David Starkey, Justice for LB & Me #107days

I wanted to do something for the #107 days campaign because apart from the collective outrage that has been so evident it’s restored my faith in humanity. The sense of positivity it has produced is infectious, heart warming and gives me some hope that things can and will change in the future.

Sara is one of my dearest friends and I’ve known Connor since he was around 5 or 6 years old.  We are part of a group of six close friends who all met when our dudes attended the same academy for crazy little dudes. We call ourselves the “life raft” Our families have all socialised together for years and so obviously our kids all grew up knowing each other well too. Connor’s death shocked and saddened all of us more that I can say and we remain incensed that it was so preventable. I’ve spoken a lot about Connor and Sara on my blog, not least because his death came just 6 weeks after the sudden and unexpected death of my husband Bob and we’ve been coping with grief shit stuff on a similar trajectory. Similar but not the same, because of course Bob’s death was no one else’s fault. As I’ve been trying to deal with my own grief I’ve watched my friend and her family endure the most inhumane treatment by those ultimately responsible for their son’s preventable death. Compounding their grief and making dealing with their loss so much harder.

Although I’ve adopted today I’ve been raising the Justice for LB campaign in all the work I do, both for Dimensions UK a Family Consultant and Oxfordshire Family support Network as Transition support coordinator. I’ve raised it in training, in meetings and parent workshops, basically any chance I get to get this story out there. And, I’ll continue to do this long after the #107 days campaign.

OxFSN are also working with a number of leading national organisations to develop a project to support families who’s kids end up in ATU’s based on our FLOAT idea. We are working with Oxfordshire County Council and the CCG to review and improve learning disability services generally in Oxfordshire and are putting together a bid for funding to continue our work on improving transition to adulthood with our local self advocacy group, My Life My Choice.

My contribution for day #94 though focuses on the SEND reforms. I’m speaking at the the Sunday Times Education Festival. It’s a massive event focussing on all things education not just special educational needs. There are a lot of high profile speakers and I’m up against David Starkey (and many others) in my time slot, so I’m not sure how many people will come along and listen to me, but it’s a chance to talk about the SEND reforms and the Children and Families Act and what it should mean to families and I was thrilled to be asked. I’m dedicating my talk to Connor and his family

My main focus is on Person Centred approaches and why without them the SEND reforms are set to fail. The need for this way of working in health, education and social care to become embedded in the systems that surround our children and the need for families to be treated as respected partners, involved throughout. I think the SEND reforms bring a number of great opportunities.The 0-25 single plan should ensure that there is more joined up working between the different agencies and across children’s and adult services. The local offer should ensure that all the information parents and professionals need is all in one place and easily accessible (and hopefully jargon free). With the great opportunities come many challenges too. A massive culture shift within all services is needed and although new strategies are proposed as the old adage goes “culture eats strategy for breakfast” and changing culture is never easy.

Underpinning all of the reforms are person centred approaches. Personalisation has been around for a while now. Education, however have yet to really come on board with the whole personalisation agenda and in my experience the use of person centred planning in schools has not really been embedded. I’ve seen some great examples of good practice around the country but in training I’ve delivered, many education professionals have argued that they already take an individualised approach to teaching and this has resulted in some resistance to change. If the reforms are to work then change they must! The difficulties this has caused have been perhaps more noticeable in the transition to adulthood stage but with a single plan and a greater need to all work together throughout the 0-25 age range it’s imperative that there is a consistent approach, a single way of working and a common language. Person Centred approaches provide this. The person centred thinking tools used to plan and reflect can easily be used by everyone. They are simple, practical, grounded in common sense and rooted in the principles of inclusion and equality. This isn’t just something that can be used for disabled children and adults; it works for everyone. So, personalising education should be adopted by all schools and not be something different that happens in special education.

Person centred planning naturally fosters better partnership working too. You have to work together and include everyone and everyone gets their say. Working and planning is done in a way that promotes mutual respect and understanding in a spirit of openness and transparency. By working this way we are more likely to lose the “them and us” mentality. We can move away from” the professional knows best” or the “the parent knows best” view that can become so adversarial and instead look at how we can work together positively and productively for the best outcomes for and, more importantly with the person we all care about.

People who have embraced this way of working would now never work in any other way and as a parent it’s the only thing that has ever made any real sense to me. I’m passionate about it… mainly because I’ve seen how it has changed my son Guy’s life, given him a voice and consequently some choice and control in how he lives his life day to day. We initially started using person centred planning when he was in the moving into adulthood stage (‘transition’)  and it’s made a huge difference both for him and me. It helped us to plan the life he has now, where he lives, who he lives with and how he needs to be supported. It helps us remain completely involved in his life as a respected part of the team of people who support him. Governments will come and go but as far as I’m concerned person centred approaches will remain for Guy, whatever policies they bring in he will remain at the centre of everything we do and this is my message to the families and professionals I speak to today.

Far too often I’ve seen the devastating consequences of what can happen when individual needs are overlooked in order to fit within existing systems, processes and paperwork and families are ignored and excluded. Sometimes as we are all too familiar with now the consequences lead to the ultimate misery, the loss of a much loved child.

Connor didn’t have a person centred plan, although we were trying to arrange a planning session just weeks before he entered the unit. There was poor planning for his move into adult life despite the positive and person centred aspirations for him from his family. People, systems and processes failed him in the worst way possible. Within the unit, as well as the lack of basic ‘care’, person centred approaches were non-existent and his family sidelined and excluded. In contrast however, Nico had a full and detailed person centred plan which was ignored. Nico’s family were helped to do this by some of the most skilled person centred practitioners in the country, who happened to know the family…So clearly, simply having a plan, however good it is, isn’t the answer. It HAS to be followed. Those working with our children need to live and breathe person centred principles, It’s not enough to say they are person centred they must demonstrate it in their thinking and practice (and the language they use).

I remain convinced that if this way of working had been embedded in the culture of this Trust, at senior level and on the ground, then both young men would be alive today. And, if it’s completely embedded in the culture of all services and agencies that work with our kids it will prevent such totally avoidable tragedies happening again.

Sadly we can’t change what happened to Connor but those of us who knew him (and many that didn’t but got to know him through the pages of Sara’s blog) are determined that some positive change will happen as a result of his death. We will do everything in our power to make sure that it doesn’t happen again to any other young dude. We will strive to improve services to ensure that people with learning disabilities and their families have a good quality of life and we will fight for…#justiceforLB   #JusticeforNico   #justiceforallthedudes Gail, Guy & Connor

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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