Independent Assessments Submission
Dear Committee Members,
I present this submission for consideration in respect to the inquiry into Independent Assessments under the NDIS.
I am a father guardian and administrator of my sons affairs. I have been self- managing my sons NDIS Plan for over two years and prior to that was self- managing his Plan under the WA NDIS scheme.
My son has a rare genetic syndrome – Prader Willi Syndrome. The syndrome has a very significant impact on my sons life and results in life long cognitive and emotional development impairment, as well as a range of physical and metabolic difficulties.
In addition the syndrome results in my son feeling constantly starving, with no food satiety, and requires significant food and diet management. Despite this anagement of diet, due to low metabolism and other syndrome impacts, weight control is very difficult resulting in other health concerns including Type 2 diabetes.
These and other factors result in difficulties with behaviour management. My sons behaviour is impulsive, obsessive, inflexible, egocentric, and prone to feelings of rustration and anger outbursts. These outbursts have on occasion resulted in isphysical violence and we have had previous involvement with Police and the justice system as a result of his actions.
My son lives in an independent low rental accommodation and has a team of 3-4 carers on a rotating roster supporting him on a 24 hour basis. Due to factors such as those referred to previously, group home settings are not suitable for him, and the development of his independent living skills has been ongoing for approximately 3 years.
Whilst he no longer lives directly with me, he remains dependant on me to actively mentor him, and his support workers when required, in respect to communication techniques, emotional control and behaviour management. I live and work within close vicinity and have been required to provide active support on numerous occasions, and mediate as required in order to assist him in controlling his
Independent Assessments Submission
emotions, and assisting him to not allow his frustrations and anger to escalate.
We have tried various clinical supports including occupational therapist, dietician, pyschologist, endocrinologists, and psychiatrists. My son has a regular GP and has regular appointments with his endocrinologist and psychiatrist. (Please also arefer to attached recent report from his psychiatrist).
The best approach when caring for individuals like my son is active management of their lives, advocacy where needed, collaborative goal setting, daily support, mentorship on communication & behaviour strategies promoting optimal health outcomes; teaching essential skills fosters independence enabling self-awareness & resilience throughout growth.
A significant burden falls upon caregivers supporting loved ones facing these challenges. Self-management allows selection of appropriate workers, tailored arrangements maximizing available funding – however this responsibility impacts personal time, work capacity, family connections, leisure opportunities, crucial space for individual reflection regarding life direction separate from caregiving needs.
The reasons I am submitting this submission are as follows:
What my son requires—and what those providing such care need—is certainty concerning financial assistance: an accessible system avoiding uncertainty or added stress.
Regardless of structure/development, implementing independent assessments for people living long term conditions creates unnecessary anxiety about ongoing resources.
I harbor concerns over the expertise assessing complex genetic syndromes effectively.
a snapshot assessment may very well give a completely wrong outcome
My son reacts negatively towards unfamiliar persons reviewing him - discussing matters would induce undue distress rendering any evaluation meaningless.
systems designed to assist disabled and disadvantaged populations should not generate further insecurity or tension — implications must be avoided. For aforementioned causes, introducing Independent Assessments into the scheme will do just that..
Independent Assessments
Submission 20
There are concerns about individual dignity. Having others that may have technical skills but have no knowledge of the person or his life, reviewing and assessing them is an intrusion into their lives. Combining this with a probable lack of an in-depth understanding of complex syndromes would also potentially trigger negative feelings of self-worth and should not in any way be substantiated.
Should it be determined that such assessments be undertaken then it is submitted that those with lifelong disabilities, that need to be managed for the remainder of their lives should be exempt from such assessments. Prader Willi Syndrome results in such an overarching range of lifelike long difficulties that allocating resources to undertake assessments on those with such disabilities would serve no purpose, and would be a negative experience and intrusion on the person involved, as well as creating undue stress on those that have significant stress in their lives already.
I thank you for the opportunity to present this submission and sincerely hope that consideration is given to the matters raised.
Kind Regards