When you can no longer care for your child with disability: planning your adult child's future home

What happens to them when I can’t care for them any longer? This is a question that has probably been in the back of your mind for a long time.

You have cared for your child for years, well into their adulthood. You know their routines better than anyone. How they like their tea, what calms them on a bad day and the song that always makes them happy.

And somewhere in the quiet, the question comes: what happens when I can no longer do this?

If you have asked yourself that, you are not alone. Many parents of adults with disability carry the same worry for years without saying it out loud.

The good news is that there are better answers than just waiting to find out. You can start planning, now, together.

Why planning early matters: the research 

When there is no plan, a move can happen during a crisis. A parent falls ill or passes away, and an adult with disability has to move quickly – sometimes into whatever home has a bed that week. Everything changes at once, at a time of grief: the house, the people, the routine.

Research backs this up. When Australian researchers spoke with adults with intellectual disability who had moved out of the family home, many described more independence and new connections. One sister said her brother now goes to the footy every week with his support worker: 

All those sorts of things that never ever would’ve happened if I was caring for Terry at home.

Letting go is not easy. As one brother put it: 

I think it’s a risk to do this. But it’s a worthwhile risk for the benefits I think that I’m seeing in Ryan’s life.

Why a planned move is different

A planned move looks very different:

• Your son or daughter helps choose where they live and who they live with

• They can try short stays first and settle in slowly

• You are there to share everything you know with the new support team

• You get to see them happy in their new home.

That last one matters more than most parents expect. Planning early means you do not have to wonder how it will turn out. You get to watch it work.

Start with a conversation

Your son or daughter has the right to be part of this decision. It is their future and their home after all

Start gently by asking:

• "Have you ever thought about living with friends one day?"

• "What would your perfect home look like?"

• "Who would you like to live near?"

Some people will have strong ideas. Others will need time, pictures or a visit to understand what moving out could mean. That is okay. This is not just one conversation. It is many, over months or even years.

Listen for what lights them up – a garden, a pet, being close to their day program, being near a brother or sister. Those details will guide every decision that follows.

Six steps to plan your adult child's future home

1. Talk to your family

   Bring other family members into the plan early, especially siblings. Be clear about what you are asking of them – and what you are not. Many brothers and sisters want to stay close and involved without becoming full-time carers. Saying that out loud can take pressure off everyone.

2. Make home and living a goal in the NDIS plan

   If your son or daughter is an NDIS participant, talk to their support coordinator or Local Area Coordinator about adding a goal around living more independently. This opens the door to the supports that make moving out possible, including Supported Independent Living (SIL) and, for people with very high support needs, Specialist Disability Accommodation (SDA).

   Read our guide to NDIS disability accommodation in Sydney to understand how SIL and SDA work.

3. Try short stays first

   A weekend away from home can be a big step. Respite and short stays let your son or daughter experience living with others and being supported by new people – while home is still there to come back to.

   It is a chance for you to practise letting go, too. Many parents find the first night apart is harder for them than for their child.

4. Visit homes together

   Look at homes in areas your son or daughter knows. Ask to meet the support team and, where possible, the people who already live there. Pay attention to how your son or daughter responds. They will often tell you – in words or without them – where they feel at home.

5. Put the legal and money side in order

   Once your son or daughter turns 18, you may no longer automatically be their legal decision-maker. That surprises many parents.

   Talk to a lawyer who understands disability planning about:

   • Your will. Make sure it reflects your plans for your son or daughter and anyone you want to step into your role.
   • Guardianship and decision-making. Find out what options exist in NSW if your son or daughter needs help to make some decisions. NSW Trustee and Guardian is a good place to start.
   • A Special Disability Trust. This lets family set aside money for the care and accommodation of a person with severe disability, generally without affecting their Disability Support Pension, up to a limit. Services Australia explains how Special Disability Trusts work.

6. Write down what only you know

   Nobody knows your son or daughter like you do. Capture it before it is needed.

   Write a simple "all about me" guide. Include:

   • Daily routines, from waking up to bedtime
   • Favourite foods, music, shows and places
   • What helps on a hard day, and what makes things worse
   • Health needs, medicines and the names of their doctors
   • The people who matter most to them
   • Your hopes for their future.
     

   Keep it somewhere family can find it, and update it every year. One day, it will help a new support worker understand your son or daughter in a week instead of a year.

It is okay to feel everything

Planning a move can bring up guilt, fear and relief – sometimes all in one afternoon.

You may feel like you are giving up. You are not. You are doing one of the most loving things a parent can do: making sure your child is safe and happy long after you can be the one to make it so.

Talk to other parents who have been through it. Lean on the people who support your family. And be gentle with yourself.

What a planned move looks like at Wesley Mission

Wesley Mission has supported people with disability across Sydney for more than 75 years. As an accredited, registered NDIS provider and a not-for-profit, our motivation is never commercial. It is to help every person we support live a better life.

Our team of more than 300 staff can support your son or daughter before, during and after a move:

• NDIS disability accommodation. Supported homes across Western Sydney, inner Sydney and north-west Sydney, with Supported Independent Living (SIL) and Specialist Disability Accommodation (SDA).

• In-home and community support. Help with daily tasks, practical life skills and getting out into the community – a good way to build independence while your son or daughter still lives at home.

• Wesley LifeSkills day program. A place to make friends, grow confidence and learn everyday skills, with activities from cooking and music to woodworking and sport.

• Supported employment. Meaningful work in supportive, inclusive workplaces, with ongoing support tailored to each person’s goals.

If your son or daughter already comes to LifeSkills or works with us, they can keep those familiar faces and routines even as their home changes. 

And because mResearch backs this up, many of our support workers stay with the same people for more than a decade, the people who know them best are more likely to still be there years from now. In our Glenmore Park home, Michael and Greg have lived together for 12 years, and the home's manager has been with them for 15. Read how five men built a home and a family together.

When your family is ready, here is how it works:

1. Contact us. Tell us about your son or daughter and what you are hoping for.

2. Share their needs. We will get to know their goals, routines and support needs.

3. Tour our homes. Visit together and find a place that feels right.

4. Meet the housemates. Your son or daughter meets the people they could live with before deciding.

5. Move in. We help them settle in at their own pace.

What our team sees

The families who plan ahead give their son or daughter something precious: time. Time to visit, to meet housemates, to try a few nights away and come home again. When a move happens slowly, we get to learn from the parents – the little things only they know, like how someone takes their tea or what helps on a hard morning.

 

Parents tell us they worry no one will love their child the way they do. We cannot replace a parent. But we can promise to know their child well, and to stay.

 

Team Leader, Wesley Disability Accommodation 

 

You do not have to have all the answers today

You just need to start.

Call our team on 1300 086 906 or email ndis@wesleymission.org.au. We will listen, answer your questions and help you take the first step – at a pace that suits your family. We reply to every enquiry within 24 hours.