One of the most common questions I get from families is how to be more effective advocates for their child who has a disability. There are a lot of elements in becoming a great advocate, many of which I am still learning myself. However, I'd argue that there are three key components that are great starting points. PS- I plan to do more thorough posts on each of these topics, but this should get you started.
- Understanding your child's disability. A great starting point in becoming an effective advocate is to try and learn as much as you can about your child's particular disability. And don't just learn about the symptoms, treatments, and potential outcomes....try to find information about what it feels like to live and navigate the world with that disability. How can you advocate for what your child needs if you don't know how they experience the world and the potential challenges they may face?
- If you can find first person accounts from adults with the same disability as your child about their struggles navigating the world, please read those and engage with those advocates. They will offer a nuanced insight that nobody else will be able to give you.
- Connect with organizations who do advocacy and awareness work about the particular disability.
- Connect with other families who are raising kids with the same disability and intentionally seek out connections to families who have kids older than your own. They can help you anticipate challenges as your child grows.
- Attend workshops, conferences, and webinars related to your child's disability and never stop learning. You will never know all there is to know.
- If your child is old enough and able to advocate for themselves, listen to their concerns and struggles. The best source of information about what your child needs is your child.
- Knowing your & your child's rights. A lot of advocacy work is ensuring that the person living with a disability has access to all of the resources and experiences that they are entitled to. How can you be a great advocate if you don't know what to ask for? This can be somewhat boring and tedious reading, but it is well worth it. The fastest way to get what you need is to be able to hold people and organizations accountable to the uphold law.
- Knowing how to get resources. This is a tough one because how you find resources varies by community. Sometimes the medical community is well informed, sometimes they aren't. Sometimes there is a resource center, sometimes there isn't. Sometimes you have a great counselor or social worker available at a hospital or school, sometimes you don't.
- More often than not, figuring out what resources are available in your community happens by word of mouth which is why it's so important to build connections with others families on a similar journey. The best resources I've ever found have been suggestions from other families.
- I'd also recommend looking for places that might be "hubs" of information like therapy providers. They've usually worked with a number of clients and are often well informed about the resources their clients have accessed and are connected to other providers in the area.
- Social Workers are also often really great sources of information because they are professionals who focus on connecting people to resources. It's their job to know what's available.
- As you think of resources your child might benefit from, write them down on a list. Too often I think of something I'm interested in learning more about, but then when we are at the doctor or with somebody who might be able to answer my question, I totally forget.
These three elements of becoming an effective advocate are just a starting point, but they are skills that will benefit your child immensely and are components you can build on for years to come.
What are some of the barriers you face in advocating for your child? And what skills have been critical to your advocacy? Let us know!