Community support for people with a learning disability and/or autistic people can be a complex process. Even more so if people also have a mental health need. Success depends on a concerted effort across multiple agencies working in partnership with the people supported and their families.
However, it can and does work, delivering a good quality of life, often at much lower prices compared to hospital settings. This assertion is supported by a body of policy guidance and literature going back almost three decades.
This report celebrates successful community support. It includes eight stories of people who have previously been placed in hospital settings, often called Assessment and Treatment Units. All are now thriving in community services across England. There is no single model of care and support that explains this success. Each story is different. However, common threads emerge, which echo recommendations and findings in the supporting literature:
- Services must be bespoke and truly person-centred. This entails understanding and acting on what a person wants and needs. Generally, this involves recruiting and training specialist staff teams.
- Agencies should work in partnership. In particular providers should collaborate with clinical and health professionals, and community teams, including occupational and speech and language therapists. This must happen during service planning and once a service commences.
- Appropriate housing and environments are a prerequisite. This might mean specially building property, or considerable adaption of an existing property.
- When people are labelled as having ‘challenging behaviour’ – which includes self-harm and physical or verbal aggression – this should be understood as communication of distress or need. This understanding often comes through a formal adoption of the Positive Behaviour Support approach.
- Family involvement in all aspects of service planning and delivery increases the chance of a good outcome. This usually involves creating support close to the person’s family home.
These stories have been contributed by the provider organisations Avenues, Certitude, Choice Support and Future Directions. Names and locations have been changed to protect people’s identities. The bias toward male stories reflects the current adult population in learning disability and autism hospital settings.
The stories
- Jack, an autistic man of 25, was labelled as “challenging and aggressive” at his residential college when he was younger.
- Andy, 30, is autistic, and has a learning disability and an anxiety disorder.
- Diane, 38, who has a learning disability and a mental health need, spent 16 years living in secure hospital care and tried to take her own life many times.
- George, 56, has moderate learning disabilities and autistic traits.
- Simon, an autistic 26-year-old, spent five years in hospitals under section after his residential school said it could not cope with his needs and behaviours
- Michael, an autistic man of 45, had lived in 10 institutional settings since the age of six – including two hospitals and a residential school.
- Chris, now 54-years-old, became an inpatient in his forties after his two previous residential placements broke down.
- Richard, an autistic 36-year-old, had lived in six different placements by the time he was in his late teens
Conclusion
The stories in this report are not particularly unusual. Each of the providers who contributed could tell more similar stories, as could many other providers across the country. All of those other stories waiting to be told would be unique in one sense. Yet at the same time they would likely follow the pattern evident in the stories in this report.
While there is no formula that – if applied – can guarantee success, there are recurring markers of successful community services. There will be evidence of multi-agency partnership working, during service planning and delivery. All partners will be committed to making things work and be willing to collaborate. This includes embracing positive planned risk taking. Housing will be specially built or adapted, and generally close to a person’s family. That family will be engaged and involved in the service.
Most of all, the person at the heart of it all – the one for whom the service exists – will be listened to. Their behaviour, which has challenged and may continue to do so, will be recognised as a means of communication. And it will be the provider’s job to understand that communication and respond accordingly. Then the service becomes truly person-centred.
The stories in this report demonstrate that community support is:
- sometimes cheaper than support provided through out-of-district hospitals
- far less reliant on medication and restraint to manage behaviour
- delivers a demonstrably better quality of life, by all sorts of measures.
It is true that none of the services described here represent a quick fix. They took time, resources and effort to plan and set up. They take continuing effort to maintain and adapt as people change. What is true, though, is that investing in getting it right at the beginning increases the chances of enduring success. Which means not just a favourable outcome for commissioner and provider, but a person having a fuller, safer, more enjoyable life.
Supporting literature
Services for people with learning disabilities and challenging behaviour or mental health needs (The Mansell Report) Her Majesty’s Stationery Office/Department of Health, 1993, revised 2007
SCIE Knowledge review 20: Commissioning person-centred, cost-effective, local support for people with learning disabilities by Eric Emerson and Janet Robertson. Social Care Institute For Excellence (SCIE) July 2008
There is an alternative Association For Supported Living 2012
Another way: transforming peoples’ lives through good practice in adult social care Voluntary Organisations Disability Group 2011
Transforming Care Programme. NHS England 2015 onwards
Building the right support NHS England, the Local Government Association and the Association of Directors of Adult Social Services 2015
National service model. NHS England, the Local Government Association and the Association of Directors of Adult Social Services 2015
Transforming care – the challenges and solutions. Voluntary Organisations Disability Group 2018
CQC inspections and regulation of Whorlton Hall 2015-2019: an independent review and CQC inspections and regulation of Whorlton Hall: second independent report by Prof Glynis Murphy
The costs and the benefits of Small Support organisations in England