- by Kimberly Woolery, M.S., BCBA
When you envision Jamaica, what comes to mind? White sandy beaches? Waterfalls? Majestic mountain ranges and traditional island beats such as Reggae and Dance-hall? Maybe it’s the fastest man in the world and triple gold medalist, The Hon. Usain Bolt. It could even be the soul food that’s rich in signature spices and flavors accompanied by the sweet aroma of our world-famous Jamaican Blue Mountain Coffee. Jamaica is a vibrant island with unique cultural beliefs and practices that are influenced by a long and rich history.
However, in relation to Autism and it’s adequate treatment, Jamaica’s statistics are not up to par with first world countries. There are many diagnosed and undiagnosed individuals with autism that either don’t receive services or they get the bare minimum. The way Jamaicans perceive autism and evidence-based treatment is almost incompatible with the way it is implemented in first world countries.
To better understand the challenges we face as a nation, we must look at:
The Effects of Colonialism
The Prevalence of Religion
The Stigma of Mental Health Disorders
Limited Financial Resources
Ethical Challenges in Delivering ABA Services
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The Effects of Colonialism
You may be wondering why colonialism is relevant in 2017. Putting things in perspective, Jamaica gained independence from Britain on August 6, 1962, a mere 55 years ago! Sociologist Frederic Christie states that “… if we mean that a whole society [must] change its defining institutions, that may take millennia” (Christie, 2015). He continues by saying “Change in life and in society isn’t automatic. It’s hard-won. It requires raising consciousness, making people think in a new way. We have a natural cognitive dissonance that makes it very hard for us to admit we were wrong or ignorant or closed-minded. But that admission is what leads people to change their minds“.
Jamaica still lives in a post-colonial society. The population is made up of 97% of people who are of partial or total African descent which is comprised of blacks, mixed race (European and African descent), Black-East Indians and Black-Chinese.
Now, I know what you’re thinking- why hasn’t a predominantly black society bounced back from colonialism yet? The answer lies in the fact that during the British colonial reign, white slave owners instilled the beliefs in slaves that they were mentally unfit, dim-witted and sub-par human beings. This created a racial distinction that spawned a phenomenon, The Hon. Professor Rex Nettleford – a Jamaican scholar, social critic, choreographer and the former Vice Chancellor Emeritus of the University of the West Indies coined it “Whitedom” and “Blackdom”.
“Whitedom” is often associated with the more “civilized” part of society (which refers to those who are lighter in skin color). It is commonly known that those of African descent who are mixed with other ethnic groups have a higher place in society than those that are strictly of African descent. On the other hand, “Blackdom” is associated with the primitive part of the population (those who are darker in skin color). This social system has created the belief among Jamaicans that light skin color is superior to dark skin. Classism is also one of Jamaica’s greatest enemies, leaving the major cities to sometimes appear more segregated than southern parts of the United States.
Religion
Religion is a huge part of everyday life in Jamaica. It impacts how people behave, eat, drink and act according to their beliefs. Jamaica was built on Christian principles and is still ingrained in its society through the efforts of white slave owners to subdue their slaves. If you were to drive around the island, it is very likely that you would come across a church on almost every street corner. Jamaica reportedly has the most churches per square mile of any country of the world with over 1,600 churches all over the island. English plantation owners in Jamaica initially adamantly refused to share their religion with the slave population. The church was believed to be too sophisticated for people “of lesser breed”. Davidson reports that the Bible itself did not reach Afro-Jamaicans until the 1790’s. “Never (before) had the enslaved people held a book in their hands and certainly not the Bible, for it was not regarded with favor on the Jamaican sugar-and-slave plantations”(Jamaica and Religion, n.d.).
Afro-Jamaicans were not allowed to attend school or even attend church. Therefore, they sought comfort in African religions such as Obeah, Myalism and Kumina. “Barred from the church, the school, and any form of marriage, the African-Jamaicans were derided as being superstitious, stupid and immoral”, continues Marcia Davidson in her article “Jamaica and Religion”; sadly, these are thoughts still ingrained in our subconscious today. However, when the missionaries became their teachers, the Bible became their holy book. God became their comforter, and this was their “certificate of identity” as the Bible preached that everyone was worthwhile. Centuries later, this would explain why Jamaicans are more likely to turn to religion first for help.
Due to the influence of religion, a parent with a new diagnosed child may see this as punishment for committing a grave sin (or a sin committed by their ancestors). This could also explain why a parent who is witnessing their child engaging in severe maladaptive behaviors (particularly self injury and aggression) will be inclined to believe their child is possessed by malevolent spirits. Naturally, they resort to spiritual healers to have these entities exorcised from their child instead of seeking a doctor’s opinion first.
Stigma
Jackson-Williams reported in the West Indian Medical Journal, that “Jamaicans have been found to be reluctant to seek help for mental health issues, and would rather rely on themselves than consulting formal mental health services such as counselors, therapists, psychologists and psychiatrists. Further, (as reported above), there seems to be the notion that Caribbean nationals would rather seek help from religious leaders or engage in religious coping [mechanisms]” (441).
A Jamaican may be experiencing symptoms of mental distress or see their child experiencing similar symptoms along with significant developmental delays, but they do not believe that they or their child would benefit from mental health services. They are typically reluctant to seek help. Jamaicans are also more likely to seek the help of a spiritual healer (e.g. Obeah man or mother woman) and use herbal or natural remedies first, and as a last resort the help of a medical professional. Parents may refuse to have their child formally diagnosed by a developmental pediatrician or clinical psychologist because they are afraid of their child being stigmatized. In some cases, parents may even get angry with the clinician providing the diagnosis and go through a never-ending stage of denial. Local developmental pediatricians report that parents experience guilt and shame upon receiving a diagnosis.
Perception of Mental Disorders: Jamaica vs. the United States
Availability of Services
While Jamaica has acknowledged the spike in autism diagnoses, a very small percentage of the population knows and understands what autism is, not to mention ABA. ABA therapy is often misunderstood due to a misrepresentation of behavior therapy that may be offered by individuals who aren’t Board Certified and may not adhere to the BACB’s Ethical Code and Practice Guidelines for Autism. Due to this misrepresentation, the general response from parents who have experienced ABA is typically that “it doesn’t work, it’s ineffective and it’s a waste of money and time”.
The individuals who do receive ABA therapy typically receive 1-2 hours of ABA therapy per week. This is a drastic difference from the 10-40 hours per week that is offered in the United States.It is also common for parents whose children are actively receiving services, (having been referred by their doctor) to outwardly refuse to even use the word autism – even if it is evident their child is on the spectrum and they have a confirmed diagnosis.
“Jamaica has one of the highest income disparities in the world. Remittances (money sent privately to the island by Jamaicans living abroad) have become an even larger source of income for the country than tourism, its largest industry. Stately manors and plantations overlook shantytowns made of corrugated metal. Billion-dollar resorts attract wealthy foreigners” (Olsen, 1999).
According to the World Bank, the GDP per capita in Jamaica as of 2015 was just a little over 5,000 USD, whereas the GDP per capita in the US is over 50,000. Davis reported in the Jamaican Gleaner in 2015 that “In Jamaica, our minimum wage is US $1.21 per hour, US $9.68 for an eight-hour day, and US $48.40 for a 40-hour workweek!”. The average cost of taking care of a child with special needs (with just therapy and special education included), can range anywhere from US $810 (JMD$104,259) to USD $1000 (JMD $128,715) per month.
This is not limited to ABA therapy, but includes speech therapy, occupational therapy, physiotherapy, paying a paraprofessional 5 days a week (7:00 AM – 3:00 PM) accompany your child to school and therapy and 1:1 tutoring from a special education teacher (again all the services mentioned above are typically at the bare minimum). This does include the cost of paying tuition for a school where your child may get the individualized attention he/she needs.
This falls short of the average USD $810 that an American parent would need to spend on a child undergoing ABA and other recommended treatments. Therefore, the question remains – how on earth do we bridge this stark economic gap and translate the Westernized model of ABA to fit developing countries?
Insurance Funding?
In the U.S, due to IDEA (which was passed in 2004), funding is available to children in need of ABA services although this varies by state and even county. Although this is comparing apples to oranges, in contrast, Jamaica is a developing nation that is struggling to provide adequate financial assistance for children with special needs. Unfortunately, the government is not actively involved in providing financial assistance for these families. Currently, it appears that the only way the child can be covered for ABA therapy if the practitioner certified is the parent or the parent works for the military – the Jamaica Defense Force (JDF).
Ethical Issues in Behavior Analytic Service Delivery
Adhering to the BACB® Professional and Ethical Compliance Code may be problematic.
2.07 Maintaining Confidentiality: This states that “Behavior analysts have a primary obligation and take reasonable precautions to protect the confidentiality of those with whom they work or consult, recognizing that confidentiality may be established by law, organizational rules, or professional or scientific relationships” (BACB®, 2017). This guideline may cause many ethical conflicts given that Jamaica has a total population of 2.7 million (Davis, 2015).
There is an estimated 1 million people who live in Kingston, the capital of the island. Given the pervasive income inequality in Jamaica, only the top 5-10% earners in the island will be able to afford the recommended services. This represents a small portion of the Jamaican population (and a small circle of individuals who interact with one another) which makes maintaining confidentiality a problem. However, I want to be clear and say that this is not to say that healthcare professionals or members of the medical and legal fraternity do not take confidentiality seriously or adhere to their ethical code.
4.08 Considerations Regarding Punishment Procedures: Behavior analysts recommend reinforcement rather than punishment whenever possible. Due to cultural norms and values, this guideline may become an ethical conflict. In Jamaican culture, certain methods that are often categorized as punishment are not seen as aversive but rather as an integral practice in childhood rearing. It is socially acceptable in Jamaica to spank a child when he/she has misbehaved.
In summation, Jamaica has splendid scenery along with vast cultural and socio-economic norms that have shaped up throughout it’s long history. The hope is to improve and disseminate behavior analytic practices across Jamaica to better treat socially significant behavior with cultural sensitivity and make it more available to all people.
References
Christie, F. (2015, April 22). Does society change in 1 decade or in 3 decades? Retrieved July 17, 2017, from https://www.quora.com/Does-society-change-in-1-decade-or-in-3-decades
Davidson, M. (2015, March 15). Religion plays a major role in the Jamaican society and culture. Read our overview of Religion in Jamaica. Retrieved July 17, 2017, from http://jamaicans.com/religion/
Davis, G. (2015, January 28). Minimum wage shows minimum respect. Retrieved July 17, 2017, from http://jamaica-gleaner.com/gleaner/20150128/cleisure/cleisure2.html
Jackson Williams, D. (2013). Are Jamaicans really that stigmatizing? A comparison of mental health help-seeking attitudes.West Indian Medical Journal,62(5). Retrieved July 17, 2017, from http://caribbean.scielo.org/scielo.php?pid=S0043-31442013000500011&script=sci_arttext
Jamaican Religion – An Overview of Religions in Jamaica. (n.d.). Retrieved July 17, 2017, from http://www.my-island-jamaica.com/jamaican_religion.html
Nelson, E. (n.d.). Religion in Jamaica: Finding the Self through Finding God. Retrieved July 17, 2017, from https://debate.uvm.edu/dreadlibrary/ENelson.htm
Olsen, J. T. (1999, October 4). The Island of Too Many Churches. Retrieved July 17, 2017, from http://www.christianitytoday.com/ct/1999/october4/9tb064.html?start=2
Samms-Vaughan, M. (2012, August 29). Research on autism in Jamaica. Retrieved July 17, 2017, from http://jamaica-gleaner.com/gleaner/20120829/health/health1.html
Williams, D. M. (2014, July 6). Your child is autistic, what’s next? Retrieved July 17, 2017, from http://www.jamaicaobserver.com/news/Your-child-is-autistic–what-s-next-_17085144
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Kimberly Woolery
Kimberly is a Board Certified Behaviour Analyst (BCBA) and Registered Mental Health Counselling Intern (RMHCI) who specializes in providing behavioral telehealth services for children diagnosed with Autism Spectrum Disorder (ASD).
With a bachelor’s degree in Philosophy and a minor in Psychology from Florida International University (FIU) and a master’s degree in Counseling with a concentration in Advanced Applied Behaviour Analysis from Nova Southeastern University, she has an extensive background in assessments, interventions, treatment planning, and caregiver consultation.
Kimberly has presented her research on cultural competency, sensitivity, cross-cultural barriers, best practices in culturally responsive treatment, the benefits of telehealth in ABA, and caregiver consultation at ABAI conventions.
