From USA Today:

A survey commissioned by the Kessler Foundation/National Organization on Disabilities finds that the ADA has not made meaningful progress in improving the quality of life for people with disabilities.

The survey shows that more must be done to help people with disabilities get ahead, said Carol Glazer, president of the National Organization on Disability.

“While education has improved considerably, joblessness has not. We as a nation must figure this out,” she said.

Among the survey’s key findings:

• People with disabilities still lag in key areas such as employment, access to health care and social interactions;

• 21% of disabled working-age Americans had a job in the past year, versus 59% for those without disabilities;

• 19% of people with disabilities said they did not get the medical care they needed in the past year, with lack of insurance coverage cited as the top reason;

• 48% of people with disabilities eat out at a restaurant twice a month, compared to 75% of those without disabilities; and

• 34% of disabled people say inadequate transportation is a problem, compared to 16% of those without disabilities, a gap that has widened 5 percentage points since 1986.

Related post here.

From the Wall Street Journal:

Members of pediatric medical groups say there is a critical shortage of pediatric sub-specialists, forcing sick kids to face lengthy waits before they can get medical care. Among the reasons: lower salaries, shrinking Medicaid reimbursements, and a rising tide of children who survived premature births to live with ongoing and complex medical problems.

Of particular concern, given the rise in autism-related disorders, is a shortage of development-behavioral experts; half of hospitals in the survey reported that it takes more than three months to see a developmental pediatrics specialist, one of the longest wait times.

Families report that they often must wait months to see a needed specialist and may also have to travel long distances, often to another state.

Congress considers adding school nurses

From the [Newark] Star-Ledger:

As more kids with more complicated health issues are attending mainstream public schools, school nurses are being called upon to provide care they once administered only in hospitals. A bill pending in Congress would offer grants to states to help pay for more school nurses.

Federal statistics say the number of students with chronic or acute health problems like leukemia, diabetes and asthma has doubled in recent years. “They’re actually managing more children with special needs, and we’re able to keep them in the school setting as a result of the school nurses,” said a doctor who serves 15 school districts in central New Jersey. “The kids have more complex medical issues. It’s not uncommon for kids to have feeding tubes, tracheostomies.”

Autism expert Simon Baron-Cohen writes in the New York Times that experts should move cautiously on the proposal to remove Asperger’s syndrome from the “Diagnostic and Statistical Manual of Mental Disorders.” He says such a move could have wide-reaching consequences for people and their families, as well as for insurers.

First, what happens to those people and their families who waited so long for a diagnostic label that does a good job of describing their profile? Will they have to go back to the clinics to get their diagnoses changed? The likelihood of causing them confusion and upset seems high.

Second, science hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition.

We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily.

Simon Baron-Cohen, the director of the Autism Research Center at Cambridge University, is the author of “The Essential Difference.”

From the New York Times:

As the possibility of a flu epidemic looms, public health officials around the country are developing triage plans to address one of medicine’s most troubling questions: Who should receive medical treatment when demands are high and resources are scarce?

The draft plans vary and have attracted little publicity. All involve methods for rationing care and diverting it away from vulnerable and impaired patients during a disaster.  Health officials defend formal rationing as the last in a series of steps taken to stretch scarce resources to serve the maximum number of people.

Employees at New York-Presbyterian Hospital were recently asked, in a hypothetical exercise, whether a man with cystic fibrosis who was rushed to a hospital during a flu pandemic could be relieved of his mechanical ventilator so that another healthier patient might have a chance to survive. (The employees couldn’t agree on what to do.)

Earlier posts:

Who should MDs let die in a pandemic? Panel makes a list

Report: People with disabilities left out of disaster planning

From ABC News:

Medical experts at the annual American Academy of Pediatrics meeting said there are cases when it’s ethical and legal for pediatricians to ‘fire’ a patient who refuses vaccines.

Experts said pediatricians struggle to cope with a growing number of parents who fear a link between autism and vaccines despite adamant statements to the contrary from the American Academy of Pediatrics and the U.S. Centers of Disease Control. The experts say some pediatricians face an ethical dilemma because they feel that the parental concerns about vaccines conflict with their responsibility to protect the safety of the patient and other patients in the office. In those cases, experts say it is not unreasonable for pediatricians to recommend that the patient switch to another provider.

Dr. Steven Abelowitz, director of the Coastal Kids clinic in southern California, said it used to be rare for patients to express concerns about vaccines. Now he says doctors in his clinic “deal with vaccine concerns 10-20 times a day,” with the big change coming after Jenny McCarthy appeared on TV.

Abelowitz said the major concern about keeping unvaccinated children in a practice is the risk it poses for other children, particularly for “young babies who are under the age of 2 months who are not vaccinated.”

From the Orange County Register (with video):

A recent policy change by California’s nursing board is endangering the lives of students by withholding medication needed to quell potentially life-threatening seizures, say parents and epilepsy advocates.

A directive issued by the board last month says no school staff except registered nurses can administer Diastat, and that schools must call 911 for assistance if no nurse is available.

Orange County dad Pat DeLorenzo said he had been told that staff members at his daughter’s public school were trained to administer the medication. But the directive by the state Board of Registered Nursing meant that his 7-year-old daughter, Gianna (above), had to wait more than five minutes for paramedics when she had a seizure in class recently.  “My daughter could have been dead by then,” he said, noting that the seizure ended before emergency personnel arrived.

… A spokeswoman for the American Nurses Association says the state nursing board was simply affirming California laws that prohibit unlicensed individuals like school staff from practicing medicine – and trying to shield nurses from unwarranted liability.

… Medical experts and epilepsy advocates say that prohibiting non-licensed school staff from administering Diastat is dangerous because of the time it can take for paramedics to arrive on scene. In a worst-case scenario, a seizure that is not stopped in a timely manner with Diastat could cause permanent brain injury or even death, potentially in a matter of minutes.

,,, “We need to have a change in legislation so the misinterpretation (of state law) can go away,” said Judith Pennella, executive director of the Epilepsy Alliance of Orange County.

Orange County’s school districts employ only 249 nurses for nearly 600 schools. In the state of California, the ratio is 2,500 students per school nurse.

(Orange County Register photo)