Primer for Parents Taking Charge: How to Become Your Child’s Best Advocate

Primer for Parents Taking Charge: How to Become Your Child’s Best Advocate

To become your child’s best advocate, you should keep in mind several points:

• The squeaky wheel gets greased.
• Information is power.
• Believe in your child.
• Believe and trust in your own insight and intuition.
• You are the change agent. You can do it.

Believing in your child is essential. No doctor, therapist, teacher or anyone knows your child better than you do. You have lived with your child and his or her disability longer and more intimately than anyone else has. You can see the big picture. Trust that knowledge.

Believing in your intuition is being able to trust yourself and the feelings you have. A hunch is usually a sign; follow your hunches.

Educating yourself is critical. You do not have to become a walking encyclopedia of disability law – but you must know what your child’s rights are before you can fight for them. There are many sources of education, support and advocacy available, including the National Limb Loss Information Center, the Amputee Coalition, protection and advocacy agencies, and parent training centers. They are your allies and will prepare and support you. The more skills and information you have, the better you can advocate.

The following tips on documenting your case, making phone calls, letter writing, attending meetings, legal representation or alternate dispute resolution, and the use of anecdotes may increase your ability to make an impact in your child’s life.

Documentation

Keep a notebook. Write down all relevant facts and establish “a paper trail.”

There are two different kinds of facts: objective and subjective. Objective facts include items like the name, telephone number, and title or position of the person you talk to. Don’t be afraid to ask. Say, “Just a minute, please. I need your name and title. I’m writing this down.” List the questions you ask and write down the answers with quotation marks around them. If you can’t write quickly enough, ask people to repeat themselves or say, “I heard you say that you do not think my daughter can be in your day-care center because she uses a wheelchair. Is that what you said?” Write it down. It is okay to say that you are writing the response in a notebook.

If you get an answer you don’t agree with, don’t understand, or that you know is wrong, say so. Always ask for the statement to be sent to you in writing, especially when you are talking with educators, insurance companies, Medicaid, community agencies, hospitals, landlords and restaurant owners.

Subjective facts are your thoughts about either a person or an event that occurred. Did the person act friendly? Ignorant? Was she willing to talk with you? Was she evasive? Just jot down a couple of words or sentences to remind you what kind of conversation you had.

Keep your notes and documents in one place, either on a computer disk or in an organized notebook, file folder, box or drawer. Make sure you date everything, and, if you have time, organize everything chronologically or by subject. This is a quick and easy way to make sure that your notes are easy to find when you need them.

Phone calls

Write the date, time, name, title and telephone number of the person you are talking with in your notebook. Write the questions you will ask ahead of time, leaving space for the answers you will get. A phone call can be forgotten – or denied.

Try to talk to the “power” person or the person who has the critical information you want. It may take a while to get to someone who has the authority to state policy – so be persistent. Call an agency and say, “May I speak with the policy expert on the Medicaid state plan?” or “Who is the expert on assistive-technology funding in our school district?” If you don’t know if your child is eligible for Medicaid, that is the call you need to make tomorrow.

When you make a call, don’t plead or beg. Simply say, “Hello. This is Jane Doe calling for Mr. Blank.” Period. You can say, “My son is an amputee. What are the steps I must take to make him eligible for the football team?” or “How and where do I apply for Social Security for my disabled daughter?” Be as direct as you can with your initial request. You do not need to explain your story or request in detail to everyone. You don’t have to give the medical terminology for your child’s disability. Just keep it simple and straightforward. And keep it to the facts. It is easy to begin to explain the ins and outs of what you’ve been through; however, you should save that for your friends, family and support group. Deal with administrators and service delivery people in a businesslike manner.

If the person is not available, simply say, “Please ask Ms. Claims Supervisor to return my call.” If a message is requested – and you may volunteer to leave one as well – make it strong and to the point: “I am calling about the bus picking the kids up an hour early each day” or “I’m calling about my son’s application for the summer recreation program.”

Ask when you can expect a return call. Write that down. If you don’t get a return call when you should have, call back.

You should also call back if you don’t succeed in reaching the right person the first time. Ask, “Whom should I be talking to, then?” If someone is not helpful or seems to be avoiding you, write it down. Keep a record of these referrals and if they are “passing the buck,” say so: “Look, I’m getting annoyed. Mr. Blank referred me to Ms. Specialist who referred me to you and now you’re referring me to Mr. Blank!”

If you are given approval for something over the phone, be sure to say thank you and ask for written confirmation to be sent to you the next day. File this with your other documentation.

Letter writing

After the phone call, sit down and write a short letter stating with whom you spoke and what was said. Send it to the person you spoke with or the organization he or she represents. Keep it as objective as possible by stating the facts. At the top of the letter, reference the subject (i.e., “Re: Inaccessible Restrooms in County Schools” or “Re: Nonpayment of Insurance Claim.”

To give your letter real muscle, you can use a simple technique called “cc” or “carbon copy.” These two letters go at the end of the letter and let recipients know that you mean business. For example, you might “cc” your letter to their boss or the agency head that administers the program (i.e., cc: Mr. Big Shot, CEO). This lets the person know that you sent a copy to someone else as well, usually someone with clout. Using two or more ccs can be especially useful. You might also want to “cc” an advocacy organization, your state legislators or U.S. senators and representatives.

Don’t worry about whether your legislators care or not. They do. This is one “cc” that will do more good in the long run than any other. The people who can change the laws of the land and authorize funding need information from you. If there is no law or regulation, they can make a new one. Your voice is very important. They need you to keep them informed.

Meetings

If a meeting is scheduled at a time you can’t attend, ask for a postponement and propose an alternative time. If you know you are going to be late, call and let the planners or other participants know.

Be sure you know the purpose of the meeting. This will establish what your role is and will help you focus on what your child needs to have happen. Be prepared. Have your suggestions in writing, preferably typed, with extra copies. Take a moment at the start of the meeting to write down the names and titles of the participants. Don’t hesitate to ask them how to spell their names. Bring a tape recorder if you want to. Bring a friend or advocate for support and introduce him or her. If you don’t understand something that is happening or emotions flare, ask for a break. Use the time to collect your thoughts. Avoid getting into a situation in which you will say things you will later regret. Take notes during the meeting if you can. If the meeting is “going nowhere,” say so. Propose another meeting. If substantial progress is made during the meeting, write a follow-up letter clarifying what you think was decided or happened. “CC” all the attendees and others who might be interested in the outcome.

Legal representation or alternate dispute resolution

You can hire a lawyer if you need to, or you might opt to use a formal alternate dispute resolution process if it’s available. Your state has a Protection & Advocacy agency and your county has a legal services office.

You will save time, attorney’s fees and personal aggravation by having your records straight. You will also know a great deal about the issues and be able to figure out if the mediator or lawyer is competent and knowledgeable about disability issues. You cannot assume that the domestic relations lawyer that you used for your divorce also understands how special-education law works or that an appointed mediator knows what an L-Code or DMERC (Durable Medical Equipment Regional Carrier) is.

Like all professionals you will be involved with, they are paid for their expertise and services and it is you who hires or consults them. Always get several referrals first and then “interview” the professional if possible to see if you can work with him or her. Again, trust your intuition and observations. You can say, “I’m shopping for an (attorney) (doctor) (dentist) who understands disability. I’ll get back to you when I decide what to do.”

Using anecdotes

Anecdotes are stories to make a point. They are used to give examples and are a particularly useful tool if you meet face-to-face with an elected representative, are asked to testify at a public hearing or public meeting, or are writing a Letter To The Editor of a newspaper. People remember anecdotes. For example, if you want to complain about the unresponsiveness or insensitivity of the school system to your child, you could simply say that your child has problems getting access to an accessible computer at school and that her needs are not being met. Or, you could paint a more memorable picture by saying:

“My daughter Holly is a quadrilateral amputee. She has no arms and only partial legs. The elementary school she attends has no computers that have been adapted to use without hands, although many devices are available for that purpose. During computer training classes, she is unable to use the computers with the other students. She just sits and watches as they work. After school, she comes home in tears. She says that she feels humiliated because she cannot participate with the other students. In addition, she is not learning.”

A story written in short, declarative sentences is easier to understand than one that goes into a lot of detail and opinion. Find a powerful story to make your point, and use it.

Pick your battles

Advocacy is its own reward and there will always be something to advocate for in this imperfect world. Accept that you cannot win all the time and that many goals may take months or years to reach. Give yourself a break now and then! Pick your battles. You’ll have ample opportunity over the years to fight many, so choose them and space out your energy. And be creative – there is no limit on the tactics parents can choose as they advocate for what is right for their child. One parent may send letters to all of the school board members in her community to argue for inclusion of her amputee child in an athletic program that typically applies to able-bodied children; another parent may launch a full-scale litigation effort. Different circumstances require different actions and strategies.

With each achievement, no matter how small, take a moment to congratulate yourself for a job well done. Have a party with your family or friends when you finally get Medicaid to pay for a special prosthetic device, when you secure SSI for your child, or when you get the “okay for payment” from your insurance company for something they previously rejected. Share the gladness of the moment when your child gets on the bus with his sister to go to the neighborhood school, or when your daughter who uses prostheses for both arms gets a job after a year of searching.

You’ll know you are an advocate when you feel like you have had to decide between being popular and being respected. In the long run, being respected will do more for your child than trying to keep everyone pleased. This might sound like we’re suggesting you have to fight for everything and be combative. We are not saying that. We are saying, however, that as you work to make sure your child’s legal and social rights are won – because, unfortunately, they are not automatically provided or extended to your child – you will feel and act differently. And it will be worth it!

It is your right, your responsibility and your duty to speak up and out! We thank you for your efforts! We all gain when your child gains.

Jenifer Simpson is currently the telecommunications accessibility specialist in the Disabilities Rights Office at the Federal Communications Commission in Washington, D.C. Previously, she was an employment advisor on the President’s Committee On Employment Of People With Disabilities, and she co-wrote this article when she worked for the national office of the United

Cerebral Palsy Association. Her 16-year-old son Joshua has severe communication and physical disabilities as a result of cerebral palsy. She can be reached via telephone at 202/483-1760 or via e-mail at Jsimpson@FCC.gov

Helen Rader is a housewife and a personal caregiver for her disabled husband, Bob Williams, former deputy assistant secretary for Disability, Aging and Long-Term Care Policy. Her son, who died in 1997 of complications from severe epilepsy, inspired her to write.

© July 1992 United Cerebral Palsy