December 30th, 2013
This post isn’t intended to toot my own horn. It happened awhile ago but will hopefully address an issue I’ve run into numerous times in my travels. Meeting many along the way, there were some who felt afraid to converse about politics and educational freedoms for reasons they didn’t confide. So, here’s testimony to the power of the written word to change the minds of law-makers about the wisdom of their work product.
In the second half of the 1990s, I found myself working for a large non-profit company serving developmentally disabled individuals from ‘cradle to grave’. I was part of their administrative and therapeutic staff within their special needs, preschool division. Disabilities ranged along the moderate to severe spectrum and the program had a well-deserved reputation for excellence. Then came the day when I attended an administration meeting and was told the New York State Department of Education had circulated a new decision. The law stated we were no longer allowed to write our clinical evaluation reports with that all-important section that summarized our findings. That portion of every report informed parents and other professionals (including the funding courts) of our conclusions as to how a child functioned and what services were warranted to address identified problems. The new rules ordered us to list our raw test findings, which would then be interpreted by members of the school district as the sole determinants of what parents would hear. Therapists were no longer even allowed to tell parents verbally about test results. We were effectively bound and gagged as professionals and educators. I wanted to quit on the spot.
The issue was supposedly about saving money, as too many youngsters were qualifying for help and knowledgeable parents had the right to pursue legal avenues of help if they knew their rights. The increasingly sophisticated clinical skills of therapists and test formulators allowed us to better diagnose children who weren’t performing to potential due to subtle disorders. We knew if we didn’t recommend help before they fell too far behind their peer group, there would be even fewer children rendered capable of reaching higher educational and vocational opportunities. The rules for remedial services funded children who were more than two years behind their peers but our counseling also enabled parents to find private avenues for help if they didn’t qualify for public services. If they didn’t hear it from the therapists, kids who were having more mild problems were likely to suffer for a few more years until the disabilities had become severe. More importantly, better normed tests allowed us to find areas of skills that fell significantly behind other skills for a given child. It was possible they would qualify for help based upon a two year deficit in only one area of learning, such as reading. Averaging scores never adequately told the story of a person’s learning potential. Testing also effectively determined when language differences (home language background) were the reason for deficits and these were not funded for special education. Parents were directed instead to ESL (English as a Second Language) services. We didn’t confuse these issues.
I had no problem with school boards informing parents that there was insufficient funding for some children to have remedial help. I did have a problem with a parent being wrongly told their child simply didn’t require it by school board ‘standards’ or through averaging scores. A parent has to be the ultimate source of advocacy for a child. If they don’t know what to ask about the test results or when to seek private sources of aid, their child would be forever harmed.
Walking away from that meeting, I began an intensive review of the implications. The therapists working under me felt their colleagues around town had agreed it would be okay to break the law and at least verbally counsel parents but I refused that option. The school would be at risk for such a breach and I felt the law was immoral. Why should we feel at alll ‘guilty’ for breaking a law that was a violation of higher laws themselves? This affected all professionals severely so I attacked the problem in two ways. First, how might we deal with this rule as it was currently written? The answer was to tell the exact truth.
After clearing this idea with my worried bosses, I instituted a format for ending all of our reports in the clinical services department. It went something like this:
“Public Law #_____ states that this clinician is prohibited from informing the parent about their child’s overall functioning and eligibility/need for services. We recommend the parent ask permission from the schoolboard to obtain this counseling directly from the clinician.
Barbara Rubin, M.A.
We all began writing this and faxed samples to other schools in the region. It became a popular format for reports and a source of embarrassment to the powers which wrote this legislation. Parents rightly felt deprived of medical and educational data about their children.
The second avenue of attack was instituted through notifying professional associations that they might have to begin decertifying their members for complying with this law. The codes of ethics were all posted on-line for our various professions. The American Speech-Language and Hearing Association alone had thirteen articles of their code of ethics that were breached by these rules. They explained to me that it was only the NYS Association that had reuctantly agreed to them when presented with the draft rulings. I requested they call the state association and Department of Education to inform them that the national licenses most therapists had (in addition to state licensure) might be revoked. There was a specific obligation for every therapist to fully inform parents about the findings of all testing along with all remedial options. They agreed as did many other professional bodies that it should not be a crime for any of us to perform our jobs.
Within two months or so, we were informed the law had been revoked and we were free to resume adhering to our code of ethics as professionals. The written word, along with the strength of ethical practices long held by our national associations, won that battle. I am most grateful to all the clinicians who refused to accept the possibility of punitive consequences for doing their jobs and confronting the problem directly. The parental voices that also rose in protest must have helped greatly although I wasn’t privy to that part of the battle.
Silence is imposed upon people in every walk of life, sometimes without individuals even being aware of it. If we hadn’t written about that law in our reports, parents would never have known they hadn’t been given all the information due them. When I think of the many journalists in the world today who are sitting in jail cells, I am forced to wonder just what it is that I’ve not learned because they were gagged.