Madam, I will make one or two comments. I do not want to make it a controversial law. It may be considered now. I have not given any amendments. The Board as provided may be too large. There is a chairperson. There will be nine persons representing parents and eight persons from high bureaucratic level officials and three persons for philanthropic activities. Apart from that there will be a Chief Executive Officer who will again be a bureaucrat of the rank of Joint Secretary. Then there will be another eight persons who may be associated. It becomes a total of 30 persons.

I think, it is too large a Board. I have been told of another Council, but I will not name it. I will not name the individual who is more busy publishing his photographs. Madam Chairperson, you must be knowing him. Somebody says that he is more busy publishing booklets with his photographs as beautifully made out as can be. But that is not helping the work. The work is not helped. Some of the people who are aware, who are working in this sphere say that Rs. 100 crore for a country like ours where seven crore of people are disabled, in these days of escalating costs, will not be sufficient.

I do not know whether the hon. Minister's Ministry has made a study about how many homes they should start in the country, what is the number of people they wish to accommodate in those sheltered homes and what will be the per head expenditure. Therefore, will this amount of Rs. 100 crore kept in deposit and probably Rs. 10 crore of money earned every year, cannot be sufficient for this stupendous task. The amount that may be given by individuals will be meant for those persons or their wards. Therefore, I would request the hon. Minister to consider this. If necessary, she may come with amendments at a suitable time.

The more important thing is the persons who feel most are the parents and the family members of the disabled. There are good organisations. Even there is an organisation called National Federation of Parents Association. It is felt that the representation of the parents and the members of the family of the disabled should be more compared to others. I have nothing per se against the bureaucrats, but somehow that bureaucratic attitude is taken up. They have to look into so many rules, regulations and procedure. Even if they want to overcome it, there will be too many inhibitions, either mental or procedural, which will affect the functioning of this Trust board.

Who are going to be made associates? It is there in clause 3(5). The hon. Minister must have noticed that professionals are contemplated to be associated. They may be taken out of the registered organisations or of professionals. Therefore, professionals by profession means, probably, doctors and others who are looking after these persons. Therefore, I would have preferred more representation of parents, experts and professionals. Of course, some philanthropic organisations may be there. I am sure that the Minister will consider, after a trial is given, whether to change it or not.

But let it not be an organisation just like those which remained only to provide for paraphernalia of the Chairperson, Chief Executive, officers, cars and travelling. Let this good money not be utilised or misutilised for that.

The other thing I wanted to say about this Bill is about the objects of the Trust. The Bill says that the objects of the Trust are to strengthen facilities to provide support to persons with disability to live with their own families and to extend support to the registered organisations to provide need-based services during the period of crisis in a family of persons with disability. Now, both these areas have to be very seriously looked into because, as I said, those who live in the family need help, apart from the guardians, which has been provided here. How can such help be rendered to the families? That is a matter which has to be very seriously looked into. The other thing is the local-level committee which is the most important committee.

The Local Level Committee, under Chapter 6, will select the persons who, according to them, will be entitled to the assistance of guardians etc. That Local Level Committee, Madam, if you kindly see clause 13, consists of an officer of the Civil Service, not below the rank of a District Magistrate or a District Commissioner of a District, then one representative of a registered organisation, and a person with a disability, as defined in clause (t) of Section 2 of the other Act. Now, I have some doubts about the utility of this because we do not know whose interests the registered organisation represents or it comprises of what. As Shrimati Chowdhury correctly said, these particular types of diseases are different from ordinary impairment, ordinary disability; as I said, they are aggravated forms of disability, and the people with these particular types of diseases must be properly represented. Supposing a blind person is there, it does not necessarily mean, in spite of his best efforts, that he can do this.

As far as the Collectors are concerned, again, this bureaucratic approach is there. I am not per se against the Collectors or the District Magistrates, but this is a matter which has to be tackled differently from a different point of view. Therefore, I do not know why these Local Level Committees should be comprised of three persons. One may not have any connection with this, the other is just giving a bureaucratic sort of leadership, and the third is an organisation's representative -- it may not be of a parents' organisation. These are the doubts which have been expressed by those who are working in this area. I cannot ask for change of the law here and now, unless she brings an amendment today.

Now, there is a provision for appointment of guardians. Will they be honorary persons? If not, then a provision has to be made for their payment. I do not find it here, and that has to be adequate. The Minister is shaking her head and, therefore, I think, they will be paid. In that case, that has to be adequate. Do not just indulge in tokenism; that would be neither here nor there. We are trying to make some suggestions to make this Bill as better workable as possible. Therefore, this is a matter which may please be looked into.

I will not take more time. The last point is, the Board has been given the power to receive bequests only on movable property. Supposing a family gives a house, either you can convert it to a home or you can sell it. Why do you compel the family to sell it and give it to you? Why not receive bequests of immovable property also from any person for the benefit of persons with disability? This is a matter which may be looked into.

Madam, I am reading one or two sentences of a letter which a mother has written to the Prime Minister.

"Myself and my husband have been struggling to provide education, vocational training and an occupation to my son. Our aim is to provide him with the normal facilities, opportunities, the avenues of life, which are available to the other citizens of this country ..." (Very deserving thought.)

She says:

"We want an answer to the all pervading question, "After us, who?"

This answer has to be given to the parents of persons with mental retardation, cerebral palsy and autism for whom sheltered homes are being set up with funds being provided by the Government to the National Trust and donations collected by it. Therefore, this is a question which is perennial in the minds of the people of those, whose children, unfortunately, are suffering from these diseases. However, with great difficulty, I may carry on to look after them. But after me, what will happen and who will look after them"

These are matters which have to be looked into. I know, no such law could be properly implemented without an attitude of care, compassion, love and concern for these people. Merely we have passed a law, and it would be one of those laws which would remain in the Statute book. Money would be provided but how far would it go to those who really need them?

I express my hope and faith that the hon. Minister would see that this law is not a mere paper provision. It should be implemented and I am sure, with the zeal for protection of those who need protection, this would be a legislation which, we all shall be happy to have it not only in the statute book but also to see that it is properly implemented.

SHRIMATI RENUKA CHOWDHURY (KHAMMAM): Madam, Chairperson, may I just make a suggestion?

An hon. Member was telling me that when he tried to give money to one of the Centres, from the MPLADS, who look after these children, he was not allowed on the ground that this was not within this scheme. We should work collectively towards that to change this. I would rather fund an institute than to give a borewell or something like that.

Madam, the other thing about which I would like to draw the attention of the hon. Minister is Alzheimer. Alzheimer is a mental incapacity that comes with the onset of age. India has not woken up to this fact. Alzheimer is very much there in India, especially given the longevity of life. Would the hon. Minister include Alzheimer also under the purview of the Bill so that we could look after them?

MR. CHAIRMAN : Next speaker is Smt. Jayashree Banerjee not present.

Shri Anadi Charan Sahu.

SHRI ANADI SAHU (BERHAMPUR, ORISSA): When I rise to support this Bill, Madam, Chairperson, I am reminded of a strange coincidence. When you were the hon. Minister of State for Youth Affairs at the Centre, I was the Director (Sports and Youth Services, Government of Orissa. You were then kind enough to sanction money for organising an athletic meet for the disabled persons, including those who are mentally retarded.

Madam, I would like to cite one instance here which has remained poignant and elected to my mind. This is about a 14 year old mentally-retarded boy who was brought by his parents from Bolangir to participate in that athletic meet. It was a very simple athletic meet which was conducted with the help of the doctors. There were only jumping, running and throwing events in that meet. Amongst all those mentally-retarded children, that boy was distinguished by good clothes and by the fact that his parents were hovering around him.

That boy, in the running event, got the first prize. His mother started crying in joy and this boy -- although he was 14 years old was behaving like a two year old child -- went to his mother and kissed and hugged her and threw the prize up in the air in joy. His father was a mute spectator to all this and was crying but laughing as well. That incident has remained elected in my mind and it is a strange coincidence that I am narrating this here again.

Madam, this Bill is a very good Bill and has been brought with a good purpose as well. Right from the year 1991 when it was thought of giving equal rights to the disabled, India has been thinking of the incapacitated. In 1994, there was a Convention in Delhi and on the basis of that Convention, the Act of 1995 relating to the mentally-retarded persons was drafted which became an Act in 1996. The most important fact in that Act was about education and employment. As Shri Somnath Chatterjee has said, we have enacted an Act but we have not yet implemented it fully.

Madam, Chairperson, there are lofty ideals in the Bill. Madam Minister has lofty ideals, but to be able to implement it, there must be some good people with understanding of the problem that has to be tackled. This Act, as has been mentioned by Smt. Renuka Chowdhary proposes to give a new definition and an attempt has been made to define the ailments.

The objective is to instill a sense of purpose in the parents who brought a child to this world. That is the most important thing. Let them not feel, in the poetic words, "Tell me not in mournful numbers life is but an empty dream." Each child who has come to the earth should feel happy and should feel that he is among equals. He may not be better placed but the purpose is to prevent any sort of discrimination against him, to protect and promote his rights, and to develop and safeguard the interest of the disabled.

The difficulty is that there is a plethora of Acts. In 1965 Act, Section 3 has the provision of a Board. It has provision for some District and local level Committees also. The present also has provision of Boards in Clause 3 and then District level Committees at clause 13. As per the 1995 Act, there is a set of Boards. As per this Act, one will have another set of Boards. It may create problems, as Shri Somnath Chatterjee was saying. We have created a corpus of Rs.100 crore for this but to man the Boards also the corpus may be eaten away.

There is a provision in Clause 10 of this Act which, inter alia, could mean that funds could be given to the guardian. If we read through the lines, we can find that it is there. A regulation has to be made as to the manner in which funds have to be given to the guardian. Otherwise, it would be difficult to implement. There is another provision in Clause 17 which says that if the guardian is not taking any steps, the child, the patient, or the disabled person, is to be taken out. A difficulty may arise here because there is no penal provision. Supposing there is some inter-State property, if the disabled person has been taken away or dies, how is that property to be recovered? An important fact is that nobody is an ideal person. Maybe, Madam Minister is very ideal in her thinking but the persons who will be implementing the law may think of taking the money. Therefore, the first important thing for this provision is that the Public Demands Recovery Act has to be taken into account. There may be many people with ulterior motives, who would like to misappropriate funds. Implicitly, why not give the responsibility with the financial support, as it has been indicated in Clause 14, saying that the parents themselves should be the guardians? Why appoint another person as guardian? These are a few things which should be sorted out.

As Shri Somnath Chatterjee has said, the Boards should not be very big in their size comprising 29-30 people. Academicians and medical officers should form part of the Board which has not been indicated in the Bill. At the District level Committee, the District Magistrate cannot do anything. With my experience in District administration, I know that a District Magistrate is the chairperson of sixty to seventy Committees. He does nothing except sitting over the Committees. At times, the District Magistrate does not even know for what purpose the Committee he is chairing is constituted.

If it is possible, now of course it cannot be amended, it should be provided that the Chief District Medical Officer should be the Chairman of the Committee with some academicians and professionals as members. As Shri Somnath Chatterjee has said, if they can be taken into this Committee it would be possible to give some thrust to the objective the Minister has thought of. Otherwise, it would be better to have family support. It would be better to give some money to the family and see that they take up the activities of these mentally retarded people, in right earnest.

It is possible. If you have a better atmosphere for them, they could do wonders. This has been clearly indicated in the London Charter which Madam Minister had attended probably, in September, 99. The Draft Charter of Disability for the Third Millennium finalized in London calls for compassionate policy that respects the dignity of all people, and the inherent plans and benefits derived from the varied diversity of people. This is the main thrust on which this Act has come.

I would not dilate much. I would not go into the details of other things. So, what are the requirements? They are adequate genetic services to alleviate the physical and psychological impairments caused by the inescapable ravages of environment. That can be done if the parents are involved, and not the guardians. I do not know how a guardian would be able to take care of a person who is mentally retarded and requires lots of affection. By merely enacting or by making some people a registered body, we cannot implement this Act in a better manner.

So, although I support it, I would request that while finalizing the rules and regulations, kindly keep all these things in mind. With these words, I conclude. Thank you.


HHon. Members, there is a statement to be made by Minister at 4.30 p.m. So, the next speaker would be disturbed in between in his speech. Or she can finish her speech before the Statement is made.

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