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Building a National Voice of Disabled People conference report

Our second Conference considered how we can build a strong and loud national voice of disabled people.

Given the affects of social security reforms, local government spending cuts, the rise in incidents of disability hate crime and the continuing lack of employment opportunities there has never been a more important time for the voice of disabled people and people living with long term health conditions to be heard.

Chair’s introduction and welcome

Phil Friend

Disability Rights UK Chair Phil Friend began by mentioning Breaking Free, which was on BBC4 last night and which tells story of disabled people's battle for equality since WW2.. He contrasted his own experience as a young man with the situation now.

Phil doesn’t remember worrying about having enough to eat but with current benefit changes he thinks some disabled people are placed in the position of going hungry. He worries that the disability movement is in danger of going backwards in terms of social care, building accessibility and benefit provision.

Concluding, he said that we need to be united. He also made a plea for members to make their views known so that Disability Rights UK can hear your voice and respond to your needs.

Disability Rights UK does a great deal of work at parliamentary level but relies on you to give us a clear account of what is happening locally and what you want or need from us.

basically there are two questions:

  • What can we do for you locally?
  • What can we do for you nationally?

From civil rights campaigning to defending our gains and moving forward

Sir Bert Massie, Roger Berry and Lord Chris Holmes

This was a panel consisting of:

  • Sir Bert Massie, Disability Rights UK ambassador
  • Lord Chris Holmes, Paralympian

Chaired by Roger Berry, Disability Rights UK trustee

Bert Massie examined the past, present and future of the disability movement.

He saw the 1950s as essentially paternalistic where disabled people had no rights and no specific disability benefits but basically "got what they were given".

The 1960s was the beginning of an acknowledgement of disabled people's rights as the Chronically Sick and Disabled People's act (CDSPA) was published. There were also a number of court cases related to building accessibility.

The 1970s saw the beginning of the disability movement led by disabled people as well as the first disability specific benefits.

The 1980s saw a snowball effect with civil rights campaigns, building access regulations, education reform and campaigns for a Disability Discrimination Act (DDA).

The 1990s saw a consolidation of these gains.

The 2000s saw the creation of the Disability Rights Commission.

By contrast, this decade is proving to be the most difficult with many previous gains under threat. Benefits are being withdrawn. The Independent Living Fund (ILF) is being wound up. At the same time the Government is proving adept at avoiding engagement on these issues. For example the Government abolished ILF on the grounds that local authorities would assume responsibility. By the time it becomes obvious that local authorities cannot do this the Minister responsible has changed Department and the new Minister does not engage.

The present also sees a reduction in access to social care reduced as well as changes in the rules related to accessible housing.

His view of the future is pessimistic. He sees no adavncement in disability rights but recognises a need to defend what we’ve got. He puts his faith in developing stronger user-led organisations as well as reconnecting with parliament so that we can challenge Ministers statements. This will be difficult in the future because of future legislation such as the lobbying bill which will mean that charities cannot lobby for one year before an election to challenge statements.

Chris Holmes cited two examples which highlight the best and worst of attitudes to disabled people. Firstly last summer’s Paralympic games put disability on front page in a positive way and with positive impact.

Secondly the disability race harassment enquiry highlights the bad about society.

We have plenty of challenges but on the good side we have the Equality and Human Rights Commission and we have the rights that are already established. To achieve more we need:

  • collaboration - the Paralympics sold out.
  • cohesion - new media and social media are a great tool but they need to be threaded in.
  • commitment
  • communication - this must be at every level, Government, local authorities and user led organisations.

He believes that what holds true for the past holds true for today and if there was true equality there would be 2 million more disabled people in work today.

Disability Rights UK’s young people forum

Paul, a member of Disability Rights UK’s young people forum

Paul, a member of Disability Rights UK’s young people forum is from Newham. He is passionate about getting the voice of young disabled people heard. Liz Sayce has been working with the forum to secure rights on employment issues and make a difference to disabled young people's lives.

He sees education as providing an opportunity for a successful future. Paul was in a mainstream school and faced barriers. He feels that education staff need awareness of deafness and disability and disability issues. Many disabled people need additional support to achieve parity. Disabled people face barriers and discrimination but can achieve much. Despite the problems he faced Paul has a BA in politics. Sign language is his first language and University was hard at first but he is proud of what he has achieved.

Tony Blair said “Education, education, education”. It is important that barriers are broken down to achieve this goal. Training is needed to change attitudes. Goverment and local authorities need to work with disabled organisations to achieve this. They need to respect each other.

He is also a great believer in volunteering and empowerment. He has been on the diversity panel and been involved with the Paralympics. He advocates volunteering. In his case he has travelled a lot and learned a lot. Many organisations can offer this experience. It is also good for your CV.

Networking is also important as you can develop opportunities this way. He has attended many conferences and events and there is always something new to learn.

He sees problems in relation to access and discrimination but believes that with experience and by being assertive and empowered you can succeed. In this respect role models, such as those in the Paralympics, are important.

We need to influence Government to take action to get jobs for disabled people. Equal opportunity is vital.

Don’t give up on your dreams to realise your full potential.

Building a national voice for independent living

This was a presentation by Sue Bott

You can view Sue’s presentation as a PowerPoint.

Our voice on careers and employment

Liz Sayce

You can view Liz Sayce's ’s presentation as a PowerPoint.

Panel discussion – Building our Voice

All of the speakers took part in this panel discussion

Q1 With regard to the work programme, front line staff and DEAs are poorly trained to advise.

A1 Chris Holmes replied that national schemes don’t work because they are all about numbers. Support needs to change for those who want to work and those unable to work. Those who can do some work but not full time are losing out. 

Q2 There is a dilemma for those who believe in the social model of disability but who now face issues of poverty and ill health. When we talk about work there are deeper issues such as the fact that those with fluctuating conditions are not attractive to would be employers. We need to start to think about flexible ways and a re-imagining of the work landscape. There is a reason why people cling to the sickness label. They want to work but are realistic so how can work be redesigned?

A2 Bert Massie said that we need to go back and consider the options. The state needs to acknowledge the contribution of disabled people. Liz Sayce suggested that possibly pooling resources to meet work needs might be a solution. Perhaps also the Government could provide temporary support, during illness, to encourage employers to employ those with fluctuating conditions. We must look at what is feasible. With better support illness might be less of a barrier.

Q3 Not a question. There is a need to re-examine budgets so that there is more support for young disabled people into work.

Q4 Not a question. The lady qualified as a fitness instructor under a fitness programme. She wanted to advertise this as a possible career opportunity. 

Q5 The questioner highlighted a problem with a council recruitability programme where those who signed on for it were subsequently made redundant.

A5 Roger Berry said there needs to be two things in relation to such programmes. Jobs have to be there. The reality is austerity destroys jobs and support is being cut whilst there are also less jobs out there. There is a limit to what training and preparation can do. If we can rescue bankers why not the unemployed.

Q6 Disability Rights UK should sign up to the Reclaiming our futures manifesto. The questioner was disappointed that inclusive education had not come up – ALFIE would like to see Disability Rights UK show public support.

A6 Sue Bott welcomed the manifesto. Disability Rights UK offered to be involved but were informed too late. The message to take from this is that we do all need to work together. Disability Rights UK likes some parts of the manifesto but feels some could go further. Disability Rights UK supports this manifesto  and recognises it is viewed as a work in progress. Disability Rights UK is happy to get involved in future.

Liz Sayce said that the Disability Rights UK Board debated inclusive education and supported initiatives. However, because of resources, we are more focused on children and families.

Judicial review and legal aid

This was a presentations by Alex Rook, Irwin Mitchell Solicitors.

Alex talked about judicial reviews and the legal aid situation. Judicial Review is a means to challenge decisions by a public authority – on the grounds it is unlawful, for example a council's failure to properly follow an assessment process.

Alex specialises in challenging decisions on disabled children and independent living issues.

To clear up any misconceptions he stressed that currently

  • Judicial review remains
  • Legal aid remains for independent living issues

However because of Government messages there are misunderstandings which mean that less cases are brought.

Alex’s has prepared an information sheet which summarises the current situation and indicates future changes to legal aid and judicial review.

You can see if you qualify for legal aid by using Gov.UK's online calculator.

Future changes to legal aids may restrict it in relations to prisoners, borderline merit cases, people with residence qualifications and by reducing lawyers fees. This will lead to a reduction in judicial review cases.

There are also proposals for judicial review to restrict organisations right to bring a case, restrict cases on procedural impropriety, separate cases concerning the public sector equality duty and transfer financial risk to solicitors.

Building and communicating with our membership

Sue Bott and Liz Sayce

Liz Sayce began by saying:

  1. We think that there are many other out there who could benefit from being a member of Disability Rights UK– we appreciate your thoughts and help with this.
  2. We are serious about getting our message across. We want as many organisations but we are particularly interested in recruiting individuals who are essential in enabling us to represent disabled people’s interests. If each member recruited ten others it would build our and your voice.

Comment from the floor: There is a disconnect between disabled people who work from social model and those who not agree with everything Disability Rights UK does. We don’t want a situation where those who are poor and ill and unable to work feel that Disability Rights UK can help them.

Liz's reply: Maybe the message could go out in blogs. A large amount of our work, such as our free factsheets supports those very people but we need to emphasise this.

Sue Bott said that we have a very democratic structure but we need to open out and engage more though we are hampered by resources.

Comment from the floor: £27.00 is a lot of money for people on minimum wage income.

Phil Friend's reply: This is an important point that we will discuss but there is the problem of money. If we had charged  pound for each download of our free factsheets e would not have this conversation. The challenge is to get more members, say double what we already have by this time next year, so that we are more united.


Workshop 1: EHRC engaging with disabled people on the UN Disability Convention

This workshop was run by Sara Brunet

The Equality and Human Rights Commission (EHRC) asked for views on the priority disability issues that need to be reported to the United Nations in their examination of the rights of disabled people.

EHRC published a questionnaire, which has now closed to enable them to make a submission on the 'list of issues' that they want the UN Disability Committee to consider.

To find out more go to the Equality and Human Rights Commission website.

You can view a PowerPoint presentation about this workshop.

Workshop 2: Commissioning disabled people’s organisations

This workshop was run by Sue Bott

Background – The Government is moving away from grant provision to tendering, which has affected local support due to tenders from national organisations. This is a particular a problem for community based organisations such as those for women and black and ethnic minorities.

The aim of this workshop is to develop a strategy to deal with this.

Sue asked for good experiences of commissioning.

Example 1

The Birmingham area had a high work programme fall out with failures to secure jobs. The response was to put together a consortium of 60 organisations to meet this problem. It took time but the consortium began to get funding in the Birmingham area. The advantages of this approach were that it:

  • was collaborative
  • built good networks
  • cross fertilises ideas
  • reduces overheads
  • is more effective
  • becomes stronger once embedded as because of the risks if it is not supported

Example 2

An organisation had competition from a non-local user led organisation so small organisations petitioned the local authority to consider only using local support in tender – which they did.

Sue said that Disability Rights UK were approached by company to bid for local support based schemes but we would not bid if there was a local based organisation already there. We prefer to support and build up local organisations to so they can bid.

Example 3

Kent ULO is struggling. Could DRUK bid and then work on raising up Kent? Sue said yes.

Example 4

Good network relationships were important - Example from Oxfordshire.

In Bucks they face similar issues but sometimes it is necessary to be an agent of change within and without organisations.

In Surrey there are good partnership working between ULOs and Local Authorities.

A suggestion was made for Disability Rights UK to draft partnership agreements. Another view was that partnerships can take a long time to set up and that Disability Rights UK  could help with the preliminary work.

Where money is involved it is important to have the correct agreement. Different organisations may have different levels of protections but overall good financially.

Sue then went on to discuss the Public Services (Social Value) Act. This was a private members bill by Chris White MP. The Act talks about contracting based on social values rather than based on decisions of cost. You can read a useful blog about this.

Sue stressed that this Act will only be influential if we make use of it.

The blog stresses engagement and partnerships with support from umbrella bodies but it is sometimes difficult to work with ‘big players’. Disability Rights UK gets approached on this and the issue is much discussed by our board. We may enter into partnerships if our independence is not compromised.

We need to demonstrate that we are engaging with disabled people by producing clear, simple evidence. We need to be aware of what information needs to be collected. Going on a course is a good idea. It is better to have a system in place. Some organisations produce social accounts though the measurement of these was not known.

It was suggested that it in the initial stages complaints might increase as people engage.

Disability Rights UK would like to thank photographer Susie Chaves for her photographs recording this event.