Independent Assessments
Submission 351
I am a participant of the NDIS and also in the parent of a 12 year old participant. I have several personal concerns with the proposed changes to the NDis and the impact it will have on my son, myself and our family. My son and I both have a rare genetic couldition that affects all systems of our body, including the bowel, the eyes, joints, the skin and the heart. My son was also born very premature and has a cognitive disability from this. I on the other hand, have an autoimmune disease (rheumatoid arthritis) which, after 15 years has caused significant physical disability. I use a manual wheelchair when required but am unable to use this ow as my condition has affected my hands and shoulders as well and I am unable to self propel. I am awaiting a power chair from the NDIS.
I would like to address several areas of the Independent Assessments.
1. Matters relating to h. The circumstances in which a person may not be required to complete an independent assessment.
It took me 37 years and many, many specialists in three states to get a diagnosis of my genetic couldition. Over that time I have seen many doctors and allied health professionals who have dismissed your concerns. This led to a diagnosis of post-traumatic stress disorder brought on by medical gas lighiting. It is taken a few years to find the right set of allied health professionals who understand my diagnosis and are able to treat me to stabilise my function so that it does not decline further. unfortunately, there is no cure and both conditions are degenerative. Much of the trauma was caused bby being not believed, not asked before being treated, and having other people discuss my condition without me present without my consent. The proposed independent assessments will cause me to continue to relive the trauma I have experienced over my lifetime, of which I am working very hard with a psychologist to work through these assessments. Not only will cause harm but will set back any progress that I have made.
What will happen to those of us who are adversely affected by the independent assessment process and how can we get an exemption?
2. Matters relating to d. The independence, qualifications, training, expertise and quality assurance of assessors
My other concern is the lack of experience and understanding the allied health professionals may have of my condition and my son’s condition as they are rare and require specialised knowledge. This can lead to a lack of understanding of the impact of these conditions on our daily lives.
The team of allied health professional we now have around us have been with us for over two years, some for longer, and are best placed to undergo assessments around our function over a series of appointments. Our team of allied pofessionals cannot all present bias and all independently come up with the same results of daily function. They are also able to see our function in many settings, including observing us at work, school, home, and in the clinic. This is simply not possible with a less than one hour assessment by an independent assessor.
My son presents as a well spoken, intelligent, happy child but like many with disabilities, masks his feelings and his true impairments and his inability to cope while with strangers. This will be a problem with the independent assessments as the very short time they spend with my son will not show his true function in all environments.
HHow can one person who has never met us make an assessment on our complex conditions in such a short period of time? If it took 37 years and many medical professionals to gain a diagnosis and a
Independent Assessments
Submission 361
plan to reduce further loss of function, how can one allied health professional possibly be able to make a thorough assessment of complex, rare disabilities in under four hours.
Matters Relating To e. The Appropriateness Of Assessment Tools & k. Appropriate Assessments For People With Disability Types
The independent assessments using tools developed for those with intellectual disabilities (Vineland) to assess those like myself with a physical disability is inappropriate and not how the assessment was intended. Requesting someone to speak on my behalf without me present is not acceptable and will add to the trauma I have experienced over my lifetime. People without a disability are not infantilised by having to have someone answer questions about them when they go to the doctor. Independent Assessments will cause me to continue to re-live trauma of which I am working very hard with a psychologist to work through. Not only will they cause harm but will set back any progress that I have made.
The independent assessments will be assessed on your “primary disability”. This causes huge problems for those with several disabilities, particularly when one is physical and one is cognitive or psychosocial. How can your function be determined when one part of your disability is not being assessed? How can the NDIA use
Independent Assessments
Submission 351
Giving out our budget in small portions will also have a huge impact on the way we use our budget to provide appropriate supports at a time when we require them. Many of us who self-manage our budgets plan for times when we may need extra supports (such as holidays, after hospital admissions and times when conditions flare). By portioning out and then removing unused monies, we then miss out on vital supports at the time we require them. This also removes our choice and control.
The NDIA has requested disabled people respond to their proposed change to legislation but have not engaged in real consultation. We have not been given a chance to come to the table and discuss the issues with the NDIS and how they may be addressed. We have simply been told that these things will be taking place and then asked how the NDIS should implement them. This is not consultation. The NDIA recently released a response to their consultation questions and summarized the answers, which overwhelmingly do not support these changes, but responded by repeating that they will still go ahead. This shows that they haven’t listened to disabled people, their carers, and allied health professionals.
Disabled people have the right to help determine the way the NDIA works. This is the original intention.
these proposed changes to the NDIS will have a huge impact on individuals with disabilities. It will pact carers and families and again place more pressure on the most vulnerable members of society.
i urge the Committee to look closely at the damage these changes will make to our community. I urge you give us voice at the table to determine our future NDIS.
Regards,