Advocacy is an important part of caring for a child with special health care needs. This page will explain different types of advocacy and offer some examples of how to advocate for a child and other individuals with disabilities.

The sooner we learn to advocate—by being informed and having a strong voice for our children—the better things can become for our child and family. These advocacy tips, based on years of experience and gathered from hundreds of parents and caregivers, can be used with your child’s doctor, hospital, clinic, therapists, preschool, child care, classroom, and with family and neighbors. While you can advocate in support of a large group, you’ll always start advocating, of course, with one child…yours.

• As soon as possible, connect with a family who also has a child with special needs. Talking with a parent who has a similar situation may be helpful and empowering. Other parents know what you are going through and can be your best teachers in this new, unfamiliar world.
• Then, over time and as you are able, do the following:
  • Learn everything you can about your child’s diagnosis and needs, from your pediatrician, early intervention specialist, therapist, other providers, and other parents.
  • Find out about services for your child, such as special clinics, pediatric specialists, therapies, equipment, early childhood programs, and state and private agencies. Ask about financial eligibility, free services, and, most importantly, where to get the best care.
  • Keep records of all phone calls, doctor visits, insurance bills, notices, and forms about your child. Always take notes, with the date you met or called and the name of the person you spoke with. If you’re not a good note taker, bring a friend who is, or use a tape-recorder, or the voice memo feature on your phone. Ask for copies of everything. Put all your child’s papers and information in one place—a box in the kitchen, a notebook, or a drawer, a place that works best for you.
  • Become an expert on your child’s health insurance plan, whether it’s private or public such as Medicaid. Know the benefits that are covered. Read everything from your health insurance.
  • Be open to learning new things. There are always at least two sides to an issue. See what the challenges may be to better know how to advocate your side.
  • Build strong partnerships with the experts in your child’s life. Your child’s primary care doctor, specialists and therapists can be trusted partners that can help advocate for proper services and support that your child and your family may need.
  • Know that YOU are your child’s best advocate. No one else can do the job as well. Use all your information, sources, and skills to advocate, and try to advocate with kindness and understanding. Mentor a sibling or friend to do so too, for the times that you won’t be able to be there.
  • Teach your child self-advocacy skills as soon as possible. You can support the growth of these skills by being an example, but also be sure to offer chances for your child to speak and advocate for himself, about his needs and desires, about his life and future. Encourage your child to speak with providers about his special needs to however he can.
  • Take care of YOU, which means advocating for yourself as well. Have a backup plan for those times when you need someone else to take the lead. No one will know that you need help with something unless you speak up. Sometimes it will seem harder to advocate for yourself than it is for your child, but you can’t really take care of your family if you don’t care for yourself, too!

Talking Tips:

Parents are often the strongest advocates. You have the real life stories and experience to share—you can make a difference. Your advocacy will start with your own child, but there will be times when you are able to use your wisdom to help someone else. Some next steps may include:

• Help a family that is just learning about their child’s needs and how to work with the health care or education systems by being a parent-to-parent support.
• Ask a disability agency or a parent support group how you can get involved.
• When you feel ready, look for ways you can help change systems. You might think about volunteering on an advisory board, or participating in state consumer groups that make and improve policies that help others.

When you advocate for your own child’s needs, you may end up changing a whole system to better meet other children’s and families’ special needs.

Getting involved in advocacy at a systems level takes time and energy. Many parents with a short supply of both wonder, “Is it worth it?” After all, what do you, as a parent, have to give? How will you teach professionals and policy-makers? Will they listen?

The fact is, you have much to offer. Even if professionals and policy-makers have knowledge in their fields, they need and welcome your input. They benefit from your outlook, knowledge, and personal experience of how programs, services, and resources work (or don’t work). You have the power to make positive changes in your child’s life, and in many other lives.

Because there are always many sides to each issue, there are times when there may be a conflict that seems too hard to resolve. Here, we offer some strategies to work towards an agreement:

• Share your assumptions and perspectives.
• Listen with both your head and your heart.
• Try to think and see from the other’s point of view.
• What might help that person feel more at ease with the issue?
• Find a middle ground to work together.
• Try restating the problem.
• Think of how barriers, negative experiences, and concerns could be known and addressed.
• Involve others to find a solution. Who might offer a useful or needed outlook?

State and Federal funding is a big part of determining services for children, youth, and adults with special health care needs. Congress and State Legislatures make hard decisions that directly impact lives. Advocating at the systems level of the government can seem intimidating, but remember that you can make a difference.

Advocacy is part of your life. Many of us need to advocate every day. Your own experience with speaking up for your child in school, for their healthcare and what they need, makes you a very strong advocate for the needs of other children with and their families.

There are four basic steps to being involved in the legislative advocacy process. They are:

Step 1: Choosing and Learning about Your Issues

Step 2: Identify the Decision Makers

Step 3: Understand the Legislative Process

Step 4: Communicating Your Views

Whether you’re an advocate for your family or for larger systems, your voice counts. Sharing your outlook and speaking up about what is working or not working is meaningful!

"Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it's the only thing that ever has." - Margaret Mead

To learn about the US Congress legislative process go to The Legislative Process.