Why Parents MUST NOT Stop!

mental health special needs

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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“There Is No Health Without Mental Health”

@DocGroucho“There is no health without mental health. I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term.”

“Suicide is the 10th leading cause of death. The third for some children. It’s a public health issue.” April Foreman, PhD

Dr. April Foreman is not your average psychologist. She is an innovator and an extremely determined woman, especially when it comes to Veterans and social media. “I love serving Veterans in my role as Suicide Prevention Coordinator at my VA. Love innovating ways to give good care.”

That’s why she and her VA team went the extra mile to get her to a WiFi enabled Starbucks for a twitter chat. “I had to drive back from New Orleans and my government car wouldn’t start. My VA team knew about this chat and …helped me call the tow and get a new car in record time, so I could get to a place with WiFi! Many of the people I work with are Veterans…And they know how to work as a team!”

Foreman describes her job search which led to her employment this way, “At the VA, everyone I spoke with understood the value of connecting providers, patients and their health care system using personal technology and “’new media.’  In mental health care we understand it is the relationship that heals, and I knew that I needed to work in a place that understood the importance of life-long patient relationships. A place that would do anything, even brave the Web 2.0 frontier in health care, to do this.”

In the same post, Dr. Foreman states that she knew she wanted to be a psychologist since fourth grade. “Easing pain – even just a little bit – one person at a time has always been my personal mission,” she says.

Dr. Foreman uses social media to educate and inform. This is because social media is “where Veterans are,” she says. “Veterans operate by word of mouth. Social media is a natural extension of that.”

Dr. Foreman appeals to Veterans this way, “How do we build strong connections with you? Connections that might save your life or save the life of a Warrior you care about? There is me, there is you and woven around us there is this “system.” How do we build a bridge over it all and connect?”

She believes that technology is the answer. “We can use IT to reach out to people who feel suicidal. We no longer have to wait for them to call US.”

In fact, she points out that there are efforts occurring at this moment in social media. “Right now, Facebook users can tag concerning posts and get those posts reviewed by a national suicide prevention crisis center. We can also use smart phones to track mood, send data to Health Care Providers…maybe even predict changes in suicide risk.”

One of the difficulties Dr. Foreman faces in her efforts to use social media in psychology is provider attitudes.  The “biggest challenges [to using social media in psychology] are attitudinal. FEAR, very irrational, mostly by providers and system administrators.”

Concerns about privacy is also a common response from providers. But according to Dr. Foreman, “Well, the knee jerk reaction [is] that all tech is a “HIPAA” violation, or unethical…but they can never say why. Fear about confidentiality, and fear about crisis/suicide risk.  Fear about ‘boundaries’ and provider privacy. I also think many mental health providers tend towards being face-to-face and low tech. They feel uncomfortable with tech. Avoid it.”

Yet the benefits are great according to Dr. Foreman because she believes that psychologist could be “using technology to target risk-related content and bring crisis resources TO people in need.” Dr. Foreman also believes other providers need to become involved in social media and health 2.0. ““Primary Care Providers provide 80% of mental health care. Usually the last provider to see someone before suicide.”

“Humanistic providers have an obligation to use their social media presence in appropriate ways for patients.” There are reasons for Dr. Foreman’s vehemence. One moment of irrational sadness and a life is lost. It’s “very heartbreaking….Many people who die by suicide were not thinking rationally. A short, irrational, impulsive period.  It is preventable. It’s why I do what I do.”

For those providers who are concerned about using social media, Dr. Foreman suggests putting together a social media policy and sticking by it. Dr. Foreman created a social media policy which include personal rules for friending and contact requests from current and former clients. These policies help to respect privacy of both client and therapist. She has published them on her website.

There are other benefits.  “I also use socialmedia to network with a wider network of professionals. Bring knowlege to my patients. I’ve often helped patients use social media to connect to resources support during a therapy session.”

Another barrier to widespread use of social media technology in mental health is that  “More providers need education about [social media].  And to be paid when we use it as legitimate intervention….Health Care System administrators need education on the way I can scale care by having patients use technology to monitor and share symptoms.”

“I’d like communications technology to allow me to send a suicide risk assessment to someone in crisis and have that data go right into a medical record, to be seen and tracked by all providers. Primary Care Providers, too.  I’d like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term,” Dr. Foreman proposes.

Clients that Dr. Foreman work with are Veterans of the Iraq and Afghanistan wars. “Many Iraq/Afghanistan Vets feel isolated from other peers their age.  They have done and seen things they can’t discuss very often, [it’s] hard to feel a part of civilian life.   Many Iraq/Afghanistan Vets served in the National Guard.   [They’re] not part of continuous military community. Not really civillian though.  Many of our newest Vets are having difficulty translating military experience into civillian jobs.  [It’s] very stressful.”

The Veterans Administration has put some important measures into place to serve these Vets.  “The VA has preventive and supportive measures in place for the newest combat veterans, especially their feelings of isolation. The VA has special case managers that track Vets from these wars, keep them connected with services.  VA and VetCenters also try to have support groups focused on our newest Vets.”

april-foremanWEBSocial media is valuable to Veterans. “I find that they like knowing they can get support after they leave our session. Portable support amazing….Many kinds of support are a Twitter hashtag, Face Book page, google search away….” she relates.

Suicidal ideas can be associated with homicidal ideas. “Many times, when I see someone in crisis, they have conflict in their relationships, and want to hurt both self, and others,” Dr. Foreman states. Yet she clarifies that having ideas does not mean someone is making a plan. “Ideation can be normal….We are mostly born with an aversion to killing ourselves and others. Have to erode this to harm self or others.” It is only through watching or experiencing violence that people “acquire capability” to harm themselves or others.

One of the tools that Dr. Foreman has used in her practice is an app which allows clients to record their feelings on a daily basis. One reason why self-tracking, using apps, is helpful is because “pain/mood make it hard to accurately think back and self-report. Daily tracking is much better.” When the client self-tracks, the information can be used by the provider for prevention.  “We can prevent suicide by lowering [the] lethal risk during [the] period of intense emotional pain when you can’t think straight… clear thinking [is] often derailed in crisis,” she states.

When someone starts talking about suicide, what should you do?  Dr. Foreman says, “ I take that talk seriously, and am VERY glad to talk about it. To know and to help.  Listen to the talk. Address immediate safety first. Get help and a consultation.”  She also provided the link to the Nation Suicide Prevention Lifeline .  She said, “Veterans who use our Veterans Crisis Line will get a follow-up call from a VA provider like me within 1 business day. ”

One of Dr. Foreman’s desires is something that anyone reading this blog can do.  Share the links to the National Suicide Prevention Life Line and the Veterans Crisis Line and keep the public discussion of suicide going.  “Reach out!” she advocates.

Based on #HCHLITSS The Health Communication, Health Literacy and Social Sciences twitterchat.

Guardian Angels and Mental Health

Late January I’m reminded of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students.

One day, mid-semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up.

Irritated, I put on my stern face and asked that he stay after class.

He stayed behind and waited.  Something, perhaps his guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth.

“I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.”

“In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes.

I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation.

There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  it is a gift that you can share:  with knowledge you can become an advocate for yourself and others.

Mental health literacy is vital…it *can* save a life.

World Mental Health Day

Today, October 10th, is also World Mental Health Day.

 “Mental illness affects all of us, but there are still many myths and misconceptions about these disorders,”

Rosalynn Carter, Founder

Carter Center’s Mental Health Program 

I am re-posting (with a few additions) a post I wrote in May.

How do we de-stigmatize mental illness?   Reframe the discussion.  Okay.

So….What is mental illness?

It is a disease of the brain.

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understand this. The brain is an organ that can get sick just like the stomach or lungs.   Funding research from this perspective would be a huge step in the process of reducing the stigma of “mental illness.”

Join the cause.  Blog about mental health today , de-stigmatize mental illness AND donate to research on diseases of the brain.

Blogging for Mental Health: Reframe the Discussion

Today I am responding to the call for bloggers…

Join us on Wednesday, May 16, and publish a post on your blog about mental health’s importance, how we can diminish stigma, or the challenges of making lifestyle and behavior changes. Tell your story. Share your experience. Mental health affects everything we do. No matter what you regularly blog about, there’s a way to incorporate mental health.

When I think of ways to de-stigmatize mental illness is to reframe the discussion.  What is mental illness but a disease of the brain?

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understanding that the brain is an organ that can get sick just like the stomach or lungs and funding research from this perspective would be a huge step in the process or reducing the stigma of “mental illness”.

Fighting the Stigma of Mental Illness

Suicide has increased (largely due to the prolonged poor economic conditions) [Medical News Today]

90%+ of those who die by suicide have a diagnosable mental illness. [National Institute of Mental Health]

One out of five people are dealing wth a mental illness in any given year… this means that

EVERYBODY KNOWS SOMEBODY who is living with a mental illness!

Of the 20% living with a mental illness, many haven not received any treatment largely due to the stigma!

Resilient?

Just a random thought…

Have you heard people say

Children are resilient…they bounce back…don’t worry about them…?

I have and I just want to say to those people

If children are so resilient, why are so many adults in therapy?

Save A Life

This time of year reminds me of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students. One day, mid semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up. Irritated, I put on my stern face and asked that he stay after class.  Something, perhaps a guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth. “I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.” “In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes. I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation. There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  is a gift that you can share; with knowledge you can become an advocate for yourself and others. Mental health literacy is vital…it *can* save a life.