Caring for an adult relative with severe learning difficulties is hard at the best of times. You deal with sleepless nights, challenging and sometimes aggressive behaviour, anxiety and loneliness, often behind closed doors and with little support. In times of austerity, however, it is even harder. Life is made all the more distressing when you are living in terror that the small amount of help and respite that you receive from the state may be taken away, leaving you to face the task alone while your loved one is stripped of the structure and routine they desperately need.
When the cuts come, they are experienced as a frightening betrayal. Ask one group of parents in Haringey, who discovered just before Christmas that their council would be implementing sweeping cuts to services for people with severe learning disabilities and autism. The cuts include a reduction of spending on individual care packages and residential placements for vulnerable adults of £10m (around 20% of the budget). Not only will this result in pressure to transfer disabled people into supported living projects run by lowest cost providers, it will also see people with complex needs being transferred “into the community”, perhaps even back to their ageing parents and other carers. Haringey is a particularly deprived London borough, but there is a concern that these measures will set a precedent that will affect people across the country.
Being cared for in the community, we are told, is better than a lifetime in institutions – but what happens when parents cannot cope and emergency care becomes necessary? What happens when you try to get social services on the phone but can’t, because 25% of social work staff have also been cut? What happens when the council is also proposing to close three of the four day centres in the borough dedicated to people with learning disabilities, as Haringey is, thus depriving service users of the routine and sense of community that is central to their wellbeing, not to mention that of their carers? What happens when your autistic son, deprived of a safe environment, lashes out at a member of the public and is taken into custody or worse, retaliated against?
This is what Mary fears will happen to her son James, who is severely autistic, if he is brought back into the community. “The results can be catastrophic,” she tells me. “He gets very, very anxious and almost disturbed. He can attack people because he’s so terrified, and on the occasions that has happened in public it has been very difficult. He has been taken to the police station and put in the cells and it’s horrific for him, because he doesn’t really know what’s going on.”
The day centres provide a safe space for activities and socialising. If they are closed, a person with learning disabilities will most likely be bowling around a shopping centre with a solitary care worker or, if they are anxious, as James is, they’ll have to stay at home, deprived of the support of their peers, which so many neurotypical people take for granted. “They don’t have any right to a collective like you or I do,” says Mary. “They’ll be atomised and isolated.” I know from my experience with my own brother who, like James, is severely autistic, that just because someone might not be able to speak or engage with people in a traditional way, doesn’t mean that human company and interaction is not vital. Why should James be denied that right?
Yet again, austerity impacts the most vulnerable people, and the powers that be remain indifferent. When I met Mary and three other mothers in Haringey, the words on everyone’s lips were: “Where are Labour?” The Labour-run council has been forced to make cuts, and they feel betrayed and desolate.
Paula is the sole elderly carer for her autistic daughter, Marie, who is in her fifties. Paula cries throughout our conversation. Marie was raped by a nurse when she was 19 and is severely traumatised. “She has to change her knickers every hour. ‘They’re dirty,’ she says. I try and get her to stop but she won’t.” Paula had a stroke last year and is worried about what will happen to them both when the day centres are closed. Her music therapy and leisure centre visits have already been cut.
Who will listen to these women’s stories? For it is so often women upon whom the burden of care falls. Labour is not listening, or putting these kind of anecdotes in their conference speeches. The council, with its complex consultation process, doesn’t seem to be listening. Mary and some fellow parents have formed a campaign group called Save Autism Services and have started a petition. But Jill, whose son, Steven, has Down’s syndrome, is not optimistic. She has been fighting the council for years now, but this latest round of cuts is the worst of all. “If he came back from his residential home I don’t know how my husband and I would cope. Steven’s 50, which is more like 70 in Down’s syndrome years. The three of us would be dead.” The council decides what will happen next week.
Vida, whose son Claude is autistic, says she will continue to fight, but that it is exhausting. So many parents give up, she says, because you have to keep phoning and phoning and phoning for help. It reminds me of something a social worker told my mother once: “Phone us on your worst day.” They have a list of excuses, I’m told. “She’s in a meeting,” “she’s out of the office right now.” “They make you beg,” Vida says. “It’s humiliating.”
The government’s austerity measures not only impact upon the most vulnerable but force them to beg for help. Things are hard at the best of times.
Taken from The Guardian Feb 2015