EI Talk: A Blog for Early
Childhood Professionals


Zika and Microcephaly: Implications for Early Intervention Services in Brazil

Early Childhood Interventions February 16, 2016

Since the Zika virus outbreak in Brazil began in May 2015, the prevalence of suspected microcephaly has increased from a historical .5 cases/10,000 live births to an estimated prevalence of 9.97 cases/10,000 live births, representing a twenty-fold increase in cases of microcephaly (Schuler-Faccini et al., 2015; Ventura, Maia, Bravo-Filho, Gois, Belfort, 2016).

Children with microcephaly are at high risk for developmental delays and disabilities. This is a two-part blog post, in which we will discuss the virus, its consequences, and the service needs of children with microcephaly. In Part 1, we will outline the current situation in Brazil, and discuss the virus, microcephaly, and the developmental characteristics of children with microcephaly. Part 2 will focus on the early intervention needs of children with microcephaly and describe the response to these needs by the government of Brazil and the international community. 

Zika Virus

Zika virus was first identified in Uganda in 1947, but the first major recorded outbreak of the disease was in the Federated States of Micronesia. Later outbreaks were recorded in Southeast Asia and the Western pacific, but the 2015 outbreak in Brazil is the first known outbreak in the Americas. It was estimated that there were between 440,000 and 1,300,000 cases of Zika in Brazil in 2015 (Hennessey, 2016).

The virus is characterized by fever, a rash, and conjunctivitis, although many people who are infected remain asymptomatic. Hospitalization is rarely required, and symptoms are usually mild, remaining for several days to a week (CDC, 2016).

The possible association between Zika virus and microcephaly is one of the most severe potential consequences of the virus, and the increase in microcephaly in Zika-affected areas led Brazil’s Ministry of Health (MoH) to declare a state of national emergency (Oliviera Melo et al., 2016). 

Microcephaly

Microcephaly is most commonly a result of abnormal brain development in utero or in early infancy. While causation of microcephaly in infants can not always be determined, some common causes of microcephaly are chromosomal syndromes, neurometabolic syndromes, pregnant mother’s exposure to alcohol, certain drugs, or toxic chemicals, and diseases during pregnancy such as rubella, toxoplasmosis, and cytomegalovirus (CDC, 2016).

Microcephaly is usually diagnosed by a measurement of infant head circumference. The cutoff for diagnosis is usually a measurement of head circumference that is 2 or more standard deviations below the mean for sex and gestational age at birth (Schuler-Faccini et al., 2015). Diagnosis is often followed with a CT or MRI scan to determine the structure of the infant’s brain, and evaluate any possible health risks associated with its abnormal development (CDC, 2016).

Children with microcephaly are at risk for health consequences ranging from mild to life threatening. Seizures, developmental delays, intellectual disabilities, movement and balance, vision, and hearing problems are all linked with microcephaly. Children with microcephaly often benefit from early intervention services such as speech, occupational, and physical therapies in order to maximize their abilities (CDC, 2016). Medications for seizures and neuromuscular symptoms are sometimes advised for children with microcephaly, and genetic counseling is used to help families determine the risk of microcephaly for subsequent children (NINDS, 2015). 

Zika and Microcephaly in Brazil

Although the role of Zika virus in causing microcephaly has not been determined, recent research indicates a correlation. Vertical transmission of Zika from mother to child in utero was suggested when it was determined that the amniotic fluid samples of two pregnant women were positive for Zika RNA while the mothers’ urine and serum samples were negative for the virus (European Centre for Disease, 2015). A Brazilian MoH taskforce investigation found that all mothers in their study sample (n=35) had either lived in or visited Zika affected areas during pregnancy, and 74% reported a febrile rash during pregnancy. Further studies, however, are needed to determine causal association between Zika virus infection and microcephaly in infants (Schuler-Faccini et al., 2016).

Historical tracking and diagnosis of microcephaly in Brazil has created limitations for determining a causal relationship. The historical birth prevalence of microcephaly is lower in Brazil than expected (0.5 cases/10,000 live births as opposed to 1-2 cases/10,000 live births), implying a generally low diagnosis rate for microcephaly. This historical under-discovery could have increased case reporting for microcephaly, over-representing the increase in microcephaly during the Zika outbreak. Reported histories of nonspecific rash illness during pregnancy for mothers of children with microcephaly is also subject to recall bias and cannot confirm a definitive association between the virus and outcome (Schuler-Faccini et al., 2016).

The sharp increase in microcephaly during the Zika outbreak falls outside the range for simple diagnosis errors, however, and a rapid risk assessment determined that a causal association between microcephaly in newborns and Zika virus infection during pregnancy is plausible (European Centre for Disease, 2015). The World Health Organization (WHO) also issued an epidemiological alert about the association of Zika virus and congenital malformations or neurological syndromes (WHO PAHO, 2015). 

Developmental Needs for Children with Microcephaly and their Families

Regardless of the possible association with Zika virus, such a large increase in the prevalence of microcephaly has implications for early developmental intervention  resources in Brazil.

While some children with microcephaly have mild developmental delays, most children are at high risk for displaying severe developmental delays. Common characteristics of children with microcephaly include delayed speech, neuromotor dysfunction, balance difficulties, and seizures. Early intervention services to promote the child’s development and support the family is required as well as medical treatment for seizure control (Microcephaly, 2014). Specialized services such as physical therapy and child neurology may be available in some of the bigger cities within Brazil, but families from more rural areas of the country often have to travel 10 to 12 hours to reach specialized facilities. Additionally, existing facilities will soon face a quickly rising patient population that they may not be prepared to serve (Sifferlin, 2016).

The recent Zika virus outbreak in Brazil with its association to infants born with microcephaly and concomitant developmental issues leads us to ask if Brazil and the global community are prepared to provide the services needed by the child now and in the future. This increase in children with developmental needs will affect the already overburdened social, educational, and health care systems in Brazil.

In Part 2 we will address the early intervention and development needs of children with microcephaly and examine the capacity of the Brazilian government to handle these emerging development needs. 

References

  • Centers for Disease Control. (2016, February 5). Zika Virus. Retrieved from Centers for Disease Control and Prevention website: http://www.cdc.gov/zika/index.html
  • Centers for Disease Control (2016). Facts about Microcephaly [Fact sheet]. Retrieved    from Centers for Disease Control and Prevention website:             http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html
  • European Centre for Disease Control and Prevention. (2015, December). Zika virus epidemic in the Americas: potential association with microcephaly and Guillain- Barre syndrome. Stockholm.
  • Hennessey, M. (2016). Zika virus spreads to new areas—region of the Americas, May 2015–January 2016. MMWR. Morbidity and Mortality Weekly Report65.
  • Microcephaly. (2014, June 26). Retrieved from Raising Children Network             website:http://raisingchildren.net.au/articles/microcephaly.html
  • National Institute of Neurological Disorders and Stroke (2015). Microcephaly Information. Retrieved from National Institute of Neurological Disorders and Stroke. website:             http://www.ninds.nih.gov/disorders/microcephaly/microcephaly.htm
  • Oliveira Melo, A. S., Malinger, G., Ximenes, R., Szejnfeld, P. O., Alves Sampaio, S., &   Bispo de Filippis, A. M. (2016). Zika virus intrauterine infection causes fetal brain      abnormality and microcephaly: tip of the       iceberg?. Ultrasound in Obstetrics &        Gynecology47(1), 6-7.
  • Schuler-Faccini, L., Ribiero E.M., Feitosa I.M., Horovitz, D.G., Cavalcanti, D.P.,    Pessoa, A., …Sanseverino, M.T. (2016). Possible Association Between Zika       Virus Infection and Microcephaly—Brazil, 2015. MMWR. Morbidity and Mortality             Weekly Report65.
  • Sifferlin, A. (2016, February 1). See Inside a Rehab Center for Babies with Likely Zika-Related Birth Defects. Time. Retrieved from      http://time.com/4202473/microcephaly-birth-defect-zika/
  • Ventura, C. V., Maia, M., Bravo-Filho, V., Góis, A. L., & Belfort, R. (2016). Zika     virus    in Brazil and macular atrophy in a child with microcephaly. The Lancet, 387(10015), 228.
  • WHO PAHO. (2015, December). Neurological syndrome, congenital malformations, and Zika virus infection. Implications for public health in the Americas

Eleanor Birch and Jamie King (Georgetown University ’17)

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Implementing Early Intervention for Children who are Homeless

Early Childhood Interventions January 14, 2016

Currently, 2.5 million children are homeless in America. In 2013 the census reported that 6,506 children were homeless in the District of Columbia. This means 6,506 children may have experienced severe hunger, sexual abuse, health problems, and lost educational opportunities due to homelessness.

Our nation will not progress if we allow some of the nation’s youngest citizen’s health and education to decline because they do not have safe and permanent housing. Although there are deep structural problems that contribute to a child living in shelters, cars, abandoned hospitals, foster care, or motels, children cannot wait until the structural problems that contribute to poverty are eliminated. There are programs available that, if implemented optimally, could help diminish the ill effects of homelessness. Early intervention through the Part C program and home visiting through the MIECHV program are examples of program that could be helpful. Both these programs are implemented in what is known as the natural environment, usually homes. However, how can we bring early intervention programs into the natural environment for homeless children when they do not have a stable environment? What can we do to help stop negative outcomes? How can we reinforce the federal laws in place that are meant to cater to needs of homeless children but have failed in raising the children’s academic success? How can we provide high quality early intervention programs to prevent future homeless little girls and boys from disappearing like Relisha Rudd?

Currently there are federal laws in place in order to help meet the needs of homeless children. Title I offers funding for community-based childcare programs, pre-kindergarten, and Head Start (McCoy-Roth 2012). Part C of the Individualized Disabilities Education Act (IDEA) prioritizes homeless children’s need of special services (McCoy-Roth 2012). Both IDEA and McKinney-Vento Homelessness Act makes sure that children who are homeless are immediately enrolled in school even if they do not have the necessary documents. Despite these policies homeless children are not succeeding in school. It is evident that simply providing the services and funding is not enough.

Studies have found that 5.4% of homeless children who enter preschool have a developmental delay in language, social skills, gross motor, or fine motor (McCoy-Roth 2012). Children in kindergarten and 1st-grade who live in homeless shelters performed poorly academically and portrayed egregious internalized and externalized behaviors (McCoy-Roth 2012). Students who are homeless score significantly lower in reading and math than students who live in poverty but have permanent housing from 2 through the 5th grade (McCoy-Roth 2012). These data indicate that although homeless children may be exposed to similar intervention programs as other impoverished children their outcomes are not the same. Programs like EI must target the specific needs of homeless children. Homeless children and families present with unique needs and challenges above those families that live in poverty and programs and providers must individualize to the family needs to increase the likelihood that the program will be successful In order to combat the negative outcomes homeless children experience even with the provision of services. Homeless children need more care and attention. Services that are geared specifically toward dealing homeless children must be provided.

Children who are homeless are at risk for developmental delays and learning challenges that may lead to chronic academic failures. Not only are kids experiencing homelessness prone to being disabled, but they are more susceptible to experience violence, neglect, abuse, poor nutrition, etc. Early intervention providers need to feel comfortable, confident, and competent to assess the home situation more exhaustively than if the child lived in a stable home. EI providers need to find a way to stabilize the children’s learning environment or use every moment and every place as a learning experience. 

References: 

National Center for Homeless Education (NCHE). (2007). Supporting Homeless Students

with Disabilities: Implementing IDEA. National Center for Homeless Education.retrieved from http://center.serve.org/nche/downloads/briefs/idea_qa.pdf 

McCoy-Roth Mackintosh, & Bonnie Marci, & Murphey, David. (2012 February). When

the Bough Breaks: The Effects of Homelessness on Young Children. Child Trends. Retrieved from http://www.childtrends.org/our-research/poverty/ 

Kimberly Portes (Georgetown University’17)

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Fractured, Not Broken: How to Repair the Foster Care System to Better Serve Children with Disabilities

Early Childhood Interventions December 11, 2015

The purpose of foster care is “to provide a safe temporary placement for children who cannot remain safely in the home of their parent(s)”. Their main goal for foster care is to eventually “implement a plan for permanency for each child” (https://dss.sc.gov/content/customers/protection/fcs/index.aspx). Over half of the children in the foster care system have some sort of mental, emotional, or physical disability that requires more than just a stable home:

  • 40% of all children in foster care were born low birth weight or premature
  • 80% were prenatally exposed to substances
  • 30-80% have at least one chronic medical condition (ie: asthma, HIV, tuberculosis)
  • 25% have three or more chronic health problems
  • 30-50% are experiencing dental decay
  • 30-60% have developmental delays
  • 50-80% have mental and behavioral health problems
  • 20% are fully handicapped
  • 30-40% receive special education services
  • The rate of Post-Traumatic Stress Disorder (PTSD) for children in foster care is nearly double that of U.S. combat veterans. (American Psychological Association’s Children Youth and Families Office, 2012)

Studies show that this population of children experiences higher rates of maltreatment, especially physical or emotional neglect and sexual or physical abuse. They experience more placement instability with lower rates of adoption or permanency than their non-disabled peers in the foster care system. This placement instability results in a fractured educational experience with little consistency. The children are more likely to be on psychotropic medications and have a higher risk of institutionalization than children with disabilities outside the foster care system. The negative outcomes for this population are not limited merely to childhood; they also extend into adulthood, as outcome studies of disabled children in the foster care system later in life reveal higher rates of homelessness, substance abuse, unemployment, criminality, and mental health problems.

I believe that these disconcerting outcomes for children with disabilities are indications not of bad foster parents, but more of a fractured system. Perhaps the most profound issue with the system is the apparent lack of communication between the different service providers who serve children with disabilities in the foster care system. Schools, families, social workers, foster care case managers, disability advocacy groups, and other related services must communicate regularly to provide children with the support they need. This lack of communication is exacerbated by the fact that the social workers, foster care caseworkers, and child protection investigators are not typically trained to identify or support children with disabilities. They, therefore, underreport the number of children in their caseloads who have disabilities, resulting in poor placement decisions for the children.

Because the social service providers lack training, the foster and adoptive parents do not in turn receive appropriate training to support children with disabilities. Additionally, the social service providers are unaware of training programs available through other agencies, universities, or community colleges. Often when children with disabilities are placed with a family the parents are not aware of their disabling conditions, special needs, or of how to care for the children. Feeling underequipped to support the children; the families often return them back into the system, contributing to even more placement instability for the children. Even when families are aware that the child has a disability, the foster and adoptive parents have many misconceptions about what parenting a child with a disability is like, and, are thus unprepared to care for the child, although their intentions may be admirable.

While the foster care system for children with disabilities is fractured, it is not irreparably broken. The mending of the system will be difficult, but it is not impossible. It will take the dedication and collaboration of the child welfare services, disability services, and advocacy groups, first and foremost to educate the child welfare workers, foster care providers, and judicial personnel about children with disabilities and their rights. Many states are beginning to offer scholarships for those obtaining degrees in social work to focus their studies on developmental and intellectual disabilities, so that we have a foster care workforce that is more aware. (http://www.collegescholarships.org/scholarships/social-worker.htm)With members of the team trained in disabilities, children in the system will receive more intentional placement and the services they deserve. Training cannot end with the social workers, though; social workers need to apply what they have learned about disabilities by teaching future foster and adoptive families about how to care for this population of vulnerable children. One type of foster care program and clinical intervention that is already doing this is the Therapeutic Foster Care Program. http://www.childwelfaresparc.files.wordpress.com/2013/07/therapeutic-foster-care-exceptional-care-for-complex-trauma-impacted-youth-in-foster-care.pdf

Therapeutic Foster Care provides foster parents with twice the amount of training, so that they are prepared to care for children with emotional disabilities. The departments of social services or child welfare agencies need to partner with more advocacy groups that can provide specialized trainings like these on a broader scale for all the providers involved.

Lastly, to improve adult outcomes for the disabled individuals in the foster care system, social serves need to ensure that the children receive vocational and life skills training before they transfer out of the system. This would necessitate very intentional transition planning on the part of the caseworkers to ensure that, despite possible placement instability, these children are prepared for life outside of the system. Many advocacy groups have created resources to help professionals with this type of transition planning. One very useful free online guide comes from the Juvenile Law Center and the Pennsylvania Developmental Disabilities Council. http://www.jlc.org/sites/default/files/topic_related_docs/Transition%20Planning%20for%20Youth%20with%20Disabilities%20-%20A%20Guide%20for%20Professionals%20-%20November%202013.pdf.

The lives of disabled children in the foster care system could be improved by implementing a few key programs:

  • Training of social service providers to identify children who may have a disability;
  • Implement programs of intense training to all foster care parents on identifying children with disabilities, behavior management, and advocacy;
  • Transition planning; and
  • Interagency communication.

 Additionally, the programs that provide early intervention or special education services need to reach out to social service, provide cross training, and support the child welfare workers in supporting foster families and other community based programs for the children. 

References 

American Psychological Association’s Children Youth and Families Office. (2012). Systems of Mental Health Care for Youth in Foster Care. http://www.apa.org/pi/families/resources/newsletter/2012/01/winter.pdf

Hill, K.M, LaLiberte, T., & Lightfoot, E. (2011). Prevalence of children with disabilities in the child welfare system and out of home placement: An examination of administrative records. Social Work Faculty Publications. School of Social Work, University of St. Thomas, Minnesota.

Jee, S.H. et al. (2010). Improved Detection of Developmental Delays Among Young Chidlren in Foster Care. Journal of the American Academy of Pediatrics.http://pediatrics.aappublications.org/content/125/2/282.full.html.

Juvenile Law Center and the Pennsylvania Developmental Disabilities Council’s Guide for Professionals on Transition Planning for Youth with Disabilities from the Child Welfare System to Adulthood http://www.jlc.org/sites/default/files/topic_related_docs/Transition%20Planning%20for%20Youth%20with%20Disabilities%20-%20A%20Guide%20for%20Professionals%20-%20November%202013.pdf 

Scholarships for Social Workers:

http://www.collegescholarships.org/scholarships/social-worker.htm 

Therapeutic Foster Care: http://www.childwelfaresparc.files.wordpress.com/2013/07/therapeutic-foster-care-exceptional-care-for-complex-trauma-impacted-youth-in-foster-care.pdf

United Cerebral Palsy’s Project. (2006). A Case for Action for Children and Youth with Disabilities in Foster Care.

Katerina Maylock
GU’16

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The Implications of the Secondary Conditions of Fetal Alcohol Syndrome Disorders

Early Childhood Interventions October 28, 2015

Sophie Seibach has done an excellent job in outlining the major aspects of Fetal Alcohol Syndrome Disorders including definitions, incidents, and characteristics (http://bit.ly/1Pip1Px).   As we know, Fetal Alcohol Syndrome Disorder (FASD) is an umbrella term to describe conditions that can occur in a person whose mother consumed alcohol during pregnancy. The conditions can negatively impact a child’s physical, behavioral and intellectual development (National Organization for Fetal Alcohol Syndrome, 2014). Overall, FASD affects 2-5% of the US population (Petrenko, Tahir, Mahoney & Chin, 2014). Fetal Alcohol Syndrome Disorder is 100% preventable differentiating it from other developmental disabilities. If a woman does not drink alcohol during pregnancy or stops consuming alcohol once she knows she is pregnant, the effect of FASD will be non-existent or significantly lessened. A baby’s in-vitro brain development occurs throughout the entire pregnancy; therefore the sooner a mother stops drinking alcohol, the safer it will be for the child (CDC, 2015).

In the previous blog post about Fetal Alcohol Syndrome Disorder, Siebach discussed some of the potential characteristics of fetal alcohol syndrome disorder: intellectual disabilities, learning disabilities, poor impulse control, language deficits, memory deficits, and poor social adaptability.

This blog post will explore the secondary conditions associated with FASD. Secondary conditions are conditions that appear later in life as a result of FASD. These include high incidence of mental health conditions, disruptive school experience, issues with the law, and addiction to drugs and alcohol: 

  • 94% of individuals experience at least one mental health problem during their lifetime
  • 61% have disrupted school experience (suspended, expelled, dropped out)
  • 60% have encountered trouble with the law
  • 50% have been confined (e.g. jail, impatient psychiatric treatment)
  • 35% have alcohol or drug problems (Petrenko et al., 2014) 

These secondary conditions negatively affect the lives of people with FASD and act as barriers to full participation in society. These conditions can affect the individual, the family and greater society. For the individual a misdiagnosis of FASD can result in inappropriate interventions that do not specifically target the issues related to FASD. Another issue is the misinterpretation of the behaviors demonstrated by children with FASD, like inattention, distractibility as “willful behavior” (Petrenko et al., 2014).

People with little knowledge of FASD might think that people with the disorder can control their behaviors but choose not to. Petrenko et al. (2014) describe this as a “won’t v. can’t” mentality that can bring about harmful attitudes and stereotypes towards people with FASD. Some people with FASD who have been misdiagnosed or their behaviors misinterpreted develop maladaptive coping behaviors out of frustration. Families of people with FASD may also experience frustration and stress because of the challenges the child is experiencing Petrenko et al. (2014) reported the families express frustration by early misdiagnoses and issues related to the provision of services. Families report issues with qualifying for services, receiving high quality services and maintaining services. The complications faced by people with FASD also have a cost for society. On average, a person with FASD uses between 1.6-2.5 million dollars per year (CDC, 2015) for services and supports including medical, educational, and social service support. Furthermore, incarceration, addiction and school disruption have significant additional societal costs.

Recognizing FASD early and providing appropriate services may limit the detrimental effects of secondary conditions. Appropriate services will assist the child and family in managing behavior, reaching academic potential, and teaching compensatory strategies for successful participation in the community. The most important aspect of prevention is early diagnosis and recognition, as children who are diagnosed later in life are far less likely to benefit from services. We must also guarantee the availability of services that meet the need of the family and child. It is important that these services can be found within a family’s own community (Petrenko et al. 2014). This is particularly problematic for adults with FASD as, in general, the provision of services for adults with disabilities is poor. Finally, we must ensure that people with FASD live in a nurturing and stable environment that is non-abusive (Clarke & Gibbard, 2012).

Fetal Alcohol Syndrome Disorder is 100% preventable and it is extremely important that we work to raise awareness of the disorder in order to limit the number of people affected. However, it is important to support people with FASD currently and to work to reduce the secondary conditions that have such high costs for the individuals, families and society.

References

Clarke, M. E., & Gibbard, W. B. (2003). Overview of Fetal Alcohol Spectrum Disorders for Mental Health Professionals. The Canadian Child and Adolescent Psychiatry Review12(3), 57–63.

Center for Disease Control and Prevention. (2015) Fetal Alcohol Spectrum Disorder. Available from: http://www.cdc.gov/ncbddd/fasd/facts.html

Petrenko, C.L., Tahir, N., Mahoney, E.C., & Chin, N.P. (2014). Prevention of secondary conditions of fetal alcohol spectrum disorders: identification of systems-level barriers. Maternal Health Journal, 18(6):1496-505,

National Organization on Fetal Alcohol Syndrome. (2014). FASD: What Everyone Should Know. Available from:http://www.nofas.org/wp-content/uploads/2014/05/Fact-sheet-what-everyone-should-know.pdf

Emily Fletcher
Georgetown University’16

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