Parents of disabled children speak out on health reform proposals

WASHINGTON – Seventeen parents of children with disabilities gathered on Capitol Hill Sept. 15 to speak out against proposed government health care reform plans that they said could mean the difference between life and death for their children by limiting access to doctors and rationing health care.

The parents, many with their children by their side or holding large photos of their loved ones, joined together as the Healthcare for Gunner Coalition to let President Barack Obama and Congress know that it will be their children and their families who could suffer and be denied critical care under current proposed legislation.

Joined by Rep. Cathy McMorris Rodgers, R-Wash., the mother of a child with Down syndrome, and Trent Franks, R-Ariz., who was born with a cleft palate, coalition members presented a horrific picture of a future where the weak, vulnerable, elderly and the unborn are given lowest priority.

“We have to make sure that health care legislation doesn’t leave this important group behind,” said McMorris Rodgers. “We have to make sure that health care reform does three things: improve the health care in America, lower the costs and help vulnerable persons.”

Franks, whose late brother had Down syndrome, warned of the dangers presented by the current health care reform bill, H.R. 3200.

“We run into one reality: the rationing of care because you have to decrease the costs,” said Franks. “There is always, always rationing and restrictions, which fall on the most weak.”

He shared the story of a baby born without a palate, requiring 11 surgeries before the age of 9 to survive. Fed with an eye dropper and a cup, this baby probably would not have had a chance under a government-run health care system where the weakest are given the lowest priority, he said, identifying himself as that baby.

“A society is measured by how it cares for those who are down, in the shadows and in the twilight of death,” he said. “Those in the shadows have the greatest things to say and God’s greatest gift is given to them.”

Dr. Marty McCaffrey, a pediatrician and father of 9-year-old Shea, who has Down syndrome, traveled from North Carolina with his daughter to send a message to Washington.

“I speak to you today in the hope that we can prevent the destruction of an arguably imperfect but inarguably the best health care system in the world,” McCaffrey said. “We have been assured that that government restructuring of health care will not require rationing. Even a simple neonatologist knows that if you increase demand, the cost for services rises.

“The enrollment of millions of new patients for care while drastically cutting funding requires either reduction of level of services offered everyone and/or limiting those eligible for care,” he said. “Rationing is unavoidable.”

The coalition said a government takeover of health care would be disastrous for the 54.4 million citizens who live with disabilities, as decisions about patient care could be made primarily on cost.

“I want my family and my doctor to control my son’s health care decisions, not a government-appointed committee,” said Kristan Hawkins, executive director of Students for Life of America and founder of Healthcare for Gunner, a coalition named for her 7-month-old son with cystic fibrosis.

“Should President Obama get his way, the life of my son, and millions across the country who are elderly, chronically ill or require expensive medical treatment, will be at the hands of some bureaucrat in Washington,” Hawkins added.

Sam Sansalone, the father of Katya, an 8-year-old with trisomy 13, a genetic disorder associated with the presence of extra chromosomal material, traveled from Canada to share his experiences with nationalized medicine.

“We had to face great dangers after (Katya’s) birth in Toronto,” Sansalone said. “Some doctors said she should be left to die. We had to fight to get the … surgery to save her life.

“America is at the crossroads of health care reform,” he said. “People must speak up. They must support only health care plans where ultimate health care decisions can be made by families – it must be family-centered health care.”

Jeanne Bolewitz, the mother of Joshua, who has Down syndrome, said she fears health reform could lead to rationing like what she saw while living in England.

“Rationing will happen just like I witnessed in England when we lived there 10 years ago and I saw rationing for care of (multiple sclerosis) patients,” said Bolewitz. “Joshua will be seen in (terms of) the dollars he drains from the system. He will no longer be my boy. He’ll be the government’s boy because of the burden he bestows. Our children will be reduced to dollars.”

Catholic Review

Catholic Review

The Catholic Review is the official publication of the Archdiocese of Baltimore.