We are in danger of repeating our mistakes, says Rosemary Trustam. We are now seeing institutions disguised as community housing and private equity companies that call themselves care companies. Do we ever learn? she asks.
As each week passes we continue to hear heartrending stories about Assessment and Treatment Units (ATUs). How have we arrived at this and why have we not learned from history – or, indeed, decided what really matters to us?
In the early 1980s the North West Regional Health Authority presented a strong policy on resettlement – the strategy was only to pay resettlement where it was into ordinary living, in tenancies in the community. Leaders were trained in values based on the principles of normalisation, which were then cascaded to support and community service staff. Funding was available to develop skills and community services and local joint training teams and challenging behaviour teams were established. There were integrated community teams with social work and health, OT, physio and speech therapy and a children’s service, as well as well-resourced psychology support. An extra support team (for challenging behaviours) had qualified case workers and hands-on support workers, who could move into a situation in a family or service to buy time with extra support during or to prevent a crisis.
Accordingly it was rare that anyone needed a time-out facility let alone an ATU. We were committed to close hospitals and develop skills in the community.
In the 2000s we had a government lead in Valuing People but despite this community services have eroded and new institutional services have sprung up. It wasn’t until the BBC Panorama programme blew the whistle on the 2011 Winterbourne View scandal that the scale of this began to be revealed.
I have to wonder what good the Partnership Boards have done if there was no tracking of people excluded from local services, nor any review into what local deficiencies might have caused this to happen. Whilst there is no doubt that Valuing People and Valuing People Now did help develop the voice of people with learning disabilities and carers, what it clearly didn’t do is establish the rights of people to proper services.
Since then community resources have been regularly stripped out so that today our district only has two or three community nurses with a very long waiting list for help so is without the capacity to step in when crises occur. One could speculate that it was its very success that led to its reduction, but it is more likely because learning disabilities is too often a junior player in community services of larger trusts, often without a seat on the board. Dare I say there is also shrinking knowledge and expertise in commissioning?
Where has the money gone?
This money has generally gone to meet other pressures in health but there has also been a growth in ‘re-institutionalisation’ with new business opportunities for health trusts and private agency hospital services which waste scandalous amounts of money in high fees.
Maximising profits for investors does not look like a clever response to the austerity push. Whilst desperate commissioners look for cheaper solutions and seek to bring people back from ATUs, they’re likely to persuade themselves that pretty buildings give people a place in the community. However, such models are unlikely to do more than enable people to see the community out of their windows.
Self-advocates with learning disabilities in the North West region have expressed concern about ‘clustered housing’. One example cited was nine flats for people with learning disabilities, many of whom had wheelchairs, supported by two staff between them all. This can hardly be meeting people’s individual needs but will be cheaper than separate living in the community. We know that alongside the austerity cuts and the increased minimum wage, local authorities have suddenly found themselves liable to pay the minimum hourly rate for sleep-overs in supported tenancies. This escalation in sleep-over costs is making commissioners look for savings, at the risk of undermining people’s more individual lives in the community.
The shared costs of ‘clustered housing’ are an obvious temptation for commissioners and a tempting new business opportunity for companies focused on costs and profit rather than person-centred solutions for people. Perhaps developers really don’t know that such initiatives (which can certainly give good returns) do not present the conditions for inclusive community living. Current commissioners will be tempted unless providers of integrity can find some better solutions for reducing costs – solutions like assistive technology or sharing some response support in localities across providers. A good example is Imagine, Act & Succeed (IAS)’s thoughtful development of twelve flats, half for people with learning disabilities and half for ordinary community tenancies. (Community Living, 29, 2). Without such initiatives, we will be developing another excluding housing solution.
New institutions?
Are we seeing the building of new institutions fooling us by offering tenancies and nice housing in the community? How ‘in’ the community are blocks of flats in scale? How much does this actually set people apart? An example of this sort of business opportunity is seen in the partnership of three organisations: HP Villages, a developer, with Inclusion providing supported housing management and Lifeways offering support services. Inclusion was set up by individuals with experience in care commissioning, and care home and small hospital construction and management. Running care homes and private hospitals does not suggest experience in community living or ordinary housing. Lifeways is a large provider owned by Omers Private Equity, an arm of one of Canada’s largest pension funds, so is also driven by investment. HP Villages was only established in 2011 and became a joint venture in 2012 with Community Solutions, part of Morgan Sindall investments.
Forgive me for thinking that a primary motivation is about profit. HP Villages and their partners are involved in major project development of units of accommodation for people with learning disabilities across the North, Midlands and South East.
People already have barriers to being accepted because of their difference – such barriers can be lowered by being known as individuals in their communities and seen as such. In the early days of resettlement, people were aware of the likelihood of community discrimination resulting in exclusion so we had to think carefully about how housing was grouped and how people interacted with their local resources.
Can you imagine how this could encourage inclusion when 20 people being supported in their local community end up in the same local pub or shop? These large clusters of up to 20 apartments for people with additional needs will clearly have a community impact, as large numbers of people with staff support will have a conspicuous presence, even assuming they have sufficient support to go out individually. One can imagine what the reality might be if people are either grouped together to go out or multi-staffed to manage behaviours. People’s assumptions will also be that everyone in these flats has behavioural challenges if there is just one incidence.
My plea is for developers and commissioners to think about this and look at what is possible, like the IAS model, which still remains person-centred and values-driven, offering real inclusion but sharing costs.
