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News on Health Care

Health-care-related news stories of interest to parents of children with special needs, from the Parenting Special Needs blog and news sources around the Web. For the latest news, go to the Today's News folder.
Heavy Infant Denied Health Insurance
From ParentDish: "A 4-month-old baby boy whose weight is in the 99th percentile is being denied health insurance because he is 'obese.'" (10/14/09)
Two ER Stories, Different Outcomes, Lessons Learned
From About.com Patient Empowerment: "Trusting one's intuition, then acting on it is very powerful. If you have a feeling you (or a loved one) needs care you aren't getting, then be insistent!  Be assertive if necessary.  Be persistent. But act!  And don't back down." (9/28/09)
The Power of Parent Advocacy
From Wrightslaw: "If you don't have it, get some advocacy power." (9/26/09)
Medical Homes Roll Out the Welcome Mat
From About.com Patient Empowerment: "Patient-centered medical homes are a new twist on an old concept;  the concept of proactively taking care of patients as whole people, not just as series of body parts and organ systems." (9/24/09)
Pediatrics: Kids need specialized care in hospital ERs
From Science Blog: "According to a recent IOM report, only 6 percent of U.S. hospital emergency departments are fully equipped to properly care for children. With high rates of novel H1N1 (swine) flu expected this winter, the time to address these deficiencies is immediate." (9/22/09)
Rationing or Better Care for Kids with Disabiliites?
From Special Needs Truth '08: "Officials at Easter Seals and the Autism Society say the proposed legislation would improve services for disabled children. And 40 groups that advocate for people with disabilities are on record as supporting the House Democratic bill." (9/16/09)
British Doctors Leave Preemie to Die
From ParentDish: "The preemie had a strong heartbeat and was moving his arms and legs upon delivery. But ... doctors refused to offer him medical attention or access to intensive care because little Jayden was just two days shy of the 22-week cutoff date for treating premature babies established in the British national healthcare guidelines." (9/16/09)
Hospitals To Improve Care For People With Disabilities
From Disability Scoop: "Massachusetts General Hospital and Brigham and Women's Hospital will spend millions to improve accessibility and train employees to better serve people with disabilities. The hospitals will purchase new equipment such as scales to weigh people in wheelchairs and specialized exam tables and X-ray machines." (7/2/09)
How to get help in a hurry in the ER
From CNN: "According to a report out this week, the average total waiting time in a U.S. emergency room in 2008 was four hours and three minutes, a 27-minute increase in nationwide average wait times since 2002." (6/26/09)
A Dozen Tips for Navigating NICU/PICU
From Down Syndrome New Mama: "Neonatal and pediatric intensive care units can be intimidating places. Unless you are in the field of pediatric medicine, you are way out of your element and it can feel like they all know more about your baby than you do. I am going to share twelve tips that can make ICU time easier on you and your baby." (6/24/09)
Couple faces end of battle over death of baby with Trisomy 13
From Disability News: "Barbara Farlow has claimed that the hospital denied Annie proper treatment, issued a 'do not resuscitate' order without her parents' consent, and gave her a lethal dose of painkillers as part of an unspoken policy to deny life-saving treatment in the case of infants with genetic disorders." (6/23/09)
'Best of the Best' Children's Hospitals
From WebMD: "U.S. News & World Report has once again ranked the nation's top children's hospitals, and 10 institutions took honors as the best of the best." (6/19/09)
Insurance, HMOs, and Bike Rides
From Autism - Change.org: "There's more that insurance should cover for autism than ABA, and not only for children. Autism is a lifelong disability, and individuals may well need services of different sorts at different times in their life." (6/2/09)
Guidelines needed for informing patients of medical errors
From Science Blog: "While there are guidelines outlining how health care providers communicate medical errors to patients, few exist in Canada or other countries for disclosing errors affecting large numbers of patients." (5/26/09)
Life With a Pre-Existing Condition
From Gluten Free Raleigh: "I'm ... sure you've heard that having Celiac Disease (or numerous of it's related conditions) qualifies you for having a dreaded 'Pre-existing Condition.' Of course, that term can be interchanged freely with 'Not able to get Health Insurance.'" (5/4/09)
With Son in Remission, a Family Struggles to Find Coverage
From the New York Times: A family's loss of job and health insurance puts their son, a cancer survivor, at risk. (4/21/09)
Parents: Ontario hospital withheld treatment from disabled girl
From Disability News: "Barbara and Tim Farlow say their daughter, who was born with Trisomy 13, was admitted to Toronto's Hospital for Sick Children with breathing problems but did not receive proper care because a 'do not resuscitate' order was issued without their knowledge or consent." (4/16/09)
Death of a child in the neonatal intensive care unit
From Science Blog: "Little is known about the long-term effects of the death of a child in the neonatal intensive care unit (NICU) on survivor siblings. These siblings may encounter unforeseen emotional difficulties and developmental consequences that can occur whether the siblings are born before or after the infant's death." (4/2/09)
Hospital Cheat Sheet
From Special Needs Bliss: "While I can't keep you out of the emergency room, I can help ease a little bit of the stress.  You need to create a Hospital Cheat Sheet." (4/3/09)
Patients' Bill of Rights Too Tough to Read
From HealthDay: "Analysis shows most documents require reading skills beyond those of general population." (3/28/09)
Finding Your Dr. McDreamy
From Special Needs Bliss: "If someone in your life has special needs,  that will often increase the time you spend in the doctor's office.  While special-ordering a doctor with brown curly hair and eyes that make you melt might not be a possibility, it is possible to find a doctor that you like." (3/28/09)
Parents sue hospital for keeping daughter on life support
From Disability News: "Menard said the parents had withdrawn life supports from their infant daughter, Phebe Mantha, at the recommendation of doctors. He said the hospital's ethics committee overruled their decision and resumed her feeding without consulting them. The little girl is now described as 'severely disabled.'" (3/16/09)
Are Hospital Mobile Phones Dialing Up Superbugs?
From HealthDay: "Turkish study finds 95% of headsets contaminated with bacteria that could infect patients." (3/6/09)
The Real Cost of Wasted Waiting Room Time
From About.com Patient Empowerment: "The cost of time in the United States is $240 billion per year, and that doesn't even get counted when we look at the overall cost of healthcare we hear from politicians." (3/4/09)
Intuition, Your Medical Choices - Stories Needed!
From About.com Patient Empowerment: "If you have been one of those people who "just knew" -- if you trusted your intuition to help you pursue a second opinion, or to ask to be retested, or to go in search of an accurate diagnosis, will you share your story?" (2/25/09)
For Uninsured Young Adults, Do-It-Yourself Health Care
From the New York Times: "They borrow leftover prescription drugs from friends, attempt to self-diagnose ailments online, stretch their diabetes and asthma medicines for as long as possible and set their own broken bones. When emergencies strike, they rarely can afford the bills that follow." (2/19/09)
"Sorry for the inconvenience?" Are you kidding me?
From Special Needs Parent Coach: "Recently we received a letter from our health insurance company stating that they would no longer cover a medication that my son takes for acid reflux -- with no possibility of an appeal." (1/28/09)
Families teach med students about disabilities
From Disability News: "A group of Harvard Medical School students is reaching out to patients and their families to learn what textbooks haven't taught them about people who live with genetic disorders." Along the way, the students get an earful about battling insurance companies, struggles with accessibility, and kids who ostracize their classmates. (1/9/09)
Federal Health Insurance and Hearing Aid Coverage
From About.com Deafness: "Now that Federal health insurance offers hearing coverage, will non-Federal insurers follow suit? Will the complaints about insurance not covering hearing aids finally go down? If Blue Cross/Blue Shield is offering hearing aid coverage for Federal employees, are they doing the same for non-Federal plans?" (12/14/08)
Children increasingly medicated: study
From Reuters: "From 2002 to 2005 prescriptions for medicines to treat type-2 diabetes doubled, asthma medications rose by more than 46 percent, medicines for attention-deficit hyperactivity disorder increased by more than 40 percent and prescriptions for cholesterol-lowering drugs were up by 15 percent." (11/3/08)
Families of children with disabilities fall through health care gaps
From Disability News: "As Americans grapple with a troubled health care system, the presidential candidates propose plans to help families who have fallen through the gaps, including parents of children with disabilities." (10/25/08)
Waiting for the doctor... and waiting and waiting
From CNN: "It's probably fair to say none of us ever wants to sit so long in a doctor's waiting room that we resort to filing a lawsuit or videotaping ourselves. But there are strategies you can use to try and prevent frustrating waits." (10/24/08)
Book Review: "Overtreated" by Shannon Brownlee
About.com's Patient Empowerment Guide gives five stars to a book about "Why Too Much Medicine Is Making Us Sicker and Poorer." (7/13/08)
Patients Need to "Listen" to a Doctor's Body Language
Trisha Torrey, the About.com guide to Patient Empowerment, has a great manifesto on listening to what your doctor's not saying, and returning a few choice words of your own. (7/14/08)
Has Your Claim Been Denied? Push Back - and Get Help
From About.com Patient Empowerment: "Don't forget, too, that up to 90% of hospital bills contain mistakes -- the bottom line for us wiser consumer-patients is that we need to review all bills carefully, and call in the cavalry when necessary." (9/27/08)
How to Bug a Doctor
From Musings of a Distractible Mind: Mad at your doc? Frustrated at being made to wait? Allow me to let you in on ten secret ways to really get under your doctor's skin. (9/16/08)
Mother campaigns for medical care for kids with disabilities
From Disability News: A mother whose daughter died after a "Do Not Resuscitate" order was issued without the parents' consent is campaigning against doctors playing God. (9/1/08)
Five mistakes that will land you in medical debt
From CNN: Five mistakes -- and, more importantly, what you can do to reduce and handle medical bills. (8/29/08)
79 million US adults have medical bill problems
If you're drowning in debt from medical bills, you've got lots of company. (8/20/08)
Doctors and Barbers
Responding to a comment from a barber about service expected and paid for, a doctor notes the similarities and differences. (8/19/08)
Bedside Manner -- Right or Privilege?
Why are we so willing to put up with disrespect? (8/15/08)
Getting along part 2: Patient rules
I made the first part of this, the Doctor Rules, my Site of the Day today, but this half, for us, is worth a read too. (8/11/08)
CDC: Average ER wait time approaches one hour
But if you're there with your child, it feels like two. (8/6/08)
Top Ten Rehabilitation Hospitals in the USA
A listing from BrainandSpinalCord.org. (7/27/08)
Out-Of-State Surgery And How We Did It
How one family dealt with "the words no parent ever wants to hear: 'Your child needs surgery.'" (7/25/08)
Children treated abroad as U.S. doctors push for devices
Reuters reports on doctors determined to use devices not yet approved for use in the U.S. (7/21/08)
Irreverent Providers: Acronyms, Insults and Your Medical Records
What does your child's doctor really think of you? About.com's Patient Empowerment Guide translates some impolite acronyms. (7/20/08)
Medical home concept catching on in U.S.
"The term 'medical home' describes not just a physical place, but the people who provide care and how they do it. In an ideal medical home, patients and parents feel respected. Staffers take a proactive, team approach to helping families coordinate information from multiple providers and direct them to other resources in the community." (6/18/06)
Journal focuses on pediatric end-of-life care
The journal Pediatrics takes on the hard-to-take topic of end-of-life care for children in its March issue, with a study indicating that palliative care is sorely lacking. (3/7/06)
Pediatricians and information overload
A study says doctors tell parents too much. (11/25/05)
Should doctors let a sick baby die?
The right of parents to decide the medical fate of their children got a boost this week when the parents of two-year-old Charlotte Wyatt had a ruling overturned that had permitted doctors to refuse to keep her alive if her tenuous hold on life weakened. (10/22/05)
Helping kids, annoying doctors
Do clowns have a place in the operating room? (10/4/05)
Euthanasia controversy
A hospital in the Netherlands made headlines recently for admitting that it had illegally euthanized severely disabled infants. (12/3/04)
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