Category: My Life

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

Posted by – April 7, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nick

For MLK Day, this newsletter clipping about a speech I gave at Rev. King’s old church in Montgomery

Posted by – January 17, 2011

The University of Alabama
Alabama Disabilities Advocacy Program
School of Law Clinical Program

2003 Alabama Disability Summit

On August 14, 2003 the Alabama Disabilities Advocacy Program hosted its
third annual Disability Summit. Disability rights activists, advocates,
consumers, family members, and others gathered at the historic Dexter
Avenue King Memorial Baptist Church for a morning session that featured
Mr. Nick Dupree, Secretary of State Nancy Worley, Department of Mental
Health and Mental Retardation Commissioner Kathy Sawyer, and Governor
Bob Riley.

Mr. Dupree led off the session discussing the Supreme Court's Olmstead
v. L.C. decision in relation to Brown v. Board of Education, comparing
the racial desegregation of schools in Brown to desegregation of persons
with disabilities under Olmsted through deinstitutionalization and
community placement. Nick Dupree is a veteran disability rights activist
at the age of twenty-one. His efforts, along with ADAP, and “Nick's
Crusade" (www.nickscrusade.com) led to the development of a new
Technology Assistance Waiver approved by Medicaid in February 2003. This
waiver allows qualified Alabamians with disabilities over the age of
twenty-one to receive services at home, thereby limiting the need to
place these young adults in institutions.

Following Mr. Dupree, Secretary of State Nancy Worley addressed
accessible voting for persons with disabilities and Alabama. Secretary
Worley expressed her commitment to ensuring accessible voting and
explained the provisions of the recently enacted Help America Vote Act
(HAVA) that apply to persons with disabilities. Secretary Worley
encouraged people to contact her office (www.sos.state.al.us) with any
questions or comments about the new HAVA requirements.

Any problems with voting for persons with disabilities should be
reported to her office. Kathy Sawyer presented an overview of the Wyatt
Settlement. Commissioner Sawyer praised the progress the Department of
Mental Health and Mental Retardation has made under Wyatt. The
Commissioner also urged the audience to exercise their right to vote in
the upcoming tax referendum on September 9.

Gov. Riley concluded the morning session by outlining his proposed tax
package. The Governor emphasized that the package will both increase tax
revenue for the state and relieve the tax burden of those least able to
pay. Warning that misinformation about the tax package is being
circulated, Governor Riley asked voters to educate themselves about
details of the program. At the close of the Governor's address, ADAP
staff and guests marched from the Church to the State Capitol Building
for lunch and the afternoon session.

Exciting Stuff Happening Over At Superdude.org

Posted by – January 14, 2011

Today, Thursday the 13th of January, 2011, I’ve begun posting Theodore Roosevelt and the Rough Riders vs. Zombies with the first, 5-page Introductory chapter up.  At least one new page will be uploaded every Tues and Thurs.

Summary: It’s 1898, and a Zombie Apocalypse has hit the tri-state area hard. Theodore Roosevelt is New York’s only hope to wage war on the zombies, and muckraking journalist Jacob Riis the only man who can uncover the mystery of WHY the dead are rising.

Chapter 1: Introducing…Zombies!

Please check out the first installment and comment over at Superdude.org

I’ve put a lot of time into researching this, devouring relevant books, almost all in audio format… most of them I got free from the library or resources for the blind and disabled…

I would recommend any of these:

The Rise of Theodore Roosevelt by Edmund Morris

The Lion’s Pride: Theodore Roosevelt and his Family in Peace and War by Edward J. Renehan Jr.

Theodore Roosevelt: American Rough Rider by John Garraty

The Rough Riders by Theodore Roosevelt

Theodore Roosevelt (Autobiography) by Theodore Roosevelt

How The Other Half Lives by Jacob Riis

The Proud Tower: A Portrait of the World Before the War, 1890-1914 by Barbara W. Tuchman

The Spanish-American War and WWI by Joseph Stromberg

Still reading, not done:

The Imperial Cruise: A Secret History of Empire and War by James Bradley

Alice: Alice Roosevelt Longworth, from White House Princess to Washington Power Broker by Stacy A. Cordery

2 years

Posted by – August 28, 2010

August 28, 2008

The end of the beginning of the journey (Nick arrives at Coler-Goldwater Hospital in NYC from Mobile, via Atlanta and LGA).

I’m Bringing Super Back

Posted by – April 23, 2010

I’m not dead, and neither is Superdude. I’m bringing Superdude, my childhood comic book creation, back, and depicting anew his adventures, with the latest computer technology. It’s a sight to see, and you can get a sneak peek here:

Superdude Returns: Fall of a Hero

An elderly Superdude recalls his final battle with Devilish Dave.

Page 1

Page 2

Page 3

Page 4

Page 5

Page 6

Page 7

Page 8

Page 9

Page 10

Page 11

Page 12

Page 13

These are previews. When completed, the entire comic book will be put on Superdude.org and have text captioning for those who read with screen reader software.

Stay tuned!

Nick

Fun with labels

Posted by – November 11, 2009

Labeling things can be useful, like Several labels fresh from label maker, for medical supplies and Rear of cart with labels attached to power cords for respiratory equipment.

But sometimes it can go awry, like Photo of Nick.  He has a label stuck to his forehead.  It says BOY..

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.

For the collected bloggings of the institution days, see: The Coler Chronicles

A Year In An Institution

Posted by – August 29, 2009

How many months have I been institutionalized?

The number of the day

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

Click here for more Dispatches from Ventboy Alcatraz

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]

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.

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.

Photo of baby Jamie at four months old</b>

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.

My brother Jamie, a few years ago

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