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Advocacy for Parents of Children with Disabilities

Woman embracing a child with child's hand on woman's cheek

To say that parents of children with disabilities have learned to multi-task is an understatement. Providing for the many personal and care needs of your child on a daily basis requires you do this. There may be a way of caring for your child that you have not participated in up to this time. By advocating for your child and other children with similar disabilities, you are caring for your loved one as well.

This article highlights several tips and ideas for being an effective advocate with elected local, state or national representatives. I did this recently when I had the opportunity to be in Washington, D.C. It was my first try in personally contacting my senators and representative to advocate for an issue in which I passionately believe. I discovered it was invigorating to be in a place where decisions are made that affect hundreds to millions of people.

A major part of being an advocate involves talking with officials and staff of agencies and organizations, as well as government representatives, who really can make a difference in the lives of your loved ones. You want to be prepared for this task in order for your efforts to bring positive results for those persons whose cause you support.

Tips for Effective Advocates

Before preparing this article, I contacted several legislators and advocates for tips they suggest. So here, from the “horse’s mouth,” are ideas and tips that will help you be the most effective advocate when you contact an elected official.

1. Make your contact personal.

Your contact will be remembered long after your call or visit if you explain how a legislative proposal will impact your family. Your representative likely will not have first hand knowledge of what your family is going through. Whenever possible make your case more personal and less abstract. Remember that your knowledge, interest and passion will be remembered long after your visit.

2. Be prepared.

State the issue in a clear and concise manner. Know the bill number that you are advocating for or against, and where the bill is in the process. Every office suggested that you know who is supportive of your bill and who is not. Have the talking points ready for who might be opposed to your side of the issue. Do your research and be truthful.

3. Be passionate, not demanding.

There is an old saying, “You get more with honey, than vinegar.” Advocates who present an impassioned plea will be heard. But those who are strident may turn off the listener. Always be polite to office staff. That may be the difference between personal time with the legislator or not. Do not be offended if you are speaking with a staffer instead of the legislator. The staffer is likely to be more versed on your matter than the legislator and the staffer likely will be the person who prepares a synopsis of the issue and legislation for your representative. Get the staffer is on your side. That is a good thing!

4. Follow up.

By sending a handwritten note or letter, your correspondence will stand out. Legislators receive hundreds of emails a day and this may be appropriate if a vote on your legislation is coming right up. But a personal letter is a wonderful way of sharing your story and educating an official. Just remember what your mother taught you – “please and thank you” go a long way! Your follow up letter, phone call, or email will show the legislator that you are truly engaged with your issue. Thank them for their time and effort in visiting with you and offer to be a resource if there are further questions that need answers. Also, if your advocacy is successful and legislation is enacted supporting your position, again thank the legislator and perhaps invite him or her to your organization or recognize their efforts in another fashion. This can help to establish a long and beneficial relationship with your elected officials.

Sometimes caring for family involves more than the daily activities of providing food and shelter. Sometimes we have to go outside of our comfort zones to do the right thing for our family and others. When you are passionate about helping your loved one and others, these tips can help you expand your reach outside your home or community. Maybe you could be the one to make a real difference statewide or nationally, for your loved one and others by your efforts at advocacy.


About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney [1].

 Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org [2].” The article may not be reproduced online. Instead, references to it should link to it on the SNA website.