Today is a very important day and I am pleased to be present here. The kind of importance this project has got can be ascertained by the fact that being rather closely associated with AADI, the number of queries I get for this project are much more than any other project associated with the disability movement.
Personally speaking, I associate the role of the caretaker with the entire self-advocacy movement that we people have been stressing on in the last few years. I personally believe that good caretaker would be, if I may be allowed to say so, like self-controlled remote system for a person with disability, who switches on and off just according to the need of a person with disability. It means, when such a need arises, he happens to be there but at the same time, is not a disturbance in the life of a person with disability and rather than enforcing himself on the person with disabilities, he gives him the much needed space.
This can be a slightly difficult situation to be in. For example, whereas watching a late night movie is a personal issue for me and I would not like my caretaker to interfere in that but being a specially trained person that you are going to come up with, such a person should be able to give a fitting and an appropriate answer to a person on the road, if such a need arises and explain to him that what my disability is and should be able to reply if I am not able to reply to a man making fun of me.
Of course, I do not need to point out that though one can hire any person for the usual household needs like cooking, washing, dusting but it is the special needs of person with disabilities that a professional caretaker will cater to and if he cannot cater to those special needs, then there is a problem. A caretaker must be in a position to handle the special needs of a person with disabilities with that extra ease and perfection. So apart from those basic services like cooking, washing and cleaning, a caretaker should be able to attend to those special needs of a person with disabilities like feeding and toileting. While doing my field work for today, what I came to know is that if you shy away or are uneasy about any of these special basic needs of persons with disabilities, its better to not take up this job. To add to it, there is a need for a caretaker to be humble, soft spoken and patient. Your job is to explain all this to the caretaker in an a manner that he understands his duties while going into the field.
Personally speaking, what worried me when I heard of this program initially was the fact that will a caretaker become another domestic helper in the long-run? For me, this will defeat the very purpose of providing a helper. And that is where your role, as a professional comes in. You should make it very clear to the concerned family that for a caretaker, it’s the person with disability and his needs that are important and if they need a person for any other work, they should try other sources.
You also need to cater to the gender based needs of the services For that you need to provide an equal number of male and female caretakers.
But, this by no means signifies that if there are no gender based issues, the people who use these services do not have any problems with the caretakers at all. Though, the national trust says that while providing a guardian, it sees to it that there is no misuse by the powers given to the concerned person, it still needs to be ascertained whether those provisions really work on the ground. Similarly, you need to ascertain that there is no misuse of power from any side in this case also. A system needs to put into place, where you can keep in touch with both the persons with disabilities, their families and the caretaker to see it all sides are satisfied with the arrangement.
I am also slightly concerned about the timing of providing the caretaker. As per my understanding, though it would be difficult to begin with right now, at some point of time you need to work this out with the family. Though, certain families may need such services from day one, it needs to be worked with accordance with the concerned family that what is the appropriate time of providing a caretaker. Since both person with disabilities and the caretaker need to adjust with each-other, it may be better if you can talk with the parents to ascertain the appropriate time of providing the caretaker so that both the person with disabilities and the helper get the due time to adjust to each-other.
Then comes the all important issue of training. Though I do not know how you will work this out, but the training will have to be both general and specific. Moreover, at both general and specific levels, you need to work out your methodologies in such a way that the caretakers get the much needed practical training to provide the services.
You need to train the caretaker according to the specific needs of the concerned person with disabilities. And since the needs of two persons with disabilities may be entirely different from each-other, the caretaker should be ready for any kind of duty. The duties may change entirely, if by any chance, from a duty of a less disabled, the caretaker is asked to help a more difficult case. Moreover, duties may also change in case of any mishap and the caretaker should be well-prepared to handle such a situation. Though, some people may disagree, I feel you need to match both the physical and intellectual needs of the service user with the caretaker. You cannot and cannot appoint a thin caretaker for a person with disability who is slightly overweighed. It is your duty to work this out both with the person with disabilities, their families and the caretaker so with the right person at the right place, you can provide the best services.
To end with, this is a program where the trained professionals are going to take of great responsibilities. But, your responsibility is even greater since you need to train these professionals and if they fail in any way, the responsibility of that failure will be solely on you.