Alone in a crowd - with Team GB (Genetic Blip)
Thirty years after the drive to move people with learning disabilities out of austere, Victorian long-stay hospitals back into the community, could they once again, be victims of Government ideology gone too far?
A definition of supported living is 'persons with disabilities living where and with whom they want, for as long as they want, with the ongoing support needed to sustain that choice.' Nearly every Government policy supports the principles behind it but, as I've blogged previously, recent spending cuts and policy changes are blocking us at every turn. http://jgregorysharingsstories.blogspot.co.uk/2013/02/barriers-to-successful-care-in-community.html
The first supported living option we were shown was a bungalow in a cluster of three. I liked the secluded setting but, as it was too far from Chrissy's family home, I asked if there was anything similar nearer us. I was told: "Oh no, this is a one off; it was converted into three bungalows from one residential home. Ordinarily, we would never put three homes for people with a learning disability together like this as it stigmatises them, and makes them stand out in their local community."
I get the theory behind integration but, in practice, does it always work within the bigger framework of a person's needs? If Chrissy could speak for herself, I believe she'd say that her community needs to be small and contained, with lots of structure and routine, around people she knows that cherish her and accept her as she is and treat her with dignity. Chrissy's moods and health are balanced on a knife-edge. By her very nature, she segregates herself. Sometimes she loves to socialise and at other times she truly is alone in a crowd. So what would living in the wider community offer her that a smaller more secluded community couldn't? The big unpredictable space teeming with faces, sights, sounds and multiple choices that we call 'The Community' is anathema for many people with severe autism.
Last week I spoke to a parent who'd achieved my dream of having her child in a supported living setting close to her home. Prior to this, her son's complex/challenging needs had led to residential placement breakdowns - as Chrissy's had. When he'd first moved into the same street as his family, she'd told me 'it's as good as it gets.' It became the ideal I strove for and I wanted to know how she'd achieved it, but after hearing what she had to say I'm thinking: 'should I be careful what I wish for?'
"Jane, our kids are too 'special' for supported living and would be safer, and have a better life on a campus-like set-up - similar to where Chrissy is now but more of a little community," she said. "Like a retirement village but for people with learning disabilities and complex needs. As their challenging behaviour can be very disruptive to others they share with, they could live in their own home in the village, and there would be communal areas with other things going on that they could access if they chose to. They would each have their own staff team but back-up would be on hand."
Of course the wider community would be accessible too but sometimes it's in our children's best interests to keep them within certain confines to ensure their safety and maintain their dignity. Unfortunately, these core and cluster housing models are few and far between. The small rural community-based setting that she was describing sounds similar to St Elizabeth's School, which one of the children in 'Born to Be Different' attended http://www.channel4.com/programmes/born-to-be-different Chrissy, who'd been a termly boarder from the age of 14, and had been so happy there. It was geared up to the needs of its complex little pupils, and even had its own medical team to monitor their epilepsy. Specialists from top hospitals, like Great Ormond Street, routinely visited St Elizabeth's to see patients. It meant we no longer had to put Chrissy through the ordeal of attending hospital appointments in London.
The parent I spoke to explained why a similar setting, albeit one with single core residences, would be better for her son than the community-based set-up he's in now.
"He doesn't see the community like we do," she said. "He has a thing about paper and, if he spots a sweet wrapper or something blowing in the road, he will chase it, oblivious to the danger posed by passing cars. As he's a grown man, it's impossible to stop him once his mind is set on something. He has destroyed countless washing machines in his home because he's obsessed with taking them apart, and he's chucked stuff over the fence into his neighbour's garden because he can't stand the noise from her small children."
As we'd had difficulties in the past with community-based medical support from a learning disability team I asked what her experiences had been.
"Someone in the team keeps going off on long-term sick leave, so there's no continuity of care in one key area and we've had a battle to get a good psychologist. Support workers have felt abandoned and isolated because they haven't been given adequate back-up."
So can supported living work for all people with learning disabilities, even those with the most complex/challenging needs?
The prevailing ethos is that, with the right 'person-centred, flexible, bespoke support package' in place, it can. And if such an alluring support package does become available for Chrissy during these times of austerity? Well, I guess we'll have to wait and see...
I support Unique http://www.rarechromo.co.uk/html/home.asp & I'm a SWAN blogger
