Being an advocate for children and teenagers with disability, autism or other additional needs

Being an advocate: what does it mean?

Advocacy is promoting and defending a person’s rights, needs and interests.

An advocate is someone who speaks up for others. An advocate might find information, go to meetings as a support person, or write letters for another person.

Many people can speak up for their own rights, needs and interests, but some find it hard. Children and teenagers with disability, autistic children and teenagers, and children and teenagers with other additional needs often struggle to speak up for themselves or don’t have the ability to do it. They might need support from an advocate.

Why your child with disability, autism or other additional needs might need you to advocate

If you think your child is at risk of harm, isn’t having their needs met, or is being denied their rights, you can advocate for them.

You know and understand your child better than anyone else. If people are making decisions for or about your child, you can make sure these decisions are in your child’s best interests by being their advocate.

Other people can help you advocate for your child. You could ask a family member, friend, volunteer or professional advocate to help you.

How to advocate for your child with disability, autism or other additional needs

Step 1: understand the issue
Make sure you have a clear understanding of the issues affecting your child. For example, your child’s school might say they’re having difficulty getting funding and support to ensure your child is included in class activities throughout the day.

Step 2: understand your child’s needs
If you understand your child’s needs and the supports that can help them, you’ll be in a good position to speak up for your child’s needs and interests.

Step 3: think about what you want for your child
Knowing your child’s needs will help you decide what you want for your child.

There might also be solutions that you haven’t thought of, so try to get as much information as possible. You could ask other people what they think. This way you can make an informed decision about what to do.

For example, you might think that your child could take part in all class activities if the teacher adjusted the activities to better suit your child’s level of understanding.

You need to be sure that what you want is in your child’s best interests. This includes thinking about any possible negative consequences and how they could be managed. For example, does your child also need some periods of the day in a quieter area with fewer children around?

Step 4: present a solution
Presenting a solution is more effective than complaining. For example, you might say, ‘I understand this is a challenging situation. I want to work closely with you to make sure my child’s learning needs are met using the resources you have’.

Asking questions can also help. For example, you might say, ‘Can you let me know what adjustments you’re making so that my child is included in activities?’

You could also think about your priorities. For example, do things need to change right now, or is it better to wait?

Inclusion in early childhood education, school, community groups, family activities, friendships, playgroups and so on is essential to development, learning and wellbeing for children and teenagers with disability, autistic children and teenagers, and children and teenagers with other additional needs. Full and meaningful inclusion in society is also one of the rights of all people with disability.

Tips to help advocating go well

Know your child’s rights
You’ll be more effective as an advocate if you know your child’s rights and the rules of the system you’re advocating in.

For example, the Disability Standards for Education say that schools must make ‘reasonable adjustments’ to ensure equal opportunities for children with disability. You could find out what ‘reasonable adjustments’ means and what adjustments your child is entitled to.

It’ll also help to find out who’s responsible for what in your child’s school or other services your child uses. This way you’ll know who to talk to and what you can expect.

If you have time, it can also help to get familiar with the UN Convention on the Rights of Persons with Disabilities, which applies in Australia.

Stay calm
If you stay calm and polite, people will be more open to your point of view. Try to focus on solutions, stick to facts, ask questions and make suggestions rather than demanding things.

For example, ‘Kaela has cerebral palsy, so she plays soccer a little bit differently. Could we look at a medical dispensation to ensure that she’s not penalised for breaking the rules? It would be great for her and great for the club’s reputation for being inclusive’.

It’s normal to feel intense emotions when you’re advocating for your child. It can help to have strategies for staying calm and focused during meetings. For example, take slow, deep breaths, or take a break to get a drink of water. If these strategies don’t work and it’s hard to stay calm, you could ask for a longer break or stop the meeting and arrange another time.

Get organised
Prepare for meetings and take a list of points and questions with you. Keep written records of meetings, emails and phone calls. Include the date and time, who you spoke with or met, what you discussed, and any action points and review dates. You can also keep relevant information and reports that support your case.

You could keep all these documents on your computer, in a folder or both.

Get support
Speaking to other parents who’ve had similar experiences or joining a support group can help you find useful information and emotional support. You can also get support from a volunteer or paid advocate, who can explain the law and your child’s rights. This person can go to meetings with you too.

Advocacy services have professional advocates who are experienced in speaking up for children and teenagers with disability, autistic children and teenagers, and children and teenagers with other additional needs. You can find advocacy services in your area by contacting your local community centre, local council, library or neighbourhood house. Your local disability service should also be able to help.

Helping your child with disability, autism or other additional needs advocate for themselves

Many children and teenagers with disability, autistic children and teenagers, and children and teenagers with other additional needs can advocate for themselves – for example, by saying no or making simple choices.

But self-advocating might be hard if your child doesn’t understand the situation, the processes or their rights, or they don’t feel confident to speak up. These situations might come up when your child starts school or goes to the GP, for example.

Here are ways to help children learn to advocate for themselves.

Build your child’s confidence
You can build your child’s confidence by giving them responsibilities and letting them do age-appropriate things on their own – for example, going to the local shop to buy some milk.

You can also encourage your child to feel confident to speak up if they feel something isn’t right. One way to do this is by reading stories with your child about characters who stand up for themselves and others. Your local librarian could help you find some books.

Listen to your child
Actively listening to your child shows that you care and are interested in what they have to say.

You can show your child that you’ve been paying attention and are trying to understand by summarising what they’ve said. For example, ‘Have I got this right? You’re feeling angry because you weren’t considered for the cricket team?’

Some children with disability might have communication impairments and need support to express themselves.

Prepare your child to speak up
You can prepare your child to express their point of view and ask for what they need. For example, you could help your child write a script to use to speak to the GP. Or do a role play of this situation with your child. Or make sure your child’s communication device has vocabulary for speaking to the GP.

You can also help your child work out who they need to talk to about an issue. You could explain why this is the best person to talk to and what your child might expect the person to do or say.

If your child experiences any negative consequences from being an advocate for themselves, it’s important to back them up. For example, if the teacher is annoyed with your child for asking to be included in the cricket team, you could ask the teacher for an appointment to discuss the issue.

Advocacy support for families with disability, autism or other additional needs

The following organisations can help you advocate on your child’s behalf: