Changes to service models: are they in the ‘best interests’ of service users – or the authorities’? A parent/provider speaks out

In the scramble for local authorities to manage their budgets, learning disability services have become easy prey to the knife with authorities persuading themselves that cuts to services and changes to ‘models’ are in the ‘best interests’ of service users. The problem is that whilst they may purport to ask people – sadly late in the day – these changes have not been driven by the aggregation of individual assessed needs but by cost savings.

Two North West local authorities: Lancashire, a large county council and Rochdale, a smaller borough council, are examples of what’s happening more widely. They are two of the hardest hit authorities, faced with massive cuts to their budgets.

There has been been a long hard fight for the rights of people with learning disabilities to live nothing more than an ordinary life in their local community. This was, and remains, a core value at the heart of providers in the North West who developed their services driven by these values from the early 1980s onwards. They will not respond to requests from social workers from many miles away to ‘place’ people with them as they are committed to their locality. They are seen as likely targets, as costs are higher supporting people with highly complex learning disabilities in ways that celebrate their differences, varying needs and personal attributes, supporting them to have lives determined by themselves, often in partnership with families.

Both local authorities have taken the recent advice of the Secretary of State for Health when he spoke of the need for ‘imaginative thinking’ and ‘efficiency improvements’ at local level which would not only make savings but actually enhance people’s experiences. Both authorities have new schemes which claim to fit the bill. Goodness – why haven’t we thought of all this before?

Are we expecting ‘ambitious’ outcomes, as Lancashire claimed recently, from a series of three halted ‘frameworks’ for ‘preferred provider’ status? No, not really. People with learning disabilities are just like the rest of us – they want a life, not an outcome. Some are very ambitious; others are not. They or their family advocates want to express who their ‘preferred provider’ is, not the local authority, and they will measure a provider’s success by their degree of satisfaction with them, not by a succession of outcomes assessed as being suitably ambitious by a third party who hardly knows them. The idea is that people will gain competence and therefore reduce their dependency on paid support. Great idea but it’s doubtful this approach will solve the authorities’ budget woes.

What is more worrying about Lancashire’s latest attempt to cut the cost of learning disability support is that the proposed exercise completely cuts out the people who receive the support. It’s simply a procurement exercise. The proposal is that once providers have been accepted onto the ‘framework’ as a ‘preferred provider’ and hence meet the quality standards, then they will take part in ‘mini-competitions’ to compete for the ‘work’ (work meaning someone’s day to day care and support). This applies to every ‘package of care’  – not the person receiving it? They will be judged on the basis of a split of 60% quality and 40% cost without any minimum expected rate below which they will not go. To participate in the mini-competition, providers have already had to demonstrate their quality in order to get on the framework so the contest is evidently, and simply, about the price.

Providers will be able to work in up to five county zones. Hence if a provider works in all ten currently, they will not retain all their current work. Whilst this may not apply to many locally-based providers who operate across two or three districts, or zones, what about those people forced to change their support provider in spite of their satisfaction or even attachment to their current provider? Imagine how this will also feel to other providers forced to take part in mini-competitions to compete for work with people who are not their first choice.

People with learning disabilities do not cope well with change. The relationship between a person with a disability and the provider of their care should not be underestimated; whether that’s a personal assistant or provider. It takes time and the building of trust to feel confident about handing over a loved one to a person, school or care provider. You can read CQC reports, speak to other family members, visit the provider, even interview for a PA and do all of your research but even those of us seemingly in ‘the know’ have to take a leap of faith. Only time and experience actually confirms that your decision is the right one. Success takes a colossal amount of continued joined-up working between the supported person, families, the provider and professionals. The balances are finely tuned. Change any of these and the apple cart is upset. Support that enables development is also based on relationships – not only with the immediate support worker but with the agency and its leadership which is critical to developing and embedding the culture and values of the service and its staff. It is evident that Lancashire County Council has overlooked all this, not least the emotional content and security in personal care. The people themselves feel this most and are of course the most affected by change, particularly change that is out of their control. Research shows that major changes even within our control, such as moving house or changing jobs, are a major cause of stress. How much more stressful would this be?

One way of avoiding these shenanigans would be to take a personal budget but take-up of these by people with learning disabilities has been mixed. Many are unable to instruct a broker so only those who understand the system and articulate families benefit. One family came to our agency after a series of scrapes with employment law. They reported they had had no uplift in fee or any review of their loved one’s care package for many years. They were forced to support their loved one when PAs were absent regardless of their work and young family commitments. In another case, an intelligent, articulate ex-chief executive wrote about why he wouldn’t touch a personal budget for his loved one with the proverbial barge pole.

Currently there has been no consultation with self-advocates or their families in Lancashire on this particular framework. Some of the documentation sent to providers inferred that people supported had already been consulted but it transpired that this had been two years previously on the first framework!  This was raised in the web-based and other feedback which appears to have prompted a hastily organised last minute consultation offering the chance to return an easy read questionnaire, mainly just asking if people agreed with what they are doing. One person from a local forum said: “We pay for the service. We should be asked what we want”. Many people supported do contribute quite significantly to the cost of their care. We must hope that the drive for efficiency savings doesn’t override really listening to the people most affected.

Meanwhile, in Greater Manchester, Rochdale are keeping us on our toes. Their approach is equally creative. Needing to save £1.4m they are ‘consulting’ on a re-modelling of support to people with learning disabilities over 55. The suggestion is that these people will give up their shared supported tenancy, as the model of sharing doesn’t work and they would prefer to live alone. The Council would like to be proactive in approaching people in their 50s, as people with learning disabilities do not do well in more mainstream older adult provisions. Agreed. The suggestion is for more residential care, extra support and individual flats. In his article in the Guardian on Friday 14 October 2016 Rob Greig, Chief Executive of NDTi, described this approach as turning back the clock. The theory is that this will cost less but the only way that cost saving could possibly be made is with more shared staffing, ie. if the staffing levels are reduced. It’s hard to see how this can happen and still give people access to the community without restricted outings or by people going out in conspicuous larger groups; in other words, institutions set within our communities.

Both sets of commissioners and those around the country facing the same issues have unenviable positions. Rochdale is a highly deprived borough. The town has received more than its fair share of social scandals. It has not benefitted from the council tax precept; the council tax take is low and the pressures on adult social care are immense. In addition, there are few self-funders for adult social care in deprived areas and the need for social care greater. It is well discussed that the learning disability budget of councils takes a large proportion of any local authority’s budget. There is much talk of the share being disproportionate but because the help needed is usually life-long, we wholeheartedly disagree.

The costs of older adults are not comparable because most have the ability to self-advocate, save for their retirement and can make, for example, advance decisions about their care, or have an established home where they can plan for their twilight years. Care at the latter end of their life will necessarily be less and people also have more chance to decline care even if this is unwise. Such opportunities are almost never available to adults with learning disabilities and it seems unlikely that Rochdale’s plans will enhance people’s lives or achieve the requisite savings.

Sarah Pickup from the Local Government Association argues that she feels that savings have ‘pretty much gone as far as they can in most cases’. ADASS concur, adding that many in need of social care may already not be receiving the care needed, causing distress and, in some cases, additional NHS costs.

The Lancashire Learning Disability Consortium received an independent report from Laing and Buisson*, commissioned following Lancashire’s last, failed, attempt to cut the learning disability hourly rate paid to providers. It shows that to be compliant with employment law, national living wage and the much-debated Whittlestone ruling on sleep-in payments, the requisite quality care comes at a cost higher than that currently paid by both these local authorities. What must not be lost sight of is that appropriate care and its cost must be set by proper assessments of people’s needs. This is not the end of people’s lives – this is their life.    



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