|Poonam Natarajan, Chairperson, National Trust|
The parents of children with special needs get huge doses of advice from everybody, be it relatives or professionals. While some of it can be ignored, there’s value in much of what they say. Take the importance of planning for the future. This is a huge worry for most parents because a child with disabilities may never be able to earn as much as their other children. In order to support the child and feel a sense of confidence about the future, here are a few strategies they can try.
Attitude counts: A positive attitude, belief in the child’s abilities and the strength of the support networks can take one a long way. There is an overwhelming belief that a physically or mentally challenged child will always be a ‘burden’ for the family. This has almost always been proved wrong by families with a positive outlook. They have looked for the child’s strengths and helped develop them to make her an active member of the family. All the members can contribute in different ways to develop various aspects of a child’s personality and skills to make her self-reliant.
Saving is important: A realistic assessment of the family’s income, along with awareness and understanding of the schemes available, is necessary for the parents to create a savings plan for the child. It is up to the parents to ensure that their child leads a dignified and financially secure life. So, whenever it is possible for the parents to put away a little more than what they had planned, they should. Every bit will help when their child has to live alone as an adult.
When it comes to inheritance, very few people know that children with disabilities have an equal right to the parents’ property and wealth. Very often, they are left out by the parents and siblings. We must ensure that they have their rights just like any other person. It is important to appoint a trustworthy legal guardian for your child.
Assisted living: Many organisations and parents’ associations are now planning supported and assisted living programmes for people with disabilities. As per this plan, the residents will be the decision-makers and will take care of as many aspects of their own lives as possible. Additional support, medical and otherwise, will also be provided in the programme. The National Trust has opened Samarth centres, residential care facilities for both respite care, which can be for a short period, and for prolonged care, which can extend to a very long term.
If we are a civilised society, we surely cannot live by the law of the jungle—survival of the fittest. There has to be a safe environment and concern for people who have special needs. Their right to live with dignity, to be educated and to work has to be respected. This will happen only with awareness and sensitisation of the civil society.
How people with disabilities negotiate their lives as adults depends on the nurturing in their formative years and the extra miles that the parents walk.