COVID, intellectual disability & rights

Leading disability researcher Professor Christine Bigby is calling for better measures to protect the rights of people living with intellectual disabilities after seeing the potential for those rights to be eroded during the pandemic.

Professor Bigby said people with intellectual disabilities often already had poorer health, lower health literacy and rely on others to access care.

The La Trobe University Professor is Chief Investigator of the Australian arm of a major new international study investigating the impact of COVID-19 on people with intellectual disabilities, their families and service providers.

“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,” Professor Bigby said.

“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,” Professor Bigby said.

For people used to routines through their jobs, schools and outings, these are major and sometimes distressing upheavals.

“The pandemic has thrown a spotlight on how shallow the embedding of rights is for people with intellectual disability in Australia.”

Professor Bigby said support workers too had experienced anxiety during the pandemic, when they should have been able to focus on their jobs.

“Many support workers had no personal protective equipment in the early stages of the pandemic, have not been able to take clients on group activities or outings, and visitors have been banned from residential homes, causing extra stress and challenges for these disability workers,” Professor Bigby said.

The international study, funded by the Irish Health Board, involves researchers in Ireland, the UK, the USA, Netherlands, Zambia, Czech Republic, India and Norway. Professor Bigby is the only Australian researcher taking part.

The group will develop an online survey for caregivers around the world. The survey will ask about symptoms, access to treatment and equipment, and the impact of social distancing measures during the pandemic.

The global findings will be used to draft policy and practice guidelines on how best to support people with intellectual disabilities, their families and support services during pandemics and other natural disasters.

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