'What it's like bringing up our three autistic boys when help has been cut'
PUBLISHED: 07:39 26 November 2018 | UPDATED: 08:15 26 November 2018
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A mum and dad from Norwich's Mile Cross reveal how service cuts have left them struggling to cope with their autistic boys.
We have four children, John, 17, Kevin, 14, Josh, 12, and David, 10*. Three of them have autism.
We used to have a good social worker and the boys would go to respite every week at Aylsham Road, Norwich.
But last September we lost all our support and since then we’ve struggled.
We didn’t know John was on the autistic spectrum until quite late. People his age picked up that he was not the same as them and they took advantage of that.
He was kicked out of his high school and went to another one but they couldn’t cope with his outbursts either.
He was sent to a short stay school and it was there an educational psychologist recommended that he should go to Acorn Park as a day pupil - an autism school in Banham.
That was good but when he was home at weekends and school holidays he still couldn’t tolerate the noise from his brothers, and that was when Acorn contacted social services.
He eventually went to Acorn Park on a residential placement for a year.
He got his GCSEs and he was fine there until he left this year. The council would not fund his placement any more and he wanted to go to college, but we wanted him to stay at Acorn Park part time.
When he came home he lasted about a week until things started escalating again.
We asked for him to go to supported living instead.
We were told by his social worker it would be 24/7 and that there would be strict rules and boundaries for him. That is what he needs.
Two weeks ago he moved into the supported living accommodation, but it is a mess.
We were really shocked when we went there. The bathroom is a mess, the cooker doesn’t work, there is broken furniture, damp on the ceiling, cracks in the wall and a ripped sofa.
He gets £57-a-week from the council but has been told he needs to pay £25 a week rent. He is getting really stressed.
John is only getting seven hours support a week and he has stopped going to college.
Kevin was born premature and I had severe pre-eclampsia with the three who have autism.
He has just started at Acorn Park after failing to cope in mainstream school.
We had no end of reports from education psychiatrists and speech therapists and they all said Kevin shouldn’t have been in mainstream.
He started struggling in his last year at primary.
We had to borrow money from friends and family to pay for a private educational psychiatrist to get him support.
Our social worker helped with all the boys as they were all classed as Section 17 - children in need - but all the social services support was withdrawn last year.
We used to have a family practitioner who came every Friday and the boys loved it.
The boys would also go to Aylsham Road for respite one or two times a week.
We could recharge our batteries and be ready to support the boys when they came home.
When the support was cut we complained to Norfolk County Council and wrote to head of children’s services Sara Tough.
We had a meeting at County Hall in March about our complaint. They agreed to do a new assessment.
It was meant to take 45 days but it took 80 days. They decided after that to give us a service called New Directions, but they were not autism trained.
New Directions told us that they felt they were not the right service for us, but social services said that we failed to engage with them, but that was not the case.
We have been saying since September last year we need the Aylsham Road respite and the family practitioner back.
When the service stopped the boys were heartbroken and thought it was something they had done wrong.
The family practitioner was a huge part of their life; Kevin particularly is very isolated in terms of friends.
He has always struggled to communicate; he used to get really angry and hyper.
He loves it at Acorn Park but we worry they will take it away from him.
Josh does not have autism and goes to a young carers’ group, but was told after the first session the group is going to close in March next year.
He finds it hard as all of our time has been spent on the other boys. It feels like he is the forgotten child and he gets no peace. The boys are constantly badgering him.
David has poor motor skills and continence problems, along with autism.
He has to wear a nappy at bedtime.
We started an application for David to get an Education Health and Care Plan - a document which sets out support for children with special needs - and his primary school submitted their part of the application.
But the council rejected it. They said he didn’t have complex needs.
He was once so upset with the situation in the house that he was walking around carrying a knife as he was so scared of John.
It was such a shock. We don’t keep knives out now.
*names have been changed to protect the identity of the boys.
•‘They’re not following own rules’
Friend Jane Wisbey has been helping the family after experiencing a similar battle to get support for her autistic daughter.
She said: “Nobody is listening to the family and children.
“The council has spent thousands of pounds on a placement for John at Acorn Park and now he is left with little support in a shabby flat at real and immediate risk of entering the criminal justice system.
“The council is not going by its own guidelines in this case. They state children’s services should listen to family members, be child centred and focused on outcomes for children. That has not happened here.”
Mrs Wisbey has taken up the case with Andy Goff, assistant director at children’s services.
He told her in early October someone from children’s services would contact the family. That finally happened last week, but no appointment had been arranged as we went to press.
•What the council says
A Norfolk County Council spokesman said the council believed it had given the right support to the family.
“We know that caring for children with autism can bring challenges for some families and we offer extra help and support,” they said.
“This can include providing respite at certain times, where that is in the best interests of the children and in some cases can include supporting older children to become independent as they grow up.
“It wouldn’t be appropriate for us to comment on the specific needs of individual children publicly.
“However, in this case we strongly believe we have provided the right support and have always made decisions based on what is right for the children.
“We support and work with Norfolk’s schools to provide the best education for all of their children, including those with special educational needs.”
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