Day 83: H&SA and BILD respond #107days

A number of the remaining #107days are shared days, and today is a powerful duo of H&SA and BILD. Alicia, from the Housing and Support Alliance (H&SA) and Ann, from British Institute of Learning Disability (BILD) both got in touch to adopt a day with a real urge to do something to make progress. We are delighted at the actions they have taken and feel confident that they will support real progress towards #JusticeforLB and all dudes.

So, first of all why did they want to get involved with supporting #107days and #JusticeforLB? Alicia, from Housing & Support Alliance had this to say:

H&SA is supporting #JusticeforLB firstly because Connor and his family only wanted something simple and straightforward, to get the help they needed and had a right to in difficult times, and it ended in the most unimaginable tragedy. We know that people with learning disabilities that have the most complicated needs can and do get good help, a good place to live and the support they need to live there. It is doable and affordable yet all over the country there are still many people with learning disabilities and families getting poor and mediocre support, being sent away from the people they love because there is no decent support locally and being needlessly hospitalised when all they need is for professionals to listen and respond. It is an outrage.

and Ann from BILD:

Like so many, we at BILD, the British Institute of Learning Disabilities, were dismayed to hear of the death of Connor Sparrowhawk, yet another young person dying whilst in ‘care’.

We were then shocked, again like many others, when the independent report made it clear that his death would likely not have happened had the right kind of support been in place in the unit where has was staying. We can only imagine the distress of his family and friends knowing that his death was preventable.

So many people with learning disabilities and autism have suffered from the lack of the kind of support they have every right to expect and should have. Too often organisations who are there to provide care and support fail to do so. It is people with learning disabilities and autism, and their families, who pay the greatest price.

Then we saw that the organisers of #107days wanted to harness the outrage that emerged in response to Connor’s death to fuel a campaign aimed at ensuring lasting changes and improvements are made. We wanted to join in.

As you can see they both wanted to help make real change. Alicia and her team are doing this:

To support the #107 days campaign H&SA are going to do something practical to help get people with learning disabilities out of institutions. In the latest Winterbourne View Concordat data it says that are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

H&SAs commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:

Day83_HSA

Also happening today is BILD’s action and you can follow it and participate on twitter using #BILDepilepsy.

To show our support we decided to organise a free event on 10 June, called, ‘Epilepsy – what matters?’, aimed at front line staff, families and anyone interested in epilepsy and people with learning disabilities and or autism. As well as the sessions taking place in Birmingham, we will also use the web, social media, and BILD’s many members, to help raise awareness of the issues around epilepsy support for young people with learning disabilities and or autism.

We are delighted to say that the event is full and there was a waiting list.

The topics the event will cover are:

  • Epilepsy misdiagnosis
  • Epilepsy and behaviour
  • Describing seizures
  • Epilepsy – Isn’t that just seizures?
  • Impact of epilepsy on learning and behaviour
  • The link between epilepsy and autism

We are very grateful to Pam Morris, Nurse consultant, and Emma Tingley, the National Services Programme Manager for Young Epilepsy, for being our speakers, and to Janet Cobb for helping to organise and promote the event.

Beyond 10 June, we will capture the available information on epilepsy in young people with learning disabilities and or autism and make sure this is available on the BILD website for visitors and those looking for support.

We would like to wish the #107 Days Campaign every success.

You can check out the programme for today below, and join in on twitter. We’d like to thank the Housing & Support Alliance and the British Institute of Learning Disabilities for their actions.

BILD_Day83

Day 55: Connecting voices #107days

Day 55 was adopted by Paradigm and friends, with an excellent write up being provided by Sally Warren, Jayne Knight and Nan Carle. You can read about their day in full in this attached pdf.

Head heart hands

The day was spent in a community workshop, facilitated by Paradigm and Nan Carle, which focused on connecting the voices of people from around the country to highlight injustices, share thoughts and agree action to stop the crazy, ill thought out decisions that prevent people living valued, ordinary lives. Lives with their family and in their community. In a community space, passionate people (family members, self advocates, researchers, support workers and community members) met for a series of conversations, which lead to a commitment to personal action and to new alliances to ensure collective action.

Group 1

A family who are also fighting for their son/brother, currently in an institution and his voice lost, were part of the workshop. The whole family are in danger of being alienated from the life of their son. They shared their personal story giving a real understanding, credence, strength and power to the need to resolve the abuse and neglect experienced by LB, his family and others.

The workshop was structured around five conversations:

1) How did LB’s story touch me personally, at work and at home?

One of the overriding feelings shared in the group was one of shock and dismay that people are so de-humanised and invisible. The family present explained how they themselves feel like the ‘invisible family, like ghosts’. People’s feeling are reflected in the images created in this montage.

Thoughts and feelings montage

2) What concerns does this bring forward for me, at home and at work?

As you can imagine participants shared a lots of concerns.

The key concerns were:

  • safeguarding systems that isolate people. Where members of the public, families and staff are raising concerns but not being heard. ‘We have a system in place to check people are safe and well, we have followed it so…all must be OK’. Dangerous!
  • complacency: what is it that makes it seem OK to offer a low standard of care? The idea of ‘acceptable rather than best’ is live and kicking…how can this be?!
  • a limited understanding by many of what good support is about and the need to go beyond minimum standard and compliance
  • about language. For people who are not labelled we would use the language of violence, abuse and neglect. Why do we use ‘cuddly language’ when it comes to people who are labelled? A Mum in the group was forbidden from using the word abuse!

3) What resources are present which would help us find real solutions to ensure ordinary, meaningful lives for all?

Creativity, connection and the knowledge of AND belief in what is possible are the resources we all bring. We must get ‘smarter’ at recognising and sharing the range of resources around us all. People, community, families, social groups, skills exchanges, agencies and more. This conversation stimulated more and more resources and ideas. Ideas that people hadn’t all considered (see full write up for more detail).

4) Personal commitments to action

Connecting Our Voices directly links to connecting our action, or as we said our ‘passion for action’. Each and everyone of us as a part to play in ensuring the LB’s life and death is not forgotten. People’s commitments to action were varied with people feeling able to contributes in different way but the message was that whatever you can do is important.

5) Shared action

As is typical at the end of a day in a room filled of passionate people determined to be part of a better future, time started running out!  We have created a network to stay connected to ensure mutual support and action. The three areas of collective action identified with initial connections and ideas in place were in relation to: 

  1. collective action to make people aware of what is possible
  2. family support
  3. housing for all

At the end of the day we are puzzled, concerned and angry but the fire in our belly against injustice has been stoked. We’ve made new connections and restored our passion for action and our hearts and minds are connected!

LB was with the group throughout the day with a symbolic empty chair. We are grateful to them for sharing his memory and working together to ensure that improvements happen. There will be a full write up on the Paradigm website in due course and we’ll add a link here when it is available.