Getting & Keeping People at the Table

1. Getting & Keeping People at the Table Annie Alonso Amador, Psy.D.,MSW Institute on Developmental Disabilities Puerto Rico UCEDD University Of Puerto Rico aalonso@rcm.upr.edu

2. Puerto Rico

4. 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.

5. Artists José Feliciano, Feliz Navidad

6. Actors Benicio del Toro JLO Raúl Juliá

7. Athletes Carlos Delgado Roberto Clemente Chichi Rodriguez Alex Rodríguez Iván Rodríguez Felix “Tito” Trinidad

8. Science and Health Services

9. 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

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

11. 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 bicameralLegislative 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.

12. 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).

13. 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”)

14. 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.)

15. 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

16. 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.)

17. Unemployment General Population: officials # 12% • With a disability in general 16-64 y/o unemployment 72% Male: 67.73% Female: 72.3%

18. 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 Ricannews media has been Dominicanimmigration 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.

19. Below Poverty level : 48% General Population Population with disability 52% Map shows per municipalities General population 48

20. 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.

21. PR UCEDD- Many Tables Community work University Faculty Consumer Public Policy Seminars and Round Tables

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

23. 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.

24. 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.

25. PRUCEDD Advisory Committee

30. Gracias!!!Thank you!!!

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