12/05/2024
*Survey Link*
https://sprw.io/stt-paeFR
Warning for Distressing Content.
Posted on behalf of Yvonne who has requested that comments be switched off.
'Sadly, Mother’s Day is a day I’ll never get to share again with my son, Thomas. This has been my second Mother’s Day without him, given he died in an NDIS house in March of 2023. He had just turned 18 years old.
Below is a photo of Thomas (younger), us together (3 weeks prior to passing), and a Mother’s Day card which I found at the bottom of his cupboard the day after he died. Thomas had ASD, was assessed as having a PDA profile, and also had ADHD and dysgraphia. Given these issues, he was often forgetful and had forgotten or misplaced the card from the year prior. It’s now an absolute gift which I treasure.
Thomas had lived in the out of home care system since he was 15 years old. The circumstances surrounding his entry into out of home care is highly complex, as are most issues when PDA is involved. Thomas had not been assessed as having PDA until he was 16 years old. Prior to this, I did not even know PDA existed.
I’m currently formulating a response to the coroner concerning Thomas’ death. In this response, I’m wanting to highlight the many challenges and obstacles faced by parents and carers of PDA children, and by those who have PDA themselves. To support my response, I have developed a survey.
The survey is a deep dive into both the carer and child’s experience of PDA. It covers both past and present experiences, and asks questions which are sometimes direct and confronting. Given our families lived experience of PDA, I believe that asking these questions is essential. By doing so, I’m hoping to highlight the gaps in service provision still experienced by many PDA families, in addition to other associated systemic barriers and concerns.
In addition to the coronial response, I intend to use the survey’s results to educate others about PDA, as well as lobby for much needed reform.
The survey will take around 40 min to 1 hour to complete, and has a cutoff date of Sunday 19th May, 11.30pm. It cannot be saved and returned to later. Consequently, I suggest completing the survey on a laptop or desktop, and keeping your browser open. That way, if you are distracted, you can return to and complete the survey at a later time.
If you choose to complete the survey, please know that your time invested is so very much appreciated. It is essential that we work together, as a community, to ensure a better and brighter future for our families and children. A special thanks to Sally Canadine, who invested much time and effort providing advice and input into the writing of the survey.'
