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.

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

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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]

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

No, You CAN Mount A Humidifier On A Wheelchair. Have humidifier, will travel.

Featuring photos with my mom from our 1999 visit to NYC (I was 17) and cameos from the O RLY and YA RLY owls!

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Fighting For The Community Choice Act from Alejandra Ospina on Vimeo.

This, the Seventh Nick’s Crusade Video Blog, is a music video/photo mashup of ADAPT protests for housing and the Community Choice Act. For more information, go to http://adapt.org

The video features photos from ADAPT.org and Julie Maury, from recent ADAPT actions, and includes pictures of some of my favorite ADAPTers: Anita Cameron, Bob Kafka, Julie Maury and Nadina LaSpina, among many others.
The music is “Closer to Free” by The BoDeans.  Dig the rock accordion!

Brief Video Description
First protesters and their signs are shown from the Housing Action, “DUH CITY,” in Fall 2008 at the HUD offices in Washington. Then there are pictures of the Washington Action April 26-29, when ADAPT activists handcuffed themselves to the White House gate and crawled up the Capitol steps. 91 were arrested on April 27 and 99 were arrested on April 28.

Help me take this video viral!! Forward this, tweet this, post this on message boards and listserves, in blogs and comments. Please help us raise awareness about the CCA!
The video’s URL is http://vimeo.com/5003243

Nick

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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.

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Fifth Nick’s Crusade Video Blog: “A Seat At The Table” Determining Health Reform, Doesn’t Include People With Disabilities from Alejandra Ospina on Vimeo.

In my fifth video blog, I go after the administration’s health reform deliberations for their lack of inclusiveness.

Full transcript of the video, with supporting links and footnotes

Hello, this is Nick Dupree for the Nick’s Crusade blog.

This is day 262 of me being in an institution, and tonight I’m gonna talk about Barack Obama and the insurance industry.

Lately, the administration has been really ramping up, and saying that health care is their #1 domestic priority.  The health secretary, and Joe Biden have both said, that this is #1 on the agenda.

Now there have been a flurry of meetings at the White House about the health care package and what’s it gonna look like, what’s gonna be in it, what’s not gonna be in it.  And recently, Barack Obama met in the Roosevelt room with the top insurance executives.  On HealthReform.gov, they released this picture¹, with the caption that these are the health care “STAKEHOLDERS.”  Look at this picture.  It’s all white people! (except for the president)   And it’s all MEN, except for the two women beside the president, there’s another woman, an industry lobbyist, an industry lobbyist who’s at the table.  The administration keeps talking about “a seat at the table,” that the industry has “a seat at the table,”   And they’re offering them “a seat at the table” so they won’t oppose the plan.  Now … where’s MY “seat at the table?”  Where’s YOUR “seat at the table?”   Where’s the “seat at the table” for the black people and the people in wheelchairs?  You don’t see any people in wheelchairs at the table do you?   You don’t see any black people,or Hispanics, or Asians, or any minorities around this table, do you?

We’re giving the “seat at the table” to the people who already have the power.  And the insurance industry, they already have the power; they don’t need help from the administration.  They’re making trillions².  And they’re getting trillions, by denying life-saving care to millions of people.   They’re trying to limit the use of life-saving medical care; they’re sending denial letters like they did with my little brother.

They’re trying …  they’re SQUEEZING the American people.  They’re basically these giant leeches on the American economy, and the American people³.  Everyday people are getting SCREWED by these guys, and Obama is offering them “a seat at the table.”

In exchange, they’re offering to lower the explosive growth of health care costs.  They’re not offering to lower costs, let’s make this clear.  They’re not offering to lower any costs; they’re offering to slightly slow the growth of costs.⁴

This is a promise that they made during the Jimmy Carter presidency⁵, and we all see…and we all see how that worked.  They didn’t keep their promise, and I see no reason why they’ll keep their promise this time.

Voluntary regulation does not work, and I see no reason why these guys are getting “a seat at the table” and people… people with disabilities, get no “seat at the table.”

I don’t think that’s right. And I think that’s something that needs to CHANGE.

Footnotes

1. this picture.

The photo was originally captioned “President Barack Obama met with healthcare stakeholders in the Roosevelt Room at the White House on May 11, 2009.

In this photo from HealthReform.gov, President Obama meets with various corporate pigdogs from the Health Care industry.

I found the above photo on HealthReform.gov (though it’s now been replaced, along with the related links, in one of their near-daily updates)

2. “The US health care sector has combined revenues of 1.5 trillion annually.  Hoovers.com Industry Overview: Healthcare Sector. (for comparison’s sake, the entire continent of Africa has a combined annual GDP of 1.3 trillion)

3. Publications and Research: Study Shows More People Go Without Health Coverage as Insurance Costs Outpace Income Eightfold

4. http://healthreform.gov/factsheethealthreformstake.pdf

5. From a quote from a Carter administration official, in “No One’s Falling For Big Health’s Bogus Promise to “Reform”" By Joshua Holland, AlterNet. Posted May 13, 2009.

This is the first video blog edited by myself independently

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Transcription (as captioned in the video):

Hello, this is Nick Dupree for the for the Nick’s Crusade blog. This is my fourth video blog, and today is the 252nd day that I’ve been in an institution because I can’t get access to community services. And it seems that the Obama administration is not going to help us fix this problem — the problem of the institutional bias, where if you need services, they’re not readily available in the community so, so many people end up in expensive institutions, and it’s a lot worse for them, lowers their quality of life, and ends up costing exponentially more. I know in Alabama, it costs a quarter of a million dollars to keep someone in an institution, and it cost $70,000 to give them 24/7 home care. It’s a very stupid financial decision that the government keeps making, and despite all the activism and the years of court decisions that are on our side, we’re still not getting change we can believe in, as Obama says.

It’s even more disturbing, because during the campaign, Obama promised us that he would support the Community Choice Act, which would let people have a choice to live in the community, versus being forced to go into a nursing home, as that’s all the government will pay for.

He promised he’d support the Community Choice Act during the campaign, but yesterday we discovered that the Community Choice Act has been removed from the White House website. The White House website had the Community Choice Act featured on their Disability web page, and now it’s gone. They erased us. They erased what we really needed, and that’s despicable. And now, they’re going forward with health reform initiatives, without addressing long-term care. They’re going to reform health care without addressing one of the largest expenses of health care, which is long-term care. They say “we don’t have time”. With this kind of expense, how can we afford to wait? How can we afford, morally, to segregate part of our population, and keep them trapped in nursing homes with no choice? It’s not moral.

I advise you to go to the website of the President’s health reform initiative, HealthReform.gov. There’s no mention of long-term care, not a word whatsoever. There’s no mention of nursing homes, there’s no mention of home care, and there’s definitely no mention of the Community Choice Act. Go to HealthReform.gov and see for yourself. We’re not included, and our segregation is continuing unabated. Nobody notices us. That’s something that really has to change.

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– Nick

May 3, 2009

Text as transcribed in the video

For those of you keeping track, this is Nick’s 248th day of living in a hospital in New York City, while he waits for community services to be established.

As you can imagine, living in a hospital can make it hard to get your blogging done on time.

Hi, my name is Alejandra. and I’m doing a guest video blog post for Nick today.

One of the things Nick wanted to talk about is how important it is to have good supports for people with disabilities.

This support can take lots of different forms. In some cases, we might be talking about nurses who work in a hospital setting. Or staff at a group home or another residential program, personal care workers from an agency, people who are hired individually, or even family members or partners.

In all these environments, the fundamental goal should be the same: the person working in the support role should help the person who needs support to live their life as smoothly and independently as possible, doing whatever is needed to make that happen.

In Nick’s case, he spent many years in a home environment, receiving care from nurses in the community, and from family members. Right now, he’s a patient in a hospital, so nurses are his primary support people. Once he’s home again, he’ll work with nurses, and eventually with personal assistants that he’ll hire through a consumer directed personal assistance program.

While in the hospital, Nick has had a lot of time to think about the relationships between support workers and the people they support. In the hospital, one staffer in particular (who has since left, unfortunately) stands out in his mind. She was very attentive to meeting his basic needs, and to learning about the things she might not have been familiar with, and making sure everything got done safely and on time. For him, this means things like: getting his medicine on time, getting properly set up on his computer when he needs to be, getting transferred safely in and out of his wheelchair, help with his ventilator needs, and most importantly, making an effort to understand the things he’s saying, and interact with him on a personal level. Because of the nature of the hospital environment, it’s not always easy to find a staff member who is able to do and learn all the things that a patient needs.

Quality care means different things for different people. A good support worker is able to adapt and learn the routine of the person they are working with. They do more than just meet basic needs. They make sure they facilitate the person’s life as much as possible, by helping them succeed at work, school, a recreational program, community outings, or just to be as comfortable as possible spending time at home.

People with disabilities know how important it is to have good support. It’s what makes our lives work. There are times when we focus a lot on those who don’t do the best job, or cut corners.

But it’s also really important to acknowledge that there are many people out there who are committed to their jobs as support workers – home health aides and others, doing their best to make sure that the people they work with have the highest possible quality of life. In our healthcare systems, we should find ways to reward this work (financially and otherwise), and to use these exemplary people as a model for how things should, and can work.

I think that’s all I’ve got for now, but if I’m missing something, I’m sure Nick can fill in the blanks later.

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Transcription (as captioned):

This is Nick, of Nick’s Crusade blog. This is day 243 of me being in an institution in this lovely blue hospital gown. Right now, ADAPT activists are protesting in Washington, DC to end unnecessary institutionalization, like I’m experiencing, and making care available in the community.

10 years ago, there was a lawsuit that went to the Supreme Court about two women, Lois and Elaine, who, for no apparent reason, just because they had mild disabilities, were stuck an institution in Georgia. The Supreme Court ruled 10 years ago that under the Americans with Disabilities Act, unnecessarily institutionalizing people is illegal, and that we deserve, and have a right to, our services in the most integrated setting. So this case, this Olmstead decision, got Lois and Elaine out of the institution. And right now, Lois is protesting in Washington with ADAPT.

With millions of people still in institutions, when they don’t need to be, the promise of Olmstead has been a lie. The states have not implemented Olmstead, and it’s ridiculous. It’s time for a change.

Yesterday, the ADAPT activists met with the president’s health-care “czar,” and this “czar” said that they don’t have time to change institutional bias in their health care reform package this year. In response, ADAPT activists chained themselves to the White House fence, and 91 of them got arrested.

We have to fight back. It’s time to fight back against administrations that don’t keep their promises, against states that break the promises.

It’s time to fight back, time to support ADAPT, it’s time for the Community Choice Act – NOW!

Nick

Justice delayed is justice denied. Implement the Olmstead decision, include the CCA in health care reform NOW!

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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

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