For many families, taking care of their health while managing an intellectual disability can be challenging and require additional support services, which can be tricky to find. 

That was the inspiration behind Dr Rachel Skoss’s decision to create a health guide for people with special needs, arising in part due to her own struggles in accessing information. 

Dr Skoss’s son, Andrew, has Down syndrome and, she said, one of the big difficulties has been navigating the health system.

“One of the things for Andrew is his level of comprehension can be limited at times,” she said.

“We need to think about how we teach him and support him to make good decisions and to develop all those health literacy skills that are going to be really useful for him as he grows.”

During the pandemic, the research academic developed a guide to help families access information.

“I know how hard it is to find the right sort of information,” she said.

“It can be really tricky to find.

“I think it could have been useful if [the guide] had been available when Andrew was younger, because it’s been a bit of a journey and I have had to learn a lot along the way.”

Dr Skoss said people with intellectual disabilities were more likely to have common health conditions under-managed.

“[The guide is] thinking about the things we can do to help them when they’re accessing health services, but also the sorts of things we can do with preventative care,” she said. 

The comprehensive guide — Health Care For People Who Need Extra Support — offers help on everything from nutrition and exercise to chronic disease and choosing a doctor.

Dr Skoss said it was a guide to health literacy, supporting the health of people with a cognitive impairment or intellectual disability.

However, the document — which has been published by Western Australia’s Notre Dame University  is also designed to help support workers and carers.

“The organisations could provide the guide to those workers, and build their health literacy and their skills, and [build] understanding about what they can do to support the health of the person with disability,” she said.

“People with intellectual disability should have the opportunity to build health literacy skills [that] are really going to help them, not only with accessing health, but [also] in providing them with the skills and information to make healthy decisions.”

Leticia Grant’s daughter, Allara May, lives with the rare genetic condition called Angelman syndrome.

It causes delayed development, problems with speech and balance, and people with Angelman syndrome often smile and laugh frequently, and have happy, excitable personalities.

Ms Grant said the guide would be a great resource for her in taking care of her daughter. 

“Allara needs help in every area of living,” Ms Grant said.

“She needs help with meals … with personal care.

“There’s nothing that she can do completely independently.

“I think that guide will be a real boon for families and carers supporting someone with intellectual disability, as a bit of a ‘one-stop shop’.”