https://healthmedia.blog.gov.uk/2016/12/20/how-the-25-million-learning-disability-housing-fund-will-help-my-family/

How the £25 million learning disability housing fund will help my family

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Karen speaks to a local journalist about the funding being awarded to her area.

Today the Department of Health announced the 52 successful bidders for a £25m housing and technology fund to improve the lives of people with learning disabilities.

Gloucestershire council successfully bid for £1.8m to be used for three projects.

Karen, parent carer representative for Carers Gloucestershire, and mother to Oliver, speaks about how the funding will transform her life and her son’s:

I couldn’t be more delighted about the most recent award of capital funding to develop some supported living in Fairford. It truly is dream come true for us.

Karen talked about when her son was first diagnosed with Sanfilippo type C, a rare progressive condition leading to various health issues such as behavioural problems, and a shortened life expectancy of around 10-20 years:

In the consultant’s office we were told to anticipate that our active little boy would deteriorate over the coming years and that he was unlikely to live past fourteen. We were told the journey ahead would involve him becoming hyperactive, aggressive, that his learning disability would get more and more severe and that eventually he would be in a wheelchair and develop some serious health needs.

 

And actually, he’s now eighteen, and he’s very much still here and is doing brilliantly. He has slowed down and the disease has progressed, but nothing like to the extent predicted and his quality of life is still very good.

 

But for all this good news – and it is such good news, living day to day with Oliver isn’t easy. He has no sense of danger and we need to make sure that our front door is always locked with a combination lock, the rooms in our house are safe and trips out need careful planning.

 

My family are all from Fairford.  The vast majority of people who know and love our son live there.

 

As we started to explore housing options for Oliver’s future we realised that there was nothing available locally.

 

Much as we need the help, having Oliver move out of Fairford just wasn’t an option for us for several reasons - he has some autistic traits which means he finds change difficult and moving out of Fairford would mean uprooting him from all the people who know and love him.

 

Moving to another town would therefore be very likely to distress him and it wouldn’t be fair.

 

I run a support group for parent carers in the South Cotswolds and many of the families who attend share that view. So when the opportunity to bid for some money which would let us change that came along, we leaped at it. The whole agenda for people with learning disabilities is about community and inclusion and we wanted that to be relevant to people with learning disabilities in Fairford as much as anywhere else.

 

We got the news about the funding the night of the support group Christmas meal. I think all the families spent the evening in total shock. We didn’t think this would be possible, and suddenly it’s happening. A whole new future is becoming imaginable.

 

So thank you very much Minister – and also to all the people who helped to write the bid. You’ve made a lot of people very happy and we will do everything it takes to make this development an absolute success for Fairford and for our children.

 

Join the conversation about the successful projects @depthealthpress, using the hashtag #placetocallhome

Read our news story about the fund here.