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.
Wednesday, October 19, 2011
Wednesday--It's Starting to Come Together
We had a moving and fun morning at the Centro Medico Psicopedagógico Castellano, also known as La Castellana, where we began to see the Cuban philosophy of inclusion. What began as a segregated institution for 135 children in 1959 underwent a profound paradigm shift after the revolution to emphasize community inclusion, day program, and minimizing institutionalization. It's becoming clearer to us that the family and extended family in the form of community, are very much at the heart of the Cuban system for IDD services. We also saw more paper mâché put to ingenious uses to create amazing crafts, true works of art. These people, with very limited materials, take steps such as planting gourds to make maracas and gathering fallen palm fronds to make straw hats. And they danced, beautiful interpretive dance. The next step that was explained to us by the director, Dra. Emeridad Icart, is to find housing for people who are left without family and houses for married couples with IDD. The concept of group homes is developing out of the burgeoning need for options when caregivers pass, but housing is a disaster in Cuba. Options may be financially impossible to create until something happens to revive the economy.
After lunch at La Torre, a restaurant on the 33 re floor of a building with a panoramic view of Habana (wow, amazing, breathtaking...there aren't enough words to describe the view) we were treated to a unique honor, a visit with Dra. Elsa Gutierrez-Barro, premier author and expert in IDD. At age 83, this tireless fireball explained the role of special schools, called institutions in Cuba, as part of the continuum of care. Unlike the stigma associated with special schools and institutions, Cuba's special ed students are simply attending another schools. In all other aspects of social and community life, they're integrated. In that context, we all found ourselves reflecting on the influence, and the importance of understanding, culture in how we develop supports. Dra. Elsa has written ten books and is working on an eleventh. I hope that she makes it to 100 years of age. She has so much to share.
After lunch at La Torre, a restaurant on the 33 re floor of a building with a panoramic view of Habana (wow, amazing, breathtaking...there aren't enough words to describe the view) we were treated to a unique honor, a visit with Dra. Elsa Gutierrez-Barro, premier author and expert in IDD. At age 83, this tireless fireball explained the role of special schools, called institutions in Cuba, as part of the continuum of care. Unlike the stigma associated with special schools and institutions, Cuba's special ed students are simply attending another schools. In all other aspects of social and community life, they're integrated. In that context, we all found ourselves reflecting on the influence, and the importance of understanding, culture in how we develop supports. Dra. Elsa has written ten books and is working on an eleventh. I hope that she makes it to 100 years of age. She has so much to share.
Tuesday...More to Learn
Tuesday...another day of lessons about a different perspective with many familiar aspects. We started the morning at Ciudad Libertad Escolar, also known as Colombia, Batista's old military base and focal point of drug trafficking in pre-revolutionary Cuba. Now, it's a complex of academic buildings including the Dora Alonso school for children with autism. The principal, Dra. Laudel Cruz Camejo, and psychologist, Elsa Escalona Basulto, told us of the 46 children ages 2-18 at the school. Twelve teachers, twelve aides and twelve specialists (therapists) provide training geared toward the transition and integration of children into regular education as much as possible. Two transitional teachers follow children into mainstream placements to promote success. Sixty students have transitioned through this process.
Repeatedly, we heard the importance of early intervention and parent training, but after the talking, the best part was seeing real kids in real classrooms. I was reminded of the universality of ID and autism. I could have sat down and continued any lesson (they use ABA as a template, although defied for each child and aversives and corporal punishment are prohibited). It was heartwarming and reassuringly familiar.
After lunch with a great salsa trio, we headed to Benjamín Moreno, where Dra. Aida Hernandez explained their residential and day programs. Their philosophy focuses on integration and family training and participation, recurrent themes during our visits. In this country with so many needs, families are integral to care. And so are art and dancing. We were moved and delighted by performers who imitated the Sapphires, or Los Safiros, and then rocked the place with dancing that showed true Cuban spirit. It made me want to dance!
We ended the day at the market in Old Habana, buying objects of art and literature. Another full day.
Repeatedly, we heard the importance of early intervention and parent training, but after the talking, the best part was seeing real kids in real classrooms. I was reminded of the universality of ID and autism. I could have sat down and continued any lesson (they use ABA as a template, although defied for each child and aversives and corporal punishment are prohibited). It was heartwarming and reassuringly familiar.
After lunch with a great salsa trio, we headed to Benjamín Moreno, where Dra. Aida Hernandez explained their residential and day programs. Their philosophy focuses on integration and family training and participation, recurrent themes during our visits. In this country with so many needs, families are integral to care. And so are art and dancing. We were moved and delighted by performers who imitated the Sapphires, or Los Safiros, and then rocked the place with dancing that showed true Cuban spirit. It made me want to dance!
We ended the day at the market in Old Habana, buying objects of art and literature. Another full day.
Monday, October 17, 2011
Monday in Cuba - Day One
A very educational and fun day! We began with a panel discussion at La Casa de la Amistad (The Friendship House) with three experts on IDD, Dr. Cristóbal Martínez, Dra. Ovidia Rodriguez, and Dra. Sonia Guerra Iglesias.
Here is what I learned:
Dr. Cristóbal - He explained the philosophy of Cuban medical services: prevention first! Risks factors are focused on 3 areas, prenatal, pregnancy and postnatal. All pregnant women are expected (required?) to get medical care and are counseled on no smoking or drinking during pregnancy. This care is managed by the primary physician, a neighborhood doctor to which 120 - 150 neighborhood families are assigned. Those family docs also are the front line of defense for identifying DD very early. The primary has teams of colleagues to whom s/he can refer. Interesting fact: medical school is free, but paper is so expensive that textbook aren't sold so that they don't run out for students. Cuba has 204 child psychiatrists for a population of 11 million, and all physicians are routinely educated in DD. Maternity leave is a year, fully paid and breastfeeding only (including no water to drink) is urged for the first 6 months.
Dr. Ovidia, autism expert - autism assessment and diagnosis follow the same criteria in the U.S. As for causes, the vaccine matter is a non-issue in Cuba. On the other hand, intestinal permeability and candidia are considered major concerns. Gluten and casein-free diets are often prescribed and red meat is eliminated to avoid the build up of purines. Anti-convulsants are used routinely with or without a positive EEG. For behavior severe behavior problems, a small amount of Haldol or Risperidol may be used.But most notably, Dr. Ovidia hypothesizes that the fast rise in autism may be influenced by TV watching and the effects of electromagnetic waves from TV. She was passionate about this position. I would be interesting to see if she has some research to support her suspicions.
Dr. Sonia - had little time left, but graced us with a little preview of tomorrow's school visits, and gave us perhaps the best quote of the day, special education is a labor of love, based in science. She also stated that he incidence of IDD in Cuba is 1.25%, and philosophically the approach to sexuality in people with IDD is that they grow up, love and live as adults, so nothing should limit their sexual expression. Very progressive.
Our afternoon started in ICAP, the Cuban Institute of Friendship with the People and was an educational session of Cuba's view of the embargo--political, but informational. We learned Cuba's position on the Cuban Five, heard Danny Glover and the Rev. Lucius Walker, explaining Cuba's offer to educate Anglo medical students for free, in exchange for their service in under-served areas in the U.S. Interesting concept with curious political complexities. We heard that Cuba is beginning to encourage free enterprise and even may look at travel out of the country for citizens who can make money to bring back to the island. More complexities which left us wondering how opening those doors would change Cuba. How can the current government philosophy survive with such openness and a taste of good life???
Ahh...then we went to Old Habana, a heartbreakingly beautiful area, rich with history and crumbling everywhere. Restorations are underway but with limited materials, the job looks impossible. History, Hemmingway, flowers, art, El Malecon, so much in one day, and so much ahead.
Here is what I learned:
Dr. Cristóbal - He explained the philosophy of Cuban medical services: prevention first! Risks factors are focused on 3 areas, prenatal, pregnancy and postnatal. All pregnant women are expected (required?) to get medical care and are counseled on no smoking or drinking during pregnancy. This care is managed by the primary physician, a neighborhood doctor to which 120 - 150 neighborhood families are assigned. Those family docs also are the front line of defense for identifying DD very early. The primary has teams of colleagues to whom s/he can refer. Interesting fact: medical school is free, but paper is so expensive that textbook aren't sold so that they don't run out for students. Cuba has 204 child psychiatrists for a population of 11 million, and all physicians are routinely educated in DD. Maternity leave is a year, fully paid and breastfeeding only (including no water to drink) is urged for the first 6 months.
Dr. Ovidia, autism expert - autism assessment and diagnosis follow the same criteria in the U.S. As for causes, the vaccine matter is a non-issue in Cuba. On the other hand, intestinal permeability and candidia are considered major concerns. Gluten and casein-free diets are often prescribed and red meat is eliminated to avoid the build up of purines. Anti-convulsants are used routinely with or without a positive EEG. For behavior severe behavior problems, a small amount of Haldol or Risperidol may be used.But most notably, Dr. Ovidia hypothesizes that the fast rise in autism may be influenced by TV watching and the effects of electromagnetic waves from TV. She was passionate about this position. I would be interesting to see if she has some research to support her suspicions.
Dr. Sonia - had little time left, but graced us with a little preview of tomorrow's school visits, and gave us perhaps the best quote of the day, special education is a labor of love, based in science. She also stated that he incidence of IDD in Cuba is 1.25%, and philosophically the approach to sexuality in people with IDD is that they grow up, love and live as adults, so nothing should limit their sexual expression. Very progressive.
Our afternoon started in ICAP, the Cuban Institute of Friendship with the People and was an educational session of Cuba's view of the embargo--political, but informational. We learned Cuba's position on the Cuban Five, heard Danny Glover and the Rev. Lucius Walker, explaining Cuba's offer to educate Anglo medical students for free, in exchange for their service in under-served areas in the U.S. Interesting concept with curious political complexities. We heard that Cuba is beginning to encourage free enterprise and even may look at travel out of the country for citizens who can make money to bring back to the island. More complexities which left us wondering how opening those doors would change Cuba. How can the current government philosophy survive with such openness and a taste of good life???
Ahh...then we went to Old Habana, a heartbreakingly beautiful area, rich with history and crumbling everywhere. Restorations are underway but with limited materials, the job looks impossible. History, Hemmingway, flowers, art, El Malecon, so much in one day, and so much ahead.
Sunday, October 16, 2011
We're Here!
It's been an amazing day. I'm dazed, still thinking that I'll wake up and it will all have been a dream. Let me start at the beginning.
The flight was smooth. When we approached Cuba, I could see the island so clearly, choppy waters all around, lots of forests and small towns with buildings in various stages of disrepair. I sat next to the mechanic that flies with the plane to do small repairs as needed, a fellow from Peru who said he'd never seen so many Anglos in one plane. There were two groups, ours and a group of attorneys from the same Professionals Abroad sponsor.
When we landed, we went through customs and immigration, and I was asked when I entered the country, twice, and they asked me if I was 3 when I arrived, which I corrected...no, I was 5. They went through checked luggage, but everything turned out to be there when I got to the room. It resulted in a delay for our bags, but we had time to observe the drug sniffing dogs that wandered through the luggage, oblivious to passengers, just checking bags. Beautiful springer spaniels.
At the final point, I exchanged the euros and spotted my cousins outside at the fences, waving madly. The reunion was too emotional for words, but not for tears. They had talked to our guide who pulled me aside and said that he would slow things down and let them come to the bus with us until we boarded. As the other group members saw the scene, everyone pulled out cameras and recorded the moment. Good thing, because the family was hugging and I couldn't even find my camera in my bags. We visited, hugged, and the group went to the hotel for orientation, followed by time on our own. I took advantage of the free time to call the family and they came to pick me up. I spent the afternoon with them, had lunch at their home, and then walked around my old neighborhood. Marta walked to the house where I was born and explained to the family who I was, and they let me in with hugs and kisses, and I walked straight to my old bedroom. It moves me as I write this. I was in my first home, 50 years after leaving it. We then went to the home of other friends with whom my parents left our furniture and, yes, they have the couch from my old home. We laughed as I told them that they were welcome to keep it. ;)
We returned to the hotel in Ernesto's old car, the taxi that he sacrificed to drive us around, and I had time to freshen up, bring items for goodie bags (we'll have fantastic bags for our hosts--my colleagues are very generous and creative when it comes to gifts). We capped off the night at an outdoor restaurant in Old Habana, then stopped off at Hemingway's hangout, a delightful bar with a live group that was playing some of my favorite salsa. One more bus trip to the hotel, and it's time to rest...finally. The day began very early with a 4am wake up call, so it's time for bed. Or maybe one more mojito...
The flight was smooth. When we approached Cuba, I could see the island so clearly, choppy waters all around, lots of forests and small towns with buildings in various stages of disrepair. I sat next to the mechanic that flies with the plane to do small repairs as needed, a fellow from Peru who said he'd never seen so many Anglos in one plane. There were two groups, ours and a group of attorneys from the same Professionals Abroad sponsor.
When we landed, we went through customs and immigration, and I was asked when I entered the country, twice, and they asked me if I was 3 when I arrived, which I corrected...no, I was 5. They went through checked luggage, but everything turned out to be there when I got to the room. It resulted in a delay for our bags, but we had time to observe the drug sniffing dogs that wandered through the luggage, oblivious to passengers, just checking bags. Beautiful springer spaniels.
At the final point, I exchanged the euros and spotted my cousins outside at the fences, waving madly. The reunion was too emotional for words, but not for tears. They had talked to our guide who pulled me aside and said that he would slow things down and let them come to the bus with us until we boarded. As the other group members saw the scene, everyone pulled out cameras and recorded the moment. Good thing, because the family was hugging and I couldn't even find my camera in my bags. We visited, hugged, and the group went to the hotel for orientation, followed by time on our own. I took advantage of the free time to call the family and they came to pick me up. I spent the afternoon with them, had lunch at their home, and then walked around my old neighborhood. Marta walked to the house where I was born and explained to the family who I was, and they let me in with hugs and kisses, and I walked straight to my old bedroom. It moves me as I write this. I was in my first home, 50 years after leaving it. We then went to the home of other friends with whom my parents left our furniture and, yes, they have the couch from my old home. We laughed as I told them that they were welcome to keep it. ;)
We returned to the hotel in Ernesto's old car, the taxi that he sacrificed to drive us around, and I had time to freshen up, bring items for goodie bags (we'll have fantastic bags for our hosts--my colleagues are very generous and creative when it comes to gifts). We capped off the night at an outdoor restaurant in Old Habana, then stopped off at Hemingway's hangout, a delightful bar with a live group that was playing some of my favorite salsa. One more bus trip to the hotel, and it's time to rest...finally. The day began very early with a 4am wake up call, so it's time for bed. Or maybe one more mojito...
Waiting to Board
We're on our way! I don't know how many of us are on the final roster, but all of the people whom I met yesterday and more this morning, very, very early this morning, are fascinating professionals with a passion for people with developmental disabilities. I can already see that I'll learn as much from them as I will from our colleagues in Cuba.
Most of us also share the excited apprehension of going to a country with so much unknown and with so many myths. We remind ourselves that tourists from all countries go to Cuba every day, and we will blend in--well, except for being in a big group; but even that will be common. Just another tour group, but with a mission to learn. Boarding soon...
Most of us also share the excited apprehension of going to a country with so much unknown and with so many myths. We remind ourselves that tourists from all countries go to Cuba every day, and we will blend in--well, except for being in a big group; but even that will be common. Just another tour group, but with a mission to learn. Boarding soon...
Thursday, October 13, 2011
Two Days Away...
We're almost there. Twenty two delegates, including our Delegation Leader, Dr. Maggie Nygren, Executive Director of AAIDD, have been exchanging online intros and creating a community. The delegates represent 11 states and a broad range of IDD-related professions and interests.
Our agenda is packed with unique activities--of course, the whole trip is unique! Some high points:
Sunday - Orientation, then dinner in Old Havana's Cathedral Square
Monday - Panel presentation/Overview of research, meting with representatives of the North American Division of the Cuban Institute for Friendship with the Peoples, Walking tour of Old Havana
Tuesday - Visit to Ciudad Escolar Libertad, an educational complex, the Dora Alonso School for Autistic Children, and the Benjamin Moreno Medical Psycho-Pedagogical Center
Wednesday - Visit La Castellana Psyhco-Pedagogical Center, meeting with Dr. Ela Gutierrez-Barro, one of Cuba's foremost experts in IDD
Thursday - Visit Zenen Casas Rehabilitation Clinic, a community project for people with Down syndrome, and our farewell dinner
Friday - Wrap up!
Much to see and learn!
Our agenda is packed with unique activities--of course, the whole trip is unique! Some high points:
Sunday - Orientation, then dinner in Old Havana's Cathedral Square
Monday - Panel presentation/Overview of research, meting with representatives of the North American Division of the Cuban Institute for Friendship with the Peoples, Walking tour of Old Havana
Tuesday - Visit to Ciudad Escolar Libertad, an educational complex, the Dora Alonso School for Autistic Children, and the Benjamin Moreno Medical Psycho-Pedagogical Center
Wednesday - Visit La Castellana Psyhco-Pedagogical Center, meeting with Dr. Ela Gutierrez-Barro, one of Cuba's foremost experts in IDD
Thursday - Visit Zenen Casas Rehabilitation Clinic, a community project for people with Down syndrome, and our farewell dinner
Friday - Wrap up!
Much to see and learn!
Tuesday, October 4, 2011
12 Days and Counting...
The visa arrived today, so we're on our way. I've been doing reading and getting ready, and have found some intersting information. One detail centers around the reported incidence of IDD on the island. Here's what I found (and wrote for a paper as part of faculty training):
Cuba is an island nation where the leadership takes pride in providing medical care and education to everyone, regardless of age, race or cognitive level (Brice 2008,). However, although the universality of medical care and education in Cuba is not in question, reports and impressions differ about the prevalence of Intellectual and Developmental Disability vary substantially.
Lantigua Cruz, A., Lemus Valdes, M. T., & Marcheco Teruel, B. (2007). Medical genetic
services in Cuba. Revista Cubana de Genetica Comunitaria, 1( 1), 5-9.
Brice, A. E. (2008). Comparative Policy Brief: status of intellectual disabilities in the
Republic of Cuba. Journal of Policy and Practice in Intellectual Disabilities, 5( 2),
118-121.
Cuba is an island nation where the leadership takes pride in providing medical care and education to everyone, regardless of age, race or cognitive level (Brice 2008,). However, although the universality of medical care and education in Cuba is not in question, reports and impressions differ about the prevalence of Intellectual and Developmental Disability vary substantially.
In 2007, Lantigua Cruz, Lemus Valdes, and Marcheco Teruel described the work and findings of the Cuban Medical Genetics Network, the lead body charged with the prevention of genetic disorders on the island. A key activity was the identification of all inhabitants with a developmental disorder, which led to the detection of mental retardation in 1.25% of the population. Since every person in Cuba is connected to medical care, the report concluded that all cases of mental retardation had been identified.
The work of Brice (2008) stands in contrast with this conclusion. Brice questions the reported prevalence of IDD by Cuban sources as an underestimate, and applies the 2-3% figure commonly used in international clinical literature. He adds that limited quality of protein and calories in children's diets, combined with less access to medication and stress of economic problems, create conditions that are ripe for more, not less, cognitive delays.
Both articles acknowledge the presence of IDD in Cuba, and both must be interpreted with caution. Brice (2008) correctly asserts that Cuba has prevented access to their records by international scientists who could confirm or dispute the findings. However, Brice's conclusions are speculative and rely on hypothetical extrapolations that may not apply to an island with a genetic pool that has remained stable over many years because travel has been highly restricted. Lantigua Cruz, Lemus Valdes, and Marcheco Teruel (2007) address the limited genetic diversity, and note the exportation of disabled individuals en mass during the brief 1980 Cuban exodus to the U.S., when a number of Cubans with disabilities left Cuba, thereby further reducing the potential genetic pool with disabilities in the island. Nevertheless, the Cuban prevalence figures must also be interpreted with caution, since the government vets all scientific work and has the power to impact what is ultimately published.
In summary, Cuba may be a location where mental retardation is lower than in other countries. If this is true, it affords an extraordinary opportunity to examine the nature/nurture question, since Cuba is, undeniably, a country of limited resources for its citizens. An accurate assessment of the prevalence of IDD, however, may have to wait until the leadership of the island and of other countries reach amicable agreements that allow doors to fully open for researchers in this field.
References
services in Cuba. Revista Cubana de Genetica Comunitaria, 1( 1), 5-9.
Brice, A. E. (2008). Comparative Policy Brief: status of intellectual disabilities in the
Republic of Cuba. Journal of Policy and Practice in Intellectual Disabilities, 5( 2),
118-121.
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