PARENTS in east Cheshire are spending thousands of pounds on making sure their autistic children get the support they need – because the council is struggling to help.

In a recent inspection of provision for youngsters with special educational needs or disabilities (SEND), Ofsted and the Care Quality Commission (CQC) found ‘serious weaknesses’ in the timeliness and quality of Cheshire East Council’s education, health and care (EHC) plans – meaning parents face long waiting times before finding out what help their youngsters are entitled to.

Now, Wilmslow mums Lauren Killilea, Sarah Maughfling and Saskia Howarth are speaking out about how families like theirs are ‘being cast adrift’ while they face a two-year wait for an autism assessment for their children.

They want to see a change of approach – starting with an apology from the council and Cllr Jos Saunders, cabinet member for children and families, who last month said the inspection’s findings meant it was ‘reassuring to know that we are very much on the right path’.

Lauren, whose nine-year-old son has autism, said: “If that is her true view of that report then I question whether she is the right person to have that role. I don’t think she is fit to do the job.

“That response was dismissive, arrogant and intellectually dishonest. I was incredulous when I read that response to the report.”

Saskia, whose eight-year-old daughter has autism, said: “It shows they have no idea of the damage that their failings do to these children and their families.

“If they had to live with it they would do something, because it’s a very difficult experience. A very challenging life, not just for the child themselves but for everybody in the family.”

In the report, Ofsted and the CQC said the review of EHC plans was not being completed within expected timescales.

Lauren and Sarah were told they would face a two-year wait for an EHC plan to be completed for their child.

“Certainly in my situation we just couldn’t wait for this two-year diagnosis because things were at breaking point with my son,” said Sarah, whose 13-year-old son has autism.

“We probably spent nearly £5,000 on assessments for him out of our own money and it’s money we can’t afford to spend. Because of his situation I’m not working – and that’s not unusual.”

Lauren, who has coughed up £8,000 to fund private assessments, added: “Those of us here are fortunate to be in the position where it is a struggle financially but we can afford it.

“But there are many other families who are not. They should get the support they need in a timely manner, it shouldn’t be just middle-class families, but sadly that’s the way it is in Cheshire East.”

The inspectors noted that some children entered the social care system ‘due to delays in identification of needs’, and the three Wilmslow mums said they were made aware of parents having their autistic child taken into care when Ofsted spoke to families from the borough about their experience.

Lauren added that some parents have been told their children are not eligible for an assessment because they are performing well academically, while others are forced to go to a tribunal to fight for the provision their children need.

A lack of sensory occupational therapy across the borough was also slammed by inspectors, and Sarah says she was even told there was ‘no evidence to say that it worked’ when fighting for her son to be given access to it.

The inspectors also criticised the quality of the EHC plans, with some suggesting young people had no health or social care needs, despite having ‘significant needs’.

Sarah said: “You get to a point where you think ‘great I’ve got the plan’, and then you can be guaranteed that it will be totally inadequate.

“And then you’ve got to be responsible for going through that with a fine-tooth comb and making sure that everything you need is in there.”

Lauren added: “If a parent has any concerns about their child’s schooling particularly if they have got SEND do not just accept what the local authority says.

“Question it, and look at the legislation, look at the code of practice, because you will often find that what they are saying is just not true.”

CEC is now required to respond to the report by outlining how it will address any failings in a letter to Ofsted.

Cllr Saunders said: “We recognise the significant challenges faced by families of children with SEND. We are committed to working closely with these young people and their parents and carers to better understand their experiences and how these can be improved.

Wilmslow Guardian:

Cllr Jos Saunders

“Whilst the 0 to 25 SEND partnership already had improvement plans in place across education, health and care services, we are not complacent and there is more to do, particularly around ensuring that education health and care plans are done in a timely way to meet the needs of children and young people.

“We are also working closely with our health colleagues to ensure that we improve our support for children and young people with autism.

“Cheshire East Parent Carer Forum is an equal member of the partnership.  The aim of the forum is to enable parents and carers to share their knowledge of what works and what doesn’t work so well, and to help service providers and commissioners focus their efforts on effective, high quality support.

“We would encourage these parents to join this forum so that we can work together to further improve outcomes for all children and young people with SEND across the borough.”

Sarah, Saskia and Lauren met on Facebook in the Wilmslow Special Needs group, which was set up by Saskia and now has 69 members.

It is a space for parents to share their stories and concerns, and offer support based on their own experiences.

“Everything that is discussed in the group stays in the group,” Saskia added.

“We’ve started to meet once a month and it is wonderful to be able to relax and talk to one another.”

Parents, carers or those with autism can also find support from the Space 4 Autism charity, based in Macclesfield.