THE Cookstown mother of an autistic child has said her family is devastated after vital funding was withdrawn for a youth club specifically for children with autism.
Cara McElwee’s son Luke, who also suffers from Sensory Processing Disorder, learning difficulties and Global Developmental Delay, needs round the clock care.
Six-year-old Luke was attending a Saturday’s Kids club, run by Barnardos in Magherafelt, for five hours every month which provided some much needed respite for parents.
However, the Department of Health which finances the youth group informed staff at Barnardos last year they were to lose the vital funding which they rely on.
The charity had enough money to continue until March of this year and the group hoped the funding would be reinstated, but their worst fears were confirmed when they were told the youth club would be coming to an end.
Cara said she has been left angered and confused by the actions of the Department as an Autism Bill was recently passed at Stormont which means that children with the disability can’t be discriminated against.
The mother-of-two believes the move will have a long term affect on Luke as the club played such a big part in his development and well-being.
“It was awful to hear they lost the funding because that Youth Club is the only group Luke can go to because he has autism he needs the right care and trained staff to look after him,” she told the Mid.
“He can’t go to Scouts, drama clubs or football and this is the only type of group in the area that Luke can attend.
“I’m cross because the Autism Bill that was passed a few weeks ago says that autistic children have to be treated the same as every other child, but yet a Stormont Department has stopped money coming from the Children’s Fund to keep the club open.
“It may be only five hours a month but it’s a chance to spend time with our daughter Teri and do things with her and take her places where we couldn’t bring Luke.
“Those five hours feel like five days to us and it’s that break we need for ourselves and our daughter so we can do things as a family.
“We can’t send him away to any club as we need the specially trained staff to look
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after his needs, the staff there are so well organised and understand him and his needs. I feel like I can leave him with them and not worry about what’s going to happen to him. Other parents are there and they understand what you’re through as they’re on the same boat.”
Around 70 families throughout Mid Ulster have been stripped of this service which costs £70,000 annually to run. That leaves 70 disabled children with no youth club to attend and their parents are left struggling to find a few hours respite.
Autism is a lifelong disability which affects the social and communication centre of the brain, it also affects the way an individual relates to people, situations and the immediate environment.
Cara describes Luke as a happy, friendly and affectionate boy who loves hugs but finds it difficult to communicate with people.
“This group was so much more than a youth club to him. It’s so important that he socialises with other children whether they’re autistic or not. He wont mix with other children apart from those who he attends school with at Sperrinview Special School in Dungannon.
“He needs social motivation and everything is done for him, because of his development problems he is very slow and has no self help skills. He can’t feed himself, he’s still in nappies and can’t speak. Really he’s like a 6-year-old baby. When we brought him to the club they knew exactly how to look after him and I wasn’t worried leaving him there.
“Everyone at the youth club was so gutted because we all knew it was in the pipeline, but everyone thought the money would come form somewhere or it would be replaced by something else or the Trust would supply some sort of support. We all wrote to our local MLA’s in Mid Ulster but unfortunately we didn’t hear back from any of them.
“We all signed a petition to have the money reinstated but we haven’t heard anything yet. The government has also withdrawn the music therapy from Luke’s school. He doesn’t like loud noises and the class helped ease him into different noisy situations. It seems they (Department of Health) are slowly chipping away at vital services.
“It’s sad for us as a family as we are always having to watch Luke constantly because of his sensory problems. It’s hard for Teri now to understand that she won’t have those few hours to spend with her mummy and daddy Terry. She loves spending time with Luke too but it’s just having a big affect on us too.
“It makes me mad that money was spent on stupid things by the government which could easily pay for Luke’s group.
“We all went to the Autism World Awareness Day being held in Stormont at the weekend which was a good day for raising awareness, but it begs the questions - how are they going to help our children?”
When the MID contacted the Department of Health, a spokesperson stated: “The centrally-funded Executive Children’s Fund came to an end in March 2008.
“At that time it was agreed that funding would continue to be provided from within the DHSSP budget for a further three years, to March 2011, to fund those projects that had previously been assisted by the Children’s Fund’s and which were deemed to be pursuing activity that contributed to the aims and objectives of DHSSPS.
“Projects were advised at that time that, over the period of the funding extension, they would be expected to move to a position of self sustainability or find an alternative source of funding.
“In July last year they were advised that it would be prudent to plan on the basis that funding would not be available beyond March 2011.
“In light of the constrained financial position facing the Department in 2011-12 it has not been possible to continue to provide funding to those projects. This includes a number of projects under Barnardos.”