Chapter 4Accessing treatment and support services
4.1Once a person has received a formal diagnosis of attention deficit hyperactivity disorder (ADHD), it can be difficult to obtain appropriate healthcare and support. The Health Care Consumers' Association (HCCA) submitted 'ideally, diagnosis would lead consumers directly to support to manage the symptoms and life impacts of ADHD. This is not the experience of the consumers who provided feedback to HCCA'.
4.2Similarly, it did not appear to be the experience of many submitters and witnesses who engaged with the inquiry. The committee heard it is often not clear what services are available, and where people can go for support. As the committee found for assessment and diagnosis, this chapter shows that support services after diagnosis may not be available or may have long wait times, and they may be prohibitively expensive to access.
4.3This chapter explores these issues further, and discusses access to medication, the costs of medicines and prescribing issues, as well as supports in specific environments such as schools and in the transition from childhood to adulthood.
4.4This chapter will show that the barriers to people with ADHD successfully obtaining the support they need to navigate their lives are myriad, and the personal impacts are significant.
Difficulties in accessing treatment and support
Lack of reliable information about support
4.5The committee heard repeatedly about the lack of information available to people with ADHD, including the next steps after diagnosis, the kinds of supports available—particularly non-medication supports—and where to go for assistance.
4.6The HCCA wrote that 'feedback suggests it is common for consumers to find that diagnosis and support are not well integrated. In fact, many services that have sprung up in response to growing demand for diagnosis do not offer other ongoing support services at all'.
4.7ADDults with ADHD provided statistics on support services based on information received from people in the ADHD community. It advised that, of the 50 to 60 people who responded to its survey, only 25 per cent of people who saw a psychiatrist were told about support services available and just 17 per cent of respondents felt that they knew what supports were available.
4.8These statistics appear to be borne out by the experiences of other submitters. For example, Claudia explained that after diagnosis the only support she was provided with was medication:
I walked out after my appointment, with a script for a medication I'd never heard of and an address for the pharmacy the approval had been sent too. Other than those two items, nothing else was told or given to me. I still haven't got any further support, other than that I have researched myself, and which costs more than I can afford.
4.9Another submitter had a similar experience, in relation to her son:
The only thing an ADHD diagnosis facilitated was access to medication. No information or help was given to understand what ADHD is or how to support someone who is both Autistic and ADHD. The barriers to follow up care are significant. There needs to be better access to supports.
4.10Luke explained his experience to the committee, explicitly noting the lack of information provided to people diagnosed with ADHD:
Another notable issue I encountered was the absence of informative materials or resources to guide me in managing my ADHD condition. There are no official pamphlets, support hubs, or dedicated programs readily available to help individuals understand the next steps in their treatment journey. This leaves patients to navigate their own paths, which can be highly inefficient and further exacerbate the challenges faced by those with ADHD.
Informed by social media
4.11Submitters told the committee they went looking for information about ADHD to fill the information gap, including from social media:
I have been unable to find good, in-depth, specialist and practical support on any Government website. I use podcasts, follow people with ADHD on social media and take part in a self-organised group at my workplace to share information to educate myself and get support.
4.12At a public hearing in Perth, Lexy told the committee how she learnt about ADHD and how to manage her symptoms through social media, despite it not necessarily being trustworthy:
Like many millennials, I first learned about adult ADHD on TikTok. I know that that's not really a reliable source, but it did show me that ADHD isn't just the stereotype that we're all familiar with …
I really struggled to find evidence based information that was directly relevant to my experience and experiences of adults with ADHD. So I had to rely on TikTok, Reddit and Twitter to make sense of my experiences and to find strategies and advice that might help me manage my ADHD and to cope with the mental health problems that it had caused along the way.
4.13Edward thought that the lack of information available to people with ADHD highlighted a failure in public policy, stating:
I think governments needs [sic] to acknowledge that people on social media are filling the research hole that is not filled by government policy. I believe our current issues are simply a result of a lack of proactivity and failure of public health policy to actively apply science to policy as would be expected.
4.14Several witnesses acknowledged the shortcomings with social media, but still considered it a reliable form of support in the absence of other options. DrMadMagladry acknowledged:
There's a reason that that's popular, and it's not just because it's out there or because it's necessarily right; it's because it's information where there is very little information to be found. It's support, even, because those influencers offer some degree of social support or understanding that you cannot access from the doctor because you cannot see the doctor.
4.15Lexy agreed, explaining:
I know I shouldn't keep mentioning TikTok, but … that gap in knowledge is filled by social media people. It's relatable. It makes you feel like you belong and that you're part of a community and that people understand you.
Diverse needs and fragmented supports
4.16People with ADHD emphasised to the committee that their needs as a community are diverse—what works for one person will not necessarily be the best support for others. They asserted that supports need to be better tailored to individual needs.
4.17Ms Emma Sharman called for a range of supports to be available for people who have self-diagnosed ADHD. She noted that, particularly given long wait times, assistance to help people with 'education, employment, and personal life settings [would work] to reduce harm and strain to mental health while awaiting diagnosis'.
4.18Submitters also drew attention to the fragmented nature of ADHD support services, which can comprise multiple referrals and multiple specialists, making navigation of the health system and the practicalities of attending a range of appointments challenging. Furthermore, responses to ADDults with ADHD's survey indicated that in many cases nobody was taking responsibility for the holistic care of patients—for 78 per cent of respondents the 'psychologist and psychiatrist don't liaise with easy other regarding management of ADHD'.
4.19The AADPA admitted that the current model of care, where specialists often work in independent private practice, exacerbates problems obtaining a comprehensive assessment, and requires people to be referred to multiple professionals, and be placed on several different waiting lists. The Royal Australian and New Zealand College of Psychiatrists (RANZCP) also noted the 'ineffectiveness of current shared-care mechanisms' and went on to observe that this 'in turn serves to reduce access to care, silo services, and deprive professionals of autonomy'.
4.20WA Health likewise acknowledged, that while paediatric workforce modelling shows that supply is adequate for WA:
… it is apparent (based on current wait times) that if the current model of service provision for ADHD were to continue, it would be inadequate to meet the growing demand for services. Thus, it is imperative that alternative models of care be explored, tested and supported to assist individuals and families waiting for a diagnosis and further management.
Need for multi-modal support
4.21A multi-modal treatment and support approach which combines pharmacological and non‑pharmacological treatments and which is tailored for the person with ADHD is recommended by the Australian ADHD Professionals Association's (AADPA) Australian Evidence-Based Clinical Practice Guideline For Attention Deficit Hyperactivity Disorder (ADHD) (Clinical practice guideline).
4.22Many submitters encouraged a more holistic approach, arguing it would help address the need for more individualised approaches and multiple support strategies, while reducing service fragmentation—improving overall wellbeing.
4.23For example, Ms Louise Brown, ADHD advocate, researcher, and a person with lived and family experience of ADHD explained the importance of a multi‑modal approach, especially for children:
While ADHD medication effectively reduces ADHD symptoms and is invaluable and often lifesaving, it does not take all your ADHD symptoms away. It doesn't rectify a lag in brain and cognitive development or make a person with ADHD neurotypical. Therefore, we need to ensure that care and support provided to people with ADHD are holistic, protective and adaption focused. Medication should only form one part of a person's treatment plan that aims to foster acceptance of disability, hope, self‑determination and personal empowerment …
The end goal is for children with ADHD to grow into self-aware. Well‑adjusted individuals who understand their condition and accept themselves fully-individuals who have learnt to harness their strengths and scaffold their challenges to the best of their ability so they can competently navigate societal expectations and the challenges they will inevitably face, and live full and rewarding lives.
4.24The Department of Health and Aged Care (Health and Aged Care) also noted the value of improving equitable access to both pharmaceutical and non‑pharmaceutical supports:
Reforms to increase access and equity to non-pharmacological and family‑based supports for people with ADHD and those around them may help encourage practitioners to consider broader, integrated treatment options for people with ADHD in line with their needs that combine medication with coaching and other supports to address the impairments that can be associated with this condition.
4.25The Institute for Urban Indigenous Health drew attention to the need for 'multi‑sectorial' supports and 'wrap around' services for First Nations children and people diagnosed with ADHD, needed to address the specific needs and vulnerabilities of First Nations peoples—including better integration with alcohol and drug services, and services for fetal alcohol spectrum disorder (which in one study showed a comorbid diagnosis with ADHD of 61per cent).
4.26The National Aboriginal Community Controlled Health Organisation (NACCHO) emphasised the vital role that aboriginal community controlled health organisations play in delivering better health outcomes, including for people with ADHD:
… research has shown that Aboriginal and Torres Strait Islander people experience better health outcomes when they access their care through an art show than through a mainstream organisation or mainstream health care provider. And this is because art shows foster trust. They provide culturally contextualised information, embedded understandings and lived experience. They are culturally safe place for community members to access primary health care and other services that are free from stigma and shame.
Long wait times and high costs
4.27Similar to the views explained in the previous chapter regarding ADHD assessment and diagnosis services, the committee was told that treatment and support services are expensive, with long wait times. MrMatthew Tice from ADHD Australia revealed:
The ADHD community also faces multiple barriers to accessing effective medical treatment and support, including medication, counselling and occupational therapy, resulting in high costs, long wait lists and inaccessible pathways to specialist ADHD health care.
4.28Mr Tice highlighted the high costs of care, drawing on both formal research and his own family's experience:
… we have hard data on this one [costs] from our 2019 Under the Radar research, which suggests that the cost per individual in a household is about $6,600 per year. Obviously, that increases with more people in the household. My own personal experience as a parent with two children with ADHD is that the cost in the current environment approaches $20,000 or more per year. That is anecdotal, but that is my family's cost.
Senator STEELE-JOHN: That is not just a diagnosis cost? That is the collective cost?
Mr Tice: That is the collective cost for my family with two children with ADHD and, to be fair, comorbid conditions as well. The ADHD portion of that, I reckon, is approaching $20,000 or more per year in my household.
4.29The committee also heard that long wait times are also a problem, with healthcare professionals, such as psychiatrists, paediatricians and psychologists often closing their books to new patients.
4.30In keeping with evidence detailed in the previous chapter, public health support services are limited or non-existent, and private services are expensive. Out of pocket expenses for ADHD support services are high as bulk billing is limited, with insufficient Medicare rebates payable—particularly on allied health services—and limited coverage by private health cover.
4.31The Royal Australian College of General Practitioners (RACGP) reported that in 2021 only 56 per cent of allied health services were bulk billed, with patients bearing an average cost of $55 per appointment.
4.32The committee was also told that access to treatment and support services in rural, regional and remote areas is also challenging, given lack of suitably qualified healthcare professionals, and the need for multi-disciplinary support which is just not available.
4.33As for assessment and diagnostic services, challenges to accessing treatment and support are compounded for First Nations peoples, people from a culturally and linguistically diverse background, and gender-diverse people.
Accessing ADHD medication
4.34Medication is a key support for people with ADHD. Evidence suggests that some people with ADHD who use medication experience stigma from their community and healthcare professionals.
4.35Further, the committee heard significant evidence that the prescribing regulations across jurisdictions were inconsistent.
4.36There were concerns around the lack of comprehensive non-medical supports being offered to people following diagnosis. These issues are discussed further below.
Types of medication and prescribing rates
4.37The committee was advised by Health and Aged Care that psychostimulants are often use as treatments for ADHD, which are classified as Schedule 8 'controlled drugs' under the Commonwealth Poisons Standard.
4.38The Clinical practice guideline outlines some of the medications available to people diagnosed with ADHD, as summarised below by Health and Aged Care:
The Guideline provides that first-line ADHD medications for children 5-17 years and adults are the stimulants methylphenidate, dexamphetamine and lisdexamphetamine. Second‑line therapies for children are atomoxetine, guanfacine or clonidine, and should only be offered in certain circumstances. For adults, atomoxetine and guanfacine are recommended as second-line therapies. However, atomoxetine and guanfacine are PBS [Pharmaceutical Benefits Scheme]‑subsidised only where diagnosis is made between the ages of 6 and 18years inclusive. Patients diagnosed as adults are unable to obtain these second-line therapies through the PBS.
4.39Prescribing rates for ADHD medications are based on PBS data on the number of prescriptions. In 2022, just over 3.17 million prescriptions for ADHD medications were issued under the PBS.
4.40Health and Aged Care indicated that the average yearly growth in prescriptions was nearly 17per cent between 2013 and 2022, with growth accelerating to nearly 28percent between 2020 and 2022. This increase may in part be explained by changes to the PBS in 2021, which made ADHD medication more accessible to adults, as well as wider awareness of ADHD in schools and by parents.
The benefits of medication
4.41Research provided to the committee indicated that stimulant medication may reduce ADHD symptoms for 70 to 80 per cent of people.
4.42The committee acknowledges that supports are an individual choice—some choose to take medication, while some people cannot take medication or it does not work. For those who chose to take medication, the committee received a range of evidence from people with lived experience of ADHD on how medication had been 'life-changing' and improved their lives. Brenton reflected on his positive experiences, writing:
The medication is by no means a magic bullet solution, and I still struggle with executive dysfunction and anxiety on a daily basis, but my ability to focus, complete tasks, and maintain positive habits, has vastly improved, along with my energy levels and motivation.
4.43Romy also found that taking ADHD medication changed her life, writing:
I had never realised the darkness that had consumed my mind until that medication kicked in. It was as if someone had pulled back the curtains, allowing the sunshine to flood in. The relief I felt was profound; for the first time in my life, my world didn’t seem so bleak.
Medication—stigma and adverse outcomes
4.44Before discussing the issues with accessing prescriptions and associated financial support, along with the limitations in prescribing regulations, the committee acknowledges the evidence it received from people about the real‑life consequences for them in trying to access ADHD medication.
4.45The committee heard from people with lived experience of ADHD and from health care professionals that stigma and unhelpful preconceptions are attached to ADHD medications, and particularly stimulant ADHD medication. Alycewrote:
… people with ADHD who actually need stimulant medication have ridiculous barriers to access the medication and are often treated like criminals or abusers because the medication that manages their symptoms happens to be stimulants. We often talk about the stigma associated with ADHD and Autism, but my experience so far is that the stigma surrounding stimulant use to treat ADHD is the absolute worst part of it all.
4.46Consumers of Mental Health WA also pointed to the concerns of one consumer worried about medication stigma:
Sometimes I get embarrassed if people see them in my bag, I don't want to be known as a drug seeker. I think there is a stigma attached with the meds. It's not something I tell people and only a very few people know.
4.47Several submitters told the committee they had been accused of drug-seeking behaviour by healthcare professionals, resulting in a reluctance to seek a diagnosis of ADHD or appropriate treatment after diagnosis, or that they had felt pressured to take a less effective drug because of perceptions of misuse. Henry described his experience:
I saw a psychiatrist who was recommended as being across ADHD. That consultation, with my wife present, consisted of him reading out the 19questions from DSM-IV, and warning me not to lie in order to get stimulant medication. It sounds ludicrous but that was the standard of consultation with a particular psychiatrist. I didn't go back and I sought further assistance. I saw another psychiatrist and was able to get medication.
4.48Carers Queensland reflected on the adverse experiences of some people:
Adults with ADHD have told us that they felt like they were committing a wrongdoing by requesting treatment for their condition. Adults have reported feeling stigmatised by pharmacists as either an addict or not really needing medication, despite the medication allowing them to maintain full time employment and participate fully in their life.
4.49The committee heard of other concerns raised by a parent of a child with ADHD, who emphasised that medication stigma is feeding the wider stigma attached to ADHD (as discussed in Chapter 2):
The attitude towards ADHD medication also feeds into the general stigma associated with ADHD. My daughter was actively discouraged from seeking a diagnosis by teachers who told her, among other things, that she 'didn’t want to be dependent on drugs all [her] life'. These same teachers wouldn’t dream of saying anything of the sort to a student with type 1 diabetes.
4.50Submitters advised the committee that they should not be penalised for seeking treatment for their ADHD, with Alyce writing:
I don’t think it’s fair for people who actually need it to be penalised and to have to go through so many (very expensive) hoops just to maintain their treatment for a lifelong condition.
4.51The committee was also told that in some cases medication is not effective, while in others, people experience undesirable side effects.
4.52MsNatalieTasker from the Society of Hospital Pharmacists of Australia also described people being treated for ADHD demanding more information about ADHD medications, including the risks and benefits of treatment.
4.53A submission from the Critical Psychiatry Network Australasia stated that in some circumstances, medication of children can 'create the illusion that the cause of problematic behaviour has been identified and addressed' but can result in the underlying problems being unaddressed.
4.54Furthermore, it was suggested by Dr Denborough that long-term studies and evidence about the impacts and helpfulness of ADHD medication use in children were limited, while in other cases it had been shown that ADHD medications could cause harm.
A range of supports are required
4.55Evidence to the committee showed that following a diagnosis many people were offered medication, and other supports were not made available.
4.56It was the view of several professional submitters that, in addition to a range of health and allied health professionals, a variety of practical supports including with 'sleep, diet, and physical activity, parent and carer training, and cognitive behavioural interventions' would be beneficial in supporting people with ADHD.
4.57ADHD WA emphasised the limitations of taking a medication-only approach, with Dr Michele Toner emphasising:
We know that pills don't teach skills, so people have to upskill themselves in managing, learn specialised parenting skills and learn skills in managing their ADHD, because the medication doesn't do it all.
4.58Dr Martin Whitely thought that there has been an over-reliance on medication to treat ADHD, driven by the pharmaceutical industry. Dr Whitely called for more independent, long-term research on the impacts of ADHD medication use to build the body of 'real world evidence in relation to the long-term safety and efficacy of ADHD medications'.
4.59Dr Cherry Baylosis from Disability Advocacy NSW also drew attention to the limitations of medication-only approaches, and the need for additional supports:
Within the public health system, there is also a tendency to rely on medication, with limited or sometimes no options for further supports and interventions. We acknowledge that medication can have great outcomes for focus and emotional regulation and memory, but supports and interventions are also really important to build skills, capacity and ability to communicate and understand others throughout life. Later in life, adults may recognise that they have behaviours and symptoms of ADHD.
4.60As detailed below, the committee heard from numerous submitters that the current limits on the 'Better Access to Mental Health' mental health sessions, which could help people with ADHD build their life skills, were insufficient and that this limits their access to appropriate care.
4.61Under current arrangements, people with a mental health plan can access 10visits to a professional practitioner perannum. However, witnesses including Mr Paul Schwerdt from the Canberra and Queanbeyan ADHD Support Group, advised this number of visits was 'insufficient to cover complex ADHD where moderate to severe impairment exists'.
4.62The Royal Australasian College of Physicians (RACP) agreed, writing that 'Medicare provides a limited number of allied health therapy sessions, but these are generally insufficient and there may be a considerable gap payment'.
4.63Another submitter told the committee 'unfortunately, I did not receive any additional resources, information or support from my psychiatrist. Only a diagnosis and a prescription'. Other people had a similar experience, with one writing, 'I figured out all of my strategies alone, I figured out all of my workplace and university accommodations alone. No support was offered outside of psychiatrist check ups of "is this medication working for you, let's adjust dosage"'.
4.64Yellow Ladybugs indicated that 80 per cent of respondents to its community survey were offered medication, and 40 per cent of respondents had received no further support or very limited support after diagnosis.
4.65The committee heard about the experiences of witness, Lexy—one of many people the committee heard from who was only offered pharmaceutical support:
I didn't get any formal resources, suggestions for psychosocial support or strategies beyond medication adherence … The approach and process of assessment, diagnosis and treatment for ADHD in adults is horribly inefficient. It's convoluted and demeaning and fails to achieve its primary purpose: to connect us with services that have a positive and meaningful impact on our functioning and well being. Yes, the medication helps, but we need accessible and affordable psychosocial supports that are tailored to our individual needs and preferences …
4.66The reasons for the lack of non-medication supports range from lack of government funded supports, to health care professionals' lack of knowledge about support services that are available, and lack of coordination of healthcare and services for individuals diagnosed with ADHD.
4.67WA Health observed the Clinical practice guideline supports the use of medication to support people with ADHD, but was more effective when combined with other supports. The guideline:
… notes that pharmacological treatment (prescription of stimulants) was more effective than non-pharmacological treatment in reducing core ADHD symptoms and that combined pharmacological and non-pharmacological treatment was better than either alone.
Harm-minimisation considerations
4.68Health and Aged Care confirmed that ADHD medications are listed as a Schedule 8 drug because of their high potential for addiction, over-prescription and misuse. A variety of views were put to the committee about the potential for misuse of medications prescribed for ADHD.
4.69WA Health outlined some of the problems associated with Schedule 8 pharmaceuticals:
Stimulant medicines (a class of Schedule 8 pharmaceuticals) are classified nationally as controlled drugs. There are well recognised harms from treatment, such as psychosis. There is also longstanding evidence of abuse, diversion and ongoing safety concerns, including in children. In general, these issues would be expected to increase in proportion to any enhanced access (i.e. number of people on stimulants), and hence, any recommendations on greater access may also increase overall community exposure to controlled drugs. Problematic stimulant use and abuse is also a healthcare cost. Adverse events, sequalae, and other complications should also be considered as costs. Strategies to minimise such events and sequalae should also be resourced.
4.70Dr Martin Whitely expressed the view that 'all ADHD stimulants are addictive and carry highest level boxed warnings because of their potential for abuse', and that, as illustrated by the WA experience:
… there is a positive correlation between amphetamine abuse rates and the legal prescribing rates for amphetamines for the treatment of ADHD. Thissupports the common-sense proposition that prescribing amphetamines facilitates the abuse of amphetamines.
4.71Other submitters warned that concerns about making access to ADHD medications easier needed to be balanced against the dangers of people misusing alcohol and drugs as a form of self-medication where they cannot access medication.
4.72The committee was warned that 'there is self-medication in the absence of proper health systems' and it was suggested that there needs to be better recognition of the complexities and nuance required when treating people with ADHD, who also have a history of substance dependence.
4.73Dr Tim Leahy from the RACGP WA ADHD Working Group observed:
There's a legitimate concern about diversion and poly-substance-use. We'retalking about people some of whom have impulse problems and a history of poor decision-making in various contexts. At the same time, untreated ADHD is a driver for many of these problems … We need to acknowledge that many people have more than one problem - there's complexity - and we have to acknowledge that some people have a history of substance abuse and it's related to their ADHD.
4.74Healthcare professionals recognised that ADHD frequently co-occurs with other conditions, including increased risk of substance dependence. RANZCP and others recognised this complexity in their submissions. They emphasised that appropriately qualified clinicians should remain responsible for prescribing (discussed below), with better linkages between addiction specialists and clinicians treating ADHD, especially for First Nations peoples with ADHD.
4.75Evidence provided by Adjunct Professor Lorana Bartels provided further context on the role of a harm‑minimisation approach:
… far from being 'addictive', for people with ADHD, there is no greater risk of substance abuse from taking stimulant medication than among those who do not take such medication. In fact, stimulants are protective against later drug abuse and alcoholism in children with ADHD, by relieving the symptoms that often lead to substance issues.
4.76Dr Roger Paterson, a consulting psychiatrist with over 30 years' experience and Vice President of the AADPA, advised that the properties of ADHD medication were known and were not concerning:
When I first started, 30 years ago, I was told that one in four patients would go paranoid-psychotic - and they'd all be addicted. I wish they were addicted! My patients ask me, 'Am I going to be addicted?' and I say, 'I wish you would be, so you'd remember to take them!' They are not addictive medications. Patients wake up craving their coffee; they don't wake up craving their dexamphetamine or Ritalin. And, as I said, the medications have been around awhile-the 1940s, the 1950s. So, if they were going to be dangerous, nasty drugs, we'd know about it.
Real-Time Prescription Monitoring
4.77Health and Aged Care explained that Real Time Prescription Monitoring (RTPM) mitigates against potential ADHD medication misuse, as it 'provides information to prescribers and dispensers about a patient's access to monitored medicines. It is designed to identify potential prescription "shopping" …'.
4.78While the Australian Government has been involved in coordinating system development and data sharing capabilities, responsibility for monitoring medicines lies with states and territories. States and territories make their own decisions about which medicines are monitored by the RTPM.
4.79Separate state and territory monitoring systems are progressively being integrated into a national RTPM system which will provide real time alerts to identify patients at risk of harm, including when they receive multiple supplies of monitored medicines. Prescribers and dispensers can then check a patient's medicine history and modify their prescribing behaviour accordingly.
State and territory prescribing regulations
4.80The regulatory arrangements for ADHD medications were outlined in Chapter1. Along with the RTPM, state and territory prescribing regulations are another mitigation to prevent unmanaged access to ADHD medications to ensure public safety.
4.81However, the committee received substantial evidence that a lack of uniform state and territory prescribing rules is a significant barrier to people with ADHD obtaining the pharmaceutical support they need.
4.82It was put to the committee that there are multiple issues with the current jurisdictional arrangements which make it difficult for people to obtain medication—particularly if their clinician is interstate, if they relocate, or if they are travelling. This could be attributed to:
differing conditions of how stimulants can be prescribed, maximum dosages, and age access limitations on some medications;
varying limitations on who can prescribe ADHD medications, with rights held predominantly by specialists;
high barriers to obtaining initial and ongoing medications due to costs and waiting times;
differing restrictions on co-prescribing arrangements;
prescription validity of six months (rather than the usual 12 months);
arbitrary dispensing period limitations;
differing requirements for clinician review;
lack of clear information about prescribing requirements and guidelines in some cases, including in relation to high doses, comorbidities, and where there is a substance abuse disorder;
prescriptions from other jurisdictions not being honoured across all states and territories; and
burdensome administrative processes for healthcare professionals.
4.83NACCHO particularly noted the impact of state and territory-based regulations on people living in remote and border communities 'where movement of clients is common and where staff may provide locum services and visiting health services across borders'.
4.84NACCHO continued that the effects of some jurisdictions not honouring prescriptions from other jurisdictions, and the requirement for prescriptions to be renewed every six months further disadvantages patients who may only see visiting specialists sporadically, or those who have to travel long distances to major centres for specialist support, 'in regions often affected by severe weather events such as wet seasons and cyclones'.
Prescribing barriers
4.85The committee heard from many lived experience submitters and healthcare professionals who advised that prescribing requirements, and in particular the need to seek a prescription renewal every six months (for stimulants) and the associated costs and administration causes a lot of stress, and in many cases prevents people accessing the support they need for their ADHD. It was explained that appointments were even more frequent when trialling new a medication or dosages.
4.86Many witnesses and submitters were unhappy at the current restrictions on who can prescribe ADHD medications and case review requirements, in particular that ADHD medication can generally only be initiated by a medical specialist.
4.87While there are provisions for GPs to prescribe ADHD medications where someone is under the care of a paediatrician or psychiatrist, and this works in some instances, the committee received substantial evidence that many GPs are not currently comprehensively trained to prescribe ADHD medications, or the overseeing clinician is not prepared to share or delegate the prescribing role. Requirements for clinician review where there is a co-prescribing GP also vary across jurisdictions—ranging from every 12 months, to every five years, to no specific requirement.
4.88The Australian Clinical Psychology Association suggested that reluctance to participate in co-prescribing in some healthcare professionals originates from 'concerns of side-effects, potential misuse of medication and subsequent concerns of official complaints', as well as the complexity of the prescribing regime and time-consuming training required.
4.89Other healthcare professions wanted to take on a greater prescribing role and expressed frustration at the current restrictions. Associate Professor Daryl Efron said, 'there are lots of other medications that GPs can prescribe that have a higher risk profile than the ADHD medicines', while Dr Tim Leahy noted:
I can prescribe all sorts of drugs, narcotics, hepatitis C treatments—you name it. I can treat cardiac failure and diabetes. I can treat any complex chronic condition. But when it comes to treatment of a person with a clear diagnosis of ADHD, for some reason, even with evidence based prescribing guidelines available, I'm restricted. It doesn't make sense.
4.90Several submitters pointed out that the current regime creates 'bottlenecks' in treatment for ADHD, imposes high costs on people with ADHD, and further limits access to medication, especially for people in rural, regional and remote areas.
4.91One person wrote 'I pay $700 as a carer (Carers Payment) every 6 months for two children to access medication', while another submitter felt current prescribing regulations 'punish' them for having ADHD:
SIX MONTHS instead of the year that most other scripts are valid...why? Because in 6 months I will still have ADHD and I will still struggle to hold down one, secure job … I will still struggle to make and keep appointments and I will still struggle (despite working at a pharmacy) to remember to fill my script (which is only allowed to be collected after a certain amount of days) before I run out and become even more unlikely to get myself organised.
Because of this window of time (between being allowed to get my meds and running out), I will sometimes end up not being able to get meds for a month … because the script expires before I have filled all the repeats. In SIX months nothing will have changed for me, I will still have ADHD and I will still need my medications to function better as a wife, mother and nurse …
Yet I will have to spend another $300 I don't have on a psychiatrist appointment I am sure someone else is desperate for their diagnosis (instead of seeing my GP which I will actually have to do anyway because I need ANOTHER referral each year!) because the medication I NEED is restricted because SOMEONE WHO DOES NOT HAVE ADHD can abuse it.
4.92Some people with ADHD felt that they were exploited by some healthcare professionals—including through high fees, requiring attendance at multiple appointments to obtain initial medication, and by clinics providing only telehealth appointments with no follow up and support. One submitter wrote:
From my own experience, some psychiatrists see ADHD as a 'cash cow'. Most of my appointments were $300-400 for a 15 minute telehealth check up and prescription refill. If I missed the 6 month deadline, I would have to pay for an $850 initial appointment again.
4.93The committee also heard that limitations on prescribing ADHD medications across jurisdictions, by age and dosage are unnecessarily restrictive, and fail to take account of physiological variations in patients. For example, DrRogerPaterson told the committee about differences between states, advising:
So you have the ridiculous situation where you have a large 17-year-old child who is virtually unrestricted - the regulations are based on milligrams per kilogram - but, when they turn 18 and have to see an adult psychiatrist, suddenly they might have to halve the dose that they were previously on just by virtue of changing from a paediatrician to a psychiatrist. It's quite farcical.
4.94Dr Norman Zimmerman also remarked on needless limitations, suggesting they were impacting on the treatment of people with ADHD:
Some patients need multiple doses per day … As well some patients need individual doses over the current PBS maximum of 70 mg … Sometimes combinations of different long-acting drugs are needed to optimize treatment which is currently prohibited under PBS.
4.95Ms Stephanie Dowden from NursePrac Australia drew attention to the complexity and inadequacy of the current prescribing rules, impacting on the effectiveness of treatment:
… there's a lot of ambiguity around who can and can't diagnose and assess. As the previous group mentioned, it varies state by state. There are rules and regulations that have been put in place. They aren't necessarily based on anything in particular except perhaps tradition and maybe outdated ideas around what should be done, rather than on looking at what the need is and how we can help the clients that need this service the most.
4.96Several submitters also advised the committee of the challenges of having to leave their prescription on file with the pharmacist, meaning it was difficult to keep track of how many repeats they had left, and were unable to access medication while travelling. Other people described the constant terror of running out of medication, given dispensing rules which restrict the window in which they can get prescriptions filled again, and the difficulties obtaining a new prescription if their prescribing clinician is unavailable, leaving them without recourse or having to go through a full assessment again.
Review of regulations
4.97Overwhelmingly, submitters and witnesses called for uniform or harmonised prescribing rules across states and territories, in order to simplify the current system and make ADHD medications more accessible for those who need them.
4.98The AADPA advocated for a national approach:
… it is a real problem, because it is such a patchwork across the different states. We have already, started to try to work with the principal pharmacists across the states, but again we get pushback there. We really need a national approach to ensure that we have consistent approaches to prescribing so that people know all the people who can prescribe and that we are doing that efficiently and effectively.
4.99However, Dr Paterson warned that states and territories may not be willing to unify, expressing concern that jurisdictions may be expected to unify under more conservative regulations, which would further restrict access to medications.
4.100Dr Whitely separately warned that 'if this [state and territory regulation] is loosened to enable GPs to initiate treatment, there will be an explosion in the number of potential prescribers that will fuel further rapid growth in ADHD prescribing rates'.
4.101In addition to work being done at the federal level (discussed in Chapter 1), the committee heard that WA commenced a review of its prescribing regulations in 2022 in response to the introduction of RTPM, with updated regulations due to be released in 2024.
4.102The RACGP called for a more fundamental review of stimulant medications, suggesting that they be reclassified as a Schedule 4 medication, given 'experts in the field do not regard psychostimulants as especially addictive'. The college noted that this would mean they could be supplied with a prescription only, and with Schedule 4 requirements already standardised between states and territories.
Costs
4.103The high costs of accessing prescribing appointments with the appropriate health professional were considered briefly above. In addition to these prescribing costs are the costs of the medications themselves.
4.104The ADHD Foundation advised that the costs of obtaining prescriptions and the costs of the medications are 'prohibitive' for 'a large percentage of consumers'. headspace National stated that this is particularly the case for young people with ADHD, and especially for those diagnosed as adults.
4.105The committee heard that the barriers are more significant for people on low incomes and that:
… for those who represent our more vulnerable groups—who also have a higher incidence of mental health issues, ADHD and other neurodiverse areas—cost and access to medications are significant.
4.106People with ADHD reported that they rationed or stopped taking their medication when they could not afford to see their prescribing clinician, or buy their medication. Senator Jordon Steele-John summarised the results of a 2022 ADHD community survey, writing:
… many choose medication as their primary support to navigate a world not designed for them. This is not cheap, either: close to half of our respondents report paying between $30 and $50 a month for their medication; a full quarter say it’s more in the realm of $50 to $100. It is no overstatement to say that as cost-of-living pressures worsen, people are being forced to choose between participating in society – which is precisely what medication affords them – and feeding themselves.
4.107Yi also explained the first-hand impacts of rationing their medication:
I am now using short acting amphetamines, but the cost is still expensive due to needing to take medications three times a day ($29.88 for 100 tablets). Because of this I ration my tablets (don’t take them on weekends or holidays), even though I think it might be beneficial to my memory and functioning (particularly the emotional regulation / impulse control side).
Lack of subsidisation under the PBS
4.108As outlined in Chapter 1, not all ADHD medication is subsidised through the PBS, making can make medication more expensive and harder to access for some people, to their detriment. According to the RANZCP, 'current scheduling within the PBS inhibits the delivery of best practice treatment for ADHD, including pharmacological'.
4.109Submitters especially noted the current 'arbitrary' age and dosage restrictions which limit subsidised access to certain long-acting medications, and the current requirement for adults to have a childhood (or retrospective) diagnosis of ADHD to access certain non-stimulant medications under the PBS. Submitters advised that non‑stimulants are often used if there are concerns about substance misuse or if stimulants are not suitable, however, the costs of these treatments are much higher for people diagnosed with ADHD as an adult.
4.110Submitters also pointed out the current discriminatory and inequitable access to medication, advising that there is no medical basis for the age restrictions. Andrew explained the impacts on his life:
I’ve mostly not had access to PBS subsidies because I’ve been diagnosed as an adult. This is medically unjustified discrimination, being based on age of diagnosis only, while the diagnostic criteria require that ADHD originate in childhood …
There is no medical justification for this distinction, and it needs to end. Yes, it will increase the PBS budget, but it will decrease financial costs that lie outside the PBS budget, as well as the massive human cost. There is some movement, though painfully slow, on this issue …
4.111Kathleen highlighted that this restriction disproportionately affects women, who are much more likely to be diagnosed with ADHD later in life because their symptoms are not as well understood, writing:
The main change that I want the Senate to make is to have ADHD medication covered under the PBS and for those diagnosed as adults to be able to access medication at the same cost as those who are diagnosed before 18 years of age. This is a feminist issue. Women are diagnosed much later, because of gender bias and misinformation, and are therefore more likely to have to pay a higher price for medication that is lifesaving.
4.112Further limitations in the PBS were cited by the Australian College of Nurse Practitioners, which advised that 'Nurse Practitioners are restricted by the Pharmaceutical Benefits Scheme from initiating or maintaining prescriptions for ADHD medications like Guanfacine, Atomoxetine, and Clonidine', despite being qualified and certified to do so. This means that when these medications are privately prescribed by Nurse Practitioners patients bear the private costs—over $100 per month.
4.113The Society of Hospital Pharmacists of Australia aired its concern that the addition of new drugs generally requires a sponsor or drug company to initiate an application. It highlighted that this is usually driven by economic incentives, which may be low for older medications or medications which are off patent. Once an application has been made, it then takes time for approvals to be made and changes put in place. While patients can request to import medicines through the Therapeutic Goods Administration special access scheme—if they do this privately they bear the full cost of the approval.
Accessing supports for children
4.114While there are numerous challenges for adults in accessing treatment and support, including with the use of prescribed medication, children with ADHD face unique support requirements in schools, out of home care, and as they transition from childhood to adulthood.
In schools
4.115The impacts of a child with ADHD's experience in school were examined in Chapter 2, including the effects of a formal ADHD diagnosis and the quality of the support received.
4.116Further to that, the committee heard that schools need to be resourced to better support neurodivergent students, including those with ADHD. Evidence suggested that current levels of resourcing and training do not support teachers and other educators to provide meaningful support. Dr Kathy Gibbs from ADHD Australia highlighted the lack of training for teachers, despite them being on the front line working with children, advising:
As an expert researcher in that field, I know that teacher knowledge and understanding of ADHD is very limited. It is often inaccurate. They have some knowledge and understanding, but it's not particularly good. Oftenthe adjustments are fairly trivial and in the long term do not work. Therefore, it is so important that we upskill our teachers, because they are usually the first ones to recommend a diagnosis.
4.117The availability and quality of supports in schools was found to be variable, with the response largely dependent on the awareness, interest and capacity of individual classroom teachers. One submitter told the committee about their child's experiences:
On our experience of ADHD in the classroom, we have seen both ends of the spectrum of how teachers can handle it. Our experience in year 1 was a disaster! The year 1 teacher claimed to understand neurodivergent kids and mental health, but used those awful peg charts to discipline children for behaviours that may be beyond their control. She was constantly yelling at the kids. We'd hear kids crying in the room while waiting to collect at the end of the day. My child's self-esteem took a serious dive and she was full of negative self-talk by the end of that year … We were lucky to have an amazing teacher in year 2 who was the polar opposite, possibly ADHD herself, who just gets neurodivergent kids. She helped rebuild my child's belief in herself in the classroom, helped her learn strategies to work with her magical brain and sensory issues so she could complete her work in a timely manner.
4.118Ms Louise Brown, ADHD researcher and advocate with lived and family experience of ADHD, asserted that management strategies currently used in some schools were causing further harm:
Using rewards and punishment as a means of trying to control a child with ADHD and ensure they're compliant is absolutely inappropriate and harmful … These practices also cause immense psychological damage and increase the chance that they will go on to develop significant mental health issues.
Funding supports
4.119As outlined in Chapter 1, the Disability Discrimination Act 1992 and the DisabilityStandards for Education 2005, are designed to 'ensure that [all] students with disability can access and participate in education on the same basis as other students'
4.120While there are supports available through schools the committee heard that there appears to be some misinformation about the Students-with-disability Student Resource Standard (SRS) loading and how it is being administered by schools.
4.121The Department of Education confirmed that a formal diagnosis of ADHD is not required for schools to access funding; rather, it is 'about the teacher making a practical assessment of need within the classroom environment, so it's based on what they identify in terms of the sorts of supports that would be required for the child'.
4.122However, the committee was told that sometimes schools may push parents to obtain a formal diagnosis of ADHD for their children to access the funding, and schools were not always proactive in seeking funding for their students.
4.123For example, Mary was unaware that schools should be proactive about seeking the Students-with-disability SRS loading after being advised by the treating psychiatrist that funds had to be 'released':
… if the school could've been proactive about it, that makes my blood boil. I've had numerous meetings. I know that the classes he was in had an EA, but it was always worded as, 'We've got funding because there are X many children in this class who have it.' I've spoken to other parents about it, and it's all about whether the funding has been there.
4.124Furthermore, the Department of Education confirmed that because funding is provided to schools, rather than allocated to a specific child, funding use is 'at state and territory discretion and school discretion'. However, 'the accountability is not always there' to ensure that training and support is made available to teachers, and that students with ADHD get the support they need.
4.125Some students have Individual Education Plans (IEPs) in place to support them, with individual schools accountable for meeting the goals in those plans, and state and territory governments responsible for their resourcing. Howeversubmitters advised that IEPs are not always well prepared or well implemented and do not always provide students with the support they need.
Support in out of home care
4.126Indigenous health organisations drew particular attention to the vulnerability of children with ADHD in out of home care. Children in out of home care are already at risk—with poorer educational, health, and mental health outcomes—and have higher rates of ADHD. Moreover, First Nations children are 11 times more likely to be in out-of-home care than non-First Nations children. TheClinical practice guideline identifies these children as a specific 'high risk group'.
4.127Mr Graham Menzies from the Multicultural Disability Advocacy Association agreed, saying:
I think it is a vulnerable cohort. It would have lots of comorbidities, not just undiagnosed ADHD. Access to services certainly is limited. Often GPs won't get the diagnosis of ADHD or other more complex comorbidities, such as conduct disorder or oppositional defiant disorder. They'll send them on to a psychiatrist, which is cost prohibitive.
4.128There was also evidence that children in out of home care, and First Nations children in particular, have greater difficulty accessing supports for ADHD, including appropriate medication. NACCHO told the committee that off-label use of medications to support ADHD requires approval from the Departmentof Child Safety (in Queensland), significantly delaying treatment.
Supporting transition from childhood to adulthood
4.129Numerous witnesses and submitters highlighted the challenges for teenagers with ADHD as they move into adulthood, including the lack of services for older teenagers. The Institute for Urban Indigenous Health noted that this is the time period when First Nations children first start to fall through the cracks, while Ms Brbich observed that a lack of services can lead to self-medication and risk taking behaviours:
There is a huge gap between the 16- to 18-year-olds, where no-one really wants to look after them in that age group. They may have been diagnosed with a paediatrician up until the age of 16 years. The paediatrician will then say, 'You'll need to find a psychiatrist now.' Generally the psychiatrist won't take someone until they are 18 years old. We have that transition age. It is a very vulnerable period of time for young people. We can find that they can go off finding solutions to their own problems in ways that are not recognised as being very healthy for them. They can go down the road of self-medication. They end up getting into trouble in that age group. So it is really important that there is a connection for the 16- to 18-year-olds, because there's no medical professional.
4.130Furthermore, submitters identified the discontinuity in care that occurs when young people turn 18 years (or 25 years in some cases), when young people under a paediatrician or child psychiatrist must transition to adult services, which can be very confusing and very costly at a time when they do not have much money. The committee was advised that in transition, there is a lack of collaboration and information sharing between healthcare professionals, and access to medications can become 'nightmarishly difficult'. The Australian College of Mental Health Nurses noted:
Paediatricians and Child Psychiatrist who manage child and adolescent client's ADHD treatment must discontinue service once the individual turns 18 years old, although ADHD continues to be a disabling condition beyond this age. Many 18+ year old's must undergo re-assessment annually to be able to continue treatment.
4.131Lack of adult services in the public health system means that young people with ADHD frequently go from having a paediatrician overseeing their care, to nothing. As Dr Silva said 'I certainly feel, as a paediatrician, we look after these children—we really look after them—and we love them. We get to know the whole family, and then they just drop off the cliff, which is just so wrong'.
4.132One parent wrote of the struggles with her child transitioning through care:
It took two years to find a psychiatrist to take on my oldest child when transitioning from child to adult services. This was extremely stressful for the family not knowing if he would have continuity of medication supply at a critical time in transitioning from school into tertiary education and the workplace.
4.133People with ADHD called for improvements to service transition and suggested more information needs to be made available to young people. The committee was told that during this transition period a shared model of care, which can be adapted to the needs of the young person, is particularly beneficial.
4.134The previous three chapters have considered the impacts of ADHD on people with ADHD and their families, including the challenges they face obtaining assessment and medical diagnosis of ADHD, and appropriate support. The next chapter looks at areas where improvements could be made to enable people with ADHD to live their 'best life'.