Last week, as I was sitting in the garden writing yet another complaint about Haringey, our local authority, when I came across news that there is a £1.5 billion funding gap in disabled children’s services (https://specialneedsjungle.com/1-5-billion-funding-gap-for-disabled-childrens-services-in-the-uk/).
One-point-five-BILLION-pounds. My heart sank. I could write complaints until my fingers bled, but I knew that this bit of news meant that me, and hundreds, if not thousands parents like me in the UK, would be doing exactly the same thing – standing alone against the big machinery of local government callously guarding the purse strings rather than caring for their weakest residents.
As a lawyer it is easy for me to see how authorities flaunt their legal duties recklessly when it comes to families like ours. The law is literally being broken left, right and centre. But after a years in practice I also know that families with disabled children are in a poor bargaining position to challenge these failures: People do not know their rights, they are simply too tired and busy to challenge authorities, legal aid is hard to come by and there aren’t many lawyers willing to take on these “small” cases. The power balance is completely screwed up, and it is sick and disabled kids who are paying the price.
Disheartening, right? Enough to make you want to quit, lose faith in goodness of people and move far, far away (maybe the moon). Yes – very much so, but that is not an option for us. Freya needs 24/7 awake supervision to keep her alive. She won’t be able to go to nursery or school if she doesn’t have a fully tracheostomy competent one-to-one. We as a family simply cannot do it alone – we need help. I wish it wasn’t so – but it is and this is the reality we live right now.
So I looked back at our journey – the initial shock, the feeling of isolation and loneliness, the fear and the hopelessness. And friendly faces started coming to my mind – the grandmother who told us best places for us to do laundry at the hospital if we were stuck there for weeks (we were. For nearly a year). The mum and the daughter in the maxfax waiting room telling us their success story from a baby with no mouth opening to a beautiful young lady eating and drinking fine. The local mum who shared me her daughter’s trachy-vent journey and gave me essential tips on navigate in this new world. My mum friends with whom we came up with the concept of “PICU wine” (when one of us had a kid in intensive care the others would take the mum for a glass of wine in the pub next door last thing before bed to get out of the hospital environment). The facebook groups that have been essential sources of support and information.
And it came to me. Wouldn’t it be wonderful if the special needs parents in my area connected? We live in Haringey, one of the poorest neighbourhoods in North London with a tragic and grim past of failing children (both Baby P and Victoria Climbe were Haringey kids, murdered by their relatives whilst Haringey was allegedly keeping them safe by having them on child protection register).
I already know first hand that disabled children were being failed by Haringey. Families are not getting their care hours because the local authority and the CCG have not, for years, monitored delivery of care packages (or acted on parents reporting issues). Assessments are not being done on time and when they are, they are decided by clandestine panels, that have no real appeals processes and who refuse to provide any basis for the decisions. Parents of disabled children are told to that the only way for their children to attend nursery is for the parent to go with them as Haringey refuses to take any practical steps to hire or train up staff to look after disabled children safely.
And if this was happening to me and my friends, then there must be more families out there. Families at the start of their special needs journey, who are feeling lost and alone. Families who have been there, done that and got the t-shirt and who love sharing their knowledge. And there must be parents like me out there that have a hard time connecting and bonding with the other parents at school gates because the life we lead is so different from theirs. Parents who could do with a big cup of coffee and an opportunity to vent our feelings to someone who has an idea where we are coming from.
So I set up a closed FB group – Haringey SEND Families Action Group- https://www.facebook.com/groups/1062654840567132/?ref=br_tf . If you are a member of a SEND Family in Haringey please join. Share it with those you think might benefit. We create the world we see and together we can make the lives of SEND families a bit easier. Together we are stronger!