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Parents of children with disabilities raise concerns about U.S. healthcare reform

September 16, 2009

On Tuesday, September 15th, a group of parents who have children with a range of disabilites, as well as a young adult with cystic fibrosis, converged on the Hill. The event was sponsored by Representatives Cathy McMorris-Rodgers and Trent Franks through the new coalition, Healthcare for Gunner. Some parents had first-hand experience of rationed care in other countries while other parents spoke about how they are able to obtain the best care for their children now, and fear this will change if the sweeping healthcare overhaul H.R. 3200 passes. 

This discussion always brings bad feelings because our Canadian and UK friends feel their system is being unfairly represented. But it is crucial that we look at the problems some have experienced so that we do our best to avoid making the same mistakes. Additionally, the concerns (and of course, experiences) the parents draw upon are no less cogent because President Obama and his healthcare advisors have, themselves, advised that some rationing will need to occur – and of course, some will happen as unintended consequences. Some points of concern are documented in the HealthCare for Gunner Coalition white paper. While all parents recognized the need for some specific healthcare reforms, none could stand behind the proposed bill.

Government-Run Health Care Would Ration Care for Disabled Children, Parents and Lawmakers Warn

Wednesday, September 16, 2009
By Penny Starr, Senior Staff Writer

(CNSNews.com) – Rep. Trent Franks (R-Ariz.) on Tuesday shared a personal story that shows why he is passionate about protecting the most vulnerable in society — and why a government-run health care program would not only fail to offer that protection, but could end up rationing care for some people, including children with disabilities.

At a Capitol Hill press conference, Franks said the parents who brought their special needs children to Washington, D.C., had the most compelling stories to share.
Franks 
“But I would cite just one (story) that has a personal connection to me,” Franks said. The story involved an “old man” and his firstborn son, who was born with deformities of the mouth – a “missing pallet” and other issues, Franks said.
 
“And the doctors at that time in the small hospital said, ‘Well you can’t breast feed this child, you can’t feed him. So the best thing to do is to do away with him in a merciful manner.’
 
“Well, the man said ‘No, this is my first child, we’re going to take him home and do the best we can. We’ll make a machine to feed him.

At a Capitol Hill press conference, Franks said the parents who brought their special needs children to Washington, D.C., had the most compelling stories to share.
 
“But I would cite just one (story) that has a personal connection to me,” Franks said. The story involved an “old man” and his firstborn son, who was born with deformities of the mouth – a “missing pallet” and other issues, Franks said.
 
“And the doctors at that time in the small hospital said, ‘Well you can’t breast feed this child, you can’t feed him. So the best thing to do is to do away with him in a merciful manner.’
 
“Well, the man said ‘No, this is my first child, we’re going to take him home and do the best we can. We’ll make a machine to feed him.

The machine turned out to be an eyedropper and a pill cup,” Franks said. “And the child grew up to be big and strong. And of course I’m thankful to that old man, because he was my dad.”
 
Franks said he had 11 surgeries before he was 9 years old.
 
Franks was flanked by more than a dozen parents, some with their disabled children in tow and others carrying photographs of their children, including children who died from complications related to their disability. Continue

More: Will Health Care Reform Overlook Children with Disabilities?

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