Getting

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Getting Keeping People at the Table

• Annie Alonso Amador, Psy.D.,MSW
• Institute on Developmental Disabilities
• Puerto Rico UCEDD
• University Of Puerto Rico
• aalonso_at_rcm.upr.edu

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Puerto Rico
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• The Commonwealth of Puerto Rico (Spanish Estado
  Libre Asociado de Puerto Rico) is
• a territory of the United States
• located east of the Dominican Republic in the
  northeastern Caribbean.
• the smallest of the Greater Antilles,
• includes the main island of Puerto Rico and a
  number of smaller islands and keys, including the
  populated island-municipalities of Vieques and
  Culebra,
• The big island is 100 long by 35 wide miles.

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Artists

José Feliciano, Feliz Navidad
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Actors
Benicio del Toro
JLO
Raúl Juliá
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Athletes
Carlos Delgado
Roberto Clemente
Chichi Rodriguez
Alex Rodríguez
Iván Rodríguez
Felix Tito Trinidad
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Science and Health Services
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Dr. Nitza Margarita Cintron was named Chief of
NASA's Johnson Space Center Space Medicine and
Health Care Systems Office in 2004
Dr. José F. Cordero is a former Assistant Surgeon
General of the Public Health Service and recently
retired Director of the National Center on Birth
Defects (NCBDDD) and Developmental Disabilities
at the U.S. Centers for Disease Control and
Prevention (CDC) in Atlanta. A pediatrician with
27 years of experience at CDC and extensive
public health expertise in the fields of birth
defects, developmental disabilities, infant and
child health, immunizations, and efforts to
promote the health of children and adults with
disabilities throughout the lifespan.
Dr.Antonia Coello de Novello, Former Surgeon
General of the Public Health Services in United
State Actual Health Commissioner in New York
Medicine Hall of Fame
Dr. Mario R. García Palmieri Distinguished
Professor of MedicineDirector Section of
CardiologyUniversity of Puerto Rico, School of
Medicine
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Divided into 78 municipalities, each of which
elect a mayor and a municipal legislature.
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Government

• The government of Puerto Rico
• Based on the Republican system composed of 3
  branches the Executive branch headed by the
  Governor, the Legislative branch consisting of a
  bicameral Legislative Assembly (a Senate and a
  House of Representatives) and the Judicial
  branch.
• The governor as well as legislators are elected
  by popular vote every four years.
• Members of the Judicial branch are appointed by
  the governor and approved by the senate.

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What is a Puerto Rican?

• Dr. Juan Martinez Cruzado, a geneticist from
  the University of Puerto Rico Mayagüez Campus
  ,designed an island-wide DNA survey, has just
  released the final numbers and analysis of the
  project.According to Dr. Martínez research,
  founded by the U.S. National Science
• Foundation
• 61 percent of all Puerto Ricans have Amerindian
  mitochondrial DNA,
• 27 percent have African
• 12 percent Caucasian.
• (Nuclear DNA, or the genetic material present
  in a genes nucleus, is inherited in equal parts
  from ones father and mother. Mitochondrial DNA
  is inherited only from ones mother and does not
  change or blend with other materials over time.)
• In other words a large number of Puerto Ricans
  have Native blood
• (taino blood).

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• NationalityPuerto Ricans were granted U.S.
  citizenship in 1917 and allowed to move to the
  mainland without restriction.
• noun Puerto Rican(s)
• adjective Puerto Rican ( also Boricuas)

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Puerto Rico Demographic Profile

• Age structure
• 0-14 years 22
• 15-64 years 65.5
• 65 years and over 12.4
• Birth rate 13.93 births/1,000 population (2005
  est.)
• Death rate 7.86 deaths/1,000 population (2005
  est.)
• Net migration rate -1.38 migrant(s)/1,000
  population (2005 est.)

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Puerto Rico Demographics Profile

• Total Population 3,808,610
• Rural 213,089 Urban 3,595,521
• Females 51.9
• Males 48.1
• With any disability (Non institutionalized 5
  years and over) 26.8
• Females 49.3
• Males 50.7
• Number of children in special ed. 92,795

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• Infant mortality rate 8.24 deaths/1,000 live
  births.
• Life expectancy at birthtotal population 78.29
  yearsmale 74.35 yearsfemale 82.43 years (2005
  est.)
• Total fertility rate 1.91 children born/woman
  (2005 est.)

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• Unemployment General Population officials
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• With a disability in general 16-64 y/o
  unemployment 72
• Male 67.73
• Female 72.3

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• Immigrants from Cuba, the Dominican Republic,
  Colombia and Venezuela, have also settled, but
  together they represent less than 5 of the
  population.
• Of those 1.5 are Dominican.
• During the 2000s, one of the most recurrent
  themes in Puerto Rican news media has been
  Dominican immigration to Puerto Rico. There are
  believed to be between 100,000 and 150,000
  illegal Dominican immigrants living in Puerto
  Rico as of 2007.
• In Puerto Rico live 2.5 mainland Americans.

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Below Poverty level 48 General Population
Population with disability 52 Map shows
per municipalities
General population 48
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Important Cultural Values

• Familysm Emphasis in the interdependece and
  support between extended family members.
• Other family are consulted for advise about
  therapy and medication recommendations.
• Sympathy behaviors that promote good
  relationships and refrain from conflict are very
  important. Providers may think parents agree
  with recommendations but that does not mean they
  will comply with them at home.
• Personalism maintain relationships with the
  persons in the program, not with the program or a
  service provider role.
• Sense of time More relaxed or flexible approach
  towards time. It is more a sequence of events
  than a specific moment.

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PR UCEDD- Many Tables
Community work
University Faculty
Consumer Public Policy Seminars and Round
Tables
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Challenge to Reaching Out

• Trust
• Families and consumers lack the natural and
  government agencies support.
• Need to survive day-to-day.

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Effective Strategies

• Responsiveness Being available for support.
• Developing relationships.
• Show commitment and accountability(follow up).
• Partnerships with other leaders identified by the
  consumers .
• Diversity in staff.
• Control staff turnover.
• In the encounters address the task and also
  group maintenance activities.

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Who are our CAC Members

• Families and consumers who participate in the
  Institute projects and activities.
• Partners in public policy activities as self
  advocates or as advocates.
• Services providers.

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PRUCEDD Advisory Committee
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Gracias!!!Thank you!!!
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Audience

• What challenges your Center have to getting and
  keeping people to the table?
• How your UCEDD have reached different audience
  representing that diversity?