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SHRIMATI RENUKA CHOWDHURY (KHAMMAM): Madam, I thank you very much for allowing me to speak on this subject.

SHRI SOMNATH CHATTERJEE (BOLPUR): Has the order been changed? ... (Interruptions)

MR. CHAIRMAN : Shri Jafar Sharief was called but he was not there.

SHRI SOMNATH CHATTERJEE : Therefore, the Congress Party has lost the chance!

MR. CHAIRMAN: In the second round, we have given them a chance.

SHRI SOMNATH CHATTERJEE : The first round is not complete, Madam. ... (Interruptions)

SHRIMATI RENUKA CHOWDHURY : Anyway.... ... (Interruptions)

SHRI SOMNATH CHATTERJEE : I concede your right. ... (Interruptions) I concede the opportunity that is given to her.

SHRIMATI RENUKA CHOWDHURY : Thanks. That is very charming and chivalrous.

SHRI MADHAVRAO SCINDIA (GUNA): A chivalrous gentleman!

SHRIMATI RENUKA CHOWDHURY : Yes.

Now, this is a subject that has been gathering dust for some time now. If I am not mistaken, this Bill was brought forward in the Rajya Sabha at one point of time. Then, it went back and it has now come up. This is a very sensitive subject, something for which perhaps the country needs to be sensitised because many of us are uncomfortable when we look at someone with a disorder like this. Many of us do not know how to handle such retardation or cerebral palsy.

Even less is understood about autism. It is sad that less is understood because statistics say - if I am not wrong - that almost one in every 500 suffers from some kind of autism or the other which is often not understood. The parents are not equipped to deal with this. Social structures are virtually non-existent. So, what is the first thing that strikes us for the need to have a Bill like this? What is the first need that strikes us all? As parents or surrogate parents when we look at the children, and the dream, barring cutting across all religious and economic lines, the one dream that all of us have and the anxiety that all of us have is: what happens to my children after me? The norm is that, at least, we live a shorter life span than the children do. Fortunately or unfortunately, these children who are afflicted with this disease or disorder are the people who can live a perfectly normal span of life. So, the first anxiety that needs to be set at ease is that we should have the facility that parents can give their money which will be monitored and kept in security and which will be executed for the welfare of that particular child. This would mean great trust, great transparency and the ability to handle this so that in our life time, we have the peace of mind that this money is going to go where it needs to go.

There was a letter addressed to the present Prime Minister, Shri Atal Bihari Vajpayee. This letter was addressed by a group of parents and professionals who have drawn his focus to this Bill so that a substitute care giver could be appointed for the protection, care and decision-making of those who are incapable of such decisions. I am extending this to those who do not need this help and who undermine their ability and their aspirations. This national Bill was envisaged, as I see it, as a substitute care giver.

Regarding parents of such people who live in perpetual fear, there is a lot of enigmatic development that has to take place; and the dynamics of implementing this have to be remained very sensitive and responsive to a system which has shown that time and again we have failed to deliver the goods. So, this is what we call the individual contractual capacity. Basically, it has to be a contractual capacity so that the people will be able to take care of their children after their own life time.

Mental retardation often needs guardian. Now, when we come to mental retardation, the other check point that I would like to impress upon is quite often very cruelly this concept of diagnosis of such children and the ability for parents to palm off such children is misused. It has happened. We shudder the thought of it. The fact remains that quite often a small disability, even something as dyslexia is viewed as retardation. Due to influences of various kinds, we have misused the powers and we have had such people certified and put away. So, it is harmful to digress from this concept a little bit. We have seen this happened to women who are in alunatic asylums, who sit there, who are perfectly normal but are not wanted by their own people or their society.

When it comes to autism, it is acknowledged as one of the most heart breaking disease. Nobody really knows what causes autism, whether it is genetic or whether it is something that you acquire as you go along. Nobody knows this. On one side, we are doing DNA splicing, we do gene interference but we are not able to understand what autism is. Some of these children who are autistic can be very brilliant. They have a pre-determination towards some kind of art or Mathematics.

Let me tell you this for the interest of the House. If I am not mistaken, it was brilliantly portrayed by one of the film stars in the West, known as reins man. This very prominent film star, Dustan Hoffman acted in it. It helped portray the poignancy of this disease.

Now, autism comes along with multiply burdened problem. It does not come in one direction, which is the worst tragedy. It means it compounds the injury. So, we have children with autism who then suffer from cerebral palsy, down syndrome, wet syndrome, facial disorder or visual impairment among others. So, when we decide that we are going to empower somebody else, then I will urge, with all the anxiety that I have at my command, that we must see that we cater to the periphery, to the range of all these, to the entire concept of what autism is, not say it `autistic' and put them in somebody's care. The monies are not understood and translated for the care of all these diseases because we have red tape which comes in. The bureaucratic red tape which comes in and says: "Oh, but this child has been given this money for autism and not for cerebral palsy, or you know that this has been for treatment of cerebral palsy which does not take in visual impairment or seizure that comes under the heading of visual impairment; `seizure disorders' could be epilepsy. So, it does not come under this heading."

So, there is a great complexity about understanding the disease in itself and how we are going to apply it and how we are going to cater to all the needs. On the one hand, India can take pride in being the leader in considering progressive legislations. We can give us a pat on the back because we have taken legislations for persons with disabilities in general and we have taken the lead in South Asia on having passed the progressive Acts such as the Persons with Disabilities Act, Equal Opportunities Act, Protection of Rights Act and Full Participation Act. We have also taken a very bold and laudable step by considering the inclusion of autism in the said Act because autism was not known, it is still not known and even Parliament does not know. It would be nice if the hon. Minister could organise some kind of sensitization or awareness to a programme to be given to the Members of Parliament because we go into our constituencies, we find people who come to us with their children and they do not know what is wrong and the local infrastructure is not capable of diagnosing or prescribing anything for them. Likewise, the National Trust Bill for Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Bill is a progressive Act. That faces up squarely to the States' responsibility of providing care, protection and substitute decision-making for those citizens who need help. Because of the contractual incapacity, persons with mental retardation, etc. often need guardianship, even after reaching adulthood. Many people believe that this kind of a disease affects the youngsters and it is over and done with and after that adults are not their concern. We must constantly remember that children who are affected with this disease grow into adults and still have the diesease, still need monitoring, sexual needs, habits, sanitation and hygiene, etc. which need to be cater to.

Now, the procedure for appointing a guardian was available to persons lacking contractual ability under the Indian Lunacy Act of 1912. The Lunacy Act was repealed and then the Mental Health Act of 1987 did not include the mental disabilities which gave us a hard time. Hence, no legal procedure was available to appoint guardians for those who so required it. So, in consonance with its philosophy of providing protection with autonomy, the National Trust Bill incorporated a procedure for appointing guardians for those adults with mental retardation and autism and cerebral palsy of those who needed them. While such a procedure is specially needed to protect the quality of life for the above disabilities, it has no relevance for physical disability.

So, what we need to focus when we constitute such a Bill is the quality of life. There have been horrifying reports. Even in cash rich countries, in well-developed nations, so called developed nations like the U.S.A. where the care taking for older people showed gross neglect. They are the people who could afford care, who paid for it but they are neglected terribly whereby then often died because of malnutrition and other related disease caused by unhygienic conditions, such as bed sores which ate away the flesh and where the bones were revealed in their hip-joints, etc. because the quality of life was denied to them.

They died of malnutrition because old people need time to be able to chew and swallow and the attendants often did not care to wait that long. I cannot think of more cruel insensitive side of human being and our natures if we can go out of our way to do less for such people than to do more for them. Persons with physical disabilities are also seeking equal opportunities, full participation and recognition of their own capacities. They are asking for the right to speak for themselves. And it is to this end that the Disabilities (Protection of Rights) Act of 1995 was enacted. This National Trust Bill is meant to include those with physical disabilities which undermine their ability to take care of themselves. People with disabilities are now fully capable of exercising their rights which were needlessly denied to them earlier.

The Prime Minister has been appealed to add one point and we hope that the Government will be responsive enough. This Bill was first brought in the National Trust Bill form in 1991. It has taken nearly ten years and I think it is befitting that we are bringing this Bill towards the end of this millennium so that we start the new millennium with hope, with care and with good health for all of you.

So, drawing your attention to these few issues, I support this Bill and I congratulate the Minister for having brought this Bill.

SHRI SOMNATH CHATTERJEE : Madam Chairperson, this is an extremely important piece of legislation which is being considered now and I hope it will be passed unanimously. I congratulate the hon. Minister for having brought this Bill. It is better late than never. I also congratulate Shrimati Renuka Chowdhury for a very illuminating speech that she delivered.

SHRI MADHAVRAO SCINDIA : You are in a very chivalrous mood for all the ladies, I think.

SHRI SOMNATH CHATTERJEE : I am lamenting the dearth of ladies. I want 33 per cent of them. Therefore, I would like to continue with chivalry. The only thing is they do not look at me. What can I do?

MR. CHAIRMAN : Do not fish for compliments in the House.

SHRI SOMNATH CHATTERJEE : Madam, at least if I can keep three of you happy, then I shall be happy.

As I said, this is a very welcome Bill. A large number of people who are, unfortunately, afflicted with these diseases, were not within the ambit of the earlier Bill. Of course, we have a lot to say about the implementation of that Bill and what was left out. There was a very strong demand for providing an appropriate legislation.

Why I chose to speak today, Madam, is because some time back I had attended a seminar on disabled persons and what I saw that day - apart from what we see everywhere in the country - and what I heard that day, prompted me to say something out of my own experience. That very day, I had raised the matter on the floor of the House and made a request to the Government of the day to bring forth the legislation at the earliest. A lady saw me there. She had come to that seminar with her son, the only child, who was mentally retarded.

16.00 hrs.

She said that she had never been anywhere except her house and had come to the convention to tell the people, the organisers and the speakers who would be participating to look at her condition and the situation in which she was in. She said : "I have never seen anything in life - no drama, no theatre, no cinema, no social call." Apart from that fact, whatever she has, whatever the family has, they are trying to look after that child who remains a child for ever, unfortunately because of the disease he is suffering from or afflicted with.

Even during the lifetime of the parents it becomes sometimes important to provide protection for them. Therefore, I am a little worried on one thing. The hon. Minister may clarify. I believe that once the hon. Minister has said in her statement that this is not meant for those who have family members. If it is not, it is all right. I am happy. The family members are also affected. Apart from the lack of financial resource, they themselves become almost mental wrecks. Therefore, for proper protection of those people who are suffering from these diseases, something is to be done. Naturally the parents are the most concerned. Even they are not able to look after them properly. Mere best wishes will not do. Therefore, this has to be looked into.

Recently I had a conversation with Shri Javed Abidi whom you must be knowing very well. He said : "Please implore upon the hon. Minister that for every law, it needs to be properly implemented". Implementation should be more sincere. So far as the earlier Act of 1995 is concerned, there is much to be said. It provides for things like education for disabled people - not the aggravated forms of disablement that we are considering in this Bill - but the ordinary disablements like hearing impairment, blindness and things like that. They are mentioned in the 1995 Act. Even those are not being implemented.

There are things like education to them. My friend has rightly referred to the provision for employment which is not at all being implemented. Even the three per cent reservation is only on paper. Although this is a mandatory provision of law, from Government downwards nobody bothers to provide for that. We hear that in China there are so many inducements. Apart from the inducements they are still doing it. Therefore, what was not done was implementation. Mere good wishes and pious wishes will not help.

Therefore, I implore upon the hon. Minister that these are the matters in which the hon. Minister may have to take personal interest so far as monitoring is concerned. If I am not misunderstood in saying so, I know that she is ruthlessly efficient in certain other matters in implementing them. We appreciate that. I appreciate her tenacity also. But what is needed is very faithful, honest, sincere and as the law contemplates, adequate implementation of what we are going to do today and also of the earlier Act.


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