Building Relationships between SCI Consumer Groups in Latin America

1. Building Relationships between SCI Consumer Groupsin Latin America Bruno Landgraf das Neves Paralympic Athlete Adapted Sailing (Skud 18) São Paulo Paralympic Team

2. General Situation Relating to SCI in Latin America (1) 1. Overview In Latin America, as in most developing countries, people with disabilities are the poorest of the poor. And that is also true for people with SCI. People with SCI in most Latin American countries are not formally organized, but this does not mean they are not organized at all. • Pros and Cons of SCI-specific DPOs

3. General Situation Relating to SCI in Latin America (2) 2. Healthcare Notes on acute management and surgery for SCI consumers. • The surgical approach Medical complications and comorbidities. • Causes and consequences SCI management. - Preparedness for comprehensive SCI management

4. General Situation Relating to SCI in Latin America (3) 3. Education and Training (of both health personnel and SCI consumers) The place for SCI management in Rehabilitation Services General practitioners and SCI Preventive measures and counseling • Scarcity in the region

5. Current Status of the Inter-Group Contact in LA (1) Objective: Support the Global SCI Consumer Network “to improve the quality of life of people living with a spinal cord injury throughout the world” by establishing a Regional Network that can be part of the Global Network and represent it in the region and the region in it. Making contact and gathering information:

6. Current Status of the Inter-Group Contact in LA (2) Basic tool used for gathering information:

7. Current Status of the Inter-Group Contact in LA (3) Preliminary Findings: Statistics about SCI incidence or prevalence is not readily available. Services for spinal cord injured people are consider from good to regular. People with SCI are managed initially in general hospitals. Provision of assistive technologies is very limited. Rehabilitation services are considered from good to regular and provided in general hospitals and only available in cities. When organized (usually not), SCI consumers are members of organizations of people with disabilities. No specific organizations of people with SCI are reported so far from the information gathered. Access to wheelchairs and other technical aids is very limited in most countries.

8. Comments on the Situation Relating to SCI in LA after Research (1) • Overview Disability and Poverty • Along with bad transportation systems, availability of proper wheelchairs and other assistive technologies, limited access to education and low educational levels, huge environmental barriers, segregation and discrimination of indigenous and other ethnic groups, etc., limit even more the possibilities of social inclusion and participation of people with disabilities in general.

9. Comments on the Situation Relating to SCI in LA after Research (2) 2. Healthcare Limited accessibility, availability and affordability. • Public health services are limited in access, quality, technical resources, and accessibility in most countries, and rehabilitation services are still even more limited and scarce in the region. Management services are fragmented and distant from the consumers in the region.

10. LA SCI Consumers Network: Plans for the Future Challenges and opportunities ahead: • Language Barrier • Consolidate the Network’s scope • Need for in depth research • New partners in the region

11. Thank You!