Tuesday, 11 October 2011

"Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens."

(The above quote comes from Sue Marsh's blog, Diary of a Benefit Scrounger

On the second day of the House of Lords Committee stage of the Welfare Reform Bill last week, Baroness Jane Campbell asked the government to reflect on what happens when an assessment process is developed with no involvement of disabled people and their organisations.  

She talked of a woman who has end-stage multiple sclerosis and who can now only move one eyelid and murmur inaudible words. Atos, the company carrying out Work Capability Assessments, telephoned her to say she needed to attend their offices to be assessed. When her husband explained that this was not possible, they said that they must speak to her on the telephone and read out a statement.

Jane Campbell continued:

“When her husband explained that she could not speak, they asked him to hold the telephone so that they could read it out to her, so he put the speaker phone on. They said: ‘This assessment is necessary and mandatory. If it does not go ahead, there will be consequences’. The woman, of course, found this very distressing and scary. They continued, refusing to take into consideration that the woman was not able to be interviewed. They were working from a script in which there is no flexibility and no requirement on assessors to apply themselves to real life situations or to take a different approach to different disabilities or health conditions”.

As Baroness Campbell says, the welfare benefit reforms have not been “intelligently and systematically co-produced in any substantive way with disabled people and disabled experts”.  As she also pointed out, disabled people and their organisations have a lot of experience of working with central and local government to co-produce policy – for example this is currently happening through the Right to Control programme,  an initiative intended to provide disabled people with choice and control over the resources they are entitled to.

Indeed, for some years, the government has been investing in disabled people’s organisations to bolster their sustainability and enable them to play a full role in helping to develop and implement policies which affect disabled people’s lives.  

In 2005, the government strategy, Improving the Life Chances ofDisabled People, set out a commitment that – by 2010 – every local authority area should have a disabled people’s user-led organisation. The Department of Health then launched a programme to help bring this about and this is now being built upon by the Strengthening Disabled People’sUser-led Organisations Programme.

The legal framework for involving disabled people in the development and delivery of services is provided by the Public Sector Equality Duty in the Equality Act 2010.  That Act means that public authorities must have ‘due regard’ to:
- the need to eliminate discrimination, harassment and victimization of disabled people;
- advance equality of opportunity;and
- foster good relations towards disabled people.

The Office for Disability Issues, whose role it is to champion disability equality across government, is clear that involvement of disabled people and their organisations is key to fulfilling this duty.

How, therefore, have we ended up with an assessment process which, in its design and delivery, seems to fail on all three aspects of the duty?

When Peter Beresford, from Shaping Our Lives, a user-controlled organisation, gave evidence to the Joint Committee on Human Rights Inquiry into Independent Living, he voiced concern at the assumption that disabled people will only get paid work if a ‘stick’ is applied.  On the contrary he said, many disabled people would wish to see employment as a right.  Policies should be focused on barriers to employment rather than assuming that “people identified as disabled will only work if it is presented as an obligation they have to avail themselves of”. 

If the assessment of ‘work capability’ had been developed with disabled people and their organisations (such as Shaping Our Lives, the UK DisabledPeople’s Council, People First, and many many other national and local user-led organisations), the assessment tools and process would have been based on the reality of the experience of being ill or disabled and on what really gets in the way of being able to work.  The failure to involve disabled people means the policy will inevitably fail in its aim of increasing employment. It is not only that too many assessments get it wrong, resulting in high levels of appeals, but that when people are identified as needing support in order to get a job, the action which follows has very poor outcomes. Amongst those who were in work prior to claiming Employment and Support Allowance, only one in four had found a job 12-18 months later; for those who were not in work it was less than 1 in 10.

On the one hand, government has recognised that better policy outcomes are achieved by involving disabled people and their organisations – something which is also backed by legislation.  On the other hand, significant policy shifts are happening with no involvement of disabled people at all.  Ian Duncan Smith and his civil servants should pay more attention to the investment which has already been made in disabled people’s user-led organisations, and work with them to co-produce policies which have a better chance of delivering good outcomes.