It emerged in a great spirit of optimism, announcing itself as “a new strategy for learning disability for the twenty-first century” with a foreword by prime minister Tony Blair.
Rarely, if ever, had the spotlight been on people with learning disabilities in such a positive way. For the first time for a learning disability strategy, the government had consulted with and actively involved people with learning disabilities themselves, who worked with professionals, families, campaigners and academics to create it.
Valuing People was based on four key principles of rights, independence, choice and inclusion. Its aims included better life choices, more choice and control, support for carers, better health and improved opportunities in housing and employment.
There was even new money on the table to support the implementation of the strategy – tens of millions of pounds was made available to local authorities and voluntary organisations in a learning disability development fund and an implementation support fund.
For 10 years, there was a feeling of optimism and positivity, as ideas that had been talked about for years became possible in reality.
Valuing People was not perfect of course. In retrospect, its ideas about full-time employment in mainstream jobs for people with the most profound disabilities seem based more on wishful thinking than anything else, and had the effect of the specialist needs of this group being ignored in the hope that they would somehow meld with everyone else.
Some people with mild learning disabilities lost their support when they appeared to be coping well, sometimes with disastrous consequences.
The effect on the employment rate was minimal and many people remained in their communities but somehow not connected to them.
However, whatever retrospective criticisms we might have of Valuing People’s imperfections now, many of us look back on its time with longing and regret that its power has waned and the optimism it brought almost vanished.
There were discernible improvements in the quality of support, involvement, housing options and many other areas. Most of all, for the very first time, people with learning disabilities seemed to have a seat at society’s table and were noticed and heard.
It may come as a surprise to many that, technically, Valuing People is still the learning disability strategy for England. However, this is only because no new strategy has been brought in to replace it. It has been allowed to wither on the vine, gathering dust on a shelf somewhere in the Department of Health and Social Care.
Good Lives: Building Change Together
The framework has six key areas:
- A home
- Communication and staying connected
- The right support
- To love and be loved
- Effective voice – self-advocacy/ advocacy
- Employment and contribution
Time to stop the rot
For the past decade at least, there has been effectively no strategy for learning disability in England at all, and it shows. The never-ending assessment and treatment scandals, the return to large-scale accommodation, the paring back of all but the most basic support, the neglect of families, the absence of employment and housing strategies – all of this speaks to governments that have taken their eyes off the ball and of a group who were allowed a few years in the sun but have now started to be ostracised once more.
It is a dangerous moment – but we must not lose hope. Rather, we must stop the rot and bring public and government focus back on learning disability.
I am delighted therefore that campaigning group Learning Disability England (LDE) have started to build momentum towards a new strategy. Their Good Lives: Building Change Together initiative, which they describe below, has a similar sense of excitement about it to what I and many others felt as Valuing People was being created.
Clearly, some of the lessons of Valuing People have been absorbed, and there is a focus on relationships, belonging and emotional connectedness as well as the practical concerns that featured in 2001.
Crucially, people with learning disabilities are at its heart, and everyone who is part of the learning disability community or connected to it in some way is invited to make their contribution.
Community Living magazine is proud to stand alongside and work with LDE to build and promote Good Lives to get back to the task of making lives better for people with learning disabilities in England, and to make this a government priority once more.
‘It is not an endpoint. It is a framework to start a debate and give ideas for action’ – Learning Disability England invites participation in Good Lives
The Good Lives: Building Change Together framework brings together people’s thoughts and ideas about what it will take for everyone with learning disabilities to be able to live their good life. Work on it started in 2020, when a group of 40 self-advocates came together in Birmingham.
The framework is there for anyone who is interested. LDE hosts it but does not control it. It is not an endpoint. It is not a report. It is a framework to start a debate and give ideas for action.
“In 2022, we do not need any more reports – we just need to get on with changing things so I and all my disabled friends can live our lives,” says Jordan Smith, who co-chairs the self-advocate representative body. This is part of LDE’s “rep body”, made up of self-advocates, families and professionals.
Good Lives has six chapters. Each chapter looks at what is happening now as well as what rights people have. It has examples of work that people are already doing that is brilliant or important. And some ideas for change that anyone can start to use now or campaign for together.
Scott Watkin BEM, paid supporter rep body co-chair, explains: “This framework gives all organisations and workers a co-produced reference point for action they can take straight away or be part of developing wider policy change. It gives us all the chance to work towards something together.”
The first session at the 2022 LDE conference was when Good Lives: Building Change Together went live. Since then, people have been looking at ways they can get involved and contribute to make Good Lives a reality.
Wendy Burt, co-chair of the family and friends rep body, says: “As a family member of someone with a learning disability, I know how important fun, friendships, love and work are to a good life. It is not only day-to-day support I want for my sons but also a rich life with the same ups and downs as anyone else.”
Making it a reality
Good Lives will become a reality only if every individual, every group and every organisation contribute in the ways they best can. So what might you do to turn the framework into real change so all people with learning disabilities can live good lives? Do you have a particular interest in your area? Do you have things you or your group want to share or make happen?
Gary Bourlet, membership and engagement lead, has been looking at some of the things members are doing: “Me and Rachael [Hall], my fellow membership and engagement lead, have been having smaller meetings with individual members to talk to them about work they have been doing that links to Good Lives. We have also been giving other ideas on how they might get more involved.
“Many members and partners, including Adass [Association of Directors of Adult Social Services] and the LGA [Local Government Association], have all been really eager to bring about action and are talking about it with their teams and at meetings.”
Here are some ideas from LDE members for small things that you can do straight away:
- Work in a more collaborative and co-productive way
- Turn plans into action
- Make reasonable adjustments in your organisation
- Grow self-advocacy: promote it more among people with learning disabilities as well as policymakers and make sure those with learning disabilities and their families always have an equal voice around the table
- Spread the word about the framework among your networks.
Lisa Hopkins, chief executive of SeeAbility and an LDE trustee, explains why it matters: “We all know people still aren’t living the lives they choose everywhere, that people don’t have the rights, choice, inclusion and independence that we all expect, and that active citizenship is still a pipe dream for many people with learning disabilities.
“The unique thing about LDE is who actually runs it – it’s not really the chief executive. It’s really run by the representative body made up of self-advocates, families, and professionals.
“It is the strength of their collective voice that I believe will change things for the better and will be the difference we’re all desperate to see.”
SeeAbility is starting to use the Good Lives framework in a number of ways.
“It has given us some ideas for action and we’re working with people we support to use it as part of our own quality of life strategy,” says Hopkins.
“We’re using it to shape our auditing tool to help identify if people we’re here to serve are living a good life. We’re also borrowing ideas of excellence from elsewhere so that we can get better in all that we do.”
People with learning disabilities, who SeeAbility supports or are colleagues, have also commented on the framework.
“Hurrah for change! Hurrah for more good lives! Hurrah for LDE!”
“This shows how LDE brings all of its members together and creates a bigger voice which is needed more than ever.”
“I really hope this is our time and that everything changes so that we all have a good life.”
Action is critical
Hopkins adds: “That, in short, is why I’m both a personal member of LDE and an organisational member, and it’s why I urge you all to engage with Good Lives.
“This stuff is important. In fact, at the moment, it’s easy to argue that it’s critical. Together, we are stronger.”
- Good lives: building change together. Full version: https://tinyurl.com/2p6heknm
- Black and white version: https://tinyurl.com/yr8kmv5u
- Plain English summary: https://tinyurl.com/4exh8k3r
- Join LDE and be part of the movement for change: https://tinyurl.com/yckk53d
