Julie McKinney, MS
June 8, 2022

How to advocate for your child with a disability…and get results

Learn how to advocate for your child and get results with these 6 practical tips that will secure their rights and yours, too.

(Listen to this content instead on our Podcast— Just Needs Episode 19 — 6 ways to be a fierce advocate for your child)

Parenting a child with a disability or a learning difference is not easy! We all learned that in Parenting 101, right? (Well, not really, but now we know!) As we start working with school services and government red tape, we realize that we sometimes have to push a little to advocate for our kids’ needs. Here are 6 tips about how to advocate for your child and get results:

1. Know your rights. Fall back on the law when needed.

There are laws that protect the rights of people with disabilities. The ADA (Americans with Disabilities Act) and Section 504 of the Rehabilitation Act ensure their right to equal access to all public services. IDEA (Individuals with Disabilities Education Act) guarantees them a “free and appropriate education (FAPE)”. Learn about your child’s rights and use that knowledge to push for what you need. If your child has an IEP (Individualized Education Program) and the school says they can’t provide a service that is written in it, then just say “IDEA requires it, period. You have to figure it out.” It’s more effective to pass it off to the law than to get angry.

2. Keep your child at the center of everything.

Click to Read Transcript

Families and Stories: You know your child best, with Neda

[Neda Fanguy] You can kind of be made to feel like you’re making something out of nothing, you know?

But you know your child best, right, better than anyone else.

And so, I would say, you know, be their voice.

Start with the assumption that everyone’s goal is to help your child. Keep their needs at the heart of everything. No one will argue with this. Sometimes it seems like you personally are in a battle with the school or other service provider. Remind them that your mutual goal is to help your child and provide what they are entitled to by law. “What can we do together to meet my child’s needs here?”

3. Be calm but firm. Try to keep emotions out of it as much as possible.

It’s so easy to get emotional, especially when you’re concerned about your child. But it doesn’t help the situation. It’s more effective to be calm, polite and rational. Be firm but not oppositional. “One way or another, we have to make this work. Who has a different suggestion?”

4. Keep records in case you have to prove what you asked for, what the school agreed to, and when.

Every time you communicate with the school or a government agency, keep a written record with a date. It can be a letter (keep a copy) or an email. Just something you can show them later to prove what was said. This will help to hold them accountable and make them stick to their required timeline. For example, if you ask for a special education evaluation, the school has 5 school days to get your consent, and 30 school days to do it. If they don’t, you can prove to them when you made your request.

5. Know the chain of command and move up to the next level, if needed.

Click to Read Transcript

[Neda Fanguy] First and foremost, for all of the other parents out there, I would say if you have a gut feeling that something is not right, do not ignore it.

You know, whether it’s mother’s intuition or what have you, always tell a provider what it is that you’re afraid of.

And if they don’t listen, or they minimize it, tell another one, or tell them again and continue to do that.

Learning how to advocate for your child, means learning how the system works. If you have a complaint with school services, start with your child’s teacher or IEP team. If they are resistant or unresponsive, the next step may be the principal. If that doesn’t help, contact your school district’s special education office. Then the state office. Learn about the dispute resolution process, and know who the people and departments are. Still getting nowhere? Call your state’s Parent Training and Information Center. Every state has at least one to support parents of kids with disabilities and help you advocate for your rights. The bottom line: don’t settle. Go to the next level.

6. Keep an eye out for discrimination or profiling.

Everyone wants to help children succeed. But sadly, there are still unfair practices and unequal treatment. We know that Black and Latinx students get disciplined significantly more than white students. We know that family culture plays a role in how kids interact at school, and that “acting up” is often misunderstood. Be on the lookout for students being treated differently or inappropriately, even if it’s not your own child. If you see racist or unfair practices, speak up. Talk to the leadership. Talk to other parents. Make a stink. (But try to stick to tip #3 if you can!)

It’s not easy to advocate effectively. No one wants to be the squeaky wheel, but sometimes we have to be. If you follow these tips, you can look out for your child’s interests without being too squeaky. Stay calm, learn your stuff, and good luck. It will be worth the effort!

Learn More:

  • Julie McKinney, MS

    Director of Training / Health Literacy Specialist

    Julie McKinney has over 25 years of experience in health literacy, plain language, and adult education. She has deep expertise in writing information so it’s easy to understand, and has developed trainings for educators in clear communication.

    At Exceptional Lives, she ensures that our content is clear and friendly. She also works to strengthen relationships with community partners, and designs trainings that help them connect with families.
    Julie also has experience parenting kids with ADHD, learning disabilities and significant intellectual disability. She has ushered her own children through schooling and transition to adulthood, and is committed to helping make this process easier for others.

    Her core view is that good relationships are the key to just about anything we hope for.

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