I often smile wryly when people think that because Marigold has a clear diagnosis and disability, we automatically qualify for a lot of things. Like a special school for instance. Many people have asked me whether a special school was on the cards for her when we were looking at schooling. I looked into a specialist speech and language school. It was amazing. Small classes with high ratios of specialised staff, constant access to dedicated speech and language therapists, physios and OTs on site, a hydrotherapy pool…it was an incredible facility and the achievement for its pupils was outstanding. I had psychologically moved out of London and bought a house nearby before I had even considered the issue of fees. Then I found out it cost £40K a year and generally people only got in there through tribunal, which promptly burst that little bubble.
Because getting specialist schooling, like getting funding for mainstream school through an ECHP, like getting access to services, like getting anything which involves money from your local authority, is never straightforward and most certainly does NOT fall into your lap. Which is fabulous, because as the parents of children with disabilities, I know we ALL have an abundance of time and emotional energy to spend endlessly chasing for any kind of support which might make our complicated lives a bit easier. I mean, what else could we possibly want to do?
You might have thought that if your child clearly has a noticeable degree of physical and learning disability, surely a blue badge would be a no brainer?
Sound that wrong klaxon loudly! How dare you assume that!
Getting a blue badge has been an arduous, eight month long process of submitting extensive paperwork, being asked for more paperwork, paperwork getting lost (obvs), a mobility assessment, a refusal, an appeal, a further assessment before finally the bloody thing turned up this weekend. We first applied last year.
What is especially annoying about this, is that every day I drop Marigold to her preschool, I have had to drive past this disabled parking space DIRECTLY outside her school, where it would be so easy to park up and then carry her in.
It would have made morning drop offs 200% less stressful. But instead, I have had to park two roads away and make the executive decision on whether to try and manhandle her into her buggy (which she hates) to walk a short distance and then JUST as she is settling down, remove her from buggy (which she hates) to go into school OR carry all 18kg of her down two streets, which is backbreaking but actually less stressful, especially when you are also trying to get another child to school.
Our blue badge has arrived the week Marigold leaves her preschool. Whilst I am grateful, I can’t help but laugh at the irony of only having two days to benefit from that heckin’ parking space!
For a long time, accessible parking was not so much of an issue. Marigold was such a tiny tot and wasn’t up on her feet until she was two years and eight months. But over the last 18 months, she has got a lot heavier, a lot stronger and a lot more wilful. She knows what she likes and she doesn’t like. And unsurprisingly, being manhandled into / out of her car seat in a tiny space between our car and someone else’s in a car park when all the child parking spaces are full, she is NOT a fan of. We realised last year that having accessible parking would remove a LOT of stress when it came to going out in the car.
But applying for a blue badge when your child is under five has a little bit of a loop hole. To qualify for a blue badge in the most straightforward way, you have to be on higher rate mobility component in your DLA (disability living allowance). As Marigold was not yet mobile when we applied for ours, she does not get the higher rate component. So it could have meant reapplying. But then we heard horror story upon horror story of people who had done this and lost their higher care component, THEN not qualified for mobility and ended up getting less support than ever, which seemed rather unfair and like a route we would rather not go down.
Through an amazing organisation called Contact a Family, we found out a way to apply which meant not sacrificing our DLA higher care component, which is handy as this goes directly on astronomical car parking rates at St Thomas hospital car park. And all it took were the following hoops to jump through, over a sustained period of eight months:
- Receive baffling form crafted in the most complex of English language– requires PHD to complete
- Form requests a load of evidence you have to sift through eight lever arch boxes of medical notes to find
- Submit form
- Wait three months
- Follow up with Lambeth Accessible Transport who cannot locate application (obvs)
- Finally receive communication from Lambeth to advice key information is missing (standard)
- Send further evidence
- Follow up x8 with people who seem confused as to whether they even work for Lambeth – eventually escalate to someone apparently senior
- Finally get notification of a mobility assessment – there is a three month wait – kick off to get a sooner appointment
- Turn up at independent assessment with assessor who seems to instantly hate us….why?!
- Finally go in for bizarre assessment going over all the questions we answered in form – assessor makes us walk a bit. Marigold naturally has a good walking moment and decides NOT to sit down in middle of pavement as is usually her way. Obvs.
- Return from holiday to find a refusal. Letter states “Although your child clearly has a disability, she is not disabled enough to qualify for a blue badge.” Yes, for real.
- Appeal, including letter from paediatrician.
- Appeal goes missing. Standard.
- Escalate to some other random senior person. Rant at them.
- Get referred for a telephone mobility assessment (odd – how can you assess mobility over telephone?)
- Sympathetic, sane, experienced women, who acknowledges system is entirely broken and also that previous assessor failed to note that whilst Marigold could walk for 20 metres, it involved being supported by two people. Yes, thanks to that assessor.
- Letter arrives stating there is missing information. Turns out missing information is the payment required for a blue badge. Obvs.
- Blue badge arrives some three weeks later.
- Cost of provision of blue badge = not a lot. Cost of admin to the taxpayer for the eight month application process = significant (please note my husband put in this bullet, so passionately he feels about this. He never does this.)
One of the issues with applying for blue badges for children is that under the age of five years, they are awarded on pure physical need. Behavioural aspects such as total lack of risk awareness, running into car parks, sitting down in the middle of the road, have not been taken into consideration to date. Which is, of course, ridiculous. But I do understand this is set to change and they are looking to bring in new criteria so behaviours and also invisible illnesses will be taken into consideration. I welcome this change, but my heart goes out to those who have not had the time / resources / emotional energy to battle as we have done, to be able to get this small thing that will make such a difference to their daily lives. I have heard the story of one parent who took Lambeth to court four times – FOUR times – to get a blue badge for their child who has autism! For real.
I am, as ever, grateful that we have the resources to fight all the fights we need to get all these things that make our lives that little bit easier. I am beyond excited about going on day trips and being able to park accessibly, which will make everything so much easier for us, and for Marigold. But also as ever, I worry about all those people who are not fortunate enough to be in this position, and wonder how we can be living in a world where we are made to jump through so many hoops, to get something so small, which can make such an obvious difference to daily life, when caring for someone with a disability.
Some useful links:
To apply for a blue badge, see following link: https://www.gov.uk/apply-blue-badge
Contact a Family provides guidance and information for the the families of disabled children: https://contact.org.uk/
Unique, the chromosome disorder awareness charity provides support and information for those affected by rare chromosome disorders. www.rarechromo.org