New health care guide for families with special needs hailed as a one-stop shop for health management

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

That was the inspiration behind Dr. Rachel Skoss’ decision to create a health guide for people with special needs, which stemmed in part from her own difficulties accessing information.

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

“One of the things for Andrew is that his level of understanding can be limited at times,” he said.

“We need to think about how we teach him and support him to make good decisions and develop all those health literacy skills that will really help him as he grows up.”

Dr. Rachel Skoss says the guide would have been helpful when her son, Andrew, was younger. (ABC NewsAbby Richards)

During the pandemic, the academic researcher produced a guide to help families access information.

“I know how difficult it is to find the right kind of information,” he said.

“It can be very difficult to find.

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

Dr. Skoss said that people with intellectual disabilities were more likely to have poorly controlled common health conditions.

“[The guide is] thinking about the things we can do to help them when they access health services, but also the kinds of things we can do with preventive care,” he said.

A woman reading a web page about communication between doctors and patients.
Dr. Rachel Skoss has created a comprehensive resource guide for health professionals, caregivers, and families of people with intellectual disabilities.(ABC NewsAbby Richards)

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

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

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

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

“People with intellectual disabilities should have the opportunity to develop health literacy skills [that] are really going to help them, not only with access to health, but [also] in giving them the skills and information to make healthy choices.

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

Medium shot of Allara smiling and looking to the side as her mother stands next to her and smiles at her
Leticia Grant (left) says the guide will be a wonderful resource for her and her daughter, Allara May, 22 (right).(ABC News: Grace Burma )

It causes developmental delay, problems with speech and balance, and people with Angelman syndrome often smile and laugh frequently, and have cheerful and excitable personalities.

Mrs. Grant said that the guide would be a great resource for her in caring for her daughter.

“Allara needs help in all areas of life,” said Ms. Grant.

“She needs help with meals… with personal care.

“There is nothing she can do completely independently.

“I think the guide will be a great help to families and carers supporting someone with an intellectual disability, as a ‘one stop shop’.”

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