Learning to be your child’s best advocate

If you’re caring for a child with complex needs, there’ll be times when you will feel the need to step in and advocate on their behalf. The team at Kiind, an Australian nonprofit supporting families raising children with disability, has put together the following steps to help you reach a positive resolution:

1. Articulate the issue
Make sure you fully understand the issue and are able to clearly articulate it to your intended audience.

2. Be clear about what you want
Think carefully about what you want for your child. Gather as much information as you can to make an informed decision and if you belong to a peer support group, it may be helpful to seek the opinions of others in similar situations. It’s important, however, to keep an open mind because there may be solutions that you haven’t yet considered.

3. Present a solution, not a problem!
Presenting a solution is a faster and more effective method of reaching an acceptable conclusion.

4. Know your child’s rights
Find out who you need to speak to and what you can expect. This will save you hours of frustration having to reiterate your concerns to different people. You’ll also be a more confident and effective advocate if you know your child’s rights and the rules of the system within which you’re operating.

Familiarise yourself with the medical support to which your child is entitled, State education laws, relevant policies and procedures as appropriate to the situation. You can find relevant legislation regarding your child’s rights under the ‘Be heard’ section of the Kiind website.

For UK-based readers, head to the government information on disability rights here. Are you in the US? Head here.

5. Be prepared
Prepare for meetings and take a list of questions. Keep a timeline of activity with names of who you spoke to, together with emails and phone calls and a written record of meeting outcomes. This is important and could save you lots of heartache and frustration, particularly if you need to reiterate the situation to many people or the person making the decisions leaves and is replaced by someone else.

6. Stay calm
Staying calm and polite is likely to facilitate a more productive discussion. If you’re struggling to stay calm, ask for a moment so you can calm down and gather your thoughts. If this doesn’t work, you could ask for a short break, or stop the meeting and arrange another appointment.

7. Get support
Speaking to other parents who’ve had similar experiences or joining a support group can help you with useful information and emotional support.

Have you got some advocacy advice to share? We’d love to hear it. Get in touch with our team at hello@hibi.health.

These tips were originally published by Kiind, an Australian nonprofit supporting families raising children with disability. Find more useful resources on their website.