Health independence for young people with physical disabilities

Making health independence an achievable goal

By Dr Jimmy Chong, Rehab Paediatrician

The MyAbilities youth health team Sarah Newton, left, Claire Dayel-Baker
and Dr Jimmy Chong.

The term transition, in the context of healthcare, describes the period when young people are negotiating the expected movement from a more family centred paediatric health care system to an adult oriented health care system.

Handover to adult services for children usually happens around the age of 16 to 18 years, but preparation for this process sometimes starts much earlier on.

Conversely, there are many instances where there is no corresponding specialty for care to be handed over to.

This often represents an abrupt shift in paradigm and responsibility where conversations about a young person’s health no longer rely on parents or caregivers, but are then dependent on that
young person making decisions about their own healthcare.

Such a time can be both challenging and frightening for individuals and their wider whānau.

We face a lack of purposely developed and routinely available transition programmes in Aotearoa New Zealand for people experiencing conditions including Cerebral Palsy, other neurological disorders and spinal cord injury.

Moreover, existing community-based options are only provided for a small section of school aged children and tend to focus on life and social skills; whereas, there is minimal integration with the
young person’s health needs.

This is the premise for MyAbilities – a strengths-based initiative developed by a team of clinicians who share insights in the field of Paediatric Rehabilitation.

The project start-up has been gratefully funded by the Cerebral Palsy Society of New Zealand and the Wilson Home Trust. 

A series of workshops have recently been running across centres in Auckland, as part of a pilot to connect with our communities.

The sessions utilise goal setting and individualised road mapping tools, while incorporating an online wordcloud platform for facilitating interactive discussions that act as a unique digital fingerprint of the voices and experiences in the room. 

Several key themes have resonated in the responses of workshop attendees. 

They emphasise the importance of creating structured transition programmes that are web accessible and designed so that people with disabilities can use them. 

Health services additionally need to be able to listen and be flexible for youth, and there is overwhelming support for a multidisciplinary wellness clinic and further health transition seminars later on in the year.

These dates will be announced once confirmed.

The vision is to make health independence an achievable goal and to create opportunities that similarly recognise the achievements of young people and foster their leadership potential.

Please contact MyAbilitiesNZ@outlook.com to join our mailing list.

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This article was originally published in the January to April 2023 edition of The Review magazine.

 

For more information:
Melanie Louden
Communications Manager
melanie@cpsociety.org.nz
Mobile: 022 087 8191