WASHINGTON -- Parents of children with disabilities are worried about what the proposed changes in the health care plan could mean for their children.
As the sun beamed down on the U.S. Capitol building, more than a dozen families gathered outside to shine light on one issue in the middle of the health care debate.
They sent a letter to President Barack Obama and congressional leaders about their concerns and fears -- that a government-run health care plan would lead to rationing of care for children and people with disabilities.
"He's never spoken a word, and he probably won't, but he sings and he loves the Bible, and he claps his hands, and he's just a joy," said parent Mary Kellett about her son.
The group says legislation now working its way through the House and Senate could eventually lead to commissions that will decide which treatments are the most effective for patients.
"I fear such a system will deem his ventilator too costly or his wheelchair too rehabilitative," said parent Carrie Holt.
They worry that the pending legislation could result in the U.S. having a health care system very similar to Canada's.
Barbara Farlow, who lost her baby daughter to a genetic condition in Ontario, shared her story.
"No diagnostic tests had been done and a 'do not resuscitate' order was written before we had provided consent." Farlow said. "The hospital apologized and wrote that they could have done better."
Now Farlow's mission, along with the other families, is to see that the needs of the most vulnerable children in society are not overlooked or rationed.
Rep. Cathy McMorris-Rogers, R-Wash., the mother of a son with Down syndrome, is working on alternatives.
"There needs to be improvements to the health care system to meet the needs of families that have children and loved ones with disabilities," McMorris-Rogers said.
While the current legislation does not precisely call for rationing, the concern is what it will lead to down the road.
"Bottom line, these are concerns that we believe need to be addressed as we move forward on health care reform," McMorris-Rogers added.
"Johanna has continually reminded us to take every day as a gift from God, and not take anything for granted," said parent Eileen Benthal. "She is a reminder to us that life is much more than the temporal world, that there is an eternal perspective that will change the world for the better."
CBN News contacted the White House to get the administration's response to this story and are awaiting their reply to our request.