Advocacy 101 for Parents and Caregivers

July 24, 2024 Chromosome 22 Central

Becoming your child’s advocate

When you have a child with extra needs, you might not always have everything you need to help them be the best they can be. Our children will require additional resources, and sometimes you have to work hard to ensure they get them. People may not automatically know what your child needs, and you are going to be stepping up to express concerns and offer suggestions to others involved in supporting your child in the community, the school, or with their medical care team.

Advocacy will happen in many different ways. It will involve learning about and teaching others about your child’s disorder and what they need; it will be ensuring that your child gets all the services and benefits they are entitled to; it may be ensuring they get proper medical care and getting second and or third opinions; it may mean ensuring that your child gets what they need for their school success – advocacy can look like a lot of things.

You will learn to know when your child is not getting what they need and you will find ways to become an effective communicator, how to be proactive, organized, well-prepared, collaborative and strong. You will become the voice of your child.

Not everyone comes with a natural skill set to become a strong advocate for their child, and so we are offering a few recommendations that may help. The resources may be specific to different diagnoses like autism but they will be universally relevant. There are many websites you can search for in addition to these which are great places to start. Check them out and bookmark them for when you may need them:

Holland Bloorview Kids Rehabilitation Hospital: Advocacy Toolkit (44 pages)
The Essentials of Advocacy: A Parent’s Guide to Advocating for their Child with Special Needs
Being an advocate for children with disability, autism or other additional needs
Easter Seals Parent Advocacy Kit

If you need support, encouragement or motivation, connect with other parents on our social media sites. Likely someone has already walked the same path and can offer some advice when you need it!

“Advocate for what you need, utilize all the resources – they won’t just give you everything. I learned slowly but surely I have to fight and appeal for all his needs.”