For many parents of children with disability, there is a question that sits quietly in the background for years.

Sometimes decades.

It surfaces during hospital appointments.

It appears during NDIS planning meetings.

It arrives unexpectedly in the middle of the night.

And it often sounds something like this:

“What will happen when I’m no longer here?”

It is one of the most important and emotional questions a parent can ask.

Yet it is also one of the least discussed.

 

A Question Asked Out of Love

Parents spend years advocating for their children.

They attend appointments.

Coordinate supports.

Navigate funding systems.

Build routines.

Solve problems.

Celebrate milestones.

And provide the unconditional support that only family can offer.

Over time, many become experts in their child’s needs, strengths, goals and aspirations.

Which is why the thought of not being there one day can feel overwhelming.

The concern isn’t simply about care.

It’s about safety.

Stability.

Relationships.

Housing.

Decision-making.

Quality of life.

And whether the person they love will continue to have opportunities to thrive.

 

The Reality Few Families Discuss

The reality is that most parents hope they will always have time to prepare.

But life doesn’t always follow a predictable plan.

Ageing.

Illness.

Unexpected events.

Changing family circumstances.

These can all bring future planning into sharp focus.

While the conversation can be uncomfortable, avoiding it rarely makes it easier.

In many cases, planning early creates greater certainty and more choices later.

 

Independence Doesn’t Happen Overnight

One of the biggest misconceptions about future planning is that it begins when parents can no longer provide support.

In reality, it begins much earlier.

Future security is often built gradually over many years through:

• Developing life skills
• Building confidence
• Expanding social connections
• Creating community relationships
• Exploring housing options
• Strengthening decision-making skills
• Establishing trusted support networks

Every opportunity to build independence today can create greater security tomorrow.

 

The Power of Relationships

When families think about the future, housing is often one of the first concerns.

But relationships may be even more important.

Research consistently shows that social connection is one of the strongest contributors to wellbeing, resilience and quality of life.

A strong future plan isn’t only about where someone lives.

It’s also about who is in their life.

Who knows them.

Who notices when they are struggling.

Who celebrates their successes.

Who helps them stay connected to their community.

The strongest support networks are rarely built overnight.

They are often built through years of participation, friendship and community involvement.

 

Creating a Circle of Support

Many families find comfort in developing what is often called a “circle of support.”

This may include:

• Family members
• Friends
• Neighbours
• Support workers
• Community members
• Advocates
• Professionals

The goal is not to replace parents.

It is to ensure that support, guidance and connection continue beyond any one person.

A resilient support network reduces reliance on a single individual and increases long-term stability.

 

Important Conversations to Have

Future planning looks different for every family, but some important areas to consider include:

Housing

• Where would the person like to live?
• What housing options may suit their needs?
• What level of support may be required?

Decision-Making

• How can the person’s voice remain central to decisions?
• What formal arrangements may be necessary in the future?

Financial Planning

• Are there arrangements in place to support long-term financial security?
• Have professional financial and legal advisors been consulted?

Support Networks

• Who are the trusted people in the person’s life?
• How can those relationships be strengthened over time?

Goals and Aspirations

• What does the person want their future to look like?
• What opportunities can help them build towards that vision today?

 

What Psychology Tells Us About Security

Psychologists often talk about the importance of a “secure base.”

People generally thrive when they feel connected, supported and confident that help will be available when they need it.

This applies not only to children, but throughout life.

When families engage in future planning early, they often report reduced anxiety and greater confidence about what lies ahead.

Planning does not eliminate uncertainty.

But it can create a greater sense of control.

And a sense of control is one of the strongest protective factors for wellbeing.

 

Reframing the Question

Perhaps the question isn’t:

“What happens when parents are no longer there?”

Perhaps the better question is:

“How do we help someone build a life that can continue to flourish regardless of who is providing support?”

That shift changes everything.

The focus moves from fear to preparation.

From dependence to empowerment.

From uncertainty to possibility.

 

What the Research Tells Us

Research across disability, ageing and social participation consistently points to the same themes.

People experience better outcomes when they have:

• Strong social connections
• Stable housing
• Opportunities for community participation
• Meaningful relationships
• Choice and control over their lives
• Consistent support networks

Future planning is not simply about preparing for an event.

It is about creating the conditions that allow a person to continue living a meaningful and self-directed life.

 

Looking Forward

Every parent hopes their child will be supported, respected and valued long into the future.

While no plan can answer every question, early planning can provide something incredibly important:

Confidence.

The confidence that supports are in place.

The confidence that relationships have been built.

The confidence that opportunities exist.

And the confidence that a good life is not dependent on any single person carrying the entire responsibility alone.

Because ultimately, the goal is not simply preparing for a future without parents.

It is helping people build a future that remains full of possibility, connection and purpose.

 

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Need Help Planning for the Future?

Whether you’re exploring housing options, building independence, strengthening support networks or planning for the years ahead, the Lion and Mouse team is here to help.

📞 1300 048 355
🌐 www.lionandmouse.com.au

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Lion and Mouse Australia Ltd is a registered Australian charity committed to empowering people with disability, supporting families and helping people build confident, connected and meaningful futures.

 

 

Addenda: What Is a Circle of Support?

A Circle of Support is a group of trusted people who commit to helping a person with disability live a good life, pursue their goals, maintain relationships and navigate future challenges.

The focus is not on making decisions for someone.

The focus is on supporting them to make their own decisions, build connections and achieve greater independence.

A Circle of Support might include:

• Parents
• Siblings
• Extended family
• Friends
• Neighbours
• Teachers
• Disability advocates
• Support workers (where appropriate)
• Community members
• Employers or mentors

Every circle looks different.

Step 1: Start With One Question

Before identifying people, ask:

“Who genuinely cares about this person’s future?”

You might be surprised by the answers.

Many families initially assume they have nobody, but when they think carefully, they often identify:

• A trusted aunt or uncle
• A family friend
• A long-term therapist
• A neighbour
• A sporting coach
• A former teacher
• A church or community member

The goal is not to find experts.

The goal is to find people who care.

Step 2: Begin Small

One of the biggest mistakes is assuming a Circle of Support needs ten people.

Start with two or three.

A small, committed group will often achieve more than a large group of occasional participants.

A first circle might include:

• A parent
• A sibling
• A trusted friend

That’s enough to start meaningful conversations.

Step 3: Talk About the Future

The first meeting doesn’t need an agenda full of paperwork.

Instead, discuss questions such as:

• What does a good life look like?
• What are the person’s hopes and dreams?
• What worries them?
• What worries the family?
• What skills would help build independence?
• Which relationships should be strengthened?

The conversation should focus on possibilities, not problems.

Step 4: Build Connections Beyond Family

A strong Circle of Support should gradually expand beyond immediate family.

This is important because families age and circumstances change.

Some useful questions include:

• Who will still be involved in 10 years?
• Who knows this person outside the family?
• How can new friendships and community connections be encouraged?

Research consistently shows that strong social connections contribute significantly to wellbeing, resilience and quality of life. The broader the network, the stronger the foundation for the future.

Step 5: Create a Simple Future Plan

You don’t need a 100-page document.

Start with a simple plan that records:

Important People

Who matters most?

Important Places

Where does the person feel connected?

Important Goals

What are they working towards?

Support Needs

What support helps them succeed?

Future Priorities

What needs attention over the next 1-5 years?

This creates a shared understanding amongst everyone involved.

Step 6: Meet Regularly

Many successful circles meet:

• Quarterly
• Every six months
• Annually

The purpose isn’t administration.

It’s maintaining relationships and keeping the conversation going.

Sometimes the most valuable outcome is simply ensuring people remain connected.

What Makes a Circle Strong?

The strongest circles tend to focus on:

✅ Relationships

✅ Community participation

✅ Independence

✅ Choice and control

✅ Long-term planning

✅ Shared responsibility

They are less focused on services and more focused on helping someone build a meaningful life.

A Thought Worth Remembering

One of the founders of the Circle of Support movement, Judith Snow, often spoke about moving from a life based on services to a life based on relationships.

That’s really the heart of the idea.

Services matter.

Funding matters.

Supports matter.

But relationships are usually what remain when systems change.

A Circle of Support isn’t really about planning for someone’s death or a future crisis.

It’s about ensuring a person has a network of people who know them, value them and will continue walking alongside them throughout life.

That is one of the most powerful forms of safeguarding, advocacy and future planning any family can create.