It’s been nearly a year since I started to write my “Death Plan”. I’ve found it such a difficult experience that I work on it for a day and then put it away for a month in order to deal with the pain the one day’s work has generated. The point of the exercise was to put together a series of documents that detail all the things that would be necessary for Steven to continue living his life in his own home after my demise.
I’ve finished it. There’s one more practical job to do. I’m leaving that until the New Year and hope I don’t get run down by a marauding reindeer over the next four weeks.
I gave an interview to the BBC about the Death Plan back in the summer and you can listen to it here:
So, how do I feel now that the task is complete? I feel a small sense of satisfaction. I can’t think of anything I’ve missed out and I hope I’ve covered all bases. It all fits into one folder and it shouldn’t take an awful lot of effort for it to be actioned. But there’s the rub. Even if it was just a one page document, it is still reliant on a professional making an effort. On the other hand, it doesn’t need any professional effort at all. I’ve assembled a “team” and it would be totally realistic for them to take over without any professional input. It won’t be too big a challenge for the team but doing nothing will be a huge challenge for any professional. Can they loosen the reins and not demand a personal budget audit every month? I don’t think they can. Can they accept that a humble support worker can manage the online weekly shop? I doubt it.
And it’s because of those question marks that I have very low moments when the whole project feels utterly worthless. I’m aware that the final plan is basically saying to the professionals, “do nothing”. Do the yearly assessment. Pay the money. And leave the rest to the people who care. To the people prepared to make an effort.
The last two days I’ve been following a thread in the Facebook group “NHS England Learning Disability and Autism Engagement”. It’s a heart sink experience. I don’t doubt the sincerity of the people running the group but it’s another example of “engagement” on someone else’s terms. It feels like, sadly, like the appearance of engagement, rather than real engagement. Because so much of social care is playing at engagement, that’s why I fear for Steven’s future after I’ve gone. In an attempt to keep up appearances and pretend engagement, he could have his life ruined.
Why I feel so fearful for the realisation of the death plan was crystallised by a post in the Facebook Engagement group this morning. A call went out for families to engage with an “evaluation of building the right support”. It’s a cruel stunt. It infers that there’s some secret out there that we haven’t yet discovered and until we do, the current dreadful status quo must continue.
We don’t need any more evaluation. We don’t need any more research. We don’t need any more transforming champions. We know all we need to know. We know what people want and what people need. We know what makes a good, fulfilling life. No more illusory engaging. Let’s do some doing.
For the rest of my life, I know my death plan teeters on a knife edge. It could mean that the second half of Steven’s life could be as meaningful as the first. Or it could mean that the life he loves ends.
For the time being I’ll try and concentrate on the engagement he has with in his life and give a wide berth to the pretend engagement of the people who don’t do.