Learn Your Special Education Laws, Special Education Rights, and Share IEP Goal Ideas

Jan 14
Avatar of Dennise Goldberg

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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10 Responses to “Occupy CHOP for Amelia”

  1. Great suggestions! However instead of marginilizing the occupy movement in your last line how about encouraging a collaboration with occupy. I have absolutely no doubt fellow occupiers would help in this endeavor. That’s what occupy is all about after all–helping our fellow man woman and child.

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  2. Is it possible that the parents have not revealed the entire story. I have read several posts regarding this and there are several holes in the story. One is why is this family travelling from TN for care in PA?There are at least 20 hospitals that perform transplants closer to them. Also one post mentions that Amelia has a congenital heart defect as well. Could this be an issue? We are only reading what an emotional and passionate parent perceived. CHOP cannot comment on this specific case or it would be a HIPPA violation. Perhaps the entire story isn’t infront of us. It just does not seem completely realistic that her developmental issues are the only reason they would not perform the surgery.

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    • Hi Chester,

      Here is CHOP’s response from their facebook page:

      We have watched with great concern the comments regarding criteria used in making transplant eligibility decisions. We understand your concerns and reactions to the Facebook postings. We strive to provide the safest possible care for our patients and we make transplant eligibility decisions based on widely-accepted, medically valid methods, with many factors considered. We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments. CHOP’s transplant programs continue to evaluate and perform transplants on some of the most complex cases in the country. We use an established framework for consistent evaluation and transplantation. Each child is evaluated on an individual basis, taking multiple medical, surgical, and psychosocial aspects into consideration. In each evaluation, we consider the possible risk and outcome of the recipient, potential donor options, as well as alternative therapies. In order to determine eligibility for transplantation, a multidisciplinary evaluation is completed by several members of the transplant team, which would include careful assessment of a patient by surgical and transplant specialists, as well as, psychosocial, and neurologic specialists. Parents and family members are very much a part of the discussion. We wish to emphasize that all determinations of eligibility for transplantation are treated on an individual basis. We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country. These communications are very important to us and provide us with an opportunity to always re-examine and reassess our approach and process. We hope that we can continue to improve and continue to provide exceptional care for children with organ failure.

      By their own admission in this statement cognitive ability is one of their criteria for eligibility. This should be enough to cause outrage considering this is a nonprofit charitable organization. That is discrimination and should be investigated by the PA Attorney General and the US Office of Civil Rights.

      I am also outraged that in 2012 the Doctor is still using the “R” word. I suggest everyone review Rosa’s Law which the President signed into law last year changing the term to intellectual disability.

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      • I see nothing that speaks to this specific case.

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      • Where do you read that cognitive ability is part of their criteria. There is no mention of what specific criteria they use. You are making a big jump in what the content of their statement reveals.

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        • Hi Chester,

          “Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status”

          This implies cognitive status is part of their criteria. They deserve to be investigated and have the truth come out.

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          • To me it states that this child was not turned away from CHOP for transplant as the parents claim because of cognitive status which is the whole point of why everyone is expressing such rage. It does not imply anything broader. If the facts are as the parents state than I am furious as well. I just suspect that they are not. I don’t see in what way CHOP benefits from not doing this transplant when they treat some of the most complicated pediatric cases in the world as well as teach about them and research them. Why single out this one sweet little girl who is otherwise healthy. It does not add up.

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          • Chester the statement put out by CHOP was very carefully worded I have no doubt with the skill of a professional attorney and or team of attorneys. What Doug points out in the wording is correct and his interpretation is exactly right. Refusing this procedure due to cognitive disability sets a precedent and we have a choice to help stop this in it’s tracks or argue and debate back and forth about the logistics of what CHOP is doing to this family.

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  3. My best wishes go out to Ameilia and her family.

    We must REMEMBER, this is not a CHOP policy in which Amelia is being refused treatment. This is a nationwide policy. If you want this changed, you must tell your state/district/county representatives.

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  4. I can see that the transplant might not be a good idea due to other medical complications but that is not what the doctor told these parents. And OK, yea, I concede that they reacted very emotionally. So remove the emotion and you still have a doctor who is rcommending to his hospital that the transplant not be approved based on Amelia’s cognitive impairments. That is wrong. No matter how you spin it. It is wrong.

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