The Uncertainty of Tomorrow: Life of a Person with Disability without Parents

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I read an article recently published in theguardian written by Elaine Robertson Demby, mother of a child with autism spectrum. In the article, Elaine confessed that sending their son, Evan, to a residential school in another state was the most difficult decision she had ever made. She did so nevertheless to ensure his future- a future where he could learn to sustain his life if they were to die. The article is titled ‘Facing My Fear: To Save My Autistic Son’s Future I Had to Let Him Go’. The fears and concerns of parents who have children with disability in Nepal are no different.

“We want our son to be happy most importantly, even after we are gone. There is not a single day when we don’t wonder about his future without us,” shares Dr. Sunita Maleku Amatya, mother of a son with autism and chairperson of AutismCare Nepal Society (ACNS). Research informs that for someone to have autism it means the person will have impairments in communication, social participation and behaviour. 

Last month, a 63 year old lady in a village of Ilam, expressed her grave concern to me regarding what would happen to her daughter who is unable to differentiate between the right and wrong. Parents are an integral support system, as they enable social participation whether to access disability allowance, specialised education or arts. In achievement of these determinants of disability-inclusion, lies parents concerns for the future of their child. The concerns are - what happens to our child when we are no more?. Will my child be able to sustain his/her life, where and with who will he/ she live, will s/he continue to participate in education, employment and sports just as now, what about property rights etcetera?

However, in the United States (US), policies have been put in place to reassure parents. A parent of Nepalese origin, Mr. Nepal* now settled in the US, clarified that “one of the  main reasons is that social and regulatory mechanisms respects, guarantees and monitors the rights of the disabled.” Mr. Nepal's son has multiple disabilities; visual impairment, cerebral palsy and mild form of autism. He indicated that  his son lives in a specialised group home, similar to the one as Ms. Demby’s child. “The main reason for having our son live in a group home and away from home was an attempt to try to make him as independent as possible so that when the eventual unavoidable time arrives, he will be able to take care of himself. We know that he will have a major melt down but we are hopeful that he will manage to deal with the situation in familiar surroundings.  The state federal programs and his brother will be responsible for him when we are gone. The fact that this kind of social network is available here in the US is a blessing for people with disabilities,” Mr Nepal stated.

Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) titled ‘Living independently and being included in the community’expects Nepal as a state party to ensure that people with disabilities can live independently and be included in the community. Article 19 (b) stipulates, “persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” None of the articles in UNCRPD is blatantly dedicated to residential interventions catering to all levels of socio-economic status of people with disabilities without parents. The uncertainty faced by most parents with children with disability especially those with neuro-developmental disability likely lies in the fact that their child may experience discrimination. Discrimination under Article 2 of the CRPD is explained as the “exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others.”

As a disability inclusive development worker my thoughts are that there needs to be an incorporation of a welfare system that ensures children with disability can continue to enjoy the highest affordable standards of life even after the loss of their parents or guardians. The welfare system should empower parents and guardians of children with disability to believe that their child will be safe and will have reasons to be happy and engage socially. Along the same lines, Dr. Maleku Amatya, a strong advocate for autism mentioned, “I hope to have independent apartments with trained people where my son along with few others can live a meaningful and dignified life. We want to see him live there when we are still there. A trust will most likely run and manage this.” My aim in addressing this issue is so that we can begin a discussion on the formation of trust bodies and sustainable specialised residential care homes for all age groups at a government, non-government or private level. For example, those with economic means could come together to establish a fund from the property the child/adult with disability is entitled to inherit from their parental property to start a venture. The financial resource and property could be utilised in a way that generates regular income, ensuring inclusion opportunities for these children and adults.

Position: Senior Officer for CBR Programs, Karuna Foundation Nepal and Independent Disability & Rehabilitation Consultant

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