Week Two of #7DaysofAction for ATUs has come and gone, and there seems to be very little good news. When I wrote the end-of-week summary piece for Week One, back in April, I was quite optimistic that Education, Health and Care Plans would in future supply support to ensure that young people would be diverted away from ATUs before they ever got near one. However, EHCPs do not seem at all to be working as envisaged, being frequently late in arriving and often inadequate when they do. Then this week, I heard a story to make anybody despair.
Petra is a 20-something mum-of-three. She has an eight-year-old son, a six-year-old daughter, and a five-month-old baby, and the two older children are both struggling in school.
Petra herself had a mixed experience of school. She loved learning, but she had trouble writing things down in the way teachers like them arranged. At secondary school, she especially enjoyed history and English, but again, her written work meant she ended up in bottom sets for all subjects. Most of her fellow-pupils in these groups were noisy and disruptive. Petra, a quiet and unassuming person, could neither quell their boisterousness nor study well in the midst of it. Although she sat a full sweep of GCSE’s, she was ungraded in every single paper and left school without a qualification to her name.
When her son was born, he was found to have a heart defect. His sister was hospitalised with repeated infections as a baby, and was very slow to walk. By the time the little girl was four, she was still in nappies and didn’t speak a word. And by then, her big brother was behaving in a way that was hard to manage. He slept very little: four or five hours a night; and when he woke up, he woke the whole house up. Neither child appeared to have any concept of danger, so Petra needed to have eyes in the back of her head. That’s difficult when you are permanently exhausted.
Social services became involved. Huge meetings were convened in Petra’s living-room, with every chair and all of the floor occupied by strangers. Petra and her partner were sent on parenting courses and workers dropped in to watch how they managed the children. Petra felt criticised and scrutinised. She did everything that she was told to. But it made no difference to how the children acted.
Eventually, Petra’s doctor arranged for her daughter to have genetic testing. The tests came back showing her daughter had a genetic difference. The rest of the family were tested. Petra’s son had the same difference – and so did she.
Petra’s own Mum says she spent Petra’s entire childhood voicing her worries about her sweet, slowly-developing daughter, in vain. She was told, repeatedly, that she was an over-anxious mother. Now, way too late for help, Petra was finally diagnosed with a learning disability arising from her genetic condition. The Adult Speech Therapy service at last assessed Petra’s communication and wrote a report explaining her difficulties, and what services should do to help her understand. Petra took the report to various departments, trying to find someone to listen to her concerns about her children. No-one in the Local Authority seemed to hear.
Petra may not have passed any exams, but she knows how to use IT and social media. Via the internet, she found a support group for people with the condition that she and her children have. She got information, advice and – a new experience for her – found friends. With support from her internet friends, and a great deal of effort, she managed to get a Statement of Special Educational Needs for her daughter. But there were continuing problems. Her daughter’s behaviour was increasingly hard to understand and manage; she insisted on routines and had great difficulty moving from one activity to another. If anything was not to her liking, she would kick off into epic tantrums that involved constant screaming, destruction of anything breakable in the vicinity, and physical attacks, for hours on end. Her daughter’s paediatrician ascribes all this to her genetic condition, but a locum paediatrician described it as autistic behaviour. Two years later, Petra is still trying to access a formal autism evaluation for her girl, while enduring physical assaults from her daughter that are becoming more serious as the child grows bigger and stronger.
In the meantime her son has been falling further and further behind his classmates. Now in Year 4, he cannot even manage Reception-level work. He doesn’t understand how to play with other children in a give-and-take way. He has no friends and Petra worries he will be picked on and bullied for his oddities. In July 2014, she wrote to ask for a Statement for him, but her Local Authority told her they were not doing Statements any more because EHCPs were starting that September. Petra asked, through the school, for him to be given an EHCP assessment. He has not yet been assessed for an EHCP. He still has no concept of danger, and is over-friendly to strangers, to his mother’s considerable alarm. He sleeps no more than he ever did and whiles away the wee small hours, either with tormenting the rest of his family, or with destroying his bedroom: disembowelling pillows and mattresses, picking the paper off the wall and dismantling his toys and furniture.
With all this to contend with, Petra and her partner did not intend to have any more children. They did not realise baby number three was on the way until relatively late on in the pregnancy, and then they were in a horrible quandary. It was too late for a medical or surgical termination of the pregnancy. The option they were told about was a ‘partial-birth’ abortion, which would only be offered if the baby was disabled. This baby would have the same 50/50 chance of inheriting the same condition as the elder two, but Petra decided she couldn’t face giving birth to a dead baby. In the end she and her partner didn’t bother with an amniocentesis, held their breaths and hoped.
Petra asked for genetic testing for the baby immediately after birth. The hospital doctor first tried to dissuade her, then simply failed to send the blood samples off for processing. Petra, in a near-zombie state from caring for a non-sleeping newborn alongside her two non-sleeping children while recovering from a C-section, had to ask, cajole, insist, and finally take the baby for a a second, wholly unnecessary blood draw. It confirmed what she already feared from observing her infant: the baby also had the genetic condition.
Petra asked for help. Her partner, as exhausted as she, was suffering seizures brought on by tiredness, her wider family were for various occupational and geographic reasons unable to offer much practical support, and the summer holidays were looming: six weeks without even the respite afforded by six hours’ school, five days a week. More people came and sat on Petra’s sofa and took notes. And then… nothing. No holiday clubs. No respite care. No suggestion of what support might be available or forthcoming. Petra limped through the summer holidays, feeling increasingly hopeless and desperate. Things came to a head of sorts at the first weekend of the autumn term, when the children, probably stressed after a week of lessons, ran amok. Petra phoned the emergency social work team and an adult social worker came out to see her the following week. A friend from her internet group sat in on the meeting and it was agreed that Petra needed a multi-disciplinary team to help her co-ordinate the many health, education and social care professionals involved. She needed help to care for the children and get them out to school on time, and above all, she needed respite care for the children so that she herself could get some rest. But organising those things would be the responsibility, not of the adult social work team, but of children’s services.
So yet again, nothing happened. Half-term arrived, and once more, there was nothing for Petra. She was offered a meeting with an organisation that runs parenting skills courses and ‘child behaviour support’ programmes, but when she attended, was told it was an obviously inappropriate referral as they had nothing relevant to offer. No practical help. No care for the children. No rest for herself.
I have to admit I am baffled. How can a household containing four disabled people, including three young children with disabilities, and a fifth person with a serious health condition, get no social care at all? Why, when the Authority has been ‘involved’ with the family for years, does Petra have to keep going on the same weary round, knocking at the same closed doors?
Why is Petra, as a learning-disabled adult, not entitled under the Care Act to support that will promote her well-being in respect of her personal dignity, her physical and mental health and emotional well-being, and her domestic, family and personal relationships? Why has she never been offered advocacy services? Waking night care? Weekend and holiday respite? Short breaks?
Why are the children, all of whom have a genetic condition that in nearly every case causes learning disabilities alongside communication and health problems, not all acknowledged to have Special Educational Needs as defined by Section 20 of the Children and Families Act? Why has no-one from the Authority supported Petra to get EHCP provision for her son? Why is the genetics service refusing to make any referrals for the baby before December?
Petra, according to her internet friends, is at the end of a stretched-to-the-extreme and frayed-to-snapping-point tether. She is trying very hard to do it right, but she can’t manage some of the things that have been suggested, like applying for Direct Payments. Last weekend, they say, she was talking about asking to have the older children taken into care. Her friends persuaded her to call Social Services’ out-of-hours line again, and once again she got no immediate help… but the following day she got a call from her GP, saying that he had been contacted by the service and told she was unwell and mentally unstable. Petra, furious, shamed and frightened, assured him that it was ‘just because she had been a bit tired’, got off the phone and back online and swore that was the last time she would ever, ever ask for help.
Unless someone can suggest a way to sort this out fast and effectively, I’ve a nasty feeling that the next time her Authority’s Social Services department hears from Petra, will be when she shows up with her older children, their suitcases and a speech along the lines of, “You’ve been telling me for years that I should do better and don’t need help. Well, I can’t and I do. Since you’re so clever, it’s your turn to see how you get on. Let me know how it goes.”
Who could blame her? I am generally a fit and healthy person; I have just one disabled child, who has high medical needs and learning disabilities but is mostly well-behaved; and in spite of all that, some days I am on my knees. I can’t imagine looking after three children with disabilities, two of whom are bouncing off the walls 19 hours a day, never mind doing it all as a person with a disability myself.
And then what? In ten years’ time, will both the children be in, or on their way to, ATUs? I wouldn’t bet against it. Yet I would equally put money on it being avoidable, if just a little support were put in to keep the strains on this family at a manageable level.
That no help is forthcoming is chokingly, nauseatingly shameful.