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
Services will be vital this year – parents are on their knees
Harry’s clay crab taking shape for his art project
The story so far…
Harry’s college application has been submitted, and he is gearing up for the last few months of school. The family received funding last summer for a PA to work on independent travel and life skills, but the recruitment process and disclosure checking delays mean the assistant hasn’t been able to start, while the funding only runs until June. Harry also has a grant from ILF Scotland for the family to arrange their own person centred planning.
What a quick month!
We spoke to Harry’s person centred planning consultant and at present there is a limit to what he can do for us due to COVID – we’ve just agreed to touch base here and there to see what the latest is.
We also heard Harry has been allocated to the Local Area Co-ordination Team – what this quite means we are not really sure! But we’ve been told the LAC team will be in touch with us “in due course” to talk about the transition to college and next steps.
On the personal assistant front we finally had some good news! Enable Family Connect have been organising weekly Zoom sessions and at a recent one on Self-Directed Support I asked them if it was worth pushing to get Harry’s PA, especially as the contract ends in June when Harry leaves school. They said a resounding YES and suggested they look at the disclosure form to see if they could iron out any issues for us. They sent it back to us, we resubmitted to Disclosure Scotland and – RESULT!
The updated certificate arrived and we spoke to the PA who is starting next week – the first week in March. So I need to tie up loose ends for the contract and also insurance and the bookkeeping side of things but at least something is FINALLY happening!
Getting the vaccine
In the middle of February I got a call from my GP surgery to come for my COVID vaccine: “We have some spare, so can you come down in the next 10 minutes?” I went straight away and it was pain free and all done very promptly.
However, I did ask the nurse if Harry would be called for the vaccine, giving details of his disabilities, and she advised me some of the vaccines were not approved for use on under 18 year olds so it would be unlikely at this point in time that he would get it. She did say if anything changed the surgery would be in touch and it would have to be a GP that would administer it as he is under 18.
I checked this out with Epilepsy Scotland who were quite surprised as they had been told that in Scotland 16–64 year olds with a neurological condition would be called forward as part of group 6 for the vaccine, but they did say they would see if they could get more information for me. There was also a large publicity campaign (though started in England) for people with intellectual disabilities to be given the vaccine in group 6.
So one more call to the surgery – I’m not trying to skip the queue for Harry – I just want to make sure he’s on the list.
Services under threat
We also heard a very disturbing piece of news that our local authority, who had to cancel the usual summer disability playscheme last summer (understandably due to COVID), are now taking the view that this is a great opportunity to cut costs and not reinstate the playscheme for the future. Tucked away on page 300 or so of a report, only noticed by an eagle-eyed parent who notified as many parents in the area as possible via Facebook that we need to lodge our objections to councillors ASAP or at the committee meeting next week it could be voted through without a by-your-leave.
Just because parents of disabled children or young adults have had to cope during times of crisis it doesn’t mean it was easy or that those services are not vital – if anything, they are even more needed.
The other ‘attack’ seems to be on adult social care budgets – transport provision and provision of the actual day services.
YES we understand COVID caused ALL SORTS OF ISSUES, but disabled young adults DESERVE to live meaningful lives – lives with a purpose, something to get up out of bed for and to go to. Parents and carers are on their knees due to the lack of provision – and it seems the local authority just want to close their eyes to these issues, put their fingers in their ears and sing la-la-la!
Anyway. Rant over…
Information is key
February has been another good information gathering month with a variety of online workshops and seminars – a really useful one was run by Contact Scotland on Preparing for Adult Life. I also attended two other sessions on support and outcome planning, and a parent forum where we could air and share for some peer support.
I also decided to brave watching “Harvey and Me”, the documentary about Katie Price and her son Harvey. I watched most of it with tears streaming down my face. No matter what people’s personal views are about KP she absolutely adores her son and will fight hard for the best for him – just like any parent of a child who is now an adult with disabilities.
It did just go to show that even great fame and fortune don’t make you immune to the issues of transition.
Things to look forward to
The Epilepsy Youth Group have been a godsend for Harry throughout lockdown and are so inventive – they all made handmade pizzas together over Zoom on National Pizza Day and it was a total accident that one of Harry’s ended up heart-shaped! He gave it to me and his stepdad, which was very sweet :o)
The other great thing this month has been that the next level of the art project Harry did last summer has started. This is online, with an hour-long weekly Teams meeting, and a different art project task each week. So far Harry has completed the first task, which was to make an animal out of clay. We visited a local education campus to get ideas of animals to make. He’s going to start his next task – a mural – this weekend.
Now all the snow has gone Harry and I are seriously considering getting our bikes out and trying to go for a wee cycle – I think we both could do with it. We are looking forward to the day when swimming pools and gyms can reopen!
Fingers crossed for the spring.