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)

A small group of parents protested this week that the Obama health care legislation would lead to the rationing of services for their children with disabilities, a charge that was refuted by some disability advocacy organizations.

Politico’s Ben Smith writes that such accusations are “simply not true,” and said the Obama proposal will actually benefit people with disabilities. Smith said the proposal will improve health care accessibility, prohibit insurance companies from setting limits on coverage, and prohibit the denial of coverage based on preexisting conditions. An excerpt:

The hard truth is, rationing exists right now in our health care system. Under the status quo, health insurance companies decide what care you can and can’t have, based not on which treatments you need, but what type of insurance you have.

But the health insurance reform that the President has proposed will mean the opposite — expanded coverage and lower costs. It will offer more choices for care for those with disabilities, not fewer. It will bring more stability and security to families of those with disabilities who currently have insurance, and it will expand coverage for those who don’t.

Writing in the Archives of Disease in Childhood (subscription required for full text), Dr. Brian Skotko reports that the number of babies born with Down syndrome has been steadily decreasing around the world as prenatal testing and selective termination have become more widespread.

Skotko reports that a trend toward later childbearing in the United States would have been expected to cause a 34 percent increase in the number of babies born with Down syndrome between 1989 and 2005 in the absence of prenatal testing. Instead, there were 15 percent fewer such babies born, a decrease of 49 percent between expected and observed rates.

With new and more sophisticated prenatal tests expected soon, Skotko called on the medical community to address the ethical questions raised by medical technologies that allow nations to decide what forms of human genetic variation are valued. He urged the medical community to:

– Develop guidelines for delivering a diagnosis of Down syndrome;

– Assemble current and accurate information on Down syndrome, in collaboration with parent support organizations, to be distributed to prospective parents;

– Offer comprehensive training to professionals on how to deliver a non-directive prenatal diagnosis; and

– Develop curriculum to give medical, nursing and genetic counseling students a richer understanding of Down syndrome.

An excerpt:

… In its support for Down syndrome prenatal screening, has the American College of Obstetrics and Gynecology endorsed a climate in which disability discrimination could more easily flourish?

… The age is swiftly coming where not all possible technologic advances may bring welcomed change. Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.

Dr. Brian Skotko is a clinical genetics fellow at Children’s Hospital Boston. ADC is the journal of the Royal College of Paediatrics and Child Health. Press release from Children’s Hospital Boston here.

Full article available for purchase here.

Christina Samuels writes in Education Week that the use of seclusion and restraints has prompted local attention in some deadly cases, but that national action has been hampered because the federal government does not track the issue and state policies vary widely.

Advocacy groups seeking action have responded by releasing a report, “School is Not Supposed to Hurt,” which documents deaths and injuries among students. The Government Accountability Office plans to release its own report in the next several weeks.

Some observers suggest that the use of seclusion and restraints has come as students with disabilities have moved into the general education setting, but the report documents cases of injuries that occurred in separate schools for students with disabilities.

(more…)

Education Week reporter Christina A. Samuels says the federal stimulus special education boost, providing an extra $6.1 billion now and another $6.1 billion to come later this year, comes with restrictions that limit the ways local districts can use the money.

Since the additional funds will only be available for two years, and a provision of the IDEA legislation requires districts to avoid making large cuts in programs from year to year, Samuels says “it’s unwise for districts to use the added funding to start new programs or hire new teachers.”

The stimulus funds will more than double the federal contribution of $11 billion previously appropriated for special education this year.

(more…)

Writing in the Chicago Reader, Deanna Isaacs raises red flags about a New York Times report that Kareem Dale, President Obama’s special assistant for disability policy, has been chosen to be the president’s staff adviser on arts and culture. The story “left jaws dropping in both the arts and disability camps,” she said.

An excerpt:

Andrew Imparato, president of the D.C.-based American Association of People With Disabilities, said his group wondered “What does this mean?” when they saw the Times story, and sought assurance from Dale that he’ll still be doing the disability job. He responded by e-mail that he would. “We’re happy that he’s continuing with the disability position,” Imparato said, but added that double duty could be “a mixed bag.” While it might offer a chance to integrate some areas of overlap, “it could also be a distraction.” With the disability issues alone, Imparato said, “he’s got a pretty full plate.”

… [Americans for the Arts spokesperson Liz Bartolomeo said, “We still believe President Obama will be the arts president.” If that’s the case, Mr. President, then unlike the other situations you’re facing, this is easy. Disability and the arts each need their own point person. Fix it.

‘Parents see the world through their children’s eyes. And Ivan Cameron changed his father’s view of everything.’

Writing in the [UK] Independent: columnist Deborah Orr says the life and death of Ivan Cameron  profoundly shaped the views of his father, UK Conservative leader David Cameron — and thus, perhaps, the future of a nation. Six-year-old Ivan, who had cerebral palsy and epilepsy, died this week.

Through Ivan, she says, David Cameron came to understand the challenges faced by people with disabilities, many of whom cope daily with  poverty and isolation. Cameron is considered likely to be the UK’s next prime minister.

An excerpt:

Young as he was, Ivan had a place in the public life of the nation, at least by proxy. He featured in speeches. His influence could be seen in Conservative Party policy. Cameron admitted that his views, especially his views about the National Health Service, had been altered by the experience of caring for a son with complex needs. Cameron also opted for state-sector schooling for Ivan, and admitted that his son’s special needs prompted him to think hard about the limits of inclusive educational policy.

… The failures of the present government, rather than his own clarity of purpose, are the factors likely to deliver Cameron to power at the next election. But Cameron is the first to acknowledge that his experience of being a father to Ivan has already had a strong influence on the direction in which Cameron wishes to steer Conservatism.

In this way, Ivan’s short life will continue to have a highly significant legacy: He changed his father, and his father has ambitions to change the country. This is, of course, just as it should be.

See also: The quiet heroism of carers, editorial in the [UK] Independent

An excerpt:

[The Camerons'] devoted parenting has illuminated the predicament of all those caring for severely disabled children. And the reality is that too many of these families are offered inadequate support.

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