The people with disabilities who regularly miss out

Disability has been co-opted by bureaucracies, professional bodies and institutions, often in a harmful way … Instead of seeing welfare as a social drain, ‘faring well’ should be an act of decency, a helping hand to a contributing life.

When speaking to students and trainee doctors, Harvard Merrington would describe patients presenting with a disability in general practice. Not a disease or diagnosis. His idea of disability has influenced my thinking ever since then. By disability he meant this person was not a case of disease, nor a diagnostic problem. This was a person needing help with physical discomfort – often painful, sometimes a feeling of unease, stress or sadness, or, more simply, not fitting in. Dr Merrington was a progressive leader in the foundation of the College of GPs (RACGP).

But his ‘disability’ has been co-opted by bureaucracies, professional bodies and institutions; often in a harmful way.

We see this among the marginalised people at the Exodus Foundation medical clinic in Ashfield.

Before 1993, disability was a medical condition expressed in the cascade: impairment –> disability -> handicap. This concept was seen as medical control by disabled people. The world-wide reaction which ensued in the communities of disabled people led to disability being reformulated in the WHO International Classification of Functioning, Disability and Health (ICF).

In the WHO classification, disability becomes an all-encompassing framework – body systems, impairments, activities, participation and, especially, environmental factors. And more importantly, in place of deficiencies and deficits, disability now focused on capabilities and potential which extended into community, social and civic life. The person’s “lived experience”. These are powerful social statements, a far cry from the reductionist benchmarks so favoured by social security and compensation systems.

The Disability Support Pension

The Disability Support Pension (DSP) – income support for people with disabilities – is based, not on disability, but on impairments for work and disturbingly makes a determined effort to exclude other factors. The Social Security Act says: “Impairment means a loss of functional capacity affecting a person’s ability to work that result from the person’s (medical) condition.” A person’s impairments are rated against a table of “points” – an arbitrary and consensus-based scale.

But in the WHO ICF classification, disability is not an impairment; it is a biomedical state – an anomaly, defect, disturbed organ – measured against a population standard, it is not the whole-person functioning of disablement.

Impairment does not mean sickness or disease, or causation. And most significantly  in the ICF criteria, environmental factors are important– e.g. air quality can affect breathing, ambient sound can affect hearing, or walking and balance can be difficult in irregular terrain.

Hurdles to the DSP

The DSP’s criteria for work impairment is the first hurdle:

• work relates to work available anywhere in Australia, not necessarily work available locally,
• it is irrelevant whether public transport is accessible locally to get to work, and,
• it is irrelevant whether facilities and shops are unavailable locally.

Which means where a person lives, their community and availability of facilities and shops is irrelevant to the need for support payments.

Medical hurdles

There are insuperable barriers for the very poor, those most in need.

The medical condition must be fully diagnosed, fully treated, a stable and permanent condition. For low-income people, the decision as to what is a fully treated, stable and permanent is commonly unachievable. This is certainly the case for the homeless and borderline homeless people attending the Exodus Foundation clinic.

Then, the applicant must produce medical evidence. For the most common applications – mental disorders – a report from a psychiatrist is required, with a GP’s report backed by a clinical psychologist as a fallback. Others need specialists’ reports; but specialist practice is far removed from the lived experience of many claimants, especially the very poor, and then there are the costs of upfront fees. (See Pearls and Irritations: Peter Brooks and John Menadue, 18/1/2018 & 20/4/2017; Kerry Breen and Kerry Goulston, 28/9/2020)

DSP assessments are made by appointed officials (Job Capacity Assessment officers and Disability Medical Assessment contracted doctors) who use a ‘measure’ of impairments – the ‘points table’. The process is weighted towards hard evidence and rejection. Conditions of chronic pain, mental illness, coexisting mental and physical disorders, fluctuating physical illnesses – such as epilepsy – are a poor fit. The family doctor’s opinion, the opinion which best appreciates the person’s capacity and needs, is largely ignored.

And the assessment fails people with multiple problems. A person’s breathlessness will amplify anxiety, poor vision will upset balance and activity. Any clinician knows that multiple pathologies do more harm than one pathology alone; yet having multiple impairments is discounted. What should be taken into account in assessment, is that problems in one function will amplify the effect of another problem on the overall capacity of a person.

The people who miss out

Playing to the belief that too many people are on the DSP, Social Security services now require original records to be produced, and they have tightened eligibility criteria and assessment processes, added participation requirements, introduced targeted reviews and referral to a government contracted doctor.

There was a reduction of 4.5% in DSP recipients between 2010 and 2018 running in the opposite direction to 1.5% growth in population. Several thousand people who had a reasonable expectation of support from the DSP missed out.

At the Exodus Foundation clinic we see people intimidated in applying for a DSP. They fear they will fail again and be humiliated. If there is a genuine intention to get these people back to work, it doesn’t work. For those whose ‘score’ falls short of the magic number, they may receive Jobseeker payments and be required to present for job assessments and interviews; so often fruitless and a trap for further impoverishment.

The natural response is to give up, without hope, leading to mental disturbances, alcohol and drug use and antisocial behaviour. A pattern too familiar in the homeless scene. With profound social and economic costs to society and the individual.

To expect people who we have treated in this way to get back to work and to fulfil their side of the “mutual obligation” when we, as a society, have not fulfilled our part, is a collective fantasy.

These are people whose lives have so often demonstrated they will never make the life others believe they should lead.

What needs to be done?

1. The report of the Royal Commission into Violence, Abuse, Neglect of People with Disabilityis a long way off; it should address the barriers in access to income support by disabled people.
2. The assessment of a disabled person’s capacity to earn a living should be based on the International Classification of Functioning, Disability and Health (ICF) and include evaluation by experienced medical and social workers and community representative. In other areas of health and mental health, evaluations are based on multidisciplinary assessments, such as in Mental Healthlegislation.
3. Primary health care, and the GP, should be the pivot around which assessment and decision-making should revolve. When the Aged and Invalid Pension Act was introduced in 1910, it assumed a wholistic assessment of the persons capacity for work and relied on reports from the GP.
4. Services should be available and prepared to intervene early in the trajectory of those whose skill-sets and life-skills place them at risk. Employers should, as far as is possible, attempt to keep persons with disabilities at work.

Instead of seeing welfare as a social drain, ‘faring well’ should be an act of decency, a helping hand to a contributing life.