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 mother, Leanne Gregory, who is 50 years old and from
Birmingham
She has not been able to resume her work as a community activist due to the full-time commitment required for caring for her five-year-old son Jude, who has intricate physical and mental health requirements.
Jude experienced a severe swelling in his air passage shortly after being born 10 weeks prematurely. This resulted in him having an extremely constricted airway filled with cysts because of subglottic stenosis — a condition where the area beneath the vocal cords and above the windpipe narrows considerably.
He has been hospitalized 21 times and has undergone eight surgeries up until now – including three of them.
Great Ormond Street Hospital
(GOSH) in London — to get rid of the cysts and enhance his airway.
Leanne and the doctors believe that Jude’s social, emotional, and psychological challenges stem from medical trauma, side effects of medications, and developmental delays due to extensive time spent in hospitals during his early years. Despite paying for her son to attend an independent school during Reception year, the staff informed them that they couldn’t continue managing without securing a support package through children’s social care services. After one year, Leanne hasn’t found a suitable school for Jude and is increasingly worried about her personal well-being as a result of the ongoing strain from this situation.
“Despite Jude being unwell from birth, we’ve never been directed to undergo a social work evaluation or caregiver assessment in Birmingham,” Leanne shared.
The i Paper
.
At GOSH, there is a social work office to assist with coordination, which isn’t available in Birmingham. In Birmingham, no one handles these processes. Instead, parent carers must manage and navigate everything themselves. Occasionally, I lie down at night thinking I might not get up in the morning due to the immense pressure; this is what we actually face.
The recent findings from national disability charity Sense have shown thatdisabled children are experiencing delays of up to 200 days for social care evaluations — an essential step in determining the assistance required by both the child and their family. Astonishingly, one out of every six families reported waiting longer than a year before being assessed by social services.
In the UK, there are approximately 1.8 million disabled children, and over a third of their parents report being unable to obtain the necessary support from children’s social services. Data acquired through Freedom of Information requests by Sense reveals that in 18 local councils, assessment periods exceed the legally mandated 45 days, with at least one council nearly doubling this timeframe.
The charity mentioned that these delays are causing extreme stress for families such as the Gregorys, bringing them close to their limits. They are urging the government to introduce a new legal obligation to evaluate every disabled child, simplifying procedures for families so that all children can receive the assistance they rightfully deserve and have an optimal beginning in life.
James Watson-O’Neill, who leads Sense as CEO, stated: “We shouldn’t let disabled kids suffer because our systems aren’t working properly. It’s time for the government to prioritize these children by setting up a straightforward and uniform process for their support along with a nationwide standard to evaluate all disabled kids. Such initiatives require sufficient financial backing and investments into community-based programs.”
Leanne stated: “The flawed SEND [special educational needs or disabilities] system is greatly affecting families, particularly women, our capacity to work, our well-being, as well as the welfare of the children.”
“Regardless of whom you talk to – whether it’s a single parent or a family with both parents present – everybody is taken aback upon coming across the system.”
However, the figures (within the document) do not come as a surprise at all.”
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Leanne thinks that one major problem behind certain hold-ups is that Jude doesn’t have a formal medical diagnosis or an Education, Health and Care (EHC) plan—a legally binding document detailing the particular educational, health, and social support requirements for children and young adults up to 25 years old; this is something Leanne is currently striving to obtain.
Even though it isn’t required for every child with special educational needs or disabilities, an Education Health and Care Plan might be looked into if a child has intricate requirements and their school or early education provider cannot offer the essential assistance.
Last year, Leanne conducted an evaluation over the phone with the Birmingham Children’s Trust, which offers child services on behalf of Birmingham City Council, aiming for some respite care assistance. However, she was flatly denied support. Upon questioning this choice, authorities stated that Jude didn’t satisfy their criteria. “I’m still unclear about what the criterion is since they’ve never explained it to me,” Leanne commented.
At this juncture, Leanne requested a referral to the Children and Adolescent Mental Health Services (CAMHS), a process that lasted an entire year. During this period, Jude’s behavior worsened significantly, culminating in him breaking Leanne’s nose at a CAMHS appointment in February.
The next month, Leanne was informed by the Birmingham City Council that Jude can participate in mainstream education—despite having submitted 16 supportive documents, one of which came from a pediatrician at GOSH detailing Jude’s sensory requirements—and contradicting those claims. Preparing for potential legal action, Leanne plans to engage in mediation with the council before proceeding to an appeal tribunal aimed at reversing this decision and securing the necessary assistance they feel should be provided.
CAMHS met with us and mentioned they would refer me to the Trust. However, since there isn’t a safeguarding concern regarding Jude, who has disabilities, the children’s disability team won’t step in, hence no support provided at this moment. Yet, should I experience a heart attack or stroke—a possibility due to constant stress—then they will begin assisting me. For now though, there is nothing available.
Taking care of Jude has left Leanne utterly drained. During the initial three and a half years of Jude’s life, she mentioned that he frequently fell ill, forcing her to handle administrative tasks, prepare meals, and attend to him late at night with just three or four hours of rest each time. Currently, she manages about five hours of sleep per night. Stress from this situation, as she sees it, has caused her to develop labyrinthitis, leaving her feeling lightheaded and nauseous along with experiencing symptoms of irritable bowel syndrome (IBS).
No one understands what we’re experiencing or how it truly feels. They can’t comprehend the struggle we face. It seems as though we’re unseen, yet we must endure this for ourselves and our kids. I don’t wish for him to remain in a specialized institution indefinitely when he might not require such an environment. If possible, I’d prefer not having him travel long distances alone via cab either. All I desire is ensuring my child receives appropriate support precisely when needed. While some individuals genuinely try their best, the entire system appears flawed. Though I won’t cease advocating, these battles leave me increasingly exhausted.
I am worried about having a stroke or a heart attack, yet I still wish to fight for my son. Having access to respite services would make things easier, but I seldom experience relief from stress and find myself utterly exhausted. This ongoing situation feels like it’s consuming me.
The Birmingham City Council and the government have been reached out to for their comments.