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US News & World Report

Aaron’s Tracheostomy Page was mentioned in this week’s issue of US News & World Report:

Parents and other caregivers, after all, are the most motivated to pour their hope and energy into the hunt. Aaron’s Tracheostomy Page ( is run by Cynthia Bissell, a registered nurse and mother of three disabled children in Grafton, Mass. Aaron, a twin who is now 14, had developed scar tissue in his airway as a premature newborn, related to steps taken to support his lungs. After that, he needed a permanent hole in his windpipe—a tracheostomy—to help him breathe. Bissell found no online resources to help her manage her son’s “trache” day to day, so she launched the site. It has the information she was looking for, as well as a medical glossary and links to other resources. And the site hosts bustling message boards where participants boost one another’s spirits and ask for advice; parents recently debated two approaches to trachea reconstruction. “It has been part of my therapy for the last 10 years,” says Bissell.

Read full article here: “When a Child Truly Needs the Best



Being an RN in the health care field and also having three children with disabilities, I’m well aware of the problems with our current health care system. I’m thankful to live in one of the better states where we have more resources and better health coverage. I’m able to get the help I need for my children, but only because I know how the system works. I spend a lot of time helping parents who are not-so-savvy to get the help they need for their children. But in some states, the help is just not there. I know parents in other states who can’t bring their kid home from the hospital, because they can’t get a Medicaid waiver. I know of parents who have had to quit their jobs and claim bankruptcy because they can’t get home nursing for their medically fragile children. And just about every parent of a child with a disability in the US has to cope with the red tape and hassles trying to deal with insurance companies and medical supply companies on top of all of the stress that naturally goes along with having a child with medical issues. We need a national health care plan so that everyone is covered regardless of what state they happen to live in, regardless of whether they are rich or poor, regardless of whether they are employed or unemployed and regardless of whether they are well or sick. I hope that Michael Moore’s new film “Sicko” will alert Americans to the problems with our health care system and that it will be a vehicle for much needed change.

Michael takes an interesting perspective in this documentary. Rather than focusing on the almost 50 million Americans without health care, he looks at the average American who thinks they have good coverage until something goes wrong. He also looks at how universal health care works in other countries such as Canada, the UK, France, and Cuba.

Some of the key points of the movie:

While 50 million Americans have no health insurance, others can’t even get insurance because of “pre-existing conditions”.

Those who do have coverage can go broke trying to pay co-pays with a catastrophic condition.

With our health-for-profit system, the insurance companies are making money, while Americans are denied health care.

The system has not changed because lobbyist for the big insurance companies control the government through campaign contributions.

It’s not only the insurance companies making lots of money; it’s also the pharmaceutical companies charging outrageous amounts for medications. Some elderly people have to work well beyond retirement age, just to pay for prescriptions and the poor who can’t pay for medications at all.

Bottom line? We are the riches country in the world and we have the most expensive health care system. Yet our health care system ranks #37 in the world according to the World Health Organization. We are the only country in the western world without free universal health care for all of our citizens. We need universal health care now. This will take a drastic change in our health care system, not just a few changes here and there. The system is broken and needs to be fixed. We need to cut out the middle man and go to a one-payer system. Health care should be free for all Americans, not for the profit of insurance companies. We can do better.


On The Lot

On the Lot is a new Fox reality TV show. It’s pretty much a bad clone of American idol, except the contestants are movie directors, rather than singers. The show has the same setup with the three judges and then the audience picks the winners. My son Aaron is very into movie making, so I’ve been watching the show with him. The movie making aspect is interesting and I would like to see more of the technical side of film making.

However, last weeks winner was very disturbing. The winning video titled “Getta Rhoom” was clearly insulting and offensive to people with developmental disabilities. The director claims that the individual portrayed in the film was just a nerd. Sorry, but a director who doesn’t know the difference between a nerd and a person with a disability has his own mental challenges.

When the film was first shown, all three judges found the movie offensive, and rightly so. But the audience disagreed and not only liked the film, but voted it #1! The fact that this film was voted #1 makes it clear that we have a long way to go before people with disabilities are accepted by our society.

Even worse, after the vote, judge Carrie Fisher (Star Wars’ Princess Leia) who was shocked by the insensitivity of the film, caved into public opinion after the vote, saying, “I was wrong”. Carrie, you were not wrong, you were right on target with your initial reaction. Never underestimate the ignorance of the American people.

Here’s the video, judge for yourself, nerd or person with a disability?


Gun Control

Maybe something good can come out of the Virginia Tech Massacre? There is no reason in a civilized society for hand guns. With the exception of law enforcement, the dangers of citizens owning hand guns now out weights the benefits. It’s time we took a fresh look at the antiquated second amendment. In 1997, there were 15,289 murders in the United States, 10,369 were committed with guns. Something is terribly wrong when a 23 year old student with a history of mental illness can walk into a store and buy a gun. There is no doubt in my mind that outlawing hand guns will lower firearm fatalities.