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Legal Capacity and RPD Bill: A Parent’s Perspective

By Sumanta Sen Roy

The Draft RPD Bill that was finalized by the Drafting Committee and submitted to the MSJE brought a hope to the Disability Sector. Persons with disabilities, their parents and families, and workers and professionals in the sector were tired of lack of action or inaction by the Central Government and the different state governments even after enactment of Persons with Disabilities Act 1995 and the National Trust Act 1999. There were issues of concern for different sections of stakeholders even in the new bill but still this Bill came as a ray of hope as it appeared to be largely rights based. The bill that was drafted by the Committee appeared to be forward looking.  It introduced new areas such as children and women, legal capacity, and others. However, the subsequent happenings with the bill turned out to be very depressing. There was wide-scale agitation and unrest over the bill from the end of last year. The expectations of the disability sector were shattered; groups got divided in their perceptions of the bill and with dissolution of previous government after the elections, the future of the new law started looking bleak. Now the new Government that has come to power had promised priority in enacting the RPD Bill in their election manifesto and we believe that the new government will accelerate the whole process.

One issue that has been widely debated and over which there still exists a lack of consensus is the issue of Guardianship. A lot of debate has taken place all over the country on Guardianship ever since the drafting process started and consultations at the national and state level were held. The Draft Bill mentions terms like plenary guardianship and limited/restricted guardianship. But somehow, parents like me who are fathers or mothers of children and persons with Intellectual and Developmental Disability (IDD) could not feel assured.

We have some understanding of the legal guardianship under the NT Act. Many parents have already taken guardianship for their sons and daughters and many more have not done anything as they are not aware that anything such as legal guardianship exists. The Local Level Committees under the NT Act had a large responsibility in ensuring social security of these adults but, unfortunately, the nationwide scenario is very unhappy on this score. As a result, a large number of parents do not know about legal guardianship even today and many are waiting to get their certificate of guardianship for months together.

The idea that every person has legal capacity is highly welcome. We, as parents, always want that our children and young adults be able to blossom to their fullest and take charge of their lives as far as possible. Many parents of children and persons with intellectual and developmental disability have come together to form Self Help Group of parents to try to ensure that our children get the opportunities to grow to their full potential as we see absence of service and support from the Government level. This holds true for every state in India. We try that they become as independent as possible because we always live in fear of the future. What will happen to them when we are not there?  In fact, to my understanding, many parents have come together to form groups to look for answer to this question. So, with all our added strength, we try to find answers to this question. This includes various trainings for them, helping them to become self advocates, running vocational training centers for them,  setting up of homes for their future security (though we do not want our children to live a segregated life in a home outside the community life, but as of present that seems to be the most suitable option).

But it is also fact that there is a limitation to exercise legal capacity or understand it, due to lack of intellectual and cognitive ability. And, therefore, they should have access to legal guardianship to protect their interests which is already provided under the NT Act. A legally sanctioned support structure does exist at present which will provide the necessary support effectively. The UNCRPD has a provision in the form of Supported Decision Making (SDM) which suggested that a group of people from the society belonging to different sections will constitute a support group which will help the PWD/PWIDD to take decisions. The SDM is no doubt an ideal concept. Experience tells us that it will take a long time for such a support structure to come in existence. Therefore, the parents of the PWIDDS should have an alternative available to them in the form of guardianship that already exists in the NT Act.

Parents of children and adults with intellectual and developmental disability are worried that the introduction of a new system of protection is being envisaged even as the existing system has been found not to be functioning properly. We understand the present concept of legal guardianship and are trying to bring that mechanism into practice in our lives through individual and collective efforts. We are putting utmost efforts to activate the non-active systems and in our struggle of doing so, every day of our lives we is becoming more tired, hopeless, frustrated, and worried. Which is this world where I have to leave my child behind – is a question that haunts us through our working hours and during our sleep.

We understand that plenary guardianship is somewhat like the present form of legal guardianship. We understand and appreciate its limitations. It does not practice the ethos that we would like to bring into our children’s lives – of living independently as far as possible. If we are not too happy with the concept of legal guardianship which does not leave any room for the exercise of rights of persons with intellectual and developmental disability, we are far more apprehensive about limited/restricted guardianship. We still do not know what it would be like.  With legal guardianship under the National Trust Act 1999, we know that the guardian is under certain specific obligation and has certain responsibilities towards the person of whom s/he is the guardian.  But limited or restricted guardianship implies that it would leave room for exercising rights for the person with disability. While we want our daughters and sons to exercise rights, our fears are that even the existing commitment, however little, may get diluted in that process.

As a parent of a young woman with intellectual and developmental disability, I feel that the concept of legal guardianship should not be abolished just now. Rather, a change should take place gradually, over the years whereby there can be a transition, as smooth as possible, from present form of guardianship to limited guardianship. The support structure to encourage supported decision making process should come in place during the first three years through pilot projects, which can pave the path of transformation from plenary guardianship to limited/restricted guardianship. That model, then, should be replicated and practiced in the rest of the country. Parents want rights, dignity, and respect for their children with IDD. But shelter, physical safety, nutrition and health issues get first priority. The new law must ensure that these needs are met for persons with Intellectual and Developmental Disability (IDD) and a transition thereafter to establish rights, dignity, and respect for them will be more than welcome to the parents, workers in the sector, and to persons with IDDs themselves.

Author:

Sumanta Sen Roy is a parent of a young woman with intellectual disability. Along with other parents of children/adults with intellectual disability, he has formed a parents’ support group named PARTNER which operates in Hooghly district of West Bengal. PARTNER is also a member of the national confederation of parents’ organizations, PARIVAAR.

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For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.

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