The Senate Community Affairs References Committee report Assessment and support services for people with ADHD states
This report of the Senate Community Affairs References Committee inquiry into barriers to consistent, timely and best practice assessment of attention deficit hyperactivity disorder (ADHD) and support services for people with ADHD draws on 700 submissions, and the evidence of 79 witnesses attending three days of public hearings across Australia.
The committee thanks all those who made contributions to our deliberations. The committee has been moved by the personal experiences and openness of the hundreds of submitters and witnesses who have shared their ADHD experiences. It appreciates the time invested by the ADHD community and notes the ways the health, education, employment and justice systems have let people down.
Over one million—or an estimated one in 20—Australians have ADHD. The committee has heard the experiences of many people with ADHD who have not been able to access the healthcare and supports that they need. This has had lifelong impacts on them and their families, including on their self-esteem, health, relationships, education, employment and financial situation.
The committee notes that not all people with ADHD define their experience through medical models of understanding and acknowledges that understandings of ADHD are constantly evolving. The committee further acknowledges that identity in the ADHD community is a varied and deeply personal experience. People with ADHD may or may not identify with their diagnosis, as members of the disability community, or as neurodivergent people.
Over the course of the inquiry, the committee found that barriers to people with ADHD accessing assessment, diagnosis and support services include:
- Lack of services—limited availability and long wait times for healthcare professionals to diagnose, and provided medication and other supports to people with ADHD, lack of services in the public health system, especially for adults with ADHD and insufficient services in rural, regional and remote areas.
- High costs of services—including insufficient coverage under Medicare, the Pharmaceutical Benefits Scheme (PBS) and the National Insurance Disability Scheme (NDIS).
- Poor consumer experiences—caused by lack of reliable information about ADHD, overly bureaucratic processes, fragmented care, inconsistent prescribing regulations, and stigma and variable quality of healthcare associated with ADHD, as well as use of stimulants.
- Lack of supports in schools, out-of-home care and correctional facilities.
- Specific challenges for key groups including girls, women and gender-diverse people, First Nations peoples and people from culturally and linguistically diverse backgrounds.
Having considered the considerable and varied evidence provided, the committee is of the view that more can be done to remove barriers for people with ADHD so that they can receive the assessments, healthcare and support they need. The costs of the current system are too high, given the costs to the healthcare, education and justice systems, as well as to employers. However, above all these costs are the significant personal health, wellbeing and financial costs to people with ADHD and their families and carers.
Overwhelmingly, people with ADHD want more accessible support to help them thrive and reach their best potential—in their relationships, in their studies and in their work. The committee has made its recommendations to the Senate and looks forward to receiving the government response to the concerns raised during this inquiry.
Recommendations
1 The committee recommends the Australian Government considers funding and co-designing a National Framework for ADHD, together with people with ADHD as well as ADHD advocacy and community organisations.
2 The committee recommends the Australian Government consult with people with lived experience of ADHD, healthcare colleges and organisations to identify additional supports to improve access to ADHD healthcare and support. This should encompass reviewing bulk billing incentives to reduce out-of-pocket expenses for diagnosis and ongoing support, shared care models, telehealth, and improving access in rural, regional and remote areas.
3 The committee recommends the Australian Government review the Medicare Benefits Schedule with a view to improving the accessibility of assessment, diagnosis and support services for people with ADHD.
4 The committee recommends the Australian Government review the Pharmaceutical Benefits Scheme (PBS) to improve the safe and quality use of medications by people with ADHD. This review should give consideration to the requirements for a diagnosis to access some medications, age restrictions, dosage restrictions and the scope of practice for clinicians prescribing medications.
5 The committee recommends that the Commonwealth expedite the development of uniform prescribing rules to ensure consistency between state and territory jurisdictions, through the Ministerial Council on Health.
6 The committee recommends the Australian Government, in collaboration with people with ADHD and ADHD advocacy and community organisations, develop a dedicated government ADHD information portal.
7 The committee recommends the Australian Government implement, through the Department of Health and Aged Care, a neurodiversity-affirming public health campaign to shift social attitudes and stigma associated with ADHD and to improve public awareness and promote education.
8 The committee recommends the National Disability Insurance Agency improve the accessibility and quality of information around the eligibility of ADHD as a condition under the National Disability Insurance Scheme (NDIS).
9 The committee recommends that the Department of Social Services provide ongoing funding for disability advocacy organisations, including ADHD advocacy organisations, to support people with ADHD.
10 The committee recommends the Australian Government works to improve training on recognising and meeting the needs of ADHD people in a variety of settings, such as in education, institutional settings and the workplace, including considering setting minimum standards for neurodiversity training.
11 The committee recommends that the Australian Government work towards improving specialised health services in institutionalised settings, including for people with ADHD.
12 The committee recommends the Australian Government, through the current ‘Scope of practice review’ and in collaboration with healthcare colleges, develop pathways which could include an expansion of the range of healthcare professionals who are able to provide ADHD assessment and support services, particularly General Practitioners and Nurse Practitioners, and improve the skills of all healthcare professionals who interact with people with ADHD.
13 The committee recommends all levels of government consider investing in the implementation of the Australian ADHD Professionals Association’s Australian evidence-based clinical practice guideline for ADHD, along with funding to promote the guideline to healthcare professionals and healthcare policy-makers.
14 The committee recommends that the Australian Government consider investing in ADHD lived experience non-profit support, disability and advocacy organisations. Such funding would enable these organisations to provide community-based and targeted services to people with ADHD, such as an advice and support helplines, legal aid, financial counselling and assistance in finding assessment, treatment and support pathways.
15 The committee recommends the Australian Government support further research, through the Australian Government’s Medical Research Endowment Account (administered by the National Health and Medical Research Council) and the Medical Research Future Fund (administered by the Department of Health and Aged Care), to better understand ADHD, and ways to address stigma. The committee suggests that further research is needed into:
- support available to people with ADHD, including evidence-informed clinical care and peer support;
- addressing the stigma that people with ADHD experience including in healthcare, education and the community;
- non-hyperactive presentations of ADHD and gender bias;
- ADHD in First Nations, culturally and linguistically diverse and LGBTQIA+ communities
