Chapter 5Areas for improvement in ADHD diagnosis and support
5.1The preceding three chapters have considered a range of impacts, challenges and barriers experienced by people with attention deficit hyperactivity disorder (ADHD) when trying to obtain assessment and diagnosis, as well as support services and treatment.
5.2This chapter considers areas where improvements could be made to help 'improve the diagnostic and treatment processes for people with ADHD to support and optimise their wellbeing', and provide more 'timely, equitable and compassionate access to care for people with ADHD'. As one witness hoped:
What I wish for is comprehensive, multifaceted support that helps me and other adults with ADHD manage their symptoms in all areas of our lives‑personalised support that offers practical and effective strategies that are tried and tested ...
5.3Some of the areas for improvement discussed below relate specifically to ADHD diagnosis and assessment, or to treatment and support, while other measures are directed at improving the health ecosystem more broadly.
The need for a national approach
5.4The committee heard that ADHD is a significant health issue affecting thousands of Australians, and received support from submitters for a more cohesive, nation‑wide approach to helping people with ADHD. MrPaulSchwerdt from the Canberra and Queanbeyan ADHD Support Group emphasised that:
… failure to responsibly address ADHD is a significant national health issue. It increases the already high risk of intergenerational harm, with consequential impacts not only on community health, social wellbeing and productivity but ultimately the national economy.
5.5WA Health concurred, writing:
… it is important that at a national level there is greater recognition of ADHD as a public health problem, given the prevalence in children; the fact that it is the most common neurodevelopmental disorder overall in children according to the second Australian survey on child and adolescent mental health; it persists throughout life with the resulting social and economic costs.
Better coordination and integration
5.6Submitters advised the committee that there needs to be better collaboration and integration between levels of government to improve equity of access to ADHD care, particularly where there is an intersection between federal and state responsibilities:
One of the issues that people have, particularly around ADHD, is the lack of interconnection between state and federal governments and local governments, the lack of interconnection between different departments. This is particularly true of people who have any sort of neurodevelopmental disorders, as well as other people with disabilities. It's the fact that, every time you get bumped to another department, you've got to begin that whole story again.
5.7Healthcare professionals agreed, highlighting that the Australian Government could play a greater coordinating role. WA Health wrote:
While the practical aspects of assessment, management and treatment are managed at a local level and are subject to state regulatory laws, policies and procedures, much can be influenced and facilitated at a federal level, e.g. university places; competency and training in particular specialist areas, improved MBS [Medicare Benefits Schedule] arrangements for multidisciplinary and shared care. The Commonwealth should play a greater role in coordinating support for Australians who have been diagnosed with ADHD.
5.8Likewise, the Australian Association of Psychologists Inc. (AAPi) noted that existing approaches could be improved, stating:
… there are existing frameworks for collaboration between different levels of government, there is room for improvement in terms of consistency and coordination. Efforts to enhance communication, share best practices, and streamline service delivery can help ensure a more cohesive approach to meeting the needs of people with ADHD at all life stages.
5.9The committee also heard that coordination across services—health, disability and education—needs to be improved to ensure that people with ADHD receive holistic, rather than fragmented, care. The Central and Eastern Sydney Primary Health Network suggested the Australian Government is well-placed to play a leadership role:
The service fragmentation is real and widely acknowledged and efforts at resolution must be revitalised as a matter of priority. Incentives that reward collaborative efforts at helping bridge the silos between health, disability, and education should be provided. Given that the Commonwealth is a major policy maker and funder of these services it has a key role to play.
5.10WA Health advised that better collaboration and integration would help address the current inequities in access to care for people with ADHD, in which 'those who have the financial means can access private assessment and treatment, while those unable to afford private care, join long waitlists or remain undiagnosed and unsupported'.
Policy and service co-design
5.11Submitters also observed that there are opportunities to involve a diversity of people with ADHD in the co-design of policies and services that impact them. It was argued that this approach would improve understanding and knowledge of ADHD, and, most importantly, better meet the needs of people with ADHD.
5.12Building on this, the National Aboriginal Community Controlled Health Organisation (NACCHO) drew attention to the Government's renewed commitment to Closing the Gap through implementation of Priority Reforms, and how this might apply to improving ADHD services for First Nations people. This includes four priority areas which focus on a more empowering approach involving First Nations peoples, including through:
shared decision-making with governments;
Aboriginal and Torres Strait Islander community-controlled services;
improved and more transparent engagements and partnerships with First Nations peoples; and
shared access to information to inform local decision-making.
National ADHD framework and action plan
5.13Evidence to the inquiry was in support of a national ADHD framework and action plan with robust evaluation, to drive nationally consistent approaches to ADHD and improve outcomes, with the Royal Australasian College of Physicians (RACP) advising:
We need a properly funded project to develop a national framework for a new model of care, with common components and principles and a strong evaluation of outcomes, including waiting times, symptom control, child function, family function and cost-effectiveness.
5.14The Australian ADHD Professionals Association (AADPA) also advocated for a national approach which integrated with existing policies and initiatives, such as the National Mental Health Policy. The AADPA recommended that any strategy include:
… a clear set of priorities and actions for improving support and services for individuals with ADHD. This would require close communication and cooperation between the Commonwealth, state and local government services to ensure that services are delivered effectively and efficiently to stop people with ADHD from falling through the gaps.
5.15Orygen and other witnesses supported AADPA's Australian Evidence-Based Clinical Practice Guideline For Attention Deficit Hyperactivity Disorder (ADHD) (Clinical practice guideline), and called for the federal government to support its implementation through a national action plan.
5.16Orygen submitted that an action plan would 'facilitate cooperation between government departments, including those responsible for Health, Education, Employment, Justice and Welfare, with a flow on impact on those working within those sectors'. It identified what it considered priority actions:
steps to improve workforce awareness and confidence in screening for ADHD
set out a shared care model and identify roles suited to providing support in the lead-up to and following a diagnosis
a timetabled implementation plan for the Australian evidence-based Clinical practice guideline for Attention Deficit Hyperactivity Disorder.
More accessible public health services
5.17Evidence to the inquiry indicated there are insufficient public health services to ensure that people with ADHD can receive the information, care and support that they need.
5.18A range of submitters, including people with ADHD, the RoyalAustralian and New Zealand College of Psychiatrists (RANZCP), the Royal Australian College of General Practitioners (RACGP), the AADPA, the ADHD Foundation and ADHD Australia, called for ADHD services to be available to adults through the public health system, with improved access to services for children. It was argued that this would partly address the unmet demand for services, make access more equitable and improve outcomes for people with ADHD, especially those on low incomes.
5.19The RANZCP called for additional funding, including for the integration of assessment and treatment of ADHD into the core public mental health service business model. Alternatively, submitters suggested that innovative care solutions could be provided through Primary Health Networks (PHNs) and shared models of care to improve access. These are discussed later in the chapter.
5.20Edward was passionate in his advocacy for better public health policy and services, stating:
We should have one unified and united public health policy and, I believe, function. I don't care who pays for it, but I want to ensure that disenfranchised populations are not fragmented into smaller populations, reducing their voice in local areas.
5.21As pointed out by Mr Schwerdt, people are being forced to rely on the private system, even where public services are available, because the public system is 'overwhelmed'.
5.22The remainder of this chapter considers other ways in which public health services could be made more accessible, including through increased funding, shared models of care, and addressing workforce shortages.
Expanding models of care
5.23Several submitters to the inquiry drew attention to the limited number of specialists who are available to diagnose ADHD and prescribe stimulants, and wider health workforce shortages which are contributing to higher costs and longer wait times for people seeking an ADHD assessment and diagnosis.
5.24The committee received wide‑ranging evidence suggesting that another way of addressing workforce shortages was to expand models of care for people with ADHD. Submitters suggested that this would improve access to diagnosis and support, improve holistic care, and reduce the costs of care for people with ADHD. Most submitters supported expanded models of care, although varying evidence was received on which professional group/s should be able to diagnose and oversee patients with ADHD.
Review who can assess and diagnose ADHD
5.25The AADPA contrasted Australia's current model of care—with its narrow ADHD assessment channels—with arrangements overseas:
In Australia most ADHD assessments are conducted by paediatricians, psychiatrists and psychologists. However, in many other countries such as Canada and the United Kingdom, general practitioners and nurses make significant contributions to the assessment processes.
In these models of care, GPs [general practitioners] and nurses work alongside psychiatrists, paediatricians and psychologists. Nurses are trained to gather information required for assessment and monitoring of treatment and work in collaboration with senior medical staff to conduct the assessments.
5.26The AADPA called for the 'development of models, that allow GPs and nurses an extended role in the assessment and management of ADHD', stating that 'it is unrealistic to think that there will ever be enough secondary care medical practitioners to adequately manage the demand for ADHD assessment and ongoing management'.
5.27The Institute for Urban Indigenous Health likewise called for an increase in the range of health professionals who are permitted to diagnose and initiate pharmacological treatment ADHD, in conjunction with appropriate training.
5.28Lifespan Community ADHD Clinic were also in support of a greater role for GPs to reduce the reliance on specialists. The Clinic argued that:
Shared care is not the answer if it means that specialist appointments simply reduce from 6-monthly to 12-monthly because there will still be insufficient specialist clinic time to meet the need for diagnosis or ongoing treatment. GPs are likely to do a much better job of managing ADHD if they have more training and full responsibility, rather than having to defer to the specialist. There is also the additional workload for the GP to report back to the specialist.
5.29RACP supported expanded and shared models of care but strongly advocated for assessment and diagnosis to remain the role of paediatricians and other trained specialists with expert training, such as psychiatrists.
5.30The RANZCP also advocated for psychiatrists to remain in a position of clinical leadership within a multidisciplinary team, advising that they have a 'unique and comprehensive understanding of the bio-psycho-social assessment and treatment of ADHD' and other, potentially coexisting conditions.
5.31The complexities of ADHD assessment and diagnosis, in particular in children and/or where there are comorbidities, was acknowledged by WA Health, which wrote:
ADHD is a complex neurodevelopmental issue with significant comorbidities, including crossover into autism spectrum related disorders; language impairment; anxiety and depression; and obsessional, defiance and conduct related issues. There are significant psychosocial impacts that also need to be considered and a differential diagnosis takes time. Onoccasions diagnosis requires multiple assessments.
Without adequate training for diagnosis and management, there is a strong risk of comorbidity and complexity being missed and inappropriate treatment regimens that may have a significant impact on the child and family.
Implementing shared and multidisciplinary team care
5.32RACP suggested that innovative models of care with paediatricians and psychiatrists, working with and mentoring primary health care professionals, would 'increase efficiency and reduce waiting times for ADHD assessments', while improving access to mental health services after diagnosis.
5.33WA Health advised that it was supportive of shared models of care, with diagnosis under a trained and experienced clinician—particularly for children who are still developing and where there may be developmental and behavioural concerns and other co‑occurring conditions. WA Health argued that ADHD diagnosis should rest with:
… a very experienced paediatrician or someone with clear evidence of training. That shouldn't be just a few hours, because these things are complex, and labelling or diagnosing appropriately is something we have to do carefully, and there are risks with doing that inappropriately. I think I would say that, from our perspective of a service, we're very supportive of shared care models and co-prescribing, providing there are appropriate supports and access to a consulting paediatrician for discussions. I think integrated models of care and integrated model hubs are very important.
5.34The AADPA advised the committee that it is currently involved in 'developing several models of care trials between specialists and GPs, particularly in regional areas', and recommended that 'Australia work towards expanding the professionals involved with diagnosing ADHD'. The AADPA maintained that multidisciplinary models have been 'shown to deliver improved overall care', as well as increasing access and reducing waiting times.
5.35Dr Sarahn Lovett also recommended, based on her experience as clinical lead of a shared care program, the inclusion of an ADHD Care Coordinator as 'an integral part to all shared care models to act as a point of contact for all key stake holders to ensure if help is needed it can be actioned appropriately'. The person in this role would coordinate appointments and liaise with families, GPs and paediatricians to ensure the best care possible.
5.36AAPi suggested that access to ADHD healthcare services could be addressed by permitting 'a psychologist assessment, paired with a full physical review by a client's GP be sufficient to start a trial of stimulant medication where there are no other complicating medical or psychiatric factors'. AAPi noted that this would help make services more available, given the psychologist profession is much larger, with over 46 000 psychologists compared with around 3700 psychiatrists and noting that 85 per cent of paediatricians practice in metropolitan areas, leaving rural, regional and remote areas largely unserved under the current model.
5.37It was not only healthcare professionals who called for a greater role for primary health care professionals in ADHD assessment and diagnosis. The Canberra and Queanbeyan ADHD Support Group also recommended better investment in GPs, and reinstatement of mental health nurses, in coordination with PHNs and improved professional development, to bring ADHD 'back into primary health care'.
5.38However, the committee heard that there was competition between healthcare professionals, and some resistant to shared models of care. The Department of Health and Aged Care acknowledged:
… there's still some work we need to do with the medical colleges who actually set the professional standards and, particularly for diagnosis and treatment, understanding across the profession.
5.39Ms Louise Brown, ADHD advocate, researcher, and a person with lived and family experience of ADHD was frank in her assessment:
But you're going to find that, amongst the clinical practitioners out there, everybody has a different opinion. I might be shot down for saying this, but everybody, whatever clinical seats they sit in - whether they're a psychologist or a psychiatrist et cetera - thinks theirs is the best and most important and most appropriate and does the best service, so it's very hard to work out what actually is best.
5.40The Health Care Consumers' Association noted resistance to changes in the current model, and in its experience found that:
… a lot of psychiatrists are resistant to the shared care model with GPs where that is available. People have trouble getting their psychiatrists to provide approval for their GPs to provide those medications in an ongoing way and share their care.
5.41The Australian College of Mental Health Nurses also advised that addressing the significant knowledge deficit and cultural change may be required to enable different models of care across a wider range of health professionals:
There is a lot of pushback, I think, from a lot of groups that are not very happy about nurse practitioners prescribing in primary care. There is a lot of control over nurse practitioners' scope of practice in public mental health services. Just last week I had a very senior GP who trains on all of the mental health treatment plans across Australia say that nurse practitioners are fragmenting care. But I don't believe they really understand and know the scope of practice. There has been a lot of research on nurse practitioner safety and satisfaction. It rates very highly-in fact, often much higher than medical practitioners.
An expanded role for GPs
5.42Health care professionals, including the RACGP and WA Health, recognised the critical role of GPs, including as a first point of contact for many people with ADHD, and supported their ongoing role in managing and coordinating care.
5.43The RACGP advised that 78 per cent of GPs surveyed in 2023 reported a 'substantial increase in the number of patient inquiries about referrals for ADHD diagnosis in the previous 12 months'. It supported a greater role for GPs in guiding the assessment and diagnosis of ADHD in order to make services more accessible, noting that the Clinical practice guideline plays an essential role in supporting GPs who are interested in taking on a larger role.
5.44The Australian Adult ADHD Interest Group envisaged a multidisciplinary community of practice model of shared care, comprised of a centralised ADHD‑trained GP or alternative lead clinician who could prescribe ADHD medications. The GP would coordinate care and refer outwards as needed to nurse practitioners and mental health professionals operating in the community of practice, such as psychologists, counsellors, ADHD coaches and peer support groups as required. These GPs would also be able to refer on complex cases to specialised clinicians where necessary.
5.45Dr Roger Paterson, Vice President of the AADPA, acknowledged that in his experience the move to shared models of care has commenced around Australia:
GPs are getting more and more involved. Not every GP will want to get involved in that coprescribing; some GPs don't like stimulant medications for various reasons, and they will say, 'No, I'm not getting involved.' Butthat will free things up.
5.46Lifespan Community ADHD Clinic, which has been involved in a pilot study of integrated care for ADHD involving GPs (see Box 5.1), submitted:
There are many highly skilled GPs who are extremely frustrated that they are not permitted to treat their desperate patients with ADHD. In fact ADHD is much more suited to GP care than specialist care for the following reasons:
GPs know their patients and their families and are well placed to recognize transgenerational ADHD and intervene early before the development of chronic comorbid mental health conditions that frequently mask the underlying ADHD.
Holistic care is integral to general practice, while specialists who are overwhelmed by referrals of patients with ADHD may focus mainly on medication as this is the main treatment bottleneck.
Box 5.1 Integrated care at Lifespan Community ADHD Clinic In their submission, Lifespan Community ADHD Clinic detailed a new model of integrated care for ADHD being piloted in Western Sydney. The doctors involved highlighted that they 'believe that treatment for ADHD should be provided in the public sector and in primary care'. Features of the pilot: There are a number of aspects to the pilot, including: training of GPs alongside experienced clinicians—GPs train with experienced clinicians at the clinic and can then treat participants in general practice, including diagnosing and treating ADHD, with the same prescribing rights as psychiatrists and paediatricians. more holistic care—from GPs who know patients and their patient's families; specific NSW Ministry of Health Pharmaceuticals Regulatory Unit permissions for trained GPs to prescribe ADHD medications, as other designated prescribers, for the course of the pilot. Results Lifespan Community ADHD Clinic advised that through this model the GPs have access to the clinic for more complex patients, peer support and ongoing education, providing better continuity of care into adulthood for patients. One doctor wrote: 'feedback from the local GPs has been very positive and we are already receiving referrals. We have also had positive feedback from 2 families who have already been seen, expressing gratitude for accessibility to assessment in our local area and prompt availability of appointments, and praising [the GP involved] for her skill and expertise'. |
5.47The Institute for Urban Indigenous Health (IUIH) also saw an increased role for GPs, through a multidisciplinary and collaborative approach, advising that:
… removing the requirement for ongoing specialist supervision for adults and replacing it with "access to periodic review if deemed necessary by the client or treating GP" may remove some access barriers … [and that] many of the IUIH Network's GPs see themselves as being able to play a vital part in maintaining continuity of ADHD care for IUIH patients.
5.48Dr Norman Zimmerman drew attention to the unwitting impacts where a psychiatrist is not available to complete an ADHD review, and how GPs could step into this role:
… once medication has been optimized and stabilized it could be continued long term by GPs without mandated periodic psychiatric review … These reviews tie up psychiatrists' time which might be better used to see new patients. GPs could always elect to refer patients back for a review if needed. A nasty barrier to ongoing treatment is when the previous psychiatrist is unavailable for a mandated review and the GP is unable to legally continue treatment.
5.49Consumers also expressed their support for an increased role for GPs, suggesting that this could reduce both the time and cost of receiving help. TheHealth Care Consumers' Association observed that:
Consumers see GPs as suitable providers due to their continuity of care and longitudinal view of patients – the ability to form a more wholistic view of the individual and their challenges over time and to provide ongoing, readily accessible support …
'If they are their regular GP they will understand that person far better than a specialist they see once every six months.'
5.50Jacinda suggested to the committee:
If the government was able to help open the scope of practitioners and their access to ADHD assessment there would be a huge burden lifted off of current practicing psychiatrists. If the scope of ADHD assessment was broadened then current psychiatrists would be able to focus more on bigger cases and supporting others (without ADHD) in a more beneficial manner.
5.51However, there was wide agreement that GPs would need to be supported through 'appropriate education and training' to ensure they meet the necessary competencies.
5.52WA Health supported the Clinical practice guideline recommendation for the upskilling of GPs, paediatricians and psychiatrists in the identification, diagnosis and treatment of people with ADHD, but noted there were several obstacles to its implementation in the short to medium term:
(a)current [state and territory] stimulant regulations
(b)availability of accredited professional development / training packages
(c)workforce challenges
(d)the Australian Government Medicare Benefit Schedule (MBS) funding arrangements.
New and 'best practice' models of care
5.53Through the inquiry, the committee was told that a range of alternative ADHD care models have been trialled, with a view to improving services and outcomes for patients. The committee also sought advice from key stakeholders about what a 'best practice' pathway of ADHD assessment, diagnosis, treatment and support might look like.
5.54Some of the alternative care models explained to the committee included:
shared care and fast-track diagnosis for children—the WA Government has received a pilot proposal for a shared care model in which four GP practices work with a paediatrician to provide a fast-track diagnostic pathway for children with ADHD, as well as ongoing management. The aim of the project is to improve the 'timely, efficient and accessible assessment, diagnosis and treatment' of ADHD, as well as upskill GPs. Under the pilot, specific assessment information will be collected by the GP and sent to the paediatrician who then provides a formal diagnosis and medication if required. The GP will then conduct follow‑up appointments and manage patient care, referring them to the paediatrician if needed. GPs are supported with additional training and funding.
Dr Leech, who was involved in the initial proof of concept, explained to the committee 'we've basically gone forward and put to the test the collaborative approach to diagnosis of ADHD in children. We've run this through with a number of patients now, with excellent feedback'.
telehealth shared care—in Geelong, Victoria, Reflect Health Telepsychiatry are running a pilot in which interested GPs have upskilled themselves in the diagnosis and management of ADHD. In collaboration with a psychiatrist, the GPs complete much of the assessment and management of patients, with a psychiatrist prescribing medications as required.
clinical nurse specialist supported pathway—the WA Metropolitan Child Development Service is 'working towards a shared care model using clinical and other specialists to support paediatricians'. This includes moves towards 'a clinical nurse specialist supported ADHD diagnostic assessment pathway, which is aimed at creating efficiencies in the system and allow families more timely access to information and support after referral'. This would also enable clinical nurse specialists to support paediatricians in providing medication reviews.
Proposed 'best practice' pathways
5.55The committee sought advice from specialist health and community organisations about what a 'best practice' approach might look like, for all stages of the ADHD assessment and treatment process—from initial assessment and diagnosis, through to medication (as required) and other treatment, as well as ongoing support and treatment plans.
5.56The committee received a range of responses from a number of stakeholders. Common themes included more holistic care pathways, with shared care models to provide more wrap around services and supports for people with ADHD, with levels of support able to be differentiated depending on the needs of the individual.
5.57Flow diagrams for proposed 'best practice' pathways are available in Appendix3.
Improving education, training and awareness
5.58Numerous participants in the inquiry highlighted the importance of education, training and awareness to improve the understanding of ADHD—in the public sphere, for families and people with ADHD, for employers, for education, welfare and justice workers, and in particular for healthcare professionals.
5.59It was made clear to the committee that there is significant stigma associated with ADHD, and that ADHD is not generally well understood. This has resulted in people not receiving the care and support that they need, with serious and in some cases life-long impacts on their health, families and relationships, education, employment and income.
5.60Specific issues around the need to increase the capacity and improve the training of the healthcare workforce are discussed later in this report.
Information resources for people with ADHD and their families
5.61Numerous submitters called for clearer, more accessible, reliable, published information about ADHD, including the steps needed to obtain a diagnosis and support, with an explanation of the implications of each step, and the supports that are available to people with ADHD.
5.62One submitter wrote:
In the future, I would like to see Australian resources developed. Theseresources should be made readily available to those diagnosed with ADHD. I would like these resources to be publicly endorsed by the Australian Department of Health and/or the Royal Australian & New Zealand College of Psychiatrists. This endorsement will allow those with the condition to trust what they read. It will also allow everyone to have access to current and reliable information.
5.63Jackson also explained the impediments arising from a lack of reliable, public information about ADHD:
This has been the greatest challenge. Aside from unreliable social media groups, and cottage industry style support groups, there is a dearth of information, content, community, and support for those striving to rise above their condition and learn later in life the techniques and life skills that I imagine young diagnosed children are provided.
5.64ADHD Australia highlighted the need for 'evidence-based resources and training' for people with ADHD and their families and carers, particularly to help them navigate different supports and systems. It pointed out the difficulties for families—who may have multiple people with ADHD—when they cannot access appropriate diagnosis and treatment, impacting on their ability to work and earn money, and create a supportive environment. The ADHD Foundation further explained that this information could be delivered through ADHD community organisations, with Mr Matthew Tice recommending:
… that the Australian parliament … improve access to information, advice, resources and peer support for people living with ADHD and their families and carers by funding ADHD community organisations.
5.65Indigenous health and advocacy organisations also highlighted the need for 'culturally responsive' educational and information resources, developed in collaboration with First Nations communities and organisations.
5.66Ms Louise Brown, ADHD advocate, researcher and a person with lived experience of ADHD explained that she is developing and piloting an ADHD education program for parents, which 'aims to empower them to commence the process of fostering the development of their children as independent, healthy, and functioning adults with ADHD in their prepubescent years—the first of its kind'.
5.67The Multicultural Disability Advocacy Association highlighted the value of easily readable and visual information, as well as support services designed for CALD communities. It noted that 'often people from CALD communities will first turn to their own community to seek support via community leaders, faith leaders and people like that'. The association suggested that grassroots support could help reduce stigma and shame associated with ADHD and disability generally.
5.68The committee also heard that service navigation support is vitally important for people with ADHD, given the complexities of the medical systems, the inconsistent pathways and lack of reliable information, and the executive function and regulation challenges people with ADHD experience. Consumers of Mental Health WA highlighted that 'giving people support to make their own decisions and giving people information to access the supports they might need is something that is very useful'.
5.69The ADHD Foundation told the committee that a range of other 'professionals' are exploitatively offering ADHD diagnostic services. It suggested that greater public awareness of who can diagnose ADHD is needed to ensure that people are appropriately informed when seeking professional advice. Othersubmitters identified a need to 'create a centralised register of ADHD practitioners with accreditation and continuing education standards, that is publicly accessible to people seeking referral (e.g. showing availability)' to streamline access to care.
5.70Luke, a person with ADHD who wrote of his challenges finding information and navigating 'the system', wanted ADHD resources and support be improved, including as follows:
1. Develop and distribute comprehensive pamphlets or guides that outline the various steps and resources available for individuals managing ADHD. These materials should provide clear instructions on navigating the S8 process, finding competent healthcare providers, and identifying support networks.
2. Establish a centralised hub or platform dedicated to providing information, resources, and support for individuals with ADHD. This hub could offer guidance on managing the condition, accessing appropriate treatments, and connecting with others who share similar experiences.
5.71Other submitters were also supportive of a centralised platform or portal for reliable information about ADHD, how to access assessment and diagnosis, and where to go for support.
Improving access to peer support
5.72Submitters called for more assistance to be provided to support groups, including peer support groups—both online and in person—with people with ADHD highlighting the importance of connecting with their community.
5.73Yellow Ladybugs told the committee about the importance of this community to people with ADHD. Mrs Katie Koullas, Chief Executive, said:
… access to peers and neuro-kin, how much of a protective barrier that is and how important we need to invest in this space. Once you understand your own mind, there are protective barriers around saying, ‘Okay, it's not just me, and the way I think is amazing; here's another person who thinks like this.’
5.74Mrs Natasha Staheli, Policy and Advocacy Director for Yellow Ladybugs told the committee that:
Our focus is still very much on our young people. For them, access to their identity is so important. Whether they are diagnosed at five, 10 or 15 years old, they are going through a process. Knowing that they're not alone and knowing that there are other people just like them out there is an incredibly powerful factor.
5.75Consumers of Mental Health WA further elaborated:
Establishing a well-regarded peer-worker support group would provide a space for education and day-to-day support for consumers, some of whom are dissatisfied with the inconsistent and sensationalised groups of influencers who currently serve as the dominant locus for free-of-charge community support.
Another benefit of developing support networks around peer-workers will be to offer a less clinically-orientated perspective on how to cope with the everyday challenges facing consumers with ADHD. As one consumer wrote:
'Often the support available is very medical-model and pathologising ... They aren't holistic at all and subscribe to the idea that you have a brain problem.'
5.76The Australian Adult ADHD Interest Group stressed the value of peer support, highlighting the number of ADHD coaches who are setting up community support groups within their clients. It suggested that a 'buddy' volunteer with lived experience could help provide much needed support to help people at the start of their ADHD journey navigate 'the system'.
Improving public awareness and understanding
5.77The committee heard that public education and awareness of ADHD must be improved in to reduce the stigma associated with diagnosis, support and use of medications. For example, Ms Nirelle Tolstoshev from the ADHD Foundation highlighted how a public awareness could operate, saying:
I think in any public awareness campaign the government could play a key role. There are more entrepreneurs, successful people and really high achievers who have ADHD. I think we can change the narrative to help people understand that there are some strengths with ADHD as well.
5.78Mr Matthew Tice from ADHD Australia agreed:
Public awareness is a key issue … I think the first is that the awareness of our public silos, if I can use that term, needs to be upgraded significantly. Clinicians, professionals and justice, educators, the government itself, even parents and carers and the wider community, have their own unique needs in terms of understanding ADHD in those domains. I think the big at least medium to long-term opportunity is to create a much more patient or individual-centric view that brings together this ecosystem of various providers in these domains to come together to support individuals and their families and carers with ADHD. Really, the stakeholder communication awareness and advocacy work that is required to work on both of these levels is very significant. We need to understand that this is a system problem and not just an education problem, a justice problem or a clinical problem. We need to work the entire ecosystem.
5.79WA Health suggested that awareness of ADHD, community acceptance and reduction of stigma could be improved through national public education, advising:
Public education campaigns for ADHD could help reduce stigma by raising awareness of the disorder and promoting understanding and acceptance. These campaigns could include information on the symptoms of ADHD, the impact of the disorder on individuals and families and evidence-based treatments for ADHD.
5.80Dr Sarahn Lovett echoed these views, submitting that a freely available, national ADHD education module for the community would help support people with ADHD, their children, friends and family members, employees and employers. Dr Lovett suggested that this module should be informed by people who have ADHD, as well as clinical evidence about best practice for ADHD care and management. Dr Lovett thought that such a module could be linked to a larger public health initiative, be endorsed by RACP, RANZCP, the RACGP and Australian Psychological Society, and be funded by the Department of Health and Aged Care.
5.81Yellow Ladybugs and Suicide Prevention Australia reaffirmed this approach, with the latter writing that such a campaign would help 'ensure that people presenting with ADHD symptoms are identified and receive treatment. An awareness campaign will also encourage and empower Australians with ADHD symptoms to advocate for themselves and seek diagnosis and treatment'.
5.82Foremind were supportive of improving public awareness and thought that it should be 'scoped, funded and delivered in partnership with respected mental health organisations'.
5.83One submitter suggested targeted public awareness campaigns to address lack of awareness across society:
Public awareness and understanding is poor. I’d like to see some kind of campaign (or several) increasing understanding:
for those who might have ADHD to help them realise that and find a path to diagnosis
for parents of children who might have ADHD to help them realise that and support their children through diagnosis
for family and friends, for teachers, employers, the public in general: you cannot see ADHD. That does not mean the person telling you they have it does not have it.
for health professionals: you cannot necessarily see ADHD either. Ifsomeone is reporting symptoms of ADHD and you are not qualified to assess or diagnose, refer and defer to someone who is, and support your patient through that process.
Increasing funding for ADHD services
5.84The Public Health Association of Australia recognised that many health and support services provided to people with ADHD are provided by state and territory governments and the private sector. However, it recognised that the Australian Government has responsibility for funding of services:
As a clearly recognized health condition, the primary responsibility for diagnosis and treatment lies with services provided by the GP and specialist health professions, funded by the resources of the Medicare system, and is thus a Commonwealth-level responsibility.
5.85Evidence presented to the committee clearly demonstrated that the high costs of services and medications were preventing people from seeking or continuing support for ADHD, with lifelong consequences for them, their families and Australian society.
5.86For example, the RANZCP argued that this should be addressed and advised the committee:
… it's very important for the government to invest and help with the recognition and treatment [of ADHD] as early as possible to prevent both the short term and long term complications of this condition. And also it improves overall well-being of individuals when we treat them on time'.
5.87Submitters suggested a range of funding measures to help reduce barriers for people with ADHD, including increased investment in the public health system (including the community-controlled health sector), Medicare and the Pharmaceutical Benefits Scheme (PBS), all discussed below.
Increase Medicare benefits
5.88In the preceding chapters the committee considered the high costs of health and support services to people with ADHD, coupled with low and declining rates of bulk billing, high out-of-pocket expenses, and lack of coverage for some services. People who are living with ADHD clearly expressed their support for higher patient rebates under Medicare to promote bulk billing and remove barriers to care.
5.89AAPi, ADHD Australia and the ADHD Foundation called for more funding for ADHD assessment and diagnosis services, with the latter stating that bulk billing would make services and treatment more accessible.
5.90The RANZCP called for the Medicare rebate for psychiatry services be increased to 100percent of the scheduled fee (increased from the current 85 per cent), noting that 'increasing the bulk-billing incentive to 100% (that of general practice) will improve the affordability of psychiatry services by increasing the number of bulk-billed patients'. It also called for bulk-billing incentives (such as means-testing) for psychiatry consultations for patients experiencing financial disadvantage to ensure people can access the health care they need.
5.91Healthcare professionals, including the RACGP recommended that patient rebates for Medicare-subsidised services provided by GPs be increased. Higher rebates would better cover the costs to GPs of providing services, and the RACGP suggested this would reduce costs for individual patients.
5.92The RACGP and other witnesses, suggested that rebates be increased for a range of items including longer consultations (to better support complex ADHD presentations), mental health, and team and multidisciplinary care. RACGP also argued for funding to support the time spent by GPs and other specialists consulting and discussing the needs of patients with complex care requirements.
Include coverage for shared care
5.93WA Health, amongst other witnesses, called for support from the Australian Government for changes to the Medicare Benefits Schedule (MBS) to enable co‑consultations between specialists and GPs. It noted that the MBS:
… does not currently allow for co-consult arrangements, collaboration and upskilling. This limits the financial viability of specialists in the private sector to work with GPs in the community to meet the needs of people with ADHD.
5.94Dr Simon Towler from WA Health noted that 'at the moment if two clinicians are involved only one receives a fee. The time involved here is significant'. Tohelp address this, WAHealth suggested that 'provision of fit-for-purpose, shared care and multidisciplinary support models funded under Medicare could improve much needed access to such services post ADHD assessment'
5.95The RANZCP advised that increases in MBS rebate items would also support psychiatrists engaging in multidisciplinary teams, and the development of connections with other health services, including through specific items for case discussions and conferences, and phone advice with healthcare professionals.
5.96The RANZCP advised that often two or more assessment sessions are needed to diagnose ADHD, especially for patients with complex needs. However, it indicated that patients are only eligible for one Medicare rebate. The RANZCP called for up to three instances to be allowed in a six-month period, 'in order to provide accurate assessment, confirmation of diagnosis, and/or review of prescribed medications'.
Increase coverage for allied health services
5.97The committee was informed that holistic care would be enabled through improved access to allied health services, including psychologists, occupational therapists, speech therapists and ADHD coaches. As noted by LifespanCommunity ADHD Clinic:
Most people with a diagnosis of ADHD require multimodal care which involves allied health input. This is rarely available in the public sector and represents a significant cost. Medicare provides for a limited number of allied health therapy sessions but these are generally insufficient and there may be a considerable gap payment.
5.98The RACGP also noted that costs are high, citing the Grattan Institute, which 'reported in 2021 only 56% of allied health services were bulk billed, and patients paid an average of $55 in out‑of‑pocket costs per appointment'.
5.99Further, complex presentations of ADHD often require more sophisticated care arrangements, including with input from allied health professionals.
5.100One submitter to the inquiry wrote:
Allied health disability supports are incredibly expensive. For example: $270per hour for capacity building psychology. $170 per hour for speech therapy. $170 per hour for occupational therapy (OT). These fees are out of reach of ordinary people when weekly or fortnightly therapy is needed. The Medicare rebate is difficult to obtain, often excludes disability (e.g. for psychology), and leaves an unaffordable gap.
5.101Another explained:
… My son has attended extensive OT, but even with the yearly health care plan from the GP, I cannot afford the sessions he needs. I also cannot afford for my child to attend psychology appointments with trained clinicians. All of these allied health services require extended government funding.
5.102Healthcare professionals agreed. RACP members 'provided feedback that there is a strong need for improved access to psychological support for people diagnosed with ADHD', with other submitters calling for better coverage of psychoeducation services under Medicare, including coaching, parenting training and carer training. The Australian Clinical Psychology Association also called for government funding for supports from allied health professionals where people with ADHD need assistance to improve social, educational, occupational, relationship and independence outcomes.
5.103There were calls for the ten mental health sessions subsidised under the MBS to be increased to 20 per annum, as they were temporarily during the initial COVID period. Ms Matilda Boseley told the committee of the impact this would have for people with ADHD:
The 10 sessions per year currently available under the mental health treatment plan aren't enough to even make a dent in the massive amount of trauma our society unwittingly inflicts on ADHD people. Even something as small as an ADHD diagnosis unlocking an additional 10 subsidised psychological sessions would make a huge difference in setting people up for happier, healthier and safer lives.
5.104The Australian Counselling Association called for counselling support services provided by a Registered Counsellor as part of a multidisciplinary team to be covered by the MBS. At present Registered Counsellors are not eligible to become MBS providers, limiting access to care. Likewise there were calls for ADHD coaches to be covered by Medicare.
5.105The RANZCP and AAPi recommended increased rebates for psychiatry trainees and provisional psychologists to improve service accessibility.
5.106Occupational Therapy Australia called for the introduction of Medicare item codes to allow for rebates on broader interventions and treatments by occupational therapists, over and above the limited scope of interventions under the Better Access initiative.
Nurse practitioners
5.107The Australian College of Nurse Practitioners and the Australian College of Mental Health Nurses sought improved Medicare coverage for some services provided by qualified nurse practitioners and mental health nurse practitioners. They warned that lack of coverage was preventing appropriately skilled nurse practitioners from offering comprehensive care, impacting access to services and care for people with ADHD, and resulting in higher out-of-pocket expenses for the public. Ms Sonia Miller from the Australian College of Mental Health Nurses remarked:
… for those that come and see me and don't have any other funding attached to them, that is the out-of-pocket expense, only because the rebate is so low. Nurse practitioners have a lower rebate than any other health professional in primary care. We even have a lower rebate than our colleagues, the credentialed mental health nurses, which doesn't really make sense.
5.108The Australian College of Mental Health Nurses also discussed the highly qualified and specialised practice of Nurse Practitioners—Mental Health, including their ability to assess and diagnose ADHD, provide clinical pathology, provide psychoeducation, and prescribe ADHD medication with a medical specialist letter. However, the College highlighted that this role needs to be better recognised, including by Medicare, to allow them 'provide advanced [ADHD] assessment, M[ental] H[ealth] monitoring and management', including through the Medicare Better Access initiative.
5.109As noted by the Australian College of Nurse Practitioners, creation of specific Medicare items would also enable work being done by nurse practitioners to be tracked and understood at a workforce level.
ADHD coaching
5.110There was mixed evidence about the efficacy of coaching support for people with ADHD, with some submitters concerned that some ADHD coaches may take advantage of a lack of regulation, while others advocated for easier access to subsidised coaching support.
5.111Ms Louise Brown argued that ADHD coaches were seen as a useful support, particularly in the workplace, 'because a lot of them have ADHD' and they understand people with ADHD and 'how to help them be their best self'. Another witness highlighted the value of coaching, writing that 'pills don't teach skills—coaching can help embed long term strategies that can decrease people's reliance on medication'.
5.112There were calls for qualified ADHD coaching sessions conducted by a healthcare professional, to be subsidised under Medicare, as an allied health service, as well as development of professionalisation and accreditation of ADHD coaches and professional standards for their services. There were similar calls for better access to peer support, as discussed earlier in this chapter.
Expanding the Pharmaceutical Benefits Scheme
5.113The inquiry’s evidence made clear that ADHD medication costs are high, or even prohibitive, for a large number of people with ADHD. The committee was told that changes to the PBS could help relieve stress and improve support for many:
Patients’ out-of-pocket ADHD medication costs in Australia in 2019 have been estimated at $26.6 m[illion] (noting that this estimate is limited to medications listed on the PBS).Given that ADHD is a lifelong diagnosis and that core ADHD medication costs tend to increase with age,PBS subsidy settings should be reconsidered with a view to ensuring that appropriate medications are supported for appropriate prescriptions at all stages of life.
5.114There were widespread calls for more medications to be subsidised by the PBS, and for age and dosage restrictions to be removed—in particular the restrictions requiring a childhood diagnosis of ADHD—to make medications more affordable and accessible.
5.115Nurse practitioners also called for changes to the PBS to reflect their specialist qualifications and expertise, as well as their authority to prescribe Schedule 8 medications in some states, with the Australian College of Nurse Practitioners recommending that 'Nurse practitioners should be granted the authority to prescribe these medications under the Pharmaceutical Benefits Scheme'.
5.116The Society of Hospital Pharmacists of Australia called for better review of medications available through the PBS, recommending that medications be added and removed as needed:
… we are moving into an era where we probably need to be more proactive in both evaluating new medicines to go onto the PBS, but also looking at the existing suite of medicines that are on there, and disinvesting from those that no longer add value, as well. Because it's not only to keep adding to the armamentarium; we also need to think about saying 'That drug is now 40 years old; it's old hat; we know that it doesn't work as well as other things; can we stop using that?'
Implementation of uniform state and territory prescribing regulations
5.117There were widespread calls from health professionals and people with lived experience of ADHD for improved access to ADHD medications. Submitters and witnesses thought that this could be addressed through changes to the PBS and shared models of care (as discussed above), necessitating changes to state and territory regulations and health policy.
5.118There was overwhelming support for the nationalisation or creation of uniform state and territory regulations for the prescribing of ADHD medications to ensure that care and support for people with ADHD is consistent and accessible, taking into account the movement of people and the use of telehealth consults.
5.119Noting that state and territory regulations are a matter for those jurisdictions, feedback from submitters indicated that nationalised or uniform regulations could address the following areas:
conditions around how stimulants can be prescribed;
removal of maximum dosages, and age access limitations on some medications;
freeing up of who can prescribe ADHD medications, with rights to be expanded to a wider range of appropriately trained healthcare professionals;
less restrictive co-prescribing arrangements;
extension of prescription validity time period, and across states and territory borders; and
clinician review requirements, including frequency.
5.120RACP advised:
The regulatory issues … should be addressed, with consistent rules across all states and territories describing the clinicians that are authorised to diagnose and prescribe stimulant medications for patients. This should include general practitioners.
5.121Changes such as these will make shared care models easier to implement—at present 'shared care models vary by jurisdiction because regulations on whether GPs can diagnose ADHD or initiate the prescription of stimulant medication, are different in different States and Territories'.
5.122It was also made clear to the committee that healthcare professionals are not always knowledgeable about or confident prescribing ADHD medications and there is a clear need for additional education and training to support better access to medications. This is discussed further in Chapter 7.
Creating flexible workplaces
5.123In previous chapters, the committee considered the impacts of ADHD on people's working life and the difficulties people have obtaining and staying in work, along with associated productivity impacts. The committee has especially noted the lack of flexibility and reasonable adjustments in workplaces—a finding also made by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
5.124Several witnesses highlighted that more information was needed to inform both people with ADHD and employers on rights and workplace protections related to accessing reasonable adjustments, and what reasonable adjustments could be put in place to help people with ADHD reach their potential in the workplace. Ms Josephine Root from the Consumers Health Forum of Australia explained:
For people with inattentive ADHD, the reasonable adjustments might be different from those for somebody who has a different form of ADHD or has a different disability. I think there is a lack of clarity about what reasonable adjustment actually means and how it can be put in place and what recourse there is for people if they think reasonable adjustment isn't being made … We know of people. I think we need to perhaps look at how the disability discrimination laws work and how we can encourage employers to see that reasonable adjustment actually can improve the workplace for everybody. It doesn't necessarily need to be a negative for everybody else.
We have talked to people who again … may not know what sort of reasonable adjustments they can ask for because these things haven't been talked about. It's often not until you know what you can ask for that you can actually ask for it. Unless you have a language to ask for it, unless they've seen it modelled elsewhere, unless you've been able to read about it somewhere, it's really hard to work out what sort of adjustments are available and whether they can work for you or not.
5.125As discussed elsewhere in this report, submitters also thought that a public awareness campaign and resources—provided by government or advocacy organisations—would help improve awareness amongst employers and help create more inclusive workplaces, including through reducing stigma, using language that is inclusive of people with ADHD, and access to ADHD coaches.
Providing funding for the ADHD community
5.126There was support for more government funding for consumer non-profit support organisations to help fill current information, advice and support gaps around ADHD. For example, ADHD Australia noted that:
The ADHD community is chronically underfunded. The majority of ADHD community organisations are run by passionate volunteers with limited time and funding. As a result, people living with ADHD and their families face challenges finding access to practical, up-to-date and evidence based information about ADHD in Australia.
5.127ADHD WA highlighted the important services that it, and similar organisations provide, particularly for people who are waiting to access an ADHD diagnosis:
What we hear from our members and from the community is that even at the point of diagnosis they're not provided with sufficient information of where to go from here. This is something that ADHD WA is also working on. The programs that have been developed, which we'd love to see subsidised by government, will support the child, the parent, the partner and the adult through their life span, keeping them engaged in community.
5.128ADHD Australia emphasised the importance of advocacy work undertaken by consumer organisations and the opportunities to work more loosely together:
In terms of doing that, I believe that technology can play a very significant role in bringing these organisations together. I think there is also an opportunity for more public voices from the government and leading individuals with ADHD to play a role there. I think there is a continued role for organisations like those represented today to continue our advocacy work but perhaps with more funding and research to enhance the amplification of the voice of the community.
5.129Witnesses also called for funding for the national ADHD Foundation Helpline, which is staffed by volunteer counsellors with lived ADHD and neurodiverse experience. The foundation predicts that annual enquiries to the helpline will exceed 70 000 over the next 12 months. MsDympnaBrbich suggested 'that some recommendations may take long-term planning whereas to fund the helpline is something the government could do straightaway'.
5.130Submitters and witnesses suggested that these and similar organisations could, in collaboration, address current support deficiencies through:
collaboration within and across sectors to support national system coordination;
providing more information about ADHD and assessment processes;
registers of available healthcare professionals, including those with lived experience;
funding of services and programs (for example early intervention, helplines);
awareness and education campaigns, including for the public, people with ADHD and their families, schools, workplaces;
providing information on how to access supports, including healthcare services, education and workplace accommodations and adjustments;
continued advocacy for people with ADHD; and
further researching ADHD.