Occupy CHOP for Amelia

January 14, 2012 in Special Education Advisor Blog by Dennise Goldberg

By now most of you probably know who Amelia is. If you don’t, she is a little girl with Wolf-Hirschhorn Syndrome that needs a kidney transplant and the Children’s Hospital of Philadelphia (CHOP) has refused to perform the life saving surgery. They have decided against performing the surgery because Amelia has an intellectual disability. If you haven’t seen the blog I implore you to take a few minutes and read her Mother’s story. I have so many problems with this story I don’t even know where to start. The ignorance of these Doctors is mind blowing but here is the section of the blog that blows my mind:

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

Make sure you read the exchange above a couple of times and let it sink in. This isn’t a story about not being able to find a kidney for Amelia!!! This is a story about a group of Doctors and a Hospital that have decided they will not perform a life saving surgery because the child has a disability!!!! CHOP has decided that children with a disability have a poor quality of life and thus are not worthy of saving. This is unacceptable, and the first thing you can do is sign this petition. The second thing you can do is go on CHOP’s facebook page and tell them what you think of them.

Now that you have done that let’s talk about how this should play out if we all really want to help Amelia. You see CHOP is a nonprofit charitable organization and according to their patient bill of rights all patients and families have the right to, “Receive care, treatment and services regardless of race, color, age, sex, national origin, religion, handicap, disability, sexual orientation, who pays for care or your ability to pay.” The website also says “Our commitment to improving the health of all children has remained constant over 150 years.”

So you see CHOP, in my opinion, has strayed from its mission to help all children and to not discriminate. These are offenses that should be reported. The first place to start reporting this would be the Pennsylvania Attorney Generals office. It is their obligation to investigate and revoke CHOP’s nonprofit status if they have strayed from their mission. I am not an attorney but it also seems to me this is discrimination under the Americans with Disabilities Act. I hope the parents consult an attorney, and if actionable, file a discrimination complaint and lawsuit against CHOP. The problem with either of these options is they will most likely take time Amelia does not have.

So this brings me to my final suggestion. According to Steven M. Altschuler, M.D. CEO of CHOP in the last annual report, “I’d like to provide a special recognition to our donor community. Your support is the engine that fuels our incredible staff s visionary ideas and helps us fast-forward them into real-life solutions. We cannot say it enough: thank you for your unwavering generosity and for traveling with us on the journey to improve pediatric healthcare.” The business of CHOP is not saving lives, but rather fundraising which is done through their foundation. Here is the contact information for the foundation. Let your voice be heard. Make CHOP understand that saying no to Amelia will not only hurt this family it can have substantial repercussions on their fundraising. How do you get a nonprofit to listen, you start with the foundation!!!! So I tell you all, forget Occupy Wall St. it’s time to Occupy CHOP.

I wish this family the best and hope they will find a surgeon willing to do the operation. Every child’s life is valuable and it’s not up to any of us to decide who should live or die.


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