'My brother lives with a disability. Here's what I wish someone told me and my family sooner.'

Any parent or carer of a child with a disability knows it comes with its challenges, the annual battles to get appropriate NDIS funding, the constant unwarranted parenting advice, the list goes on. However, no one warns you it gets harder when your child reaches adulthood.

I am not a parent – but a sister and carer – to the most amazing brother Tom who is 19 and has an intellectual disability. I have watched my parents plough through these hurdles his whole life. Yet it was only in this past year things seemed to get harder.

Tom has Global Developmental Delay, ADHD and Autism Spectrum Disorder meaning he cannot do all the things neurotypical people his age can. 

He has a limited vocabulary, he needs assistance dressing and bathing himself, and no matter how hard we try he still without fail puts his shoes on the wrong feet every time (one day he will get it). 

Tom needs a lot of assistance in the day to day and probably will for his lifetime which is okay, but it's making things complicated.

We've Got This - Parenting With A Disability. Post continues below.

Since Tom has become a legal adult, the barrier for myself and my parents to obtain all he needs to live a fulfilled life seems suddenly bigger than ever.

Myself, mum, dad and Tom. Image: Supplied.

This is for good reason. It is absolutely essential for people with intellectual disabilities to be afforded every opportunity for independence and protections against abuse and exploitation. 

This should not be changed. 

However, I do believe for the people like Tom, who have disabilities that require lifelong assistance, measurements should be in place to support parents and carers along that journey without constant obstructions.

My mum has been advocating for Tom his whole life, and fighting for NDIS support since he was nine years old. When Tom turned 18, Mum attended his NDIS meeting as usual, with reports from therapists and carers that suggested what Tom requires for the next year to help him live his most fulfilling life. However NDIS representatives would not speak to her, saying as Tom was now an adult he would need to represent himself. 

Mum tried to explain that Tom's disability prevents him from understanding what his disability or money is. How on earth was he supposed to converse about appropriate funding?

Still, they insisted. So next thing you know, Tom is attending his own NDIS meeting. 

When Tom was asked about his NDIS plan, he gave no response because he didn't understand.He was then met with the following question: "Do you want to allocate someone to speak on your behalf, and if so who?" 

His response was: "Nuggets and chips."

An appropriate response for someone who didn't understand the question, but is always hungry for McDonalds.

Mum and Tom. Image: Supplied.

This lack of understanding is not a one-off scenario. The Disability Support Pension that Tom was eligible for at 16 years old, did not get approved until he was 19.

Tom requires medication twice every day. Despite Doctors and Pediatricians prescribing Tom's medications for years, the NDIS are now conducting a review of whether they're essential. So now, despite medical professionals giving the all clear, Tom does not have approval for his carers to legally administer his medicine. 

It's not only the challenges of obtaining his essential needs, but an increase in societal judgments that have made it extremely hard since Tom has reached adulthood.

When a child makes a loud noise in an indoor setting or eats with their hands, there is little to no judgement for good reason. Kids are still learning.

Well, Tom is also still in the process of learning those things, but because he is 6ft and has peach fuzz, he's on the receiving end of condescending and judgmental side eyes and stares.

Sadly, I have no doubt that this will get worse as he gets older.

My family are not the first people to go through this, and certainly won't be the last. I just hope that in the future there will be more help - and more understanding - for those supporting adults with disabilities.

Feature Image: Supplied.