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.

By Robert Pear in the New York Times:

A proposal to provide long-term coverage to people with disabilities and chronic illness is roiling debate in Congress. The measure was included in health care legislation passed by the House.

Advocates say the proposal, drafted several years ago by Sen. Edward M. Kennedy, is long overdue and would help people with severe disabilities who want to live in the community. Critics on both sides of the aisle say it is financially unsustainable and would rack up huge debts.

Senator Christopher J. Dodd (D-CT) said the benefits would allow people with disabilities to “live out their lives with decency and dignity.”

“What’s the alternative?” Mr. Dodd asked. “Getting rid of all your assets, impoverishing yourself, relying on your family or friends to take care of you in order to try to survive.”

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.”

By David G. Savage and James Oliphant in the Los Angeles Times:

The historic confirmation Thursday of Judge Sonia Sotomayor as the nation’s newest justice will bring new perspectives to the Supreme Court, and not just because she will be its first Latino.

… Her diabetes and daily insulin shots it requires were not much discussed during the hearings, but that experience is bound to influence her views, some lawyers say.

“She may be a strong voice for access to healthcare,” said Sylvia Lazos, a law professor at the University of Nevada, Las Vegas. “She will be a real player in the debates over what is a disability.”

Advocates for those with disabilities have suffered some big defeats in the court in the last decade, and they have high hopes for Sotomayor. “We’re very excited. We don’t feel we have had a champion on the current court,” said Andrew Imparato, president of the American Assn. of People with Disabilities.

See also: Judge Sotomayor’s confirmation to Supreme Court is historic moment for people with disabilities — Press release from the Bazelon Center for Mental Health Law

Earlier posts here.

(AP photo)

From ABC News:

Because summer camps traditionally don’t serve kids with disabilities, specialty camps designed specifically for them are cropping up around the country.

“Summer camp is just part of Americana, and if you’ve got children with particular special needs it’s just very difficult for them to readily fit into a mainstream setting,” said Sean Nienow, the director of the National Camp Association. “Camps are set up with a lot of physical activity and are not set up to cater special needs.”

ABC profiles some specialty camps:

• Camp Twitch and Shout (outside Atlanta) for children with Tourette’s syndrome;
• Adventure Amputee Camp (Bryson, N.C.) for children with amputations;
• Cap I-Thonka-Chi (Meridian, TX) for children with traumatic burns;
• Camp Sunshine (outside Atlanta) for children with cancer;
• Camp Heartland (Minneapolis) for children who are infected with HIV/AIDs or have family members who are; and
• Camp Celiac (North Scituate, R.I.) for children with celiac disease.

… One boy at the Adventure Amputee Camp spoke for all the special needs campers when he was asked what he liked best about camp: “No one is staring, asking what’s wrong with you or criticizing your faults.”

See also:

‘At Camp Twitch and Shout, Tourette kids can be themselves’ — CNN

(ABC News photo)

From the Washington Post:

A campaign on conservative talk radio, fueled by President Obama’s calls to control exorbitant medical bills, has sparked fear among senior citizens that the health-care bill moving through Congress will lead to end-of-life “rationing” and even “euthanasia.”

The controversy stems from a proposal to pay physicians who counsel elderly or terminally ill patients about what medical interventions they would prefer near the end of life and how to prepare instructions such as living wills.

… on right-leaning radio programs, religious e-mail lists and Internet blogs, the proposal has been described as “guiding you in how to die,” “an ORDER from the Government to end your life,” promoting “death care” and, in the words of antiabortion leader Randall Terry, an attempt to “kill Granny.”

Defenders of the legislation, including lawmakers, the American Medical Association and the AARP respond that the accusations are untrue, offensive, and even cruel.

Earlier posts start here.

Rebecca Reisner, writing in Business Week, says an obscure end-of-life provision in the administration’s health care proposal is stoking passions in the “conservative blogosphere,” with claims that it is a step toward government-mandated euthanasia.

During an AARP-sponsored town hall meeting earlier this week, a woman told the President: “I have been told there is a clause in there that everyone that’s Medicare age will be visited and told to decide how they wish to die. This bothers me greatly, and I’d like for you to promise me that this is not in this bill.” Obama replied that the intent of the provision was to promote advance planning and living wills.

Advocates of the measure say critics have misinterpreted the provision, while opponents are contending that their criticism of it has been misunderstood. An AARP spokesman criticized “baseless scare tactics put out by those who seek to derail health-care reform.”

See also:

False euthanasia claims: The claim that the House health bill pushes suicide is nonsense — Factcheck.org

Earlier posts here, here and here.