Independent living – the rights referendum?

By Pam Duncan

For decades, disabled people have been campaigning for the right to choose the who, what, where and when of their own lives.

I left home 14 years ago, I was 18.  My mum and dad were worried, proud, and nervous but most of all, they were hopeful, and so was I.  Going to university was something I had always wanted to do.  I was nervous about leaving home – as most would be – but I was more nervous because I had never used formal care and support before, my mum and dad always done it.  I needed, and still need, support to do everything.  Going to uni didn’t just mean making new friends and starting a new career, it meant I was going to rely on people who I had never met before to provide me with the support I needed to get out of bed, use the toilet, get dressed, cook, go to uni and dare I say it – get ready for a ‘light lemonade’ in the union!

I am not alone. There are countless other disabled people who, like me, need practical assistance and support to enjoy basic human rights.

Back then, it took a lot of work and convincing to finally get the support I needed to reflect the fact that I was an 18-year-old woman, who was about to embark on the biggest career move and lifestyle change of her life – and who needed support to do it.  In the end, a student, placed in my council, and I, wrote and costed my support plan.  A plan that would allow me to fully participate in society and lead an ordinary life.

We ‘personalised’ and coproduced it – and in the end, I was in control, from start to finish, from the when, what to the who.  I got my support in a way that thousands of people had chained themselves to railings for, it was self-directed.

Sadly, this was not the norm – it’s safe to say both the student social worker and I, at that time, were well ahead of our game.  To plan, cost and assess your own package of support was a distant dream, a campaign, a reality only in the twinkle of the eyes of the leaders, our fore-mothers and fathers of the disability movement.

Community care for me, as it is for many disabled people, is not and never has been, about simply wiping bum’s and cleaning faces, it’s about giving people the practical assistance they need, to lead an ordinary life, to be free to do what they want with it, to choose who they share it with and how they live it, to control their own destiny and to do this with dignity, to work, to learn, to play – in the same way that others take for granted.

Today, 14 years on, our struggle for rights to choose and control our support, on our terms, is recognised in the statutes.

Thanks to the relentless work of the disability movement in Scotland, and the genuine open door of the Scottish Government, our rights to self-direct our own support, to participate in society and to do this with dignity, are set out law.

From 1st April 2014 the Self Directed Support Act 2013 will ensure that disabled people (and others who use community care services) will have the right to choose how their support is delivered.  No longer will we be passive recipients of care, we will be active partners in our own destiny.

But we cannot be complacent.  Despite the sea change in how we get support, we are still waiting on the sea change that recognises the value of that support to society – not the cost.  Eligibility for it is so high it is literally provided on a life and limb basis, charges for it have soared by 12% – despite the fact that disabled people are being plunged further and further into poverty and many disabled people are still left in incontinence pads because there is not enough money to help them to the toilet.

Social care is essential for many disabled people to participate in society and lead an ordinary life. It is an essential infrastructure for equality and human rights – of the disabled people who use it, but also for the millions of women who end up providing unpaid support when there isn’t enough paid support around.

But times are tough and money is getting tighter.  We must therefore must re-configure our thinking and planning on social care, in a way that is consistent with the financial, legal and moral challenges we face as a society and that delivers the desired outcomes we all want; individually e.g. to get out and about and collectively e.g. a healthier/wealthier/fairer/stronger and safer Scotland.

Co-production can help with this.  It puts disabled people in the driving seat, alongside decision makers.  But no one denies that this is challenging.  Not everyone is as ‘mouthy’ as me(!), people don’t readily have the information they need to manoeuvre the system and they don’t always have the support they need to make such life changing decisions – some people don’t even choose their socks or when they go to the toilet.

And not all professionals are as empowered as my social worker was – she was new, she could write what she wanted and she wasn’t constrained by the ‘system’ that the other 3 before her were – but she was respected as a professional and so when she presented her coproduced professional judgement on my support needs, rights I like to call them, she got the green light.

To fully realise the potential of social care for society, we need the sort of Public Sector Reform that does just that – empowers the individual and the professional – who should be there on tap, not on top.

There are difficult choices and decisions ahead, to see the change in social care on the scale we want to see. We need commitment from the grassroots to the tree tops.  We must now enter into an open, honest and very public debate about a future for social care that is underpinned by a drive for equality and human rights, and an empowered social care sector supported by a fair system of finance that is sustainable and acceptable to all.

Change on this level, needs collective coproduction, where society, groups of people and their representatives, can come together, honestly and openly, and discuss what they value for the future and what they have to offer to get there.

I feel proud and privileged to have been part of winning our fight on the choice and control over our support… now we need to win the fight on the choice and control over our lives.

About the author

Pam Duncan is Policy Officer for a national disabled people’s organisation.  She has an MSc in Health Psychology, a BSc in Psychology and a Post Graduate Certificate in Citizenship and Human Rights.  Pam has been a disability activist for many years, is a keen trade unionist and a member of Scottish Labour’s Social Justice Sounding Board.  She is currently a member of Unison’s Disabled Workers Committee and was Disabled students Officer for NUS Scotland for 2 years.  Pam has also been a board member of a national charity.



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