Those with a psychosocial disability are being failed by the federal government’s arbitrary decision-making on who qualifies for vital health and community services and how under the COVID-19 lockdown.
The COVID-19 restrictions on movement are having a negative impact on a community increasingly unable to access support to remain socially connected. There have been some benefits, however, from new and flexible methods of accessing services such Medicare rebates being extended to phone and online consultations, although these too has received a mixed response.
Julie, who has a disability and cares for her daughter with autism, feels uncomfortable with the lack of privacy. “My psychologist wanted to do TeleHealth, but I can’t with my daughter in the house. She hears everything and is worried enough about me,” she said.
Steve dislikes being disconnected from being face-to-face with his health provider. “I don’t find the phone calls that helpful. It’s mostly small talk, which I’m not good at.”
However, Jackson said that TeleHealth has been a positive. “I don’t want to go into a mental health space because I have had a lot of negative experiences.”
These different experiences highlight how allowing a disabled person to choose how their treatment is delivered is paramount.
For Hannah, online university sessions have been a boon. She has been missing most of her face-to-face classes at university due to anxiety and depression. Now, however, she said she is attending all the online lectures.
Regarding physical exercise, Jackson reported that one “positive” is the fact that she can go for walks with her support staff, even though the organisation does not allow its workers into people’s homes. “I still get anxious, however walking is a very pleasant pastime. I hope, in the future, I will be able to walk by myself.”
Nick, who has no family in Australia or access to support, said his mental health has deteriorated since he has not been able to go to his local gym to mitigate the physical side effects of his medication. He has also had to wait longer for medical appointments, as many specialists he sees have reduced their working hours.
Mary, who has attention deficit hyperactivity disorder and anxiety, feels extremely isolated. “I didn’t go out for more than two weeks because I didn’t have any appointments and I felt guilty about going outside.” Her bulk-billing psychologist also declined to undertake TeleHealth consultations.
Steve rents privately and, not being in touch with his family, is distressed about the lockdown measures. “My unit is noisy and very small. I hate being there. Not everyone has a safe, comfortable home to stay in.”
Many people with a psychosocial disability have a carer or social worker who helps with self-care, cooking, cleaning, shopping, administration and exercise — tasks many of us take for granted but that are a struggle for those with an invisible illness. And many face-to-face support measures have been suspended or limited under the lock-down. This too has a big impact on people’s day-to-day lives.
Jackson said that because support staff are not allowed inside to help her, “clothes are everywhere, dirty dishes are lying around”.
Zoe, who has schizoaffective disorder, said that the lockdown had highlighted the tension between the disability sector and those with disabilities. “So many providers and workers are leaving us without support in a national emergency situation where we need support more than ever.”
Zoe had access to the mental health support provider Mind Australia but, under the lockdown it cancelled all face-to-face support. She has lodged a complaint with the organisation, the federal government and the National Disability Insurance Scheme. That all took a lot of her time and energy. It has also taken its toll on her mental health.
Another person with anxiety and depression expressed that she is receiving a lot of home support since her partner lost their job. She helps with keeping her to “a schedule”, including “making sure I get out of bed, and eat meals, get dressed, [and] shower”.
However, as her partner is still waiting to be approved for JobSeeker, they are also concerned about their finances. Being in limbo makes her anxiety worse.
While Woolworths’ early morning opening hours sounded like it was going to help those with special needs, those on sedative medications make it hard to be up early. Proving that you have a disability, with a government-issued concession card, also made it harder on those without the documentation or who did not want to brave the onerous process at Centrelink.
Even some on the Disability Support Pension and the NDIS have had trouble.
Cathy, who has a physical disability and is a full-time carer for her son, lives in a small country town that is serviced by online grocery delivery.
She said that that they did not qualify for priority online shopping, despite both having a disability pension, because they had not received the requisite authority number from NDIS, despite her son being on a plan.
However, a patient with bipolar disorder who is neither receiving a Centrelink benefit nor an NDIS package, applied for the online grocery priority service and was approved within 24 hours.
For those with a psychosocial disability, the arbitrary nature of the health care system under the COVID-19 lockdown is unfair. The changes were not formulated around the needs of those with a psychosocial disability which has meant that a proportion of the community has been even more disadvantaged.
Steve hopes that as more people are experiencing the impact of self-isolation, it may make them “a little more compassionate towards those who have been living like this all the time, and struggling”.