Showing posts with label news. Show all posts

Independence Day For Americans With Disabilities

By Linton Weeks
On July 4, America will celebrate 239 years of independence.
Later in the month, our country will mark another historic moment: the 25th anniversary of the Americans with Disabilities Act, a law passed on July 26, 1990, that guarantees certain rights — and increased independence — to our compatriots with physical and intellectual disabilities.
In this era of ramps and lifts and other hallmarks of accessible design, it's sometimes hard to remember that not too long ago inaccessibility was the norm. And barriers abounded.
"At the time of the late 1980s, too many people with disabilities were out of sight and out of the minds of the general public," says Katy Neas of Easter Seals, a century-old, Chicago-based nonprofit organization that helps people with disabilities.
As an outspoken advocate for the ADA, Easter Seals created a series of powerful posters that illustrated the dilemmas — and desires — of disabled Americans and helped the country understand the reasons for, and responsibilities resulting from, the anti-discrimination legislation.
Via the visuals, Neas says, "Easter Seals was working to reposition what it meant to be a person with a disability — what was possible, what was necessary, what barriers existed."...
Get the full story at NPR.
http://www.npr.org/sections/npr-history-dept/2015/06/19/415436391/independence-day-for-americans-with-disabilities

The Medical Bill Mystery

By Elisabeth Rosenthal

I CONFESS I filed this column several weeks late in large part because I had hoped first to figure out a medical bill whose serial iterations have been arriving monthly like clockwork for half a year.

As medical bills go, it’s not very big: $225, from a laboratory. But I don’t really want to pay it until I understand what it’s for. It’s not that the bill contains no information — there is lots of it. Test codes: 105, 127, 164, to name a few. CPT codes: 87481, 87491, 87798 and others. It tells me I’m being billed $29.90 for each of nine things, but there is an “adjustment” to one of $14.20.

At first, I left messages on the lab’s billing office voice mail asking for an explanation. A few months ago, when someone finally called back, she said she could not tell me what the codes were for because that would violate patient privacy. After I pointed out that I was the patient in question, she said, politely: “I’m sorry, this is what I’m told, and I don’t want to lose my job.”

I have spent the last two and a half years reporting and writing about medical costs, and during that time I have pored over hundreds of patients’ bills. And while I’ve become pretty adept at medical bill exegesis, I continue to be baffled by how we’ve come to tolerate the Kafkaesque stream of nonexplanations that follow health encounters

Bills variously use CPT, HCPCS or ICD-9 codes (more about those later). Some have abbreviations and scientific terms that you need a medical dictionary or a graduate degree to comprehend. Some have no information at all. Heather Pearce of Seattle told me how she’d recently received a $45,000 hospital bill with the explanation “miscellaneous.”

Are there no standards or regulations governing medical billing? Even my receipts from the dry cleaner say things like “sweater blue — $7.” The supermarket tells me I’ve paid $2 for 1.3 pounds of gala apples.

“Medical bills and explanation of benefits are undecipherable and incomprehensible even for experts to understand, and the law is very forgiving about that,” said Mark Hall, a professor of health law at Wake Forest University. “We’ve not seen a lot of pressure to standardize medical billing, but there’s certainly a need.”

Hospitals and medical clinics, for their part, often counter by saying that detailed bills are simply too complicated for patients and that they provide the information required by insurers. But with rising copays and deductibles, patients are shouldering an increasing burden. And if providers of Lasik and plastic surgeons can come up with clear prices and payment terms, why can’t others in medicine?

In other industries, lawmakers have swooped in to end unscrupulous practices. The 1968 Truth in Lending Act required clearer terms in writing loans and offering credit. After the housing crisis, the 2009 Mortgage Disclosure Improvement Act demanded that lenders provide clear and consistent information to home buyers. The idea was to protect buyers from being seduced by low-interest teaser rates that would jump dramatically a few years later, for example.

But, Mr. Hall said, such legislation applies only to specific sectors: “There is no general law that says bills must be clear and there are no rules about which can be reported to credit agencies. I think bills are transparent at the grocery not because there’s a law, but because that’s what customers expect.”

Christina LaMontagne, vice president in charge of health at NerdWallet, a consumer financial services company that offers medical bill audits, educational tools and experts to talk patients through their bills, said, “The idea that consumers want user-friendly explanations is exactly the issue.”...

Get the full story at The New York Times.

http://www.nytimes.com/2015/05/03/sunday-review/the-medical-bill-mystery.html?ref=topics


Researchers develop world's first thought-based 'brain-to-text' system

By HealthInnovations

Speech is produced in the human cerebral cortex and previous studies have shown that the brain waves associated with speech processes can be directly recorded with electrodes located on the surface of the cortex. Now, researchers from the KIT and Wadsworth Center have shown for the first time that is possible to reconstruct basic units, words, and complete sentences of continuous speech from these brain waves and to generate the corresponding text.  In effect the team have developed the world’s first working ‘Brain-to-Text’ system.  The study is published in the journal Frontiers in Neuroscience.
The researchers state that it has long been speculated whether humans may communicate with machines via brain activity alone.  As a major step in this direction, the current study’s results indicate that both single units in terms of speech sounds as well as continuously spoken sentences can be recognized from brain activity.
In the current study the brain activity was recorded from 7 epileptic patients, who participated voluntarily in the study during their clinical treatments. An electrode array was placed on the surface of the cerebral cortex (electrocorticography (ECoG)) for their neurological treatment. While patients read aloud sample texts, the ECoG signals were recorded with high resolution in time and space. Later on, the researchers analyzed the data to develop Brain-to-Text...
Read the full story at Health Innovations.
http://health-innovations.org/2015/06/19/researchers-develop-worlds-first-thought-based-brain-to-text-system/

Doctors told this girl to stop Googling her symptoms. Now they're Googling malpractice lawyers.

By Matt Nedostup

Bronte Doyne was 19 when she died on March 23, 2013. Only 16 months before, the Nottingham, UK teenager had complained about severe stomach pains. But her doctors wouldn't take her claims seriously.
Initially, she was diagnosed with appendicitis. Eventually, that diagnosis changed. It turned out she was afflicted with fibrolamellar hepatocellular carcinoma, an extremely rare cancer that only affects 200 people a year in the entire world.
Doctors operated, and told Bronte that she would be fine. That didn't put her mind at ease. She researched her disease online, and found that it had a high rate of recurrence. She brought this up to her doctors at Nottingham University Hospitals NHS Trust, who dismissed it. They told her to "stop Googling" her symptoms. In one case, she was denied treatment at a hospital, even though she was there on her general practitioner's recommendation...
Access the full story at someecards.

http://happyplace.someecards.com/scary-medicine/doctors-told-this-girl-she-was-fine-and-she-should-stop-googling-her-symptoms-then-she-died/

Skyrocketing drug prices leave cures out of reach for some patients


             By Liz Szabo

Sophisticated drugs are opening the door, scientists say, to an era of "precision medicine."
They're also ushering in an age of astronomical prices.
New cancer drugs are routinely priced at more than $100,000 a year — nearly twice the average household income.
Experimental cholesterol drugs — widely predicted to be approved this summer — could cost $10,000 a year
A drug for a subset of people of cystic fibrosis, a lung disease that kills most patients by their early 40s, commands more than $300,000 a year.
Even with insurance, patients might pay thousands of dollars a month out of pocket.
For many people, care for cancer and other serious diseases is "a doorway to bankruptcy or poverty," said Timothy Turnham, executive director of the Melanoma Research Foundation. "It's a tremendous economic burden."
But patients aren't the only ones paying.
Taxpayers underwrite the cost of prescription drugs provided by Medicare, Medicaid and other public insurance programs.
Spending on prescription drugs last year reached a record-breaking $374 billion, up 13% from 2013, with the largest percentage increase in more than a decade, said Clare Krusing, spokeswoman for America's Health Insurance Plans. Almost half of that increase came from drugs launched in the past two years.
Some of the most expensive medications are "breakthrough" drugs, which are fast tracked by the Food and Drug Administration because of their potential to fill an unmet need, she said. Over the next decade, just 10 of these breakthrough drugs will cost the government nearly $50 billion.
People with private insurance could find themselves paying more out-of-pocket for health care if insurers raise premiums to cover their costs, Krusing said.
    "We're spending money we cannot afford," said Leonard Saltz, chief of gastrointestinal oncology at New York's Memorial Sloan Kettering Cancer Center.
    Yet Saltz said he can't deny that some new drugs are game changers.
    "I want these drugs and drugs like them available for my patients," Saltz said.
    The cystic fibrosis drug, Kalydeco, has changed 33-year-old Emily Schaller's life. Before Kalydeco, Schaller was hospitalized for lung infections two to three times a year. Since beginning the drug five years ago, through a clinical trial, she's been hospitalized twice. Schaller, who lives in Detroit, receives Kalydeco through Michigan's state-run health insurance program.
    "It's a miracle drug," Schaller said. "I'm now planning a retirement fund, which is something I never thought would need."
    Yet miracles remain out of reach for many.
    Even patients with insurance can have trouble affording their medication, Saltz said. Many insurance plans require patients to pay 20% of their prescription drug costs.
    Some cancer patients have begun rationing their pills to reduce costs, taking them every two days instead of daily, said Ronan Kelly, an assistant professor of oncology at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore.
    "If we don't get some sanity in these drug prices, more people will die from cancer because no one will be able to afford them," said Saltz, who addressed high drug prices at a meeting of the American Society of Clinical Oncology.

    Access the full article at USA Today.
    http://www.usatoday.com/story/news/2015/06/14/rising-drug-prices/71077100/

    Researchers begin to map sensory over-responsivity in autistic children and adolescents


    by Health Innovations
    Using functional magnetic resonance imaging, a team of UCLA researchers have shown for the first time that children with autism spectrum disorder (ASD) who are overly sensitive to sensory stimuli have brains that react differently than those with the disorder who don’t respond so severely to noises, visual stimulation and physical contact.
    The team state that the findings could lead to the development of interventions that can help the more than 50 percent of individuals with ASD who have very strong negative responses to sensory stimuli, a condition called sensory over-responsivity (SOR). Interventions for this condition could significantly improve the lives of children with this form of ASD and their families.  The opensource study is published in the journal JAMA Psychiatry.
    The researchers explain that this condition is distressing and impairing for individuals on the autism spectrum, as well as for their parents, who often feel confined to their homes because it’s too difficult to take their children out shopping, to the movies or to a restaurant.  They go on to add that their research provides new insights into the brain differences that may cause sensory over-responsivity, which brings understanding how to treat it, from simple interventions like limiting exposure to multiple sensory stimuli to more complex interventions like cognitive-behavioural therapy.
    Previous studies show that ASD is a developmental disability that can cause significant social, communication and behavioural challenges. It occurs in all racial, ethnic and socioeconomic groups, but is almost five times more common among boys than among girls. The Centers for Disease Control estimates that about one in 68 children have been identified with autism spectrum disorder.
    The teams note that research on SOR, and particularly brain imaging research, is still very new and sensory symptoms were only recently added to the diagnostic criteria for ASD, two developments which may ultimately lead to clues as to why these children have such strong reactions to sensory stimuli...
    Access the full story at Health Innovations.
    http://health-innovations.org/2015/06/12/researchers-begin-to-map-sensory-over-responsivity-in-autistic-children-and-adolescents/
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    Nevada GOP congressman: My kids ‘will not be a drain on society’ like disabled children




    By David Edwards at Raw Story

    Rep. Cresent Hardy (R-NV) said recently at a Libertarian Party event that he hoped his children would never be a “drain on society” like people who were disabled.
    In audio published this week by the Nevada State Democratic Party, Hardy can be heard speaking to attendees at the Libertarian Political Expo in Las Vegas.
    “I have three children,” Hardy explains. “One of them is summa cum laude and two were magna cum laude. The other one, he didn’t need an education. He works for Raytheon, smarter than all the rest. He works hard, he builds things that are genius. Some people have that ability.”
    “But they all work hard. They are raising their own families,” he continued. “They will not be a drain on society, the best they can. Hopefully they will never have some disability that causes them to have to utilize that.”...
    Read the full article and access the audio at Raw Story.
    http://www.rawstory.com/2015/06/nevada-gop-congressman-my-kids-will-not-be-a-drain-on-society-like-disabled-children/

    Use of police cells during mental health crises to be halved

    • The Guardian

    • The number of times police cells are used as a place of safety for people having a mental health crisis is intended to be halved under a far-reaching agreement between police, mental health trusts and paramedics.

    • The "crisis care concordat" signed by 22 national organisations, including the Department of Health, the Home Office and the charity Mind, is aimed at securing dramatic improvements in the treatment of people having a mental heath crisis.

    • The concordat suggests that health-based places of safety and beds should be available all the time. It says police custody should not be used because mental health services are not available, and police cars and other vehicles should not be used as ambulances to transfer patients. "We want to see the number of occasions police cells are used as a place of safety for people in mental health crisis halved compared with 2011-12," it says.
    Read the full article at the Guardian 

    (http://www.theguardian.com/society/2014/feb/18/police-cells-mental-health-detentions)


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    > A NIGHTMARE OF PRISON MENTAL HEALTH

    Short People Got … Lots of Reasons to Legitimately Feel Paranoid

    York, Pa.: Tallest Women In Basketball. The indoor cage sport has discovered in York, the feminine copy of the famous stretch Meehan, tallest man in basketball circles in the person of Miss "Babe" Roby, center of the Thompson Business College Quintet, an uncommon stunt is to have her teammates stand beneath her outstretched arms. Babe stands 6 feet 4 inches in height, and not all bone, but plenty of muscles.
    Being taller tends to be socially desirable. But why?
    PHOTOGRAPH BY BETTMAN/CORBIS
    Diane Cole
    PUBLISHED FEBRUARY 16, 2014
    Your physical height can affect your emotional state of mind, according to a new study.
    We already know that language bestows positive value on people of tall stature: We look up to them rather than down. And various studies have found correlations between being taller and earning more.
    Now virtual reality is adding to the understanding of the short state of mind. A study conducted at Oxford University and published in December 2013 used avatars to let participants go through the virtual experience of riding a subway at their normal height and then at that height reduced by ten inches.
    For the study, 60 women—none with a history of mental illness, but all of whom had recently reported mistrustful thoughts—donned headsets and viewed monitors as they participated in two 3-D virtual-reality trips on the London subway system. They were able to move and interact with other virtual passengers, exchanging glances or looking away from others, for instance.
    Read the full article at National Geographic 
    (http://news.nationalgeographic.com/news/2014/02/140216-short-tall-height-perception-psychology-bias-science/)

    WebMD Pockets Millions to Stimulate $1 Trillion in Drug Sales


    December 04, 2013 
    By Dr. Mercola
    According to the Washington Times,1 WebMD, the second most visited health site on the World Wide Web, has received a $4.8 million government contract to educate doctors about the ins and outs of the Affordable Care Act, colloquially dubbed “Obamacare.”
    A similar contract for the public portal to educate consumers might also be in the works. However, the lack of transparency and disclosure of the contract has raised questions about potential conflicts of interest.
    WebMD has defended against such allegations, saying that the government contract does not affect the company’s news operation, which is free to report what it wants about the health care plan. Still, as stated in the featured article:
    “[F]ew if any news outlets earn millions of dollars in training fees from the government on topics they cover, putting WebMD in a unique spot in the media landscape as it navigates not only potential conflicts but also the appearance of conflicts.”

    Read more at Mercola

    (http://articles.mercola.com/sites/articles/archive/2013/12/04/webmd-obamacare.aspx?e_cid=20131204Z1A_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20131204Z1A&et_cid=DM34427&et_rid=357451274)

    People with mental illness being jailed because of inadequate support: Health Commission


    Updated Wed 27 Nov 2013

    Health experts say too many people with mental illness are ending up in the criminal justice system and in hospital beds because they are inadequately supported in the community.
    The second national report card on mental health suicide prevention says there is a growing divide between those who are empowered to live a contributing life and those who face unemployment, homelessness and discrimination with mental health problems.
    National Mental Health Commission chairman Professor Alan Fels says more than one-third of people entering the prison system have a mental illness.
    The figure is even higher for juvenile justice, with more than 80 per cent told they have a psychological disorder...
    Read the full article at ABC
    (http://www.abc.net.au/news/2013-11-27/too-many-people-with-mental-illness-being-jailed/5118020)

    U.N. disability treaty won't protect the rights of wounded veterans

    BY JAMES JAY CARAFANO | NOVEMBER 24, 2013 AT 9:33 AM 


    It has bounced around the Senate for more than a year without winning ratification. Yet supporters of the United Nations' Convention on the Rights of Persons with Disabilities are back, pushing for yet another vote before senators head home for Christmas.
    Progressives embrace the treaty as another step toward creating a set of universal standards that will enable all mankind to live in peace and harmony. But many conservatives view the treaty as an infringement on American sovereignty with little chance of making the world a better place.
    Over the years, America’s military has fought mightily to preserve that sovereignty. Many of those fighters have paid the ultimate price. And many more have been severely disabled.
    Read more at the Washington Examiner 

    (http://washingtonexaminer.com/article/2539684)

    Social Security To Drop ‘Mental Retardation’


    By 
    The Social Security Administration will become the latest federal agency to start using the term “intellectual disability” in lieu of “mental retardation.”
    In a final rule published in the Federal Register on Thursday, Social Security officials said they approved the change in terminology citing “widespread adoption” of the term “intellectual disability.”
    “Advocates for individuals with intellectual disability have rightfully asserted that the term ‘mental retardation’ has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it,” Social Security indicated.
    Under the rule, all references to “mental retardation” and “mentally retarded children” will be replaced with “intellectual disability” and “children with intellectual disability” within Social Security’s Listing of Impairments and other agency rules. The change will not impact how claims are evaluated for those with the developmental disability.
    Read more at Disability Scoop 

    Siblings Of Kids With Disabilities May Have Problems Functioning, According To Survey Of Parents


    siblings kids with disabilities

    By Kerry Grens
    NEW YORK | Tue Jul 30, 2013 8:35pm IST
    (Reuters Health) - Children who have a sibling with a disability are more prone than other kids to having troubles with relationships, behavior, schoolwork or recreational activities, according to a new survey of parents.
    The study could not explain why the siblings of disabled kids were more likely to have problems functioning socially or emotionally than kids without a special needs brother or sister. But Anthony Goudie, the report's lead author, said he's convinced it has to do with the family situation.
    "That's driven by the disproportionate or increased financial strain and stress within these households, the psychological stress...and the emotional stress on caregivers and parents, and the amount of time they have to spend devoting to the child with a disability," said Goudie, who is an assistant professor at the University of Arkansas for Medical Sciences and Arkansas Children's Hospital in Little Rock.

    Read more at Huffington Post 

    Ambassador for disability-inclusive development


    29 July, 2013

    Prime Minister Kevin Rudd and Minister for International Development Melissa Parke talk of the need to raise the profile of people with disability in developing countries.
    Minister for International Development, Melissa Parke, today announced the Government’s decision to establish a new Australian Ambassador for Disability-Inclusive Development.

    Minister Parke said the ambassador will advocate for people with disability in developing countries to have access to the same opportunities as others and an equal say in the decisions that affect their communities. The appointment process will take place in the coming weeks.

    “Australia will be the first country to have an ambassador focused solely on disability-inclusive development. We are demonstrating to the world how central the matter of disability-inclusion is to our international aid efforts,” Minister Parke said.

    Read more at AUSAID 

    The Ruling That Could Change Everything For Disabled People With Million-Dollar Trusts

    A pissed-off judge, a $3 million inheritance, and a neglected autistic man

    When Judge Kristen Booth Glen walked into her Manhattan Surrogate's courtroom one day in 2007, she had no idea she was about to challenge the nation's top banks on behalf of tens of thousands of disabled people.
    Mark Holman, millionaire orphan
    Courtesy Sharon Awad
    Mark Holman, millionaire orphan
    Judge Kristen Booth Glen picked a fight with the banks.
    plsny.org
    Judge Kristen Booth Glen picked a fight with the banks.

    Before her stood lawyer Harvey J. Platt, who was petitioning to become the legal guardian of Mark Christopher Holman, a severely autistic teen who lived in an institution upstate.
    Holman had been left an orphan nearly three years earlier after the eccentric millionaire who adopted him passed away. According to doctors, he had the communication skills of a toddler, unable to bathe, dress, or eat by himself.
    But before Judge Glen would grant this seemingly perfunctory petition, she had a few questions for Platt.
    "How often have you visited Mark Holman?" she asked the lawyer.
    "Since his mother died, I have not visited him," said Platt.
    "And when you say you haven't visited him since then, how often had you visited him prior to that?"
    "I haven't seen him since he was eight or nine," responded the lawyer. "His mother used to bring him to our office with his brother, just to show him my face and so forth and so on, so I haven't seen him probably since 1995 or 1996."
    It was around that time that Platt helped Mark's mother, Marie Holman, draft her will and create trusts for him and his older brother. A decade later, when she was dying, Platt promised Marie he'd apply to become Mark's guardian.
    "And have you visited the institution which he currently resides in?" Glen asked.
    "No, I intend to, but I have not as yet," Platt said, sounding weary. "I don't think even a visit has much significance anyway. He's totally nonverbal—he's never spoken a word. He's potentially aggressive."
    This didn't sit well with Judge Glen. When it came to signing away the rights of disabled people to guardians, she was perhaps the most cautious judge in New York. But what came next would floor her.
    Read full story at Village Voice