Thursday, October 20, 2011

October 20, 2011

Our morning begins with a tour of a rehabilitation clinic for children (day therapeutic program for children with mobility impairments in addition to ID).  The clinic provides traditional therapies (PT, OT, speech, hydro) plus herbal and complimentary interventions.  The afternoon is spent at a day program for adults with Down syndrome run by parents out of a church with some support by the Sisters of Charity of St. Vincent de Paul convent.  This program is truly a labor of love by the parents.  Between these site visits, while walking through old Havana, I have the opportunity to see an herbalist shop.  I couldn't get in to look around as the shop was full and the line was out the door.  Herbal remedies are very, very popular, along with complementary interventions, for all health issues.            

Wednesday, October 19, 2011

October 19, 2011

Today we visited another psycho pedagogical center (adult institution) that was established in 1963 as Cuba's first formal intervention for people with ID. We hear that by the late 60's the facility had embraced a paradigm shift away from custodial care and toward optimizing the capacity of it's participants, and today the facility reports a 'deinstitutionalization' (discharge to family home) rate of 63%.  A Cuban TV crew documents our visit and interviews several members of the delegation.  I was pleased to be interviewed with the hope of increasing visibility of the needs of people with ID and the importance of the work of the people who work for and with the population.  The afternoon was spent with a most prestigious psychiatrist and author of 10 books (#11 will be published in 2013 when she will be 85) who graduated from medial school in 1956.  She provided great insights on the lives of the people before, during, and after the revolution and the immense cultural shifts in viewing gender, disability, and community in Cuba.  Her dialogue with our group was absolutely fascinating.  A continual theme in all our our interactions are the cultural expectations of the role of mothers.  Cuban mothers are purported to be selfless in their devotion to their children and, for children with disabilities. Family support is primarily maternal support, and often consisting of anti depressants, support groups, parent training, and nutritional supports.        

October 18, 2011

his day brings us into our first contact with direct services for people with ID.  There is an education and health care campus in Havana with multiple service buildings. Within this Cuidad Escolar Libertad is a school for children with autism (the majority of which have ID).  The similarities with US practices are apparent: individualized supports, passionate staff, and IEP-like team meetings (but 3 times a year). The differences are also striking.  Tangible resources are extremely limited: electricity is intermittent, there are no electronic devices or computers, and paper is extremely hard to come by.  We also spend time at an adult institution (psycho pedagogical center), and allowing for resource limitations and firm medical model, the intervention structure is fairly similar to what you might see in the US.  The approach overall is clearly Cuban: therapies rely heavily on herbal and complimentary strategies, sexuality is openly embraced, and families of residents who the staff identify as 'disfunctional' are targeted for (possibly lifelong) government-provided intervention.  There was also a 2:1 gender ratio of males to females in this facility.  Martin, a Cuban hero, has a quote that is particularly relevant to ID:  while there is work to be done, no man has the right to rest

Monday, October 17, 2011

October 17, 2011

Our first full day in Cuba begins with strong and very sweet Cuban coffee.  The morning is filled with a contextual panel presentation by 3 leaders in the disability field in Cuba: a physician who provides an overview of the public health system; a psychiatrist who addresses screening and intervention, and an educator who describes the education system.  The Cuban approach to public health described today appears to rest heavily on prevention; speakers acknowledged that the population's heavy alcohol and tobacco use are serious public health issues in the country. The afternoon contains a presentation by a representative from the "institute for friendship with the people" extolling Cuba's Latin American School of Medicine, which provides  medical training to people from developing countries. On a walking tour of old Havana we stop for a mojito in a a very lovely place frequented by Hemingway.  (As we stopped in a whole in the wall place last night that was also frequently visited by Hemingway, I begin to suspect that he frequented many places in Havana.)

October 16, 2011

Havana is a 45 flight from Miami.  the buildings are a mix of art deco, 50's moderne, an soviet industrial.  There are images of Che everywhere.  We arrive at an orientation meeting at the hotel, greeted with small glasses of rum and coke.  We are reminded that we cannot bring rum, coffee, or cigars back to the US. The delegation splits up to have lunch 'on own.'. I tag along with a group the se ts out on a 45 minute walk to old Havana to eat lunch at the El Nationale Hotel de Cuba, built in 1930 and home to a Hall of Fame that recognizes celebrities, musicians, and politcos that have visited or contributed to Cuba.  After lunch delegation members contribute to the gift bags that will be presented to each of the groups we will be meeting with.  The bags are filled with professional resources.  The day closes with dinner at El Patio (state owned) on the Plaza del Cathedral.  Although it's a Sunday raining, dozens of small privately owned restaurants are open and music is everywhere.  Tucked into every corner you find a band playing to an enthusiastic audience.

Tuesday, October 11, 2011

October 11, 2011

Less than one week to go before our delegation of 24 AAIDD members leave for Cuba!
The delegates hail from across the US and bring an exciting mix of professional interests and experience.
ATA has arranged for meetings/visits in 9 locations in and around Havana where we will exchange information with professionals, self-advocates, and families.
My visa (which is written in English, Spanish, French, and German to cover all bases) has arrived and I'm ready to go!