Advocacy -- Taking Charge:
How To Do It
A Primer for Parents
by Helen Rader and Jenifer Simpson
Here are some tips that will help you become your child's best advocate!
Remember:
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 with a disability longer and more intimately than
anyone else. Only you have the long perspective. The big picture. Trust that
knowledge.
Believing in your intuition is being able to trust
yourself and those 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 about disability law but, it is very important
to learn what your child's rights are before you can fight for them. There
are many sources of education and support in your state. There are advocates
in your state - at the Protection and
Advocacy agency and at parent training centers. They are your allies and
will prepare and support you. The more skills and information you learn the
better you can advocate.
Other Tips:
1. Documentation -- Keep a notebook
You must write down facts and keep 'a paper trail.' There are two
different kinds of facts. One is objective and the other is subjective.
Objective facts are 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."
Facts are listing the questions you ask and writing down the given
answers. Put quotes around answers. Ask the person to repeat themselves or
say "I heard you say that you do not think Jesse can have
accommodations in the classroom because that isn't fair to the other students. Is that what you said?" Write
it down. It is okay to say that you are writing the response into a
notebook.
If you get an answer you don't agree with, don't understand or you know
is wrong, say so. Always ask for the statement to be sent to you in writing.
Say, "Please send me a copy of that in writing." You make this
request when you are talking with educators, insurance companies, Medicaid,
a community agency, and others.
Keep a file folder or box or drawer for the written replies and paperwork
you will receive. If you have time, organize it either chronologically or by
subject.
Subjective facts are your thoughts about either a person or an event that
occurred. Did the person act friendly? Ignorant? Were they willing to talk
with you? Were they evasive? Just jot down a couple of words or sentences to
remind you what kind of conversation you had.
Remember: keep your notes on facts and opinions in one place,
either on a computer or in an organized notebook. This is a quick and easy
way to make sure that your notes are not here and there, but easy to find.
Over the years, you'll see why having your notes together is a time-saver.
Date your notes and thoughts.
2. Phone calls
Write the date, time, name and title, and telephone number of the
person you are talking with in the notebook.
Write ahead of time the questions you will ask leaving space for the
answers you get. Realize that 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 the person who has the
authority to state policy so persist in trying to reach a person of
authority. Ask "Who is the person responsible for
putting together the IEP team?" "May I speak with the person who determines
the transportation schedule for school buses?" "Who is the
expert on assistive technology funding in our school district?"
If you don't know what an IEP is or if you don't know if your child is
eligible for particular services, that is the call you need to make tomorrow.
When you make a call, leave pleading and begging behind. Simply say,
"Hello. This is Jane Doe calling for Mr. Sampson." Period. You
can say, "My son has a learning disability called NLD. What are
the steps I must take to request an in-service workshop on this disorder
for teachers in his school?" or "How and where do I apply for
special education services for
my learning 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 clinical 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, save that for your friends, family and support groups.
Deal with administrators and service delivery people in a businesslike
manner.
If the person is not available, simply say, "Please ask (whoever) to return my call. My number is --." 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 the teacher who called my
daughter 'retarded'," or "I'm calling about my son's application
into 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.
Call back if you don't succeed in reaching the right person the first
time. Ask, "Who should I be talking to, then?" If they seem
unhelpful or 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 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.
3. Letter Writing
After the phone call, sit down and write a short letter which states
that you just talked and this is what transpired on the phone. Keep it as
objective as possible by stating the facts. At the top of the letter
reference the subject, e.g., "Re: Occupational Therapist Still Not
Hired," or "Re: Second Request For Payment of Speech &
Language Therapy
Sessions."
To give your letter real muscle though, there's a simple technique
called "cc" or "carbon copy." This is at the very end
of the letter and it's to let the recipient know that you mean business.
You "cc" your letter to their boss, or the agency head that
administers the program. Using two or more cc's can be useful: you can
"cc" an advocacy organization such as a parent training center, and your state legislators
or U.S. Senator or Representative.
Don't worry about whether or not your Congressperson cares or not. They
do. This is one "cc" that will do more good in the long run than
any other. The people who amend, authorize the funding or change the laws
of the land need information from you. If there is no law or regulation,
they can make new ones. Your voice is very important. They need you to
keep them informed.
4. Meetings
If a meeting is scheduled at a time you can't attend, ask for it to be
postponed. Propose an alternative time. If you know you are going to be
late, call and let them 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. If you are going to change the IEP, have your suggestions
in writing, preferably typed, with extra copies.
Take a moment at the start of the meeting to write down the name of
everyone in the room and their title. Don't hesitate to ask "Just a
minute, how do you spell your name?"
Bring a tape recorder if you want to.
Bring a friend or advocate for support. Introduce the person.
If you don't understand something that is happening in the meeting, or
emotions flare, ask for a break. Say "I think I need a break. I'm
going into the hall for ten minutes." Use the time to collect your
thoughts.
Avoid being in a position where you swear or will regret later words
you used.
Take notes during the meeting if you can.
If the meeting is "going nowhere" say so. Propose another
meeting.
If substantial gain is made during the meeting, write a follow up
letter clarifying what you think was decided or happened. "CC"
all the attendees or others who are interested in the outcome.
5. Legal Representation Or Alternate
Dispute Resolution
You can hire a lawyer later if you need to or if you opt to utilize a
formal Alternate Dispute Resolution process if it's available or offered.
Your state has a Protection & Advocacy agency and your county has a
legal services office.
With your documentation and knowledge of the facts and a feeling about
what is going on you will save time and attorney's fees, and personal
aggravation, by having your records straight. You will also know a great
deal 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, for instance, also understands how Special Education law
works or that an appointed mediator, for instance, knows what a para-professional
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 them. 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."
6. Use of Anecdotes
Anecdotes are stories to make a point. They are used to give examples.
This is a particularly useful tool if you meet face-to-face with an
elected representative or 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
unresponsiveness or insensitivity of the school system to your child, you
could talk about your child's IEP goals and explain how they are not being
implemented. OR, you could say:
A story in short declarative sentences is easier to understand than
going into a lot of detail and opinion. Find a powerful story to make your
point, and use it.
Advocacy is its own reward and there will be 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 again!
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 it is
right for their child with a disability. One parent may leaflet all the
teachers' mailboxes to argue for inclusion of their NLD child
into a regular education classroom and win; another parent may launch a
full-scale litigation effort to win. Different circumstances require
different actions and strategy on your part.
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
the IEP you've been struggling for is finally implemented, or your
insurance company agrees to pay for a specialized summer camp. Share the gladness of the moment
when your child has a great day at school, or your young adult daughter 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 or 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 exactly 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.
~~~~~~~~~~
© 1992, United Cerebral Palsy.
Adapted by NLD on the Web!, with the authors'
permission, from an article written by Helen Rader and Jenifer Simpson, for
United Cerebral Palsy.
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