Below is an extract from the new book All About Us! The story of people with a learning disability and Mencap. The book is compiled by Mencap president Brian Rix. The text below is by Mencap chief executive Jo Williams.
When Brian Rix asked me to contribute a chapter on everything Mencap wants to see change for people with a learning disability – and to do it in around 5,000 words – my immediate (private) reaction was mild panic.
To sum up, in such a short space, the situation today and what we want to happen is a tall order indeed. But this personal challenge is not unlike the one that Mencap faces: on the face of it very daunting, but not unachievable. And what is that challenge for Mencap?
It is to fight for a world where people with a learning disability, their families and carers get equal rights and chances in life, and where they get the support they need to participate in society as full citizens.
We do this in two ways. We campaign for change; that is, we say how things should be done, and we provide services in housing, education, employment and leisure and show by example how things should be done. In this chapter I want to concentrate on our campaigning agenda.
But first, I must pay tribute to Mencap’s indefatigable president, Lord Rix. Quite simply, if it wasn’t for him, Mencap wouldn’t be the powerful force for change that it is today.
I don’t need to say more about this here, because this book – impressively compiled by Brian – provides a comprehensive account of how Mencap, in sixty years, has grown from a fledgling parents’ support group to one of the UK’s largest and most influential charities.
Brian also asked me to say something about myself and how I came to Mencap. Here is the potted CV. I joined Mencap as Chief Executive in March 2003. Prior to that I had worked for more than thirty years in social services departments, for the last ten years as a Director (five years each at Wigan Metropolitan Borough Council and Cheshire County Council).
Rather than going into any more detail about my career history, I’d like to focus instead on two life experiences that helped shape my passionate belief that society must ensure the meaningful inclusion of all people with a learning disability.
So, the first experience: as a young, impressionable student at Keele University I visited one of the old ‘subnormality’ hospitals (I cringe now in recalling the terminology). The sheer inhumanity of the treatment of the ‘patients’ there left a strong mark on me. I remember distinctly thinking that no one, regardless of their disability, should be treated this way – as a lesser human being.
This belief endured throughout my career at social services, which brings me to my second formative experience. In the 1980s I managed disability services in south-east Cheshire. At the time, many of the large, long-stay hospitals described elsewhere in this book were being closed down, presenting us with the challenge of rehousing people with a wide range of support needs.
I saw this as a wonderful opportunity to try something radically new: supporting people with a learning disability to live at the heart of their communities rather than being shut off from the real world. So we bought up a variety of local properties, each to house a handful of people. We appointed community workers to set up and run these new-style ‘supported living’ schemes.
Crucially, we also recruited volunteers to spend time supporting people to get out and about and do normal everyday things in the community – like shopping or going to the cinema. The project was a huge success and was replicated elsewhere.
My most vivid memory from this time was when a group of people who could not speak showed their delight at their new-found independence by waving their house keys at me!
For me, this was confirmation of my belief that the more control we can give people with a learning disability over their own lives, the greater quality of life they experience. And this belief lies behind Mencap’s raison d’être: to ensure that people with a learning disability (no matter how severe that disability) get the support they need to play an active and equal part in society.
So, how far off this goal are we as a society? What are the particular challenges ahead? And what would Mencap like to see happen? These are the questions I want to address now.
Let’s start by taking a look at the bigger picture, at what rights people have and what the Government is doing to champion them. The first thing to recognise here is how much things have changed since Mencap was founded, and this is shown in detail in Brian’s excellent history of Mencap.
The most notable highlights in this are: the 1970 Education (Handicapped Children) Act (which deemed that no child should be considered ‘ineducable’), the 1990 NHS and Community Care Act, the 1995 Disability Discrimination Act and the 2001 Valuing People White Paper 2001 Valuing People White Paperon the future of learning disability services.
Bringing this up to date, there has been a raft of public policies and strategies recently that also promise to have a big impact on the lives of people with a learning disability, their families and carers.
These include: the Prime Minister’s Strategy Unit’s report Improving the Life Chances of Disabled People (which sets the year 2025 as a target for all disabled people to have equality in society), the Department of Health’s White Paper on adult health and social care, Our Health, Our Care, Our Say and the Disability Rights Commission’s Shaping the Future of Equality. Also, as from December 2006, the Disability Discrimination Act will include a
duty on all public bodies in England and Wales to promote equality for disabled people.
This book is not the place for a detailed analysis and critique of these far-ranging proposals and strategies. What I can say is that Mencap welcomes this package of measures, in principle, as a means of ensuring that people with a learning disability get the support they need to live as equal citizens. It shows that there has been a much-needed paradigm shift in social policy away from the old welfare model of getting support if you can’t do things to supporting people to do things for themselves.
But there’s a big difference between policy and action and we still have some major concerns about things actually getting done. Most significantly, it often seems that people with a learning disability get forgotten about among the wider disability population.
The Government also still seems to have a silo mentality towards providing services, with a lack of joined-up thinking and effective read-across between its various departments and strategies. The challenge here is to find innovative ways to use resources to meet needs, pooling them where necessary.
We’d also like to see much more evidence of how the Government is going to involve people with a learning disability in planning and testing services. And Parliament should spend much more time scrutinising progress made in the aftermath of legislation and policy
I don’t mean to be overly critical; the direction of travel is good. But the bottom line is that policies alone don’t change anything. In fact, the biggest single thing that needs to happen in order for people with a learning disability to have equality is a marked shift in attitudes across the board, all the way down from Government to the man on the street.
In practice this means people with a learning disability need to be much more visible in our communities and the media so that there is a common understanding about what learning disability really is. Everything should stem from this shared understanding.
The Government can’t, of course, achieve this single-handedly, but it can certainly take a lead.
So societal attitudes are the key factor in the reality of life for the 1.5 million people with a learning disability in the UK. At the top end, they affect policy, and at the bottom end, they affect people’s everyday experiences.
So let’s now look in more detail – across a range of loose topic headings – at what these experiences are and the challenges they present to both the Government and Mencap.
Children and families
Where better to start than the beginning of life – children and their families. I wish I could say that there have been dramatic improvements over the years in the support they get. And while there have been some positive changes, many families still tell us that they have to fight for everything, that they don’t get the services they need automatically and that they find other people’s attitudes towards them when they are out and about offensive and unhelpful.
These attitudes even sometimes extend to the friends and relatives of families with children with a learning disability. It’s as if the families have to live in a totally separate world, outside the networks of support that exist for other families. The fact that you have a child with a learning disability can effectively define your whole family unit as different and ‘to be avoided’.
As one mother put it: ‘I come from a family of immigrants, but never have I experienced such discrimination’.
It’s something of a paradox. At Mencap we will keep raising the needs and rights of children as an ‘issue’ that the Government must have on its social agenda; yet ultimately our aim is to show that, as long as the right support services are in place, having a child with a learning disability doesn’t really have to be such an ‘issue’ (as in a ‘problem’) at all.
And if this was the case – if there was widespread acceptance and inclusion of children with a learning disability and their families in every section of society as a given – everything else would fall into place.
Parents wouldn’t have to worry that their child’s long-term future is secure (an anxiety that often transfers to the children themselves as they pick up snatches of fraught conversations about what school they’ll be going to, whether their transition plan is in place or whether the local authority will pay for this or that service).
Indeed, mainstream schools would have the facilities and staff training in place to include children with a learning disability in a meaningful way (making the whole mainstream versus special school debate redundant).
Children with a learning disability would be able to form lasting friendships with their non-disabled peers, rather than spending the majority of their time with their parents and this would be major step in bringing to an end the appalling bullying that many children with a learning disability still face on a daily basis.
So what can we do about all this at Mencap? Well, we can’t change things on our own. But we can harangue, influence, persuade and provide useful information. It’s all about keeping up the pressure on the Government and our public institutions to ensure that their laudable aims for meeting the needs of children generally (and disabled children specifically) – as set out in legislation and policy – really do include children with a learning disability.
We want them to recognise that services that meet children’s and families’ needs are not a luxury that parents should have to be grateful for but their right.
Profound and multiple learning disabilities
Perhaps the most disadvantaged group of people in society, however, are those with profound and multiple learning disabilities. It goes against the grain to lump anyone into a group – at Mencap we like to think about people as individuals.
But there is a good reason, in this case, to think of a group, as sometimes that’s the only way to get their needs recognised.
What people in this group have in common is their need for extensive support, often round-the-clock care. This also means we have to think about the needs of the people who care for them, usually parents or family members, for whom caring can be a full-time job – unpaid, of course. And the reality is that this group, who are in the greatest need, often get the least support from the authorities.
At Mencap we hear of case after case of a shocking lack of services, as documented in two recent hard-hitting reports No Ordinary Life and Breaking Point. Some of these stories beggar belief.
Part of the reason for this situation can be traced back to a shift in service provision for people with complex needs. Traditionally, where it was provided it came from the NHS, but ever since the long-stay hospitals started to shut down (a good thing in itself ) local social services have had to step in.
As a result there is something of a postcode lottery for services, and in some areas people with profound and multiple learning disabilities end up in totally inappropriate places, like psychiatric assessment units.
Meanwhile, the families who do manage to get some services still face so many barriers to ‘normal’ life on a daily basis – unable to use public transport, or to find a public toilet anywhere that has the special facilities they need (a changing bench and lifting hoist).
In short, Government and local authorities tend to despair when trying to plan for the needs of this group. But if they really want to ensure that everyone with a learning disability is able to participate in society they will have to be much more imaginative and innovative in how they support people with profound and multiple learning disabilities.
At Mencap, this is exactly what we have been exploring in the past few years. The key phrase here is ‘meaningful representation’: finding ways to meet, on their own terms, people who can’t speak or use other conventional forms of communication.
Recently we have run a pilot scheme in multimedia profiling, which uses a range of technologies, including videos and cameras, to build up a picture of a person, their likes and dislikes, their choices and preferences.
Ultimately, it all comes down to rights and values. And what I find so extraordinary in this day and age is that when it comes to people with profound and multiple learning disabilities not only do we have to argue for the support and investment that will ensure their dignity and quality of life, we actually have to argue for the right to life itself.
Recent high profile cases, like baby Charlotte Wyatt, have brought this home all too clearly. That’s why I’m absolutely committed to ensuring that Mencap continues to champion the rights of people with profound and multiple learning disabilities very publicly and very vociferously.
In some ways it’s much easier for us to champion the rights of people with milder learning disabilities. That’s because the changes we are arguing for are, on the face of it, more achievable and in line with the Government’s social welfare agenda, particularly when it comes to employment.
Currently people with a learning disability are the most excluded group of people in the workforce – only one in ten has a job (of people with a learning disability known to social services), compared to five in ten for disabled people generally.
The reason for this is a fundamental misconception among employers and Government that people with a learning disability can’t work, which itself stems from ignorance about what learning disability actually is.
Many people who do work are exploited, doing mundane jobs for as little as £1 an hour in so-called work preparation schemes. Government programmes are often highly inflexible to the needs of people with a learning disability. For example, people have to work sixteen hours or more to access funding support under its Workstep programme. Yet many people with a learning disability find the progression towards sixteen hours much harder than those with other disabilities.
We want the Government to find ways for people to get into the world of work – and off benefits – without having to work sixteen hours straightaway.
Recent proposed reforms to incapacity benefit and welfare provision are certainly a step in the right direction, recognising that many disabled people want to and can work. But we are concerned that there just isn’t the right support in place to make this happen for people with a learning disability.
Indeed, with the rollout of its Pathways to Work programme the Government appears to be mainly concerned with people whose health conditions can be ‘managed’ or ‘cured’, which totally misses the point as far as people with a learning disability are concerned. There is a real danger that all people with a learning disability will be considered too disabled or sick to work and just left to rot.
We know from our own experiences running our Pathway Employment Service that it doesn’t have to be like this. People with a learning disability just need a bit more support getting a job and then learning how to do it, but once they’re in it, they do it as well as anyone else, and on average stay in it three times longer than other people.
Encouragingly, the private sector is beginning to understand that this isn’t about charity but business, pure and simple. We’ve demonstrated this clearly through our WorkRight programme, a best practice model for the kind of workplace changes employers need to make to help progress people’s careers. It aims to get 500 people with a learning disability into work by 2008.
We’re now extending the programme to local authorities, potentially opening up thousands of jobs. And, to be fair to the Government, it appears our message is getting through: the Valuing People Support Team recently published a set of guides for employers and employees about changes that can be made in the workplace.
As ever, the biggest potential stumbling block to rapid progress is a lack of funding. This affects our own education employment and services. For example, we run three residential colleges teaching young people with a learning disability aged sixteen to twenty-five the essential skills for a successful transition to adult life. Most of the students’ accommodation costs are paid for by the Learning and Skills Council (LSC). But it’s likely that the LSC will soon expect funding to come from elsewhere, meaning Mencap may need to partner with other organisations.
Limited funding streams are also putting a squeeze on our Pathway Employment Service. The Department of Work and Pensions is downsizing, which means funding for JobCentre Plus is becoming more competitive and schemes like Access to Work are in a state of flux. Notwithstanding these concerns, we are still extremely hopeful that the employment revolution we dream of for people with a learning disability really can happen. But we may have to be patient.
Housing and community care
Things look much less positive, however, when it comes to housing and community care. I should, perhaps, have dealt with this topic earlier, because the place where we live is the base from which we build our lives, and this applies to people with a learning disability as much as anyone else.
Thankfully, most of the long-stay hospitals have now been closed down. When this process started in the 1980s, people began to move into residential care homes, ordinary houses in the community.
This was a huge step forward at the time. Things have moved on now. There has been a welcome trend away from services provided by the NHS towards services provided by or purchased by local authorities. And there is growing recognition that a group of people with a learning disability don’t necessarily all need the same kind of support. Different people want different things and everyone wants to be able to choose how to lead their life – hence the move towards supported living schemes, like those pioneered by my social services team in Cheshire in the eighties. Schemes like this are on the increase, and organisations like Mencap – and our sister charity, Golden Lane Housing – are leading the way in providing them.
But it’s all too easy to gloss over the fact that still today the vast majority of people with a learning disability don’t benefit from the freedoms and opportunities that supported living can deliver.
There are an estimated 40,000 people with a learning disability living in residential care homes and a variety of NHS campuses and units, some of which, alarmingly, still hark back to the old-fashioned institutions.
An even bigger concern is the fact that around 50–60 per cent of adults with a learning disability still live in the family home. Almost 30,000 of these are cared for by a parent over the age of seventy. Local authorities simply don’t view them as a high enough priority for housing. Their view tends to be: ‘If someone has a roof over their head, then what is the problem?’ Indeed, the whole system of assessment for ‘community care’ is cumbersome and restrictive, and tends to be used as a rationing device.
We want to see a much simpler assessment system, based on entitlement, giving people the right to live where they want with the support that allows them to have the greatest possible independence and control over their lives.
It all boils down to attitudes: people with a learning disability just aren’t seen as worth investing in. The absurdity of this is that local authorities would save themselves a lot of money in the long run if they planned ahead for people’s housing needs, as they would avoid crisis situations requiring expensive solutions.
The thrust of government thinking on this issue does finally seem to be changing now, albeit slowly, but the jury is still out on whether it will deliver what it promises.
We’re much more hopeful that we’ll see the changes we want on our campaigning agenda for health. Our 2004 Treat me right! report highlighted the poor quality healthcare services people with a learning disability often get.
People with a learning disability have poorer health than the rest of the population. Though in some cases this is due to medical conditions (e.g. chest problems or epilepsy) that can be linked to the person’s disability, it’s also due to people’s lifestyles and circumstances (e.g. whether they have a job and are active in society, their diet, etc.). And this gives us a clue as to the real root of the problem: ignorance and prejudice.
The majority of medical professionals simply don’t understand learning disability because they haven’t had the right training. In many cases, they attribute people’s presenting conditions and symptoms to the learning disability. In short, professionals often take the approach that people with a learning disability don’t warrant the same attention as other people and, in the worst cases, this attitude can lead to premature, unnecessary death.
Our Treat me right! report was a big wake-up call to the Government and we’re pleased that it has agreed to carry out a feasibility study into a confidential inquiry into premature deaths. But it’s now vital that this is backed up by a range of other measures and Mencap can play a big role in making these happen.
We want healthcare staff to have better training about learning disability. People with a learning disability themselves can provide this training, working alongside medical students. We can contribute to this process through our links with consultation forums, like the GMC’s Patient and Public Reference Group.
It’s also about strengthening the patient’s voice, which is a welcome trend currently in the health service, away from paternalism and towards more shared responsibility. Mencap can give a lead on this, thanks to our expertise in developing communication tools that allow people who cannot speak to express themselves.
Linked to this, we also want to see more accessible information and advice about health in surgeries and hospitals. And we want annual health checks to be offered to everyone with a learning disability. On this point, it will be interesting to see how the Government’s proposals for regular health MOTs for all UK citizens will be applied to people with a disability in general.
Behind everything on our wishlist lies one fundamental need: for medical professionals, families and carers to have much higher expectations for the health and well-being of people with a learning disability.
We are, in fact, optimistic that the Government’s strategy, as set out in its proposals for adult health and social care, is heading in the right direction. Mencap is now ideally placed to be a key partner in putting this strategy into practice.
Thanks to our network of local groups, Mencap is also in a good position to lead the way in developing advocacy services. Advocacy is a relatively new concept, having sprung out of the rapid rise of the disability rights movement. In a nutshell, it’s about supporting people to express their feelings and choices and to have a greater say in running their own lives. Some advocacy services empower people to speak up for themselves; others act as mediators for people who cannot use language.
But the key common factor that all successful services must share is total independence. In other words, the aim of the service must be to allow people’s views to be known, without these views being adulterated or interpreted in any way.
Because of this crucial need for independence, some people question whether Mencap – as a provider of other services, particularly residential care – should really be running advocacy projects at all. We are at risk, the argument runs, of running into a conflict of interests. This is a valid concern, but it doesn’t mean Mencap should avoid getting involved altogether. There is, undoubtedly, a massive need for advocacy services across the country. And truth be told, the Government has not yet developed a robust strategy for delivering or funding them. In light of this urgent need, Mencap has a real contribution to make to the advocacy movement: we can pass on to others what we have learnt in the recent past from running many successful projects.
That’s why we want to support organisations and groups in setting up a range of advocacy services across the country. Once we have helped them get up and running, we can let them be fully independent.
We shouldn’t underestimate the huge difference that effective advocacy can make to the lives of people with a learning disability. But there are some major challenges ahead. In particular, advocacy services must be integrated into mainstream provision so that a much higher proportion of people with a learning disability can access them.
There is also a huge need for both paid staff and volunteers who are prepared to commit to being advocates on a medium- to long-term basis – particularly for people with profound and multiple learning disabilities. In this case, effective advocacy relies on innovative approaches such as ‘intensive interactive training’, where the advocate spends a great deal of time with the person, earning their trust and getting to understand them through a range of techniques, such as mirroring their behaviour. This kind of intensive advocacy support requires significant investment, and it remains to be seen where this might come from.
Lack of funding has been a common theme throughout this overview of the main issues facing people with a learning disability and their families and carers. This funding problem is a result of the poor attitudes generally held towards people with a learning disability. And these poor attitudes are the strongest unifying factor in all the main obstacles identified here to people with a learning disability having equal rights and chances in society.
If people with a learning disability were truly valued – as having just as much to offer as anyone else – then we wouldn’t have to keep fighting for the right services and support. It’s as simple as that.
In this sense, Mencap’s campaigning message is very straightforward: we want people with a learning disability to be properly valued. But we’re not complacent about the challenges that lie ahead for us as an organisation.
One of the main challenges will be how we can work best with our network of local groups and members. We mustn’t forget, after all, that the national organisation grew out of local activism.
We currently have more than 13,000 members, including people with a learning disability, their families and other supporters. It’s important that we get a good balance between each of these groups, both locally, through our groups and district committees, and nationally, at the National Assembly (which is like Mencap’s parliament).
Since the last major change to our constitution in 1998, at least one-third of its members must be people with a learning disability.
Today, in fact, half the elected positions at both national and district level are filled by people with a learning disability, which has been an important change in ensuring that people with a learning disability are at the heart of Mencap’s work. But we must allow the voices of families to be heard as well – and we are particularly keen now to draw in more parents and engage them in our work.
It’s also vital that everyone elected to our district committees and National Assembly gets the support they need to fulfil their role. This is about effective, meaningful representation.
It should apply throughout Mencap – to our campaigning, and to the services we provide.
As for our 700 or so local groups, our challenge is to continue to develop strong partnerships with them, sharing knowledge and expertise in how we campaign and provide services. This is very much a two-way process.
So, we must work in a coordinated way, with each partner’s roles and responsibilities clearly defined and agreed. In some cases we will encourage smaller groups to join together in partnership, allowing for very localised activity to continue but supported by a stronger infrastructure. The key driver here is the need for flexibility: Mencap is a big organisation, but we have to be able to adapt to the varying needs of people in different parts of the country.
It’s for this reason that we recently changed the way we provide community support in England, setting up teams in each region to focus on key areas, such as children, people with profound and multiple learning disabilities and family carers.
We also ai