Special Report by Felix Nobes
PARENTS of children with special needs in Solihull are ‘fighting a battle’ every day to have their voices heard.
They complain there is a ‘lack of provision’ for kids with sometimes complex conditions.
The Observer spoke with parents concerned about ‘a severe lack of provision, understanding and support’ for children with Special Education Needs and Disabilities (SEND).
Outraged parents contacted us, and criticised the Care Quality Commission (CQC)and Ofsted report published last month into SEND services in Solihull.
They say the findings barely scratch the surface of the daily struggle for parents to get SEN support for their children.
As outlined in the report we featured earlier this month, “levels of absence, persistent absence and exclusions” are far too high for children with SEND in Solihull.
The independent report was also critical of schools and the authorities, backing many of the parents’ claims, while praising Solihull’s performance in other areas.
Parents claim children are not supported within the school setting as their complex needs are little understood.
Many have said they face a struggle to get their children into school or get treatment after they develop mental health illnesses.
Other parents say schools have blamed them for their children’s illnesses, with some labelled as ‘Munchausen mothers’ – parents who are accused of or inferred to be making up their children’s illnesses.
There’s an overwhelming number of parents who are seeking help through support groups.
Some have experienced difficulties getting their child a diagnosis, specialist support or Educational Health Care (EHC) plans.
Some parents have to end their careers to care for and to understand what their children are entitled to under law and how to manage the problems that are caused by these ‘invisible disabilities’.
More than 1000 parents in total are members of two additional needs support groups in Solihull.
We attended a ‘Safe Space’ support group meeting last week and spoke to parents who wanted us to hear the real stories of their SEN children and the challenges they face.
Debby Allen, mother to Harrison Allen, aged 16, said: “My son has autism, dyslexia, dyspraxia, sensory processing disorder and Irlen Syndrome.
“Everything we had to do to get him support has been a fight whether it be a diagnosis, an educational health care plan, or a place in a SEN school.
“We don’t speak out because we are scared of the implications for our children. You get penalised.
“My son is out of school so I’m not scared to speak out now.
“Schools don’t want to help you. Inclusion (in a mainstream school) isn’t inclusion because there is no money to fund services.
“If you’re a disabled child in a wheelchair, you get ramps in place.
“If you’re autistic its not seen so they’re classed as naughty children. The schools label it as behaviour problems.
“They’re getting excluded because they’re not getting supported and getting the right help in place.
“After a fight, we got my son to a special school, but let me tell you, they have completely failed him.
“He has left school now and he can’t read or write. He doesn’t understand money. He can’t tell the time.”
In order to get a diagnosis in many cases, children need to meet the criteria for a referral to the Specialist Assessment Centre.
But many parents say this relies heavily on a mainstream school providing information and support.
However, parents say schools need ‘two terms of evidence’ to consider a child for assessment. Families say it is a long wait for children who may be dangerously unstable and behind in their education.
Suicide attempts and self-harming are not uncommon, parents say.
Debby added: “Trying to get a diagnosis took such a long time. Some schools refuse to admit that something is wrong to avoid costs.
“There are forums and support services you can speak to but the parents don’t know where they are.
“But everything is about funding. I don’t think that Solihull council gives any recognition to children with special needs.
“We have to send our children to Birmingham and Nuneaton to get specialist provision.”
Parents say they are forced to send children out of the borough because services aren’t available to offer support.
They also complain of paying large amounts of money to get private assessments because, they claim, specialist assessments are so difficult to access.
Zoe, mother of two girls with autism that was undetected until secondary school, said: “Our children are missing school because of unmet needs, the result of which can lead to things like crippling anxiety, significant sleep deprivation, depression, self harming and many more.
“Our children have disabilities, sometimes hidden disabilities, that affect every aspect of what some would call a ‘normal life’.
“They see, hear, feel, think about things in a completely different way to ‘normal children’.
“As wonderful as that can be, it presents significant problems in education.
“Problems that almost all parents of SEND children experience include a lack of knowledge in regards to the law and diagnosis in schools, lack of wanting to help or understand, and the financial costs if schools do engage in supporting our children.
The CQC report outlined a “lack of suitable local education provision for pupils who have an autistic spectrum disorder (ASD)”.
Zoe added: “Then there is ‘the blame game’ schools play when they claim that our children do not need support because they do not see sufficient evidence.
“Outside of education the waiting lists for diagnosis and treatment are outrageous.”
There is particular concern about specialist autism assessment waiting times, and occupational therapy waiting lists which Zoe claims can be over eight months.
Parents say that to get an appointment with mental health services can take between six and eight months- sometimes longer.
Serena, mother to a child named Jack, aged nine, with ASD and Sensory Processing Disorder, said: “All of this comes back to funding.
“I asked for a breakdown on Jack’s funding and they couldn’t actually give me the figures.
“Jack has been out of school since July last year. He wasn’t in class for the whole of year three; he was either in the corridor or in the side room.
“Occasionally he would get support from a one-to-one who was a dinner lady and she was untrained.
“On top of this, Jack has waited nearly three years for an EHC plan.
“Jack doesn’t want to go to school. His fear is embedded now. I know other children who are out of school because of mental health issues.
“He was frightened of his teacher because of the shouting. I was spending till 11 or 12 o clock trying to get him into school while he was crying and screaming.
“Sometimes Jack would try to jump out the car on the way to school. I couldn’t do it any longer.”
A Solihull council spokesperson responded to questions about funding and parents’ concerns, saying: “We work closely with all schools in Solihull to ensure all children get access to appropriate education opportunities.
“We were pleased that the inspectors recognised how good our services are for children, young people and families with SEND; however we know there is more work to do to continue to offer the services they need.
“In particular we know we need to further engage more effectively with parents to ensure the services we offer to them and their children meet their needs, now and in the future.
“We are pleased that the parent carer forum has been re-established and we have started to work together.
“It was also pleasing to see in the region of 70 parents/carers at the meeting with Ofsted/CQC during the SEND inspection.
“Parents have not been ignored and officers work closely with families in assessing need and taking account of parental preference.
“In Solihull every school has a Special Educational Needs Coordination Officer (SENCO). The DfE expects all SENCOs to have the national award for SENCO within three years of taking up post.
“Concerns have been raised nationally over many years regarding the funding available to local authorities for SEND provision.
“This is within the Higher Needs block grant and this year (2017/18) for Solihull it is £26,558,000 compared to £25,092,000 in 2016/17. This is an increase of 0.5 per cent.”
Parents say all schools are legally required to have at least one SENCO. But parents express concern that these teachers can be unqualified for up to three years while occupying the role.