I wish Congress would have put protecting the most disabled Americans ahead of uninsured able-bodied people, but they didn’t. For Congress, people like me are invisible.

The states slashing Medicaid the deepest (the Southern states) are the ones that will see the most new Medicaid eligibles thanks to “Health Care Reform.”

PERFECT
FISCAL
STORM

That means life for people with disabilities in the South is about to get even worse. Good thing I fled Alabama.

Medicaid, especially in the South, is increasingly in tatters. State Medicaid programs were slashed to the bone in the 90s thanks to “the Republican Revolution” and now there’s no fat left to trim, so they’re taking chainsaws to muscle and bone.

In the Wall Street Journal, it discusses a woman who’s had to sit in her own waste all day thanks to state budget cuts. I suppose the state hoped her bed sores and inevitable sepsis take her quickly, otherwise Medicaid will be on the hook for expensive hospital stays that would dwarf the cost of just leaving her f#$%ing home care uncut in the first place. I’ve seen this happen over and over again to people I fight for. It’s left me scarred to depths few of you could ever understand.

Here’s the Wall Street Journal piece, by Clare Ansberry.

FLORENCE, S.C—Tandem forces of shrinking state budgets and rising health-care costs have collided and struck a small brick ranch house in this rural town, home to Barbara Hickey.

Born with cerebral palsy, Ms. Hickey, now 67 years old, is confined to a motorized wheelchair. She lives alone and relies on certified nurse’s assistants to get her in and out of bed, bathed, clothed and fed.

In December, she received a letter from the South Carolina Department of Special Needs and Disabilities, saying her weekly 50 hours of personal-care help was being cut to 28 hours. That meant Ms. Hickey would get help for two hours in the morning and two hours at night. If she needed to use the bathroom in between, she would sit in a soiled diaper.

After several days of reduced care, the local office of the South Carolina Legal Services appealed the cuts on behalf of Ms. Hickey. Her hours have been restored pending the appeal.

Home health care—funded largely by Medicaid—generally costs less money than institutionalizing developmentally disabled people like Ms. Hickey. But the political reality is that it’s easier to cut back home services than to close a 24-hour facility, which can leave people with nowhere to go. Thus, some of the biggest cuts around the country are happening in the basic services that help the disabled cope at home.

South Carolina says it has little choice but to cut funding for Medicaid. It faced a $563 million deficit for the current fiscal year, and like other states must have a balanced budget. Medicaid, the joint federal-state health-insurance program for the poor and disabled, already consumes about 20% of its $5 billion budget and is one of its fastest growing costs.

The health-care program is on course to consume 40% of the budget of South Carolina in five years, and leaves little for anything else, says Gov. Mark Sanford. “It could force legislators to either cut further into bone in the areas of education, law enforcement and economic development, or raise taxes. Neither option is palatable.”

The state already is making painful cuts elsewhere. The state’s Department of Juvenile Justice has closed five group homes and cut 25 after-school programs. There are 1,000 fewer public-education teachers this school year than last.

Across the country, budget-strapped states are focusing on Medicaid. Created in 1965, it is now a $379 billion program, including state and federal funds. State spending grew an average 7.9% in fiscal 2009 as the economic crisis hit and more people signed up for Medicaid.

It was the highest growth rate since the last downturn six years ago. Spending is expected to keep growing at that pace for the next decade because of rising costs and growing enrollment.

But states don’t have much flexibility when it comes to what they can and can’t cut inside Medicaid. Although it is a state-managed system, the federal government pays a percentage of each state’s total costs and makes many of the Medicaid rules. Under federal Medicaid law, states must offer inpatient and outpatient hospital care, X-rays and lab services. They also have to cover nursing-home services and meet certain standards, such as staffing ratios.

There are further constraints this year. States can’t reduce Medicaid eligibility this year because of a condition attached to federal stimulus money, and under health-care reform, they can’t eliminate existing programs.

States also run up against other laws when they make deep cuts. Lawsuits have been filed in South Carolina, Florida, Connecticut, Virginia, Mississippi and New York, claiming Medicaid cuts make it impossible for those with disabilities to live at home and that it violates the Americans with Disabilities Act.
(I know the lawyers behind this class action. I say RIGHT ON!!!!)

Logically, states would cut the most expensive, least efficient services and keep the most cost-effective. But because of mandates and the need to save money quickly, that isn’t as easy as it sounds.

For example, home care—because relatives often provide some of the care—is generally cheaper than housing people with developmental disabilities in institutional facilities. In 1993, the average Medicaid cost for each person with disabilities was $48,500. At the end of 2008, the latest figures available, it cost an average $55,000. Adjusted for inflation, that actually represents a 23% decrease, largely as a result of more services being shifted away from costly institutions to the home, says Charlie Lakin, director of a University of Minnesota program that tracks services for the developmentally disabled.

But many in-home services, though critical to those receiving them, are optional. Furthermore, there aren’t many minimum standards set for in-home services, so it’s easier to cut them without violating funding requirements. There are fewer immediate consequences for the state when it cuts those services because families won’t generally abandon disabled relatives and leave states on the hook for housing.

Cutting home care could ultimately prove penny-wise and pound-foolish, however. It could push more people into institutions or large group homes because that is where services are guaranteed, even though institutional care is more expensive.

…

The department’s fiscal problems have been exacerbated by past spending decisions. A special state audit released in December 2008 showed that the department hadn’t provided many new services for which it had received funding and, as a result, it couldn’t recoup millions in federal matching Medicaid dollars. For example, the state spent less than $700,000 of $10 million allocated to serve autistic children, which resulted in the loss of $13.6 million in federal matching money. The state said it couldn’t ramp up the program fast enough because it couldn’t find qualified service providers. After the audit, the executive director of the department and four of the department’s seven commissioners resigned. The department has since implemented most of the recommendations made by the Legislative Audit Council.
(This same thing nearly happened with the NHTD –Nursing Home Transition & Diversion– waiver here in New York: the bureaucracy imposed on providers was SO ridiculous than very few participated, and the rules were so cumbersome for patients that, in the program’s first two years, only one patient downstate–me–transitioned home from a facility!)

Recent state cuts have targeted developmentally disabled people living at home. In December, families were told that some of their in-home support was being cut by as much as half.

Brian Phillips, a 37-year-old with cerebral palsy, was told that he was losing half of his personal-care hours. He can work a TV with a remote control but can’t dress or feed himself, or get in and out of his bed or wheelchair.

He lives alone with his father, James, 70. The elder Mr. Phillips, who has had open heart surgery and whose heart functions at only 26% of its capacity, cannot lift Brian on his own. He appealed the cuts and the hours were restored pending his appeal.

“These are cuts no one wants to make. They are very difficult for agencies to implement and they are very upsetting and very, very difficult for our families,” says Lois Park Mole, spokesperson for the state Department of Disabilities and Special Needs.

People will generally do what they must to keep their disabled family member at home regardless of the cuts. At some point, however, even the most dedicated may not be able to continue, especially as their own health deteriorates.

…

In Aiken County, Board of Disabilities Executive Director Ralph Courtney says waiting lists for services are growing. There are more than 5,000 on waiting lists for various services, from residential programs to in-home programs.

“We want to give families hope to keep their family unit together, but in reality there is very little we can put in place to assist them,” says Mr. Courtney.

In-home support is cheaper, he says, than the alternative: group homes and larger residential programs that need to be maintained and staffed 24 hours a day. “But you can’t put people out on the street,” he says. “You can cut in-home support.”

Even though Ms. Hickey lives alone and needs help with nearly every aspect of daily living, it cost less to have her live in a house with 50 hours of personal care help than in a nursing home. Institutional care in South Carolina costs about $100,000 per person a year, compared to $39,000 for home and community services, according to the University of Minnesota research.

Read the entire article here: Disabled Face Hard Choices as States Slash Medicaid

How does littering the entire country with families destroyed by Medicaid cuts, jive with HEALTH CARE REFORM?

Honestly, I have gotten so many hate messages over the years, I’m now convinced that the Americans will continue to react with cold indifference, or, worse, celebration–”good riddance! No one is gonna force me to pay for you useless leeches!”–as Medicaid policy continues to cull out people with disabilities like me, UNABATED.

And you wonder why I’m so angry that I’d consider reconstructing the U.S. entirely? It’s because my every day experience involves the above Kafkaesque Medicaid policies harming me or the people I care about!

Nick

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Insurance company bureaucracy is even worse, but federal programs have to be significantly better in the future for there to be meaningful competition. Right now, the government health care system is still far too fail. Medicaid is deeply corrupt, admitting people to nursing homes because institution owners and their lobbyists line the pockets of state legislators; people are even stripped of home care just for turning 21, and forced into institutions. As far as Medicare goes, its fee schedule encourages procedures over responsible diagnosis and management, causing the death of primary care and creating a costly and disastrous situation for patients. An old man will have no problem finding a cardiologist to do an angioplasty, but may find it near-impossible to find a primary care specialist who can manage him with meds instead.  A crude example, but it speaks to how costs can explode when so few primary care docs are around and it’s mostly proceduralists who have survived the extinction. Most new doctors the past few decades have stayed away from family practice because Medicare’s the AMA’s drastic undervaluing of the E&M (evaluation and management) reimbursement codes make it difficult to survive financially as primary care physicians. You get what you pay for, and Medicare (and the private insurance industry that follows Medicare’s lead) pays for procedures, procedures, procedures, NOT talking to patients and thinking about what’s best for us. According to Medicare, taking a detailed history from a patient is worth nothing more than something like the first 27 seconds of a proctoscopy; I rarely see doctors taking detailed histories anymore, outside of residents in university hospitals who are ordered to do so. Do plenty of docs have to do more and more procedures just to stay afloat and keep their doors open? YES!!

Aside from a fee schedule that has buried primary care and incentivized unnecessary procedures, Medicare has also become such an unwieldy bureaucracy that even the most basic functions are drowning in red tape.

Read this personal experience from primary care specialist Dr. Toni Brayer:

Dear President Obama,
I am in favor of Health Care Reform and I agree with you that universal coverage and eliminating the abuses that both patients and doctors have suffered at the whim of the for-profit insurance industry must be curtailed.

But I also want you to fix Medicare. Medicare is so bureaucratic that expanding it in its current form would be the death knell for primary care physicians and many community hospitals. The arcane methods of reimbursement, the ever expanding diagnosis codes, the excessive documentation rules and the poor payment to “cognitive, diagnosing, talking” physicians makes the idea of expansion untenable.

May I give you one small example, Mr. President? I moved my medical office in April. Six weeks before the move I notified Medicare of my pending change of address and filled out 22 pages of forms. Yes, Mr. Commander in Chief…22 pages for a change of address. It is now mid-August and I still do not have the “approval” for my address change.

I continue to care for my Medicare patients and they are a handful. Older folks have quite a number of medical issues, you see, and sometimes it takes 1/2 hour just to go over their medications and try to understand how their condition has changed. That is before I even begin to examine them and explain tests, treatment and coordinate their care. Despite the fact that I care for these patients, according the Medicare rules, I cannot submit a bill to Medicare because they have not approved my change of office address.

I have spent countless hours on the phone with Medicare and have sent additional documentation that they requested. I send the forms and information “overnight, registered” because a documented trail is needed to avoid having to start over at the beginning again and again. I was even required to send a signature from my “bank officer” and a utility bill from the office. Mr President, I don’t have a close relationship with a bank officer so this required a bank visit and took time away from caring for patients…but I certainly did comply.

I am still waiting to hear from Medicare. At my last call they said they had not received yet another document, but when I gave them the post office tracking number, they said it was received after all. They could not tell me when or if they will accept my address change.

I have bills stacking up since April and I just found out that they will not accept them if they are over 30 days old. I have cared for patients for 5 months and will not receive any reimbursement from Medicare. The rules state I cannot bill the patient or their supplemental Medicare insurance either.

Believe me, Mr. President, I commend you for taking on such a huge task. Please also know that Medicare reform is needed along with health care reform.

A loyal American,
Internal Medicine (aka: primary care) physician

Source: EverythingHealth: Fix Medicare

It seems like the government doesn’t want doctors participating in Medicare, and makes the reimbursements so low and the hassles so high (they can’t even manage a simple change of address without a half-year bureaucratic nightmare) that more and more providers just give up. Yes, this is yet another case of the government’s unfortunate cranial-rectal inversion.

Dr. IcedLatte lists more aspects of modern medicine that desperately need to change here.

The Tower of Babel

Nick

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Back in the early 90s, before 19-year-old girl “pharmacy technicians” were the norm, and most medications were prepared by actual licensed pharmacists, we had a serious mix-up with a medicine involving my younger brother.

He was still a baby then, about six years old, and was taking antibiotics (in liquid form). Just in time, we realized the label was papering over the REAL label, which identified it as a powerful anti-seizure sedative that likely would have killed my brother.

Mislabeling kills people. My mom went down to the pharmacy and hit the roof.

Turns out that pharmacist was crazy overworked for weeks and fatigued to the max. Why? the pharmacist shortage, the shortage that would soon force them to delegate much of the work to 19-year-old girls.

That pharmacist was put on forced leave for several weeks.

Because of this pharmacist shortage, much of the work of handling and passing out medications is now done by 19-year-old girl “pharmacy technicians.” Is this safe? In Cleveland, it wasn’t.

Emily Jerry, the 2-year-old daughter of Christopher and Kelly Jerry, suffered an agonizing death after a pharmacy technician gave her a solution containing 23 percent salt at Rainbow Babies & Children’s Hospital on Feb. 26, 2006.

The solution was supposed to be about 1 percent salt. The child was undergoing her final treatment for cancer.

Ohio governor signs ‘Emily’s Law’ forcing standards for pharmacy technicians

The supervising pharmacist, Eric Cropp, was recently convicted of involuntary manslaughter because he didn’t catch the mixing mistake. The young girl pharmacy technician, Katie Dudash, was not charged with a crime after agreeing to testify against Mr. Cropp, who she said approved the IV bag mixture even after she told him she wasn’t sure it was right.

As a result of this high-profile FAIL, Ohio passed “Emily’s Law,” which requires the Ohio Board of Pharmacy to test and certify pharmacy technicians. Emily’s Act, introduced in the U.S. Congress by Rep. Steve LaTourette (OH – 14th) would also require some sort of college training for pharmacy technicians, and I support that idea even more.

Please comment. Are you comfortable with 19 year-old girls with minimal training mixing and arranging your medications? If not, do you see Emily’s Act as a good solution? What should be done?

Nick

(hat tip to Buckeye Surgeon for bringing the Cleveland pharmacy technician fail story to my attention)

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The US can engage in meaningful partnerships across sectors and help developing nations with the construction of accessible infrastructure, expanding inclusive education and vocational training opportunities. By signing the Convention the US is dedicated to these efforts. Can we make a different, “Yes We Can!”

Wut?? The U.S. is going to be like the Peace Corps for accessibility of the third-world’s infrastructure or some $#!T?! PLEASE!! We can’t even implement our own disability rights laws! As we speak, the feds are moving against ENTIRE TOWNS that are inaccessible and violating the ADA! Don’t send the Accessibility Corps to Africa or India; first send them to renovate the Mobile Public Schools! First send them to Ann St. in Lower Manhattan, where most of the businesses are inaccessible, and all over the five boroughs, where inaccessible pre-war buildings seem to be the rule, not the exception. Where’s the US’ “meaningful partnerships across sectors” to address this inaccessible McDonald’s on 429 7th Ave. off W 34th, which is a major tourist area?

Picture of some serious McFail in accessibility. Alejandra provides us an important public service by documenting the many accessibility fails of NYC

We weren’t looking for some McDs yesterday, we were searching for pizza. The Spinelli’s pizza next door was accessible. When a locally-owned pizzeria tops a mega-giant multi-national chain in basic accessibility, that gigantic corporation needs to do some rethinking. As a special double bird to the elderly and disabled, this particular McDonald’s location has accessible entrances on either side of the stairs…that only open from the INSIDE, and only lead to stairs for the basement, staff confirmed. That leaves the middle stairs as the only access point for this location. Well done 7th Ave. McDonald’s, that’s some top-notch FAIL!

The U.S. has a lot of changes to make before we are a disability rights leader, an example to follow.

Any idea of when I’ll be able to access currently INACCESSIBLE public businesses? Maybe for the ADA’s 29th anniversary? 39th? Dammit, where’s the enforcement? We have no room to finger-wag and advise other countries about disability rights!

Nick

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The recent addition of the U.S. as a signatory to the UN Convention on the Rights of People with Disabilities (CRPD) has been much ballyhooed. Any idea if/when Article 19 of the CRPD Treaty will be enforced? That’s the article that guarantees me community choice, the freedom to live in my community, without fear of being segregated in a nursing home because the government will only provide care in institutions. You know, the right to “the most integrated setting” that TEN YEARS AGO the Supreme Court ruled we’re entitled to under the ADA?! This is particularly bitter for me because I am currently STUCK IN AN INSTITUTION.
Why agree to Article 19 when we are not following it?! The feds continue to look the other way while poorer states cut off community services for the severely disabled just because they’ve turned 21, and leave them no choices but death and/or an institution. I had to fight that policy years ago in Alabama, and won, but apparently this despicable practice is still going strong in Illinois, as I recently read on VentWorld:

My son turns 21 at the end of August and will lose his current funding source. There are no adult waivers or funding that would provide him with the same level of support he has now. Trying to get info to prove that he would NOT be safe in a skilled nursing facility or nursing home. I found a web site where I can look up the name of a home to find out their staffing levels, ratios, violations, etc. but I have to know the name of the homes first. When I do search for homes the results are not specific to ones that can handle complex ventilator care. The state of Illinois wants the cheapest plan for my son which means without proper documentation they will only provide him with minimal funding for nursing care in our home. He currently has 114 hours per week and 336 respite care hours per year. The state is saying the adult program only allows for about 30-40 hours per week – more if we use non-skilled people. The state wants to find the cheapest way to care for him and if that is a nursing home then I must have proof that the staffing ratios will not be adequate for him. Plus there are no facilities anywhere close to where we live so he would have to leave his community, his friends, his family, his job, etc. He is very social, wants to continue living at home and just because he has a birthday his life is being turned upside down. If you know of facilities that take patients 21 years of age or older with complex ventilator care and what level of staff and their ratios please respond. Thank you.

I’ve been fuming furious ever since I found this post a few days ago; despite all my years of work on the 21 “aging out” policies, despite the fact that I brought national attention to the problem and forced the HHS secretary to notice, the government (state AND federal) are still allowing this unintended consequence of the EPSDT program to put even ventilator-dependent people and their families in a horrible, untenable positions where their lives will be torn apart at best, and lost to nursing home neglect at worst. For adults, it’s incredibly difficult to remain at home if you have a severe disability. As Dr. Ford Vox wrote in a recent piece in Salon: “…if your electric wheelchair breaks down or needs a new battery, we’ll have no problem moving you into a nursing home. You’d prefer a new battery so you can continue living at home? You picked the wrong state. As a poor Missourian, you’ll have no more than 30 days for your rehabilitation. Not quite ready to go home? Need a few more days of intensive therapy? Again, you picked the wrong state. Missouri Medicaid wants to admit you to a nursing home so much that it also doesn’t allow for outpatient physical therapy services or in-home therapies, taking another essential tool out of the hands of your medical team.”

We won CRPA, The ADA, Olmstead, and more, but our victories seem almost inversely proportional to the realities on the ground, as states slash services to the bone at the same time as the disabled population (uninsured or uninsurable) grows. The president announced his “Year of Community Living” as a mother in Illinois prepares to move her ventilator-dependent son away from his job and community and into an institution just because he’ll soon turn 21 and “age out” of what little services the feds require state Medicaid agencies provide to children.

The “out of sight, out of mind” mentality of our politicians makes me angry; the fact that so many advocates in the disability community, who should be fighting for our most vulnerable people, are every bit as unaware of the 21 cutoff infuriates me. The termination of Medicaid home care services at 21 is like this wormhole that’s continuing to suck innocent people in and lead them to institutionalization and/or death, and the fact that I’m (as far as I know) still the only activist noticing this and fighting back is intensely frustrating and disturbing. We’ve GOT to stop fiddling while Rome burns, and unite to end the worst injustices. And the ongoing FAILURE to rectify the 21 cutoff situation should certainly be at the top of that list.

Nick

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But what about the most basic accessibility?  The most fundamental provisions of the ADA involve a guarantee of disability access to buildings open to the public.  But we’re not there yet.  Even in the Big City™ steps block wheelchair access to businesses.

19 YEARS after the Americans with Disabilities Act (ADA) enshrined accessibility in federal law, we’re still dealing with this crap!

We wanted to get into this Popeyes on Ann St. but couldn't because of this one step.

ADA FAIL

They’ve had almost two decades to build basic and inexpensive ramps, but haven’t.

It is UNJUST that we can’t access restaurants just because we’re disabled. These are some of the injustices that the ADA was primarily written to rectify. But the law is moot when unheeded and unenforced.

Does the ADA matter if businesses aren’t listening?

Nick

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“you keep on tellin’ me
‘baby I love ya,’
but MARRIAGE
just ain’t your game

You tell me I can have anything I want
but whhhyy can’t I have your name?

LYIN’
BACKSLIDIN’

callin’ each other brother
with your hand in his pocket
hypocrisy! yeah“

–Millie Jackson, singing her song “Hypocrisy” on Soul Train to promote her “It Hurts So Good” album, 1973.

Gov. Mark Sanford admitted last week that he "created a fiction" about where he was. He was actually in Argentina committing adultery

Cartoon by Rex Babin, Sacramento Bee, June 26, 2009

This is the same Mark Sanford that, when asked about philandering Republican Congressman Bob Livingston (who resigned when his extramarital affair was exposed right before officially taking over for philandering Republican Newt Gingrich as Speaker of the House), said “I’m sure there will be a lot of legalistic explanations pointing out the president lied under oath, [Livingston's] situation was not under oath. But the bottom line is, he still lied. He lied under a different oath and that is the oath to his wife. So it has got to be taken very seriously.” (video proof)

Mark Sanford built his career on his moral rigidity and finger-pointing at those who weren’t as “upright” as him. Anyone who stepped outside the box became fodder for Sanford’s sanctimonious grandstanding. Especially gays. Sanford is one of the gay-hatingest politicians in America. One of his primary campaign platforms was how urgent it is to “defend marriage” against the gay threat. Were you “defending marriage” when you repeatedly begged your wife for permission to cheat, governor? (she refused to condone such behavior). Why is it that the “red states” most eager to “defend marriage” make up eight of the 10 states with the highest divorce rates? (according to the Census Bureau’s Statistical Abstract)

Cartoon by Dwane Powell, Raleigh News and Observer

Democrats cheat just as much as Republicans, but they don’t campaign for office with Bible-beating messages attacking those less righteous than them. That Bible they are waving actually contains many more condemnations of adultery than condemnations of homosexuality, which, if you listen to some conservatives, sounds like the ONLY thing the Bible talks about. The sages understood how destructive adultery is to families and communities. Unfortunately, politicians don’t.

These are men who love themselves deeply, need to be recognized and relish approval. These are men who adore getting praise and who often are surrounded by swarms of sycophants. These are men who, in some cases, need to exercise power and sometimes can become drunk from it. These are men who think the rules don’t apply to them and who think they’re untouchable.

Source: AP: Analysis: Why do politicians cheat?

There’s a culture of infidelity in every state capitol. I saw it in the Senate offices in Montgomery, AL; with the way Senators’ secretaries look at their Senators and how they interact like spouses, you’d have to be really oblivious to not notice what’s going on. State legislatures take some of the most arrogant and entitled men in a state, and, for half a year, assemble them in the capital city, far away from their wives. With scumbags like politicians, some infidelity is inevitable in that situation.

Next time a politician is presenting himself as moral arbiter, remember all of this.

Nick

Related Bloggery

Field Negro: The “hiking” excuse.

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Glenn Beck is stupid.

Several weeks ago, I slapped down an idiotic routine from Beck, and now, he’s at it again.

This time, he’s making outrageous comments and going completely off the rails about new Supreme Court nominee Sonia Sotomayor.

The rallying cry of the Republicans against Obama’s nominations has been “EMPATHY IS BAD!!!”   This from the same group that spent the last three decades beating us over the head with their holy book that commands love and empathy.  They don’t want empathetic judges! They want automatons that will apply the LETTER OF THE LAW without “gay” things like “feelings” or “considering the situation.” And if you break away from this particular party line, you’re THE ENEMY, on par with Hitler.

Beck cites Hitler example to state that “empathy leads you to very bad decisions”

Right, Glenn, when I think of empathy, the first person that comes to mind is HITLER.

Glenn suggests that Hitler’s extermination program to cull people with disabilities (he calls it out by name, Action T-4) was borne of empathy, and thus no judge with empathy should be on the bench.

Hitler’s euthanasia program had nothing to do with “mercy” or “ending suffering,” and everything to do with their sicko “racial hygiene” policies to achieve a “pure” master race.  The notion that the Nazis were “empathetic”–does he think there’s something warm and fuzzy about old Adolf?–puts Mr. Beck decidedly aboard the Crazy Train.

Beck has focused his show lately on beating the drum against empathy.  In a very unfortunate move, he mocked people wanting diversity in our system, joking, “we need a blind, deaf, handicapped Asian woman!” for the Supreme Court (source). He just has to continue his tradition of mocking disability.

And he really misunderstood the Hebrew Bible.  He tried to make a point, and really failed. Dude, you’re doing it wrong.

YES, King Shlomo was empathetic! Because he knew that by pretending to expose the baby to danger, the real mother would reveal herself, and the dispute would be settled. Come on. Someone who recovered from alcoholism through Mormonism should know a lot more about the Bible than that.

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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).

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

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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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As I noted here, ablism (discrimination based on ability) is one of the dumber forms of injustice.

It’s dumb because it’s based on falsehoods. Just because someone is in a wheelchair, doesn’t mean they’re deaf or have mental retardation. That man in a wheelchair you just (loudly) talked down to? Maybe that was genius astrophysicist Stephen Hawking, or one of the most talented computer programmers in your city. FAIL. You never know the amazing things people with disabilities are capable of, especially now that rapidly-advancing computer technology and the internet is increasingly leveling the playing field. Despite our abilities and achievements, we are too often condescended to, and treated as outsiders and lesser beings. What a waste.

Personally, I was able to enter college at age 16. Still, I am too often assumed mentally impaired, not taken seriously, or, most angering for me, am openly disbelieved by some of the hospital staff. This is where stupidity crosses the line from annoying to dangerous. “The feeding tube is leaking!” “No it isn’t.” “Yes it is.” “No it isn’t.” And when they discover the bed is wet from the leaking tube and they have to change the pads, my prior warning doesn’t even warrant mention, much less an apology.

My girlfriend (the amazing, the wonderful, the beautiful) blogs here about hospital ablism, people not taking me seriously, and one incident where a hospital administrator told her that allowing her to stay late to help me would be pointless because she’s disabled. Paradoxically, those who deal with disability professionally (those in hospitals, nursing agencies, etc.) are often the rudest, most anti-disability people you’ll meet, much worse than random people off the street or at work or school.

And now for rank idiocy! sorry to digress into silly season here, but I can’t let Blogging Against Disablism Day go by without posting the footage of Glenn Beck recently mocking Obama’s aunt’s disability (warning: contains extreme, brain-boiling stupidity). He’s essentially an 8th grade class clown, and here he’s mocking Obama’s aunt’s limp, and, more broadly, making fun of anyone sympathizing with people with disabilities. Ha ha, only a weak-kneed bleeding heart wussy would hesitate to deport a disabled person to Africa where nothing’s accessible!

Glenn Beck is stupid.

Glenn Beck is an idiot.

Society needs less ablist idiocy, not more.

Nick

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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 vampire bat-like appearance, big ears and chubby jowls, and I have been stabbed by him numerous times. I think he’s Pakistani, but he rarely talks (blood tests are srs bzn).

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 back at work, silently and efficiently stabbing me and others. 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, doesn’t that mean America 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 spirit in code blue? How do we resuscitate it?

Nick

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From peoplewhositinthedisabilityseatswhenimstandingonmycrutches.com

An example from the blog.

Nick

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Photo credit: Alejandra Ospina

Photo credit: Alejandra Ospina

This failed sign says “STORAGF.”

People don’t realize it’s broken (a fitting metaphor for this place).

Inspired by FAIL BLOG

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“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

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