This is where we are with the NDIS. The problem is not the diagnosis of autism, or the demonising of parents of kids with mild to moderate disability. It is the approach.
Every service, no matter how well intentioned, eventually ends up serving the privileged, while those with more significant needs miss out. This is known as “middle class drift”.
To illustrate the problem, let’s imagine a geneticist discovers a gene that accounts for a group of people with significant disability. Like most diseases, the disability varies from mild to severe, with some children dying in adolescence, while others live with milder consequences.
The cycle goes like this.
Lobbying: Groups of consumers, carers and specialty services approach various governments to advocate for subsidised testing and treatment. Their cause is helped by either a celebrity with the condition or a tragic outcome from delay or lack of care.
Blame-shifting: A politician or political group will adopt the cause of Disease X, and begin to film door-step interviews with people they call “sufferers”, preferably in front of a large health edifice. They will announce an initiative or at least an inquiry. There are media narratives which run to a very specific formula.
Poor Jane has had her pain dismissed for years by the medical profession who did not take her seriously (even if the condition is difficult/impossible to diagnose and difficult/impossible to treat). She may attribute this to misogyny, or gaslighting or ignorance. Jane tries to recover by “doing her own research” and joins a support group. Eventually someone, usually NOT a doctor, makes a diagnosis.
The reporters will usually call for more training (usually for GPs), an attitude shift (usually for GPs or ED doctors) and a cry for everyone to “take the patient seriously” as though the lack of services is somehow an attitude problem.
Politicians respond to community pressure: A new subsidy for Disease X testing or treatment is announced. Compulsory education for all GPs is called for, but rarely implemented, often because it is already in the curriculum, or because the curriculum is so impossibly crowded it is impossible to fit in. Sometimes, there is a new MBS item number, as though that will magically cause all GPs to leap at the chance to focus on Disease X.
Building an institute: If the problem has a large enough impact on the population, or on the hearts and minds of the people, there will be an announcement. Specific funding will be directed towards the Fancy Disease X Institute. The opening of this initiative is announced strategically, in a budget or political campaign.
There are think tanks. And often steering groups. This all takes a very long time. Grants will be given, and often they will be targeted towards trusted existing organisations. This is never general practice.A research stream is created. The first multimillion-dollar research project includes an online platform which assists in diagnosis. One of the researchers is a vendor and academic who happened to be on the steering group.
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Building an administrative process: A pension or support payment is introduced, and a form is created. The form is based on a rubric which is never openly revealed but tries to make sure the money goes where it needs to go by eliminating the undeserving somewhere in the form.
Marketing: Large amounts of money are spent on branding the initiative and advertising the service. This has a two-fold aim: to advertise the service, and to highlight the investment. There is a lot of branding. There are more door-step interviews in front of new branded services. This is very expensive.
These services initially manage few patients and are able to offer a high-quality bespoke service because there are few people to manage.
Fine-tuning: Over time, the service, payment or system becomes full. People realise that a “cheap” high-quality service is available for Disease X and stretch the edges of eligibility. The service begins to define its edges, only accepting people who have all of the features of Disease X, not the ones where the diagnosis is less clear.
The forms become more complex. An innovative consumer or carer develops an app to make accessing the service easier. Government realises it needs to manage demand, and an entrepreneur on the steering group suggests a portal or a platform or an app, to standardise access. They release a tender for an app integrating with My Health Record and it is written by one of the vendors on the steering group. It becomes the compulsory method of applying for funding, restricting access to the literate.
Magic words: At this point, there comes a shift in the rubric for eligibility that is hidden from consumers, carers and clinicians, so it can’t be “gamed”. Like a hidden curriculum, it is commonly known as “the way we do things around here”. The rubric gets tougher. There are magic words which must be included in applications so that people with Disease X disabilities are recognised and supported.
Industries of magic-word interpreters grow up, offering to fill in the forms in a way that will ensure entry into the increasingly overloaded service. They work out exactly how to frame a patient’s need by using the appropriate wording to secure access. Governments, of course, are appalled that this occurs, and blame clinicians for not being “honest”. Another layer of assessment is increasingly required: occupational therapy reports, educational reports, non-GP specialist reports. This is rarely funded.
Middle class drift: At this point, the less privileged, who can’t solve the puzzle, access the app, or read the increasingly difficult form, give up and the service is overwhelmed by people with mild to moderate symptoms and considerable privilege.
These people have the stamina, and social resources to seek help from others who have already solved the puzzle. More administrative complexity is introduced, using administrative processes to stem the flow.
A call for a Royal Commission: The inequity becomes so obvious that consumers, carers and clinicians recruit the media to oppose the current structure. Lobbying recommences and we restart the cycle.
This is where we are with the NDIS. The problem is not the diagnosis of autism, or the demonising of parents of kids with mild to moderate disability. It is the approach.
Trying to fix gaps in the system with administrative duct tape never works. If schools had smaller class sizes (an evidence-based strategy) perhaps those kids would get the care they need without additional funding in public schools.
If public health services were funded more appropriately (another evidence-based strategy), perhaps multi-disciplinary teams would be available for care without duct-taping together individual private practitioners.
If GPs were funded to take time with patients, (a strategy drowning in evidence) and able to access investigations without the threat of PSR and nudge letters, perhaps diagnoses would be made. If disability support pensions were adequate, perhaps there would be no need for additional funding.
Is it simply that these ideas are not announceable?
Or is that, as a community, choice and control is so important that government would rather sacrifice access to the least literate so the illusion of choice can be given to the privileged?
Choice and access are often at either end of a spectrum. The more choice, the more complexity. The more complexity, the less access.
Perhaps in the end it is more important to fix the underlying plumbing than try to duct tape together a system that is leaking this badly.
Associate Professor Louise Stone is a working GP who researches the social foundations of medicine in the ANU Medical School. She tweets @GPswampwarrior.
