Dr. Charles A. Nelson directs the Laboratory of Cognitive Neuroscience. He is also the Richard David Scott Chair in Pediatric Developmental Medicine Research at Harvard Medical School and Director of Research in the Developmental Medicine Center at Children’s Hospital Boston. (see)
The Institute for Child Development
Building Romania’s Child Development Infrastructure
Romania’s admission to the European Union (EU) marks an important turning point for the country. It is a testament to the continuing progress government and civil society are making in aligning the nation’s political, economic, and social structures with the rest of Europe.
To reach this point, Romania needed to address the harrowing conditions in which its abandoned and orphaned children lived. Historical and political forces had created a tragic legacy of institutionalization for these children, with 100,000 languishing in orphanages that provided meager emotional, social, or physical stimulation. Recent social policy changes have introduced a process of mass deinstitutionalization. Sixty-thousand children have now been reunited with their birth families or settled in foster families or group homes. The remaining 40,000 will soon follow.
However, this success has generated a massive and urgent new need: Community placement does not erase the imprint of severe, early deprivation. The effects linger in aggressive behavior, inattention, hyperactivity, and disturbed attachment, among other dramatic developmental problems. While significant progress has been made, Romania does not yet have a child development infrastructure capable of adequately addressing these problems. Establishing one is imperative if formerly institutionalized children are to be successfully integrated into their new families and helped to reach their full potential. Further, services that benefit deinstitutionalized children will help many others as well. The problems that beset these children – attention deficit disorder, anxiety, learning disorders, for example – can emerge for numerous reasons other than institutionalization. By developing a robust child development infrastructure and sound public policy to support it, Romania will benefit all of its special needs children.
Toward an Institute for Child Development
An exciting collaboration has taken shape that can put the structure and resources in place to support the systematic, coordinated, long-term effort required to bring Romania’s child welfare system, as well as its general knowledge of child development and pediatrics, up to current European standards. This collaboration involves the clinical and scientific leaders from the Bucharest Early Intervention Project (BEIP – see) and their Romanian partners, foremost among them SERA Romania, the country’s oldest and most respected nongovernmental organization (NGO) involved with child health and welfare. The BEIP is a longitudinal, prospective study probing the impact of early deprivation on Romania’s institutionalized children and the potential healing effects of placing children in foster families. SERA Romania has served as the BEIP’s Romanian administrative partner and has worked tirelessly to facilitate the project. It has been an essential partner in the BEIP’s efforts.
Since its inception in 2000, the BEIP has become a vital source of information and resources for Romania’s child health and protection communities. As such, it has begun to educate local professionals and establish a unique knowledge base specific to Romania’s formerly institutionalized children. Furthermore, its findings have influenced policy. The BEIP has documented the profound adverse effect of early deprivation on a child’s emotional, behavioral, and cognitive development. It has also demonstrated that high-quality foster care can ameliorate some of the problems. These findings have begun to have major impact on policy reform in Romania, as well as in other countries where institutionalization of young children is still being practiced.
To build on this momentum and leave a legacy from the BEIP that is permanent and focused on long-term improvement, the BEIP’s leadership and its Romanian partners have conceived the Institute of Child Development (IDC), a non-political, science-based national resource serving the needs of Romania’s most vulnerable children. The IDC will coordinate the research, training, clinical services, and dissemination required to create and sustain a modern and effective child welfare system in Romania.
A Model of Excellence
The IDC will be modeled after the Developmental Medicine Center (DMC – see) at Harvard-affiliated Children’s Hospital Boston, where BEIP principal investigator Charles A. Nelson, PhD, is director of research. The DMC is one of the premier facilities dedicated to improving the lives of children with developmental disorders and their families in the United States. It has pioneered a model of integrated and collaborative clinical services, research, and training designed to provide better diagnoses, treatments, and, ultimately, cures.
The IDC will import this integrated model to Romania and will build the local infrastructure and critical mass of local expertise necessary to respond to the changing needs of the nation’s child population in a self-sufficient, effective, and sustainable manner. The IDC itself will become a model of excellence for other nations.
Steps toward establishing the IDC have already been taken. With the help of a $900,000 grant from the John D. and Catherine T. MacArthur Foundation and the support of SERA Romania and other partners, the IDC’s founders have:
§ Secured and begun renovating permanent space at St. Catherine’s Placement Center
§ Defined the IDC’s organizational structure and formally named Dr. Bogdan Simion as director general for a period of two years, 2005-2007
§ Conducted child development seminars the Ministry of Labor has recognized as continuing professional education
§ Received clinical certification from Sector 1 Department of Child Protection, which finished renovating a clinical center, Pavilion 4, on the premises of St. Catherine’s
§ Implemented model research and case management projects
§ Received backing from numerous governmental and professional groups, including Institute of Maternal and Child Health, National Authority for Child Protection and Adoption, Bucharest City Council, Romanian College of Physicians, Romanian Society for Pediatrics, Romanian Academy of Sciences, and local departments of child protection.
The IDC is now seeking the substantial resources it will need to seed all aspects of its vision, as described below. The long-term goal is to be self-sustaining in three years and to demonstrate the impact of the Institute model so that the Romanian government will embrace and absorb the IDC, making it the centerpiece of the nation’s child welfare efforts.
The Institute Concept
The Institute for Child Development will implement a broad set of activities designed to establish a self-sufficient, local capacity to meet the many needs of formerly institutionalized children and others with parallel needs. It will recruit Romanians trained abroad to fill the leadership positions of directors of research, education, and medicine. As shown in the organizational chart on the next page, these individuals will report to the executive director. The director of research and the medical director will manage the research lab and clinical services, respectively.
The IDC’s activities will be administered through three interrelated departments:
Research and Development:The existing knowledge infrastructure on child development in Romania is scarce and must develop rapidly to address the enormous challenges confronting Romania today and to equip the country’s child advocates, policymakers, and clinicians to deal with future needs as they evolve. Only a local knowledge base can inform effective, evidence-based programs, interventions, and policies over the long term. To address this need, the IDC will:
Pilot and translate assessment tools: Because of Romania’s intellectual isolation during the Communist era, relatively few resources are available in the field of developmental psychology. To enable accurate identification of developmental problems, assessment tools already available in the US and elsewhere must be exported to Romania. This involved process will require translating the tools into Romanian, and then piloting to validate reliability in Romanian populations.
Train Romanian investigators: The IDC will build an indigenous capacity for research by training Romanian child development professionals in research methods and developing the next generation of researchers. Fellowships and internships will provide talented young researchers with an opportunity to work side-by-side with the Institute’s professionals, both research and clinical. Fellowship opportunities will also be extended to psychiatrists, psychologists, and other clinical specialists. By providing clinical exposure for researchers and research experience for clinicians, the IDC will launch a new generation of professionals who will better understand how the other thinks. The result will be investigators who are better equipped to translate their findings into treatments, and clinicians who can provide a more integrated and informed level of care.
Conduct a comprehensive needs assessment: Currently, no one knows how many Romanian children have developmental disorders, handicaps, or genetic syndromes such as Down. Getting a fix on this number is critical to planning and developing the IDC’s clinical services – and to building sufficient treatment capacity throughout the country. To determine the magnitude of need, Institute researchers will design a needs assessment study and recruit child health professionals nationwide to help administer it. It will share results with policymakers, contributing to the informed decisions being made about Romania’s child health services.
Foster exchange programs: Three times a year, the Institute will host a visiting professor for several days. Visiting professors will be internationally renowned child development researchers. They will be selected not only because of their status but also because of the relevance of their specific interests to the IDC’s most pressing research needs. The Institute will also seek opportunities for Romanian investigators to work abroad. These exchanges will fully integrate Romanian professionals into the broader research community and provide opportunities for them to learn from and collaborate with a much wider array of experts than would otherwise be possible.
Research seminars, outreach programs, and publications will further expand the Center’s reach. The goal is to develop the critical mass of expertise necessary to achieve and maintain progress in the areas of child health, development, and protection.
Clinical Services and Training: The goal of the IDC’s clinical services is not only to provide evidence-based, scientifically driven care to its patients but also to generate effective interventions that can be replicated in clinics across the country – indeed, throughout the world. Empirical knowledge of the factors that facilitate a child’s development following profound social and emotional depravation remains rare, so few specific, validated treatments exist. The IDC’s integrated clinical and research branches perfectly position it to develop, pilot, and disseminate these sorely needed treatments.
The IDC clinical services will include general pediatrics, child psychiatry, child psychology, physical therapy, speech therapy, audiology, and electrophysiology, among others. A clinic has already been established with funding from the Sector 1 government and SERA Romania. As the clinic is integrated into the IDC structure, it will be organized according to the “hub and spoke” model developed by the Children’s Hospital/Harvard DMC. Patients will be evaluated, and then referred to one of a series of specialty services within the clinic (the “spokes”). The emphasis will be on expert diagnosis, treatment, and family support:
Assessment: A comprehensive assessment will be the first step in every child’s care. The IDC will both adopt existing standardized, effective screening tools and establish new assessments specific to the needs of its population. Systematic assessment will enable Center clinicians to assure that each child receives appropriate services. The Children’s/Harvard DMC has extensive experience training child health professionals in assessment, and members of its team will train IDC staff.
Specialty services: A range of specialty services within the clinic will address the multiple problems, both physical and psychological, deinstitutionalized and other special-needs children face. The clinics will be staffed by multidisciplinary teams consisting of psychiatrists, psychologists, pediatricians, pediatric nurse practitioners, and other specialists as appropriate. These teams will provide not only clinical care but also family support and resource information. The clinics will be defined and established based on the numbers of patients diagnosed with specific disorders — autism or attention deficit disorder, for example. The goal will be to provide each child with the comprehensive, evidence-based services he or she needs to achieve maximum potential. To this end, the IDC will also pioneer new services and treatments that emerge from its research studies. Approaches that prove effective could be exported throughout the country and beyond.
Case management: Empowering families to take the best possible care of their children is among the IDC’s goals. The IDC has already organized a social work team to provide case management services to all former BEIP study subjects, as well as other children known to the team. A social worker from the team regularly visits the families, providing services as needed. These range from help paying heating bills to clinical interventions. Case managers at the clinic will continue this commitment to family empowerment by providing consistent, reliable communication to families before, during, and after their child’s diagnosis. As part of this effort, the team will develop a database of information and referral resources throughout the country. It will provide referrals for families of disabled children to a network of trained and qualified practitioners who have participated in the Institute’s training and continuing education courses.
Intensive training of professionals in areas of specific relevance to vulnerable child populations will be a key component of the clinical work. Training will provide hands-on experience for pediatricians and other practitioners who will work with the IDC’s special population and have the opportunity to collaborate with its researchers on clinical research projects. Such collaboration between research and clinical practice will integrate traditionally disparate domains, leading not only to better services for children already exhibiting problems but also to early intervention strategies that place at-risk children on a healthy developmental path.
Education, Training, and Dissemination: This department will train and educate community-based practitioners, provide information on child development to parents, and disseminate information, including research findings, to key government officials, the media, and the general public. It will also coordinate regular integrative conferences and workshops, nationally and regionally, and oversee translation of textbooks, research articles, and other educational materials for clinicians and academics. A major goal of these outreach efforts is to provide the Romanian child health and welfare community with the sound scientific information necessary to make good policy decisions.
Educating community professionals: The Center’s educational programs will focus on the initial and continuing education of community professionals working in the areas of child health, development, and protection, as well as on specialty training in areas particularly relevant to the post-institutionalized, special-needs, and at-risk child. These professionals need to know what issues families and children will encounter as the children return to the community – and how they can most effectively respond.
Training is also needed to identify at-risk children in need of preventive services. The dearth of quality assessment and evaluation tools available to Romanian practitioners complicates the task of identifying at-risk children, as well as of properly assessing those already showing signs of developmental disorders. Thus, the IDC will make training pediatricians in state-of-the-art evaluation tools, including those piloted by the Institute, a priority. The IDC will provide this training in conjunction with international partners; pediatricians who choose to participate will qualify for referrals of patients from the Institute’s clinical department.
Educating parents: Parents of both children with disabilities and typically developing children will have access to a variety of resources through the IDC. A Romanian-language web-based information portal and a special help hotline, the first of its kind in Romania, will facilitate access. The hotline will provide immediate information to parents on a variety of topics related to disabilities, development, and general health. Educational materials on child development will be available, as will special courses and support groups for biological, adoptive, and foster parents of post-institutionalized children and children with disabilities. Finally, parents of children participating in the Institute’s research or receiving clinical services will receive a special newsletter targeted to their interests and needs.
Dissemination: In an effort to provide basic knowledge about both child development and special populations to the broader public, the Institute will produce press releases on research findings translated for a lay audience, including research on the BEIP population and other international research. Educating government officials is also part of IDC’s mission. To achieve this goal, IDC will provide briefing materials for government child welfare officials. It will monitor upcoming legislation and policy decisions and act as a knowledge broker, providing state-of-the-art knowledge on best practices to encourage healthy child development in Romania.
Perhaps the most significant of the department’s activities will be bi-annual integrative conferences that unite government child protection officials, child protection workers, researchers, and pediatricians and other practitioners. These conferences will provide a regular forum for the diverse agents in child welfare to share information, discuss the latest research findings and their implications, exchange resources and ideas, and form networks of support and collaboration. The conferences will provide all the specialists involved in child welfare with an opportunity to make their needs and concerns known and to receive guidance and perspective from one another. Since many government services have been radically decentralized in reaction to the bureaucratic centralization of the Communist era, this type of regular information exchange will enable the child welfare system to act as an integrated whole, informed by research and by the experience of practitioners. It is a perfect expression of the IDC’s integrated, locally based model for providing a better life for the nation’s most vulnerable children.
Realizing the Vision
The IDC has the potential to fast-forward the transformation of Romania’s child welfare system. Thanks to SERA Romania and others, the dysfunction of the institutional era has given way to a humane approach to housing, rearing, and treating the country’s abandoned and orphaned young. Scientific understanding of this special population – and, by extension, other high-needs children – is growing and an indigenous capacity to develop and implement evidence-based diagnosis, treatment, and follow-up services is emerging and informing policy decisions. But this is only the beginning. With a comprehensive, integrated research, treatment, and training institute in place, Romania will be poised to not only provide the best medical and psychological services to its own special-needs children but also lead the world in establishing models of care for children who have suffered profound early deprivation, whatever the cause.
SERA Romania has consistently sought better lives for Romania’s vulnerable, institutionalized children. As one of the prime forces pushing reform, it has harnessed financial resources, exerted political influence, and forged collaborations with child development professionals to reduce the number of institutionalized children, develop new services, and improve conditions for those still institutionalized. For these reasons, the scientists proposing the IDC view SERA Romania as not just an ideal partner but a necessary partner in establishing the Institute. We invite you to partner with us to secure the financing necessary to launch the IDC and sustain it over the next three years. After three years, we believe the IDC’s track record of success will qualify it to receive “Institution of Public Benefit” status from the government, entitling it to a percentage of the national child health budget and making it self-sustaining.