Category: Health care and Disability Rights

1986 Mobile Press-Register Article: on specialness and surviving

This 1986 Press-Register article about me, Jamie and Mom, especially Jamie, surviving the rare disease, was digitized by my Aunt Nancy in Virginia. Thank you.

Mom gave me permission to post this here. It’s so old the newspaper was still called the PRESS-REGISTER!

Back then the medical knowledge and approach to mitochondrial myopathies was much broader/more vague to say the least, and our carnitine deficiencies resist supplementation. We are certainly even rarier than 28 in the world. Today’s definition of mitochondrial myopathy largely excludes us, and metabolic medicine has de-listed carnitine deficiency as a distinct disease. It is now considered a symptom.

It’s my hope the article could help confirm my story about our unusual diagnosis, exceptionally uncommon for the time to put it mildly. And that the article could also somehow help other weird metabolic children….

Transcription of the article’s text below

Thanks to Alejandra far copying it down.






Her sons are ‘special’

Photo caption: Ruth Dupree and her sons Jamie and Nick.

Press-Register Reporter

Meet two special boys, Nick, 4, and Jamie Dupree, 2 1/2. They have a rare muscle disease. It leaves them too weak to walk and in Jamie’s case, sometimes too weak to breathe.

“I think they are real special,” said their mom, Ruth Belasco Dupree. “A priest said to me, you have to find things to be thankful for. Everyone thinks their kids are special. But I’m absolutely convinced mine are.”

The Dupree brothers have a carnitine deficiency, which leaves them with little muscle control.

Mrs. Dupree noticed Nick at five months old wasn’t attempting to push up on his hands or crawl. After taking him to a series of doctors, one doctor finally acknowledged that something was not right with eight-month old Nick. When Mrs. Dupree and her husband, Michael, moved here from Tallahassee, Fla., she was pregnant again.

“My OB wanted to be more definite about what Nick had,” said the art professor at Spring Hill College. “Nick was then diagnosed as having mitochondrial , a problem in the muscle cells. And that’s true. But there was no known pattern of heredity for it. We thought we had the green light,” as far as their second baby being free of the disease.

But a visiting professor from the University of Iowa, Dr. Hans Zellweger, told them the hard facts. He diagnosed Nick as having a carnitine deficiency and said there was a one in four chance that two-week old Jamie would also have it.

Looking at pictures of her sons, Nick, the active preschooler who doesn’t consider himself handicapped, and Jamie, with his loving smile and shock of red hair, she sighed. “Even if we had a crystal ball and had known,” about the disease, “we probably would have had Jamie.”

A month or so later, it was clear Jamie had the disease. And Zellweger told them that there were only 28 documented cases worldwide of carnitine deficiency.

Nick has gotten better. He can’t walk but he runs nonstop around the house on his scooter. He has a light, compact wheelchair that he uses at the school he attends for gifted children. He goes to gym and dancing classes.

“Nick doesn’t in any way regard himself as handicapped,” she said. “Nick says Jamie’s handicapped. I asked him why we had a handicapped parking sticker on our car. He said so we can park in places and get Jamie’s wheelchair out.

“We’ve gotten some braces for him and we hope they will support him and help him move his legs. I have every confidence that he will walk. He thinks he will.”

Jamie is a miracle. Almost two years ago he got pneumonia and was hospitalized. He was breathing with the help of the ventilator. “The pneumonia made him weaker and weaker. At one point, all he could move was his fingers. When they’d draw blood, he wouldn’t cry. It was too much to cry. He was so weak he couldn’t even smile. There was not a lot of hope for him.

“The ventilator we had went through his nose. Our pediatrician said we should have a tracheotomy done on him. The other case we dug up that was like him, the child died after the tracheotomy.

“Dr. Zellweger told us not to bother because Jamie would not be around long. We thanked him for his directness. And we decided to have it done. We decided it was more important to get him home.”

Mrs. Dupree said a nurse called Elaine Roussos, founder of Helping Hands for the Children, to talk to her. “She gave me a pep talk that I will remember forever. She was so kind and encouraging, she reversed my feeling from utter terror to exhilaration.

After the surgery, Jamie began to pick up again, she said. “In part he was being ventilated more efficiently. And in part, we’d gotten so happy about him coming home, it spilled over onto him.”

In April 1985, Jamie came home. He is still hooked up to a ventilator to help him breathe. He is fed through a tube. He can chew and has a good swallow, but he is still afraid to eat on his own. (He likes to eat Cheetos.) “It scares him because of his breathing problem,” his mother said. “He went for a long period of time when he couldn’t eat.”

“Jamie is not supposed to be able to talk, but he does. He can’t walk. He can’t roll over, but we can cheerlead him into it. We have minor landmarks. He has to be sort of propped up or lying on one side. But he’s gotten to the point that on a good day he can sit up by himself.”

“I think he’s making incredible progress. It’s slow compared to other children, but not for Jamie, who wasn’t supposed to make it out of the hospital.”

The ADAPT Ice Bucket Challenge: An #IceBucketChallenge for Community Inclusion! /memeHijack

My Mom Taught Me – Subvert The Dominant Paradigm

remember to turn the subtitles on.


When Alejandra mentioned to me that even Raul, like me one of two brothers with an uber rare muscle mitochondrial thing, on a ventilator full time and an awesome advocate too, went ahead with the Ice Bucket Challenge, I replied “if only ADAPT had a meme like that!” So together, Alejandra and I brainstormed a new, ADAPTed version of the challenge, and here it is.

I offer a different focus for the ice bucketed masses on social media, and try to give voice to the views of many like me in disability rights circles: we don’t want “eradicating neuromuscular diseases” to be the only agenda… quality of life is the key, and every day we’re fighting uphill against systems that hold us back from living the best lives we can.

Yes, awareness is great. Yes, medical research is super important, for quality of life too. Politicians who ham it up with an ice bucket after voting to sequester cut the NIH budget so severely that ALS research and all NIH programs had to regroup even more barebones than before shouldn’t be re-elected!  Democrats voted for that sequester en masse while the Republicans held out for even more harsh cuts; nominating the lot of ’em for a bucket o’ scorpions challenge would be more like it.
Neuromuscular research funding should be auto-approved and Raytheon, Northrupp Grummond, KBR and their ilk should have to pass the hat on social media.

Medicaid long-term care still mandates antiquated nursing home care but in-home supports are “optional,” meaning most states offer only spotty or barely-existing home care, and even that is increasingly threatened.  Private “major medical” health insurance like Blue Cross phased out coverage of long-term care nationwide in the early ’90s excepting a handful of examples, so unless you’ve purchased a special long-term care plan in your working years to cover full-time care in your senior years, Medicaid is the only place you can turn.  Private long-term care plans aren’t available to ALS diagnosed people, preexisting condition y’know, much less sold for the Nicks and Rauls with inborn genetic muscle diseases.
This means the most severely affected by neuromuscular diseases like ALS, the Americans who need full-time care the most, have only the dilapidated 50 states/different Medicaid programs for the long-term care that is so essential for both survival and a life worth living. RIGHT NOW these vulnerable groups are unable to get the needed services and supports for the quality of life that they deserve, with their loved ones in their homes, and face worse conditions than they should because of our insane political system. That fight is RIGHT NOW, not four, five generations hence like the potential cures we seek.

Standing up for the people in the trenches now is important, awareness of our lives, our struggles, our dignity, is crucial oxygen for us as we face daily battles… Visit to learn more and to donate.


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

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.



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


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“…

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

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).


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

The Coler Chronicles: Collected Bloggings of the Institution Days

Dispatches from Ventboy Alcatraz

From inside the walls of the institution, Coler-Goldwater, I continued to create content, to blog, and we added video blogging from the inside.

I wrote the following blog posts about the institution, where I lived from August 28, 2008 to September 10, 2009:

All nine video blogs can be found here: First Video Blog Series From Inside An Institution

these video diaries/rants are me speaking on camera about the institutional experience and related policies… the commentary on the formative “stakeholder meetings” that shaped the Affordable Care Act is one of my most important videos, I think.

Note: the respect I have for the staff and bond felt with the other patients is very real, and though these diaries vent frustration and the heat felt at the time, their intent is to shed light not heat and to educate about the real world conditions and actual lived experience of disability in public long-term care hospitals.  Please understand that I blame policies not people.   I want to give Love to the human beings within the surreal constructs I’ve described.
In addition, you should know that the unit A13 I describe and the hospital Coler-Goldwater itself no longer exist in the forms I encountered, having closed/dramatically shifted at the end-of-2013 without the best transition plan for the people there…

I collected everything here for convenient access for readers who’d like an intimate look “on the inside.”


Video: “Aging Out” of the health care needed to survive at 21 threatens future of two Florida college students

The 21 cut-off, the policy that I fought hard to change in Alabama with a full campaign that I began two years before the cut-off would hit on my 21st birthday, and now I fight on this blog, is still a threat to many around the country. As people with severe disabilities are saved by technology and are increasingly able to grow up, greater and greater numbers of us will trip over the 21 cliff, “aging out” of the in-home care that we need for the most basic survival and dignity. It is a problem that too many state Medicaids essentially shove the people who need services and supports the most off the cliff as a 21st birthday present, and this continues to cause real harm.
We cannot allow states to undo the incredible progress people have made, with the help of life support technology, surviving to adulthood and thriving, adding our talents and contributions to our families, communities, states, and country. It is not the will of the American people that states pull the rug out from under the most vulnerable just because they’ve turned 21, but too many states have been doing exactly that for far too long; I’m continually haunted that, in Alabama, not all my friends survived it.

This video, featuring Sarah, and Jordan of the 21 disabled campaign, two college students grappling with the consequences or future consequences of the 21 cut-off and other hardships foisted on them by short-sighted Medicaid bureaucrats, will wake you up to the continuing crisis that aging out at 21 is right now, in 2013.

In this video ^ Jordan mentioned her first 21 disabled video: you can see that original 21 disabled video here that went viral and really made a difference, pressing Florida Medicaid into giving Jordan a reprieve until graduation.
I really admire how Jordan, with so little time remaining on the clock—just a few months—when she found out the 21 cut-off existed and found herself barreling toward the 21 cliff, was able to fight back effectively and win. A big part of her success was her savvy with social media, maximizing Facebook, Twitter and WordPress to get her YouTube video in front of 30,000 people in a matter of days. Neither YouTube, Facebook, Twitter or WordPress existed during “Nick’s Crusade” (March 2001-February 2003) but now that these social media tools ARE available, I hope me + the disability community writ large can leverage them effectively enough to make the bulk of internet users aware of the 21 cut-off, and then build the support necessary to end “aging out” of in-home care in all 50 states!

Sarah, who talks about her experiences first in the newest video, has no reprieve from the 21 cut-off on the horizon. She describes a situation of fighting tooth and nail to get services, waiting until age 18 to finally get some desperately needed services and supports so she could live out her college dreams, then upon arrival at the university dorms was told she would have to go home, for the excuse I’ve seen used again and again to oppress and exclude us, “liability reasons.” Sarah didn’t leave and didn’t give up, and that alone shows more fortitude than most could fathom. And now she is looking ahead at the 21 cliff, facing the prospect of the life-sustaining hands-on care that makes college possible for her going away after her 21st birthday.

Such a system as Florida has, that allows you just three years of the care you need to survive—from age 18 to 21—then pulls the rug out from under you mid-semester, is a uniquely cruel system. In fact, there is little else in American life THIS openly cruel in its impact on people with disabilities and their families, and, in my travels, I’ve not seen any other policy that poses as clear a clear and present danger to people with severe disabilities as this 21 cut-off policy does, which is why I’ll never shut up about it. Help me. Don’t let me be the only voice out there on this issue of “aging out” of life-sustaining services and supports! Given the intransigence of Florida Medicaid and the intractable nature of the Florida legislature when it comes to social programs, we will need all hands on deck to gain meaningful change for Sarah!

Awareness of this issue MUST go on the front burner. It is a nationwide problem: Raul Carranza in California, who is on a vent 24/7 like me, was forced out of college at ACLU for his 21st birthday when he no longer qualified as “pediatric” and the state became stingy (go to Raul’s web site for the full story, which is more complex than other cases, but has a very similar root cause).

Let’s do something.

IDEA 1: consider helping me with BLOGSWARM FOR SARAH: End the age 21 cut-off!. If I can get Sarah’s permission, I’d create a hub here on for a mass movement of blogging about preventing the dream-destroying 21 cut-off from harming Sarah and others, with everyone posting on their blogs on the issue, expressing their unique thoughts, views and ideas, and linking back to the central hub, as was done with past ADAPT Blogswarms and Blogging Against Disablism Day (BADD).
Interested bloggers, please contact me via email at nick @ or on Twitter @NickDupree or on Facebook at Nick Dupree

IDEA 2: This goes hand-in-hand with the preceding idea; just MAKE JORDAN AND SARAH’S NEW VIDEO GO VIRAL! Put the video, embedded above, or this post with the video in it in front of as many people as possible; Facebook it, tweet it, re-tweet it, email it, reddit it, SHARE IT far and wide! Whether you blog about the video or not, SPREAD IT!

We live in interesting times. Now more than ever, survivors can get involved online and share their stories with the world. It’s an amazing thing that those of us who breathe and/or move with the help of technology can now use other, Internet-based technologies to participate in the world, make our unheard voices heard, give the megaphone of the blogosphere to the unrepresented, make public the pain and oppression that has always been hidden away… but to really be heard over the social media noise, to really maximize online tools and make a difference, WE NEED YOUR HELP! You, the person reading this right now.

With hope,


How ACA “ObamaCare” Exchanges Work: A Nick Animation

I made the above animated vignette to explain how the health insurance exchanges being established under the Affordable Care Act (ACA), online marketplaces for “shopping” for health insurance, roughly, will work. People will begin signing up for health insurance plans on the exchanges October 1st, and those plans will go into effect Jan 1st, 2014. And any credible fact check will tell you, as this one from the Associated Press does, that the tax credits that fuel the exchanges, that subsidy that will make the now-$20,000-a-year bronze plan cost $5,000 for a family of four in one IRS estimate, will be delivered directly to your insurer. You won’t catch a glance of your tax subsidy.

The insurance companies are raising prices through the roof, not only because they’re required to cover much more in terms of minimum health care services, but because they know the government will pay and pay and pay. Thus, sticker shock will put anything but the new-legal-minimum bronze plans out of reach for the vast majority of participants. Pouring cash by the dump truck onto insurance companies is emblematic of our “only in America” health care non-system, and a primary cause of its deterioration.

The dump truck-full of unimaginable, astronomical sums of money won’t come from the sky like in my cartoon, it will come from the IRS. The IRS will be in charge of doling out the tax subsidies, and extracting the fines from those who don’t comply with the individual mandate to buy health insurance. I gave a thorough overview of the individual mandate and subsidized insurance exchanges recently: What Is ObamaCare? 2013-2014: Overview Part 1.


Public Policy and Activism: The Harm of Denial

The bulk of this post was taken from a piece of my upcoming memoir I’ve left on the cutting room floor.

It’s like 12-step programs say, “the first step to recovery is admitting you have a problem.”

So just getting people to understand that people with disabilities exist and admit that there are multiple, severe problems with the systems we rely on to survive—to the point we cannot survive in too many cases—just getting that understanding is a major hurdle. There’s this widespread false belief that people like me are “taken care of” and don’t need community help and involvement, when we do more than ever! The institutional bias is a huge problem. Austerity is a huge problem. I need people involved, I need volunteers, and the need for assistance and advocacy that I and the disability community as a whole NEED is only increasing as austerity budgets reduce the government support we’re receiving.

We, the grassroots activists, must educate the state governors and Medicaid commissioners who are running the programs and the legislators who are supposed to oversee them as to the real problems; it’s a bizarre psychedelic upside down situation where the insiders have little knowledge of the most egregious unintended consequences their programs create. We have fallen through the looking glass, and the captains don’t notice that their ships have holes in them. The few grassroots activists who see and come to understand how Medicaid programs in their state really work after they’re been through the special interest gauntlet and legislative sausage machine end up feeling like Cassandra, the Greek mythological prophetess who predicted doom and destruction and a Trojan horse was coming, was disbelieved, and was right. It’s hard to be the one person interrupting the party to point out the horrible truths.

The captains insist their hole-y fleet is just fine; “we’re not taking on water, and wouldn’t you be better off thinking positive and being grateful for what we have?” When optimism is preached by “see no evil, hear no evil” wind-up monkey leadership, it can actually be quite harmful. Sometimes politicians and CEOs employ an almost Maoist forced optimism to squelch the legitimate grievances of individuals. In the first few months of my campaign, Nick’s Crusade, the majority of the signs were discouraging. I wasn’t even sure that I could convince people that there was a problem. I kept going because I couldn’t do otherwise.

In this lecture, Barbara Ehrenreich talks about this forced optimism, its use as a tool of social control in authoritarian societies, its destructive consequences.

What Is ObamaCare? 2013-2014: Overview Part 2—Medicaid expansion

An ObamaCare Overview 2013-2014 Part 2: Medicaid Expansion

This is the second part of a two-part blog post: click here for Part 1

In the 2013-2014 period, states must decide whether to opt-in or opt-out of the “Medicaid expansion.”

Though it pains me deeply that the Affordable Care Act doesn’t fix any of the problems within Medicaid, even the most egregious, lethal flaws, I do understand how important the Medicaid expansion is, especially in the Southern states. The Medicaid expansion expands the number of people covered by raising the income threshold for eligibility. That means that families who are severely impoverished, making like $12,000 a year, can now qualify for Medicaid in places they couldn’t previously. like Florida. I know that it is hard to believe, but many states, especially in the Deep South, put their Medicaid eligibility thresholds ridiculously low; in Alabama, for example, you can’t qualify for Medicaid unless you make under $251 a month (or thereabouts, it may have changed slightly since I left the state). That means that Alabama Medicaid excludes the working poor, the bulk of all impoverished Alabamians unless they’re children or too disabled to work at all, leaving an enormous swath of Alabamians uninsured and bankrupting the hospitals who provide a great deal of “indigent care.” In Alabama, several rural hospitals have had to close following Medicaid budget cuts that came down from Montgomery, because their patients are mostly not covered, and they’re very dependent on the Medicaid reimbursements they can get for caring for the few rural people who are covered. A recent study published in the New England Journal of Medicine showed that prior Medicaid expansions led to a fall in mortality rates; in other words, expanding Medicaid saves lives.

Unfortunately, the states who need the Medicaid expansion the most, i.e. Alabama, are the ones refusing the expansion.

Medicaid works through matching funds, or FMAP (Federal Medical Assistance Percentage) that go toward each state’s Medicaid program. The FMAP varies based on the income of the state… here’s a cartoon I made to explain Medicaid funding:

Medicaid expansion explainer
Click to enlarge.

As you can see, the Medicaid expansion increases the number of eligibles, and grants states enhanced FMAP to cover almost all of the costs. But the Administration and Congress have given states enhanced match before, with the “stimulus” bill, the Recovery Act of 2009 (more about this round of enhanced matching). The news media is (per usual) misleading the public. Everywhere I’m seeing print headlines, radio segments and TV talking heads saying, without nuance, that governors opting-in to the Medicaid expansion are “accepting ObamaCare.”

This reddit headline, highlighted on the Brian Lehrer Show recently, is unfortunately typical of the dominant narrative around the Medicaid expansion:
Governor Christie Accepts ObamaCare  - GOP's heads explode

Just because this Medicaid expansion is tucked into an amendment of the Affordable Care Act doesn’t mean you’re “accepting ObamaCare” by participating in it. I agree with Chris Christie on almost nothing, but it is important to be fair to everyone. Christie isn’t flip-flopping on ObamaCare, which I explained in Part 1 is all about subsidized private insurance exchanges, he is participating in Medicaid—a state-federal partnership signed into law alongside Medicare by President Lyndon Johnson in 1965—and he’s taking the enhanced match to pay for almost all the tab new eligibles will incur.

If we’d stop mislabeling governors as “flip-flopping,” maybe more red states would opt-in to the Medicaid expansion; the Southern states need this assistance the most desperately, but are the least likely to take the Administration up on its offer.

Florida Governor Rick Scott (R – Columbia Hospital Corporation) is, so far, the only Southern governor to show any openness to the expansion. Scott’s change of heart, which since he explicitly denounced the Medicaid expansion, was really a flip-flop, is discussed here on PBS. This is one of the least awful talking head segments I have found, though its failure to distinguish Medicaid and ObamaCare clearly enough may further contribute to the confusion:


Previously: What Is ObamaCare? 2013-2014: Overview Part 1 (Insurance Subsidies)

Next: The Changing Use of Medicaid Waivers, For Evil

What Is ObamaCare? 2013-2014: Overview Part 1 (Insurance Subsidies)

An ObamaCare Overview 2013-2014: Part 1

Oh man, I am so frustrated that people misunderstand ObamaCare—the Affordable Care Act (ACA)—and continually frame it as something it’s not. They frame it as some sort of universal health care coverage, or as some vague new program that replaces Medicare and Medicaid, or at least fixes their most egregious problems (Medicaid’s age 21 cut-off, for example). None of the above are true. I’m writing a book, a memoir of my fight against Alabama Medicaid’s age 21 cut off and a book-length exploration of the plight of young vent-dependent people in general, and if you’re wondering how ObamaCare changes things vis a vis Medicaid, it doesn’t. The Affordable Care Act expands Medicaid eligibility, but doesn’t change the underlying rules and regulations, or fill its most egregious gaps. So there’s very little about ObamaCare in my book; it just isn’t all that relevant for those of us with severe disabilities who have to rely on Medicaid and Medicare.

What is ObamaCare?

The public needs to ask this over and over again, until the wrong assumptions dissipate. Congress never debated universal health care coverage. When Congress debated the Affordable Care Act, they were debating a proposal nearly identical to a bill titled the “Health Equity and Access Reform Today Act” (HEART Act) which was introduced by Senate Republicans in 1993 as the conservative alternative to Bill Clinton’s health care legislation (which focused on an employer mandate to provide health insurance). The crux of the conservative proposal was essentially, “we want universal health care too, but through private insurance, and we’ll do that through an individual mandate; every American will have health insurance coverage.” The individual mandate means that the government requires individual citizens to have insurance.

The mandate made its political début in a 1989 Heritage Foundation brief titled “Assuring Affordable Health Care for All Americans,” as a counterpoint to the single-payer system and the employer mandate, which were favored in Democratic circles. In the brief, Stuart Butler, the foundation’s health-care expert, argued, “Many states now require passengers in automobiles to wear seat-belts for their own protection. Many others require anybody driving a car to have liability insurance. But neither the federal government nor any state requires all households to protect themselves from the potentially catastrophic costs of a serious accident or illness. Under the Heritage plan, there would be such a requirement.” The mandate made its first legislative appearance in 1993, in the Health Equity and Access Reform Today Act—the Republicans’ alternative to President Clinton’s health-reform bill—which was sponsored by John Chafee, of Rhode Island, and co-sponsored by eighteen Republicans, including Bob Dole, who was then the Senate Minority Leader.

Source: Why Republicans Oppose the Individual Health-Care Mandate : The New Yorker

By 2009, the debate had turned upside down, with Democrats supporting the Heritage Foundation‘s individual mandate as the core of the proposed Affordable Care Act, and the Republicans unanimously against the individual mandate. Inexplicably, Democrats have moved to the right and embraced the rightist policies of the past—Barack Obama has positioned himself as a George H. W. Bush-type of moderate conservative president, a dramatic break from prior black presidential candidates like Shirley Chisholm and Jesse Jackson—and Republicans have turned against their own policies after supporting them for two decades. It’s bizarro world!

The costs of the Affordable Care Act. almost all of the costs, come from the individual mandate and the associated subsidies. The core of ObamaCare, the nut meat, is the system of subsidized health insurance exchanges. The main idea is that “health insurance is unaffordable and we’ll fix that by adding subsidies that make insurance affordable, and for the poor we will expand Medicaid eligibility, then most everyone will have coverage.” Affordable Care Act proponents called this “achieving universality” by tweaking multiple pieces of the system, like a piecemeal universal health care. This rang hollow even then; it didn’t even sound like the proponents believed their own rhetoric. I didn’t buy the claims that we’d “get to universality” any more than the incredible claims about health care providers voluntarily holding down prices as part of the ObamaCare grand bargain.

The debate in Congress over the Affordable Care Act primarily revolved around the individual mandate, the potential costs and red tape nightmares involved, and, inexplicably, abortion. Though the ACA includes a firewall between its subsidies and abortion, there aren’t any abortion-funding provisions in the bill, and the legislation is not intended to address abortion at all, still, the debate centered on abortion to an unexpected degree, in the House of Representatives especially. President Obama signed Executive Order 13535 to reinforce the Hyde Amendment’s prohibitions on federal funding for abortion as related to the ACA.

During the 2008 Democratic primary, Hillary Clinton was for the individual mandate and Barack Obama was against it. I agreed with that version of Obama. The idea of requiring citizens to buy a defective product (health insurance scams) from select corporations is terrifying. The U.S. Supreme Court was asked to rule on the question of whether the federal government can require buying insurance and fine citizens for not acting, for non-activity. The court gave the individual mandate a thumbs up, as long as the fine is implemented as a tax. I think that this sets a horrible precedent in terms of the fusion of corporation and state. The Obama Administration, and future administrations, will decide which health insurance plans meet Affordable Care Act standards and are allowed into the insurance exchanges, and as we already have seen, for example with ACA requirements being waived for the most powerful companies, how corrupt that process can be.

In 2013-2014 the main provisions of ObamaCare, the subsidized health insurance exchanges—some, like New York’s, will be state-run, but where governors have refused to set up exchanges, for example Alabama, there will be federal-run exchanges—will go into effect, along with the individual mandate. Right now, only two percent of health insurance plans meet the minimum coverage requirements to be sold on the exchanges. We’ll see how things change as the requirements kick in and the exchanges come online (literally, the exchanges will be online marketplaces). Expect to see more than a few kerfuffles over the individual mandate penalty fines, plus some serious sticker shock—the cheapest type of plan under the ACA is a “bronze plan,” and according to an IRS estimate, bronze family plans for 4 and 5 person families are assumed to cost $20,000 a year in 2016—though it seems the exchanges’ subsidies may pay for the bulk of the exorbitant costs. I don’t know that pouring subsidies in won’t just incentivize insurers to keep raising prices. Removing the downward pressure on prices consumers exert when they can’t afford premium hikes, the feds saying “no matter how bad you gouge, we’ll pay it” seems INSANE to me, like something that would only make sense to an industry lobbyist.

Political cartoon by Nick, "Obama's Faustian Bargain"
Political cartoon by Nick, “Obama’s Faustian Bargain”

Massive subsidies that only increase are not a positive, in my view. Neither are subsidies to the health insurance companies amid an abusive dynamic “please stop killing children with preexisting conditions! Here, take $500 billion, just stop hurting us!” a positive; they’re actually the worst possible approach to this problem. And anyone who thinks abusive practices like the cruelty against those of us with preexisting conditions will end, you’re naive; new abuses and new loopholes to get old abuses through will appear on day 1. Awful unintended consequences are already arriving. The entire model desperately needs replacement.

Too often, health insurance is a scam. You pay in enormous sums each month just so the insurance company can deny you care in your hour of need. It’s essentially a very sophisticated, legal way to mug you each month. And when you subsidize something, you get more of it…

What is ObamaCare? it’s predominately a requirement to buy health insurance from select corporations with fines for disobedience, plus enormous subsidies for those selected corporations.

Next, in Part 2: the Supreme Court ruled that the “Medicaid expansion” provisions of the ACA must be voluntary for states. This has meant decision time for all 50 state governors across the country, but opting-in to the Medicaid expansion ISN’T “accepting ObamaCare.”