Billy No Mates
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.