Labeling things can be useful, like 
and 
.
But sometimes it can go awry, like 
.
Category: My Life
Please Stand By
Posted by – September 18, 2009
Image of Nick sleeping in his new room, shared with permission
On September 10, 2009, Nick Dupree was able to leave the rehab hospital in New York City where he had been living for approx. 378 days after moving from Mobile Alabama (well after his previous crusade), while waiting to get services and supports established to live in the community.
It’s a wait that’s shorter than many others, but longer than he’d expected or hoped would be the case. Luckily he is now home, and working on next steps, next battles to be fought.
To all those listening, supporting, and watching along the way, he gives thanks. He’ll continue to write and fight about things that are just and unjust as he adjusts to a new standard of living.
After he catches up on some sleep.
A Year In An Institution
Posted by – August 29, 2009
How many months have I been institutionalized?
August 28 marked a full year I’ve been in a NYC rehab hospital. It was a bittersweet anniversary: sweet because it’s one year since I succeeded in changing my life and moving close to my girl, and bitter because of the myriad of professionals that have failed to coordinate the home services required for me to transition to our apartment, confining me to the institution for over a year.
Hopefully I won’t make it past 13 months of institutionalization.
Nick
Ninth “Nick’s Crusade” Video Blog: Too Many Setbacks To Count
Posted by – June 16, 2009
The Ninth “Nick’s Crusade” Video Blog
Too Many Setbacks To Count
Videographer: Alejandra Ospina
Writer/Director/Editor: Nick Dupree
Music by The Eagles
Footage of The Count from this YouTube video
Finished video made with Corel VideoStudio by Nick Dupree
Full transcript of the video, with links and footnotes:
This is Nick Dupree for the Nick’s Crusade Blog. I’ve now been in the institution for over 8 months now. I came here because there’s a lot more services, a lot more programs here, and a lot more flexibility and opportunities for people with disabilities. But the problem is, we’ve found that even though there are more programs here, bureaucracy makes it hard to get to them. We’ve had so many setbacks that it would take The Count to count them.
“I am The Count. Do you know why they call me the Count? Because I love to count things.” [maniacal laughter] [The Count counts]
First of all, the hospital is not familiar with discharging ventilator patients, because if you’re on a ventilator, this place is a lot like the Hotel California – you check in and you never leave…
“Mirrors on the ceiling,
The pink champagne on ice
She said ‘we are all just prisoners here, of our own device’
In the master’s chambers,
They gathered for the feast
The stab it with their steely knives,
But they just can’t kill the beast
Last thing I remember, I was
Running for the door
I had to find the passage back
To the place I was before
‘relax,’ said the night man,
We are programmed to receive.
You can checkout any time you like,
But you can never leave!”
[guitar solo]
So, because they’re not familiar with the discharge process, it’s been hard for them here at the hospital to get together the paperwork so I can get nursing and go home and have home nursing to support me at home. So what’s happened is, they do it wrong, the Dept. of Health in Albany sends it back and says, no do it again, and then they send it again, and then they say, “no, something’s missing, you need to train the caregiver and document it again, you need to send the documents from the home visit…” so we’ve experienced setback after setback, and it’s costing the government over $1000 a day, but that doesn’t seem to motivate them to expedite this. Hey, it’s not their money, it’s yours!
When people with disabilities are not as able to advocate for themselves or be persistent, they end up stuck for years and years and years unnecessarily institutionalized and watching the world and the people around them enjoying life while they’re stuck in an nursing home. So we’ve had setback after setback, and this week, after we finally got all the paperwork figured out, the nursing agency flaked out on us, so now we have to get another nursing agency. And it’s setback after setback, enough setbacks that The Count would love to count them.
[maniacal laughter] [The Count counts] [maniacal laughter]
They Tried To Kill My Brother. Insurance Companies Will Always Put Profits Before Human Life
Posted by – May 18, 2009
So this is basically how I feel about the insurance industry.
In this scene in The Princess Bride, the legendary phrase is uttered "My name is Inigo Montoya. You killed my father. Prepare to die."
“…You tried to kill my brother. Prepare to die.”
Years ago, an insurance company did indeed try to kill my younger brother Jamie.
The story is basically this: my brother was born with the same disease I have. As soon as he was born, mom signed him up to the company insurance plan.
Then when Jamie got sick, very sick, the company (Connecticut General / CIGNA) refused to pay, saying he was not signed up with them. When pressed for why Jamie was listed in their computer, they suggested mom must have illegally trespassed and entered him in there—absurd–and they had no evidence at all.
They wanted to unplug hospital care for baby Jamie.
So we took them to court to enforce the contract (under ERISA, whether someone is enrolled or not is one of the few things the government allows you to sue their insurance buddies over; you can’t sue over a denied claim). Essentially, Connecticut General / CIGNA signed a contract, then wanted to weasel out when they realized it may cause them losses. Money mattered more to them than a beautiful baby. This was in the mid-1980s, at the height of Reaganism and Gordon Gecko-style greed.
We won. As you can see from the above photograph, Jamie is still alive, despite the company’s years of fighting to end his medical care.
The “Jackpot justice” meme is greatly exaggerated. We came out with a net monetary loss, as my family got buried in legal fees for years.
This lengthy battle was really traumatic for my family. As a result, from a young age, I’ve distrusted corporations big-time. They will always put profits ahead of human lives (they have a responsibility to their shareholders to do so) whether it’s dumping pollution, letting unclean peanut plants fester in order to save money, or denying a liver transplant and killing a girl to save money. The bottom line is the bottom line.
Several months ago, I overheard two doctors here at the hospital talking about a patient who recently had valve replacement surgery, and against the doctors’ strenuous objections, his HMO put him (a new cardiac rehab patient!) in the C building (nursing home) where they don’t even have oxygen, because it was the cheapest available option. Of course, his death would be the ultimate cost-saver.
A few years back, my mom’s spine worsened to the point that she required surgery and can no longer sit in chairs for long or walk for extended periods. Of course, the disability insurance she had paid into for decades denied she was disabled, and cut her off. You pay into insurance, but the companies all have a legal responsibility to their shareholders to limit outlays (i.e. shaft you) and maximize return on investment. Mom eventually got a lawyer and challenged the decision, but after legal costs, she got much less than if the company had simply honored its original agreement.
I cringe as during the current health care debate, so many politicians get up and defend this awful, immoral system as their sacred cow. I see nothing worth saving.
Nick
DolphinSafe
Posted by – May 3, 2009
Nurse: did Alejandra give you this?
Me: no, I gave it to Alejandra.
psychedelic dolphin
Nurse: *props dolphin on my chest* this is Alejandra watching over you.
And that’s how I stayed safe Saturday night and slept. That’s my dolphinsafe.
Nick
First “Nick’s Crusade” Video Blog: Day 236 in Hospital
Posted by – April 21, 2009
Nick’s Crusade Blog – April 21, 2009 from Alejandra Ospina on Vimeo
Transcription (as captioned):
Hello, and welcome to Nick’s Crusade blog. This is a video blog of day 236 here in the hospital. I’m here in the hospital because I’m waiting for community services, and the [Medicaid] waiver that I’m on just seems to add another layer of complexity and bureaucracy, and makes things take longer…
And it’s very frustrating to be stuck in a hospital when the only reason is, you just need services in the community. That’s why it’s so important that we pass the Community Choice Act as soon as possible.
I hope that soon I’ll get out in the community, I’ll get into my apartment with my partner, and that we can continue to advocate for the CCA, and for housing. There are so many people here that don’t need to be here, that are only here because they don’t have housing.
My voice is a little rough with a new trach that I got in August, here in this hospital, but I hope that soon, my normal voice, (which is higher pitched, and a little Southern) will be back.
Keep reading the blog for more updates.
Thank you, and I love you all.
Nick’s Crusade
This video is also on YouTube: youtube.com/watch?v=p2SUnllCSEk
“That’s Not My Job” (Angry Rant)
Posted by – March 24, 2009
For people with severe disabilities like me, you’re paradoxically only as independent (defined here as self-directing, in control of your own daily existence) as the people you’re depending on enable you to be. As I wrote in my last post, if your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference. If you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back. This is why being in the hospital and repeatedly running head-first into “that’s not my job” can have such a tremendous impact. It really is one of the worst things ever about hospitalization.
“That’s not my job.” For me, these are four of the most hated words in the English language. But hospitals, whether here in New York City or back in Alabama, seem to encourage them with their strict, stifling policies.
In the home, I had one nurse at a time, and she’d do everything I needed. Simple. I got used to that. Here, even charge nurse RNs aren’t allowed to change the humidifier water bag, even though it’s essentially identical to the IV bags they could hang in their sleep, because anything involving ventilation is the purview of Respiratory. And since there are only two respiratory therapists for the North Campus, your lungs may dry out and form tumbleweeds before they get to it. It’s all fun and games until a tumbleweed blocks someone’s airway.
Nurses don’t (usually) wash patients. You’re dirty? “You’ll have to wait until the aides are free.” “Your ass will be washed in the order it was received. “
I’m allowed to eat lunch in my room, but anyone who needs assistance to eat (me) can’t eat in the cafeteria; it’s banned. Because “what if something happens?”
You need a doctor’s order just to drink gingerale.
The aides can’t mouth suction (the simplest form of suctioning). They’ll go try to get a nurse while you choke.
The staff can trim your fingernails, but not your toenails. Only the official hospital podiatrist can do that.
They had allowed “med-surg technicians” (MSTs) to suction patients, change dressings and do tube feedings in addition to aide tasks. This worked well, with no problems, for over a decade. But since January, the government has declared only nurses are allowed to do those things, which has meant less care for patients (hello, there’s a nursing shortage) and deeply exacerbated the madness over the division of labor, leading us straight to reductio ad absurdum. The outcome (two grown women standing over me as I struggle, saying they can’t mouth suction and will have to get a nurse) is absurd, therefore the policy causing the outcome must be fundamentally absurd. My girlfriend (who uses a powerchair) can do it for them, however, while they stand helplessly, paralyzed by their own rules and regulations (and once again, we’ve answered the “who’s more disabled?” question from my last post). This is why I say I’ve not yet moved to New York City, I’ve moved to an alternate dimension that’s loosely connected to New York City on the outside.
Art by plognark.com
The motive for all this, ultimately, is LIABILITY. They’re practicing “defensive medicine.” If something happens, they can say, “respiratory tasks are only done by a certified respiratory therapist” or “only trained nurses are allowed to do X, Y and Z.” But to accomplish this, they’ve created a tangled division of labor that stresses patients (“wait for a nurse” in an emergency probably creates more liability, not less). There are so many ways they could make it better for patients, like letting nurses do routine respiratory things, freeing up the RTs for when they are really needed. And for heaven’s sake, let the MSTs do what they have successfully done for years, because there really aren’t enough nurses to do it alone.
It’s definitely discouraging how far immorality can go in the name of “policy” and “just following orders.” The staff here are in an alternate dimension where it actually makes sense to let a patient suffer for “the letter of the law.” Things that make no sense are blindly accepted. Lewis Carroll-esque absurdity is unquestioned normalcy here. And you’ll never convince them that they’re in a bizarre alternate reality. New staff come in, and just accept that because it’s policy, it obviously must be in the best interests of patient safety.
I’ve suffered a lot in the name of “patient safety,” and yeah, sometimes I get angry. There’s got to be a better way.
Nick
Lucky Unit 13 (Long Essay on Institutional Living)
Posted by – March 3, 2009
Because Medicaid makes getting on home care waivers ridiculously complex and difficult, whereas institutionalization is easily funded, I ended up here, at a city rehab hospital while I wait for home care to be set up for me in Manhattan. This is my waiting period.
Institutionalization, the most costly, elaborate and inconvenient option, is the easiest to get (in Medicaid law) because the 1965 Medicaid statute hasn’t been updated since technology advanced to allow severely disabled people to live at home. The best, newer services (home care) are a long road to get to, whereas they’ll happily give you an express ticket to the most difficult, costliest, dinosaur services (institutionalization). THE SYSTEM IS BACKWARDS, in an almost Lewis Carroll kind of way. I’m wondering why “fiscal conservatives” would rather keep me in a $1000/day hospital instead of home care for half that.
So for now, I’m living in what I’ll call the “Alcatraz Institute for the Permanently Crippled,” in unit A13, until I get home care.
Ah, lucky unit 13, an alternate world within this alternate island universe.
By accident, I ended up at the North campus. The South campus, which has a long history, was at the forefront of the advent of mechanical ventilation during the polio epidemic (picture wards filled with iron lungs) and then the invention of the ventilator. Dr. Alba Dumbledore saw it all happen. She’s been at the South campus, which probably has 200 vent patients now, for over 50 years. She was on first name basis with the guys who invented the LP vents and PLVs, some of the first home ventilators, and she’s very supportive of people on vents living independently at home. And I have never met a doctor so knowledgeable about the ins-and-outs of daily ventilator use, or as flexible to make the patient comfortable, as her. “Sure, I had one guy with a tidal volume of 2000 so he could fill his leak and talk easily,” she said. Unfortunately, I’ve only met her once, my first week here.
The South campus had no vacancies, and, at the last minute, they discovered the alarm system in their “overflow rehab unit” was broken. So I was admitted to the North campus, two miles from Dr. Dumbledore and the staff that trained under her.
The North campus is more of a general medical-surgical hospital, with over half of the units alloted for their nursing home, but there is also one ventilator unit (with roughly 10 vent patients, only two of which are non-comatose and talking) and adjacent to that, the rehab unit (A13) where I live in the closest room to the nurses’ station. When lying on my side, I can look out my door and see the staff of both A13 and A14 at the nurses’ station.
I was put in a rehab unit, not because of my medical condition, which is typically considered by them to be beyond repair, but because of my goals (get as much rehabilitation as possible, and then transition to the community). All the other ventilator patients in the North campus are cared for by the Department of Medicine, not the Department of Rehabilitation.
But they’ve not done much rehabilitation with me here. Coming in, I was quietly hoping they’d be able to improve my condition (at least slightly) with all the state-of-the-art ventilators, lasers and nano-tech they obviously must have in the wealthiest city in America, but … not so much. I’ve not seen any nano-tech or lasers, but I have become acquainted with the next generation of ventilators. The respiratory therapists don’t have to hunker down over clipboards and write down all the vent settings anymore, they just wave their Palm Pilot-looking handheld computers near the vent’s on-board infrared sensor, and the vent sends all the settings information to them. In-line PEEP valves are now obsolete, as the vent’s computer now does that automatically. But in the case of the portable vent (the LTV) that they have on my wheelchair, newer is not always better. The turbine motor on the damn thing screams like a banshee trying to deliver the high volume (900+) I need, and the nurses actually mistake that high-pitched squeal for an alarm.
Why are they not aggressive with the rehab of Nick? Because A13’s attending physician isn’t that familiar with what can be done for vent patients, and is naturally tentative and cautious. “I wouldn’t want to hurt Nick.” When problems have come up she’s learned a lot from the advice of other doctors (and me) and now has built up some Nick-expertise. Also, she’s sort of adopted me, and her over-protective nature has probably saved me from being reflexively herded into the nursing home, so I wouldn’t want to ship out to another hospital, and very possibly land with a doctor who genuinely doesn’t care.
In truth, this is probably the best of the city-run hospitals. The worst are like this. Here, a patient would almost never get abused or neglected; the charge nurses or a doctor would eat the culprits for breakfast. And, interestingly, the three shifts’ mild antagonism and urge to discredit each other for self-aggrandizement (“we’re the only ones that do anything!”) sort of acts like America’s three branches of government should, checks and balances against each other. They can’t screw up too badly, or the other shifts will make hay of it. “I have to bathe you now, or Tour Two will talk again.”
“It’s Not You, It’s Me”
Admittedly, I like most of the staff and have become a staff favorite. Once, they brought me up to a nurse’s free luncheon and fed me goodies, despite a quizzical nursing director (“remember to take him back to the unit.”) I am one of the more polite patients here and that goes a long way (a surprising amount of patients are bitter, and take out their frustrations over their newfound disabilities on the staff). Also, I have to respect how hard most of the staff here work; on their feet for the entire shift (minus a one-hour break) juggling around 18 high-need patients.
Looking down the unit from my room
The problem is that the institutional structure of the environment, the arbitrary and very strict policies they’re forced to follow, don’t jive with my free-spirited personality (to put it mildly). It’s not you, it’s me.
What I hate the most is when they force my partner out of the hospital if she lingers after Professor Umbridge announces sweetly, “VISITING HOURS ARE NOW OOOOVER!!” over the Soviet loudspeaker that no one can ever turn off (it reminds me too much of this link I added to the Spring Hill College Wikipedia page). And they use their security guards to enforce visiting hours if necessary. More than once she’s either been escorted out by security, or just dodged the guards. Why is a small girl in a powerchair such a threat? It seems so unnecessary and inhumane to force us apart when we need to be around each other.
Forced separation from my other half is the part I hate most about this place, along with their strict safety policies. Like whenever they have to re-insert my g-tube, they force me to undergo a painful stomach x-ray (or they won’t clear the nurses to continue tube feedings) just to protect against a one in a million chance freak tube accident that there’s no medical evidence to suggest will occur. I’ve lost count of the unnecessary stuff I’ve undergone because “we can’t override policy.” There are myriad examples of “practicing defensive medicine” (CYA) in every hospital nowadays, this one is not unique.
Home care, with one-on-one staff, is simply better than institutional care, where staff may not be available to even help you sip a drink at night, and you have to wait for them to finish with other patients, whose needs may be more critical than yours. “YOUR ASS WILL BE WASHED IN THE ORDER IT WAS RECEIVED.”
More importantly, it’s ME. I’m just not suited to institutional living; I want to cross uncrossed boundaries and experience new things. On one of my birthdays (my 20th?) we went to a Mobile Mysticks hockey game. After the game concluded, I drove my chair out onto the ice (where other spectators were) without permission, speeding away from Mom, nurses, who all yelled for me to stop. The chair had never been on ice before (though the knobby tires I had were well suited for it) and I just wanted to experience something different, be different, not be like anyone else Once my family saw it was safe out there, my brother drove out too.
A nice cage is still a cage.
People will often yell “STOP!” before you demonstrate the ice is safe. In my life, I hope to show many people.
Nick
Rising From The Ashes
Posted by – March 3, 2009
I used to be a big activist.
I made a national splash fighting Alabama Medicaid’s arbitrary cut off at age 21 (NPR story here) in a campaign dubbed “Nick’s Crusade.” It was years of legislative work, followed by half a year of lawsuit work, and a sustained internet and media campaign throughout. I saved myself, my brother and several others from having life-supporting services terminated. After I “won,” I spoke at conferences throughout the country about advocacy (like the keynote at the Chicago TASH conference, and, in one of my proudest moments, delivered a speech on civil rights in Martin Luther King’s old church).
Everyone thought “this is a talented kid that’s really going somewhere.” But I didn’t have enough help to go far.
The situation wasn’t a good one, and with the support of my partner, and an internet fundraiser coordinated by the Ophoenix Public Benefit Corp. in San Carlos, CA, I was able to fly out of Alabama on August 28, 2008, and am now living at a city rehab hospital in New York City until I can get home care in place.
I’m rising from the ashes, yet again. I’m starting over in New York. This blog will chronicle my various adventures and insights.
Welcome!
Nick’s Crusade has moved to nickscrusade.org!
If you like my blog and would like to see every new post, a great web tool for following blogs is http://www.feedmyinbox.com/ You simply insert the URL of the blog ( in this case, http://www.nickscrusade.org/ ) and it automatically emails you the new blog posts.
Thank you!
My first lengthy post is Lucky Unit 13 (Long Essay on Institutional Living). Check it out.
Nick
