Summary of ‘Disability Manifesto’ now available

http://spectrumcil.co.uk/wp-content/uploads/2017/06/PDF-GE2017-SUMMARY-VERSION-SPECTRUM-Newsletter-Special-Manifesto-Edition-May-2017.pdf

With the General Election just a week away, many people are still deciding on who they are going to vote for. The election campaign has been dominated by issues such as social care and welfare reform, although sadly the horrific terrorist attack in Manchester has focused everyone’s minds on the issue of safety and security.

Our ‘Disability Manifesto’ which sets out what Disabled People would like political parties to commit to doing in the next Parliament, has been a great success. We are aware that it is a fairly long document so we have summarised the key commitments for each topic area into a short document so people can see at a glance what Disabled People want the political parties to sign up to.

We hope this summary document will be easier for some people to access. We will also be tweeting out the key commitments between now and the big day as well as releasing a video with some very special guests discussing our manifesto so keep an eye on our blog and Facebook page over the next few days.

If you want to read the full manifesto, please visit our Disability Manifesto page

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SPECTRUM 2017 Disability Manifesto out now!

There are more than 13.3 million Disabled People and people with long-term health conditions in the UK – a very sizeable part of the electorate in 2017.

We believe it is essential for Disabled People’s voices to be heard in the debates around the 2017 General Election – not only because they represent a large number of votes but, more importantly, because they are deeply affected by so many of the key issues at the heart of political debate.

On the 25th May 2017, SPECTRUM Centre for Independent Living will be launching our Disabled People’s DISABILITY MANIFESTO – a pragmatic and realistic range of proposals which shows how the Government, any Government, could address the unfairness, the indignities and the discrimination that Disabled People have faced because of austerity measures.manifestocover2017

 

The launch of the DISABILITY Manifesto will be the start of our campaign to bring the needs, and the solutions that Disabled People are proposing, to the eyes and minds of the electorate, and into the minds of politicians and policy makers.

Disability Rights at Stake in the EU Referendum

130John Evans OBE has fought tirelessly for over 30 years, for the rights of  Disabled People across the UK and Europe.

In this exclusive video interview with SPECTRUM, he explains why remaining in Europe is so important for Disabled People. He argues the EU has protected the rights of Disabled People and has pushed for more action to be taken on improving access. Not just physical access but also accessibility on the Internet which is increasingly important. John has already written extensively on this subject and we recommend you read our earlier blog post where John outlined the case for voting to remain in the EU.

 

 

As John points out, this is a decision that will not just affect us, we need to think about the young Disabled People who come after us. Do we want to risk the rights that we have fought so hard for over thirty years,to be chipped away at, or repealed all together?

John will be voting to Remain in the EU on Thursday. We hope YOU will too!

 

Can Robots be Caregivers? Let’s have a heated debate…

This week, Ian Loynes, SPECTRUM’s Chief Executive, spoke at a debate held at Winchester Science Centre. Below, you can read his presentation which focused on some of the ethical issues that arise from this subject. We would love to hear your views either by commenting on the blog itself or by tweeting us at @SPECTRUMCIL 

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Can Robots be Care Givers?
SPECTRUM’s general stance:

Whilst we welcome any technology that enables user choice and control and Independent Living, we are concerned that any move to robotic provision of care is likely to be driven by a cost saving agenda, rather than for quality of care or user preference.

Disabled People are concerned that ethical and human rights aspects of this debate are not receiving enough consideration and that care recipients (users) of this brave new world are likely to be largely excluded from the discussion

I’d like to focus on following issues, from perspective of Disabled People:

Pros:

  • Robots don’t go sick, don’t need holiday cover and don’t cause HR problems – or could they!
  • Intimate personal care can be embarrassing and undignified – Robots to support toilet needs for example
  • Robots could reduces certain risks – safeguarding, abuse, theft, language barriers
  • Real opportunities to empower and enable to individual to compensate for some impairment barriers (communication aids, memory aids, visual aids, for me – exoskeletons!)
  • It will happen (and already has – iPad, Labour saving aids, communication aids)

Cons:

  • May well be Imposed on people – often the most vulnerable with least voice
  • The care giver will often be the only human the user sees – social isolation is already the most common ‘unmet need’ – robots could make this worse. This would not be good for people who are already socially isolated or people whose conditions actively benefit from interactions with others; ie Alzheimers.
  • What is the Motive?: Likely to be seen as a “cheaper option” by local authorities looking to save money?

Ethical considerations:

In our experience (i.e. telecare debate) ethical and human rights issues often receive scant attention.

For instance:

Who is responsible if the robot or software goes wrong or breaks or causes damage/death? – these events will happen.

Who is in control? The care recipient, the local authority or the manufacturer?

The main challenge in creating robotic care givers is the problem of programming a machine with a reliable set of ethics.

A robot will have to make complicated decisions regarding its users on a daily basis (particularly for nursing care). Since its function will involve giving advice that will determine the health/welfare of human beings, it will need to have an ethical system that will allow it to properly carry out functions while treating users with respect.

For example, if a robot is programmed to remind its users to take their medicine, it needs to know what to do if the user refuses. On one hand, refusing the medicine will harm the user. On the other hand, the user may be refusing for a number of legitimate reasons that the robot may not be aware of. For instance, if the user feels ill after taking the medicine, then insisting on administering the medicine may turn out to be harmful.

These scenarios are everyday situations that humans navigate with ease. The human brain can assess a situation not only based on data that it directly receives through its senses, but it can also logically process other signs, such as the look of a person or the intonation of a response. If there is not enough data to make a decision, a human can figure out which questions to ask in order to receive more information.

A key point for me is that many of the remote technologies in use or development today rely on being able to track people’s movement and behaviours and, in practice, that can – and does – very easily lead to some serious breaches to people’s rights to a private life as well as putting dignity and autonomy at serious risk. We are alarmed at how little attention providers seem to pay to these issues – in fact I’d go as far as to say in telecare they were mostly oblivious to the risks.

The Health Select Committee also raises concerns about this issue. They emphasised that while technology can facilitate things like robotics and telecare, this has to be balanced against people’s right to privacy. They recommended that privacy and confidentiality policies and protocols should be developed, implemented and audited when new technologies are introduced.

They said that: It is essential that a balance between the use of technology and the continuation of human contact is an important element in any such judgement. Furthermore, evaluation needs to take account of the qualitative benefits for users and carers over time.

I don’t want to rain on robotic’s parade – I really don’t. Anything that can play a positive role should be welcomed.

But, we do have to be realistic about what it can achieve and, more important still, we need to recognise that there are no quick fixes to the challenge of building a social care system capable of addressing the needs of an ageing population.

Rather, we need a serious debate about the value we place on social care and the willingness – on the part of both government and the public – to invest in social care as a positive public policy resource.

And we must do this in an environment where we know that the reality of social care at the moment is that, if anything, overall provision is in decline and local authorities are deserting families who require their support


So, you’ve read what SPECTRUM thinks, now it’s your turn. Let us know what you think. Comment below or tweet us at @SPECTRUMCIL  

Personal Assistants Require Support and Recognition – But They’re Not Heroes or Saints

This blog post was written by Robert Droy and is his personal point of view

I get used to reading articles that are patronising to Disabled People. Unfortunately it’s just a price we have to pay if we want to read a newspaper or surf the internet. However an article in today’s Guardian was different in that I found it rather patronising about personal assistants or as the Guardian calls them ‘care workers’ .

Let me be clear this is in no way meant to be a personal attack on the author. Many of the points the author made regarding staff receiving adequate wages and the commitment that many staff put into their work, I wholly agree with. However phrases like ‘noble’ and ‘incredible’ and ‘devoted her whole life to….’ were quite jarring to me. It sounds like the member of staff was very good at her job and was committed, but she was just a member of staff. She wasn’t a hero or a saint. She shouldn’t have devoted her life to the job. My Personal Assistants are great at their job but they haven’t devoted their life to supporting me and neither should they. They should however have their work recognised and rewarded appropriately.

This brings me on to another quote from the article – ‘Caring is often a thankless task’ . Well, so is mending the photocopier, so is emptying other people’s bins, so is dealing with a drunk person after closing time. Many of us have jobs that are thankless but should we expect gratitude just for doing our job? I feel this is where the author got confused between caring and care work. People who are paid to support Disabled People (personal assistants / ‘care workers’ ) are distinct from carers who are normally friends or family who are providing unpaid care to the Disabled Person. Both these groups are vital in the modern social care system but they have different needs and support to undertake their responsibilities.

And after all this, we must never forget the wishes and preferences of the Disabled Person. How do they feel if their staff are held up as heroes and saints? Many Disabled People, including myself, may feel the staff are lucky to have a job at all. And that’s not because we’re ungrateful or don’t feel hard working staff should be recognised. It’s because we hear from our staff, how they enjoy their job, how they do feel recognised, or at the very least, how it’s better than working in McDonald’s.

SPECTRUM is here

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

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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.