Independent Assessment Enquiry

25 March 2021

To Whom It May Concern

RE: Independent Assessment Enquiry

I am the mother of , a 24 year old young lady who suffers from Cornelia De Lange Syndrome and rapidly progressing severe scoliosis. She has privately engaged support workers through her NDS funding. She lives at home with me . She is non-verbal, has difficulty in doing the usual self-care activities we all do automatically such as feeding, drinking, bathing, toileting and can no longer walk very far due to her scoliosis and stomach issues associated with her syndrome. Her life span is being shortened considerably because of the ramifications of her condition.

I am a panel member of a Carers Advisory Group (disability) here in Queensland and so, have an opportunity to hear what’s happening in the disability sector from a broad number of inputs.

I write not as an organisation but from a personal perspective, having observed the system that supports people with a disability for over two decades.

My input is highlighted below in bold font as answer to the terms of reference I consider would have impact.

As part of the committee’s role to inquire into the implementation, performance and governance of the National Disability Insurance Scheme (NDIS), the committee will inquire into and report on independent assessments, with particular reference to: - The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS; - The impact of similar policies in other jurisdictions and in the provision of other government services; - It has already been recognised that therapists of any type are leaving the elderly sector in their droves because they can charge a higher price to an NDS client than they can to an elderly client. There aren’t enough therapists for all of us now – let alone this policy encouraging anyone and everyone who is a qualified therapist to be further drawn into service the NDS sector - The human and financial resources needed to effectively implement independent assessments;

d.

the independence, qualifications, training, expertise and quality assurance of assessors;

a. I already avoid therapists who have never dealt with intellectual disability or worked in the disability sector as a matter of principle. They often have a predisposed idea of what they think matters for a person with a disability (or the family for that matter) and our experience and advice as to what our family member’s history is in coping with anything is often ignored. Even worse is when it’s explained to us rather patronisingly what we need to know according to their completed studies.

b. The thought of dealing with paternalistic attitude from someone who has no knowledge or experience about us, who has the power to make decisions based on their personal opinion as a ‘specialist’ fills me with dread. Don’t expect them to be treated with respect if we can’t get any from them.

c. The current system to use reports from the professionals who are already part of our lives and know our history well should be continued. Independent assessors will have no such personal interaction history available to them when making a decision - this could be detrimental to all of us effected.

e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding; f. the implications of independent assessments for access to and eligibility for the NDIS;g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;

a. This whole announcement seems to be adding an unnecessary layer in the process of plan application and annual review. There is already the NDIA and its affiliates that deal with application and annual review for NDIS funding which can at times become a Chinese whispers situation for information. This is incredibly frustrating for the NDIS participant or their family member managing their lives. Don’t complicate it further!! h. the circumstances in which a person may not be required to complete an independent assessment;

a. There are many NDIS participants that will barely progress in anything, particularly the intellectually challenged. Although the constant need to demonstrate goals and goal achievements is good in theory, for adults with a disability not much is going to change as they age. It is an unrealistic expectation already that the NDIA wants to see. If my experience with some therapists with my daughter (who is 24) is anything to go by, failure to progress or reach a goal can bring on difficult dynamics between an ego-fed therapist and the participant or their families. The power of an independent assessor is too great. i. opportunities to review or challenge the outcomes of independent assessments;

a. Consider the number of appeals that will no doubt increase work for an already overworked department such as the NDIA b. Consider bringing in an advocacy sector that can be of assistance to people without the power to advocate for themselves (which, is most NDIA clients!!!!!) c. Consider bringing in mediators as a third party funded by the NDIA for disputes

• j. the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds;
• k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability; and
• l. any other related matters