Young people with learning disabilities who are dying have much to contend with. They are not adults, they have a disability and they are coming to the end of life. A triple whammy, it might be said, of ageism and double stigma of disability and death. People generally – and this includes some professionals – do not always feel able to respond well to youth, death and disability.
In developing this Toolkit and ADVANCE framework – commissioned and funded by the Intellectual Disabilities Programme of Health Education England working across Kent, Surrey and Sussex – we brought together colleagues from palliative care and learning disabilities’ practice. We found that those professionals equipped to deal with dying are not always confident to deal with learning disabilities. We found also that those professionals competent in the field of learning disabilities do not always feel competent to deal with dying. The challenges are made more complex when family relationships are strained and there is disagreement as to what is best for the young person.
Our Toolkit puts the young person with learning disabilities first and prioritises, as far as possible, what they would wish for themselves at the end of life. The Toolkit is underpinned by a values-based framework and communication strategies to guide conversations. These conversations aim to ensure the voice of the young person is heard alongside the views of family members and friends.
At the time of writing, the American Nurses’ Association released a statement for consultation entitled ‘Nurses’ Role in the Care of Persons with Intellectual and Developmental Disabilities’ (see https://bit.ly/2rYnrhb). We encourage you to comment on this.
In the section on ‘End-of-Life Considerations’ the document draws attention to few partnerships between palliative care and intellectual disabilities services and states that ‘establishing relationships would contribute to increased understanding, collaboration and quality end-of-life care for this vulnerable population’. This statement is relevant also in the United Kingdom.
It is our hope that resources such as this Toolkit will stimulate conversations and contribute to the development of confidence and competence improving the quality of end-of-life care for young people with learning disabilities.’
The Toolkit and project resources can be accessed free from the International Care Ethics Observatory website –
https://www.surrey.ac.uk/international-care-ethics-observatory/research
Written by Ann Gallagher
Workforce Development for & with People with Intellectual Disabilities 
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