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Fatal Placements

January 30, 2018

Last weekend I blogged about some of the lessons that families need to learn that have arisen from the evidence at Richard Handley’s inquest. One of those lessons was about trying to recognise the sham of rebranding a care home into supported living and the dangers that can follow that move.

The last two days of the inquest have seen staff from Bonds Meadow give evidence. Some of them have only worked there since the place was reclassified whilst others knew both regimes. I’ve been horrified but fascinated about the little details that reveal the bigger picture and the language used that gives the whole game away.

I have to admit that my idea of good supported living is very sketchy. Most of the examples I’ve come across are purpose built (or converted) complexes with several flats being housed in a single structure. The sizes vary dramatically. The one by me has 24 flats. I’ve heard of others with just six. I guess my image of those flats is of a self contained home: a living room, a bedroom, a kitchen and a bathroom. Sometimes they are studio flats with a living room and bedroom combined. The bigger ones often have a large communal indoor space for social gatherings and often tend to have an office on the premises for staff to gather. But the life someone would lead inside their own front door would pretty much self determined, independent and with the support they uniquely need.

Bonds Meadow sounds nothing like that. Here’s a few statements from the inquest that reveal that perhaps it’s still a care home in all but name:

“Richard spent a lot more time in bed. He didn’t really come down for tea”.

Coming down for tea suggests there was still a communal dining room and kitchen. If he had his own flat with his own kitchen wouldn’t it have been, “He didn’t really get up for tea”.

“There was a budget for food and cleaning supplies”.

Why? Richard had his own income. He could have brought his own food and washing up liquid out of his own money. Does this mean that all the residents’ money was pooled and supplies bought en-masse? How would the Office of the Public Guardian feel about that considering I had to differentiate between my toilet rolls and Steven’s toilet rolls at last year’s audit?

“He would be encouraged to join in but he did spend a lot of his time in his bedroom”.

Join in? With what? With who? Again this suggests lumping all the residents together in one space. Surely having your own flat means you can chose times when you socialise and invite people in or go out and times when you can be by yourself. Joining in immediately makes me think that there were never enough staff on duty so to cover that up and make it easier to manage, the residents were herded into a communal space.

On the subject of shopping: “We’d always encourage the service users to come with us so there was some participation”.

By referring collectively to the “service users” the implication is that again, the residents are grouped up together. A trip for three to Tesco? I dunno but that makes it sound harder to achieve a truly person centred shop. For many people, shopping is a chore. A necessary evil. I do both mine and Steven’s weekly shop online because Sainsburys is likely to trigger a meltdown for both of us. And what’s with the “participation”? Its service speak. It’s someone on the outside being allowed to come inside.

“Originally supper was for people who needed something with tablets before bed but they all jumped on the bandwagon”.

“They”. Typical othering. The dehumanising of the learning disabled person. And jumping on the bandwagon! They were talking about supper snacks! There’s a contempt in that statement that makes me heave. The follow up piece of evidence mentioned that Richard kept his snacks on a “shelf in the kitchen”. Once again, I suspect this was communal – “the” kitchen, not “his kitchen.

Somebody on Twitter tweeted “This is so different from how Steven lives his life in his home”. That thought kept me awake for hours last night. It never occurs to me that Steven’s home is supported living. Nobody I know has ever used that term in reference to his house. One social care professional once described it as his “placement” but I made her eat 6 hard boiled eggs whilst singing Green Door and she’s never used that phrase since. Steven’s life and the life of the Bonds Meadows guys are poles apart.

How does this deregistering a care home business work? Does the manager of the home ring up the CQC one day and announces they built several front doors and everyone is now wonderfully independent? Do the CQC check that the new regime is what the provider is claiming? Deregistering seems very popular at the moment. I’ve read of several ATUs that are going down the same road.

Everything changes. Nothing changes.

But from the information from the inquest (and my gut tells me this is commonplace rather than a rarity) deregistering can make a place become dangerous overnight. Standards and checks that would have been in place become history overnight. And the residents are left with a regime that they are unable to manage.

Where is the Mental Capacity Act? At the time of Richard’s death, the Deprivation of Liberty Safeguards didn’t apply to supported living. But they do now. Is anyone checking that the residents’ legal rights are being upheld? We know the answer to that question. Who gives a toss!

The more I learn about Richard’s and the other residents’ experience of supported living, the more terrified I become. To imagine that as Steven’s future breaks my heart.

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16 Comments
  1. LizzieD permalink

    I don;t know much about “supported housing” either. It can sound very cosy and civilised in brochures and news releases. And it could be, if it could be organised carefully, and the residents each had whatever support is appropriate.

    But I doubt it works that way often. The only person I know well who lives in one is a lovely young woman with autism who spends most of her time wandering the streets unsupervised and over-eating so that her weight gain is horrendous. She DOES value her “independance”, but independence is not incompatible with decent care.

    What a difference it would make to people and to us as pareents if there was the slightest chance of decent care that wasnt tied to budgets.

  2. kate permalink

    How does this deregistering a care home business work? Does the manager of the home ring up the CQC one day and announces they built several front doors and everyone is now wonderfully independent?……………………….

    This is my understanding. Local Authorities used to run care homes for people with learning disabilities. There were no meaningful choices about how you lived in them. They were created in 1993 when care (that wasn’t nursing care) for people with learning disabilities was taken over by Local Authorities from the NHS. Residents had no income other than a personal allowance of something like £10 per week to spend on things like going for a cup of tea at a day centre. They could claim the care component of what is now DLA but only for the nights they went back to live at home with family. They could claim the mobility component of DLA if they met the criteria but the home would expect most of it to be handed over towards a minibus or some such. Some families kept some mobility money back as, to cut a long story short, if you wanted your loved one to get out at all, you had to go and fetch them and support them. But in 2003, Central Government came up with a “Supporting People” initiative. This was meant for vulnerable people and was not necessarily aimed at people with permanent learning disabilities already in 24hr care at all. I am pretty sure Local Authorities were fairly open about the fact that they wanted in. Central Government money was given to Local Authorities but it was ringfenced and was only to be used to provide “housing related support” to people living in their own homes who might gain some independence. If Local Authorities could not make use of the fund, they could NOT have the money. My recollection was that Local Authorities clamoured for the funds and pushed the idea even for care homes for people with learning disabilities. Care homes had to be “registered” as such but, to make their residents eligible so the Local Authority could benefit from the initiative and money that came with it, they had to de-register the care homes. It meant that instead of their residents just having permission to stay in their bedroom and use the communal facilities in the care home, the support provider had to give them an assured tenancy of their bedroom in a shared house. This meant the resident was now a tenant of their own home (tada!!!)(although their own home was probably just a tiny single bedroom in a shared house) and could then claim housing benefit! Some huge rents were “agreed” between support providers and Local Authorities. Housing benefit rules prevented housing benefit payment restrictions in these circumstances and so the support providers were now collecting large rent payments. As a tenant, the resident was now allowed to claim benefits and DLA care etc. Local Authorities could then either assess the resident to contribute financially towards their support and/or make them pay for services like attendance at day centres etc. Residents/tenants were now expected to pay into a budget for food at the house/home/shared house and pay their share of electricity and gas bills etc. But essentially ABSOLUTELY NOTHING changed. Same room, same rules, same meal plans, all eat the same, same staff, same old shit. Tenants did not get a key to the door and their family would not dare just walk in and out or use the kitchen or anything! Rent included money for allsorts, like replacing furniture in shared areas as necessary, but things would get tatty. The resident/client now had a landlord who rented the room to them and a separate support provider. However the landlord and provider usually remained one and the same. I think to be eligible for the “Supporting People” scheme, the client had to have the right to change support provider if they wished. However, many (most I assume) clients did not get their needs separately assessed and, whether they had been assessed or not, they continued with shared care as had been the case in the care home, i.e. a smaller number of staff to clients and so they had absolutely no choice individually about changing support provider (I understand this issue alone created some grey areas for housing benefit claims) unless the Local Authority were going to chop staff up into halves ad thirds!!!! And even if they were willing to chop staff up, apart from them being dead, the situation would break down at night as there would likely only be one sleep-in room (sorry large cupboard). Once the home was deregistered, this then created a situation where whatever regulatory power at the time (now CQC) could no longer visit. CQC simply audited the support provider (at head office usually) and allowed self assessment by support providers. Interestingly, I wonder if the properties that were chopped up on this way are still Council owned or have “transferred” to the support providers. I could of course be totally wrong about all of the above BUT I lived through such a transition and after knocking on many many doors and asking many many questions, that is a good a summary as I could fathom about how supported living came into being. And when it did happen, managers had NO IDEA about landlord responsibilities and no idea how to charge for things like utilities and carried on like they ran a home, sending clients backdated ANNUAL gas and electric bills!! Imagine being on basic benefits and getting an annual gas bill and not being able to get even the vaguest estimate in the meantime. And it took years for managers to work out transport costs and then send backdated bills. Andy nobody grasped whose home the building actually was! Staff NEVER dreamt they should knock to come in.

    So that is how people appeared to live in care homes but were actually in supported living. Smoke and mirrors (but you had to buy your own mirrors)……

    • swanarchie07 permalink

      Thank you for this, my mum had a stroke in 2005 and went into a young person home for people with disabilities until then I had no idea of the world of disability, this clears up a few things of how here care home or supported living ran things , since her death in 2007 I have been on my own journey with my child who has complex learning difficulties and health needs and fought for changes and been successful but now he is 11 the world scares me , I follow many blogs and from others who have travelled the path before me I am grateful for the changes they have done and continue to do, it makes e look at how I never want my son to be in a home he will live at home and as independent as he can be with good support workers with his direct payments or personal budget , or what ever they bring about and change xx

      • kate permalink

        sorry about your mum. yes, your son MUST live the life he wants and home must be what we MEAN by home in everyday speak, the place you can live safely and happily and independently. we have to really fight to make sure of it.

  3. Sarah permalink

    I am very concerned about the idea of de-registering care homes. My experience of purpose built supported living for my LD brother (he’s been there five years now) has been really positive but I know that it is very much down to the manager. When she was on maternity leave the difference was very noticeable. It isn’t always perfect but I am positively encouraged to raise any questions/concerns I have and problems are always dealt with as they arise. My brother is happier in supported living than he was in a small residential home or in various group homes before that. He loves to come and visit us every other weekend but is very glad to go back to his flat. Tenants are free to choose to eat in their flats or in the communal area and are treated as individuals. He loves the staff and they seem to love him. I do realise how lucky we are and hope it continues for his lifetime.

    • kate permalink

      What is truly meant by “supported living” is so much better than what care homes had to offer. But often new initiatives are, as Mark said, a sham to do with MONEY and not about improving lives at all. We are absolutely right to fight for our relatives and others with learning disabilities to live in their own home (not a sham where your care home bed suddenly transforms into a make believe something else) with the facilities we need and only ever living with who we want and with the support we need in place and the right to change our minds and want different things later and with regulatory bodies ensuring safeguards. Sarah is right that support is often only as good as the manager you come across. Great news about the one supporting your brother. Support providers are not robust companies that provide consistent and competent support that reassures parents they can die and everything will still hold together for their loved one. And Local Authorities certainly are not the glue that holds services together. But shams and cons that just make cash cows of our loved ones are wrong wrong wrong!

  4. weary mother permalink

    I watched the Silent Witness programme last night. Some may say it was ‘over dramatised.’

    ”Was it based on research”. (I read this on a tweet today)

    Strewth !

    Winterbourne and so many many more. And all the other silent abuses that just went away quietly.

    For no one was looking or listening ?

    Long Care and so many, many more.

    All are recent. And not history.

    My son was bullied for years. My son’s injuries and his misery and all my pleas to all and everyone – for years – met arrogant deaf ears; we were silenced – bullied away for years.

    My son was left emotionally and physically damaged…for ever.

    There is a mountain of evidence of the devaluing of the worth of our sons and daughters. .

    ‘Caring’ people would deny that fiddling assessments, in order to protect budgets and demonstrate lesser needs, is neglect – far less abuse..

    Public organisations blind and deaf to the fact, that their not monitoring the services they buy for vulnerable people..permits the abuses that can happen everywhere – silently.

    With well paid ears and eyes shut. Misery – is – and tears are – silent.

    Loads of evidence – if people would only look and listen.

    • kate permalink

      i didn’t watch…but will certainly watch now. your words are powerful and tell it just how it is…

  5. Vicki Crabb
    · 19 October 2017
    My daughter was supported by you for approx. 5 years during that time she was emotionally abused and threatened sometimes traumatised by what was happening in the house When bringing this to your attention you refused to acknowledge and blamed her, particularly me her mother, her family and her PA’s.
    I continued to complain on her behalf to all concerned but still you took no action regardng the hate crime and bullying directed at her and myself.
    Some of the hate crime and emotional abuse came from a young lady who was eventually moved she manipulated and was cruel to some of the service users.
    She also treated a young man like a slave her behaviour was never dealt with or even investigated he was in fact a whipping boy.
    When I spoke with your managers about this they said you were dealing with it but still it continued. At times you insisted there was no problem with her behaviour.
    There was a high turnover in staff and Managers 4 in 5 years and a period of time with a stand in Manager which must have been telling you something?
    My daughter was reputedly abused f….k you and then her name would be called and then Kill Kill her name added wanker and end less other taunts and disgusting language he also called some staff n…..rs.
    This taunting shouting and aggressive behaviour would take place all hours of the day and during the night often agency staff would arrive for a night shift and if he didn’t like them he would start being abusive.
    Often staff were not epilepsy trained and they were unable to support my daughter and so I would have no choice but to bring her home.
    The then manager would claim the Agency caveat claimed all staff were epilepsy trained!!!
    This young man would be violent throw chairs turn over turn tables and attack staff she was absolutely terrified he was of course very strong when he was in a high state of anger staff would often have to run from the house.
    Some times she could not even enter her house because of his anger, rage and threats.
    Your managers told me it was his house and he could shout as much as he wanted!!!
    He was a very distressed and unhappy young man who needed help to have some structure in his life. Some days he complained he was worried or bored or lonely staff would often leave him to support others in another part of the building.
    My family and friends were witness to this treatment and behaviour to my daughter.
    Some carers would sit with him for 2 hours at a time often they would not engage with him some could not understand him nearly always some one different from an agency rarely never witnessed any hand over.
    Often he would be left for hours shouting and swearing abuse my daughter had to sometimes eat her meals during this abuse or take her meal to her bedroom and no member of staff cared she would be afraid to leave her room when he was raging and wait for hours to come out. Staff advised this as best for her safety.
    However this was her home too.
    Police were frequently called to the house due to problems with another service user who always managed to cause trouble for those less able to say how it was, often not their fault but they were less easy to understand or defend themselves.
    A young lady with epilepsy died in her room after having a tonic clonic fit I really feel her care was appalling. She lived in a flat and came down one morning as usual she looked awful her wyes were black she had fallen during a fit in the night and no one knew.
    Her Mum took her to the hospital a few days later as her finger was hurting the Dr wanted to know how she got black eyes and was shocked. Also a prescription for Bucal Midazolam had been waiting to be collected from her GP.
    Not one of the residents were given counselling after her death although it was loosely talked of.
    Staff gave very little support to her Mum and her money was finally returned almost a year later.
    It was a tragedy I felt very sad for her and her family I did not feel she was treated fairly. It was a hell hole I frequently bought my daughter home eventually she was becoming traumatised and people/staff were accepting it as normal.
    The more I complained as is often typical the more your Managers turned the blame on me they said some terrible things about me which I believe happens if you are a whistle-blower.
    Yes I had endless meetings with managers and your CEO did come to the property to “look” this was because I had complained to him about the house having no washing machine for over three months.
    He was not introduced to my daughter and he was not introduced to any of the carers on duty that day.
    As you can imagine I was not too impressed by him for not engaging with the people he alleges to care so much about.
    My daughter had no idea who he was on that day!!! He did however write to me offering to meet but I felt after his visit to her home it wasn’t worth my time. He had paid little attention to the many other issues on the day of his visit I felt he was most insincere. I hear much of his rhetoric and would have expected him to engage with the people and residents far more.
    He promised to oversee problems some quite serious issues with the Housing Association but he never did they just rolled on.
    Fortunately you lost the contract to run this service I believe this was due to your poor performance. Parents were enabled to have some say in the selection of the new provider there was little confidence in your service usually the incumbent provider would have continued with the contract.
    For me and my daughter and my family you failed to deliver any of the things you promise more important you did not listen and you looked to blame me and.
    my daughter.
    You reused to notify the police re the behaviour quoting a family request not to it was your job to address this hatred and violence and to ensure this young man was safe and happy.
    Frequent visits from my daughters epilepsy nurse who also witnessed some of the terrible things that went on and reported them to safeguarding.
    Your managers bullied me and in turn some staff behaved in the same manner I believe this is learned behaviour.
    My daughter came home during the last few weeks of your contract in Oxford she was exhausted and could not take it any more. She thought she had done something to deserve his behaviour.
    There was no nurturing from staff in charge no leadership and training was minimal Agency staff were used a great deal especially at week ends. Good staff left and were disillusioned with management.
    Your offer to re-open discussions is unacceptable you failed to listen and act so many times before what will have change?
    My daughter is so happy now she truly has a personalised caring support plan which really does work.
    She should never have been treated in this way and you should not have allowed it. It was easier to walk away and ignore it.
    A service provider is only as good as it’s care staff and there are some truly beautiful people out there. We remember many of them with great fondness they did an excellent job but were not well treated.
    Glad to have aired this I do not wish to enter into any cosy chats behind closed
    doors.
    It’s good you are prepared to be transparent I can see from this I am not the only person who had issues with your support.
    I hope you will learn something from this. Of course you can’t get it right all of the time but my experience as I’m sure you will agree this was a truly disgraceful way to treat people regardless of their background or needs?

    This is a copy some with some minor corrections of a post I shared on Dimensions web site.
    It is a sad reflection of how appalling supported living can be and how the providers can cover their poor practice.

    I was threatened that if I did not stop complaining they would withdraw my daughters support this came from a senior Dimensions Manager and was in the presence of her Care Manager.

    The real problem I believe was that my daughter took her own PA’s with her when she moved into supported living of course they were witnessing the day to day failings of some carers and the shocking treatment that took place.

    It had been my intention to stop helping to manage her care by DP and hand the whole package over to Dimensions ideally they would have preferred this.

    However my confidence in their ability to support her as she had been was not a choice.

    Living in this environment took its toll on my daughter her PA’s and my family we kept Diaries many staff left especially the good ones others and some stayed because they cared.

    This supported living placement was in Windmill Road in Headington the new provider The Camden Society promised my daughter (as some sort of recompense) no one would move in to take her place until the resident with distressing behaviour was rehoused!
    I truly believe this was said to make her feel better when she had had to leave the house and come home because she was so traumatised.

    I know if Dimensions read this they will say as they have preciously we can’t always get it right but having 5 years to listen and make no changes is disgusting.

    They did not provide person centered support! They did not listen! They certainly weren’t there for the people they support! In my very humble opinion.

    • kate permalink

      Dimensions threaten families who speak up and raise concerns with withdrawal of service. That is their latest tactic. They vilify any family they can not stop raising reasonable issues, however carefully and thoughfully family approach them.

      • Hi Kate reassuring but sad to know I am not the only Mum to have been so badly treated by them and that my daughter was so traumatised by their appalling and bullying behaviour.

  6. weary mother permalink

    How many vulnerable, people who have lived in supported living etc, have returned home because of their of families fear of, or experience of, their neglect and or worse by service providers ?

    How many vulnerable people, who require a great deal of care and support, are returning to the safety offered by elderly parents, or, if parents dead to their siblings who may have very demanding lives of their own ?

    How many people return home because they have been neglected, harmed or are in danger of
    both ?.

    How many providers ignore or ridicule families’ fears ?

    How many LA’s ignore or deflect family concerns, because of incompetence or indifference, say, or for cost saving even, because families provide free support ?.

    How many families have learned that no one is listening, and over time to learn that complaining to LA (or any where else) is a waste of time and energy ?

    How many have learned that nothing improves, and therefore precious people will continue to be neglected and harmed ?.

    How many have learned that the only learning in this cycle of fear of harm,and harm and yet more fear – is that the family learns to not complain and to take their son, daughter or sibling home ?

    And where there is no family sanctuary….?

    Who knows ? Who cares ?

    • Has this happened to you too? It is truly disturbing these guys have no voice only ours no one is listening. The Supported Living Providers like Mencap Dimensions etc. all have the biggest say in what goes in in the lives of our kids. Worse still they puff themselves up and talk up their services like they are the experts give out advice based o their expertise and one could easily believe this is what they do in practice.
      25 hours per week of my daughters support was regularly used to support others and when I challenged this I was told why should they (the carers) not be in the house when she was sleeping! they could/should have been doing the washing ironing cooking preparing a lunch shopping list etc..
      I was a perpetual pain in the backside because I was unable to accept their unbelievable ethics. I was the mother from Hell I was forced to ask every one in the house if I could come in to visit my daughter I was the only person and my daughters carers who had to sign in when arriving at the house. My punishment for complaining to safeguarding about the way they were supporting people.

  7. Helen permalink

    It will be still a care home but with fewer staff. Less oversight. The best care homes give oversight and good managers on site who provide continuity between shifts, make sure assessments are done properly so that people who need 1:1 or higher support get it, so that appointments are corordinated and key workers are supporting people to keep in touch and involved with family.
    My son lived in a residential care home – he got physio everyday for his chest,staff were taught bowel massage and supervised to make sure it was done properly. The physio inputting into the needs assessment for bowel massage, rebound therapy, yes therapy he had a spinal rod there are dos and don’t and training to be given to make sure it was done safely. Just for anyone sneering at the apparent medical word therapy. Rebound helped his bowels. He had hydrotherapy in his care plan for for his bowels. Before his gastostromy and later a jeg, he had his diet monitored – he was given choices – but healthy choices. Why – sorry guys he was assessed. He had bowel charts that his 1:1 supporter checked and phoned me if he hadn’t been for a couple of days – we discusssed poo. How much, what was the consistency, colour, smell. Like proper families talking about these serious issues sometimes there was laughter.
    I read an astonishing blog regarding this issue where some big wig in an organisation was talking about dignity – the care home whatever it’s label, should be the second family, it’s the persons home. We talk poo in our family, in our home. Do you?
    My conclusion after 27 years as a Mum and more years as an educator – frankly it doesn’t matter what the home and care model is as long as it is done well. That means well for each individual and their family. It should work for all. I am so proud of my sons residential care home. When palliative Care was needed the manager sort community outreach from the palliative care team at the local hospice – he had lots of medical/nursing procedures throughout everyday of his adult life. His care staff – not nursing staff did these tasks. Most of all he had fun and a rich life and well managed bowels. My campaign is – good care for all, in the right place for each person. The discussion around everyone being entitled to independent living is ethereal when it is institutionalised into a model. The model and words are the institution. Good care and therefore independent living is a state of being. Where it happens will be different for different people. We take or eye off the ball – we argue about institionalised word. We should be ensuring everyone has good care regardless of place. Place is about budgets not care. One of my sons last conscious acts was a nice big poo and a smile 2 days before he slipped away. Here’s to good care. Love my boy. Hx

  8. simone aspis permalink

    Thanks for sharing your stories – I am not going to say “good” as that sounds inappropriate. However through your stories it makes me wonder who you can trust and who one might suggest to look into when person with LDs/ASC and social worker is unsure what is out there. And for the advocate God help me as I end up having to look for providers for accommodation / support. I am having to understand what this new housing provider does, in terms of nogagating a tenancy with a private landlord via an estate agent – that seems very different from supporting someone to get onto the council and housing association’s housing lists and then looking for PA agencies or direct payments option. Cracky it really does not look to great out there – I have asked the SW to send me over what these providers do – Jane Knight can you tell us more?

  9. Suzanne Frankl permalink

    Harrowing reading above, even more upsetting was the “Silent Witness” episodes on BBC few nights ago which left me speechless and wondering if I ever be able to let my daughter leave home…
    That low life man in the film who was sexually abusing the attractive LD young woman was so upsetting to watch, that I can hardly think about anything else since..My daughter equally attractive
    having a serious learning difficulty would certainly die if it happened to her.
    Richard Hundley’s inquest has revealed neglect by people who should have cared for him and provided him with a good quality of life. He and his family was let down by system to be eradicated in 21st century Britain. Appalling reading Vicki Crabb, what your daughter and you had to experience.

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