Getting & Keeping People at the Table

Annie Alonso Amador, Psy.D.,MSWInstitute on Developmental Disabilities

Puerto Rico UCEDDUniversity Of Puerto Rico

aalonso@rcm.upr.edu

Puerto Rico

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.

Artists

José Feliciano, Feliz Navidad

Actors

JLO

Benicio del Toro

Raúl Juliá

Alex Rodríguez

Carlos Delgado

Iván Rodríguez Felix “Tito” Trinidad

Chichi Rodriguez

Athletes

Roberto Clemente

Science and Health Services

Dr. Nitza Margarita Cintron was named Chief of NASA's Johnson Space Center Space Medicine and Health Care Systems Office in 2004

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. 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. Mario R. García Palmieri

Distinguished Professor of MedicineDirector Section of CardiologyUniversity of Puerto Rico, School of Medicine

Divided into 78 municipalities, each of which elect a mayor and a municipal legislature.

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.

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 gene’s nucleus, is

inherited in equal parts from one’s father and mother. Mitochondrial DNA is inherited only from one’s 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).

• Nationality:Puerto 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”)

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.)

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

• Infant mortality rate: 8.24 deaths/1,000 live births.

• Life expectancy at birth:total population: 78.29 yearsmale: 74.35 yearsfemale: 82.43 years (2005 est.)

• Total fertility rate: 1.91 children born/woman (2005 est.)

Unemployment General Population: officials # 12%

• With a disability in general 16-64 y/o unemployment 72%

Male: 67.73%

Female: 72.3%

• 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.

General population 48

Below Poverty level : 48% General Population Population with disability 52%

Map shows per municipalities

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.

PR UCEDD- Many Tables

University Faculty

Community work

Consumer Public Policy Seminars and Round Tables

Challenge to Reaching Out

• Trust

• Families and consumers lack the natural and government agencies support.

• Need to survive day-to-day.

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.

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.

PRUCEDD Advisory Committee

Gracias!!!Thank you!!!

Audience

• What challenges your Center have to getting and keeping people to the table?

• How your UCEDD have reached different audience representing that diversity?