Dear Committee Members,
I present this submission for consideration in respect to the NDIS Joint Standing Committee’s Inquiry into Independent Assessments.
I live in Queensland and have been an NDis participant since April 2020. I am a single-parent and primary carer to two teenage daughters with disabilities, one of whom is also an Ndis participant.
Have a complex presentation of multiple disabilities, the most significant of which include Myopathy, Autism Spectrum Disorder, Attention-Deficit Hyperactivity Disorder, and Fibromyalgia. My specific genetic myopathy is an adult-onset degenerative type with a relatively unknown prognosis due to its extreme rarity (there are currently less than 500 identified cases worldwide). The rarity of my genetic condition creates an ongoing challenge for my care team, as none of them have dealt with this specific condition previously.
Through years of trial and error, I have now established a care team comprising of highly skilled and dedicated medical and allied health professionals. These clinicians have been working with me for many years, and together we continue to learn more about my condition and its fluctuating impact on my functional capacity as it progresses over time.
My physical disability causes muscular weakness, pain and fatigue. The level of weakness fluctuates day-by-day and hour-by-hour depending on the physical and mental stress placed on my body at any given time. I rely heavily on both disability support workers and assistive technology to complete activities of daily living and to pace myself to best utilise my limited daily energy reserves. I also rely heavily on the services of my Allied Health Team to maintain muscle, slow down my decline in strength and range of movement, and to minimise psychological stressors.
There are many facets of the Independent Assessments that I am concerned about and it is causing me significant psychological distress to think that the Federal Government is
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planning to base my future support funding on the results of a 3 hour interview with an unknown and likely inexperienced allied health professional, that I can almost 100% guarantee will have never even heard of my specific genetic condition, let alone be able to fully comprehend the full extent of functional impact my complex multiple disabilities cause me.
during the last few years prior to becoming an NDIS participant my quality of life was extremely poor. Most days I was completely bedridden, unable to walk, shower or cook myself any meals. And as a single mother I was failing to support my children adequately due to the significant functional impact of my disability. NDIS funding has given me the supports I need to increase my quality of life to an acceptable level and to increase my ability to care for my children. My support needs can fluctuate from day to day due to the episodic nature of my disabilities.
The daily variability in my functional capacity means the tests proposed to be included in the Independent Assessment will not allow for accurate measurement of the functional impact of my disabilities. To require participants to provide a definitive answer to subjective questions will inevitably lead to distortions in funding outcomes. Some participants will end up underfunded and some overfunded.
in order to ensure i don’t end up underfunded, i will need to answer every question as if it is my worst day, rather than providing subjective and conditional answers. As my WORST day means that I am completely bedridden, unable to walk, shower, dress, speak, or eat and drink independently, my answers will reflect this. They will not reflect that on my best days I can walk up to 500mt independently, complete most of my own personal self-care, some domestic tasks, communicate clearly, eat and drink independently and access the community. Therefore, I will likely end up being over funded. And I am sure that many other participants will feel they have no other choice but to answer questions based on their worst days too.
on the other hand, my daughter who is an NDIS participant with level 3 autism spectrum disorder, mild intellectual disability, communication disorder and psycho-social disability is
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llikely to answer questions based on her BEST days and mask the true extent of functional deficits. Therefore, I am concerned that the Independent Assessment process will leave her significantly underfunded and put her at grave risk of imminent harm.
This is not a system that will lead to more equitable funding outcomes for all participants. It is an insult to participants, their families and carers, and to the medical and allied health ofessionals that support us.
I am concerned that this will place many participants, including myself and my daughter at imminent risk of harm. This harm will be caused by both the Independent Assessment process itself, and the resulting funding outcomes it creates. My daughter has significant psychosocial disability and the process of dealing with unknown allied health professionals who will be asking her some highly personal questions (such as those on the WHODAS 2.0), is likely to make her suicidal.
Is the NDIA going to take full liability for the potential loss of lives and future trauma inpacts that imposing this mandatory process on us will create? We are being forced to comply with an unfair process that has been marketed as being “independent” but is the complete opposite of that. And if we don’t comply, we will have the funding we need to live adquate lives taken off of us. In 2020, how is that a fair and just proposal that meets our basic human rights? It is not.
I thank you for the opportunity to present this submission and sincerely hope that consideration is given to the matters raised.
Kind Regards,
31 March 2021