Start Here – a transitions diary: SEPTEMBER

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

top view of shoes with text saying start here

The story so far…

Last month we met Harry as he returned to his special school to start his final year. As he’s not sure what he’d like to do after he leaves school, and because his options might have changed due to COVID-19, the family have decided to try person centred planning to help Harry explore what might be possible.

Read the first instalment of the diary here

September 2020

The beginning of September brought our first meeting with the consultant who is going to do Harry’s person centred plan that we’re funding with a grant from the Independent Living Fund (https://ilf.scot/transition-fund/person-centred-planning-grant/).

Along with the grant, ILF gave me some contacts for people in our area who offer this kind of very individual planning and we followed those up ourselves.

“I like that man”

We felt reassured that this particular consultant has a lot of experience of working with young adults with disabilities, and you know when you meet someone and you feel you are on the same wavelength. Even Harry said after the meeting: “I like that man – he seems like he wants to listen to me and what I want.”

We had an initial chat so the consultant could get to know Harry and understand his background and situation, and he gave us some things to consider. He mentioned a few organisations to look into that may be able to help with independence and socialisation, and explained it wasn’t a case of “you are entitled to X number of sessions because this is what the grant covers”.  He told us the person centred planning process will be as many sessions as it takes – which really reassured us as a family.

Finally, he asked us to think about assembling a team of people that will be involved in Harry’s person centred planning – people he trusts and feels could make good suggestions, and perhaps even be involved practically in making these things happen.  

We discussed as a family who might be on this team.

Harry asked for me as his mum, my partner (his step-dad), a family friend who has known him for over 5 years and whose own daughter has a diagnosis of autism, and his Epilepsy Group Coordinator – they have all agreed to be on TEAM HARRY! and I’m happy he chose these individuals as I think they will be honest and practical but also encouraging.

A virtual transition meeting

It was all go in terms of transition, as the following week Harry and I attended, “virtually”, a Microsoft Teams Young Persons Planning (Transition) Meeting. I’m really proud that Microsoft Teams now seems to not faze Harry as a method of communication!

At the meeting were his school guidance teacher, a careers adviser, a member from the Local Area Coordination Team (LAC) and the Young Adult Disability Team (YAD), and the school medical team doctor. 

Apart from his guidance teacher these were all new faces not only to Harry but to me as well – and I think he felt a little anxious when confronted with all these people who wanted to talk to him.

We didn’t have any information in advance of who would attend the meeting and what their roles would be – and it would have been good to have that. We also weren’t asked if there was anyone we wanted to invite, but it might have made sense to have the consultant doing our person centred planning there too so everyone supporting Harry is part of the same process.

“Steps to Independence”

We discussed the fact that at present Harry can’t self-travel and any opportunities to do so have been reduced greatly due to COVID-19.  I mentioned my concern that Harry is one of the youngest in his year group (he has a January birthday), so will only be 17 by the time he leaves school in June 2021.

I also raised concerns that although Harry had an ADOS assessment (autism screening) at age 10, it was tricky to unpick how much of his difficulties relate to learning disability, how much to epilepsy, how much to his slight brain damage – and how much is just … Harry?

It was agreed it would be worth flagging for reassessment and the school doctor said she would take this forward and send me the screening questionnaire. She couldn’t tell me how long we would need to wait, but we can get the ball rolling.

The careers adviser told us about a college course called “Steps to Independence”, specifically designed for school leavers from a special school background (or support units in mainstream), and focusing on SCQF level 1-2 courses in a variety of subjects including music, core skills, digital skills, nature and the environment, health and wellbeing, outdoor learning, independent living skills, volunteering and employability skills, art and design, and drama.   

Harry liked the sound of this – especially music, and outdoor learning. He was particularly keen to know if there was any gardening involved as he is a keen gardener at school.  

There was some debate about which team Harry would fall under, Local Area Coordination or Young Adult Disability. This will be decided around Christmas and a representative from one of these teams will be in touch in January to confirm the next steps, in particular around travel training. The careers adviser will apply for the college course on his behalf in January 2021 for an August start.

Harry was quite clingy during the call and at one point his guidance teacher suggested he have a little break if he was happy for me as his mum to represent his views.  Harry nodded and gladly scarpered off to his room with his iPad. I think the school did what they could to make the meeting easier for him by allowing us to take part from home – but I did think it didn’t seem very person centred to let the person it was about leave the meeting rather than try to find ways for him to be more comfortable being involved!

The beginnings of a plan

On the whole both Harry and I thought the meeting had gone quite well and he felt a big weight had been lifted off his shoulders about ‘making choices’ – he feels now there is a bit of a plan, that he will go to college and learn how to be more independent.

I fed back the outcome of the meeting to the consultant doing Harry’s person centred plan and he asked if there was a record of the meeting with clear objectives and timescales. To be honest I only have my notes, so I’ve asked school. They have assured me a record of the meeting and outcomes will come in due course.  He also asked me to set up a meeting with the individuals in TEAM HARRY so we can start to make some decisions – between one thing and another (hospital appointments – planned – and family hospital admissions – not planned!) I’ve not quite managed to organise that yet.  

Thanks to the latest coronavirus restrictions that came into force this week it looks like this meeting will need to be held virtually or else in a coffee shop, which isn’t ideal either way but it just seems to be how things are at the moment.

One thing did strike me, as I’m preparing to start a college course myself and it will  involve physically going into college. It’s going to be important to find out if the college anticipate what method of delivery Harry’s course will take? 

If coronavirus continues well into 2021, which let’s face it looks that way at the moment, then it’s important to know if his course will be on campus or via virtual methods, as if he will be at home that will have a big impact on my plans and ability to work next year.  At present my job is floating in limbo – my employment was on a zero hours contract for the local council, so sadly I can’t see me working any time soon either.

Anyway. On the whole Harry and I are feeling fairly positive about transition at the moment … long may that continue!

Harry’s mum