Help for autistic people like my brother is being cut – how will they cope?
|
Version 0 of 1. Last week my little brother turned 21, which means, without doubt, that he is now an adult. He is severely autistic, epileptic and in full-time care, but an adult nonetheless. This, in some ways, is strange to me; in my head he will always be plump and six, with an uneven haircut and pink wellies with elephant faces, and I, six years older, will be his protector. In fact, he's over six foot – much bigger than me, big enough that, when he was 14, my mum couldn't cope any more. "I'm your best friend," I would whisper to my brother fiercely, when he still lived at home, as we hid under the covers, playing tents. I wanted him to know that he had one friend, at least one. In fact, he is fortunate to have many, though they are perhaps not friends as you or I would define them. Heartbreaking statistics released by the National Autistic Society this week shine a spotlight on the social isolation felt by many people with autistic spectrum disorder (ASD). They found that 41% of autistic adults often feel lonely; 36% don't leave the house most days; 44% stay at home because they fear abuse or harassment; and 49% report being abused by someone they thought of as a friend. Considering that the survey will have been completed only by those ASD sufferers with some insight into their condition and some communication skills, it's likely that, if there were some way to take into account the severely autistic and non-verbal such as my brother, the figures would in fact be higher. I know that he feels lonely, sometimes, because he cries if too long is left between visits, and when we leave. The reason that the NAS is publishing these figures is because its new campaign, Careless, aims to highlight how the government's Care Act 2014 fails to adequately recognise the basic needs of adults with autism. This is because the new national threshold for care eligibility will no longer take into account certain factors which previously would have qualified an adult for support, factors that are of particular importance for people with ASD. While previously an autistic person would have been judged to have "substantial need" if "abuse has occurred or will occur", the government wishes to remove this entitlement. Furthermore, if you need support to form personal relationships and make friends, you are no longer eligible under the proposed system. Perhaps most worryingly, those in need of verbal prompting, rather than physical assistance, to undertake daily activities such as washing, dressing, and eating, will no longer be eligible. The report's case studies make for distressing reading. Adrian, 21, was denied support and then raped and later murdered by a person who had befriended him. Nick, who has Asperger's syndrome, was living independently but with regular support from his mother. After she died, he lost touch with family and social services, and was eventually found several years later with severe malnutrition. There was mould growing on his skin. If left alone, my brother could not look after himself. Like many autistic people, my brother went through a phase of requiring prompting for everything. Once, a teenage boyfriend of mine failed to reply to him when he asked for permission to go to the toilet, and he wet himself. The incident taught me several things: that some people are weird around those with disabilities, that disability and our reaction to it distinguishes the strong people from the weak, the kind from the compassionless. I can't put into words how much contempt I feel for this government in the way it is treating disabled people, despite the fact that it is led by a man who has personal experience of the struggle and sorrow disability can bring. But similarly, I can't put into words the admiration I feel for those who passionately believe there is another way. The special needs disco I attended with my brother in honour of his birthday last week was full of these people: carers who receive the smallest of sums for their dedication, care workers on minimum wage, family members, and yes, friends. The experience was tragicomic. My brother didn't want to dance with me, instead opting to pogo around the room like a Tigger the size of a rugby player, but I danced with another boy, one who walked up to me and told me, straight up, that he was lonely. So we did the Macarena to Gangnam Style, and it was wonderful and hilarious, but when the slow song came on and I held my brother's hands, I caught a glimpse of my mother in the corner, clutching her vodka and tonic and crying. David Cameron would probably view such a disco – put on locally by volunteers – as a great example of his "big society". But I imagine many of those present would have some choice words for him about the changes and cuts that his government are making. The transition from childhood to adulthood is a difficult time for those with ASD and their families, and access to social care is already patchy. Removing the current eligibility criteria will make things worse when they are already bad enough. A few months ago it was suggested that my brother be moved to a proposed care home in deepest rural Wales, hundreds of miles from my mum and I and difficult to access even for my dad, who is based in Wales. It was madness to even suggest removing a vulnerable adult from the regular support and supervision of his loving family – social isolation, of course, makes abuse and neglect more likely – and it might still happen. Like many others, we live in fear of the careless. |