Being an advocate for your child with additional needs

Being an advocate for your child with additional needs

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Being an advocate: what does it mean?

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

Many people can speak up for their own rights, needs and interests, but some find it hard. Children with 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.

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

You can be an advocate for your child with additional needs.

Advocating for your child with additional needs

If you think your child is at risk of harm, isn't having her needs met, or is being denied her rights, you might need to advocate for her.

You know and understand your child better than anyone else. If people are making decisions for and about your child, your voice and point of view, and your child's point of view, help to make sure these decisions are in your child's best interests.

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

How to advocate for your child with additional needs: steps

Step 1: understand the issue
Make sure you have a clear understanding of the issues your child is facing. 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: think about what you want for your child
Thinking about your child's needs will help you decide what you want for your child. It's important to keep an open mind because there might be solutions that you haven't thought of. Try to get as much information as possible so that you can make an informed decision about what to do. You could ask other people what they think.

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. For example, does your child also need some periods of the day in a quieter area with fewer children around?

Step 3: 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 and other professionals 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? Is your child feeling safe and happy? Would delaying make the situation worse or better?

Advocating for your child with additional needs: tips

Understand your child's needs
If you understand your child's additional needs and the therapies and supports that can help him, you'll be in a good position to speak up for his needs and interests.

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 additional needs. 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 with additional needs. It can help to have some strategies for staying calm and focused during meetings. For example, take a few slow, deep breathes, or take a break to get a drink of water. If these strategies don't work and you're struggling to stay calm, you could ask for a short break, or stop the meeting and arrange another time.

Get organised
Prepare for meetings and take a list of points and questions with you to meetings. It also helps to 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.

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 children advocate for themselves

From an early age, many children with additional needs can advocate for themselves by saying no or making simple choices.

But self-advocating might be hard if your child doesn't understand the situation, the processes or his rights, or doesn'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 some ways to help children learn to advocate for themselves.

Build your child's confidence
You can build your child's confidence by giving her responsibilities and letting her do age appropriate things on her 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 he feels 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 when your child communicates shows her that you care and are interested in what she has to say.

You can show your child that you've heard and understood by summarising what he has said. For example, 'Have I got this right? You're feeling angry because you weren't considered for the cricket team?'

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

Support your child to speak up
You can support your child by preparing her to express her point of view and ask for what she needs. For example, you could help your child write a script to use to speak to the GP or specialist. Or you could do a role play of this situation with your child. As part of the role play, you could show your child how to be calm and polite.

You can also help your child work out who he needs 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 herself, it's important to back her 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.