Simon Duffy

Thoughts, Bemusements & Arguments

Tag: learning disability

Living in the Ghetto

I was recently invited to speak to a room of commissioners for services for people with learning disabilities in England. This is a pretty rare event for me these days and so I was keen to make the most of the opportunity.

I called my talk ‘Who Put Out the Fire?’ and I wanted to talk about why there no longer seems to be any significant passion or momentum for inclusion or for further deinstitutionalisation. I do not mean that nobody is doing good work. As ever, there are brilliant people doing wonderful things across our communities. But overall the passion that used to exist to bring about positive change has evaporated. In fact, in some places, we see things going into reverse.

We are at a moment of change.

Progress is not inevitable and we should not be naÏve. Things are beginning to roll backwards and, unless we change our behaviour, things will get much worse. Eugenics is already back on the agenda, in the form of genetic screening for Down Syndrome, ongoing practice in neonatal care and abortion laws that abandon limits in the case of disability. These practices go hand-in-hand with the meritocratic beliefs of our elites – people who think that the ‘clever’ (themselves, by their own definition) deserve the ‘best’. Putting powerful technology in the hands of people who think that they are better than other people never ends well.

And the institution is back. Not only are thousands still incarcerated in private hospitals (at great expense) but also authorities are now being tempted by that old dreadful excuse for bad practice: economies of scale.

Some of this can be explained by austerity. Politicians and managers have always been tempted by the idea that ‘congregate care’ must be cheaper and that they have a public duty to manage costs and be ‘reasonable’. This is understandable when local authority funding has already been cut by 30-40% and is being further cut today. Local commissioners are only following the lead of national politicians when they shift the burden of the banking failure onto disabled people and families.

However, more controversially, I think that some of the responsibility for today’s failure of leadership lies with Valuing People. I do not mean that the Valuing People policy or its leaders were bad – quite the opposite – but I do think the whole process has led us up a creek and today everybody seems to have forgotten how to paddle. Genuine, community-based leadership, is missing in action.

In the 1960s and 1970s many leaders emerged, inspired by Wolf Wolfensberger’s ideas, shocked at the state of our institutions or simply keen to ensure their sons and daughters were able to get a better deal. These leaders challenged the norm and created new alternatives. Many of the organisations (like Mencap) which we take for granted today earned their leadership status through this process of challenge and creation. Later on other organisations, like the Campaign for Mental Handicap (which became Values Into Action) took on the role of challenging Government and of advocating for human rights and inclusion.

But Valuing People encouraged people to put their faith in two dangerous myths. First, that Government did care, and would continue to care, about the fate of people with learning difficulties. It didn’t, it doesn’t and it won’t. Second, positive change comes from Government and from the leaders it selects.

By this I don’t mean that Government is bad or hostile to the interests of people with learning difficulties. It isn’t. But Government is always late to the party. The job of a civil servant is to keep everybody happy, not to lead radical change. The job of a politician is to respond to democratic pressure, not to stand up for powerless minorities. Entrusting leadership to politicians and civil servants is to abandon leadership.

It seems to me that Valuing People killed the real drive to inclusion; just as Putting People First killed the drive to self-directed support. Killed with kindness, killed with money, killed by assuming an intellectual authority it could never possibly live up to.

This seems counter-intuitive. Too many good things, too much useful funding and too many opportunities are associated with Valuing People to believe that it was bad for us.

But look at England today.

Where is the self-advocacy movement? In tatters. Today the Government is about to take away the last piece of funding for the National Forum and for the National Valuing Families Forum. If this goes then can we look back on over 30 years of self-advocacy development and congratulate ourselves on our achievements? No. Self-advocacy is patchy, under-funded and lacks any agreed form of leadership.

What about service development and innovation? For some reason we now expect government and commissioners to lead innovation; but our systems of commissioning have effectively killed off innovation and creativity. Some people and families have escaped the system, using direct payments; but most of the money remains invested in the care home system (which is now protected from the impact of personal budgets).

Today the whole sector seems incapable of defending itself or of uniting with others to fight for justice. For example, there is no effective campaign to defend social care. Many of the leading organisations seem too dependent on Government funding and unwilling to speak out or get organised.

If you look upwards for rationality and for inspired leadership you’ll be a long time waiting.
The positive changes that began in the 1970s were led by people and professionals, starting from where they were then. Focused on what they could do with the resources they had to hand. They did not expect everything to be done for them. They got organising, supporting and campaigning. That’s how things really change.

Perhaps one thing that they also had back then was a strong sense that the current system was unacceptable. They looked at the institution – those systems of absolute exclusion – and they declared that it was absolutely wrong – and they then worked hard to build an alternative.

In practice that alternative is the world er have now: group homes, day centres, respite services and care services. This is a significant improvement over the old system. This is the system that is today’s ‘normal’. This is the system we are struggling to improve and which is now beginning to slip backwards into something worse.

Why can’t we do better than this?

What can’t we dream bigger than this?

People with learning difficulties are agents of social change. They can bring communities together, they can break down the barriers of pride and illusion that leave us dislocated and alone. They can offer the rest of us a different sense of the purpose of life and insight into the joy of living.

People with learning difficulties are just different. But we are all different… get over it.

Diversity is a good thing and to be welcomed. True equality is not found in sameness, conformity or compliance. Equality means treating each person as if they belong, as if their gifts have meaning and value. Equality demands we treat each other as citizens – working together to create communities that welcome and nurture our gifts.

If you believe this then this belief has real life consequences.

One of these consequences is that we must start to acknowledge that the community care system, that was developed during the period of deinstitutionalisation, is totally inadequate. It is a system of ghettos, small segregated communities, cut off from community life and communicating to people on both sides of its walls that people with learning difficulties don’t really belong in our communities.

Ghettos are not evil. Community care ghettos are not the same as the long-stay institutions that they replaced. Ghettos can even be fun and interesting. Ghettos can even convert themselves into places of community and inclusion. (It would be a mistake to confuse ghettos with institutions and it would be a mistake to ‘close’ ghettos using the same kind of process that were used to close the institutions.)

The architects of new and inclusive communities will be people themselves. But they will need help from families; and they will need help from the professionals who want to be true partners. And they will need help from fellow citizens who want to live in the kind of community that can welcome each of its members.

Is this progress inevitable?

No. Today it’s being undermined by powerful social, economic and political forces that are being left unchallenged.

Is this progress a pipe dream?

No. It is happening now, in small pockets. There are people and places that are showing us the way forward. Rising to this challenge takes work, it takes time and it takes creativity. But it’s worth it.

What I am trying to do is reframe the challenge that lies before us. We must stop treating the current community care system as if it provides an acceptable norm. It does not. We have to be honest about the limitations of what we’ve achieved. There will be no increased hope, passion and wider social movement unless there is both a compelling vision for inclusion and a growing sense that the ghettos we’ve created are unacceptable.

Czars, Commissioners or Just Us?

For readers outside the UK I must do some scene-setting. In 2011 the television documentary programme Panorama did an exposé on the crimes committed against people with learning disabilities at Winterbourne View, a private hospital in South Gloucestershire. This was the first time in a long while that people with learning disabilities had come the attention of the UK’s mainstream media.

In fact my own emotional response to the crimes at Winterbourne View may seem peculiar. I wasn’t shocked by the abuse scandal. I was glad that this long-running scandal had finally been revealed. Places like Winterbourne View have been around since the early 1990s and this kind of abuse is typical of what happens in those kinds of systems. In fact, when carrying out some research in South West England, I met several families whose children had been at Winterbourne View and they said that it was the ‘least bad place’ that their children had been forced to live.

I am sure that most professionals working in the system know that these things have been happening and have been happening for a long time. Certainly my own work has been inspired by a strong desire to get rid of such institutions and to ensure people are treated as citizens instead.

The physical and mental torture imposed on people at Winterbourne View isn’t even the worst of the crimes committed against people with learning disabilities. Far too many people die, either because of abuse, poor healthcare, over-medication or negligence. The fact that there are now some powerful advocacy groups putting pressure on the Government over these issues is one of the few bright spots in an otherwise bleak scene. The UK Government is getting away with cuts in support, cuts in housing, cuts in income and cuts in employment for people with learning disabilities. But at least it is not quite getting away with funding services where we know people are likely to be tortured and where they may even die.

The irony is that, of all the political problems faced by people with learning disabilities today, this is about the only one that has not caused been by our current extreme right-wing Government.*

These attacks on the lives of people with learning disabilities typify institutional service provision. Long-stay institutions, with their regimes of power and control, encourage criminal and immoral behaviour. Treat people as if they do not belong, treat people as if they are not worthy, are not fully human, then this will be the almost inevitable result. [Not quite inevitable, for nobody is ‘forced’ to act badly; but put people in the wrong environment and the temptations to act badly will grow quickly.]

I have written about this at length in my book The Unmaking of Man.

The first large scale institution to close in England was Darenth Park Hospital in 1988. The last to close, Orchard Hill, was closed in 2010. The Centre has published a number of reports describing these places and the experiences of people and staff.

In international terms England closed its institutions early. However there were many problems that we did not manage to resolve during this process and much of the early momentum towards inclusion ended once the hospitals were closed. Today’s scandals reflect important limits to this early progress:

  • Limited public understanding – Hospital closures were inspired by family advocacy, but largely led by professionals (who were often inspired by Wolf Wolfensberger’s theory of ‘normalisation’). As the process of closure began it also became largely a professional matter – campaigning diminished and the public started to think of deinstitutionalisation as some kind of weird Thatcherite plot. Public understanding of, and commitment to, genuine inclusion has remained weak.
  • Institutional community services – The typical model for post-institutional care has been group home plus day centre. Most people leaving institutions were simply forced into this new (milder) institutional environment. We made the classic mistake of thinking that the institution was the building and we failed to see that we were rebuilding institutions within our communities. Many organisations that had once campaigned and advocated for people’s rights became major service providers.
  • New extreme institutions – Unsurprisingly some people from the old institutions could not ‘fit’ inside the new community institutions. So a profitable business developed as entrepreneurs (often ex-nurses) set up private care homes and hospitals to house those whom this early form deinstitutionalisation had failed. This process had begun by the early 1990s, and these business picked up new ‘clients’ whenever local community services failed to provide the right support. The NHS set also up what it called Assessment and Treatment Units (ATUs) to try and limit this problem, but often these services simply replicated the same problem.
  • Crisis-driven eligibility – While many private and charitable businesses boomed during the period of ‘community care’ there was an on-going failure to address the fundamental issues of rights, power and control that shape the future. Families still face the same fundamentally unfair choice with which they were confronted during the institutional era: either ‘carry on taking care of your child by yourself’ or ‘hand over your child to us’. That is, we have continued to offer families responsibility, with minimal support or to have provided services over which families have had little control.

It is these combined factors that have led to the creation of places like Winterbourne View. When carrying out the research described in Returning Home and Getting There a clear pattern emerged to describe how people ended up in abusive environments costing an average of £175,000 per year:

  1. A family struggles with minimal support and then something happens which brings them to a point of crisis.
  2. At the point of crisis their son or daughter is offered a place in some kind of ‘community institution’ (usually a group home).
  3. The young person hates it; they feel a mixture of anger, sadness or fear and they start doing things to hurt themselves or hurt others.
  4. The young person is deemed to have ‘challenging behaviour’ and is then moved to a more ‘managed environment’ further away from home.
  5. The young person hates that too and so a cycle begins which leads to increasingly professionalised, expensive and institutional services.

So we end up where we are in England today. Not only do we have 3,500 people forced to live in private hospitals and ATUs, we also have about 8,000 people living ‘out of area’ and many thousands more in prison.

And none of this is necessary.

I know this is not necessary, not from theory, but from practical experience. In 1996 I set up a new type of service provider, Inclusion Glasgow. This organisation ended up working with some of the most challenging people leaving the institutions in Scotland. Together with my friends and colleagues we developed a very different kind of deinstitutionalisation process where we provided personalised support:

  • Individual service design – Everybody is treated as a citizen with the right to a home of their own, living with people they choose and living a life that makes sense to them.
  • Empowerment – Power and control is shared with the person and their family to make sure that decisions are made quickly, appropriately and as close to the person as possible.
  • Personal assistance – People get support from the right person for them – recruited by them, employed for them – but with support and employment coming from the organisation.
  • Individualised policies – Rules and ways of working are designed with and around the person to keep them and everyone else safe.
  • Individual Service Fund – People have a personal budget which is protected and can be used to support flexible and creative service design.

Basically our approach was – treat everyone like a unique individual and support people to be full citizens with all the rights of citizenship. This is an approach that works. We went on to help establish two more organisations to carry out this work: Partners for Inclusion and C-Change for Inclusion. We also worked with a network of other smaller and inclusion-focused organisations in Scotland.

But while this process worked it did not really spread very far.

Personally my work from 2000 onwards focused on taking some of the lessons from Inclusion Glasgow into the development of systems of self-directed support. I wanted to help social workers work in the same way that we had – to empower citizens and families and to design support that was flexible and community-focused. First I took the model I’d developed to North Lanarkshire and then I took it to In Control in 2003.

Perhaps negligently, I trusted that the Inclusion Glasgow approach would flourish naturally in the new world of self-directed support. I was clearly wrong.

Reflecting on all of this now some things strike me as worth more attention.

Change requires not just better systems, but real leadership. There has been no significant ‘market’ pressure for real innovation by services. Organisations have been allowed to continue with old forms of practice because commissioners know no better and families have not been encouraged to demand better from service providers. Instead families have simply been encouraged to take over all responsibility – becoming employers, accountants, brokers and innovators – all for free.

The early successes of self-directed support all relied upon the willingness of some families to take this difficult path. It is testament to the power of love and family that so many have succeeded. But why should this be necessary? Why cannot services learn to work with families as true partners?

The other thing that strikes me is our peculiar image of leadership.

From 2001 we had a Learning Disability Czar. Does anyone else not think that this is the strangest choice of language? Why would we think this a useful image of leadership – to be the head of the failed Russian Empire? For me the idea of Czar suggests a range of problems:

  • An enormous faith and power invested in one – democratically unaccountable – individual.
  • The corrupting role of patronage – funding being directed wherever the Czar feels it should be best spent.
  • A culture of submissiveness, solicitation and supplication that inevitably arises around any charmed central figure.

I cannot see why anyone would think this would help. Instead I think the creation of the Czar during the New Labour era helped to put us all to sleep. We learned that obedience and compliance would be rewarded with extra funding. We stopped seeking fundamental legal change, instead we expected wisdom to come down from Central Government. But what in our experience might lead people with learning disabilities and their allies to believe that Government is the font of all wisdom?

In a recent report emerging from the Winterbourne View crisis it is suggested that the answer to our problems might be to appoint a Learning Disability Commissioner. I don’t know about you but the word ‘Commissioner’ always reminds me of Commissioner Gordon in Batman. May be this is preferable to a Czar; but as we already have an enormous ‘care policeman’ in the form of CQC I don’t quite understand how another policeman will help us. Perhaps we do need Batman – but unfortunately I am not sure he is going to swing to our assistance. However a commissioner is certainly more in tune with the austerity era – no money, but perhaps some additional power to bully people.

As with all efforts to centralise power and control, the fundamental flaw in these dreams of Czars, Commissioners or any other such ‘magical leadership’ figures is the notion that transferring power and control away from people, families or communities and towards the new king-pin figure, will improve things. We naively assume that just by creating this king-pin role then it will inevitably be filled by the ideal figure of our dreams. But in reality these characters often make things worse.

In our efforts to improve things for real we must accept that there will be no Batman, no Commissioner and no Czar to solve our problems. Perhaps we need to take responsibility ourselves – in whatever role we find ourselves.

In particular service providers, social workers, advocates and charities need to think about how they can take responsibility for offering people and families much better support. Nothing stops us from offering people personalised support – the power to change things is in our hands. We know – at least many of us do – how to do this better. It’s time to get on with the job at hand.

For myself I’m thinking hard about how the lessons from Inclusion Glasgow and from other forms of personalised support could be shared more effectively in the future. I’m thinking about how families could be given a much better deal in future. I’m thinking about how we might develop the momentum to return to a focus on inclusion and citizenship – not failing services or institutional systems.

* I say ‘extreme’ not only because it’s true, but because our media seems to be branding the current Labour leader as an ‘extreme’ left winger. This seems very peculiar, as his policies seem rather moderate to me, so I use the term simply to try and balance out the impact of media slurs. I encourage any of you so minded to do likewise.

The Marriage on the Mountain – Independent Living and Person-Centred Support

This is my fourth and final blog – written in honour of the Social Care Ideas Factory’s (SCIF) event – We Chose to Climb. This event has been one of the most interesting and positive events that I have ever had the honour of being involved in: great people, great talks and great conversations.

The event was, I think, an effort to bring together many threads of thought and action – and to bring together many different groups. I cannot do justice to the full wonderful human complexity of it all in this short blog; but I did get a feeling that, at last, we might be on the cusp of achieving two important marriages – marriages that have at times seemed so unlikely and yet marriages that would be so natural.

The first potential marriage is between the ideal of independent living and the ideal of person-centred support. These are not quite the same things, and they certainly have rather different histories; but there is, at their heart, such a commonality of purpose, that a marriage could be possible.

Independent living is a philosophy of being and action that has been developed by people with disabilities (for audiences outside the UK) or disabled people (for the UK audience).

[The hazards of forming this previous sentence give some indication of how difficult it is to write about any of these matters in a way that won’t upset someone, but I think it’s important that we remember that these ideas do exist in a global context – particularly as people with disabilities have worked very hard at ensuring that independent living is linked closely to the UN Convention on the Rights of Persons with Disabilities (UNCRPD).]

People with disabilities have been advocating for independent living for about 50 years – this is not an insignificant period of time.

There are some subtle differences of definition that can occur. Independent living is certainly very closely aligned to the idea of rights. As such it is an assertion that we have socio-economic rights (an idea that the current UK Government seems to have abandoned, but which is fundamental to the UN Charter on Human Rights). But it is also an assertion that these rights have to be sensitive to the many forms of discrimination or disadvantage that occur for people with disabilities. Perhaps most importantly, it is a challenge to the welfare system, that was developed in the era of Human Rights, after World War II, that these rights must be designed in ways which respect individual choices about lifestyle, relationships and identity.

Practically, independent living was the philosophy used, by many people with disabilities, to insist that they should not have to suffer institutional living, just because the welfare state had now absorbed institutional ‘care’ services.

The philosophy of independent living is also closely, sometimes perhaps too closely, identified with all sorts of positive service developments: personal assistance, accessible buildings and transport, direct payments or individual funding. These developments have all been very good, but one danger is that we confuse the philosophy of independent living with a particular mode of living – say, living in your own accessible flat, using direct payments and employing personal assistants. Independent living, in its true sense, means living as you wish, in the way that makes most sense to you, to your relationships, to your community and to your values – it is certainly not a prescribed lifestyle.

The concept of person-centred support is not the same as independent living; its roots are more diverse, and it is rarely treated as an explicit political goal in the same way as independent living has been. The term has taken root in counselling, in support for people with intellectual disabilities and in the world of dementia. As this suggests, it is an approach that seems helpful for people who might be disadvantaged because they have difficulty expressing themselves, making choices or find the right lifestyle for themselves. In practice, whether it is through planning, therapy, conversation or action, it is an effort to respect the identity of a person who might otherwise be ignored and erased from proper consideration.

Now I must be careful here – when I say that these two concepts might marry I do NOT mean that these concepts are the same or that they might be merged into one concept. Anyone who thinks that has not been married or has not paid attention to what a marriage is. A marriage is (or should) be a respectful union of two equals. Marriage involves, negotiation, love, mutual support and joint effort – for a common good. What I mean by marriage is that these two ideas might be used to complement one another and to develop a better understanding of common problems and shared solutions.

However, it is quite natural for many people with disabilities to be suspicious of person-centred support; for it may appear to be yet another ‘trick’ of the professional establishment to prod, poke and interfere with their lives. Accepting person-centred support might appear to be a false and unnecessary admission of weakness: Don’t give me person-centredness, give me control!

Yet the greatest danger of completely rejecting person-centred support is that it can narrow the world of disability considerably. Given natural human diversity and all the inevitable frailty of the human condition – all of us need assistance and those most like to face the barriers of disability are those who need assistance with communication or decision-making, those who are locked in anger, fear or sadness and those who suffering from illness or chronic health conditions. If our idea of disability is dominated only by the image of the wheelchair then the world of disability has been radically reduced.

At the heart of person-centred support is the bold assertion that everyone has value, everyone’s life is meaningful, everyone has something to contribute. This assertion is part philosophy – an ethical commitment to the equal value of all human beings – and part methodology – start by assuming value and you will find it.

So, my claim is, independent living needs person-centred support  because, without it, there is a grave danger that too many people with disabilities will be exiled to a place where they are deemed too disabled to be disabled. This is not right and it not helpful.

I also think that we must be careful not to rely too heavily upon our rights. Rights exist because duties exist – and human history tells us that, far too often, societies can quickly become blind to their duties and responsibilities. An awareness of right and duties does not flourish unless we are also aware of ourselves as interdependent beings, with innate value, and with multiple capacities to contribute – including the contribution to community that we make when we need assistance.

But person-centred support also needs independent living. There is a grave danger that person-centred support – which does just lack the same authentic roots as independent living – will morph into another professionalised approach, and will lose its way. We’ve certainly seen signs of this in England, where the institutionalisation of “person centred plans” as the new “care plans” promised so much, but has delivered so little. Person-centred support can open up new possibilities and offers the means to nurture mutual respect; but it is no replacement for robust rights, collective political action and practical peer support.

So, we can use both ideas, they are not the same, but they each offer something valuable and distinct.

There is a second marriage that would be useful, and that is the marriage of people and professionals. Again I do not mean to abandon the obvious differences that might exist between many millions of people on either side of that line (and the very many who stand with one foot on either side of that line). Self-identification as a person with a disability or in whatever group is useful, remains an essential first step toward claiming our rights. However, there are several reasons why a marriage between such diverse groups, might be advantageous.

First, there is the obvious political issue; for there is currently no assurance that there will be any professional services, of funding for personal assistance or for personal budgets. In England ‘adult social care’ has been cut by 30% in just four years – there is little point debating the niceties of the organisation of ‘adult social care’ or ‘personalisation’ when the whole edifice is crumbling around us.

Second, there is the call from many – both people and professionals – to drop many of the professional barriers, bureaucratic systems and undue regulations that make it more difficult for everyone to lead the best lives they can. These intrusive and ineffective controls have grown progressively over the years as trust between the front-line, management and politicians has declined.

The welfare state has become bureaucratic welfare. This situation will only be reversed when people with disabilities, families and professionals – together – start to insist upon and demonstrate the value of low-bureaucracy solutions.

Third, there is the fact that the capacity to collaborate collectively, across the professional boundary, will unleash some of the greatest innovations, support and community change. I see this in all of the best social innovations today – they are all the combination of a little money, a few employees, and a great release of creative action – rooted in community action.

The challenges of these marriages – of ideas and of people – are tremendous. They mean overcoming decades of mutual suspicion and misunderstanding. It means being able to think about problems from multiple perspectives. It means including others who might seem ‘too different’ to be included. But the risk of not achieving such a marriage is even greater.

Today, at the end of the conference, SCIF launched their next collaborative project – the Sherpas Union. This project will attempt to build an international movement of all those endeavouring to improve lives, for themselves, and for others. Perhaps it could be one means to promote the courtship between these different groups and these different ideas. It’s too early to predict, but I for one will try to do all I can to help out, and I have already applied to join.

Why We’re Launching the LDA for England

We are only 8 months or so away from the General Election of the 7th May 2015 and nobody knows who will win that election. However, over the last four years our Government has taught us that people with learning disabilities cannot expect things to get better on their own:

  • Benefits are being cut and sanctions are hurting and shaming people
  • Public services have been cut – 25% fewer people now get social care
  • Cuts target people with severe disabilities 6 times more than most people
  • The bedroom tax and the end of the ILF is making independent living harder 
  • Basic human and legal rights are ignored as Legal Aid is slashed
  • Thousands live in the likes of Winterbourne View instead of their own homes

The cuts and attacks have happened – not because of over-spending on disabled people – but because of bad management by Government and by the financial system. Instead of solving our real problems Government has falsely blamed disabled people for problems they did not create.

I must admit that all of this surprised me. I have no connection to any political party and, as someone who has worked in the public and voluntary sector for 25 years, mostly with people with learning disabilities, I did not expect this level of social injustice. It seems I had too much faith in the decency of the political classes and I expected a much stronger reaction from the Church, charities, the media and the general public. I just never thought things could get this bad.

We seem to be sleep-walking into injustice – how can we wake up? What can WE do?

The novelist Dorothy L Sayers wrote: “A government must be either servant or master. If you do not chivvy it, it may chivvy you.”

In modern English I guess that might translate as:

If you don’t stand up for yourself – then expect to be bossed around.

So, with colleagues, friends and other allies, we have decided to launch Learning Disability Alliance England – LDA for short.

LDA will be hosted by the Campaign for a Fair Society in England.

Our initial development group includes, people from:

  • People First England
  • Bringing Us Together
  • Housing & Support Alliance
  • The Centre for Welfare Reform

Hopefully others will join us as we grow.

We’re still at a very early stage and there’s still lots of details to work out;  but I thought it might be useful to offer some initial thinking about what we are doing and why.

First of all we want to make sure that the voice of people with learning disabilities is as loud and as powerful as possible. That’s why we are going to encourage every individual and organisation we can to join the Learning Disability Alliance.

Second we want as many people and organisations to work together as possible. The opinions of people with learning disabilities are the most important. But others can help. Families are often the key to helping people have the best life possible – they provide love, passion and support – we must listen to families too. And the voices of professionals and workers also count – they mustn’t become too loud or too important – but they still have much to say that can help.

That’s why LDA England is going to give every organisation a vote – BUT we will make sure that people with learning disabilities CANNOT be out-voted.

Third we are going to work with others. I had really hoped that perhaps some bigger alliance might emerge – women, families, disabled people, asylum seekers, the poor – they are all under attack and in an ideal world they would all work together. But this isn’t happening – so we must begin where we can and then reach out to these other groups.

There are one million people with learning disabilities in the UK. Most have family and friends, many have support from paid workers or professionals – together that’s probably about 5 million voters – 10% of the electorate.

Let’s make those votes count. Let’s chivvy back.

So this is our initial plan:

  1. Invite as many organisations as possible to join LDA
  2. Describe what’s wrong and what needs to change – develop LDA’s manifesto
  3. Listen to discussion and debate about these ideas
  4. Vote on our policies – making sure people with learning disabilities can’t be out voted
  5. Publish our own ideas, telling other voters and the politicians
  6. Test each party’s manifesto before the election and decide which best support people with learning disabilities
  7. Encourage as many as people to get out and vote

It’s going to be hard work – but we can do it. We’ve got 8 months to make sure people with learning disabilities get their voice heard and can challenge growing injustice.

Why not join us?

At the moment:

You can like our Facebook Page: www.facebook.com/LDAEngland

You can follow us on Twitter: www.twitter.com/LDAEngland

UPDATE

You can now sign up online: www.learningdisabilityalliance.org

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