The planned introduction of independent assessments for the National Disability Insurance Scheme (NDIS) will further disadvantage those with complex and not obviously manifest disabilities. For marginalised people with disabilities there are questions.
Some will think I’m obsessed with welfare. I am. As a medico I see those who survive on these payments, and others without. As I wrote in Pearls and Irritations 29th November, the barriers to the Disability Support Pension squeeze too many citizens, like toothpaste, to a life on the street and under the bridges. They are diminished and demeaned by the application procedures, proof of need and the obligations demanded of them.
When not in a mental institution, Josh (not his real name) hovers in shadowed corners. His behaviour and mental state were more than his refugee family could handle; he became a deeply disturbed rootless wanderer in inner Sydney. There, prey to psychotic delusion and ever-present exploitation, he lived in a drug-induced haze.
Over time, social workers at the Exodus foundation and the local Community Mental Health Team, managed to get Josh into temporary accommodation and treatment. He was stabilised on an intense regimen of directly supervised antipsychotic medications. Drug use and episodes of intoxication declined markedly and he now had some support through the National Disability Insurance Scheme (NDIS).
At his recent clinic visit, his clothes were clean and he engaged surprisingly well considering his coexisting mental and substance use disorders. He produced a letter from the CEO of the National Disability Insurance Agency (NDIA), which said, inter-alia:
“In the last few months, you have probably heard we are introducing independent assessments to the NDIS. You may have heard about Independent assessments from me, the media, social media, friends, family, or the community.
An independent assessment is made by an independent qualified health professional who uses a set of standardised and Internationally recognised tools. This will create a complete picture of how you manage tasks and activities in your everyday life.
We know this is a big change for everyone We know that many of our participants, might be feeling worried about how this could change their NDIS access and supports. And we also know many of our applicants and participants haven’t been through this kind of assessment before — especially with someone they don’t know.
We’ve already learned a lot in our first two independent assessments pilots. We want to continue building our understanding of the experience for participants, so we’re inviting you to participate in our pilot by offering you a free independent assessment.”
The letter flags major changes to the NDIS.
The NDIS is 10 years old. It started with enthusiasm as an insurance model aiming to be a modern professional system, to replace the myriad of responses organised by concerned parents and citizens. It is a statutory, independent, Canberra-based body struggling to deliver on its promise of person-centred decision-making – for the person’s goals, their independence, day-to-day living skills, social participation and employment.
The NDIS plan
The NDIS plans to rely in the future on independent assessments of a person’s need for support. Two pilot projects of independent assessments have already been conducted, and now, a third, in which Josh has been invited to participate, is starting.
The assessors will not be those who interact socially and professionally on a day-to-day basis with the person. They will be from the disciplines of – physiotherapy, occupational therapy, psychology, social work and rehabilitation counselling. All qualified in aspects of disability, but none will know the person or have observed their function and coping over time. They will not be privy to the person’s underlying physical and mental health conditions.
And, significantly none will have had to piece together the interactions that connect the person’s biology, mental function and behaviours to their environment – pretty basic to understanding a person’s disabilities.
The first pilot of independent assessment of 513 NDIS clients occurred in November 2018 to April 2019. At a Senate hearing the NDIA reported that 91 percent of those surveyed were satisfied with the experience. But senators were critical that only 145 participated in this part; insufficient on which to base a major re-direction of the NDIS. There are 400,000 plus people receiving NDIS support.
The people who miss out
A fundamental weakness of these surveys is that the opinions expressed are from people already selected into the NDIS. In epidemiological terms the surveys may identify false-positives, that is people who should not be in the scheme, according to NDIS criteria. But the surveys will not tell us who should be getting NDIS support.
The important question is, who should receive support but have not been able to access the NDIS or who have been rejected – false-negatives in epidemiological terms. These people will include those with conditions of chronic pain, mental illness, coexisting mental and physical disorders, substance use disorders, and fluctuating physical illnesses – such as epilepsy. These are the conditions which are prevalent among homeless people.
What needs to be done?
- The planned independent assessments, as the major decision-making point for the NDIS, should be abandoned.
- The NDIS should be embedded within existing social and primary health care structures, not a stand-off, hands-off, independent and, too often, indifferent organisation.
- Primary health care, the GP, should be the pivot around which assessment and decision-making should revolve.
Ian W Webster AO is Emeritus Professor of Public Health and Community Medicine of the University of New South Wales. He has worked as a physician in public and regional hospitals in Australia and UK and in NGOs dealing with homelessness, alcohol and drug problems and mental illness.
Comments
3 responses to “Barriers to the NDIS”
I strongly share Ian’s concerns, but in the case of people with intellectual and related developmental disabilities, I am not sure if primary health care workers, including GPs are the only people needed to be involved in their assessment processes. They are certainly better equipped to be involved than assessors with no first hand appreciation of the lived experiences of people with disabilities. Before any assessment process is formally adopted by the NDIA, I need to be convinced of the merits of its validity and reliability which are the scientific benchmarks of any assessment process.
Trevor R Parmenter
Yet a problem can arise if a GP, infrequently seeing a beguiling participant, declines to accept the views of an array of professional and trained support persons who argue that she is not capable of making sensible decisions and needs an appointed guardian… and the GP, saying no, allows the person to return to a pit at home where she does not care for herself, follow instructions e.g. on wound management and lives not just at home needing 24 hour care not available, but in a cycle of restoration in hospital and respite nursing home beds. Like Josh, this is just one person.
Another difficulty with the NDIS is its distortion of local economy in a small town, paying a casual gardener or such near $50 an hour. Perhaps the going rate in Killara or Bowral but not here. (In the southern highlands of NSW dog walking is $75 per dog per hour and you can go to a park with a fenced dogs off leash area to relax with friends.)
Also: the NDIS overseeing an industry of suppliers of stuff for the disabled at prices inflated by the NDIS. (A myriad of for profit small businesses who have been protected from shut down rules.) Which is fine if you can get the cheque from NDIA, a problem for those outside: one goes online, probably to eBay, to hunt less expensive equivalents, trying to see if they meet standards.
Let’s see things in the whole… (I had to laugh a bit just now, seeing, in response to a google search for adult nappies, a business calling itself ‘Holistic Incontinence.’ )
4. The government should listen to Professor Webster who possibly has more years of personal experience caring for and about people with disabilities than anyone else in the country.