Striving for equality: the challenges of living with a disability - Diabetes WA
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Statistics show that one in five Australians have a disability, 11 per cent of whom are living with diabetes. But when we talk about disability, there’s no one-size-fits-all definition.
Disabilities come in all shapes and sizes, from physical and intellectual to developmental, sensory, neurological and psychosocial.
Diabetes is among the leading causes of disability and, if not properly managed, can lead to lower limb amputation, vision impairment, kidney failure and cardiovascular disease.
According to a report on Diabetes and disability: impairments, activity limitations, participation restrictions and comorbidities carried out by the Australian Institute of Health and Welfare (AIHW) in October 2013, people living with diabetes are twice as likely to have a disability compared to people without.
In Australia, there are more than 500,000 people with an intellectual or developmental disability, which equates to around 3 per cent of the population.
Research has also shown that people with intellectual and developmental disabilities are up to three times more likely to develop diabetes.
But despite the higher risks of developing diabetes among the different disability populations, there has been little focus on the co-existence of disability and diabetes in the healthcare space.
Living with a disability and diabetes: what are the biggest challenges?
Not every disability is visible – some may be physical where a person needs a walking aid or wheelchair, while others may be intellectual, sensory, psychosocial or developmental.
And while living with diabetes can be a challenge in itself, for people with a disability, managing their diabetes day-to-day can add another layer of difficulty to their everyday life.
People With Disabilities Western Australia (PWDWA) executive director Samantha Jenkinson said while prevention is often the key when it comes to reducing the onset of
type 2 diabetes, there is a lack of educational and self-management resources for those with an intellectual or learning disability.
“One of the things we often see is that, right at that very beginning of the prevention stage, in particular for type 2 diabetes, it involves (information) about diet, exercise and a whole pile of things that are not targeted at people with disability,” she said.
“It’s not necessarily communicated in the right format for people with disability and it doesn’t take into account whether someone already has a physical disability, and what that means in terms of being able to exercise.”
Anecdotal evidence that has circulated among the different disability populations, as well as disability advocacy groups, also suggests that there is a lack of quality, equitable healthcare for people with disability compared to the non-disabled.
So much so that in December 2019, it was announced that the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability would prepare a report based on an investigation into healthcare for people with an intellectual disability.
Based on feedback from participants, the Disability Royal Commission will explore a range of issues such as communication and physical barriers, cost and funding, as well as the attitudes and assumptions by health professionals who may attribute symptoms to a person’s disability rather than to a health issue.
A hearing into health care took place in February, where the commission heard from people with intellectual disabilities as well as their parents and carers, medical practitioners, advocacy groups and government representatives.
In recent years, there have also been cases which illustrate a lack of understanding towards the specific needs of people with disabilities who are also faced with the challenges of managing chronic diseases like diabetes.
In 2018, an Australian family won an appeal to secure funding through the National Disability Insurance Scheme (NDIS) for a nurse to administer insulin three times a day for their loved one, who has an intellectual disability and type 1 diabetes.
Then in 2019, 34-year-old Colin Burchell – who has cerebral palsy and diabetes – won a legal challenge against the NDIS to fund his $15,000-a-year food bill to cover his special dietary requirements.
As a result of his cerebral palsy, Mr Burchell can only consume thickened liquid food, which comes at a huge expense.
Credentialled diabetes educator and founder of South Australian diabetes clinic EdHealth Australia Jayne Lehmann has experienced firsthand the challenges of caring for a loved one with an intellectual disability.
While caring for her daughter Sarah – who had Dravet syndrome and sadly passed away last December – Mrs Lehman is well-versed on the issues that often arise for people who are trying to navigate their way around the disability support and health services sectors.
Drawing from her experiences as Sarah’s primary carer, Mrs Lehmann felt compelled to share her story with the Disability Royal Commission and was invited to present her submission at the health care hearing in February.
“There are a number of issues around the NDIS and health (services sector), the two spaces don’t understand each other at all,” she said.
“So you’ve got people caught in the middle who need targeted health support but they need disability support as well to be able to access that. But equally, there’s not that accessibility of health services for people with intellectual disability to have their needs catered for in a way that it can be delivered as a quality service, as is their right, like every other Australian citizen.”
The journey for equality: initiatives to improve the lives of people living with a disability and diabetes.
For people living with diabetes, there are a range of support services, programs and workshops that are accessible for anyone who wants to better understand the condition and learn how to put good self-management into practice.
But as it stands, there are no educational diabetes resources designed for people with an intellectual or learning disability, in particular when it comes to understanding the value and importance of good self-management on their health.
In a bid to bridge this gap, the Australian Diabetes Educators Association (ADEA) is developing Easy Read educational resources and animated videos which aim to provide a better understanding of diabetes management for people with an intellectual or developmental disability (IDD), as well as resources for support workers on how they can better support a person with IDD during routine visits to a healthcare professional.
Easy Read, sometimes known as Easy English, is a way of presenting information in the simplest form and often uses a variety of images to support accompanying words or text.
ADEA project manager Janet Kafadar said the NDSS-funded project recognises the need for accessible, educational diabetes resources within the disability space, especially given the prevalence of diabetes among the IDD community.
“The (Easy Read resources) are very visual, so lots of pictures and diagrams,” Ms Kafadar said.
“The videos we are creating are little animations that will be anywhere between one minute to a minute and a half long, so really short, easy to digest information.”
As part of the project, the ADEA has also developed a comprehensive guide for healthcare professionals that will cover how to communicate with a person who has an intellectual or developmental disability about their diabetes.
“We’re also creating resources for carers and for support organisations, as there has been a lot of information especially in regards to the legal framework to administering insulin,
so we had a legal team do the research for us and look into whether a support worker can administer insulin, obviously with the right training,
and we found that yes, it’s just different for every State,” Ms Kafadar said. “So it’s a very big project with lots of areas to cover.”
Perth-based credentialled diabetes educator Patricia Marshall, who was involved in the original expert reference group for the project, said the idea to create the resources was prompted by concerns that people with disability have difficulty managing their diabetes.
She said this is often due to their difficulty communicating with health professionals, as well as a lack of understanding about diabetes and the importance of good self-management from both the person with disability and the disability support worker.
“So we thought we would target those three groups and provide resources to try and improve the situation,” she said.
“So with the health professionals, the emphasis has been on communication and we’ve developed a guide that starts off explaining a bit about intellectual disability, what it is, what it entails, the communication problems they may encounter and some information on how to better communicate with people with a disability. We’re also creating an online course to supplement that written guide.
“The printed resources for people with diabetes and an intellectual disability covers a bit about what diabetes is, and eating guidelines, but also what to do when you visit a health professional.
“So it is to help people get a bit more out of their healthcare visit.”
Developmental Disability WA chief executive Mary Butterworth said the development of the Easy Read resources and animated videos are a positive outcome for people with intellectual disability who may already grapple with the everyday challenges of day to day routines in addition to managing their diabetes.
“It is wonderful news to hear that they have recognised the need for Easy Read diabetes information and are working with people with intellectual disability and their families to develop the content,” she said.
Mrs Lehmann, who was also involved in the project, said it was a positive move towards helping people with intellectual disability understand how they can better manage their diabetes.
“They are starting to look fantastic,” she said. “If you get it right for people with intellectual disability, you get it right for people with English as a second language who’ve got memory issues, people with mental health problems, immigrants, people who are feeling very stressed, it actually helps everybody.”
The resources for health professionals are now available and can be downloaded here. The Easy Read resources are expected to be released in the coming months.

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