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:


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
(978) 433-5983

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


Schools on Wheels: Helping Homeless Children in Massachusetts

A few years ago I spoke with a group of mothers who were concerned about their children’s school.  The neighborhood they lived in is called “transitional” and the school had an 85% turnover rate.  That means that 85% of the children who started school in the beginning of the year didn’t finish the school year in that school.  One hundred percent of the children received free breakfast and free lunch and it was the policy of the school to leave any left over cereal boxes out for the children to take home to share with their family for dinner.  

Moving to Massachusetts, I’m always struck by the wealth that I see around me.  The libraries are filled with books, the public school my son went to last year kept begging families to request free lunches so that they would qualify for Title 1 status.  YET, poverty is real and  homelessness exists in Massachusetts.

Recently WBUR, one of  two public radio stations in Boston (the other is WGBH, another sign of the wealth of this area of the country) had a story that I want to share.  It is about homelessness and school.

The statistics are staggering.


schools on wheels banner The story was about a teacher, Cheryl Opper, who read about the work of Agnes Stevens.  Agnes started Schools on Wheels in 1993 in Santa Monica, California.  It is a volunteer tutoring program to provide academic stability for homeless children.

In 2004 Cheryl started Schools on Wheels of Massachusetts in her kitchen where she trained volunteer tutors that she recruited from local universities.   She worked with 20 children from two family shelters.  From these humble beginnings,the program has served over 1700 children and has logged in over 24,000 tutoring hours.

Here is the radio interview about this program.  Please listen and learn more.

Reach For Your Best!

As a 4th grader in Jackson Mississippi, Ivor stood outside a hospital room and listened to her father scream, “Let me go…let me go…” as three men held him down for a spinal tap.  In that moment, she made her decision to become a physician, “I didn’t want to feel that disempowered again,” she states.  Her decision to work as a health communication researcher evolved from this experience as well, “I didn’t want other kids, I didn’t want any patients … I didn’t want any other families to feel that way either.”

Dr. Ivor Horn’s journey from Jackson to Washington, DC and to an Associate Professorship in Pediatrics at Children’s National Medical Center and George Washington University School speaker-ivor-horn-lgof Medicine included hardship and courage.  Only in medical school did she discover that her family had been homeless at one time, “the fact that no one told me I was poor or homeless …gave me the freedom to not put boundaries on what I could do,” she writes.

This is why Dr. Horn maintains a clinic in one of the poorest areas of Washington, DC:  Ward 8.  Some facts highlight the need in this area of DC: the obesity rate in Ward 8 is 42%, even higher than Jackson Mississippi and the average family income is $10,000 per year.   “The families I see experience challenging home lives a lot like that which I experienced growing up; I can look a kid in the eye and say with conviction that I know exactly what he is going through….” At her community health center, no one is turned away because they can’t pay.

As a physician, Dr. Horn is tested by her clinic’s schedule, “Our schedule allows 10-15 minutes per patient with a little extra time for complex patients…. those with multiple medical conditions that need multiple services.”  So she empowers her patients with her four rules:  “1) Sit down. 2) Listen, 3) Let them know we are in this together.”  And her final, the “doorknob rule- “You can stop me anytime during the visit, even if my hand is on the doorknob.”

Pediatricians need strong partnerships with parents.  What she has learned in her practice and her health communication research is that, “patients are more likely to follow a health plan they helped develop than one dictated to them.”  Her experience tells her that, “Managing a chronic condition like asthma is about what you do every day, not just during a crisis. Give patients and caregivers tools that make management part of their routine. That means asking about THEIR routine,” she says.

Now she is sharing this knowledge with health care innovation designers in what she calls ‘Inclusion by design.’  She defines ‘inclusion by design’ as “A conscious effort to include the minorities who need disruption of health care, IN the innovation, development, and design process.”

To Dr. Horn, it’s really a no-brainer. As she points out,   “Minority communities are actually early adopters of technology. They own more cell phones and are greater users of social media.”

Yet she is frustrated that, even though there is a wide variety of health IT out there, much of it is not reaching minorities or the underserved.  In a presentation at the Healthcare Experience Design, 2013 conference, Dr. Horn gave a step-by-step description of just how to reach more of the underserved with innovations.  For example, she pointed out that personal connections are key and active listening is necessary.  Developers need to communicate and collaborate with minority communities on innovation solutions.  “Trust and listening matter in health…and they matter in the design process,” she says. “Companies need to look to minority developers and Health Care Providers who are in the community already,” Dr. Horn states.

Dr. Horn recommends that designers start small or locally and then scale up.  When HIT designers bring up the barrier of cost or money, she makes the important point that bringing innovations that help those who need it most will, in the long run, reduce health care costs for everyone.

Dr. Horn practices what she preaches,  “When my patients see me in their neighborhood, it matters,” she says.  When she recommends apps for teenage patients with asthma “Their eyes light up and they feel empowered.  I’m on their turf.”

Knowing where her patients are coming from makes a huge difference. “I know what it’s like to have your phone or your electricity turned off.” And being a role model is important. “I know how important it is for my patients to see someone who looks like them and who tells them, I’ve been where you are and there is no excuse for you to not reach for the best.”

And that’s just what Ivor Horn has done since that fateful day in Jackson, Mississippi.

Content from:

#HCHLITSS Tweet chat transcript

Presentation at HealthCare Experience Design 201 Conference 

Dr. Ivor Is In:  MyBrownBaby Blog




“It’s the Neighborhood, St***d”

“Life is like riding a bicycle. To keep your balance, you must keep moving.” Albert Einstein

A study just published in the September 20 issue of Science gives a whole new meaning to moving.  The study comes from the data of over 4,500 low income families who participated in a large-scale randomized social experiment called Moving to Opportunity.   The poor neighborhoods were in 5 cities, Baltimore, Boston, Chicago, Los Angeles and New York.     Moving to Opportunity used a random lottery to offer vouchers to around 2,000 extremely disadvantaged families who were living in distressed public housing projects .  These vouchers  allowed them to move to mixed income neighborhoods, that is, better neighborhoods.  The study was done to determine the impact of where one lives on one’s health.   The research published in Science is based on comparative data of those adults who moved and those that stayed in the neighborhood.  It is longitudinal data, data obtained 10 to 15 years after the move took place.

Most of the households in the study were headed by African-American or Hispanic women, most of whom had not completed high school.   According to participants, their motivation for moving was to find better schools, have better apartments and get away from gangs.

Findings from the study are interesting.  First, those who moved to better neighborhoods increased their physical and psychological health. They had lower rates of diabetes, obesity, anxiety, depression and stress than those who stayed.

In addition, movers in this study had gains in happiness and well-being compared to those who stayed.  In fact, although the movers did not see any income increases, they experienced the same gains in degree of happiness as would be found in people who have $13,000 family income gain.

Poverty and poor surrounding take a toll on people. Researchers have surmised that  in the the poor are severely impacted by decision fatigue.    Abhijit Banerjee and Esther Duflo note in their book Poor Economics, decision fatigues cost for the poor.

There are”…many things that…[those who are not poor]  take as given. We live in houses where clean water gets piped in — we do not need to remember to add Chlorine to the water supply every morning. The sewage goes away on its own — we do not actually know how. We can (mostly) trust our doctors to do the best they can and can trust the public health system to figure out what we should and should not do. … And perhaps most important, most of us do not have to worry where our next meal will come from. In other words, we rarely need to draw upon our limited endowment of self-control and decisiveness, while the poor are constantly being required to do so.”

In other words, making difficult decision after difficult decision takes a  toll on mental energy.   The more choices one has to make through the day, the harder each one decision becomes for the brain.  As decision fatigue sets in the brain looks for shortcuts: either becoming reckless,  impulsive, or making no decision at all and doing nothing.

Racial neighborhood segregation is decreasing in the US but economic segregation is increasing.  The findings in Science point to health improvements due to decent, safe housing.   When in stressful, difficult situations–like living in unsafe neighborhoods–much mental energy is used.  Important decisions based on health recommendations, like healthy eating or doing physical activity,  for personal or family health, are either neglected or ignored.  In other words, perhaps when the movers in the study didn’t have to decide the best time to go to the grocery store based on when gangs were roaming the neighborhood, they had more mental energy to make the “healthy” choices at grocery stores that are recommended.

No matter the mechanisms, one thing is certain from the research on Moving to Opportunity:  moving from extremely poor, violent neighborhoods to  better neighborhoods improves health.  Shouldn’t making neighborhoods safer and easier to live in be a national public health priority?


Won’t You Be My Neighbor?

It’s a beautiful day in the neighborhood…

Where you live can affect your health in ways you might not be aware of.  So says a new study by Melody Goodman and her associates.  Her research focuses on health literacy and how it is related to residential segregation.

What is residential segregation?  In this case it refers to the ethnic or racial makeup of communities. Recently Reuters  reported a new study that reviewed the moving habits of over 100,000 families in the last 30 years.  According to Kyle Crowder author of the study from the University of Washington in Seattle, sixty percent of families leaving black neighborhoods moved to black neighborhoods and nearly seventy-five percent of  whites moved from white neighborhoods to another white neighborhood.   In fact, the majority of blacks, whites and Hispanics, regardless of income, continue to live in neighborhoods with residents of their own race.

Why is this important?

There seems to be a relationship between segregated neighborhoods and a variety of health risks ranging from infectious diseases to exposure to toxins (Osypuk and Acevedo‐Garcia, 2008).   For example, according to the CDC, exposure to benzene, a well known carcinogen (cancer causing toxin) is more likely among children in poorer urban neighborhoods.  Benzene is in gasoline, and is found in the air on highly trafficked streets. Since there are fewer playgrounds and sidewalks in poorer neighborhoods, children playing in the streets have increased exposure.

Access to health care is another problem.  How do you decide which doctor or dentist  to use in your community?  You ask your family, coworkers, neighbors, trusted others and get a smattering of stories about their experiences.  Then you choose among the recommendations and try to get an appointment with that health care professional.

Since more African Americans and Hispanics have lower incomes on average than Whites, they are more likely to either have no health insurance or to be covered by Medicaid.  Additionally they are less able to pay out of pocket for services.   A domino effect results…since providers don’t receive full reimbursement for their services they are less likely to locate their practice in minority communities.  (Bronstein et al., 2004)

When physicians and nurses live and work in your community, there is more of a chance for informal connections with them.  This increases the amount of  health information available in the community just because there’s a nurse or doctor or dentist in the neighborhood answering questions, (Cornwell and Cornwell, 2008.)  In poorer communities without health professionals there is less available health information.  With less informal contact, trust may be impacted.  Among African Americans and Hispanics studies find that there is lower rates of trust of health care providers.

Additionally with fewer health care resources, African-Americans and Hispanics are more likely to turn to community health centers or hospital outpatient departments and emergency rooms (Gaskin et al., 2007, Lillie‐Blanton et al., 2001).

So we come full circle.  Goodman and her colleagues looked at health literacy, or the degree to which a person can obtain, process and understand health information and services to make decisions.  Lower use of preventive services, poorer management of diabetes and other chronic diseases and more hospitalizations are associated with lower health literacy. When Moody and her associates looked at a diverse sample of patients at a community health center, they found that, no matter their race, ethnicity, age, education or even country of birth,  those patients who said they had attended a mostly white junior high school or were living in a mostly white neighborhood were more likely to have adequate health literacy than those who did not report either of these factors:   where they lived and where they went to junior high school impacted their health literacy.

Would reimbursement changes affect the living and working decisions of health care providers?  Could health literacy, taught to all, from elementary through high school, make a difference?

Won’t you be my neighbor?

Something to think about, don’t you agree?


Melody S Goodman, Darrell J Gaskin, Xuemei Si, Jewel D Stafford, Christina Lachance and Kimberly A Kaphingst, Self-reported segregation experience throughout the life course and its association with adequate health literacy, Health & Place, http://dx.doi.org/10.1016/j.healthplace.2012.04.010

Other citations mentioned in Goodman, et.al.

BRONSTEIN, J. M., ADAMS, E. K. & FLORENCE, C. S. 2004. The Impact of S-CHIP Enrollment on Physician Participation in Medicaid in Alabama and Georgia. Health Services Research, 39, 301-318

CORNWELL, E. Y. & CORNWELL, B. 2008. Access to expertise as a form of social capital: An examination of race-and class-based disparities in network ties to experts. Sociological Perspectives, 853-876.

GASKIN, D., DINWIDDIE, GY, CHAN, K, AND MCCLEARY, RR 2012. Residential Segregation and the Use of Healthcare Services. Medical Care Research and Review, 69, 158-175

LILLIE-BLANTON, M., MARTINEZ, R. M. & SALGANICOFF, A. 2001. Site of medical care: do racial and ethnic differences persist? Yale J Health Policy Law Ethics, 1, 15-32

Let’s get the message right!

Life in the Deep South is definitely different from life in say, Boston.  For one thing, most towns in the South don’t have sidewalks.  Mass transit just does not exist…it’s the car or nothing.

In the summer, it is HOT.   You have to stay indoors and you need air conditioning because it is HOT.  …and did

I mention that it is HOT!  I don’t mean 80 degrees, I’m talking about 95 degrees plus and that’s in the shade.  And it’s humid, often between 80 and 100 percent.  It doesn’t cool down at night either…you’re lucky if it’s in the 80’s at 11pm.

To cool off, it’s sweet ice tea.  If there is a public swimming pool, the water is warm as a bath and the pool is really crowded.  Most poor kids raise themselves during the day, because there is no school, no camps, no one to watch them…mom and dad are working.

Alright…the stage is set, the reader is wondering where this post is headed.  It is headed for a rant:   A rant about bullying, victimization and childhood obesity.

When I read about Disney’s recent boondoggled attempt at “addressing” childhood obesity, I wasn’t really all that surprised.  After all, I’ve come to expect insensitivity from movie producers that start their children’s movies with the child hero losing a parent.

Ads created by a pediatric hospital in Georgia are the same thing.  Just another grim reminder that medical professionals lack significant training in social determinants of health or for that matter, nutrition.  As one recent survey reveals, physicians felt the “greatest barrier to managing obese patients [is] lack of patient motivation.”  Oh really, doctors?  Then tell me, how do you explain all the money that is spent on dieting?

So another $50 million is wasted on an ad campaign telling people that the individual is the problem.  Only Disney knows the amount of money and time wasted on their Epcot debacle.

So let’s go back to the earlier description of summer in the South or a description of much of the United States.  There is little environmental support for children dealing with weight.  School physical education programs have been cut back or eliminated to reduce costs.  Snack machines and drink machines are part of today’s school setting.  Sidewalks and safe neighborhoods are the exception, not the norm, especially in low income areas.  Restaurants supersize portions and membership in the clean plate club is mandatory.  Parents in the workforce come home exhausted and rely on easy to prepare meals to make it.  Children are targeted by fast food, fatty food and sugary drink commercials.  Instead of decent grocery stores, fast food restaurants and quick stops are within walking distance of neighborhoods.  Fruits and vegetables are expensive to buy and can be time consuming to prepare.  Medications that children are required to take to be in school ‘cause kids aren’t allowed to be kids nowadays can reduce metabolic rates so it make it very, very difficult to lose weight or to keep it off.

Life intervenes.

So let’s stop talking about all these unmotivated individuals!  Bullying and branding people doesn’t help.  Instead put all that cold hard cash to good use…put in some sidewalks, clean up some playgrounds, put in a few public pools for crying out loud.

Public health, let’s get the message right.  Childhood obesity is the symptom.  The environment is the cause.

Communicating through photos: Health Advocacy meets Occupy Wall Street

Perhaps it was all started by Frank Warren’s Post Secret project in November 2004.  Whatever its beginnings, using stark note cards to tell a story in video or still photography has become an important and intense vehicle of storytelling on the Internet.

Teens have been using index cards in videos to describe their despair at bullying, their secrets and their understanding of faith.  One teenager, Ben Breedlove, just used this format in December 2011,  to describe three near-death experiences that gave him peace in facing death.  His family posted the video after his fatal heart attack on Christmas Day, 2011.

Occupy Wall Street has also been using this style, in still pictures,  to allow people to self-identify as part of the movement and to tell their stories.  Hundreds of people have added their stories.

One example of this compelling format is Stephanie Sauter’s Facebook post.   It is also an example of a message found in many other Occupy Wall Street narratives.

After conducting a random and cursory review of  200 October postings on  the Tumbler website,  160 of those postings chronicle the negative impact that health (and the health care system in the US) has on personal financial status.  These essays trend around similar themes.

Many of the 160 posts described major medical crises.  Health insurance was unavailable for  the following reasons:

1) Employers had discontinued providing health insurance, or employers didn’t provide it to begin with.

2) The individual who posted was self-employed and couldn’t  afford health insurance.

3) The individual had no health insurance due to unemployment.

4) The individual was working at “part-time” jobs which generally have no benefits.

5) Health insurance premiums kept rising and pay didn’t keep pace with the rise in premiums.

As in the case of Ms. Sautter, others experienced a worsening of their medical condition because of a delay in care, thus increasing the cost of their care in both money and health.

Care of eyes and teeth were of neglected out of necessity.

Denial of coverage due to pre-existing conditions and extremely high premiums due to rare or genetic conditions were noted.

Care for mental health, medications and therapy, were not covered by health insurance and required out of pocket expenditures.

Several veterans expressed the effect of war on their health and decried the lack of affordable mental health services.

Caring for elderly family members, to keep them out of nursing homes, has caused heavy financial burdens.

Even those with health insurance describe being overwhelmed by medical bills.  Many are using up life savings to pay for medical care or medications.

These postings create a clear and compelling picture of the enormous burden that is being placed on the citizens of the US.

Read the posts.  Then decide for yourself.  Why shouldn’t healthcare be a right for all Americans?

Hunger and Health Literacy

Do you believe that a child is personally responsible for going hungry over a weekend?  The thinking person would say, of course not.

  •  Did you know that when a child goes hungry over a weekend, they are not able to learn until Wednesday afternoon?
  • Did you know that children facing even moderate nutritional vulnerability are hindered in their cognitive development?
  • Did you know that hunger can:

                           … slow growth…

                           …increase illnesses, like colds and


                           …lower concentration and

                               alertness in school…

                            …inhibit brain development?

OK, these are the results of children going hungry over a weekend.  There are more than 17 million children in the United States at risk of hunger.

Are those children personally responsible for what is happening to them and their brains and bodies?

Children who have had this happen do not recover the lost cognitive capacity, lost health, lost school time.  Reasonable, otherwise generous, people suggest that growing up poor should not be an excuse for poor choices.

In a recent article in Time Magazine, “Child hunger is robbing us of the best of America’s imagination and ingenuity,” said the report’s author, John Cook, Ph.D., of the Boston Medical Center and Boston University School of Medicine, a nationally-recognized expert on child hunger. “Sustainable economic recovery depends on freeing children of the burden of hunger and malnutrition and supporting their optimal growth and development.”

Unfortunately success and failure in the US are too often attributed to the individual.  We become so focused on individual responsibility that we forget other realities.  For example, under-nutrition before the age of three fundamentally changes the neurological architecture of the brain and central nervous system, harming a child’s ability to learn.  If the brains of children are harmed by hunger and if we want to prevent poor health choices and health behavior in adults, then we cannot let anyone grow up in socio-economically disadvantaged situations that include short rations.  That is the only way to fairly expect decision-making that is healthy.

“The impact of child hunger is more far reaching than one might anticipate. Child food insecurity creates billions of dollars in costs to our society. Child hunger affects a child’s health, education and job readiness,” said Cook. “Our best universities are graduating more students from other countries and fewer from the U.S. because we are failing to prepare our children to learn and develop their best skills, creativity and abilities.”

There are things you can do to help!  One mom saw a need in Guilford County, North Carolina and started BackPack Beginnings.  This 100% volunteer organization is trying to reduce childhood food insecurity, one child at a time.  Check out the website, Feeding America and take action!