The world is celebrating today, 3rd December, as world disability day. On this day, NGOs, governments, and organization working for benefit of disabled people are organizing events to promote awareness on disability and demand for social status of such people. In India too the events are being hosted on this occasion and a considerable work is being done for special children future.
A special child is different from a physical disabled in the respect he/she may be incapable to take decisions-whether financial or personal, lifelong. So the planning for the future of these children demands an utmost importance. Apart from financials, there are many issues, some of which are legal, which parents has to address viz. guardianship, residence, etc. Unawareness on these can lead to problems which may jeopardize child future.
Here is why a deep thought should be given and what can be done to ensure the future of the child goes in right hands-
1. Guardianship: There is no doubt that parents are the natural guardian of the child and so they will be the best individuals to take care of him/her. But this natural guardianship is till when the child is minor. On attaining majority, i.e. 18 years of age, parents/Guardian with special children has to take legal guardianship from the court. Secondly, future is not certain and who will take care of the child if something happens to the parent is the major concern with these families. For parents who have only the special child to take care, finding the right guardian is a daunting task. Even in families where siblings are present, the issue of guardianship has to be taken much early in life. In one case I met a family whose one child was working abroad and the disabled child was in India. They were concern that the elder child may not come back to India cause he is earning well there. Such situations can arise. Hence it becomes equally important that an initial discussion with the guardian to be considered happens for the benefit of the child. This helps in knowing the eagerness of the appointed guardian to take the responsibility. Also in cases where guardian is other family members, the awareness about child needs Is very important and parents need to make sure that a process is taken to make understand the guardian about child needs. Sometimes families might have to appoint two guardians- one for day 2 day affairs and other for financial affairs. Families where guardian is not available can even take the help of National Trust of India, which is a government organization working for benefit of special children’s with four major disabilities-Autism,Cerebral Palsy,Mental Retardation &Multiple Disabilities.
2. Residence for Child: This is one of the most critical issues wrt the special child. Parents with no proper residence have to rely on the support from government or private organizations for residence of the child in case something happens to them. Thus, Real Estate buying becomes a very important goals for families with special children. Plan it early to ensure you have the right funds to buy a house in your lifetime. Many families want to avoid housing loan liability considering the special child care. In case the child has a sibling then parents have to ensure the both children rights are taken care. By writing a will the property utilization for the benefit of the childrens can be assured.
3. A Letter of Intent– With special child the day to day needs are very different and to be addressed. You being a parent knows it when you take care but what happens if some mishappening occurs and the appointed guardian has to take the responsibility. It will take a long time to understand the child needs if the responsibility has come as a sudden. In US a letter of intent is a very important instrument to deal with such situations. In this the information related to the child life is documented. Right from his/her eating habits to the behavior of child, all aspects are covered so that the person who is going to take care get the required information about the child needs. The instrument is successfully used not only for guardian but also for sibling to get them aware about the child requirements. At times it becomes a source of reference for child upbringing even for the parents. Ensure you pen down your child needs as you come to know that he/she is a special child. Make changes in the document as the child grows so that all information can be captured. Most importantly, share it with the people who will be future care takers of the child.
Similar to these there can be many other issues which will require utmost importance in the life of a special child. The only way you can address them is to plan ahead.