Thursday, May 26, 2005

Protections for Foster Children Enrolled in Clinical Trials

The following testimony was presented to the House Committee on Ways and Means Subcommittee on Human Resources on Wednesday, May 18, 2005 at a hearing on Protections for Foster Children Enrolled in Clinical Trials.



Alan Fleischman, M.D., Senior Advisor, The New York Academy of Medicine, New York, New York



Roberta Harris, Deputy Secretary, Wisconsin Department of Health and Family Services, Madison, Wisconsin



Marjorie Speers, Ph.D., Executive Director, Association for the Accreditation of Human Research Protection Programs, Inc.



Moira Szilagyi, M.D., Ph.D., Fellow of the American Academy of Pediatrics, on behalf of the American Academy of Pediatrics



Friday, May 20, 2005

Federal Regulation of International Adoption

Introduction

It has been over ten years since the United States signed the Hague Convention on Intercountry Adoption. It has been nearly seven years since the White House transmitted the treaty to the Senate for ratification. It has been four years since the Senate ratified the treaty and President Clinton signed the enabling legislation, the Intercountry Adoption Act (IAA) into law. It has been over three years since the State Department held a series of public meetings to elicit information to inform the process of writing implementing regulations.



International adoption has been a widely accepted practice in the United States for over fifty years. Yet for most of that time, our government has not regulated adoption businesses in any meaningful way. Despite assurances that the IAA would be implemented some time ago, the State Department continues to equivocate about issuing final regulations or what those regulations will do to create greater transparency and accountability. Now, nearly four years after both consumers and industry should have received clear guidelines; the outcome of this process has never seemed more compromised. With the lines drawn between maintaining the status quo and achieving the first meaningful federal regulation and real protections for consumers of international adoption real progress is at risk.



The Regulatory Failure

Fundamentally, the Hague Convention, an international treaty, and the Intercountry Adoption Act, its implementing legislation, were developed to address a range of problems identified in international adoption practice, from concerns about child trafficking to complaints about skyrocketing costs to a rising number of wrongful adoption suits. Nevertheless, over a decade of discussion, debate, Congressional hearings, legislation, meetings and a myriad of detailed comments, four years after the Intercountry Adoption Act was signed into law an impasse remains on how inter-country adoption should be regulated.



No one, it seems - including the “experts” - can agree on how the federal government should appropriately regulate this important, growing but ultimately complicated process. Our national “policy” remains allowing large sums of cash to leave the country in an entirely unregulated system and browbeating foreign governments into surrendering children in a decision making process for their foster children that none of our fifty states would permit for America’s waiting children.



For years, the argument against greater regulation of adoption by the federal government has been rooted in the notion that adoption is a state law issue. While adoption is an important benevolent response to the needs of orphaned children around the world, it is also a big business that generates millions of dollars in revenue. All international adoption is inherently interstate commerce. While the federal government regulates everything from coal mining to organ transplants, international adoption has remained beyond the reach of most federal enforcement or oversight. The State Department’s equivocation has ensured that consumers have more protections when they join a health club than they do when they make this profound and life altering decision.



This country’s failure to adequately regulate international adoption has already had serious consequences. By allowing each state, each agency, indeed, each family to pursue adoption differently the US government has ensured consumers of adoption services have no coherent guidelines to protect their interests. This lack of consistency has only been amplified by the use of the Internet to market adoption services and the growing demand for children. Lacking training in foreign policy or a sound regulatory framework would be adoptive families and their adoption agencies are encouraged to navigate the increasingly complex and treacherous geopolitics of countries around the world with virtually no training and in many cases a vested self-interest. The result has been diplomatic and emotional chaos.



Foreign Adoption at Risk

Predictably, many foreign governments have elected to suspend or ban adoption rather than manage the independent diplomacy of these competing interests. They have also demonstrated increasing resistance to permitting large cash payments to facilitators. According to Ethica: A Voice for Ethical Child Placement in the past fifteen years, 13 countries have suspended or ended their adoption programs. In addition, four additional countries have closed temporarily to investigate charges of corruption or child trafficking. These countries represent 43% of the countries that have provided the majority of children adopted to the US. Though the total numbers of international adoptions have risen slightly the numbers of sending countries has decreased.



Superficially, the adoption industry and the consumers of its services appear to agree that the stated purpose of the Hague Convention on Intercountry Adoption and its implementing legislation in the US served a valuable purpose. By creating uniform standards abuses in adoption could be minimized and the practice itself could grow.



Ironically, attempts to ensure oversight and adequate consumer protections, requiring liability insurance, limiting cash payments and demanding greater transparency for service providers have triggered a firestorm of controversy. Despite the fact that many federal agencies engage in aggressive consumer protection and oversight, the State Department has attempted to balance the interests of service providers large and small with the interests of consumers and the demands of diplomacy. Unfortunately, the proposed regulations demonstrate an inadequate response to abuses that prompted passage of the IAA or how those abuses might be tempered or eliminated and a lack of insight into the economics of international adoption. Conflicts focus on several key areas:



Liability


For many years, adoption agencies working abroad have relied on the services of so called facilitators to identify and procure children for adoption and to navigate the often complex political issues in the sending country. Facilitators often require large cash payments, ostensibly for their services. They also work as independent contractors and have traditionally had little or no exposure to liability when issues related to their service arise. In some instances, facilitators have engaged in illegal activity including money laundering and child abduction. Even then, consumers have had little or no recourse for their actions.



The IAA addresses this problem by requiring that adoption agencies assume responsibility for all of their employees, contractors and facilitators here and abroad. Major adoption trade groups like the Joint Council for International Children’s Services (JCICS) have opposed this provision despite the fact that American companies doing business abroad are routinely expected to take responsibility for and adequately supervise their employees overseas. This loophole has left birth and adoptive families vulnerable to a variety of abuses while their service providers maintain plausible deniability.



Contractual Waivers

The IAA forbids the now common practice by adoption agencies of requiring prospective adoptive to sign waivers of liability on the part of their agency or its agents. Trade groups like the Joint Council hold that professionals in other areas are not expected to meet this standard. However, that assertion is not true. Professionals in occupations involved with the public interest - especially professionals rendering services to clients or patients dependent on them like physicians - are routinely prohibited from seeking exculpatory provisions from their clients. According to the American Adoption Congress, lawyers are specifically prohibited from doing so, for instance in the Model Code of Professional Responsibility Disciplinary Rule 6-102 which states “A lawyer shall not attempt to exonerate himself from or limit his liability to his client for his personal malpractice.” It is hard to imagine a scenario more fraught with emotional dependency that the relationship between an adoption agency and a prospective adoptive family, not to mention a birth family. Thus, there is ample precedent, both legal and ethical, to resolve the issue of waivers in favor of consumers.



Insurance


Perhaps the most controversial provision in the IAA requires adoption agencies to carry professional liability insurance in the amount of $1 million per occurrence. It came as a shock to many policy makers that many adoption agencies operated without insurance. It probably never occurs to many prospective consumers of adoption services to even inquire. According to one JCICS backgrounder, such insurance is “unobtainable.” Even if such coverage were readily available, they allege, it would be prohibitively expensive. This, of course, simply isn’t true either. A number of reputable insurance carriers provide reasonably priced coverage for qualified agencies providing adoption services.



Insurance provisions as required by the new law are reasonable and there are ample precedents in other fields. Insurers will add a layer of consumer protection by helping to enforce the safeguards of professional conduct as they do in other professions. In fact, until the State Department implements consumer protections mandated by Congress the underwriting process might represent the only effective regulation the industry has. Perhaps the question the State Department should be considering is whether or not an agency that cannot be insured should be in business in the first place. It is unlikely that most adoption agency owners would undergo brain surgery by a doctor lacking malpractice insurance.



There have been many experiences where negligence or fraud in an adoption placement has led to severe financial and emotional distress for innocent adoptive families. Even if the cost of insurance premiums was passed on to consumers it would amount to a nominal fee, $300 - 1000 in the context of a costly adoption. This is a fee most prospective adoptive parents would happily assume. It is certainly a cost that could be offset by lowering cash payments to foreign facilitators. Using the ultimate scare tactic to avoid assuming this normal cost of doing business many adoption agencies go on to assert that agencies “will have no choice but to pass this cost onto adoptive families” and that “fewer families will be able to adopt” due to cost. As for that canard, it should be noted that it is impossible to quantify how many qualified; loving families around the world have already been priced out of the adoption market by double-digit fees that the federal government refuses to cap. Since the US effectively limit pricing in other industries, offsetting rising costs with federal subsidies, perhaps it is time to engage in a serious discussion to subsidize adoption costs, either for industry or consumers or both.



Conclusion

Around the world, thousands of children are desperately in need of families. Around the United States there are hundreds of excellent adoption providers seeking to match those children with the thousands of well-qualified families in this country seeking to adopt. The fundamental purpose of the Inter-country Adoption Act was to provide a consistent, clearly articulated business model for inter-country adoption that would limit abuses, protect ethical agencies and consumers and make it easier for everyone to participate in this important component of international child welfare.



Over the years the inaction of the US government and the State Department in particular has penalized good agencies while creating a haven for less good ones. It has ensured that consumers of adoption services will continue to operate without protections afforded to constituents of dozens of other federal agencies and industries. It has created a diplomatic nightmare for foreign governments struggling simultaneously to establish credible child welfare agencies while attempting to accommodate the costly and constant demands of adoption agencies.



Many people with a vested interest in the adoption industry have attempted to persuade policy makers and consumers that any effort to regulate adoption is tantamount to being anti-adoption. However, it is impossible to quantify how many children have been deprived of families because we haven’t. As we fail to take adequate regulatory responsibility for adoption the tens of thousands of children who will continue to languish around the world while the US government remains confused about a task that should be crystal clear.



Guest Commentary by

Maureen Flatley

This is an update of a 1999 article which originally appeared in Decree which is published by the American Adoption Congress



Thursday, May 5, 2005

Foster Care Meets the Third Reich<br><em>reference is borrowed from the New England Journal of Medicine</em>

Over one year ago, the Alliance for Human Research Protection in New York City alerted the federal Food and Drug Administration that they had “reason to believe that federal regulations for the protection of children as research subjects have been seriously violated in federally funded HIV research.”



Kudos also to Liam Scheff who in December 2003 broke the story of the drug trials in an online article entitled “The House That AIDS Built”.



AHRP’s letter to the FDA states that “a series of Phase I and Phase II drug experiments were conducted on infants and children who were under the guardianship of the New York City Agency for Children's Services (ACS), and living at Incarnation Children's Center, a foster care facility under contract with ACS. The test subjects were children diagnosed with HIV infection - in some cases infants who were merely "presumed" to be HIV-infected. Phase I and Phase II experiments involve the greatest level of risk and discomfort for children insofar as they test the safety and toxicity of the drugs as well as maximum dose tolerance.”



In response to these allegations, the New York City Administration for Children’s Services (ACS) recently contracted with the Vera Institute of Justice to conduct an independent review of ACS policy and practice regarding the enrollment of HIV-positive children in foster care in clinical drug trials during the late 1980s and 1990s.



The former-leading-critic-turned-revolving-door-head of ACS, John B. Mattingly, defensively responded in a press release “that the policies in place at the time reflected good practice.” That is, if there ever WERE any policies in place that anyone could then or now locate!



The BBC previously reported on this story in November 2004. Now that the New York Times and Associated Press have finally discovered this unbelievable scandal, trial lawyers, like my firm Marsh and Gaughran LLP, can not and should not be far behind. Along with a General Accounting Office investigation and Capital Hill hearings.



And finally, it remains incredible to me that in the 21st Century in the United States of America—where murders, rapists and pedophiles have a Constitutional entitlement to a court-appointed and taxpayer funded lawyer—children are involuntarily placed into foster care with no right to an attorney. In the vast majority of the states, foster children are lucky to get a well meaning but usually ineffectual community volunteer as an advocate in court.



The hundreds of thousands of voiceless and neglected foster children will remain so until Congress, the states and the bar get serious about providing well funded trained lawyers who zealously assert the child's position. Anything less is a sham.



As for Mattingly, we’re enrolling him and the heads and former heads of child welfare in Illinois, Louisiana, Maryland, New York, North Carolina, Colorado and Texas, in an involuntary clinical trial of civil lawsuits. This time foster children will win! Sieg heil.