Making the case for the right to independent living

Disabled activists are coming together for a summit on independent living this week.

It’s vital and urgent. It comes as expert Jenny Morris looks at progress against the 2008 Independent Living Strategy that was backed by all parties.  She told me that ‘for the first time in the history of modern British social policy that things are going backwards’.

I’ve written before that for many disabled people, me included, it’s a daily struggle to get the support we need to live in a way that most people take for granted. I need support from a personal assistant to simply get up, get dressed and get to work.

I am acutely aware how fortunate I am that the council covers most of my care costs. Getting that support was extremely difficult. And now I’ve got it there are endless caveats and restrictions. For instance, sometimes I have to choose between getting support to visit elderly relatives or to go shopping to buy essentials. The council provision doesn’t cover both. None of the support covers the work I do for Scope – that has to come out of our own funds.

Those limitations can be intensely frustrating. But for many disabled people the restrictions on living their life, as a result of the ever increasing rationing of care, are much greater.

We have to make the case for a better funded social care system, which provides support that contributes to, rather than takes away, independence. Neil Crowther is absolutely right to re-ignite a discussion about the future of support for disabled people.

But that job has suddenly got much harder. I’m really worried about what appears to be a growing level of cynicism about the very principle of independent living – our aspiration to choose where and with whom we live and how we go about our daily life.

Last week as part of a debate on care homes, Labour MP Gavin Shuker argued that “there will always be some people whose condition is severe enough to rule out other options of care”. He is backed by a growing group of politicians who feel strongly that some disabled people simply can’t live independently. Michael Ellis MP joined the debate challenging the notion that care homes needed to change.

Meanwhile doubts over the principle of independent living are spreading in the media too.

Alice Thomson, a writer for the Times, recently described the prospect of living independently rather than staying in a care home as “no picnics, trips to the theatre or hair dresser — just long, lonely, empty days”. Her argument is that there isn’t enough cash in the system for people to be supported to live independently – so, should disabled people therefore shrug their shoulders and march back into care homes?

Further undermining the case for people being able to choose where and with whom they live, influential campaigner Rosa Monckton recently said in the Mail: “Local authorities argue that it is ‘a human right’ for people to live independently in the community. However, I am convinced this is a financially convenient ideology”.

It all feels a far cry from the moment in the 70s when disabled care home resident Paul Hunt organised strikes, management takeovers, and effectively led an exodus of residents from a large care home he later described to the Guardian as an ‘isolated, unsuitable institution’. This kick-started the modern-day disabled people’s civil rights movement.

I think this new cynicism in part comes from confusion about what we mean by independent living. We don’t necessarily mean living on your own – unless, of course, you want to. We mean having the right to make basic decisions about your life, and having the structures and support in place to make this a reality. New types of care mean we can support people even with very complex needs to make important choices.

We have come a long, long way.  As the Care Minister Norman Lamb recently said care homes are no longer the default. Yes, we have to acknowledge that the approaches we’ve taken haven’t always worked for everyone. But that should drive us to find new solutions not to abandon the principle and goal altogether.

We have two huge tasks in front of us. We have to make the case for a sustainable care system. We also have to re-double our efforts to make the case for the basic principle that disabled people aspire to the same kind of ‘ordinary lives’ and opportunities as anyone else.

8 thoughts on “Making the case for the right to independent living”

  1. No-one is suggesting abandoning the choice for some disabled people to choose to live independently but equally, we should not be allowing significant providers like SCOPE to turn its’ back on society’s most vulnerable and leave them no choice but to move with enforced home closures that they do not want. As the MP Paul Burstow so eloquently said, ‘There will always need to be a spectrum of care services’. You do not paint a very attractive picture of supported living with needing to make a choice to visit family or go shopping! That to me doesn’t sound like independent living but having to curtail your rights to do as you wish when you wish, just the same as residential care will never be perfect but offers a lot more choice and freedom than that which you advocate, is the way forwards. Am I missing something, as fighting for something so poor, seems illogical and a complete no go for people who lack capacity to advocate for themselves? Vulnerable people who will be left at the whims of agency staff and poorly trained staff to interpret their non-verbal communication in a direction that will meet the need of the supported living unit rather than the individual. You represent the most able of disabled people, not the vulnerable group who campaigners at Parliament have recently represented. We have given over our lives to stop these people from being evicted from their communities, where they have long established friendships (some even relationships), have lots of choice about how to spend their days and have staff who in some cases have known them for 20+years and accord both the vulnerable person and their family’s, peace of mind, which is priceless. Be careful to be clear about who you represent, because you in no way represent the families of the 190 people who are facing eviction by SCOPE that I have had the pleasure to meet and represent at various levels. Norman Lamb will be held to account for having believed all that he has been fed by SCOPE and then the truth will out.

  2. I am currently one of many campaigners fighting Scope on their proposed closure of 8 residential care home. My severely physically and mental disabled sister lives a brilliant life in one of them.

    If I have learnt anything during my campaigning it is how intolerant people – including other disabled people – are. We live in a society where it is acceptable to be homosexual, bisexual or heterosexual. Where you can follow Christianity, Buddhist, Jewish or Islamic faiths. Where it doesn’t matter about the colour of your skin or where you were born.Where when we get older we will have a choice to either be cared for in our own home or go into a care home. And yet if a disabled person wants to live in a care home – they are apparently ‘backward’ thinking.

    I totally agree that the days when disabled people where forced into ‘institutions’ were unacceptable and ‘backward’. No one should ever be forced to live anywhere. But we are not in such times now. There are now lots of different living options for disabled people and I believe disabled people should be allowed to choose how and where they live – including in residential care homes. Why do some people find the thought of others being in these homes so terrible? Why can’t people just accept that that is their choice and get on with how they are choosing to live their life?

    This blog is called ‘Making the case for the right to independent living’. Well what about making the case for residential living? There is a massive support for independent living. All these homes for example are being closed in the name of independent living. Yet when people, such as the MP’s you mentioned, try and stand up for people who want residential care, they are criticised. Others, who cannot accept that it is that persons choice then try and give an explanation for their decision such as they are ‘institutionalised’ in order to make themselves feel better and believe that when these people are eventually forced out of their homes and into the community they will eventually be greatful. Why can’t we just accept that some people like living in homes?

    Does it have to be one or the other? We call the past care situation backwards because people had no choice and were forced into institutions. Well surely forcing them into independent living is just as bad? We are so intolerant of disabled people having a choice. What is right for one person is not necessarily right for another. Why can’t we keep all the different types of homes/supported and independent living accomodation and let disabled people truly have a choice?

  3. I think it is a good thing for people who can live independently, and want to do so, to have that choice. I think it is a bad thing to pretend that people who are not in that fortunate position, who require 24/7 care, could never hold down a job, make rational choices, or even communicate coherently, can somehow be squeezed into that first group.
    I can also understand why the more capable of the disabled who want to work and live independently, would be in denial about the realities of the second group, which are sort of of holding back their striving for equality.
    Alas, the sentence ‘New types of care means we can support even people with complex needs…’ may roll very easily off the tongue, but DOES NOT explain how that is to be done and what those new types
    of care actually are!
    Most of the second group live very happily in the now so ‘unfashionable’ residential care homes SCOPE proposes to close, and have done so for decades. SCOPE have done a sterling job in running them, they have been a Godsend to parents who have cared for their severely disabled children for as long as physically possible.
    We are such parents. Couldn’t cope with our now grown up daughter at home any longer. Reality is that there is a very broad spectrum of disabilities, and at the two poles the realities of life are about as far apart as one could imagine.
    Whatever your political ambitions, and however much you believe that second group doesn’t exist, bad news: they do, and they require appropriate care from SCOPE now more than ever!
    It would be a great feather in your cap SCOPE if you could recognize DIVERSITY WITHIN DISABILITY and provide appropriate care for each disabled individual.

  4. I have thought long and hard about my reply to this post. My brother lives in one of the residential care homes Scope propose to close, Hampton House. He is 49 and has been there 25 years. He is is profoundly disabled with multiple disabilities and poor communication skills. Nobody who is campaigning to stop or change these proposed closures believes disabled people should not lead independant lives. Of course we do! It is a disgrace that the finance is not available for every disabled person who wishes to live independently. However, the sad truth is that the profoundly disabled people at Scope’s residential homes would struggle massively in independant living – and the campaign, supported by Gavin Shuker and Michael Ellis MPs, Alice Thomson and Rosa Monckton, only concerns this relatively small group of disabled people. It is very wrong of Scope to try to discredit our campaign by suggesting otherwise.

    There are 2 main reasons why we are campaiging for Scope to reconsider their proposals to close so many of their residential homes. Firstly, a lot of the residents have been in these homes for many, many years. Like my brother, they are no longer young. They have made lasting friendships with the other residents and the staff – some of whom have been at these homes almost as long as the residents. To be told they may now have to leave their home has been terribly traumatic for these people who want to stay with their friends in their home. It will be worse if it actually happens. These residents are scared for their lives. How dare Scope threaten to take this away from people who have so little to start with? How would you like it?

    It is extremely hard to know how to make a severely disabled person’s live worth living. For Scope to take away the homes of a aging population of people with multiple disabilities and poor or no communication skills, homes where they have lived for decades, homes where they are safe, secure, happy and stimulated and have A LIFE WORTH LIVING – is a cruel, heartless and unthinking act.

    Secondly, WHERE ARE THEY GOING TO GO? Scope tell us that these homes will become unviable as local authorities no longer refer younger people to them. THIS IS A LIE. If this were the case there would be vacancies at other care homes for severely disabled people – which is the sort of accomodation the majority of residents at the present Scope homes would choose if they are forced to live away from their friends. The Leonard Cheshire Home near me recently had a vacancy which was being chased by 4 people. Another residential facilitiy for people with cerebral palsy told me that they get regular referrals from many local authorities and they could not understand why Scope would suggest this was not the case. They also had no vacancies. Scope have consistently refused to give any guarantees that the people they evict from their homes will go somewhere even as good as where they are now. For the relatives of these threatened residents, our fear is they will end up cared for by a succession of anonymous agency care staff in accomodation unadapted for wheelchairs, subjected to indifferent and impersonal care and leading bored, lonely, unhappy lives – and Scope refuse to guarantee that this will not be the case. 25 years ago, Notts County Council offered my brother a place in a old people’s home. I fear this may be where Scope’s closure will force him to go now.

    If Scope go ahead with these closures, these shameful and disgraceful acts of abrogation of their responsibility to the disabled people they are supposed to support, they will – against all their own strategies – be ignoring the actual choices and needs of the residents of their residential care homes. It is as if these residents are too disabled and have become too old to fit into their corporate ideal of a disabled person who can communicate effectively and go to work ‘with assistance’. If only my brother was that disabled person!

    Scope – you are not listening to us!


  5. What is this ‘new cynicism’ Alice is talking about? Does she mean us parents who only want the best for our children? She says she had to fight long and hard to get her needs met. I wish my two children had the ability to fight for their nerds and rights.
    Is it cynical to request that people with multiple disabilities and multiple needs stay in the home they know, with the friends they know, with the carers they know? What’s wrong with that? Why won’t she allow them to choose what they want, instead of what Scope wants?

  6. Alice Maynard, Chair of Scope, is a very intelligent, able and articulate person who happens to have some physical disabilities, who also founded Future Inclusion and is clearly a high achiever. Please may I suggest that Scope’s strategy currently could be construed as discriminatory against people who are not so gifted. No-one is suggesting for a moment that people with disabilities only belong in care homes (also the theme of a previous Scope campaign, c. 2010 I think) But many people with significant learning disabilities as well as cerebral palsy flourish in ‘made-for-them’ rather than ‘found-out-there’ community. Humans make social groups and care homes are another example of that human creativity. Disability can be a negative label which is why its often rejected by those with ‘only’ physical disabilities, or with mild cognitive impairments. For others with more complex needs, and their families, disability actually can create a cultural space which is friendly and enabling within its own terms, not negative at all. But someone who doesn’t share this experience (and most don’t) has to make a very great leap of understanding to recognise it. ‘Independent Living’ isn’t for everyone (& isn’t really independent anyhow?)

  7. Alice Maynard blog,

    So many words ,so little understanding

    Clearly she has misread Gavin Shukers speech, he said “I am fully supportive of the move towards more independent living for those who believe that they will be able to lead better lives in that way ” he went on to say that independent living is not possible or suitable for all.

    How can anyone distort that statement.

    Scope and its executives are confused

    Scope suggest they are allowing their residents to move out into the wider world, that’s nonsence ,the residents have been free to move out at any time in the last 25 years, and have not done so, we all know why.
    They like community living, this is what they enjoy.
    Scope seems unable to grasp that simple fact

    Scope are not allowing their residents to move out, they are evicting .them.

    After 12 years at Drummonds ,after 12 years of my L.A. paying for her care, I find that Claire has less rights as a tenant than most ordinary folk living in a rented property.

    Today Scope are ignoring all that the parents and family are saying and are pushing ahead with their eviction process (with of course caveats, we will support, we will listen etc. ) but we will evict. Because we Scope really do know what’s best. For my daughter.

    As late as 1976 Australian government officials were still forcibly removing aboriginal children from their parents, shipping them 100s of miles into new homes, on the basis that they the officials knew what was best for those children.

    That was an horrendous 100 year chapter in the history of the Australian government,. today most Australian people bitterly regret that they allowed that to happen.

    Drummonds, Hampton House, and other Scope homes are living breathing communities of happy mutually dependant people that need and care for ,and about each other. and wish to continue to share their sadly blighted lives with their friends and careers in what they see as their home.

    If Scope, Local Authorities, or Central Government allow these communities to die, if they force these residents who have been dealt such a cruel hand in life to be cast away for ever from all their friends and carers, from all they love.

    Then they will have committed a crime against humanity for which someday they will be held to account.

    Frank Lindsell

  8. Alice – you need to visit these care homes that you say are “old
    fashioned” – spend time with the residents and talk to them. You will
    soon realise how happy they are, how safe they feel and how terrified they are that it will be taken away from them. If these homes are closed, there will be some very unhappy, insecure people scattered around the country, and not given the choices that Scope say is their right, because there simply is no choice!!!
    Please do not assume that all disabled people want to live independently – most of the residents will never have the ability to “manage their own budgets”, let alone engage their choice of carer, shop for their food and prepare it – only to eat alone with only that carer for company.
    I think you need to start listening to the very people who know the residents best – their families. We have a right to say what we feel and talk to whom we wish – Scope do (and not always with complete honesty). We are the ones that will have to pick up the pieces if these homes close, not Scope, who will just walk away – job done and onto the next one!!!!
    What we are saying is – these homes are needed now, and will continue to be needed as long as there are severely disabled people in our society. There are very few vacancies in them and people are not leaving in their droves as you would want us to believe.
    Do the right thing and keep them open!!!!

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