ADHD Foundation Limited

Final Submission for NDIS

Which of the following statements best describes you?

  • I’m a parent / guardian or other family member of a person with disability
  • I’m a disability advocate and/or work for a disability peak association or service provider
  • I’m a health professional

Question 1:
During the first stage of consultations we heard that the vision and the six outcome areas under the current Strategy are still the right ones. Do you have any comments on the vision and outcome areas being proposed for the new Strategy?

We applaud and support this vision which has the capacity to radically improve the equity and wellbeing of the 1 million Australians living with clinically diagnosable Attention Deficit Hyperactivity Disorder, and associated Neuro-Developmental conditions which the ADHD Foundation represents. Currently legislations allow the States and Territories to avoid their responsibility to provide support through Public Health and Education. To be truly inclusive requires action towards inclusivity for all. Therefore we recommend that ADHD be included and that the ADHD community be supported to have the same access to public health and education services in order to deliver a vision that represents an equal chance for people to be diagnosed and treated in order to reach their potential.

We agree that the disability policy landscape has changed dramatically since the introduction of the NDA and the NDA no longer reflects the disability needs of Australians who require this service. As will be stated in various areas of this report the “forgotten” group of people, who through no fault of their own, have either been diagnosed or undiagnosed with ADHD.
A consequence of this exclusion has wider ramifications than barriers to access the NDIS

Question 2:
What do you think about the guiding principles proposed here?

The rights of people with ADHD are not being protected, children, adolescents and adults make up a significant proportion (up to 40%), of those in the justice system. They are rarely identified and understood and re-directed into the Health and Education systems. Even if they are identified, the Public Health Systems in Australia do not diagnose and treat adult ADHD, they need to seek expensive help in the Private Health System.
Without the support of the NDIS, many people become unemployed, homeless, lose custody of their children, become victims of the criminal justice system at an early age and continue into adulthood, to often reaching the decision to suicide because they have not been correctly diagnosed and treated. The costs of private diagnosis are prohibitive to many families and individuals. The Henry Report 2019, in NSW identified excessive waiting times for diagnosis and treatment of children with ADHD. The situation for adults is even worse. We recommend this oversight be rectified and inclusion for those with ADHD to have the same access to financial support through the NDIS from 2021. With early intervention and support this “forgotten” group within the disability sector can flourish in society and live their best lives.

Question 3:
What is your view on the proposal for the new Strategy to have a stronger emphasis on improving community attitudes across all outcome areas?

The ADHD community has suffered greatly from misinformation and stigma, especially in the media. Thankfully, we are seeing a more positive change in public opinion, but this needs to be transferred to action as we have enough evidence and research to constitute change. Recent research, led by the Murdoch Children’s Research Institute (MCRI) and published in Pediatrics, highlighted the importance of identifying
academic, behavioural, and social functioning difficulties in the first years of school and empowering teachers and parents to intervene early.
As mentioned earlier in the submission, The Journal of Attention Disorders study, led by the Australian ADHD Professionals Association (AAPDA) and Deloitte Access Economics in collaboration with MCRI researchers, revealed for the first time the true social and economic cost of ADHD to the Australian community.
Some companies in the industry have managed to identify that Neurodiversity particularly ADHD is an asset when the people living with it are included not overwhelmed and forced to fit into a typical system. These companies have capitalised on the asset of neurodiversity by realising that diverse teams are more productive than homogenous teams.

Question 4:
How do you think that clearly outlining what each government is responsible for could make it easier for people with disability to access the supports and services they need?

A unified approach that enables people with disability to find understand and access support is vital to the ongoing management of this important service. Currently as mentioned in the documentation the NDA, NDS and NDIS are not compatible as guiding principles and conflict with each other in content. Currently, there are unnecessary and complex systems that require navigation by both government and services within their portfolios. Having one clear and concise agreement and legislation that emulates the Vision of the NDS is vital. It is a requirement that government agencies articulate clearly from a vision that is central and steeped in equity for all mental health citizens of Australia which includes ADHD. ADHD Foundation agrees with the statement “An overarching agreement is needed to clarify the relationship between all aspects of the disability policy landscape, and to facilitate cooperation between governments and promote greater accountability. Further, the Commission is of the view that a national agreement is likely to be the most effective instrument to influence and drive government policies and practices to achieve the agreed outcomes” However, we need to stress that ADHD as a disability MUST be included clearly in all reviews to avoid ethical dilemmas.

Question 5:
How do you think the Strategy should represent the role that the non-government sector plays in improving outcomes for people with disability?

The current National Disability Agreement (NDA) no longer serves its purpose, particularly for people with ADHD. It has a weak influence on policy, and its performance targets show no progress in improving the wellbeing of people with disability. One clear inclusive and overarching document that covers the whole life cycle and interacts with mental health, education, workplace and support services in a holistic, inclusive for all and lined in positive outcomes will reduce misinterpretation, misunderstanding and inequalities.
In summary, the disability policy landscape has changed markedly since the NDA was signed in 2008. The National Disability Insurance Scheme (NDIS) commenced in 2013, focusing on supports for approximately 475 000 people with a significant and permanent disability. And the National Disability Strategy (NDS), which covers all people with disability (approximately 4.3 million), was endorsed by all Australian Governments in 2011. The changing landscape now insists that ADHD must be included in 2020
Improving the wellbeing of people with disability and carers across the nation requires a collaborative response from all levels of government, extending well beyond the NDIS to many other service systems, such as housing, transport, health, justice, and education.

Question 6:
What kind of information on the Strategy’s progress should governments make available to the public and how often should this information be made available?

The ADHD Foundation would like to be represented and involved in determining outcomes for our population, Outcomes and measures need to be developed in conjunction with disability groups and reported on bi-annually.
Accessible communication models should be adopted in consultation with the disability community,
Roles and responsibilities in the NDA need to be updated to reflect contemporary policy settings, to reduce uncertainty and to address gaps in several areas — including in relation to advocacy and the interface between the NDIS and mainstream service systems. To facilitate greater clarity in responsibilities, governments should articulate and publish which programs they are rolling into the NDIS and how they will support people with disability who are not covered by the NDIS. They should also through the COAG Disability Reform Council (DRC)) undertake comprehensive gap analysis, with the new NDA outlining responsibilities for addressing any gaps e.g., ADHD. A gap analysis followed by a consumer-driven update should be undertaken every three years. No longer in today’s society is it adequate for a document to be developed by the government based on only fiscal and financial decisions. Working within communities, developing stakeholder relationships are pivotal

Question 7:
What do you think of the proposal to have Targeted Action Plans that focus on making improvements in specific areas within a defined period of time (for example within one, two or three years)?

ADHD Foundation considers that the proposal to have Targeted Action Plans focusing on determining timelines and an improvement strategy is visionary thinking and will provide clarity to government agencies, stakeholders and provide an action timeline that is transparent and accountable. As a representative body of at least a quarter of the disability population in Australia, we are recommending the following targeted outcomes for the ADHD community we serve.
ADHD status as a disability is included in the NDA, NDS and NDIS.
ADHD is accepted within the NDIS policies and these policies and procedures are supportive and inclusive
All-State and territories accepting that ADHD is a serious mental health condition and committing to programs that upskill staff in diagnosis and consistent public health treatment. Deliver consistency of legislation across all state’s education, diagnosis, and medication for all ages. Training of GP’s to manage simple presentations/medication of ADHD, to reduce waiting times as there are not enough specialists available to treat the level of this condition. All Education Departments recognizing that special learning needs of children with ADHD require to have special education. Include ADHD as a mental condition and apply item numbers for funding.

Question 8:
How could the proposed Engagement Plan ensure people with disability, and the disability community, are involved in the delivery and monitoring of the next Strategy?

ADHD Foundation agrees with this statement. There needs to be robust interaction, with transparency between those responsible for outcomes, and the consumer groups. With an improved, interactions and guidance from consumer representative organizations, early interventions in the early years through the lifespan will effectively ensure accurate understanding of the needs of all disability identification of those at risk of ADHD and other mental health conditions will reduce the likelihood of other conditions like anxiety and depression and suicidal ideation. Early screening will also reduce the stigma, negative learned behaviours and bullying etc., that can occur. People with ADHD have been neglected in many policy and processes if treated early in life it will have a highly visible reduction in associated costs and burdens. Not to mention the cost to a life of potential, health, and wellbeing. Recognition of ADHD and neurodiversity as a disability directly reduces stigma and harmful misinformation and increases access to support through government, education, community, family, workplaces, and healthcare. Increasing support and early recognition and management provide a significant return on investment and wellbeing in the neurodiverse community and society in general.

Question 9:
Is there anything else you would like to share about the ideas and proposals in the position paper?

In Australia 3.2 per cent (814,500) of people and one in 20 children have ADHD, however, the undiagnosed may well represent a much higher percentage. The ADHD Foundation represents the estimated 1million ADHD community specifically, and those who are neurodiverse. ADHD and those with Specific Learning Disabilities, are included in the Commonwealth Disabilities Discrimination Act 1992 (updated 2019 part 5 and 6), yet in NDIS legislation both have been excluded. The vision statement can only be implemented as a true statement ensuring that “an inclusive Australian society that enables all people with disabilities to fulfil their potential as equal members of the community”. ADHD is a lifelong neurodevelopmental condition. This condition can be managed successfully with the same government support as that aligned with other mental health conditions. Those with ADHD learn differently from those who are classed as neurotypical. Without Disability Status there is no requirement for educational systems to modify their practices to give a level playing field for those who learn differently.
By NOT providing equality in support to those with ADHD the social and economic costs to society and the wellbeing of everyone are gigantic. According to the Social and Economic Costs of ADHD in Australia (Deloitte 2019) report. The total cost of crime due to ADHD in 2019, including the cost to the youth justice system, was estimated to be $307 million.
The overall economic cost of ADHD to the Australian Community is over $20 billion annually. Social and Economic Costs of ADHD in Australia
The Deloitte report found ADHD imposes significant economic and wellbeing costs on the Australian population and can have lifelong impacts on educational achievement, occupational attainment, and the increased likelihood of crime + interaction with the youth justice system.
In the interest of the welfare of people with ADHD, we ask that the Vision under the new strategy includes ADHD and updated in legislation to ensure that consistent information is delivered to all States and Territories in Australia. Only then will an inclusive Australian society enable people with a disability diagnosed as ADHD be able to fulfil their potential as equal members of the community.
The ADHD Foundation seeks a recommendation that sees specialist ADHD teams for children, young people and adults jointly develop age-appropriate training programs for the diagnosis and management of ADHD for mental health, Paediatrics, social care, education, forensic and primary care providers and other professionals who have contact with people with ADHD.”
In the meantime, children with ADHD are judged as having bad behaviour and instead of collaborative management, children are being suspended from education as a preferred option. Educating, parenting and management as `normal` do not work with these children. Parents and children need more support and understanding. ADHD is not a behavioral problem it is a complex lifelong neurodevelopmental condition. The cost of inclusion of early diagnosis of ADHD has a measurable financial saving for government compared to the costs of not treating ADHD. There is an important role for a new NDA that has at its core firmly aligned to the wellbeing and needs of all people with disability their families. The purpose of a new NDA would be to provide an overarching agreement for disability policy, ensure that the vision is fully transparent, inclusive of all mental and physical disabilities, to clarify legislation, roles and responsibilities, to promote cooperation and to enhance accountability. The new NDA should:−set out the aspirational objective for disability policy in Australia — people with disability and their families have an enhanced quality of life and participate as valued members of the community — and acknowledge and reflect the rights committed to by Australia under the United Nations Convention on the Rights of Persons with Disabilities outlining the roles and responsibilities of governments in progressing that objective; the outcomes being sought for people with disability; and a nationally consistent performance reporting framework for tracking progress against those outcomes. should continue to play the essential role of articulating policy actions, with these actions explicitly linked to the new NDA’s outcomes. The agreements governing the NDIS would remain separate to the NDA and referenced throughout so that the NDA is reflective of the whole disability system. process. many of the ADHD Foundation Directors have been working passionately and unrelenting with people with ADHD for a minimum of 25 years each and have extensive experience and knowledge around actual needs of this disability group. We understand that there is much to be done in this area but as a first step have a clear recognition of ADHD included in the NDS, NDIA and NDIS 2021 is a positive step 1 positive change.