Vote to stay in Europe – SPECTRUM urges

Over recent weeks, SPECTRUM Centre for Independent Living has been asked whether we would be taking a position on the EU referendum. We felt that it was important for people to know what impact Europe has had on Disabled People’s lives. We commissioned John Evans who was President of the European Network for Independent Living for 14 years to help us with task. His thoughts are below and we urge all voters, whether Disabled or not, to read what he has to say. Following this, and further discussions with the staff team and our Management Committee, we are supporting the ‘Stay in’ campaign.



The Advantages and Benefits for UK Disabled People Remaining in the EU by John Evans OBE

The focus of the debate on the EU referendum until now has been mainly on the economy, trade agreements, employment, legal issues and immigration. There has been hardly any key media coverage on Disabled People and their livelihood within or without the EU, except an article by Richard Howitt MEP in the Guardian.

This briefing paper is to make clear some key issues and benefits for Disabled People by remaining in the EU. I have had over 30 years of experience as a disabled activist being involved in Europe and want to share what some of those main advantages and benefits for Disabled People are.

Why Disabled People are stronger in Europe

The UK disability movement has prospered by being part of the wider international disability movement since the early 1980s when it was formed through DPI (Disabled People’s International). In particular, through being actively engaged with the European disability movement we have seen a wealth of positive changes happen which have improved the quality of Disabled People’s lives in the UK. We have been much stronger by working together with the European Network of Independent Living (ENIL) and the European Disability Forum (EDF) campaigning for independent living, equal rights and an accessible environment, which has enabled Disabled People to have a positive influence on the EU. Below are some examples.

The Rights for Disabled People in Employment and Freedom of Movement

Over the years we have seen many positive changes in combating discrimination and advances in strengthening equality for Disabled People and other disadvantaged groups. Working together with our European disabled colleagues we have contributed towards bringing in an important European wide non-discrimination directive, which protects the rights of disabled people in employment and enables Disabled People to work in other European countries. The EU also supports freedom of movement for Disabled People to live and work in other EU Member States. At a time that Disabled People in the UK are facing unprecedented levels of financial hardship and high rates of unemployment, we cannot afford to lose this hard won support.

Independent Living

The UK has been one of the pioneers in the development of the Independent Living movement across Europe. We have learned much from the many ideas and exchanges we have had with Disabled People in other countries and, together, have successfully influenced EU support for Disabled People having the right to control our own lives. However in the last five years we have seen some big threats to Independent Living in the UK with the closure of the ILF and the austerity measures affecting local authority budgets to support Independent Living. Our future for Independent Living would be stronger by remaining part of the EU and keeping the support of the European disability movement and the EU structures and policy.

Inclusion of Disabled People

The EU is also supporting Independent Living by the policy initiatives towards stopping European funding for renovating and building new institutions which segregate disabled people. Deinstitutionalisation is now a very positive development in encouraging the funding for more community-based services for Disabled People so they can live inclusively with others in local communities. This is an issue of vital importance for Disabled People as we have seen, for example with the terrible abuses inflicted upon People with Learning Disabilities in Winterbourne View and other care institutions.

European Social Funding

There has been much debate about how much the UK pays into the EU but little is said about the significant sums of money that the EU provides to support Disabled People and other disadvantaged groups in the UK. 87,000 British Disabled People were supported by the European Social Fund last year, helping them towards the world of work. For many years Disabled People have also been able to access EU funding to set up projects, organisations and conferences and a range of other support.  In addition, the legal exemption from EU state aid rules to allow public authorities to directly contract, provides an important boost for Disabled People to set up and run their own social enterprises. As funding sources in the UK become ever tighter, this European  funding will be a vital lifeline for  Disabled People that we can ill afford to lose.

Equality and Human Rights Commission (EHRC)

The EHRC has been subject to a barrage of criticism’s threatening its position, but it is protected by the requirements of being an “Independent body” laid down by the EU non-discrimination directives. Since the closure of the Disability Rights Commission the EHRC has been the main organisation supporting the protection of rights for Disabled People in the UK and this protection could well be weakened by leaving the EU.

European Accessibility Act

The forthcoming European Accessibility Act  will mean there will be a duty to make sure that all services and products will be accessible regardless of disability or age in the EU. This will include air, rail and sea passenger transport services, banking services, telephone services and audio visual media services. If the UK exited from the EU we would not benefit from this new act. We should also not forget that it was a European directive, which supported us getting accessible buses in the UK in the late 1980s onwards.

United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)

Although the UK government signed up to this UN Convention, which aims to protect our rights, it has been widely criticised for failing to properly implementing it. The EU has also signed the Convention and we would be better off having our rights protected with the support of the EU as well, due to the lack of commitment of the UK. It was the united voice of European Disabled People along with others from around the world which influenced the creation of the Convention and these are important rights that we need to protect.


In conclusion, these are just a few of our successes being in the EU. We want to continue to work together with our disabled colleagues throughout Europe with the support of the EU. We want to pull down barriers not erect them. We recognise discrimination does not stop at borders. We want to protect Europe’s very significant achievements for disabled people, and prevent others from being taken away and provide a platform for the further improvements for our future.

In today’s economy of austerity, where rationing and denial of services has become the norm, never discount the fact that the economic prosperity which comes from Britain’s membership of the European Union is vital, if we are to find the public services which many Disabled People believe should be theirs of right.

John Evans OBE

6 April 2016



SPECTRUM’s 30th Anniversary

This post is written by Ian Loynes, the CEO of SPECTRUM Centre for Independent Living.

This week is a momentous week for SPECTRUM

30 years ago this Thursday, Simon Brisenden called the first public meeting that founded SCIL (Now SPECTRUM)

​To mark this occasion, we have organised a​ ​30th Anniversary Conference on Thursday 6th November​ where we will be celebrating our achievements, and discussing the future of Independent Living​.

​We are having the whole conference videoed and this will be placed on our YouTube channel as soon as possible after the event, to allow you and THE WHOLE WORLD to share in what I will call ‘The SPECTRUM Effect’.

Our YouTube channel can be found at the following link:​
(If the link doesn’t work, search for SPECTRUMCIL on YouTube)

To whet your appetite, we have had two articles published in last Wednesday’s Guardian newspaper – We encourage you to read both as they nicely highlight what we have achieved, and the challenges and opportunities we have to face in the future.

The links to these two articles are:

On behalf of SPECTRUM, I ​thank you for your support and interest.

Tell us about the REAL impact of the cuts on YOU

wr-e1363788920449SPECTRUM Centre for Independent Living is launching a campaign to raise awareness of the real impact of the cuts in Hampshire and to try to influence a more realistic tone to the political and media debates. Most importantly, we want to secure a commitment from local MPs to consider a full or partial reversal of the cuts as soon as economic circumstances allow.

The campaign project will aim to work in collaboration with SPECTRUM members, User Lead Organisations and community partners throughout Hampshire and beyond. It will work with the media to provide regular updates and present evidence via Facebook, Twitter and SPECTRUM’s website. A key objective of the project will be to engage with local politicians to inform them of the real impact of the changes and cuts at a grassroots level.

We know that cuts to benefits and care and support are having a detrimental impact on the lives of Disabled People and other groups affected. But, public awareness of the scale of the problem and what it really means for people’s day-to-day lives is fairly low. There is also an added problem that what media debate there is has often been distorted by an unhelpful and misleading presentation of deserving vs undeserving benefit claims. Too often this portrays disabled people as ‘scroungers’ – which is both completely innacurate and grossly unfair.

We need to gather together the evidence to support this campaign – and this is where YOU can help.

We are seeking as many Disabled People in Hampshire as possible to fill in a structured diary for a short period (4 weeks or so) to detail the day to day impact of cuts they are experiencing. This includes both welfare benefits; Disability Living Allowance (DLA), Personal Independence Payment (PIP), Housing Benefit, Job Seeker’s Allowance (JSA), etc. as well as cuts to social care including the Independent Living Fund (ILF), and the impact of changes to charging for social care.

It should take no more than 5 minutes per day to complete the diary, and this can be done in either paper or electronic form. All participants will receive a £20 gift voucher for their involvement.

The success of this campaign depends completely on Disabled People in Hampshire taking part. Together we can make a real difference.

If you are willing to help the campaign by filling in a diary – or if you can help with distributing requests to take part via membership of your own organisation – please do get in touch. We will keep you updated about the progress of the project via our website, newsletter and social media outlets.

If you require more information please email:

Gerry Zarb, Research:
Berni Vincent, Campaigning:

Or call 02380-330982

SPECTRUM is here

On the 30th of January 2013, Southampton Centre for Independent Living officially re-launched itself as SPECTRUM Centre for Independent Living.


This was obviously a momentous day for all the staff members and allies of SCIL. For the past 28 years, SCIL has provided high quality services to Disabled People and their allies. We hope that with this modern new branding, we will be able to attract even more Disabled People to our cause and help to promote the concept of Independent Living to the wider community.

It has been a long journey to decide on how to rebrand, however, we feel that the SPECTRUM logo reflects the diversity of our members and our aspirations for a bright new colourful future.

At an exciting ceremony at Winchester, Ian Loynes, SPECTRUM’s Chief Executive, formally announced the change at just before 11am on the 30th of January 2013.

Ian greeted the audience with a dynamic and wide-ranging presentation on the history of Disabled People through the years, as well as how SCIL has developed over the 28 years that it has been in existence. Ian emphasised that this was not the end of SCIL, it was just the beginning of a brand-new era of modernising the way that people think about Disabled People.

Over the next few months, SPECTRUM Centre for Independent Living will be sharing a lot more of their exciting plans as to how they hope to go forward over the coming years.

The Hampshire ULO Project has already begun work at developing more user-led organisations across Hampshire.  This work will lead to even more Disabled People getting involved in campaigning for equality and human rights.

At the National level, Disabled People are going through a difficult time of change so we feel that the time is right for user-led organisations to unite together to ensure that all people are treated equally and their human-rights are protected.

We hope you will join us in the bright new future that we have planned for SPECTRUM and raise a toast to our success.

Another Unwelcome Xmas Present from The Government

SCIL is bitterly disappointed that the government has announced its intention to close the Independent Living Fund (ILF) in April 2015. The government plans to transfer ILF funding to local authorities.

SCIL as well as many other User Lead Organisations, have campaigned over the past two years for the ILF to continue. The ILF provides vital funding to many Disabled People with high support needs to enable them to live independently. SCIL is concerned that by transferring the funding directly to local authorities, it will put an impossible burden on a care and support system that is already struggling and in need of major reform.

Disabled People have raised many significant concerns with the government but to no avail. Despite the government proclaiming that the transition will run smoothly, many Disabled People will now face two more years of anxiety and stress while they wait to understand the full repercussions of this short-sited decision. SCIL will attempt to ensure that ILF users in Southampton are kept fully informed during the transition process.

Robert Droy, SCIL Independent Living Team Leader sits on the ILF user advisory group and will continue to fight for ILF users’ right to live independently, despite the changes. You can read the government response to the ILF conversation here.

Disabled Turkeys Voting For Christmas

This post is written by Gerry Zarb, SCIL’s Policy and Information Officer.

Do turkeys vote for Christmas? Even if we made our polling stations more poultry friendly I doubt that they would. I have always suspected this to be an urban (or should that be rural) myth. Amazingly though there are disabled people who’d vote for cuts to disability benefits and even for cuts to social care. In his blog for Community Care On-line Simon Stevens Blog, ‘Anti-cuts groups risk undermining social model of disability’ – Adult Care Blog  claims that cuts are not only acceptable and necessary but that it is in fact disabled people’s ‘responsibility’ to accept them.

To be clear, this claim goes much further than simply saying we need to accept (however reluctantly) that we don’t have enough money in the kitty to maintain to maintain previous levels of public spending. Rather, Stevens is claiming that the social model of disability itself demands acceptance of cuts as quid pro quo for greater rights granted to disabled people and the responsibilities that came with them: “The government is now asking disabled people to honour this as greater accessibility and inclusion means there is a lesser need for compensation payments like DLA or its prospective replacement, personal independence payment, for some disabled people.”

But wait, he doesn’t even stop there because, according to Simon, by baulking at the idea of giving up benefits and support that they need, disabled people are reverting back “to a medical model concept of disability, where people with impairments are victims who are portrayed as unemployable and naturally inferior”.

This really is a novel idea and I suppose he scores points for ‘imaginative thinking’ at least. But, frankly, it is nonsense – and dangerous nonsense at that!

Simon Steven’s argument is that the welfare state was originally developed on the premise that there would always be a proportion of the population who were unable to make any active contribution to society, but that society has now changed to the point “where everyone can make some sort of meaningful contribution”.

Similarly, in the case of social care budgets, he argues that “financial cuts do not necessarily mean reductions in outcomes” because there are ‘technological’ solutions to meeting people’s support needs that didn’t exist in the past. He asks, for example: “Should someone have a shopping call when they are able to do online shopping?”

Even the briefest examination of the unemployment data – especially for disabled people aged over 50 – shows just how wide of the mark this is. According to the latest official statistics from the Labour Force Survey, the number of unemployed disabled people went up between September 2010 and September 2012, from 392,000 to 434,000. That is an increase of nearly 15 per cent. Yes, that’s going to make it a while lot easier to find a job isn’t it?!

And, telecare in place of shopping visits? Are there even any councils left that still class shopping as an eligible need? If there are, you could probably count them on the fingers of one hand.

As the latest ‘State of Health Care and Adult Social Care’ report from the Care Quality Commission confirms, local authorities are tightening their eligibility criteria, meaning that less people get any support even though they still need it. “For 2012/13, 83% of councils have set their threshold for eligibility for state-funded care at ‘substantial’. This compares with 78% in 2011/12 and 70% in 2008/09”.

So, no, the real disservice to the social model is to suggest that disabled people are somehow inflicting dependency on themselves. No one is arguing that we have a problem with public finances. But the negative impact this has on disabled people surely makes it more important than ever to try to defend our rights to participation and inclusion. People who are left poor through having no income, or isolated through having no support, are being excluded, pure and simple.

How To Be A Good Boss – Training for Personal Assistant Employers

Over the last few years, thousands of Disabled People have used their Direct Payments / Personal Budgets to employ their own Personal Assistants. This has given them choice and control over how they receive the support they require, and by whom.

However with that choice and control has also come responsibilities. Most Disabled People we come into contact with want to be good employers. They want to treat their staff fairly, they want to keep good employment records and they want to act legally but in this ever changing world of employment rights and legislation, it is often hard to keep up to date with best practice in this area.

Well now SCIL may have the answer. We have been given some funding from Skills for Care to run a series of employment training sessions aimed specifically at Personal Assistants’ employers. Topics that we will covering include:

  • How to safely recruit Personal Assistants?

  • How to manage staff on a day to day basis?

  • What to do if there are performance issues with staff?

  • How can I get further support to be a good employer?

These sessions will be lively, fun and everyone who attends will receive a FREE handbook full of advice and tips to help them be a good boss. It will also give you a chance to meet other Disabled People who employ Personal Assistants too.

These sessions are free of charge however we will be asking  participants if they would be willing to provide some anonymous information about the Personal Assistants they employ. This will help Skills for Care in developing opportunities for people who work in social care in the future. We will be letting participants know more about what information Skills for Care need and how the information will be used during the sessions.

This is a really exciting project and we hope lots of Disabled People will want to get involved. If you want to know more about the project, get in touch with Jeremy at SCIL on 023 8033 0982 or email