I’ve been trying to reach a human on the end of a phone since July. My son has hard needs. How can I advocate for him when stone-thick, virtual walls block and silence my voice?
Has Hampshire County Council barricaded itself into ‘The Castle’? Based in Winchester, The Castle is the Council’s actual address. Though not the original medieval castle established by William the Conqueror in the 11th Century and from which England was once governed, the council hq does happen to sit on the very same street.
My calls to them are dodged and emails left hanging and I’m imagining council administrators hiding, not behind ancient stone ramparts, but beyond portal after portal after portal of an equally impenetrable online fortress; the hants.gov.uk website is so very user-unfriendly, full of hostile design and I’m left deeply yearning for a direct communication with someone.
I sensed something wasn’t quite right as summer drew to a close. The usual out of the blue call from a taxi service towards the end of August, often during the last weekend before the new academic year, it simply didn’t come. Initially, I thought it must be an oversight. It wasn’t.
It’s standard practice not to hear anything from the Transport Service until the last conceivable minute. As crazy unhelpful as that sounds. There’s never a long notice given for SEN ( special educational needs ) transport. I’ve long since given up any notion of forecasting for September. It’s always necessarily been a last minute, wild scramble to form a plan. This has been the cause of a lot of anxiety and is far from ideal for all concerned. All of us struggle to some degree or another with uncertainty and children with SEN definitely do. Predictability and routine help to down regulate and calm so all this last-minute arrangement of logistics I’ve always thought really frustrating, unhelpful and dysfunctional.
Throughout his entire school years Jake has had an EHCP ( educational health and care plan ). He has a dual diagnosis of Down Syndrome and autism and has qualified for transport to and from school. This is, in principle, a very positive thing and I’m appreciative of this service as there are no SEN schools located in or near the town where we live.
Each year though, I’m bracing myself as September approaches to find out when the assigned minibus / taxi is going to be arriving. It can vary wildly, anything between 7:15 a.m. and 9:00 a.m. and this has impacted things quite a lot. I’ve learnt to roll with the unknown of this - and plenty else besides - and to adjust work commitments in response along with more personal bending to minimally disrupt the school routines of his siblings.
Nothing compares to this year’s disruption though. Since term began in the first week of September, he is entirely without transport to and from his college setting and I can’t seem to do anything to reinitiate it. He’s had a shared taxi for two years and now, nada, zilcho, niente and no explanation as to why. And this despite there being a student two streets away with whom he shared his taxi all last year. Of course, what with good old GDPR, I’m told it’s impossible for either me or the college to suggest that ridiculously economical joined-up-thinking solution to the problem.
No. I’m faced with no alternative but to drive the 2hr (56 mile) daily round trip with him myself. Factoring in his college start and finish times, this leaves just four paltry, meagre hours in between for me to attempt to generate some semblance of an income as a single parent carer.
Four hours is, well, it’s nothing is it? A half day at most though a massively restricted one which prevents me straying very far from my base and back. I need to participate in economic activity, to earn money to pay the bills and to meet our rent. I feel stuck. Stuck between a medieval rock and a virtual hard place.
But regardless of my need to work, what about my son’s needs to attend college? Jake desperately needs the rhythm, social stimulation and group learning opportunities that college life provides. If this drops away, his mental wellbeing and overall health will plummet and fast.
So which part of me do I cleave off and seal away in a tight-lidded box for the time being, so the inevitable guilt doesn’t seep in? I can’t do both the driving and the working simultaneously so which is it to be? This is the question I’m asking myself as I write this in the small hours.
Do I cut off the earner at her legs and acquiesce, continue to taxi him and take the financial hit? Again. Take the financial hit as his Mother yet again. For it seems to most often be the woman who pays the price in this, far and wide and almost always in cases with SEN children. After already forfeiting economic activity and employment during his early years to ensure he got the best possible chance and start at life, could communicate and socialise and was encouraged to learn to emotionally regulate himself. I believed I was doing the right thing in that. Not just doing our family a favour in the investing energy and time in him but, in the process, also doing the state too a favour further down the line if I dare to lift my gaze that far ahead.
Or do I sever the Mother? Do I cut her off at the strong gut instinct deep within me and cauterise myself, tell him I can no longer drive him back and forth each day? It’s simply untenable, not viable. Neither of these are words he’d understand by the way, so they’re both out. And my gut instinct screams don’t do it, as he will feel disconnected, profoundly isolated at home away from his peer group and descend very quickly into negative and disordered behaviours.
Early years intervention in terms of public policy approach and child development theory is widely recognised to be of vital importance and benefit to the longterm prospects of every child, arguably even more so for the child with SEN. The investment he received from me during this time - and it was considerable, I assure you, I took it very seriously this role - was sure to stand him in good stead for his adult future, right?
So why has the system not got his back now? Why can’t the council repair this rupture of service? Why does the buck seem to stop with me always, with the Mother, each and every single time that these broken, brittle systems crumble? Am I to be yoked to him from cradle to grave and plug all and each of the many gaps in care provision, this being just the most recent example? Because I actually can’t allow myself to do that, to be the buck where it always stops; I’ve done it before and spread myself so gauze thin that I couldn’t shoulder the load. He’s a much heavier load now too. He’s almost a man
.Winchester Castle is now mostly destroyed except for The Great Hall, home to The Round Table which shows King Henry VIII at the top, sitting above the Tudor rose
County Councils the nation over have long been warning of service cuts and potential insolvency. SEND transport is allegedly an area of significant financial risk and, unfortunately in this instance, we live in Hampshire a council which is cited as facing a particularly high overspend to the tune of the eye-watering figure of £9m.
I read this now having typed it and feel hopeless in highlighting this sorry financial fact, yet also know of so many timetabling inefficiencies which are needlessly contributing to this giant sum. Countless taxis snaking one after the other through college gates with one single student passenger onboard where instead, two, three, four students could be scheduled to travel together. Why not deliver a minibus alternative and save some precious council pounds on pothole repairs through a few less vehicles being on the road? Actually, I’ve just read that Hampshire were indeed considering the minibus alternative last autumn. Not soon enough it seems.
Roger Gough, the children's services spokesperson for the CCN*, said that while councils were working hard to provide transport services, the reality was "a mounting tide of costs in Send transport, exacerbated by long distances travelled in large rural areas, complex needs and parental expectations".1
*County Council Network
If there is no available, suitable school provision nearby to accommodate a child, then the ‘long distances travelled’ is not something that parents can do very much about, can they? As for the ‘parental expectations’ I’m confused by what I’m sensing here is negative inference within this statement; but of course parents have expectations, and it’s surely their prerogative to do so? I know I do, I have an expectation that my son is deserving of and can access his education. And children in the UK have a right to access to an effective education in existing schools/institutions as protected by Article 2 Protocol 1 of the Human Rights Act.
I’m also remembering the recent insolvency declaration of Birmingham City Council and am minded to reference the scandal surrounding taxi contract overpayment in this bankruptcy to the almost inconceivable sum of £11 million. I say almost inconceivable and yet as an amount it is near enough parallel to the also gargantuan Hampshire overspend.
The £64,938.27 question for bankrupt Birmingham Council: Why did all 163 school-run taxi contracts over the last three years cost EXACTLY the same? Authority faces new quiz over cab firm at centre of £11M over-payment row 2
BCC is alleged to have overpaid a school taxi firm £11million by publicly pricing all 163 contracts at exactly £64,938.27 - just low enough to avoid publishing transparency data. That’s some level of bold corruption right there.
Whilst I’m not suggesting my home county’s overspend is due to similar circumstances uncovered at BCC, I am willing to wager that it’s equally not down to wildly out of touch expectations on the part of parents. Parents who find themselves simply trying to do right by their children and secure for them a suitable education.
Jake is really confused by the whole situation and all of my wooly, unclear explanations. They make no sense to his mind. There was a taxi then. Where is the taxi now? Is basically how he’s interpreting this.
Something he does have though, if not a nuanced understanding of the dilemma, is agency. And initiative. I witnessed this at play yesterday when I received a call from his college coordinator, a super guy called Dave. “I’m receiving reports from local taxi firms that Jake is calling them to book himself a taxi” said Dave. I smiled when I heard this. His temerity and determination galvanise me to keep going and to press for resolution on his behalf.
Local government finance systems are broken and hostile design further amplifies this with an unbearable deafening silence, which in turn raises the rage and disconnects the already marginalised yet more so.
I haven’t decided yet what I’ll do tomorrow when morning comes; drive him to college or coax him to stay home so I can work? I need sleep first as it’s already way after midnight.
I’m so sorry to hear about all this. I finally had a good transport arrangement last year for our son, and begged to keep it (the driver and escort were also keen to keep going). Of course it was taken away, and my son has exhausted three new arrangements in the space of two months. Not his fault at all though. So stressful. Good luck with everything.