Sally and Peter Lawrence are no strangers to struggle. Raising autistic and learning disabled son Simon was a constant battle to get the services he needed.
When Simon was eight years old the couple took legal action to get him a place at Prior’s Court, in West Berkshire. The charity supports autistic youngsters up to the age of 25. But their most recent fight saw the couple, from Surrey, battling for a victory that had implications far beyond their own son.
When Simon, 30, who also has epilepsy, reached adulthood and the Lawrences began to ponder where he would live they feared a lack of local options would inevitably mean an out-of-county placement.
So the Lawrences set about trying to persuade Surrey County Council to set up their own supported living facilities. After a lengthy campaign the couple managed to convince Surrey to build Linden Farm.
The 10-bed supported living property was set up after the Lawrences first persuaded Surrey to buy a six-acre site in Alfold, near Cranleigh, for the building. The couple raised £250,000 themselves and set up charity The Simon Trust in an effort to get the project going.
Now, spurred on by the Lawrences’ success, other families all over the UK are urging councils to build more supported living properties.
Peter says around 100 families all over the UK have contacted him and are hoping to convince their councils to follow Surrey’s lead.
He added, “All these parents that have come on — they are desperate. They want somewhere for their son or daughter to go to. They’re hoping that places are going to be ready made for them, but it’s not as easy as that because they just don’t exist. It’s only the go-getters out of those 100 that are actually going to get past first post.”
He said almost all these families are considering whether they want to continue, because it involves a huge commitment of time and effort to win council backing for new supported living accommodation.
Peter believes the key to getting Surrey on side was convincing them it is more economical to have local accommodation than rely on out-of-county placements.
He says five families in West Sussex, Hampshire, Berkshire, Buckinghamshire and Aberdeen are at a more advanced stage in persuading their councils to follow Surrey’s example.
Peter von Schmidt wants a supported living property in Buckinghamshire for his autistic 24-year-old son so he remains within easy reach. His son, who cannot talk and struggles with challenging behaviour, is approaching the age when he will leave education and come under adult social services.
In an email von Schmidt wrote, “Our concern is that there is such a lack of suitable adult provision for this community within our county, Bucks. The physiological impairments of this cohort are really quite unique and challenging, and an unsuitable setting can be highly distressing for the resident and care-giver alike, not just sometimes but on a minute-by-minute basis (often 24 hours).”
He said his son has spent many years travelling out of county for specialist care in Dorset and Berkshire.
Von Schmidt told Buckinghamshire Council they ought to use Linden Farm as a “blueprint” to improve their services.
He says Buckinghamshire has agreed to review the proposal. The father says he wants “much-needed in-county appropriate living space for young adults with severe autism”.
Recent research by the Learning Disability and Autism Housing Network and Housing LIN showed there will be a shortfall of between 27,000 to 34,500 supported living properties by 2037 in England.
The report, Supported housing for people with learning disabilities and autistic people in England, shows that there are between 35,000-37,500 people with learning disabilities and autistic people living in supported housing.
The findings suggested supported housing plays an increasingly critical role in enabling people with a learning disability and autistic people to live independently at the heart of their communities.
Up to 23% of this population live in mainstream housing with a care/support package, 15% are living in residential/ nursing care settings, and 37% live with family and friends.
Speaking when the report was published last July, Ian Copeman, business director at Housing LIN, said, “Good quality supported housing can provide a lifetime of independence for people to live in the heart of their communities.
“This report shows the impact, value and need for new homes, and sets out the changes required to ensure we continue to meet this need for quality supported housing.”
Over 80% of supported living properties are provided by housing associations. The National Housing Federation (NHF), which represents housing associations, blames cuts in government funding for the shortage of properties.
Earlier this year an NHF report concluded the sector has the capacity to offer further support, but is being hindered by the lack of government investment.
But the government says its supported housing improvement programme has given £20m over three years to 26 councils to help them improve quality and value for money.
A spokesperson for the Department for Levelling Up, Housing & Communities said they recognise supported housing “plays a crucial role” in enabling autistic people and those with a learning disability to live independently in their communities.
Regulations introduced as part of the new Supported Housing Bill will raise standards, added the spokesperson.
Introduced by Bob Blackman, MP for Harrow East, the new law came into force on August 29 and aims to crack down on rogue private landlords charging excessive rents for supported housing while providing little or no care.
Hopefully, more projects like Linden Farm will get funding in the coming years to help combat all these current challenges facing families, with Buckinghamshire Council perhaps taking the next step forward with the Von Schmidt family.
