Advocacy

PARTICIPATION IN AN INTERACTION PROGRAM CONDUCTED TO PREPARE SHADOW REPORT ON UNCRPD

Ms. Neelam Gautam, Executive Board Member from ACNS participated in the interaction program on “ Roles of stakeholder s to provide shadow report on UNCRPD” orgranised NDWA and NFDN on 26th August 2015 at Trade Tower, Thapathali. Participants agreed on to adopt holistic and inclusive approach to prepare the report based on reality.

Meeting with Hon. Minister; MOWCSW

Meeting with Hon. Minister Neelam K.C. (Khadka), from Ministry of Women, Children and Social Welfare, was held on 4th August 2015 to request enactment of National Disability Act 2072 and also discuss the issue of Autism. During the meeting Mr. Nar Bdr Limbu (NAB), Mr. Raju Basnet(PFPID), Dr. Kapendra Shekhar Amatya (ACNS), Mr. Jagadish Pd. Adhikari (DHRC), Ms. Suberna Kesari Chitrakar (PFPID), Mr. Bedraj Dhunhana (NHA), Mr. K.P. Adhikari (NDFN), Mr.Shudarson Subedi (NFDN), Mr. Shanker Pd Pathak (MOWCSW) and Dr.Sunita Maleku Amatya (ACNS) were present on the meeting.

An Interaction Workshop on Autism with Constituent Assembly Members

An interaction workshop on autism was organised at the Radisson Hotel, Kathmandu with Constituent Assembly members on April 5th, 2012. The programme was organised by the pioneer organisation tosupport people with autism in Nepal, AutismCare Nepal. The meeting was attended by several members of CA, including Chief Whips of Nepali Congress, UML and Madhesi Janadhikar Forum (Loktantrik). Prof. Dr. Deepak Mahara, advisor to AutismCare Nepal talked about the need of such an interaction programme.

Autism, he further stated, is a growing challenge not only in the other part of the world also in Nepal. Recent studies suggest that a staggering figure of one in 100 children are not being diagnosed of having autism. Dr Mahara further highlighted that with nearly 3,00,000 estimated cases of autism in Nepal, the figure easily outnumbers cases of HIV and diabetic patients. Autism is not in the national agenda whereas AIDS and diabetes are national priorities of the government. Failure to support autism, the government risks a huge burden of looking after people with autism for lifelong period.

During the workshop, Dr. Sunita Maleku Amatya, Chairperson of AutismCare Nepal shed light on autism in Nepal and worldwide as well as the activities AutismCare Nepal are involved with. AutismCare Nepal is the only active organisation that is run by passionate parents who have autism in their family. She stressed the need of early diagnosis and intervention to children with autism. She also gave a worrying figure that nearly 1% of Nepal’s total population may be suffering from autism, of which a large proportion may have severe autism.

Ramesh Lekhak, member of CA highlighted that government should include such important health issues in legal framework of the country. UML lawmaker Sapana Pradhan Malla talked about the two major issues in Nepal regarding Autism: inclusion of the subject in legal framework recognising the needs of people with autism and looking after the health of such people. She also emphasized on the need of institutional representation from organisations such as AutismCare Nepal while revising the Act related to disabilities. UML lawmaker Agni Kharel stressed the need in making relevant Acts and policies to support people with autism and stressed the need of awareness building activities. Screening of children for autism should be done together with other national programs such as vaccination schemes. UCPN – Maoist CA member Ek Raj Bhandari highlighted that there may be more people with autism than currently estimated and stressed the need to find out the scale of the problem in the country. Another UCPN – Maoist CA member Parbati Thapa, who is also a member of Women and Children Parliamentary Committee, vowed support to act on behalf of the committee and also stressed the need to coordinate with line ministries such as the Ministry of Women, Children and Social Welfare, and the Ministry of Health.

Radhe Shyam Adhikary, a lawmaker at CA representing Nepali Congress, stressed the need on awareness building through various media. He also emphasized for AutismCare Nepal to be developed as National Centre for Autism for Nepal. Chief Whip of Nepali Congress, Laxman Ghimire spoke the need for awareness at all levels. He also suggested that the next step should be to hold a larger workshop including Ministry of Education, Ministry of Women, Children and Social Welfare, Ministry of Finance, National Planning Commission to highlight the suffering from autism.