Category Archives: Disabilities

Pediatricians Say Florida Hurt Sick Kids To Help Big GOP Donors

CNN has done a great investigative job on this.  Here it is in short:

Now we find out Florida is a state that puts politics and money ahead of proper care for suffering, disabled children, according to this excellent investigative report. It’s because of extremely disproportionate donations to the Florida state GOP coffers by the medical insurance companies, as compared to their donations into other states’ GOP coffers.

A professionally-designed, approved questionnaire was used as a screening tool inappropriately to “filter out” children from the special Medicaid program which catered to those children.

Despite protestations from pediatricians,

“In the spring and summer of 2015, the state switched more than 13,000 children out of a highly respected program called Children’s Medical Services, or CMS, a part of Florida Medicaid. Children on this plan have serious health problems including birth defects, heart disease, diabetes and blindness.”

“Nearly half of all children in Florida, are on Medicaid, which has several types of insurance plans. The state switched more than 13,000 children into new plans, many of which did not have the same participating providers that treated these special kids.”

And so, too many of these kids did not get the special medical and surgical treatment they required, due to doctors in the new plans not having the needed additional education and/or experience or were not listed as providers.

“But some Florida pediatricians worry about children with special health care needs who, two years later, are still off the program.  The doctors aren’t just worried; they’re angry.”
  • The data analysis the state used to justify switching the children is “inaccurate” and “bizarre,” according to the researcher who wrote the software used in that analysis.
  • The screening tool the state used to select which children would be kicked off the program has been called “completely invalid” and “a perversion of science” by top experts in children with special health care needs.
  • In fall 2015, a state administrative law judge ruled that the Department of Health should stop using the screening tool because it was unlawful. However, even after the judge issued his decision, the department didn’t automatically re-enroll the children or even reach out to the families directly to let them know that re-enrollment was a possibility.

“These are the sickest and most vulnerable kids, and (changing their insurance) can mean life or death for them,” said Joan Alker, executive director of the Center for Children and Families at Georgetown University. “This is really very troubling.”

Six pediatricians from across Florida gathered to tell CNN their concerns about children losing CMS coverage. They accuse the state of hurting sick kids to help big GOP donors.

Dr. Rishi Agrawal, an associate professor of pediatrics at Northwestern University’s Feinberg School of Medicine, agreed, adding that Florida should have more carefully considered how the insurance switch would affect the children’s health care.  “The process in Florida was particularly abrupt and poorly executed,” he said.
“It was a scam job,” added Dr. Nancy Wright, a pediatric endocrinologist in Tallahassee who said that dozens of her patients with diabetes were removed from the program.”
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[ Photos from http://www.cnn.com ]
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20th Anniversary Celebration of Osler’s Web

 

This 20th anniversary celebration of Hillary Johnson’s “Osler’s Web,” garnered dozens of media outlets’ coverage and comments by prominent people. Osler’s Web is Johnson’s documentary of the discovery of, and subsequent governmental treatment of, those terribly suffering patients with ME – myalgic encephalomyelitis, a multi-faceted symptom disease (also known as “chronic fatigue syndrome” (CFS) which is a misnomer and mistakenly gives the impression of a simple fatigue – which ME is not!). It is not an easy read but, to read it, will give you a real understanding about this greatly disabling disease and why it is so easily dismissed by those ignorant of, and unwilling to accept, its severity.

The following comment by a spokesman for the CDC (part of the NIH), government agency that is prominently mentioned in Osler’s Web), requires a looksee because it shows the historic illegal, harmful, negative and dismissive attitude of the CDC (Centers for Disease Control and Prevention} :

“Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.”
— Dave Parks, Birmingham News

From the New York Times Book Review:  “Ms. Johnson’s book describes an important piece of recent medical history that might never have been recorded if it weren’t for her efforts.  Her carefully researched tale leaves us pondering the progress of medicine.”

Michael Kenney, Boston Globe:  “…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.”

Sam Husseini, In These Times:  “Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.”

There are many more reviews at “Osler’s Web.”

 

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#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissingME, myalgic encephalomyelitis, is a greatly disabling, debilitating disease.

ME has been pushed to the sidelines for several decades by the HHS, CDC, NIH and governments around the world, as a figment of the patients’ imaginations.  The patients have been insulted with taunts and accusations that they are not really sick. Far from the truth.

We, advocates and patients who are able, must continue to make our voices heard.  We need more research and granting of funds by National Institutes of Health to continue and advance the research that has already been started by non-profit organizations with private donations.

We have lots to do to catch up and make up for the time lost and the lives lost along the way.  Millions are counting on the world to wake up and recognize ME as a devastating disease to the patients and families.

Please take a look at the site below to familiarize yourself with ME and what is being done to bring it to the forefront in the eyes of the world.

Protest Coverage

 

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What is ME/CFS?

The Open Medicine Foundation – Nonprofit fundraising and support for a cure for Neuro-Immune Disease, Chronic Fatigue Syndrome, ME, Lyme Disease, Fibromyalgia and engages patients in research.

Please click on link below to get the real, true story in Q & A form:

Source: What is ME/CFS?

 

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One of #MillionsMissing

My daughter has ME – Myalgic Encephalomyelitis.  She’s one of those “#Millions Missing.”  On May 25th of this year, there was a world-wide campaign during which millions of pairs of shoes were placed in front of government buildings to show support for the millions of patients who are “missing” from participating in a “normal” life.  A life which they, against their wishes, were forced to leave, due to the debilitating nature of this horrible disease.

There is no known scientific diagnosis; no cure; and no recognized treatment.  Expert clinicians are still experimenting with medications, supplements, etc., while trying to find ways in which to help their patients.  Some things work – but not for long – to help relieve symptoms.  Each patient reacts differently to these “experiments.”  No such thing as “one size fits all.”

My daughter’s symptoms started approximately 25 years ago.  It was not a sudden onset like many other patients.

It occurred slowly over these many years.  The last two years were the worst.  She was still working, but truthfully, towards the end of 2014, I was positive she couldn’t continue with her job.  I don’t know how she did it, and looking back, she doesn’t, either.

She sort of set goals for herself.  Just another month, just another week.  She finally gave it up at the beginning of this January, when her body just gave up.

She cut her hair years ago.  She didn’t have the strength to take care of it anymore.  She used to have such beautiful, long hair.

There were many other activities of daily living (ADLs) she had to stop.  Frugally managing her time and energy allowed her to hold on for another year at the work site.

It wasn’t only the profound exhaustion.  There is the pain – in every part of her body.  She has told me that even her hair feels pain during the worst days.  The viral outbreaks.  The painful and debilitating chronic migraines which could last for days and keep her in bed, immobilized.  Did you ever hear of a migraine in the optic nerve?  Now, I have.

The “brain fog” and the constant wanting to put her head down and sleep.  Concentration was non-existent.  All these symptoms, put together as they were, forced her to bed.  Work was out of the question.  And she suffered all these and more, while trying so hard to keep her job and not appear to be sick at the office.  They frowned upon “being sick.”

She spends most of her days either lying on the couch or in bed.  It’s not where she would like to be.  She is forced to give up a “normal” life.

Talking on the phone is exhausting, and many is the time I’ve told her to hang up because I can hear and feel the extreme effort in her voice as it slows and gets slurry.

ME patients ARE NOT LAZY; THEY ARE NOT MALINGERERS.  Too many patients have lost their families and friends and even doctors.  These people refuse to believe the patient is REALLY SICK and they crossed the patients off their “list.”  They walked away.  That may be the most debilitating and greatest loss of all.

I’ve touched on only a very small amount of her symptoms.  The general public will find it impossible to understand that which patients go through in trying to manage from day to day; hour to hour.

Each day is different.  She never can expect that the next day will be better.  Too many times, it is worse.  There really is no such thing as “better.”  Sometimes she knows she has over-spent whatever energy (spoons) she had on the day before, and her body lets her know about it, for sure, during the next few days at least.

Myalgic Encephalomyelitis is a multi-symptom chronic disease.  All patients do not suffer in the exact same way; however, they do share most of the known symptoms.  As I said above, “each day is different” for each patient.

Sweetheart, if you are reading this, remember I love you so very much.  Words are not enough.  You know.  It is there in the depths of my being.

This post is my ode to you.  You are the most inspiring person I’ve ever known.  And you happen to be my daughter! 🙂

 

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Are We Getting Closer To A Myalgic Encephalomyelitis Biomarker?

 

In #MEAction‘s latest announcement, we’ve learned that the National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Derya Unutmaz’s latest grant application.  Dr. Unutmaz is the renowned immunologist at the Jackson Laboratory for Genomic Medicine.

[Dr. Unutmaz’s] research focuses on defining the optimal immune response and what happens during infection and chronic disease.

A few years ago Suzanne D. Vernon, PhD was introduced to Dr. Unutmaz, and knew his research focus was a very good fit for ME/CFS.  Dr. Unutmaz became intrigued with ME and the ongoing research to uncover its mysteries.  He decided to apply to the NIH for funding to expand the numbers of patient samples and types of quantitative analyses on the blood.

The National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Unutmaz’s grant application. He will receive five years of funding – totaling $3,281,515 from the National Institute of Allergy and Infectious Diseases — to find better ways to diagnose and treat ME/CFS. Dr. Lucinda Bateman and Suzanne D. Vernon, PhD are Co-Investigators on this project and the Bateman Horne Center will provide the required blood samples and correlating clinical information for the participating samples.

alien

We need Myalgic Encephalomyelitis information taught in medical schools and information disseminated to all doctors.

For too long, research in ME/CFS has been lean and under-funded for several reasons, including the shortage of accurately diagnosed patients available for research studies. The Bateman Horne Center – a clinic specializing in ME/CFS/FM and with a large number of patients who have been carefully and accurately diagnosed, and continue to be treated effectively – will partner with Dr. Unutmaz so that a Research Ready Army of well qualified patients can participate in this exciting research.

Source:  $3.28 million awarded for ME/cfs biomarker study.

See also:  Bateman Horne Center

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Discrimination By Insurance Companies Against The Chronically Ill

 

Despite the Affordable Care Act (ACA), commonly called “Obamacare,” and its requirement that medical insurance companies accept those with pre-existing conditions, insurance companies have found ways to deny services while keeping their eyes on the bottom line at the expense of those patients who are the most vulnerable.

An article by Angela Ostrom, published in Newsweek, points to the denial of quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  New and creative ways are found in which medical insurance companies could “skirt around” the lawful charge and focus of the ACA.

“One common strategy is to design plans so that medications for conditions like epilepsy, cancer [ME, fibromyalgia, lyme disease and others] and HIV/AIDS are all but unaffordable.”

“Federal rule makers are set to change that. They’re attempting to prevent insurance companies from denying quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  If they succeed, they’ll have, at long last, achieved one of the ACA’s most important goals:  ending discrimination against sicker patients.”

It is widely known that Big Pharma is getting rich upon the backs of unfortunate sufferers of chronic and/or serious and life-threatening illnesses.  These patients have huge medical and prescription costs – a greater percentage than those of us who are blessed with good health.  The more ill the patient is, the higher their cost of medical care, of course; however, the more ill the patient, the less income.  A paradoxical situation, but that’s the truth of it.

“The ACA bans insurers from outright refusing to cover people with pre-existing conditions. Unfortunately, that provision didn’t actually stop insurance companies from turning away chronically ill patients—it just forced them to find new and creative ways to do so.

Cutting back on prescription medication.  It's too expensive.

Cutting back on prescription medication. It’s too expensive.

“Insurers place many or all medications for a particular condition on the highest “tier” of their drug formularies—the lists of medicines patients are allowed to take, or off the formulary altogether. For medications in the highest tier, individuals are often required to cover 40 percent—or more—of the total cost.”

“Sadly, this technique for raising the cost of essential and often lifesaving therapies is now standard.”

There are other tactics that medical insurance companies use in order to make it more difficult for very ill patients to get the medication and care they need.  Too many patients don’t buy the medication they need.  It’s too costly.  Many patients cut back on their dosage of medication, trying to make it last longer, but while doing this, they render the medication useless as it then has no beneficial effect.

On another note:

Assistance from governments – state and/or federal – is like trying to trudge through a mud slide several feet deep, while going against the slide’s direction of movement.  Not a good picture.

Social Security Disability applications go through an automatic first denial.  One applicant’s application was denied along with the explanation for denial that had totally nothing to do with the applicant’s reason for applying for financial relief.  It was evident that the federal employee didn’t take the time to actually read the application and accompanying documentation.  Or, he/she was under orders to automatically deny.  This tactic sounds more reasonable, since Social Security Administration keeps complaining about its bottom line.

As with too many federal agencies, the weakest keep getting pushed “under the rug.”

[Pill box image from bingdotcom]

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New Jersey Federal Judge Paves the Way for Discrimination of Disabled Students By Religious Schools

Noticed on DisabiltyScoop:

A law suit was brought to the Haddonfield Friends School in Haddonfield, N.J. by Angela Rota, of Cherry Hill, N.J. in 2014, on behalf of her son Sky, who is now 12.

“As a private school with religious affiliation with the Religious Society of Friends (Quakers) and under the control of the Haddonfield Monthly Meeting,” [Judge Joseph] Rodriguez said, “the school was exempt from the Americans with Disabilities Act.”

The judge ruled that “Quaker schools are not required to provide services to students with learning disabilities, and that the small Quaker school had not discriminated against a 10-year-old fourth grader with attention dysfunction and dyslexia who was expelled in January 2014.”

“[Rota] said Haddonfield Friends should not be able to claim a “blanket exemption” on religious grounds because the school was not overtly religious, welcomed students from multiple faiths, and made no attempt to convert them.”

Sky was evaluated by a professional and found that, although he was a bright child, he suffered from learning issues, including attention deficit hyperactivity disorder, difficulties with listening and writing skills and dyslexia.

Sky’s parents’ concerns and professionally recommended assistance were ignored by the school, including the requested extra time for tests and providing individual and small-group instruction when there were writing exercises.  Also included in the suit were charges that his teachers belittled him in class.

SOAP BOX:

I believe we should be on alert.  Our hard-won rights are being washed away like the ocean’s water takes the sand as the tide recedes.  The Scales of Justice are weighted against those who are not in strong positions.  The weak are being pushed down and aside, as ultra conservatives are gaining (and have gained) stronger positions.

Disabled and minority citizens are finding their rights are being ignored in favor of those officials’ views who have louder voices and more power.  The “powers that be” are feeling their power, and they are puffing out their chests.  There is more than one way to interpret our laws and our Constitution, and those people are going for the strictest interpretation in order to keep the masses “in their place.”

People PLEASE VOTE.  Voting is the only way to make sure our “representatives” listen to our voices.   If they don’t, then they will have a very short time in office indeed.  The ultra-conservatives want it their way.  Our lawful rights are being stripped.

Religious freedom DOES NOT MEAN only for the few.  We don’t need to have the religious beliefs of some citizens rammed down our throats if we are not of that persuasion.

Freedom from discrimination of our beliefs is one of the most basic ideals.  It is the reason the original colonists came to these shores.  They wanted to practice their religion without discrimination.  Unfortunately, religious discrimination has reared its ugly head here, now.

Other forms of discrimination are appearing in stronger voices.  Religion and disability are not the only victims.  Sexual orientation is another.  I say, let live.  People of different sexual persuasion have a right to live the way they desire.  Are they hurting you, conservatives?  They want to live in peace like everyone else.

Recently, some discriminatory state laws have been signed into law, and some are in the state legislatures and will most likely be signed into law by governors.

Don’t let this continue.  Wake up!  The foundation of our country is in peril – literally and figuratively.

 

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Study: Students With Disabilities More Often Suspended At Charter Schools

Continuing the discoveries of discrimination suffered by children, students, and adults with disabilities:

In a first-of-its-kind report, authored by Shaun Heasley, in “DisabilityScoop,” a study shows students in charter schools, who are suffering some disability, are being suspended at a rate higher than typical children in public schools.

When discipline records in nearly 5,000 schools were studied at the University of California, it was found that there are great disparities in all grades, according to a report from the Center for Civil Rights Remedies at the Civil Rights Project.

“It’s disturbing to see so many of these schools still reporting such high suspension rates because that indicates charter leaders continue to pursue ‘broken windows,’ ‘no excuses’ and other forms of ‘zero tolerance’ discipline,” said Daniel Losen, the study’s lead author. “And we know from decades of research that frequently suspending children from school is counterproductive.”

“The high-suspending charters need not look very far to find much lower suspending charter schools,” Losen said. “So these findings elevate the need for oversight of charter schools and a continuing review for possible civil rights violations. There should be no excuses for charter schools that fail to comply with civil rights laws.”

It is a sad commentary on our educational system and indeed, our social structure, when children and adults have to be faced with, and suffer, the prejudice and ignorance of citizens who should know better.

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The Physically Disabled in the US Are Overlooked by Colleges

dis clip art

Psychology students in U.S. colleges are educated about the minority group of the disabled, the least.  Oh yes, the mental illnesses are the main focus, but according to a study published by the “Society of the Teaching of Psychology,” and authored by Kathleen Bogart, an assistant professor of psychology at Oregon State University:

“We are not properly preparing students to interact with this group.”

“Overall, the study found that all of the colleges in the analysis offered classes on psychiatric disabilities, but just eight had courses focusing on physical disabilities though such issues are more common.”

“Courses tended to take a medical approach, focusing on diagnosis, treatment and cures rather than looking at social issues like coping, acceptance, prejudice and policy implications.”

When a disabled person seeks to join the mainstream of life, he/she does so with the expectation of being accepted for what he/she can do, not for what they cannot.  Unfortunately, whether the disability is obvious or not (hidden – “you don’t look sick”), the majority of the “normal” population is sidelined and doesn’t know how to react to people who are considered “different.”

Not all disabled persons are outwardly disabled – they don’t wear a sign saying, “I am disabled.”  There are many diseases that humans suffer that cannot be discerned just by looking at the patients.

When the disability is found out, a series of circumstances or occurrences can begin to happen.  People will stare; they will be afraid to have conversation; they will ignore; they will assume the disabled person cannot behave or converse in a “normal” way; they lose trust and confidence in the person’s ability to perform the tasks.  The worst part is that the disabled person can be made to feel like a pariah; a person who is unworthy; a person who is not a person at all.

Many disabled persons seek the assistance of psychologists, or “counselors” or “therapists” in order to discover ways to deal with their disappointment, and the prejudice, the discrimination, and yes, the open hostility.

If psychologists are not taught how to counsel people with physical and medical disabilities, in addition to mental problems, when confronted with the above reactions to their disabilities, how can help be forthcoming?

There are many areas lacking attention in the U.S. universities’ educational programs, and more attention and a proactive approach by the psychology and medical advocacy communities should be given to this problem.

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[Disability clip art from:  bingdotcom]