Leaving school seems to be a time when families are often left to “grapple around in the dark” for provision. My best advice would be to ask for a Social worker (SW) before they leave school.
As with most things, SW’s are a mixed bag. We were fortunate as our SW was willing to be creative and think outside the box. She did a “needs and well-being assessment” on Heidi and discussed Direct Payments (DP’s). This is money paid to the disabled person or a family member and can be used for a variety of things. We did not know at the time, but DP’s are available to children as well. So if there are things that your child would love to do without you, or you need respite, I recommend applying for DP’s.
According to our SW we used DP’s in an innovative and creative way – so much so that she had to check with her manager that it was allowed.
Remember, I had three other children at home most of the time and my patience is small. When it comes to watching Heidi cook it’s even smaller, so my best intentions of teaching cooking, cleaning, washing and other independence skills very soon went out of the window! So we used DPs to employ someone one morning a week, when she learnt to cook (that was Monday evening’s dinner sorted), food shop, clean and other household tips that I never knew existed!
The SW works out the number of hours the person is entitled to, a bank account just for DP’s is set up and the money is paid by the council to the account. I had to be vetted and shown the system but Penderels Trust do all the contracts, time sheets and pay slips. They also have a Personal Assistant (PA) finder service, where PA’s advertise themselves and also where you can advertise your need for a PA. Penderels work in lots of areas in the country but the SW should know of a service local to you.
Heidi preferred to call her staff “Future Guides”, a name created by Heidi and her peers at an advocacy group – the person “Guides them now and into the future”. Most of the people we have employed have been friends or friends of friends – thankfully all have remained friends. I also employ family members as casual staff members – this is allowed as long as they do not live with the person they are supporting.
Our job description and interview were done by Heidi. The job description focused on what she could do and what she needed help with but also the fun things that she hoped she would do with her Future Guides.
The interviews were hilarious with the most important questions being which football team they supported and if they would help her to attend a Justin Beiber concert.
I have heard of people using DP’s for a variety of activities – respite, shopping and cinema trips, accompanying people to clubs, church, pubs and night clubs – whatever the person wants to go to.
A word of advice; keep the activities updated. Once they can go to the cinema without staff, for example, move on to going to the gym, shops and so on.
Suzie was a Future Guide for a friend; activities ranging from learning to cook vegetarian meals to helping him learn the bus route and going to the gym.
However, this was only one morning a week sorted. Heidi was still very keen to work in a hair salon. The school had suggested the mainstream massive college where Heidi could do an NVQ in hairdressing but thankfully we found a small college with a training salon.
She loved the NVQ courses in hairdressing and customer service and enjoyed getting to know the other students and staff.
On other days she did voluntary work at a charity shop and a café.
There are other options too: mainstream FE college with or without a special education unit, or moving to a residential college where they will learn hands on independent living skills and complete a course which will help them find work at the end.
Thankfully Heidi left school before Education Health Care Plans were introduced, but from other people’s experiences I would suggest starting their after school Plan in about year 10. Then there might be some chance of it being ready when they leave school!