From the New York Times:

In a cruel coincidence that scientists do not yet fully understand, research has shown that people with Down syndrome, a chromosomal abnormality, have a much higher incidence of Alzheimer’s disease at an early age. Some studies have said that 60 to 75 percent of people over age 60 with Down syndrome will have Alzheimer’s, though Dr. Ira Lott, who is in charge of the Down syndrome program at the School of Medicine at the University of California, Irvine, said those studies have been limited in scope.

So as advances in health care have extended the average life expectancy of people with Down syndrome to more than 50 years today from 25 in 1983, doctors and family members are now struggling to cope with a double dose of disability.

Scientists hope research on the link between Alzheimer’s and Down syndrome may lead to knowledge that could help prevent Alzheimer’s in the general population.

Extended feature by Sally Sara includes interviews with Gerry Thomas and his sister Beth (above).

See earlier post: Researcher Mobley offers hope to people with Down syndrome

He was 32 at the time, the essence of cool and one of the most powerful men in America. I was 25, toiling in relative obscurity in the depths of the White House press office.

He dropped by my office occasionally to read editorials clipped from out-of-town newspapers. I tiptoed by, awestruck, as he thumbed through my files of tattered clippings, certain that the information he sought was destined for the President’s ear alone.

My earliest impressions of Hamilton Jordan, the former White House chief of staff, were shaped by those clippings. Young and brash, the press had said of him at the start. Cocky. Brilliant. A political boy wonder, he had devised the strategy that brought Jimmy Carter to Washington.

With that 80-page memo, Hamilton had changed my life and the lives of countless others, leading us to Washington under a banner of change. Years later, I told him that he got the credit for my marriage, since I never would have met my husband had I not been among the lucky ones swept into the White House in the spring of 1977.

Hamilton waggled his eyebrows and quipped that he hoped it was credit –- not blame. He then got down to what really interested him, asking many questions about our daughter’s battle with leukemia and offering encouragement with an earnest squeeze of my hand.

(more…)

Stephanie Meredith, past co-president of the Down Syndrome Association of Atlanta, sends a response to Leslie Roberts’ blog post: ‘When abortion may be an acceptable choice.’ Roberts, a Canadian newsman and television personality, had written that abortion may be an acceptable choice when a disability is diagnosed prenatally.

Meredith writes:

Far from adding unendurable stress, parents of children with Down syndrome indicate that the stress involved with raising a child with Down syndrome is lower than expected (Hodapp et. al. 2001) and that families enjoy positive benefits from raising a child with Down syndrome (Blacher & Baker 2006). In fact, research suggests the parents of children with Down syndrome actually experience a lower divorce rate than couples who do not have children with Down syndrome (Urbano & Hodapp 2007), and the siblings of children with Down syndrome are typically more compassionate and well-adjusted than their peers (Dykens 2005).

While the reasons for this have not been fully explored and since most parents would resolutely deny the claim that they are saints, the evidence suggests that there is something to be learned from embracing genetic diversity. (more…)

Writing on Business Week’s Working Parents blog, Anne Newman features Dan Habib’s documentary Including Samuel. Newman is an old friend of Habib’s and also has a child with disabilities who is being fully included at school. She says inclusion has helped her child advance, but acknowledges that there are still many more difficulties to be resolved, like behavior problems and bridging the social gaps between students. Is disability a civil rights issue, she asks?

An excerpt of dialogue from the film’s preview (above):

Betsy McNamara, Samuel’s mother: Now that I’m so close to a person with a disability, I can’t believe that I was so blind to what people with disabilities in our community, in our counry, in the world, deal with every day. There was this huge civil rights issue, this huge amount of prejudice going on, and I never noticed it before.

Joe Petner, principal of the school Samuel attends: I see the work of inclusion as probably the last frontier of desegregation. If you read the brief from Brown vs. The Board of Ed (landmark U.S. desegregation case in 1954), the board of education argued that if we let blacks be integrated, that the next thing you know is that we’ll be letting people with disabilities be integrated.

Teacher in an inclusive classroom: I have cried many times about this year. I don’t know what to do. I don’t want another year like this year.

Earlier post: Including Samuel: An intimate view of full inclusion

From the New York Times, a feature on 20-year-old Sam Stabiner, who lives among elderly people in a Manhattan nursing home. His parents would like him to live among people his own age, but could not find a place for young adults that could provide appropriate care for Sam’s complex medical needs.

As medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and “medically fragile.”

… about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.

“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the chief medical officer at St. Mary’s Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York.

Elderly, people with disabilities would be denied care

From the Associated Press:

Doctors know some patients needing lifesaving care won’t get it in a flu pandemic or other disaster. The gut-wrenching dilemma will be deciding who to let die.

Now, an influential group of physicians has drafted a grimly specific list of recommendations for which patients wouldn’t be treated.

The suggested list was compiled by a task force whose members come from prestigious universities, medical groups, the military and government agencies. They include the Department of Homeland Security, the Centers for Disease Control and Prevention and the Department of Health and Human Services.

On the list of those not to be treated are:

• People older than 85
• Those with “severe mental impairment”;
• Those with a severe chronic disease, including advanced heart failure, lung disease of poorly controlled diabetes;
• People with severe trauma.

Public health law expert Lawrence Gostin of Georgetown University called the report an important initiative but also ”a political minefield and a legal minefield.” The recommendations would probably violate federal laws against age discrimination and disability discrimination, said Gostin, who was not on the task force.

… The recommendations appear in a report in the May edition of Chest, the medical journal of the American College of Chest Physicians.

• Related story: Pandemic flu threat remains substantial, experts say

Learning to deal with PTSD, lost limbs, brain injuries

From the Raleigh News & Observer:

With 1.5 million service members coming out of military duty in Afghanistan and Iraq since October 2001, colleges and universities across the nation have been striving to welcome them to campus. But it’s often not easy to help veterans cope with the consequences of their injuries.

Cheryl Branker, director of disability compliance at North Carolina State University, says many departments at the school have been slow to recognize that veterans may need accommodations for their disabilities. Many vets have returned with diagnoses of PTSD, tramatic brain injury, lost limbs or other chronic medical conditions.

“Not only am I a full-time student,” said one returning veteran, “I’m a full-time patient. It takes a toll, mentally and physically. Sometimes I’m there in class, but only in body. Not in mind.”