Monday, 14 July 2014

For the first time in the history of modern social policy things are getting worse for disabled people.

There was a lot of political consensus on disability policy during the 20 years to 2010.  Over that period, the disability movement gradually influenced all three main political parties to recognise the discrimination we face in all areas of life, and to acknowledge and make some provision for the additional costs many disabled people incur.  Labour, Conservative and Liberal Democrat parties also came to recognise and support disabled people’s wish to have choice and control over any assistance or equipment we need to go about our daily lives. It was a Conservative government that, in 1992, introduced Disability Living Allowances and a Tory Minister who first used the term ‘choice and control’ in Parliament to signify government support for this important aspiration. 
Then, in 2005, with all party support, the Labour government published Improving the Life Chances of Disabled People, which set out a vision 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.
This was followed in 2008 - again with all party support - by the Independent Living Strategy. This set out an aim that, by 2013:
  • disabled people who need support to go about their daily lives will have greater choice and control over how support is provided
  • disabled people will have greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life.
[I should declare an interest here - I worked on both these policy documents.] 
There was a commitment to measure progress each year against a clear set of outcomes; and to consider the need for legislation on independent living if sufficient progress was not made by 2013.  
Unfortunately, in 2010 the Coalition government took a ‘ground zero’ approach to disability policy.  The Independent Living Scrutiny Group, chaired by Baroness Jane Campbell, was disbanded and 2013 came and went with no assessment by government on what progress had been made on the Independent Living Strategy.  I’ve therefore done the job for them, using what statistical evidence is available. It makes depressing reading.  I’ve summarised the main findings below, and the evidence for all these general statements is contained in the report itself.

There has been no progress in disabled people’s experiences of choice and control in their lives since 2008, and there is evidence that people who need support in their daily lives are experiencing diminishing opportunities to participate in family and community life.
Older people are finding it more difficult to access support and are experiencing fewer options and opportunities for independent living, while disabled people of all ages who have high levels of support needs are at increasing risk of institutionalisation. Mental health needs are increasing, but access to mental health services is becoming more difficult.
The employment gap between disabled and non-disabled people remains at the level it was in 2010, and there is no evidence that current policies to support disabled people into work are improving employment opportunities. Only 5% of disabled people on the Work Programme have found a job and, although the reported success rate for the Work Choice programme is better, only 1% receive this form of support. There has been a 16% decline in the numbers of disabled people receiving support from the Access to Work programme between 2009/10 and 2012/13.
Large numbers of disabled people have experienced a reduction in their household income since 2010, many are experiencing a reduction in housing opportunities and an increasing number are living in accommodation which is not suited to their needs. 
Although there has been a small decrease in the percentage of disabled people experiencing difficulties with transport, there has also been a large increase in transport difficulties experienced by unemployed or economically inactive disabled people.  Moreover, there have been significant reductions in expenditure on important programmes intended to increase transport opportunities.
This is the first time in the history of modern social policy that things are getting worse for disabled people.  Yet those with the power to change things are refusing to recognise how bad things have already become.  Unless there is a change of direction we are going to see more institutionalisation, more unemployment, more poverty, more prejudice and abuse. Opportunities for full citizenship amongst the current generations of disabled people are diminishing, and will only worsen for future generations unless urgent action is taken to reverse current trends. 

A small group of people have been meeting to discuss whether we can salvage anything from the Independent Living Strategy, and how we can campaign for the disability movement’s long-held aim of a legal right to independent living.  Some tentative proposals have been published via the Authors of our Lives blog and will be discussed at an Independent Living Conference on Friday 18th July. 

Thursday, 12 June 2014

Communication is at the heart of being human

This blogpost is written as part of the #107days social media campaign which was started after Connor Sparrowhawk (‘LB’), an 18 year old with learning disabilities, died in an Assessment and Treatment Unit.  This was a “preventable death” according to an independent report (although he had epilepsy he was left unattended in a bath and drowned).  I’ve written before about this. The 107 days of action will end on the anniversary of LB’s death, 4th July, and includes some wonderful actions and blogs as part of the #JusticeforLB campaign’s aim to “to inspire, collate and share positive actions being taken”.

I’m writing this because LB’s death and the campaign itself demonstrate two really important things: firstly that - at a time when so many aspects of social policy and social attitudes are going rapidly backwards - we need to hang onto what we have learnt in the past about the importance of everyone’s human rights and how to promote them; and secondly that if we really want to bring about positive change we have to do something fundamentally disruptive to existing systems.  If the ‘abject failure’ of the Winterbourne View transfer programme teaches us anything, it is that you can’t change outcomes unless you radically change the systems that are responsible for the problems in the first place.  I’ll come back to this point.

The campaign is also making a quilt, made up of patches sent in by many different people.  The photo above is the patch I’ve sent and it sums up one important issue I want to highlight.

“Communication is at the heart of being human”.  Sadly, some people will react to this statement by saying “But some people can’t communicate and you’re therefore saying they aren’t human”.

Such an attitude goes along with a failure to recognise how people can and do communicate. Communication isn’t restricted to being able to speak, or write, or use sign language. Most importantly, communication isn’t incompatible with significant cognitive impairment or what people call “severe learning disabilities”. 

Communication is about recognition of a message being conveyed - it is a two way relationship and we should be paying far more attention to the ‘recognition’ part of the relationship.  Instead of saying “he can’t communicate”, we should be saying “I don’t understand how he communicates; I need to do more to understand, acquire more skills and knowledge, talk to people who know him better than I do”.

How many times have you heard someone say (as I heard only a few days ago):  “X has severe learning disabilities and can’t communicate at all.  She loves swimming and lots of different kinds of music”?   My heart sinks when I hear something like this and even more when the speaker then goes on to describe X’s “challenging behaviour”.  

The statement is both a denial of the human right to communication and - ironically - at the same time it is an unintended recognition that X has in fact communicated very effectively about what makes her happy.  

Attitudes like this go along with a failure to focus on ourselves as a recipient of communication, and instead place all the responsibility on the other person.  Such attitudes betray a failure to use and develop our own skills of observation and understanding; and a failure to use the skills and experience of those who know the person best and who understand how and what they communicate.  

When I was doing research in the 1990s about the experiences of disabled children and young people living away from their families, it was very common to be told that a young person “doesn’t communicate at all”.  We tried very hard to find people who had a different perspective on those whose experiences we wanted to explore, and if we were lucky we found people like the volunteer who came into a residential home once a week to spend time with one young man who we had been told didn’t have any way of communicating:

You have to wait a long time for him to react.  Although if he’s feeling negative about something he soon lets you know - he screams and shouts when he doesn’t like something but it can feel very unfocused because it feels so extreme.  It feels as if it’s just coming from inside him but actually when you think about it, it’s usually something outside himself that he’s reacting to…because his negative reactions are so obvious it’s quite difficult to see his positive reactions but they’re there if you really pay attention.

Imagine if everyone ignored you when you spoke or consistently misunderstood what you said.  Imagine if people do things to you, for you, without paying any attention to what you say, to what you want, need or feel. Wouldn’t you “scream and shout”?

One of the things I try and do with most of the posts I write for this blog is to remind ourselves of what we’ve already learnt, and sometimes achieved, in the past.  Many people who have contributed to the debate following both LB’s death and the ongoing failure of the Winterbourne Review Joint Improvement Programme have referred to the important work of those such as Jim Mansell and to, for example, the origins of Person Centred Planning. As Sara Ryan, LB’s mother, has written: “We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. “ 

Just one of the key lessons from the past was encapsulated by Alison Wertheimer in a book she edited for the the King’s Fund about good practice in developing opportunities for people with learning difficulties. Published in 1996, it included many examples of understanding what people were communicating when they exhibited ‘challenging behaviour’, and how changing environments and activities, addressing health needs, and providing support in different ways reduced and eliminated such difficulties.  Alison wrote:

Contrary to what usually happens, people with challenging behaviour need more rather than fewer choices, and more opportunities to control their lives in terms of what they do, where they spend time and who they are with.

We do actually have some mechanisms which would, as Alison recommended, give people who are locked away in ATUs etc more choices and more opportunities to control their lives. But these are not to be found in the kind of organisations described - in another publication from 20 years ago - as dominated by an Apollo culture:

Apollo was the god of order and rules, and these organisations try to divide up the work into neat and distinct areas, where everyone has a clear defined role.  Each role has a job description and a defined area of authority, with clear lines of accountability and hierarchical systems of decision-making.  

These organisations cope well with stability but struggle to deal with major change.  There is a danger that change will simply be incorporated into the existing structure and have little impact, if cultural and values issues are not explicitly addressed.

This publication was promoting person centred planning and challenging the way support is delivered, but the analysis can be applied in a wider context.  We have systems which result in people entering and remaining in institutional settings because housing isn’t available.  We have systems which create additional support needs because health needs are unrecognised and/or untreated. We have systems which take mechanisms, such as direct payments and personal budgets, intended to increase an individual’s choice and control but which instead apply an Apollo culture of order and rules which undermines self-determination - there are many examples of this but Mark Neary’s experiences are just one. 

A clear lesson from the past is that in order to bring about real change the entire system has to be disrupted so that the focus is on creating more opportunities for people with learning disabilities to communicate their preferences and experiences.  We need something like Chris Hatton’s proposal that control of all the money currently spent on keeping people in ATUs (an average cost of £4,500 per week!) should be given to a “ninja task force” which puts people with learning disabilities and families in charge and works to “develop local, individual supports for people moving out of these services”.  A key issue will be the availability of housing - though there are lots of good practice examples of how to provide real homes for people with learning difficulties instead of tying money up in institutional provision. 

One thing that most of the reports which follow ‘scandals’ in health and social care systems illustrate is that services which deny the fundamental human right of communication create at best ‘challenging behaviour’ and at worst abuse and neglect that can end in death. And this applies as much to, for example, older people as it does to people with learning difficulties. 

In order to bring about real change we have to reconstruct systems and services that have as their main motivating force the ability to recognise and act on what an individual communicates about their needs.  It is only by changing who has control over the available resources that we will have any hope of both protecting and promoting the human right of communication and of avoiding the wasteful expenditure on services which all too often fail those whose lives they are supposed to enhance.

Thursday, 24 April 2014

Personal budgets and self-determination

Self-determination – in the sense of being able to act on, and/or have others recognise, your needs and aspirations – is key to the transformation of support which disabled people and their allies have been seeking over the last 40 years. More than that, it is central to disabled people’s demands for access to full and equal citizenship. As Simon Duffy argued, in making the case for the rights of people with learning difficulties to citizenship:

“Put simply, if you have self-determination then this means you are in charge of your own life.  If you do not have self-determination then other people are in charge of you” (Duffy, Keys to Citizenship, 2003, p.5). 

In the current debates about personal budgets and social care, we are in danger of losing touch with this.

This blogpost has been prompted by an article in the Guardian which attacks the roll out of personal budgets, cites research on limitations of self-directed support, and refers to a letter that has been sent to all Directors of Adult Social Services arguing that “the strategy for personal budgets and personalisation is not only failing: it is also undermining the quality of the care and support provided”.

The article claims that “SDS [self-directed support] has failed to deliver its foundation stone, the up-front allocation of money to allow people to choose their own support”. There is a danger here of confusing the principle of self-directed support with one of the mechanisms for self-assessment and support planning – the purpose of the ‘up-front allocation’ being to give the individual an idea of how much their budget might be in order that they can plan how their needs might be met.

The author also says that the “over-arching vision” of current social care policy “is to personalise services and so improve outcomes for service users”. This is not in fact what the original aims of personal budgets were: instead their origins are closely tied to the pressure from disabled people for choice and control over the support they need to go about their daily lives. In other words, the focus was not on personalising services but on increasing the autonomy of disabled people.  Choice and control over the support needed in your daily life means you can aspire to self-determination – without such choice and control many people can’t even choose when to get out of bed or go to the toilet, let alone participate in or contribute to their families, communities and the wider society.

I wrote about the history of direct payments and independent living in an earlier blog post, emphasising how important it is to know where we’ve come from in the context of addressing current challenges.  It’s similarly important to consider how personal budgets came to be adopted by both the Labour government and the current Coalition government, in order to understand the contradictions and difficulties we are facing in their implementation.

How did we get here?
During 2004, the Prime Minister’s Strategy Unit was developing a 25 year cross-government strategy Improving the Life Chances of Disabled People. In developing the chapter on independent living, the Strategy Unit built on not just the experience of disabled people’s organisations and direct payments, and the success of the Independent Living Fund but also the pioneering work that In Control had been doing on individual budgets (primarily but not entirely for people with learning difficulties).

What all these things had in common was that disabled people were able to decide, for themselves and/or with the help of families, friends and supporters, how to use the resources which the State made available to them to support them in their daily lives. 

However, while all these initiatives had been helpful in giving people more control over the support they needed, they only involved resources available for ‘social care’.  Yet one of the key messages from disabled people was that they were fed up with their lives being fragmented across different services and budgets. For example, the division between community health and social care services resulted in the ludicrous argument about whether the need for a bath was a ‘social’ need or a ‘medical’ need; while people claiming Access to Work support often had to face the argument from the Department of Work and Pensions (DWP) that they couldn’t fund a wheelchair used at work because it was also used at home.

Another key message was that disabled people’s own expertise in what their needs were and how to meet them was considered subordinate to professional expertise; while another was that some people, or the family members supporting them, wanted more control over resources but were daunted by the responsibility of taking a direct payment and organising their own support.

Life Chances therefore committed the government to developing a new system of delivering support which would include:
“a simplified resource allocation system, including ‘one stop’ assessment and information”, which “addresses all aspects of needs for support and/or equipment or adaptations”
-  Individuals being able to “take some or all of their budget as a cash payment and/or to have control over the budget (with support if necessary) without actually receiving the cash”
-  “self-assessment, with advice/information or advocacy support where required”
-   Each local authority area having a user-led organisation, modelled on existing Centres for Independent Living, which would provide support to disabled people to enable them to use individual budgets and direct payments.

The key elements of this proposed new system can thus be seen as:
-   bringing together different budgets and systems to deliver resources in the form of a cash payment and/or budget under the control of the individual disabled person;
-   based on self-assessment of needs and how best to meet those needs;
-   together with the provision of advice, information and advocacy required to make full use of such resources.

There was a lot of resistance, at senior level, within the Department of Health to these proposals but there was eventually agreement to pilot individual budgets, which would bring together six different funding streams.  There was also a specific project funded by the Department of Health to deliver the commitment on user-led organisations – a project which had some success even at a time when cut-backs were being made to local voluntary organisations, and which continues today in the Office for Disability Issues’s Disabled People’s User-Led Organisations programme

However, the attempt to bring together six different funding streams in the Individual Budgets pilot failed owing to the inability of the different government departments to work together to bring this about – there was a lack of understanding about, and support for, the rationale underpinning the policy, particularly within the DWP.  At the same time, the Department of Health was developing a strategy with the aim of ‘transforming adult social care’.  This resulted in Putting People First: a shared vision and commitment to the transformation of adult social care and included a commitment to personal budgets for social care, which owed much to the support of Ivan Lewis MP for the policy.  

While the proposals set out in Life Chances – and the Independent Living Strategy which followed in 2008 – were clearly grounded in the aspirations of the independent living movement, the Department of Health’s proposals were couched in terms of personalising social care services.  There is a potential tension between an approach which focuses on ‘tailoring services to individuals’ and one which focuses on the autonomy of an individual to decide how best to meet their needs.  The former approach is more likely to leave professionals and service providers in charge of deciding how best to ‘personalise’ services while the latter requires a fundamental transformation of power relationships.

Nevertheless, the implementation of personal budgets built on the model originally developed by In Control – which does aim to transfer power (in the form of information and resources) to disabled people.  A key part of this model is telling people, at an early stage, what level of resources they might expect.  This was considered necessary to enable people to be fully involved right from the start in deciding how best to go about meeting their support needs. It also places disabled people on more of an equal footing with social workers/care managers, who themselves usually have an idea of what level of resources are likely to be available. It does not – and was never intended to – replace the local authority’s statutory obligation to carry out a needs assessment as laid down in legislation, guidance and case law.

Barriers to self-directed support
Personal budgets, like direct payments, are merely a tool - albeit a necessary one – to enable people to have choice and control over the support they need.  If you don’t have control over the resources – in the form of a cash payment or a budget – then you cannot self-direct your support and your self-determination will be severely curtailed.  As Think Local Act Personal state on their website, “The aim of self-directed support is to give people control over their support so that they can live more independent lives. Rather than being passive, people are active citizens choosing how to spend their allocated budget with or without help”. Yet this is what current critics are urging government to jettison.

Of course, there are also other things which are necessary for self-determination: the level of resources must be sufficient; there must be an absence of unnecessary restrictions on how the resources can be used; information and advice will be needed about how best to use resources; assistance from others may be necessary in order to plan how best to meet needs and put the support in place; and there must be appropriate services, equipment or activities available from which to choose.

It should surprise no-one that there are many barriers to ensuring all these factors are in place and – in the context of unprecedented pressures on social care budgets – it is predictable that the local authority role of rationing scarce resources has become more and more problematic for those on the receiving end.  Such pressures are manifest in an intensification of bureaucratic processes associated with rationing activity.  In order to save money, local authorities have reduced the number of professionally qualified social workers carrying out assessments, increasing the number of assessments carried out by more junior, less qualified staff, while increasing bureaucratic procedures in order to keep a tight rein on how resources are allocated.  The introduction of personal budgets has fallen foul of the economic times in which they are being introduced, resulting in restrictions on inadequate budgets which – too often – fail to deliver the self-determination that the policy was intended to make possible.

To add insult to injury, many councils have glossed over the impact of budget reductions by talking about ‘personalisation’ and ‘transformation’, using the language of empowerment and choice and control (as is shown for example in Karen West’s study of one particular local authority).

The original introduction of direct payments – from 1996 onwards – similarly often failed to deliver the choice and control envisaged by campaigners but in that case and at that time it was more down to the attitude of a lack of trust amongst professionals: a fear that people might abuse the system and an assumption that many disabled people were not ‘capable’ of making choices or the ‘right’ choice.  Even so, there were occasions – as there are today - when councils sought to shut down valued services (such as day centres and residential respite), justifying this as necessary to put control in the hands of service users but in actuality driven by the wish to cut back expenditure on expensive, building-based, provision.

One problem for many of us is that the demand for direct payments and personal budgets can all too easily be seen as a way of marketising and privatising public services.  The problem for disabled people, and their families, is that – while we may want to defend public services – our experience is all too often that we have little or no say in how we live our lives.  We can only reconcile the two positions by developing mechanisms which marry collective provision with individual choice and control.  Individual choice and control cannot be achieved while power remains in the hands of institutions and professionals; but neither can it be achieved unless resources are made available to individuals through a progressive taxation system. This is what direct payments were intended to do – and where professionals and local authorities support people to use direct payments then this is what they achieve.  Personal budgets were a response to the criticism that managing direct payments was too onerous and daunting for some.  They were intended to deliver the same principle of self-directed support as direct payments. 

We need statutory guidance on self-directed support
The authors of the recent letter to Directors of Adult Social Services, referred to above, have said that a personal budget “need be no more than a signal that no support plan will be constructed solely on the basis of selecting services from a pre-purchased menu”. This would be to throw the principle of self-directed support out of the window. The forthcoming guidance on the Care Bill must include the principle of self-directed support – and set out how Councils should go about delivering this.  It will not be enough to merely require councils to name the amount of money available in a personal budget. If the guidance does not include the ways people can direct their own support there will be no leverage on councils to do anything other than they always have.

Many local authorities have resisted attempts to increase transparency in the processes of assessment and allocation of resources, and all too many professionals have little commitment to self-directed support as the route to disabled people’s self-determination.  It is very unfortunate that flaws in the way local authorities are implementing personal budgets are being used as a reason to undermine the principle of self-directed support.

Anything which undermines the gradual progress we have been making over the last 40 years towards independent living needs to be resisted.  And the current attacks on personal budgets are undermining that progress.   Up-front allocations and support planning are intended to help redress the balance between professionals and disabled people.  They are being misused by some local authorities as mechanisms for rationing and controlling what people spend their budget/direct payment on, and how.  This does not invalidate the value of such mechanisms.  Instead, it makes it even more vital that there is statutory guidance to help ensure they are used to empower rather than disempower people.

Tuesday, 1 April 2014

A society that says we cannot afford too many disabled people

[This blogpost has been amended on 2nd April as I was told that Victoria, who I refer to below, has very sadly died]

Yesterday, 31st March, there was a short debate in the House of Lords about the closure of the Independent Living Fund.  The debate was opened with a question tabled by Jane Campbell:

“To ask Her Majesty’s Government what arrangements they are putting in place to ensure that disabled people currently in receipt of money from the Independent Living Fund will not be left in hardship when the Fund is wound up next year and the responsibility for Fund recipients is handed to local authorities.

The word ‘hardship’ does not even begin to encompass the fears of people currently relying on ILF money.  Since it was set up in 1988, the ILF has enabled people with the highest levels of support needs to live in their own homes and to have choice and control over the support they need to go about their daily lives. Some people who receive ILF grants have spoken eloquently about what a difference it makes to their lives.  The ILF has been a particularly important source of funding for people with significant learning difficulties, such as Victoria who I wrote about in a previous blogpost who very sadly has now died but who, with the support of her family and the Independent Living Fund, was a wonderful pioneer of independent living. 
These are people who, in previous times, languished in various forms of institutions – Young Disabled Units, residential and nursing homes, and the wards of long-stay hospitals. The Connor Report illustrated how, if families do not receive the help they need to support young people with learning disabilities, the institutional alternative can lead to ‘preventable death’.  Many current ILF users, like Mary Laver, have spoken of their fears of what will happen to them with reduced support.

Local authorities have stated that transfer of responsibility to local authorities will mean that many current ILF recipients will get less funding, and the government accepted this in their recent Equality Analysis. However, they argued in their response to the consultation on closure,“All disabled people, including those transferring from the ILF, will continue to be protected by a local authority safety net that guarantees disabled people get the support they need.” 

It is this ‘safety net’ approach that people fear – instead of being able to aspire to an ‘ordinary life’ they will, at best, be left with just ‘life and limb’ support (the ‘safety net’ that the government refers to) or, at worst, be forced into residential care.  That this is a realistic fear is evident not only from the local authority responses to the consultation on closing the ILF, but also from the National Association of Financial Assessment Officers (the people who carry out the means-test to determine whether disabled and older people should be charged for their care).  They told the government’s consultation on closing the ILF that “some councils may determine that residential care would be a less expensive option than a high cost homecare package. “

The closure of the ILF is part and parcel of the attack on public expenditure, an attack which is usually justified in general terms about how much our economy can ‘afford’ and played out in arguments about billions of pounds and percentages of GDP. But what this is really about is whether we can ‘afford’ to enable disabled people to lead the kind of lives non-disabled people take for granted.

This question was also implicit – and needs to be made explicit – in the recent debate about the so-called benefits cap.  Including Personal Independence Payment, Disability Living Allowance, Attendance Allowance, Carers Allowance and Employment Support Allowance in the cap means that we can only ‘afford’ to provide funding to support a certain number of disabled adults and children. 

This assumption is already being played out in the replacement of Incapacity Benefit with Employment Support Allowance. The last Labour government, followed by the current Coalition government, implemented the change with the target of reducing the numbers receiving the benefit by 1 million.

Kaliya Franklin illustrates the mechanism for bringing about a reduction in the numbers recognised as disabled or ill and needing support. The Department for Work and Pensions did not need to set formal targets for finding people ‘fit for work’.  All they needed to do was to decide what percentage of people needed to be found ineligible for support in order to meet the projected savings, and then introduce a test – the Work Capability Assessment – which measured people against these norms.  As Franklin describes, the Personal Capability Assessment determined eligibility for Incapacity Benefit by assessing whether someone met certain criteria.  In contrast, with the introduction of the WCA, “People must both score the number of points required for benefit receipt and fall within the proportion of people the norms system will allow to receive the benefit.”

A similar system is being introduced with the replacement of Disability Living Allowance by Personal Independence Payment – with the intention of cutting the budget by 20%.   

All these policies have one motivation – the desire to bring about a smaller state, fuelled by an ideological belief in ‘the market’ and by the self-interest of people who benefit from privatisation of public services. The closure of the ILF may seem – to many political activists - like an issue only affecting a small number of people and as on the periphery of the wider debates about what kind of society we want. But it isn’t a minor issue – it is indicative, and part, of the huge impact that current policies are having on all our lives, whether directly or indirectly or in the future as we grow older.

Rosalie Wilkins, another member of the House of Lords, said in yesterday’s debate:

“The government have been given the clearest of warnings that their plans to close the Independent Living Fund and transfer its responsibilities to local authorities could relegate thousands of disabled people to residential care – either that or they would be living such reduced lives that they would be deprived of their current ability to live independently, have a family life, be educated, be employed, do voluntary work and contribute to their communities.  Is the coalition Government honestly willing to accept this?”

Or, to put it another way, a year ago Guardian columnist Zoe Williams, asked the government a question we would all like an answer to – “What's your plan for these people whose lives we apparently can't afford?”

In the meantime, it seems that the Courts are the only light on the horizon.  As I wrote in a previous blogpost, although the High Court did not allow the appeal mounted by five ILF users earlier last year, the judge warned that the government should take action in order to protect ILF users and, in particular, to fulfil the government’s obligations under the UN Convention of the Rights of Disabled People. He stated that if the forthcoming legislation on social care, or the Code of Guidance on transferring responsibility for ILF users to local authorities, “does not arrive in time or turns out to be too anaemic in content to enable the Convention principles to be brought to bear in individual cases”, then there would need to be re-consideration as to whether the Public Sector Equality Duty had been fulfilled.  He also said that this would also be the case:

“if the level of Treasury funding for disabled people generally or for this class of ILF users in transition back to [local authority provision] in particular is so austere as to leave no option but to reverse progress already achieved in independent living”.

The importance of the human rights framework has been highlighted by the Supreme Court which recently ruled that:

“[I]t is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race...This flows inexorably from the universal character of human rights, founded on the inherent dignity of human beings, and is confirmed in the United Nations Convention on the Rights of Persons with Disabilities. Far from disability entitling the state to deny such people human rights: rather it places upon the state (and upon others) the duty to make reasonable accommodation to cater for the special needs of those with disabilities.”

Yesterday, the government rejected Jane Campbell’s proposal that the impact of the closure of the ILF should be monitored in partnership with disabled people and their organisations.  This is something therefore that we need to do for ourselves.  We need the better resourced national disability organisations to work together with local disabled people’s organisations to keep track of what is happening, disseminate it widely, and support individuals to mount legal challenges.

Monday, 3 March 2014

The Connor Report: 'Preventable' deaths and the wrong lessons

[Note: I deliberately refer to research and projects from 20-30 years ago in this piece.  One of my motivations for writing this blog is to highlight what has happened in the past because our institutions seem to have so little memory and this too often means the same mistakes are repeated again and again.]

On Monday 24th February, Southern Health NHS Trust published an independent report into the death of 18 year old Connor Sparrowhawk, which concluded that his death was preventable.His mother, Sara Ryan, writes a wonderful blog about her family’s life with, and love for, Connor, with a searing account of the impact of his death and of the further damage that Southern Health has wrought by the way they reacted (summary here). 

Since the report’s publication, a number of blogs have been written which share in Sara and her family’s grief for their loss, highlighting the various findings and implications, and the fears of other families struggling to get support (a summary list of these is here). 

If there is one thing we need to learn from the Connor Report and all those preceding it (including the Confidential Inquiry into premature deaths of people with learning disabilites, which found that over 1200 people with learning difficulties die prematurely each year) it is that the lessons learnt in the past have been the wrong ones.  Otherwise it wouldn’t keep happening. 

After every one of these inquiries, those responsible for poor and/or negligent ‘care’ say that they have ‘learnt lessons’ and put policies and procedures in place to prevent these things happening again.  However, as Rich Watts pointed out , “the independent investigation found that Southern Health had policies, guidance and pathways in place that should have ensured there were minimum standards of care, but that all of these were simply paperwork, and didn’t translate at all into practice”.

We have mountains of strategies, policies, procedures which are about best practice, involving service users and families, and ‘person-centred care’.  Many of these have followed inquiries and research, and are full of good intentions. But the lesson is that writing it down in documents, which are often in fairly inaccessible language, for circulation to managers and down to front-line staff within organisations, doesn’t work.

We should have learnt by now that most ‘best practice’ examples describe face to face contact between disabled people, families, and providers of services.  The ‘best practice’ quoted usually flows from this face to face contact, and from listening to each other, from trying things out, most importantly from working together with individuals and those who love them to sort out problems.

For me, one of the key findings of the report was that: “We found no evidence to show that the experience and knowledge of CS’ parents were captured at the beginning of his admission or included as part of his risk assessment and care plan.”

This failure to acknowledge and use the experience and knowledge of family members is nothing new when it comes to service responses to young people with learning difficulties.  The experience described by Connor’s mother is only one recent example of many which echo Ann Shearer’s comment over 30 years ago: “There is even evidence that the patterns of official help actually make life harder for families….” (Ann Shearer, 1981, Disability: Whose Handicap?).

There is so much research illustrating the difficulty that families have engaging with services and getting professionals to listen to them, particularly in the context of young people’s transition to adulthood.  As Mark Neary says: “Why are families considered the enemy as soon as our dudes move into adult social care? A lifetime of knowledge is instantly dismissed and the professionals invariably adopt a “we know best” position.”

There is also a wider context which concerns the decisions made about what services are provided and how.  People with learning difficulties and those who love them are excluded from these decisions but they have to experience – and sometimes suffer - the consequences.  However, the report into Connor’s death does not cover the role of Oxfordshire Clinical Commissioning Group or Oxfordshire Social Services, who are responsible for whether the right support is commissioned in the first place.  

For many years, research has identified problems with how decisions are made about what services should be provided.  As Tony Ryan concluded in 1998 “The biggest problem is with commissioners because commissioners, here, are somewhat removed from the day-to-day reality” (Tony Ryan, 1998, The cost of opportunity: Purchasing strategies in the housing and support arrangements of people with learning difficulties). There may be a different commissioning structure today but the problems remain the same – and these problems can only be avoided by placing people with learning difficulties, self-advocacy groups and family members at the heart of the decision-making. If we asked not only people with learning difficulties themselves but also those who love them how we as a society should be responding to their needs, maybe Assessment and Treatment Centres wouldn't even exist.  We need much more than so-called 'user involvement' – instead policies and services for people with learning difficulties should be generated by them and by those who love them. 

Commissioners are acting on behalf of us all - using public money to purchase services which are supposed to add to the quality of people's lives.  Connor was in the unit because the support which he and his family needed wasn't provided - local health and social care commissioners need to be asking why not and what help do they, as commissioners, need from people with learning difficulties and their families to enable better commissioning decisions?

I have three practical suggestions which might help to avoid the wrong lessons being learnt from this important report into such an unnecessary death:

1. Open up the commissioning of health and social care services for people with learning difficulties to self-advocacy groups and family members.  Don’t start with the services you already commission but with a blank sheet of paper to identify what kind of support would really make a difference.  Throughout the commissioning process, use the Open Contracting Principles – signed up to by the UK government – and adopt a policy of ‘affirmative disclosure’. 

2. Ask self-advocacy groups and family members to monitor services.  The idea of ‘lay assessors’ is not a new one and commissioners and providers should be placing people who use services and their families at the heart of monitoring how each service is doing.

3. Involve people with learning difficulties and family members in all the different stages of recruiting staff – from drawing up job descriptions and person specifications through to interviewing. As Carl Spaul saysattitude and values are key to making people feel empowered and valued” and people using services are very astute at identifying the attitudes and values which make for good quality care.

All these three things have been done before.  Unfortunately, the experiences and the lessons learnt have not always been built upon and have sometimes been lost.  They need to be revisited. One example of involving people with learning difficulties in the commissioning process was when, in 1994, health and social care commissioners in the London Borough of Newham invited a local People First group to work in partnership with them to both commission and monitor services.  Four ‘speaking up’ groups were set up which over a period of two years influenced what services were commissioned and provided (People First, Newham Social Services, East London and The City Health Authority, 1996, Putting People First: On our way to do things better).

There are also a lot of lessons to be learnt from people with learning difficulties monitoring and evaluating services.  Again this has been done over the last 20 years, one early example being when People First evaluated services for people in long-stay hospital placements and in the community in the London Boroughs of Sutton and Haringey (People First, 1995, Outside but not Inside …yet! Leaving hospital and living in the community: an evaluation by people with learning difficulties). 

In the mid-1990s, the Joseph Rowntree Foundation recognised that more and more organisations were involving people with learning difficulties in recruiting staff and commissioned the Norah Fry Research Centre to explore the extent and benefits of this. 

It would be more useful to learn from, build on, and emulate these types of experiences than to write yet more policies and procedures about what services should be doing.  It is extremely distressing that the long history of inquiries into ‘preventable deaths’ and poor care tend to find the same thing again and again.  And even more distressing that the response is always, "We've learnt from this, we've put in place guidance/policies/procedures/changes".  The most important thing to learn from looking at the Connor Report and the many many others is that whatever we've 'learnt' hasn't been the right lesson. 

We also need to face up to a systemic failure to really value the lives, views and experiences of people with learning difficulties (and a tendency to devalue the knowledge, experience and role of parents and other family members) – which arguably amounts to institutional disablism.  Why don't those responsible for commissioning and managing such provision pay more attention to how people like Connor, and those who love him, are experiencing the service, and what is it adding to his life? This question raises issues not just for providers and commissioners but also for us as a society.