the staff who would be supporting Jack to the ward. There was also a single visit from a Behavioural expert. None of the transition involved the new staff working with Jack in his new home. Jack spent a weekend at his family home and moved into his new flat on 12th June. It should be pointed out that neither Jack nor his family wanted to move into the flat. The wish for both of them was for Jack to move back to his family home but the professionals wouldn’t sanction this move.

The flat is a living room/kitchenette, a bedroom and a bathroom. There are three other flats in the “complex”, each housing a learning disabled person. On arrival to the flat on 12th June, Jack and his family found a workman fitting alarms to all the interior doors of Jack’s flat. This immediately reminded Jack of the hospital. The social worker admitted that this was an error and would have them removed.

Jack’s phone calls home are monitored by staff in the home. He has been encouraged to phone home less frequently in order to build a stronger relationship with the staff there supporting him. Jack’s mother reports that Jack regularly phones home every day around 6pm and the calls continue throughout the night until the morning, with Jack in a growing state of anxiety. It seems, although none of the professionals will acknowledge this, that a night shift begins at 6pm and lasts until 7am the following day. The residents are left to their own devices in their flats, with a staff member available in a central office.

Being a new build there have also been teething problems with the premises. The fire alarm repeatedly goes off during the night and this causes Jack great anxiety. Not only because of the long, piercing noise that affects Jack’s sensory issues but he also has the fear that he could be trapped in a real fire. The fire alarm has been a regular feature over the first five weeks. Also, it was discovered that the electric in Jack’s kitchen is turned off for 12 hours overnight, meaning that all his food in his freezer is ruined. This is clearly a health and safety issue.

This week, Jack asked whether he could go out one evening. He was feeling anxious in the flat again on his own. Presumably because there wasn’t enough staff on duty to facilitate this, his request was declined. As the evening wore on and Jack’s anxiety increased, he unfortunately hit a female member of staff. The staff on duty called the police and Jack was shut in his room for seven hours until the police arrived. After receiving several distressed phone calls from Jack, his mother went to the flat to sit with him awaiting the police arrival. His mother was asked whether she wanted to wear an alarm as she sat with Jack. It was unclear whether the police will be pursuing action or whether the staff member will press charges but Jack was terrified as he it was explained to him about having to spend time in the police cells and possibly prison.

The following day, Jack’s mother took him out for the morning for a haircut, to buy some new trainers and have some lunch.

Jack returned to his flat and later that evening, the phone calls to home started up again. Jack reported feeling very anxious again and there were no staff around to reassure him.

Jack’s experience is in stark contrast to Robert’s story (our day six dude who is also now in his own home). Jack is 19. Apart from his time in the ATU, he has never lived away from his family before but is being forced to build a new life for himself, ostensibly on his own.

Is this what we want for a post ATU life? Is it simply replacing one institution with a smaller one?

 

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8 thoughts on “The One Bedroom Institutions

  1. Is this independence for Jack ?

    No.

    Is this in breach of his and his parents Human Rights ?

    Yes. s8 right to family life and privacy.

    Is it in breach of Equality Act ?

    Yes, as he is being treated differently from a ‘normal’ person because of his disability.

    Is it in breach of the MCA ?

    Yes. s4 states, even if a person has been declared incapable legally under the Act, and that in any event, is highly unlikely here, their wishes still have to be taken into consideration.

    Act must be interpreted so as to give effect to his and parents human right to a family life it has not been.

    And, it is clearly not in Jack’s ‘best interests’ as required by act.

    Why are the authorities LA, experts courts doing this then ?

    Because they can, and because the provider is being paid a lot of money for the provision and budgets do not allow support at home.

    Is there anything Jack can do /

    No. Courts are in a cabal with LA etc, and do what LA want, and this is what government and funding have instructed them to do, this is the future for all deemed mentally disabled, in the laudable guise of Jack’s independence and his right to it.

    Liked by 1 person

      • Don’t hold your breath. We need FOIA Notices of all those who are LD in supported living from 18-25 and compare to all those registered LD, and the findings in view of LA/HSCTs will be most are living in SL, as funding policy allows for little else. Court or no court.

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  2. It sounds to me as if Jack’s support package hasn’t been carefully designed to meet his needs. Independent supported living CAN work if it is designed properly, transitions are carefully planned and implemented, and a high quality provider is working in true partnership with individuals, families and professionals in the best interests of the person. I hope that when Jack’s support is reviewed, his advocate and family can work with the authority and MDT to improve Jack’s support.

    Liked by 1 person

    • And why has it not been designed properly ? Because there is no accountability in the system.

      And even if had been, neither Jack nor his parents want him to live away from home and it is their money that is being used ie his benefits and rights under the Chronically Sick and Disabled Act 1970.

      The LA are not accountable for their commissioned provision, as no one can effectively sue them for inadequacy.

      How ? As very difficult to prove, no legal aid, and if you lost you would be ordered to pay LAs experts et al costs.

      Who would sue them his parents ? Unlikely to be appointed next friends, as would be OS appointed by state and sorted in the COP.

      Are providers liable ? To whom ? The LA who commissioned the service ? The LA will not sue, as they would then have proof that they commissioned an inadequate service.

      The ticked box CQC seen inspection oversight that supports government policy for such provision ?

      Look at Thomas Rawnsley, even when the service user dies, and there is evidence of abuse, in two care placements Norcott Lodge and Kingdom House, both now taken over by one provider- venture capital backed Cambian, there has been no one sued some 3 years after the first abuse for which a carer was convicted.

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  3. It’s a nightmare all to often when people just talk and talk. But don’t really think of the consequences.
    And don’t plan the care package and the overall setting to suit the young person it then turns to this kind of situations.

    Why can’t he Jack have a carer with him all night?

    I must ask Eve.
    It just does not make sense leaving Jack on his own all night.
    Night staff at near by office?
    That is just ridiculous.

    We know Jack is very capable.
    He is articulate and can go out Even on his own.

    But having been in an ATU for more then half a year was very traumatic for him
    And he should at this point not be left to his own devices.

    I asked Eve why can’t they change the package to bring Jack home. She says the team have their reasons. ie his aggressiveness.
    Well we all know our boys can be agressive and hit you if they are overloaded with sensory.

    But it can be managed with right support.
    And with the right care.
    He could be with his mum and have the cares there with him as he has at his flat.
    It’s something ad you know mark I am fighting to get for my dude Stephen one of the 7 days.

    All this people are trying to do is mum is not in control we are. And as such we decide what where Jack goes or does.

    This must stop for poor Eve and Jack.
    Eve took Jack out yesterday all day. He was brilliant God bless him. He clearly loves his mum and feels safe when she is there so someone needs to listen.

    Before to late. Before the powers that be do something drastic and resend Jack back to ATU. You never know this people are mean and evil.

    Liked by 1 person

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