We all face loss and bereavement at some point in our lives, and it is well-known that all people grieve differently.
However, one group in Derry wanted to look at the impact of loss and bereavement on those with learning difficulties and autism.
Deborah McGinn, Education & Training Manager from Informing Choices NI, worked with others on The Talk Together Project, in collaboration with Ulster University, which was launched earlier this month in Derry's City Hotel.
Read more: Derry band dedicate fundraiser gig to member's late mum
Deborah spoke to MyDerry about the findings in the report and the importance of talking about grief with those who may have a learning disability or autism.
She said: "Over the past 20 years, myself and my colleague Mark Breslin have delivered Relationships and Sexuality Education (RSE) for people with learning disabilities and autistic people throughout the UK. Over the years, managers and support workers have spoken to me about lack of services around loss and bereavement for people with a learning disability and autistic people. If someone was experiencing grief they might be referred to a clinical psychologist with long waiting lists and there might be very little support in the meantime.
"I then discovered The Ideas Fund who were open for applications for projects with research in the Derry City and Strabane District Council area and we were successful in our application. Our researcher from Ulster University, Dr Grainne McAnee, is a school friend and it was great to work with her on this project.
"There are a number of findings from the project that can be seen in the report. The main one was that the people with a learning disability and autistic people that took part in the project were quite happy to sit down and talk about death, loss and bereavement with us. They spoke about how having conversations with their families and peers really helped them deal with the loss and they wouldn’t want to be left out of these conversations.
"Another important finding was that the staff who are supporting the learning disability and autistic community were getting very little support themselves around loss and bereavement and when a death did occur some staff felt unable to support people.
"We all need to be able to grieve and see that other people grieve. This is no different for people with a learning disability and autistic people.
"Death is something that is unavoidable and I understand that some families may feel that they are protecting their son, daughter, family member but as the project has shown, people want to be included in those conversations. The fears of those who love and support cannot be prioritised over the needs that people with learning disabilities and autistic people have."
The project was dedicated to the late Bronagh McLaughlin, a much-loved and much missed member of Foyle Down Syndrome Trust.
Deborah said: "Bronagh McLaughlin was a member of Foyle Down Syndrome Trust and very sadly died in October 2021. I had met Bronagh a few times and she was always laughing, had a great sense of humour and was a wonderful friend to so many people.
"The learning disability community in Derry is very close knit and everyone was affected by Bronagh’s death, from her family and friends to support staff. Because of this, I asked Bronagh’s family if we could dedicate the report to her memory which they very graciously agreed to."
Going forward, the launch of the project is helping discussions around funding for staff and the importance of talking about grief.
Deborah said: "One of the recommendations in the report is for support staff to be trained around loss and bereavement. We are delighted to announce that we have received further funding from The Ideas Fund to design and deliver a training programme that will not only help staff to better support people with a learning disability and autistic people but will, hopefully, make them feel better supported themselves.
"This training will be co-designed and co-facilitated by ourselves and people with a learning disability and autistic people and will initially run, free of charge, between August and December this year. We already have two schools signed up and are hoping that the Western Trust will get on board too."
The report can be accessed here https://t.co/9uDO7iemcN
Those seeking a hard copy can contact Deborah.mcginn@informingchoicesni.org
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