Tag: institutions

Democrats Ignoring Long-Term Care, Activists Respond. LET MY PEOPLE GO!

Posted by – July 26, 2009

44 years ago, Congress passed several historic amendments to the Social Security Act, the Medicare and Medicaid programs. Back then, there were no home ventilators, there were few medications for managing disease, there were no home Hoyer lifts, and Congress couldn’t imagine the elderly and disabled living at home successfully and independently. The technology and possibilities for independent living have been available for over three decades now, but the law has not changed. The feds only mandate that state Medicaid agencies cover long-term care in nursing homes and other institutions. Basically, Pharaoh will only allow you care in a prison-like setting. People with disabilities are forced every day to leave their taxpaying jobs and families behind to go into these prisons. It’s the only way they can get the care needed to stay alive. “Give up your freedom or give up your life,” is no choice at all.

The Pharaoh is now drafting his plan to reform America’s insane health care system, but has said that long-term care, which Medicaid is the number one provider of, will not be reformed in this package. How can they reform health care without addressing long-term care, one of the biggest expenses straining state budgets and bankrupting American families? It is bizarre that legislators and voters could ever see this as a separate issue, when it is one of the worst examples of how badly the system is broken. Institutions cost the most of any long-term care option, but are enshrined in law as mandatory, while home care services, the least expensive option, are slashed to the bone by states because they are “optional.” States are still forcing people with disabilities into institutions, the most costly option, because of the antiquated and discriminatory institutional bias in federal Medicaid law that both parties continue to choose to ignore.

The Democrats created the institutional bias when they drafted Medicaid law 44 years ago. Now, amidst their push to overhaul the system, they are ignoring calls from activists to rectify this injustice. On Tuesday, ADAPT activists, after months of letters and phone calls did not produce results, visited 25 Democratic offices around the country to demand that meetings be scheduled to hear their concerns, and that the Democrats apologize for 44 years of unjust policies that have stolen billions from taxpayers and stolen millions of productive lives from their communities. Here is a video clip of activists visiting Senator Baucus’ office in Missoula, MT and stating their case. Other activists were camped out at the DNC headquarters in Washington DC, keeping vigil until their demands are finally heard. 44 years is enough of this injustice; it’s time to change.

IT’S TIME.

We all owe ADAPT our support. They are putting themselves on the line, facing arrest, threats, getting carried out of the DNC by police, their accessible portable toilet was confiscated, but they’re still speaking up when no one else will, for those in nursing homes that are not being heard. Pharaoh, LET MY PEOPLE GO!

Go Down Moses – Louis Armstrong

Nick

It's TIME to pass the CCA! on Twitpic

The First Video Blog Series From Inside An Institution In History

Posted by – July 7, 2009

A thank you for watching the video blogs I’ve made, as far as we can tell the first vlogs recorded within the walls of an institution (against hospital policy, obviously).

Ninth “Nick’s Crusade” Video Blog: Too Many Setbacks To Count
My videos keep getting more elaborate. This one, about all the setbacks I’ve had, features The Count from Sesame Street and the song Hotel California.

Though I created this content according to Fair Use, copyrighted things only there to comment on original content, the video was auto-taken down from YouTube. As of July 27th, 2014, it is viewable on superAleja’s Vimeo.

 

Eighth “Nick’s Crusade” Video Blog: Have Humidifier, Will Travel
Yes, you CAN mount a humidifier on a wheelchair, and achieve mobile humidity!

Seventh Vlog: “Fighting For The Community Choice Act” music video/photo mashup!!
My successful attempt to create a viral video promoting The Community Choice Act, featuring music by The BoDeans.

Sixth “Nick’s Crusade” Video Blog: What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced
No matter how much money you pour into these institutions, it’s not going to fix the underlying problem, and that’s segregation.

Fifth “Nick’s Crusade Video” Blog: “A Seat At The Table” Determining Health Reform, Doesn’t Include People With Disabilities
This, the first vlog entirely edited and captioned by me, reports on President Obama’s meetings with health care “stakeholders,” and how these meetings don’t include any people with disabilities or other minorities.

Fourth “Nick’s Crusade” Video Blog: ObamaFail! Administration Refuses To Lead On Disability Desegregation
The Obama Administration flip flops on past promises, and removes the Community Choice Act from WhiteHouse.gov. I respond, angrily!

Third “Nick’s Crusade” Video Blog: Alejandra Guest Vlog On Good Caregivers
I was interrupted by hospital curfew, and our video work had to stop. Many thanks to Alejandra for stepping up and doing the vlog, about what makes a good caregiver.

Second “Nick’s Crusade” Video Blog: ADAPT Action and the Olmstead Decision
I discuss the arrests of ADAPT protesters in Washington, DC demonstrating against unnecessary institutionalization, amid the tenth year since the Supreme Court’s Olmstead decision declared unnecessary institutionalization illegal.

First “Nick’s Crusade” Video Blog: Day 236 in Hospital
My continuing unnecessary institutionalization shows why the Community Choice Act is so urgently needed.

COLLECT ALL NINE!

The First Video Blog Series From Inside An Institution In History!

More to come…

Nick

My Story Taken To The New York City Council

Posted by – June 17, 2009

The New York City Council heard testimony today regarding the  Proposed Res. No. 1783-A, a resolution urging Congress to pass the Community Choice Act.

My partner Alejandra testified, and told my story.

Alejandra in the Council chambers

For the full text of her testimony, go here: NYC Council Hearing: June 17, 2009

Ninth “Nick’s Crusade” Video Blog: Too Many Setbacks To Count

Posted by – June 16, 2009

The Ninth “Nick’s Crusade” Video Blog

Ninth “Nick’s Crusade” Video Blog: Too Many Setbacks To Count (June 15, 2009) from Alejandra Ospina on Vimeo.

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]

Sixth “Nick’s Crusade” Video Blog: What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced

Posted by – May 24, 2009

Sixth “Nick’s Crusade” Video Blog from Alejandra Ospina on Vimeo.

What Life In An Institution Is Really Like, And Why This Entire Model Should Be Replaced

Writer/Director: Nick Dupree
Cinematographer: Alejandra Ospina

Video put together in 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 been in the institution almost 8 months now; you see the clock tickin’ away. It’s the large hospital ventilator1, large and unnecessary, unlike the one at I had at home2. Here you see the tangle of unnecessary double limb tubes3. And that’s me.

I’m doing this blog because I want people to know what an institution is really like, and why the model is broken and needs to be replaced.

Institutions are usually large and they cost a lot to keep open. Just the cost of electricity for a giant institution will blow your mind. And then you have to pay for all the food, all the staff, the administration, the financial people to handle all the billing… like a small army has to handle the billing. And then, with something so large, there’s not enough money to hire a lot of staff for the patient care, so institutions are always going to be understaffed. You’re always gonna have, you know, 3 or 4 staff to a unit of 20 people, or maybe 2 staff to 20 people. For the nursing home part of the facility here4, you have way less than that, and what happens is you come here as a patient, and what you soon find is that there are not enough staff to go around. The staff have to take care of other patients, so you’re gonna be alone in a room most of the time. And you just hope when you ring the call bell, somebody is close enough to the nurse’s station to actually hear it.

And it’s an environment where things get missed, because there’s not enough staff. The little things that get missed… the quality of life of the patient goes through the basement. You might not be able to eat when you want to eat, because there’s not enough staff. You have to eat when there’s staff there that can help you, and that might only be an hour a day, or whatever. So things get missed. And it’s not that the nurses and the aides are bad, that’s not true at all. I’ve met a lot of good, really good nurses here, really good aides. With very few exceptions, they’re good, but they just don’t have time.

Recently, you’ve read about abuse in institutions, and the solution that the state always comes up with is: let’s increase funding, let’s give more funding for oversight. And ultimately, that’s not going to fix the problem. It’d be like giving a new paint job to a car that has no wheels. The model itself is broken.

No matter how much money you pour into these institutions, it’s not going to fix the underlying problem, and that’s segregation. Institutions segregate people and keep them stuck with no family! And no friends, or friends that have to leave after the visiting hours, and the person is left alone, and that negatively affects their recovery.

For about 17 years, I had nurses in the home setting, one-on-one care5. And when you’re severely disabled, you can’t afford to be in an institution. Although it costs exponentially more than home care, if you’re severely disabled, you can’t afford to be in a nursing home. So the entire model has to go away from outdated nursing homes, and all that money has to go into community services, or the quality of life, and the health outcomes, with infections and everything else, are going to be terrible.

Changing the system is something that this country has to do.

Footnotes

1. The Puritan Bennett 760 ventilator
2. Seems really unnecessary after using the (comparatively) much smaller LP ventilators for 14 years.
3. Seems really unnecessary after using the (comparatively) much simpler single limb circuits on the LP vents for the past 14 years. Note how the tangle of double limb tubes makes it look like I’m being attacked by the Flying Spaghetti Monster.
4. The entirety of C Building and two floors of the A Building are dedicated to the nursing home. The rest of A building are hospital units. I am in a rehab hospital unit in the A Building.
5. I naturally compare my experiences here to my life with one-on-one nursing care back home in Alabama.

Abuse People, Get Rewarded With More Money??

Posted by – May 24, 2009

It sounds absurd, right?  But that’s what’s been happening with institutions that abuse people with disabilities.

First, an example of abuse from my local area:

NEW CITY – Frank Zanghi says his blind, deaf son, who uses a wheelchair, was abused when he lived in a facility for the developmentally disabled in New Jersey years ago. His son’s front tooth was knocked out, his back was slashed and his penis required five stitches.

Now what happened to the monstrous place that subjected a deaf/blind child to such horrible physical and sexual abuse? The perpetrators were jailed? At the very least, was the institution involved shuttered, and the millions of taxpayer dollars supporting it moved elsewhere to non-abusive settings? Nope and no.

The father of the victim wants more funding for the types of places that so severely abused his son.

Zanghi says the abuse happened because of funding cuts to the facility. Now he’s worried that Gov. David Paterson’s proposed budget that reduces funding for the Office of Mental Retardation and Developmental Disabilities will take a severe toll on organizations like Jawonio, where his son, Joseph, has been receiving care for 15 years.

Source: The Journal News: Rockland advocates for developmentally disabled lobby for funding

Though Jawonio is not the same culprit in New Jersey that abused Joseph, NO institutions should be receiving financial rewards (increased funding) for the abuse and low quality of life they so often provide us. We should shut down institutions, and put that money into home care and small group homes integrated in our neighborhoods. We should make this transition all the faster when the recession is pressuring states to shed expensive and outdated programs like institutionalization (sadly, states have not been increasing home care to compensate as they close institutions).

Further, although funding cuts definitely hurt quality of life in institutions, increased funding often makes no difference in these hell holes. Last year, the state of Texas poured millions into its state institutions. The result? The night staff at Corpus Christi State School arranged human dogfights, threatening mentally disabled residents with jail unless they fought, and laughing at their terror and betting on the outcomes. ABC News recently brought national attention to this disgusting story (warning: contains disturbing violent videos).

ed

In this disturbing image of the "fight club" at Corpus Christi State School, one resident chokes another, as staff snap pictures with their cell phones.

After seeing this debacle, merely the latest chapter in its long and infamous history of abuse, the state will obviously close the doors on this dangerous environment and move the residents somewhere safer, right? NO!! Texas’ solution? Putting an additional $112 million into their 13 gulags for the mentally disabled! Whenever they abuse people, these institutions get rewarded with more money! Incredibly, this $112 million dollar commitment was enough for federal prosecutors to back down on the numerous civil rights violations they had found, and settle the case. Closing down these places isn’t even on the table; all the thinking is deeply embedded “inside the box.”

“They’ve already dumped lots of money into the system and nothing has really improved,” said Beth Mitchell, Senior Managing Attorney of Advocacy Inc., an organization that works to protect the rights of Texans with disabilities. “It’s sad that we may end up spending a significant amount of money and not see a significant improvement to the system.”

Source: ABC News: After ‘Fight Club’ Scandal, Texas Will Pump Over $100M into Residences for Mentally Disabled

If we actually care about stopping abuse, we have to move to a new, community model.  Repainting and refurbishing a car with no wheels won’t get us anywhere.

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

Medical Personnel’s Hands So Tied By Liability Concerns They Hesitate To Save A Life

Posted by – April 1, 2009

Months ago, a serious incident happened on Unit A13. Suddenly, I heard the operator blast over the loudspeaker “CODE BLUE A-APPLE-13!! CODE BLUE A-APPLE-13!!” Aides frantically checked all the patients, coming to me first (because I’m in the first room). They ran up and down the hall. Everyone was fine. “WHERE’S THE CODE??”

It wasn’t a patient coding, it was one of the staff. A phlebotomist (guy who draws blood for tests) collapsed near the elevator, evidently of a major heart attack.

He is a grimly depressed looking guy with dark cones under his eyes that give him a bat-like appearance, big ears and chubby jowls, and I have been stabbed by him numerous times. I think he’s Pakistani, but he and the other phlebotomists who’re part of my life here rarely talk (blood tests are srs bzn).

Phlebotomist dude

Phlebotomist dude

a quick sketch by me, approximating the guy’s appearance

This guy was in bad trouble, and they had to work hard to get his heart started again (heavy duty CPR). An ambulance raced to the scene. The paramedics helped with CPR, but then a problem; they didn’t want to transfer him to the gurney.

“He’s not a patient here, so we don’t know if we’re covered.” A heated argument ensued. In cases of cardiac arrest, there’s not a second to waste.

The aides jumped in and angrily did it themselves, putting him on the stretcher, then the paramedics rushed him to the emergency room. “He’s an employee! he’s one of us! it could be me on that floor” an aide told me when she relayed the story that night. They didn’t know if he would make it when he left.

Fortunately, he lived, and is now over 6 months later he’s back at work, silently and efficiently stabbing me and others, though he lost lots of weight.

But this incident exposes some very serious issues. Has the morality in our society sunk so low, that a remote risk of liability is worth more than a man’s life?

This man survived; how many haven’t because of this madness?? When medical personnel’s hands are so tied by liability concerns that they hesitate to saves lives, does that mean the medical system is too f’d up to function and is pretty much finished? Are we so weighed down by our tangle of draconian rules and regulations that we would, even for an instant, consider the liability of moving someone a greater risk than the liability of letting him die?

Is covering yourself now more important than humanity, morality, and even saving a life? I’m usually a calm person, but stuff like that makes me want to throw down!

I really don’t understand what the health care industry is becoming, but it seems to me the antithesis of the bold, pioneering American spirit. Refusing to transfer a code blue guy to a gurney due to liability concerns is cowardly and selfish, and at worst possibly “negligent homicide” if death results, or “criminal indifference,” and at best “reckless endangerment.”

Is the American medical culture in code blue? How do we resuscitate it?

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 gillion dollars/day hospital instead of home care for half that.

So for now, I’m living on an island designed for the reform of 19th century plug uglies, 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.

Me in my room on unit A13.

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.

The North campus is more of a general medical-surgical hospital, with over half of the units allotted for their nursing home, but there is also one ventilator unit (with roughly 28 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.
Here on the rehab side A13 it’s 30 patients or so at absolute maximum, and we get people (mostly men) here for respiratory and/or trach-related rehab, like people who are trached temporarily following an accident or mega-illness and are here to be un-trached AKA “decannulated,” and also more traditional rehab like guys who’re post-heart attack and quadruple-bypass surgery, guys recovering from a broken leg or getting shot, every description of person and injury.

Lots of black guys who were shot and subsequently became paraplegic, quadriplegic and the like were rehabbed here and then, largely due to lack of housing and home care and NOT medical necessity, spend the rest of their lives in the nursing home section. They congregate in the halls, the brotherhood of shot Brooklyn dudes in powerchairs creating a mobile “front stoop” community that feels just like the front stoop-congregating in inner city Mobile, AL. These prominently visible guys give the North Campus its predominant culture and “feel,” though there are many less visible people caught here for more unexpected and random reasons, like the older Jewish guy who was here for cardio-rehab 20 years ago or something and ended up staying here because he lost his apartment, despite having no medical needs excepting taking his heart meds. He needs help with affordable housing, not a nursing home-level of care™.
There are lots of immigrants here too, this being one of the few rehab hospitals that will take an injured or disabled person who is uninsured and/or undocumented from Bellevue or other city hospitals.
There’s an older Afro-Cuban dude here in an old metal clunker hospital wheelchair who claims to be a “brujo” (male witch) able to put hexes on people and often gets into confrontations with the nurses…

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 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 section, 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.

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 Alejandra 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

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