Introduction
The Australian Senate is currently conducting an inquiry focused on enhancing assessment and support services for individuals with Attention Deficit Hyperactivity Disorder (ADHD). This critical examination aims to address gaps in existing systems and facilitate improved outcomes for those living with ADHD.
Inception and Objectives
The inquiry was initiated in response to growing concerns about the adequacy of assessment and support services available to people with ADHD. The primary objectives of the inquiry are to:
- evaluate the effectiveness and accessibility of current assessment methods for diagnosing ADHD;
- examine the availability and quality of support services, interventions, and treatments for individuals with ADHD; and
- explore opportunities for early intervention strategies that can mitigate the impact of ADHD on individuals and their families.
Terms of Reference
The Inquiry’s Terms of Reference encompass a comprehensive review of various aspects related to ADHD assessment and support services.
Key areas of focus include:
- the adequacy of access to ADHD diagnosis;
- the adequacy of access to supports after an ADHD assessment;
- the availability, training and attitudes of treating practitioners including workforce development options for increasing access to ADHD assessment and support services;
- the impact of gender bias in ADHD assessment, support services and research;
- the access to and cost of ADHD medication, including Medicare and Pharmaceutical Benefits Scheme coverage and options to improve access to ADHD medications;
- the role of the National Disability Insurance Scheme in supporting people with ADHD, with particular emphasis on the scheme’s responsibility to recognise ADHD as a primary disability;
- the adequacy of, and interaction between Commonwealth, state and local government services to meet the needs of people with ADHD at all life stages;
- the adequacy of Commonwealth funding allocated to ADHD research;
- the social and economic cost of failing to provide adequate and appropriate ADHD services;
- the viability of recommendations from the Australian ADHD Professionals Association’s Australian evidence-based clinical practice guideline for ADHD;
- international best practice for ADHD diagnosis, support services, practitioner education and cost;
- any other related matters.
Public Submissions and Hearing
Public Submissions to the Inquiry closed on 9 June 2023 and 298 were received demonstrating a widespread public interest and concern. Public Hearings were held on 29 June and 24 July with transcripts published here.
Having read the transcripts for both of the Public Hearings these are my thoughts:
Summary
The Senate Committee hearings have discussed barriers to ADHD assessment and support services. ADHD Australia and the ADHD Foundation provided opening statements and highlighted the challenges faced by individuals with ADHD. Barriers to diagnosis, treatment, and support were discussed, including long wait times, high costs, and stigma. The impact of stigma on government services, research, and policymaking was emphasised, and the need for public awareness and education was highlighted. Both organizations called for ADHD to be recognized as a primary mental health condition, included in the NDIS, and addressed through improved public awareness and collaboration across different sectors.
I don’t disagree with any of this and the Senate Inquiry is welcome, long overdue and opens the door to greater awareness and improved access to diagnosis, treatment, support and funding for people living with ADHD.
BUT…..
The Senate Committee Hearings focus on ADHD exclusively through the lens of the medical model of disability in which ADHD is viewed as a disorder that needs to be diagnosed by a clinician and treated with medication so that the individual can function in socially acceptable and effective ways.
There’s nothing wrong with the medical model of disability itself and it does offer individuals improvements in functioning and quality of life. But it has been criticised for reducing the complex experiences of ADHD to a set of clinical signs and pathologies within the individual and fails to recognise the systemic, environmental and social barriers that negatively impact the individual’s ability to function.
In contrast, the social model of disability suggests that disability is not just a personal impairment but is created and maintained by social barriers and discrimination.
Applying the social model of disability to ADHD requires an understanding of the environmental and social factors that contribute to the challenges. This approach recognizes that ADHD may not be a deficit within the individual, but a result of systemic and environmental factors such as stigma, discrimination, lack of support, or inadequate training, that may hinder the individual’s ability to succeed in certain contexts.
In recent years, the social model of disability has gained popularity in understanding the experiences of neurodivergent individuals. Several scholars have argued that a more holistic approach to ADHD, that considers the social and environmental factors that impact the individual’s experience of ADHD may lead to more effective interventions that address the root causes of the impairments (Faraone et al., 2021).
The Inquiry also fails to recognise that ADHD usually doesn’t occur in isolation. Most people who have an ADHD-type brain also have other neurodivergent functioning such as Autism, or Dyslexia, or Dysgraphia, or Dyspraxia etc. and often these have overlapping and sometimes even competing traits and will commonly have a comorbid mental health condition such as anxiety, depression, major depressive disorder etc., which can lead to challenges in both diagnosis and treatment.
Adults who have lived most of their lives with undiagnosed ADHD often do not see themselves as disabled and develop various coping and masking strategies to allow them to function, sometimes at very high levels.
A recent study of six recently diagnosed adult males identified a number of positive characteristics of ADHD to which these participants credited their success in life. These were cognitive dynamism, courage, energy, humanity, resilience and transcendence. This study also challenged the notion of ADHD as a disability and said “The positive aspects of ADHD found in this study are benefits, resources, skills or strategies that can be used to mediate and/or compensate for ADHD-related deficits or impairments.” (Sedgwick, 2019).
Secondly, people who have ADHD are usually reluctant to disclose it to their employer either because they don’t consider themselves to be disabled or because they fear discrimination and judgement.
At the same time as treating ADHD as a medical condition that can be improved with the right treatment and supports, if we also view ADHD through the social model of disability we can work on creating more accessible and inclusive organisational systems and fewer people will be disabled by those systemic and environmental factors that are external to them.
For example, if employers routinely install the many freely available accessibility features such as ADHD and Dyslexia friendly fonts, text-to-voice/voice-to-text software and planning and time-keeping features and workers are told how to access them if they need to, then they can make those adjustments for themselves without having to disclose their challenges and ask for help.
If employers routinely make essential work documents, policies, procedures, forms, training materials etc. available in various media (e.g., digital, audio, video) and not just the paper-based policies and forms to fill in by hand, then more people will be able to access the information they need without having to ask for help.
The evidence is clear that ADHD has been underdiagnosed and misdiagnosed in Australia and there are significant barriers to early intervention and inequities in the way that ADHD is provided for under the various government schemes.
I don’t disagree that improvements are needed in training for general practitioners, psychologists, psychiatrists and educators and greater access to funding and support. Early recognition and intervention is essential.
Once a child is diagnosed, treated and supported both clinically and educationally the profound increased health and socioeconomic risk factors associated with unmanaged ADHD that lead to a shortened life expectancy of 11 – 13 years (Barkley & Fischer, 2019) can be reduced and opportunities and quality of life for these individuals vastly improved.
But research has shown that 90% of those diagnosed with ADHD in childhood will continue to experience challenges into adulthood (Sibley et al., 2019). ADHD is a neurodevelopmental difference that is usually genetic and lifelong.
Any supports and adjustments the individual with ADHD can access during their childhood and formative years will generally be completely absent from the workplace. So, the need for employers to be educated, supported and empowered to create inclusive work systems and practices that will allow all workers to function at their best without having to ask for “reasonable adjustments” is critical.
The release date of the Senate Inquiry’s final report is not yet known but I will post more about it then. I hope that it will present findings, insights, and actionable recommendations aimed at enhancing assessment accuracy, expanding access to support services, and fostering a more supportive environment, including the work environment for individuals with ADHD.
Conclusion
In conclusion, the Australian Senate Inquiry into Assessment and Support Services for People with ADHD is a vital step towards addressing the needs of individuals living with ADHD. By evaluating the effectiveness of current assessment methods, exploring support service availability, and promoting early interventions, the inquiry has the potential to create positive changes that will improve the lives of countless Australians affected by ADHD.
Catherine Lee (She/Her)
Director and Founder
RN dipOHN GradCertMgt GradDipOHS COHSProf
The Neurodiverse Safe Work Initiative