Written by Clare Melvin
Talking End of Life
Death is a part of life. Too often death is a taboo in our society, and people avoid talking about or planning for it. This taboo is even more obvious when people with intellectual disability are part of these conversations. People with intellectual disability should learn about dying and death just as they learn about every other aspect of life.
Teaching about the end of life is hard though and a fantastic new resource from Australia is now available online which shows how to teach people with intellectual disability about the end of life. Talking End of Life…with people with intellectual disability (TEL) is a toolkit designed for disability support workers but is also helpful for others including families, health professionals, and educators.
TEL reflects 10 years of Australian research on end of life and people with intellectual disability. TEL is an online version of the Dying to Talk project, an Australian Research Council funded partnership between The University of Sydney, Keele University in the UK, and Unisson Disability.
At their website you can watch a video with Professor Roger Stancliffe from the University of Sydney explaining why TEL is important. There is also a comprehensive resource section including: guidance on addressing death and dying, mourning, grief and loss, end of life decisions including funerals, Wills and bequeathing, and organ donation.
The TEL Modules:
TEL comprises 12 modules which are shown in the picture above.
Each TEL module can be done as a standalone, or any number of modules can be completed in any order. The modules can be undertaken individually, or as a facilitated group session and simple language is used, so it is easy to understand for many different people.
TEL modules include case studies, video examples, teaching tips, problem solving exercises, and reflection questions and cover:
- How do I do this? Any or all of these 5 modules will help if you’re unsure about your role, how to teach about the end of life, or how to manage cultural beliefs or feelings.
- Teaching how to understand end of life: Any or all of these 3 modules will help you to teach about dying, death, and loss, grief and mourning.
- Teaching the planning options: Any or all of these 4 modules will help if you want to teach about how to plan for dying and death.
Child-centred communication strategies to encourage children to talk.
Communicating effectively with vulnerable children and young people is not always easy. Despite practitioners and carers knowing this is an important area of their work, research shows that practice is not always as effective as it could be.
The Centre for Child Protection, University of Kent has announced its new free Massive Online Open Course (MOOC) for Learning child-centred communication strategies to encourage children to talk.
This free online course will help you to understand: reasons why a child or young person may become vulnerable; age-appropriate activities and techniques from the pre-verbal to adolescent stages; innovative ways of facilitating communication; challenges and barriers to effective communication with vulnerable children and young people, and; levels of vulnerability experienced by a child or young person, including areas of safeguarding.
Let’s talk about Sex… Continuing the Conversation.
Talking about sex can be uncomfortable at the best of times, even when with close friends, family or partners, and all too often it has been neglected, repressed and denied in people with learning disabilities. There does seem to be change in the air and a number of groups, campaigns and resources have begun, like Salt N Pepa in the 1990s, to talk about sex – so let’s keep the conversation going!
Love and Sex
Supported Loving is a Campaign that believes people with learning disabilities have the right to fall in love and have relationships if they want to, and it is the responsibility of family members, friends and care and support staff, including service managers, to provide support that helps make this happen. Supported Loving recognises the challenges in attaining this, as although relationships can be wonderful, enriching and life-enhancing, they are also sometimes difficult, painful and even abusive.
Supported Loving have a network you can join (as an individuals with learning disabilities, or a family or carer, or member of staff) to hear the latest news of the Campaign and also attend their network events (next one is 9th of October in Birmingham. Join the network here and sign up for the next event here). In their audio and video blogs you can hear from individuals such as Katie, who found love through a dating website, and Leanne and David who were supported to move in together by their service provider. You can also hear from Liz Wilson, a Family Consultant from Dimensions, and mother of a 21 year old daughter with a learning disability, who would love to start the conversation about sex and relationships with families, as well the driving force behind Supported Loving, Dr Claire Bates, who talks about opening the ‘valentine’s can of worms’ and challenging ingrained cultural barriers to love and sex.
Dr Claire Bates, of Supported Loving, has also edited the new edition of Sexuality and Learning Disabilities (2nd edition). The book has been updated to include contemporary issues like sex, relationships and the internet, domestic violence and supporting people with learning disabilities who identify as LGBT. It is accessible for support workers, managers in learning disability service settings, supported housing, community learning disability teams, social workers, students in health and social care and any professional who may find themselves supporting a person with a learning disability from time to time. The book may also be helpful for family members.
Also talking about love, sex and relationships and people with learning disabilities are Association for Real Change (ARC). ARC have two workshops – Personal Relationships, Sexuality and People with Learning Disabilities Awareness, coming up in Exeter on 28th September and London on 12th October. The workshops are aimed at all frontline staff, and previous workshops have been highly popular and well-received.
Helping Each Other was an Association for Real Change (ARC) three year project, funded by Comic Relief. The innovative project trained 12 young people with learning disabilities, who have experienced sexual exploitation, to become peer trainers, and supported them to deliver awareness sessions to 200 other young people with learning disabilities. They were also supported to make presentations at conferences and workshops, and to groups of professionals.
As part of the project, materials were developed that can be used independently to raise awareness about sexual exploitation with more young people with learning disabilities including guidance on sexual exploitation, relationship and video case studies.
Access their training materials (for young people and staff) here.
- Still time to sign up to the GLLDCOP free launch event! 7th November 2018 and the Holiday Inn London Bloomsbury. Come along and join the new community providing opportunities for people with learning disabilities, families, carers and professionals. Find out more and Book your place here.