Rethinking Disability Policy: Taking the discussion forward with disabled people written by Becki Meakin and Peter Beresford
Full report: RETHINKING DISABILITY POLICY JRF REPORTS

Summary of Key Points

• Welfare reform is having destructive and wasteful effects across a wide range of disabled people. Participants see the welfare state as being undermined
• The meaning of ‘independent living’ which has been a rallying cry for disabled people to live in the mainstream and contribute like others has been undermined by government rhetoric and policy
• It is important to value diversity and see the contribution it can make to increasing a sense of solidarity and worth among disabled people, but current policies are having the opposite effect
• While the policy talk emphasizes getting people into employment, barriers have not been addressed, opportunities are restricted and a one size policy doesn’t fit all
• There are mixed views about direct payments and personal budgets, which can increase life chances for some but budgets are being cut at the same time as collective services are being lost leaving people isolated
• Having had a rare opportunity for an inclusive discussion to rethink disability policy, participants next want the opportunity to discuss possible strategies for the disabled people’s movement to improve it.

Introduction

This national meeting held on 12 September 2014 was convened by Shaping Our Lives to enable a diverse range of disabled people to explore the key points of the Joseph Rowntree Foundation Viewpoint, Rethinking Disability Policy, by Jenny Morris. For many disabled people there are few opportunities to have their own discussions at policy and strategic levels. The aim here, taking Jenny Morris’s report as a starting point was to provide just such an opportunity at a time which many disabled people experience as difficult, changing and full of uncertainty.

A group of nineteen disabled people came together for this discussion. They included a very wide range of disabled people, including people with physical and sensory impairments, people with learning difficulties, mental health service users, older people, disabled parents, people with long term conditions and multiple impairments. The group also reflected diversity in terms of gender, ethnicity, culture, class, belief, sexual orientation and age. Participants were involved in local as well as national organisations. While some might be identified as leaders, others reflected the more general situation and experience of disabled people. All had had the chance both to see Jenny Morris’s paper. This had been circulated four weeks in advance. On the day a short handout was circulated which had been prepared in advance, providing an overview of key points from the Jenny Morris Viewpoint report to support the discussion. This was organised around five main topic areas. People with learning difficulties involved were additionally assisted by a skilled and experienced supporter. Detailed notes were made of the discussion and this report was prepared using them as its basis.

The discussion took place over an afternoon in an accessible meeting place with refreshments provided to help make it a positive and enjoyable experience. It should be stressed that while many different points of view were expressed and there was not consensus on all issues, there was a great sense of common concern and a strongly expressed shared commitment to work to improve the lives of disabled people and to improve policy and practice affecting them.

Underpinning issues

It may be helpful to highlight some key contextual issues which emerged during the course of the discussion

• While new disabled people’s and user led organisations (ULOs) are emerging, at least as many are being lost through lack of funding. This is weakening the voice of disabled people at a time when it is particularly needed.

• This seems to be a time of major differences and divisions within the disabled people’s movement, as new groups develop, new ideas emerge and new forms of engagement, notably social networking become established.

• Disabled people broadly defined are being badly hit by cuts in specific disability policy, cuts in mainstream services and also in benefits through so-called welfare reform. This is having damaging effects unprecedented in modern memory.

1. Welfare state: how cuts are impacting disabled people

The group discussion started by coming to broad agreement on two issues from the Viewpoint report:

• The change of Disability Living Allowance (DLA) to Personal Independence Payments (PIP). This new welfare benefit focuses on medical solutions, so moving away from the valued social model of disability.
• The ending of Incapacity Benefit (IB) and its replacement with Employment and Support Allowance (ESA) – which assumes people can and want to be in paid work, despite the problems associated with this.

For the most marginalised groups, DLA has offered essential support, ability to get about and freedom from isolation. Although it was mentioned that people over 65 years old had not been affected by a change to DLA, it was apparent that many people (even those in this age group) recognised that the resulting lower financial support received in PIP benefit was noticeable among peers and disabled people in their communities. It was suggested that the government had not transferred people over 65 years old to PIP because they were an important voting contingent.

“When you approach 65 people who have been awarded benefits for life are now being re-assessed. Still young at 65 but could lose lifeline of say a mobility car.”

Although these welfare benefit changes have been openly publicised, the group raised concerns about the many ‘hidden’ welfare cuts that had taken place since the Coalition Government had come into power. For example, the lowering of tax credit thresholds and the abolition of housewives non-contributory allowance have reduced the financial resources of disabled people. Some welfare benefits have been lost through renaming and moving them to another area, for example, severe disablement allowance has been incorporated into Incapacity Benefit and there has been no protest. For visually impaired people, the impact of stopping indefinite DLA is not yet known, but it is clear that the under occupancy tax (or bedroom tax) has left many people having to pay the additional cost because they are unable to move away from their support network.

The point was also raised that for people who have learning difficulties, there is pressure to do work that is judged to be ‘appropriate’ but it is not work that people with learning difficulties would choose to do or are interested in doing. If they are unwilling to do work that is not of interest to them this can be seen as them being ‘ungrateful’ or ‘undeserving’.

“I do not want a job in a shop or catering. I want to work with people who are disabled. They want us to do other jobs.”

The discussion moved on to broader aspects of societal change and it was recognised that disabled people are living in very different times to when the philosophy of independent living was first developed.

First, there was agreement that the current government has re-defined who is a ‘disabled person’. There has been a strong shift towards the medical model of disability, away from the social model and that this needed to be challenged and redefined.

Second, there was a strong feeling that welfare cuts are affecting everyone, not just disabled people, and we have dramatically moved away from the ethics and country we grew up in. The welfare state was created after the Second World War and is slowly being stripped away bit by bit with disabled people inevitably suffering disproportionately.

Third, it was felt that there is an emphasis on ‘the deserving’ and that this unhelpful rhetoric is very influential. There is worrying evidence from the criteria used to assess people in Work Capability Assessment (WCA), gathered in investigations such as Tyneside, and from appeals demonstrating this philosophy of ‘the deserving’ is operating in practice. There needs to be a challenge to the way this language is becoming more widely accepted.

“There are no ‘deserving’ with this government”

The point was made that the welfare cuts are indiscriminate and even people who are dying are in the same laborious and slow process trying to access help to manage their welfare support and may not receive their benefits before they die. These are planned policy decisions that inevitably affect older disabled people in particular. There is a re-distribution of wealth from poorer people to the wealthy, who have the money and power to be shaping change in our society.

2. The future of Independent Living

The discussion began by clarifying the meaning of Independent Living. This is taken to mean disabled people having the support they need to live life on as equal terms as possible with non-disabled people and barriers being removed to make this possible. This was contrasted with the often implied meaning that people stand on their own two feet, but possibly still having to live in isolation, restricted by social, cultural, economic and physical barriers.

There was some disagreement with the Viewpoint report in that it was not seen as disabled people who had created this confusion, but that it had been misunderstood by policymakers and society in general. The campaign for Independent Living was a reaction against oppression. The term and associated language has been taken by this government and perverted. They have turned independent living into just being about the provision of individualised services.

It was suggested that disabled people are asking for the power to live within society in the way we want to live; with recognition of the barriers to that because of society itself. It is about exercising power, choice and control. People want a say. Asking people if they want this is not giving them a choice. For people with learning disabilities, the barriers to Independent Living are being increased because support is being reduced and there is less permanency of care staff.

“We need people who we are used to working with/comfortable with.”

The point was raised that disabled people are left with the legacy of Independent Living, a concept that we now know much more about than 30 years ago when it was first introduced. When it was developed the meaning was not explicit and selective interpretations of it now need to be challenged. It was also argued that other groups such as older black and minority ethnic communities adopted alternative terms such as ‘holistic living’ but these have not been more robust and their communities have not fared better.

The Viewpoint report raises the issue of co-production and it was felt that if a person is involved in designing the choices they have, and given a range of choices, this would create more self-autonomy. However, co-production was only seen as a positive if there was equal power between the disabled person and the agency or service involved.

“If you only have two choices that are not relevant to you then this is not enabling control of your life and how you wish to live it.”

The discussion moved to the current emphasis on all disabled people being in employment. Concern was raised about diversity and that one solution does not meet everyone’s needs. For some people, sheltered work and protected environments are preferable to inclusion. Although the Viewpoint report addresses the wider context of personal choice and direct payments in a collective society, a participant responded by saying that was not their experience of the system.

There was a strong sense that legislation like the Equality Act 2010 and the Disability Discrimination Act 2006 were based on a medical model of disability and this undermined the language and meaning of independent living and the social model, helping to manipulate disabled people.

“Yes we are manipulated. We need to find words to express what we want to happen.”

In response it was argued that severe cuts, job shortages and poverty are preventing disabled people from using their voice in the way they want. There is still a sense of a postcode lottery for service provision and a consistent need to educate the people who are in control of allocating these services locally. People also voiced concern about declaring their impairment or experience when looking for work.

“They keep on telling us to get a job but employment is bad. We will be the last candidate and in the worst conditions. They don’t even want us packing shelves.”

Participants agreed that we need to be clear as a community about our language and what it means and communicate this. Reference was made to JRF published report by Shaping Our Lives ‘Our Voice in Our Future 2003’ findings and possibly republishing these to support this point.

3. Valuing diversity in local communities

The discussion began around service user involvement in local authority planning processes. Participants felt that it seemed as though the brakes were put on three years ago and now involvement is limited both in terms of its remit and the people involved. However, others reported active work, for example, by their local Clinical Commissioning Group (CCG) and it was concluded that the situation varied by locality and was dependent on the vision of the policymakers involved. Involvement is important and good examples need to be promoted which is difficult in times of scarce resources.

Some felt there was a conflict between acknowledging diversity which may be seen as emphasising differences and can lead to ‘divide and rule’ policy decisions. It was argued that diversity needs to be recognised in a communal context to give strength and solidarity to the disabled community.

There was also a feeling that we can be diverse without separation and that the real definition of diversity is to recognise and value difference. The analogy of a patchwork quilt was used, bringing everyone together while appreciating the differences. But someone also made the grim joke;

“There has been real progress for equality in the even handed way that the government has attacked all groups.”

4. Barriers to employment

The group began by discussing the general employment situation. Some felt the system was very biased and needs to fundamentally change in order for disabled people to have an equal opportunity in employment. The general economic trend is to get the most from people for the least amount of reward and this is a very difficult model for disabled people to compete in. The unemployment trends detailed in the Viewpoint report have deteriorated due to cuts shrinking the employment opportunities with traditional ‘reliable’ employers for disabled people such as local authorities. This is further aggravated by a trend for generic job descriptions not allowing you to demonstrate strengths in certain areas.

“I worked in the area of employment support and attended job search seminars. All these people helping us to find jobs are getting rich off us. We could be doing these jobs.

Although it was agreed there were the same common barriers, there was a comment that these personal stories were difficult to reflect on at a meeting of people from many different localities because experiences vary greatly. However, a point was raised about a supported work programme that someone had taken part in, but the type of work was not of interest or appropriate for them, although there was an expectation they should be happy to be in work, whatever it is. Someone raised the idea that there is ‘good’ work and ‘bad’ work. Good work is work that improves people’s mental and physical state; bad work can be detrimental to your health. Current government policy assumes all work is good work. However, there was a sense that now there is little choice for many people:

“many people don’t have the umbrella of disability to fall back on who do awful jobs. Be more positive. We are in very hard times.”

The group then discussed barriers to employment, in particular discriminatory job requirements such as ‘must be able to drive’. People with learning difficulties may not be able to read and write so finding suitable work can be very difficult. Several people reported that the ‘back to work’ programmes were not accessible.

One participant had interviewed 200 people as part of a study about the barriers to employment. All 200 disabled respondents said ‘I would like to work’. The barriers preventing them were to do with the structure of work, for example, a nine to five working day, travel by public transport and access to city centres, poor attitudes from colleagues, the choice of either benefits or salary. It was felt that the change needed to remove these barriers was difficult for any government, but that the disabled community should prioritise the key issues for change. Further cuts to mobility benefits such as the free bus pass will make employment even more inaccessible.

Participants felt that local authorities had missed the opportunity to improve social care service efficiency and effectiveness by not employing disabled people who had relevant experience in decision making roles. Instead, they have focused on endless service user consultations, where people are often expected to give their expertise and time for free or for a token payment. There is a general lack of ambition for disabled people, particularly for work opportunities.

“I remember 22 years ago when I said I wanted to work with children. I was told that someone like me did gardening and women do washing up.”

5. Adult Social Care

There was a strong view among participants that adult social care is still based on a very prescriptive model. What is needed is a flexible, holistic approach that can be tailored to an individual’s needs. However, participants feel that local authorities are still working to a list of what can or cannot be accessed according to your condition.

Participants share the worry that we are on the road to privatisation. Local authorities have or are closing the services that support people. There may be a few individuals who benefit, but for many this is a terrible loss of services. Marketization of social care services as referred to in the Viewpoint report, people feel, has changed service users into commodities who have less influence and choice over the services they use.

One participant described how having direct payments had enabled her to develop a care system that met her needs. Prior to this, care and support staff had only been able to visit her during office hours when she was out at work. However, it had taken two years to secure direct payments and now most support packages are being severely cut. As carers will also become eligible for social care support how will the diminishing funding meet the additional costs?

Other people supported the view that direct payments were a positive thing if someone is given sufficient funding to support them and there is a choice of ways for them to do this. However, great concern was raised about this system being used for health services which are meant to be free at the point of delivery. There was also talk of how in the past condition related services, for example, Alzheimer’s, had largely been moved out of the NHS into social care. The reality is that there will be more and older people and people with learning difficulties and with chronic conditions because people are not dying of these conditions as they did in the past. There will be more of us disabled people and service users and we need to care for our future together.

What next?

Participants said that they found the discussion very stimulating and it raised a number of key questions for them:

• Is the voice of disabled people being heard at local and national policy level?

• How can disabled people make effective system changes?

• Has the meaning of our language and terminology, for example Independent Living, been lost?

• How can we redefine the values of the disabled people’s movement?

It was agreed that the group would like to have an opportunity to rethink the strategy of the disabled people’s movement for the future and that further funding should be sought to follow-up this discussion for a further meeting with the Joseph Rowntree Foundation.