ACT for Autism

Community consultation begins. Deadline 15th March.

Community consultation open for Draft National Guidance Have your say. A draft of the National Guidance for best practice in inclusive education for autistic students is now available for community feedback. Consultation closes Sunday 15 March at 11:59pm AEST (QLD time).

RIP Noah Johnston, 22yo.

He died whilst his mother was in the ART process, fighting his funding cuts. His providers had predicted he would die if the ndis didn't restore the overnight care he required from an appropriately trained individual.

They were right. His mother was right, and had pleaded for a very long time that 1:1 24/7 care was reasonable and necessary, as if his ventilator became faulty, or if the tube needed attention, he couldn't do it himself.

The ndia had paid for lawyers to argue for them. They had paid for an expert witness to 'assess' independently if Noah's mother, or his providers, were asking for supports that he didn't really need. The expert they appointed did not support the agency's view.

Here in Perth, we know so many people who have had to quit their jobs, try to hire lawyers, or watch their children regress due to the ndis and their funding decisions and cuts.

We recently supported a client through an ART process that took over a year. They were successful in getting their funding restored to the pre-cut level. This was a child who needed low intensity supports and they wanted funds for a weekly speech pathology session restored, amongst other minor changes. Based on common hourly rates, the ndia likely paid their lawyers more than 30x the $ value that the child's family were seeking be restored to their ndis plan for therapy.

This wasn't life or death and our love and thoughts are with Noah's family, and other ndis participants who have recently died or suffered disability related su***de who's experiences are not public knowledge.

The purpose of this post is to highlight a systemic incompetence that is both killing people, and spending tax payers money on actions that are damaging the economy by preventing parents from working and reducing job opportunities for much needed, well qualified individuals to provide therapy and critical care in the disability sector.

Most people can't relate to what it's like to live with profound disabilities - the chronic stress and the cycle of grief that comes with living a life that doesn't match the blueprint of the life you expected or wanted. But just imagine for a moment:

- if from tomorrow you needed another person to wipe your bottom and wash you, and every year you had to provide evidence of that need and there was a chance it could be taken away.
- if you are a parent, that you are told your adult child's personal hygiene needs will remain your responsibility.
- if you are a parent, and need surgery, but are told if you want surgery your child will have to suffer because they will only be cared for if they move into a house with 3 other disabled people, who are strangers, who they won't get along with, and might be at risk of ongoing sleep disturbances and fear from their unsafe or upsetting behaviours.

There are so many awful shocking stories at the moment. For many individuals the ndis is a world leading incredible government scheme that helps disabled people have a good quality of life. As Australians, we can be proud we have this system.

But when the ndis get it wrong, the consequences can kill, or cause life long suffering and trigger further damage to the health of people and their loved ones.

The government do not argue with doctors who make recommendations about the support we need through Medicare.

Parents and individuals do not seek external ndis reviews at the ART for fun. Many cases are dropped as an hour or two support from legal aid is not sufficient to build capacity to fight against government paid lawyers, often during one of the most personally stressful times of their lives when their capacity to fit another thing in to their lives may not be possible.

Over 80% of ART cases involving ndis decisions have an outcome in the applicant's favour. Noah's ruling was scheduled for March. Shame on anyone who earns money supporting funding cuts for human's ndis plans when they have no idea what that person actually needs for health, dignity, and a quality of life that most people take for granted.

RIP Noah.

(Photo source: disability advocacy)

https://www.health.wa.gov.au/Improving-WA-Health/WA-Virtual-Emergency-Department

For the kids who struggle to transition out of the house, or who need medical support but have experienced hospital based trauma.

Has anyone used this service?

WA Virtual Emergency Department The WA Virtual Emergency Department (WAVED) will enable residents of aged care facilities to be seen virtually in the comfort of their own home when safe and appropriate to do so, rather than waiting to be seen in an emergency department (ED).