EI Talk: A Blog for Early
Childhood Professionals

Zika and Microcephaly: Implications for Early Intervention Services in Brazil Part 2

Early Childhood Interventions February 22, 2016

In 2015, Zika virus infected an estimated one-half to over 1 million  people in Brazil. The outbreak was focused in the more rural Northeast part of the country, but the virus has spread through Brazil and surrounding countries (Hennessey, 2016). Zika infections are largely mild, and result in fever, rash, and joint pain. Hospitalization for the disease is rare (“Zika Virus,” 2016). However, since the start of the epidemic, the country has experienced a massive increase in suspected cases of microcephaly in infants. While the role of Zika in causing microcephaly in infants has not been established, the rate of microcephaly in infants rose from 0.5-2 cases per 10,000 to an estimated 99.7 cases per 10,000 in 2015 (Ventura, Maia, Bravo-Filho, Gois, & Belfort, 2016). Between mid-2015 and February 2016, 4783 children were suspected of having  microcephaly.  One thousand one hundred and three children have received comprehensive examinations (CT Scans, MRI) and 403 of these have received a conformational diagnosis of microcephaly (Victora, Schuler-Faccini, Matijasevich, Ribeiro, Pessoa, & Barros, 2016). The remaining 3670 have yet to complete full examinations. While it is likely that the increased prevalence of microcephaly is lower than currently estimated, the country is still experiencing a significant increase in children with microcephaly. For example, Pernambuco, a state in the Northeast region of Brazil, usually expects a maximum of 45 reported cases each year, but in 2015, 26 times that number (n=1170)were reported (Butler, 2016).

The rise in the number of children with microcephaly has significant implications for Brazil’s service system for children with disabilities. Microcephaly is usually caused by abnormal brain development, and puts children at risk for developmental delays, seizures, motor difficulties, and hearing and vision issues (CDC, 2016). Proper care of children with microcephaly requires not only medical imaging and evaluation for diagnosis, but comprehensive follow-up with a health care team, early intervention, and educational supports and services (Butler, 2016). Because of the multiple disabilities seen in children with microcephaly the children often need treatment for seizures, developmental disability, and ophthalmological and audiological disorders, and many children require speech, occupational, and physical therapy and special education to maximize their potential (American Academy of Neurology, 2009).

Numerous studies have shown that Early Childhood Development (ECD) and Early Intervention (EI) programs provide a wealth of benefits for children with disabilities and their families. A study of 70 ECD programs in the U.S. revealed that such programs yield positive effects on IQ and lead to better-developed abilities at the point of entry into school and greater achievement in the earlier school years (UNICEF, n.d.). Despite such facts, Brazil has a long history of being unable to provide high quality and equitable access to health and educational services for children with disabilities. Child development has historically been a low priority in health and education services in Brazil, and guidelines for care and integration of children with disabilities are not widely available (Eickman et al., 2003).

The discussion of Brazil’s capacity, or lack thereof, to help children with disabilities is ever more relevant with this increase in the number of children with microcephaly, no matter the cause. Early Intervention programs would serve as an important initial step in working with children with microcephaly and other developmental delays to help them reach their full potential. A great example of this in action is a project in Brazil that identified children between 0-3 years of age with developmental disabilities, and then enrolled them into community-based intervention programs with the aim of helping them reach their full potential. Mothers and fathers were taught how to interact with their children and provide developmentally appropriate care and stimulation to promote development, functional skills, and socialization (UNICEF, n.d.).  To capitalize on the benefits of early intervention, Brazil must make significant enhancements to an already fragile health care and intervention system for young children with disabilities:

  • increase public awareness about the rights of children with disabilities and systematically mobilize all sectors to create greater demand of appropriate services;
  • develop a robust community-based system of developmental services and supports for infants and toddlers with disabilities and delays;
  • develop strategies that allow greater flexibility in responding to the unique and various needs of children with disabilities;
  • address misconceptions, prejudices, and discriminatory practices that promote the exclusion of children with disabilities such as in schools;
  • expand a support system for parents to strengthen their capacity to demand rights and seek services; and
  • provide professional development so that teachers, therapists, and child care providers possess the skills and knowledge to serve children and families using evidence based practices (UNICEF, n.d.).

 Improvements in health care coverage have led to fewer disparities in health care access in Brazil, but the system’s strengths in primary care are not always reflected in specialized care availability. In 1988, Brazil established the Unified Health System (UHS), and currently more than 75% of the population relies exclusively on the system for access to health care. Primary care is provided for free at the point of service, and subsidies for heart surgery, medical imaging, lab diagnostics, vaccines, and many essential medicines increase access to necessary health care for much of the population. The UHS works with the Family Health Program, which employs teams of healthcare workers to provide primary care to over 97 million Brazilians in poor and isolated communities. Together, these services have helped to decrease regional and economic disparities in primary health care access.

However, disparities in access, especially for specialized services like early intervention, still exist. For example, Jurberg & Humphreys (2010) found three out of four children in a Southeast state did not receive appropriate intervention for their developmental disabilities. Access to care is likely lower in the more rural North and Northeast regions. Community health workers regularly perform home visits for primary and preventative care, but they rarely identify or refer children with disabilities to appropriate developmental services even when available (Paula, Ribeiro, Fombonne, & Mercadante, 2011). In Pernambuco, community health workers are not well-trained to diagnose or or treat children with developmental delays. A 2003 study found that developmental milestones were recorded only 1% of the time during visits, though growth and immunizations were well documented (Eickmann et al., 2003). However, children with microcephaly can be identified through simple head circumference measurements thus health workers and service providers should be readily prepared to make such assessments and subsequently provide referral to adequate services.

Equal access to education regardless of disability became constitutionally protected in Brazil after 2001, when a law required all children ages 7-14 to attend regular, rather than specialized, school. However, children with disabilities are still twice as likely to not attend school and four times more likely to be illiterate than children without disabilities (UNICEF Brazil, 2003). Most schools accept children with disabilities, but they do not always make full effort to integrate them. In 2000, only 21% of children with disabilities attending inclusive schools while 79% attended special schools (UNICEF Brazil, 2003). Public policies and guidelines for effective inclusion are not widely available, and specialized services for children are not easily accessible in many parts of the country (Silva, Goncalves, & Alvarenga, 2012).

Brazil’s system for intervention before school age is equally inadequate and the failings of the public health service are most intensely felt by families of children with microcephaly. Officials admit to their inability to provide children with appropriate services, which for children with microcephaly include intensive physical therapy, speech therapy and occupational therapy (Sandy, 2016). All of these are rarely, if ever, available to Brazilian families (Sandy, 2016). Jailson Correia, a regional health secretary, asserts that the government is “far from providing the high quality healthcare that Brazilians deserve” (Sandy, 2016). For families with children with disabilities, prejudice against those with disabilities remains as one of the biggest barriers to adequate access to services. According to the founder of the NGO Escola de Gente (translates to “School of the People”),

“When a disabled child is born in Brazil, the family is often alone… And they remain alone because of the lack of support from politicians and segregation from society” (Sandy, 2016).

Families often struggle to afford the necessary services, which include doctors and various modes of therapy, as they often find themselves receiving little to no aid from the state to help buffer the burden of costs.

In response to the rapidly rising incidence of children with microcephaly, the government of Brazil published a national plan for responding to the occurrence of microcephaly related to Zika virus infection, as well as national guidelines for early intervention of babies with microcephaly (Ministério de Saúde, 2016; “Saúde divulga diretriz nacional…”, 2016). But how prepared is Brazil to mobilize a support network, essentially overnight, for the 4,000 new and upcoming cases of microcephaly? To put this into perspective, it is estimated that DC’s early intervention system for children with disabilities supports about 700 families at any given time. In order to provide the adequate care, the system uses a network of about 500 service providers. Brazil’s government is faced with a serious problem. Current emphasis on prevention is appropriate, however, the government and civil society must address the growing public health and education crises facing Brazil. The reality is that the country now has more than 4,000 children with or at very high risk for having disabilities who will need a host of supports and services all at the same time.

Beyond the national response, the international response to the spread of Zika and the growth in microcephaly have been arguably minimal. For example, the World Health Organization released Zika: Strategic Response Framework & Joint Operations Plan (2016), only after widespread criticism of its very delayed response to the situation. Furthermore, though the framework claims to have “been developed to guide the international response to the current cluster of congenital malformations (microcephaly),” it is clear that the major focus is still on preventing further infections and not on managing existing cases of microcephaly (WHO, 2016). The same rings for all other major international health organizations, and little can be found on response strategies for aiding families of children with microcephaly.

It is time for Brazil, the international community, and civil society to recognize the needs of the children and families and begin creating a system of community based services and supports! 


  • American Academy of Neurology. (2009). Practice Parameter: Evaluation of the Child with Microcephaly [Chart]. Retrieved from https://www.aan.com/Guidelines/home/GetGuidelineContent/364
  • Butler, D. (2016). Zika virus: Brazil’s surge in small-headed babies questioned by report. Nature,doi:10.1038/nature.2016.19259
  • Centers for Disease Control and Prevention. (2016, January 29).  Facts about Microcephaly [Fact sheet]. Retrieved from Centers for Disease Control and Prevention website: http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html
  • Centers for Disease Control and Prevention (n.d.). Zika Virus. Retrieved February 5, 2016, from http://www.cdc.gov/zika/index.html.
  • Eickmann, S. H., Lima, A. C., Guerra, M. Q., Lima, M. C., Lira, P. I., Huttly, S. R., & Ashworth, A. (2003). Improved cognitive and motor development in a community-based intervention of psychosocial stimulation in northeast Brazil. Developmental Medicine and Child Neurology, 45(8), 536-541. doi:10.1017/S0012162203000987
  • Hennessey, M. (2016). Zika virus spreads to new areas—region of the Americas, May 2015–January 2016. MMWR. Morbidity and Mortality Weekly Report65.
  • Jurberg, C., & Humphreys, G. (2010). Brazil’s march towards universal coverage. Bulletin of the World Health Organization, 88(9), 646. doi:10.2471/BLT.10.020910
  • Ministério de Saúde. (2016). Protocolo de atenção à saúde e resposta à ocorrência de microcefalia relacionada à infecção pelo vírus Zika: plano nacional de enfrentamento à microcefalia. Retrieved from http://portalsaude.saude.gov.br/images/pdf/protocolo-sas-2.pdf.
  • Ministério de Saúde. (2016). Saúde divulga diretriz nacional para estimulação precoce de bebês com microcefalia. Retrieved from http://portalsaude.saude.gov.br/index.php/cidadao/principal/agencia-saude/21681-saude-divulga-diretriz-nacional-para-esimulacao-precoce-de-bebes-com-microcefalia.
  • Paula, C. S., Ribeiro, S. H., Fombonne, E., & Mercadante, M. T. (2011). Brief report: Prevalence of pervasive developmental disorder in Brazil: A pilot study. Journal of Autism and Developmental Disorders41(12), 1738-1742.
  • Sandy, Matt. (2016, February 5). In Brazil, stigma and poor care afflict microcephaly sufferers. Aljazeera America. Retrieved from
  • http://america.aljazeera.com/articles/2016/2/5/brazil-widespread-stigma-surrounds-microcephaly.html
  • Silva, F. T., Gonçalves, E. A. V., & Alvarenga, K. D. F. (2012). Inclusion of individuals with special needs in regular education: a literature review. Jornal da Sociedade Brasileira de Fonoaudiologia24(1), 96-103. PMID: 22460380
  • UNICEF. (n.d.). Early Childhood Development: The key to a full and productive life. Retrieved from http://www.unicef.org/dprk/ecd.pdf
  • UNICEF Brazil. (2003). Report on the situation of children and adolescents in Brazil. Retrieved from http://www.unicef.org/brazil/english/siab_english.pdf
  • 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   Lancet387(10015), 228.
  • Victora, C.G., Schuler-Faccini, L., Matijasevich, A., Ribeiro, E., Pessoa, A., Barros, F.C. (2016). Microcephaly in Brazil: how to interpret reported numbers? The Lancet, 387(10019), 621-624. doi:10.1016/S0140-6736(16)00273-7
  • WHO. (2016). Zika: Strategic Response Framework & Joint Operations Plan. Retrieved from http://www.who.int/emergencies/zika-virus/strategic-response-framework.pdf?ua=1

Eleanor Birch and Jamie King (Georgetown University ’17)

Read More

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 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. 


  • 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)

Read More

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. 


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)

Read More

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. 


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:


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

Read More

Recent Posts

Facilitating Attuned Interactions (FAN) and Its Relevance to EI Services

Soumia Yesraoui March 08, 2019

Italian Early Childhood Education Approaches: Montessori and Reggio Emilia

Early Childhood Interventions January 17, 2019

The Intersection of Legislation, Immigration, and Disability

Early Childhood Interventions October 30, 2018

Early Childhood Education and Disability Bias

Toby Long October 30, 2018

Skipping the Straw: The Intersection of Sustainability and Accessibility

October 30, 2018

Inclusion of Children with Disabilities in Early Childhood Programs: US Policy Statements

Early Childhood Interventions April 15, 2018

ECI in DC: What do we know about Part C Implementation?

Early Childhood Interventions March 14, 2018

Children who Experience Homelessness: Policy Implications

Early Childhood Interventions January 31, 2018

Assistive Technology in Early Intervention

Early Childhood Interventions January 16, 2018

Fetal Alcohol Spectrum Disorder in Native American Communities: Inadequate Education and Inaccessible Health Services

Early Childhood Interventions September 13, 2017