14.05.20

Our guest blog this week is from an amazing Mum who worked tirelessly to create a family-led supported living service for her disabled son. She hopes her story can help others do the same.

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 around 8 years ago when Ryan was approaching 16, when we turned our attention to how he might be supported to have a happy life beyond education. A close friend who also has an autistic son and I decided to begin researching and set about visiting many supported living provisions, both locally and further afield, who catered for young people as complex as ours.

We were not impressed with anything that we saw! How can it be ok, we asked ourselves, after all the years of input in Special Education that everything just stopped. Where was the structure, the continued learning, visual timetables etc that were so vital? These things are all so important to have a positive influence on behaviours too. We wanted more for our children, a meaningful life.

We decided the only way to have some influence on that would be to create something, in partnership with a like-minded care provider. We wanted the house to be in the vicinity of Brighton and Hove, with all the opportunities that provides. So a great house was bought (this could just as easily be achieved by renting from a social Landlord). The task then was how to open and fulfil criteria that meant our funding Authority, in our case East Sussex County Council, would agree to fund the care. What followed next was far more complicated then I was expecting!

Initially, we approached Brighton & Hove Adult Social Care to say ‘here is this amazing house, will you help us to open it?’ and of course the motivator being that there would be spaces for them to potentially have for other adults in a similar situation.

I must say the commissioners back then were very receptive to the project and many months of meetings followed. The council have their list of preferred providers and so we were invited to be involved with the tendering process.  All seemed to be going well. Jointly with the Council, we settled on a care provider who seemed to fit what was needed and importantly would be open to the families being fully involved in shaping what we wanted. However, after many more months, it became clear the care provider was not going to deliver what had been promised. This happened around the same time as the latest round of savage cuts to the council and at the last moment, the project failed before it could open.

We were devastated.

We eventually found a setting for Ryan, it was not in the ideal location – an hour’s drive from the family home. However the ethos there, because of an excellent manager, made our minds up that it would be good. As we all know, it is all about the people with our ‘children’.

The house was kept and for the next few years was let to students.

Then around 18 months ago events happened, we lost our lovely manager at Ryan’s house, the service suffered for it and Ryan sustained a serious injury due to  management failure. Also, as Ryan would be leaving College it became obvious that the rural location meant that finding activities to fill his days, that he could access, were just not available.

So, us and a group of like-minded families got together once again, could we dare hope that the dream was not lost?

This time around we did not involve the Council. Ryan’s previous manager had gone in to form his own company. He needed a house and we needed the right care provider – a perfect fit! What then followed was another rocky road, as his company was not yet on East Sussex’s preferred provider’s list they made very heavy weather of agreeing that Ryan could move to the house. We understand that, of course, councils must make sure they are spending taxpayers money appropriately and placing people safely however, the process was so stressful that it nearly broke me and I’m a tough one! Councils do place people ‘off-list’, as long as certain criteria are met.

The biggest and worst realisation of all was that now Ryan is no longer a child, we as parents have absolutely no legal rights over where he lives amongst other things. Yes, we are involved but ultimately adult social care have those rights unless you have a Deputyship in Health and Welfare, which is another massive subject – too big for this blog. We had to attend a best interest meeting to decide if it was in Ryan’s best interest to move, thinking that would be decided at that meeting – it wasn’t. It was decided that it was in his best interests to leave his current provider, but they still did not agree to the new house. The Council insisted on, in effect, tendering him out to providers of their choice before deciding. Many of those providers declined or couldn’t meet his needs. More months followed of stress and strain.

Finally, it was agreed that Ryan could move into ‘our’ house, with our chosen care provider. The process was long, extremely stressful and had so many hoops to jump through. But it was worth every second of it. The house has been open for 7 months now and 3 other residents have joined with Ryan. It has a strong PBS (positive behaviour support) approach which is important to all the families. We all work together to make it the best it can be. The residents are a family. The families are each other’s support network.

It can be done. The dream became a reality.

A note if you would like to know how the finances of supported living work:

1. Each resident has their own tenancy agreement – perfectly possible, even without mental capacity.
2. They each receive their own means-tested benefits, which pays their rent and their living expenses.
3. Supported living properties are exempt from Council Tax.
4. The cost to the funding authority is therefore just the persons care costs.

While we were having difficulty getting agreement in our choice of care provider, we attempted requesting personal budgets for our sons and daughters, the revised Care Act 2014 states that everyone is entitled to their own budget to ‘spend on the care they choose’. However, that proved impossible to get from East Sussex County Council.

Good Luck to everyone, and I am very happy to help with any questions that you may have, please comment below. We hope that our project can become a flagship for others.