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Advocacy/Finding Your Voice

Advocating for Your Child

Advocacy means to speak in support of something or someone. An advocate is someone who pleads the cause of another person, someone who stands up for that person’s needs. As a parent or loved one of a child with special healthcare needs, you learn about advocacy very quickly. You may not know what this truly means, or you may be a little intimidated by the word itself—isn’t that a legal word? To advocate means to speak up for someone, so yes, there are legal advocates, but in the life of a person with special healthcare needs, advocacy is a needed part of everyday life.

Individual Advocacy

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:

In the world of special health care needs and disability, advocacy means speaking out about an issue that concerns your child. This can mean talking to your child’s teachers about her education, your child’s doctors about her health care needs, or law-makers about services and supports that would help your child, family, and community. Here are some tips to help advocate for specific needs:
  • Have a good plan of what you want and why you want it.
  • Go over what you will say, maybe with a friend.
  • Speak clearly.
  • Keep eye contact.
  • Take your time when talking, and ask for time to think if you need it.
  • If needed, repeat what you hear to be sure you really understand what is being said.
  • Be respectful.
  • Be careful of your body language (do you look or act angry, hasty, or upset?).
  • Be open and ready to work together to find middle ground.
  • Following up is vital.
  • Clearly explain the value of resolving the issue.

Advocating for the Community

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.

What Do I Have to Offer?

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.

What if We Just Can't Agree?

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?

Advocating for Legislative Change

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

What issues of concern do you want to work on? There are too many areas for you to try to advocate for them all at once. Focus on a few priority topics, like the education system, health care, housing or disability services and learn more about the challenges and what solutions there may be. Call or email your local representatives.
Once you find your advocacy issue, you need to TELL YOUR OWN STORY to policymakers. It’s very likely they are not very familiar with your needs. While you do not need to know every point, you must be able to answer the question “why does this matter?” Learn as much as you can about your issue; find resources such as advocacy or disability groups, legislative groups, and service providers.
Step 2: Identify the Decision Makers

Call your local county clerk or go to Vote Smart (votesmart.org) to find the names of the legislators and law makers that represent you.
Step 3: Understand the Legislative Process

Advocacy starts when YOU see a need to fix a program, start a new program, or change a state statute. Start by talking to advocacy groups and getting others involved. Then talk to state office directors and staff to get more facts about the need or issue. Finally, take your issue(s) to legislators. The first call should be to the representative in your district. They want to hear from and know their constituents. Even if they are not on the committee that will make rulings about your issue, they can speak with their colleagues that will vote on the issue.
To know how to influence legislation, you must first learn how the legislative process works. The State Legislature is responsible for making and changing state laws, as well as setting funding levels for the state budget. There are two processes that take place. The Appropriation process decides the state budget and sets the funding levels for state agencies and programs. The other is the Bill process that forms or changes state statute and starts new programs. If your issue is in the Appropriations process, you will want to find the Legislative Appropriations Committee that will be addressing your issue. Reach out to the members of the Committee to teach about why the issue matters and what it means to your family. If your issue is going through the Bill process, find out who the sponsor of the bill is and let them know how it will impact your family. A bill will need to be heard by the House and Senate committees and voted on seven times favorably to become law.
Legislative information can be found on State Legislative websites, which have information and tools as well as links to live and archived committee meetings.
Step 4: Communicating Your Views

You can email, call, or visit legislators. You can also testify at a committee meeting. Meeting them in person can make a big impact. No matter what form you use to communicate your views or needs, follow these tips:
  • Always identify yourself by name and address. One of the most important things you can tell them about yourself is, “I am a voter in your district.”
  • Be brief, well-informed, and polite.
  • Point out the issue, budget item, or bill you want to talk about. Don’t expect they know about it—they have much to deal with.
  • State your purpose for calling, state your point of view and give one or more reasons why you feel that way.
  • Tell your own story.
  • Always thank them for their time.
Calling

Legislators pay attention when citizens take the time to call and share their views, especially when it comes from constituents in their home districts. Call just before the committee votes, when they are on the floor, or late in the session.
Emailing

Email is a good way to connect. You may want to send as much information as you can early on and follow up through the session since legislators get a lot of email and calls during this time.
Visiting

Call ahead to make an appointment and be on time. Respect their schedules by being brief and to the point. Plan on taking no more than 10 minutes as well as giving them a one-page outline or short fact sheet to read. The handout is a great way to remind them about your visit and concerns. Make sure to include your name, phone number and email on the handout so they have an easy way to reach you with any questions or for more data.
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.

Resources

Information & Support

For Parents and Patients

Advocacy ATLAS
Online Advocacy ATLAS is a toolkit created by Genetic Alliance, Parent to Parent USA, and Family Voices that provides individuals with special healthcare needs and their families with tools and strategies to advocate for whatever they may need. Resources for: Access to Healthcare, Accessibility, Communicating About Your Health, Advocacy Leadership, Insurance and Financial Assistance, Transition to Adulthood, etc.

Golden Rules of Effective Advocacy
From: A Guide for the Powerless — and Those Who Don’t Know Their Own Power; Samuel Halperin, Institute for Educational Leadership, Washington, D.C., 1981.

Services for Patients & Families in Montana (MT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: June 2008; last update/revision: July 2019
Current Authors and Reviewers:
Reviewer: Tina Persels
Authoring history
2012: revision: Alfred N. Romeo, RN, PhDR
2012: first version: Gina Pola-MoneyR
AAuthor; CAContributing Author; SASenior Author; RReviewer