Health care and non-compete agreements

Two years ago this week I got caught up in a legal dispute that briefly threatened my life. Obviously, I'm still alive, but a version of what happened to me could happen to anyone who consumes health care in America, so I figure people should know a little about it.

First, a little background on me: Because I have a sort of muscular dystrophy that weakens my diaphragm muscles, I've used a trach and ventilator to breathe for the past six years. Generally, lungs react to this artificial breathing set-up by making secretions that must be suctioned out of the lungs several times each day by a trained assistant using sterile gloves, a sterile catheter and a suction machine. I have 24-hour home care assistance for this and other help I need. But the most important thing my nurses do is to keep me breathing, put the circuit tubes between my trach and my vent back together if they fall apart, troubleshoot vent alarms and keep me from drowning in my own secretions. Life is better than you might think, but I have to have this care to keep breathing.

So. This dispute between the business partners of my vent-specializing home health care agency eventually led to my choosing the management of one set of partners over another, and that's when their legal dispute began to directly involve me. At that time my nurses all worked only with me within the agency. And I'm the only vent client my metro-area-based agency has had in my small town 60 miles outside of the Twin Cities. So my nurses followed the job and switched agencies with me in order to keep getting a paycheck. The agency I departed sued all my home care nurses for breach of a non-compete agreement (NCA). They also sought a temporary restraining order (TRO) to keep all my nurses from showing up at my house to work and, you know, keep me breathing.

Are you familiar with non-compete agreements? They are contracts between an employer and employee that restricts what the employee can do after they leave the employer for a different job. It's meant to protect an employer's business, client list, company secrets, etc. It requires the employer provide the employee "reasonable compensation" and typically restricts competing work within a geographical area for a set time.

It used to be that NCAs were mostly just for tech companies protecting research and development secrets, but increasingly these agreements are used by all kinds of businesses now, including for-profit health care businesses. What this means for ANY health care consumer is this: in the terms of an NCA all clients/patients are considered business assets. If your health care provider -- primary care physician, psychiatrist, obstetrician, oncologist, surgeon, dentist, etc. -- is suddenly barred from having you as a client because they change partnerships/clinics/employers and there's an NCA, you have no legal standing in a dispute between employer and employee. (Your provider could also suddenly lack access to your medical records, by the way -- one of many reasons you should always have copies of the most vital aspects of your medical history.) Need some sort of life-saving medical care and want the professional who knows your case? Your individual preference to stay with that medical professional likely will be no part of the legal discussion about financial harm to the employer and the livelihood of the employee.

An exception is if the legal discussion includes consideration of the "public welfare". For example, if the medical specialty of the employee in question is rare in your geographical area, an NCA may be disallowed or limited in scope to protect the public welfare. And some states disallow NCAs involving all physicians. But the "private welfare" of one individual client/patient is not "the public welfare" and your right as an individual to choose your health care provider may not be considered.

State policies vary wildly. All employment NCAs in California and North Dakota are disallowed. Florida very seriously favors employers over employees. Colorado, Delaware, Illinois and Kentucky disallow NCAs for all physicians, Tennessee and Texas protect some physicians, New Jersey disallows NCAs for psychologists, and Massachusetts disallows for physicians, nurses, psychologists and social workers.

I'm in Minnesota and my nurses being sued as third-party defendants for violation of their NCAs was considered by the court a viable part of a big messy case. I have a lot I could say about that messy case that complicated the lives of hard working people just trying to make a modest living by giving me knowledgeable and competent health care, but I'll try and stick to the topic of NCAs and health care here.

In my situation, I wrote an affidavit to the court about how my life would be endangered by the temporary restraining order (I needed both a lawyer and a notary public for that.) Then I showed up in court for the hearing when the TRO was being considered, even though -- and I find this both galling and very key to my whole point -- without me present, discussion of the TRO and my life-saving daily care would have gone on without me. Remember, as neither plaintiff or defendant in this case I had no legal right to participate. Although I'd like to believe the judge wouldn't have ruled on a TRO that interfered with life-saving medical care, I suspect it was my presence in the courtroom that day (with my vent huffing and puffing loudly) that got my former agency to immediately withdraw the request for the TRO. I do not know for sure if the judge ever read my affidavit.

After months and months, the full case settled and the question of the NCAs and their validity was never ruled on. There's a Minnesota Home Care Bill of Rights (MN statutes, section 144a.44.) that states that any client has "The right to choose freely among available providers and to change providers after services have begun, within limits of health insurance, medical assistance, or other health programs." The conflict between that statute and an NCA was likewise not adjudicated or even debated at the court dates I attended. In any case, those matters would have been addressed long after the TRO, if the TRO request hadn't been withdrawn.

Things might have turned out differently. I might not have had a nurse who showed me the complaint she was served. I might have been unable to read it and understand the immediate threat of the TRO. I might not have had access to a lawyer for the affidavit, or a ride to the courthouse to attend the day the TRO was brought before the judge. I might not have had such loyal, brave nurses who stuck with me through months of threats of financial penalties to each of them. I might not have had such an excellent home care agency to choose as I currently have and been stuck under the management of the agency that aimed these troubles at my nurses and me. But because consumers of health care are basically the collateral damage of NCAs, you don't hear many stories like mine.

In fact, Googling "non-compete and health care" offers mostly lawyers selling their expertise and almost nothing about the clients every enforced NCA against a health care provider must displace. There are a few cautionary tales besides mine, however.

In May 2010, Madeleine Baran of Minnesota Public Radio reported on the story of Nadine Parker and her two daughters. The eight- and ten-year-old girls had been seeing a mental health professional for about a year and were finally experiencing some progress with troubles including bedwetting and self-injury when an NCA came between them and the one counselor they had developed trust in. The only current remedy in Minnesota for these children's traumatic loss of support appears to be litigation.

[Mental health] advocates also said that the situation serves as a valuable lesson for mental health consumers. Many clients, they said, have no idea that their therapist, case manager or other provider would not be able to see them if the provider switched to a new agency.

"Realistically, the average client is not going to be thinking that far ahead," [Frederic] Reamer, [a national expert on social work ethics and one of the chief authors of the code of ethics for the National Association of Social Workers] said. "It's usually, 'I'm depressed. I need help. Can you help me?' [Not] 'Oh, by the way, do you work in a place that has a non-compete?'"

In the 2006 Kansas case Caring Hearts v. Hobley and Hardy, the appellate court upheld the original ruling in favor of the employer and against the defendant home care nurses. In reviewing the issue of "the public welfare" the appellate court stated (italics mine) that "there is no evidence that public welfare would be harmed by enforcement of the agreements. Hobley and Hardy did not present evidence at trial that the desires of any of their former patients would be thwarted if an injunction were issued and they were denied care that they specifically desired to receive from Hobley and Hardy. But even if there were such evidence, the issue is public welfare, not the private welfare of an individual patient."

Does the court imagine that the elderly clients do not care who provides their health care? The court doesn't consider it relevant.

So, how to avoid losing your oncologist halfway through your chemo treatments? How to keep the social worker your mentally troubled child is getting support from? How to hang on to the primary care physician who has seen you through the birth of all your children? There aren't any great answers unless you live in a state that has a statute disallowing NCAs.

But here's my list of things you can do to protect yourself as much as possible:

Ask your health care provider if they are bound by a non-compete agreement.
Ask if they have any plans to leave the business where they are currently employed.
If possible, choose a provider not bound by any NCA.
Repeat this process if and when you add any new health care provider to your life.
Repeat this process if and when your health care needs become more extensive or dire and continuity of care becomes more vital to your health.
Talk to your elected officials about protecting patient continuity of care by limiting or disallowing NCAs for medical professionals in your state.



Other stuff to know about NCAs:

The American Medical Association believes "restrictive covenants" to be unethical:

Covenants-not-to-compete restrict competition, disrupt continuity of care, and potentially deprive the public of medical services. The Council on Ethical and Judicial Affairs discourages any agreement which restricts the right of a physician to practice medicine for a specified period of time or in a specified area upon termination of an employment, partnership, or corporate agreement. Restrictive covenants are unethical if they are excessive in geographic scope or duration in the circumstances presented, or if they fail to make reasonable accommodation of patients’ choice of physician. (AMA Code of Medical Ethics, Opinion 9.02)

A physician in internal medicine in rural Idaho where doctors are scarce writes about taking a two-year sabbatical as the only reasonable way she can find to escape an NCA.

An academic paper on how NCAs affect the labor market for physicians. (If the math scares you, skip to page 27 for the research conclusions.) Spoiler: States most supportive of NCAs have fewer docs per capita.

In 2005, the Tennessee Supreme Court ruled that NCAs for physicians were against public policy and unenforceable. In response, the state legislature has repeatedly tinkered with statutes mostly having the effect of overruling that court decision and allowing NCAs for most physicians.

One researcher finds that NCAs often derail careers.

For a good primer on NCAs read the paper "The Law and Policy of Non-Compete Clauses in the United States and Their Implications" by University of Illinois professors Jay P. Kesan and Carol M. Hayes.

New book on Buck v. Bell

Image description: The cover of Lombardo's book shows sepia-toned photographs of two women and an infant. Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell by Paul Lombardo

A new book by legal historian Paul Lombardo explores, in depth, the 1927 U.S. Supreme Court case Buck v. Bell in which Justice Oliver Wendell Holmes famously declared "three generations of imbeciles is enough." This was the case that legalized involuntary sterilization of the "feeble-minded" and gave great credibility to the American eugenics movement.

Lombardo details not only the needless cruelty of Holmes' statement, but also it's utter inaccuracy. As described by USA Today science columnist Dan Vergano:

The three generations in the case, Carrie Buck, her mother, Emma, and daughter, Vivian, it turns out weren't imbeciles; Carrie was an average student and Vivian, taken from her mother and placed in the home of the family whose nephew had fathered her, made the honor role once in her short life.

"Buck earns a place in the legal hall of shame not only because Holmes' opinion was unnecessarily callous but also because it was based on deceit and betrayal," writes legal historian Paul Lombardo of Georgia State University in Atlanta, in his just-released book, Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell. Scientists and lawyers, including Carrie Buck's defense attorney, conspired against her, Lombardo finds in old records.

The inaccuracy wasn't an accident. Carrie Buck was used and betrayed at every turn:

In reality, Buck was at the [Virginia Colony for Epileptics and Feeble-minded] because she had been raped and impregnated by the nephew of her foster family the year before. The family sent her to the colony, where her mother resided, to escape scandal. [Physician superintendent of the colony, Albert] Priddy "quickly began collecting information to demonstrate the hereditary defects he was certain linked Emma and Carrie," writes Lombardo.

The Buck decision was popular in its time and as a public policy even encouraged the eugenic Nazi philosophies of racial health and purity. From Vergano again:

It wasn't until national publicity about sterilization abuse in the 1970s that the practice ended. In 1942, the Supreme Court struck down involuntary sterilization of inmates, but the Buck decision has never been repealed.

"Eugenics still fascinates today," says Lombardo, invoked in debates over genetics testing, abortion and the future of medicine. "The attitudes are still around that fostered eugenics. They aren't going away."

Slumgullion #48

Just a few good links. That's all you need, right?

Bush cuts outpatient Medicaid services -- You heard about this parting gift from our Commander 'n' Thief? The Wonk Room at Think Progress has the details:

After arguing that legislation to cut over-payments to private insurers would “harm beneficiaries by taking private health plan options away from them,” President Bush, on Friday, “narrowed the scope of services that can be provided to poor people under Medicaid’s outpatient hospital benefit.”

In which the Netherlands endangers reproductive freedom -- Sylvia at Problem Chylde writes about a proposed bill that wants any woman deemed unfit to parent to be forced to take contraception for two years or any children she bears will be taken away from her at birth. I followed one link backward from Sylvia to a column for the Toronto Star to a blog post at Disaboom -- isn't it nice to know someone at a major daily reads a crip site?

Where neurodiversity meets feminist theory -- Lindsay at Autist's Corner has a three part series where she assesses an article by Kristin Bumiller titled "Quirky Citizens: Autism, Gender and Reimagining Disability" in the summer issue of the women's-studies journal Signs. Interesting writing from a blogger I hadn't found until now.

Yes, it's exactly like Sophie's Choice

From Inside Higher Ed, here's the story of a seven-year-old ADA case against Louisiana's McNeese State University for failure to make the student union accessible to the disabled. In 2001, a student using a wheelchair injured herself while trying to pry open a restroom door. (For those unfamiliar with this particular access dilemma, imagine sitting in a chair that rolls while trying to open a heavy door towards yourself and hold it open while you pull yourself through, all in a usually very confined space.)

The noteworthy aspects of this specific case are 1) that the university president has stated that access to the student union -- where the school newspaper, yearbook, student government offices and the two major cafeterias on campus are located -- was not a high priority, and 2) that the school's legal team is arguing that the plaintiff, a former student with epilepsy who was recovering from several surgeries to a knee at the time of her restroom injury, was not completely incapable of walking and thus had no business using the wheelchair in the inaccessible restroom.

From the article:

In a 2007 summary judgment, a Louisiana district court ruled that McNeese had failed to meet its obligations under the federal disabilities law. The act required that the Old Ranch [nickname for the union] be equipped with an accessible bathroom because the building had been renovated after 1990, the court found.

McNeese is now appealing the judgment, arguing that [the plaintiff, Collette] Covington — who didn’t absolutely need a wheelchair, according to McNeese officials — isn’t entitled to coverage under federal law. Covington had started using the wheelchair about a week before the accident, not because she couldn’t walk, but because she wanted to get around campus “at a faster pace,” according to statements attributed to Covington in court documents.

“It is reasonable to assume, then, that Covington could have stepped out of her wheelchair temporarily in order to use the restroom,” McNeese’s lawyer wrote in an appellate brief.

Also noteworthy is that the author of the linked article on the case describes the university president's position as follows:

Under the harshest interpretation, Hebert’s words could mean that he simply doesn’t view giving disabled students an “education” as a “high priority.” In the broader context of his deposition, however, Hebert noted that McNeese was confronted with something of a Sophie’s Choice. Forced to choose between making classrooms accessible and making the union accessible, he said, McNeese chose the classrooms. Whether McNeese lacked the funds to do both, however, is disputed in the lawsuit.

Because deciding how to use public funds for a public facility is exactly like choosing which of your children to let the Nazi's kill.

The good news is this: As I post this, comments below the article are 100 percent positive and supportive of the ADA and following the law to provide disabled access, including this comment by Jane Jarrow, president of Disability Access Information and Support:

From the article, it appears that both Covington’s lawyer and InsideHigherEd missed the obvious in this case. The ADA was passed in 1990, but the Rehabilitation Act of 1973 (with it’s Section 504 regulations) was implemented in 1977. While the Rehab Act had somewhat less stringent requirements for architectural access than does the ADA, basic access to restrooms has always been... basic! McNeese State, as a public institution has had more than 30 years to respond appropriately to federal mandates for equal access for persons with disabilities. Moreover, it appears that McNeese has resorted to an Appeal to Spite in its denial of wrongdoing. Covington asserted that she was injured because the bathroom door was not in compliance with access requirements. McNeese responds that because Covington didn’t NEED to be in a wheelchair (an “iffy” assertion, at best), the fact that they failed to meet their 30+ year responsibility for access shouldn’t matter. Huh? Meantime, InsideHigherEd also seems to need a refresher course on disability law. The article states that, “The ADA, which applies some of its most stringent rules to public universities...” There is simply no basis for this bald statement unless the suggestion is that the Title II regulations (which apply to public entities of all kinds, including colleges and universities) are among the “most stringent rules” of the ADA. If that were the intent of the comment, it still misses the mark, as the requirements for architectural access (ADAAG) under discussion in this case appear in Title III of the ADA. While the letter of the law for both the ADA and Section 504 focuses on legal requirements for *access* to programs and facilities, the spirit of the law has always suggested that indepence, safety, and dignity are important issues in assessing how well those legal mandates for access are met. It would appear that McNeese State has lost sight of all three.

That's something, right?

Pedro Guzman sues government

From the AP story:

"I will never forget what Peter looked like when he finally returned to the U.S. — exhausted and in terrible shape," said Guzman's brother, Michael. "Peter's life is forever changed by what his government did to him."

His lawsuit, which seeks unspecified damages, was filed in federal court in Los Angeles by the American Civil Liberties Union on behalf of Guzman.

"Not only does Peter and his mother want some vindication, they want to make sure immigration officials understand they can't do this," said attorney Jim Brosnahan, who represents Guzman. "They should have apologized and said they would take steps to make sure this doesn't happen again."

A statement released by Immigration and Customs Enforcement, a branch of Homeland Security, called the incident a "one-of-a-kind case" and added more than 1 million illegal immigrants have been deported since the agency's inception.

See other posts on Guzman here and here.

Cross-posted at Alas, A Blog

Latimer paroled

Through the appeals process, the decision to deny Robert Latimer parole has been overturned:

After seven years in prison for killing his severely disabled daughter, Robert Latimer will be freed on day parole this week.

The appeal division of the National Parole Board this afternoon overturned a parole board decision last December that rejected Mr. Latimer's bid for parole.

The appeal division, following a month-long review, concluded Mr. Latimer does not in fact pose an undue risk to reoffend.

....

In its decision in December, a three-member panel of the parole board concluded: “You could not or would not describe the feelings or thoughts underlying your actions at the time of the offence.... You appear satisfied with the position that you and only you were able to determine her life or death, describing such decisions as beyond the law.”

The appeal division, however, found that although Mr. Latimer was at times unfocussed, he was not unwilling to answer their questions.

“The Appeal Division finds that the Board's determinations in this regard are unreasonable and unsupported. Your responses at the hearing reveal that you did in fact demonstrate insight and were able to explain why you decided to end the life of your daughter.

The appeal division has applied two conditions to his parole: Mr. Latimer cannot have responsibility for, or make decisions for, any individuals who are severely disabled.

See previous post on Latimer here.

Cross-posted at Alas, A Blog

Cop dumps quadriplegic man out of his wheechair

The story:

Police Suspended for Wheelchair Dumping

TAMPA, Fla. (AP) — Four Hillsborough County sheriff's deputies have been suspended after purposely tipping a quadriplegic man out of his wheelchair at a jail, authorities said Tuesday.

Orient Road Jail surveillance footage from Jan. 29 shows veteran deputy Charlette Marshall-Jones, 44, dumping Brian Sterner out of his wheelchair and searching him on the floor after he was brought in on a warrant after a traffic violation.

Sterner said when he was taken into a booking room and told to stand up, Jones grew agitated when he told her that he could not.

"She was irked that I wasn't complying to what she was telling me to do," he told The Tampa Tribune.

"It didn't register with her that she was asking me to do something I can't do."

Jones has been suspended without pay, and Sgt. Gary Hinson, 51, Cpl. Steven Dickey, 45 and Cpl. Decondra Williams, 36 have also been placed on administrative leave pending an investigation, sheriff's spokeswoman Debbie Carter said.

"The actions are indefensible at every level," Chief Deputy Jose Docobo said. "Based on what I saw, anything short of dismissal would be inappropriate."

He said the officers' actions were an aberration.

Yes, just another story documenting the callous abuse of power by law enforcement. Unbelieveable, but... not, right?

But it's also an example of how inept the media is at covering disability. The Associated Press headline: "Police suspended for wheelchair dumping"

"Wheelchair dumping" is ambiguous, obnoxiously imprecise, and goes for the shock value at the expense of even mentioning the victim involved. "Man dumped from wheelchair by cop" would have preserved the news shock value while also speaking the truth.

In any case, "wheelchair dump" has another meaning. "Dump" (also known as "rake" or "squeeze") refers to the seat angle on a wheelchair. To a seasoned wheelchair user, a story titled "wheelchair dumping" suggests discussion of the intricacies of butt comfort, balance, and leverage to push oneself. To a wheelchair user, the headline is not only insulting, it makes no sense.

The video of the abuse shows the police officer walking behind the man in the wheelchair and abruptly tipping the chair forward so the seat is at much more than a 45-degree angle from normal. Sterner attempts, briefly, to hold onto the arms before falling forward head first and landing hard on the floor. He is then rolled around on the floor and searched before being placed roughly back in his chair. The TV news report showing this video includes footage of Sterner outside, wearing sunglasses and using his arms and hands with some difficulty. He explains to the news camera that he has no feeling from the chest down and did not know at first how badly he was injured from the fall, but thought he might have broken some ribs.

Phoning It In

Last month, the state of Massachusetts issued a report on an August 2007 incident at one of the group homes of the Judge Rotenberg Center (JRC) where, on the basis of a phonecall, two boys were awakened in the night and repeatedly given electric shocks by the adults responsible for their care. If you're not already familiar with the JRC in Massachusetts or the aversive therapy used there on institutionalized disabled children, Mother Jones provides details in an article published this past September.

Eight states pay up to $200,000 per student, per year, to send otherwise "unplaceable" children with autism, psychological and behavioral disorders to the residential institution that uses aversive therapy to control many of its young inmates. Very generally, aversive therapy involves the use of a wide range of unpleasant stimuli to discourage specific behaviors. At JRC, aversives include electric shocks, food deprivation and isolation. On children.

The phonecall that led to the nighttime torture of the two boys turned out to be a prank. From the Boston Globe:

The report says none of the six staff members in a Stoughton residence run by the Judge Rotenberg Educational Center on the night of Aug. 26 acted to stop the harrowing events for three hours, despite ample reasons to doubt the validity of the caller's instructions to wake the boys in the middle of the night and administer painful shock treatments, at times while their arms and legs were bound.

The caller said he was ordering the punishments because the teenagers had misbehaved earlier in the evening, but none of the home's staff had witnessed the behavior that the caller cited. As the two boys' screams could be heard throughout the house, near-mutiny erupted among the other boys, who insisted that the accused teenagers had violated no rules. One boy even suggested the call was a hoax, according to the report by the Massachusetts Department of Early Education and Care, which licenses group homes.

The staffers, inexperienced and overworked, were described as concerned and reluctant, yet nobody verified the orders with central office, nor did anybody check treatment plans for the two teenagers to be sure they were permitted to receive that degree of shock therapy.

The damage was done before the staff at the JRC realized their "error":

By the time a call was finally placed to the central office and staff members realized their mistake, one teenager had received 77 shocks, well in excess of what his treatment plan allowed, and the other received 29. One boy was taken to the hospital for treatment of two first-degree burns.

The full account described by the Boston Globe is harrowing and beyond awful. The result of the state report is the suspension of seven JRC employees. But what I find telling is that because of the state investigation the following changes are supposedly being implemented at the JRC:

• Expanded training for staff -- Many of the suspended employees had been working at the JRC for less than three months at the time of the August incident. High employee turnover is also suggested by Google search of the center, which pops up numerous ads for employment.
• Institution of new telephone verification procedures -- Electric shock orders via telephone will continue to be part of the official procedure of aversive therapy, as is the incredibly extensive video surveillance of every moment of inmates' lives.
• Elimination of delayed punishment -- On its own, prior to this incident, awakening inmates through administration of electric shock was not a violation of procedure? Children were routinely hooked up to shock equipment even while they tried to sleep, apparently.
  

Supporters of JRC and its aversive therapy say it effectively changes behavior. Of course it does. Extended torture with no end in sight tends to do that. One of the axioms of torture is that anyone can be broken, given time and cruel enough methods. There are some inmates of JRC receiving electric shock that have been there for decades.

This post is part of a Blogging Against Aversives event. You can find links to writing from other bloggers on the topic here. Or check out Amanda Baggs' extensive and well-indexed writing on aversives, behavior modification, JRC, and other related topics at Ballastexistenz. This post of Amanda's is especially informative. Feel free to add links of other writings on this in comments.

Cross-posted at Alas, A Blog

Prison suicides and mental illness

Piggybacking on Amp's report of recent NYT statistics on prisons and prisoners in the U.S. is the news that prisoner suicides in Massachusetts state prisons are nearly triple the rate in other states. From the first part of a three-part series in The Boston Globe:

Last year alone, seven inmates killed themselves, and another's attempt left him brain dead; four have taken their lives so far this year.

Department of Correction officials say the suicides are random and unrelated. But a Globe Spotlight Team investigation of the deaths and detailed reconstruction of how they occurred found that they were far from random.

Most of the suicides came after careless errors and dangerous decisions by correction officials and the staff at UMass Correctional Health. And the trail of violence is far wider than the number of dead would indicate, as hundreds more inmates each year have wounded themselves or attempted suicide.

In fact, such incidents are soaring.

So common has it been to find a man with a makeshift noose around his neck that some correction officers have taken to carrying their own pocket tools to cut them down. The tally of suicide attempts and self-inflicted injuries - 513 last year and more than 3,200 over the past decade - tells a story of deepening mental illness and misery behind the walls of the state's prisons, despite repeated calls for better training of officers and safer cells for mentally troubled inmates.

The entire series is here.

h/t to Liz at The Trouble with Spikol

Cross-posted at Alas, A Blog

Robert Latimer denied parole

Yesterday, a Canadian parole board in a prison near Victoria denied day parole to Robert Latimer. Latimer is the Saskatchewan farmer serving a life sentence for the second-degree murder of his 12-year-old disabled daughter back in 1993.

Some facts: Tracy Latimer acquired cerebral palsy from oxygen deprivation at birth. She was unable to walk or talk and had seizures every day, but she could smile, laugh and cry. She went to school each day on a bus, she could communicate likes and dislikes. She recognized the people she loved. Tracy had several surgeries and was scheduled for a fourth on the day of her death. (The back surgery she had to correct scoliosis and the complication afterward of a steel bar migrating in her hip sound identical to my own Harrington rod surgery experiences.)

On October 24, 1993, Robert Latimer placed his daughter, Tracy, in the cab of his pickup truck, connected a hose to the exhaust, ran the hose in the vehicle's window and gassed his daughter to death. He hid the evidence and lied about her death until an autopsy revealed foul play. Then he confessed.

But he has never expressed remorse, which is why he was denied parole:

The parole board decided the 54-year-old Saskatchewan farmer had not developed any insight into his crime. Latimer insisted during his parole hearing Wednesday that killing Tracy was the right thing to do.

He remained unapologetic and angry at the legal system.

"The laws are not as important as Tracy was," he said.

"I still feel don't feel guilty because I still feel it was the best thing to do."

While there's always been a frightening and enraging degree of support for Latimer's actions (which, interestingly, played out while Susan Smith was simultaneously being castigated for the murder of her nondisabled children in the U.S.), much of the fervor has been about the mandatory sentencing that required him to serve at least ten years in prison. The Canadian Supreme Court overturned a lighter sentence that failed to follow sentencing guidelines. He's currently spent seven years in jail.

In an appeal to his conviction, Latimer contended that he "had the legal right to decide to commit suicide for his daughter by virtue of her complete lack of physical and intellectual abilities."

Grant Mitchell, a lawyer representing disability groups in relation to the case, said yesterday:

"I think it's really sad that he's still maintaining that he committed no crime ... that killing a member of his family was a private matter that the public had no business getting involved in. And I think it's particularly concerning that when he was asked by the Parole Board whether he would do the same thing if another member of his family were in distress, he said he wasn't sure what he would do."

I agree with Mitchell. More importantly, I agree with the guilty verdict that holds Latimer accountable for murdering his daughter. I am less certain how much time in prison is appropriate, but since Latimer reportedly wished to use his day parole to spend time furthering the cause of euthanasia, I'm content that he remains in jail.

Cross-posted at Alas, A Blog

Got access?

Cilla Sluga at Big Noise and Justice for All blog have both written recently about an ad for Accessible Cities Alliance that appeared in the Herald News in Joliet, Illinois. The intent of the ACA is to "promote disability compliance in the business community," and to that end, the ad pictures four older white guys -- business leaders in the Joliet community -- using assistive equipment they don't actually need.

The ad's text reads (click on the photo of the ad to enlarge it):

Got Access?
We do. You should, too.
By 2010, it's likely that one in three Americans will have a disability.
That's a lot of purchasing power! Is your business ready?

We encourage business owners and property managers to create and promote full access for consumers with disabilities. What does this mean? It means providing equal access to parking, entrance, goods and services and restrooms. Consider how you can increase the value of your business and expand your customer base.

The Accessible Cities Alliance is a broad coalition of local leaders and disability advocates working to create access and opportunity. ACA offers valuable information and resources. If you need assistance, let us help. If you offer full access, let us know, and then make sure your customers know, too!

Good access is good business.

Accessible Cities Alliance
Promoting disability compliance in the business community.

www.ada.411.com
815-729-0162 v
815-729-2085 tty

A message sponsored by The Herald News

The discussion at Big Noise and Justice for All has been concerning the use of nondisabled men with props suggesting their status as disabled -- or future disabled people. Cilla says:

None of the people pictured have a disability in the picture. The guy with the white cane is sighted; the guy in the wheelchair and the one using the walker are ambulatory without assistance; the guy using the TTY does not have difficulty using the phone. They are local politicians who should fire their campaign managers for bad judgment.

Who thought it would be a good idea to have able-bodied people representing someone with a disability?

She also notes that they are all white men of about age sixty -- a fairly limiting representation of "access for all."

Comments at both blogs raise the key arguments surrounding honest and real representation: This tactic would be obviously inappropriate for messages about other minority groups. (Though, remember this German Unicef ad using white kids in blackface to promote help for African children?) The men depicted may have invisible disabilities -- you cannot assume they are nondisabled. The purpose of the campaign is to show how permeable (and growing) the disability category is. Disability simulations are ultimately destructive and do little to really show what the disability experience entails. The ad means well, wants to help, and these men aren't actors paid to fake disability.

I think the most important point to be made about this ad is that it never mentions that businesses need to comply with the law. It never mentions that there are state and federal laws requiring what the ad cajolingly promotes. It never offers information in compliance. It never notes that failing to promote accessibility through accessible parking, entrances, goods and services and restrooms is illegal.

I'm all for voluntary compliance, but shouldn't the smart business sense the ad hopes to appeal to also consider complying with the law?

ADA Restoration Act

The ADA Restoration Act is designed to clarify who the 1990 Americans with Disabilities Act applies to in order to protect against the increasingly narrow application of the law as interpreted by the courts, particularly the U.S. Supreme Court. Tomorrow (Thursday, Nov. 15) is a day of action and support for the ADA Restoration Act as the Road to Freedom Bus, which has toured around the country to bring awareness, returns to Washington, D.C. Info on the day's events are here.

The ADA Restoration Act is meant to prevent cases like that of diabetic Stephen Orr, who was fired from his Wal-Mart pharmacy job in Nebraska for taking 30-minute lunch breaks to help maintain his insulin level. His boss told him he was fired for his disability, but a judge ruled that because diabetes can be managed with insulin, Orr did not qualify as disabled under the ADA. Another example of the courts limiting the application of the law beyond all logic was last May's ruling by the Eleventh Circuit that "mental retardation" is not a disability under the ADA.

As Mark Siegel of The 19th Floor notes in commentary at BBC's Ouch!:

This kind of strained reasoning is indicative of society's misguided impulse to assess disability on the basis of, dare I say, freakishness. People in wheelchairs, people who are blind or deaf, people who talk to the voices in their heads; their obvious otherness makes it so easy for society to label these people as disabled. But when the distinction isn't as apparent, as is the case with most hidden disabilities, we become much more diffident. The legalistic notion that this person or that person isn't "disabled enough" is not so different from whistling while passing the graveyard; it allows us to ignore some uncomfortable truths. It allows us to ignore the fact that many perfectly normal-looking people can have significant impairments that can dramatically affect one's life. It allows us to ignore the fact that the gulf between disability and so-called "normalcy" isn't as wide as we might imagine (or hope).

The notion that some disabilities can be made to simply go away is a fiction and almost childish in the wishfulness it conveys. Diabetes can be managed with drugs in the same way my condition can be managed with a wheelchair. But in both cases, the underlying impairments and their complicating factors remain. The person with diabetes just looks more able-bodied. And in this culture, looks are everything.

Truthfully, the entire focus upon membership in the disabled class is a deeply flawed way of protecting against discrimination in the first place. It feeds upon a mythical, binary idea of "able" and "unable". A persistence in judging the plaintiff first before ever looking at the actions and motives of the defendants encourages the persistence of the medical model where the ultimate fault of any discriminatory situation depends on medical diagnosis.

But. This Restoration Act is a vital step in the right direction. The Senate hearing on the Act happens at 2 p.m. on Thursday and there are still a few hours to urge your representatives to support the act. Info on exactly what to say, if that helps you, is available here.

Other related links:
Reunify Gally's Restoration Act coverage (the blog's title refers to the need for unity at Gallaudet University)

Ian Johnson on the "token representation" in the ADA

The Road to Freedom blog coverage of the bus tour around the country

A photo gallery of the bus tour and the events the tour was a part of

The ADA Restoration Act of 2007 blog by the AAPD (American Association of People with Disabilities) -- includes links to the full texts of the act from both Congressional houses, a list of Congressional sponsors, talking points for the act, real case stories and a history of relevant court cases

Designer Babies and the Pro-Choice Movement

I'm suffering from Acute Blogging Malaise. So, I'll just post the link to this article and hope to say something relevant in comments if discussion on it erupts.

"Designer Babies and the Pro-Choice Movement" by Rebecca Tuhus-Dubrow in the current Dissent. A few excerpts:

In vitro fertilization (IVF) does not merely help the infertile to procreate; increasingly, it allows parents to determine the genetic makeup of their offspring. Initially, preimplantation genetic diagnosis (PGD) targeted severe childhood diseases, such as Tay-Sachs and sickle cell anemia. Now, more parents use it to screen out genes for late-onset, treatable diseases, such as colon cancer; sex selection is also popular. According to a 2006 survey conducted by the Genetics and Public Policy Center at Johns Hopkins University, 42 percent of 137 IVF-PGD clinics allowed parents to select for gender. Scientists predict that parents will be able to choose such characteristics as blue eyes or curly hair. Less certain, but plausible, is that scientists will be able to identify genes for more complex traits, such as intelligence and homosexuality. Genetic engineering, which will enable not merely the selection but the insertion of desired genes, is on the horizon. In the United States, this rapidly advancing technology is unchecked by any regulatory mechanism.

and

Even without the borrowed buzzwords, the pro-choice movement would be uneasily close to the issue. Historically, pro-choice arguments have focused on the right to privacy and freedom from government interference. Legally, those are the terms that define reproductive rights. The landmark Supreme Court cases Connecticut v. Griswold (1965) and Roe v. Wade (1973) recognized the right of individuals to control their reproductive destinies. Legal scholars predict that when the question of selecting the traits of offspring inevitably arrives in court, it will be considered in this framework.

Like it or not, pro-choice groups, then, will be compelled to take a stand. They will have to distinguish their concept of reproductive rights from that advanced by neo-eugenicists and to decide whether and how to endorse regulation of reproductive technologies without jeopardizing already tenuous rights. But along with these challenges come opportunities. By incorporating concerns about the abuse of reproductive technologies into a pro-choice platform, the movement can shift away from an individual-liberties paradigm toward a social justice orientation; move away from a single-issue focus on abortion toward a more comprehensive agenda; and form coalitions with other segments of the left.

and, although race, class and GLBT issues related to choice are prominently covered, the only explicit mention of disability and disability rights activists is bolded below:

This issue creates strange bedmates. The common political assumption is that conservatives would oppose the potentially radical change promised by reprogenetic technologies, while liberals would embrace the scientific progress they represent. And indeed, the religious right, concerned about the embryo and the blasphemy of playing God, condemns them, while some liberals are more inclined to welcome them on the grounds of “progress”—and, perhaps, in opposition to “culture of life” priorities. At the same time, economic libertarians oppose regulation of this three-billion-dollar-a-year industry, and a fringe of neo-eugenicists wants to create a super race. Qualms on the left include the potential exacerbation of inequalities, the eugenic overtones, and the environmental implications of meddling with nature.

Other progressive contingents have their worries. Disability activists are wary of technologies that essentially aim to eliminate their community. Gay and lesbian people have an especially complex relationship to assisted reproductive technology. I spoke to staff at the GLBT (Gay, Lesbian, Bisexual and Trans-gendered) Community Center in New York, who said that to the extent that it helps them have genetically related families, they welcome the technology. But if a “gay gene” is ever identified, their communities, too, could be threatened. Many feminists are troubled by sex selection, but fear that regulating any aspect of reproduction could jeopardize abortion rights.

Go over and read the whole article here.

I think it's safe to say. . .

that folks in wheelchairs have the edge in creating successful sit-in protests. Not that it's all about sitting around, but we do bring extra immovable objects with us everywhere we go. Immovable if we choose to make them immovable, that is.

This post is to notify feed readers of updates to the post just below on the ADAPT actions this week in Chicago. Specifically, the local Chicago TV news coverage links at the bottom of that post should be easier to access now.

Here's another video, this one from Chicago's Fox TV on Tuesday's protest and blockade of the Thompson Center.

The image above is another photo from Tim Wheat, showing dozens of people in wheelchairs filling a city sidewalk and the entrances to the offices of the American Federation of State, County and Municipal Employees (AFSCME), a union that persists in putting their members' incomes above the freedom of the disabled people housed in the institutions they serve. You can read Tim Wheat's diary of Wednesday's events at the ADAPT site.

Also check out the blog coverage of Galen Smith, an activist at his first ADAPT actions. He writes of Wednesday's action against the union:

We got periodic updates from our negotiators and learned that it was not going well. First AFSCME tried to counter the letter we gave them with a letter of their own. They expected us to sign a letter saying that nursing homes should stay open!! Then they said they would call their national office. Eventually they left the table and said they weren't coming back. When negotiations broke down the police moved in to start arrests.

AFSCME had 120 ADAPTers arrested today - for picketing. The irony was not lost on us as we chanted...

The People United Will Never Be Defeated!

...a chant that has long been used by striking unions.

The arrest process extremely relaxed. An officer approached me where I was standing blocking the alley and warned me that if I didn't move I would be arrested. I didn't move. Then he told me to follow the line of people heading for arrest. There was no police escort as we walked about a block and a half to line up on a sidewalk and wait for our citations. ADAPTers chatted with the officers as they wrote up our citations who laughed and joked with us. When the officer handed me my ticket he smiled and said, "You've been very bad. Here's your ticket" as he patted me on the shoulder and sent me on my way with a chuckle.

Updated: ADAPT action in Chicago

"Individually, no one's more invisible
than a person in a wheelchair.
Collectively they're pretty spectacular."
Source

How totally exciting and energizing is this?









Image descriptions: The four photos taken by Tim Wheat are part of ADAPT's coverage of the week's events here. The first is of Marca Bristo, CEO of Chicago's Access Living (the ILC) and former chairperson of the National Council on Disability, in a power wheelchair holding a Chicago Sun-Times newspaper layout of coverage from a 1992 protest where the large headline reads "Disabled take home-care protest to AMA's doorstep." She sits next to Laura Hershey, Denver writer of Crip Commentary, also in a power wheelchair outside the American Medical Association's headquarters in this 2007 protest.

The second photo is inside a building, taken from above, showing a half dozen activists blockading the entrance. Some people are sitting in power wheelchairs and scooters, many wear ADAPT t-shirts.

The third photo is outside the AMA headquarters. A woman is writing "Community Choice" on a large glass window with a red paint marker and activists are visible lining the outside of the building along the glass in the background. The Community Choice Act, Senate Bill S. 799 and House Bill H.R. 1621, seeks to break the institutional bias by using existing funding that now pays for nursing home coverage to provide the choice of community-based services instead.

The fourth photo shows a man, surrounded by other wheelchair users, chanting or hollering. In comments below, it's suggested he's also signing as he chants. Perhaps the sign for "Now."

From ABC Chicago channel 7: "Disability activists wrap up week of Chicago protests" (video at link too):

September 12, 2007 (CHICAGO) - Hundreds of activists for the disabled protested again Wednesday in downtown Chicago, demanding better housing conditions. They are angry with Illinois government officials for spending too much money sending the disabled to nursing homes.

Wednesday was the last day of what Adapt calls its fall action. The disability rights group has targeted medical and governmental agencies since Monday in its push for access to more community-based services.

Hundreds of members led a vocal call for change to the system that they say gives them only one option - care in an institution.

Members of Adapt parked their wheelchairs in front of the Chicago headquarters of the American Federation of State, County and Municipal Employees Union, at 29 N. Wacker.

They blocked the entrances and crowded into the lobby in a demonstration over housing options for people with disabilities.

"Everyone deserves a choice and right now, choices don't exist," said Gary Arnold of Adapt. "It's institutions or nursing homes or nothing for thousands of people."

Adapt is fighting for the Community Choice Act, a bill introduced to Congress earlier this year. It would allow patients with disabilities to access care in and around their homes, rather than rely on care from a nursing home.

Chicago's WGN covered the week's activities in video. The three individual clips cover the protest at the headquarters of the AMA and the shutdown of the Thompson Center. Here, here and here. Those links should work (for me, each opens three windows: the main WGN page, a WGN video troubleshooting page and the actual news video in Windows Media Player, preceded by a 20-second ad). Let me know if that doesn't work for you, please.

Update: I've added some info about the people in the above photos to the in-text image descriptions since commenters have helpfully identified the activists. Also, the links to WGN videos just above should now be a little easier to access, thanks to Stephen Drake of NDY (Check the Not Dead Yet blog for day-by-day coverage of the events and additional photos. Steve has been my source for all the links in this post, along with ADAPT itself.)

On Ruben Navarro

If you read just one thing this week about disability in America, read this.

I briefly mentioned Navarro's case here but the above link has important and better detail than the news story I linked to.

Pedro Guzman found

From the AP report:

LOS ANGELES – A U.S. citizen who was wrongly deported in May was found at a border crossing over the weekend and was expected to be reunited with his family Tuesday, according to an American Civil Liberties Union spokesman.

Superior Court Judge Carlos Chung ordered Pedro Guzman's release at a hearing Tuesday morning in Lancaster. Guzman, 29, was expected to rejoin his family later in the day, according to ACLU Southern California spokesman Michael Soller.

Guzman, who lives in Lancaster, had been in Los Angeles County sheriff's custody since being detained over the weekend in Calexico, just across the border from Mexicali, Mexico.

Lawyers for Guzman told ACLU officials that the he appeared traumatized and exhausted from his nearly three months living on the streets in Mexico.

“I think he's in fairly rocky physical shape,” said Celeste Durant, a spokeswoman for the group.

Photo description: A head-and-shoulders color photo of Pedro Guzman, apparently cropped from a family photo as there is part of a torso of someone else visible standing behind him.

(Yeah, yeah, I'm still on my blogging break, but I've checked and rechecked for good news with this story for so long now, I'm excited to share it here.)

Update 8/11: Nezua at The Unapologetic Mexican writes on Guzman's tragic adventures. Also, this news story via his coverage:

[Guzman] ate out of garbage cans, bathed in rivers and was repeatedly turned away by US border agents when he tried to return to California, his family said.

Pedro Guzman, 29, was picked up at the Calexico border crossing over the weekend and released to his family yesterday.

Guzman was shaking, stuttering and appeared traumatized, his family said at a news conference. The family said it planned to seek medical attention for Guzman, who was not at the news conference.

"They took him whole, but only returned half of him to me," his mother, Maria Carbajal, said in Spanish while crying. "The government is responsible for this." The family had been searching for Guzman in Tijuana since he was deported May 11.

They said Guzman told them yesterday that he had tried to return to the United States several times but was turned away. He walked more than 160km to Calexico, the family said.

Doctor murders disabled man to harvest organs

This story comes out of central California:

San Luis Obispo County prosecutors have charged a transplant surgeon with prescribing excessive drugs to a disabled patient to hasten his death and harvest his organs.

Here are the Facts First:

Ruben Navarro of San Luis Obispo was admitted to Sierra Vista Regional Medical Center on January 29th, 2006.

The 26-year-old was placed on life support and identified as a potential organ donor.

In February, California transplant donor network Doctor Hootan Roozrokh came to San Luis Obispo to procure Navarro's organs.

The San Francisco surgeon is facing three separate felony charges in connection with the death of Rueben Navarro.

Navarro was a patient of a local skilled nursing facility when he suffered respiratory and cardiac arrest.

He was taken to Sierra Vista Regional Medical Center where doctors determined he had minimal brain function.

However, he was not declared brain dead.

The San Luis Obispo County district attorney's office alleges that when Dr. Roozrokh arrived at Sierra Vista he gave Navarro medications including morphine and Ativan to speed up his death.

I hear this story will be covered on CNN's Nancy Grace show this evening. (Update: Show transcript is here.)

Note that my headline above is not what the news link declares. The criminal charges against the doctor currently include "mistreatment of a dependent, severely disabled adult" and "administering a harmful substance and unlawful controlled substance prescription." But really, the sum of and point of the charges is that the man was killed so the transplant surgery could begin.

Here's a link to a UC-Berkeley site called Organs Watch that tracks worldwide trafficking and abuse.

Happy 17, ADA!

Today, July 26, is the 17th anniversary of the signing of the Americans with Disabilities Act. Here's a photo of the historic event, showing President George H. W. Bush signing the bill into law with Evan Kemp, then-Chairman of the Equal Opportunity Employment Commission, at Bush's right and Justin Dart, then-Chairman of the President's Committee on Employment of People with Disabilities, (in the hat) at Bush's left. Both men have died, but they were instrumental in creating this law protecting our rights. Standing behind Kemp is the Rev. Harold Wilke (left) and Sandra Swift Parrino, Chairperson, National Council on Disability (right).

Veterans sue U.S. government

On Monday, two veterans' organizations filed a nationwide class-action suit against the U.S. Department of Veteran Affairs (VA) for failure to help thousands of post-9/11 war veterans with post-traumatic stress disorder.

... Of the 1,400 VA hospitals and clinics scattered across the United States, only 27 have inpatient programmes for PTSD. This despite the fact that an estimated 38 percent of soldiers and 50 percent of National Guard who have served in Iraq or Afghanistan report mental health issues ranging from post-combat stress to brain injuries.

The VA also has a backlog of over 600,000 disability claims, and the average Iraq war veteran who files for disability must wait six months for an answer. If he or she files an appeal, it could take up to three years.

In the late '80s, I recall that homeless men in American cities were so often mentally ill Vietnam vets that it was practically an urban cliché. It seems we're heading down that same road again:

In their lawsuit, the veterans groups ask the federal courts to force the VA to clear the backlog of disability claims and make sure returning veterans receive immediate medical and psychological help. They also want the judge to force the VA to screen all vets returning from combat to identify those at greatest risk for PTSD and suicide.

An estimated 400,000 veterans sleep homeless on the streets of the United States. The VA estimates 1,000 former servicemembers under its care commit suicide every year.

Cross-posted at Echidne of the Snakes