Advocating for Yourself (or Your Child) in the Health Care System

Cardinal Innovations Healthcare — October 19, 2021 — 4 min read
Have you ever felt lost or unheard during a health care appointment? Self-advocacy may be the solution.

“Self-advocacy is about knowing what’s important to you. It’s about making sure you have the opportunity to voice that—whether for yourself, your child, or your family,” Nicole Six said. Nicole is the director of our Child Program and has spent her career helping families involved in the behavioral health care system.

In this article, she shares how you can practice self-advocacy in every step of your health journey.

Before Services

Here’s how to practice self-advocacy before you even meet your provider for the first time.

Do Your Research

“If you have access to the internet, look up the provider before starting services,” Nicole said. “Read up on the service, too.”

Nicole explained that researching ahead of time will help you during your appointments. When you better understand the service, it’s easier to come to your provider with questions you want answered.

Figure Out Your Goals

“Come up with your own goals,” Nicole said. What do you want to accomplish during this service or assessment? Or what is your goal for your child? “Knowing this answer at the beginning will help you decide if a service is a good fit for your family.”

During Each Service Appointment

Practicing self-advocacy is even more critical during your health care visits.

Ask Questions and Press Pause

This is the time to ask your prepared questions. You may also want to share your goals with your provider, even if they don’t ask.

“You may not have time to prepare ahead of time—it happens,” Nicole said. However, this doesn’t mean you should feel lost during your appointment.

Nicole stressed that when you start a new service, your provider should be walking you through the service and what to expect from it. “If that’s not happening,” she said, “I would stop the conversation and ask for that to happen.”

It’s also important to speak up if your provider:
  • Uses unfamiliar medical terms
  • Uses acronyms you don’t know (ex. “ACT” instead of “Assertive Community Treatment”)
  • Tells you something that you don’t understand
You should always feel comfortable stopping your provider if you don’t understand. Press “pause” and ask them to explain further.

Red Flags and What to Do About Them

What are signs that a provider isn’t right for you? Nicole shared the “red flags” you should look out for when receiving a service:
  • You’re having communication issues at the beginning. The provider doesn’t call you back. They don’t respond to your emails. They never answer the phone.
  • The provider doesn’t have experience with you and your family’s unique needs.
  • The provider isn’t asking you any questions about yourself or your child.
  • You don’t feel involved in the process. The provider isn’t interested in learning about your goals.
  • The provider never shows up on time. The provider doesn’t ever follow up with you.
If these issues continue to come up, it may be time to request another provider.

Can Medicaid Recipients Choose Their Provider?

“Our members don’t always recognize that they have a voice to say something’s not working,” Nicole said. “Whether you have Medicaid, private insurance, or no insurance, you have a choice about who your family works with. You have a choice about what types of services you receive.”

What If Another Provider Just Isn’t Available?

In some circumstances, your choices may be limited. Often, there are fewer providers in rural areas. And not all providers accept patients with no insurance.

In these cases, “you may have to get a little creative,” Nicole said. “If you can’t change agencies, you might be able to change clinicians. Maybe you could see a different doctor. You don’t know unless you speak up.”

Self-Advocacy Works Better When You’re Kind

When you begin to notice these red flags, it’s your right to request that something change. However, Nicole encourages members to go about it the right way.

“You want to make sure you’re kind—but direct. It’ll go a long way when you’re learning to advocate for yourself and your family,” she said. “Speaking up respectfully will help ensure people hear what you have to say and pivot to meet your needs.”

Start Practicing Self-Advocacy Now

Most health care professionals have your best interests at heart. But they have bad days, too. So, always remember that you’re your own (or your child’s) best advocate.

“You are the expert on yourself and your own child,” Nicole said. And if you don’t speak up, no one will.
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