Week 4: The Art and the Politics of Listening and Not Listening to Families #107days

Our final blog post this week, on listening or non-listening to families, parents and disabled people comes from Mark Brown:

We don’t realise it but we – the families of children and young adults and adults with learning difficulties are immensely powerful. For decades now our stories have been used to shape aspects of health education and social care policy and with it the lives of tens if not hundreds of thousands. And with those stories and those policies have gone budgets of hundreds of millions of pounds and the jobs and livelihoods of a significant sector of the health, education and social care economy.
For me the problem isn’t always that we aren’t being listened to – it’s that once we have spoken – our stories and experiences are increasingly being manipulated, miss-used and appropriated. It happens to us as individuals and it happens to us as a community. The art of listening and not listening to families has become a significant weapon in the macro and micro-politics of power and we are subject to it as individuals and as a community. I’ll start with how we are listened to as individual families.

Listening and not listening to Individual Families
One of the first things that may happen to us, is that the practitioner or organisation concerned will decide if you are somebody who should or needs to be listened to, or if your opinions can be thrown onto the can be dismissed pile. I’ll come back to the can be dismissed pile a bit later. But if your opinion survives the initial assessment, a decision will then be made about whether your opinion is problematic or useful.

Useful opinions are those that make no additional demands on services. They can be especially useful if they can be used as evidence of what a good service is being provided. Whereas problematic opinions are those that have to be listened to but which demand a level, or approach to service provision that requires additional or atypical resources.

How these problematic opinions are dealt with will depend upon the ethos and expertise of the provider. The better the provider the more they will be able to deploy their resources flexibly and the more Person Centred their approach is likely to be. This kind of service provider or commissioner exists, in fact there are lots of them but the more financial pressure providers come under, the more difficult it becomes to deliver a genuinely person centred approach.

In my opinion providers who are unable to maintain or who have never had, a particularly Person or Family Centred Approach will probably begin to adopt strategies that will allow them marginalise the family. Allowing them to caste their views into the can be dismissed pile. Practitioners have a range of tools at their disposal that allow them to dismiss the views of family members and the Mental Capacity Act has become a particularly useful way of dealing with problematic family members. But it isn’t confined to that.

For those with younger children one of the most effective ways of dismissing the opinions of families was to assert that a parent had failed to adjust to their child’s diagnosis or disability. Parental demands for additional or specialist support – beyond that which was being offered – were clear evidence that a parent hadn’t yet come to terms with a diagnosis. This is seen as particularly in the case of family members who have demanded expensive out of area provision or really outrageous things like – speech therapy. Fortunately the SEND Tribunal and the Courts haven’t always agreed.

But the broader problem is that the consequence of not listening to the views of families isn’t just that a child, young person or adult may not get the speech therapy they need. The problem is that they may not get the support they need when taking a bath. They may not get the support they need to be able to manage their behaviour well enough to be able to keep themselves within their community, and then of course they may not even get the healthcare they need to keep them alive.

Listening and not listening to our community
But the Art of Listening and Not Listening is not just confined to us as individual families. We are listened and not listened to as a community. For generations learning disability was excluded from our society and it wasn’t until the post war period that things began to change at all. As for the voice of families in my opinion this didn’t really begin until Caroline Glendinning wrote Unshared Care: Parents and their Disabled Children in 1983. In the years after that York and a number of other Universities, working in partnership with the Joseph Rowntree Foundation, conducted a stream of research which genuinely listened to the voices of families. At first the focus was on the “burden” of care but with an increasing acknowledgement of the rights of disabled people, the focus turned to the creative ways in which families sought to overcome their challenges in a way that was positive and inclusive. Bryony Beresford’s Positively Parents is an excellent example of how researchers have been able to listen to and represent the voices of families not only as the carers of their children but also as their champions.

Through the late nineties and well into the first decade of the 21st Century, researchers and a good number of practitioners displayed a genuine commitment to representing the voices of families and adults with leaning difficulties. It was a genuine attempt to transform the lives of people with learning difficulties regardless of their age. Eventually this research paid off and in my opinion initiatives like Valuing People, Early Support and Aiming High for Disabled Children reflected some of the positive outcomes that listening to the voices of people with learning difficulties and to their families were able to bring.

The ethos of this process was carried into the work that the current government put into The Care Act 2014 and the Children and Families Act 2014. Families and adults with learning difficulties have been closely involved in both but I believe there is a fundamental difference in the way in which the voices of families in particular have been listened to and used. Whilst far from perfect the policy developed out of the research carried out in the late nineties and early 21st Century, genuinely used people’s experiences and opinions to inform policy development and implementation. In contrast to this the Children and Families Act in particular, has used the experiences of some families far more than those of others and as a result the policy has been skewed toward the interests of those groups within our community who were more active and whose entitlements the government felt more inclined to support.

Well that’s my opinion and we won’t really know if I’m right until we’ve had a decade of children being excluded from schools and of adults not getting the support they are entitled to because the Care Act hasn’t been adequately funded. The problem is that even then we will struggle to know, because most of the people who aren’t getting a decent service or who challenge the practice of providers – will have had their opinions placed upon the can be dismissed pile and the Art and the Politics of listening and not listening to families will have come full circle and the family that can be dismissed has become a community that can be divided, marginalised and discarded.

But it doesn’t have to be like this….

Day 104: Voices to be heard #107days

Today is another three way share, this time between Sunnyside Rural Trust, Bringing Us Together, and inControl.

First up, Sunnyside Rural Trust who adopted today to share a report of the celebration and launch (yesterday) of a special and innovative Memorial Garden. The garden, which is a physical representation of the poems collected in The Memoir Garden, has been created as a place for remembrance.

A group of 18 trainees from Sunnyside Rural Trust, who all have learning disabilities, worked with local author Emma Claire Sweeney. She explored their reminiscences and collaborated with each one to produce a poem. The resulting book, The Memoir Garden, was well received both by literary critics and by the learning disability community.

The participants valued this all too rare validation of their experiences. At the launch, Roxy Simmons, one of the 18, read a speech prepared by the group, saying “We thought it was important for people to understand about our lives. We don’t want people to think that we are thick. We want people to know that we have the same feelings, relationships, and experiences as everyone else. We will maintain the garden together as a place of peace and quiet where we can sit and reminisce. In particular, this is a space where we will remember our old friend’s Leon and Marie”.

The garden was completed within 107 days to support the #JusticeforLB #107days campaign. The work on the garden has been carried out by the team at the Activity Centre along with volunteering help from Berkhamsted Waitrose. Painted glass bottles, depicting images from each poem along with the poet’s names, hang from the trees. The garden’s centrepiece, a wooden sculpture of a book, was unveiled at the launch. The sculpture is engraved with the words ‘Voices to be heard’.

You can read the full press release from the event yesterday here. Next up, Bringing Us Together:

The #JusticeforLB campaign highlights our fears as parents. It has had a profound impact on many of us and has brought us together as we reflect, feel emotional and share our fears. Each of us knows that this could happen to our own son or daughter.

We are fearful that our young people’s voice will be lost, that they will not be listened to and that we, the people who love them the most, will be left out of vital decision making. We have huge concerns about the following questions:

• What happens to our young people when we are dead or no longer able to look after them ourselves?
• How do we keep them strong and supported to make decisions that have a huge impact on their lives?
• How do we keep our young people safe as they grow up into a world that is full of prejudice, fear, abuse and discrimination?
• How do we keep their voice at the centre of all planning and decision making?
• How do we convince others that our sons and daughters, whatever their level of impairment, have a voice that must be listened to if they are to be happy, strong and safe?

For many of us our years of involvement and knowledge of our own children and the systems they encounter brings us a deep insight into our children’s well-being. We know what makes them happy, how they communicate and what support they need. We know what they are trying to say and we work hard at sharing that information with others.

However, only too often our understanding is ignored; our young people are misunderstood and problems arise. We want our young people and adults to be independent and safe. We want our children and young people to grow up knowing and feeling what it is like to be in the ‘driving seat’ and to understand the real power of making decisions, what good looks like, and what support they need to be part of their communities.

Our event to mark Day 104 of #107days of action for #JusticeforLB will give families the opportunity to come together to talk about and share stories of:

• The madness of the system and what we can practically do amongst such madness
• How can we make the system less mad? We will look at what is working and what is not working in the current system
• How do we keep ourselves strong within the current madness?

Through telling our stories and using positive ways that families have used it plus ways in which it has been abused will enable families to learn from one another.

The event is a collaboration between The Cameron Trust, Bringing Us Together and the Centre for Welfare Reform.

Last, but by no means least, is In Control:

For the past eight years, In Control has been working with a growing number of services, children, young people and families. Although this work often focuses on the systems needed to make personal budgets work, the real drive to this work is ensuring good support for all children and young people, and the recognition that some may need more support than others. We never loose sight of what this is really about…valuing and cherishing every child’s right to aspire, learn, enjoy and take part in the life of their family and local community in ways that make sense to them, and for families to get the support they need to provide a healthy, happy and nurturing home for their children.

The experience of LB and his family is one of many recent reminders that we, somewhere along the line have a gone a bit off track, have forgotten why we are supporting children and young people and have ended up with systems and support that lead to tragedies like those of LB and his family. We are starting our day (Day 104), chaired by Miro Griffiths, with a presentation by two parents, Nikki and Tricia. Nikki Delgarno, mum of Ethan, and Tricia Nicoll, mum of Ella and Cieran, both share a powerful story of the challenges of the system and the resilience needed to keep going.

But what does the future hold for Ethan, Ella and Cieran? With over 100 people from children’s services, including many parents, we have a chance to discuss and set out how we can change the future for these and many other children and young people, for us and the community we work with every day. Day 104 is an opportunity to step towards ending such experiences as those of LB and his family, of Josh and his family in Cornwall, of Nico and many others.

Following Nikki, Tricia and a group discussion we will be hearing from those involved in leading the Winterbourne programme and from Action for Children who will share a great example of what is possible if everyone commits to working together and supporting a child and their family. We will share presentations and notes from the whole morning and as suggested by #JusticeforLB we will be asking everyone to commit to taking one action which will make a difference for children and young people they know.

With so much awesome happening today, we’re feeling ever more confident that #JusticeforLB really will result in improvements for all dudes. Thank you all.

Day 99: Local experiences, national concerns #107days

Day 99 is another shared day. It was adopted by CHANGE and OxFSN, two organisations actually improving provision for people with learning disabilities, not just talking about it!

CHANGE are holding their national event today, together with Lumos, for people with learning disabilities ‘Our Voices, Our Choices, Our Freedom‘ in Leeds.

The event aims at freeing adults, young people and children from institutions in the UK and across Europe. You can follow the day on the hashtag #voiceschoices. The twitter feed so far suggest a great day is being had.

The other group sharing Day 99 is Oxfordshire Family Support Network (OxFSN). When asked why they are supporting #107days and #JusticeforLB they said this:

Oxfordshire Family Support Network (OxFSN) is a (very) small charity that provides independent information, advice and support by families for families of people with learning disabilities. Set up by family carers who wanted to use their experience to help others in the same situation we strive to improve the lives of people with learning disabilities and their families.

We wanted to be part of the #107 days because like so many others we were shocked and saddened by what has happened to Connor and his family. Our aim as a charity is to inform, inspire and involve families of people with learning disabilities. We practice and promote person centred thinking and practice, delivering training and workshops to parents and professionals who work with our relatives and we attempted to support Connor, Sara and her family during his time in the unit. At Sara’s request we facilitated a person centred CPA meeting with Sara and staff at STATT (evidenced in the independent report into his preventable death)

Since Connor’s death we have been beavering away behind the scenes on projects we feel could make a difference to other families.

Today OxFSN, together with Healthwatch Oxfordshire, launch their new report, A local experience of national concern, dedicated to LB’s memory.

 This report, funded by Healthwatch Oxfordshire forms part of a scoping process for further work which we hope will ultimately help other families around the country as well as those closer to home.

The report highlights the failures in respect of the current system in Oxfordshire and calls on local commissioners to work with families and people who use services to create services which meet their needs by working with them as ‘experts by experience’.

It has also identified a range of issues that require further scrutiny, including the following:

• The problems associated with the transition between children’s and adult services;
• The frequent failures to provide information and support to enable families to make informed choices about which services to use;
• A proposal to undertake scoping work on developing a peer-to-peer network of support and advocacy for families, with the suggestion that Oxfordshire could be a potential pilot area to test out a peer advocacy and support model;
• The importance of services and commissioners working with families to seek solutions rather than perceiving families as part of the problem.

Jan Sunman, author of the report and project worker for OxFSN  said:

‘Our purpose in writing this report was to give a voice to a very hidden group of families, and to show how they struggle with fragile support systems that need to radically change in order that they and their relatives can have a basic quality of life that the rest of us take for granted.  Families are isolated and desperate for good support and advice. They often have a poor understanding of the rights of their relatives’.

On a related note if you would like to know more about your legal position then check out our web chat #JusticeforLBLaw taking place next Monday.

Day 71: WeLDnurses finale #107days

Day 71 was the day of our third and final twitter chat in conjunction with WeLDNurses.

I’ve waxed lyrical about them before, and am going to repeat myself again, because sometimes we all need to repeat ourselves several times for people to take notice:

I was reflecting on how strong the grass roots/frontline/on the ground response has been to #107days and #JusticeforLB. Amongst the families, carers, dudes, researchers, advocates, activists and academics who have stepped up, along with many more, there is one professional group who (personal view here) have really risen to the challenge of learning from what happened to LB. That’s not to say they’re the only group, and I’m not singling them out as favourites, rather acknowledging that as a professional group, nurses of people with learning disabilities, could have responded with anger, or shame, or disbelief, or avoidance, or many other ways. Instead many learning disability nurses have embraced our campaign and fully supported it.

That was the introduction from Day 43 Death by Indifference, but they also previously adopted Day 15 for Epilepsy Management. Today’s chat was focused on Working together with families, carers and people with a learning disability. 

As has been the case with each of these chats there was a real energy, frenetic pace in fact. An honest and open discussion between those working in learning disability services, especially learning disability nurses and educators, but also some social workers, some students and of course a large number of parents, carers and JusticeforLB supporters who I can’t neatly label.

You can read a full transcript of the discussion here. Key themes were around listening, really listening, starting with the person, how to handle conflict and an acknowledgment that there really is no such thing as a ‘difficult family’, simply people worn down by an unresponsive system.

The characteristic of these chats has been the contribution, the openness and of course the banter. I for one will miss them, although hopefully many of us will continue to join in with #WeLDNs chats, long after #107days.

Day 52: Afternoon tea #107days

Day 52 was adopted by Pippa Murray from ibk initiatives in Sheffield. Here’s why Pippa decided to get involved:

We wanted to do something for Justice for LB because my own teenage son Kim, another beautiful cool dude, died as the result of severe, intractable epilepsy. His death could not have been avoided and I feel privileged to have had the experience of supporting him to die with dignity. I felt outraged when I heard of the tragic circumstances of LB’s death.

Disabled children and young people have so much to give to the world and yet we live in a world that, for the most part, fails to recognise their worth. ibk (which stands for ‘inspired by Kim’) is an organisation set up to raise the voices, aspirations and quality of life of disabled children, young people & their families. We get to hear of many terrible stories but this is one of the worst. We want to be part of a movement to stand up against such discrimination and ignorant thinking. We are touched by LB’s death and moved by the courage and compassion of his family to lead this campaign. Thank you for letting us be part of LB’s legacy.

We are delighted that Pippa and ibk are supporting #107days and #JusticeforLB. If you are near Sheffield today and have time they’ve guaranteed a warm welcome.

This is what you could be involved with:

Our tea is for disabled children, young people, family, friends & Personal Assistants. For this special occasion, we are raising awareness about Justice for LB; and having a mosaic artist come to help us put together an art piece which everyone can take part in. We are including the letters LB in the piece to remind us of LB’s life, untimely death and to keep us focussed on our aim of citizenship for all. (We will send you a photo of the completed piece). Our teas are lively, chaotic events attended by families and their friends.

We have over 80 people booked to come on Saturday, but there is room for more. The tea and mosaic making takes place at St Mary’s Church Community Centre, Bramall Lane, Sheffield, S2 4QZ. We start mosaic making at 4pm; tea will be served at about 5.15 and we go on chatting and mosaic making till 7pm.

As we all continue to try and piece together some sense from the senseless loss of LB, a mosaic and the chance to meet and share with others, seems like a very symbolic and fitting act. We hope that everyone attending has a great time and we can’t wait to see the end result.