Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100 Parliament House Canberra ACT 2600 NDIS.Sen@aph.gov.au

25th March 2021

to whom it may concern,

I am writing this letter for the Senate inquiry for NDIS Independent Assessments of some of our most vulnerable residents living within Western Australia.

So you say - An independent assessment is an assessment of a person’s functional capacity, which will be used to inform decisions about eligibility for the NDIS and about funding in a participant’s plan. How can someone who is perhaps from Aged Care or an Employment Service who are not even trained in a specialty that my child requires for his complex needs, able to assess his requirements and how complex he is? He even baffles his current therapy team!

The appropriateness of independent assessments for people with particular disability types, including psychosocial disability - How can you make a 10 year old child sit in a room with a stranger for 3 hours with their carer and answer all the questions needed to make an informed decision on my son’s many diagnosis and his needs? I know for one, my child would display the flight mode and try to escape the room, hide under the table, start pulling me and could potentially even get into the fight mode where he will start hurting me.

So we have the meeting with this supposed assessor who’s has my son’s life in their hands, my son will be hiding under A table, not speaking to anyone else but me, I will be stopping him from trying to escape and/or worst he would hurt me as I am stopping him from leaving all while the assessor is asking me, the CARER, the questions which I need to answer the best and most detailed I can whilst trying to keep my son at bay. Tell me how that is fair to either of us? My son’s fate is in their hands!! Who knows if these questions in the test/questionnaires are even relevant to his conditions and needs OR even relevant to the goals set out for him to succeed in life?

My son is only 10 with Genetic Duplications and Deletions, Level 2 Autism Spectrum Disorder, Generalised Anxiety with Co-Morbid Selective Mutism, Genetic Nocturnal seizures. Server Sensory seeking and avoidance disorder and an Intellectual Disability (intellectual developmental disorder) – mild.

Being Select Mute means you don’t speak in a particular social setting, for my son that is talk around adults who he does not know very well. To give you an example, we did weekly sessions with a Therapist in the house, it took him 16 weeks to have a proper conversation. 8 weeks just to verbalise a yes or no response rather than just gesturing. Although he needed the therapy, the aftermath of him containing the anxiety would be like a coke can exploding after the therapist had left and he would leave a trail of destruction and potentially tears

• From his mother or sister who he has taken out his feelings on due to the inability to express his built up emotions.

With my son’s current plan coming up for renewal in the next few months, we currently access weekly sessions with

Occupational Therapy – In School OR Clinic in school holidays weekly – This is required to support my son to develop his sensory regulation abilities, social skills, ability to manage his anxiety, emotional regulation skills, fine and gross motor tasks, enhancing his independence within activities of daily living, and for education and support to key stakeholders supporting my son to further understand his needs.

Speech Therapy - – In School OR Clinic in school holidays weekly - to provide assistance with expressive and receptive language abilities. Also working on input from a Speech therapist to target social skills to improve my son the ability to create and maintain successful relationships.

And

Psychologist – Weekly at Clinic - psychologist on a fortnightly basis to provide assistance to addressing mental health and well-being. My son displays increasing anxiety in certain social settings and a decreased ability to be able to manage this on a daily basis. He displays depression, decreased state of self-worth and decreased self-confidence which greatly impacts his abilities to participate in meaningful occupations on a daily basis. Whilst focusing on behaviours of concern and assisting those surrounding my son to understand and support his needs.

Reports from the above therapists as well as the Neuropsychologist and our paediatrician is ESSENTIAL to make financial decisions. They provide excellent, thorough, accurate and factual finding for NDIS at each review period, and a detailed discussion at the review meeting with the LAC makes use of the facts they provide.

All of the above therapists and specialists are deeply invested in our son’s welfare, lifelong learning and development. Each one of the providers, provide hours of attention, skill, guidance and information into ensuring my son gets the assistance and strategies he will need in his education, in the community and beyond. Their work guarantees his growth in skills and satisfaction and contribute enormously to his happiness.

Our therapy teams take hours of writing reports, assessing their clients for it not even to be taken into account by an Independent assessor? As a result, it will be difficult to capture the individual complexity or build a comprehensive and accurate picture of my son’s needs and circumstances. My son has many complex diagnosis, how does someone who has only just met him able to completely and accurately understand the functional abilities of a child with “invisible” or complex disabilities?

With the Independent Assessments coming in, it has been noted that us as carers will not be able to challenge or appeal the results from this assessment and only if we ask, will we even be given a copy of the full assessment report unless we apply to see it.

Where is the transparency in that? How is that making it fairer across the board? Not every 2 people even though may have similar diagnosis are ever going to need the exact same therapy, g oals and assistance.

I am not the only person who is worried about how the Independent Assessments may affect my family, I can guarantee you that almost all participants of NDIS whether it is the person with a disability OR the carer, has a story as complex as this, YET someone who has never met our son is going to meet him in less time than it has taken to write this letter, They and ONLY they, apparently will make a report on the basis of which the NDIS will fund him.

PLEASE listen to what I have said in this letter. Please listen to the peak disability organisations. PLEASE listen to NDIS Participants and those who are trying to become participants.

P lease listen to those who can’t speak for themselves, or write letters or send emails.

T here have been many discussions and comments about the upcoming Independent assessments in WA which speak of utter despair, even suicide, as a result of this ridiculous and utterly useless idea. Not to mention the incredible waste of taxpayers’ money.

If “Independent Assessments” go ahead, it will cost this government. The disability community is lark and its members and advocates will not roll over. We will fight for our children and our loved ones. We will not be silenced. That is a lot of votes!

Please re-think the Independent assessments roll out. It is a pathway to disaster.

Yours Sincerely