This is the second blogpost where I’m revisiting the work I carried out from 1990 onwards - in the light of what has happened since.
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After Merry Cross and I carried out a review of the Boundary Road service for the London Borough of Camden in 1990 - the subject of my last blogpost - I was asked to do a review of “the range of living options available to disabled people in Camden in the 16-64 age group, and to help formulate user-led directions for future development”.
The review focussed on interviewing a representative sample of disabled people to identify their current accommodation and access to support; and what their aspirations were for how they wanted to live their lives and the support they needed.
The brief I was given stated that local health and social care services aimed “to work together to provide a range of living and care support arrangements which are varied and flexible enough to meet the needs of [disabled people] and enable them to have a real choice about where and how they live”.
Most of the resulting recommendations made to Camden’s health and social care services focussed on what needed to be done in order for disabled people to have access to the kind of personal assistance needed to go about their daily lives. They are the kind of recommendations to be found in so many documents when disabled people’s voices have been heard and responded to. At a national level, these voices and aspirations were most clearly encapsulated in the 2005 Independent Living Strategy, which drew on thirty years of campaigns for independent living and which was supported by both government and opposition at the time.
The Independent Living Strategy fell victim to the years of austerity after 2010 with most of its commitments unfulfilled. This was a result, not only of a reduction in funding to local authorities, the closure of the Independent Living Fund and so on, but also of a shift in the language and focus of public and policy debates on social care.
Government priorities are now couched in terms of speeding up hospital discharge by e.g. legislating to enable discharge from hospital without a proper assessment of support needs, and commissioning more ‘intermediate care beds’.
A different narrative is offered by Social Care Future - “a growing movement of people with a shared commitment to bring about major positive change in what is currently called ‘social care’”.
We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing things that matter to us.
These are the same aspirations that were being articulated by those I interviewed for the Living Options Review over thirty years ago. And even before that by people like Paul Hunt and John Evans, stuck in long-term residential care in the 1970s and 80s.
And, as is evident from the brief for the 1990 review, Camden’s health and social services were motivated by a similar aim - to enable disabled people “to have a real choice about where and how they live”.
But today, there are so many barriers to people having that meaningful choice about ‘where and how they live’ if they need support to go about their daily lives. Some of these barriers are the same as thirty years ago - such as the lack of suitable housing. Other barriers have got worse over the years.
For example, we thought that local authority budgets were squeezed in 1990. Today social care provision is suffering from the consequences of the years of austerity which followed the 2008 financial crash. By 2019/2020, local authority funding overall had fallen by 16% since 2010, largely because of a reduction in central government grants. The funding fell more in areas with higher levels of deprivation.
The gap between the tax-funded resources available for meeting older and disabled people’s needs for support, and the level of those needs, has grown year by year. Local authorities are increasingly unable to pay for the care they commission at rates which are financially sustainable for providers of care. The result, according to the Care Quality Commission and Care England, is that increasing numbers of care providers are handing back contracts to local authorities or refusing to take on such contracts in the first place.
The consequences for the care workers whose organisations continue to take on local authority contracts is illustrated by the Conference organised by the Association of Directors of Social Services in the East Midlands, where providers were advised on how to refer their staff to food banks and how to access benefits to top up their wages.
People who fund their own care and support find it increasingly difficult to find or pay for the support workers they need. At the same time, fewer older and/or disabled people are qualifying for publicly funded support. According to the Nuffield Trust, over the last few years, local authorities have tightened up their eligibility criteria and the means test has not risen in line with inflation. Moreover, when local authorities do assessments of the need for support they are increasingly using so-called ‘asset based approaches’ to direct people to rely on family members, neighbours and volunteers. And more and more requests for support result in no care being provided at all.
Age Concern has estimated that in 2021/22 28,890 older people died while waiting for support.
The social care sector continues to highlight the impact of low wages and poor working conditions on the level of vacancies and the Association of Directors of Social Services estimate that in 2022 an average of over 170,000 hours of homecare was not being delivered each week.
What do I conclude from all of this?
Well, I would say that we’ve seen progress in that the language of the independent living and disability movements is generally more evident (even if it doesn’t always match the reality) and few would deny disabled people’s right to the same aspirations and opportunities as non-disabled people. For older people progress in changing how we are seen is not so evident: a fact very evident to me now that I am both old and disabled in that it is my generally my age that prompts patronising language and low expectations.
But even progress in disabled people’s particular ‘culture wars’ has not prevented a reduction in our chances of getting the support we need to go about our daily lives.
And why is that?
During all our efforts to change the way support is delivered we often emphasised that it wasn’t necessarily about the money. Indeed, in many instances we proved that it cost less to deliver choice and control in people’s lives than it did to confine them to settings and forms of support which denied autonomy and self-determination.
In 2023, however, I have concluded that it is about the money. Social Care Future’s vision of what a good life looks like, the striving to continue to make progress of changing the way that people are supported - all of this is important. But I can’t be the only one who fears that - unless we have significantly more investment in social care - such striving will be in vain.
Disabled people were successful in our campaigns for direct payments - money to enable choice and control over who provided our support and how. But if direct payments, personal budgets or personal health budgets are not sufficient to compete with the wages paid by supermarkets then access to a normal life is impossible.
The battle we haven’t won is for an increase in public spending on social care.
The planned reforms to social care - initially introduced in the 2014 Care Act but yet to be implemented - would, if ever implemented, shift some of the costs of care borne by individuals onto public expenditure. But they wouldn’t increase the overall amount spent on social care.
In my last blogpost, which focussed on nursing and residential care, I concluded that any increase in funding on that form of care would only make the sector more profitable for private investors with little impact on the quality of care or the working conditions of staff. In contrast, an increase in funding on care and support to enable people to stay living in their own homes would not only attract more care and support workers, it would also deliver what most people want. Moreover, it would reduce the numbers having to go into the most expensive forms of social care.
But today (4th April 2023), the government announced its long-awaited ‘work force plan’ for social care - which halves the amount of money previously announced as available for increasing and supporting social care workers.
It is hard to see what the future of social care is - and therefore what the future is for older and/or disabled people is - other than the continuing decline of a crisis-riven service.
Life is going to be harder and harder for those of us who need support - and sometimes life won’t be sustainable with such a lack of support.
