Really the battle started when he was just 4 years old when we opted out of special school provision and did a home education programme.
We then had another battle to get him into a home based volunteer programme focused on helping to connect with someone who has Autism, called Sunrise or Options in America and had a tribunal and solicitor who specialised in this field.
We then had a battle when we brought him back from America, to be able to get him into a specialist school that could support him with the challenges his autism presented whilst at the same time educating him at an appropriate intellectual standard. We found a teacher that would be ideal but the education board said that they had to advertise the post, after their recruitment process they didn’t choose the teacher of our choice.
They chose another teacher who presented well during the recruitment process but after she had experienced one of Josh’s meltdowns it was apparent she was not fit for the job, could not handle it and eventually left.
We then found a teacher who taught him at home in the afternoon whilst the rest of the time we had young men of the same age enabling Josh to go out into the community. This was in place for a few years and then we progressed to a teacher from one of the our local schools establishing a relationship with Josh at home, progressing to Josh then spending some time at the back of the classroom in school (unofficially) Once we could see this was working we approached the headmaster for official approval and he had no reason to say no.
But it was the integration in the class that we were looking for and to be able to be with others, this did not work really well but Josh did make a friend who he kept in touch with for years even after school. Also being at school gave structure to his day so Josh knew what to expect and when things would be happening but he did not get anything else from being there, we are not sure what other fringe benefits it might have had but we know that Josh is receptive to his environment and is very intelligent so it is entirely possible that he absorbed much more from that setting than we were aware of at the time.
After attending school Josh did spend some time at Bolton University and to our amazement during one visit he stayed at the university for one hour and 45 minutes and stayed in the classroom with other people. He also contributed by typing out his communications which were well accepted by the class. Unfortunately after a few sessions the content became inappropriate and it was not suitable for him. At this stage his lecturer suggested Josh could do the studies from home. Which Josh did and he received a B grade for his studies.
When we started to think about adult life and a good future for Josh, which included establishing Josh living independently and the first thing we did was speak to the social worker for guidance. We came to understand that we needed a two prong approach; we needed to find him a place to live and negotiate a package of support (this would be building on the package he already had from when he had moved back from America). We then wanted to extend the budget from 9 – 4pm to 24 /7 which would take forever
We wanted Josh to have a bungalow. Having experienced life in a four storey and seeing that when he jumped the whole house shuck, causing the pictures on our neighbours wall to fall we realised a single floor dwelling was needed.
We went to housing associations who told us that they dealt mainly with the elderly or large families, so we started to search wider and contacted Jayne Knight who was initially working for an organisation called Lets for Life.
We also went to see My Safe Homes in Coventry which is a mortgage scheme which did not seem appropriate for us.
We then went to Salford City Council and went to a meeting with them accompanied by Jayne Knight. We had zero expectations because we had contacted them previously and were told that they were not in a position to help us. However unbeknown to us Salford had contacted a Jewish HAT independently and much to our amazement had got a positive response.
We went to see the bungalow in an ideal position which ticked all our boxes but it was very expensive and needed a lot of renovation. The Housing Association agreed to buy this specifically for him and Jayne forged a great relationship with the chairman of the Housing Association.
They were prepared to do the structural work but told us that we were going to be responsible for providing everything else.
We struggled to find someone who could guide us regarding our support package both needs and costs, having found three specialist social workers to be useless we were guided to Liz Leach and Imagineer who saved the day. The highly recommended solicitor who had been involved up to that point proved to be negative and lacking in ambition and described our requests as an unrealistic ‘wish list’. We dispensed with her services forthwith.
With Liz’s input we finally, after two appeals, secured a reasonable budget and it was a bonus to have the presence of our local MP for the final meeting
Imagineer helped us to secure generous grants from unlikely sources to purchase many necessary items for the bungalow.
We then needed to increase the staff from the existing three team members to a full team of eight which we were fortunately able to do from within our local community by both advertisements and word of mouth.
In order to accomplish the transition from the family home to the nearby bungalow we go to the bungalow for a few short visits, then go for longer periods, until eventually her was here all the time,
Liz then told us about Circles of Support and helped us to set one up in 2019. With her input we also drew up a Person Centred Plan and our team leader liaised with Liz on a regular basis for advice and guidance in management, e.g. how best to do individual staff supervision, drawing up contracts, policies and procedures and troubleshooting.
We had a review with the social worker today and she said she is signing us off and she is happy with how things are being managed, they will re-evaluate the package when an increase is due but we do not need to be assessed every year. The Court of Protection who had been legally bound to review us annually have said that they are so impressed with our management they no longer need to visit.
We need to make good use of the budget to meet the life Josh wants and we are actively working on strategies to enable him to overcome the difficulties which prevent him from going out, in particular pain and anxiety.
It is good to have opportunities for the team to remain engaged and it is a challenge to keep everybody motivated and on task at times when Josh is wanting to be left alone and there is a lot of down time.
We could not have managed without Liz’s input and Jaynes expertise.
Without Self Directed Support it would have been impossible to plan for his long term future when we are no longer able to play such an active role, it would be very easy to see only the challenges that Josh’s behaviour can present and not recognise that it is a communication and his way of coping with extreme pain
In order to help him and people like Josh to lead the best possible life support has to be person centred and delivered by people who truly understand Autism and have a loving and mutual respecting relationship with the person they are helping.
Parents needs to be ambitious, persistent and reach out to those people with expertise and experience and not be afraid to ask for help.
Story captured: March 2022