Kathmandu: Visit to ID and Autism Associations

http://www.autismnepal.org/ppy MLK Day! Today we met with two different disability organizations. First, we visited the Association for the Welfare of Mentally Retarded (AWMR), a parent advocacy similar in concept to The Arc of the United States, except that the AWMR is still in its infancy where The Arc might have been in the 1970s. The AWMR was founded in 1981. We met with Board leaders and other parents of children with disabilities. Mr. Shrivastava, chairperson of AWMR and parent of an adult with ID, presented on the background of the association as well as on the situation of people with intellectual disabilities in Nepal.

cow wandering in the streets along the way

sites from our bus trip to the site visits

The situation Mr. Shrivastava described confirmed much of what we have read and learned so far (see previous blog). That is, that poverty is a major challenge to providing services to individuals with disabilities. Also, the recent political unrest has been a major challenge. The government is not yet organized and people with disabilities are not on the radar screen of the newly formed Parliament. One of the most interesting cultural differences we heard about today was that the caste system is strong in Nepal. Also, people with disabilities depend on family members to provide services and supports. One common strategy is for families to arrange marriages of their adult children so that they have a spouse to help care for them. This is easier for men with ID to find a spouse of a lower caste to agree to the marriage. It is good for both of them because the wife will be able to marry into a higher caste and thus raise her family’s social status. We also learned about the educational and employment situation for people with ID. Only a very small percentage of people with disabilities are fortunate enough to go to school. Although the policy states that the country supports inclusive education, in reality if children go to school at all, it is usually in a special school for their specific disability. In regards to employment, the association is attempting to find agricultural work, making peanut butter, or other small unskilled labor job opportunities. There are no supportive employment programs.

Laura, Mr. Shrivastava, me, and Mr. Kafle

One of the children at the AWMR with tattoo from UDel

Families at AWMR

Later in the day, we were able to visit a Autism Care Center. This is a newly established center started by three parents of children with autism. The impetus for starting the center, of course, was the birth of their child and finding out that there are no services for individuals with autism. The rented a nice house in a residential neighborhood, travelled to India to learn about how to diagnose autism and how to use Applied Behavioral Analysis (ABA) and other effective interventions, and came back and trained volunteers to help other families and children with autism. They only have two paid staff – a psychologist and psychiatrist. All the other staff are parents or other volunteers. They desperately need funding and more professionals to provide diagnoses and interventions. We were all very impressed by the passion and determination of these parents.

In the evening Dr. Kafle gave us a presentation on the policies, challenges, and prospects regarding education in Nepal. He also introduced us to a father of a son with autism who shared his personal story with us and allowed the students to ask questions. We were then honored to have dinner with both of them in the hotel where we had rented a room for the presentations.

Tomorrow morning most of the students are going on a tour of the base of Mt. Everest by airplane. I am going to rest! It’s been another long day!

Laura presents gift to staff of the AutismCare Nepal