10 July 2021
The current issue in the NDIS (National Disability Insurance Scheme) is the government’s efforts to introduce ‘independent assessments’ of people on the scheme and those who want to get on the scheme. The idea has been abandoned for the present, but that is not the end of the story. It is the beginning.
Some context is needed here. I was on a State Parliamentary inquiry into disability funding during which we heard evidence of inefficiencies within the disability sector where often there were shortages of appropriate services, and in some areas there were none at all. The real crunch time was when parents with children with disabilities realised that they were going to die eventually and wanted to make a plan for the rest of their child’s life. People would apply at various facilities, and be turned away as there were no places. They then assumed that they were on a waiting list, but usually no lists were kept. When a vacancy occurred, whoever applied at that time got it. It was mainly luck. Naturally the people trying to help their loved one wanted a guaranteed package that would continue after their death. More articulate parents and carers, who had struggled for years just wanted the money to buy the services that they felt that they needed. Many carers simply wanted more services, and hoped that a national system that guaranteed services for disability.
Given the political context of privatisation and reducing government involvement in everything, the scene was set to have disability services delivered by the private sector as a massive market for services. The private sector naturally wanted to get access to services that had been provided by government as a source of business and profit.
Government also had a real estate agenda. Some large institutions were on valuable land. The large facilities at Peat Island in the Hawkesbury and Stockton Disability Centre was on beachfront land just north of Newcastle. There was a residence for the grossly disabled opposite Wollongong Hospital that had taken years of fundraising for the parents to achieve. These could be sold off as the mental health facilities had been a few decades earlier, with the catchy slogan of putting the residents ‘back in the community’. The idea that the residents were better off isolated in a suburban homes with few facilities rather than in a community of people with the same problem and a well-structured programme of activities seemed a dubious proposition to me. Resident groups such as the relatives of long-term psychiatric facilities at Bloomfield in Orange were very scared of the suggested changes. There had been problems with the old system and some inappropriate facilities, but an overall lack of facilities was the major problem. It was not even throwing the baby out with the bathwater; it seemed more like smoke and mirrors.
The key question in dealing with any problem is how big a task is it? When the Committee asked how many people with disabilities there were, there was no answer. No register was kept. The two ways of calculating it were:
- To add up all the people on all the types of possible benefits and get to a total.
- To look at the AIHW (Aust. Institute of Health and Welfare) figures of what percentage of the population was disabled, then multiply this by the total population.
The latter method gave figures about ten times greater. So clearly if help or services were made more available, the numbers involved were going to blow out hugely from what was currently funded.
John Howard passed the Aged Care Act in 1998, which was the blueprint for the privatisation of the sector. Old people are very vulnerable. They have often sold the family home, so they are temporarily cashed up, looking for accommodation and long term care with mental and physical facilities failing, or they would not be there. Carers faced with responsibilities that they were not used to and uncertain of what care was needed were easy pickings also. The whole sector is more like a dysfunctional real estate market; a market failure due to insufficient ‘consumer information’, but also distorted incentives and priorities.
The NDIS was similar. Private operators with slick marketing made promises which would not be tested for some time, but people were signed up now. The not-for profit sector had never paid staff well, but most had a ‘care ethos’. Some of the private providers did not, and regulatory supervision was minimal. The government was pro-business and trying to give away responsibility.
But an absolute shortage of services was still a big factor. A neighbour who was a 95 year old retired academic widower wanted 2 hours a week of home help. For some reason he could not get a community nurse. The best deal he could get was 2 sessions of 2 hours at $65 an hour. The lady delivering the service was paid $21/hr. So much for private services; the ‘overheads’ are huge. I had suggested to Kevin Rudd’s 2020 Vision in 2000 that the Government needed to licence service providers as individuals if they wanted a market model, and our neighbour could have selected a person on a one to one basis. (I never even got an acknowledgement).
Now the government wants ‘independent assessors’ to evaluate cases, presumably to lessen costs. A number of points can be made about this. It assumes that the assessors will learn more about the patient in an interview than the people who work with them already know. The new management philosophy since the 1980s always assumes that a manager at the top will know more than the person actually doing the job. Naturally if the object is to save money and have the person at the bottom paid minimally, requiring no skills and interchangeable in staffing, this may be true. But if the people at the bottom were respected, trained and empowered, the need for the middle level experts might be much less.
‘Independent Medical expert’ assessors are used in the Workers Compensation and CTP systems. They work for agencies hired by insurance companies. Often they find the patients either have nothing wrong with them, or it is degenerative and not related to their injury. These experts are even flown from interstate and save insurers money by denying treatments. Presumably if they find in favour of the patients, their agency gives them less work. The agency takes its cut and has to please the insurer. So the systems are more complicated and an ever higher percentage of the money is spent in trying not to give services. The NZ National Accident Compensation scheme, though it was government owned, went to a private insurance model and the same thing happened. Doctors who had a track record of denying liability were flown around the country to do their medicals.
The assumption may still be that well intentioned assessors still can do better. My widowed mother lived alone in the family home and had a stroke. A neighbour noticed her confused, walking on the balcony. She recovered, but seemed to have lost some judgement. She was assessed by an ACAT (Aged Care Assessment Team) who said that she could live alone in supported accommodation. So we got her into a unit in the grounds of an old house, where she could book a dinner at a days’ notice in the communal dining room, have a nurse onsite during the day, and had a right to a nursing home bed if she ever needed one. Seemed perfect. She said that she could look after herself. Can you microwave a dinner? Yes. OK. Do it. It got done. No problem. Dinners in the frig. Sweets in the jar on the mantelpiece; see you in 2 days. Arrive in 2 days. Dinners still in the frig. Lolly jar empty. Very hungry- can we go to lunch? She could do anything when asked, but could not initiate a process. She could not think to get a dinner from the frig, or book lunch tomorrow in the communal dining room, nor ask for help. The one-off team could not pick this. Neither did the family. But it emerged when the situation at home was known. This is just a story, but a carer who is savvy and properly trained will know more than a university-qualified assessor who has only a short knowledge of the patient. And naturally the person on the job actually delivers the service and is not an extra cost. They can also judge relative needs of people on a run or in an area if resources are limited.
So the scheme to bring in assessors is the tip of an iceberg.
Private insurance models have huge problems at many levels. The overheads of Medicare are a bit under 5%. The overheads of Private Health Insurers are about 12%, and they cannot refuse to pay doctors. The overheads of US Health insurers are about 12-36%, as the best way to improve profits is to cut costs (payments to patients) rather than increase services and then try to prove you have and sell on that basis. At the bottom of the efficiency barrel is our own NSW CTP system with overheads of almost 50%. The question has to be what is the focus of the system? Delivering services, or saving money? The US health insurers, like our CTP scheme are very good at making money. What they make their money from just happens to be people rather than widgets. The main cost savings of privatisation seems to be destroying award conditions and lowering ‘staff costs’. The immense administrative savings from universal systems, where determining entitlement and paying for profits are eliminated cannot be matched by any private system, despite what the ideologues might pretend.
The NDIS is currently a fund supposedly to help people with disabilities. These people apply to get ‘packages’ of money and services. Businesses persuade people to spend their packages with them. It is a market. But there are more people with disabilities than was expected, for the reasons discussed above. So a new level of assessors, were to be rolled in, but a huge outcry has prevented this temporarily. But the problems that led to the need for the assessors remain implicit in the design of the NDIS, which is fatally flawed. The government, particularly this one, is not going to take this very large bag of lollies from the private sector. The totally inefficient Private Health Insurers (PHI) give money to political parties and advance by stealth, letting Medicare become irrelevant for health care. Disability is now also privatised, and a new private lobby is in there. It has not yet generated a Royal Commission into its rip-offs, but it will, not that the Aged Care Royal Commission has stopped the privatisation of aged care. The political forces are too great. It is ironic that as Medicare is starved and pays less and less of the doctors’ fees its levy was increased, using a wave of sympathy for people with disabilities to make a bigger pool of money for increasingly private disability providers.
How to fix the problem?
I do not pretend to have all wisdom on this, but in dealing with difficult political problems I think it is wise to set a direction, take some basic steps and consult widely, looking for advice particularly from those who do not get an immediate financial benefit.
Here is a start:
Recognise that disability is not a sickness. Some disabilities are inherited; others are acquired due to accident, illness or aging. The sector is quite diverse, often divided up by the type of disability or how it was acquired. Sickness has an ‘episode’ model, based on traditional infectious diseases or surgical treatment models. Disability tends to be long-term and may improve or be worked around, or may degenerate gradually. As such it needs long-term solutions like welfare, but using the term ‘welfare’ now implies charity. Disability funding is funding to enable those less fortunate to have as normal a life as possible. From our common wealth, we give more to those who need more so that our society has equal opportunity for all. We are being taught that tax must be minimised and if we are getting less than we pay we are being ripped off. A better model is to consider the statement by Rhonda Galbally, ex-CEO of VicHealth, ‘There are two populations, the disabled and the not-yet disabled; if you are lucky enough to be in the second group, you should be happy to help pay for the first’.
The idea of a universal service obligation is the cornerstone. We should start with the assumption that people with disabilities should live in our society with as normal a life as possible and we should adapt to support them in as cost-effective way as possible.
My suggestion is that the Community Nursing service is the basic structural framework. We assume that people with disabilities will be living in society, and need varied and integrated support. If they are born with a disability or acquire one, they will come in contact with the acute hospital system, which will hopefully document their situation and alert the community support system. People on the ground will then liaise with family to see what support there is for independent living, and organise resources, calling in specialists of required. The cost of home support may be part of a package or allowance. Individuals may register to offer services for everything from shopping, cleaning and lawn mowing to medical or paraplegic support services. The government will register and insure both practitioners and those who use their services and may put training requirements on those who wish to register for some skills. A market with consumer feedback as exists for restaurants or other practitioners will allow people to hire help directly without big corporations adding massive overheads.
Whether the monies are paid separately of via Centrelink is an administrative question, but Centrelink has to have a major makeover so that it is not the niggardly decider of the ‘worthy poor’ with its chief function being to avoid paying anyone, or paying as little as possible. If society cannot find everyone employment, we must share what we have to those who are disadvantaged by disability or circumstance. This will collide head on with the problem of increased numbers of those with disabilities, but the extra load must be seen as part of having a decent society.
The way we are going seems to be privatising, allowing huge profits, then running out of money and shutting the gate on those who do not yet have packages. The independent assessors were merely the instruments of Managers who were not able to make their own assessments and did not trust the people who actually deliver the services. The assessor problem was the tip of the iceberg of a system that has all its underlying assumptions wrong, but sadly has a lot of political power that having been created, may not be able to be undone. The first step is to understand what is happening. Hence this lengthy post.