I Speak as ’s Mother

My name is and I write this submission as the mother of my son, .

       is 30 years old. He lives with autism, a moderate intellectual disability and hearing loss.

For thirty years, my husband and I have devoted our lives to ensuring has the opportunity to live with dignity, purpose and connection. Like every parent, we dreamed that one day our son would grow up, become independent and create a life of his own. We have had to accept that, for , independence will always look different. He will always need support.

As parents, we have accepted that reality.

What we struggle to accept is the thought that the supports that have finally given a meaningful life could now be taken away.

I am turning 60 this year. My husband is 63 and we are ageing. Unlike most parents, there will never be an empty nest for us.

We don’t stop being parents when our son turns 18, or 30, or 40.

Every year that passes brings a question that quietly sits in the back of every parent’s mind:

Who will look after my son when I am gone?

No parent should ever have to think about their own death while worrying whether their child will be safe afterwards.

Yet that is the reality for thousands of ageing parents caring for adult children with lifelong disability.

People often say the greatest fear of any parent is losing a child. For parents like us, there is another heartbreaking fear.

We desperately hope we live long enough to ensure our children are safe and supported for the rest of their lives. The thought of dying before , knowing he may lose not only his parents but also the supports that enable him to participate in the community, is almost impossible to bear.

That fear grows every time funding is reduced.

    cannot independently organise his day.

He cannot organise transport.

He cannot initiate friendships.

• He cannot independently plan activities.

• If left without structured supports, he doesn’t suddenly become more independent.

• He withdraws.

• He stays in bed.

• His anxiety increases.

• His confidence disappears.

• His mental health deteriorates.

This is why I need decision-makers to understand something fundamental.

Social and Community participation is not entertainment.

It is not coffee. It is not bowling. It is not a day out.

For , community participation is his mental health strategy.

It is how he maintains friendships. It is how he learns life skills. It is how he contributes to society. It is how he experiences purpose.

It is his lifeline.

Without it, he becomes isolated.

Isolation quickly becomes anxiety. Anxiety becomes depression. Depression becomes regression.

That is not independence. That is neglect.

For the first twenty-three years of ’s life, before the NDIS existed, our family carried everything ourselves.

We paid for therapies.

We searched endlessly for programs.

We fought to find opportunities where could belong.

We sacrificed careers, holidays, financial security and much of our own wellbeing because there simply wasn’t another option.

When the NDIS was introduced, it didn’t suddenly make life easy.

It simply gave families like ours some breathing space.

• For the first time, could participate in the community with appropriate supports.

• For the first time, my husband and I weren’t carrying every responsibility alone.

• After decades of caring, we finally experienced a small sense of relief.

• Now, just seven years later, that relief feels like it is slipping away.

• At ’s most recent plan review, his community participation funding was reduced.

• We appealed the decision.

• Rather than considering the evidence already available, we were told needed to undergo fresh assessments to prove his autism, intellectual disability and hearing loss.

       is 30 years old. Autism does not disappear. An intellectual disability does not
  

improve with age.

Yet we were required to spend more than $3,000 out of our own pocket to obtain new assessments confirming what had been known for decades.

The financial burden was significant. The emotional burden was even greater.

   had to endure assessments that forced him to relive the very challenges we have

spent his lifetime helping him overcome.

As parents, we left feeling exhausted. Emotionally exhausted. Physically exhausted. Financially exhausted.

Two years ago, when was 28, my husband and I took our very first holiday without him.

It was something most parents take for granted.

For us, it had taken almost three decades.

Our daughter had kindly agreed to care for .

Just before we left, she unexpectedly gave birth to her third child.

Our carefully planned arrangements collapsed overnight.

We had no choice but to organise emergency supports using ’s NDIS funding.

At ’s next planning meeting, we were criticised for having used more support than originally planned.

Today, under longer-term plans with very limited flexibility, families are increasingly expected to predict their circumstances years in advance.

How can anyone realistically predict the next five years?

Life changes. Families change. Health changes. Emergencies happen.

The Scheme must retain the flexibility to respond to those realities.

I want to be absolutely clear.

I support making the NDIS sustainable. I support stronger integrity measures.

I support eliminating fraud.

People who deliberately exploit the Scheme should be held accountable.

But genuine participants like should not bear the consequences of fraud committed by others.

If we reduce the supports that enable people like to leave their homes, build friendships, participate in their communities and maintain their mental wellbeing, we are not creating independence.

We are simply transferring the responsibility back onto ageing parents who are already carrying more than most people will ever understand.

Please don’t measure the value of community participation by the activity. Measure it by what it prevents. It prevents isolation. It prevents declining mental health. It prevents family breakdown. It prevents unnecessary hospital admissions. It prevents crisis.

Most importantly, it gives people like the opportunity to live a life with dignity, purpose and belonging.

As I get older, I don’t lie awake worrying about myself.

I lie awake worrying about .

Every parent of an adult child with lifelong disability asks the same question: What will happen to my child when I’m gone?

The NDIS was created to help answer that question.

Please don’t allow these reforms to make it harder for families like mine to believe that our children will be safe, connected and supported long after we no longer can.