Why is housing for autistic people a failure?

May 3, 2022

A new Commons Health and Social Care Select Committee report has highlighted the drastic need for specialist housing and care accommodation for people with autism and learning disabilities. The report outlines the conditions experienced by patients at Assessment and Treatments Units (ATUs), describing them as an “affront to a civilised society.” There is a strong focus on the belief and categorisation of neurodivergence as an illness, rather than it being a “fundamental part of the character” of a person with autism, leading to spiralling mistreatment and continued detention.

MPs have called for a ban on new long term admissions to ATUs, where the average length of stay is six years. The report confirms that there is a failure to provide patients with the opportunity to “live fulfilled lives” while in these facilities; being subject to inhumane conditions and treatment including abusive restrictive practices.

The committee, chaired by former Health Secretary Jeremy Hunt, describes the failure to address the poor treatment of people with autism and learning disabilities as a “scandal.” However, it was under his tenure that the NHS saw the most vicious cuts in its history. NHS “Sustainability and Transformation Plans” (STPs)offered “improved care in the community” to make up for lost hospital beds, but NHS statistics show that numbers of community nurses continued to decline under Hunt, alongside a dramatic drop in the number of community health visitors since 2017.

The real problem then is whether this promise of a new community-based, “person-centred” approach will come to fruition. Closing current facilities that are not fit-for-purpose can only work if a viable alternative is provided for those that require this care. The dialogue surrounding these facilities is eerily reminiscent of the austerity era, where services were publicly disparaged, only for them to be cut without replacement.

Planning Practice Guidance describes a healthy place as ‘ one which supports and promotes healthy behaviours and environments and a reduction in health inequalities for people of all ages. It will provide the community with opportunities to improve their physical and mental health and support community engagement and wellbeing. It is a place which is inclusive and promotes social interaction’.  However, the housing needs of a whole group of people within our communities are not currently met within local planning policies.  They have fallen through the cracks with little joined-up thinking between health authorities, who are desperately aware of the needs of individuals, and local planning authorities whose focus is mainly on general and affordable housing needs.  

The essence of this debate is not how we treat people in institutions but how we tackle the root cause of the problem. The malpractice described in the recent report could be avoided entirely if there was sufficient specialist housing and care accommodation provided for people with autism. I have some experience working in housing for adults with autism and there has been no discernible improvement in the system since many of these institutions began to close. 

Whilst working on a housing project in Rochdale for adults with autism, I came across a wealth of health reports by various national and regional bodies as well as charities; all citing the need for person-centred housing solutions.  Housing of this nature is bespoke and can sometimes require a quieter and greener location to best support the needs and wellbeing of residents. This in itself is an obstacle to finding the right site as it will often involve the development of a greenfield or Green Belt site. An often-exceptional supporting planning case must then be made to demonstrate that the benefits of development will outweigh the planning policies which ordinarily result in planning permission being refused. It all adds to the cost, delay, uncertainty and frustration of families who have to fight on behalf of their dependents at every turn and all stages from childhood to adulthood. With better coordination across NHS Trusts and local planning authorities, the right homes could be built in the right place, but the need should be identified and planned for in Local Plans in the first instance.  

The importance of safe, stable housing for people with autism and learning disabilities cannot be stressed enough. Many people with autism and learning disabilities rely heavily on routine and structure, becoming stressed and anxious when that is disrupted. It is also vital that people with autism and learning disabilities have a strong support network, whether that is family or carers. This network can help to manage emotional and sensory triggers compassionately and effectively. This balance can often be unsettled when patients are admitted to unfamiliar facilities, not in their local area. The financial cost of this is not only placed on the patient and their family but the local authority, whose focus is then torn away from their local area paying for care in another authority. 

Going forward there must be a stronger emphasis on tackling the problem at its root by providing safe, affordable housing for people with autism and learning disabilities. There should be a focus on gathering data to assess the need at the local level, so people can receive the right care they need in a home where they feel safe.  It is a basic human right for us all.