By Steve Schoen, Executive Director,
Deaf-Blind Multihandicapped Association of Texas (DBMAT), Austin, TX
Abstract: The author shares tips for working with different systems to advocate for change.
Keywords: Family Wisdom, blind, visually impaired, deafblind, self determination, advocacy
I was having consumer difficulties today (having to deal with a New York parking ticket and a rental car) and it made me think of parents dealing with “the system.” Quite a few parallels (having nothing to do with parallel parking) occurred to me. So here are Steve’s rules for self advocacy (which I learned from some of you when I was the bureaucrat.)
1) Get the facts.
In my traffic case I needed to call the Village of Mineola and figure out why my ticket price had grown to a scary amount. In the case of a parent, it pays to look at the system you are dealing with (school, private provider of services, state program), and educate yourself about how the system works.
2) Review the legitimacy of your claim.
In the case of my rapidly growing traffic ticket, I asked my wife Marian what she thought, and she said, “Just pay it…,” which I ignored. In the case of a parent, it pays to look at what it is you are wanting, and be sure that the request is reasonable. It helps to ask a friend (who is knowledgeable about disability and special needs) to review the facts with you. Many times, parents know their children better than the professionals. They also may know about more effective training or treatment possibilities through their experience as parents and attending training from others.
3) Don’t accept the first “no.”
In talking to the rental car person, I found her saying the same thing over and over despite my incredibly erudite explanation of where her company was at fault. When you are talking to a professional about your claim, you may hear this type of repetitive response amounting to “No,” or “The system doesn’t work that way,” or “We know what your child needs,” or “No one has ever asked for this before.” (I could go on--- but I bet most parents can create a far better list than I could.)
4) Take it to the next level.
There is almost always a next level. After hearing the rental car person tell me the same company policy 3 times, I said, “I understand what you are saying, and I understand that at your level in the organization, this is all you are authorized to say… I want to talk to a supervisor.” Each time she repeated her “company policy” statement, I repeated my “supervisor” statement. After only 3 more replays of this scenario, I actually got transferred. When parents are dealing with systems, this rule is very important. The person at the first level is not the final word. And frequently, there is more than one level where you can take your request.
5) Stay calm.
My family will attest that when my volume and pitch of speech go up, I am out of control when talking to “the man.” This time I focused on my breath, kept my eye on the goal I wanted, and stayed very peaceful. It helps to think of the entire process as a game, and that one rule of the game is to stay calm. I know…. I know… that the stakes parents are dealing with are significantly higher than a traffic ticket fee. But that’s all the more reason to stay calm.
6) Try to identify with the person you are talking to and give them some credit.
Whoops--- To be perfectly honest, I forgot to do this with my traffic ticket. But you can do better than I. Easy things to identify with are: “I know you have a hard job…. what with all of those pesky rules and such,” or “You have done a great job explaining this to me.”
7) Don’t gloat when you get your way.
In my case I only had to pay 58% of the original fine (but who’s counting?). I thanked the supervisor for being reasonable and told him I thought this was a fair settlement. It would NOT be good to say the things that are just itching to come off your tongue like: “Wouldn’t we have saved a lot of time if you were just reasonable from the start,” or “You people are really difficult.” Remember, you may be back soon enough on another issue.
All of these thoughts will be important as DBMAT tries to advance its legislative agenda. I hope we will be able to report on our success as the year progresses. And my last thought for now is to remind everyone to visit our newly revised website at <http://www.dbmat-tx.org>. You will find many new features including: online application for membership, contact information for our regional coordinators, online application for intervener scholarships, and fancy opportunity to contribute to DBMAT online and receive a premium of DBMAT cap and cup. See you online!