Workshop 3.1: Information Sharing Prior to Adoptive Placement: What is Required and What is Ethical?

Ethics and Accountability Conference
Sponsored by Ethica and Evan B. Donaldson Adoption Institute
October 15-16, 2007

Bullet points for discussion during Workshop 3.1:

• What do prospective adoptive parents have a right to know?



• What medical, social and background information should professionals be required to find, share with, and interpret for prospective adoptive parents?



• How can ethical practice in sharing information with prospective parents best be promoted?

Panelists:

Bruce Boyer is a Clinical Professor and Director of the Civitas ChildLaw Clinic of the Loyola University Chicago School of Law. He has taught and practiced in the area of children’s law for almost twenty years, specializing on issues in the areas of child welfare, child custody, and adoption. He also has taught courses in juvenile law, trial advocacy, ethics, and administrative law. Professor Boyer is the author of numerous articles on issues relating to children and the law, includingethical issues in representing parents in child protection hearings and the right to counsel in termination of parental rights cases. He is currently a member of the Evan B. Donaldson Adoption Institute’s Board of Directors and a member of the Illinois Supreme Court Commission on Professionalism. He has served as Chair of the American Bar Association’s Steering Committee on the Unmet Legal Needs of Children. Prior to his position at Loyola, Professor Boyer taught for 12 years at the Northwestern University School of Law in Chicago, where he served as Supervising Attorney of Northwestern’s Children and Family Justice Center.

Dr. Dana Johnson is Professor of Pediatrics, member of Division of Neonatology and Director of Research and Education for the International Adoption Clinic at the University of Minnesota. Dr. Johnson’s research focuses on the short- and long-term effects of early childhood institutionalization on child health and development. Dr. Johnson serves on the Editorial Boards of Adoption Quarterly and Adoptive Families Magazine and is a Senior Research Fellow in the Evan B. Donaldson Adoption Institute. He has authored over 200 journal articles, book chapters and abstracts.

Nora O’Farrell is the Director of Adoptive Families Together (AFT), a parent-run program of the Massachusetts Society for the Prevention of Cruelty to Children (MSPCC). As director of AFT, Ms. O’Farrell oversees the provision of education, advocacy, training, and support to families, professionals and communities about the unique circumstances inherent in the adoption experience. Her experience includes collaboration with child welfare agencies, working with children and youth with behavioral health issues, and providing post adoption support for families.

Johana Oreskovic is the Director of Post-Professional Educational Programs and International Students Services at the University at Buffalo Law School where she also teaches courses in adoption law. Her primary interest is the regulatory framework within which international adoptions are conducted. Professor Oreskovic has widely lectured on the use of the Immigration and Nationality Act’s visa fraud prosecutions and child trafficking for purposes of international adoption. She is a member of the Board of Directors of Ethica.

Dana Johnson
Dr. Johnson was trained as a neonatologist. A little over 25 years ago occurred Indiana’s Baby Doe case involving a baby born with Down’s Syndrome. The parents were counseled by two physicians. Their obstetrician had experience with raising a handicapped child in his own life. This doctor said the child would lead a painful and miserable life. Their pediatrician said the opposite, that the child could live a happy life. The baby could not eat, so by not treating the child, the child would starve. The Indiana court system said the family made a choice between two competing opinions and the parents could choose. The baby died while the case went to the Supreme Court. In response, the Reagan Administration enacted Baby Doe Regulations which said food could not be withheld from children because they were handicapped. This infuriated the physician community for intruding into the decision-making process. In the Baby Doe case, there was not a well-reasoned process in decision making because bad info was provided to the parents.

Our response at that time was to suggest that we have ethical propositions on which to base decision making. That might be something to apply to ethical decision making in the adoption context:

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  What do we believe about the children, the obligations of prospective adoptive parents and obligations of the agency? Starting with the preamble of the United Nations Convention on the Rights of the Child, a child has the right to grow up in permanent family and add to that: “where their needs are met.”



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  Primary obligation of parents: to be involved and make a decision



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  Primary obligation of the agency -- advocate for the child. The decision should be child centered.



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  A decision to adopt requires sufficient assessment and parental involvement in the decision-making process. There needs to be a conscious decision-making process and not be treated like a matter of fate. Parents need access to those who can help them make a decision. The agency should be an advocate for the child by obtaining the necessary information for the child and giving it to the prospective adoptive parents in an understandable form. They need to facilitate the family’s decision as to whether they can parent that child. And they need to provide sufficient time to make that decision. It is unethical to provide 24 hours and say another family is waiting. Agencies can’t abandon children who they find difficult to place.



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  What information is really helpful? What families are concerned about at the time of adoption is not the information they are concerned about 5 years later. Parents become interested in behavioral issues 5-10 years after adoption. Some information is more helpful than others. For example, apgar scores are useless. However, nice pictures are very helpful. For example, with photos, can predict fetal alcohol syndrome much better. With respect to preadoption evaluations, we need to develop evidence-based information that will help us predict and help families make a decision. Head circumference at the time of arrival, length of institutionalization and growth after arrival all help predict IQ, but when all those factors are put in a regression equation, only 17% of information available before adoption predicts variance in IQ, and information available after adoption only gets up to 25%. We will inevitably never be able to predict what will happen in the future. So do medical evaluations help at all? Yes. He has looked at over 2300 kids adopted in Minnesota by 1600 families who had medical evaluations before adoption: found much higher rating of viewing international adoption as a way to build a family, much more appropriate expectations of what was going to be coming ahead and fewer behavioral problems in the kids.

O’Farrell

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  Adoptive Families Together is a program from a parent’s perspective but is child centered. It consists of a mix of people who have adopted through the Department of Social Services (mostly older children and mostly identified as special needs), domestic infant children and internationally adopted children. There are a lot of prospective, foster and guardian families.



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  The process should start with expectant parents. Parents must think about the child and family long before the child arrives. A child’s original family and the people who cared for them before us should be honored. As adoptive parents, it’s our duty and responsibility from the beginning to start thinking about not just about our needs.



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  Adoptive parents have a right to know everything. Ethically, prospective adoptive parents should talk to a counselor type person who can help them figure out what kind of children they can parent. Professionals in the field can then use that information to do the match. It gives expectant parents a false sense of control to base their placement decision on letters from prospective adoptive parents.



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  She advises prospective adoptive parents not to look at pictures because they will have an immediate reaction either positive or negative. Oftentimes the pictures are old. That said, prospective adoptive parents need to know the complete story on a non-identifying basis. It’s up to the agencies and attorneys to get the full story. Agencies need to take the time to really get to know the kids.



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  We are the custodians for the adopted persons, but as they get older, it is they who will determine where they want to go in terms of connecting with their wholeness. It’s not our decision to close contact, it’s up to our children. We don’t need to be threatened by families of origin.



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  Regarding post-placement services, adoption is a lifelong process for all of us. It’s a responsibility of society to do a better job of supporting all types of families. How can adoption be supported so that it doesn’t get pathologized?
  

Oreskovic
Discussed information sharing within the context of international adoptions. All her comments deal with the current legal framework. The situation may change following adoption of the Hague. The rules she is discussing will continue to apply to non-Hague countries.

1. What do prospective adoptive parents have a right to know in the context of international adoption?

They have the right to make an informed decision about whether they can parent a child based on available, medical, social and developmental info. What do we mean by a right and how can a rights-based analysis be framed in a way that takes into account the diversity of experiences and cultural norms reflected in international adoption? Her definition begins with the premise that in the Western legal system, the contours of a right are often determined by balancing the interests of all concerned in a transaction. In international adoption, this would be the adoptive parents, the child, the birth parents and possibly, the placement agency. Other things that need to be balanced are things like (1) the ability of orphanages, especially in impoverished countries to create and maintain records, (2) the ability of the sending country and its social welfare structure to the extent one exists, to gather maintain and provide information, taking into account different norms surrounding relinquishment and illegitimacy. The contours and scope of the right will vary widely among countries. Therefore, prospective adoptive parents deserve as much information as is available, but they also deserve from the agency truthful disclosure prior to selection of the country or disclosure from the agency to the extent there is limited availability of information and the consequences to parenting that child flowing from that lack of information. Adoptive parents, before they enter the process, have a right to know what they can know before they select a country and agencies have a responsibility to disclose truthfully the information they have at their disposal.

2. What medical and social background information should agencies be required to gather and disclose?

There are sometimes impenetrable barriers at sending countries to information. The orphan definition in the Immigration and Nationality Act for purposes of issuing visas really incentivizes the anonymous abandonment of children. For example, it is very difficult for a single parent to relinquish a child in many countries and if we want to facilitate the process, it is best to not have any information at all. All kinds of ethical problems flow from this. Who or which entity is in the best position in the process to obtain, share and interpret information? This implicates question 3.

3. How can ethical practice best be promoted?

In the context of an international adoption, it is the adoption agency that is in the best position to obtain the information required to allow for informed consent. Because of its role in the process, the agency has an affirmative duty to all triad members to ensure that it works continually in the context of the sending country to expand the realm of knowable information, provided that it doesn’t put vulnerable parties at risk in their own countries (for example, single parents) because: (1) the agency is likely to have the best contacts within the sending country, and (2) agencies are organized in lobbies so they are in the best position to leverage the U.S. government which can in turn leverage sending countries to provide more information.

Too often in the international adoption context, agencies fail to satisfy the ethical duty to obtain and expand the amount of knowable information because the relationship between agencies and adoptive parents is by and large controlled by contract, not statute.

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  It has become the norm for contracts in international adoption to include extremely broad exculpatory clauses which in effect absolve the agency of any duty whatsoever to obtain accurate medical, developmental and social information on the children offered for placement. When challenged, courts have routinely upheld the validity of exculpatory clauses.



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  A typical international adoption contract she found provides: “I release and discharge x agency from any and all causes of actions, claims, demands, damages, costs, loss of services and expenses which may arise now or in the future as a result of my attempt to adopt a child. My release includes but is not limited to the potential claims as set forth below: We will not be held responsible for physical or mental problems to which the child may be predisposed or may develop in the future. I release the agency from any actions or charges implemented by the U.S. or foreign country which may result in additional cost, procedures, delays or timeframes. We hold harmless the agency, its employees, agents and board of directors from any situation which may occur in regard to our personal safety within the sending country and from claims which we may have for emotional injury suffered from the adoption process.” The contract lists a number of diseases. “We have acknowledged that we have received all information available to the agency.



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  In a contract based system, rights and responsibilities are determined through negotiation. Prospective adoptive parents have no power whatsoever. What can be done to facilitate access to and sharing more knowable information? Agencies should be required through the contractual and negotiation process to meet certain baselines. Adoptive parents, with some assistance, could negotiate clauses holding agencies responsible for a bare minimum, for example, undertaking due diligence to determine whether a child does in fact satisfy the U.S. orphan definition, vet in country personnel to ensure the child was not procured by improper payments, in countries that permit video and testing, that the agency took all available steps to obtain accurate info and provide prospective adoptive parents with avenues of legal redress instead of signing contracts of adhesion. This is unlikely to happen in the future but it is necessary to allow informed consent.
  
  

Questions:

1. Is there anything that can be done to guard against the falsification of information?

Oreskovic: In the international adoption context, there are many children who are legitimate orphans under the U.S. definition. It requires more effort and time and it is more of a concern not to make the process quick and easy but to make it legal. For example, in Cambodia it was easier to cook up birth certificates because agents were too lazy to obtain the information.
O’Farrell: On the domestic side, this involves the field of social work and accepted practice in how we’ve evolved into the adoption business. For infant adoptions, what information do we need to know and how do we develop a trusting relationship with the expectant parent? If they tell the truth, will the child not be placed with the best prospective adoptive parent they found for that child? Is there a safe environment to talk with the agency or attorney? For older child adoptions, it is negligence on the part of social welfare system that they are not getting more assessments and evaluations for the children. They are not putting together the full story for the children. Ethically, they need to do a better job of getting the real truth and real information so it can be passed on to the adoptive parents.

2. The founder for Friends in Adoption, a domestic placement agency commented that she works on the premise that people coming for services want a healthy baby and healthy family. They are not adversarial, but should work together. She has found that presented that way, people are forthcoming and the integrity of adoptive couple and the pregnant mother is there. If they cannot get information, typically from the biological father, the grandparents can be a wealth of information. So they will go to the extended family to try to get accurate information.

She also feels strongly there is a responsibility that adoptive parents care take the adoption until the child can care take the adoption for himself. Not to have available information around issues of addiction and mental illness is a disservice to the child. So they explain that to the biological family, not to be judgmental, but better prepared for the child to grow up healthy.

As an agency director, she doesn’t have a legal right to determine who can and cannot adopt beyond the criteria set forth in the home study process and procedure. Many times she has felt a family is not the right family to qualify for adoption, but she has been told she cannot disallow an adoption by the family.

Her agency began with a handshake but because society is so eager to sue, she now has a service agreement which requires sign off on every line of expectations.

3. Any advice for how to help state agencies understand the importance of knowing the child’s full history prior to matching?

O’Fallon: Training and supervision for agencies which means resources, schools of social work, and expectations of standards of care. Trauma evaluations are useful. Time of placement is critical for prospective families because once the adoption is finalized, records are closed. Prospective families are perceived as demanding if they ask for information which can jeopardize the placement.

4. David Brodzinsky commented that it’s one thing to share information and it’s another to interpret it. Information has to be provided in a way that’s useful. Most agency personnel and attorneys are not expert enough to provide updated information. Agencies are beginning to recognize they are not sure how to present information in a way that’s useful to prospective adoptive parents. It’s important that we not just focus on the issue of the right of prospective adoptive parents to have information, but that they have information they can use. What does risk really mean? It’s difficult to predict from medical or psychosocial information to long term outcomes.

O’Fallon: This is applicable to attachment issues where kids have difficulty trusting adoptive parents. She doesn’t know if families are presented information around when kids have poor caretaking from age zero to 1, multiple moves and many factors that may affect the ability to trust. Placing agencies and social workers have the responsibility to give the big picture.

With prenatal exposure to drugs and alcohol and attachment, parents have the most difficult time understanding what will happen and how they will have to treat children differently.

5. Dr. Dana Johnson commented that the trend has been towards informing families of complicated medical issues especially for children who have been institutionalized. Adoptions used to be low risk medically because many children were in Korea, from single parents who were in foster care. With adoption opening up to Eastern European countries, it has become much more difficult for parents to understand the effects of malnutrition and early deprivation. Expectations are the key issue.

Regarding absolving agencies, he has been involved with a lot of wrongful adoption suits. Most of the time, the families who are suing had the information in their hands but didn’t go to get it interpreted.

Behavioral and emotional issues often relate to drug and alcohol exposure. A child who cannot communicate or communicate in an adverse way is where families get stressed as opposed to medical conditions like hepatitis or cerebral palsy.

If families are scared out of programs, that is not a bad thing.

6. A person who operates a domestic adoption program asked for feedback on some of her practices. She doesn’t routinely show photos of newborns because they represent all that is hopeful and then the prospective parents don’t listen to the child’s background. She has found that alcohol is far more devastating than any other substance, but because it’s legal, she also finds that many birth parents underreport so she tells prospective adoptive parents that because of the birth parent’s lifestyle, she believes there is far more use.

O’Fallon: Suggests a parent-to-parent model, so prospective parents can meet other parents of kids with FAE issues.

7. A mother commented that she was not hearing ongoing information being mentioned. The flow of medical information is very important as an ongoing resource. If a mother who relinquishes is a young woman, her medical history consists of when she had chicken pox and later, after relinquishing, she could develop heart disease or cancer or illnesses that might be important to know. What is the ethical responsibility of agencies to pass on that information? She knows that they don’t in most cases.

Is there any ethical responsibility for information to be passed the other way? The author of The Same Smile relinquished a child and a subsequent child developed leukemia. She begged that information to be passed on and it wasn’t. Seems to be an ethical responsibility on the part of agencies both ways.

Moderator: From a legal perspective, no law would allow for enforceability of post-adoption info.

Johnson: Should agencies be collecting DNA from birthfather and mother at time of domestic or international adoption and archiving it to the day when we can do an analysis of the genome?

O’Fallon: Open adoptions would eliminate these problems. It’s secrecy and closed records that are creating this situation.

Oreskovic: For pre-adoption medicals, is there any research that demonstrates a different developmental trajectory among internationally adopted children, especially boys who don’t fall into clinical populations? For example, short-term post-institutional issues that may affect relationships with other children, maturity levels, etc.? Johnson replied that the problem is that the research deals with populations, not individuals. There is some data regarding long-term issues for children adopted from institutional settings. Risk factors have to do with deprivation early in life in terms of physical and sexual abuse. There are genes with only one copy in males that will predispose them to more conduct disorders if abused early in life if a certain enzyme is present. Other studies have shown no boy/girl differences except attention issues for males getting into early adolescence issues and having more behavioral issues.

8. A domestic agency worker commented that she knows of no other way to practice ethically than to pass on information from the birth family. If they have a birth parent who has placed more than once and doesn’t place with the same family, she immediately put both families in touch with each other. Her agency started contracting with a cord blood banking business. A lot of families are banking cord blood to help with medical issues later on.

Usha