Why Parents MUST NOT Stop!

Parents of Children with Special Needs

I am constantly amazed at the bravery of some parents who are activists for their children in schools in the US. There are so many exhausted parents looking desperately for help in a place that is mandated by US law to help, public schools.

“I Am Adam Lanza’s Mother” Blogger Reveals Regrets, Hopes For Mental Health Care

On May 30, 2014, WBUR -Boston interviewed a mother who wrote a post a year ago called “I Am Adam Lanza’s Mother” last year.  Her post went viral and she and her family were in the glare of the media’s spotlights.  Here is her interview:

http://cache.wbur.org/audio/player/news/2014/05/30/i-am-adam-lanzas-mother-blogger-mental-health

mental health special needsLook at the Comments

I read the interview and then I looked at the comments. WOW! The comments are powerful! Here are a few and I will add them as this post evolves.

Ellen Chambers • 2 hours ago
There is another culprit in our society’s long-standing failure to address the needs of individuals with mental health disabilities (and other disabilities that can sprout mental health implications when not properly supported): our public schools.

Like it or not, schoolchildren with special needs have a legal right to educational services that will prepare them for further education beyond high school, employment, and independent living. Like it or not, these services must be delivered in a manner that allows them to make progress at a rate commensurate with their innate cognitive ability. Like it or not that means school districts must address a student’s mental health issues that impact on that mandate. That’s the law. If you don’t like it, it’s a free country, you can lobby Congress to change it. Until then, that’s the law.

The reality, though, is very different, and therein lies the problem (actually, therein lies the ticking time bomb.) Public school districts in Massachusetts (and nationally) violate students’ special education rights at an alarming rate. According to the Massachusetts Department of Elementary and Secondary Education (MDESE) between July 1, 2011 and June 30, 2012 there were 715 such violations recorded in the Commonwealth. Those are the violations that were discovered… the actual number is hundreds of times higher.

We’re not talking about pesky little paperwork violations. These are substantive violations that have an immediate and negative effect on the lives of students with special needs and their families. Some of these students present with primary mental health disabilities, others develop secondary psychiatric issues due to years of preventable academic struggle and failure and the the emotional battering that goes along with that. Tens of thousand of Massachusetts students with disabilities are failing at rates far out of proportion to their innate abilities. Anyone wanting the numbers to prove this can contact me privately at emchambers@charter.net

I am working a Massachusetts case right now involving a 15 year old boy with primary diagnoses of autism and obsessive compulsive disorder. This young man has great potential, he is not cognitively impaired. However, his autism makes it very difficult for him to control his behavior. Over the past year his behaviors have escalated alarmingly, despite the best efforts of his family to work with their local school district to address them. He has had two psychiatric hospitalizations in this year alone because he presents “a risk of harm to others” according to the hospital. His psychiatrist, who has treated him for over two years, states he “has had a significant increase in sexualized and assaultive behaviors, self-injurious behaviors, and verbal threats towards others.” His pediatrician who has treated him for 13 years has written to the school stating his “autistic symptoms present significant and imminent danger of serious bodily harm to both himself and those around him.” The school district has received similar letters from many others involved in his care, and all have recommended he be placed immediately in a residential school equipped to work with him.

This wonderful young man, through no fault of his own, is a ticking time bomb. Why? Because his school district has turned a deaf ear to the warnings of multiple clinicians, and has ignored it’s legal obligation to properly educate him. Meanwhile he, his family, and his community are, today, in “significant and imminent danger of serious harm.” The school committee, school superintendent, school special education director, and the local police have all been notified. Despite all of this, his family’s only recourse is to hire a lawyer at many thousands of dollars (which they don’t have) to take their school district to a hearing to force them to comply with the law.

I spoke with the school district last week and pointed out that this case is not at all unlike those of John Odgren, Adam Lanza, Phillip Chism, and Elliott Rodger. Still, they refused to place him in a residential school. They gave no cogent reason for their position.

A tragedy could very well be in the making here, everyone knows about it, and NO ONE is doing anything to prevent it. And, God forbid, if something tragic does happen, I can assure you the school district will not be held to account. We have a broken, dangerous, mental health system. That’s well known. We also have a broken, dangerous, public education system that has flown under the radar for decades, inflicting damage every day.

Ellen M. Chambers, MBA
Special Education Activist
Massachusetts
(978) 433-5983
emchambers@charter.net

MarionKing • an hour ago
Ellen, Thank you for such a clear and compelling discussion of this issue. I have experienced the failure of my public school to address the needs of my children, one of whom has mental health needs secondary to his autism diagnosis, and the other of whom has a primary diagnosis of mental illness and a rare, complicated physical disorder.

I also heard Liza Long speak yesterday in Marlboro about stigma, and speaking out, and about how her state’s Child and Family protection services provided her with a horrific ultimatum.

My advocacy on behalf of my children and as a the Vice President of the Board of Directors of SPEDWatch have been used against me by my school district and the legal system, as if advocating for all children, my own included, was somehow indicative of some parenting flaw.

The world has gone mad.

The sooner that parents, educators, first responders, elected officials, social workers, medical and mental health providers, aunt and uncles, grandparents and siblings, friends and neighbors, in short, all of us, shout from the rooftops that schools and mental health systems must collaborate and actually MEET the needs of our children, the sooner we will have an end to the stories of Adam Lanza, Elliot Rodgers, Ellen’s young autistic client, my children, and many more.

Marion King, Foxboro MA
http://www.spedwatch.org

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