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

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

Parents of disabled and special needs children are particularly concerned about a health care system that could end up rationing care for some people, including their own children.

( – 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.

“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.

disabled children, health care reform

Marty McCaffey is a neonatologist and the father of Shay, 9, who has Down Syndrome. McCaffey said 90 percent of women who are diagnosed as carrying a child with Down Syndrome terminate the pregnancy. ( Starr)

“I don’t want to draw attention to myself,” Franks said. “I want to draw attention to all these people and remind each of us, no matter who we are – I’ll quote a Democrat. He said that a society is measured by how it treats those in the dawn of life, those in the shadows of life and those in the twilight of life,” Franks said, referring to Hubert Humphrey.

Kristan Hawkins, whose son Gunner was diagnosed with cystic fibrosis at two months old, said her research on her son’s condition led her to discover that government health insurance in Canada and some European countries don’t cover the special medication he needs.

Hawkins started a Web site,, and coordinated a group of parents from around the country who share her concerns. She said she came to Washington to lobby against government-run health care.

“I want my family and my doctor to control my son’s health-care decisions, not a government-appointed committee,” Hawkins said.

Barb Farlow said her daughter, who had a devastating genetic condition, died 80 days after she was born and 24 hours after she was taken to a Canadian hospital for surgery.

“We later discovered that no diagnostic tests had been done and a ‘do not resuscitate order’ was written before we had provided consent,” Farlow said. “The discovery that our fundamental parental rights had been violated in such a manner without cause left us shocked and devastated.

“Sadly, we believe that to our (Canadian) medical system, Annie was not a child but a label with associated statistics and a price tag,” Farlow said. “We will never know Annie’s potential, and so we grieve her death and the life she might have had.”

Mary Kellett said she was glad she could fight for treatment for her 4-year-old son, Peter, who was born with a chromosomal abnormality.

“We were told to wrap him in a blanket and let him die,” Kellett said. “We were told there were no survivors with Trisomy 18 beyond two weeks.

“We fought to give Peter the ordinary care our other children would be given, and we thank God every day this precious little boy is here blessing our family,” Kellett said.

Marty McCaffrey, a neonatologist and the father of a 9-year-old daughter with Down Syndrome, said he sees problems with Democrats’ vision of health care reform:

“We have been assured that government restructuring of health care will not require rationing, affect current services, create distribution panels, nor subsidize abortion,” McCaffrey said. “Even a neonatologist knows that if you increase demand for services, the cost will rise. If the health services budget is drastically cut while larger numbers of patients are added to the roles, rationing is unavoidable.”

disabled children

Erika Kelley and her 2-year-old son, Samuel, were in Washington, D.C., on Tuesday to explain how a government-run health care system could mean rationed care for Samuel, who has cystic fibrosis. ( Starr)

McCaffrey said 90 percent of women who are diagnosed as carrying a baby with Down syndrome terminate the pregnancy – a number he said could grow even larger under currently proposed health care reform.

“Many will never meet a child with Down Syndrome,” McCaffrey said as he held his daughter Shea’s hand.

Erica Kelley’s two-year-old son also has cystic fibrosis. She said he is doing well because of the outstanding care he receives through her husband’s employer-provided insurance.

“The people of the U.S. have access to the best medical care in the world,” Kelley said.

Eileen Benthal’s daughter, Johanna, has congenital brain malformations. Johanna has had 70 surgeries, mostly on her brain, in her 13 years of life. Her condition causes stroke-like symptoms, cognitive and motor delays and seizures.

health care reform, disabled children

Eileen and Johanna Benthal appeared at the press conference to express opposition to a government-run health care plan, which Eileen said could impact the care her daughter receives for her disability. ( Starr)

Benthal said Medicare is her daughter’s secondary insurance and that treatments and medications are regularly denied. “I shudder to think of how we would fare with (Medicaid) as primary (insurance),” Benthal said.

Rep. Cathy McMorris-Rodgers (R-Wash.) also attended the conference and said she shares the parents’ concerns about a government-run health care program.

“We wanted to just give you a perspective of a community of people who are watching health care reform very closely and want to make sure that the reform that ultimately passes Congress doesn’t leave a very important population behind,” McMorris-Rodgers said. “These are people that are dealing with health care on a daily, if not an hourly basis — and I know this because of my own experience.

“I have a son who is two years old,” McMorris-Rodgers said. “He has Down Syndrome and it means we are in the doctor’s office a lot.”

Franks said the community would be harmed by a government-run health care plan.

“I truly believe with all my heart that government-run health care will diminish all of those people, those in the dawn of life, the unborn,” Franks said. “This will be the largest expansion of abortion since Roe versus Wade.

“Regardless of the debate that has occurred, we’re taking the lives of 4,000 children every day, and if that’s the administration’s health care plan for the unborn, I don’t think that’s a good one,” Franks said.

The parents distributed a white paper at the press conference detailing the effects of health care rationing. They also sent a letter to President Barack Obama and leadership in the House and Senate expressing their opposition to a government-run health care plan.

2017-01-08T20:42:50-05:00 September 16th, 2009|Categories: In The Media|0 Comments

About the Author:

Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs. Eileen can be reached at

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