NJ Senate President Sweeney wants to prevent hospitals from denying organ transplants to people with disabilities

From The Star-Ledger in NJ:

TRENTON — Outraged over reports about a renowned hospital in Philadelphia declined to perform a kidney transplant on a Camden County child because she is intellectually disabled, Senate President Steve Sweeney said Jan. 19 he planned to introduce a bill making it illegal for a New Jersey hospital from denying life-saving health care to disabled people here.

The parents of 3-year-old Amelia Rivera (pictured) of Stratford said a physician from Children's Hospital of Philadelphia told them last week the child would not be eligible for a kidney transplant because she is "mentally retarded."

"There is no doubt that this story has highlighted a seriously overlooked issue in the country: Hospital policy regarding organ transplants for people with developmental disabilities," said Sweeney, whose daughter has Down syndrome.

"People with developmental disabilities should not be treated as second-class citizens,'' he said."Their disabilities do not make them any less human or worthy of respect and common decency. I will immediately be putting forward legislation that would prevent this kind of treatment from ever happening to someone who seeks care at a hospital in New Jersey."

In a statement, the hospital said it has yet to review the proposed bill.

"Senator Sweeney has been a longtime friend to CHOP and shares our interest in providing children with access to the best medical care available," according to a hospital statement. "Although we have not had an opportunity to review the proposed legislation, we agree with Senator Sweeney that the issue of non-discrimination is an important one and we look forward to working with him on this important matter."

According to the blog post written by Chrissy Rivera, her daughter has Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Her blog may be found at http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Céline R. Fortin, associate executive director of the Arc of New Jersey, said she's never heard about a New Jersey hospital or doctor refusing to provide an organ transplant to a person with developmental or intellectual disability.

But knowing that discrimination can occur, The Arc has produced a position paper on the topic. "A person with a disability should have an equal opportunity to receive life sustaining treatments including organ transplants,'' according to the Arc's position paper. "People with intellectual and/or developmental disabilities deserve access to health, mental health and dental professionals who have received specialized training to understand and respond to their needs."

"If the facts are as they have been reported" about Children's Hospital, "then it's outrageous,'' Fortin said, adding that she has advised people to be cautious about jumping to conclusions because the hospital has not commented directly on the case. "We only know one side of the story."