Do we ever learn from history?
This posting in the news https://www.laingbuissonnews.com/care-markets-content/news/people-stuck-in-modern-day-asylums-due-to-a-lack-of-community-care-settings/ seems to suggest the problem is lack of social care and housing in the community, whereas I’d suggest we’re actually seeing the results of stripping support out of the community services.
We’ve seen the funding grab both from individual support funded by the local authority and the community learning disability teams, originally funded by Government funding to resettle from the 80s onwards. In addition, we’ve seen the increasing disinvestment in local authority social care services in the community in favour of privatisation – which can trump costs by reducing the direct support staff costs and conditions and ensuring that they feed their investors. The reality has been that the cost reductions have been at the expense of social care staff salaries and conditions throughout, despite the expectation if very much increased skills. Most of Commissioning has supposedly expanded choice but in reality has reduced this as it focuses on what appears to be an increasingly cost-driven process supporting quality with paper records. It also adds its own costs into the costs of services to what effect for the people? People can write the right things but how does this get backed up by people’s actual experience in practice?
Authorities don’t invest in social work much beyond ‘assessment’; contracts seem to rely on paper-driven processes whilst CQC inspection supposedly without notice in fact does warn as they also look for a written report ahead of inspection as well as sending letter to staff and families. Families who have sought support too often seem to have then lost their family member to such as ATUs, not received preventive support. So family members have lost trust and the potential whistle blowers we know are not protected even though they are supposed to be. It has certainly not been the authorities processes which have discovered the real truth about what is happening inside the hidden services – we’ve relied on Panorama undercover exposees… The advantage if small community -based housing and support is that the neighbourhood will more likely see/hear and ask questions…. But are we in fact seeing the redevelopment of hidden institutional care?
Our relatively recent past
My history in the North West followed a very positive strategy in Hertfordshire in the late 70’s where as the Manager of a new 3-unit hostel for adults with learning disabilities of 24 people with the range of need, I was allowed to cancel the cook and heated trolleys, remodel the central kitchen into an activities room and change the residential charges to leave food and clothing allowances with the residents to shop together and cater in their units. What they did in each unit was decided by their group in weekly meetings – no matter how disabled they were.
In the North West we saw a very positive regional strategy – the Model District Service – which engaged its local districts in developing a local community teams, then comprising health specialist staff with learning disability social workers. They identified local services who proposed ‘schemes’ that met their requirements – which were largely that they would pay an average ‘dowry’ per person agreed as long as people were being resettled unto ‘ordinary housing’ in the community neighbourhoods. If people were resettled into residential care no NHS funding would be forthcoming. This was enabled by the Government frontloading funding solely for resettlement. At this time too, apart from existing hostels , the local authorities would only allow registration of new residential care if they housed no more than 6 people which would allow people to be more a part of their neighbourhood.
An example from the early 80s
Our ‘scheme’ at Integrate in Preston in the early 80’s was inspired by David Brandon, the magazine’s original editor and partnered with North British Housing who had funding to redevelop old terraced housing in Preston, so enabling local neighbourhoods to accommodate amongst its housing resettled people with learning disabilities in amongst other ordinary housing – in areas offering good access to local shops, and other facilities. Housing ranged from houses for 3 or 4 to flats for 1/2. The original thinking had been based on a ‘core and cluster’ model where people would move into a ‘ core house’ to be ‘trained’ before moving on into other tenancies. The first groups moved into 2 flats adapted from a house before moving on – and we quickly learnt that this model was flawed as it meant people had to make 2 transitions and there was no reason why people couldn’t prepare for the transition by visits from hospital equipping the house before moving in. It would then be the staff who moved out/reduced, not the tenants.
How it was funded
We had block funding from the Health Authority released gradually along with our planned phasing of resettlement. The people we resettled all came from Preston and had been stuck in hospitals for anything from 10 to 30+ years and included a range of need so we started with people we felt could develop skills despite these years of institutionalisation, later supporting people with more complex needs. This enabled us to manage the funding according to need and release some forward as after a while, for example, people managed overnight on-call with a predialled phone number to a near staff flat rather than in their house. Using the funding we also developed community projects with or in the community – furniture renovation, an allotment project, a craft club for the community nearby (which 2 people attended), adult education classes….
So why have we people now going back into institutions?
This article says ‘The average total length of stay in inpatient units is more than five-and-a-half years’; and now we hear that, far from just being concerned to get people back out, ‘admissions remained at around 100 every month in 2019/20’..
With an apparent lack of a realistic strategic plan, apart from failing to get people out, we seem to have a dearth front-loaded investment in the community in properly equipped agencies, let alone in specialist community preventive services.
At the same time we continue to see (and have seen for years) both the squeeze on LA spending and the reduction in the previous investment in community learning disability teams (from the resettlement money which hasn’t been safeguarded as it should have been) AND their increased load in supporting ordinary physical health in the general NHS following the LeDer revelations. So what we’re seeing with the continued admissions to hospitals is community funding presumably now being spent on institutions ie moving the money back, not only into institutions but with privatisation seeing the opportunity for large rewards…into investors pockets.
Many of these hospitalisations hence seem to be the result of a lack of pro-active community services, and so the result of a crisis response. Today, given people we assume being admitted in crisis due to challenges and community services which are developed with known individuals to suit their individual assessed needs, without a strategy which funds support to crisis in the person’s community and any interim community resource, inevitably the only resource ends up being containment in an institution. Once there getting out becomes more difficult as the person’s challenges are likely to escalate
What is needed?
We therefore know that appropriate resettlement services mean bespoke services today, as well as the reinvestment in community support to prevent admissions. We need services that will intervene to support families and others to manage emerging challenges in individuals living in the community and at unsettling times, like transitions from children’s service, education and other situations such as changes in family health/ageing.
There seems to have been no tracking of the consequences of the way services have changed to discover the reasons why people’s situations have broken down. In the article linked above, a plea for more social care and housing seems to fail to recognise that the way services are being developed now is on a more personalised way. I don’t recognise a lack of expertise in social care, as we see it in the community support services that work well developing the lives of people who could well have otherwise ended up in an ATU. We actually have vacancies in supported housing, but it needs a proper matching and process to appropriately use these properly, and there are housing agencies who will develop appropriate housing for identified people. What we don’t have are pre-developed services waiting to be used unless these are other kinds of institutions masquerading as if community services.
What we might better need could be short-term supported housing with skilled staff, maybe attached to community teams which could be used to support a community crisis and prevent hospitalisation – either to help get through the crisis by supporting someone back again with the right support, or working with them towards an appropriate community support service.
Are we seeing tomorrow’s new ‘community’ institutions in flat developments?
One local authority, which isn’t on their own, appears to be trying to solve this by encouraging the development of flat blocks…. which could mean an ‘easy’ answer to moving people out of hospital, so meeting a target?.
However, in a bid to manage shrinking budgets, such developments will reduce their costs on ‘shared’ support (as compared to 3/4 in a house); would mean theoretically that any vacancy can be more quickly reallocated and their plan would be to try to move people from high costs shared living to reduce voids and costs. This although they do not commission housing seemingly ignoring that fact that these are people’s homes with tenancy rights.
Apart from their tenancy rights, people can be too easily ‘persuaded’ to move without properly understanding the consequences (even if they understand they can decide in the face of the authority figures). The power imbalance is of major concern in this. As an example, if their current housing has been their home for some years then they would know their neighbourhood, neighbours, we would hope be comfortable with their co-tenant/s and know their locality – shops, transport etc – maybe even be near to family and friends. Moving may undermine other aspects of their lives therefore and should get full assistance to make their decision.
We also know that some LAs have (mistakenly in my view) agreed to pay for void rents in some houses after a period, when this is a housing cost built into the rent and so should not be part of the LA support costs. Unfortunately this is likely to skew where the LA wants people to live.
Again, had they tracked placements which fail, they might also know that placing someone in the wrong house without testing things out with co-tenants can end up disrupting what had been a settled household – and sadly not all agencies will resist taking someone when pressed. This makes advocacy very important but some local authority contracts have written in that they have to refer people; people can’t refer themselves even if they or their family know their rights to do so. They CAN and should ask the LA to refer them though – but may not know this/dare to challenge.
What might this kind of shared living mean and what could it at best mean?
Am I alone is seeing a strategy which puts people who have high support costs together, could mean agencies expected in reduce costs by having ‘shared’ costs managed by assistive technology and an on-call person? Given mistaken placements in shared housing where, for example, introducing someone whose challenges impede/intrude upon people’s settled home, this doesn’t lead one to have confidence in how such flats would be allocated. One assumes high cost people will include people at high risk due to the extent of their disabilities with others whose high risks may include exploitation/abuse of others….apart from people whose levels of anxiety or additional difficulties due to autism (such as from the notorious noise issues in flats), may divert the ‘shared service’ disproportionately. So are these developments potentially tomorrow’s scandals – and will we see these in the hands of private investors too as their new way to yield profits and manage to keep costs lower than institutions?
Flat developments for young people transitioning from college into community living where they may learn some skills whilst making friendships with people they may want to share with in the future could be really helpful. Another group might be for some older people though one would think they might be better accommodated in general flat developments for other older people in sheltered housing with some specialist support where needed.
Where does it leave us?
In the aftermath of austerity with severe cuts to local authority funding I would suggest having developed the increased use of these ATU’s, we should fear a similar problem following the need for Government to manage the spending in and after the Covid 19. There’s not much evidence that they appreciate that they are paying over the odds for so-called specialist hospital care, when we all know hospitals don’t offer this at all.
The best results are in the community where people are developing their lives, either because they managed to avoid hospitalisation but manifested similar challenges, or have had proper bespoke support developed by some agencies which do this well and which have ensured getting to know the person and their needs and interests – and too often because some parents have refused to accept the continued incarceration of their family member and fought for them.
There continues to be a scandalous lack of joined up planning between LA and NHS which means the LA has an unintended/even unconscious ill-informed motivation not to invest in high cost individual packages needed in the community, whilst the NHS is paying unbelievable sums to incarcerate people for years into inappropriate institutional care which we know makes people’s problems worse.
There is NO cure for learning disability and autism; sectioning under the MHA continues to make this possible despite this – and puts people into ‘care’ which we know is often delivered institutionally. We need people whose challenges have placed them under the MHA to be removed from it unless they actually qualify due to a mental illness which is curable. We also need the reinvestment in community services to ensure specialist support to families and others in the community able to intervene earlier; investment up front in local agencies who already have shown they can support people who challenge effectively in a bespoke way in the community; the inclusion in the investment in housing development by the Government of people who need supported housing as well as social housing. I wonder too whether the Government should also have learnt from Supporting People – one funding source that did work well until its funding was just absorbed into the local authority funds and lost.
Does anyone ever learn from what works and also track what doesn’t work? It might benefit all concerned to do so, and I’m sure would have proved not only cost-effective but also of benefit to individuals and prevented the damage that we know has occurred when people have been placed away in these hospital institutions. Continued cut-backs to save money seem inevitably to cost more in services which damage people, increase their difficulties whilst the people who benefit appear to be private investors.
If we added up the costs could we reinvest in preventive services, social workers able to work with families and knowing the people, and a more person-centred tracking of just what services are doing, rather than in paper-driven ‘quality’ assurance when we know better? Surely a front-loaded funding from government invested in this way (like all those years ago) would save both lives and their contributions, AND resources – and we know what works and what doesn’t!
