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Billy No Mates

March 7, 2017

I’ve just had a phone conversation with the OPG that I had to cut short because it made me throw up. Literally. I had to cut them short and say, “Excuse me. I have to go to the bathroom”, where I promptly vomited!

Since I submitted the annual Financial Deputy report back in January, we’ve had a series of letters/phone conversations about my management of Steven’s finances. I’m not giving actual figures as last time I did, I received some rather judgemental comments. But all the communication stems from a basic position of mistrust and a presenting position of safeguarding.

I’m aware of the ethos of the OPG. Two years ago, I spoke at the Court of Protection conference. The first speaker was the lead officer for the OPG and she gave a superior, sneering speech which consisted of story after story of families ripping their incapacitated person off. Of course that happens and it is unforgivable but I like to think is the minority. I was so angry, I whispered to the organiser and asked if I could change my talk to give another side to the family deputy.

Today, I decided to take the bull by the horns. We’ve been getting nowhere with these suspicious letters and I clearly am unable to answer their questions to their satisfaction. Fed up with feeling like a slimeball, I decided to ask them, “Tell me exactly what you want me to do and I’ll just do it”.

The sticking point has been those expenses that I pay for on the weekly shop that we both use (Toilet rolls, lightbulbs, Brillo pads etc). Also, those bills that supply the basics we both benefit from (Gas, Phone etc). I’ve never bothered to work out the exact proportions, so share the costs out between us.

The OPG takes the view that Steven is the tenant, therefore all the bills should be in his name and all the expenses come from his account. From now on, if I choose to contribute to those bills, that is down to me and I can pay money into Steven’s account to cover my share. That’s fine and now it has been spelled out, I can start changing all the direct debits into Steven’s account.

The thing that makes me nauseous though is the refusal to acknowledge family relationships and the dynamic that takes place in millions of family homes. And at the bottom of all this is the operating principle that a learning disabled person is not quite human so doesn’t live like the rest of us.

I mentioned to the OPG that the other day, I saw an advert for the touring version of The Jersey Boys and asked Steven if he wanted to go. He was well up for it. It’s on at our local theatre at the end of May on a Friday. I told Steven he could go with Alan & Das, who do the Friday shift and he said, “Want Dad to come too”. I’m happy to go but felt, at £23 per ticket, it was morally dodgy to expect Steven to pay for me too. He has to pay for the support workers but should he pay for me too?  Steven doesn’t really understand money, so won’t know if he’s paid, I’ve paid or the tickets are a gift from Frankie Valli himself. But that’s not the point. It doesn’t sit well with me that he pays the whole bill. In the conversation with the OPG, I compared it to going out with my mate this Thursday. It was his suggestion to meet up but I’ll buy a round, he’ll buy a round and we’ll probably go Dutch on the cost of the meal.

I said to the OPG, “I’m sure you do the same when you go out with friends. Isn’t that what mates do?”

And here’s the killer that left me vomitting: “You’re not his friend though. You’re his carer”.


Yes, Steven must be independent. Yes, he must pay his own way. Yes, I am a guest in his house, four days a week. I get all that.

I don’t get that learning disabled people aren’t allowed normal family relationships. Nor friends. And I certainly don’t get that in the eyes of officialdom, Steven and I do not have a relationship. Or rather, we do but it is seen as indistinguishable from the relationship he has with his carers.

I’ve made a list of all the organisations and companies I need to phone up and change the direct debit details. For some reason, I feel a bit weepy and can’t rouse myself to get started. They’ve given me until 15th March to comply with their orders, so I need to get my act together.



From → Social Care

  1. I’ve read this a couple of times and, from an accounting point of view, that the OPG position is sensible in what they are requiring. In fact, I’m struggling to see why this developed in the first place. It reads as if you Mark were asking them to deal with an additional layer of complexity rather than the other way around?

    Quite confusing.

    • There has never been an issue with the expenses that are purely Steven’s (e.g his membership to the gym etc). What I’ve always done going back to the days when I was the tenant, was to transfer a sum each month from Steven’s account into my account to cover his share of the housekeeping. What they are now saying is that it should be the other way round – I pay into Steven’s account for my share of the household bills. I don’t have a problem with that at all, even though it doesn’t take into account the dynamics of family life. What they keep questioning is the elements of bills that are used by both of us. They become trickier to apportion. But having discussed the matter now with a good friend and the fact they refuse to see the relationship between Steven and me, it does make things easier for me. I can leave Steven’s account to take charge of all the bills every month and I’ll deposit some money in there as my contribution.

      • One thing that strikes me as interesting John, is where you say I’ve added in a layer of complexity for the OPG. I don’t feel that I have but supposing that was the case. I manage the finances the way I do in the easiest way for me. The OPG only has to deal with my accounts once a year; I have to deal with the finances weekly. Surely one can set up a system that makes one’s life easier, rather than have to put the annual auditor first.

      • The duty is definitely on the OPG here, don’t get me wrong. Their advice and guidance should support you in providing evidence that Steven’s financial well-being is being looked after.

        It looks to me like the way you were providing evidence was highlighting the liabilities in your fiscal relationship with Steven rather than the contributions. The money flowed outwards from Steven which is precisely what the OPG sees as red flags to be investigated. This meant that you had to demonstrate the complexity of your relationship and who owed what down to tins of beans and toilet paper.

        By changing the methodology as the OPG have now advised you, what they’ll see is your contribution to Steven. The money flows inwards to Steven. The OPG will be relaxed seeing additional contributions. It doesn’t raise flags.

        On a OPG spreadsheet, ‘Mark Neary’ is no longer presented as a deficit (in red).

        Now they can see the fiscal contribution, they can discount the shared meals or how many rolls of toilet paper you used per week whilst at Steven’s flat because you have provided the evidence of money going into Steven’s account. That’s a lot less convoluted than what you have been doing to evidenced why you were taking money out.

        Hopefully this process will be significantly less painful next year.

  2. Julie Johnston permalink

    But you’re Steven’s dad. Chances are, you might be going out for a couple of drinks and some food and share costs. That’s what family and friends do
    I’m lucky in that I’ve not had any hassle with opg. One time , when I phoned, the lady was very nice, Favre answer a to my questions and said that. .nothing was a stupid question

    • My experience is there is a big difference between the staff at the assessment centres and the official visitor. We get an annual visit and the woman is great – straightforward, realistic and human.

  3. zero ‘shared ‘ expenses fine , Steven’s wants and needs exclusively fine. Separate that from the appalling comment that need not have been made .
    Steven is as entitled as the next person to extend paid for social invitations to friends and/or family. Held the view that the OPG would have anticipated and accepted a unique record for the majority of people to represent ‘ gifts ‘ made in accordance with wishes. If Steven happens to invite someone along to an event besides paid for support he can pay for them. Over zealous scrutiny of gifting and legal rewards from personal budgets is an invasion of privacy and a threat to wellbeing. Person who spoke to you was an idiot.

    • The person he is inviting is me and as I say in the post, I’m uneasy with the assumption that he should pay for the whole of my ticket. He doesn’t need me there, he wants me there.
      If a friend asked you if you fancied taking in a show, would you expect them to buy your ticket & cover all your costs for the evening out.

      • Steven has asked you along as Dad of course for the pleasure of your company , whether or not he would wish to ‘treat’ you I have no idea, I would not assume he should.
        Perhaps treating is something he has done in the past / continues to do sometimes because he wants to ( I understand Steven doesn’t necessarily ‘understand ‘ money but he will obviously have his own thoughts around getting/giving and sharing that bypass financial transactions ) .

        I wouldn’t expect a simple invitation to be all expenses paid ,no.

      • This also feels over-complicated.

        Isn’t the process here that Steven is buying the ticket and you can pay him back later? Either by adding the cost of the ticket to your fiscal contribution to Steven’s account or you reciprocate the gift by getting Steven a different gift later or paying for food whilst out at the theatre.

        Remember the OPG are interested in Steven’s expenditure, not yours. How you spend your money is your concern.

  4. Magi permalink

    You might as well be asked to pay for the air that you breathe whilst at Stephen’s flat.

  5. weary mother permalink

    Water rate – per toilet flush. Paper – per sheet ?
    And do you take sugar ?

  6. Cathy Hodge permalink

    OMG. I can’t believe how they are treating you.
    These people are so focused on “the rules” that they cannot empathize with humans. I thought family was the most important thing, but not to these automated machine people.
    If it wasn’t so awful, it would be comical, like a telemarketing caller with a script that can’t be varied.
    Ps: for some reason, I can’t place comments on any of your Facebook posts.
    I’m only getting the option to like or share, but missing the comment tags.

  7. simone aspis permalink

    Mark I am surprised that you are not accusing John (who has not previously posted here) as being judgemental or supportive of OPG – clearly he thinks (NOT ME) that there is good reason – I say this because you got heavy handed with me unreasonably – Unclear why you choose to be heavy handed with me rather than others – I see you have quoted ticket prices – unsure why we all needed to know how much it costs to see a concert – could have said £x for the ticket.

  8. simone aspis permalink

    I do feel you treat some people with less harshness than others – is it because of our backgrounds?

    • Simone. John (who is a longstanding acquaintance of Mark’s) is, in his first comment, asking a genuine question. He allows for the fact that he is confused and maybe doesn’t fully understand the situation. His second empathises with Mark’s difficulties, while explaining an accountancy viewpoint of the current and proposed systems. It’s a respectful, positive discussion, aiming to arrive at clarity and mutual understanding, if not necessarily agreement. That’s all.

      There was nothing in it referring to you, and by being critical about style and content, and then appearing to try to make it ‘all about you’, you are positioning yourself as the most colossal (and, I’m sorry to say, unkind) buttinski. As far as can be gleaned from the blog, nobody knows the first thing about your ‘background’ and no-one shows any signs of wanting to; but equally people can’t help noticing that you come across as acting from a position that’s a frankly peculiar mix of poor-little-me-ism and moral-high-groundism. It makes you sound both chippy and self-righteous. Do yourself a favour and try to see things through others’ eyes, not purely from a self-focused personal viewpoint. Please.

      • is being a ‘ peculiar mix ‘ so bad , from memory Simone promotes self/peer advocacy and has expressed frustration at parent/supporter led groups ( would explain the ‘ our backgrounds ‘ question posed ) Simone may be chippy and self-righteous and/or unkind , maybe not.

        OPG representative was clearly an arsehole who chose to be offensive.

  9. LizzzieD permalink

    I don;t think that this is even remotely sensible or justified. Does the OPG have any reason to suppose you are MISusing Steven’s funds? Unlikely. Is it possible to keep crystal clear accounts when family members share a home? Not really. It IS possible to drive a family carer nuts with stress and anxiety TRYING to second guess what the OPG might raise their eyebrows at.

    If the OPG person does NOT understand just how inappropriate it is to tell you are “just” a carer, like you were an employee who can give a week’s notice and walk away, I am not sure what their training is like.I am not too happy with “not a friend, just a carer” but not a parent just a carer is far worse. Can they not get their head round the idea that you are well used to being both. I am not sure just how much Steven understands money, but I assume he just knows he would like to share a pleasure with his dad, and isn’t likely to be too bothered or interested in how that happens or the cost. For you, adding it up, using his funds doesn;t feel right, and you should be trusted with that.

    Family does matter. A lot. And Steven knows that too.

  10. Karen Blair permalink

    I would suggest you get the ‘nice’ OPG man to put his instructions in writing so you can show it to the DWP/housing benefit when they start asking Steven about this additional income. Ridiculous state of affairs!

  11. weary mother permalink

    I agree Lizzie…Big Brother logic.. or what ?

    In Scotland it is usual for a close relative to (conspicuously) ‘slip’ a pound coin into a child’s hand when they visit . Using the rigid logic of OPG – family seen as ‘just’ carers – should this transaction be reported by mum/dad as potential inducement, or declared to tax office – as unearned income?

  12. Pauline Thomas permalink

    When for god’s sake is this all going to end? Mark have you got to be justifying your every interaction with your son for the rest of your life? Smacks of big brother to me and must be agonisingly despairing for you.

  13. Thank you for the extra information, Nic. I think I would have been more accurate about my thoughts if I had used the word ‘baffling’ instead of ‘peculiar’ and I apologise for causing misunderstanding and offence by a poor choice. I am not saying that Simone *is* chippy and self-righteous, but I do feel that she (possibly inadvertently) presents herself as such and in her own interest (and the interests of those she seeks to represent), she might find it worth reconsidering her approach.

    With regard to advocacy, I’m delighted if Simone is a self-advocate and is willing to peer-advocate for others who want her to. More power to her elbow; there’s not enough of it about. I can understand why, in those circumstances, a person of her obvious intelligence might find some parent/supporter-led groups frustrating. I don’t think any of those (putative) activities/experiences would in any way entitle her to act as if she could appoint herself, unasked and with no pressing justification, to a peer-advocacy rôle for an individual with whom she is unacquainted; or to approach the individual’s actual (parental) advocate in a critical and aggressive manner; still less to seek to drag in a third party as new fuel for the dying embers of an old confrontation.

  14. And yes, the OPG person was a boneheaded, shrivel-hearted jobsworth and deserves to have a formal complaint made about them for the inhumanely insensitive way they spoke to Mark and about Steven.

  15. It’s very easy to attack parents (and some may deserve it), but not attack services making huge profits for poor and dangerous care.
    A society’s nature is said to be seen by the way it treats it’s most vulnerable, and ours fails overall, as although great minds created the care system, it was hijacked.
    I want language of compassion, and ask (like Sara’s animated films ask) what’s special about specialist services, without any fear. It’s our right.

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