Puerto Rico

Annie Alonso Amador, Psy.D. ,MSW Myrna L. Quiñones, MD

Institute on Developmental Disabilities PR-UCEDD Great Lakes Collaboration

Focus on Autism October 4, 2012

Geography

• Puerto Rico is the smallest of the Greater Antilles. • Puerto Rico is an archipelago. The main island is

Puerto Rico and two smaller islands which are populated (Vieques and Culebra). There are other small keys or islets that are not populated around the main island. The main Island is mainly mountains. We have two mountain ranges.

• Located between the Caribbean Sea and the Atlantic Ocean

• To the west we have the Dominican Republic • To the south-east we have the Smaller Antilles

State Plan Highlights

• To know how many children with autism we have in Puerto Rico.

• Support a registry of children with autism. • To work with the Administration of Health Insurance of the

Government of Puerto Rico to included autism as a preexisting cover in the “ Mi Salud” Plan.

• Advocate for the completion of the bill for the creation of interagency policy for ASD (Department of Health, Education, Administration of Child Care and Development (ACUDEN), and others).

• Continue the development of pre-service and in-service training for teachers, therapists, and health care providers.

Partners • Department of Health • PR First Lady Office • ASESS (Administration of Health Services) • PR Autism Alliance • Autism Puerto Rican Foundation • Institute on Developmental Disabilities – PRUCEDD • Community-based organizations (e.g. private providers) • Center for Autism (Ponce) • ACUDEN Child care providers & HS Programs • Title V Children with Special Health Care Needs • University of Puerto Rico: Institutes and academic

programs. • Department of Education.

Accomplishments

• Prevalence Study: Report 1/62 children with autism ( 2011).

• Autism Center : Service , Training and Research. Start services April 2012 as a UCEDD training site.

• Autism Public Policy PR Public Law 220, September 4, 2012.

Challenges

• Primary care physician training (special health

coverage). • Service providers training about best practices

in diagnosis and intervention. • Services through adulthood. • Access to community based services. • Data collection system.

Next Steps

• Establish a surveillance system. • Implementation of the new public policy bill. • Research about culturally appropriated

intervention practices. • Continue training to service providers. • Continue evaluation of health services

utilization for the population with autism (public and private insurance).

Demographics • According to the 2010 Census the population of Puerto

Rico is 3,725,789. • An estimated 20.6 % of the population has a disability

and is not institutionalized. (2009) – Ages 18 or less – 7% – Ages 18-64 - 18.1% – Ages 65+ - 55.2%

• Services to the DD population in the central part of the Island is very limited, compared to the services in the coastal areas, where the main cities are located.

• The estimate of people with disabilities in Puerto Rico is 20% (American Community Survey).

• Autism prevalence 1/62. Considering all ages PR have 28,745 persons with autism.

1.5%

1.7%

1.4% 1.0%

1.8%

2.3% 1.0%

1.9%

San Juan

PR Regions and Autism prevalence

Economics

• Traditionally Puerto Rico has been considered the poorest jurisdiction of the United States

• One fourth of the population lives in poverty. • 50% of the population is over 65 years old. • Women comprise 52% of the population (US Census

2010) • The poverty level of people with disabilities is higher

than the population without a disability. (2009) – 41.6% versus 39.3% under the poverty level – 17.2% versus 16.7% on poverty level

Annual income :families with children with autism

38

29

18

5 8

16

0

5

10

15

20

25

30

35

40

<10,000 10,000-19,999 20,000-29,999 30,000-39,999 40,000-49,999 50,000+

PR Autism Prevalence Study 2011

Statistical Data on Education • Part C serves 5,204 children 0 to 3 yrs. • Department of Education serves 13,952 children 3 to 5 yrs. • Special Education Program serves 126,560 children from 6

to 21 yrs. • 49% of people with disabilities do not have a high school

diploma compared to 30 % of the non-disabled population • Only 1,813 students with disabilities graduate from high

school a year (2009) • There are 5,097 qualified special education teachers for the

population of 6 to 21 yrs. • 2008-2009: 1,534 Latest report for children with autism

served by Part B in PR .

IEP: Children with autism

20

80

No Sí

PR Autism Prevalence Study 2011,

Health • 93% of the population with disabilities has some type of health

insurance. 96% of the population without a disability has health insurance. There are some capitation issues related to medical referrals to specialists.

• Puerto Rico has a Medicaid cap. Funding is approximately 20% of what a state normally receives according to its population.

• We do not have Medicaid waivers. The only state program we have is very limited and it is administered by the Department of the Family and includes the elderly and only includes part-time day care if the person is bed-ridden.

• The government’s health insurance revised the coverage to include pre-existing conditions specially children with autism.

Transportation

• Accessible public transportation is very limited, making employment , recreation and in general, quality of life, very difficult to achieve for the population. The only para-transit system that exists is located in the San Juan Metropolitan Area (8 municipalities) with a fleet of 50 accessible buses.

Key Partners • Department of Health • PR First Lady Office • ASESS (Administration of Health Services) • PR Autism Alliance • Autism Puerto Rican Foundation • Institute on Developmental Disabilities – PRUCEDD • Community-based organizations (e.g. private providers) • Center for Autism (Ponce) • ACUDEN Child care providers & HS Programs • Title V Children with Special Health Care Needs • University of Puerto Rico: Institutes and academic programs.

Next Steps/Future Plans

• Dissemination of information about the new public policy bill and the rights of the population with autism.

• Assure private insurance companies are in compliance with the public policy.

• Establishes a surveillance system.

PR Partners • Department of Health • PR First Lady Office • ASESS (Administration of Health Services) • PR Autism Alliance • Autism Puerto Rican Foundation • Institute on Developmental Disabilities – PRUCEDD • Community-based organizations (e.g. private providers) • Center for Autism (Ponce) • ACUDEN Child care providers & HS Programs • Title V Children with Special Health Care Needs • University of Puerto Rico: Institutes and academic programs. • Riley Child Development Center, Indiana LEND

annie.alonso@upr.edu myrna.quinonez@upr.edu