Liam Butler interviews NIC McKENZIE on making Advance Care Planning accessible to older people with intellectual disabilities.

Liam Butler: How can Advance Care Planning become more accessible to older people with Intellectual Disabilities?

Nic McKenzie: There is a growing awareness, both in New Zealand and internationally, of the importance and benefits of Advance Care Planning – planning what we want to have happen at the end of our lives.  People with intellectual disabilities also want to be involved in developing their own Advance Care Plans, but there has been limited information to guide them and their support networks.

IDEA Services (the service arm of IHC) and the Donald Beasley Institute recently led a research project, funded by the NZ Frozen Funds Charitable Trust, aimed at finding out what makes Advance Care Planning successful from the perspective of people with intellectual disability.

The results of the project were encouraging, showing that people with intellectual disabilities benefited from Advance Care Planning, and essentially wanted the same things as people in the general population.  The things of most importance to this group were that their plan had a focus on goals for living as well as preparing for the end of life, that their decisions were respected, that there was openness and honesty about their situation and the options available to them, that people took time to help them understand, and it went at their pace.

The findings also indicated that a combination of specialist facilitation and medical/palliative knowledge was required.  Medical/palliative knowledge enabled treatment and medical-decision content to be covered, while specialist facilitation ensured that people were supported with their unique learning and communication needs.  For example all of the participants needed the process to progress more slowly than is usual, to have information adapted and presented in different ways, sometimes using pictures, visual resources and alternative forms of communication.  There is definitely room for disability service professionals and health professionals to work together in a more co-ordinated way, to achieve great ACP outcomes for people with intellectual disability.  Each has complementary skills that can’t be easily replicated by the other.

If you have family member with an intellectual disability and you or they are worried about the future, developing an ACP is one of the things that will provide some comfort and certainty, knowing that their wishes have been recorded and are there in writing for health professionals and disability support staff to follow.  I recommend using a disability-specific ACP template called “Living Well: thinking and planning for the end of your life”.  This template enables information to be collected in a way that meets the needs of people with intellectual disability, and can then be translated onto a more widely recognised plan such as the NZ Advance Care Planning Co-operative’s My Advance Care Plan.

Reports related to this research can be found at http://www.donaldbeasley.org.nz/resources/publications/frozen-funds-publications/advance-care-planning/

Nic McKenzie is a project manager and consultant who works with service provider organisations in the disability sector.

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