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

A preschool age girl with a prosthetic leg is at a medical appointment. The child is meeting with her physical therapist. The child is sitting on the floor building with wooden toy blocks. The medical professional is sitting on the floor assisting the girl.

Posted in Disability Diversity, Equity, Inclusion Intervention Policy  |  Tagged

by 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! 

References

  • 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 Report, 65.
  • 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 Disorders, 41(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 Fonoaudiologia, 24(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   Lancet, 387(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)