Leanne Gregory has been unable to return to her community worker job because she has to take care of her five-year-old son, Jude
A single mother of a disabled child who has been denied schooling for a year says the special education needs system is “totally broken”.
Since becoming a mum Leanne Gregory, 50, from Birmingham, has been unable to return to her career as a community worker because she has to devote all her time to taking care of her five-year-old son Jude, who has complex physical and mental health needs.
Jude suffered a near-fatal swelling in his airway soon after he was born 10 weeks premature. He was left with a dangerously narrow airway full of cysts due to subglottic stenosis – a narrowing of the subglottic airway, the region below the vocal cords and above the trachea.
He has been admitted to hospital 21 times and has undergone eight surgeries so far – including three at Great Ormond Street Hospital (GOSH) in London – to remove the cysts and improve his airway.
Leanne and doctors think Jude’s social, emotional and psychological issues have been caused by medical trauma, medication effects and development delays -caused by spending so much of his early life in hospital. Although Leanne paid for a place for her son at an independent school during reception year, staff said they could no longer cope unless she was able to secure a children’s social care support package.
One year on she has not found a school that meets her son’s needs and is fearful of her own health because of the stress caused by her being unable to secure him schooling.
“Jude has been sick since birth yet we have never been referred in Birmingham to social work assessment or carer’s assessment,” Leanne told The i Paper.
“In GOSH you have a social work office to help coordinate things for you – you don’t have that in Birmingham. There is nobody feeding into any of that process. Parent carers are having to coordinate and navigate everything. Sometimes I go to bed and think I may not wake up in the morning because of the stress, that’s the reality.”
It comes as new research from national disability charity Sense revealed this month that disabled children are facing over 200-day waits for social care assessments – a critical part of identifying the support a child and their family need. Some families (17 per cent) said they had to wait more than a year to be seen by social services.
There are 1.8 million disabled children in the UK, and more than a third of parents say they have been unable to access the support they need from children’s social services. In 18 local authorities, the length of assessments is more than the 45-day legal limit, with one local authority almost double the legal limit, according to Freedom of Information data obtained by Sense.
The charity said the delays are pushing families like the Gregorys to breaking point. It is now calling for the Government to implement a new legal duty to assess all disabled children, streamlining the process for families and ensuring all children get the help they are legally entitled to and the best start in life.
James Watson-O’Neill, chief executive of Sense, said: “Disabled children should not be bearing the brunt of a broken system. We’re calling on the Government to make disabled children a priority, by establishing a clear and consistent pathway to support and a national threshold to assess all disabled children. These must be backed by adequate funding and investment in local services.”
Leanne said: “This broken SEND [special educational need or disability] system is having a massive impact on families, on women, on our ability to work, on our health and the children.
“No matter who you speak to – single parent, two-parent families – everyone is shocked when they encounter the system – but the statistics (in the report) are not a shock at all.”
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Leanne believes a key issue causing some delays is that Jude does not yet have a formal medical diagnosis or an Education, Health and Care (ECH) plan – a legal document outlining the specific educational, health, and social care needs of a child or young person up to 25 years of age; which she is now battling to get.
Although it is not needed by everyone with a special educational need or disability, if a child’s needs are complex and their school or early years setting can’t provide the necessary support, an EHCP may be considered.
Last year, Leanne did an assessment over the phone with the Birmingham Children’s Trust, which provides children’s services on behalf of Birmingham City Council, hoping she would be offered some respite care, but says she was refused help “point blank”. When she challenged that decision, officials said Jude did not meet their threshold. “I still don’t know what the threshold is as they’ve never told me,” Leanne said.
By this stage Leanne also asked for a Children and Adolescent Mental Health Services (CAMHS) referral which took a year, during which time Jude’s behaviour deteriorated to the point where he broke Leanne’s nose during one CAMHS session in February.
The following month, Leanne said Birmingham City Council told her Jude is fine to be in mainstream education – despite 16 supporting documents from Leanne, including a psychologist from GOSH describing Jude’s sensory needs – saying otherwise. Leanne is preparing to take the council to mediation and then, as expected, to a tribunal to overturn the decision and get the support she believes she is entitled to.
“CAMHS saw us and said they would refer me to the Trust. But as there is no safeguarding issue with Jude the children with disabilities team won’t get involved so you don’t get support. But say I had a heart attack or stroke, which I’m vulnerable to having because of the relentless stress, then they will start working with me. But for now there is no help.”
Caring for Jude has left Leanne exhausted. For the first three and a half years of Jude’s life, she said, he was constantly sick so she would do admin, food prep and take care of him in the middle of the night, only sleeping for three or four hours. Now she often gets five hours sleep a night. She believes stress has led to her suffering labyrinthitis, which makes her feel dizzy and sick, and irritable bowel syndrome (IBS).
“No one cares what we are going through or what it feels like. People have no idea what the fight is like. We feel invisible but we have to survive it for ourselves and for our children. I don’t want him to be in a special school forever, if he doesn’t need that, I don’t want him to go miles away in a taxi. I just want my child to have the right help he needs at the right time. There are good people out there who are trying, but the system is totally broken. I’m never going to stop fighting but I’m getting really tired.
“I fear I’ll have a stroke or a heart attack but I still want to fight for my boy. If I’d had respite opportunities, it would be better, but I rarely feel the absence of stress and I’m knackered. I feel like this situation is killing me.”
Birmingham City Council and the Government have been contacted for comment.
