Getting support shouldn’t be this hard. Ari is four when this story begins, and changes in routine distress him. His mother works four days a week; she is the one taking the calls and asking for help.
His mother asks the school for a letter about its concerns.
The referral is triaged before the letter arrives.
The speech pathologist’s report recommends a developmental assessment.
The referral summarises it as ‘speech delay’.
Ari is four and lives in Queensland. He talks in single words, melts down when plans change and plays on his own at kindy. His mother works four days a week, and she is the one who will chase all of it.
Ari’s information was lost or delayed 3 times, and the story was told from the start 7 times. The failures in Ari’s story reflect documented patterns, with sources below.
In the proposed pathway, Ari is diagnosed on day 147. As it happened, Ari did not see a paediatrician until day 679, and waited another 70 days after that for a diagnosis.
4 selected moments from this composite story.
At pick-up, Ari’s teacher says he rarely uses more than one word at a time, is distressed by any change in routine and plays on his own. She suggests the GP.
“He’s a lovely boy. I just think someone should have a look.”
With no school letter yet (his mother has asked the school for one) and only ‘speech delay’ from the speech report in the referral, it is Category 3: to be seen within 365 days. A child under 6 whose assessments show differences across communication, social and behavioural areas would have been Category 2, within 90 days.
“Once your child’s referral has been accepted, we will advise the expected wait time.”
system $35
Dr C diagnoses autism and writes a treatment and management plan. Medicare’s rules send it to the GP and, if appropriate, the therapists; the school is not on the list, and his mother emails it to the school herself.
“Ari is autistic. Everything you and his teachers have noticed fits.”
45 min with a clinician · 10 min chasing · His family paid $208 · 0.5 days off work · system $273
A meeting with his teacher and the principal: a quiet space, a visual timetable, warnings before changes. None of it needed a diagnosis, though the school had told his mother it could do more for him with one.
0.5 days off work
“Boys are often slower to talk. Let’s wait and see.”
“We could do more for him with a diagnosis.”
“Ari is autistic. Everything you and his teachers have noticed fits.”
People who are unwell get stressed, forget details and ask questions, and care should allow for that. Open a label to see what it leaves out.
At four years and three months, Ari talks in single words. His mother passes on the kindy’s concerns and is told boys are often slower to talk, and to come back in six months. No referral.
Six months later a different GP hears the story from the start and suggests a parenting program, and a speech pathologist if the family wants one. The family pays for the speech pathologist, the first to recommend a developmental assessment.
The referral goes without the letter his mother has asked the school for, without which the rules put a school’s concern in Category 3, and without the findings in the speech report she brought, across communication, social and behavioural areas. It is triaged Category 3: to be seen within a year.
Early in his second term at school, after a meltdown in which he hits another child, Ari is suspended for two days. His mother has already collected him early six times.
Six of the ten things below, at two referrals.
A point counts as told if anyone explained it when the referral was written or the appointment booked.
The pathway we propose answers the last column: one place responsible for the case, and a status that shows where the referral is.
Ari’s story also has people in it who got it right. They are the health system as well, and most people who see a GP say the GP always shows them respect.
Noticed, and said so kindly at pick-up.
“He’s a lovely boy. I just think someone should have a look.”
Found differences in communication, social interaction and behaviour, and was the first to recommend a developmental assessment.
Took an hour, read the reports his mother brought, asked his teacher for her view, and had the fees given before the assessments were booked.
Made the changes: a quiet space, a visual timetable, and warnings before changes.
Some of the care in these stories was careless or dismissive, and the chart marks it in red. Good care also has to be reached: much of Ari’s case was lost in the waits and handoffs between the people who got it right.
Same Ari, same kindy, same GP three weeks later. Two changes: one record that his family, his kindy, his GP and every clinician can see, with his mother’s consent, so the kindy’s notes travel with the referral and his identified support needs reach his kindy and school without waiting for a diagnosis; and a pathway that prompts a developmental screen when a concern is recorded, refers on the day a need is identified and sees a child within three months of a referral, as Australia’s national autism guideline recommends, with one contact person who collects what has already been done. That is the blue line on the chart. The proposed pathway still needs the staff, appointments and funding to run it, and a diagnosis, or support starting, is where the ongoing care begins.
| Measure | As it happened | Proposed care |
|---|---|---|
| Days until a diagnosis and a plan | 749 d | 147 d |
| Recorded consultation and visit time | 10 hours 47 minutes | 8 hours 35 minutes |
| Time spent chasing | 2 hours 55 minutes | 45 minutes |
| Told the story from the start | 7× | 1× |
| His family’s cost, incl. time and lost earnings | $3,889 | $1,878 |
| Medicare, hospital and admin costs | $1,098 | $1,689 |
| Referral letters | 2 | 1 |
| Avoidable repeated tests | 0 | 0 |
| Emergency visits | 0 | 0 |
Less in the proposed pathway: 602 days, 2 hours 10 minutes of his mother’s time spent chasing and $2,011 of his family’s money and time. Medicare, hospital and admin costs are $591 higher.
| Day | For | Paid |
|---|---|---|
| 326 | Speech pathology, assessment and five sessions at full fee | $1,140 |
| 679 | Paediatrician, first visit, gap | $264 |
| 707 | Psychology assessment, two sessions, gap | $297 |
| 707 | Speech assessment, two sessions, gap | $201 |
| 749 | Paediatrician, assessment and plan, gap | $208 |
| Total | $2,110 | |
| The same case, with the fix | $1,140 | |
Ari is invented, but what goes wrong in the story follows documented patterns. Every figure here comes from official statistics, surveys, medical bodies or research, and each one links to its source.
Each patient is counted as if their journey went exactly like Ari’s, on both lines, so the totals are simple multiplication. The 1,000 is only a starting point. The totals cover every event shown, across all the years, and leave out the costs listed in the notes.
Often longer than you planned, and sometimes not by car. Some visits take hours, and some leave you unable to drive, and you may not hear about either until you arrive.
Public eye clinics tell patients to allow two to three hours, for tests and for drops that take time to work. We found no Australian standard for how long a patient can be kept waiting past the booked time. In New South Wales cancer clinics in 2024, most appointments started within 30 minutes of the booked time, and 28% of patients whose appointment started late were told how long they would wait.
Sydney Eye Hospital, outpatient factsheet · Bureau of Health Information, Outpatient Cancer Clinics Survey 2024
Drops that widen the pupils take 20 to 40 minutes to work and usually last about six hours. Their product information says not to drive until vision is clear, and public eye clinics tell patients they will not be able to drive. A patient who was not told before the day and drove there can lose the rest of it.
Tropicamide product information, sections 4.7 and 5.1 · Sydney Eye Hospital
After sedation for a colonoscopy, a patient may not drive for 24 hours or travel alone on public transport, and needs someone to take them home and, ideally, stay overnight.
Queensland Health: colonoscopy · Australian Society of Anaesthetists
State travel subsidies begin at a distance: in New South Wales, more than 100 km one way or 200 km in a week, and in Queensland, more than 50 km from the nearest public hospital. Below those distances, the schemes pay nothing towards the trip.
NSW Health: IPTAAS · Queensland Health: Patient Travel Subsidy Scheme
All of this fits in the appointment letter: how long to allow, whether drops or sedation are likely, and whether to bring someone to take you home.
Tests, drops and sedation are often needed, and a long visit can be a thorough one. What matters is knowing what the day involves before it comes.
Find a GP. Explain why you need help. Get a referral. Find someone who will see you. Wait. And if the care isn’t helping, start again with someone else.
A referral is normally needed for the higher, referred Medicare specialist rebate. Some private specialists see patients without one; others do not.
Private health insurance does not cover ordinary specialist appointments in their rooms. Medicare may pay part and leave a gap, and you still have to find someone who will see you.
Specialists set their own fees. No rule limits them, and there is no single requirement for how far ahead a patient must be told. The Department’s own paper says informed financial consent ‘is not currently established as a clear, enforceable patient right’. By September 2026, 106 of about 6,300 eligible specialists had chosen to show their fees on the government’s Medical Costs Finder; a law passed that month will let the government publish them itself.
Fee transparency consultation paper, pp. 6 and 9 · Excessive fees consultation paper, p. 17 · Minister for Health, 16 September 2026
Once a referral has been used, changing specialist generally needs a new one for referred Medicare benefits, and another appointment.
Patients should be able to question poor care and ask for another opinion without being written off as difficult.
GP visits often help: a GP can assess, gather results and follow up, and a new doctor is not always a better one. The site asks for trials of easier ways to reach a specialist, and to change one.
Getting care shouldn’t mean holding the system together.
Build on My Health Record and the referral systems connected to it, so that referrals, results, discharge summaries and specialist letters reach the patient and the people treating them, in the software they already use. Patients keep their choices, consent is still needed and access stays controlled, and there is a safe way to share the essentials for someone who does not use My Health Record.
A referral that meets agreed criteria is seen within a set time, such as three months of a referral, as Australia’s national autism guideline recommends. Waits to get onto the list are published, and one clinic is responsible for the case until the patient is seen. The patient and referrer can see whether it was received, accepted or needs more information, and who will follow up.
Copy this message, replace the parts in [square brackets] with your own details, and send it. Public specialist clinics are run by the states and territories, so your state or territory MP can act too.
Ari waited two years (749 days) for a diagnosis and a treatment plan. Along the way: 2 referrals and 7 retellings of the story. Chasing the system took 2 hours 55 minutes, and about $3,900 was lost in fees, earnings and time. In the pathway the site proposes, staffed and funded, Ari is diagnosed on day 147.
You are in these stories, including as the people who got it right. Share this page with your colleagues, and ask your college, union or employer to back the two changes.
https://www.betweendoctors.org/journeys/ari/
These composite stories follow different people through the gaps between services.
The complete record: every event, explanation and recorded cost in Ari’s story.
Choose a visit to highlight it on the chart and read what happened.
At pick-up, Ari’s teacher says he rarely uses more than one word at a time, is distressed by any change in routine and plays on his own. She suggests the GP.
“He’s a lovely boy. I just think someone should have a look.”
Dr A listens for ten minutes to the kindy’s concerns and says boys are often slower to talk. Come back in six months if nothing has changed. No referral, and nothing written down about the kindy’s concerns.
“Boys are often slower to talk. Let’s wait and see.”
10 min with a clinician · told the story from the start · 0.5 days off work · system $45
Dr A is booked out, so his mother tells the whole story to Dr B. More meltdowns, still few words. Dr B suggests a parenting program, and a private speech pathologist if the family wants one; nothing is said about a Medicare plan that could help with the fees.
“Some of this sounds like behaviour. Have you tried a parenting program?”
12 min with a clinician · told the story from the start · 0.5 days off work · system $45
His mother rings four private speech pathologists. The first place is three months away.
told the story from the start · 4 phone calls · 45 min chasing
An assessment and five sessions, $190 each, with nothing back from Medicare. The speech pathologist finds differences in communication, social interaction and behaviour, including his distress at any change, and her report recommends a developmental assessment. The report goes to his mother, on paper.
6 visits · 300 min with a clinician · told the story from the start · His family paid $1,140 · 1.5 days off work
In his first two weeks at school, the school rings four times to ask his mother to collect him early. She rings the GP practice for an appointment, and asks the school for a letter about its concerns.
“Can you come and get him? He’s very unsettled.”
1 phone call · 20 min chasing · 2 days off work
A long appointment with Dr B, who writes the referral and, at his mother’s request, a second one to a private paediatrician in case the public wait is long. The school’s letter has not come yet; the speech report his mother brings is summarised as ‘speech delay’. The form records ‘no NDIS contact’. The letter arrives a week later, after the referral has been triaged, and nobody tells her it should have gone with it. The private letter names no paediatrician, and nobody suggests one. Nobody says how long either wait might be, what a private assessment costs, or whom to chase if nothing comes.
20 min with a clinician · 0.5 days off work · system $87
With no school letter yet (his mother has asked the school for one) and only ‘speech delay’ from the speech report in the referral, it is Category 3: to be seen within 365 days. A child under 6 whose assessments show differences across communication, social and behavioural areas would have been Category 2, within 90 days.
“Once your child’s referral has been accepted, we will advise the expected wait time.”
system $35
After a meltdown in which he hits another child, Ari is suspended for two days, and there are two calls with the principal about it. By now his mother has collected him early six times. The school says it could do more for him with a diagnosis. Nobody tells his mother that, under the service’s criteria, a suspension may move a child up a category, so the service is not told.
“We could do more for him with a diagnosis.”
2 phone calls · 15 min chasing · 2 days off work
Nothing has come from the public service since it accepted the referral in February, so his mother rings it: no date, and no estimate of one. She rings five private paediatricians. Three have closed their books; she books the first opening, seven months away.
“We’re not taking new patients at the moment.”
told the story from the start · 6 phone calls · 1 h 15 m chasing · system $15
The NDIS route based on developmental delay is for children younger than 6. Nobody explained it, or the early childhood partners, to his mother before his sixth birthday. Help through an early childhood partner is still available without a diagnosis, but this route to NDIS eligibility has closed. An NDIS application based on a likely permanent impairment remains possible if the other access criteria are met. Queensland’s under-6 triage criterion no longer applies, but the school suspension could still justify reassessment for Category 2.
Dr C takes the whole history and reads the speech report his mother brings on paper, and the school’s letter. She examines him, reviews his developmental and hearing history and considers other explanations for his difficulties. She refers Ari for psychology and speech assessments with a psychologist and a speech pathologist she works with, explains why she uses them and what each will look for, and sends questionnaires for his previous year’s Prep teacher, for when school goes back. Her rooms give his mother the fees and the Medicare items for each assessment, and book both.
60 min with a clinician · told the story from the start · His family paid $264 · 0.5 days off work · system $156
Two psychology sessions and two speech sessions under Medicare’s assessment items, with a psychologist and a speech pathologist Dr C works with. The new speech pathologist repeats the language tests, as she would after a year, but cannot compare his scores with the first assessment: the first report went only to his mother and gave no scores, and the first practice, asked for them by the new one, has not sent them by the day of the assessment.
4 visits · 200 min with a clinician · told the story from the start · His family paid $498 · 1 day off work · system $382
Dr C diagnoses autism and writes a treatment and management plan. Medicare’s rules send it to the GP and, if appropriate, the therapists; the school is not on the list, and his mother emails it to the school herself.
“Ari is autistic. Everything you and his teachers have noticed fits.”
45 min with a clinician · 10 min chasing · His family paid $208 · 0.5 days off work · system $273
A meeting with his teacher and the principal: a quiet space, a visual timetable, warnings before changes. None of it needed a diagnosis, though the school had told his mother it could do more for him with one.
0.5 days off work
A first appointment, fifteen months after the referral, for a child diagnosed two months earlier, whose plan went to the GP, not to the service. His mother rings to cancel it.
1 phone call · 10 min chasing · system $60