ASCoN SCI Consumer Network Shivjeet Singh Raghav Chairperson ASCoN Consumer Network President Consumer Committee Spinal Cord Society of India Oct 2013

History ASCoN Consumer Network established during the 9th ASCoN Conference in New Delhi in 2010 with the goal of: improving the levels of participation and quality of life of persons with spinal injury across Asia; bringing together existing SCI consumer groups within Asia and to support the establishment of new SCI consumer organisations.

Context The World Report on Disability highlights that PWD’s have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities Article 33 of the UNCRPD states that “the full participation of civil society, in particular pwds and their representative organisations is essential in the national monitoring and implementation process”. Persons with disabilities should be consulted in the development of strategies to eliminate barriers and promote inclusive and accessible health care. (Draft WHO Action Plan ) The WRD supports the development of networks of disabled people who can campaign for the rights. The report recognises that disabled people often have unique insights about their disability and their situation and should be actively involved in formulating and implementing policy, laws, and services.

ASCoN Consumer Network Goals  Development of steering group to lead process and increase membership  Encourage/facilitate establishment of new National SCI consumer bodies and strengthen capacity of new ones  Share good practice/learning through networking and linkages nationally, regionally and internationally  Increase engagement in regional and international policy dialogue and projects  Organisation of annual meeting and workshop during ASCoN conference

Steering Group and Governance Steering committee tasked with developing and leading the ASCoN Consumer Network:  Bangladesh: Mr Anwar Hossain  India: Mr Shivjeet Singh  Malaysia: Ms Bathmavathi Krishnan  Nepal: Mr Shiva Neupane  Sri Lanka: Mr Cyril Siriwardane  Thailand: Ms Nipapan Tipayajak Chairperson (annual rotation)  2013 Mr Shivjeet Singh  2014 Mr Anwar Hossain  2015 Ms Nipapan Tipayajak

National SCI consumer organisation development India – SCI Network India Nepal – Nepal Spinal Cord Injury Sports Association (NSCISA) Bangladesh – Spinal Cord Injury Development Association (SCIDAB) Thailand – Northern SCI Network Sri Lanka - Sri Lanka Spinal Cord Network

SCI Network India Setting up SCI Network of India Draft on SCI management submitted to the Government Prevention Outreach Programs designed to spread awareness about causes of SCI as well as prevention of complications due to improper evacuation with target audiences: a) School and college students b) Swimming pools and sport complexes c) Traffic police and military police

NSCISA Nepal Office established and staff employed Strategic Plan Developed Links for funding, mentoring and organisational capacity development established with Ireland and Denmark Database established 100 members Promoting and organising sports events Supporting members to find and retain employment

SCIDAB Office established and staff employed Strategy document and operational policies published Membership Database established 550 members Peer Counselling/Support programmes established Active in lobbying for rights of PWD

SLSCoN Sri Lanka Office establishd and staff empoyed Setting up of two half way homes Sports competition with annual meeting Awareness Prgram in Schools regarding evacution of accident victims.

Northern SCI Network (Thailand) Committee established Home visits organised to advise people with SCI Co-ordination with other dpo’s at national and regional level Special emphasis on employment of women with SCI

Sharing Good Practice & Promoting Partnership Facilitation and promotion of linkage and partnership between SCI organisations in different parts of the world Nepal Spinal Cord Injury Sports Association and Spinal Injuries Ireland Spinal Injuries Association Australia – ASCoN SCI consumer network

Engagement Internationally In conjunction with ESCIF we are supporting the development of the Global SCI Consumer Network and increasing participation and representation of SCI consumer groups from Asia in international dialogue, projects and actionwww.escif.orgwww.globalsci.net Creating a platform for international agencies to become better informed about the lived experience of persons living with SCI in low resourced countries.

Annual Workshop ASCoN Conference Malaysia 2012: Workshop participation from Nepal, Bangladesh, Thailand, Sri Lanka, Malaysia, Australia, Netherlands Agreed to report back on single point agenda relating to country specific issues (i.e prevention; pre-hospital care; rehabilitation protocols; vocational training/economic independence Malaysia – First ASCoN games/Tomasz Tasimeski facilitated

Future Plans Encourage new members to join Regional data collection and feeding into reporting mechanisms with United Nations Convention on Rights of Persons with Disabilities Dissemination of IPSCI Report Training and capacity development support programme for members (organisational capacity development; peer support/counselling; UNCRPD - monitoring and reporting levels of implementation

Future Plans Funding i.e training and capacity development; exchange; participation Promotion of sports and recreational activities for people with SCI Facilitating increased opportunities for social- economic inclusion Organisation of annual ASCoN consumer workshop Active participation and promotion of Global SCI Network

ASCoN - Coimbatore Country specific status and projects Implementation of UNCRPD status How to promote the development of SCI organizations and establish new ones International Cooperation and exchange WHO, ISCoS Global SCI Consumer Network Regional ASCoN Consumer Network Strategy and Planning