Dawa (name changed) has neuro-developmental disability called cerebral palsy. When Karuna Foundation Nepal (KEN), a cross disability NGO identified Dawa in his village in Kavre, he seemed to be neglected not only by his community but also by his family. Reasons such as physical injuries, lack of care, lack of referrals for medical and rehabilitation services, poor socio-economic status, and remote geographic location of his house indicated his overall condition. Based on these determinants and Article 9 (1) of the Convention on the Rights of the Child (CRC), Dawa was transitioned to an assisted living facility for children in Bhaktapur, Suvadra Foundation Nepal.
From then to now, seven years fast forward at Suvadra, Dawa plays wrestling card games with his friends, speaks basic English language and is experiencing the emotions of being a teenager such as wanting to go school by himself; unaccompanied. Amidst Dawa’s many life experiences, he recently turned 18, which means it is time for him to leave the assisted living facility and make space for other children waiting on the list for rehabilitation services. Unfortunately, there seems to be lack of assisted living facility for adults with disabilities in Nepal. In addition, going back home means living with his stepfather who has alcohol abuse issues and for whom Dawa is not a priority. His mother passed away and his grandparents suggest they are too old to care for him.
CLOSE THE GAP
Only one out of 38 individuals and organisations of the disability sector, that were contacted as a part of this article’s research, accommodated adults with disabilities, 37 were for children. This lack in assisted living facility for adults in vulnerable psychosocial situations leads most likely to compromised and undignified life setting. For those with a supportive psychosocial environment and or a strong socioeconomic status, assisted living facilities will guarantee a secure dignified life when parents or guardians are no more.
RECOMMENDATION: PILOT TEST SOONER THAN LATER
The government has the ultimate responsibility to form a regulatory body to facilitate pilot testing of an assisted living facility with enforcements of safety, hygiene, and protection standards. This body can be formed in technical consultation with parents of children with disabilities, advocates and lobbyists of the disability sector, engineers, architects, specialist medical and rehabilitation practitioners, and those who run day care centers and rehabilitation homes.
An assisted living facility for people with disabilities whether privately run or by non-profits must be critically planned, designed and must have a financial and human resource sustainability model to last in the long run. Human resources must have the capacity to deal with the wide spectrum of specific needs of each individual with a good resident to staff ratio to control quality of service. Reasonable accommodation to promote safe mobility and daily activities is crucial. Imagine allocating a person with severe intellectual impairment on the third floor with low railings on the balcony and stairs. Allocation of suitable rooms and roommates cannot be ignored either. Overall, assisted living facilities must have a safe, caring, and productive environment to facilitate attainment of optimum wellbeing, rehabilitation, and development in education, livelihood, and social empowerment.
Advocating for a well-regulated licensed assisted living facility is by no means to encourage families from getting rid of caring for their child with disability. For this reason, founding members must design a strong guideline for admission into the assisted living facility. The guideline must also bind founders, government, and board members to provide permanent or temporary assistance.
Chairperson of Autism Care Nepal Society (ACNS) and a mother of child with autism, Dr Sunita Maleku Amatya, shares, “The most important thing is that our son to be happy even after we are gone. There is not a single day when the uncertainty of the future doesn’t bother us.” The uncertainty faced by most parents regarding what the future must be like for children with neuro developmental disability such as autism spectrum disorder (ASD) or cerebral palsy, likely lies in the fact that their child may experience discrimination, get compromised care or may become victims of vulnerable situations. Thus, the time to act and secure their future is now.
This article was written by our Senior Program Officer-Community Based Rehabilitation, Ms. Samridhi Rana Thapa. The article was originally published in the national daily, The Himalayan Times on 9 July.