Newborn Screenings and Opt-Out Forms? - Mothering Forums

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Old 08-08-2014, 01:37 PM - Thread Starter
 
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Newborn Screenings and Opt-Out Forms?

I did a search for this topic in the forums, and came up empty, so please pardon me if this is redundant.

Our family recently moved to a new area, and we had an out-of-hospital birth. After asking repeatedly if there was anything that we "needed to do" after birth and being told that there wasn't, I discovered some regulations regarding newborn screening.

I suppose that we're "no-vax" for now (we walk the line with selective/delayed with our older child - we tend to look at risk factors over anything else) and we see a ND "as needed" (ND has seen the new baby).

The regulations allow you to opt-out for religious reasons, but require you to submit paperwork opting out of the newborn screening. I know that you must be very careful regarding what you sign as far as refusing the AAP vaccination schedule - is there anything that I should amend or add to this signing agreement?

For what it is worth, we had a hospital birth in a different location for our older child and weren't made aware of any option of refusal for newborn testing or vaccinations. We consider ourselves to be far more educated now, in the sense that we research things rather than approving them "because the doctor said so". My husband and I are not carriers of any disease that can be tested (sickle cell, Tay-Sachs) and did not receive any "red flags" or positive results from our older child's NB screening.

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I have received and read the parent educational brochure printed on the newborn screening blood test. I understand that these disorders are easily detected by testing a small blood sample from my baby's heel.


I have been informed that all newborns are required by law to have a newborn
screening test collected.


I have been informed and I understand that this screening is done to detect these disorders because symptoms sometimes do not appear for several weeks or months, and irreversible damage can occur before symptoms become apparent to a family or
a physician.


I have been informed and I understand that, if untreated, these conditions may cause permanent damage to my child, including mental retardation, growth failure, and even death. This permanent health damage can be prevented through early detection
and treatment.


I have discussed the newborn screening test with my physician or health care provider and I understand the risks to my child if the screening test is not completed.


I understand that the law allows a parent or guardian to refuse newborn screening based on the grounds that such examination conflicts with a person’s religious tenets and practices. I elect to refuse newborn screening on that such testing of my infant conflicts with my religious tenets and practices. My decision was made freely and I accept the legal responsibility for the consequences of this decision.


Thank you for your help!

e

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Old 08-10-2014, 08:21 PM
 
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I've no idea but maybe post in the general health forum? Or do you know anyone else who has done this in your area? Maybe ask the provider who you delivered with? I'm sorry I can't be of more help. I hope you are able to get further info soon!

Best wishes,
Sus
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Old 08-10-2014, 09:04 PM - Thread Starter
 
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Originally Posted by mama24-7 View Post
I've no idea but maybe post in the general health forum? Or do you know anyone else who has done this in your area? Maybe ask the provider who you delivered with? I'm sorry I can't be of more help. I hope you are able to get further info soon!

Best wishes,
Sus
Thank you for at least responding!

I didn't post this in General Health because I suspected that I'd be raked over the coals for wanting to opt-out. I might post in Unassisted Birth, though, as we did have an (unplanned) UC (planned HB) and I'm sure missed a fair bit of whatever would have happened had baby been slower/care provider been faster.

We moved to this area relatively recently, so until I searched on my own, I wasn't even aware that having the screening (or submitting an opt-out) was a regulation here. I did ask my care provider if there was anything that I needed to do after the birth, and the screening never came up in discussion (care provider knew that we weren't planning on vaccinating at birth or doing any of those typical things) with either birth care provider or the care provider that our child saw for his well-baby visit (due to the move, no one in our family has a regular health care provider here, although we will likely use the provider whom we saw for the well-baby).

I know that there is discussion here regarding vaccination opt-out forms that care providers will encourage parents to sign, and that one must be cautious with regard to these forms because many of them basically say that the parent understands that s/he is negligent and acting against medical advice, etc. We do have support from both care providers mentioned above with regard to our stances on birth, vaccination, and general health issues. I just want to have the same caution with regard to the screening opt-out form - if I do have to sign a series of opt-out statements and submit them to the "authorities," I want to amend them as necessary, because I do NOT agree that I am being negligent in any way by opting out of this screening.

Thank you!

e

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Old 08-11-2014, 01:30 AM
 
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Who is asking you to sign the waiver?
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Old 08-11-2014, 08:02 AM
 
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I am not non-vax but since this question is not exactly vaccine related, I will chime in (and will not rake you over the coals!). :-)

There are two newborn screenings in our state that I am aware of. One is the PKU and the other is a newborn hearing test. I think you can decline the PKU in my state. I think many non-vax and homebirth families opt for the PKU but I do understand that there are some religious or ethical objections to even these sorts of screenings. I do not think PKU in my state is "required" so opting out is not something you would have to do here.

The hearing test is another matter. I was fine with the hearing test, although it was a total pain. Here it is required (in some way) and is normally done as a routine thing in the hospital. Homebirthers get a letter in the mail telling parents that they are required to have it done. I don't remember the exact wording but I got the impression that I would have put up a bunch of red flags if I didn't have it done (though I don't have any religious exemption to speak of so I think it's different for you).

I think a more specific discussion with your MW or ND may be in order here so you can establish specific laws in your state. Who are you to submit this letter to? Is it in response to an inquiry? Do you have any religious leaders/peers that you can talk to about this?

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Old 08-11-2014, 08:09 AM
 
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*Also, I don't know how old your infant is but the PKU is time sensitive, I believe. You likely no longer need "permission" not to have it, as it is beyond the point where you could get it anyway. Whether it is better to just respond to an inquiry or be preemptive is an interesting question.

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Old 08-11-2014, 02:01 PM - Thread Starter
 
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Who is asking you to sign the waiver?
I believe that it is the law where we live to either have the screening test (and have the results on file with the Department of Health) or to submit the opt-out waiver (and have a copy on file with the DoH). I was not aware of this and actually stumbled upon it after a bit of internet searching.

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I think a more specific discussion with your MW or ND may be in order here so you can establish specific laws in your state. Who are you to submit this letter to? Is it in response to an inquiry? Do you have any religious leaders/peers that you can talk to about this?
I believe that I retain the original and the copy goes to the DoH. It is basically a form that I fill out with the baby's name and information, and it says that I choose to opt out of the newborn screening. The quoted material in my original post is what the form says - and then there is a space for me to sign and date the bottom, and then space for a witness to sign and date as well. We haven't found a religious community here yet given the move, and I don't know of anyone who has explicitly opted out of the screening (the screening hasn't come up in discussion at any point, and I was not aware until I searched online that it was even the law).

We haven't yet submitted our paperwork for the birth certificate, as we need to do the paperwork itself with our midwife, who had a family emergency soon after our birth. We will do the paperwork when we meet with her. I would rather do the screening opt-out preemptively rather than raise some flags when we submit the paperwork for the BC. And yes, I do believe that we are beyond the point where a PKU test would be performed/accurate. I don't think they'd take "Oops!" in lieu of either test results or the opt-out form, though.

Were it not explicitly law, I wouldn't care. I do have paperwork in my possession that states that the baby was seen for a well-baby check, and is signed by the care provider.

I know that many parents who choose to deviate from the AAP recommended vaccination schedule are asked by their health care providers to sign a form with a series of written statements, similar to the opt-out form that I must sign to be in compliance with the law.

I have no problem signing such a statement, but I just want to ensure that it is on the "up and up" - that I'm not admitting any sort of personal guilt or negligence on my part by signing the opt-out form without amending any of the statements, if needed. If what I quoted in my OP supports my parental authority, then I am happy to sign the form as-is. If what I quoted in my OP basically states that I am a negligent parent, then I would like to amend the form prior to signing. The quoted text in the OP is the actual copied-and-pasted text from the opt-out form/waiver.

Thank you for your responses and help! I sincerely appreciate it. There is so much information about opting out of the vaccine schedule, but very little with regard to newborn screenings, and what is legally required seems to differ from one location to another.

e

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Old 08-11-2014, 04:05 PM
 
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Considering that you asked about requirements, were told there were none, then came across the info by accident when it was too late for testing anyway it WAS an honest oops, right? I don't see any problem with signing a statement to that effect instead of the waiver. You might have to ask your provider to back you up on the testing window, though.

We had a similar issue our homebirth and the hearing test, minus the waiver. I didn't know it was required by the state and it took us 6 or 7 weeks to get the birth certificate ( took 10 days to name her and then the only registrar in our town was on a long vacation), so by the time the health dept started contacting us it was too late to get an accurate result. We did try twice because I was afraid to buy trouble; there was very much a "bad mommy" tone to the lecture when I told the Health department worker that we had complied with the test once and were comfortable with the lack of results as it was obvious she could hear. After the second try I had the audiologist write on the chart that although a result couldn't be obtained no further testing was needed and kept a copy, just in case. Even after that they only stopped calling me when I started sending them the benefits rejection letters from my ins. Co. along with the bills.
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Old 08-11-2014, 04:55 PM
 
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If you don't feel comfortable with what the pp'er said about it being an honest oops, then in the absence of other info, I'd consider finding a lawyer to help you word it or check it or whatever makes you feel comfortable. I realize finding the right attorney for this would be no small feet, but reading your last message, that's what it sounds like will make you comfortable.

Best wishes,
Sus
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Old 08-11-2014, 04:59 PM - Thread Starter
 
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Considering that you asked about requirements, were told there were none, then came across the info by accident when it was too late for testing anyway it WAS an honest oops, right? I don't see any problem with signing a statement to that effect instead of the waiver. You might have to ask your provider to back you up on the testing window, though.

We had a similar issue our homebirth and the hearing test, minus the waiver. I didn't know it was required by the state and it took us 6 or 7 weeks to get the birth certificate ( took 10 days to name her and then the only registrar in our town was on a long vacation), so by the time the health dept started contacting us it was too late to get an accurate result. We did try twice because I was afraid to buy trouble; there was very much a "bad mommy" tone to the lecture when I told the Health department worker that we had complied with the test once and were comfortable with the lack of results as it was obvious she could hear. After the second try I had the audiologist write on the chart that although a result couldn't be obtained no further testing was needed and kept a copy, just in case. Even after that they only stopped calling me when I started sending them the benefits rejection letters from my ins. Co. along with the bills.
It really was an honest oops, yes. But if time wasn't a factor, we still wouldn't have the (invasive) screenings done. I am not opposed to a hearing screening, although I am not concerned.

I don't want to cause any problems with or for my birth care provider - from what I can tell, she wasn't aware that it is actually law/applicable to babies born outside the hospital. I believe that local "conventional" care providers would address the screening at an early well-baby visit, but our birth provider was aware that we were pursuing alternative care. I spoke with her between replies and she said that she usually sends a handwritten note regarding the screenings along with the BC when it is submitted. I e-mailed her the link to the law and the screening booklet PDF, and she will review it. We will hopefully meet within the next week or so to complete the BC paperwork. (We took quite some time to name this baby, too - another reason why we didn't complete the BC paperwork at birth.)

Regardless, I'd rather be viewed as a conscientious but dissenting parent rather than a negligent/ignorant one. I suppose I'm a bit more concerned about that due to particular experiences that I had regarding my firstborn (others assumed that I was stupid/ignorant with regard to my fringe parenting decisions and only making those choices due to youth and rebelliousness).

There's such an attitude of "this is how things are done" when it comes to children and conventional medical care, and it is rather difficult for anyone who wishes to deviate from the norm.

Thank you so much.

e

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Old 08-11-2014, 09:57 PM
 
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Ah, I understand, I'm sorry they gave you a hard time with your first. Hopefully someone can chime in on the legal document. I just noticed what forum this is in-surely someone here has researched refusal forms.
Funny, we did do the newborn metabolic screen because of DH's family history and it was a real hassle to get info on it. Seems like I had a dozen conversations that went in a circle "where can I get my newborn screened?" "The hospital does it at birth" "she'll be born at home...." <crickets chirping> "tell your obgyn to send an order to the hospital where you give birth" rinse and repeat. For a supposedly do or die test they sure don't want to make it easy to actually get done in my state. Our family doc eventually had to write a lab order as if it had been done and the results inconclusive to get an outside lab to do it.
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Old 08-11-2014, 11:18 PM - Thread Starter
 
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Wow.

Yes, that is why I posted here - I could have sworn I saw information or topics regarding forms that individuals were asked to sign as part of their physician's practice, and important amendments to make to those forms.

I am meeting with my birth care provider tomorrow to finish up some paperwork, and I believe that she'll advise me at that point. I will probably just do as she mentioned and submit some sort of handwritten letter, but get her opinion on the official opt-out form and have it "in my back pocket" so to speak. It's silly that I'm a bit nervous about all of this, but I'm really the only person in my family who prefers alternative medicine over conventional medicine in a prevention sense, and (to another poster's point) I actually worked for several years in the legal field (and can normally decipher legalese), but I definitely appreciate the wisdom and experience of those who have gone before me in this area.

As an aside, it's so funny having discussions with the general public regarding out-of-hospital birth. I don't know about you, but a fair number of my friends are homebirthers, and it seems so normal to me that I often forget that it's seen as "fringe" or "weird." A neighbor asked me what hospital I planned on using, and I answered, "I'm not." The neighbor then looked puzzled and asked if I would be leaving to give birth in my hometown. Apparently, not using a local hospital clearly means that I'm using a hospital elsewhere. Sigh.

And thank you so much for all of your help and reassurance. I sincerely appreciate it.

e

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Old 08-12-2014, 06:31 AM
 
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Yes, and you may want to ask the MW about whether you are interpreting the document you found correctly. It may well be that its primary intention is to be sure that all parents have access to the screening and/or provided by the state to hospitals and doctors to encourage patients to sign for legal protection. They may not be required by you just because they are available online, yk? Although I did do screenings, I did not vaccinate either of my infants, born in different states (on opposite coasts). There was no physician paperwork whatsoever - although I do think there was something I was asked to sign in the hospital (HB transfer). I just declined. This was not required of me - but requested by the hospital for legal or bureaucratic reasons.

As for forms from private physicians, the first question I would ask if being asked to sign something like that would be if I was legally required to sign something and what the consequences of not signing it are. My guess is the honest answer to that question would be "no" and "nothing" (or if you're in an area hot to punish alternative folks, maybe the answer will be "find a new physician" and if you are in the position to do so, maybe that's not a bad idea).

Good luck and congrats on your new baby!

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Old 08-12-2014, 09:58 AM - Thread Starter
 
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Yes, and you may want to ask the MW about whether you are interpreting the document you found correctly. It may well be that its primary intention is to be sure that all parents have access to the screening and/or provided by the state to hospitals and doctors to encourage patients to sign for legal protection. They may not be required by you just because they are available online, yk? Although I did do screenings, I did not vaccinate either of my infants, born in different states (on opposite coasts). There was no physician paperwork whatsoever - although I do think there was something I was asked to sign in the hospital (HB transfer). I just declined. This was not required of me - but requested by the hospital for legal or bureaucratic reasons.

As for forms from private physicians, the first question I would ask if being asked to sign something like that would be if I was legally required to sign something and what the consequences of not signing it are. My guess is the honest answer to that question would be "no" and "nothing" (or if you're in an area hot to punish alternative folks, maybe the answer will be "find a new physician" and if you are in the position to do so, maybe that's not a bad idea).

Good luck and congrats on your new baby!
Thank you all so much. You've been incredibly reassuring.

I did see this article and thought that it was very interesting and raises good points - in that light, I suspect that I would be fine signing a handwritten statement that satisfies the legal requirement. I tend to want to "cross my t's and dot my i's" especially where (like you) I am living in an unfamiliar location and not really sure of what is required of me.

Have a wonderful day!

e

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