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 support my Son age 11 years who has ADHD, Anxiety and Depression. Schools are not inclusive nor understanding if his diagnosis or challenges. Lack if community education on hidden disabilities in young people. Many judge a book by the cover. Schools are only interested if kids have autism diagnosis for additional funding.
What is most important to measure and report on as we seek to achieve economic security for people with disability?
We need to support individuals with ADHD to have reasonable adjustments to allow them to remain in main school education without constant suspensions and exclusions as a result of symptoms of their illness. YMCA and other schools are not suitable for this cohort either as they are really vulnerable. We need to recognise ADHD on NDIS and the impact these illnesses have on the whole family. We are setting these kids up to fail.
What is most important to measure and report on as we seek to achieve health and wellbeing outcomes for people with disability?
Increase accessibility to skilled professionals who take time to know the family and support through challenging journey. To stop families having to battle and fight for their child to get a diagnosis. Not to have huge waiting lists or being told they are not severe enough to access services, my Son tells us everyday day he doesn’t want to be here, he isn11 and not attending school and no friends what a lonely life but yet we are told as he hasn’t harmed himself there is not anything they can do. The only reason he hasn’t is because we keep him safe. One time he will harm himself and will this be out fault or the system that continually let’s him down. 7hr wait in A&E for a kid with these issue during a breakdown and still no acute mental health team availability- response might be another 60 minutes or 6 hours- at that point we conform son and leave hospital.
What is most important to measure and report on as we seek to achieve rights, protection, justice and legislation outcomes for people with disability?
Inclusion is key, opportunities for all. Diagnosis should not be only way to get suitable supports each individual is different. Kids should be safe at school, more education needed for kids and teachers on hidden disabilities (just because they don’t have a visible disability doesn’t mean they are not disabled). Justice there needs to be an understanding for individuals with challenging behaviours and consequences as on may occasion their behaviours are not a choice they are a symptom of their illness. Carers need to be recognised for the wonderful work they do, we need more advocates (free) for families trying to navigate complex government frameworks – NDIS, Medicare and education.
What is most important to measure and report on as we seek to achieve learning and skills outcomes for people with disability?
Schools need additional funding to support kids with challenging behaviours or illnesses like ADHD and ODD not just autism. More support needs to be provided during first 6 years of schooling many services commence age 12 – by then its too late. Educational adaptability – a curriculum that meets individual needs, capacity and passion. Schools need to work with families to best support their child – they know what works and doesn’t work. School framework is outdated and doesn’t reflect up to date school cohort. Schools need to stop working in silo let NFP organisation come in educate, students and school community on disabilities and the impact school has on future opportunities. My Son has been suspended over 7 times, this is not a punishment for him as he hates school and is afraid. This punishment is for myself and his father who work full time and regularly have to take time off work to stay with him at home. Suspension should not be an option but in our experience in 3 state schools it is the first option. We are considering now home schooling which presents many challenges including losing our home. Families need support to navigate these challenges its really difficult. School connectors, places were families like me can go for support and talk through options that fit our sons needs and family needs.
What is most important to measure and report on as we seek to achieve personal and community support outcomes for people with disability?
NDIS needs be more inclusive and include ADHD and other illnesses. If we can have support at an early intervention leave this will save millions down the line. Carers need support and assistance to navigate the challenges as discussed previously. More options for kids with diagnosis, acknowledge increasing ADHD, ODD and Autism stats ensure that support reflects the needs from an evidence base. The pathways should be clear from each family, we have been referred to many inappropriate services to support our Son and not one person has asked how we are coping, or kinked us with services. Education for GPs is a must. Additional funding should be put into mental health hubs for young people under 12s no support we have been searching for years and just passed. Journey GP – Psychologist – Paediatrician – Psychologist – unable to help as out with my skill set Psychiatrist this is so hard to navigate for me. I can’t imagine how difficult it is for my son.
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?
I think annual reviews is a suitable period of time – but I should say this will depend on wait times for families to access services supports. If a family needs to wait 6 months for services then this only gives 6 months for support to be in place. I think reviews should be flexible depending on the individual and their needs. Circumstances should also be taken into account.
Is there anything else that you think should be considered when we are monitoring and measuring the impact of activities on people with disability?
Please be guided by parents and carers. Many of us don’t receive supports and are at breaking point. Frustrated by lack of services and supports. Additional paperwork and reviews add to stresses. Supports for families to prepare for a review including advocacy as needed.