Reflections on IDD in Cuba - AAIDD 2011 Delegation
We're off to Cuba to research the supports for individuals with IDD. This trip brings together my past with my professional passion. What an adventure!
Saturday, October 22, 2011
Home
On the plane heading to Texas I reflect on an amazing trip. We began with emotions of my family reunion, ended with closure as a colleague buried her family pictures in Cuba with prayers and tears, honoring her family, and in between, we saw much, noting the universality of developmental disabilities. It will take a long time to digest all, and perhaps it will be a lifetime, as I intend to stay in touch with new colleagues in Cuba, as well as an amazing set of new friends in our delegation. I was truly honored to have been a part of this extraordinary group on a once-in-a-lifetime adventure.
Speculations
Cuba's greatest problems are housing (literally falling apart), transportation (ditto) and an aging population. Cuban couples average less than 2 children, so fewer young adults will be supporting an increasing number of older ones in a system that guarantees full retirement for life at the government's expense.
So, what would happen if Cuba were to become accessible to us again for full travel and trade? What would happen if the embargo were lifted? All of us speculated on the impact, concluding that Cubans, themselves, may be naive about the power of money to influence change.
First, the government would need to assure businesses that they wouldn't be nationalized and lose everything as they did in 1959-60. Assuming that they can, as they've done with other countries that manage hotels, we expect to see a Habana Marriott, Hilton and even a Holiday Inn within a very short time. The McDonalds would come next, and Jay Leno would visit with other car collectors to get their fill of those precious old tanks that roam the streets. How soon before pickpockets are no longer the greatest threat?
The living conditions of people would improve, but the government would struggle to maintain a firm grip on ideology. Perhaps China could serve as a model, who knows? Regardless, the Cuban charm we saw in this trip would be modified, yet if the people would have better lives, the change would be for the best. It's not a simple problem, though, and as all complex sociopolitical issues, both countries must consider the impact before embracing a new relationship.
So, what would happen if Cuba were to become accessible to us again for full travel and trade? What would happen if the embargo were lifted? All of us speculated on the impact, concluding that Cubans, themselves, may be naive about the power of money to influence change.
First, the government would need to assure businesses that they wouldn't be nationalized and lose everything as they did in 1959-60. Assuming that they can, as they've done with other countries that manage hotels, we expect to see a Habana Marriott, Hilton and even a Holiday Inn within a very short time. The McDonalds would come next, and Jay Leno would visit with other car collectors to get their fill of those precious old tanks that roam the streets. How soon before pickpockets are no longer the greatest threat?
The living conditions of people would improve, but the government would struggle to maintain a firm grip on ideology. Perhaps China could serve as a model, who knows? Regardless, the Cuban charm we saw in this trip would be modified, yet if the people would have better lives, the change would be for the best. It's not a simple problem, though, and as all complex sociopolitical issues, both countries must consider the impact before embracing a new relationship.
Education in Cuba
Along the way, we've learned about the country and it's history and customs as told to us by our guide and speakers. Here's a bit on education.
Before 1959, 49% of Cuba's population was illiterate. These people were primality the campesinos, farmers who planted sugar and tobacco, but lived in abject poverty, reportedly exacerbated by the policies of Batista's government. In 1960, Fidel declared to the United Nations that within one year he would eradicate illiteracy, and he appears to have achieved his goal. Today, 98% of Cubans are educated and can read and write. Many have degrees and therein lies a major problem. These educated folks no longer care to work the fields, so there aren't enough workers to plant crops to feed Cubans. Furthermore, the country is becoming saturated with doctors, lawyers and other professionals, so these highly educated people are finding themselves assigned by the government to odd jobs, such as cab driving, craft sellers, waitresses, etc. All over we met degrees professionals who were not in their fields.
Back to education...teaching begins around 18 months when children enroll in Círculos Infantiles, or day cares. Education is based on Vygotsky's theory of development and influenced by Russian and German models of education.
Primary, or elementary school, starts at age 5 and lasts 6 years. Children in grades 1-4 wear blue uniforms and red bandanas, and children in grades 5-6 wear red uniforms. Secondary, or high school, lasts 3 years and the uniforms are yellow. Both primary and secondary education are compulsory.
Children graduate at around age 15, then have 2 options, politécnica or pre-universidad. The university track wears blue uniforms and goes for three years. At the end, students take a national test for their chosen field. If they don't pass, they are given 6-7 job alternative job choices. University schooling is free and typically lasts 5 years, although some specialties can take longer (e.g., medicine, foreign languages). After graduation, the person is assigned a job by the government where he/she must work for 2-3 years to repay the government. They can then stay or change employer.
All boys must join the army for one year before university studies. Military service is optional for girls.
Before 1959, 49% of Cuba's population was illiterate. These people were primality the campesinos, farmers who planted sugar and tobacco, but lived in abject poverty, reportedly exacerbated by the policies of Batista's government. In 1960, Fidel declared to the United Nations that within one year he would eradicate illiteracy, and he appears to have achieved his goal. Today, 98% of Cubans are educated and can read and write. Many have degrees and therein lies a major problem. These educated folks no longer care to work the fields, so there aren't enough workers to plant crops to feed Cubans. Furthermore, the country is becoming saturated with doctors, lawyers and other professionals, so these highly educated people are finding themselves assigned by the government to odd jobs, such as cab driving, craft sellers, waitresses, etc. All over we met degrees professionals who were not in their fields.
Back to education...teaching begins around 18 months when children enroll in Círculos Infantiles, or day cares. Education is based on Vygotsky's theory of development and influenced by Russian and German models of education.
Primary, or elementary school, starts at age 5 and lasts 6 years. Children in grades 1-4 wear blue uniforms and red bandanas, and children in grades 5-6 wear red uniforms. Secondary, or high school, lasts 3 years and the uniforms are yellow. Both primary and secondary education are compulsory.
Children graduate at around age 15, then have 2 options, politécnica or pre-universidad. The university track wears blue uniforms and goes for three years. At the end, students take a national test for their chosen field. If they don't pass, they are given 6-7 job alternative job choices. University schooling is free and typically lasts 5 years, although some specialties can take longer (e.g., medicine, foreign languages). After graduation, the person is assigned a job by the government where he/she must work for 2-3 years to repay the government. They can then stay or change employer.
All boys must join the army for one year before university studies. Military service is optional for girls.
Politics in Cuba
Cuba has one political party, the communist party. A group of 25 people can create another party, but the constitution would not allow that party to post a candidate for election.
Cuba sees itself as a true democracy because people vote for local municipal presidents, somewhat like mayors, every two and a half years. There are 169 of these municipalities. Additionally, the 16 provinces each elect an assembly. At the national level, the national assembly, described to us as parallel to our congress or a parliament, is comprised of municipal and provincial presidents, plus 50 seats appointed by the president of the national assembly, currently Ricardo Alarcón de Quesado. This body reportedly makes laws which are then implemented by the 20-member council of state. And additional council of ministries represents specialties, such as transportation, health and education, the two latter being most involved in our studies on this trip. Raul is president of both councils, and we were told that he cannot pass any laws.
I understand the structure, but something seemed to be missing in the explanation. I would like to better understand the balance of power, especially in the greater context of how private enterprise is expected to grow, how social services will promote greater individual freedoms that include people with DD, such as marriage and group homes for persons with aging parents, supported employment without government placement, etc., etc.
Cuba sees itself as a true democracy because people vote for local municipal presidents, somewhat like mayors, every two and a half years. There are 169 of these municipalities. Additionally, the 16 provinces each elect an assembly. At the national level, the national assembly, described to us as parallel to our congress or a parliament, is comprised of municipal and provincial presidents, plus 50 seats appointed by the president of the national assembly, currently Ricardo Alarcón de Quesado. This body reportedly makes laws which are then implemented by the 20-member council of state. And additional council of ministries represents specialties, such as transportation, health and education, the two latter being most involved in our studies on this trip. Raul is president of both councils, and we were told that he cannot pass any laws.
I understand the structure, but something seemed to be missing in the explanation. I would like to better understand the balance of power, especially in the greater context of how private enterprise is expected to grow, how social services will promote greater individual freedoms that include people with DD, such as marriage and group homes for persons with aging parents, supported employment without government placement, etc., etc.
Thursday Visits
On Thursday, our last full day of study, we started out at the Zenén Casas Centro de Rehabilitación in Old Habana. The school was inaugurated in 1999, but the building has murals and structures from the original Old Habana glory days where it served as the school of law.
Làzara Feifer, the center's director, met us and explained that the center has a census of 32 children and a capacity of 40' ages 1-20. It's a day program for rehabilitative treatment for kids with severe physical issues and ID. We were joined by Dra. Ivón V. Mayo Chirino, the psychologist, who spoke a bit of English. The center invites mothers to assist, but the added that, unlike other programs, parent participation is not required. It serves only the Old Habana area, providing outreach consultation for up to 3 months to people outside of their catchment area.
At this center, as all others, we were treated with utmost courtesy, yet more so than in other sites, evidence of scripting for visitors was noticeable. When a delegation member approached an aide (called "nanas") to ask about a child, a staffer tripped over herself hustling to intervene, then firmly stated that she, and not the nana, would answer questions. The place was clean and kids were freshly dressed and combed. We didn't see enough kids to account for the census. We saw maybe 8 or so children, leaving me wondering where were the rest. Curiously, one girl with Angelman's was the daughter of an administrator of the center. We also saw a 12yo child with Crit du Chat.
The center had excellent dental facilities in-house. Additionally, we were introduced to ozone therapy, an alternative method used to heal wounds, boost the immune system, and promote other benefits in support of traditional medicines. I'll be searching for more information on this.
Our last official stop was a community project for people with Down syndrome located in a church next to a convent. Dra. Claudia Figueroa was not there, but psychologist Ana Maria led the program. She explained that this day activity center encouraged development of daily living skills, was affiliated with the Cuban School of Ballet for psicoballet and encouraged self-expression, as shown by a dance and traditional poems and conga with faroleros. Parents were present, but their ongoing role seemed clear and they appeared a bit cautious. It would have been interesting to talk with them one-on-one for longer to get a better sense of their opinions.
Interesting point on marriage: getting married in Cuba requires a permit, which explains why so few young couples bother with the formality (plus religion is not as influential in Cuba these days). When a couple with DD wanted to marry, it took 5 years to get the permit. Sadly, the families had the couple swapping homes every 15 days--15 with one then the other--and this eventually destroyed the marriage. Many parents fear these outcomes, along with the usual fears of parents of people with ID, so marriages are rare. Very interesting.
Làzara Feifer, the center's director, met us and explained that the center has a census of 32 children and a capacity of 40' ages 1-20. It's a day program for rehabilitative treatment for kids with severe physical issues and ID. We were joined by Dra. Ivón V. Mayo Chirino, the psychologist, who spoke a bit of English. The center invites mothers to assist, but the added that, unlike other programs, parent participation is not required. It serves only the Old Habana area, providing outreach consultation for up to 3 months to people outside of their catchment area.
At this center, as all others, we were treated with utmost courtesy, yet more so than in other sites, evidence of scripting for visitors was noticeable. When a delegation member approached an aide (called "nanas") to ask about a child, a staffer tripped over herself hustling to intervene, then firmly stated that she, and not the nana, would answer questions. The place was clean and kids were freshly dressed and combed. We didn't see enough kids to account for the census. We saw maybe 8 or so children, leaving me wondering where were the rest. Curiously, one girl with Angelman's was the daughter of an administrator of the center. We also saw a 12yo child with Crit du Chat.
The center had excellent dental facilities in-house. Additionally, we were introduced to ozone therapy, an alternative method used to heal wounds, boost the immune system, and promote other benefits in support of traditional medicines. I'll be searching for more information on this.
Our last official stop was a community project for people with Down syndrome located in a church next to a convent. Dra. Claudia Figueroa was not there, but psychologist Ana Maria led the program. She explained that this day activity center encouraged development of daily living skills, was affiliated with the Cuban School of Ballet for psicoballet and encouraged self-expression, as shown by a dance and traditional poems and conga with faroleros. Parents were present, but their ongoing role seemed clear and they appeared a bit cautious. It would have been interesting to talk with them one-on-one for longer to get a better sense of their opinions.
Interesting point on marriage: getting married in Cuba requires a permit, which explains why so few young couples bother with the formality (plus religion is not as influential in Cuba these days). When a couple with DD wanted to marry, it took 5 years to get the permit. Sadly, the families had the couple swapping homes every 15 days--15 with one then the other--and this eventually destroyed the marriage. Many parents fear these outcomes, along with the usual fears of parents of people with ID, so marriages are rare. Very interesting.
Business in Cuba
As we knew, there are no private medical practices in Cuba, but in other areas, the government is trying to encourage private enterprise. I even saw a program on tv in which a university professor, targeting an audience of young adults, explained how Cubans need to learn about global economics, enterprise, taxes and commerce. Clearly the lessons of the "special period" were driven home...
The Special Period is a euphemism for the time when the Soviet Union fell and Cuba lost Russian support. The population had not used Russian help to become self-sufficient so when Russia withdrew, 80% of Cuba's markets closed and the nation was a drop of 35% in GNP. Poverty and hunger were rampant, with malnutrition resulting in medical complications that still haunt the population today.
Today's Cuba is taking a new approach. At the last communist congress, two resolutions were proposed that are being considered by leadership:
1. Increase free enterprise
2. Allow travel out of the country for Cubans to work and accumulate wealth to bring back to the island.
These changes do not signal a change in fundamental ideology, as clearly explained during a political lesson we were given during out stay; rather, it reflects an understanding that the nation cannot survive without a change. The physical infrastructure, the glut of professionals without jobs in their fields, the lack of food and basic materials, etc., will not sustain the country. And behind all of it, is a continuing blame of the US for the "blockade" as the Cuban refer to the embargo. Even Cubans, though, are quick to add that their troubles result from more than just the embargo, and they support the new direction conceptually, although complain about the taxes that they must lay for private enterprise. Cuba's goal in promoting private business also has the ulterior motive of funding the government through taxation, a method thatbis universally applied in developed countries.
The Special Period is a euphemism for the time when the Soviet Union fell and Cuba lost Russian support. The population had not used Russian help to become self-sufficient so when Russia withdrew, 80% of Cuba's markets closed and the nation was a drop of 35% in GNP. Poverty and hunger were rampant, with malnutrition resulting in medical complications that still haunt the population today.
Today's Cuba is taking a new approach. At the last communist congress, two resolutions were proposed that are being considered by leadership:
1. Increase free enterprise
2. Allow travel out of the country for Cubans to work and accumulate wealth to bring back to the island.
These changes do not signal a change in fundamental ideology, as clearly explained during a political lesson we were given during out stay; rather, it reflects an understanding that the nation cannot survive without a change. The physical infrastructure, the glut of professionals without jobs in their fields, the lack of food and basic materials, etc., will not sustain the country. And behind all of it, is a continuing blame of the US for the "blockade" as the Cuban refer to the embargo. Even Cubans, though, are quick to add that their troubles result from more than just the embargo, and they support the new direction conceptually, although complain about the taxes that they must lay for private enterprise. Cuba's goal in promoting private business also has the ulterior motive of funding the government through taxation, a method thatbis universally applied in developed countries.
Medicine in Cuba
The Cuban health system has three levels:
-primary care
-hospitals
-institutes
Primary Care
Cuba boasts about 10,000 doctors. Primary care docs are the first lien of defense and are assigned geographically. A doctor lives in his neighborhood with about 120-150 families that are geographically contiguous. The doctor works with a nurse and has the primary function of disease prevention. They are charged with screening for DD. They can refer anyone to a policlinic where their patient can access up to 16 services (dental, psychology, psychiatry, etc.) to follow up on identified needs. These multidisciplinary teams act as access to other parts of the health system, or may resolve a problem completely.
Hospitals
Cuba has a national network of hospitals, such as maternity centers and others. This national network of hospitals reportedly provides care anywhere and are sites for training medical students, including interns and fellows from other countries (reportedly some for the US)
Institutes
Devoted to treatment and research, institutes focus on specific areas such as cardiology, ophthalmology, mental health, DD, etc.
One of our speakers added that Cuba's greatest health problem was the use of self-care which delays medical care. People use herbs and natural healing to the exclusion of formal medicine. Medical personnel encourage both, but do not support sole use of natural remedies.
-primary care
-hospitals
-institutes
Primary Care
Cuba boasts about 10,000 doctors. Primary care docs are the first lien of defense and are assigned geographically. A doctor lives in his neighborhood with about 120-150 families that are geographically contiguous. The doctor works with a nurse and has the primary function of disease prevention. They are charged with screening for DD. They can refer anyone to a policlinic where their patient can access up to 16 services (dental, psychology, psychiatry, etc.) to follow up on identified needs. These multidisciplinary teams act as access to other parts of the health system, or may resolve a problem completely.
Hospitals
Cuba has a national network of hospitals, such as maternity centers and others. This national network of hospitals reportedly provides care anywhere and are sites for training medical students, including interns and fellows from other countries (reportedly some for the US)
Institutes
Devoted to treatment and research, institutes focus on specific areas such as cardiology, ophthalmology, mental health, DD, etc.
One of our speakers added that Cuba's greatest health problem was the use of self-care which delays medical care. People use herbs and natural healing to the exclusion of formal medicine. Medical personnel encourage both, but do not support sole use of natural remedies.
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