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The Best Interests Inequality

September 13, 2015

Since Friday, I’ve been stressing like mad over a decision I need to make. I’ll write more about what the decision is all about in a later post, but suffice to say, that it is basically about whether something is in Steven’s best interests.

I make best interest decisions all the time, probably more than I realise, so why is this one so difficult? Lurking beneath every decision I make on Steven’s behalf is a fear of how that decision will be interpreted by the official bodies. Families who come into contact with social care have every iota of their lives judged by professionals and I haven’t met anyone who doesn’t find this deeply threatening.

Yesterday, Sara Ryan posted some details about the Southern Health records that form part of the court bundle for the inquest. Part of them include pages of “family observations”. During the observations (which must happen whilst the family are visiting their loved one in the Unit), staff assess the family on issues like: “scapegoating” and “emotional tone”. I don’t even know what that last phrase means but I googled it and it seems to have its roots in scientology! Whatever it means, it is awful to have normal family interaction judged by a complete stranger for its emotional tone.

Back in 2010, as part of the fake transition home plan, Steven came home for three hours on a Tuesday evening. He was accompanied by one of his usual support workers and a member of staff from the Unit. Steven chose to follow the same routine that he would have been doing had he been at home on a Tuesday – namely, a music dvd session. This involves lots of singing and dancing. Three of us would be bopping away whilst the staff member from the Unit was making observational notes in a little black book. There were times when I wanted to scream at him – “What the fuck do you think you are doing! Coming into my home and judging whether our loving family interaction is appropriate”. But I never did. I just gritted my teeth and carried on with one of the most awkward weekly three hours of my life.

Anyway, back to best interests. I am perfectly content to let a court make a best interests decision but I am desperately uneasy about the State making one. But as I wrote about in the last blog post, albeit on a different topic, the family is to be distrusted and treated with suspicion, whilst the State is faultless and a model of integrity. Every best interest decision I make for Steven goes under the microscope but the State can make far reaching best interest decisions without any scrutiny whatsoever.

I don’t think the State should be trusted with best interest decisions. Their agenda is so loaded. Day after day, we read stories of people losing their ILF payments and having their care packages slashed. There is never any mention of best interests in these decisions, although you often have it framed vaguely as “choice”. People are still being taken away from their family homes and left in ATUS for years at a time, with very little acknowledgement given to their best interests, except for the typical, receiving assessment and treatment is in the person’s best interests argument. People are having their night time support removed and left with incontinence pads instead. But that is okay and in their best interests because the pads promote their independence. When it comes to spin in order to justify a best interest decision, the family are minnows compared to the deviousness of the State.

Sad to say but “best interests” are often used to gain compliance. You’ve got to be pretty self assured when you are threatened with the court, if your idea of best interests disagrees with the social care professional. Your lifetime of experience, love and intimate knowledge rarely counts for anything when the State wants to save money or get its way and decides to use best interests as the leverage for this. My experience in 2010 was certainly that Whistler’s Mother used every possible decision I made (or Steven made) to undermine us. I remember Steven deciding that he wanted to join a health club for a swim on Tuesday and Thursday mornings. The social worker’s view was that he should be attending college on those days and wanted to sign him up for a “Community Responsibility” class. Scared of her, we took him to one of the lessons and he lasted ten minutes before he walked out, very agitated. Rather than accept that it was completely the wrong thing for Steven, the support worker and I got blamed for not being encouraging enough.

Game playing on a sinister scale.


From → Social Care

  1. Shirley Buckley permalink

    Mark – how right you are. Best interests puts total power in the hands of the Court, the LA, the care home, the hospital,and so on. I have no way of combatting this power. I blogged Finola Moss – by being the mother of a son with epilepsy I become a criminal. The Court of Protection put a PENAL NOTICE on me to stop me influencing Martin. I cant see how “best interests” can be part of a legal process – good better best, you tell me, and interests is entirely subjective. Whatever best interests is, how can it be right, ethical or moral to alieniate the family to the point of annihilation

  2. Deb. permalink

    I too can relate to this best interests nonsense. For example – in 2008 after Southern Health,( then Ridgeway) had excluded me from decision making for my son who has no capacity, for 7 previous years. A solicitor acting for me asked S Health and the LA if a capacity test had been done on my son. The answer was no – we had one done with the obvious outcome, no capacity.
    On the strength of that S Health & LA held a supposed best interests meeting consisting of 3 people, without me or my son or involving a professional non instructive advocate.

    The outcome – I could be involved in some decision making but I would not be allowed any knowledge of his personal information – which is pretty much everything.

    Regardless of the “being involved in his decision making” agreement I still wasn’t to the point of having to apply to the C o P, which gave me a court order reminding “professionals” to work with in the MCA 2005. That too was ignored, so thats how flawed this whole system really is sadly.

  3. Shirley Buckley permalink

    I have just contacted Amnesty with my case -do you think they can help????

    • Oh crikey Shirley – I don’t know. You’ve tried everything else, so its worth a shot. It will be interesting to hear what Amnesty makes of Martin’s situation, considering they usually specialise in prisoners.

      • Shirley Buckley permalink

        Prisoners is the right word, except that prisoners have rights. Martin has no rights, because in the eyes of the law he lacks capacity, so he has no rights. I reckon to Amnesty he will be a non person

  4. Sally permalink

    What is extraordinary with the assessors is that they are seldom capable of being reasonable and putting themselves in your place. I too have had to interact with my kids before someone’s beady eye and unsmiling face as if I were a criminal-yet this was part of what was meant to be an assessment process to help us. I was flustered, embarrassed, tense and longing for the people to piss off. Their scrutiny was also upsetting my son .
    The simplest thought (“Gee, how would I feel about someone coming into my house and staring at me while I interact with my family?”) would have meant that the assessor would know it was difficult, acknowledge that to you and tried to make it less distressing. Ditto the course suggested instead of a much loved part of Steven’s daily routine. Why on earth couldn’t you just been able to have a calm reasonable discussion with Whistler’s mother? You clearly knew Steven would be very upset about missing swimming and would really have a tough time engaging with the course, even if the course was great for him. Also sounds like you had an idea the course was not going to be so great that it was worth it. Anybody who has had to drag someone with autism to a course when they want to be elsewhere will know just how terrible it can be- nightmarish exhausting upsetting! And knowing that this was a bloody stupid idea from the beginning really rankles.
    Again this just needs reasonable thought from the assessor. Of,course anybody parenting someone with LD or ASD needs to be assessed.Maybe they need help. Maybe they really have dug themselves into a way of trying to manage which isn’t going well. Maybe they are not up to it. I accept all that. It’s a very difficult job, much much harder than that of parenting a mainstream child and of course for a far longer time. But the attitude of the assessors is often critical and inhuman. Threats hover in the air.
    As you say one feels treated like a fool or a criminal .What is missing is empathy-real not pretended- and genuine working together.

  5. nic permalink

    scientology resonates, social services airbrushed my husband from even existing , he simply went unnoticed and uncommented upon, positively or negatively despite being ever present. Ditto siblings. I was the focus of their observations and attentions and they attempted to use me to curtail my daughter’s wish to live independently with severe disability up to and including the day she viewed her flat. I am involved with SS in a number of ways these days, without my badge of Mum, I am not easily dismissed and disarmed and no one is suggesting I emit green vapors, although I actually do now.

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