A true #RareDisease story

When medical students are trained, they’re told when you hear hooves, think horses (common health problems), not zebras (rare conditions). That’s why the zebra has been chosen as the mascot for people with rare disorders and diseases.

My story…

It’s difficult to say when I first noticed symptoms of a #rare connective tissue disorder. As a toddler, I remember sitting on the carpet in my family’s living room with my toys thinking I’d never feel good again. I also noticed I couldn’t do what my peers could do but I had no way of expressing that. The pain (due to increasing scoliosis), fatigue (from dysautonomia) and reactivity to environmental triggers (mast cell activation) got worse during adolescence. After a lifetime of repeatedly being dismissed and undiagnosed or misdiagnosed by doctors, what finally grabbed my attention and wouldn’t let go was a symptom called “early satiety.”

It came on suddenly. For three years, I searched for a diagnosis. And, for three years, gastroenterologists recommended treatments that made me worse. I accurately reported feeling very full after taking just a few bites of food. If I ate more, which usually would happen at dinner with a friend so as not to be rude, I’d then get painful bloating and spend the night in the bathroom vomiting. I was so accustomed to living with pain I probably underreported the bloating and cramping. It wasn’t until I passed out mid hurl that I finally went to the ER. The ER doctor documented seeing the vomiting and undigested food I’d had for dinner in my hair from having passed out.

I knew how sick I was when I realized that lying on a gurney with an IV in my arm giving me fluids felt like the safest place on earth.

All night long, they ran tests. Blood tests. Urinalysis. CTScan. My gastroenterologist ordered more tests. He eventually ordered a gastric emptying study after weeks of me living on a liquid diet. It came back normal. He then sent me back to the bariatric surgeon who’d removed my gall bladder. He looked at my bloated stomach in the CTScan image and recommended Reglan. On the way home, I Googled Reglan and realized my diagnosis was gastroparesis. Yet, because the gastric emptying study was normal, I never got a formal diagnosis. I also never took Reglan due to the “black box” warning about its side effects. Tardive dyskinesia — permanent neurological damage causing Parkinson’s like tremors would not be in my future. The early satiety, painful bloating and vomiting continued. My gastroenterologist admitted I’d been tested under ideal circumstances and that the test is just a snapshot in time and, so, it’s unreliable.

The foods they told me to eat weren’t healthy. Highly processed, high in sugar, mostly liquid meals, mostly carbs, very little protein, vegetables or fruit. Before this started, I ate a healthy, balanced diet. When I reported in my local EDS support group on Facebook what I’d been eating, members told me about SIBO, mast cell activation and hypothyroidism. Game changer!

I asked to be tested for SIBO. Bingo! I had it. I’d probably had it for many years. I knew I couldn’t be tested for MCAS because that test for the GI system isn’t available in NYS. Fortunately, I got a mast cell stabilizer prescribed and, then, when it became too expensive, began taking quercetin, a much more affordable mast cell stabilizing flavenoid supplement I buy from Amazon. I treated SIBO first with Xifaxin prescribed by my gastroenterologist. Then, I began managing it with oregano oil, another supplement from Amazon or a local natural food store. I asked my PCP to order lab tests for my thryoid per guidance from one of the EDS group members. Again, bingo, I learned I have Hashimoto’s which causes hypothyroidism. Because my hypothyroidism didn’t meet evidenced-based criteria for the insurance-driven endocrinologist to treat it, I found a functional medicine doctor whom I paid out of pocket who was willing to prescribe armor thyroid.

SIBO, MCAS and hypothroidism contribute to causing dysmotility in the GI system. Treating them made a significant positive difference.

Earlier, because I know my body, I knew that my craniocervical junction (where my head and neck connect) was probably compressing my vagus nerve, causing poor vagal tone. I found an open-minded PT who did gentle traction. Every time she relieved the compression of my skull on my neck, we both heard gurgling tummy sounds. So, I changed insurance and got on the waiting list for an EDS knowledgable neurosurgeon who did a long overdue cervical fusion to stabilize my mid cervical spine. The local neurosurgeon had decided I wasn’t yet a candidate for surgery and saw no connection between my neck and my digestive health. His neurologist colleague diagnosed me with somatoform disorder (i.e., it’s all in my head with no physiological basis). I decided to do whatever I could to improve my vagal tone. Through research on my own, I selected and began wearing an Aspen Vista Multi Post hard cervical collar to support the back of my head and a bite guard to stabilize my jaw due to TMJ to relieve the compression by my skull and neck on my vagus nerve. I also got acupuncture, did meditation with deep breathing, Tai Chi, stress management and began singing to improve my vagal tone. It worked!

Another big change was my diet. Instead of Ensure types of liquids and highly processed foods like cream of wheat, I eliminated all processed foods, wheat and cow dairy products from my diet and initially selected mostly low FODmap foods. I identified supplements that worked for me: quercetin dihydrate, chelated magnesium,, zinc, CoQ10, a good probiotic with lactobacillus and PQQ.

Although I still can’t eat all of the foods I used to love (wheat pasta, I still love and miss you), I now enjoy eating mostly low fat meats and fish as well as a lot of different fresh or frozen vegetables and fruits. As a result of the healing so far of my digestive system (i.e., leaky gut), my TPO ab (thyroid antibodies) — a measurement of autoimmunity — decreased by 100 points. Progress — surprisingly significant, measurable progress!

Recently, I learned that almost none of my rare disorders (gastroparesis, mast cell activation disorder, dysautonomia and some yet to be definitively identified form of EDS) are documented in my local medical records. I live in an very insurance-driven healthcare market where patients records are routinely audited. There are no evidence-based practice guidelines for treating what I have. My doctors want to get paid for what they do. Doctors in insurance-driven practice only get paid for providing evidenced-based care. So, they don’t include the rare disorders in the documentation they write. Many practices do chart reviews and decline to accept patients like me. It’s not unusual for people with rare, complex chronic conditions to have difficulty getting access to a healthcare we need no matter how good our insurance supposedly is. In the US, we have a metrics-based healthcare “system” that routinely fails people who have #rare conditions.

I wish I could tell you that if you have Ehlers-Danlos Syndrome (EDS), mast cell activation (MCAS/MCAD), dysautonomia or gastroparesis and do what I’m doing that you’ll get the same results. The truth is that, although we may have these conditions or experiences in common, we’re each different. Your food sensitivities may be different from mine. The supplements that work for me might be different than what work for you. The underlying causes for you might be different than mine. Making progress requires significant patience and perseverance. For me, it took several years of doing my own research, relying heavily on the experiential wisdom of others like me and lots and lots of trial and error.

Other things that helped were seeing an EDS-knowledgeable geneticist who makes treatment and care management recommendations and an EDS knowledgeable nutritionist who did nutrigenomic testing. The geneticist did genetic testing that showed “variances of uncertain significance.” So, I still don’t have a definitive diagnosis. Even with my EDS expert practitioners, I still do what my body tells me works. The only advice I have to offer is trust your body and never give up.

Focusing on increasing motility by multiple means — treating and managing chronic SIBO, MCAS, hypothyroidism and improving poor vagal tone — made a big difference in my ability to digest food, as well as my ability to function and my overall quality of life. I share my experience in hopes that it will be helpful to others who live with #rare, #chronic conditions.

#TogetherWeAreStronger, #RareDiseaseDay2018, #TrustYourBody, #NeverGiveUp


Chronic pain and the effect on patients’ families

EDS and Chronic Pain News & Info

Chronic pain and the effect on patients’ families – KevinMD – April 17, 2014 by 

People suffering from chronic pain are often angry.

They are trapped not only by an unpleasant sensation, but also by their limited treatment options.

The experience can lead to feeling not only like there is no end in sight, but also as through there is no hope. So strong are the associated emotions that I often call this state of mind “the abyss.”

All too often, when that frustration becomes too much, it can begin to leak out, turning itself outward onto others, particularly loved ones.  

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The Media’s Biased Reporting on Opioids

EDS and Chronic Pain News & Info

The Media’s Biased Reporting on Opioids — Pain News Network – June 14, 2016 – By Lynn Webster, MD

Stephen Martin, MD, EdM, an Associate Professor of Family Medicine and Community Health at the University of Massachusetts Medical School…points out that media stories such as these greatly worry him:

In conjunction with the new CDC Guidelines, these reports may increase anxiety among some patients who are able to function with their medications.  

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My 40+ year search for the right diagnosis

The photo above, from my First Communion, shows the signs ~ uneven shoulders, uneven hips, head tilted to the side. Of course, I was trying to stand up straight with my best posture, just like my classmates, when this photograph was taken. 2nd grade. The pain already had begun; but, at 7 years old, I didn’t know what living without pain was like. So, how could I know I had pain or how tell someone when I’d never experienced anything else?

In high school, the pain got significantly worse as did the fatigue. My mom used to say I never could keep up with the other kids. When I’d go to the mall, Tyson’s Corner Mall, which was brand new then, with one of my friends, I never understood why I my fatigue got worse and I’d get nausea and flu like body aches. Now, I know. People with Ehlers Danlos Syndrome (EDS) often have mast cell activation syndrome (MCAS). My mast cells, part of every human being’s immune system, would perceive the fabric dyes and scents from the perfume counter and scented candle store and other environmental triggers as a threat and, so, they’d cause inflammation throughout my body.

When I told my mom I felt sick, she took me for a physical with internist Dr. James Fitzgerald at Georgetown University Hospital. Dr. Fitzgerald pronounced I was in perfect health. My scoliosis presents as a subtle corkscrew rather than the more commonly recognized S curve. You can see the results of it and tethered cord syndrome in the photo above ~ my right shoulder and hip noticeably higher than my left, my head tilted to the right. That also shows my poor proprioception, my body’s inability to know where it was in space. The adolescent growth spurt I’d just had as a teenager caused in increase in my scoliosis because my tethered spinal cord wouldn’t allow for my spine to grow straight. Now, I know what caused my back and neck pain.

Years ago, when I finally finished my college degree by taking classes at night after work, I got rewarded with my first professional level job. The job involved frequent travel which my boss and colleagues probably assumed I’d find exciting and glamorous. Truth is, although I did love exploring new cities, flying, specifically the descent from high altitudes, made me sick. I hid that fact as much as I could. I didn’t know why descending from high altitudes made me sick. Now, I know it was due to EDS ~ dysautonomia and abnormally stretchy tissues that allowed the changes in cabin pressure to cause my blood pressure to take a nose dive while the plane was making a picture perfect, barely detectable descent and landing. The first time I saw a neurologist, in my early 40s, when I reported this, he ascribed it to anxiety. As a mental health professional who’s done plenty of psychotherapy from both sides of the couch, I knew it wasn’t anxiety. But, I’d never heard of dysautonomia. I had no clue dysautonomia is what caused my chronic fatigue. All I knew is that coffee and nicotine (via patch or gum since I’d quit smoking) helped me make it through the day. When I got home from work, every night, I’d eat and then crash on the sofa, falling asleep in front of the TV by 9 pm. I worked but, other than that, I didn’t have much of a life. That’s why I declined so many social invitations.

In my early 40s, in my quest to find an answer, I got diagnosed with fibromyalgia and chronic fatigue syndrome by one of Washingtonian’s doctors of the year who, not surprisingly, specialized in fibromyalgia. As Abraham Maslow observed, whenever the tool we carry is a hammer, every problem looks like a nail. He catered to my notion that the root cause of my problems stemmed from something wrong with my neck, which was where I had the most pain. Did I have headaches? No. I had neck, shoulder and upper back aches. My occiput hurt but, back then, I didn’t know what an occiput was. (It’s the spot where the back of your head connects with your neck.) I’ve got a large shopping bag full of Xrays, MRIs and CTScans to show for it that got me nowhere. Now, I’ve got MRI, Xray and CTScan images on my iPhone which comes in handy when I need to show them to a doctor. I’ve come a long way.

Looking back, I remember at least three times while on vacation when my stomach bloated so badly I thought it might explode. Usually, those “attacks” would happen on the first night of a trip. It didn’t happen often but, when it did, it was horrible. Since I didn’t know where to go for help and the painful bloating would subside overnight, I’d resume my vacation and not give it another thought. It wasn’t until I worked a very stressful job at the V.A. and, against my better judgment (but, because I was desperate to keep the first decent paying job I’d been able to find in five years), I agreed to take Cymbalta that I began to have chronic acid indigestion. When my doctor increased the dose because Cymbalta was doing nothing for my pain, I was clearly desperate. What happened next never occurred to me: liver failure. My doctor decreased the dose, needing to taper me down. It was then I decided to continue to taper down to get off Cymbalta altogether and to change doctors. The heart burn and feeling full after eating just a few bites of a meal, however, continued. My new PCP referred me to a gastroenterologist who prescribed PPIs (e.g., Nexium). It took years for my liver enzymes to return to normal. They were heading in the right direction but I was getting worse. So, I had my records sent to a new gastroenterologist who put me on his waiting list.

By the time I got an appointment with the new gastroenterologist, I had the sensation of a water balloon rolling around in my upper right quadrant. He looked in the electronic record system and said my gall bladder looked completely fine. The next morning, I took myself to the ER where they found my gall bladder was dangerously enlarged and full of stones. I told the surgeon I might have EDS. He said he could tell by just looking at me I didn’t have EDS. He said I’d feel 100% better after getting my gall bladder out. He was wrong on both counts.

My gastroenterologist encouraged me to try to eat a little more. When I did, as was the case every time, shortly after I went to bed, the nausea and vomiting began and I spent the night in the bathroom. By then, I knew it wouldn’t get better quickly. So, I’d sleep on the bathroom floor. That night, however, I passed out mid hurl, hitting my head on the shower on the way down. One second, I was vomiting uncontrollably, hoping it would end soon; the next second, I was picking my face up off the bathroom floor. My partner drove me to the ER. It was the first time I’d gone to the ER for one of these “episodes.” There, they did a CTScan, ultra sound and other testing and sent me home with Zofran, an anti nausea drug. They also documented that I had undigested food in my hair and had continued to vomit and experience severe pain until the IV had restored my fluids and pumped enough Zofran and morphine into me that it stopped.

My gastroenterologist ordered more tests. Then, he sent me back to the surgeon who pulled up on his computer screen an image of my enlarged stomach from the CTScan. He wrote an electronic note to my gastroenterologist recommending he prescribe Reglan and told me acupuncture would help. He never once said the word “gastroparesis.” I learned that word on the way home when I Googled “Reglan” on my iPhone. I also learned Reglan can cause tardive dyskinesia, permanent neurological damage that causes repetitive movements similar to Parkinson’s disease that can be painful and socially stigmatizing. I already knew what tardive dyskinesia was because seriously mentally ill patients who have to take neuroleptic anti psychotic drugs often get it. I cried and decided immediately there was no way I was taking Reglan.

I began to do my own research, reading medical journal articles and joining social media groups for gastroparesis patients. One of my literature searches found an article that showed Cymbalta can cause gastroparesis. My research also confirmed I probably had EDS. In January 2015, more than 40 years after my appointment with Dr. Fitzgerald at Georgetown, I saw a geneticist at Strong Memorial Hospital who confirmed the diagnosis of Ehlers Danlos Syndrome, hypermobility type. The geneticist told me to keep my appointment two years from then with the EDS expert geneticist in Baltimore because he didn’t know much about EDS. He also sent me for an echocardiogram to make sure I didn’t have indications of a potential aortic rupture, which is how actor/comedian John Ritter died. And, he advised I find a good psychologist who does CBT for pain management. Instead, I joined social media groups for people with EDS because there isn’t enough time in 45 minute psychotherapy sessions for me to educate my wonderful psychologist who specializes in providing supportive psychotherapy for people who live with chronic illness about EDS, dysautonomia, gastroparesis and mast cell activation syndrome. In fact, I’m still learning about them myself so that when I visit my internist/PCP and gastroenterologist I can request the tests and treatments I need because, the truth is, they don’t know and they don’t have time to learn. I’m fortunate their willing to listen to me. It’s an even better day when they respond.

Today is Day 21 of Ehlers Danlos Syndrome (EDS) Awareness Month. Most doctors, physical therapists and other health care professionals lack awareness and knowledge of how to diagnose and treat a person who has EDS, dysautonomia, gastroparesis and mast cell activation syndrome. The DC and Baltimore area serves the EDS community well because its where one of the few EDS researcher geneticists practices. As a result, a number of EDS knowledgeable physicians, specialists and physical therapists have set up practices there. I don’t have that here. That’s why I’ve traveled back to DC to get the health care I need.

It’s my hope that I’ll be able to return to the DC area, my hometown, so I can have better health care that’s EDS informed and timely rather than doctors passively relying on me to ask for tests to rule in/out conditions that are known to be recurrent and could cause further damage to my digestive system and referrals to specialists for conditions they’ve never heard of, like dysautonomia. I spend a lot of time each day taking digestive enzymes and other supplements that help my body digest the no/low fat, no/low fiber diet of small meals I now eat. I’ve come a long way, piecing together what I can from my research and learning from others who also live with EDS. I’m also working with a PT to do what I can to strengthen my spine which already shows significant signs of degenerative disc disease and osteoarthritis due to EDS. At some point, I’ll need more fusions and possibly a tethered cord release.

Hopefully, by next year, I’ll be posting an update from a much smaller, downsized, very modest, affordable home in Greenbelt, Maryland or preparing to make that move happen. In the meantime, I appreciate your awareness, understanding, love and support along the way.

Returning to a Stakeholder Economy and Getting Our Return on Investment in Public Education

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Before moving to Rochester in 2006, I lived in the Washington, DC area, where for many years I worked for organizations representing the local leaders and the teachers and other personnel who govern and work in public school districts across the country. And, for several years, I worked for the American Psychological Association, which is where my school mental health career began. After the shootings at Columbine High School in April 1999, Congress and President Clinton appropriated funding for violence prevention by providing school mental health programming and initiatives that involved unprecedented collaboration among the US Departments of Education, Health & Human Services and Justice. In November, 1999, I became the Mental Wellness Program Coordinator for the National Education Association’s non-profit affiliated organization, the NEA Health Information Network. From my work at APA and NEA, I gained valuable knowledge and insights from collaborations among amazing education, health and mental health researchers as well as policy experts nationwide. My colleagues and I have worked to advance research and implement evidenced-based practices, many of which  we hoped would be sustainable.

Then, 9/11 happened. As the designated “expert” on violence-related stress at the National Education Association, I knew there would be a significant need yet not much in the way of resources to respond. In 2001, 1 in 105 Americans was a member of NEA. And, the Federal government had only recently funded the Center for the Study of Post-Traumatic Stress. Back then, there was still much we did not know about how to successfully treat PTSD. I spent the next few days combing through the professional literature about resilience. From that research and with the help of a wonderful team, we produced a pamphlet that presented five (5) practical strategies for promoting resilience during times of trauma and loss. Weeks later, Pentagon officials selected that pamphlet as the platform to use with its civilian personnel and to be included among materials for the US Army and National Guard. Together, we made that happen with a relatively small amount of funding that SAMHSA had provided and with additional resources that NEA and NEA HIN provided. That probably was one of the most efficient uses of resources I’ve ever seen or been part of making happen. SAMHSA then awarded NEA additional funding to create versions for children and youth. So, we created an activity booklet for students in grades K-5 that corresponded with students’ language arts and math curricula under No Child Left Behind and a poster series for children in grades 6-12. At the same time, we progressed with producing what was already in the works prior to the 9/11 terror attacks — a multimedia training package for school leaders and staff about how to prevent violence, dropping out and substance abuse by promoting resilience among students and staff in schools and the communities they served.

In the years after the 9/11/2001 terrorist attacks, we faced several high-profile and lower-profile situations for which we used the resiliency pamphlet and corresponding activity booklet and poster series, as well as the multimedia training package. For example, during the DC sniper situation, leaders in our local public school districts and the staff who reported to them were the people who provided the necessary leadership and hands-on support for the communities that were directly affected. School administrators, teachers and other school staff made day to day, minute by minute decisions about how life would go on safely, despite the safety risk, and how to respond to the trauma. That was a beautiful example of how communities’ connections to schools function as strategically significant protect factors that contribute to making people in those communities and their local economies be more resilient despite the disruptive impact of violence, trauma and loss.

The wars in Iraq and Afghanistan changed Federal spending priorities. As a result, NEA HIN’s Mental Wellness Program ended. Since then, however, I continued to do consulting on an as needed basis, training UniServ staff (district-level union representatives) how to recognize, understand and respond to teachers and other school staff whose work performance may have been impacted by stress, depression, anxiety and other health and behavioral health challenges. I also continued to provide information for NEA members via NEA HIN’s web site. Earlier this year, I provided information for NEA members – teachers and other school personnel – about resilience and post-traumatic stress disorder (PTSD) (http://www.neahin.org/health-safety/mental/trauma-and-resilience.html).

Recently, a former Rochester City School District commissioner asked me what led me to Rochester. When I decided to leave the DC area, how did I end up choosing Rochester? The answer is I did my homework. I learned that Rochester was and still is, per capita, the most violent city in New York State. I had just finished almost 10 years doing school mental health and violence prevention work. I also knew that Rochester had an amazing housing market. Last year, Forbes magazine identified Rochester as having one of the best housing markets in the country. I also chose New York State and Monroe County based on the per capita expenditures for public education and health care. I knew before I moved to Rochester that a budget correction was inevitable at some point — that level of spending was not sustainable. Having worked as the executive assistant to the Chief Financial Officer at the National School Boards Association for many years and having managed program and project budgets, I understood the challenges. Based on what I saw, I thought, somehow, I could be of service.

Let’s stop and take a moment to think about this.

Rochester has one of the best housing markets in the country.

Imagine how different life in Rochester would be if we also had one of the best urban school districts in the country.

Imagine how it would be if we were also one of the safest cities in New York State.

Imagine what a winning combination Rochester would have and how that winning combination could attract investment, businesses and jobs to our city.

Before I left DC, Ruth Knee MSW, a Pioneer member of the National Association of Social Workers invited me to have lunch with her at the Cosmos Club. Over lunch, Ms. Knee shared wisdom and a special gift. She told me that Monroe County had been the premiere county for social services throughout the 20th century. And, she gave me a wonderful gift – a copy of her mother’s travel diary documenting her mother’s journey from rural Kansas back to the southern tier to rediscover her roots.

Today, I am inspired by my colleagues and the accumulation of knowledge and experiential wisdom that they shared with me that led me to decide to move to Rochester.

As a Resiliency Strategies consultant, I am trained to apply resiliency thinking to problems. We cannot control all of the risk factors in the lives of children and families. But, if we turn that lens around – if, instead of focusing on risk factors, deficits and weaknesses, we focus on enhancing and strengthening protective factors, assets and strengths — we can make it possible for our community’s children, families, educators and businesses to be more resilient. When we understand that we are all stakeholders in public education, we can and will commit to doing everything within our resources and our power – our tax revenue, other financial contributions, our time, attention and energy – to making our children, families, educators, employers — everyone in our community be more resilient.

Rochester has a lot going for it. Yet, we’re also facing some very serious challenges. Rochester is the most violent city, per capita, in New York State. People in our community live with significant disparities that align with race, gender, household income, age, sexual orientation, disability – pretty much every demographic category there is. Those disparities exist in probably every community. And, they create problems for us in Rochester, just like they do in other communities.

Still, Rochester has some unique, significant assets that, if used properly, could make us a truly resilient community —

  • one of the best housing markets in the country
  • having been the premier county for social services in the US
  • a city known for entrepreneurial successes for its small businesses
  • a relatively good public transportation system that serves all of its citizens fairly well and equitably
  • a city that does not have “food deserts” but, instead, has a wonderful Public Market as well as farmer’s markets in season, in addition to grocery stores
  • one of the best library systems in the country
  • vibrant arts, music and festivals
  • amazing parks
  • wonderful recreation centers
  • impressive higher education institutions, and
  • an impressively rich and diverse array of civic, religious, spiritual and charitable organizations that already connect and collaborate to work together, demonstrating our city’s wonderful civil rights history and culture that’s committed to being a truly diverse community.

Rochester also has a commitment to pre-K education. But, there is at least one key missing ingredient. Do we have a sufficient commitment and investment in quality child care? I suspect New York State regulations make it challenging for some creative, compassionate, trust-worthy and talented child care providers to be able to become full-time, licensed child care providers. It has been my experience that New York State has tended, with the best of intentions, to at times over-regulate, which has hurt us in terms of being able to attract business and provide much needed services.

Every community needs to provide quality child care. The return on investment – in terms of productivity and generativity from parents and other family member caregivers who can then work and contribute tax revenue and the longer-term return on investment from what results for the children who receive that quality child care – makes reforming regulations and making the investment in quality child care make both good economic sense and good social policy. What does not make sense is to do nothing because we cannot do it perfectly or because the regulations are so high in our well-intended attempts to control for safety and quality and provide oversight that we fail to do it. What does make sense is to reform the regulations and to make the investment because the social and economic returns on investment in quality child care are truly impressive.

Initial capital investments for quality day care start up businesses would require a significant amount of money.

How much money are we now paying to implement the Common Core standards and to prepare and administer high stakes standardized tests? Would businesses with solid histories here and those elsewhere that find our housing market and quality of life attractive be willing to invest in their children, our future citizens and their future workforce by making a financial commitment to quality child care?

Parents, educators, pediatricians, psychologists and social workers are not the only people “invested” in quality child care and early childhood education for children ages 0-5. Economists are also very interested. Why? The return on investment (ROI) is between $84K-$100K per child.

So, where is our money going now? Education reform has been dubbed the Reign of Error by former US Assistant Secretary of Education and Counselor to the Secretary of Education Lamar Alexander (1991-1993), education historian, professor, and author Diane Ravitch. Recently, we have heard parents, teachers and others call for NYSED Commission John King’s resignation. Even if Commissioner King’s resignation were to happen, scapegoating Commissioner King will not resolve the problems that exist with Common Core and Race to the Top. We cannot afford to scapegoat and “fail up” more of our public servants. We can do better than that.

During a recent visit to DC, I attended a policy forum focused on income inequality that included several distinguished speakers, including Hedrick Smith, a Pulitzer Prize winning former NY Times journalist and author of the book Who Stole the American Dream?  and Dean Baker, Co-director of the Center for Economic and Policy Research. During the Q&A portion, I asked a question about the corporatization of public education. Economist Dean Baker immediately understood my question was about privatization. When students’ test scores go down, corporate profits go up.

Now, budgets for public education and other public services, as well as public worker pensions, are at risk of being “looted” (to quote investigative journalist Matt Taibbi’s headline in Rolling Stone) by corporations and Wall St. hedge fund managers. During the recent Federal government shutdown – which was an artificially-created, man-made crisis – using Naomi Klein Shock Doctrine style strategy, Congress quietly passed significant portions of the Ryan (R-WI) budget. And, Teach for America, which apparently has many friends in Congress, benefited.

Our children deserve better. Our futures deserve better. Our children deserve highly qualified teachers who are held accountable. Charter schools are not held accountable in the same ways that public schools are held accountable.

The road to hell is paved with good intentions. Undoubtedly, my work is motivated by good intentions. Other than being a homeowner in Rochester, I have “no skin the game” because I have no children. But, having been the Mental Wellness Program Coordinator for the NEA Health Information Network from 1999 to 2005, I care deeply about the safety, health, mental well-being, academic achievement, performance and resilience of all of our children. And, I care deeply about the safety, health, mental wellness and empowerment — the professional autonomy combined with accountability — for all of our teachers and other school staff. I trust the vast majority of our teachers and other school personnel. I believe there are many good reasons why the 2012 delegates to the NEA Delegate Assembly passed a new business item asking for information about PTSD. And, now, having done my homework, I believe that Common Core and Race to the Top – the corporatization and privatization of public education – may have been significant contributors to NEA delegates’ decision. Today, based on pressures from Common Core standards and high stakes standardized testing, too many of our schools and districts fit the criteria for being a hostile workplace. Not only have I heard educators tell me that’s been their experience, I’ve heard students and recent graduates tell me they observed their favorite and most effective teachers experiencing it.

My work for NEA, which began after the Columbine High School massacre, will not be my final contribution to public education and school mental health. The Jefferson County, Colorado school board has decided to sever ties with Common Core and InBloom, one of the corporate entities and the staff involved in its implementation. Jefferson County had been one of the early adopters of Common Core. And, Jefferson County is home to Columbine High School. Perhaps, through the experience of a terrible tragedy that brought immense trauma and loss to their community, Jefferson County school leaders and staff know it is essential that their teachers, administrators and other school staff have the time, energy and other resources needed to be responsive to the social and emotional needs of their students and students’ families.

I will continue to encourage every citizen in Rochester and Monroe County and beyond to vote and to become even better informed and even more involved. As a resiliency thinker, I know that high expectations are a key protective factor. We as citizens and as voters — as stakeholders in public education — can do better. We can get beyond perceiving it to be a personal attack on our elected officials when we say that we will seek to hold them all accountable to us, their constituents, and their consciences, over their campaign contributors or behind-the-scenes deals that may have been made. They are our leaders, our public officials, our public servants. There is nothing wrong with requiring accountability; but, getting it requires citizens to work harder, to become even more engaged and to become even more informed.

Democracy requires a lot of work.

I remain a registered Democrat and an active member of Organizing for America (OFA). As Pulitzer Prize winning former NY Times journalist Hedrick Smith points out in his book Who Stole the American Dream?, what we have now is a shareholder economy, not a stakeholder economy. I am a stakeholder in public education, not a shareholder.

Common Core and Race to the Top – this “reign of error” in education reform — is benefiting corporations at the expense of teaching and learning, educational success and the healthy development of students and the health and mental wellness of educators. If nothing changes, perhaps, the adults who are educators will be okay. Sadly, statistics show that most will choose to leave the profession. But, will students be okay? K-12 students can’t vote. Children don’t have nearly as many lobbyists as corporations do. They don’t get to choose their personal circumstances. And, for the most part, neither do their families. Everyone does the best they can. In the United States, the only guarantee a child gets by law is that we will provide them a free and appropriate public education. We don’t guarantee them housing or adequate nutrition or parents who are guaranteed to have adequate resources – time, energy, money, skills, support from family, friends, health care professionals or social services – to adequately raise them. We don’t guarantee that their parents will be able to find for them safe, quality child care, despite the fact that safe, quality child care is an investment that, economists say, has a return on investment of $7-17 for every dollar spent.

Hillary Clinton was right when she said it takes a village. How can we assure that all children will get what they need and deserve? Or, will we let children continue to lose so that the corporations can continue to gain? Have we finally reached the tipping point? Are we going to keep our eyes on the prize this time? Or are we going to let ourselves get distracted, intimidated, fooled or divided? “Divide and conquer” strategies work, particularly when we turn on each other — including on our teachers and other public servants — instead of seeing what’s really happening. Now that we see those strategies for what they are, are we going to continue to participate in them and, so, continue to not only let them work but, actually, contribute to helping them work? Or, are we ready now to re-build a stakeholder economy, starting with our public schools, by changing what we are doing with education reform?

Here’s a summary of what we are doing, that’s not working, compared to what we could be doing, that is working, in Finland:

Global Education Reform Movement                  The Finnish Way

competition                                                                     collaboration

standardization                                                              personalization

test-based accountability                                         trust-based responsibility

school choice                                                                 equity

education as industry                                                education as human right

As stakeholders, it is up to us. We’ve done our homework. We want our resources – our time, energy and school tax revenues – to be invested in teaching and learning rather than testing. We want a connection to school – to classmates, teachers and other school staff and administration – to return to being the protective factor in children’s lives that is used to be rather than continue to see it be turned into yet another risk factor that is beyond our control. We are citizens, voters, students, parents, teachers, school administrators, social workers, advocates and activists who demand that the “heist” for money and power in public education be stopped and that public education be restored to being a fundamental human right – a civil right – that every child in our nation is guaranteed.

Thank you.

References and Other Relevant Resources

Baker, Dean and Smith, Hedrick. Event: “You need a raise! Fighting growing income inequality and the policies that foster it.” policy forum featuring speakers Hedrick Smith – Pulitzer Prize-winning author of “Who Stole the American Dream?”; Thea Lee – Deputy Chief of Staff, AFL-CIO President’s Office; Dean Baker – Co-director, Center for Economic and Policy Research; Lori Wallach – Director, Public Citizen’s Global Trade Watch; Lawrence Mishel – President, Economic Policy Institute; Moderator:

Solon Simmons – GMU Interim Dean, School for Conflict Analysis and Resolution; Chair:
Sandra Klassen – National Affairs Committee, Fairfax County Democratic Committee. Host Sponsor: National Affairs Committee, Fairfax County Democratic Committee; Cosponsors: Virginia AFL-CIO, Economic Policy Institute Policy Center, Center for Economic and Policy Research, Northern Virginia Labor Federation, Virginia Progressive Caucus, Fairfax County NAACP, Coalition of Asian Pacific Americans of Virginia, Unitarian Universalists for Social Justice in the National Capital Region, Alexandria, Arlington, Fairfax City, Fairfax County, Prince William County, 2nd 8th and 11th Congressional District Democratic Committees, PDA Virginia, NOVA MovetoAmend, and Herndon Voices. Twitter: @Income_Inequity

Bornstein, David. “Protecting Children from Toxic Stress,” The New York Times, October 30, 2013. http://opinionator.blogs.nytimes.com/2013/10/30/protecting-children-from-toxic-stress/?_r=0

Bornstein, David. “Schools That Separate the Child from the Trauma,” The New York Times, November 13, 2013. http://opinionator.blogs.nytimes.com/2013/11/13/separating-the-child-from-the-trauma/

Brennan, Morgan. “Cities Where Real Estate Is Ripe for a Rebound,” Forbes, January 1, 2012

Causey, Frances and Goldmacher, Donald. “Heist: Who Stole the American Dream? And How We Can Get It Back” Berkeley, CA: Connect the Dot Productions. http://www.heist-themovie.com/index.html, http://www.heist-themovie.com/image/Heist_Press_Kit.pdf

Dimino, Beth, Port Jefferson Station Teachers Union, “You Have Awoken the Mommies,” East Setauket, NY, Ward Melville High School, http://thepjsta.org/2013/11/13/dimino-you-have-awoken-the-mommies/.

Hallmark, Elizabeth. “New York State Department of Education and PTA Collude in Silencing Parents,” Smugtown Beacon, October 15, 2013. http://www.smugtownbeacon.com/news.php?viewStory=1068

Hallmark, Elizabeth. “The King and Us,” Smugtown Beacon, November 11, 2013. http://www.smugtownbeacon.com/news.php?viewStory=1087

Lears, Jackson. “Reform of the Reform,” Commonweal, October 31, 2013. https://www.commonwealmagazine.org/book-reviews/reform-reform

MacAluso, Tom Louis. “Brizard returns, kind of,” The City Paper. Rochester, NY, October 16, 2013. http://www.rochestercitynewspaper.com/NewsBlog/archives/2013/10/16/brizard-returns-kind-of

Malkin, Michelle. Big News in the Fight Against Common Core: InBloom-peddling Jefferson County CO superintendent resigns tonight: School board severs ties with InBloom


National Education Association Health Information Network and Center for Mental

Health Services, Substance Abuse and Mental Health Services Administration,

U.S. Department of Health and Human Services. Violence in Communities and Schools:

A Stress Reduction Guide for Teachers and Other School Staff. Washington, DC:

National Education Association Health Information Network, April 2001. http://www.resiliencystrategies.com/uploads/3/2/9/2/3292974/stress-guide.pdf

Accompanying Stress Self-Assessment Instrument – http://www.resiliencystrategies.com/uploads/3/2/9/2/3292974/stress_self_assessment.pdf

Powell, Willa. “How Game Theory Could Be a Game Changer for School Reform,” Smugtown Beacon, October 23, 2013. http://www.smugtownbeacon.com/news.php?viewStory=1070#.UmkFZgED9Bs.facebook

Ravitch, Diane. “Test-related Stress on the Rise in New York: CORRECTION!” Diane Ravitch’s Blog, November 10, 2013. http://dianeravitch.net/2013/11/10/test-related-stress-on-the-rise-in-new-york/

Ravitch, Diane. “Microsoft Abolishes Stack Ranking, Schools Required to Use It,” Diane Ravitch’s Blog, November 13, 2013. http://dianeravitch.net/2013/11/13/microsoft-abolishes-stack-ranking-schools-required-to-use-it/

Rutenbeck, James. “Are We Crazy About Our Kids?” California Newsreel with Vital Pictures, 2013. http://www.raisingofamerica.org/crazy-about-our-kids; http://raisingofamerica.org/sites/default/files/AreWeCrazy_Press%20Release-9-10-13.pdf

Sahlberg, Pasi. “The Finnish Miracle,” Chicago Humanities Festival, November 9, 2013. http://pasisahlberg.com/wp-content/uploads/2013/07/Chicago-HF-2013.pdf

Smith, Hedrick. Who Stole the American Dream? New York: Random House, Inc., 2012

Staff, Popular Resistance.org. “Pivotal Trans Pacific Partnership Revealed,” TruthOut, November 12, 2013. http://truth-out.org/news/item/20006-breaking-pivotal-corporate-dominated-trans-parcific-partnership-section-revealed

Advocating for professions in the corporatization of health care

nurses protest

In recent years, I, like many of my colleagues, have faced challenging decisions in my professional life as a result of the corporatization of health care. I have no problem with providing documentation for the work I do and the services I provide in order to get paid by insurance companies for doing it. However, I felt queasy when I saw the “bean counters” — the non-clinician auditors — enter the clinic where I worked to review client files to look for every possible reason to take Medicaid dollars back. What clinical expertise did these people have? Most likely, none whatsoever. It was all about money. The clinic got paid for what was documented. If the documentation was somehow imperfect or inadequate, the clinic risked losing reimbursement for services that were provided.

Perhaps because I tend to be somewhat OCD about doing documentation for my work, I wasn’t as concerned about the clinic losing money as I was that the clinic’s clients’ privacy inevitably had to be somewhat compromised by the auditing process. I was so concerned about the potential harm to clients that I chose to resign and file a civil rights complaint to the US Department of Health & Human Services based on what I believed to be a violation of HIPAA. At that time, the “minimum necessary” standard was defined much more broadly than it is now. The Federal regulations have since changed to make that definition more narrow, providing greater protections for patients’ privacy.

As a licensed clinical social worker who provides psychotherapy, I am bound to a professional code of ethics. The details of the requirements of that audit — which I purposely am declining to disclose here — presented me and my colleagues with an ethical dilemma. It put our obligation to protect client confidentiality into conflict with our obligation to provide services to clients. I later learned through an ethics professional development event that this dilemma apparently was experienced by many in my profession nationwide.

My thinking was that my clients’ trust could not be compromised. As professionals, we are required to adhere to our professional code of ethics and standards for practice. Yet, the corporate influences of the settings in which we practice often challenge us as professionals to do things that could erode patients’ trust and confidence. Sadly, many patients understand this and accept it because they believe they have no other choice. Maybe, they’re right.

Perhaps, by participating in an insurance-driven health care system, health care professionals inevitably end up providing insurance-driven rather than patient-centered care. For example, insurance won’t pay for two mental health visits in the same day. So, rather than providing a psychotherapy appointment with a therapist and a med check appointment with a psychiatrist or other prescriber on the same same day, we have to require the patient schedule those appointments on different days. If the patient has limited time or money for gas or public transportation to access that care, that’s his/her problem. If that situation limits the patient’s access to care in such a way that make it impossible for us to provide the quality or level of care the patient needs, then we as professionals have to choose between our obligation to the patient and our need to be compensated for our work. That’s a choice patients and health care professionals should not have to make.

The corporatization of health care, including some provisions of the Affordable Care Act, is requiring and enabling us to create impressive electronic health records. But, is it helping us provide more accessible and better health care?

Much like the concerns we now see getting media attention about the corporatization of public education — particularly the overemphasis on testing — there are valid concerns among patients and health care providers about an over-reliance on the metrics in patients’ charts. Metrics-driven care should not prevail over the use of good clinical judgment.

Here’s a personal example. I’m sure the care managers at Excellus mean well when they call to offer to help me manage my care for a diagnosis that’s documented in my medical record. However, that doesn’t change the fact that I don’t experience any day to day symptoms or difficulties functioning as a result of that condition. I’ve explained this each time a care manager has called me. I’ve even asked for help navigating the insurance company’s requirements so that I can better utilize my benefits for a different health problem that’s not so common that, in fact, does have symptoms that I need to manage daily and does impact my capacity to function. That condition, however, does not have the power of the “metrics” behind it. With no metrics-driven “red flag” in the computerized medical records system to prompt attention to it, I am left on my own to navigate and advocate for the care I need.

Recently, parents, educators and education leaders have seriously begun to respond to the corporatization of public education — e.g., No Child Left Behind, Common Core and Race to the Top — because they see serious challenges to local governance of public education and, ultimately, are concerned that the emphasis on standardized tests is taking too much time, energy and resources away from teaching and learning that promote problem solving, critical thinking skills, creativity — educational outcomes that many economists and others believe to be what our future workforce will need to make our democracy and our economy healthy and strong. Teachers and others in public education have experienced a considerable loss of professional autonomy as a result of corporate-driven public education reform. The same is true for health care professionals as a result of corporate-driven health care reform. Corporate driven public education reform has not been good for all students and teachers. Similarly, corporate-driven health care reform has not been good for all patients and health care professionals.

Health care professionals cannot lose the trust and confidence of the people who rely on us to be healers. Perhaps, the grassroots movement in public education against corporatization will pave the way for a similar movement in health care. For the health, safety and privacy of our patients and for the integrity of our health care professions, let’s hope so.

Resilience During Challenging Times

Resilience During Challenging Times.