Friday, 30 October 2015

Independent living and disabled people: Rhetoric and reality

As in most areas of current British policy, there is a yawning gap between government rhetoric and the actual impact of policies on disabled people’s lives.  The government’s website provides a link to the United Nations Convention on the Rights of Persons with Disabilities but there is mounting evidence that its policies are taking us further and further away from the realisation of these rights. The most recent summary of this evidence is provided by Inclusion London’s excellent account published recently, which I would urge everyone to read. 

The gap between rhetoric and reality is perhaps most apparent in respect of Article 19.  All governments which have signed up to the Convention (as the British government has) commits them to: 

recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.

Our government is very keen to point out that disabled people in this country are better able to access this right to independent living than in many other parts of the world.  This is undoubtedly true but what it fails to acknowledge is that this progress was made as a result of government policies during the 20 years up to 2010.  Since then, our access to independent living, has been steadily undermined - and it is of no comfort to tell us that we are better off than if we were living in, say, Romania or Zimbabwe. 

Current rhetoric makes much of the Care Act 2014 and the roll out of personal budgets.  Personal budgets have their origins in the success of direct payments - cash payments in lieu of social care services which enabled disabled people to have choice and control over how their support needs were met.  It was recognised that not everyone wanted to take on the tasks and responsibilities of purchasing their own support so personal budgets were intended to give people control over the resources to which they were deemed to be entitled.  Their purpose was to deliver the same degree of choice and control as direct payments, but with social services authorities taking responsibility for managing the money. 

I’ve written before about the importance of recognising this original vision of personal budgets and how they were driven by the wish to deliver self-determination, the bed-rock of independent living. 

The idea that the current implementation of the Care Act is delivering self-determination is significantly undermined by the reality - and we should remember that April 2015 (when the Act was formally implemented) was not Year Zero.  The legislation was only a culmination of what local authorities were supposed to have been doing since the various attempts to 'transform' and 'personalise' social care since the 2007 Putting People First strategy. 

So what is the reality?

The most recent snapshot is given by a survey, initiated by the Independent Living Strategy Group, of people’s experiences of social care over the last year.  This found that almost half (45%) of respondents said that their quality of life had reduced and almost a third (30%) said that they had experienced a reduction of choice and control over the past year. This follows the government’s own evidence that - while there was a slight improvement in disabled people’s experience of choice and control between 2008 (the first year this data was gathered) and 2011 - from 2011 onwards progress was halted.  In 2008, one in five did not ‘frequently’ have choice and control.  By 2013 this had increased to one in three. (And the longitudinal survey which gathered this data has been discontinued)

But why would we expect anything different?  Funding for social care support has been declining since 2010, while demand has been increasing. This has resulted in: a reduction in the numbers receiving social care support; reductions in the amount of support people get; and a financial crisis amongst care providers as a result local authorities’ commissioning practices.

I can guarantee that the government will trumpet the increase in the numbers of people receiving what they call ‘self-directed support’. But this is just another example of the gap between rhetoric and reality. What this means is that more people in receipt of social care now receive personal budgets (about two thirds of total recipients). But the reality is that, far from delivering self-determination many local authorities are implementing personal budgets in ways which do not deliver choice and control.  Budgets are set at levels which do not allow for more than basic personal care and restrictions are placed on how money can be used. Instead of auditing whether budgets achieve outcomes, they are measured by requiring the purchase of specific units of time and type of service.  And very onerous and time-consuming record-keeping is often required which undermines flexibility and self-determination.  
In addition, independent living is getting more difficult to access for people who would have had their support needs met by the Independent Living Fund before it closed to new applicants in 2010. And those in receipt of ILF funding until its abolition this year are fearful of the consequences of transferring to local authority funding.
The Association of Directors of Social Services and the Local Government Association told the government that “the value of the personal budget ….will generally be at a lower level than the initial ILF/LA [Independent Living Fund/Local Authority] budget”. The Coalition government accepted that this will be the case when it published an Equality Analysis on closure of the Independent Living Fund. 
As local authorities carry out reassessments of people transferring from the ILF there is emerging evidence that significant numbers will receive lower levels of support.  A Freedom of Information request to one local authority has revealed that of the 60 who have been assessed, 53 have had their packages reduced.  Of these, 16 have seen cuts of more than 50 per cent; seven of between 41 and 50 per cent; and 11 of between 21 and 40 per cent. 
Disabled people in receipt of Independent Living Fund grants have voiced their fears that they may be forced into residential care.  That this may well not be an unfounded fear is confirmed by 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) who told the government “some councils may determine that residential care would be a less expensive option than a high cost home care package”. And there is recent evidence that Clinical Commissioning Groups, responsible for funding people whose care needs are deemed to require nursing care, are limiting the amount of support at home to the cost of a nursing home placement.  It is already the case that 1 in 5 young people with spinal cord injury are discharged from hospital to nursing homes for older people, partly because of lack of available housing, but it will only become harder for them to return home if funding from both local authorities and CCGs is squeezed further. 
People with learning disabilities are particularly disadvantaged by the closure of the Independent Living Fund. People with ‘severe learning disabilities’ make up the largest single group (33%) whose support needs were funded by the ILF and the government has recognised they are likely to experience a reduction in their support package when transferred to local authority funding. 
The Independent Living Strategy Group is an informal group of organisations and individuals who are seriously worried that independent living opportunities are rapidly diminishing. The Coalition government, although it signed up to the 2008 Independent Living Strategy, disbanded the Independent Living Scrutiny Group chaired by Jane Campbell, and failed to examine progress at the end of the 5 year Strategy.  In 2014, the ILS Group attempted to do this instead - albeit hampered by the discontinuation of, and failure to measure, the necessary data. 

We have now embarked on a monitoring of disabled people’s experiences of the Care Act, including a monitoring of what happens to people who transfer from the Independent Living Fund.  The recent survey is just the first stage.  Subsequent stages will try to measure the current government’s rhetoric against the reality of people’s actual experiences of receiving support. We fear that the gap - already wide - will just increase and that, far from making progress on delivering Article 19 rights to independent living, disabled people’s opportunities will in fact diminish.