The Simon Trust is now leading a campaign to raise awareness of the lack of suitable homes for young adults with autism and encouraging families with autistic adults to work with their local council to set up a home for life, using Linden Farm as the blueprint.
If you are a parent of an autistic young person, please have a look at the practical guide found at the link below, which outlines how you might work with other parents and your council to create a really special "home for life" for your son or daughter.
If you are a parent of an autistic young person, please have a look at the practical guide found at the link below, which outlines how you might work with other parents and your council to create a really special "home for life" for your son or daughter.
Since August, when the Guardian and then the BBC published articles about The Simon Trust, we have been overwhelmed by messages from over 300 desperate parents either asking if there are any more places available at Linden Farm (which sadly there are not) or asking if we can help with setting up a new home in their county. So we are now working hard to help people set up Linden Farm "lookalikes" elsewhere.
We have put parents from individual counties in touch with each other, so that they can put together a business case to present to their Social Services that is financially, socially and politically viable. Out-of-county placements for severely autistic young people are not ideal.
County Councils have a Duty of Care, and should be providing more in-county placements. As well as this, parents need their vulnerable sons or daughters near them so that they can see them regularly and help the Care Provider give them a meaningful life.
We have put parents from individual counties in touch with each other, so that they can put together a business case to present to their Social Services that is financially, socially and politically viable. Out-of-county placements for severely autistic young people are not ideal.
County Councils have a Duty of Care, and should be providing more in-county placements. As well as this, parents need their vulnerable sons or daughters near them so that they can see them regularly and help the Care Provider give them a meaningful life.
Below are just some of the many, many sad stories we have received from worried parents
L, aged 19
Was abused in a residential home. The residential home (of 3 years) was closed by Ofsted (due to safeguarding issues) with 24 hours' notice - which made him and 50 other young people with autism, homeless. Spent two years in an emergency respite place with no access to education. Been given someone else’s epilepsy and bipolar disorder medication. Has been served notice in his current placement. Family is far away and want him closer to home.
H, aged 25
A delightful, lively and excitable young man but with the cognitive ability of an 8-month old baby and the physical strength of a challenging, hyperactive 25 year old who can be destructive, stubborn and often awake all night! 24 years without a full night's sleep and exhausting battles with Social Services/NHS have nearly destroyed the family, mentally, physically and financially (especially when all respite was cancelled during C-19). Eventually, Harvey moved to a house with 2:1 carers. However, neighbours soon complained about strange loud noises, repetitive banging and damage. Within months, the landlord served notice and no other suitable, affordable property can be found – so Harvey is being evicted with nowhere suitable to go.
R, aged 15
Family are already exceptionally worried about the lack of suitable provision for him when he turns 19. Robert is currently at a residential school far from his home (although family would love for him to come back into county). However, currently there is NOTHING suitable in his county for young adults like Robert with very complex and challenging needs. Parents would like their county council to create a Linden Farm model type provision.
Was abused in a residential home. The residential home (of 3 years) was closed by Ofsted (due to safeguarding issues) with 24 hours' notice - which made him and 50 other young people with autism, homeless. Spent two years in an emergency respite place with no access to education. Been given someone else’s epilepsy and bipolar disorder medication. Has been served notice in his current placement. Family is far away and want him closer to home.
H, aged 25
A delightful, lively and excitable young man but with the cognitive ability of an 8-month old baby and the physical strength of a challenging, hyperactive 25 year old who can be destructive, stubborn and often awake all night! 24 years without a full night's sleep and exhausting battles with Social Services/NHS have nearly destroyed the family, mentally, physically and financially (especially when all respite was cancelled during C-19). Eventually, Harvey moved to a house with 2:1 carers. However, neighbours soon complained about strange loud noises, repetitive banging and damage. Within months, the landlord served notice and no other suitable, affordable property can be found – so Harvey is being evicted with nowhere suitable to go.
R, aged 15
Family are already exceptionally worried about the lack of suitable provision for him when he turns 19. Robert is currently at a residential school far from his home (although family would love for him to come back into county). However, currently there is NOTHING suitable in his county for young adults like Robert with very complex and challenging needs. Parents would like their county council to create a Linden Farm model type provision.
How can you help?
This is a parent-led campaign and we are looking to reach more worried/concerned parents as their sons and daughters go through the perils and tribulations of transitioning from the relative honeymoon of education.
There is strength in numbers.
As parents in the 26 counties, you can form a strong team and work together. Explain to your Social Services your needs. We will put you in touch with others in your county. You may be able to help with the finances for cash strapped councils e.g. finding charitable money from large Grant Making Trusts or from small village fetes and cake stalls etc. Finding a Developer of 50+ houses who cannot get planning permission - something that a Council could over-rule if there was merit in the plan. It is so important to work with your council, rather than against them.
A significant cost for a new supported living home is in the cost of the land, and perhaps a kind land owner, known to a parent, may be willing to lease some land for xx years at a peppercorn rent. Setting up a charity for a particular county, will give access to the Grant Making Trusts mentioned above, who can be particularly receptive to financially helping good autism causes in your county.
If you know of any severely autistic young adults who are in need of a supported living home as they transition from education, please contact The Simon Trust and we'll add them to the group of parents supporting each other through the process of setting up a 'home for life.'
Alternatively, if you're able to help raise awareness of the campaign, or raise funds to promote it on a larger scale, then please also get in touch.
Or, if you or someone you know owns 2 or 3 acres of land in one of the 26 counties in which we're campaigning and would consider a long lease at a peppercorn rent, we'd also love to speak to you.
There is strength in numbers.
As parents in the 26 counties, you can form a strong team and work together. Explain to your Social Services your needs. We will put you in touch with others in your county. You may be able to help with the finances for cash strapped councils e.g. finding charitable money from large Grant Making Trusts or from small village fetes and cake stalls etc. Finding a Developer of 50+ houses who cannot get planning permission - something that a Council could over-rule if there was merit in the plan. It is so important to work with your council, rather than against them.
A significant cost for a new supported living home is in the cost of the land, and perhaps a kind land owner, known to a parent, may be willing to lease some land for xx years at a peppercorn rent. Setting up a charity for a particular county, will give access to the Grant Making Trusts mentioned above, who can be particularly receptive to financially helping good autism causes in your county.
If you know of any severely autistic young adults who are in need of a supported living home as they transition from education, please contact The Simon Trust and we'll add them to the group of parents supporting each other through the process of setting up a 'home for life.'
Alternatively, if you're able to help raise awareness of the campaign, or raise funds to promote it on a larger scale, then please also get in touch.
Or, if you or someone you know owns 2 or 3 acres of land in one of the 26 counties in which we're campaigning and would consider a long lease at a peppercorn rent, we'd also love to speak to you.
