Watch a report by ITV Anglia's Charlie Frost
An Essex mum whose autistic son took his own life and a father who had to take Southend Council to court, to get the right care for his autistic daughter, are urging others to share their struggles.
Ofsted are due to re-visit Southend's special educational needs services next week after a report in 2018 highlighted 'significant weaknesses'.
The watchdog is asking families to fill in a survey ahead of the visit, to get their thoughts on how providers have responded to the criticisms in the 2018 report.
Usually, Ofsted would invite parents to speak to them in person, but because of Covid-19 this is being replaced with the survey.
Julia Hopper runs a campaign group calling for improved support for children with special educational needs, including mental health services.
Called 'Southend SEND the right message', she started the group following the 2018 Ofsted report, when she saw just how many parents reacted to it. It now has 700 members.
Julia's sons have autism and last year her eldest Chris Nota, took his own life.
Father of three Colin Nickless took Southend council to court to get adequate care for his daughter Ellie who has autism and cystic fibrosis.
It followed the family's appointed social worker telling them they were entitled to six day respite, and then them being denied that service.
They won the tribunal, but it cost them £20,000.
Colin told ITV Anglia, "You're not asking for a lot. Six nights of respite a year, for a family that doesn't have sleep is not a lot. To get your hopes up and be told, in their professional opinion they believe this is what you should have, and to have that dashed, I think that is awful."
Everybody should have what the law says they are entitled to, because these disabilities do not go away if the support is denied. They don't just vanish, they worsen and the suffering worsens. How can we justify that today in Britain? How can we hide that?
Following its 2018 report, which highlighted how improvements weren't happening quick enough in Southend's special educational needs (SEND) services, Ofsted ordered the providers to put together a 'written statement of action.'
The watchdog paused its inspections and visits during the pandemic, but is now restarting, beginning with re-visits to services which have had to put together those action statements.
Inspectors will be in Southend on a planned visit between the 5th and 7th of May, to assess the impact of Covid-19 on children with SEN in Southend and to see if things have improved.
Julia and Colin are now urging other parents who have used SEND services in Southend to share their experiences by filling in the Ofsted survey.
Julia said, "Ofsted usually hire a hall and parents can go and physically be the evidence of the impact of these failings. We don't have that opportunity this time round because of Covid. Your answers, your input in the survey will be absolutely critical if you want to see things improve."
In a joint statement, the main providers of Southend’s special educational needs services, Southend-on-Sea Borough Council, Southend Clinical Commissioning Group and The Essex University Partnership Trust, said:
In a joint statement, Southend council, the CCG and EPUT said:
"In 2018 Ofsted and the CQC inspected the Local Area Special Education Needs and Disabilities (SEND) offer across Southend, delivered in partnership between the Local Authority, CCG and other partners. The outcome in 2018, was that while improvements were ongoing, these were not happening quickly enough and so we were asked to provide a joint Written Statement of Action in response.
"Ofsted and Care Quality Commission (CQC) announced their intention to start a phased return to inspections from April 2021, starting with re-visits to areas with a Written Statement of Action in place. That is why Ofsted and CQC are returning to Southend-on-Sea for a scheduled visit from 5 - 7 May 2021 to assess progress against that Written Statement of Action and what impact the pandemic has had on children and young people with SEND in Southend.
"A survey to parents and carers who use SEND services has been sent and those comments will inform part of the findings.
"We continue to work hard to make improvements and await the outcome of this re-visit and the subsequent report."