Lots of things have happened since the Just Invisible Report was released in May of 2018 ... here's a list ...
The ME Advocacy Network Australia launched a political campaign to lobby for inclusion of people with ME/CFS and other chronic illnesses in the upcoming telehealth program, getting people to email their local members. At least twenty federal MPs were contacted with a letter that included mention of the Just Invisible report!
Naomi Anderson told the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability about the Just Invisible report as part of a consultation. Then in August I also told them about it when they consulted with me, and they confirmed they'd read it!
Allie Reilly and myself wrote a letter to Federal Health Minister Greg Hunt about the government's plans to expand telehealth services over 10 years, explaining that homebound/bedridden people needed to be included and that we couldn't wait 10 years for this to occur. A copy of the Just Invisible report was included and referred to in the letter.
Multiple people, myself included, have cited the Just Invisible report in our answers to the Jean Hailes Women's Health Survey.
Emerge Australia used the Just Invisible report as part of the education of their new telehealth nurse, who will be trialing telehealth case management for ME/CFS sufferers.
I did an interview-by-email with Every Australian Counts last year, about the Just Invisible report and about dealing with the NDIS while bedridden. Now the election is done it's time to share it with the world:
I made a submission to the Shaping the future of disability policy for 2020 and beyond enquiry, which will be used to shape the next National Disability Strategy document for 2020 and beyond.
I pointed out how they need to acknowledge homebound/bedridden Australians as a disability group requiring special treatment, that we need epidemiological research about this group, and that we need to reform the medical system as described in the Just Invisible report, so that homebound/bedridden people can access appropriate medical care and disability supports.
At least one other person also referenced the Just Invisible report in their own National Disability Strategy submission.
I cited the Just Invisible report as part of my response to the Disabled People's Organisations Australia Survey which they are using to build their shadow report for the Australian Convention on the Rights of Persons with Disabilities (CRPD) review.
Emerge Australia cited the Just Invisible report as part of an application under the Victorian Advocacy Futures grants program. I also wrote a personal letter of support to go with their application, again citing the report.
The application did not result in a grant being awarded, but the application got good feedback and Emerge were invited to have a one to one coffee meeting offer with the Vic disabilities office to talk more about their work.
Claudia Heath used the Just Invisible report for her response to the Consultation on the Myalgic encephalomyelitis and Chronic fatigue syndrome Advisory Committee Report to the NHMRC.
Rochelle Mayrick told me:
I sent the link in an email to the QLD Dept of: Community Care | Disability and Community Care Investment and Provider Transition| Disability Services Commissioning | Disability Services, in December 2018.
The reaction was one of gratitude. It actually gave them a jolt to realise they had forgotten the house/bed- bound.
Marijo from 3CR radio's Chronically Chilled show interviewed Ricky about the Just Invisible report and other topics.
Chronically Chilled Ricky Buchanan interview page, including audio
Participated in an online interview/workshop for 1800RESPECT about how they can improve their services for people with disabilities who are trying to escape from domestic violence and other types of violence. We talked a lot about people who are homebound/bedridden are unable to escape from violent situations for multiple reasons, and I referenced the Just Invisible report which the interviewer had also read at my request.
The Victorian Advocacy Futures Plan 2018-2020 has been released and it actually specifies homebound/bedridden people as a group that advocates need to reach out to! I feel like this is the first time I've ever seen people like me mentioned in a government document of any type, so I'm extra pleased I made the submission to the report!
Made a submission to the Victorian Advocacy Futures Plan 2018-2020 about the need for disability advocacy to recognise that homebound/bedridden people are a specific needs group they need to reach out to, and some methods about doing that. I made the submission by talking to someone from the Victorian DHHS over the phone because I was too sick to type at the time, and I was really unhappy with the resulting text but I submitted it anyway, because something is better than nothing.
Allie Reilly sent the Just Invisible report to Senator Jordan Steele-John's offices as part of the informaiton for the Greens who were preparing their ME/CFS policy at the time.
Allie Reiley, the ME/CFS and The NDIS Facebook page and me, Ricky Buchanan, made a submission to the National Disability Agreement Review which cited and quoted the Just Invisible report.
ME/CFS South Australia cited the Just Invisible report in their submission to the Select Committee on Poverty in South Australia
Allie Reilly sent the Just Invisible report to Greg Hunt's office prior to a meeting with him, and then referred to them when she met with him via telephone in June 2018.
Participated in a an interview with BreastScreen Victoria about the reasons that women with disabilities are under-screened for cancers, including breast cancer, cervical cancer and bowel cancer. I talked a lot about barriers for homebound and bedridden women and recommended that the people running the interview read the Just Invisible report.
Suresh Rajan of The Stringer has written a great article about the Just Invisible report, including some quotes from me. Thanks Suresh!
There's a short pointer to the Just Invisible report on the #MEAction website for people with ME/CFS:
Release Day! The Just Invisible report was sent out into the world on the 14th of May 2018, and received lots of social media attention:
I sent a press release announcing the Just Invisible report to:
- 15 journalists who wrote in health/disability
- 38 disability and health advocacy organisations
- 4 large cross-disability groups
- 10 individual disability advocates who had expressed interest in the report
- 3 organisations working in social justice generally
- 7 other medical and health related organisations
A letter explaining the report's contents and why it was important was sent to:
- All of the state/territory and federal ministers of health and disability
- All the state/territory and federal health departments
- 7 Greens politicians with relevant interests or personal connections
- 5 other politicians with relevant interests or who I had personal connections to
- A bunch of other relevant medical groups including the RACGP, AMA, and NMHRC