From the BBC, [UK] Telegraph:

The Welsh parents of a girl with a terminal illness say they will fight a hospital’s decision to withhold life-saving treatment. They say doctors told them their daughter, who is on a ventilator, was at the end of her life and that a judge would have to authorize further care.

Amber Hartland, 6, has Infantile Tay-Sachs, and is almost totally paralyzed and unable to speak.

“We believe it is about money,” said Lesley Hartland, Amber’s mother. “But my father, my husband’s mother and father, they have all paid their taxes and have never used the health service. Everyone is entitled to the health service.”

“Amber has a right to life,” she said.

Hospital sources said cost was not an issue, and that the child was receiving high quality and compassionate care.

‘Autistic and uncovered’

From the St. Louis Post-Dispatch:

Molly and Steve Schad say they have spent about $60,000 on various treatments for their son Harry (left) since he was diagnosed with autism five years ago. Bills under consideration in Missouri and Illinois would require insurance companies to provide some coverage for autism treatments.

Insurance companies are wary, and say mandating benefits could make premiums shoot up without necessarily providing better care. They say many autism treatments are unproven, and that much remains unknown about the disorder.

Meanwhile, parents like the Schads report that efforts to help their children are causing them financial hardships. In a recent study, parents described filing for bankruptcy, liquidating retirement funds, and stripping the equity out of their homes to pay for services not covered by insurance. Parents also reported losing income as they gave up their jobs to care for their children with autism.

Presently, about 30 states do not mandate insurance coverage for autism.

‘Tired of being a mom: A 12-year nightmare?’

‘Should the boy be institutionalized? Find out what Dr. Phil thinks’

The syndicated Dr. Phil television show this week features an episode on women who say they can’t cope with their children. One of the spotlighted families has a son with both Down syndrome and autism. The boy is described this way on the show’s website:

Cyndi says if she’d known her 12-year-old son, Alex, had autism and Down syndrome, she may not have brought him into the world. She says he hits himself, screams, and wears diapers because he’s not potty trained. Her husband says he doesn’t find it difficult to care for Alex.

(more…)

Stigma of illness a barrier in seeking help

From the Stockton [CA] Record:

According to a national study by the National Alliance on Mental Illness, people from Latino families are unlikely to get treatment for mental illness. Among Latinos with mental disorders, the group found that fewer than one in 11 seeks mental health care specialists. That number went down to fewer than one in 20 among Latino immigrants with mental disorders.

Much of this can be attributed to a lack of education and a stigma attached to mental illness among Latino families, said a NAMI spokeswoman. The families tend to attribute the symptoms of mental illness to witchcraft, demon possession, drug abuse or alcohol abuse.

“It’s easier to believe these things than to believe that your loved one has a mental illness,” she said. “They (would) rather believe it’s something that will go away.”

From the Columbus (Ohio) Dispatch and the Associated Press:

A bill in the Ohio House would require health-insurance companies to cover autism treatment as they cover care for other medical conditions. It is modeled after a recently passed mental-health parity law, which requires insurance coverage for certain psychological conditions. Insurance companies have expressed concerns about the bill.

A blue ribbon panel in Missouri is recommending that the state enact legislation requiring private insurers to provide coverage for people with autism through age 21 for services like behavioral, occupational, speech and physical therapies, and medications, nutritional supplements and assessment services.

At least 17 states — including Connecticut, Georgia, Indiana, Kentucky, Maryland, New York and Tennessee — require health plans to provide some coverage of autism treatment. And several states are considering measures similar to the one in Ohio.

See earlier posts here and here.

From Time Magazine, the Associated Press, U.S. News & World Report, and others.

The nation’s leading group of pediatricians is urging that all children be screened for autism twice by age two.

The advice is meant to help both parents and doctors spot autism sooner. There is no cure for the disorder, but experts say that early therapy can lessen its severity.

The American Academy of Pediatrics is releasing two reports that detail the call for early screening and the symptoms to watch for. They will appear in the November issue of the journal Pediatrics and on the group’s Web site — http://www.aap.org.

The two new reports say children with suspected autism should start treatment even before a formal diagnosis. They also warn parents about the special diets and alternative treatments endorsed by celebrities, saying there’s no proof those work.

Recommended treatment should include at least 25 hours a week of intensive behavior-based therapy, including educational activities and speech therapy, according to the reports. They list several specific approaches that have been shown to help

From the Washington Post:

Online environments are increasingly allowing people with disabilities to develop skills or gain confidence.

Susan Brown, who had a stroke four years ago, has regained use of her legs thanks in part to encouragement she gets from an online “virtual world” where she can walk, run and even dance. Other people use online avatars to help them learn to deal with agoraphobia, autism, cerebral palsy, depression, paralysis, cystic fibrosis and other conditions.

“We’re at a major technical and social transition with this technology. It has very recently started to become a very big deal, and we haven’t by any means digested what the implications are,” said William Sims Bainbridge, a social scientist at the National Science Foundation.