Tag: bureaucracy

How Can the U.S. Constitutional System Cope When Big Fracking Bucks mean Big Toxin Dumping?

Posted by – August 27, 2014

With New Forms of Toxic Waste from the Fracking Bonanza Piling Up, What Must Be Done?

I really like the PBS documentary mini-series Constitution USA, because it brings forward the constitutional arguments that are so relevant to the problems we face in our country today.  It explores a worthy cross-section of important legal/constitutional debates with the depth that they deserve, and with refreshing honesty/even-handedness.  All the while it stays firmly rooted in our history, frequently referencing the rich backstories of our Constitution, the Bill of Rights, subsequent amendments and laws and the more controversial implementing actions.

The first episode gives an overview of jurisdictional conflicts that are ongoing between states, the federal gov’t and the individual citizens.  Some of the issues covered are the more obvious and well-known legal problems between states and the federales, like medical cannabis: can states trump the federal drug laws and re-legalize it? (cannabis tinctures and the like being legal from your local pharmacy in the past)
The Commerce Clause of Article I of the U.S. Constitution gives the federal Congress power to “regulate commerce between the several states,” and that is the basis for so much of our legal and regulatory system, from drug laws and gun control, to water use regulations for toilets (which I blogged about here).

Air and water pollution, with its effects on multiple states and countries, seems an obvious place for federal intervention to me, and the number of federal regs waived during the past decade—the carte blanche given to mountaintop removal and hydraulic fracturing—should concern all Americans.  In many areas, there ought to be more and better regulation: for example, given ProPublica’s recent reporting, it sounds like Ohio will be dotted with radioactive Superfund sites like a constellation is dotted with stars if the legislature in Columbus doesn’t get serious about regulating the toxic (and sometimes radioactive, including content containing RADIUM) waste that’s unintentionally unearthed as a byproduct of the fracking boom.

Inevitably, the various waste byproducts generated by fracking are dangerous if safety measures aren’t followed [see the facts on the difficulties disposing of fracking wastes].  Not only does the fracking process involve inserting hydraulic fracking fluids®, proprietary mixes of chemicals to facilitate fracturing, some heavily depending on known health hazards like benzene, into the earth, the extraction process also unearths things that should stay earthed, like naturally occurring radioactive materials, richly accumulated over eons, especially so deep in shale.  Radon, uranium, thorium, and especially radium have been confirmed living in the waste “brine” alongside the oil and gas (and the heady mixture of man-made chemicals, benzenes, et al, just injected) pulled from shale deposits, alerting all concerned to the risks associated with fracking wastewater.

gas production from the 400 million year-old, multi-state Marcellus shale formation, mostly from drilling in Pennsylvania and Ohio, is booming!

Reasonable monitoring and responsible handling is sorely needed, but the politicians that control how (and how much) these newer species of toxic wastes will be regulated see the state’s fracking bonanza as win-win-win-win, pumping in new jobs, new income/GDP, new tax revenue, and new troughs of campaign bribetributions to pig out on.

Politicians representing economically depressed post-industrial hell-holes tend to understand actually regulating fracking as putting speed limits on their state’s gravy train, or as outright flipping the railroad switch to turnout that gravy train onto a competing state’s track, so rival states profit more and more quickly. This may startle readers in not-America, but in the U.S., state governments are usually competing with other (especially neighboring) states to attract Big Business, including fracking operations, to start up in their state, often leading to a distressing “race to the bottom,” evidenced by things like the governor of Alabama meeting with German automakers to offer them more state-sponsored bribe money “incentives,” less costly labor, and fewer worker protections than other states where they could put down roots… this “jobs race” is deeply embedded in our political ecosystem. Even the more liberal representatives will likely prefer looking tough on polluters without actually regulating fracking in a meaningful way and risking accusations of “harming the district’s economy.”  Political cowardice and faux populist outrage at the polluters is the norm.

Of course, once you understand what Ohio has been through, “post-industrial” meaning that industry has left, offshored production to China or wherever had won the jobs race that year, joblessness everywhere, cities just “gone,” it’s easy to sympathize with the desire to be as fracking-friendly and job-attract-y as possible.  I think of Chrissie Hynde, singin’ “I went back to Ohio, but my city was gone…” and that was the ’80s. Gone Ohio cities are even gonier now.

Shale gas is the closest thing to a gold rush this country’s seen since the initial oil boom nearly 100 years ago, and desperation for gas drilling jobs makes it really hard, societally, to regulate and enforce with a long-view toward the public health consequences of benzenes, radionuclides, and so on.

In neighboring Pennsylvania, where the economics and politics of fracking are similar, radium was found in rivers where fracking wastes were released, and “internal” studies leaked to the New York Times in 2011 detail the alarming data:

…state records indicate that the radium levels found in Pennsylvania wastewater are much higher than those used in this study. Radium, for example, was found in Pennsylvania at levels over 18 times the number used in the this study. It should be noted, however, that this study did not detail actual cases of increased cancer. Rather, it modeled potential increases in cancer rates as a result of radium-laced drilling waste being discharged into large waterways.
… Asked to review the study, an expert on human health and ecological risk analysis said that it clearly shows that the drilling waste is not sufficiently diluted in some cases. As a result, the radioactivity levels left behind in receiving waters come close to reaching the threshold at which the E.P.A., under federal Superfund rules, requires a cleanup, the risk expert said.

For a look at the leaked documents and the relevant analysis, see Documents: Natural Gas’s Toxic Waste – NYTimes.com

The revelations from the leaked studies raise some troubling, difficult questions… one is, if you’re at the radioactivity threshold that triggers the creation of a federal Superfund site, how would you turn part or all of a river into a Superfund site?
What unintended consequences will radium in the water have on freshwater sealife and the humans that depend on these freshwater ecosystems? If it’s a blend of radionuclides, benzenes and other horrors, what effects do these have on lifeforms

a row of dark indigo-and-pink-fish-faced, orangey-throated Hath soldiers, mini-fishtank thingy mounted 'round their mouths to enable breathing in non-aquatic environments

Invasive uber carp become biped super soldiers after too much river radium? (Actually the Hath, a Piscine humanoid species from one of my favorite Doctor Who episodes, “The Doctor’s Daughter“)

when combined/interacting with each other? Godzilla was created from a similar unintended exposure to radiation. Freshwater ecosystems (especially in Ohio and due west) are already devastated by the invasion of nonindigenous uber carp, mentioned in the fourth installment of Constitution USA as well… what happens when you add radioactivity? Carpzilla?

This ProPublica exposé uncovers just how lax Ohio’s been about toxic waste.  Regulation is “muted” to the point they’ve become a top destination for other states to dump radioactive fracking waste.

These tanker trucks have 8 wheels and are colored a bright

Fracking wastewater is collected in special trucks like these in Pennsylvania, and moved elsewhere (Ohio?). Source: NRDC Switchboard Blog

Yes, hydraulic fracturing (“fracking”) has been used to get to oil and gas since the late 1940s. Yes, the radionuclides are originally “naturally occurring radioactive materials” (NORMs), not a problem if left in their natural configuration, spread out, trace amounts. But once you inadvertently pump large amounts of these out of shale, concentrate them, mix them with other terrible things, it becomes something different—TENORMs (technologically enhanced naturally occurring radioactive materials)—something you REALLY don’t want in your water supply.  Refer to the horrible fate of radium’s discoverer Marie Curie if you doubt that radium is hazardous.

To my core questions, things that I’ve brought up again and again in recent bloggings, what, why, are the systems and rules that enable, or fix (or exacerbate) our problems?
Similar to the inaction around the multi-state + Canada invasion of Asian Carp, something I’d previously blogged about here, the constitutional system we have provides ways to deal with the issue, but no one is stepping up and adequately addressing the problem. The multi-jurisdictional nature of our system enables struggle, appropriate checks and balances, collaboration, but also gridlock and EPIC FAIL if the human beings at the helm of the different gov’t branches and agencies are corrupt and/or ineffectual shampoo models.

What must be done about the toxic wastes left behind by the shale gas rush?

One can easily imagine the preserved head of James Madison judging medical cannabis, and indeed all medicines and drugs, the province of the individual citizen and/or “the several states,” as centralized decision-making for the entire country, especially where commerce and a man’s personal habits are concerned, would be perceived as positively British and anathema to the whole constitutional project.
But it is much more difficult to envision the framers’ possible positions on environmental law.  The founders, especially the Virginians, often distained the prospect of an industrialized United States, as debates over which ways of life were best, the most free, the most moral for the developing nation—profit was far from the only objective—were commonly considered as the Constitution took shape, and afterwards.  Cities in general, and wage labor for Big Business industries in particular, were largely seen as part of an unfree, corrupt, dirty system, “a wretched hive of scum and villainy” at odds with the Jeffersonian vision of a society of self-sufficient yeomen farmers, hyper-moral because they’re dependent on no man (except for all the slaves, though this is typically omitted from the sweeping “Empire of Liberty” narratives). The Constitution’s framers couldn’t hammer out a solution for phasing out the slave system that supported (and simultaneously threatened) the kind of economy they wanted—agriculture, shiny independent freeholds—much less did they legislate for socio-economic arrangements they hoped to avoid, factories and mills.

The consequences of large-scale industrialization, air pollution blowing cross-country, water contamination in one state affecting other states downstream, were inconceivable in the late 1700s. Our founding people don’t really offer us any guidance on these issues.
Madison tended to view state governments as unavoidably, intractably corrupt, and that was one of his main arguments for the Constitution and new, more robust federal government: that the people must have watchdogs to guard their rights and liberties against the corrupt excesses and overreaching laws of drunken state legislatures, another crucial check on the tyranny of the majority. But today, few would argue that the federal gov’t is less corrupt, or are better regulators. On the other hand, who else but the feds can deal with water pollution in a river shared by six states?

How can effective regulation and enforcement in the service of long-term public health outcomes be achieved in this time of corruption, deceit and regulatory capture?  How can our constitutional system cope?

Nick

this blog post inspired by my fascination with mutants and mutation, by mito activist Andy Williams who I hope keeps giving ’em hell about the toxic waste in Watertown, NY
and brought to you by the Letter F!

Diamonds in the Rough ‘n Tumble Webternets: What Med-people of Conscience Are Blogging (Part 4/4)

Posted by – August 19, 2014

Part 4 of 4 of the series When Life and Death is “A Matter of Policy”

For part 2, I wrote an overview of some of the bad things that have occurred when people in medical settings follow policy strictly even when it leads to horrible consequences, or in the case of Eric Garner, they don’t follow anything (aside from what the cops said) with horrible results.  In part 3, I covered the psychology of obeying.
For the last part, I look at what some med-people of conscience have said about obeying bad top-down mandates, the VA kerfuffle, and related issues as our medical ecosystems undergo tectonic shifts in the U.S. with very mixed, highly debatable, results.

I’ve always been drawn to posts blogged by nurses, doctors, RTs, et al…

Cartoon description: Just like the iconic photograph of five helmeted WW2 veterans working together to plant an American flag in a muddy clearing on Iwo Jima, but in this iteration, the five famous GIs struggle to foist forward a tower of VA paperwork instead.

“VA Red Tape” by John Darkow, Columbia Daily Tribune.

and for understanding the complexities of the overlapping universes (univerii? the multiverse?) of health care models and their rules and regulations, the medical bloggers out there are invaluable.

Dr. Marc-David Munk, blogging from his unique vantage point as “Chief Medical Officer” of an ACO in Central Massachusetts, explains the paradox behind the epic fails seen at the VA and other “big healthcare” institutions: the more top-down mandates, rigid accountability rules, and abstract “performance metrics” are imposed, the more you accelerate crapification¹, enable unaccountability and cooking the books, remove front-line staff’s decision-making powers, and lessen patient-focused medicine.
Dr. Munk deftly unpacks the weirdity:

It’s a common story to anyone who has been around big healthcare: senior management attempts to respond to a business problem by implementing a series of high level mandates that remove front-line management’s ability to think and make operational decisions.

…A cascade of things happens with high-level mandates: Senior management becomes obsessive about setting and measuring metrics. The degrees of freedom for people to make patient-focussed care decisions diminishes and every manager along the way starts to feel squeezed on all sides. Some find work-arounds such as the secret set of “waiting lists” kept off the books at the VA and the false reports generated by some.

See the entire blog post: The VA, Laws on Healthcare and the Dangerous Business of Replacing Front-Line Thinking with Corporate Mandates

Dr. Roy Poses, blogging fearlessly at Health Care Renewal, takes on the issue of top-down mandates from corporate managers with uncommon boldness, questioning the ability of the MBA managerial class to understand medical care long-haul at all, even pondering the role corporate psychopaths helming our big health care conglomerates might be playing in the present state of affairs. I applaud you, Dr. Poses! Your candor and insight (and pure gutsiness) is desperately needed. PLEASE keep bloggering on – KBO!

Dr. Michael Hein (linked to by Dr. Munk) sheds light on the 90% of the iceberg underneath the VA scandal we’re not seeing or addressing: the crisis of woefully scarce primary care.  Most civilians wait much longer than 14 days for an initial primary care appointment; 30 days if you’re lucky, up to 6-9 months depending on which part of the country you’re in.
Dr. Hein also linked to the always insightful OB/GYN Dr. Jen Gunter reining in “metrics madness” at the VA and elsewhere with her lasso of truth.

I hope to blog more about the issue of the supply of health care in the future.  The Affordable Care Act and Medicaid expansion (see my post explaining the Medicaid expansionboost access to insurance (and ostensibly health care) without a corresponding effort to expand the supply of doctors, nurses, hospitals, and so forth.  Though I disagree with libertarian sources like Reason Magazine on most issues excepting civil liberties and bad, counterintuitive regulations being bad, I gotta give ’em a big tip of the hat for addressing the supply of health care and the many unnecessary choke-points in the supply pipeline head-on: Video: How to Grow the Supply of Health Care RIGHT NOW!

Paul Levy, a former hospital CEO whose bloggings at Not Running A Hospital led me to Dr. Munk’s blog to begin with, is running down part of the health care supply problem: monopoly. Embedded in the Bay State, Not Running A Hospital is giving much needed scrutiny to the recent deal with Partners HealthCare and the Attorney General Martha Coakley, the behemoth corporation that owns Massachusetts General Hospital and Brigham and Women’s Hospital, both affiliated with Harvard, allowing them to eat South Shore Hospital and related doctors’ practices and ultimately become more scary and behemoth-y, the prices even gougier.  “…it cannot be in the public interest to permit a dominant provider to become still more dominant” Levy points out in his letter to the trial court set to rule on Coakley’s “anti-trust settlement”—read his full letter here.
He deserves not only an award for activism but an award for blog journalism, as he has pulled together an excellent collection of factual information about Partners HealthCare and the ongoing anti-trust dispute in a way spin-doctored news media don’t, and examined things, like Gov. Patrick’s unserious “wait and see” lip-service, that the news media won’t.

And this brings us full circle back to the concepts I began this series with: rules, regulations and policies decided in boardrooms, courtrooms and back-rooms have an enormous affect on all our lives, especially when you’re a “patient.”

Like Lambert Strether at (terrific blog critical of big finance) naked capitalism wrote, the way the corporations code their systems—the computer code, the 1s and 0s—increasingly is becoming the law. Notably in cases of big banks’ mortgage databases that perpetrated mass-scale fraud, the courts just assessed penalties per offense, “cost of doin’ bidness” for banks, and the big databases roll on, slapped on the wrist but essentially made legal after the fact.

Step one: Code the system. Step two: Rewrite the law to match the code, and grant immunity. It is, after all, better to ask for forgiveness than permission.

Code is law.

See the whole post here: “Code is law.” Literally. | naked capitalism

It’s symptomatic of a weak state and broken legislative branch(es). More and more, we need to lobby the corporations, the guys who control “the code” and the related bureaucracies—my focus is medical bureaucracy —just as much or more than the public officials who ostensibly run things in a democracy.
We’ll need good bloggers, good advocates, good blog-journalists and blog-activists. The aforementioned blogs are great examples of what that can look like.  I hope to be a part of it.

Nick

 

Part 1: the introduction/weird ventilator rule

Part 2: Paramedics, the VA and obedience gone wrong

Part 3: The Milgram experiment, the tendency to obey and medical contexts

 

Footnote:
1. crapification – coined by Yves Smith (nom de blag of Susan Webber, head of naked capitalism) to describe the ever crappier quality of consumer goods and services as everything inexplicably succumbs to “the race to the bottom”… “…long-overdue and largely futile backlash against the crapification of almost everything“…

Human Nature, the Tendency to OBEY, Bad Incentives, and the U.S. Medical System (Part 3/4)

Posted by – August 18, 2014

Part 3 of 4 of the series When Life and Death is “A Matter of Policy”

In part 2, I examined some of the bad things that can happen when people in medical settings apply “the rules” strictly, unmodified by the patient involved or the dictates of conscience. Now I’ll look at the what and why of human obedience…

The Milgram experiment on obedience to authority figures was the one of the most extensive and certainly the most well-known study of obedience ever conducted. The Milgram experiment was a series of social psychology experiments designed and run by psychologist Stanley Milgram in the summer of 1961 specifically to test how far “Just following orders!” goes with Americans, to answer “could genocide happen here if framed by authority figures as lawful?” “Could it happen here?

Dr. Milgram was keenly interested in how social context affects behavior, and also was an early creator of educational films. He made a film about the obedience experiment along with other films teaching social psychology.

Dr. Milgram, a middle-aged white professor with poofy hair, demonstrating social contexts, with shaving cream on his face

Milgram’s educational film: In certain contexts you do things you would not do in others. In this film clip, Dr. Milgram explains “…in this setting I willingly expose my neck to a man with a razor blade.” Source: this youtube clip

For the experiment on obedience, Dr. Milgram et al carefully selected the study participants to screen out psychos, any abnormal psychology excluded, so the subjects were your totally normal New England Christian people for the most part. He had researchers telling the subjects to shock the unseen “learner” in the next room when they supposedly got the memory questions wrong, shock people with the (not actually real) shock box, increasing the power of the shock successively.  In Milgram’s first set of experiments, an incredibly disturbing 65 percent of participants went all the way up to the massive experiment-ending 450 volt shock.

the infamous Milgram experiment shock box, with switches and in red letters EXTREME INTENSITY SHOCK

the infamous Milgram experiment shock box, with switches and in red letters EXTREME INTENSITY SHOCK

Men and women showed identical willingness to kill the “learner” with fatal shocks, though the experiment isn’t about killing, it’s about obeying bad things and inflicting pain on others. In the course of the experiments, the experimenter (the authority figure) would urge the subject to continue, to “please go on,” and re-assure them that the electric shocks were their job, part of something necessary, non-deadly and that the researcher is legally responsible. For the subjects, there’s the ambiguity of the volts on the board vs. the experimenter telling them it doesn’t cause “long-term damage,” the authority figure taking responsibility, and the overarching concept that this benefits science.

Med school psychiatry faculty had predicted only 1% of subjects would go to maximum shock, but in the initial experiments and all subsequent (and present-day) repeats of the experiment, regardless of political geography or background, consistently 55-65 percent will go all the way to XXX, the maximum 450 volts. Few variations, like changing the proximity of the authority figure, moving the victim closer, lower subjects’ obedience levels. In a variation where participants had to hold the learner’s arm physically onto a shock plate, compliance decreased but 30 percent still obeyed and administered the fatal shock.  Other variations, including age, gender, religion, politics, made no difference, revealing obedience to authority to be one of the few constants of social behavior, unaffected by time and place.
The urge to OBEY the bureaucrats in charge is immense. In this recent repeat of the Milgram experiment for the BBC, 9/12 went all the way to maximum shock 450 volts, only 3 refused.  The guy shown refusing seems a totally non-descript random middle-aged white male, so the people willing to tell the authority figure to shove it, that they won’t harm someone, period, fit no particular pattern. People of strong conscience don’t adhere to what you would expect, a certain mold or “type,” it seems closer to “the people you least expect.”

Milgram concluded:

“Ordinary people, simply doing their jobs, and without any particular hostility on their part, can become agents in a terrible destructive process. Moreover, even when the destructive effects of their work become patently clear, and they are asked to carry out actions incompatible with fundamental standards of morality, relatively few people have the resources needed to resist authority.”

Recommended resource: TED Talk on the Milgram experiment and the Stanford Prison Experiment

Milgram Experiment-like Reality in U.S. Hospitals?

The parallels with U.S. hospitals are disturbingly obvious here.

Doctors, nurses, RTs, et al…
if you’re ordered to follow rules that could hurt or endanger the patient, would you?

Not only do you have authority figures bearing down on you, the administrators have real power to impose repercussions, and you know the supervisors and bureaucrats up close, you’ve observed them in their natural habitat(s) and know that they could really ruin your week if not fire you if you’re “not a team player,” serious powers the Milgram experiment’s authority figures never claimed to have.  Throw in fatigue, patient censuses that often mean 1:30 nurse-to-sick-people ratios, and the self-evident reality that hands-on staff in clinical settings may only see a given patient for a few hours or one shift, then poof, but have to deal with the same supervisor(s) most/all work weeks, and you’re probably going to get 90-95% of staff obeying bad things if it were possible to run a Milgram-type experiment in a hospital situation.

The only time that the order to take me off my normal ventilator and put me on the hospital vent was ultimately not followed, was when a charge nurse (who we never saw) apparently stood up for me in the behind the scenes debate with higher-level administrators.  Then it is an order that authority figures disagree on, and therefore very different for the front-line staff actually doing it.

James Madison famously wrote: “If angels were to govern men, neither external nor internal controls on government would be necessary.”  Like the founding fathers set out to engineer checks and balances since the republic would be led by “men” not “angels,” the medical sphere should have real controls.  Not to be harsh or judgmental, I just think we should not assume frail humans, fatigued and under the gun to OBEY the boss, will be moral heroes 100 percent of the time.  As “Publius” and also “Publius” (James Madison and Alexander Hamilton) articulated in the Federalist Papers, banking on mankind to be consistently angelic is a really bad bet.  Not trying to malign anybody, just trying to look at human social behavior as it is.

Front-line staff need good conditions, whistleblower protections with real teeth, flexibility to improvise, trust in their decision-making, and the main “performance metrics” should be patient outcomes and happiness.  You can’t have bad incentives so divorced from patient outcomes, entirely non aligned with the task of helping people, and have functional health care.

VA hospital execs were given performance bonuses $$$$ for meeting certain metrics, like first appointment for veterans after intake within 14 days, and, quelle surprise, the incentives being to cook the books—and as far as I know that structure of cash bonus incentives is still in place—documenting fictions was exactly what resulted, it being in the hospital leaders’ own best interests to rack up performance pay and reassure the higher-ups that their impossible goals were going forward just swimmingly. This is why VA secretary Eric Shinseki was so clueless… the culture was to tell everybody at the top of the VA food chain only what they want to hear.

It’s a cold and bleak world, but there are still lots of good people, people of conscience in medicine who take their oaths to patients (e.g. “Primum non nocere,” first, do no harm) as serious life missions.  There are points of light, “diamonds in the rough.” Some of these med-people of conscience have blogs.

In part 4, the finale, I’ll show you what some of my favorite medical bloggers say about the VA fiasco and medibureaucracy.

I also write about disobeying the power structure back in June, see: Law and Order: When Is It Wrong to Follow The Law?

Nick

 

3/4 Series When Life and Death is “A Matter of Policy”

In Part 4, activism and rays of hope from medical bloggers

go back to Part 2, Paramedics, the VA, and when following policy goes horribly wrong

or go back to Part 1: introduction to the series/weird ventilator rule

 

 

Paramedics, the VA, and Eric Garner: When Deference to Authority Goes Horribly Wrong (Part 2/4)

Posted by – August 15, 2014

Part 2 of 4 of the series When Life and Death is “A Matter of Policy”

Annnnnnnnnd we’re back… in part one of this series, I detailed one policy driven by No Discernable Medical Purpose (NDMP), and that’s the “no foreign ventilator” policy hospitals have, affecting me in the past and maybe at points in the future.
In the past, I blogged about paramedics not wanting to move a dude suffering cardiac arrest “because liability,” No Discernable Medical Purpose (NDMP).

Here in the NY metro area especially, paramedics have been in the spotlight lately… not for good reasons, but in connection with the death of Staten Island gentle giant Eric Garner.  Garner, known in his neighborhood as “Big E,” was murdered in broad daylight by an illegal NYPD chokehold for talking back to cops who were harassing him for a past pattern of selling “loosies” (single cigarettes).  Garner, who wasn’t even selling anything that day, said “this stops today!” and “please just leave me alone,” among similar things, which apparently constituted resisting arrest and justified initiating force against him—an unarmed man—straight up police brutality.  Here in NY, Garner’s murder has occupied conversations, newsprint, blogprint, radio and TV, and the role of the paramedics who seemed to make no effort to resuscitate him was/is being investigated, and the EMS team involved was suspended pending the investigation.

It’s evident from the horrifying footage of Garner’s death that none of the normal medical protocols were followed, and all nurses and doctors who have talked about it on the record (see Eyewitness News 7 report) are unanimously flummoxed and dismayed at the unusually lackadaisical approach EMS took.  The New York Times spoke to Dr. Alexander Kuehl, who led Emergency Medical Services in New York City during the ’80s. “She certainly didn’t do her job,” he said of the paramedic girl on the infamous cell phone video of the Garner killing.
“She’s totally overawed by the cops. She doesn’t do her assessment at all. There was something very peculiar about her approach.” (full NYT article)

We may never know the full story. It’s apparent from the horrendous footage that the cops waylaid EMS, saying “not yet,” and also telling the crowd Garner was fine and still breathing in order to avert the whole neighborhood going into full-on rioting (crowd control). But that two EMTs + two paramedics took the NYPD assailant’s word for it and didn’t intervene in any of the usual ways is more than a little discouraging.  The decisions made, whether directed by the NYPD on the scene, or driven by weird liability fear-related policies, or the EMS supervisor, or all of the above, self-evidently do not reflect advocating for your patient or serving Any Discernable Medical Purpose.

Recently an EMS-related surreal hospital policy also grabbed headlines (in conjunction with the increased scrutiny around the VA scandal) when the policy directing staff anywhere outside of the main buildings to CALL 911 if a patient collapses was followed, and killed a Vietnam veteran who, through unlucky happenstance, had a heart attack in the hospital cafeteria.

The AP reported:

ALBUQUERQUE, N.M. (AP) — A veteran who collapsed in an Albuquerque Veteran Affairs hospital cafeteria — 500 yards from the emergency room — died after waiting around 20 minutes for an ambulance, officials confirmed Thursday.

It took between 15 and 20 minutes for the ambulance to be dispatched and take the man from one building to the other, which is about a five-minute walk, officials at the hospital said.

Kirtland Air Force Medical Group personnel performed CPR until the ambulance arrived, VA spokeswoman Sonja Brown said.

Staff followed policy in calling 911 when the man collapsed on Monday, she said. “Our policy is under expedited review,” Brown said.

Full story here: Veteran dies waiting for ambulance in VA hospital

In this Dave Granlund political cartoon, wheelchair inaccessibility serves as a visual metaphor for the inaccessibility of V’A medical care/doctors’ appointments writ large. Unfortunately, architectural barriers to medical care are too often non-metaphorical in many parts of the country.

In the initial local TV News reports, the implicated hospital said simply “we followed policy.”

“Just following orders.”

Sadly, this is yet another instance of “No Discernable Medical Purpose” (NDMP). The best medical treatment for this veteran easily WAS NOT waiting for an outside ambulance, after all “every second counts” with a heart attack. What he needed was heroic action by the staff hoofin’ it to get him to the Emergency Room with all possible rapidity, where cardiac crises are something U.S. medicine is set up to handle really well.  If their Emergency Dept. has no one who can rapid response with a gurney to code blues in adjacent buildings, that is a matter of leadership and policy too, NDMP as it was not serving a legit medical goal.

Deference to whacked-out policies is baffling, especially in the United States, where you’d expect a bit more spunk and middle-finger wielding to authority figures from the descendants of rebellious colonists who sparked a revolution over the British effort to inhibit their tea smuggling and rum running (among other things).  Here, that meek obedience—maybe even “willful blindness—the higher-ups like to cultivate led to horrible consequences.  Sometimes disobedience is needed, even essential, as I also discussed in the post Law and Order: When Is It Wrong to Follow The Law?

In Part 3, I’ll look at the psychology behind the tendency to OBEY, bad incentives at the VA, and how these problems can be ameliorated.

Nick

2/4 Series When Life and Death is “A Matter of Policy”

In Part 3, the Milgram experiment, James Madison, and hospital ethics
Part 4: activism and rays of hope from medical bloggers

or go back to Part 1: introduction to the series/weird ventilator rule

Medical Bureaucracy: Switching Your Ventilator “Because Policy” (Part 1/4)

Posted by – August 14, 2014

Part 1 of 4 of the series: When Life and Death is “A Matter of Policy”

As I mentioned recently in the quasi-mission statement of the blog, I create bloggings to ask the right questions, to illuminate the unseen issues facing us ignored vulnerable groups, or that’s the goal.  Within that is the idea that the questions mainstream media asks are THE WRONG QUESTIONS, and that the issues facing vulnerable groups that really need advocates (e.g. families with medically complex children, people on mechanical ventilation, the population who faces poverty solely/primarily because of their disabling medical conditions) are largely unseen… therefore I keep blogging to fill that gap, to voice the unheard concerns.

One huge umbrella of concerns affecting me and others in the aforementioned unseen groups is the top-down rules and regulations imposed on us.  For us, there are the laws, but in terms of the ad-hoc jumble of non-systems that control the services and supports essential to our survival—much less quality of life—there are all the rules and regulations implementing the laws, and rules more local to us coming from home health agencies, state regulators and Medicaid offices, hospital administrators, the list goes on and could cover a number of pages unheard-of except for in encyclopedias, and these rules and regulations govern our lives just as much as the actual laws (if not moreso).

The bureaucratic octopi have tentacles everywhere, and they’re especially consequential in medical bureaucracy where people are at their most vulnerable and any tweak in the rules can change the care, and suddenly life and death is “a matter of policy,” not just about the right care at the right time. That can kill.

Medical Staff Too Often Directed to Do Things for No Discernable Medical Purpose

The actual lived experience with medibureaucracy matters most here, as the data to prove or disprove the impact of diverse millions of rules on untold millions of individual staff and patients doesn’t exist. One especially vexing hospital policy that I run into frequently is the “no foreign ventilators” policy, and it is so frustrating because it’s purely a problem of legalese, not a matter of the appropriate medical treatment…it’s simply “a matter of policy,” outside treatments and prescriptions, and therefore outside of the patient’s right to refuse treatment. I don’t single out one hospital, all hospitals do this.  If somehow your hospital is the same company as the DME (Durable Medical Equipment) company providing your home ventilator, there’s probably no issue of hospital non-ownership or fear of an unknown machine, and it’d be fine, but otherwise, the bureaucrats are likely to deem the liability risk of “OMG foreign equipment” worse than the risks of changing you to a hospital vent, even if the opposite is true.

"No foreign ventilators" - cartoon by Nick Dupree.  This is a caricature I painted about how it feels when hospital staff try to take your home vent, depicted here as portable lungs, caricature of my own self on the vent, hospital staff depicted as hands on the lungs and a speech bubble: "gonna take you off your vent now mmmkay?"

“No foreign ventilators” – cartoon by Nick Dupree. This is a caricature I painted about how it feels when hospital staff try to take your home vent, depicted here as portable lungs, caricature of my own self on the vent, hospital staff depicted as hands on the lungs and a speech bubble: “gonna take you off your vent now mmmkay?”

I would like to see a study of the effect of taking people off their vent in favor of a hospital vent for No Discernable Medical Purpose (NDMP). This could be done as a basic hospital exit survey or a more detailed “qualitative analysis” or something to discern the wider reality: for most of the people affected, is switching vents solely because they’ve switched care/legal jurisdictions (and for NDMP) a traumatic and risky thing, or is switching to a hospital vent more like switching to a new toothbrush for most, no biggie? I definitely fall into the former category, my lungs maintaining a delicate balance against “compressive atelectasis“—my spine smushing into the right middle lung—equilibrium created by high volume ventilation that can quickly deteriorate, lungs partly collapsing and all hell breaking loose when hastily forced on a different form of mechanical ventilation with different (inappropriately low) volume nearly 18 months ago subsequent to an exploratory thingy in the OR.  But I don’t know that most permanently vented patients react similarly….

While this is also an issue of patients like me who are so RARE they don’t match any of the hospital protocols or norms of practice, square peg vs. round hole, my focus in this series is the medical bureaucracy’s whole canon of weird rules, potentially affecting anyone, especially insofar as the rules and policies create staff actions that serve No Discernable Medical Purpose (NDMP).

Nick

intro post of my Series When Life and Death is “A Matter of Policy”

In Part 2, Paramedics, the VA, and doing things for NDMP
Part 3: the Milgram experiment and hospital ethics
Part 4: activism and rays of hope from medical bloggers

OMG! Invasive Species: Asian Carp Confound U.S. System

Posted by – July 23, 2014

The Mississippi River watershed a post-aCARPalypse world, the Great Lakes fear Carpmageddon!

Verbzerg (third-person singular simple present zergs, present participle zerging, simple past and past participle zerged)

(slang, video games, strategy games) To attack an opponent with a large swarm of units before they have been able to build sufficient defenses.

From the game StarCraft (1998), in which the easily mass-produced Zerg units encourage such a strategy.

the aCARPalypse has come.  The verb to zerg, originally coined as “to zerg rush” with the quickly and easily mass-produced Zerg soldiers in the PC strategy game StarCraft, fits perfectly the Asian carp invasion of North America’s freshwater ecosystems.  No invasive species in recent memory is invadier than Asian carp—they have zerged up the Mississippi River and its tributaries—swarming everything with unbelievably-fast mass-reproducing carp, crushing biodiversity before our civilization is “able to build sufficient defenses.”

A comparison with a zombie apocalypse, or zompocalypse, is apt too, as everything in an ecosystem the Asian carp touch rapidly become all Asian carp, all the time.  This brings to mind the old adage “90% of everything is crap carp,” though it has long been even carpier than that…

…according to one study cited in the Asian Carp II Seventh Circuit case, 95% of everything is carp. (“A fish kill conducted near St. Louis in 1999 showed that the Asian carp constituted over 95% of the biomass in the Mississippi at that place and time.”)
Source: (Theodore) Sturgeon’s Law, as applied to the invasive fish species problem – Eugene Volokh’s law blog

Think how overwhelming the zerg rush of carp must be now, 15 years after that study!

"The Midwest Faces Carpmageddon!" painting by Nick Dupree, July 22, 2014

“The Midwest Faces Carpmageddon!” painting by Nick Dupree, July 22, 2014

Like most invasive species, and old monster movies, the monster was created (the alien invader carp introduced) via man’s folly and ignorance of potential unintended consequences.  Asian carp, being super aggressive bottom-feeders, were imported to om-nom U.S. fish farms clean beginning in the 1970s, but with seasonal flooding chauffeuring fish over barriers, it was only a matter of time before the Asian carp escaped sequestered aquaculture and swarmed the natural freshwater ecosystems nearby!

Bighead and silver carp have been the most problematic of the invasive Asian carp species in the U.S., filtering plankton from the water, robbing native species of food and living space.  And because of their bottom-feeding habits, they are difficult to catch with normal angling methods, so obvious counter-measures (giant fish fry) have been ineffective, though fishing efforts continue …the Natural Resources Defense Council has its Eat An Invasive Today! campaign.

It’s an ACARPALYPSE where everything becomes Asian carp, and our system of multiple state jurisdictions, state and federal regulatory agencies and “other agency’s job” inaction vs. the uncomplicated carp zerg rush upstream has been a total failure.   Our gov’t has been outwitted by carp.  Our system’s inability to mount a defense,

Wrath of Carp™

stop or slow the spread of one-fish-group supremacy (ecosystems becoming carp monocultures or carptocracies) has led to lawsuits by the upstream states and other parties who have LOTS to lose economically if/when the carp wave crashes into their ecosystems and wipes out biodiversity, wrecks local fisheries, implodes fishing economies and the dollars from angler tourism, fishing tournaments and all the fishermen there due to rich supplies of diverse indigenous fish would be gone.

The upstream states, especially the Great Lakes states so dependent on their native fish species, have understandably been pushing hard for the pertinent agencies to build defenses to protect the Lakes, specifically advocating “complete hydrological separation” of the Great Lakes and the Mississippi River basin AKA closing the key link to Lake Michigan, the Chicago Area Waterway System (CAWS).
Michigan, Minnesota, Ohio, Pennsylvania, Wisconsin, and affected indigenous tribes, all bordering the Great Lakes, filed a lawsuit against the U.S. Army Corps of Engineers who are responsible for building defenses and the Metropolitan Water Reclamation District of Greater Chicago who own the CAWS.

In the Asian carp I case, the Seventh Circuit Court of Appeals in Chicago upheld the prior denials of the pro-hydrological separation states’ claim vs. the CAWS operators and Army Corps of Engineers.  But while rejecting the plaintiffs’ claim because it held that the CAWS was being operated in a sufficiently anti-carp manner, the Court nonetheless ruled against the federales’ claim of sovereign immunity and their argument that federal agencies could never create a public nuisance because they have something like the “divine right of kings” and therefore automatically serve the public good.  The three judge panel acknowledged that the Corps acts on Congress’ orders but refused to immunize them from future public nuisance liability.

July 14, 2014, the Seventh Circuit Court ruled again on the suit against the Corps of Engineers and CAWS operators in what’s being called the Asian carp II case.  In this court opinion, the Appeals panel again upheld earlier denials of the Great Lakes states’ plea because of actively ongoing efforts to prevent the carp from getting through the CAWS.  But the Court also (finally) ruled on the legal question of “public nuisance” definitively, holding that YES, federal agencies can create a “public nuisance.” I’m not entirely clear on the exact definition and limits of “public nuisance” in its legal sense as used here, but this concept could be an important precedent on which future cases might be built.  As someone who was once a plaintiff against the state, I understand that the precedent of the federal gov’t itself causing nuisances and being held liable could be super important, though theoretical here.

The Seventh Circuit also rejected the feds’ rather… unique argument that the nuisance was solely carp “acting of their own accord,” and not their fault.  That concept of carp as legal actors brought oddities like “Our decision does not depend on the fact that the Asian carp are advancing upstream of their own volition,” into it, not the sort of phrase that one would normally find in a federal court decision.
Ultimately, the Seventh Circuit Court of Appeals’ opinion in Asian carp II reiterated the previous rulings’ reasoning that the gov’t is doing enough to halt the carp from devastating the Great Lakes, but wholly rejected blaming the carp alone.  “It is the defendants’ apparent diligence, rather than their claimed helplessness, that is key to our holding today…” the ruling stated.
For more about Asian carp II, and longer excerpts from the opinion, see Federal government action can be a public nuisance, Seventh Circuit holds – Eugene Volokh’s law blog

Competing interests are definitely the biggest barrier to a carp barrier, as shutting down the CAWS would upset the movement of millions of tons of vital shipments of iron ore, coal, grain and other cargo, totaling more than $1.5 billion a year, and contribute to the loss of thousands, perhaps bajillions of jobs.  The Chamber of Commerce weighed in with an amicus brief against closing the CAWS, and of course Chicago and the region doesn’t want it closed.

Narrower interests than this have blocked action.  The whole Chicagoland regional economy is a heavy player here with lots of clout.

that’s a lot of carp. Silver carp have special abilities like super-jumping, and in 2010 a kayaker in a race on the Missouri River was hit upside the head by a 20-30 pound jumping carp, knocking him out of the race.

But on the pro-hydrological separation side, there are five other Great Lakes states + the province of Ontario, and Indian tribes, and they have clout too and probably stand to lose even more economically, bazillions in income and countless jobs of multi-state economies, than the pro-defendant interests do if the carpocalypse wipes out the Great Lakes ecosystems. Economic impact on one or both sides of the dispute is a certainty because of inaction instead of action on the issue of invasive Asian carp in prior decades!

Carp jokes aside, I think that this long-standing dilemma raises deeply important questions about the American system itself and the sclerosis and decay afflicting the system:

  • when there are competing interests, who decides?
  • if the Judicial branch can’t force a decision on long-view ecological crises, who can?
  • what is the proper presidential role in the event of invasive species catastrophes?
  • why do none of the legislative solutions proposed in Congress pass?

At this late date, the CAWS may be a moot point as carp babies are evidently immune to the electric barriers and the carp have established footholds beyond the canal.
But the challenge of Asian carp and other invasive species, and the larger issue of good environmental stewardship and protecting our communities from toxins, won’t be going away.

Nick

 

Recommended resources:
Great Lakes Law: Great Lakes on the brink of Asian carp invasion thanks to “monumental government screwup” – great overview of the backstory

Fish Out of Water – The New Yorker – includes a wonderful Ralph Steadman illustration of leaping Asian carp

Final ep in the documentary mini-series Constitution USA – exploring the carpocalypse and other challenges to our constitutional system of divided powers.

In a Nutshell: America’s Regulatory Octopus and Non-working Toilets

Posted by – July 13, 2014

Part of a new series, “In a Nutshell,” in which I try to explain an idea in 500 words or less.

When the tentacles of regulation clog your toilet

The Commerce Clause of Article I of the U.S. Constitution gives Congress the power “To regulate Commerce with foreign Nations, and among the several States, and with the Indian Tribes,” and that is the basis for so much of our legal and regulatory system, from drug laws and gun control, to water use regulations for toilets.

Things like building the Hoover Dam to bring water and electricity to multiple states in the American Southwest seems a no-brainer for federal action. Air and water pollution too, with its impact on multiple states and countries, seems to me an obvious place for federal intervention, and the number of regs waived during the past two decades—the carte blanche given to mountaintop removal and hydraulic fracking—should concern all Americans. In many areas, there ought to be more and better regulation, and there are reams of highly questionable or unnecessary regulation too.

A classic example of this “regulatory state” gone awry is what happened with toilets in the ’90s. As the first episode of Constitution USA explores, at around the 40:00 mark, the Energy Policy Act was signed into law by George H.W. Bush in 1992, and water use standards were set for toilets in the U.S. at 1.6 gallons. While I’m the first to favor most water conservation and cleanliness measures, I have to acknowledge the unintended consequences of this toilet rule are bad.
Does the toilet in your home clog at the slightest provocation?  If your home/building was built or had a toilet installed between 1993-2000, this rule is probably why.  Toilet manufacturers immediately adhered to less water per flush, but that meant low-flow toilets.  It was years before toilet design and flush technology caught up, and until then, toilets failed with solid material of even modest size. This legacy of toilet failure is still keenly felt in apartment buildings erected between ’93 and the coming of the 21st century.

The blogosphere had a field day poking fun at Rand Paul for mentioning the non-working toilets at a Senate committee hearing on energy regulations, but dude-bro has a point when he said “the toilets in my house don’t work and I blame you…” (full text statementvideo evidence)
Though Paul’s rant kind of reminds me of that Seinfeld episode when Kramer and Newman hated the new low-flow shower heads installed due to related ’90s water regs, so they got crazy high-flow shower heads for circus elephants on the Yugoslavian black market (Seinfeld video), Randy nonetheless has a point. We need technology that works in our homes, and eventually you get innovation and mega uber toilets invented like the Sydney Smart because of the regs, but meanwhile EPIC FAIL occurs. I think a grace period or something to ease the transition is warranted.

I’d make a much broader point: the authority for all this regulation is the Commerce Clause, and all the case law built atop it, but libertarian-ish right-wingers like Rand Paul blame that underlying system… the underpinning system is not the problem as much as the corruption of the guys who write the rules (Congress and/or the federal agencies). That corruption is where things really go wrong. Removing corporate sponsors and corruption from our gov’t is desperately needed, and that is your answer. The wholesale dismantling of the regulatory system is not going to happen.
But criticism of the regulatory state is certainly understandable. What kind of system regulates toilets so rigidly they can’t manage waste of any rigidity, but can’t regulate the hydraulic fracturing industry’s radioactive waste? a corrupt mess of a system that has been affected by “regulatory capture” in a piecemeal fashion, with different but increasing-in-number tentacles of the regulatory octopus captured over the years.

acrylic painting © Vanessa Barrett

Ultimately, even if the Congress ends up frying a lot of the regulatory octopus’ tentacles, our Commerce Clause is going to mean that federal regulation of things like toilets continues, since toilets are sold across numerous state jurisdictions, and also affect water use regionally and nationally. No toilet exists in a self-contained pocket universe, y’know? But our regulatory state as-is is too messed up, the contradictions too great, and the trust of the rising generation too low-flow for it to be sustainable. Change will have to come for our regulatory octopi, too.

Nick

over 600 words – objective not reached 

Recommended resources:
First ep in the documentary mini-series Constitution USA – exploring the Commerce Clause and the state and federal legal tug of war built in to the constitutional system. Can guns built, bought, and used ONLY in Montana be federally regulated under “interstate commerce?” (the Commerce Clause)
The Atlantic -Rand Paul and the 19-year Libertarian War on Low-flow Toilets – the issues here are long-standing…

High-Speed Rail Vital for PWD and the Nation; Why Have the Promises Evaporated?

Posted by – March 28, 2013

High-Speed Rail (HSR) would help everyone and boost the economy but would disproportionately benefit PWD—people with disabilities—because for a significant percentage of us, it’s difficult to impossible to use the airlines. And with the TSA confusing the grit you get on your hands operating a manual wheelchair with “bomb residue” again and again, fewer PWD will bother (President Obama mentioned the TSA-free joy of rail himself). High-speed rail has become a necessity for the social and economic relations of Americans, but sadly the promises the Obama Administration has made on high-speed rail have not been fulfilled.

I want high-speed rail that goes up and down the Eastern United States at 500mph so I can go from NYC to my family in Washington DC and Norfolk.

Imagine the economic benefit HSR could bring to the United States and Canada, if we had two-hour trips from NYC to Toronto or four-hour trips to Montreal or Ottawa! Imagine the ability of West Virginians to zip in an hour to Washington DC for jobs that simply don’t exist in Appalachia! Imagine the life-blood this would be for tech start-ups, when suddenly software engineers and DIY white hat hackers can whoosh in from Quebec to Boston or NYC for in-person collaboration! Imagine people able to work in New York but live in relatively-inexpensive Cleveland. That kind of economic game-changer is necessity. That kind of hope is a necessity, and President Obama really tapped into that…

…and then did absolutely nothing.

That’s right, nearly three years after the sweeping promises about Chinese-style bullet trains, not a single yard of HSR has been put down. We didn’t get the high-speed bus system The Onion proffered as a post-austerity alternative either. 😛

The below AC 360 segment, “Keeping Them Honest,” explains where the billions in funding Congress appropriated for high-speed rail went. It all went to slow rail. As is also true of the news stories that I share on Twitter, I don’t always agree with everything in a given article I post, and in the case of this “Keeping Them Honest” segment, I don’t agree with CNN reporter Drew Griffin that allocating federal funding to make extant Amtrak routes less slow is “a boondoggle,” nor is the general thrust of the report that the entire thing is a shameful waste of taxpayer dollars representative of my point of view. I know people who use that very Vermont route, and those routes need funding too. But Drew Griffin is RIGHT that the Obama Administration and President Obama himself promised Americans high-speed rail, on camera, numerous times, and so far it’s a promise they’ve not kept; the only project the U.S. Department of Transportation (DOT) allotted HSR funding for that can actually be construed as high-speed rail, is the California High-Speed Rail Authority (CHSRA) project to connect San Francisco to Los Angeles with a one-way travel time of at least 2 hours and 40 minutes, and it’s been bogged down with NIMBY (Not In My Back Yard) lawsuits and red tape so severely that not a single track has been laid. He’s RIGHT to ask, “you’ve promised us bullet trains like the Europeans and Japanese have had since the 1980s; where’s the high-speed rail?” Why can’t we have nice things?

This high-profile failure to deliver public transportation technology that Americans need should trigger much more discussion. Why is the executive branch unable to deliver on its promises, even after Congress appropriated the funding necessary? We need to discuss the general direction here, because we’re headed for eight years of Democrats running the executive branch and still our trains are stuck at 1950s speeds, we have a 1950s power grid, and our existing transportation infrastructure (rail, roads, highways, bridges, airports, ports) got a D+ for 2013 from the American Society of Civil Engineers (ASCE). At least one of America’s bridges may crumble this year and lead to a mass casualty event. It feels like MALAISE.

The California High-Speed Rail Authority (CHSRA) is now evidently so chastened by ridiculous NIMBY lawsuits arguing the deleterious effects of high-speed trains on “aesthetics,” that they’ve begun to move forward with a pared down, slow-speed rail plan that they promise is only temporary (the “blended plan,” they call it). The founder and former head of CHSRA has now come out against this plan, since it doesn’t meet the Prop 1A ballot initiative’s requirements for true high-speed rail. If truly rapid transit for the masses, and all its social and economic benefits, can be thwarted long-term by some wanker micro-minority concerned about—not environmental impact, since rail reduces pollution vs. cars and buses—aesthetic impact alone, then that says something very distressing about where we are headed.

I don’t usually blog about transportation, but I want this space to showcase writing about the unreported and under-reported stories, amplify the voices of the unrepresented, and this issue hasn’t gotten a third of the coverage and discussion it warrants. Our leaders make sweeping, epic promises and too often the media doesn’t follow up in any sustained way. I do wish the private sector would lay high-speed rail and bring in the newest Japanese bullet trains, a mega corporation would definitely get more media discussion than the CHSRA, but they would likely give up after a week of the BS posed by regulatory hurdles, intractable NIMBYites, and the red tape nightmare of building across multiple state and county jurisdictions.
We have to put it out there to the people, over and over again, that we need current technology for high-speed rail, we need truly rapid transit, widely available and accessible, for many reasons, but freedom of movement for the poor and disabled populations who have the greatest difficulty accessing transportation at the top of the list.

Nick

The Social vs. Medical Model of Disability, Communities Will Be Forced To Choose

Posted by – April 7, 2011

You may or may not know about the medical model and the social model of disability.

Many disabled people have rejected this model. From the Taxi Driver Training -- Democracy, Disability and Society Group, UK

The social model of disability sees disabilities as normal aspects of life, not medical problems requiring "treatment," with the real problems coming from inaccessibility and ignorance of disabled people. From the Taxi Driver Training -- Democracy, Disability and Society Group, UK

I wanted to talk about the social model of services and supports for people with disabilities, and barriers to implementing it.

When you think about disability internationally, most disabled people in countries around the world are taken care of by their own families and their own communities. In Alabama, where I’m from, and in many of the poorer states, they didn’t get the medical model at all until federal funding in the 1960s. Prior to that, all you had was a kind of quasi-social model, with families and neighbors taking care of their disabled children, the same way they did in the 19th century and from time immemorial. A new social model of services and supports would essentially work like an enhanced version of that, with disabilities normal phenomena that communities live with and provide for.

In the first world countries, as families are working almost entirely outside of the home, they have no recourse but to use government services to help take care of their disabled children and adults. In Alabama, the attitude is that the most harsh, spartan medical model is all they can afford, and that they can’t afford to innovate. They have missed an opportunity to save money by re-imagining a social model that would put the power back in the hands of families and people with disabilities, instead of forcing them to spend on treatments that the medical model wants for them.

Across the country, budget cuts are removing the medical model more and more from our lives, because the states can no longer afford the kind of medical services that they’ve been paying for. The medical model won’t be the force it has been without enough public funding. So there’s more need than ever to implement a new social model of services and supports. In one of the conferences that I attended (TASH Boston ‘02) there was a session on what drives people to put their loved ones into nursing homes. And the number one reason found in studies was that when someone becomes incontinent of bladder and bowel, the family doesn’t want to deal with it, and puts them in a facility. There was one story where a mother wanted to put her autistic son in a facility just because he couldn’t figure out how to zipper his pants, though he could otherwise engage in self-care. This is the institutional bias, up close and personal, and it is ridiculous. We can no longer afford to put people with disabilities in segregated, medical model institutions. The funds saved by turning the institutional bias on its head and closing more of these terrible, outdated, freedom-killing institutions is great. We can’t afford these awful dinosaurs financially, and we can’t afford it in the human toll, in the human potential and spirits that are locked up.

To escape that fate of being put away forever in a nursing home, I had to fight Alabama Medicaid policies that would cut off home care services at age 21. My campaign, Nick’s Crusade, led to the Dupree v. Alabama Medicaid lawsuit, which used the Olmstead decision to end the practice of Alabama cutting off ventilator dependent people from in-home services once they turned 21. It was a victory that helped half a dozen people stay in their homes, but it didn’t solve the underlying problem, that even in the home, the medical model of home nursing care tends to segregate, restrict and limit the liberty and potential of people with disabilities.

I ended up having to leave college because of problems with home nursing care, and eventually I began to outlive my family’s ability to take care of me, and ended up relocating to New York City in August, 2008. Because of difficulties getting home care approved and started, home nursing agencies that are dysfunctional and cruel, and relentless ablism faced by me and my partner Alejandra, my first 378 days in New York were spent in a city rehab hospital. It was my first stent in a facility, and I learned a lot about the system that keeps unnecessary institutionalization going and told the world in The First Video Blog Series From Inside An Institution In History. Make especially sure to watch my videos What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced and Too Many Setbacks To Count (about the barriers and delays to getting home, with music).

Because Alejandra and I love each other, we made the decision to spend our lives together, as many people with and without disabilities do. However, most people with disabilities living in the U.S. run into the so-called “marriage penalty” if they receive federal Social Security benefits, which are reduced by one-third if two recipients marry. Choosing to declare our commitment to each other despite this policy, we held a commitment ceremony in Central Park on June 6, 2010. It was also an opportunity for others in the community to learn about and share their experiences with this injustice.

Getting the supports needed to maintain my health and safety, attain freedom to access the community and resume college remain problematic. I write and draw webcomics, such as Theodore Roosevelt and the Rough Riders vs. Zombies. I was going to show my work from a table at the MoCCA Festival, and ended up canceling because we didn’t have the help for getting me up in the chair and out to the festival. For me as a disabled man, “freedom,” means that I have good caregivers around me that can help me do stuff. Without those people, I’m stuck in my room at best, and, at worst, dead.

Nurses, personal care attendants, and other home caregivers will always remain enormously important in any model because in first world countries the cost of living is high, and thus the people doing the bulk of the care will be the ones who can do it without losing their apartment. Paid supports should be budgeted by the disabled person (see individualized budgets and the Cash & Counseling program) so that both the caregivers and the patient aren’t constantly battling middlemen–agencies and Medicaid, and so the patient can give their best staff higher pay and bonuses. This essay isn’t meant diminish the importance of nurses and PCAs but to re-imagine them as part of a support community that form around people with disabilities; with families and communities that refuse to shelve their people in prison-like nursing facilities, that refuse to use a strict, heartless medical model inside the home, that say NO to materialism and profiteering, and instead focus on care and caring. Personal care is incredibly intimate and sensitive, caregivers see and touch and care for wounds, deformities and vulnerabilities that no one else sees, this is soulful and special work; it should never be callously commodified or turned into a cold assembly line in a nursing facility. The people who are good at going into someone’s home and making them clean, comfortable, giving them care and freedom, are very special people. In a new social model, friends and neighbors of the disabled person partner with and lend their support to these special caregivers, helping them and assisting them to assist their patient. The caregivers in turn helping the friends to help their patient. They care about each other and collaborate to help the disabled person. The community loves and supports each other.

Relying on Medicaid to give me ALL the assistance needed to live a real life in the community will always be difficult as long as Medicaid is locked-in to the medical model. It’s near impossible without friends and volunteers in your community lending some support. What is needed is the social model: normalization of disability: for society at large to start seeing people with disabilities as equal members of families and communities, instead of undue burdens. If someone in the community had cared about the kid who couldn’t manage the zipper on his pants, he wouldn’t have been at risk of institutionalization at great cost to his community. If the community would give their time and love more, we’d need Medicaid, the increasingly dark, Kafkaesque bureaucracy that pays for services for disabled people, less.

There are plenty of ways for the community to support people with disabilities. When I was hospitalized for several months in early 1992, Bettie Hudgens, the founder of the Communications department at Spring Hill College, where my mom taught, created a sign up sheet so that volunteers would visit me every day, so I would have someone checking in on me during the hours mom was teaching. The signup sheet allowed the community to organize around me so that every day was covered. We need that kind of community building now more than ever.

Communities will eventually be forced to choose, will they pay more and more for Medicaid as its red tape continues to render it hilariously dysfunctional like a Soviet department, or will friends and neighbors pitch in to help the elderly get in and out of bed, and change soiled clothes so they wouldn’t have to be segregated in institutions, so their people with disabilities will have less involvement with the heartless Medicaid bureaucracy and be less exposed to the whims of the politicians that fund them. It’s up to us to implement a new social model, as the old models begin to collapse.

Nick

Nick’s Essay on America’s Decline, with Big Solutions (long)

Posted by – May 15, 2010

I’ve been away for quite some time, I know, but I haven’t stopped thinking about public policy and the way things are going.

They aren’t going well. I followed the health care reform debate with a magnifying glass throughout, and came away deeply disgusted in both the final product and the process that made that sausage.

We desperately needed SERIOUS reform to the United States’ health care non-“system”; we’re in the richest country on Earth, but among OECD nations, our health care is at the back of the pack. No country with our level of wealth has our level of dysfunction in basic health care.

Instead of “the change we need,” what we got when Congress was done kowtowing to big insurance donors and passed the damn thing, was incremental change to half the health care industry (the private insurance market) while leaving the half the government actually runs, Medicaid and Medicare, nearly untouched. The goal of the Obama reforms is to give more Americans access to the health insurance market, more people buying insurance, with subsidies to help the poor afford private insurance. The health insurance industry stands to rake in BILLIONS! I was devastated with disappointment.

Meanwhile, the frenzy on the right wing about this bill (which was nearly a straight copy and paste of the 1993 Republican health care bill (full text of that bill, see for yourself) taking us to “socialism” are patently absurd! I’m like “really? The first thing communists do when they take over a country is enact tepid, insurer-friendly reforms that set up a free market exchange so more people can buy insurance plans? Seriously?” A volcano of right-wing rage exploded, including dozens of death threats and some vandalism across the country. How can anyone take the Tea Partiers and Glenn Beck seriously that health care reform is anything but weak-kneed incrementalism?

The Tea Party is more disconnected from reality than any political movement I’ve ever seen, and yet, they seem to be the only major grassroots force out there and their impact is unavoidable. They’re protesting more private insurance as socialism, railing against the lowest income taxes since the 1920s as communist tyranny (simultaneously, the largely graying group opposes changes in entitlements–“get the government out of my Medicare”) and now that they’re doing the one thing that Republican politicians really care about, picking off incumbents, you’re going to see the GOP tilt even more toward the radical fringe (a terrifying prospect).

Real sign, real Tea Partiers. Medicare is a government-run program.

Since the Tea Party guys’ claims have little relationship to reality, and none of them took to the streets when George W. Bush took us from record surpluses to record deficits, centralized power and forever gutted the Bill of Rights in the name of the War on Terra, the Tea Party has to be about something else. You never see the huge, angry backlash and anti-government “patriots” in funny hats and militia terrorists like McVeigh come out of the woodwork when THEIR party is in power! I’m guessing the root of the dispute here is the right-wing’s belief that government shouldn’t have the right to interfere in the market AT ALL, and add in some good ol’ American racial panic when the multicultural Democratic party took over from the virtually whites-only Republicans. Expect another McVeigh-style attack before Obama leaves office (there have already been several shooting rampages, including one targeting religious liberals at a Unitarian church, one targeting policemen for “gonna take our guns,” and one by a long-time rightist fringer targeting Jews at the National Holocaust Museum in DC).

All that furor against the health care reform bill, while, of course, from the disability rights perspective, Obama’s reforms don’t go nearly far enough, because they only make meaningful changes in private insurance, not Medicaid and Medicare, which most of us with disabilities rely on for our care.

Medicaid and Medicare are BADLY broken and rapidly going bankrupt, but aside from expanding eligibility so that more people will be crowding already scant Medicaid resources, nearly NO changes are being made there. The home care reforms I’ve devoted a decade to are not in the bill; America’s long-term care programs remain frozen in 1965, with government continually making expensive, antiquated segregation in nursing homes THE ONLY OPTION for the disabled, including children and young adults. The horribly dysfunctional patchwork of Medicaid waivers that I rail against? Despite years of demands for change from many quarters, including the National Governors Association, those injustices will remain firmly intact, untouched by “comprehensive health care reform.” People like me will continue struggling to wring bad care from what’s left of Medicare and Medicaid; our lot will not improve at all after “Health Care Reform” takes effect. I am fighting this battle every day, and the problems with hospitals closing due to inadequate payments from Medicaid, not being able to find doctors who still take Medicaid patients, and more, just continue to escalate for me.
Meanwhile, the insular Washington leadership is curiously detached and unaware of what’s happening to their own Medicaid and Medicare programs right under their noses. President Obama made me sick when, during the health care reform “summit,” Congressman Peter Roskam (R – Illinois’ 6th district) asked him, “how can we expand Medicaid when in some counties, NO doctors that take Medicaid are left standing?” and the gist of Obama’s response was “my word, what is this that you speak of my good fellow? if this is so, we can look at raising reimbursement rates!” Everyone knows that they’ll never hike Medicaid funding, and that’s why so many in Congress sought special provisions in the bill (e.g. “The Cornhusker Kickback”) for the feds to cover their states’ new unfunded mandates to expand eligibility to millions of additional people. These expansions are not going to go well, particularly in poorer states, especially since the “kickbacks” to soften the fiscal blow were all removed from the bill with reconciliation.

The failure to even attempt changing the glaring problems with Medicaid and Medicare has left me more jaded and frustrated than ever, to the point [b]I can no longer call myself a Democrat[/b]. Especially since I know that Congress exhausted itself scraping through this tinkering with private insurance, and most likely won’t have the political will or sense of urgency to revisit health care issues for another 10, 20 years. I hate being stuck with our dysfunctional Medicaid system but that’s what people with disabilities are, stuck.

While some pundits hailed the passage of health care as a colossal foreign policy victory, proving America can tackle huge issues, marking our “comeback” as problem-solver on the world stage, I see the opposite. I see a government that lacks the dynamic, bold decision-making capability that these ultra-competitive times demand, a Congress that always cops out or kicks the can down the road in the face of huge problems. I see an America so paralyzed by corruption and red tape that we’ll never catch up with competitors (people in India have already stuck a fork in the U.S., considering the Chinese their only real rival for economic dominance at this point).
Referring to China, I’ve often heard President Obama use the rallying cry, “why can’t we be the world leader in technology again?! Why can’t we have the fastest trains in the world?” Well Mr. President, I would answer him, we will never build trains and train tracks faster than China, because we have so much “environmental impact study” and “archeological impact study” red tape, followed by years of hearing lawsuits from anyone who doesn’t like the project, that it takes an average of 10 years to get any major transportation project off the ground, much less completed. China, meanwhile, simply makes a decision on future train projects, then enforces it by any means necessary. How can we compete with that given our bureaucracy?

While those panicked about executive power right now can take a sigh of relief, because presently it seems Obama can’t even take a $#!T without 60 votes from the Senate, I worry that, before long, fierce foreign competition, falling standards of living, plus a completely paralyzed Congress will lead the American people to demand a dictatorship. Another sudden economic crash, or, G-d forbid, successful terrorist attacks (by Islamist nutbags or another McVeigh) and I fear that the Republic will gasp its last gasp.

The only real solutions are solutions as big as the problems, pushed through by reform groups that aren’t just as dysfunctional as the institutions they’re fighting.

Big Solution #1: Ban campaign contributions (bribing) to public officials, as this has limited access to the halls of power ONLY to moneyed interests, as well as fostering a culture where those who spend more time working for the people than working on fundraising are immediately replaced by candidates with backing from deep-pockets, leaving only self-interested scoundrels remaining. Free speech must be immutable, overturn all McCain-Feingold restrictions on when and where and how candidates can advertise and get their message out, independent expenditures by corporations, unions, advocacy groups and private citizens are unfettered, you can say whatever you want, whenever you want with your free speech, because that’s what the 1st Amendment guarantees–you’re just not allowed to bribe public officials with campaign contributions and rig the system. Campaigns will be publicly financed like in Canada, the UK, and most of Europe. Speech is speech. MONEY IS NOT SPEECH!

Big Solution #2: Breaking the Duopoly is crucial, but WILL NOT happen without a change in the Constitution to allow Proportional Representation via STV (“Instant Runoff Voting,” AKA Single Transferable Vote, as is done in Australia, New Zealand, Republic of Ireland) to bring more parties into Congress. Allowing more parties will enable more principled views to be expressed (because, for example, if you want less intrusive government and less taxation, you won’t have to vote Republican for the tax cuts and get warrantless surveillance, anti-gay crap and anti-immigration laws too as part of the package, instead, you can vote for a party that closely matches your views). More parties also mean regional parties representing genuine regional people’s interests get into the mix. And parties would have to work together to coalesce into viable majority coalitions, and would have to curb the extremist nonsense to keep their coalitions together. Overall, Proportional Representation allows for a much, much healthier democracy, whereas currently we have the opposite of healthy democracy, the Duopoly nearly always wins 100% control of the House and Senate with the support of as little as 20-25% of eligible voters, at the cost of all other parties and their viewpoints.

Big Solution #3: This is my most radical view, but failing Solution #2, maybe we could be far more functional as a people and be much better represented, plus have no more imperialist ventures sapping our wealth, if we were to make a new version of the old Articles of Confederation for the new Information Age that separates the country into 6 or so federated regional powers (see: superstates) to avert any FURTHER deadlock, dysfunction, or civil war (each new state under parts of the current Constitution they elect to have, but empowered to each craft very different rules, based on their shared culture, for how society should work). I’m talking about ending the United States as we know it, replacing it with a federation of nearly autonomous federated republics named “the United Federation of America” (UFA! UFA! UFA!) Each federated republic would choose their own military spending and so on. Think of The Federation (United Federation of Planets) in Star Trek! That’s the type of idea I’m batting around here.

Click to enlarge the map!! In this vision of the future, South Carolina even secedes from the Southern Republic, because, hey, they've wanted to secede since birth.

I’m going even farther than “states’ rights.” I’m altering how the country operates–root and stem overhaul–by almost completely eliminating federal centralization as we know it. Why go this far? Because the paralysis of government has become so bad over the past 30 years that we have to consider crazy, radical ideas we would have shunned in disgust before.
Southern culture should never block Northeasterners’ ambitions for reform in New York where I live now, and visa versa. I moved to NY in large part to escape Alabama’s far-right public policy that was blocking my advancement, but while it’s better here, those policies (tax cuts causing huge deficits, social service cuts, the corporatist approach that keeps the institutional bias in Medicaid alive) FOLLOWED ME to New York because they’re federal policies too. And I believe the policies that affect me would be very different if only a Northeastern bloc could decide their own policies, vs. a national consensus accommodating Southern, Western, everyone’s views being forced on the Northeastern states. National compromises should no more be forced on the Northeastern states than on the Southern states (with some exceptions: states can’t disregard the certain parts of the current Constitution, like reinstating slavery or segregation).

This won’t happen any time soon (there is no public support for it) but maybe we’d all be better off if it did…

I just know that the only real solutions here are solutions as big as the problems. Without trying at least one of these big solutions, get ready to shout “HAIL CAESAR” and go full Banana Republic, while China becomes undisputed world hegemon.

Nick

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