This is the final blog post in a series written by author and mother, Viki Ainsworth, who has been sharing with us her experience of her daughter Tilly’s transition from children’s services to adult’s services. This is part 7, you can read part 1 here, part 2 here, part 3 here, part 4 here, part 5 here and part 6 here.
Once you have found what you’d like your young adult to do, you have to put together the proposed shape of the week and the costs involved. This is when I did get someone assigned to us from County, who would put our proposal to the management to see if they’d approve what we’d found for Tilly. This is also stressful, not least because they don’t say how long it’s going to take. You get no transparency on the workings at County as to who approves the package, how often they meet, what criteria they’re working on (I’m assuming Tilly’s care assessment but as I have never seen it I don’t know what they’re looking at), plus what happens if they don’t approve it. Does it take days, weeks, months? Then how long until the money comes into the Direct Payment account and you can access the services you’ve identified? What if there are no spaces left by the time your finance comes through?
We were told that our finance package would be submitted for the five days of activities but her current respite package, which also went into the Direct Payments account, would make it too much so that was being taken out. So I’d have to decide between day time activities or respite. I’d have some money but it wouldn’t cover everything so I would be deciding which bits were more important on a week to week basis.
This, to me, was not good enough. I emailed our case worker many times, ensuring I copied in any managers that I had email addresses for, explaining that under the Care Act of 2010 Tilly was entitled to an independent and meaningful life. That just because she had learning disabilities she shouldn’t be made to choose between having something constructive and enjoyable to do during the day and spending time overnight away from home. At approaching 21 years old she should have been out at college, or university, studying, partying, travelling, having fun with friends. As it stands, I have to make that happen for her and I would do my utmost to make sure it did happen.
We got the whole package approved. So, now Tilly spends three days a week out in the community with two lovely, amazing group leaders who she adores, and two days a week with her Mencap pals who she also has a blast with. And she still gets to spend time with her respite carer who she loves being with more than she does being at home!
Tilly coped with the transition better than I did in the end, one of the joys, I guess, of living in the moment as she does! She was blissfully unaware of the stress of leaving college and has taken to her new regime like a duck to water.
We’ve been lucky that the only two provisions I heard about happened to suit Tilly and had space to take her. And that we got the finance package in place. Who knows where we’d be if any of that hadn’t happened, but I can almost guarantee that mine and Tilly’s mental health would have suffered (more than it had already).
So yes, we have a happy ending to our transition story, but it was such a hard journey to get here and I can’t help feeling it didn’t need to be. What’s needed? Perspective, support, transparency, direction, and some options on what’s available. And of course it probably varies county to county, so maybe some cross border sharing of best practice might not go astray either.