Note that throughout this blog post, I refer use various ways to talk about inidividuals with a diagnosis of ADHD. “People with ADHD,” “ADHDers” or “individuals with ADHD.” I myself identify as an ADHDer and fully embrace my identity as a neurodivergent individual, however, as this inquiry also acknowledged, not all people with ADHD identify with their diagnosis, as members of the disability community or as neurodivergent people. Therefore this language is used interchangably to ensure I am respecting all individuals views, beliefs & identities when it comes to their diagnosis of ADHD.
The Senate Community Affairs References Committee inquiry into barriers to consistent, timely and best practice assessment of ADHD and support services for people with ADHD was released this week (Nov 2023). Please note that all infographics in this post are directly from the Assessment and support services for people with ADHD report.
The committee took over 700 submissions (one of which was mine! Woohoo!), and evidence of 79 witnesses, attending three days of hearings across Australia. It acknowledges that ADHD identity is varied and a deeply personal experience. Many individuals have felt the lifelong impact of ADHD on themselves, their families and relationships, as well as their mental health, education, vocation and financial situations.
I wanted to share some important parts of the senate inquiry that I feel are vital to our ADHD community and the people who live with, work with and love us.
This is NOT a comprehensive summary – if you want the read the full report follow THIS LINK.
The committee identified barriers to people with ADHD getting assessments, diagnosis and supports that they need including:
- Lack of services including long wait times and limited availability. Acknowledged insufficient services in regional, rural and remote areas.
- High Cost of services
- Lack of supports in schools, out-of-home care and correctional facilities.
- Poor consumer experiences including lack of reliable information about ADHD and stigma.
- Specific Challenges acknowledged for girls, women and gender-diverse people, First Nations peoples and people from culturally and linguistically diverse backgrounds.
The committee made a list of recommendations based on the inquiry, which will see ADHDers gain supports that they need. You can read them all in the report, but here they are in my words:
1. The Australian Government should fund and co-design (with people with ADHD, ADHD advocates and community organisations) a National Framework for ADHD.
2. The Australian Government should consult with people with lived experience of ADHD, healthcare experts and organisations to improve access to and costs of ADHD healthcare. They highlighted in particularly access for diagnosis and ongoing care and make it simplier for people in rural or remote areas to access care. This would make healthcare more accessible and affordable.
3. The Australian Government should review the Medicare Benefits Schedule to make access to ADHD assessment, diagnosis and support services more accessible.
4. The Australian Government should review the Pharmaceutical Benefits Scheme (PBS) to make sure people with ADHD can safely and effectively use ADHD medications according to their needs.
5. The Federal Government should create consistent rules for prescribing medications, so all states and territories have a standard set of rules in regards to how medications are prescribed.
6. The Australian Government should work together with people with ADHD and organisations that support and advocate for ADHDers to create a government website or portal for accurate and reliable ADHD information and assistance.
7. The Australian Government should carry out a public awareness campaign promoting neurodiversity understanding and acceptance in society. This would help reduce stigma associated with ADHD.
8. The NDIS should improve their accessibility and quality of information for people with ADHD to determine if they are eligible for NDIS supports.
9. The Department of Social Services should continue to provide funding for advocacy organisations, including ADHD advocacy organisations to support people with ADHD, specific to their needs and challenges.
10. The Australian Government should take steps to improve training programs that teach individuals about the needs of ADHD individuals, particularly in schools, institutions and workplaces. Minimum standards for neurodiversity training (including ADHD) should be considered.
11. The Australian Government should make efforts to improve healthcare services specifically designed for people with ADHD who are in institutions, such as in hospitals or correctional facilities.
12. The Australian Government should conduct a “scope of practice review” to develop pathways for a broader range of healthcare professionals to be able to offer assessments and support services for ADHDers. This could include GPs and Nurse Practitioners.
13. All levels of government should invest in the implementation of the Australian ADHD Professionals Association’s Australian Evidence-Based Clinical Practice Guidelines for ADHD to ensure all healthcare professionals and policymakers are aware and using best practices for ADHD.
14. The Australian Government should provide funding to non-profit organisations run by individuals with personal experience of ADHD. These should provide community-based and targeted services to ADHDers, such as advice and support helplines, legal aid, financial counselling and assistance in accessing assessments and supports.
15. The Australian Government should provide support for further research into ADHD. It should be aimed at enhancing our understanding of ADHD and finding ways of reducing the associated stigma.
Now what alot of us ADHDers were waiting for… can you, or should you be able to access funding for being an ADHDer on the NDIS?
The senate report indicates that there is confusion about whether ADHD makes you eligible for funding supports through the NDIS, and the NDIS needs to improve their information whether ADHD is an eligible disability.
According to the Health and Aged Care data that was submitted to the senate inquiry, NDIS IS available to people with ADHD as their primary disability. However, they also only 40 (yes you read that right – 40!) adults in Australia are on the NDIS with ADHD as their primary disability.
The Australian ADHD Professionals Association states that “ADHD is not on the list of eligible conditions for entry into the NDIS. Although this does not excluse those with significant impairment from accessing the scheme, it has meant that no meaningful communication has been possible to educate the NDIS in the needs of those who are disabled by ADHD.”
The report states that, “The belief that ADHD does not attract NDIS funding appears to come from the NDIA’s access lists”. These are a list of conditions that are deemed “likely to meet disability requirements” and make a person eligible for NDIS support. ADHD is not on the access lists. “However access lists do not override the provisions of the National Disability Insurance Scheme Act 2013 (NDIS Act 2013), which means that people with ADHD can “become NDIS participants if the meet the requirements’ of the NDIS act.”
According to the NDIS Act access to the NDIS is not based on the type of disability, condition, illness or injury. Instead the partipant must meet five criteria to satisfy the disability requirements. Read here for more information: Chapter 7 – ADHD under the NDIS.
However, in my personal experience and experiences of hundreds of others that are shared with me, ADHD alone getting supported through the NDIS, even if they fulfill the disability requirements, is rarer than hens teeth. (What a wierd saying! I just googled it! And it is an idiom. It means “something that is so rare it is almost non-existent. This is because chicken’s don’t have teeth! There you go – I didn’t know that!)
What happens now?
The fact that this senate inquiry was completed is absolutely fantastic. This is truly the first step to reducing stigma and increasing quality of life for ADHDers in Australia. But what happens now?
The inquiry’s recommendations will be tabled in parliament and the Government has three months to respond to the recommendations.
I will be waiting with baited breath to see how the Government responds. Unfortunately, stigma and ignorance is still present, even in Government (no shock there!), and being an ADHDer myself, I can’t tell you how important these recommendations are for adult ADHDers and kids who require appropriate assessment, diagnosis and supports.
P.s. I had to google “Bated breath” and FYI: It first appeared in Shakespeare’s Merchant of Venice in 1605. It was a shortened form of “abated”, which means “stopped or reduced.” The phrase refers to people holding their breath in excitement or fear as they wait to see what happens next! There you go! 😉
ADHD Advocacy for the win!