Group or village communities for people with learning disabilities and autistic people are in danger of closing, and new ones cannot be developed due to a one-sentence loophole in guidance from the Care Quality Commission (CQC).
In 2020, the CQC published a framework for the care of autistic people and people with learning disabilities called Right Support, Right Care, Right Culture. It aims to ensure that they are given “the choices, dignity, independence and good access to local communities that most people take for granted”. However, the guidance states that the CQC will not register or favourably rate new campus or congregate settings.
Since publication, a number of group ‘congregate’ communities have therefore been forced to close with people with learning disabilities and autistic people being forced from their homes, against their wishes, and moved them into new, often isolated, and unfamiliar locations.
This is despite a range of evidence showing that village communities can provide a safe living environment for residents while enhancing their quality of life.
A group of relatives have now joined forces to launch a new campaign called Our Life, Our Choice. The campaign calls on the CQC to update the guidance and make it clear that well-managed and regulated group and village communities should be considered equally alongside small urban and rural residential living, supported living, and independent living.
The campaign, which was launched this month at the House of Commons, also says that guidelines should not impose bias against such communities based on their geographical location or size. Guidelines and policy should recognise that for some individuals, these communities offer people’s chosen quality of life.
Campaigners say that policy guidance over the last 20-30 years has rightly led to the closure of institutional NHS hospitals, condemning their ‘campus’ model of care and accommodation. However, due to this misapplication of policy, which equates congregate settings with NHS hospital “campus” provision, many homes of people with learning disabilities and/or autism and their families are being unjustly condemned.
David Wilks, Chair of the campaign, said: “Due to this incorrect use of jargon, in equating congregate settings to the ‘campuses’ of the NHS hospitals, many families have experienced discrimination against their choice in residence. No such discriminative guidance exists for any other regulated residential care communities, such as retirement, dementia, or nursing communities.
“The fundamental purpose of this campaign is to ensure that all people with a learning disability and autistic people have a choice about where they live and the care they receive.
“Since 2006, we believe at least 40 such residential care communities have been forced to close, and in 2020, the CQC made closures easier by asserting it will not support ‘campus’ models of care.
“Although the CQC claims choice is at the forefront of policy and care, their current guidelines are enabling choice of residence to be denied. When challenged, the CQC can provide no evidence whatsoever to justify this denial of choice.”
Village communities are also known as congregate settings, intentional communities, or ‘shared life’ communities. They are often established as small villages or farms in rural areas, but some are in newer developments in towns like Milton Keynes.
They usually have small collections of homes and flats within a single site with shared communal facilities for education, entertainment, and leisure. Many offer meaningful and stimulating employment, such as work on a farm, market garden, or café, as well as activities, crafts, and workshops. Disabled people are seen as equal contributors, not passive users of a service.
Critics of intentional communities tend to view them as cutting people off from wider society and ordinary life and believe they would have a more positive experience living in smaller homes in the community.
David Wilks added: “We are not saying that all village communities are necessarily outstanding because, like any care provision, it depends on whether it is well led and has an appropriate culture in place.
“Also, people with a learning disability and autistic people, just like the general population, do not all wish to live in the same way. Yet, we can all choose where we live. People with severe learning disabilities should have the same rights. This may be a city, a suburb, a village, or a congregate community.
“This full spectrum of choice should be at the centre of guidelines that regulate any current or proposed service for people with severe learning disabilities.”
Our Life, Our Choice is hosting a national conference in April for families, service users, and professionals who are passionate about advocating for equitable care and choice for adults with learning disabilities.
This event has been designed by families with lived experience to explore critical issues surrounding care and accommodation for adults with learning disabilities, including legal frameworks, regulatory policies, and lived experiences.
The conference will be chaired by its patron, Baroness Hilary Cass, and includes speakers such as Professor Luke Clements, Cerebra Professor of Law and Social Justice at the University of Leeds, Paul De Savary, Chief Executive of Home from Home Care, and Humphrey Hawksley formerly BBC China Correspondent, author and broadcaster.
