FEATURE: Group aims to empower parents of children with special educational needs

A support group for parents and carers of children and young people with special educational needs and disabilities (SEND) says it is ‘shocked’ by the number of desperate families who have sought its help since it was set up last year.

Monday, 4th March 2019, 10:20 am
Updated Monday, 4th March 2019, 10:25 am
ImPACT group photo taken at the De La Warr Pavillion in Bexhill. SUS-190214-115542001
ImPACT group photo taken at the De La Warr Pavillion in Bexhill. SUS-190214-115542001

ImPACT, which stands for Inspiring more Parents And Carers Together, was set up by a group of parents in Hastings and Rother, with the aim of providing support to people in East Sussex who were struggling to access appropriate education for their SEND child.

In December, schools watchdog Ofsted delivered a damning indictment of the education of SEND children, warning provision was ‘disjointed and inconsistent’, with thousands missing out on vital support to which they are entitled.

ImPACT aims to help parents going through similar experiences by holding coffee mornings, hosting useful workshops and signposting parents to relevant services.

ImPACT workshop in Bexhill

As Jo Nye, chairman of the organisation, explains: “We are not an advocacy service – it’s about empowering parents to do it themselves.”

The group says it has experienced ‘extremely high’ attendance at its workshops, which cover topics from coping with a child with PDA (pathological demand avoidance) to how to navigate the process of obtaining an EHCP (Education, Health and Care Plan).

Jo said: “We have been repeatedly receiving extremely high attendance at our workshops which of course shows the local need for parent support in this SEND crisis. All four of our last workshops have filled to capacity of 50 and we have planned to repeat these over coming months.

“We have even had professionals, teachers and therapists attend the workshops – presumably the effect of a lack of appropriate services in East Sussex.”

But ImPACT says the problem extends way beyond East Sussex, as demonstrated by the number of parents, carers and professionals from Kent and West Sussex who have travelled to Bexhill for the group’s workshops.

Jo and the ImPACT team decided to set up the group following their own negative experiences trying to access appropriate education for their SEND children.

Jo said: “All of us have experienced difficulties with our child in education.

“We all have SEND children and have trouble accessing appropriate education for our children.

“We did not know how to access the support and knowledge, so we set up this group to help others.”

Jo suspected her son may have autism while he was still in primary school.

However it was not until he moved up to his secondary school in Hastings that his education began to suffer, with bullying and a lack of special needs support causing him to suffer a breakdown.

Jo said: “He was vomiting at school when he got to the stage his anxiety was so severe he could not function, so I removed him from secondary school because he was not receiving any support or acknowledgement that he had sensory needs.

“Then there was the three-year fight of getting provision.”

She added: “Neither he or I wanted to go down the route of a diagnosis. We knew he was autistic, but we had to go down that road in order to access support.

“We got a diagnosis and an EHCP, which took a ridiculous amount of time.

“He was out of school, his mental health suffered. He isolated himself.

“He was subjected to assessment after assessment yet no appropriate 
therapeutic input, which exacerbated his condition.”

As a result, Jo’s son has been out of mainstream education for four years.

Now, after a lengthy battle resulting in a SEND tribunal, aged 16, he is receiving up to 12 hours of tuition at home and as Jo says: “He’s now starting to want to live his life again.”

Jo added: “When they spend their whole primary school time in one classroom to moving all day from room to room in a school of 1,400 kids... it’s absolutely impossible, the environment becomes a trigger.

“He cannot cope with it. Sensory processing goes into overload for him.”

Following her son’s experience, Jo complained to the school – but feels lessons have not been learnt.

She said: “They stated lessons would be learnt from the experience in terms of their bullying policy and SEN policy. And they were not.”

Fellow ImPACT parent Paula Chapman says she felt her son was let down by his Bexhill primary school which failed to follow an agreed educational plan.

Paula, whose son was diagnosed with autism aged three, said: “They would not follow the plan and my son would go into crisis.

“I was constantly up the school. I was up there more than my son was.”

She added: “My son is a very bright child academically, but he was working at reception level in Year 4. So I pulled him out and put him in Glenleigh Park Primary Academy.

“I told them what they were getting and how they needed to deal with it and they followed the plan to the letter.

“There, by the end of Year 5, he had come up.

“By the end of Year 6 he was doing Year 8 work.”

Paula spent four years searching for the right secondary school for her son, eventually settling on Hailsham Community College, which has a specialist autism facility that Paula felt could meet her son’s needs.

However after being told by East Sussex County Council that it could not guarantee a placement for her son at the school, Paula decided to uproot her family from Bexhill to move to Hailsham.

It was a move which paid off as Paula’s son, now aged 14, is thriving in his mainstream school.

She said of HCC: “I cannot fault them. There’s a coproduction going on. We work together as a team.

“With the primary school I always felt like I was fighting them and it was more trying to get them to do what they needed to.”

Both Paula and Jo said they felt there was a lack of information out there when it came to trying to access appropriate education for their children.

Paula said: “As a parent there’s nowhere we can look where it says in plain English this is what is going to happen and how it works and you can change that.”

She added: “It’s only though speaking to other parents who have been on that journey you realise what your rights are.

“It’s about empowering people to let them know you are not alone and to know your rights and that you can change things.”

Earlier this month the Observer reported how parents felt ‘betrayed’ after learning the Local Authority has ordered schools to keep SEND children in mainstream education – even if the school feels it cannot meet the child’s needs.

A leaked bulletin, which was sent to all Local Authority schools and academies across East Sussex, points out that the High Needs Block must fund pupils with special educational needs and disability whether they are placed in state or independent schools.

The bulletin said: “The bottom line is if we are to keep more of schools’ funding in local schools, more pupils with SEND need to be placed in their local school.”

ImPACT said it felt “let down and betrayed” by the Local Authority following the publication of the bulletin.

But sadly it appears the situation in East Sussex is just the tip of the iceberg, according to ImPACT.

Paula says: “We only cover East Sussex, but it is a nationwide problem.

“We are approaching the point where instead of being individual children being failed, most SEND children are being failed.

“There are brick walls put up along every step.”

Jo agreed, saying: “The support is not there.

“I think everyone is looking for support and I think the schools are suffering too.”

And with Ofsted sounding the alarm about appropriate SEND provision, it looks as if more parents and carers will find themselves turning to organisations like ImPACT to help them in their battle to gain appropriate support for SEND children.

But as Jo points out, the SEND community is stronger together, with ImPACT working to tackle the isolation felt by SEND parents.

Jo added: “It’s about parents coming together.

“In the SEND community we can learn from each other.

“It’s very easy to isolate yourself when you are in this situation.

“It’s not until you get out there and release there are so many people in that situation. And you realise you are not alone.

“And it’s so important for parents to know that.”

The group’s workshops take place at The Pelham community hub in Hollier’s Hill, Bexhill.

To find out more about ImPACT, email [email protected] or find the group on Facebook at www.facebook.com/ESehcpexperiences

There are SEND National Crisis Marches taking place all over the country on May 30 – find out more at https://www.facebook.com/SENDNationalCrisis/.