Hornchurch mother shares heartbreaking letter to councillors in regards to Havering’s children with disabilities.

Ruth Kettle-Frisby will be attending tonight’s scrutiny meeting and has shared the following letter with Havering’s Leader of the Council, Councillor Ray Morgon on behalf of parents of children with disabilities in Havering.

Nothing prepared me for the shock, heartbreak, fear and trauma that I experienced after I had my daughter in the summer of 2017. My beautiful baby was having multiple, worsening seizures that could not be controlled, and when we finally received a diagnosis – nearly a year later – the news was not what I wanted to hear: I was told that my baby had a neurodevelopmental condition that meant she will depend on a high level of support in all aspects of her life for the rest of her life.

I put my energy into giving her the best chances possible at a happy, healthy life, but this wasn’t easy. I became a specialist in multiple aspects of her condition and had to depend on charities to give her basic developmental opportunities through access to specialised equipment, private physiotherapy, vision therapy…the list goes on. There has been a lot of bureaucracy: multiple forms that force me to relive the trauma in cold, sterile language that brackets off all my daughter’s bravery and her unique light in this world. I was sleepwalking through life, the world of disability was entirely knew and I was in no position to question bureaucratic processes.

I was head of department at a sixth form college in Havering, and an external A Level examiner, but it became obvious to me that the only responsible thing I could do was give up my teaching career for the sake of my own mental health and to be the best mother and carer I could be. This made money much tighter, butwas the right decision for us all. I emerged from, as it were, the top layer of my trauma, and I became able to more fully appreciate how lucky myself, my family, friends and wider community are to have her here, brightening everything up with her giggles and vocalisations.

Why am I telling you this? Because I want to draw your attention to other parents in our borough who will still be living in the thick of their own traumas, with richly diverse but overlapping experiences to my own; overlapping at the points at which society actively disables our children. These parents and carers live under constant pressure, overwhelmed and exhausted with hospital visits; therapy; more children than I have;multiple children who are disabled; fewer resources; neurodivergences themselves. We do an important job caring for our children, each with their unique nuances of character: caring entails great sensitivity, active listening, intensive interaction, imagination, creativity, and constant advocacy in a competitive society that puts our children at the bottom of the pile. We are given limited choices of essential equipment such as wheelchairs – that tend to fit budgets more than needs -and we have to fight for equipment and opportunities our children need. However, in the long-term, we carers save Havering (and Britain) thousands and thousands of pounds – with our loving commitment to our children’s care, responding with love and well-informed rigour to our children’s needs.

To many of us, Havering’s consultation on Home to School Transport felt goal-driven, biased, and lacking in integrity. At different stages, it equated ‘changes’ with vague, unsubstantiated, leading words such as ‘flexibility’, ‘empowerment’, ‘independence’ and even ‘transformation’.  Indeed, I don’t think the nature of the proposals was ever really clear based on the equivocal, euphemistic language used. On the face of it, the cabinet offered personalised ‘choice’, but conversely, we have also witnessed admissions of potential ‘impact’, nodding to the need to reduce the ‘impact’ of these ‘changes’ in amendments at Full Council. This admission, coupled with explicit goals of cutting costs in terms such as ‘cost effective’, reflecting central government guidelines for ‘Delivering better value’, reveal the essence of the policy as we see it.

School transport should always be about automatic rights to get to school safely, and not about putting carers through bureaucratic processes that compel them to feel obliged to accept Personal Travel Budgets (PTBs) as the standard method on offer. Parents are witnessing what appears to be this proposed policy being rolled out already, with new forms encouraging PTBs. Parents have sought support in acute distress, faced with the reality of managing cumbersome PTBs. They are already feeling frightened and overwhelmed: organising taxis presents serious safeguarding risks, and managing complex budgets can mean having to fork out unaffordably large sums up front, risking losing money as a result of all the fluctuating variables involved in such a process. 

Havering are not allowed to enforce a blanket PTB policy, but for many, it will feel just like this. They will not be in any position – due to trauma, exhaustion and other factors that disadvantage carers – to question whether there are other options. My point is that, frankly, they really shouldn’t have to. By outsourcing essential services for short-term financial gain – and shifting the burden of responsibility (financial, cognitive, psychological and emotional) onto parents and carers – active harm is being caused, and our children’s and their carers rights, safety and wellbeing are being seriously compromised.

The message being communicated by the proposed‘changes’ is that disabled children are not trying hard enough to behave like good non-disabled children who are able to walk to school or catch buses independently. They represent a financial burden; essentially, they ought to be less dependent on services they need because their needs cost too much money. This is why travel training is being encouraged: as if it’s not disability, but incompetence that prevents our disabled children from accessing public transport. 

I wasn’t travel trained. I didn’t need to be because public transport was designed for non disabled people like me. Training kids to use a system that wasn’t designed for them is ableist and reinforces the message that disabled people are not valued.

We are subject to some truly disgraceful discrimination and stigma. This is clearly evidenced by a particularly cruel and ignorant response by a resident for whom the policy won’t impact, which – for some reason – is explicitly documented in the report for the Overview & Scrutiny meeting this evening. 

Our dependence on services that Havering are supposed to provide is no sign of weakness, but nevertheless creates an inherent power imbalance. It breaks my heart to tell you this, but it’s important that you hear it: many parents are terrified of challenging their local authority when it comes to their disabled children. Nobody should be living in fear, when all we want to do is give our disadvantaged children what they are entitled to at a really basic level. 

It is our deeply held conviction, to allude to the famous quite by Oscar Wilde, that value and monetary cost are not the same thing. In our appeal for you to uphold us in opposing these proposed cuts, we ask you to recognise and celebrate the value of disabled children in our borough by protecting their basic rights. Services should be reliable and robust, centring children and what they need, not revenue.

Yours sincerely,

Ruth Kettle-Frisby

On behalf of parents of children with disabilities in Havering

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