Friday, March 26, 2010

The NJ Legislation May Have Wide Spread Effects

I met today for three hours with a representative of of NJCare (who prefers not to be named and will thus be referred here as THE REP) to discuss my concerns about this proposed adoption access bill, and discovered more reason for concern. This post is long - but read to the end and find link to a shocking document.

THE REP talked about being excited about the possibility of the NJ bill finally going through after 30 years of trying. He sees the one year veto period as negligible and feels that when all is set and done, this eighth state will be a model for others, particularly NJ and PA.

The bill approved by the Senate gives original parents one year from the date of enactment of regulations to contact the state registrar and opt for non-disclosure. The bill requires the state to conduct a national media campaign to spread awareness of the new law. [At what financial cost?]

After the opt-out period, parents will be required to fill out a form declaring whether they wish to be contacted directly, through an intermediary or not at all. [More costs.] However, parents who tell the state they don't want to be contacted will still be required to submit nonidentifying information about medical, cultural and social histories.
My original concerns follow:

5. (New section) a of the proposed S799 which hs passed the Senate.

An adopted person 18 years of age or older, a direct descendant 18 years of age or older of the adopted person if the adopted person is deceased, or the adoptive parent or guardian of a minor adopted person may obtain from an approved agency or the attorney who facilitated the adoption any family history information concerning the adopted person that is contained in that person's adoption file, upon submission of a written, notarized request to the agency or attorney....As used in this section, "family history information" includes medical, cultural and social history information provided by the adopted person's birth parent and maintained by an approved agency or attorney who facilitated an adoption.

In addition, I am also concerned about:

Page 9, line 10, section 10 (a) An adopted person 18 years of age or older, a direct descendant 18 years of age or older if the adopted person is deceased, or the adoptive parent or guardian of a minor adopted person, may request the approved agency or intermediary that placed the child for adoption or conducted an investigation pursuant to section 12 of P.L. 1977, c.367 (C.9:3-48) to provide any available non-identifying family medical history information concerning the adopted person contained in that person's adoption file.

b. Upon receipt of a request pursuant to subsection a. of this section, the approved agency or intermediary shall provide the requester with a detailed summary of any available non-identifying family medical history information concerning the adopted person contained in the person's adoption file.

A similar provision exists in the bill on page 7,line 7.

Reasons for concern and supporting evidence:

1. Mothers who relinquished their right to raise their children relinquished no other rights as citizens and are thus entitled to the same protection of the law as all other citizens. We have a constitutional right to privacy and to be "secure in our persons" and "our papers" and "effects" from access to our confidential medical/social files without our consent.

2. Relinquishing mothers shared information – at a time of great stress - with social workers, clergy, and other adoption agency employees who were providing health counseling to them. As such, it is confidential and covered by HIPAA’s clear intent just as a psychiatrist's patients' counseling would be.

3. Mothers were not specifically asked nor did they agree to provide this information for the purpose of it being shared with their children at a later date – unless a mother returns to her agency and signs a waiver of release.

4. The law does not provide the right of mothers to their OWN agency records.

5. Section 5A, ironically, calls for the adoptee to submit a "written, notarized request" to obtain this information, but does not require permission of the mother whose records are at question.

6. The usefulness of such information is medically is minimal at best. Mothers are relatively young at the time of relinquishment and cannot tell anyone what their parents would die of or even of diseases they themselves might develop later in life.

7. Mothers have an equally compelling need for medical information to be shared reciprocally with them, as it could be crucial for a mother deciding to have subsequent children, or life saving for any other children she might bear.

8. Mothers were asked personal details about their sexual life (first sexual intercourse, number of partners, number of pregnancies, abortion, attempted abortions). Revelation of such inflammatory information is not only an embarrassing violation of confidentially to the mother, but could be very harmful – rather than helpful - to the adoptee, especially being shared by a stranger.

9. Agency records routinely contain judgments about mothers. If she cried too much she was labeled "hysterical" or "out of control." If she didn't cry "enough", she was often labeled "cold" and "callous"..."uncaring."

10. Adoptees have a right to their OBC, to know the names of their progenitors. Any further information needs to be gleaned from those persons, not from those person's confidential files, just as all non-adopted do.

Adoptees justify their “right” – or need – for additional confidential medical and social records due to the possibility that they mother is deceased or unable leaving them without medical vitally important history. The fist concern is mediated by the fact that access to the OBC would secure access to a death certificate which in turn would reveal grandparents names. These are emotionally compelling arguments but gain, looking at adoptees rights in terms of equalizing them with non-adoptees, we see that many people have one or more parent who is unknown to them, has deserted, is mentally incapacitated to the point of being able to reveal accurate or useful medical history. Additionally, religious beliefs or simply very secretive persons may be inclined not to reveal their history to an offspring.

It is time for NJCare to recognize what Adam Pertman testified to, that it was time to see beyond simply thinking adopted people only want or need their medical histories, adding that having their original birth certificate and the names of their biological parents represented a much deeper need and should be their right, not only for their psychological health and sense of well-being, but also making them equal to the rest of us who always had this information.
At this meeting today I discovered that NJ has has a form that has been in effect since 1977. The form is entitled Adoption Medical History and is a 19 page form that exacts the most detailed medical history I have ever seen in my entire life for both the relinquishing mother and father, and is routinely given to adoptive parents to ensure the "pedigree" of the child.

The form is NOT completed by the mother or father, but rather by a third party - physician or other. We are trying to research this.

On the final page, there is a section for adoptive parents to sign an understanding of receipt of the information that seems to be a release of liability against the adoption agency.

No where on the form however is there any place for the mother or father to sign a release of this information which covers all possible genetic diseases, and also non transmittable or genetic facts such as abortions, having smoked pot, and STDS such as chlamydia. We are also attempting to ascertain whether there is any separate release form for relinquishing parents to sign, giving permission for this information to be shared.

I scanned the form as a PDF and uploaded it at Look for PDF icon in upper right.
THE REP assured me that once the bill passed, there was ample time during the regulations portion to make adjustments. I was not sold, especially when he suggested regulations could define vague terms such as "social history" and could even select between vital medical information and less vital and non genetic or transmittable facts included all on the same form. I saw no possibility of that as the form is already in use and being to adopters.

Read the form. I believe you will share my concerns about this violation of the privacy and confidentiality of mothers (and fathers.)

I fully support access to BILATERAL access to the OBC.

I also fully support and encourage mothers to go their agency and sign a waiver or release to revel any and all information they saw fit to share.

I also support adoptees having access to their PEDIATRIC hospital birth records, again just as any non-adopted person might have access to their own hospital birth records...but not that of their mother.

I FIRMLY OPPOSE, however, the violation of our confidentiality and privacy by revealing any medical, social or cultural information without our specific permission -- anything beyond ethnicity and age.

In cruel and ironic twist, this letter was printed in a major NJ newspaper Monday, March 22 by a "coalition" of all opposed to the bill.



Anonymous said...

kitta here:

thank you for this great post and for your work in this issue.

Many states have been violating mothers' privacy in the worst ways for decades..California also has a long(10 page, 3 column) medical history booklet with questions about every relative and every bodily organ system. Relatives have no way to consent and indeed, no way to even know this "information" is being extracted about them.

And how accurate is this "medical hear-say?" I didn't know what conditions were in my family when I surrendered my child, nor would I have been able to diagnose my relatives.

When I got my medical record from my agency a few months ago, it was inaccurate and just plain dishonest. And I had never seen it before. Yet, it was signed by my ob/gyn. He submitted it without my ever having seen it.

I had no chance to review it or correct the errors.

another important point to make is that these records were submitted at a time when we were still our children's legal parents. Many of us had not surrendered them and were trying to keep them. So, who was the information actually for??

If we had been able to prevent the relinquishment, would the agency then release our medical records to our children years later? I doubt it. it would be NO different than the marriage counselor who saw my mother when she and my father separated years ago. I cannot have access to tthose records. they are not mine.

I was a baby when the separation happened and it affected me..but I have no right to those records, no matter how much I might learn about that time in our lives.

My parents had a right to confidential counseling, and that remains their right. Those records are sealed.

Mirah Riben said...

And the NJ-ACLU has no problem with this GROSS violation of our privacy and confidentiality!

Not only were mothers young and in stress - but they had no legal representation! Talk about having our rights trampled. Oh, excuse me, what rights?

Protect us from a kick on our door and someone ASKING us directly for this info - and us having the option to say yay or nay...instead, let them just BREAK IN and steal what they want while we're not home! I feel so protected!

How ANYONE cannot see the difference between being asked, giving permission and having this info just TAKEN and shared is beyond me!

Next step is setting up meetings with the legislators in the Assembly who will be voting on this bill.

Mandy Lifeboats said...

Mirah the medical history questionaire is not attached to your PDF file. Can you please correct that? I would like to see this medical history questionaire. Thanks!

maryanne said...

Well, it looks like the spin doctors are spinning in Jersey. Good for you for not caving in to them! That must have been an interesting three hours.

As you know I do not share your concerns about adoptees getting medical and other history from agencies, but agree with you that this should not be tied to OBC access or a condition of vetoes. It is a whole other issue.

Adoptee rights legislation gives adoptees the same access to OBC that the rest of us have, no conditions, no exceptions. Anything else is not about rights but about granting priveleges to those who meet certain conditions. It is dishonest to call this "the adoptee birthrights bill".

Support for this legislation is getting thinner and thinner while the bullshit spun out by its supporters gets thicker.

Ironically none of these concessions and convoluted schemes has mollified or satisfied the real opponents of adoptee rights, as that article illustrates.

Passing something/anything is not a good enough excuse to let this deformed legislation in, and it will have disastrous consequences for other states if it passes.

I was sitting back and not commenting on this for years because of respect for some of the people involved. But given recent widely publicized statements and tactics, including one that implied that those of us who sincerely oppose this legislation because it is not about adoptee rights are the same as the "classic opponents" NCFA etc, my respect is now fading fast.

Mirah Riben said...

** MORE**

NJREP (and apparently legislators) believes that adoptees are "entitled" to this information because they were denied the same right as non-adopted persons to grow up and glean it "naturally."

I pointed out all the situations in which this is not true for MANY non-adopted persons:

- people who have one more parent who abandon
- people who are told someone is their father who is not
- people who's parents are mentally or religiously unable to tell them, or simply refuse...or are vague or not complete or completely honest

Adoptees should be made equal to others as of the age of 18. They cannot be given back the years they lost having not been raised by their natural family! We don't get back those lost years and neither do they. Adoption sucks.

Carolc said...

Mirah - I really appreciate the work you've done to shed light on the details of S799 in a more specific way.

You are the one person that has gone to the source, gotten the actual details rather than generalizations that people on both sides of this issue are making; and is now able to rationally explain the implications of this legislation and what kinds of potential fixes there may or may not be.

As an example, the fact that the detailed Medical History Form already in existance seems to include a possible release of liability for adoptive parents to sign that appears to hold the agency harmless; yet does not guarantee the same protection to the mother or father is a real concern.

This is the kind of information I believe Pam and the rest of NJCare is looking for to make this bill more palatable. Wouldn't adding the same release for the parents resolve that particular concern? Is it possible to do that before this bill goes for a final vote?

And I still don't get how they can enforce a requirement for a mother to submit information if she feels it's a violation of her privacy under HIPAA or otherwise. They won't even be able to find many of these mothers - most of us have moved, married, remarried... etc.

I am also one of the mothers who has no problem with the sharing of medical information for adoptees. My reasons have more to do with moral obligation so I will not bother to defend them. But it seems to me that for some of these objections it should be possible to come up with a workable compromise as far as the mother's right to privacy regarding medical and social information.

Thank you so much for presenting this information without being critical of those who have a different point of view. We're all learning from this process and it's appreciated when people like you, Jane and Lorraine provide a safe forum for the exchange of ideas.

Anonymous said...


kitta here:

I couldn't access the NJ medical information questionairre in the link that was posted. I keep getting an "error" message.

Could you fix that? I really want to read that. Thank you for all of your hard work.

ACLU doesn't understand much about medical privacy or confidential counseling laws if they cannot understand this issue. Third-parties are not supposed to release protected information without a consent. And we cannot consent unless and until we have a chance to see or read, or write, ourselves, what it is we are consenting to release.

No social worker can interpret my family's medical history. Even my doctor wrote things in my file that were untrue. Diagnoses are not always correct.

I also agree that access to OBCs is a separate issue from access to non-identifying information and the two issues should not be included in this bill.

Mirah Riben said...

Kitta -

Use either the tinyurl link in the pst or this one:

Either one takes you to an page.

When that page opens - in the upper right part of the WHITE section there are three icons.

Click the left most (adobe) icon and it will slowly download the 19 page PDF file.

It was the best I could do.

Mirah Riben said...

Bastard Nation opposes S799 for many reasons including:

"Nobody says that medical histories are a bad thing, but they should be acquired voluntarily, not through legislative filching and intervention. I want to make clear, too, that adoption –related health, psychological, and emotional issues are very real for some adoptees, but those problems are the consequence, not the cause of government seizure and sealing of our documents. If you want to ease the consequences of adoption secrecy and sealed records you root out the rot and expose it to the light, not continue to spread it with new anonymity laws. So drop it right now! The obc includes no medical history, and nobody who gets their obc is guaranteed a medical history will follow. Adoptees are not special! Plenty of not-adopteds lack medical histories. also."

Seems to me that kinda knocks the wind out of the argument that those of us who are concerned about the violation of the rights of ALL people - including those who relinquished children for adoption - are not evil, selfish, self-centered, adoptee haters...when the most radical adoptee org agrees with us.

Anonymous said...

Kitta here;

"that those of us who are concerned about the violation of the rights of ALL people - including those who relinquished children for adoption - are not evil, selfish, self-centered, adoptee haters...when the most radical adoptee org agrees with uswhen the most radical adoptee org agrees with us."

I agree, Mirah. These privacy rights apply to everyone, and BN can see it, too.

Privacy rights are protected by the 4th Amendment. When I first started to work in records legislation I asked my father(an attorney) for constitutional arguments that would help us.

He immediately said," Use the 4th Amendment right to privacy. The relationship between natural mother and child is a private relationship that has been tampered with by government interference, through the seizure of the birth certificates, and falsified '"amended" versions. Mothers and children should have a right to know each others' identities.

The government, in adoption proceedings, has deliberately hidden mothers and children from each other by use of sealed records and falsified birth certificates which are withheld from the children and natural parents. This does not protect their privacy, it actually violates their privacy because the birth relationship is a private relationship. Mothers and children are part of each other's privacy...they started out together, not apart from each other and it is necessarily so."

Cully said...

wow... Maryanne, your post of March 27 at 4:28 says it all. What Mirah has done - going through the bill and picking out the changes (as well as pointing out what has been around for a long long time) is what we need.
Many of the people who oppose access do so based solely on what they are told... guess what, some of the people who support bills do so solely on what they are told. People don't want to spend the time reading and asking questions.

Cully said...

Kitta, what a wealth of info you are!! and the fact that things are written and said by "third parties" (social workers, doctors, nurses etc) are just untrue really needs to accepted by everyone. None of us are perfect - we're all doing the best we can (even that stupid bi_ch that told me my mother didn't want to meet me). But I still have to ask, Why, after all these years, can’t we all work together? Some of us have been successful and some not – there a lessons to be learned in both camps. Why don’t we pick our battles? Why don’t those who are being used to bar the door to access become the battering rams to knock those doors off their hinges for good? (Heaven knows the opposition has been using birth-Mothers – and the fathers that stuck around – as whipping boys and scapegoats for decades upon decades… Let’s fricking turn the tables on those bastards. Let's put out "clean" bills - we want Adult Adoptee Access to their OBCs (and that means all adult adoptees - past, present, and future)... and let's not let anyone confuse the issue or smudge the lines so that anyone's privacy comes into question.

Cully said...

and over at the op-ed piece...
georgiamom2 ROCKS!! If you are reading this... Thank You!!

Cully said...

one more thing... at the op-ed site:
georgiamom2 ROCKS!! If you are reading this - Thanks!

Anonymous said...

Kitta here:

Cully, my doctor submitted a medical report on me that I never saw. he answered questions about my "history" without consulting me nor asking for my consent. He also submitted information about my child's father and his relatives without ever asking the man any questions.

I know this because the natural father wasn't there... and I never supplied the 'information" that the doctor wrote on the form.

All of this so-called "history' was written on a form that was headed 'Report on Natural Mother'

Anonymous said...

Kitta here"

Cully, I will be honest with you. My child wanted me to find him. I always had that feeling, and it turned out to be true.

I am a mother who searched and found, when my child was 21 years of age.

Access to OBCs for adopted people, with no access for mothers to their children's new names just doesn't fit into my family's situation.

While I believe that adopted people should have access to their OBC, I consider myself to be a natural family preservationist. I also believe in family restoration, from either side, and I believe that laws should be changed to reflect that.

So, I work more on family preservation and mutual access rather than unilateral access.

But, I wish you well in your fight.

Mirah Riben said...

I, of course, as the name of this blog states, am also a family preservationist. I would love to see what was passed in Ontario. But I will oppose legislation that gives access only to adoptees as a first step. What i will not support is legislation that gives them access and stomps on our right to privacy. Not giving me an additional right to access is one thing, but further violating my rights is quite another. That is where I draw a firm line in the sand until such time s more mothers are willing to stand up and demand what should be ours - inasmuch as 90% only relinquished our rights for our children's MINOR YEARS anyhow!

But as it is now, in this country, even a poultry number of adoptees are willing to stand up for their rights. So basically I leave that whole issue up to them and only get involved when their actions are trampling my/our rights.

I am far more committed to moving forward than going backward and putting an end to falsified BCs. THAT argument is clear and straight forward and cannot be twisted into protecting anyone other than the baby brokers and the adoptive parents.

RussiaToday Apr 29, 2010 on Russian Adoption Freeze

Russi Today: America television Interview 4/16/10 Regarding the Return of Artyem, 7, to Russia alone

RT: Russia-America TV Interview 3/10

Korean Birthmothers Protest to End Adoption

Motherhood, Adoption, Surrender, & Loss

Who Am I?

Bitter Winds

Adoption and Truth Video

Adoption Truth

Birthparents Never Forget