October 25, 2008

Finding an Advocate

There has always been confusion in special education about the term “advocate”. But nobody really understands it because everybody uses a different definition. I think it’s fair to say that I’ve trained more people to function as an advocate than any other single person in the history of special education. I write this now and continue to be uncomfortable with the word. When I started to help parents in 1977, that term was never used. My name was put on a list by the State of New Jersey under the category of “Free or low cost representation” without my knowledge and parents began to call me for help. When I started litigating cases in 1978, the term still wasn’t used. It was only when special education due process hearings were taken away from hearing officers and placed within the Office of Administrative Law (OAL) in 1982 that I first heard the term “advocate”. A woman at OAL was given the title of “Advocate Liaison” in order to coordinate “all of the advocates” who would be doing special education cases. She was shocked to learn that there was only one person doing those cases.

Over the last 30 years I’ve seen every form and shade of people who call themselves advocates. They range from a lawyer specializing in dyslexia who refuses to call himself a lawyer, preferring the word “advocate”, to the well-intended mother of a disabled child who wants to help other parents. Advocate is an interesting word. As a noun it names the category of work a person does. As a verb it is an action that speaks on behalf of someone else. There is no agreed upon body of knowledge or skills essential to being an advocate. Advocates do not carry any kind of liability insurance. I know, because over the years I tried to get such a policy. There is no ethical code of conduct. Attorneys point to these difficulties to support arguments against advocates working as nonlawyers. Yet, lawyer skullduggery makes such problems seem minor by comparison. COPAA has a list of attorneys and advocates in each state on their website. In looking at those listed from New Jersey, I know them all and would never refer anyone to them. Because the area of special education is so complex, it is vital for parents to realize that there is probably nobody out there with the skills they actually need. The federally funded protection and advocacy organizations (P&As) and parent training and information centers (PICs) are useless for most problems. Federal funding does not permit vigorous representation of individual cases. And special education is almost never touched because of the time each case consumes.

The most important element of an advocate is their ability to be a good teacher. They empower parents who come to them so that they can ultimately do much of the work themselves. An even temperament is crucial. Self-discipline, the ability to be objective and meeting deadlines is mandatory. They must be good listeners and well organized. They must be nonjudgmental and willing to handle hugely diverse families and children. They must have expertise beyond one disability. They cannot bring their own agendas or politics to the case. Each case is new and must be treated as such. They must be able to integrate mastery of special education law with public school education practices. Both must meld with clinical sciences in such a way that the full picture of the child and the child’s needs emerge. They must be articulate but not bossy or overbearing. They must be able to write well. These things are the bare minimum of what must be in place to be an advocate.

How much can advocates charge? Whatever the market will bare. Of course the issue is that the people who need advocates the most never get them. Time and time again I’ve worked with and trained people who started out one way but ended up another. They get hooked on power. Or they begin to charge prices only the well to do can pay. They get lazy and take the easy way out. Ultimately, advocacy becomes a job when it needs to be a mission. Many times a week I get calls looking for an advocate or a lawyer. There is no place to send them. As we look at 2009 peeking around the Christmas corner, I think this is going to be a little project for the New Year.

Nothing rhymes with advocate. However, it is great fun as a root word.

BADVOCATE. An advocate who misrepresents who/what he/she is and can do for you. They give bad advice that gets the parent and child into trouble. They become impossible to work with. They don’t give options for decision-making. They don’t return phone calls or emails. They don’t show up for a scheduled meeting.

DADVOCATE. The advocate treats you like one of the family. He/she is too familiar, treating you like a friend instead of a client, letting their personal feelings cloud decision-making. Boundaries are essential between parent and advocate.

FADVOCATE. There are a lot of trendy things in special education. Right now it is autism and anything associated with the PDD spectrum. People are making fortunes from this misery who should never work with parents. It can be a new assistive technology or a particular passion for a reading program, such as Orton Gillingham. A Fadvocate may not be a Badvocate, but close monitoring is important to be sure they are doing the parent’s case and not furthering their own interests.

HADVOCATE. They say, “I did a similar case a long time ago.” “I had that same problem with my kid.” “I’ve had a lot of cases in that district.” “I had that judge before.” An advocate must stay current and think current. Experience is essential and not to be minimized. However, for each parent the case is new. It is important not to carry over baggage from the past unless it impacts the ability to help the parent.

MADVOCATE. They are always angry about something. They loose their temper easily, wear a scowl like a badge of honor, are rude, and improperly accuse school personnel of insult to themselves or the parent.

PADVOCATE. They exaggerate everything they do and their experience. They pad the time they spend on a case and are often unprepared for meetings, mediations, etc. They are as close to a Badvocate as you can get.

RADVOCATE. They are radicals about certain causes or beliefs. They take cases in order to stir the pot on their particular issue, often sacrificing the precision of the work for the drama of the event. Some can be skilled in special education. But most Radvocates become emotional, often insult other professionals, and frequently forget the child in question does not belong to them.

SADVOCATE. They draw their eyebrows into a bow and sigh “Oooh!”, as in poor you, too bad, so sad. They shake their head back and forth in disbelief when they take the parent history. They get a case to a certain point, then throw up their hands and say they are all done and can’t help anymore. They seem to feel the parent’s pain in a kind of Spock brain link, saying “tsk, tsk” several times to punctuate their compassion and understanding.

An infinite variety of parents require a wide variety of advocates so that there is compatibility of personality, temperament and approach. Somebody may be better than nobody when a parent is afraid and desperate. But no matter who you eventually find, be careful. One of the things I still say during a first meeting is, “Don’t trust me. You don’t know me. Ask questions. Challenge what I say. Demand proof. Say ‘show me’ when I refer to research or the law.” We are entering a new era in our history and it is time to start special education over again. We know there are parents and children and a law that was never enforced. So the first item on the action agenda for the future is: What is an advocate? Who trains them? Where do parents find them? Who pays them? Look for more on this soon.