TESTIMONY of the AMERICAN ACADEMY OF PEDIATRICS before the HOUSE COMMITTEE ON INTERNATIONAL RELATIONS

Jerri Ann Jenista, MD, FAAP

October 20, 1999

Mr. Chairman, Members of the Committee, thank you for the opportunity to testify today on legislation to implement the Hague Convention on Intercountry Adoption, an issue of extreme importance to many thousands of orphaned children and the families who want to raise them.

My name is Jerri Ann Jenista, and I testify today on behalf of the American Academy of Pediatrics, an organization of 55,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. I am a member of the Academy’s Committee on Early Childhood, Adoption and Dependent Care, on which I function as the primary expert on adoption issues, particularly intercountry adoptions.

My professional background is in general pediatric academic medicine and pediatric infectious diseases and emergency medicine. But most of my professional life is spent practicing what has come to be known as "adoption medicine." This field involves providing consultation to prospective adoptive parents, adoption agencies, and child welfare and health care professionals about the medical status of children available for adoption. In addition, we treat adopted children who have special needs related to their backgrounds, for example, infectious diseases acquired in other countries. We also manage the rehabilitation of children suffering developmental, nutritional, emotional or neurological problems related to deprivation or trauma suffered in the early months or years of their lives.

I, myself, have been involved in intercountry adoption since 1982, performing research, providing education to parents and professionals and directly caring for patients. In the past three years alone, I have provided pre-adoption medical review on more than 6,000 cases and ongoing consultative medical care for approximately 300 to 500 new patients each year. I have also traveled extensively, personally witnessing the circumstances of the children being considered for intercountry adoption.

I should also mention that I am the single mother of five children adopted from India, three of whom have significant medical or developmental problems related to the circumstances of their former lives.

There were 16,000 intercountry adoptions last year, and nearly 100,000 over the last decade. Therefore, pediatricians are increasingly drawn into the arena of medical evaluation and the long term care of internationally adopted children. Recent research on early brain development has confirmed that consistent, high-quality caregiving is crucial in the early years of life. Therefore, we know that institutional life and foster care, in the US or abroad, are undesirable options for the permanent placement of children. We also know that when a child cannot remain with his or her birth parents or relatives, and cannot be adopted in-country, international adoption offers a positive solution, both for the child and for prospective adoptive parents.

We have serious concerns, however, about the numbers of children being adopted from overseas who have significant medical and behavioral problems that are poorly understood before arrival in this country. When these children are placed in families who are not prepared emotionally, financially or physically to care for them, the outcome can be devastating for both the child and family. It is our hope that improvements in our current system of placing internationally adopted children will result in a better understanding of the medical and social issues facing adoptees, better preparation of the parents who are building their families through international adoption, and improved long-term mental and physical health for these special children and their families.

We applaud you for your efforts to address these issues, and look forward to the day when the Hague Convention and its implementing legislation and regulations are in place.

Major Concerns Regarding Intercountry Adoption

The Academy’s most significant concerns about intercountry adoption are as follows:

* inadequate and/or unavailable information released to families about the health and well being of children being considered for adoption;

* inadequate education and preparation of families to care for children with potential medical or behavioral issues;

* that agencies and adoption facilitators are providing inadequate services and support for adopted children and their families, especially children with special medical, developmental or behavioral needs;

* lack of data on the outcomes of intercountry adoptions.

To understand these issues, some background information about today’s intercountry adoptees is helpful.

Background information on children born abroad who are adopted by U.S. families

Over the past 10 years, there has been a dramatic shift in the demographics of international adoption to the United States. In 1989, there were nearly 8,000 adoptions with over half of the children coming from excellent foster care situations in Korea and Latin America. In 1998, the number of adoptions doubled to nearly 16,000 with only 20% of children coming from foster care. Over 80% of today’s children come from orphanages of variable quality in China or countries formerly under Soviet control.

Fifteen years ago, the typical adopted child was from Korea. The infant was voluntarily relinquished at birth by a young birthmother who would face social castigation if she raised a child born out of wedlock. Because of Korean social mores, the infant was unlikely to have been exposed in utero to alcohol or drugs, and the birthmother likely received some prenatal care. The child was placed almost immediately after birth into foster care with a Korean family who was carefully trained and long-experienced in foster parenting. The child received medical evaluation and treatment in a Westernized health care system. The adopting US family received some information about the birth parents’ medical and social history, as well as detailed and accurate medical reports on the child’s condition. Arrival and adoption in the United States usually took place before the infant was a year of age, facilitating parent-child bonding and attachment.

After arrival in the adoptive home, most Korean children did remarkably well, exhibiting only a few problems specific to intercountry adoption: a somewhat increased risk of chronic hepatitis B infection and minor developmental delays due to a different philosophy of parenting in the Korean culture.

Today, the typical child comes from one of two regions.

The first child is a girl from China. She is almost invariably relinquished by her birth family because of the "one child policy," an attempt to control population growth which penalizes families financially if they have more than one child. Since it is illegal to give a child up for adoption, many female Chinese infants are abandoned in public places or on the steps of an orphanage. This method of relinquishing a child means that there is no medical or social information about the birth family, pregnancy, birth process or medical issues after birth.

The child will wait for adoption in an institutional setting -- an orphanage -- that is of variable quality in terms of physical facilities, nutritional support and caregiver-to-child ratio. The medical care she receives will be scant and from a medical system with different beliefs and limited resources. Her adoptive family will receive little or no useful information about her health, and much of the written documentation will be unreliable or inadequate to evaluate her medical or developmental state. She will most often arrive in the United States as a toddler, so her adjustment and bonding process will be much different, and generally more difficult, than that of an infant.

After arrival, the Chinese girl and her adoptive family face the immediate issues of malnutrition; growth retardation; nutritional deficiencies, including rickets, anemia, lead poisoning and hypothyroidism; inadequate immunizations; and a markedly increased risk of many infectious diseases, including hepatitis A, B and C, intestinal parasites and tuberculosis. For many girls there are long-term challenges including undiagnosed congenital defects and medical conditions such as cerebral palsy, significant global developmental delays, especially in speech and language, and behavioral problems such as poor social skills, attachment disorders and school failure.

Today’s second child is from one of the nations formerly under Soviet control, such as Russia, Ukraine, Kazakhstan or Romania. The economic crisis in Eastern Europe has dramatically increased the number of orphans and has also increased the number of children who are at high risk for medical and behavioral problems. An orphan from one of these countries is often relinquished by the birth family because of economic hardship or family strife. More than 25% of children offered for adoption are available because of an involuntary termination of parental rights following significant abuse or neglect in the birth family.

The rates of prematurity and low birth weight, prenatal exposure to drugs, alcohol and tobacco, and to sexually transmitted diseases such as HIV infection, hepatitis B and C, and syphilis, are at unprecedented high levels. The incidence of previous physical or sexual abuse, physical and mental disabilities, chronic medical conditions and adverse social circumstances are virtually the same in Russia as in children entering into foster care in California.

All of the children awaiting adoption will live in a regimented orphanage setting, with inadequate stimulation and nutrition to grow and develop normally. For some children, medical care is poor or non-existent. For others, medical care is extensive but is practiced on a model almost unintelligible to Western practitioners, depending very heavily on neurologic diagnoses and widespread use of unusual and potentially dangerous drugs. The scanty medical information received by the potential adoptive family will contain very strange medical terminology. Diagnoses, lab tests and immunizations may be difficult to interpret, inaccurate or falsified. This child probably will not "come home" to adoptive parents until he is a toddler or older child. About 10% of the children will arrive into their new adoptive families accompanied by a biologic sibling or another unrelated child being adopted at the same time. The high risk medical and social background, prolonged institutional living, and added stress of competing with another adopted child, set up a situation fraught with risk for difficult transitions and tenuous emotional attachments to the new parents.

After adoption, this second child and his family face all the issues of the Chinese child and more. All outcome studies of children adopted from Eastern Europe and the former Soviet Union have demonstrated high rates of nutritional and growth disorders, infectious diseases including tuberculosis, undiagnosed medical conditions and universal global developmental delay. All studies indicate that these previously institutionalized children have long-term developmental, cognitive and behavioral issues that persist well into the school years and perhaps beyond. The degree of impairment is clearly related to length of institutionalization; the longer the child lives in an orphanage, the worse off he is.

In my own research, about ten percent of the children from orphanages referred to families for potential intercountry adoption should be considered at "high-risk," that is, the child has an irreparable and severe medical, developmental or emotional condition. Another 40% of children have sufficient information noted on their records to determine that they have a "moderate risk" of a long-term developmental, medical or behavioral problem. In summary, all children adopted from institutional settings, that is most of the children being adopted to the US today, should be considered to have special needs.

Concern about the adequacy and availability of information released to families about the health and well being of children being considered for adoption.

All too often, pediatricians encounter families who did not appreciate that their adopted (or prospective adoptive) children had significant medical, psychological, and/or developmental problems. Reassured by "happy family" stories in the agency literature or on the Internet, the parents thought they were adopting a child who was basically healthy, needing only some tender loving care and attention to become perfectly "normal." Instead, they have committed to raising a child with significant developmental delays or disabilities, psychological damage from abuse or neglect, and/or very challenging behavior problems.

While biological children can present the same surprises and challenges, most parents understand that having their own child involves these risks. Parents who adopt a child from another country often believe that they are avoiding such risks because they are choosing the child they will adopt. In fact, some adoptive parents seek a child from another country because they do not wish to adopt a child from the US foster care system who is likely to have a background of abuse, neglect or serious health problems.

When information about an adopted child is insufficient, misleading or inaccurate, the family is surprised, possibly disappointed, and usually ill-equipped to handle the child’s problems. This situation can lead to significant strains in the family (including adverse effects on the child’s adoptive siblings), abuse or neglect of the adopted child (resulting in involvement of the child welfare system), disruption of a pending adoption, or even dissolution of a finalized adoption.

This gap between expectations and reality is reflected in the significant increase in the number of wrongful adoption suits against agencies and facilitators of international adoption. The basis of these suits uniformly has been undisclosed or "should-have-been-foreseen" medical or behavioral problems.

We have a long experience in the United States with the adoption of children with special needs. All of this experience indicates that, the better prepared the family is for a child’s specific needs, the more successful even the most difficult of placements. If we know what works in placing our own "high-risk" children, then why would we provide anything less for children who will become citizens of our country?

In part, the dearth of accurate information about a child’s condition is due to the poor quantity and quality of records kept in the country of origin. Agencies and other adoption facilitators are obviously subject to the goodwill and cooperation of the countries involved. At times, crucial medical or social information simply does not exist, as in the case of the Chinese infant described above.

In other cases, however, the information is not provided to prospective families because some agencies and adoption facilitators make no effort to pursue available medical, social and developmental information on a child. The reports supplied by these agencies are completely inadequate to determine the condition of the child. Currently, approximately 40% of the records submitted to my office fall in the category of "unable to assess because of inadequate information."

In addition, some agencies and facilitators request or require families to sign waivers that absolve the agency of the responsibility to collect pertinent data on the medical and social history of the child being considered for adoption. Agencies and facilitators may pressure families to make decisions about a referral on a child from overseas on very short notice, before they are able to garner adequate information or obtain medical consultation regarding specific conditions. Indeed, some agencies and facilitators do not require, or may even actively discourage, outside medical consultation for families. We consider these practices unethical and damaging to families and children.

Concern about the education and preparation of families about potential medical or behavioral issues.

It is clear from the few studies done in this country that there are significant medical and behavioral problems unique or far more common in internationally adopted children than in those adopted domestically. For example, we know that these children, especially from Eastern Europe and Asia, have a host of identifiable medical conditions, such as rickets, congenital syphilis, fetal alcohol syndrome and inherited blood disorders. We know that orphanage life results in significant developmental delay and growth failure. We know from the best long-term study of Romanian orphans that one-third of the children have mild behavioral issues five years after placement and one-third have moderate to severe behavioral difficulties. That study also outlined clearly other risk factors for poor outcome: adoption of an older child, institutionalization for longer than two years, and adoption of more than one child at the same time.

Given the significant likelihood that a child adopted from another country will have some physical, developmental and/or emotional problems, it is extremely important that potential parents understand the need to obtain whatever information exists on their prospective child. They should also understand the limitations of the information and the fact that it might not be accurate. When there is no child-specific information, they should understand the social and medical circumstances in the country where their potential child resides. Finally, they should understand exactly what it would mean to their family if they adopt a child with medical or psychological problems.

Currently, however, many prospective parents receive insufficient information about the specific child they are considering or about the general risks associated with adopting any child from abroad. In many circumstances, the agency, facilitator or lawyer placing the child provides no education at all to the prospective family, leaving that responsibility to the agency or social worker that performed the "home study." The home study agency or social worker may have no personal or professional experience with intercountry adoption and presumes that the agency actually referring the child will take on this duty. In the end, it is only the child and the parent who suffer.

The insufficient education of families may be due in part to a change in the types of agencies involved in international adoption. There has been a change in agency composition from philanthropic or missionary institutions to an increasing number of private or for-profit companies and individual entrepreneurs. In the early 1980s, the International Concerns Committee for Children listed 46 agencies involved in international adoption; in 1999, there are 176.

In addition, there seems to have been a change in the expectations of families involved in international adoptions. Many are seeking a child from abroad because of infertility problems. After suffering the stresses and disappointments of this condition, and especially of failed treatment attempts, these couples may have especially high hopes for a very healthy, happy child. The extraordinarily high cost of intercountry adoption, often over $20,000, also instills in prospective parents a high expectation for the health of the child.

In short, the combination of aggressive, entrepreneurial agencies, the family image of the "perfect child," and the inadequacy of medical records available from the major countries of origin, creates a dangerous set up for disappointment, dissatisfaction and frustration with an adoption.

Concern that agencies and adoption facilitators are not providing adequate services and support for adopted children and their families before and after the child arrives in the U.S.

Once a family decides to go forward with an adoption, they will need education and services to help them integrate the child into their family, and to anticipate medical or psychosocial difficulties that may arise.

Although we clearly need more data on intercountry adoptions (as discussed below) we do have a wealth of information from adoption and foster care experience in the United States. While there are some differences between international and domestic orphans, there are more similarities in terms of circumstances of abandonment and risks to health and well being. The US information clearly shows us that pre- and post-adoption support services are essential to the success of adoption, especially of children with special needs.

Yet, at present, intercountry adoption agencies and facilitators have no responsibility to provide support for, or even to keep track of the children that they place in adoptive homes. This divorce of adoption process and outcome means that agencies do not feel accountable for placements, and many families whose children are diagnosed with special needs do not receive adequate guidance on how to manage or treat their children. Failure to provide pre- and post-adoption services in these cases increases the chances of a poor outcome.

Tragedies for both children and parents may develop when families are unprepared to deal with challenging children. Extreme examples include the death of a toddler at the hands of an adoptive mother in Colorado, and the removal by child protective services of two children allegedly abused by adoptive parents trying to control the children’s behavior on a flight home from Eastern Europe. Had these families understood that their children might have significant behavior problems, they might have chosen not to adopt them. If they went forward with the adoptions anyway, these sad outcomes might have been averted with pre-adoption training and post-adoption support services.

Pre- and post-adoption services are required for domestic adoptions. There are ample reasons to require such services for intercountry adoptions as well.

Concerns about inadequate data on outcomes of intercountry adoptions.

An important step in ensuring adequate services for internationally adopted children is to improve our understanding of the nature of the medical, developmental and behavioral issues that these children and families face, both on arrival and in the long term. As discussed above, many adoption agencies do not monitor the outcomes of their placements, so it is difficult to assess the determinants of success or failure.

To respect the privacy of adoptive families, data collection on outcomes would have to be voluntary, or derived from public sources, such as immigration records. We urge that further efforts be made to collect longitudinal data that will help improve the adjustment process and ultimate outcomes for children adopted from other countries.

Summary and Recommendations

We know that children being adopted internationally, particularly from China and the former Soviet-controlled countries may have significant medical, developmental and behavioral problems. The incidence and extent of these problems needs further study. As medical professionals and child advocates we clearly see a need for constructive change in how international adoptions take place. Agencies and other facilitators of international adoption need to improve the methods they use to gather information on children being considered for adoption. They need to improve the preparation and education of families prior to adoption. They need to establish accountability for providing support after placement.

The Academy recommends that:

* Facilitation of intercountry adoption should be permitted only by fully qualified adoption agencies with a sufficient professional staff to meet practical and ethical standards of conduct. If any other individuals or entities are permitted to facilitate adoptions, they should ALL be required to meet such standards.

* The Secretary should develop specific guidelines for information sought and obtained from orphanages regarding individual children being considered for adoption. Adoption agencies and facilitators should be required to make every effort to obtain existing information and make it available to families. If the information is not available, an explanation should be required.

* Agencies and adoption facilitators should not be allowed to require families to sign waivers absolving them of the responsibility for collecting medical data.

* Agencies and adoption facilitators should be required to provide education to families about common or potential problems seen in international adoptees. This education should include information about medical, social and developmental concerns and should be provided in depth and over time, pursuant to guidelines established by regulation.

* Agencies and adoption facilitators should be required to provide families with adequate time after receiving information about a child to obtain medical consultation. When a child is at high risk of special needs, the prospective parents should be given the opportunity to ask for further information.

* Agencies and adoption facilitators should be required to give families sufficient time to reflect on information before making a decision on an individual child, taking into account the age and circumstances of the child. This decision-making time should be shorter for an infant and longer for an older child, since the history of older children is more complex and the additional waiting time is relatively less important to an older child than to an infant.

* Agencies and adoption facilitators should be required to provide post-adoption services to families and make efforts to determine the well-being of the adopted child.

* Prolonged waits in temporary foster care or institutions are not good for children, especially in the early years when brain development is most active and sensitive to the environment. Barriers that delay intercountry adoption both into and out of the United States should be removed.

* A method of data collection about the numbers and progress of international adoptees is essential to the provision of adequate care for these children and should be established.

* Access to affordable health care should be available to adopted children upon arrival in the US. Currently, only ERISA-covered plans must cover adopted children automatically; others often are denied insurance for failure to meet unrealistic notification requirements or are denied coverage for pre-existing conditions.

While we have several serious concerns about the current process of conducting intercountry adoptions, it is important to re-emphasize that we strongly believe that such adoptions are a positive and desirable solution for placement of orphaned or abandoned children. The vast majority of intercountry adoptions have been tremendously successful, building happy "forever families." Our goal is to continue to advocate for these children by trying to ensure that the adoption process is ethical and reasonable and, ultimately, an optimal experience for children and families.

Specific comments on H.R. 2909 are attached.

COMMENTS ON PROVISIONS OF H.R. 2909

(American Academy of Pediatrics)

Section 102(c)

We are concerned about how the Secretary of State is going to obtain the data to monitor individual Convention adoption cases involving United States citizens. A case is not specifically defined. However, if a case is considered to be any child considered for adoption (that is, a "referral"), the sheer volume of referrals for adoption into this country would make such monitoring cumbersome and expensive.

Section 104(b)(3)

We suggest adding the words "or dissolved" after "disrupted." "Disrupted" adoptions are those in which a pending adoption is not finalized. "Dissolved" adoptions are those that were finalized, but parental rights were later terminated at the parents’ request. Since most intercountry adoptions are final in the country of adoption, most "failures" are dissolutions rather than disruptions.

With respect to both disruptions and dissolutions, however, it would be difficult to systematically collect this information, as no mechanisms are in place to do so. Although we agree that such information would be very helpful in improving the intercountry adoption process and outcomes for children and families, it difficult to imagine how the data could be gathered without violating family privacy.

Section 104(b)(6)

We recommend that the nonspecific term "adoption fees" be defined so that it encompasses all costs, such as required "donations" to the orphanage and other payments that agencies may not label as a "fee."

Section 104(b)(7)

Again, we are concerned about how the data on the number of Convention adoptions that were vacated for cause will be determined.

Section 204(b)(1)(C)(iii)

We recommend that the bill (or Secretary by regulation) provide how "sensitive individual information" will be safeguarded and how this will be enforced in states with particular laws regarding such information.

Section 204(b)(2)

This section provides for "approval" of for-profit entities to facilitate intercountry adoptions if they meet the standards required for adoption agencies to become "accredited." We agree that individual facilitators and private attorneys should be held to the same standards as agencies, since we believe those standards are necessary to facilitate an adoption in the optimal manner (such as providing the necessary screening, education, counseling, and support services to families). If "persons" must meet the standards of accredited and licensed agencies in order to be "approved," then we recommend that they also be considered licensed and accredited "agencies."

Section 401(b)(1)

We object to the idea that identifying information availability varies by the state of residence of the adoptive parents. This might encourage families to move from one state to another in order to change availability of information for their adopted child. The Convention defines confidentiality of information by the laws of the sending Convention country. This seems to be a more sensible rule.

Sources

1. Albers LA, Johnson DE, Hostetter MK, Iverson S, Miller LC Health of children adopted from the former Soviet Union and Eastern Europe. Comparison of preadoptive medical records. JAMA 1997 Sep 17; 278 (11):922-4.

2. Ames Elinor. The development of Romanian orphanage children adopted to Canada: Final Report. Simon Fraser University, 1996.

3. Mitchell M, Jenista JA Health care of the internationally adopted child part 1. J Pediatr Health Care 1997 Mar-Apr; 11 (2):51-60.

4. Jenista JA, Pre-adoption medical record review. Presentation to the Joint Council on International Children’s Services, April 14, 1999.

5. Hostetter MK, Iverson S, Thomas W, McKenzie D, Dole K, Johnson DE Medical evaluation of internationally adopted children. N Engl J Med 1991 Aug 15;325 (7):479-85.

6. Johnson DE, Miller LC, Iverson S, Thomas W, Franchino B, Dole K, Kiernan MT, Georgieff MK, Hostetter MK. The health of children adopted from Romania JAMA 1992 Dec 23-30; 268 (24):3446-51.

7. Miller LC, Kiernan MT, Mathers MI, Klein-Gitelman M. Developmental and nutritional status of internationally adopted children. Arch Pediatr Adolesc Med1995 Jan;149(1):40-4.