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Self Doubt & Tiny Chinks of Light

July 9, 2016

Checking my emails before bed last night, I’d received one from a person who had heard me speak at a Mental Capacity Conference last year. I’m not writing this post to be critical of the person. I think they have a very fair point. I’m writing it, partly to help me process the dilemma and also to show that for the families of a learning disabled person, the Mental Capacity Act isn’t just a piece of statute (whether you like it or not). It’s a very emotional piece of statute.

Basically, the email writer had taken exception to a post I wrote a week ago about Steven’s housing situation. They picked up on the bit where I said I hadn’t told Steven yet about the demolition and therefore, wasn’t telling him about the properties that have been popping up on Housing Options that I have been bidding for. Here’s a piece from the email:

“You, more than most, should know that the MCA is meant to be about supporting people to make decisions. Not only, are you not supporting Steven to make a decision on which properties to bid for, you haven’t even let him know that there is a decision to be made. You are critical of professionals not following the Act. Aren’t you guilty of exactly the same thing?”

Ouch!

As I said, I think the correspondent is making a reasonable point. At the moment, Steven has no idea that he will be moving soon because I haven’t told him so. I’m not at all comfortable with withholding this important piece of information about his life from him. I would be far from happy if someone did the same to me.

My defence is it’s a best interests decision. For whom? Well obviously for Steven. We have been through this before back in 2013 and I remember too well, the terrible anxiety for over six months that he experienced. (https://markneary1dotcom1.wordpress.com/2013/08/05/get-back-in-the-box-wolfman/) I know what he will ask if I tell him that we’re moving again. Where To? And When? And I can’t answer either of those two questions. Delivering the information without answers to those questions seems very cruel to me.

I must admit that, for the time being, not saying anything makes life easier for me too. I can’t describe how stressful I find the bidding/raised hopes/silence/hopes dashed process on a weekly basis. It’s horrid. To add the extra layer of Steven’s anxiety and subsequent meltdowns to that process feels unbearable.

That is my defence and I know that it has nothing to do with the Mental Capacity Act. Whatever my motives, I know I’m turning a blind eye to a chunk of the legislation.

Then yesterday morning – BOOM! Competelty out of the blue, I received an email from Steven’s social worker, who had just had a meeting with the Lettings manager. Here is the crucial paragraph from that email:

I  can advise that the tentative date from *** (the Housing Association) for people to move is April 2017.

As previously advised, they will be looking to move people six months prior and the arrangements for rehousing tenants will be done on a case by case basis.
In Steven’s case they will be looking at direct allocations and at my meeting, I was advised that we have a new scheme coming up called P*******, which is in the local area.
Please let me know if you would like me to put Steven’s name forward for one of these flats. It is due to open later this year”.
She included a link to the property’s website. OMG. It is a brand new development. Several two bedroom flats on the first floor, with a balcony overlooking the marina. All the kitchen white goods included. Carpeted throughout.
Packet Boat Lane
Later in the afternoon, my sister and I went to have a lookover. It’s five minutes walk along the towpath from my flat. I must walk around Cowley with my eyes closed. The development is complete. Nobody has moved in yet. We were able to stand on a ledge and look through the ground floor windows. The carpets have been laid and the white goods are installed. From what we could see, it looks like they are ready for people to occupy imminently.
I phoned the social worker and said “Yes, yes, yes. Please put Steven’s name forward”.
And now we wait. Do I tell Steven? He’s now in the Direct Allocations category, so we’ve escaped the bidding process. But nothing is certain yet. I keep asking myself and others the same question: “Would someone be cruel enough to ask if you want your name put forward and then not come up with an offer?” Because, there is still that slight doubt (and this is Hillingdon after all), I feel it’s best to keep schtum for the time being.
I don’t like doing that.
Packet Boat House 1
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From → Social Care

17 Comments
  1. Sheila Hanly permalink

    I will keep everything crossed for Steven to get this place. Sounds perfect.

  2. Eve Smith permalink

    So pleased for you and Steven..I also refrain from telling my son anything that may cause severe anxieties, I’m not sure whether the person who criticised you has lived experience but I’m sure anyone who has a son/daughter with autism would do exactly the same in your
    position.

  3. Yes you have to keep silent but it must be so very hard. Good luck!

  4. Seems to me you’re following the MCA right – apart from Best interests decision, you should be engaging him and communicating in a way which best works for him & his decision-making. To be just talking to him now wouldn’t help. He’s no choice about staying and there’s nothing definite to offer. You clearly will be engaging with him when there is something definite – and as far as I can see that’s the best way to communicate and engage with him – when there IS something definite. Hard for you but right for him. In fact there’s probably no decision for him to make – it’ll be how best to present and help him understand the unfortunate position he’s in. Fingers crossed that what sounds ideal happens!!

  5. Looking at what has happened to Emily Clark just this week – prone restraint for 20 minutes, entirely attributable to her anxieties over her housing uncertainty – I don’t think there’s any question but that the course you have reluctantly decided to take is in Steven’s best interests.

    Completely understand your worries about getting your hopes up, but it’s very exciting! The flats look gorgeous. Just the place for Hillingdon to offer a local VIP – how many other honorary life founder-members of LDE do they have living in the Borough?

  6. Carole permalink

    You are doing everything in the “best interest” of Stephen don’t let those with breath taking ignorance on your individual undermine your confidence it will be challenging enough just preparing him for any move if and when it comes without overwhelming him due to the instability of the current letting sector. I have everything crossed that you find him some permanency best wishes

  7. Ann Earley permalink

    Delighted that there might be a suitable home for Stephen but I heartily agree with you on the withholding info.thing where appropriate. We never tell Si anything in advance now as after all his traumas it just raises his anxiety and stress levels to fever pitch and his behaviour deteriorates accordingly. Even on the day when he moved into his new home I couldn’t tell him until I took him to the door and explained it all to him. I had huge reservations about not discussing it with him first but it just can’t happen sadly. Now holidays etc are all sprung on him but he tells me he likes the element of surprise! Phew!

  8. Steven’s name is going forward, brilliant . Only you and those closest to Steven will be familiar with the need (if any ) for appropriate sinking in time for the reality of moving home in the very near future. It doesn’t look as though you can realistically keep things too close to your chest for much longer . Steven is being treated as a priority, I hope he comes tops, best wishes Steven.

  9. Ruth Westnidge permalink

    So hoping you get it smoothly. Been following your blog since I saw a link to it on BBC News. Really crossing fingers for you and Steven.

    Ruth

  10. Frannie permalink

    So agree, On a daily basis we have to use best interest as there are times informing/ giving a choice something can cause a level of anxiety/ excitement can be so difficult for him and for us to live through, as families we always have best interest and quality of life , health and well being at the centre of our loved ones lives.You Are inspirational so hope this all comes good for Steven

  11. Jayne Knight permalink

    Just so keeping everything crossed Mark it was the best news ever and it would be perfect. As someone who has had this dilemma so many times I make a judgement about it because I’ve seen the terrible effect ofthe anxiety and the disappointments. You are doing exactly the right thing by not saying anything. The problem is shouldering the responsibility for that yourself. You need to have something to show him that is going to be definitely yours. This does sound very promising and it looks fantastic
    So excited for you

  12. I don’t know if you believe in prayer – but I do, so I’m praying that you can soon tell Stephen all about it … with all the answers to his questions ready to go!

  13. Maybe the person sending that email has little understanding of what it’s like to experience autistic anxiety on a daily basis! We would have made exactly the same decision as you for our son’s wellbeing. Good luck with the flat, sounds amazing 😃

    • And even more importantly, the affect, such constantly changing, unreliable information would have had on Steven.

      Don’t Steven’s feeling/life figure with all these authorities and critics?

  14. simone permalink

    fingers cross for Stephen. I would hold on tight as from my experience – loads of people with LDs are “offered” places after viewing – only to be put onto a waiting list for the property – this is even after the person with LDs has gone and visit and had a care assessment, la de da… In this situation the person with LDs has no idea whether she or he be waiting days, weeks, months, years or even indefinitely. It gives person with LDs some “unrealistic” hope and then she or he gets very frustrated and unsettled in the meanwhile. With a friend of mine I keep on encouraging her to ask the bogie question – HOW LONG IS THE WAIT, WHERE MY POSITION IS IN THE WAITING LIST etc – this is despite having a direct allocation. Mark can do please do the world a favour and ask the bogie question – HOW MANY PEOPLE WITH LDS have been offered a place and how many flats are there – two simple questions that the HA or Council should be able to answer. It’s only THEN will you know whether Stephen has a real or “keep you” quiet offer of a property. It maybe that the HA / Council offer more people with LDs than number of flats available in case someone drops out for whatever reason. Good luck.

  15. Dear Mark
    I wrote this immediately after you posted but I have sat on it, thinking it might be too personal and impertinent for me to send. It is free thinking and incomplete- since it leaves things unresolved, but I thought I would send it to remind you of how you inspire thinking in others with your disclosures, safe in the knowledge that if it is too personal or just too out of sync with your thinking you will not put it into the public domain.
    MCA conundrum

    Another expression of this key moral dilemma might be the power dynamics.

    The issue of a person’s fragile vulnerability to the power of others stretches both ways.

    The gross imbalance of power that affords a sliding scale of abuser the opportunity to exert their power over others for their own enrichment, is also expressed by the carer who exerts their power to a utopian ideal of a life where shit never happens, or one in which the shit that happens is someone else’s responsibility and sometimes liability.

    In my practice I have seen both sides of this balance perverted consciously or otherwise. I have seen the abuse of this power through exploitation, cruelty, perversion and many other human failings result in direct and appalling harm to vulnerable persons.

    But what does the other end of this spectrum look like? What are we aiming for in caring for others? What is the extent of our responsibility in managing the experiences and environment of another person? What if our lives had no random unforeseen problems to deal with – would that make us better people? I know that it is extremely irritating and difficult for those around me to cope well with my life when I am dealing with stuff that impacts on me and my plans. I share their frustration that at least some of this shit comes about as a direct consequence of my nature and how that deals with whatever it is that challenges me. I also know that every challenge has had its gift, and these gifts enrich and broaden my life. (Sadly not at the time!)
    Nature appears to make no distinction in terms of shit happening. Life-limiting disease ,for example, appears not to consider the -are-existing vulnerabilities of its target in visiting its effects on our bodies.

    I asked a master joiner once how he managed to make such perfect joints every time. With the air of a man sharing a life secret to me he told me that the sign of the craftsman was not that he made no mistakes, but that he knew how to deal with them in a way that made no difference to the finished article. To prove his point he showed me a multiple compartment fishing box into which he had put samples of about 20 different shades and types of sawdust. He handled it with the reverence of a mystic displaying the ingredients of a spell – and assured me that I would not see his mistakes. It is inevitable that shit happens; the craftsman is one who has learnt to deal with it.

    The MCA and various other key statutes dealing with offences against the person are directed towards only one side of this dynamic. Although we can find ways of describing an overly protective or restricting carer in the terms of the abuser/assault/domestic violence or S44 MCA etc, it is difficult and there would need to be a really high threshold – and anyway, it is not what we are looking for.

    What if many of our fellow citizens that we have cared for beyond reproach (or without reproach perhaps) may have had more natural, fulfilling and richer lives if they had lived through and coped with a little more of the random shit that we have prevented them from experiencing?

    How do we know what level of random shit a vulnerable person can experience before they experience it as abusive? On the other hand, how many of my life experiences have struck me as intolerable and sometimes appeared to be beyond my capacity, or resilience? Community mental health workers often encounter people who have greater challenges to their mental health than they can cope with alone, where these challenges have arisen in quite ordinary ways that could conspire against any of us. Perfect storms of bereavement, loss, conflict, separation, redundancy, abuse and just bad luck that can transform a person’s outlook and capabilities.

    There appears to be a threshold at which we the state are required by the will of the people expressed through practice and embodied in policy and statute where we have decided to take on the responsibility for another person’s shit. We feel that it is a sliding scale, but it is often a very steep cliff and the momentum can sometimes be the tolerance of the clinician to the uncertainty of another’s life, which goes along with an awareness that if some of the uncontrolled risks are realised then the record will hold them to account. At least such a person can expect a relatively personal dimension to be overlaid on this scale, since the practice is to measure progress from their own past and they can be a key participant in adding their awareness and confidence into the equation. This is clunky but there are decades of case law that offers depth and guidance.

    However, this is predicated on a person loosing independence- what of those who have never left a defined vulnerable state, or those who have entered a new and unchangeable position of vulnerability? How, on earth are we to know where to set the threshold for shit that happens?

    Your’e a parent, it’s a special position, naturally and emotionally, this moral dilemma is in my respectful opinion, at its heart, the ordinary one of a parent, it is the essence of the shit that we deal with as parents. Over the years you will have found remedies and compartmentalised the more successful and pragmatic ones that do not destroy the intended best option available outcome. That you still reflect and agonise over this power dynamic, and given the fairly public successes of your advocacy for your child’s (whatever the age – am I less of a parent to my adult children – am I ever not dad?) it is clear to say you have already mastered it.

    Even though your journey to expressing this dilemma has come from a philosophical, and professionalised understanding of society’s tolerances laid down in law, the actual dilemma for you is the ordinary one of a concerned parent, that you are very familiar with, and probably expert in negotiating and resolving.

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