Grace and Lara's story

“At one point, I was driving 400 miles a week just to get my children to school and therapy sessions.”

When her daughter was diagnosed with autism, Grace’s world turned upside down. “It was a massive shock. Almost overnight, she regressed. We had CT scans, MRI scans, an EEG… you name it, before we got the diagnosis. Then it was like: what now? Where do we go for help?”

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And so starts Grace’s long and on-going battle to access good-quality, local services for her daughter, Lara, now six. Even getting a statement - the legal document which outlines Lara’s special educational needs - was problematic. Despite backing from professionals, it took months of fighting and form-filling before Grace had the statement in her hands.

At the time, Lara attended a pre-school for children with autism, a 30-mile round trip from home and the nearest specialist provision. Each day, Grace would bundle Lara and her young brother into the car for the 40-minute drive to school, drop off Lara, wait two hours then pick her up. “It was chaos, as you can imagine.”

When offered school transport for her daughter, Grace was happy to accept. But there were problems from the start. The car reeked of cigarette smoke which clung to her daughter’s hair and clothes. Grace believes the smoky atmosphere led to Lara - who had never had breathing problems before - being hospitalised with an asthma attack.

On week two, Grace discovered the company was failing to put Lara in a car seat. “I was furious. The council wanted to investigate by doing a spot check with Lara in the car. I withdrew her but was told I was putting her entitlement at risk. I said: ‘That’s fine. I’d rather have a safe child.’”

Four hours in the car every day

Finding a primary school was the next battle. The only local school for autistic children was oversubscribed. “The council tried to push Lara into mainstream education,” says Grace. “Finally, after I threatened tribunal, they agreed funding for a specialist independent school. It was very stressful.”

Fortunately, a place became available at a specialist state school and Lara is now settled there. But it is still a 40-mile round trip from home. Lara also has therapy - another 40-mile round trip, three times a week. Luca, her brother, who also needs specialist help, has a 30-mile round trip to pre-school three times a week. “At times, I was driving almost 400 miles a week just to get my kids to school and therapy,” says Grace. “That meant up to four hours in the car a day. I had no life at all.”

Desperate for respite, Grace turned back to the transportation service. But the problems continued. “Late pick-ups, not securing Lara’s harness properly…” She ticks the problems off on her fingers. “She’s had three drivers and five escorts in eight months. I remember the day two men we’d never met before turned up on the doorstep to take her to school. There was no way I was letting my daughter go with them. What parent would?”

Today, Grace says she’s angry and dissatisfied with the support services she’s received. “No child likes disruption but, to a child with autism, consistency is vital. The transport service has been a nightmare. The council is dealing with vulnerable children, they should be protecting them,” she comments.

“I’m exhausted; and my children are missing out on quality family time. I think it’s about time the public sector invested in providing good-quality local services for everyone, especially disabled children.”

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