In a world of constant digitizing of information if you are able bodied you can have some freedom of choice, and retain some personal power. That is, you are empowered. People with disabilities are and have been systematically disempowered and as a result, marginalised. This marginalisation further leads to disempowerment as you are often reduced to a dehumanised status often left begging to the powerful bureaucrats for having your basic needs met at a number of levels.

This is a cycle and this cycle has been commented upon over the last 40 years but still they system doesn’t seem to be listening and continue to cast people with disabilities into a cycle of disempowerment, dehumanisations and disappointment, despite the so called holy grail of the NDIA system and the Act that proports to support those with a disability. The act is only as good and those applying it. Disempowerment continues at a staggering level. 

If I am a person with a disability and needing NDIS services I have to tell my case to many people, many of those I do not know and don’t feel confident to tell of my most private vulnerabilities.  I have to do this over and over and over again in a variety of different mediums.  I have to tell the Doctor, the nurse, I have to tell the care coordinator, it goes to a plan manager, an allied health professional or 2, and then the eventual care/support team.   They will be involved and write ‘me’ up and then submit the documents to an NDIS OFFICER who will read part of it/or all of it with the copious attached reports, make assumptions they call an assessment of my ‘case’, or may short cut their reading because they are too busy and maybe make a wrong judgement necessitating a review or even it going to a tribunal such as the AAT  or an MP blessed with a cast of so many.  These documents usually have to be then referred to the plan or other care manager and so it goes on and on often in circles.

Then often I have to put a posting online looking for support staff which means that I have to bear confidential details to social media and the thousands who see my vulnerabilities 

Where does my personal and intimate information go on this journey, we know that breaches of confidentiality can occur as a result of the way records are created, stored, or transmitted, if you have a disability your most vulnerable issues can be shared and will be often exposed. You can be used as a case study or your case maybe raising so called commercial red flags to those who care only about profits 

Ordinarily, professionals should not create, update, or store records on their personal electronic devices (e.g., computers, cell phones, and flash drives) or on personal online accounts but this is never checked and regulated and may not ever be .

If a workplace is aware of and allows such off-site handling of records, then privacy safeguards, such as password protection and anonymized client identifications, should be meticulously observed; we know that this principle is not adheared to, it is documented in policy but often keeps people vulnerable and at risk. 

Records on portable devices are often opened and read in public places such as coffee shops or on public transportation, shared with and amongst colleagues who have no jurisdiction and may be a source of entertainment  at worst. 

A person who is  in the system is vulnerable to many of these things. We all at some stage will experience disability so we know many of us having lived through this.