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Building the right home, new housing guidance from the Transforming Care Programme, supports NHS and local authority commissioners to work with housing providers to expand the housing options available for people with a learning disability, autism or both, who display behaviour that challenges.
The guidance states that around 2,400 people with a learning disability, autism or both will require new living arrangements upon discharge from inpatient care by March 2019. We know that many of these people have ended up in hospitals following disrupted housing and support arrangements, with many experiencing a lack of choice and control over their lives and the environment in which they are living.
Poorly thought-out environments can increase behaviour that challenges and it is clear that just ‘slotting’ people into settings without really understanding the needs of the person, in partnership with them and their families, is unlikely to lead to people living settled and healthy lives in the community.
We need to radically rethink how we offer housing to people with a learning disability, autism or both. The Transforming Care Programme is trying to do this, acknowledging that bespoke housing options based on each individual’s needs and preferences have a positive impact on their health and wellbeing. The guidance also makes a distinction between settled and short-term accommodation, aiming to shift provision towards models that give people security of tenue and housing rights, with a separate contract for their support enabling people to have choice about their social care provider without jeopardising their home.
We know that people with complex needs can live in ordinary houses on ordinary streets. Homes can be designed to work for people in different ways; for example, someone may need radiators to be covered to eliminate the risk of them burning themselves. For others, the location of the home might be key, particularly if the individual has sensory needs. For example, living near busy, noisy roads or bright lights could trigger behaviours that challenge.
There are still too many people who have been in hospital for more than five years. Hospital has effectively become their permanent home. We now need to secure new homes in the community for these people, mindful that the transition from institution to community may require upfront, intensive support.
In Islington we have particular challenges because land is scarce and extremely expensive. However, the council and housing associations are able to develop small sites or refurbish existing buildings. By working closely with social care commissioners, family carers and support providers through the local Partnership Board, we have been able to ensure a fair share of these developments are specifically designed for people with a learning disability, autism or both. Initially these developments can meet with vigorous local opposition, but we have been able to secure strong political support, because so many family carers feel empowered to make the case for decent homes for everyone.
These approaches to housing and support are often expensive and difficult to develop at a time of great uncertainty in the supported housing sector. But we also know that if we get it wrong, it will be costly in the long-term – not just financially, but most importantly for the individual’s health and wellbeing.
Ultimately, the Transforming Care programme is about respecting the rights of people with a learning disability, autism or both. Housing is essential to the transformation we are all seeking and despite the challenges we need to continue to work in creative ways.