By Steph Palmerone
For over half a century we have been working hard to set up community services for people with learning disabilities or autism so that people don’t need to be in hospital any longer than they need to. But, the latest official statistics showed that there were 2,530 people in specialist hospital beds in England at the end of January, 63% of whom have had a length of stay of over two years.
Of these 2530 people, 1,230 are in a secure setting. The number of people with autism and or a learning disability on prison sentences is unknown but believed to be high.
Should we keep their doors locked and throw away the keys? Or can modern approaches to community support work for people with complex histories and risky behaviours – the people who may have capacity, who can complete all ‘activities of daily living’ and who are able to engage in conversation but who are vulnerable and, if not in prison, diverted into a secure environment because of the risk they are assessed as having to society?
Personalisation not institutionalisation
To make any progress we first have to accept that institutional approaches don’t work; personalised approaches can. Individuals with a learning disability who have broken the law are ill-equipped to understand what they’ve done or why it’s wrong; abusers, for example, are likely to have been abused themselves. They are unlikely to have the experience, empathy or relationship skills to frame their actions. And isolated in prison or in a secure hospital away from society, things are highly unlikely to improve.
Of course, there are some people who require the security and expertise provided by secure services, both in relation to the expertise of the psychiatric system and environmental security. But for many it seems it’s the ‘lack of an alternative’ or a systemic view that people have to move from ‘medium secure’ to ‘low secure’ to ‘locked rehab’ and then to the ‘community’ that keeps them in forensic beds.
Missing eligibility criteria
Our legal systems and commissioning structures do not help. Risky individuals often miss eligibility criteria for social care – the Care Act eligibility criteria do not make reference to prevention of offending and many of the people concerned do not meet the criteria for personal care.
People need personalised support not care but, due to their risk level, they are often in block contract services commissioned by NHS England specialist services or clinical commissioning groups, where the provider is incentivised on occupancy and where the block contract means the money can’t follow the person. Let’s hope this is really changing with the implementation of the Transforming Care agenda to improve support for people with learning disabilities or autism.
And understandably, those with legal responsibility for discharge under the Mental Health Act or multi-agency public protection arrangements (MAPPA) need to know they are discharging someone to a provider that will keep both the individual and the community safe.
When we were closing long stay hospitals in the 80s and 90s we could ‘double fund’ to set new services up whilst keeping the quality in the beds we were closing until they were closed. Short-term double funding gives community-based solutions time: time to get to know the person, to assess them appropriately, to recruit amazing employees, to source an ordinary, safe, house, and to build trust on all sides. I believe double funding is a vital investment in success.
On the subject of people, it’s tough to find staff who can see beyond the behaviour to the person underneath; who are prepared to learn about, and accept, the roots of that behaviour; who can stay connected but distant and who can cope with being tested every day. It is hard, but immensely rewarding, to help an individual develop social responsibility whilst sticking to strong, personalised rules that keep everyone safe.
How local authorities can make a difference
How can local authority commissioners and practitioners make a difference? Here are a few suggestions:
- Planning. Has the local transforming care plan found a viable commissioning solution for people with complex histories and risky behaviours? Try connecting with the six fast-track Transforming Care partnerships (Greater Manchester and Lancashire; Cumbria and the North East; Arden; Herefordshire and Worcestershire; Nottinghamshire; and Hertfordshire) and look at what they are doing. Time is precious but really get to know the person you are working with, think about what is happening to them and whether they really need another two years of locked rehabilitation and whether this will change anything for them?
- Risky behaviours framework. Set up a specific housing with support framework for providers with expertise in tackling risky behaviours and working with people with complex histories – most of whom do not advertise their work. They are out there but you will have to look – great providers won’t have ‘work with people with forensic histories’ all over their websites as they will be wanting to give people a real chance to live in the community with expert support and so want neighbours to get to know them, not be scared. You might consider running a ‘provider forum’ – an event offering providers the chance to present their services to local commissioners. Together, the framework and forum will help you understand the support options open to you for any individual. You can then talk to health colleagues about commissioning individual support packages or using personal budgets. The framework should favour providers who have access to housing brokerage rather than residential beds.
- Outcomes-based contracts. Develop outcome-based contracts, recognise that you might be double funding in the short term and ask the provider to work with you on reducing support hours on an agreed basis. If they know what they are doing they should be working to really minimize the risky behaviours with specific expertise in this area. Over time a person should no longer need support for their risky behaviours, though they may still need help as anyone else with a learning disability and or autism. At this point the expert provider should be replaced. But this will be a long-term process. Developing trusted relationships and new behaviours takes time.
- Advocate change You can advocate for all those people who have had care and treatment reviews (CTR) and whose discharge is only being prevented because money is not moving from NHS England to local commissioning. Taking this further, push for a ‘trim point’ approach with providers of NHS-commissioned forensic services, where the cost per bed reduces if people are still in hospital when their CTR says they do not need to be.
- It’s all about relationships. We need to work together. People with complex histories and risky behaviours will push, will test out and will be risky. This really is partnership working, with the person, family, friends NHS, probation, police, housing and the provider. Keep working on what good looks like together, communicate all the time, keep assessing risk together, understand and respect the legal frameworks we all work in and recognise different perspectives are important.
- Share your experience. If you have found an approach that works, share it. And if you face an apparently insuperable barrier, talk about it. Others may have the answer you need.
Steph Palmerone is managing director of Waymarks, which provides community support to people with mild to moderate learning disabilities and/or autism with complex histories and risk behaviours.