I’m planning to document and collate more of my advocacy on this site. Mostly so that others can use my words as a template to save them energy (though my words are never perfect nor are they the only words you can use). I’ll collect the links on one page eventually but for now they’ll live in scattered blog posts like this one.
These are my responses to PWDA’s survey on support needs tools. Sorry it took me a long time to get this published, there’s still a few days to fill in PWDA’s survey for yourself.
Survey closes Friday 31st October 5pm AEDT.
Do you have concerns about the creation of a new NDIS support needs assessment process? Please provide details.
I am concerned the assessment process will not be made by, run by etc people who understand what it is like to live with disability. For example, I’m concerned about people who are not literate in disability deciding we can just try harder, when we can’t. Or that our needs are wants, because they don’t understand what makes them a need.
Do you have concerns about the introduction of a support needs assessment tool based on the I-CAN assessment tool? (tick one) If yes, please provide details.
I am concerned the tool is too much boxing us into presets, that it has not yet been adapted and tested rigorously for use in disability context, that in particular the first users subjected to it will be getting an inappropriate assessment, that the tool will not be inclusive of fluctuating disabling chronic illnesses.
How can the NDIA ensure the new support needs assessment process is fair for people with disability? Please provide details.
The same way the NDIA need to fix nearly every aspect of their operations – ensure disability literacy is at the center of their decision making.
Do you think the new assessment process should let you continue to collect evidence and supply your own reports? (tick one) If yes, please provide details.
I am concerned about the cost of funding such reports (in my case the most knowledgeable practitioners in Australia have a policy of not writing reports, which leaves me up a particular creek without a paddle), I am concerned that even if people submit the reports, they won’t be read, won’t be respected, will be seen as biased, or will otherwise be prioritised lower in the information hierarchy when used to make decisions. Reform of the public health system needs to be included for equitable access to skilled medical professionals.
What needs to be included in the new support needs assessment process to ensure it captures the diversity of people’s support needs. Please provide details.
The problem I have with details being included is that there is a preference for evidence based support. While on the surface this is admirable, there is a problem because the government assumes evidence exists.
For marginalised and underfunded and historically neglected conditions such as MECFS, we don’t have the type of solid evidence base that other conditions have due to the pressures inflicted on the research due to a few select people psychologizing the condition.
I don’t know what the solution is, but this gap in being able to meet standards of evidence needs to be managed and acknowledged because expecting individuals to overcome systemic and historical biases is not reasonable.
Trust disabled people to know their needs when there is a gap in evidenced based suggestions, maybe?
What should the next stage of the support needs assessment process co-design look like as it is created and the assessment tool is customised for the NDIS? Please provide details. Co-design is when people work together to plan something new and can include things like testing with different people, surveys, feedback forms, interviews and focus groups.
I don’t mind what it looks like so long as it incorporates all communication needs. I do mind if they ask and ignore us, and personally feel government should be invoiced by disabled people when they ask us for this information and then ignore it, because I’m tired of the consultation being fake.
Do you have any more feedback or ideas on what would you want the support needs assessment process to look like for you? Please provide details.
The assessment needs to include people who can’t communicate, who can only do asynchronous communication, who need a support worker or AAC or anything/one else to communicate for them. It needs to include people who may only be able to speak for a few minutes a day and need days of breaks in-between questions.
Any other comments on NDIS support needs assessments?
I support reducing the financial burden of paperwork. I do not support putting people with a disability into predetermined and presently unvalidated boxes.
