Submission re the Changes to the 2026 NDIS Bill:
I applaud the initial designers of the scheme and have expressed concern in previous communication with various Federal and State Agencies re the lack of clear scope, standards based assessments (which would allow for personalised journeys). The complexity of the scheme for Carers and PwD who are able to navigate the system should have always been at the centre of the design - before the implementation. Yes we have a flawed implementation and ridiculous scope creep. NDIS was designed for a lifetime of care - where are the LIFE JOURNEY MODELS AND STANDARDS???
I have proposed clinically-defined, standards-based models of care (based on standards-based functional capacity assessment) which already exist in world health models which should have been established before the plans were rolled out.
I proposed using a model like extending the “blue-book” which is recognised nationally and widely accepted by every mum and gp for the first year or two of an infants life for the next generation of PwD needing supports - and early interventions programs should still retain the data for future life journey modelling, costing, solution deign and outcome measurement. Yes we can do this.
What we have to do with the existing NDIS folks is publish the standards, get FCAs, establish goals but now that you’ve cancelled state services you are going to have to suck it up and work out what a safe and ethical transition and sharing of service delivery models is going to look like. You had the NDDA - but you can’t measure anything if you haven’t established baselines and standards from which to measure costs and return on outcomes. Also there is greater need for data segmentation (clinically defined with standards).
For the 4.5 million people estimated to already have forms of disability - life journey models - once defined would have allowed the acceptance that we start with standards so that interventions and outcomes can actually be measured with equity and transparency. Standards-based clinically defined assessments were always a MUST without them we have the runaway train we have today.
The M2M Transformation model was submitted to Cabinet by Minister Ruston and has been shared with numerous Ministers and executives for the last 10 years. It was even shared with the Royal Commission. As an executive who has done national and global business transformation projects for corporates and governments (and a mum of triplets - one with cerebral palsy and intellectual disability) - now 23 - I have a systemic understanding of how siloed approaches to continuum journeys are fraught with duplication, inefficiency, risks, complexity, uneccessary costs. In a clever country of less than 30 million people who are multicultural and technically savvy we STILL HAVE the opportunity to create one of the world’s best practice disability service delivery solutions but we need to start with standardised data collection, real people can then
measure their capacity against those standards (which must ACTUALLY BE ASSESSED), interventions, services and supports can then be identified to approximate quality of life standards (or individual goals) and then services /supports be selected to achieve those targets/goals.
As opposed to a bucket of funds in NDIS (which the entire population ran to the light because there was nowhere else to go) we should have been working with Health to define those standards, estimate the costs of delivery of interventions and supports, communicate them with the population transparently and run with this for the existing population while we were developing more defined and accurate models for the younger and upcoming generations. The integrity of this system comes through actual validation of those standards and the achievement of outcomes.
My M2M proposal defined life journey models across the 8 domains and government/service providers were to create the roadmaps. Instead we have planners, intermediaries, support coordinators, random assessments with no standards so how are we ever to measure outcomes and effectiveness of the programs. And worse with two different buckets for PwD versus aged care (with people on the same life journey) with the same end of life we make the 3,000,000 unpaid carers and millions of other working carers waste PRECIOUS TIME and MONEY propping up systems that have no relation to the life journey of the people we are caring for.
Tighter eligibility - well if the NDIS had actually defined these standards based on WW and clinically accepted definitions and standards before it was launched we could actually have independent and accurate assessments. Where are these templates and standards. My last OT assessment which did NOT involve actual assessment seemed to trigger a challenge to my daughter’s eligibility. What she (a young woman with CP and ID) said are not quite the reality of what she can achieve YET!!! But I believe in giving her targets and my daughter answered the OT with what she thinks the OT wanted to hear and I have not taught my daughter to highlight her disabilities!!!! Her goal is to be independant - she is 23 (not quite there yet and at a crucial stage of independence) and her IQ is 69 which puts her competence between 12-14 give or take. She needs more experience and she needs some supports and guardrails. I spent hundreds of hours and $125k on early interventions for my daughter and gave up a career (and have lost $3million in earnings and super). Having triplets I had a built in life journey model with milestones, interventions and measured outcomes and the clinically roadmap DID NOT EXIST and was pretty unpaved at best. I developed my own based on her triplet sisters. Define the standards, I have already proved that these costly Capacity Assessments are not being done correctly and that needs to be fixed. This is OK for the upcoming generation (and we have a lot of learning to do) but throwing existing people off supports (like robodebt with centrelink) MUST be handled with much more care snd precision. My daughter has mild ataxic CP and mild intellectual disability, has impaired
executive functioning and poor working memory so cannot plan, tell time or manage numbers (money). If we were able to have some ai-enabled supports around her defined disabilities we could reduce her support needs but it still needs periodic oversight as she transitions from one stage to another. We can do this smarter if we create the standards and the framework I called for in my M2M submission. Instead the NDIS and it’s complexity has completed destroyed my confidence and overwhelmed me - her carer. I had to navigate and create roadmaps through school which left her in the back of a class room colouring in, navigate sports, I took her to lindamoodbell at $100 an hour which I paid for personally and her literacy went from .05% to the 25th% and her numeracy from .02% to 1% with the same level of intervention- with NO HELP FROM THE DOE. She was excluded fro sport - she then came 2nd in state in swimming after hours of my personal intervention. She did Mainstream school (with lots of help from mum) and the school changed her to lifeskills during covid during HSC year. She languished in Learning Support and did not make a single friend in High School - mmmm. Two years at SLES - taught her very little to get a job - mum taught her technology and she has gone from strength to strength with Chat GPT. She is working ain a corporate wnow in open employment with no advocacy -(even a once a month meeting would be better and tracking her well being and continuous learning, development plans - and what if she loses her job) that is a huge risk which I am called out to government NOW.
Tell people what you are doing - publish the standards - you are frightening people and causing HARM!!!!
Ministerial Power of Funding - remember robodebt - needs like anything else to be subject to a board at which government has a set but does not OWN the TABLE. Understand changes in funding may need to be made across the board if standards or there are changes due to true determination s of outcomes but standards are standards - same as in schools, hospitals - they need to be applied to the disability and aged care sector. Let’s just change social security, PBS, school funding, retirement programs, gst, cgt…without legislative approval - the human right commission might just call this discriminatory ministerial powers and it would not stand up.
Manadatory Registration & Market Control: establish service level agreements and standards, define the supports needed, measure the outcomes and validate they have been achieved and track the costs of a true open market (without collusion or layers of government bureacracy) and you will take $billions out of the costs. High care for high care supports must have accrediations, mild to moderate - less rigid but measured on outcomes - Again if we had ai-enabled life journey models for PwD with their personalised goals mapped against the government service delivery roadmaps (deduping silos and streamlining systems) we could actually have visibility of the outcomes. And if the targets are established and independantly verified - why does
government care who is delivering the services - think about a carer economy - ie the unpaid carers who are excluded from this marketplace. Who don’t need $70 an hour for goodness sakes!!!! And who get $0 on weekend versus the ridiculous amounts being chatged right now.
Reduced Claim Windows - providers are businesses go to it - self managers are unpaid carers - let’s make the system easier - your categories broke me - NDIS systems made it harder to track expenditure and outcomes. How many times has PACE been down this year???? Improve the technology - I thought the phone app was pretty bloody good and made submitting payments much easier. I think we could have done this MUCH smarter. Look at Bpay - govt should have standardised on a platform and made this secure and bulletproof. Also, if a participants are NOT being used or claimed - there’s a reason. FIND OUT - you have 300,000+ staff - what are they doing???
Automated & Systemized Decisions: Seriously!!!!! That’s ok for a house loan - we are no way even nearly there yet - we have years of data to collect and personalised profiles to create before we can do preliminary automated recommendations. This is a human condition - would you have an automated decision on your surgery - then why would you have an automated decision on your personal care???? Again robodebt - there are better places to save costs than on vulnerable people’s lifestyles and supports.
I trusted government to aggragate and secure our data - data is sovereign - and must be protected as such. Establish the standards, allow people to establish their personalised life journeys models (from some templates) and government builds the roadmaps, roads and maintains the policy and structural integrity for generations to come. There is a way the question is there a will?
I am submitting a proposal I created starting in 2009, submitted to NDIA in 2016 and finally submitted to cabinet in 2020. I would welcome the opportunity to share this with the committee. I have applied for over 100 roles within the NDIS service delivery community since 2020 and not even made a short list because of agism - yet I lost 10 years as an unpaid carer.
This is NOT ok. I’ve worked for IBM, Accenture, Implemented WOG solutions for NSW Government, actually worked for Carer Gateway (80 hours a week for $80k), and have navigated a groundbreaking journey for my daughter who they said might not walk or talk - she now works for a global corporate. I stepped up as a chair for special olympics and have supported hundreds of parents broken by this journey. I myself have gone down the rabbit hole but carers can never quit - we just don’t get paid and we pick up the slack while others get paid. NDIS has also impacted families who now think PwD are being cared for by NDIS and going on expensive holidays. My husband and I have not been away together without kids for over 20 years. And the babysitting pool is now
filled with hireup baby sitters who want $70 an hour instead of $20. It is a mess but it is fixable.
I personally developed a cohort specific community support group (M2M - mum 2 mum) but due to security for PwID reached out to government to establish more guardrails on this platform which could have been rolled out to the 500+ LGAs BUT as now PwD had money attached to them which is attracting predators and very bad actors. M2M has a public front end for a person to apply to join a community. They are vetted and then they can be invited to participate in a closed support group of carers. I did the math for my daughter. There are 450,000 PwID in Australia, about 10% have an IQ between 65-75 and 10% are between 18-30 - thats 45,000 and in the Upper North Shore where I live that’s 450 families that have young people with PwID who could actually support each other and find long term solutions with shared resources. This isn’t for every cohort but I can tell you our Peeps and Carers all want the same things for their family members. HOW DO WE IND EACH OTHER SAFELY???
I welcome the opportunity to present to the committee when they are serious about inviting input without asking unpaid carers to transfer their IP to the government without being paid for it.