Joint Standing Committee on the National Disability Insurance Scheme
NDIS Independent Assessments
I write to you today to oppose the proposed Independent Assessments to be carried out for participants of the NDIS.
I am lodging this submission from the perspective of a parent whose son is an NDIS participant.
My main concerns are:
- That the decision-making process will be centred around a diagnosis (which can be incredibly broad) rather than the individual and their needs and goals.
- That parents/carers of participants will not be adequately supported during this process and therefor placed under even more stress.
- That the proposed assessment tools do not work for every individual.
- Independent assessments oppose the key principles the NDIS was founded on.
My beautiful son is now 13 and has the following diagnosis: Autism (level 3), intellectual impairment, sensory processing disorder, anxiety, obsessive compulsive disorder, dyspraxia, apraxia, epilepsy and a complex communication disorder.
I prefer not to introduce him this way as there is far more to than this long list of ‘disorders’. I haven’t had to list these for some time as we work with a wonderful team of therapists some of which have been with us since he was only 3. His team understand the whole picture which is my son and our family dynamic. When we require a new therapist or health professional It is these therapists and their reports full of knowledge about that I rely on to help me educate the new therapist or health care professional on my son’s needs.
When we first applied for the NDIS a few years ago I was very anxious about the application process. I was lucky enough to have our therapists on hand to write up reports and support me through it. Once we had our goals and were granted our first plan, I felt relieved and focused on helping him reach his goals.
The point I am trying to make is that you cannot understand my son and his
needs in under 3 hours. Not even 3 days. His needs are extremely individual and complex. As a Mother and full-time career, it is my responsibility to ensure his needs are met. I do not think I could honestly cover everything in one appointment, particularly if my son is upset. This proposed model of Independent assessments will just cause uneccesary stress on all parties.
My son is non-verbal and has a complex communication disorder as well as
apraxia therefor he cannot answer a questionnaire about himself let alone engage with and respond to a stranger conducting some sort of standardized assessment tool. It’s actually comical to think this could be a success. You cannot measure an individual’s needs from one standardised assessment tool that has been designed for individuals who are verbal!
When my son was 5 our psychologist came to our home to conduct his first
cognitive assessment. She preferred to do it in our home where he was more comfortable as he was so anxious in her office, she couldn’t get him to engage with her. It took 3 sessions to complete the VINELAND-3 and from memory he didn’t complete it in full as he was non-verbal so most of it was redundant. When the time came to apply for NDIS funding the same psychologist wrote her report with recommendations based on 18 months’ worth of interactions with my son both at our home and in her clinic. These processes take time in order to determine a person’s needs.
I cannot imagine having to sit with a stranger (presumably with my son sitting
with me) and explain our situation and the support needs again and again. It is exhausting (although unimaginably rewarding) being a special needs parent. We try to keep our language positive and focus on the good things. We focus on the progress and gains he is making towards his goals every year. It is draining beyond belief to have to go over in detail his deficits.
- Not to mention how potentially damaging it is to his mental health to hear them. I do not want to explain that he is still in nappies at night when he is beside me, he is 13 and I presume he is understanding what I am saying even if he is non-verbal. His therapists that see him each week already know that! He deserves to be treated with dignity and respect.
The National Disability Insurance Scheme Principles state that:
“People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.”
“People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports.”
“People with disability should be supported to receive reasonable and necessary supports, including early intervention supports. “
Source: National Disability Insurance Scheme Act 2013
http://www.disabilitycareaustralia.gov.au/document/151
I strongly fear that these proposed changes are not only going to limit participants progress and quality of life but potentially have major repercussions in the areas of mental health for both participants and their families. I urge you to oppose the implementation of Independent Assessments.
Kind Regards,