27.11.18

Our daughter’s away at respite. The months are winding down and soon she will be too old to go to the centre she’s been to every month for the last couple of years. It’s for young adults only. The time is nearing for more assessments, reviews, wrangling; more looking for another placement when in reality we know there’s very little – if anything – around for her. We’ve planned to tackle the paperwork this weekend. What we really want to do is catch up on sleep, walk, drink coffee and relax. We’ll try to do at at least some of these things. We need a week, not a weekend.

I peer into her room. It’s bright and sunny, colourful – a reflection of her at her best. Books are piled at the foot of her bed, her beanbag is plumped up, fluffy dressing gown hanging on the side of her wardrobe waiting to be worn against the cold evenings to come. Her cd player is switched off, discs carefully tucked away at the back of her dresser out of harm’s way. They can be very biteable in the middle of the night. Her latest thing is dancing in front of the big mirror we’d bought for her room at the residential care home she moved into in 2016.

It’s two years now since she was summarily evicted from there by care providers who didn’t even have the decency to tell us so directly. Instead we were given the news by her funders, on the phone initially. Just four weeks notice to leave. No transition, no discussion. No follow up by home manager or key worker, both we discovered with no previous experience of working in a care home for people with complex needs. The last review meeting we’d had at the home had in fact been positive and we’d been given no inkling that this bombshell was to come. 

Being cast in the role of “too involved parents”   – the principle reason for eviction – was, and still is, hard to deal with. We’ve heard similar stories from parents like us who only want the best for their vulnerable children and adults, and firmly believe in partnership working.

We try not to think of that period, of the weeks and months that followed. It was painful, traumatic, devastating for all of us and the recovery was long. Our formal complaint, eventually escalated to the highest level, resulted in a brief apology for only some of what had happened and left a very bitter taste. Building trust again has been challenging and it’s taken time to get together a solid team of excellent and bright PAs who are keen to work with us to ensure our daughter has a good life.

Now we are back to looking at the future, albeit only for respite. Once again our daughter is to be evaluated in terms of her needs, the risks her disabilities and health issues pose to her and others – and ultimately the financial cost to whoever funds her. The process makes us extremely anxious. She’s in such a great place at the moment. Why rock the boat?

A call comes through from the respite centre. “It’s nothing to worry about, just a meds question,” says the support worker. “She’s absolutely fine. She’s been dancing…”