News - October 2022
Another year another update. Last week there was an expose of the horrors of institutional life in England, I couldn't bring myself to watch what I knew I would see.......I have listened to many parents whose sons and daughters are similar places, I've heard their tears, their devastation, their sadness and their anger. Institutions traumatise, institutions damage, institutions hurt, inflict pain, sever the most important connections ....they are inhumane. There are people seeking to transform in-patient care in England...the only transformation is their closure.
One of the big highlights for me this year has been re-connecting with Jo Watson, someone I met at college too many years ago. Jo and friends run a campaign and organisation called 'Drop the Disorder' and every year they host a stunning global event called 'A Disorder for Everyone', at the heart of the work shared from around the globe is the belief that the trauma and events we experience in our early years goes on to shape our world and our life...here are some links to more information and interview with Gabor Mate that Jo did as part of the event this year. Gabor Mate has recently launched a new book called 'the Myth of Normal'...
YouTube Channel Interview
The more work I do planning alongside people in institutions in this country and elsewhere the more I see how the trauma of institutional life impacts on the person and how their early life experience has shaped their interactions with and relationships with people and the world they live in. Positive Behaviour and ABA type approaches WILL NEVER offer this person the chance to move forward ....in all my work now I advocate for trauma informed approaches to support, planning and work. To coin a phrase from 'A Disorder for Everyone' ....'it is never a case of asking 'What is wrong with you?' but always a question of 'What has happened to you?'
Wishing you all well,
Personal Life Planning
In discussion with colleagues in Europe and a specific meeting with Validity in Budapest the idea of a personal plan structured around Article 19 of the UNCRD came up .....and so did a lot of work. There is now a page on this site that explains a little of the work and shares the framework I've developed. Its open source ...all I ask for is if you use it then let me know how it goes and any changes or improvements you would make.
I have been using it myself in work with a south west NHS organisation to develop 'Personal Life Plans' for a number of people currently living in institutions (or at risk of institutionalisation). If you are interested in finding out more please do drop me a line - email Nic
In Control Shetland
As ever there is an update on work with In Control Scotland and their
new CEO Pauline Lunn.
I've continuing to support Shetland Islands Childrens Social Care Services with their implementation of self-directed support. It's been a good first 9 months, the allocation system is working, families are appreciating a different conversation and the strong focus on outcomes and the next steps are being discussed. These next steps are likely to include exploring the use of individual budgets with care experienced young people. You can find a link to the report covering the first six months here.
The Lunchtime Sessions continue, a review of the last eighteen months shows how much people appreciate these informal sessions are, what they have taken with them into their work and a real desire to see further meetings. A new six month programme has been launched, anyone is welcome...not only those north of the border. If you would like to go on the mailing list then please email June Dunlop. The next five sessions will focus on those 'seven steps' of self-directed support a few of us remember :-)
Building a New Relationship 2022 - In 2011 I with members of the In Control Children and Young people's programme team published a paper outlining how self-directed support could provide a foundation for a new relationship between those needing support and those funding and providing support. With Pauline and Keith at In Control Scotland we have updated this paper and at the same time updated our collection of graphics we use to explain SDS. For In Control Scotland this is a key part of their work to influence how the new National Care Service is developed and how at its core are the values and practice In Control recognises as Self-Directed Support.
Dom na Krasu and Crna, Slovenia - Closing Institutions
In its third year the work being taken forward by two institutions and the Institute for Social Protection in Slovenia continues; I've been out there twice, most recently in September. Work is slow, barriers are many, attitudes slow to change and ongoing 'buildings centred thinking as opposed to person centred working' means the team at IRSSV has had to work really heard - full respect to Andreja Raefalic, Katarina Ficko Maunch, Andraz Kapus, Kaja Zoran and Samo Pirec. November will hopefully see a date being set for the closure of Dom na Krasu an institution for people with mental health support needs, this is will be a big event ...many of the people living there are keen to get out and into their new homes!
Study Visits from Slovenia - with Radical Visions
With John Dalrymple and Frances Brown of Radical Visions we organised two study visits for teams from both institutions to Scotland. The first in August centred on support to people experiencing mental health challenges, the second in October share work to support people with learning disabilities. Both were a real success...it will be good to see what is taken home and is used to shape future support to people.
Dom na Krasu Team, with John and Frances at The Thistle Foundation
Connecting the Connectors with NDTi
I have been working with Bill Love, Helen Bown and others at NDTi as part of a larger piece of work with a support provider in the south west. My contribution has been working with a team from across the area who have been identified as Champions for connecting the people they support into their local communities. It has been a great six months of work with a good group of frontline support workers, all of whom have taken up the challenge in their own way. There are some really good stories coming from the work; hopefully this network within the organisation will be able to Champion the importance of connection in the lives of those being supported for many years to come!
Independent Care Co-ordination
I continue to work with a local area partnership of health and social care and the Court Of Protection as an independent care co-ordinator. Clearly I can't share any more details. It has been good to work alongside a team of professionals who are so committed to supporting someone to have the best life they can in really difficult circumstances. Full respect to the team, they know who they are! I've learnt a huge amount about thoughtful and patient communication as well as getting a hands on experience of the court in progress, and the different legal representatives involved.
External Evaluation of Inclusion Europe's work programme 2018-2022
With the team at IRSSV in Slovenia we successfully bid for and carried out an external evaluation of Inclusion Europe's work programme. It was really good meeting so many people whose values were clear to see and to find out so much about membership, campaigns and their growing presence on social media. Milan, Juri and others work really hard to bring together people with intellectual disabilities and those supporting them across Europe ...and they do a good job! Particular note in recent months should go to their work reaching out and sharing stories from inside Ukraine about the plight of people with intellectual disabilities and their families.
Our work and the report were well received.
Global Guidelines on Deinstitutionalisation
In May ENIL asked me to facilitate consultation on the Global Guidelines on Deinstitutionalisation, these were to be launched in the autumn (and they have been). The work was really interesting; it meant reaching out to many different disabled people, including those living in institutions across Europe, it meant many experiences of how online translation engines can facilitate more confusion than clarity and not produced a really good set of points that ENIL fed back to the UN Committee. It felt really good to contribute through facilitating people to have their voices heard, especially when reading all the different things that people said.
The year ahead!
2021 - 22 has been a really good year, its felt like some foundations are now in place for a really clear offer of support and work; its been really good connecting and planning alongside people in institutions, working with those in the community to connect people and contributing anyway I can to the long term goal of closure of all institutions.
Such a wide and diverse workload has at times stretched my brain a little too much and thats meant making time for good things in my home life......growing vegetables, making pickle, Wednesday climbing ...or following Caedmon up routes on Dartmoor and elsewhere, cutting chopping and stacking a winters worth of firewood and climbing mountains with Tonia ....all these things bring smile and warmth to my life.
A big thank you to all those I share my life with ...at home, at work and across the ether!