Follow Harry* and his mum in their own words through his final year in school, planning and preparing for his next steps.
*Names have been changed
The story so far…
In September the school organised a transition planning meeting and the family arranged person centred planning separately with a grant from ILF Scotland. Harry’s chosen the people he wants to be part of the person centred planning process, but they’re still trying to find a date to meet.
It’s the tenth month of what has been a rollercoaster year in ways we could never have imagined!
In terms of transition, it’s been fairly quiet. We’re trying to set up a virtual meeting for TEAM HARRY, and between illness and people’s availability we are still chasing a date to get it in the diary. I’m a little worried about trying to pin down all these busy people but hopefully November will be more fruitful.
At least the school sent me the notes I asked for from the transition meeting they organised last month, so we have those.
Harry is really not enjoying school at the moment – a lot of the changes due to COVID-19 being the main reason.
“It’s no fun being cold because the windows are open all the time,” he grumbles, while I try to encourage him to wear more layers to school. “I just want to play in the playground, have fun and be allowed to push the 1st years on the swings … stupid coronavirus!”
Yup, I guess everyone is feeling that way about it now: it’s sucking the joy out of a lot of day to day simple pleasures.
Making Self Directed Support work for you *
We’ve been trying to be proactive in other ways, thinking about longer term goals, and one of these is how to get about.
Harry has limited opportunity to self-travel and obviously since COVID he’s had even less. One thing we are trying to set up is using his Self Directed Support under option 1 to employ a PA (personal assistant) to encourage Harry to learn how to use public transport safely and navigate his way across town for his youth group. That will give him more independence than just being in either the school bus or ‘Mum’s Taxi’ all the time.
The other task we have in mind for his PA is to support Harry to safely prepare and cook a family meal once a week.
We got great advice about employing a PA from a local disability support agency. I attended some virtual sessions they ran, and they sent me useful information on how to write a job advert and also the ins and outs of the paperwork – for example, how to handle tax and so on, as we will effectively become employers with all that means for things like paying a salary. The agency has advertised the job on their website and also on the job pages of the local universities, so hopefully we’ll have a choice of people.
Baby you can drive my car…
The other thing that we have started to consider is if Harry could learn to drive. Does he have the capacity to learn to drive? Maybe an automatic car?
And where do we start?
His 17th birthday is fast approaching and as his neurotypical peers from his childhood are all applying for their provisional licenses Harry is genuinely interested to find out if he could get behind a wheel of a real car, rather than just driving one on an XBox game.
We looked up the DVLA website to see if we could apply for a provisional licence, and yes – it seemed we could.
We had to declare his medical conditions, and then looked up the extra information we need to submit. The main factor if you have a disability is if there is “fitness to drive”, and it appears you need to get a referral via your GP. (Find more information about the Scottish Driving Assessment Service here.)
Harry and I are excited, but nervous at the same time.
He just missed the cut off for staying on Disability Living Allowance until he was 18, so is now entitled to Personal Independence Payment and he receives a mobility component as part of that. We don’t really know how trying to help him become more independent about transport will affect that – although we obviously want him to be able to travel on his own, realistically he’s going to keep needing support for a long time yet.
Dem bones, dem bones …
The end of the month brings a little normality back when the announcement comes home that the young people can dress up for Halloween on the Friday at school – as long as “any props are wipeable”, i.e. a plastic wand is fine, a stuffed black toy cat is not.
Although at almost 17 you might think Harry is too grown up for such trifles, this year he has begged to dress up as a skeleton! He chose his own mask in a supermarket and mum had to make a series of bones out of a mixture of a Halloween display, felt and funky foam and attach it all onto a pair of black joggers and a hoodie.
Let’s hope it strikes the right note! Dem bones, dem bones … the toe bone’s connected to the foot bone … etc etc …
Lots of disability organisations can advise you or help you manage a Self Directed Support budget, including supporting you to choose and employ the right services for you. Your local authority, local carer’s organisation or Citizens Advice Bureau should be able to signpost you to organisations in your area.