Parents and carers of 13 young adults with Special Educational Needs and Disabilities (SEND) met at The Vench Adventure Playground in Lockleaze, Bristol, on Wednesday 12th June, along with Bristol’s newly elected Green Councillor James Crawford, to discuss the challenges and solutions to finding safe, local, housing for their children as they reach an age when moving from family homes into their own becomes appropriate.
The meeting was organised and chaired by the team at SendaWelcome (SaW) the Bristol-based CIC working to create an inclusive community where people with learning disabilities are valued and celebrated for their differences. SaW reached out to their network of Bristol parents to gather feedback on ideas for independent-living housing models for their children. Local Green Party’s Councillors were invited to share their thoughts in line with the Party’s policy focus on tackling the housing and adult social care crisis in Bristol.
Julie Matthews, co-founder of SaW, along with her partner Jeff, led the meeting. They arrived first and I caught up with Julie as she set up the room. She explained that for her and Jeff, solving the housing crisis for young adults with SEND is hugely important to them personally. Their son Elijah is now 20 years old and is currently a resident at a National Star College on weekdays (pictured). Finding Elijah a permanent home after college, where he can continue using the supported, independent living skills he’s learning, is important for them all, but they have explored the options for his future independence with growing dismay.
“The current situation is that the Local Authority (LA) assesses each person for a care package to support their day-to-day living and then they are allocated whatever housing provision is available. The problem for us is that this could be anywhere. It’s
very important for us to find somewhere local for Elijah, so he can live in the familiar neighbourhood he grew up in, and we can be at hand to support him.”
Julie explains that there have been increasing issues nationwide with the quality and consistency of the care packages supplied to young adults.
“The LAs recognise that the current model which combines housing and care leads to problems if the care package is inadequate. If the young person needs to reappraise their care, they also risk losing their home. We want Elijah to have stability and ideally some kind of ownership of his home so that he has a right to stay.”
Such incidents of care packages failing have led LAs to look for ways to decouple housing from care for young adults, meaning that the door has been opened for parents to explore new models of how independent living might work for their young people.
Julie explains; “There’s a national movement called “Homes for Life” where different parent-led models are being trialled. We have brought our community of parents of young adults with SEND together to explore how we could work collaboratively and with the existing council systems to create secure co-owned local housing and care.”
The meeting is held at the Adventure Playground to coincide with the SaW-organised weekly youth club for 16-24-year-olds with SEND. Lucy and Karl, part of the SaW network of parents, arrive for the meeting with Molly, their 21-year-old daughter who has come for the youth club.
Molly set off before them but opted to walk while they cycled and is incredulous that they have beaten her here. Lucy tells me that Molly, “is ready and excited to be able to move to her own place, but it needs to be local and with some care and support.”
Because Lucy and Karl don’t want Molly to be simply, “put somewhere,“ they have joined Jeff and Julie in leading this campaign with a deep dive into funding options, and they come prepared to share this knowledge with the room.
The meeting kicks off with introductions, as we go around the table people explain why they have come:
Green Party Councillor James Crawfords is here, “to understand the issue better from a parents’ point of view and see what support they can offer when dealing with the council as it moves forward.”
Simon and Kate are looking ahead for their daughter Bea, she is currently in full-time education but the need to find her an independent home will come soon.
Sarah’s son Billy (22) has just come out of a temporary Bristol City Council-run supported Independent Living scheme at the Brislington Centre. Sarah now wants to help him find a follow-on residential setting.
Nicola’s daughter Maya (23) has recently moved back home after having a bad experience with her council-provided house and care package.
Nicola tells us that; “The care provider was simply not adequate; they lacked the experience of providing the structure Maya needed so she just didn’t feel supported enough. She had a very difficult time and has returned home; the whole experience has really set her back.”
Another co-founder of SaW, Katarina, shares her view;
“Our young adults deserve to have choices. They deserve to have familiarity and community in the same way everyone else has these rights. It is essential to their health, their well-being, and often their safety.
“It’s a fundamental human right to have the support of a community, it’s a false economy to place our children in situations where they don’t have that; where well-being decreases the need for care increases – that’s true of everyone.
It’s not just for their benefit that they stay in this community either, the whole community benefits from their presence. A diverse society is a rich one.”
As the stories unfold it becomes clear that parents and carers want more say in the decision-making process around housing and care – and for their young people to be involved in those choices.
The agenda begins with Julie and Jeff outlining their journey in finding Elijah, a “Home for Life.”
Julie explains that the SaW team met with Joe Wheeler, the current Specialist Accommodation Framework Manager at Bristol Council to discuss options. Joe’s role includes the development of novel housing delivery frameworks for Bristol’s statutory homeless services and specialist housing solutions people who need Adult Social Care or Healthcare services.
“Joe suggested two models for housing which we’ll share today, but we want to acknowledge that these ideas are not set in stone, we are in a process of research and discovery. We don’t have all the answers by any means.”
The first model Julie describes involves buying a property and raising funds to convert it for shared living, including a space for each young adult, a communal living area, a sleeping space for support staff, a garden and parking.
There are several funding options for this; firstly, shared ownership where a registered social care provider landlord and young person co-own the property.
“People with SEND have access to specialised interest-free mortgages of up to £100K, a registered social care provider owns the rest and rents it back to them. The young person then has to pay rent and pay back the mortgage through their benefits.” Jeff explains.
The other option is that the young person or a cohort of families buy and convert the property and lease it back to the registered social care provider, allowing them to recover costs through the lease. Though Julie acknowledges that, “the mechanism for this is not yet clear.”
The second model is to find land independently, or be given it by the LA, and then fund the building of modular units on the land, including a communal living area and space for carers. Each family buys the modular unit and designs it for their child’s specification, the unit is then theirs to sell in the future.
Jeff notes; “There is currently no precedent for funding being granted to buy land and add independent family-owned modular pods, but The Council say that they are trying to make this possible, and there is the potential of funding from Homes England.”
Julie brings the discussion back to the council meeting with Joe Wheeler, reporting: “What Joe wanted to know is how we would fund the projects: his first question was, ‘What are your means?’ But, of course, that’s the question we had for him!
The other thing he wanted was profiles of the type of person that the new model could support. If the new model can provide homes for people who can’t manage well in “typical supported housing,” then a different model could ease financial pressure on the council by taking young people out of the current care home system.”
In short, any new model will be popular with the council if it shows a provable financial benefit to them.
Jeff continues, “The council is also keen on an, ‘own front door policy’, which means each young person has their own contained space. This arrangement makes it easier to pass the property onto the next resident as the spaces are divided up into separable units, but it’s problematic for us as parents as it potentially overlooks our children’s need for communal space, live-in care accommodation and the chance to
build cohesive communities in which people of similar needs live together. If units can be passed on, new people will be coming and going – which is disruptive to communities.
Julie highlights that, “Finding a suitable peer group of young people who all have similar needs and interests is very important. Particularly for shared living. One of our meeting’s aims today, in fact, is to ascertain if there is a cohort of young people locally who could live together.”
Lucy and Karl take their turn to explain their research. They have looked into adapting the Tiny House Community Bristol model, in which communities buy and manage sites, ‘for the creation of culturally and ecologically regenerative settlements for those in housing need.’
Karl is hopeful about this prospect because Bristol Council have previously released land in Sea Mills for this kind of project.
Linden Farm, in Alfold, Surrey, is another example of where land has been bought and developed for a specific community, this time for 10 adults with profound autism. Organised through The Simon Trust, a charity that supports adults with autism, the Farm is built on 2.5 acres of land purchased for this purpose by Surrey County Council. The residents are supported by Choice Care, a provider chosen by the council and approved by parents.
Lucy adds, “The only potential downside is that the council still owns the land and the housing and chooses the care provider. The Trust has a stake in that they raised the money to add extra facilities, like the activity barn, but the parents don’t actually own the properties. It’s not a guaranteed “Home for Life” unless you have a stake in it.”
There’s a co-housing scheme in Leeds called LILAC, a Low Impact Living Affordable Community, which is not specifically for people with SEND but is interesting because of its pioneering financial model: a ‘Mutual Home Ownership Society’, which ensures permanent affordability. Though Karl points out that, “this model has not yet been achieved in a new build, only in renovated properties.”
Other parents and carers around the table contribute ideas. Simon mentions the Brislington Centre for Independent Living, a residential, independent living training facility for students with additional needs who are currently enrolled on a full-time course with Bristol City College.
Sarah, whose son Billy has just left the Brislington Centre explains that the care and support there have been brilliant but it is not long-term and is only accessible to a limited number of people with specific needs: “It’s part of the college and people need an EHCP to get in, plus they can only have 12-13 students there over two
years. They learn all these amazing independent living skills then there is nowhere for them to move into to use them. They have to return home.”
There are other suggestions: converting industrial building or using existing care home facilities for elderly residents which are currently empty due to lack of demand, all of which will need to be explored further.
As the youth club ends and before parents leave to find their children, Julie closes the meeting with a reminder that this is just the beginning, and although there are limitations due to council policy and parents’ capacity, this challenge is an opportunity. SENDaWelcome community could lead the way in co-creating a better solution for housing and care for young adults with SEND, with a new model that is scalable and replicable around the UK.
A final call for action for the SENDaWelcome network is to keep a lookout for properties and funding opportunities while SaW continues conversations with the council to help find solutions to the housing and adult social care crisis.
If you know of any housing models, land or existing properties for development or funding opportunities please contact Julie Matthews at [email protected].