Diabetes and Disability in Australia: The Risk and the Monitoring Gap

Diabetes and disability in Australia: two and a half times the risk, a fraction of the monitoring

Two findings, side by side.

A meta-analysis published in the Journal of Applied Research in Intellectual Disabilities in 2022 pooled 33 studies covering 55,548 people with intellectual disabilities. Diabetes prevalence came to 8.5 per cent, and compared against age- and gender-matched controls — 42,684 people with intellectual disability against 4,177,550 controls — the odds of having diabetes were 2.46 times higher.

A separate Australian study, using the MedicineInsight primary care database to examine 3,840 children and adolescents newly prescribed antipsychotics across 488 practices between 2011 and 2017, looked at whether anybody checked them for the metabolic side effects those drugs are known to cause. Within twelve months of the first prescription, weight was recorded in 39.1 per cent. Blood pressure in around 29 per cent. Blood glucose in 12.9 per cent. Waist circumference in 1.6 per cent. The authors’ conclusion was that monitoring rates were “well below guideline recommendations.”

Put them together and you have the shape of the problem. The population at highest risk of diabetes is the population least likely to be checked for it — and a substantial share of that elevated risk is iatrogenic, meaning it comes from the medication the health system prescribed.

That is a different kind of failure from most of what this library covers. It is not a gap in access or a shortfall in funding. It is a thing we are doing, and then not looking at.

This is written from inside a New South Wales disability service that supports participants living with diabetes. We are not a diabetes service, we do not prescribe, and nothing here is medical advice. Diabetes care is health-system funded and delivered — the National Diabetes Services Scheme Helpline on 1800 637 700 is free and a far better source on diabetes itself than anything we could write. What this library covers is the disability side: who checks, who injects, what happens when somebody cannot say they feel strange, and what diabetes leaves behind.

The Australian baseline

Before the disability-specific picture, the general one, from the Australian Institute of Health and Welfare’s Diabetes: Australian facts.

Prevalence. About 1.3 million Australians — 5.1 per cent — had diagnosed diabetes in 2021, excluding gestational diabetes. Diabetes Australia puts the current figure at around 1.5 million, with roughly 120,000 new diagnoses a year and another 400,000 Australians at high risk.

Growth. The number of people living with diabetes rose almost 2.8-fold between 2000 and 2021, from 460,000 to 1.3 million. Age-standardised prevalence went from 2.4 per cent to 4.3 per cent, and has been relatively stable since 2015.

By type. In 2021 there were about 3,000 new type 1 diagnoses (12 per 100,000) and 45,700 new type 2 diagnoses (178 per 100,000). Type 1 incidence has stayed flat at 11 to 13 per 100,000. Type 2 incidence actually fell 43 per cent between 2000 and 2021 — the growth in prevalence is driven by population ageing and by people living longer with the condition, not by more people developing it. Gestational diabetes affected 53,900 women who gave birth in 2021–22, about 18 per cent, and its incidence more than doubled between 2012–13 and 2021–22.

Age. Nearly one in five people aged 80 to 84 has diabetes, against 0.7 per cent of those under 40.

Deaths. Diabetes was the underlying cause of about 6,000 deaths in 2022 and contributed to about 21,900 deaths — 11 per cent of all deaths in Australia.

Hospital. About 1.2 million hospitalisations involved diabetes in 2021–22, 10 per cent of all hospitalisations. People in remote and very remote areas were 2.5 times as likely to be hospitalised for diabetes as those in major cities.

Complications. There were 6,300 lower limb amputations in people with type 2 diabetes in 2021–22.

Cost. Diabetes-related health expenditure was about $3.4 billion in 2020–21, with type 2 accounting for 68 per cent of diabetes spending. Type 2 diabetes caused around 124,000 years of healthy life lost — 2.2 per cent of Australia’s total disease burden.

Why the risk is higher with disability, mechanism by mechanism

The 2.46 figure is not a mystery and it is not primarily genetic. It has identifiable, mostly modifiable causes, and naming them matters because each one is a place to intervene.

Medication. This is the largest and most under-discussed driver. Second-generation antipsychotics cause weight gain, insulin resistance and dyslipidaemia. They are prescribed at high rates to people with intellectual disability and to autistic people in Australia — frequently for behaviours of concern rather than for a psychotic illness, which the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability examined at length. Mood stabilisers, some antidepressants and long-term corticosteroids add to the picture.

So a meaningful proportion of the excess diabetes in this population was prescribed. That reframes it from a lifestyle problem into a medication-monitoring problem, and the monitoring data above tells you how that is going.

Physical activity. Lower for a great many people with disability, and for structural reasons rather than individual ones: inaccessible gyms, no funded exercise support, transport barriers, and support hours allocated to personal care rather than activity.

Diet in supported settings. Food in group homes is frequently bought, prepared and portioned by somebody else, on a budget, by workers with no nutrition training, with limited scope for the person to influence it. That is a food environment nobody would choose, and it is nobody’s deliberate fault.

Specific conditions carry specific risk. Down syndrome is associated with elevated rates of both type 1 diabetes and autoimmune thyroid disease. Prader-Willi syndrome involves hyperphagia and a high rate of type 2 diabetes. Spinal cord injury produces substantial cardiometabolic risk through muscle loss and altered body composition. Myotonic dystrophy involves insulin resistance. Cystic fibrosis-related diabetes is a recognised complication in its own right. These are covered in a separate guide here.

Reduced muscle mass changes the arithmetic. Where muscle mass is low — after spinal cord injury, in advanced neurological conditions, in people with limited mobility — standard body mass index underestimates adiposity. A BMI read against general population cut-offs provides false reassurance, which means risk gets missed on paper as well as in practice.

Screening does not happen. The monitoring data speaks for itself.

The outcome gap, and where it comes from

The broader health picture for people with intellectual disability in Australia is set out in the National Centre of Excellence in Intellectual Disability Health’s State of Play report, published in March 2025: a median age at death of 54 years, around 27 years earlier than the general population, with 38 per cent of deaths classified as potentially avoidable — more than double the general population rate.

Diabetes sits inside that figure, and it gets there through three mechanisms.

Late diagnosis. Type 2 diabetes develops slowly and its early symptoms — thirst, frequent urination, fatigue, weight change, blurred vision, recurrent infections, slow healing — all require either the person to notice and report them, or somebody around them to interpret them correctly.

For a person with communication disability, none of that is reliable. Increased urination gets recorded as a continence issue and managed with products. Thirst gets read as a behaviour. Fatigue gets attributed to the disability, or to medication, or to mood. Weight loss in somebody with swallowing difficulties gets blamed on the dysphagia. Recurrent thrush or skin infections get treated one at a time.

This is diagnostic overshadowing — a new symptom in a person with a long-standing disability being absorbed into the disability rather than investigated as something new. The NCEIDH report names it explicitly, alongside unconscious bias, miscommunication, the absence of the person’s usual support people from consultations, and poor supported decision-making.

Worse management once diagnosed. Diabetes care is unusually dependent on self-management — testing, dosing, carbohydrate awareness, foot inspection, recognising a low. Every one of those assumes capabilities that may not be present, and the standard education is not built for people who need it differently. Easy Read material exists but is rarely offered. Appointments are fifteen minutes. Diabetes educators report limited confidence working with people with intellectual disability, and the person’s support workers — who are actually doing the daily management — are typically not in the room.

Complications found later. Retinopathy, nephropathy, neuropathy and foot disease are all identified by surveillance in people without symptoms. Surveillance requires appointments somebody has to book.

The complications, and the two with the sharpest Australian numbers

Feet and amputation. Diabetes Feet Australia describes diabetic foot disease as Australia’s leading cause of amputation, and reports that Australia has the second-highest diabetes-related amputation rate among OECD countries — attributing this partly to a lack of coordinated interdisciplinary foot disease services. There were 6,300 lower limb amputations in people with type 2 diabetes in 2021–22.

For somebody with a disability this risk compounds in a way that is directly analogous to pressure injuries. The mechanism is identical: peripheral neuropathy removes the pain that would normally make a person shift, check or stop; nobody can see their own feet properly; and the damage is silent until it is deep. Add reduced mobility, footwear that does not fit, feet that cannot be reached or seen, and a worker who has not been told to look — and the ulcer is found when it smells.

Eyes. Diabetic retinopathy is a leading cause of vision loss in working-age adults and is detected by examination in people with no symptoms. Australian data from the National Eye Health Survey indicated a retinal screening rate around 78 per cent among non-Indigenous adults aged 50 and over with diabetes, with a gap for Aboriginal and Torres Strait Islander Australians — and the survey excluded adults with type 2 diabetes aged 18 to 49, so the picture for younger people is less clear. Screening rates in people with intellectual disability are not well measured, which is itself informative.

The others: kidney disease progressing to dialysis or transplant; cardiovascular disease; peripheral and autonomic neuropathy; and an elevated rate of depression, which interacts with everything else.

The three questions this library is actually about

Most writing about diabetes is about diabetes. This set is about the three places where diabetes and disability collide, and where nobody else writes anything useful.

Who injects, and are they competent? Insulin administration appears in the NDIS high intensity skills descriptors as a subcutaneous injection, which means a provider has to demonstrate individual worker competency against a current plan from the treating team. Insulin is also one of the highest-risk medications in community care — wrong dose, wrong insulin, wrong time, double-dosing between shifts. A separate guide here covers what workers can and cannot do, and how to test whether a provider is actually doing it properly.

What happens when somebody cannot tell you they are going low? Hypoglycaemia is the acute danger in insulin-treated diabetes, and its early warning system is subjective — feeling shaky, sweaty, strange, confused. A person who is non-speaking, who has an intellectual disability, or whose baseline behaviour is unusual, may show a low as agitation, aggression, withdrawal, drowsiness or nothing at all. Workers read it as behaviour. This is the most dangerous single scenario in this library and it has its own guide.

Who decides what is in the fridge? Here is the live tension nobody writes about. Managing type 2 diabetes in supported accommodation often means influencing what somebody eats. Done without care, that becomes control — and the NDIS Quality and Safeguards Commission’s regulated restrictive practices guide lists “locking a door, cupboard or fridge to prevent a person’s access” and “preventing access to a certain area in their environment, such as the kitchen” as examples of environmental restraint, which requires authorisation, a behaviour support plan and reporting to the Commission.

Providers get this wrong in both directions. Some lock fridges with no authorisation at all. Others, frightened of the restrictive practice framework, provide no structure whatsoever and let somebody’s HbA1c run at a level that will cost them their feet. Both are failures and there is a defensible path between them. It has its own guide.

Where the NDIS does and does not sit

Briefly, because there is a full guide here.

The NDIS does not fund diabetes care. Insulin, oral medications, test strips, pumps, continuous glucose monitors, endocrinologists, diabetes educators, dietitians for diabetes management, and podiatry for diabetes-related foot care are health-system responsibilities — delivered through Medicare, the Pharmaceutical Benefits Scheme and the National Diabetes Services Scheme. Diabetes is a chronic health condition, and the NDIS funds disability supports arising from permanent impairment, not treatment of health conditions.

What the NDIS does fund is the disability support of a participant who happens to have diabetes: a worker to administer insulin and monitor glucose under a clinical plan, assistance with meals, and the capacity building to move somebody toward managing it themselves.

And where diabetes has caused permanent impairment, the position changes entirely. The NDIA’s own guidance states that access does not depend on how an impairment arose, and gives amputation as its example of a health condition causing disability. An amputation, permanent vision loss, kidney failure requiring dialysis, or disabling neuropathy are assessed on the impairment, not on the diabetes that caused it. Both-eye permanent blindness appears on NDIS List A in its own right. The pathway is there, and people with diabetes are almost never pointed toward it.

The lever that works, as it did for cancer

If you support somebody with intellectual disability, the single highest-value action is the same one that appears in the cancer library on this site, for the same reason.

MBS item 707 funds a prolonged annual health assessment — more than 60 minutes, once a year — for people with intellectual disability, booked directly with a GP, no referral needed. MBS item 699 funds an annual Heart Health Assessment for the same group, which is directly relevant to cardiometabolic risk. The Comprehensive Health Assessment Program (CHAP) is the free Australian tool designed for it, with an adult version from 2023 and a youth version for ages 12 to 18 from 2024, and Part 1 is completed before the appointment by the person with support.

This is the appointment where glucose gets checked, where weight against last year becomes a number rather than an impression, where a medication review happens, where feet get looked at, and where the retinal screening gets ordered.

Given that 12.9 per cent monitoring figure, it is also the most realistic mechanism available for catching medication-induced diabetes before it causes damage.

If the person you support is on an antipsychotic and has not had their glucose checked in the last twelve months, that is the phone call to make this week.

What this set covers

Thirteen guides, built around the three collision points above and the complications that follow:

• This overview
• What support workers can and cannot do with insulin and glucose monitoring
• Hypoglycaemia in somebody who cannot report symptoms
• Antipsychotics, metabolic syndrome and the monitoring failure
• Diabetes and intellectual disability specifically
• Continuous glucose monitoring as a safeguard
• Feet, ulcers and amputation prevention
• Diabetes and the NDIS funding boundary
• Permanent impairment from diabetes, and NDIS access
• Food, choice and the restrictive practice question
• Diabetes alongside specific conditions
• Sick days, diabetic ketoacidosis and emergencies
• Self-management adaptations for vision loss, limited dexterity and cognitive impairment