Which of the following statements best describes you?
- I’m a parent / guardian or other family member of a person with disability
What matters most to measure and report on as we seek to achieve inclusive and accessible communities for people with disability?
I am a parent of two boys – 13yo with ADHD, 9yo Autistic (Level 2)ADHD. There has been such strides made in the recognition and support of autism, but this is not the case for ADHD. ADHD has a vast functional impact on all areas of life – social, education, economic, sporting activities. ADHD is a 4 letter word no one wants to deal with. Government agencies need to recognise ADHD as a disability, streamline descriptive language to include it as a neurodevelopmental order (as per DSM-V diagnosis criteria)- in some areas it is a mental health condition or behavioural condition. If government departments don’t recognise it properly, how can it be supported? There is NO financial assistance to produce better outcomes for those with ADHD. NDIS offers no support as they consider it is not lifelong and can be managed by medication – any developmental paediatrician will tell you this is not the case. Medication helps the outward symptoms but not the underlying issues – slow processing speed, poor working memory, lack of emotional regulation, executive function issues. Most people continue ADHD into adulthood. Education departments don’t assist with support in schools, many children are misunderstood and excluded. No additional support for teachers or extra support staff. Medicare provides 10 partially rebated sessions on Mental Health Care Plan (as for anyone suffering temporary issues). This leaves a family with $120 out of pocket to pay for just one session psych or OT. Plus $40pm each for meds. Investment in ADHD will lead to better social and economic return in the long term.
What is most important to measure and report on as we seek to achieve economic security for people with disability?
Children become adults. Dr Ross Greene says “Kids do well if they can”. Children who are neurodiverse (ADHD, Autism, Dyslexia, Dysgraphia) are at an immediate disadvantage in an education system set up for neurotypical children. Education departments need to provide more training in additional needs for children, more staff to support those teachers, and embrace differences in the community.Most importantly they need accommodations at school that work. My 13yo finds handwriting painful, slow and he is unable to get thoughts onto paper easily, even though if he tells me about the subject his answers are brilliant. But there is no guarantee of accommodations for VCE and he is being discriminated against in this way. The playing field is not level.
With this poor start in life, the statistics for those in particular with ADHD are staggering – high risk for low learning, crime and addiction rates are massive. Society has told them that they are ‘bad’ early in life and will be unsuccessful. But these children have amazing minds and talents, they come up with solutions from outside the box. They are the innovators and entrepreneurs. All they need is accommodations in the education system, understanding and positivity. Then they will be incredible contributors economically as adults.
What is most important to measure and report on as we seek to achieve health and wellbeing outcomes for people with disability?
We are fortunate to have enough funds to seek health professionals. My 13yo was diagnosed ADHD aged 5, and received prior self funded intervention for OT for issues with attention and fine motor skills. Now at high school, he attends a psych monthly. His outcomes would be improved by speech therapy, OT, psych, literacy tutoring and explicit teaching of executive functioning skills, but we cannot afford this along with regular medical bills, psych and medication. There is a lack of services for adolescents, who need peer coaching, study skills and mental health support. They are expected to just deal with their disability and function in the education system at the same level as their peers. Issues with planning, prioritising and organising, poor fine motor skills and handwriting, low processing speed and poor attention, make it hard to thrive in our education system. Access to the NDIS and education support to improve outcomes would lead to better economic, health and wellbeing outcomes. There is essentially NO SUPPORT for those with ADHD from ANY avenue. My 9yo ADHD ASD L2 son was not diagnosed until age 7 and so missed out on all early intervention funding. He is not eligible for PSD funding as his language skills are adequate in one area. We have self funded therapy for him until we were successful in receiving NDIS funding in October for $15K which pays for speech therapy, OT, some psych and a social skills course. Support worker for 2 hours a week was denied. There is NO SUPPORT for carers who sacrifice career, money, time and mental health, burnout is a massive issue.
What is most important to measure and report on as we seek to achieve rights, protection, justice and legislation outcomes for people with disability?
Individuals with ADHD and autism need their rights protected to access equal standing in the education system, with their needs accommodated. My son’s high school has refused to write an Individual Education Plan for him, even though I have clearly laid out the legislation and recommendations from the DET. Asking a child with ADHD to sit still and focus on an examination paper that they have to handwrite is like asking someone in a wheelchair to get up and walk. Teachers try their absolute best but they need specific training in how to teach ADHD ASD kids. ADHDers are discriminated against, with disproportionate numbers of high rates of detentions, exclusions and suspensions, along with high levels of bullying and social isolation. They deserve to have their disability recognised by all government departments. They deserve to be protected by a health system that can offer them at least basic access to free or well-priced medication, intervention services to lessen the impact of their disability in the long term, and mental health support.
What is most important to measure and report on as we seek to achieve learning and skills outcomes for people with disability?
Yes. This is what we need. AN INCLUSIVE HIGH QUALITY EDUCATION SYSTEM THAT IS RESPONSIVE TO THEIR NEEDS. Understanding their challenges in learning and socialising by specialised training for teachers, and learning needs specialists in schools to co-ordinate needs and provide extra assistance to catch up kids in specific areas (look at the models offered by some independent schools already). Creating individual education plans for EVERY child with additional needs with specific aims that can be measured. Providing additional support in the classroom. Treating kids positively in the education system, knowing that they have amazing skills and strengths that can be harnessed. Giving accommodations for learning which they can carry through the education system, such as the use of assistive technology (speech to type, use of computer or scribe) through to VCE level, longer time for assessments, reduced homework requirements, explicit teaching of study and organisational skills. Access to psychology support, speech therapy, OT and positive behaviour support services to manage classroom and playground interactions.
What is most important to measure and report on as we seek to achieve personal and community support outcomes for people with disability?
Recognition of ADHD as a disability and a neurodevelopmental order. For diagnosis, there is often up to a year of waiting lists to see a paediatrician, same for psychologists and other allied health professionals, even if you can afford to pay for them, so access needs to be improved. There are NO SPECIALISED SERVICES FOR ADHD. The idea that you just take meds and you are magically cured seems to be the perception. ADHD mentors, and those that celebrate neurodiversity and unique gifts. Access to health funding is vital, via Medicare and/or NDIS, for allied health professionals. Access to the NDIS requires evidence your disability if permanent and has a significant impact on your daily life. Whilst ADHD and ASD Level 1 meet both these criteria, almost NO ONE gets A DOLLAR for funding for ADHD, and it is increasingly difficult to get funding for ASD L1. THIS HAS TO CHANGE. Investment in our children will lead to greater social and economic outcomes in the long term.
How often would you like to see progress against the outcomes for people with disability in the National Disability Strategy and the National Disability Insurance Scheme reported?
Is there anything else that you think should be considered when we are monitoring and measuring the impact of activities on people with disability?