Sunday, 12 January 2020

Another National Disability Strategy...?

A Briefing document attached to the Queen’s Speech presented to Parliament on the 19th December 2019 announced the government’s intention to develop a National Disability Strategy. The announcement  indicated that this Strategy would include housing, education and transport. A forthcoming DWP Green Paper would be about encouraging "employers to play their role in retaining disabled people and people with health conditions in the workplace".  Social care was not mentioned at all - which is particularly unfortunate as current political debate on social care has been confined to how to prevent older people having to sell their homes, with very little consideration of how public funds are currently used or might be better used. 

Those civil servants working on this proposed Strategy might like to revisit the previous national strategy, published 15 years ago, consider what progress has been made, and what lessons might help inform future policy development.  Improving the Life Chances of Disabled People (which I worked on as part of a team in the Cabinet Office) set out an ambitious 25 year aim that:

By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life and will be respected and included as equal members of society.

There were three aspects of ‘Improving Life Chances’ that disabled people’s organisations particularly welcomed.

The first was a commitment to “mainstreaming disability issues” and to achieve a “step change in the participation and inclusion of disabled people”.  In order for this to be achieved the Strategy set out how disabling barriers to equal access to housing, education, employment, transport, health services must be addressed; identified specific ways of tackling such barriers; and emphasised the importance of the Public Sector Duty to promote disability equality.

The second was the adoption of the definition of independent living as referring to 

all disabled people having the same choice, control and freedom as any other citizen - at home, at work, and as members of the community.  This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations.

This definition underpinned the Strategy’s proposals for a new system of delivering the support that people needed - a system which brought together different sources of funding to provide one single pot of resources, a budget that people would have control over and which could take in the form of cash and/or services.  

Eligibility was to be based on “requirements arising from disabling barriers” and budgets would “enable different types of support needs to be met, including personal care; family roles and responsibilities; access to the community, employment, voluntary work, training and education, and leisure activities; and include equipment, personal assistance, transport, adaptations and advocacy.”

Finally, the strategy not only recognised the importance of central and local government involving disabled people and their organisations in policy development and in the commissioning of services, but also contained a commitment that 

By 2010, each locality (defined as that area covered by a Council with social services responsibilities) should have a user-led organisation modelled on existing Centres for Independent Living.

From the 1980s, Centres for Independent Living had been set up in a number of areas by disabled people, primarily to support people using direct payments.  The Strategy envisaged that, at a minimum, these organisations should be funded to provide: information and advice; advocacy and peer support; assistance with self assessment; support in using individual budgets (including cash payments) to meet needs; support to recruit and employ personal assistants; disability equality training; and consumer audits of local services.

Although progress was made on some of these commitments, the financial crisis of 2008 and the ensuing years of austerity to a large extent halted further improvements and much more needs to be done in order to achieve disabled people’s rights ‘to live in the community with choices equal to others’ (as set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities).

There are strong social justice arguments for pursuing such a right.  But we also have to recognise that in the current context there is also a need to make sound economic arguments for policies to deliver this aim.  These arguments fall into two categories: the waste incurred by spending public resources on services which do not deliver good outcomes and, at worst, harm people; and the benefits resulting from investing in people and services which deliver good outcomes not just for the individuals concerned but for society in general.

In order to make our case we need to identify ‘windows of opportunity’ in the current social and political landscape.  Although a few of these may be found in the context of national politics and policies, it is likely that most are to be found within grassroots initiatives and communities - the most innovative and empowering developments have always come from those people (and their allies) whose lives are negatively impacted by a failure to invest in their futures.

‘Upstream’ costs and ‘downstream’ benefits
One of the most powerful, and in the end successful, arguments made by disabled people living in residential care during the 1970s and 1980s concerned the benefits of investing resources to enable them to live in the community with choice and control over how their support needs were met.  A key barrier for many, however, was the lack of suitable housing for them to move into.  This necessitated up-front expenditure on adapting or building such housing and, for many, it took years to persuade councils or housing associations to make such an investment.

Both then and now there is insufficient incentive for government, and after ten years of cut-backs little ability for local Councils, to make up-front investments in either housing or in community support services which would in the longer term both save money and improve the quality of people’s lives.  A key current example is the money tied up in expensive placements of people with learning disabilities and/or autism in so-called Assessment and Treatment Centres which makes it difficult to develop the community-based services which would deliver better outcomes and, in the medium to long run, would be likely to cost less. (See Note 1)

Fifteen years ago, the Life Chances strategy suggested an ‘invest to save’ approach in recognition that budgets currently tied up in institutional and/or disempowering services cannot be reduced unless additional up-front funding is provided for community-based services promoting choice and control in people’s lives.  When the Office for Disability Issues was set up following publication of Life Chances, we tried to persuade Treasury to take this approach in the 2006 Spending Review, but only managed to secure funding for a small number of projects which aimed to identify the costs and benefits of independent living.  The lessons of these - which involved support to parents with learning disabilities; independent advocacy; choice and control for older people - were lost in governments’ responses to the financial crisis of 2008.

Since then cost/benefit arguments about ‘invest to save’ have generally been confined to what steps can be taken to result in future savings to the NHS.  For example, how housing with support can make it possible for older people to leave hospital or avoid hospital admissions.

Current public and political debate on social care focusses on older people - and even then its focus is the extremely narrow one of whether people should have to sell their homes to finance residential care.  However, although there are fewer disabled people of working age using social care services than older people, total expenditure is roughly the same for each group and the number of disabled people of working age seeking support is increasing

Most of the increase in numbers and costs of social care for disabled people of working age is accounted for by people with learning disabilities and those with mental health support needs.  Yet it is in expenditure on these groups that clear examples can be found of unnecessarily high costs being incurred as a result of insufficient and/or inappropriate support being provided at earlier stages.  

A failure to adequately meet the needs of those who are born with or acquire physical and/or cognitive impairments and/or mental health difficulties not only results in poorer outcomes for individuals and their families but incurs unnecessary costs to society.  The recent announcement (in the briefing on the Queen’s Speech) of “£74m over three years for additional capacity in community care settings for those with learning disabilities and autism” is to be welcomed, as is the continued funding for local authorities to support former recipients of the Independent Living Fund.

However, neither of these announcements recognise the full extent of the benefits to be gained by ‘upstream’ expenditure to reduce ‘downstream’ costs.  For example, people with learning disabilities were the largest group amongst those in receipt of Independent Living Fund grants and the government recognised they would be particularly likely to be disadvantaged by its closure.   While funding for existing recipients has continued since the ILF closed in 2015, an increasing number of people who would previously have been able to look to the Fund are no longer getting access to the resources needed to enable them to ‘live in the community with choices equal to others’.  How many of those now in expensive long-stay hospitals would previously have received an ILF grant to enable them to remain living in their own home?  

A failure to invest in accessible and adaptable housing also results in unnecessary costs and a denial of the right to a private and family life for the 20% of people with a newly acquired spinal cord injury who are discharged from hospital to a care home.  How many of these would have instead been able to return to their lives, families and friends if we had invested in accessible housing? Last summer the Minister for Disabled People announced the government’s intention of consulting on requiring all new dwellings to meet the currently optional ‘accessible and adaptable’ standard in Building Regulations. However, there has been no further mention of this in recent government announcements concerning building regulations reform.

These are just two examples amongst many. The national policy debates on both social care and on housing need to be informed by the potential for making a better use of public resources by considering taking a longer-term, and cross-government, approach to outcomes. Debates on NHS funding and policy are often dominated by a preventative approach; while this is sometimes spoken of as the aim in social care, the reality is that rationing of scarce resources results in lower level needs remaining unmet with long-term consequences for both health and well-being.  Whatever new funding proposals are developed for social care, they must enable an ‘invest to save’ approach.

‘Top down’ diktat or community-led initiatives?

The current Prime Minister stated his intention to ‘fix the crisis in social care’ . Bryony Shannon has detailed everything that is wrong with this statement - the biggest problem being that it is “echoing the paternalistic approach that social care needs to move away from. He is taking charge, exerting his authority from ‘the steps of Downing Street’ and ‘doing-to’ us, the public.”    

In contrast, the Social Care Future movement is reframing the issue of ‘social care’.  This is a growing network of “people with lived experience, families, professionals, managers, support providers, user-led organisations, politicians, commissioners, community groups and others”.  They have come together to co-write a common aspiration:
We all want to live in the place we call home with the people we love, in communities where we look out for one another, doing the things that matter to us and with the peace of mind that should we, our families or neighbours need some support from public services to do so, that it will be there for us.

In contrast to the current social care system generally only responding to care needs when they become acute, initiatives which come from communities are commonly identifying needs which, if responded to, prevent or delay the development of greater need.  As research on community-led social care services found, these services are not only preventative, but also create good jobs - another key aspect of the sustainability of any service. 

If reform of social care merely focusses on stopping older people having to sell their homes in order to pay for residential care, it will fail to address the fact that expenditure on meeting the needs of younger disabled people (including disabled children) is already taking up half of the social care budget and is increasing.  Most importantly, it will fail to address the fact that social care resources in general are all too often tied up in services which do not deliver either good outcomes for those using them, nor good jobs for those working in them.

The solution is to harness the resources which exist within communities, to invest in organisations which are accountable to those for whom they provide a service, organisations which seek to care about what people care about and work alongside them to make it happen. 

The empowerment envisaged by the Life Chances proposals contained in the chapter on independent living failed to materialise.  Personal budgets were incorporated into bureaucratic priorities and those people who were intended to benefit from personal budgets had no say in how they were implemented.  It failed because most local authorities did not bring disabled people and their organisations into the heart of implementing personal budgets and commissioning services. It failed because the years of inadequate funding created insuperable barriers to ‘upstream’ investment to deliver ‘downstream’ savings.  It failed because communities were not enabled to develop innovative responses to promote participation and inclusion. 

These are important lessons that both the proposed National Disability Strategy and future social care policy need to address.

Addendum:After I published this blogpost, I listened to a podcast where someone said “If you want to fix potholes, fix social care”. The same evening I read in my local paper of a road with 50 potholes.  When developing the Independent Living Strategy at the Office for Disability Issues, we suggested to Treasury that no spending decisions in one policy area should be made without assessing any consequences for other policy areas. If this suggestion had been implemented, it would perhaps have been recognised that, if you squeeze local authority budgets in the way they have been in recent years, they will soon be able to do little more than their statutory duties - and repairing potholes (and much much else) drops further and further down the list of priorities. And of course potholes have consequences for the NHS - when cyclists and motorcyclists end up in A&E. 

Note 1: Social model language would use the term 'people with cognitive impairments' or 'learning difficulties' rather than people with learning disabilities, (and refer to neuro-diversity), and these would be my preferred terms.  However, people who are involved in the struggle against ATUs tend to use the term 'learning disabilities'.  This is often because the legal and policy frameworks within which they are trying to get access to support use this term.