Jan 182014
 

Having become aware that there seems to be some confusion about People First groups operating in England Disabled People Against Cuts invited People First (Self Advocacy)’s Director Andrew Lee to set the record straight:

People First (Self Advocacy) is a national, user-led self-advocacy organisation, run for and by people with learning difficulties.  People First has been operating for 27 years.  The constitution says that the number of members of the company is unlimited, and can be individual members – any person with learning difficulties, 18 years or over, and group members, which will be organisations run by people with learning difficulties.  People First has a national membership of 101 self-advocacy group members and 150 individual members; the spread of members is national, covering every region.
The Charity Commission entry for People First states:
Activities
PEOPLE FIRST IS AN ORGANISATION RUN BY AND FOR PEOPLE WITH LEARNING DIFFICULTIES TO RAISE AWARENESS OF AND CAMPAIGN FOR THE RIGHTS OF PEOPLE WITH LEARNING DIFFICULTIES AND TO SUPPORT SELF ADVOCACY GROUPS ACROSS THE COUNTRY.
Where it operates
THROUGHOUT ENGLAND AND WALES

Having set the record straight, some people may say it is easy to say People First is a national organisation, but ask where is the proof?  People First’s response would be the we have a long history of working nationally with groups and individuals, and we would really like to share with you and your readership the detail, depth, quality and impact of our work, both in terms of campaigning with and on behalf of our national membership, and in supporting self-advocacy groups to build their capacity and become strong groups.
This is a summary of our current work:
1. Policy and Campaigning
We are working with a large range of organisations to make change happen for people with learning difficulties on all of the key Government changes affecting our members.  This includes local self-advocacy groups, SCIE, Inclusion London, the Equality and Human Rights Commission, DPAC, ALLFIE, The Mayor’s Office and many other national and Government organisations.  As well as this many other organisations come to People First for advice and support, For example, this week we have carried out some work on behalf of the Equalities and Human Rights Commission, to make sure that people with learning difficulties can give their views to the United Convention on the Rights of Disabled Persons, about the most important areas for the Government to work on; we worked with York People First and Bristol and South Gloucestershire People First, as well as our national Board of Trustees.  We work with organisations, but as well as this we make sure that we are in touch with our membership and that we are campaigning out on the streets.

2. Cuts Impact Action Now Project
We have also set up the Cuts Impact Action Now Project (CIAN).  The CIAN project, funded by Trust for London, is an evidence collection project looking at what impact both local authority and national cuts and changes are having on people with learning difficulties in Barnet.   This project is a pilot project starting in borough of Barnet.  We are working in partnership with People’s Choice at BCIL.  We are piloting a way of collecting evidence that can then be used in other London Boroughs and nationally.
The reason that we are running this project is because there are lots of national and local changes and cuts happening at the same time.  There has been no research or evidence collected about what impact all of these changes together will have on people with learning difficulties.  We are worried about what this will mean for people and we want to make sure that the voices of people with learning difficulties are heard.  We want to make sure that any cuts or changes do not have an unfair impact on people with learning difficulties.
We want to pilot a way of collecting evidence so that eventually all self-advocacy groups can use this to collect their own local evidence.  We know that cuts and changes are very different in each local authority as a result of the Localism Bill.  This is why a project like this will support local self-advocacy groups to campaign with solid evidence in their local area.  We will also support them to campaign nationally.
3. Supporting Self Advocacy Groups
Our work was very public during the years that we ran the National project and when we were part of the Disability LIB project.  During this project we capacity built 30 organisations.  These organisations were all members of People First (Self Advocacy), but they were not all called People First.  They included Speak Out groups, SHOUT groups as well as other local self-advocacy organisations that had completely different names.  To be a member of People First (Self Advocacy), a group does not need to have the ‘People First’ name.  It just needs to be a self-advocacy organisation run and led by people with learning difficulties.
Since this Big Lottery funding ended, it has been very difficult to get funding for this “second tier” work.  We therefore offer a more low key type of support, such as training, consultancy and research. During the past year we have supported 6 local self-advocacy groups with things such as Management Committee training, consultancy on the future of organisations, fundraising and support with other issues that groups have been having.
4. Advocacy Signposting and Advice
We offer a telephone service to all people with learning difficulties and their carers and supporters.  With all of the cuts to advocacy services and support services happening many people that are going through very difficult issues do not have anyone to turn to.  We offer this service so that anyone going through an issue can come to us and we will support them to get the information and support that they need to move forward.  People have come to us with issues around debt, benefits, getting support, getting advocates, problems with local authorities, hate crime and many other areas.  For this project we have been included on the SCIE Find Me Good Care website, as an organisation offering support and advice to people with learning difficulties, their carers and supporters.  We use our core funds to cover this work.

5. Easy Read
We have a long term campaign of making Easy Read more well-known and better used.  With the support of the Facilitation Fund from the Office for Disability Issues we putting together a service to make sure that there are no excuses for not using Easy Read.  This is so that anyone can have the tools they need to put something into Easy Read.  We have already put together Easy Read training and we are now using the fund to design a new and improved Easy Read Picture bank.  We also provide an Easy Read translation service for a range of Government, local authority, and voluntary sector organisations.
In Conclusion
With the change in the political climate, and funding priorities, like many charities we have had to review our position and develop new strategies and plans.  Our new BIG PICTURE approach to how we move forward is that all the work we are now doing could be described as taking a strategic approach, that is not just being out there strutting our stuff, but putting plans in place to make sure:
The work we do takes into account the need for major structural change, that means in the way systems and policies work at a local and national level, which will make a real difference to the lives of people with learning difficulties
The work we do takes into account the Localism Bill, and will put information, power and control back into the hands and voices of local people with learning difficulties
The work we do has a major impact to benefit the lives of people with learning difficulties who are often excluded from the debate and that’s why our organisation has led the Self Advocacy Movement for 27 years.

Jun 032011
 

Indications of shock and disbelief came from all quarters of social media from watching the Panorama program Undercover Care: The Abuse Exposed. While I had to force myself to watch, it was sadly not news for me. Like the whistle blower, disabled people have long been voicing our misgivings about how people with learning difficulties[i] bear the brunt of disability hate crime. It is not so long ago that Fiona Pilkington committed suicide [ii] because she could no longer bear the abuse; she contacted the police no less than 13 times in the year of her death.

When a case such as the Panorama program highlights these real occurrences, there are knee jerk reactions and  righteous noises about the support workers – and rightly so, some of them were arrested. But these abuses are, sadly, not rare and it also misses the crux of the issues.

These support workers were working in an environment (and society) which has no respect or regard for disabled people. They see them as ‘patients’ to be restrained and vent their boredom in bullying and abusing the people in their charge to pass their time. There was no supervision, no managerial support. It’s all very well to vilify them but there are some bright ideas afloat that unemployed people should be sent ‘to serve the community and take care of disabled people’. Disabled people are held hostage by the label as the ‘most vulnerable’, as subjects to be ‘taken care of’ and also, in this scenario, as punishment. Support workers are badly paid and as we can see in the program, scarcely trained. I am fortunate enough to know many support workers who care about the people they support in the community but these sterile ghettos/ care institutions where people with learning difficulties are kept locked up are not the type of places they would chose to work given a choice. These ‘inmates’, because that’s what they are effectively are rather than patients,  are not for all intents and purposes, ill. They are disabled people. Moreover the  treatment meted out to them by being kept in such institutions causes additional mental health issues.

Clare Wrightman, Director of Grapevine, Coventry, a charity that helps people with learning disabilities to grow their lives tells us:

‘As an advocacy organisation we know that people with a learning disability are on the receiving end of abuse and ignorance, especially in the new institutions. In the Panorama expose independent advocates were completely absent. Our workers are a vital part of safeguarding the most vulnerable.
Why did we close long stay institutions run by the State as part of government policy only for local government to commission new ones from the private sector? People can be supported to live in their communities close to the people who really care about them’

Ellen Clifford, who has worked within the People First movement said:

One point I do think needs to be made is how traditionally there is such a risk averse approach to support for people with learning difficulties, favouring segregated institutional based care. This programme shows  the extent of the dangers that are faced by people placed in exactly those type of settings that are purported to be safer for them as opposed to being supported to live independently in the community.

She continues:

the Quality Care Commission (QCC)  clearly failed when it was given evidence of abuse on a plate which it ignored. There needed to be improvements in its systems. However as Panorama rightly identified, the core issue is that locked institutions should not be allowed to exist. The programme at times described people as “not being able to look after themselves” and as having the mental age of children, however that approach fails to recognize the abilities, talents and contributions which all people with learning difficulties have; as one of the programme experts said at the end, there is no reason why any of those people could not live better in the community with support.

The privatisation of care homes must be seen as a factor contributing to the existing abuse at places such as Winterbourne. Private companies are seeking to make a profit from an industry which is already severely underfunded, the outcome can only be inadequate quality of support with the subsequent incidences of abuse. Supporting people with challenging behaviour is a complex and difficult job which requires intelligence (high levels of both IQ and EQ), understanding and training. You do not get support workers with that mix of skills and attributes for the kind of wages that the the so-called care sector pays. Not when you consider the executive salaries which are also paid out to the Directors.

The coalition government is pushing for a Big Society but without state intervention and regulation to ensure people get the support they need, there is every danger, as the Panorama programme provided evidence, of cultures of abuse becoming more widespread and accepted.

The programme highlights the key value of user led organisations: one of the experts described how the staff cannot have viewed the patients as “human beings just like them” in order to have engaged in the treatment they did. Where disabled people are visibly part of service commissioning and provision we can provide a constant reminder that we are indeed people just like them. If we don’t want people in our society to be abused as seen on Panorama then society needs to invest in our organisations.

Jim Mansell from the Tizard Centre, Kent University was one of the experts in the programme. What is highlighted on the Panorama programme is already detailed in a chilling report by him and his colleagues.[iii]

What we want to know is when is this austerity driven government going to see that this privatised, institutionalised care is not cheaper but that it costs disabled people and their families dear in depriving them of their human rights to live independently with support in the communities that includes them.

—-Eleanor Lisney


[i] Disability hate crime needs to be tackled  http://www.guardian.co.uk/society/2011/jun/01/disability-hate-crime-keith-philpott

[ii] Fiona Pilkington case: police face misconduct proceedings http://www.guardian.co.uk/uk/2011/may/24/fiona-pilkington-police-misconduct-proceedings

[iii] Exploring the incidence, risk factors, nature and monitoring of adult protection alerts, Jim Mansell et al.

https://shareweb.kent.gov.uk/Documents/adult-Social-Services/adult-protection/tizard-report.pdf