Challenges with Special Need Children: Parents’ Concern

Parents’ Concern for their Differently abled child: What Will Be My Child’s Fate After Me?

The inspiration to pen down my thoughts for this blog was triggered by so many incidences related to specially challenged children and persons. I distinctly recall one such incidence in Faridabad, I saw a mother and father literally carrying their child or we may call him an adult son on their shoulders. And, with my limited knowledge of mental and physical challenges, I could understand that the child/adult was suffering from severe cerebral palsy and mental retardation. The sight was, no doubt, heart-rending but what shredded me the most was the thought – what will happen to this boy after his parents are either dead or incapacitated. Another incidence which leaves me perturbed is that of the year 2019. I was waiting at New Delhi Railway station to receive one of my relatives, I saw a few people teasing a boy, who must have been 16-17 years of age, apparently with mental and physical challenges, and his head was cleanly shaved. I could assume that there would have been a death in the family of the child and was abandoned by the family. Therefore, I contacted the Childline and was able to get the child rescued. Later, I received a feedback from the rescue team to realize that the child was an orphan and had lost his father recently, in addition to the misery the hapless child was abandoned at New Delhi Railway Station by the family. I was struck again; the same question was staring my face – what will happen to the child?

I got chance to interact with lot many parents of such children during my professional   career with various NGOs, these NGOs have been working for specially challenged children for fairly long time. I could observe the same question, I found parents majorly grappling with same issue, ‘what would be my child’s fate after me?’.

Initially I wanted to find out the solution of this issue in the Guardians and Wards Act, 1890, The Hindu Adoption and Maintenance Act, 1956 and The Hindu Minority and Guardianship Act, 1956. All the three Acts have their own limitations, as all the three laws are meant for minors and hence a person, not a child, suffering from mental and physical special needs is not covered under any of these laws. I was frantically looking for a law, the provisions of which, can cover both the minor and adult persons with special needs.

I came across the National Trust Act, 1999, an Act to provide for the constitution of a body at the National level for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities and for matters connected therewith or incidental thereto.

Section 14 of the National Trust Act, 1999 provides for Appointment of Guardianship. The parent of a person with disability or their relative may write an application to the local level committee for appointment of any person of their choice to act as a guardian of the person with disability. This includes any registered organization, which has made an application before the local level committee for appointment as guardian of a person with disability.

While appointing a guardian, the local level committee shall consider, whether the person with disability needs a guardian and then, the committee shall also decide for the purpose for which the guardianship is required for person with disability.

While making recommendation for the appointment of a guardian, the local level committee shall first of all consider whether the person with disability needs a guardian and if yes, for what purpose?  Every person appointed as a guardian of a person with disability shall, either have to “take care of such persons with disability and his property or be responsible for the maintenance of the person with disability”. The expression “relative” in this case, includes any person related to the person with disability by blood, marriage or adoption.

Every guardian so appointed shall within a “period of six months from the date of his appointment”, deliver to the committee, an inventory of immovable assets belonging to the person with disability and all assets and other movable property received on behalf of the person with disability, including a statement of all claims due to and all debts and liabilities due by such person with disability.

Every guardian shall also furnish to the said committee within a period of three months at the close of every financial year, an account of the property and assets in his charge, the sums received and disbursed on account of the person with disability and the balance remaining with him.

Whenever a parent or a relative of a person with disability or a registered organization finds that the guardian is abusing or neglecting the person with disability; or misappropriating or neglecting the property, it may in accordance with the prescribed procedure apply to the committee for the removal of such guardian.

We appreciate the provision for appointment of guardianship, which is aimed at not only to serve to the best interest of person with disability but also provides a safeguard to their human right. This provision inadvertently has gender bias, pronoun used in section 14, 16  and 17 are ‘He’ and as such the provision needs to be amended accordingly for giving a woman an opportunity to be appointed as a guardian and also for a female with Disability to get a guardian appointed for her. This is important for a legal fair play.