People should be supported to live individually, with a friend, or as a couple, argues Choice Support CEO Steven Rose.
As I began thinking about this blog 7 Days of Action published A Trade in People, in partnership with the Centre for Disability Research at Lancaster University. The report identifies that in 2015/16 £477.4 million was spent keeping approximately 2,500 people in NHS ATUs and private hospitals.
It appears that as the government follows through on its commitment to close NHS ATU beds these are being replaced by private hospital placements. No wonder, as a five-year placement in a private hospital typically brings in £1 million in income. I think this demonstrates that there is more than enough money being pumped into the system to support these 2,500 people in community settings while – in my view – saving millions. Yet that 2,500 is proving a stubborn number, hard to reduce. Why is that? There are many reasons, one being that the community-based alternatives are frequently inadequate.
"There is more than enough money being pumped into the system to support these 2,500 people in community settings."
Over the past few decades most people moving from institutional care ended up in residential care or supported living services. Though an improvement, both models are flawed. Residential care offers the recipient few rights and virtually no disposable income. And while supported living offers some rights (a tenancy) and more disposable income, like residential care it is still usually support in a congregate setting, albeit often in smaller numbers. Living in these services means living with other people. In most cases people you didn’t know before, and even if you did, may not have had much in common with. This is far from the cultural norm. With the exceptions of students, the armed forces and religious orders few adults opt to live in groups. Most of us live with a partner, in some kind of family unit, or alone.
"With the exceptions of students, the armed forces and religious orders few adults opt to live in groups."
Imagine yourself living in a supported living service with four other people, each of you with different needs. Then add in the number of support staff in your house over 24 hours. You’d probably be sharing your toilet with 15 -20 people a day. Having friends or family around for an evening would be impossible because you share the kitchen and dining table and living room, and privacy isn’t an option. And yet, when looking for new homes for people in ATUs – almost all of whom are vulnerable, have high support needs and very distressing life histories – we offer them a mode of living that hardly any of us would chose ourselves, and then find that the services break down. Is it any wonder that 2,500 number won’t budge?
For this reason alone supported living, when provided in congregate settings, is fundamentally not fit for purpose. So rather than defaulting to supported living (or residential care) when considering accommodation for people leaving ATUs, I suggest we should be prioritising units of single occupancy and, when appropriate, for a couple or for two close friends.
But that in itself will not solve the problem. In my most recent blog for Learning Disability Today I identified nine key success factors for supporting people to move out of ATUs, based on many years of experience of supporting people to move out of traditional learning disability hospitals and, more recently, ATUs. I’ll close by expanding on just one of them: light touch commissioning or the use of Individual Service Funds or Personal Health Budgets.
"A relationship of mutual trust needs to exist between commissioner and provider."
An Individual Service Fund (ISF) is a mechanism for controlling an individual budget within a provider organisation. It is restricted funding and can be spent flexibly to achieve the best possible outcomes for the person iv. ISFs can only work if a relationship of mutual trust exists between the commissioner and provider. They are proven to:
• reduce costs
• improve quality
• allow flexibility, creativity and spontaneity .
ISFs are not a solution to the ATU crisis, but they do provide a responsive framework, putting the disabled person and their family firmly in control – which is a necessary factor in reducing that 2,500 number. A number, remember, that is not just a statistic, but 2,500 real, vulnerable people, surrounded by 2,500 families, all suffering.
At Choice Support we are setting up support for two people on the ill-fated Transforming Care Programme. One moved from a private hospital about a year ago. The other is due shortly, after nine years of incarceration, to move out of a private hospital. Both are autistic and both will be living in single units of accommodation with customised, flexible support. Excitingly, in both instances the local authorities are keen to pursue ISFs which will significantly improve the chances of these new support packages working for many years to come.
So I say, if you are a commissioner you need to adopt a light touch, learn to trust good providers and not be a slave to procurement regulations. If you are keen to learn more about ISFs look here http://www.centreforwelfarereform.org/search/16850/
i Brown,M. James, E. and Hatton, C (2017) A Trade in People: The inpatient healthcare economy for people with learning disabilities and/or Autism Spectrum Disorder Lancaster: Centre for Disability Research. (A Trade in people Easy read version by Rebecca Fish)
ii (Rose S. J. 2017) Breaking the ATU impasse following Winterbourne View, Learning Disability Today, 22nd May 2017., Pavilion Publishing.
iii (Ellis, R., Sines, D., & Hogard, E. 2015) Better Lives, The Centre for Welfare Reform, Sheffield.
iv (Duffy, S. 2010) The Centre for Welfare Reform, http://www.centreforwelfarereform.org/library/by-az/individual-service-fund1.html Sheffield.