Ed urged other parents in a similar position to know their rights and the legal obligations authorities have around Education Health and Care (EHC) Plans.
A Cambridgeshire dad has said parents face a “battle” with authorities to try and get the right support children with special educational needs and disabilities (SEND) require. Ed, a father of three, said he and his wife Jo, are currently trying to make sure their youngest son Austin is able to get a school place in September that can meet his “complex needs”.
However, he said they have faced delays hearing back from officials and learnt that legally required reviews of their son’s support plan had not been carried out by Cambridgeshire County Council as required. The county council said there are over 8,000 children requiring extra support in the county, and that it is “implementing improvements”.
Ed explained that his son Austin was born prematurely at 25 weeks in December 2021. He said they spent 10 months in the hospital with Austin after he was born, five months of which were in intensive care. Ed said the care Austin received was “unbelievable” and that staff there saved his life “on multiple occasions”.
However, Ed explained that Austin had a major infection while in hospital and lost 85 per cent of his digestive system as a result. He said: “By the time we brought him home in September 2022 he had a stoma and he also was dependent, and still is dependent, on something called TPN (Total Parenteral Nutrition), which is an intravenous nutrition.
“He does eat, but he relies on that everyday to keep him thriving. Alongside that due to his time in hospital, early birth, and other factors associated with medications and infections, he has developmental delay. He has been diagnosed with autism, and also has mobility issues and a form of cerebral palsy. He has got complex medical needs and needs help.”
Ed said Austin is non-verbal and needs a frame to help him walk and that he “needs help with pretty much everything apart from play”. Ed explained that before Austin could start nursery he needed an Education, Health and Care (EHC) Plan.
EHC Plans set out what extra support children with SEND need and should get. The county council is responsible for carrying out assessments for EHC Plans for children in Cambridgeshire and making sure they are fulfilled and reviewed at the required times.
Ed said they were to get Austin an EHC Plan before he started nursery, although he explained that this was delayed due to Austin being hospitalised. He said: “Between the council and us it took a year to get him into nursery. He was in hospital for maybe about 10 days, so the majority was the paperwork and gathering all the information.
“It is not just on the medical side of things, it is community care, child psychology, we had multiple visits to multiple professionals to get that. We were lucky he was so young and we managed to get all those opinions nice and early. Now we are getting to the stage where he is enjoying nursery, but he needs to be starting school.”
Ed said they became concerned about making sure Austin got a school place somewhere that would be able to meet his needs. He said they have been advised by a paediatrician that this could likely need to be a special school rather than a mainstream school.
However, Ed said he and his wife faced delays hearing back from the county council about this, and then found out legally required six monthly reviews of Austin’s EHC Plan should have taken place, but had not.
He said: “We were not getting anywhere, we were waiting weeks for replies to emails. I visited a legal assistance website which is specifically for parents of children with EHC Plans. As a result of that we were made aware it was not a case of the council being late, but actually breaking the law because they were not doing the [reviews].
“Since then we have engaged a proper solicitor to make sure things get done, because if we go through normal complaints procedure with the council it will be too late before any outcome shows up. We have got to call them out on the fact that they have basically dropped it.
“I was made aware they are under huge strain, and I completely appreciate that all health and education services are under massive strain, but from the point of view of Austin, we needed things to happen.”
Ed said an initial review meeting has now taken place with Austin’s nursery, but said this only happened after he wrote a letter to the director of child services at the county council highlighting that no reviews of Austin’s EHC Plan have been done in nearly two years since it was first issued.
Ed said both he and his wife just want to make sure their son can go to a school that can meet his needs, enabling him to have “the same opportunities of other children”.
‘Parents of children with EHC Plans need to know their rights’
Ed said it is not an easy process trying to get an EHC Plan for a child describing the amount of admin as “ridiculous”, adding that once a plan is issued the “battle” is not over.
He urged other parents in a similar position to make sure they know their rights and what legal deadlines authorities are required to meet when it comes to EHC Plans. He said: “[Councils] will ignore the law if you do not stay on top of it and remind them of their legal obligations.
“Cambridgeshire County Council are particularly bad at that, because they do not have resources, they do not have personnel, but that is not our problem, that is down to central government to make sure they are equipped, and to make sure the system fits the law rather than changing the law so the system does not have to meet it, which is what the education secretary is talking about doing.
“As parents we have to become admin experts, but also legal experts. I have been very lucky that I found this resource, IPSEA, which is an online resource, it is a charity offering legal help for parents and it has been absolutely invaluable.
“I think parents need to be aware of the legal obligations of the council and make sure that they chase things up and do not do what we did initially, which was send an email and hope you get a reply, then two months down the line to find nothing happened and you have got a lot more chasing to do.
“It does take time, it takes a lot of admin, but there are resources out there. I think unfortunately you have to shout really loud and unfortunately things will have to be quite adversarial with the council, because they are supposed to be there to help, but ultimately it turns into a battle.”
Cambridgeshire County Council says it is ‘implementing improvements’
Councillor Edna Murphy, chair of the county council’s children and young people committee, said the county council is implementing improvements, including taking on more staff. She said: “Improving the lives of children with SEND and of their families is vitally important.
“We currently support more than 8,000 children and young people with EHC Plans in Cambridgeshire. The demand for our SEND services continues to increase at an unprecedented rate, like in other parts of the country. We’re working hard to meet the needs of these young people and their families, but we know there is much more to do.
“We’re implementing improvements following the inspection of our local area partnership for SEND earlier this year and have committed to investing a further £780,000 to increase staffing and improve the time taken to complete EHC Plans.”
Cllr Murphy added that a “complete overhaul of the SEND system” is needed. She said: “I challenge the government to bring their proposals forward now as the need is truly urgent for so many families and children in this country. It is very concerning that the government has delayed, until 2026, their long-awaited proposals.
“These national reforms are needed now to address the underlying policy and regulatory issues that impact SEND services here in Cambridgeshire and elsewhere. We need action now, including decent funding, to bring about a more inclusive approach that families need.”
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