Have we become a neglectful society?

Norman Lamb, the Care Minister, gave an interesting interview in the Telegraph over the Christmas period, which was given the rather unfortunate headline, “Neglectful Britons blamed for forcing elderly into care homes”. This picked up on the Minister’s view that we have become a “neglectful society” and that we need to rebuild “neighbourly resilience”, without which, he was quoted as saying, pensioners lead dismal, lonely lives.

Mr Lamb was given a hard time for this by Sarah Ditum, writing in the Guardian, who said that “The government has some cheek to say we’re not caring enough” and pointed out that more unpaid family carers are caring for more hours per week than ever; a huge contribution which Ditum argues the coalition is undermining with cuts to public services.

Ditum is right that, as social care services are being ever more tightly rationed, whilst the impact upon the NHS is starting to show, the impact upon family carers is often hidden, yet very real.

However, I don’t read the Minister’s comments as being about unpaid family caring. His suggestion that we have become a “neglectful society” is strikingly reminiscent of John McKnight’s suggestion, that we (in his case, the ‘we’ being US citizens in the 1990s) have become “a careless society”, in his book of the same name. McKnight was one of the founders of ‘Asset Based Community Development’, an idea which Lamb’s predecessor, Paul Burstow, talked about approvingly in the run-up to launching the social care White Paper. ‘Asset-based’ or ‘strength-based’ approaches start with the premise that seeing only people’s needs and vulnerabilities (their ‘deficits’) will lead to services being designed to impose outside ‘expertise’ at the expense of individual, family and community resilience. In other words, poorly designed, if well-intentioned, social services can become part of the problem, ‘colonising’ communities and ordinary human relationships and leaving citizens who have, in McKnight’s words, “grown doubtful of their common capacity to care”.

So McKnight was not arguing that people had stopped caring about each other, but that they had stopped seeing the active support of those around them as their role, instead believing that only the state was qualified to provide support. It’s a powerful – and by virtue of its power, a dangerous –  argument, but one which needs serious consideration.

A small-state fanatic could see it as an excuse to cut services in the naïve belief that people will start supporting each other as soon as the state ‘gets out of the way’. McKnight was instead arguing for services which were more led by people and which worked alongside and supported their relationships, rather than supplanting them. You only have to look at the isolation of thousands of older people or the disempowerment of many people with learning disabilities living in ‘service settings’, to realise that even well-funded traditional services cannot address isolation, in all its many forms.

I met Mr Lamb a number of times in the Autumn, including to discuss asset

Countdown to the White paper

Despite stories in the press about delays to the White Paper, as far as we can tell, it remains on track for publishing in ‘the Spring’. ‘Spring’ in civil service speak lasts well into June, of course. We’ve got a fair idea of what’s going to be in it, because the government involved lots of people from the sector in drafting the early ideas and strongly welcomed the ideas we came up with around prevention and the help which people and communities need to tackle problems like isolation, which services cannot fix.

As well as setting the tone for the whole sector for years to come, a good White Paper needs one or two eye-catching initiatives, which capture the imagination as well as the spirit of the policy changes. The impact of complex policy changes can be difficult to grasp by those not immersed in how social care legislation and regulations work, but who nevertheless have strong views on what good care, support and inclusion looks like. Sometimes relatively small-scale changes can exemplify the broader intentions.

So whilst I could take a good guess at the range of policy shifts we’re likely to see in the White Paper and I’m not expecting to be surprised by its ‘narrative’, here’s a rather specific idea which I’ve no reason to think is anywhere in it, but which I think should be considered:

Close as many as humanly possible of the remaining 100+ ‘hospitals’ for people with learning disabilities.

These are the institutions, often ostensibly used for assessment of people considered ‘challenging’, which were made infamous by the BBC Panorama expose of Winterbourne View. The recent CQC inspections of these institutions which followed that exposé  are not finding that all are havens for abuse –far from it. There will be many dedicated and skilled staff working in such places – I used to be a care assistant in a residential home for people considered challenging and I came across no abusive staff and plenty of entirely lovely people working long hours for little money.

But CQC has been finding a significant number of places which are completely unacceptable: buildings which smell of urine; services which lack the proper safeguarding procedure and protection for people’s rights; people with no care plans; worryingly lax use of restraint. The reason such places should not exist is not, however, that they are places where abuse is more likely, although I believe that the risk of abuse increases when people are managed as part of a large group and spend little time outside of an institution. The reason such places should not exist is that, even if they are run brilliantly, a 20 or 30 bed ‘hospital’ in a non-residential area with locked doors and the conflicting support needs of large numbers of ‘challenging’ people, may be able to deliver warmth, food and shelter, but can never deliver the basic quality of life which we take as read: real relationships with people who aren’t paid to be with you. The chance to be a part of a community. ‘Ordinary’ home and family life. You’re much more likely to learn the skills and attitudes you need to take part in ordinary life when you’re living in an ordinary family home. Although the stated purpose of care offered in these ‘hospitals’ is to assess people’s needs, in reality, some people spend months or even years living there because no alternative has been found.

But Shared Lives and other community-based forms of support are in almost every area and have a track record of supporting people considered challenging (see Alan’s story). They are not even more expensive than these institutions – commissioners often make huge savings through helping someone switch to Shared Lives. The heavy lifting of closing long stay institutions has already been done for us. There aren’t many left: let’s make this White Paper an opportunity to close that chapter of history for good.

Three questions

The closure of day centres  – and other ‘building-based’ services – continues apace. I subscribe to a popular email group run by the Foundation for People with Learning Disabilities (http://www.choiceforum.org) and there has been a spate of messages recently from family carers and professionals raising concerns about this. There’s even a report of an area opening up a new day centre for people with complex needs, having closed the old one and decided that alternatives weren’t working.

The debate about day centres quickly becomes ideological and couched in black and white terms. One side believes that the alternative to day centres is casting people with learning disabilities out into a solitary existence in a ‘community’ that turns out to be at best elusive, and at worst, openly hostile. The other side believes that day centres are evidence that segregation and institutionalisation are far from the memories they should be.

I’m reminded of the anecdote a former colleague told me of a visit by an ageing member of the House of Lords to the day centre for older people my colleague was running. It became clear that Lord X might himself be in the early stages of dementia and also that he was having a very enjoyable time, chatting with people his own age. My colleague said to Lady X, as she was thanking him for his hospitality, that his Lordship would be welcome to drop in and use the facilities whenever he wished. “That’s awfully kind of you, but my husband is already a member of the most exclusive day centre in the world”.

Most of us belong, or would like to belong, to clubs and groups of one kind or another. The difference being, that most people have choices about what to belong to and to opt out of. Clubs and groups which want us as – usually paying  – members, have to design themselves around our changing wishes and needs. We often get to contribute as well as to recieve something. And we get the option of spending time on our own as well, when we wish.

I believe that the painful and often angry debates about building-based services could nearly always be avoided if, instead of asking “Should this day centre close?”, decision-makers always asked everyone concerned these three questions:

Time to ditch the RAS?

Giving individuals the option to control the money which is spent on meeting their needs feels to me to be self-evidently a good thing. There is great – and massively undervalued – expertise in the social work profession, but social care is not like, say, heart surgery, where I would probably be happy for most decisions about my care to be taken by the experts. Social care is more ambitious than heart surgery. It doesn’t just want to help your body function, it wants to be a route you can take towards living a fulfilling life. A surgeon knows a lot more than I do about how my heart works, but even the most skilled social worker will only ever have a rough idea of what makes me tick.

So if putting me in charge of the social care resources attached to me makes sense, and it’s also a given that budgets are never going to be infinite, what is the simplest, clearest, fairest way of allocating a budget to an individual, which recognises that there have to be some limits on how much people can spend?

The current process in most areas is a little like this:

1.  The individual is assessed to see if they are eligible for state support.
2.  They are also assessed to see if they are eligible for that support to be provided free, or if the state will charge them some or all of the cost, according to their income and savings.
3.  A system (a Resource Allocation System or RAS) is used to give people a rough estimate of how much money they are likely to be entitled to spend on social care. This estimate is proportional to their level of need.
4.  The individual is helped to plan to spend that money. The RAS is only (in theory) used to produce an estimate, so it might transpire that the individual needs more, or less, than the estimated amount, in order to meet their social care needs. When this happens, the amount allocated to them can be changed to ensure they can afford to purchase the support they need, and that they are not given more money than they need.

Let’s assume that that process happens fairly and transparently and that the professionals involved don’t take short cuts, such as treating the initial budget estimate as the final figure, or giving you a limited list of the services you can purchase, rather than helping you to think creatively about the best intervention to meet your particular needs and wishes. Even done properly, this process still contains three major problems.

Care: industrial scale or cottage industry?

There are, we are often reminded, 30,000 residents in Southern Cross’s care homes. There is an argument about to what extent it would affect those residents if Southern Cross’s approach to funding its expansion, which relied heavily upon property speculation during the boom, ultimately led to its demise as a company.

Some people say it wouldn’t make any difference to residents – if a care home is viable it will simply be sold on to another provider. The Association of Directors of Adult Social Services have emphasised the need for councils to continue sending residents to Southern Cross homes to keep the company afloat.

But if it makes no difference to residents whether or not the company stays afloat, then why does it matter if it continues to have enough ‘customers’? Whereas, if Southern Cross going bankrupt will make a difference to them, then it cannot be in an individual’s interests to be “sent” to one of their homes. 

Individuals are not commodities, to be traded by councils and care providers, even in the interests of what might be considered the greater good. Councils are under an obligation to individually assess older people and to support them to make the best choices about care for them. A blanket recommendation to push people towards a care provider which may not be able to offer stability is unacceptable.

I think it’s hard to maintain the argument that residents have nothing to fear from Southern Cross going bankrupt. In order to attempt to stay afloat, the company has just cut 3,000 front line caring jobs. In other words, here we have yet another situation in which rash decisions made in order to maximise profits result in negative consequences for people who had no part in those decisions. It was of course, those residents’ money (or in the case of those whose care was state-funded, taxpayers’ money), which was hived off in the good years into the pockets of bosses and shareholders.

The Southern Cross crisis, coupled with the Winterbourne abuse scandal uncovered by BBC’s Panorama, should initiate a pause for thought about the relative risks and benefits of industrial scale care and support

Dragons return to West Wales

Helen and Tony Woodman are carers with West Wales Adult Placement (Shared Lives) Scheme. Thanks to the work of the Scheme and funding from the council, the people who visit Helen and Tony’s home in the peaceful Cych Valley, Pembrokeshire have the opportunity to create works of art that are sited in prominent positions around Carmarthenshire. These include The Boars marking the gateway into Ammanford, The Drover Sculptures in a busy shopping area in Carmarthen and two Dragons, one welcoming visitors to Carmarthen and the other guarding the gateway to Newcastle Emlyn Castle, which legend says was the place the last dragon of Wales was slain. This latest project was the work of service users, Craig Jenkins and Wyn Havard from Pembrokeshire and Jean John and Rhian Evans from Carmarthenshire.

In addition to creating the dragon, all involved in the project have had the opportunity to make something that they have designed and made for themselves.  Rhian says “I drew out the design for a door stop and I will make that next.  I like coming here to work with Tony.  He is fun to work with.” Another participant said, “I have enjoyed seeing the dragon grow each week and also lunch break when we can all have a chat around the table.”  Craig is now beginning a work training placement in a woodwork company.

Gwenda Thomas, Deputy Minister at the Welsh Assembly Government came to admire the dragon and met everybody involved. She said, “I have been extremely impressed by what I have learnt and I am very humbled by the work of the carers.”   

Pound shop provides recession-proof employment

People often say that it is much harder to achieve genuine employment for people with learning disabilities in times of recession and high unemployment. One Shared Lives carer has turned the recession to his advantage in setting up a recession-proof business which aims to provide real employment opportunities.

Mitch Morgan is an experienced market trader and entrepreneur who became a Shared Lives carer, supporting adults with learning disabilities in Shropshire. Mitch says, “I realised how hard it was for these adults to get work placements so I had the idea of setting up a pound shop business on the market because it is the easiest type of business to run with no need to give change or take cheques or credit cards,” Mitch said.

Mitch Morgan has set up a pound shop business on Wellington Market in Telford, Shropshire, which is providing work placements for six adults. The shop was opened by the Mayor and has proved popular with the people who work there, other traders and the general public. Mencap have also been very supportive. Mitch says, “The most important part is social interaction and breaking down barriers. We encourage people to talk to customers. In a big supermarket, you don’t talk to the customers, but here we do.”

Mitch and employee in the Pound Shop

Are parents with learning disabilities set up to fail?

NAAPS CEO Alex Fox used his latest Community Care column to tackle what he called the ‘hidden national scandal’ of support services for parents with learning disabilities. Whilst documents such as Think Local, Act Personal set out a vision in which people who have support needs are entitled to pursue ordinary lives and enjoy equal rights, choice and control can be in short supply when people with learning disabilities want to have children.

Whilst children’s services can be swift to identify risk, neither adults’ nor children’s services are well equipped to assess that risk without prejudice nor to provide timely, accessible support and buck-passing is common. Parents with learning disabilities are routinely asked to demonstrate their parenting competence in the alien and stressful environment of an assessment centre and given information which they cannot read or understand.

One parent was taught to bottle-feed her baby, but not about weaning, with the result that nutrition and neglect concerns arose later on: she was still bottle feeding exactly as she’d been instructed.

Traditional services are usually deemed too expensive to provide the out of hours support which would allay children’s services’ safeguarding concerns. Parents with mild learning disabilities may wrongly be deemed ineligible for adults’ services. Shared Lives has been shown to have the potential to end that catch-22 situation, because it is an affordable

Alternatives to day centre dementia care

The Guardian today features a depressing report from the Alzheimer’s Society on care for people with dementia: “Sub-standard care will mean 50,000 people with dementia will be forced into care homes earlier than necessary, racking up a preventable monthly bill of £70m to the taxpayer.” Whilst most people with the condition prefer to live and be cared for at home, there is inadequate help for everyday tasks such as shopping, washing and dressing, leaving family carers unable to cope.

There are day centres for people with dementia, but it was common when I was working with unpaid family carers to hear that the person with dementia found the day centre environment so stressful and came back so disorientated, that the experience was not a break for anyone concerned.

A number of Shared Lives schemes are offering an alternative to day centres.

ASA Lincolnshire’s At Home Day Resource for people with dementia, established with carer’s grant funding, provides support from 10am – 3pm, delivered in the Shared Lives Carer’s home and local community. The ASA matching process ensures the participants are compatible, with one carer supporting up to three people at a time, depending on people’s needs. Some people use it to maintain skills such as cooking, gardening, or simply eating together and using cutlery. Isolated older people welcome the manageable social experience in a consistent, familiar setting.

The service also provides a break for family carers

A pub solves a drinking problem….

In a blog last week, I talked about the need for us to find new ways of connecting people and suggested that the Big Society idea of street parties and re-creating the village in today’s city wasn’t going to work. I suggested we need to build communities helping people who are like-minded to find each other. In his comment, ‘Liam’ asked: “Where would that leave people with disabilities, or Alzheimer’s Disease, or others who do even speak perhaps?” Liam is interested in communities and isolation: I’m grateful to him for quoting Jean Vanier, the founder of the L’Arche communities, who describes isolation as ‘a taste of death’. That’s a powerful image.

Liam is right, I think, that the concept of “like-mindedness”, like “community” itself, can be exclusive as well as inclusive. Can you have belonging, without having people who don’t belong? Is a shared space only defined by its walls? One of the appeals of the work which our members does to me is that it makes links in unlikely places. People who have been assumed not to have anything in common with anyone, and to be “challenging”, turn out to have plenty in common with others, when they find the right place to call home.

Alison and Mark run a pub in a seaside town. Neil, who has a learning disability, spent a lot of time drinking in pubs around the town, and gradually spent more and more time at Alison’s pub. Alison and Mark were concerned about his drinking, his behaviour and increasingly, his safety. He even began sleeping rough on their doorstep.