By day: mum of an autistic tot. By night: mum of an autistic tot.
Bonkers doesn’t begin to describe things here in Wales at the moment. Our local authority is looking to slash millions off its annual budget and, you guessed it, disabled people are going to suffer the most should their plans go through. In recent weeks it had come to my attention that respite care had been withdrawn from some families with little warning and, in some instances, no decent explanation I know how lucky we are in the UK to have a free health service and services like respite. We could really be an example to other nations however, it seems that politicians want to erode services that people have come to rely on to a bare minimum. In response, a friend and I have set up network to connect carers to lobby and advocate on behalf of their families. More details of what’s going on can be found in this post, here. This time around, I want to share an individual’s story of what happens when this valuable service is withdrawn. My thanks to Dawn, Mike, Jade and, of course, Ryan for letting me share their story.
Trigger warning – abandonment.
Dawn and Mike have two children: a daughter, Jade, who is almost 17 and a son, fourteen year old Ryan. Ryan is intensely autistic and has severe learning disabilities. He attends a special school for children with complex needs. Like many a fourteen year old, Ryan is loves life and loves a good chicken curry. He enjoys a good, old fashioned run around too. However, Ryan has many needs a typical fourteen year old does not. He works hard at school and at home and, with support, he has come on leaps and bounds in many areas including personal care. Mum and Dad are immensely proud of every one of Ryan’s achievements.
The family had, until January 2013, received six hours of after school respite broken into two three hour sessions. This service was provided by the organisation, Breakthrough. Ryan is a boisterous young man and required two to one care for each session. Dawn has described these sessions as “meaning the world” to her family. It gave mum and dad valuable time to devote to their daughter, Jade, to help her study for exams, and an opportunity for Ryan to burn off some of his energy. Dawn isn’t in the best of health. She has arthritis of the spine and so is unable to take Ryan to the park to run around as she simply cannot keep up with him and his understanding of both danger and language are extremely limited. Ryan was excited about returning to school after the Christmas holidays and also looked forward to his respite sessions. On Monday the 7th January, Ryan went to school with his bag packed ready to go to his respite session at 3.15pm. That afternoon, after school had finished, Ryan’s mum received a phone call from a member of school admin staff informing her that her son had not been collected and was still at school. Ryan’s dad was called to pick the boy up.
Before Christmas, Breakthrough had informed social services’ child health and disability department (CHAD) that respite would be coming to an end for Ryan in the new year, however, that information had not been passed on to Ryan’s parents. Neither had the family had their needs re-assessed and no alternative arrangements had been put in place before this invaluable support was withdrawn. It is becoming apparent that there are no plans to reinstate respite for Ryan and his family in any form. When Ryan’s parents asked why respite had been withdrawn, they were told by a representative of Breakthrough that it was due to staffing issues. Mike and Dawn doubt the veracity of that statement: Mike, on the very afternoon he had to go to pick up a stranded, confused and upset Ryan from school, saw his son’s Breakthrough workers caring for another child. Ryan’s sessions, it seems, have simply been reallocated.
When Dawn asked her social worker why Ryan’s respite had been withdrawn the social worker was at a loss to answer. “I don’t know how many children Breakthrough take out,” Dawn told me, “but, say, for example, it’s 15. So why did they single out Ryan? Why did they just give his session away and why didn’t anyone tell us?”
Councillor for Ely, Russell Goodway, has been contacted by the CWTCh Network on behalf of Ryan’s family. He has indicated that he will be contacting Dawn but has yet to do so. In a meeting with Councillor Richard Cook, cabinet member with the portfolio for Social Care, Health & Wellbeing – Childrens’ Services and The Senior Manager (Intake and Assessment) at Cardiff County Council Ryan’s case was dismissed out of hand as being “Breakthrough’s fault.” It was also implied that the story as relayed to us was unreliable. So here’s the question, Cllr Cook and He Who Must Not Be Named: having already lost their respite why would Dawn and Mike construct such a tale? They have nothing to lose.