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Mr Submissive

January 3, 2016

Oh boy, was I depressing myself yesterday. I’ve been trying to tidy up my Word folders and came across the Folder with all the correspondence, logs, reports etc. in from 2010. Two things strike me from this painful trip down memory lane. Firstly, it’s amazing that Steven survived with his spirit intact. There are pages of “Incident logs” that have single figure sentences that to anyone with an ounce of humanity demonstrate graphically the distress that Steven was experiencing. Of course, humanity was lacking amongst the compilers of the reports, so they ended up being used as evidence to support their plans for court. The second thing that leapt out at me was how eminently reasonable and respectful I was in my letters. But also, I was arse clenchingly submissive. I remember Amanda, our barrister, expressing her shock that when I had to sit face to face with any of the Hillingdon power players, I went from articulate confidence to a bumbling, passive wreck. It was a fair observation.

Here’s a letter I wrote around about September 2010. I don’t think it needs too much context as it becomes clear that I am responding to a letter they had just sent me. This was about the time when they had come clean and admitted they wouldn’t let Steven return home & were looking for an out of area placement for him. In their letter, they listed all the things they felt were wrong with my care of Steven:

Dear S

Re: Steven Neary

I am writing in response to your letter dated 10th September 2010 and to M’s letter from last week. Thank you for your time in co-ordinating the response. I am especially grateful for the feedback you give in paragraphs 10 to 12. It is useful to receive the professional’s judgement of the areas where you believe my caring capacity for Steven is lacking. I don’t think I’ve ever received this is in black and white before. I hope you acknowledge my forthcoming questions and comments as I intended; i.e. a learning experience for me.

Risk:

You state: We also believe that you do not recognise or accept the level of risk that Steven presents to himself and others – nor the possible need of a secure placement (via the courts) if further specialist support is not sought”.

Can you state what else I can do to demonstrate that I do recognise the risk? I was instrumental in writing the risk assessments with M. I believe that I try at all times to adhere to the instructions in the risk assessment. It has also been me who has changed or dropped aspects of Steven’s community programme when I consider there to be un-necessary risks. For example, after noting from PBST’s reports that bus and train rides were becoming difficult for Steven to manage, it was my suggestion that these be dropped from Steven’s programme.

When I am out with Steven in the community, I am constantly alert for potential triggers. Perhaps you could check with the support workers who are with me on these trips as I am sure they will confirm that is the case. I did request at the Deprivation of Liberty Order appeal meeting that members of PBST or D carry out observations of how the support staff supports Steven when he is out and this was intended to include me in the observations. To the best of my knowledge, this hasn’t been done, certainly not whilst I am present.

As you know I have also been meeting several of the stakeholders recently and sharing ways in which Steven and I relate, which in turn reduce his anxiety levels and minimise the risk of challenging behaviour. Perhaps you could check with the support staff, who are regularly asked by Steven to phone me, often when he is distressed or anxious. I’m sure they will confirm that a short conversation with me usually alleviates his anxiety.

So, could you clarify what further steps you would like me to take in this area of risk recognition?

Food:

You state: “We have concerns that you use food treats excessively as a means of gaining Steven’s compliance. It will be necessary for you to fully embrace behavioural guidance provided by the PBST when having your son at home”.

Could you give some further clarification as to what you mean by “fully embrace behavioural guidance”? I have acknowledged before there may have been some occasions prior to Steven’s time away where I have given in to Steven’s demands for foods but am now armed with more strategies in how to deal with issues around food.

Since Steven has been under the control of PBST, I have been asked to demonstrate several things around food. The two main issues have been having less food available and portion control. I was also advised by R to use food as an area to improve Steven’s negotiating skills. So, depending on the time Steven will be home for a particular visit, I only put an appropriate amount of food in the cupboard. (For the first few home visits I did take photos of the food cupboards and fridge on my mobile phone but I was never asked to produce them, so stopped taking them) Secondly, I believe that Steven has been responding pretty well to me exercising portion control. I can think of five occasions in over 120+ home visits where Steven has returned to the kitchen to try and “top-up” the original portion he has been given. Thirdly, I have been trying to follow R’s advice and encourage Steven to negotiate food and this, compared to a year ago, has been an excellent piece of work.

So, is there anything else I can do to demonstrate that I take the issue of food seriously?

 Under-reporting of Home Incidents:

 You state: “The Council has been concerned about the under-reporting of behavioural incidents in the family home – this relates to a differing perception of risk and what constitutes an incident. We would want to ensure that we reach a common understanding about risk and recording.”

Can I ask if you referring to pre-ATU, post ATU or both? In June 2008, I was instructed by D to keep a log of any incidents that occur in the community. There was no mention made of recording incidents within the home. I did this religiously. For the first few months, I hand delivered that month’s logs to the Civic Centre but never received any feedback, so stopped handing them in but continued to compile them at home. Following mine and Steven’s move in August 2009, I became aware that I was going to be under close scrutiny now that I was on my own, so through my own volition, decided to include home incidents to the log. This I continued to do until Steven’s removal from my care on 30th December 2009. I acknowledge that I didn’t record “near misses”; this was a concept I had never heard of until I was shown the first log of incidents by PBST. I suppose up until you told me otherwise, I had always considered “near misses” as evidence that the risk management strategies were successful. Near misses are something, of course, that I will include in any future records.

If the statement relates to Steven’s home visits since he’s been away, I would have thought that my reports of the visits have been quite detailed. Also, apart from the two Saturday overnight visits, there has always been at least one other support worker present, so our reports should tally. Would it re-assure the authority that I am not deliberately leaving out incidents, if there was always a member of PBST present (like Tuesday evenings)? Once again, I am committed to learning from this experience and would welcome any input about the way I report Steven’s homes visits.

Treat Visits:

You state: We would want to develop a carefully considered plan to return Steven to his home which would partly consist of stays with you that are not “treat visits” but “real life” where low level demands are placed upon Steven to test out his responses and the management strategies within the home environment”.

My apologies if this sounds pedantic but do you mean that the visit itself is a “treat” or something else? Up until the 8th July, all the home visits were termed “transition home visits” and since then I have just viewed them as a normal part of Steven’s week. I’m not sure where the “treat” comes in. I would say that Steven probably finds more things to occupy himself with on a home visit and he tries to cram in a lot on a home visit but it is still “real life” as he knew it up to December 2009.

Can you clarify what you mean by the phrase “low level demands”? Whilst on home visits, Steven clears up after himself; took charge of his own laundry (when on overnight stays) and prepares some of his own meals. If I have that definition correct, can you point out what else you would expect Steven to be doing on his home visits as that will prove useful for my understanding and subsequent planning of the visits.

Facebook

In M’s recent letter, he refers again to a “risk”; this time in connection with the Facebook Campaign Page. Could I ask for some clarification as to what the Authority see as the risk here? All the people in the photos and videos have given their consent to being shown online and the posts by the members of the group have been unanimously supportive.

In conclusion, I want to thank you for your feedback and I hope this letter demonstrates my commitment to working on the issues that you have identified.

Yours sincerely

Mark Neary

 

 

 

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From → Social Care

13 Comments
  1. Painful. But that`s the power imbalance for you. Having said that, I think you beat them at their own game every time with your ultra-reasonableness.

    I wouldn`t call that submissive, in the circumstances. You must have got right up their noses.

  2. weary mother permalink

    As read this Mark, a silent procession of well behaved faces walked through my memory. Mums and dads and brothers and sisters all, who have sat numb with grief in TV interviews. Some so deeply traumatised are emptied and silent, Others with calm and impossible fluency and dignity, retell decades long fights for justice. A far too gentle rendition of the killing of their joy and hope. Yet they ffight on with suppressed agony and monumental dignity. To do any less would label them ‘toxic’, and being the real problem.

    Parents like us are not permitted expression of human feelings, far less the reality of marrow deep hell grief pounded and probed by dislocation from justice. Dignified submission is insisted upon. Only then rewarded with permission to unveil; to be stripped naked in public deep and silent pain on show.

    Our sons and daughters are not permitted normal emotions like sadness, or heaven forfend rightful outrage; at being treated daily as less than human. Their flawed normality resumed/cured by ‘ dope them till they are happy’, happy pills. Or just slap ’em to the floor and sit on them till they remember to always be ‘good’. Our sons and daughters are permitted access the human world, if nice, and are paraded round a city full of stares, even on a rainy day by bored people paid not to work somewhere else.

    Mums and dads learn quickly; it might take years to achieve justice and more than your life time to improve the cruel, blind, dogmatic deaf ‘Care’ landcape.

    Don’t ever behave it as it really, really, is, or it will take f…….ing forever ?

    • So sorry to hear this, as I identify with many things you write myself.
      It’s even ridiculous that Syrian refugees or economic migrants are probably given better care, attention, consideration and treatment than disabled people in this country (I’m from an ethnic minority in Asia myself).
      I think our children are a small but very expensive cohort, with care made more expensive because our input as expert parents is ignored. The outcome of all that wasted money is misery for child and family, so often. This has to stop. Enough is enough. That money can be used well, and can bring about happier lives.
      Bored careworkers are a big problem, because they are not ‘bespoke’ carers as care plans often recommend, so if LAs don’t provide expert care, all lack of progress is their fault.
      LAs monitoring care more effectively should turn things around, and we must speak clearly.
      The few parents that employ careworkers themselves should be supported, and parents that don’t should be encouraged to interview careworkers alongside managers, as some good practice happens, but of course doesn’t quite make the news (!)

      • lisa permalink

        i identify too weary mother and have nothing but respect for every parent out there.
        Hindsight is a cruel bastard. I gave up on adult social care a few years ago. Sent direct payments back when eventually realised even people i employed myself were below par. I hate alI of it. I do it myself 24/7.

      • The money, is wasted on private profit, management, and outsourcing.

        Agencies, claim up to twice for themselves simply for providing the worker, ie they pay 8.50 an hour, and claim £25 from LA, most agencies claim at least the same amount as the worker provided.

        Care providers, charge on average £3500 per week, and far more, as they make out behaviour is as bad as possible, to claim more, but only deal with it, by encagement, risk assessment, and poorly paid itinerant care.

        This is systemic, to make as much money as possible out of the newly created cash cow, the vulnerable, see amount paid out for my daughter.https://finolamoss.wordpress.com/2014/10/23/the-love-of-money/

        We got no support or respite. they need show nothing for their money, except a body turned up, or the adult is safely encaged, and possible tick box activities are available.

        Their happiness, quality of life is not measured, and neither, they nor their family can complain, and if they did it would make no difference.

    • It is, a purely for profit landscape, and, is set, if it is possible, and, it appears it is, to get even worse.

      More medication, a more itinerant work force, paid even less, and, more learning disabled, behavioural problemed victims, taken from more families..

      Venture capital are moving in, they rip the heart out of a service for maximum profit, and then move on.

  3. Sally permalink

    I thought you argued your case extremely well, point by point and with great tact. That said, I understand how enraging it must be to read it over. Why the hell were you reduced to justifying, apologising reasoning in the face of high handed punitive demands?
    Why was the imbalance so great that you were in such a one down position? I imagine the other side were under no obligations to explain or back up any of their actions. You were being written to, not as a concerned parent who is being asked to consider things which might need to be in place but as a backslider , unsatisfactory employee or criminal !
    I have tried very hard over the years to be rational and helpful and have despised myself when the imbalance is so great I feel like a fawning terrified fool. I am afraid I have at times given way and written angry letters furiously pointing out inconsistencies and absurdities in what I have been told to do for my son. Criticising absurd language and meaningless directions. (” Enable him to embrace his autism ” and so on.) It always leads to repercussions. The stakes are very high.
    There is a lovely phrase in Kingsley Amis’ ‘Lucky Jim’. “-He was well schooled in giving apologies at just the moments when he should have been demanding them.” Perhaps that is what rankles the most.

  4. Wow – what an illustration of the prejudicial attitude towards you! There seems as if there’s no consideration of alternative reasons for Stephen’s changes in behaviour – like wouldn’t we all if incarcerated see going home as a ‘treat’, particularly if we had someone so trusted on our side? So sad that authorities don’t recognise the shortfalls in their position or engage in positive partnership…. feels like their reluctance shines through with the clear power imbalance. We’re sadly continuing to see this in the numbers of people still stuck in institutional ‘care’ despite the giant efforts of families and supporters – and do the agencies really think what they offer is adequate? It continues to be n attitude of ‘blame the person’ rather than understand that what they offer exacerbates any challenges being displayed. Even without the cognitive handicaps, most of us would be pretty challenging put in the same situation! Thank goodness for the relative impartiality of the Courts…though how awful to have to go through this. For me it’s the arrogance of so-called professionals who seem to think they have the monopoly of knowledge when we see daily the evidence of the shortfalls both in what they offer and their understanding of what works. Please please PLEASE could they start to look at & learn from what has happened in the lives of many people supported by families and really good agencies whose challenges have been turned round by people who really care who really listen and spend the time to help the person start to trust and risk opening themselves up to trying to have a life – the one they want/can discover? None of us should imagine we have the answer, but we should all strive together not in combat…. Mark – you leave me in awe of what you’ve done for Stephen… and what you still do.

    • Trudy permalink

      Rosemary

      Legal aided legal support is almost impossible to access. The access criteria has been squeezed wafer thin. And’ letters only’ legal aided support is usually all that can be obtained.. Judicial Review a faint dream.
      Even the most clued up have difficulty finding a Public Law practice, and even then it takes ages to complete all the documents and provide all the evidence necessary for legal aid. It all takes yet more energy and more chunks out of of a life already used up in filling care gaps and dealing with daily crises.

      Even most shocking neglects do not achieve access to a solicitor far less justice.

      (And hens teeth are much more easier to find than cost free independent advocacy, for LA’s have it all sewn up in their favour.

      .I contacted LGO recently hoping for useful advice. I was shocked to find that only complaints made within a year are considered by LGO. Considering the snails pace LA complaints processes take, I am amazed any complaints reach LGO within this time.

      LGO adviser’s advice: to find an independent advocate, ‘of course there will be an hourly fee”, I was told!

      ………my hours come free.

  5. This illustrates, that all agencies etc, act in minute unison, to remove, as many LD/autistic, as they can, for ever, away from home and parents, to the very lucrative cages of for private profit provision.

    Our children, are cash cows, and government policies, and, all the legions of the state, including all the recently set up Multi Agency Safeguarding Hubs, sole outcome is private encagement for life.

    Any incident, any behaviour, is grossly exaggerated, and, indeed encouraged, by lack of, inadequate/inapproriate/incompetent support, medication, to ensure incidents, and bad behaviour.

    More and more non-existent mental disorders, we have 375 possible ones, are piled onto autism presentations, which no one can adequately define in the first place, to make the risk greater.

    These serve the courts rubber stamp removal, and, justify the huge sums,£4000 per week private providers can claim for ‘care’.

    Stephanie Bincliffe , who died at 25 stone, in a padded cell, not even allowed out to the toilet, certainly was not getting any proper diet, exercise, in fact nothing for the £4, 000 charged for and allowed for her care.

    There appears no checks in state provision.

    The problem is, parents cannot stand up to the state. How can they ? per se, and, they have the Damocles Sword of removal torture, and possible death of their children, all rubber stamped by the court as, in their ‘best interests’ hanging over their heads, or, the state, already have your child at their mercy.

    • Shirley Buckley permalink

      Hi Finola once again, that’s it. Our sons and daughters are in their power,they can stop us having any sort of contact with them for ever, if we even raise our heads above the parapet – dont I know it.

  6. Sally permalink

    I find it astounding that the ATUs and other services cost so very ,very much and can offer so very, very little. At a minimum you would expect
    Well trained staff who actually seem to enjoy working with disabled people, get to know them and who have ideas.(I have noticed that the people who seem to be working at the activities often don’t seem all that keen on learning disabled people.)
    Competent managers and well qualified clinicians who have a clear idea of the reason why a person is staying with them, what they are doing and how treatment is going.
    A safe and pleasant setting with resources for disabled people who will need extra help,to communicate and be rested and occupied.
    What do we fine? Crummy run down premises, apathetic, undertrained staff. Yet the fees are such that you could put the disabled people up at the Ritz with a support team for less.Where is the money going?

  7. nic permalink

    who wouldn’t act submissive, going toe to toe is fine if your child/adult loved one is within the safety of your/their home. Most people would placate in any way indicated if their loved one was removed from them. Terrifying to think of the log that would need to exist for your LA’s satisfaction in respect of a friends ” real life ” average day. Near misses before 9:30am would fill any number of pages. Blissfully all continues to fall within normal family life without scrutiny.

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