17.11.21

In 2020, an inspirational Sussex Mum kindly shared her story of creating a family-led supported living service for her disabled son. More than 18 months later, Julie kindly talked to us about what they have learnt in that time, all against the backdrop of the coronavirus pandemic.

Readers of the Renaissance Legal blog may remember my earlier story of setting up a parent led supported living service in my previous blog.

For those who do not, please allow me to share a little bit of background about our journey so far, and what led us to move to a new house in January this year.

How it began

My 23-year-old son, Ryan, has complex needs. He has a very rare genetic disorder called Floating Harbor Syndrome, which causes severe learning disabilities, speech impairment and associated behaviours. He is also epileptic. He was in Special Education until he was 22 years old.

Our journey began nearly ten years ago when Ryan was approaching 16, when we started to consider as a family how he might be supported to have a happy life beyond education. Together with a close friend of the family, who also has an autistic son, I decided to begin researching and set about visiting a number of different supported living provisions, both locally and further afield, who catered for young people with complex needs like Ryan’s.

We were not impressed with any environment or offering that we saw. We were alarmed and concerned that after all the years of input in Special Education,  everything could just stop. There was seemingly nothing out there with the structure, the continued learning, the carefully designed environment that we knew were so vital for our children. These things are all so important to have a positive influence on behaviours too. We wanted more for our children, a meaningful, enriched life.

What did we do?

We realised that the only chance of achieving our vision, was to work with a like-minded care provider to create something rather unique, where parents are welcomed to have actual input and design something more bespoke for their child.

As I shared in my original blog we achieved just that, with the house opening in 2019, but the path was far from smooth. After a very long and stressful time, adult social care agreed to our proposed preference, but that in itself was complex. The harsh reality is that parental choice counts for very little once our sons and daughters are no longer legally children, even though they may lack mental capacity, as is the case with my son and the other residents living in the house.

We discovered the value of obtaining Deputyship in Health & Welfare, if applicable, in this sort of scenario. Put simply, this gives parents the right to be the decision maker on behalf of their young person as far as is practicable – otherwise it is the Funding Authority who carry the role of ultimate decision makers.

18 months on, how is it all going?

It’s fair to say that there have been many, many curveballs and things that we were not expecting.

Ryan, and 3 other residents moved into the House which had long been identified in Hove, in October 2019. In many ways all was well, however what had not fully been obvious in the busy process of getting agreement, and moving in 4 very complex young people, was the suitability of the building in terms of its construction for this purpose.

The building was a large 4 storey Victorian end of terrace. Two of our residents in particular can make noise, given their autism. What followed was an unpleasant time with neighbours in the adjoining building, which had been converted into flats. Efforts were made to work with the neighbours, to hear their concerns.  One of the measures taken was extensive sound proofing, but to no avail, noise was still an issue.

I had fought for Ryan to live in Brighton & Hove, although we live in neighbouring East Sussex, because his school/college placements had been there.  I always felt Brighton was more inclusive, more welcoming of people who were ‘different’, but I am afraid to say we had a different experience with our immediate set of neighbours which caused a great deal of stress and upset.

Another emotional issue, which I had not expected was differences of opinion and approach in some areas with another parent. This remains something that we are working on as a parent cohort, but a vital source of reassurance is that all our shares of ownership are reflected legally in a declaration of trust. This is invaluable, as it protects Ryan’s interests, and therefore security in the house. It’s been a somewhat emotional lesson to learn, but we have found as parents that we don’t have to always be friends to ensure the continued success of the project!

Other, unforeseen things also came into play….the Pandemic! Where I had wanted the social opportunities on offer in a busy city for Ryan, we were (along with everyone else) constrained by lockdowns and restrictions – and after that, conversely, I soon realised it was too busy, in this new world we find ourselves in.

Therefore, after much soul searching, not to mention the sheer physical upheaval of it all for our young people (and our amazing care team) we decided to find another house.

This house needed to be in a less busy location and absolutely had to be detached. I am very pleased to say that the perfect house was found and in January of this year, the residents and all the staff relocated to Telscombe Cliffs. It really feels that our dream really is now a reality.

As well as our house manager, we also have a manager dedicated to Learning support. Our children have individual, ongoing learning and skill plans. We as parents are fully involved with this, and are updated monthly on what has been achieved and what is still being worked towards.

At this point I must emphasise that none of this would have been possible without a brilliant social care provider who was willing to embrace a shared vision with families, and had the same values themselves. My biggest piece of advice for anyone thinking about embarking on a similar journey is to have clear outcomes in mind and work towards them using partnership and passion. Be creative and think outside the box to make your dream happen.

There have been some rather large, unforeseen bumps along the way this last 18 months but we now have a secure home, which just gets better and better. I hope to be able to share another update in 2022, detailing what Ryan and his fellow residents are getting out of this wonderful environment.