Independent Assessments Submission
to Whom It May Concern,
I am making a submission regarding Independent Assessments in order to provide a personal view of the upcoming situation.
Independent Assessments (IA’s), will, at best, ensure my family’s NDIS funding is no longer an accurate representation of our needs, and at worst, traumatise my children, and re-traumatize myself. And the issues that we face, will be faced by many many many others!
Have two children with multiple disabilities, including physical disability, Autism, and various other functional disabilities. Have a physical disability, have Autism, and a plethora of other functional disabilities. One of my children and myself both use wheelchairs.
Thinking of IA’s regarding my husband, who has a disability but has no reports to use with an application for the NDIS as we can’t afford it (however has been confirmed by specialists), it seems like a good idea on the surface to enter the scheme with no cost to ourselves. That initial diagnosis (on paper), and reports, and our lack of the ability to afford them, are the reason that my husband has not been able to access NDIS.
However, the deeper issues regarding IA’s will affect him also, and quite frankly – it’s not worth it!!!!
those Deeper issues are many, and complicated, however it can be summed up with this - our lives, and our needs regarding our disabilities, are far more complicated than can be measured in any kind of assessment such as those used in the IA’s.
My home requires wheelchair access, which sounds simple enough until you consider that it also needs to be accessible for two wheelchair users at the same time (it’s not accessible for either btw, which means my 15-year-old son and myself are both constantly walking on dislocated hips). IA’s are not going to be measuring this at all, let alone in context of a family situation (as opposed to two or three individuals sharing a home).
Other things that affect our lives as a family have also been an issue for the NDIA - such as the fact that my children’s funding initially did not consider the fact that both their parents were disabled, and not able to participate in “parental responsibility” duties. IA’s will further exacerbate this problem by not allowing this kind of issue to be carefully considered at all!
The disability that my children and I share (EDS), is a complicated disability, and the questions provided in the assessments being used in the IA’s are not appropriate, as the disability is fluid – it changes every day. There is no way to accurately state
Independent Assessments
Submission 257 an reason to continually concern him about issues he can’t change or fix. Any interview is going to be incomplete at best, and completely inaccurate at worst.
And having us do activities around the home is just plain offensive. And intrusive. Especially when doing so will risk dislocating my joints (and the joints of my children).
Last (for this submission at least – my list of concerns goes far longer!), privacy is a huge concern for me as well. The NDIA will have control of the information gathered about us during these assessments, a - nd as far as we are aware, there are little privacy protections in place regarding this information. If my child wants to apply for the army later, will these assessments, over which we have no control, including to correct any information which may be incorrect, be able to be accessed by intake teams??? Our health care professionals can only release our information when we give our written permission. The same cannot be said for government held information.
The way that assessments are done has to be individualised. Anything less is inhumane. And our disability community has had quite enough of being treated as less than the rest of the community.
Put it this way – if IA’s go ahead, there is every chance that my funding will no longer allow me to attend university full time and may result in my children being put into foster care. We have already faced these dilemmas in the past due to inadequate support funding, and I would really like to NOT have to face them again in the future! These issues are common across people with disabilities—not only does inadequate funding mean we cannot participate in social and community activities; however also affects our ability to participate in study and employment opportunities. Opportunities that are often hard enough for us to participate in, even with adequate funding.
Thank you for your time and attention in reading my submission.