with Sarah London, mother to a 17-year-old, severely autistic young man
We are all painfully aware of the lack of special school places and the impact that this has on young people, their families and the schools that are having to try and bridge the gap without adequate funding or resources. However, we hear far less about how these gaps in provision affect our young people with the most complex needs which require highly specialised residential support.
Today Sarah London shares her family's fight to prevent her son becoming homeless after his residential home closed without consultation, giving the families only three weeks' notice.
Where is the provision for those with the most significant needs? by Sarah London
As a mother of a 17-year-old severely autistic young man, I feel pretty accomplished in navigating the complex systems and processes that comes with special needs. I’ve been a voice for a child who cannot speak or comprehend his place in the world. I’ve immersed myself in a world of EHCPs, communication systems, sensory diets and behaviour support plans. All of which, at times, have broken me. Forced me to bury my head in the sand and suffer the overwhelm and horrendous guilt of parental failure. But then there have been the times where the utter injustice of it all has enraged and empowered me to fight, to TRY and change the utterly broken system that underpins my child’s entire life.
Where it all started
At the age of seven, my child’s needs became unmanageable at home and his special school was on the brink of excluding him. Caring for a severely autistic child, who is also profoundly deaf, non-verbal, and has significant learning and behavioural difficulties is a challenge, to say the least. I didn’t want my child to go into a residential school at this young age but I had no choice. Neither did I have a choice over where this placement would be; he was sent out-of-county. No provision existed for him close to home. At just seven, I packed up my son’s belongings and moved him 75 miles away from all he’d ever known.
The reality of being an absent parent, a role I never wanted, was forced upon me. I became a mother who detached herself from her child in order to function, to live. Letting go of not putting my child to bed, knowing that if he wakes frightened in the night and wants me I can’t be there. Accepting that strangers will spend more time with my child than me.
The only positive I can take from this is that it has made me fiercely protective, if I cannot perform these motherly duties then the people who can better do a damn good job!
However, the truth is, as a parent you feel that no one can care for your child better than you. No one can even come close. This situation was always destined to fail.
And it has failed, epically.
My child was made homeless
My biggest battle began on 22nd November 2022, when my son’s school gave him notice to leave in three weeks’ time. This was a residential placement that has become my child’s home 52 weeks a year, a place of education, a therapy centre - a multidisciplinary security blanket.
After nearly 10 years, my boy was expected to leave, no transition and no preparation. All because this private company were trying to avoid the implications of a forced closure by Ofsted. The fourth consecutive ‘inadequate’ rating finally came with some consequences. I hadn’t been happy with the care my son received for many years but as a parent, you have little control. We are dealing with a private company profiting from vulnerable individuals who require care above and beyond you and me. Every child is a business transaction.
My boy’s world was about to fall apart. I fought so hard; raised awareness through the media, created campaigns on social media, recorded a podcast and worked alongside our local authority and MP, even funding legal representation.
The day before his eviction the notice period was suspended and my child was given the chance to spend Christmas in his home. I like to think that we live in a society that was as outraged as me that a vulnerable child could be made homeless just before Christmas by a company that claims ‘to actively enable each and every one of the people in our care to achieve their personal best’.
A reprieve, but not a solution
I hoped that my efforts would resonate with the powers that be, appealing to their better nature and tug on their heartstrings as human beings. But the truth is, they had no choice but to concede. I wasn’t going to move my son out and neither was our LA, simply because there was nowhere else or my boy to go. Despite the relentless searching and begging to get my child what he deserves, he remains in limbo, left at a school recognised as delivering inadequate care and with potential safeguarding risks.
Hundreds of care providers have been contacted. All avenues have been explored, from private rentals and Airbnbs to residential schools hundreds of miles away. Extreme measures were put in place to protect him from being admitted to a psychiatric hospital or ATU. He does not have a mental illness that can be treated, he is an autistic boy who requires support, not drugs.
Where we are now
Nearly 10 years on from me giving up my child and the local authority placing him miles away, they still do not have any provision that meets his needs. Due to his age, no school will take him as he’s essentially begun the transition process into what is considered adulthood. But he isn’t an adult, he’s not yet 18. So where does he fit, where is his place in society?
This is SEND no man’s land. The legal requirement for education until 18 is looking uncertain, finding an adult care provider with dual registration (Ofsted & CQC) is limiting, a private rental needs to regulated by someone as he’s ‘technically’ a child. We’ve fallen into a rabbit hole. No easy way out and it’s beginning to look like a very dark place.
For me, there is only one way out. Local authorities need to take back control, not be at the mercy of private companies who can make up their own rules. Quite simply if there isn’t a provision suitable, then create one. Bring children placed out-of-county back home, give them their families and provide a setting for a purposeful life. It’s just basic human rights.
I will continue to fight for this right. I don’t believe I’m alone, I’m sure there are many parents out there who are in the same position, desperate to bring their child home. For now, I’m getting used to rejection. The countless responses of providers not having availability or resources to meet my son’s needs. The reality that he really has nowhere to go.
About the author
Sarah London is the mother of three children. Her eldest, Harrison is 17 and has severe autism and other complex needs who’s lived at a residential school since he was seven. As he now begins the transition into adulthood she finds herself exploring unknown territory - adapting to the ever-evolving role of a parent to a child with special needs.
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