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The Not To Be Trusted Family

February 1, 2019

Three stories from the last three days, all with the same theme – how the State has a deep seated distrust of families.

A client arrived for her session confused and distressed. Her autistic son will be 18 in May and social services have belatedly got round to “transition planning”. My client was bewildered when the social worker announced that when the son hits 18, “I will be making all the decisions in his life”. This had never occurred to my client before and she was left shaking with fear over what this might entail. The social worker said that  she wanted to see a monthly spreadsheet breaking down every penny that my client spent of her son’s money. “I don’t understand what I’ve done to be so distrusted”. I tried to reassure her that this wasn’t personal and that it said more about the exercise of power than distrust but she wasn’t convinced. How could she be? It’s such a shock to the system when you meet a transition social worker for the first time. My client had never heard of the Mental Capacity Act before and felt extremely threatened to hear the transition manager say, “You don’t want to be accused of breaking the law do you?”

A great social media friend received a visit from the Court of Protection visitor the other day. She receives no State support and is the 24/7 carer for her son. He likes nothing more than to have a daily bet on the horses. He is able to go through the paper and pick out his horses but can’t quite manage the process of placing the bet. His mum does that for him. The Visitor didn’t like this. It wasn’t clear whether she was objecting to an autistic man having a flutter but she insisted the mother kept tighter records of the money she withdraws for the betting. No direct accusations of mismanagement but understandably my friend felt soiled by the tone of the encounter.

To complete the hattrick, I received an email from the Office of the Public Guardian. Because of my operation, I’d submitted Steven’s annual deputy audit report a week early. The good news is that the report has been signed off and there is nothing more I need to do. However, in the “Changes” section of the report I’d mentioned something that hasn’t gone down at all well. Just before my first operation last October, I changed all the bank accounts (Mine, Steven’s and the Direct Payment account) into joint accounts with my sister as the second account holder. This was a precautionary move in case something happened to me and in light of my heart attack four days after the operation, it felt in hindsight to be a wise move. Without a second person being able to step in the fundamentals of Steven’s life would be at risk and the worst possible outcome (Back to an ATU) loomed large. How would he be able to pay for his weekly shopping and bills? How would the support workers get paid? With my sister as a second signatory, should I not survive the operation, Steven’s practical life could carry on fairly seemlessly.

During my recent operation which involved a longer stay in hospital, this precautionary arrangement with the accounts proved useful. I booked Steven’s online shopping in advance and set up transfers for the support workers’ wages. However, I needed to rely on my sister to draw out Steven’s weekly money for his transport and his trips out to buy a strawberry milkshake and the Radio Times. It’s the sort of thing that families do for each other during times of upheavel. It comes from a place of love and duty. The OPG doesn’t like this though and I was told in no uncertain terms in the email that as my sister is not Steven’s official deputy, she shouldn’t have access to his bank account. Never mind that this was a temporary measure whilst I had an operation for cancer. Never mind that his life would have come to a dangerous grinding halt without this intervention. Deputy rules are rules. It was always my intention to apply to add my sister as a joint and several deputy at some point soon. I haven’t got round to it yet partly because I’m resentful of having to use another £400 of Steven’s money for the priviledge.

There’s the rub. Putting on a bet or buying a strawberry milkshake runs the risk of accusations of financial abuse. Before you know it, you can find yourself subject to a safeguarding investigation. But it is prefectly okay for the State to take £400 off the disabled person in the name of protecting them from family financial abuse. My client lives a very hand to mouth existence and neither she nor her son could afford the court fees. She is terrified of where this is all heading because she has had an alarming introduction to where the power lies.

For the week I was in hospital, I didn’t hear from a professional soul about whether I needed their input. I didn’t want or need it but nobody was interested in Steven’s care for the duration of my absence. They must have assumed that I had put plans in place and whether those plans broke the OPG rules were irrelevent, even if they occurred to anyone.

Whilst I’m having a moan, something in a similar vein also came up last week. I received an email from someone who works as a self advocate and had just finished reading my latest book. She was critical of some of the things I do for him and my chapter about buying Steven Paul Heaton’s recent CD prompted this – “Why do you not let him find things out for himself? Why don’t you engage an advocate to help him discover new things? Why does it always have to be you?” I started to type a response, along the lines that Steven would never find out that the album existed without external input and it would take someone who cared enough and knew enough about his likes and dislikes to even begin to go looking for stuff he might like. Then I got cross when I realised I was justifying a perfectly normal act of love. I didn’t send a reply.

But it reminded me once again that nobody gets judged more than a learning disabled person and their family. It is seen as perfectly okay for the world and his wife to express an opinion on every aspect of the family life and that the normal “rules” of human engagement count for nought when judging the life of a family with a learning disabled member. Suspicion becomes the norm and is so easily legitamised.

Basically, it’s another prominent factor in turning the learning disabled person and by association, their family into being not human.

And we all know where that leads.

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6 Comments
  1. JudyB permalink

    I have a married oldest daughter. We point each other in the direction of things we enjoy, radio books, films, TV programmes, clothes etc. Go to things together. How weird it would be to have some 3rd party step between us….yet if you are learning disabled this normal life would be a bad thing?

  2. Maureen Barnes permalink

    You have no idea! Once a learning disabled person reaches 18, your normal life becomes a kind of guilty secret, while you try to pretend that a stranger who knows very little about them can nake better decision on dubious grounds than you can.

    I was thinking today that my daughter’s carers, “trained” by being with her, and caring, do such a lovely job. The thought of losing them and having to go back to the “now you see me, now you don’t”variety is terrifying. (And if anyone knows a good way of avoiding that, any advice would be vry welcome. Getting old, and anxious.) My daughter has blossomed and thrived on good home care, with minimum input from “experts”.

  3. My daughter is now 22 and in University (doing an MSc). She has ASD, and her main need is simply someone to keep an eye on her that the anxiety doesn’t become overwhelming. She doesn’t welcome intervention from me, and I haven’t found a way to solve the riddle of giving help to someone who doesn’t know they need it. We have no social services involvement, so I’ve not dealt with the officiousness you describe.

    But I live in fear for the day, this summer, when University ends. Where does she go, what does she do, how do we pay for it (she currently receives a basic level of PIP) … how do we find out without putting our head above the parapet?

    It shouldn’t be this way.

    • Maureen Barnes permalink

      That’s a tough one. I do agree with the assumption that EVERYBODY has the right to make bad decisions, but it is tough on parents. I think talking to other parents, learning the law, finding out as much as you can about how your local social services operate. – and, of course, learning all the gobldygook language that Mark is such an expert on.

      We don’t own our children, but it sounds like your daughter has and knows she has your support, and is doing pretty well. Good luck with learning how to navigate the mine field.

  4. Jayne knight permalink

    The whole idea of having a personal budget was for precisely the opposite to how it turns out in reality. There are circumstances I’ve seen regularly in my work in welfare rights where the income of the family relies on the benefits of an individual too. While people may judge that often people have had to give up jobs to help look after people such as an elderly parent or their young child. So it’s not always that easy to manage financially. The courts just take one view and treat everyone as a potential criminal and it is cruel, adversarial and uneccessaey. There’s a good way I’m sure you could get a feel for things and also help if you see it’s because someone is struggling. Of course take action if someone is very obviously exploiting someone no one would disagree with that
    But it’s constant and applies to the care of older people too. Just one thing after another to drive you down.

  5. FF2016 permalink

    I suppose the thing that really horrifies me is that many care home service providers take as much profit from fees as possible – while people’s food isn’t high quality, heating often is reduced, day trips out are restricted to summer, decor is often poor, and furniture cheap, I could go on – whereas care home owners live in luxury.
    So why don’t they account for money also?

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