Learnings and improvements needed to better support people with intellectual disability during COVID-19
People with intellectual disability have faced unique challenges during the outbreak of COVID-19 and need to continue to have their rights and autonomy protected as Australia focuses on its recovery efforts.
Professor Christine Bigby, a disability researcher from Melbourne’s La Trobe University, is one of many calling for better measures to protect the rights of people living with intellectual disabilities.
People with intellectual disabilities often have poorer health, lower health literacy and rely on others to access care, says Professor Bigby.
“In times of crisis, people with intellectual disabilities are heavily reliant on others to uphold their rights. But COVID-19 has shown us that people who are different are often devalued and their rights overlooked,” adds Professor Bigby.
Catherine McAlpine, Chief Executive Officer (CEO) of Inclusion Australia, says that the challenges faced during the pandemic have been numerous for people with intellectual disability.
“We’ve had the challenges of service providers believing that it is their role to make decisions on behalf of people with intellectual disability and that they make decisions that they frame as being in the best interest of people with intellectual disability, but they don’t necessarily check with them that that’s the case.
“There are people with intellectual disability who have been denied access to family or denied access to other support workers or denied [the ability] to just go for a walk and have some exercise.
“Many people with intellectual disability have had restrictions placed on them that are considerably greater than the restrictions required by the government, and so they have not been treated equally with other citizens. There has been a lack of trust that they will obey the rules and therefore, more stringent restrictions have been put on them and in many cases, they have been very unfair. “
Professor Bigby agrees that the pandemic has had a significant impact on people with intellectual disabilities.
“Early in the pandemic, when the public was advised it was safe to keep going to work, if their jobs couldn’t be done at home, some people living with intellectual disabilities were prevented from going to their jobs.
“Then, during the lockdown’s stricter phase, special schools remained open, yet some healthy children were told to stay home.
“And when some respite and day services shut, families simply had to stay home with their loved ones, all unable to leave the house.”
Information about changes is critical during COVID, and Sarah Forbes, Victorian Advocacy League for Individuals with Disability’s (VALID) Advocacy Manager, says that it was often hard for people with intellectual disability to get.
People with intellectual disability, particularly those living in a group setting, were often relying on service providers to receive information and not every service provider was providing at the same level, explained Ms Forbes.
Professor Bigby says the COVID-19 pandemic has highlighted the lack of rights for people with intellectual disability in Australia.
“The pandemic has thrown a spotlight on how shallow the embedding of rights is for people with intellectual disability in Australia.”
Moving forward during COVID-19 and beyond
The current phase of COVID-19 efforts and the experiences of people with an intellectual disability is a learning experience, says Ms Forbes.
“We have seen trends that suggest the use of restrictive practices for people with intellectual disability has gone down doing the stay at home period. One of the thoughts about that is that people are potentially having more control and aren’t necessarily attending things that maybe they weren’t that interested in or may have made them distressed.”
“One of the opportunities here is to think about the ways people’s lives may improve from the experiences they’ve had while staying and making different choices at home.”
Ms McApline says that understanding is needed moving forward through COVID-19 to ensure the needs and rights of people with intellectual disability are met.
“There needs to be an understanding that people with intellectual disabilities are agents in their own right and that it is not okay or appropriate for other parties to make decisions on their behalf without consulting them directly.“
Ms McAlpine also says that support for decision making is essential for people with intellectual disability.
“There needs to be more support for decision making as we come out [of the pandemic]. Support for decision making includes providing information in accessible formats…and an understanding that people need support, even with easy read.
“There needs to be a greater understanding about how and where people with intellectual disability access information, how they use information, and the importance of trusted organisations and trusted supporters which might be family, advocates, family, or individuals support workers.”
Safeguards and visibility are needed to ensure rights are upheld in any setting which Ms Forbes says has been difficult during COVID-19.
She adds that we need to look at what may not have worked in the first phase of the COVID-19 response to ensure those issues do not remain in future response phases.