It is recommended that clubs and club officials find out about the unique needs of their communities, including among people with disabilities and chronic health conditions.
While not every person with epilepsy will identify as having a disability, the Sport New Zealand – Ihi Aotearoa has developed the The Integrity Framework which is designed to support ‘Every Body’ involved in play, active recreation and sport, and ensure we take a consistent approach to maintaining fairness and equity for play, active recreation and sport..
Some points that are particularly useful to supporting some people living with epilepsy, include:
- People with disability have the right to participate in sport. Find out more about your rights in the New Zealand Human Rights
- It is not necessary to acquire extensive knowledge of the disability. The official simply needs to understand how the impairment affects the participant’s performance. It may be worth considering whether training is necessary to get a general understanding of epilepsy, the person’s unique seizure triggers, as well as the administration of emergency medication where relevant. This is may be particularly valuable for those working directly with a person with epilepsy.
- Effective communication is essential, especially for participants who have a sensory or intellectual disability. Some people living with epilepsy also have other conditions (co-morbidities), and 1 in 4 people living with cognitive disabilities will also have epilepsy. This makes effective communication especially important.
- Do not under-estimate ability – use the same approach to officiating as you would for all participants. Many people with epilepsy can excel in sports, given sufficient support and understanding from the club and its community.
- Speak directly to the participant, not through a carer or third person. Epilepsy New Zealand promotes person-centred care, and part of this means empowering people with epilepsy to be central to decisions affecting their life and wellbeing. While some people living with epilepsy may need more input from a carer or third person than others, it is important to balance this with enabling their autonomy (independence).