By Sian Bayley, Local Democracy Reporter
Parents of the most vulnerable disabled children feel they have been abandoned during lockdown, a charity says.
School closures have left families struggling to cope, says Annaliese Boucher, founder of SEN Talk, based in Battersea.
There has been a “dramatic increase” in referrals as town halls have been operating under emergency measures.
She said a number of parents have been pushed to breaking point by loneliness and mental health issues.
Annaliese, who has a son with autism, said: “We’ve been dealing with the peer support, having parents on the phone.
“I’ve had parents ring me at 10pm and I’ve answered the phone because they’ve got no-one else.”
Wandsworth began holding Zoom sessions online for children, but it did not support enough children, she said.
There are just under 2,000 children diagnosed with autism in the borough, but Annaliese claims many of these sessions could only accommodate 10 children at once.
She added: “Although they tick those boxes, there were so many slipping through the net and missing those opportunities.
“There was a huge number of people who had nothing. The schools were too busy and unable to do check-ins to see how people were, the kids weren’t accessing the work, or were getting themselves into a state.
“Some kids would have had occupational therapy, speech and language therapy, all of that stuff was not happening.
“This was for three months, and unless they are in Reception, Year 1 or Year 6, they are not at school now, either.
“They focus on the kids who have Education Health Care Plans or are known to social services, but that’s not to say all those kids have been getting support or have been in school.”
Annaliese said the families that SEN Talk helps – which includes a number of children with autism and ADHD – have seen a number of different issues.
She said: “Some children have felt too anxious about going outside for that bit of exercise because there are other people, they’re quite fearful, they’ve picked up stuff from the media or they’ve taken a literal interpretation, particularly some of our kids on the autistic spectrum, and they think ‘if we go out we’re gonna die.’
“So we’ve actually coached quite a few parents getting their children out just for exercise, which is quite vital for children that receive occupational therapy. They need that outside space, they do need to do those stretches.
“Then you’ve got the kids who want to be outside constantly but don’t understand the challenges why they can’t, so you get angry outbursts, difficulties with their siblings, reluctance to do any of the work that’s been set by the schools.”
She added that while online learning platforms are welcome, they are not always accessible for children with learning difficulties.
“Simple things like it’s too busy for the children to understand or it’s not in chunks which would be the usual way of supporting a child with autism or ADHD, you would really break down the information.”
She said many parents felt like they had been “forgotten” during the pandemic.
She said: “When you talk about a family of children with additional needs, particularly autism and ADHD, those are hidden disabilities that people don’t always recognise, so there is always that undercurrent of stress and judgement that comes from other people.
“So you’re always the underdog. To feel like you’re not important enough or your child isn’t important enough for somebody to reach out and offer you something, you feel like you shouldn’t ask, sometimes.
“So you struggle along until you hit crisis point. People are used to being ignored. It has long-term impacts,” she said.
As a local support group, Annaliese said SEN Talk has stepped up with a crisis line and support packages for parents to help them establish a routine with their child throughout the pandemic.
She said they have run 111 children’s sessions since April, including individual mentoring, peer groups and support sessions helping children and young people develop resilience and improve mental health, and have helped more than 55 families.
At last week’s Education and Children’s Services Overview and Scrutiny Committee, councillors thanked teachers, social workers and the voluntary sector for their hard work supporting parents throughout the crisis.
When questioned on the targeted support for special schools and contact with social workers, Wandsworth’s Director for Children’s Services Ana Popovici admitted that “in the early stages we didn’t really get it right for many families” but added that the council had listened to feedback and many improvements had been made.
The report noted that all children known to the Children with Disabilities team had been risk assessed, with those with very complex medical needs and Autism Spectrum Disorder being assessed in partnership with schools and health services and continuing to be supported in the community.
The council also helps to fund a number of voluntary sector groups who support children with additional needs in the borough.
It added that the council has sought to provide packages of support within the home where this has been possible and had recently made respite support available at Falcon Grove for families due to partial closure of Oakdene to protect shielded children.
Likewise, the SEND local offer website had been updated with links to helpful information and resources such as home learning online.
However, the council and health board’s written statement of action following Ofsted and the Care Quality Commission’s inspections of its services for children with special needs and disabilities has been paused because of the pandemic.
The report had highlighted “significant areas of weakness” in the borough’s practice.
Ms Popovici confirmed that a revised version will be submitted to Ofsted by July 3.
Pictured top: Annaliese with her son
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