In November 2023 a final report into Assessment and support services for people with ADHD was submitted to the Australian Senate. It includes a mind-boggling amount of work from so many people connected with and living with ADHD in Australia.
The report is 307 pages long and, to be quite honest, it addresses lots of things that have been addressed many times before. However, it’s reassuring to know that this is now a starting point, bringing many lived-experience perspectives, information from evidence (scientific), and professional understandings of ADHD into the view of the Australian government, within a single report. We are due to receive a response from parliament on Friday 9th Nov 2023.
If you don’t have the time (or desire) to read all 307 pages, I’ve summarised and pasted some of the recommendations, information and submissions below. This is not a full summary of the report – rather it’s some information that is relevant to our clients and work here at Be, at the moment. If you’d like to know more about the specifics please get in touch.
General recommendations
Within the report are recommendations for health professionals, government actions, schools, and many other organisations who have a part to play in better diagnosis of ADHD, reducing the stigma and increasing their awareness around management of symptoms. Some of those recommendations are pasted below:
9.32 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.
9.59 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).
9.72 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.
1. Education
Many of our clients and community have children who are struggling with the lack of accomodations made for them in school settings, and the difficulty in funding specialised support services within schools for their child. The report very clearly states that any child with a disability (including ADHD) has a right to be educated in a way that is most appropriate for them:
1.81 All education providers from kindy to university are required to comply with the Disability Standards for Education 2005 which require them to provide education in a safe environment and make reasonable adjustments to allow students with disability (including those without a diagnosis)—such as ADHD—to ‘access, participate, and learn on the same basis as students and children without disability’, and with ‘opportunities and choices which are comparable with those offered to students without disability’. This includes consulting with the person with disability, making reasonable adjustments, and eliminating harassment and victimisation.
I will add more about education, schools and school anxiety from the report in a separate post, however, the current situation for many students is that schools simply refuse to allow even simple accomodations for their disability, seeing ADHD symptoms as something the student is choosing not to control. This view is inaccurate at best, discrimination at worst. Parents and students should be aware that schools are required to comply with the Disability Standards for Education and feel confident in advocating for their right to a safe environment that provides all students with opportunities to grow and develop.
2. Workplace and Employment
ADHD has a substantial impact on productivity. A recent study estimated Australia could save over $12 billion per year if appropriate supports were provided to those with ADHD.
It is interesting to note that (in recommendation 2.32), while improved access to assessment and treatment would have positive impacts on the ability of people with ADHD to participate in work, there were other workplace-specific strategies that could also be used.
These strategies could include more awareness of ADHD symptoms, simple accomodations such as breaks, reduced sensory input, providing instructions in a more ADHD-friendly way, etc. The Tasmanian ADHD Support Group noted that greater access to ADHD coaches to help with ‘functional life strategies’ could be ‘life changing for adults with ADHD’ This is not difficult to do – and, with funding, doesn’t cost employers anything. If employers are able to be more aware of ADHD and encourage their employees to seek coaching support, they will see an increase in productivity and workplace cohesion.
3. Carers
The report also detailed excerpts of the many submissions submitted by those living with ADHD. It is a heartbreaking read in many ways. Carers in particular have been subjected to exhausting amounts of emotional and mental load while trying to manage the symptoms of loved ones and family members. So often parents, in particular, become the brunt of judgements from others. They often feel like, and are openly told, that their child’s experience is the result of poor parenting.
As one submission states: taking on “the executive functioning load for other members of the family that are not capable of performing basic self-care and life skills without consistent reminders or assistance is draining.”
4. Grief – and diagnosis later in life
Many people are diagnosed later in life, after struggling through school and various jobs or unemployment, only to find out that they were never lazy, disorganised or otherwise incapable, in a way that they could rectify by choice, as they’re often told. What they were experiencing was a disability that requires specific support in order to manage. After diagnosis many people feel a kind of relief, finally a way of explaining that they were always putting in ‘the effort’ but because of their disability could not sustain or direct it.
From that point often comes a type of grief as they look back on a life that could have been so different. As one submission so beautifully put it: “We grieve for the happy, over-achieving children we were, and for the studious and friendly teens we could have been. We grieve for the relationships that were lost because of our inability to maintain them, and for all the times we failed and blamed ourselves, only to find out that it was never a problem of competence, but of accessibility. It is difficult to describe the feeling of loss that comes from only fully understanding your experiences, and even yourself, in hindsight.”
I’m happy to say that while I like to describe ADHD coaching as a manual for how to use your ADHD, it also provides some hope that the over-achieving, inspired and interested child is still in you, and we work with ways to bring that child-like curiosity and motivation back to the adult.
5. Stigma
Negative attitudes and judgements around ADHD are commonplace and affect ADHDers personally as well as their carers by affiliation. Unhelpful beliefs about ADHD often stem from a lack of access to reliable information about mental health and behavioural disorders in general. These beliefs are often communicated widely and can be held by both the community and professionals and can stop people from seeking help to manage their symptoms. As WA Health noted: “Lack of knowledge about the diagnosis/diagnostic requirements and the benefits and risks of treatment as well as the range of treatments available is widespread amongst the medical profession and the community at large.”
This stigma is not only unhelpful, it can also be a cause of more severe mental health problems when the sufferer internalises the blame, guilt, shame and feelings of being less capable than others. Simply, it “is not appropriate for consumers suffering from a recognised disorder to be subjected to suspicion and judgement”.
At Be we frequently hear from parents who have been advised by well-meaning family members, friends, teachers and even GPs, that medication is either unnecessary or a last resort option to be feared. The report sums up this sentiment in a submission from a parent:
4.49 “The 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.”
6. Diagnosis difficulty
So, let’s say you’ve had access to enough information to recognise ADHD, you’ve managed to tolerate or ignore the stigma – now you need to get the diagnosis for treatment. Here we find yet another hurdle.
The report delves in detail, into the difficulty experienced by many people, in getting a diagnosis, assessment and support. In Australia currently it is not unusual to wait 12 – 18 months to see a psychiatrist or peadiatrician for diagnosis. This is despite the knowledge that early intervention and supports are incredibly important to the life of the individual, especially in the case of children, and the impact that longer wait times have on the quality of life of the sufferer and those around them.
In my practise I have often been asked the question of whether diagnosis and medical treatment is helpful or harmful for children. As one submission explained: “… if children can be diagnosed early and treated, they are much better able to adapt and learn strategies to manage and work with their condition, and treatments have greater impact while the mind is more malleable. Treatment from a young age is irreplaceable, and will yield ongoing benefits for the rest of their life.”
Later life diagnosis is life changing, even considering all the ‘old habits’ and beliefs that need to be reworked over time. Early diagnosis is even better.
7. Costs
The report notes that the costs of diagnosis and assessment can vary significantly as well. This makes the process even more prohibitive as people are unsure what to expect, what is an acceptable rate and who to seek help from. While one psychiatrist may charge $600 for an assessment, another assessment process may charge from two to five thousand dollars. This discrepancy is unacceptable. Add this to the alarming rate of misdiagnosis (where health professionals have missed ADHD and in many cases prescribed medication for depression, anxiety or other conditions) it is clear that the pathway to good mental health treatment is severely lacking.
I have outlined what I consider to be the most direct pathway in another post, which I’ll try to keep up to date as things change, but, essentially, you will require a referral from your GP to a psychiatrist. That psychiatrist should be charging the standard rate that they would normally charge to assess any mental health condition. From there they might ask an adult to see a psychologist to ensure that the condition is not alleviated by other strategies usually employed for anxiety or non-medically treated depression (and other conditions) before trialling medication for ADHD. For a child, a visit to a suitably qualified paediatrician who will, again, charge their standard rate for any mental health condition, will be enough for diagnosis and beginning of medical treatment. Once diagnosed and/or medicated the individual can choose to find additional support from an ADHD coach and/or psychologist who has undertaken specific ADHD training. If medicated the prescribing professional will need to see you at regular intervals to ensure correct dosage and treatment. The ongoing prescriptions can be managed by a GP, however, at this stage this is not common in Australia. A GP, under the supervision of your prescribing psychiatrist, is more than capable of managing your medication and follow ups, and will communicate with your psychiatrist as needed.
8. Ongoing care and support
Despite the high costs and wait times of a diagnosis, once diagnosed there appears to be very little professional support or ongoing care. The report details experiences of people being given a diagnosis and medication, only to walk away and figure the rest out for themselves. Social media at this time is full of ADHD stories and suggestions, some of them are great, some of them are lacking good information. This isn’t necessarily a fault of social media, but instead shows that there is a massive gap in information and support for sufferers.
Dr Michele Toner pointed out the gaps in information and support, 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.”
Michele is a highly regarded ADHD Coach and coach mentor. Like Michele, at Be we know the value of coaching for ADHD to provide scaffolding and support which helps our clients to gain skills in time management, planning and organisation. ADHD coaching not only teaches these skills but also works to increase our client’s belief that they are capable of managing their symptoms and become more self-regulated. It’s not necessarily the skills that are lacking, it’s remembering to do something and the motivation to start or complete it. This is a vital part of ADHD coaching and a symptom that is often misinterpreted as laziness or defiance.
So, there you have it. Eight summaries from the report that reflect what we already know to be true about ADHD and the assessment and support process. Just because we as part of the ADHD community know about these things, doesn’t mean that the wider community does, so this report is an incredibly important first step into educating government, related organisations and professionals about a condition that is experienced by over a million people, right here in Australia.
