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Legal Issues of Autism in India
India launches an affordable, government sponsored health insurance plan for people with autism, mental disorders and multiple disabilities
The Minister of Social Justice and Empowerment, Smt. Meira Kumar has launched "Nirmaya" a Health Insurance Plan for the welfare of persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities here today. Addressing on the occasion, she said that a large number of persons will benefit from this health insurance plan in terms of getting quality medical services in their respective areas through this scheme. She further said that it is a cashless scheme, under this persons need not pay even a penny for the services offer to them if they are admitted in hospital for an expenditure up to Rs. 1 lakh. Even transport arrangement also has been made for this purpose to reach the hospitals.
The Nirmaya health insurance plan also covers OPD services. The premium of the insurance scheme is paid by the National Trust for the Below Poverty Line persons. The above poverty line persons can also avail this facility by paying the suitable premium, she added. Smt. Meira Kumar announced that the Ministry is launching this health insurance plan in 10 districts on pilot basis; Central Delhi- Delhi, Kaimur- Bihar, Chandigarh-Haryana, Jabalpur-Madhya Pradesh, Agartala-Tripura, Raeareily -UP, Erode-Tamil Nadu, Ernakulam-Kerala, Ahmedabad-Gujarat and Bhageshwar in Uttarakhand.
The Minister distributed photo ID cards to the first 20 specially-abled people. A film on Gyan Prabha Awardees was also shown on the occasion. Smt. Subbulakshmi Jagadeesan, the Minister of State for Social Justice & Empowerment, Smt. Poonam Natarajan, Chairperson of National Trust and Smt. Veena Chhotray, the Secretary of SJ&E were also present in the function.
Under the Income Tax Act, 1961, as amended by Finance Act, 2007, there are tax benefits available to families of children with autism. You must have a certificate of autism in order to qualify for these benefits. In short, the benefits are described here and fall under two sections, as follows:
1) Under 80DD parents/guardians can claim an income tax benefit of Rs.75,000/- which is directly deductable from your income This is available regardless of the amount of expense incurred and documentation of the full amount is not required. A 75% concession in railway tickets for your child and an escort is also available if it is noted in the disability certificate that the child will need an escort every time he or she travels. In addition to the disability certificate, you may need to obtain form 10-1 [under sub rule 92) of rule 11A] from the same hospital that you receive your certificate.
Click here for direct link to website, 80DD, ‘Deduction in respect of maintenance including medical treatment of a dependant who is a person with disability.’
2) Under 80DDB parents/ guardians can claim an income tax benefit of Rs.40,000/-. Documentation of the amount spent is required.Click here for direct link to website, 80DDB, ‘Deduction in respect of medical treatment, etc.’
Banking Made Easier for Persons with Mental Disabilities
On Monday, 19 November 2007, the Reserve Bank of India made it easier for persons with disabilities like autism and cerebral palsy to open and operate accounts, by asking banks to accept guardianship certificates issued by local level committees set up under the National Trust Act. The RBI Notification Banks are advised to rely on the guardianship certificate issued either by the district court under the Mental Health Act or by the local level committees under the National Trust Act for the purposes of opening and operating bank accounts.
Following the RBI directive, local level committees which have been set up in 499 out of 591 districts under the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act will be able to issue valid guardianship certificates. The only state where the local level committees have not been formed is Jammu and Kashmir. The RBI came out with the notification in response to certain issues raised by the Trust such as whether banks can accept the guardianship certificates issued by the local level committees with regard to disabled persons.
Having examined the matter in consultation with the Indian Bank's Association, the RBI said that guardian, for the purpose of opening and operating accounts on the behalf of mentally disabled persons, can also be appointed by the district courts under the provisions of the Mental Health Act. The decision will help thousands of people suffering from autism, cerebral palsy, mental retardation and multiple disabilities open and operate bank accounts through a legal guardian.
India Ratifies UN Convention on Rights of Persons with Disabilities
India was one of the first countries that signed the UN Convention on the Rights of Persons with Disabilities when it opened for signatures and ratification on 31 March 2007 in Washington. The Convention which aims to promote and protect the human rights and fundamental freedoms of those with disabilities as also respect for their inherent dignity had to be ratified by 20 signatories for it to become International Law.
Now, India has ratified the convention. On Monday 1 October 2007, External Affairs Minister Pranab Mukherjee deposited with the UN the instrument of ratification of the Convention on the Rights of Persons with Disabilities. The adoption of the convention "to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity" followed four years of intense negotiations. The convention marks a major step toward changing the perception of disability and ensures that societies recognise that all people must be provided with the opportunities to lead a life to their fullest potential. Disabilities Act will be able to issue valid guardianship certificates.
The only state where the local level committees have not been formed is Jammu and Kashmir. The RBI came out with the notification in response to certain issues raised by the Trust such as whether banks can accept the guardianship certificates issued by the local level committees with regard to disabled persons. Having examined the matter in consultation with the Indian Bank?s Association, the RBI said that guardian, for the purpose of opening and operating accounts on the behalf of mentally disabled persons, can also be appointed by the district courts under the provisions of the Mental Health Act.
The decision will help thousands of people suffering from autism, cerebral palsy, mental retardation and multiple disabilities open and operate bank accounts through a legal guardian.
AFA Submits Letter Regarding Inclusion of Autism in the Disability Act
Following an incident at a Bangalore airport, during which an 11-year old boy was initially denied access to board an aircraft with his parents, AFA drafted a letter to the President, the UPA Chairperson, the PM, and the Minister of Social Justice and Environment. At the time of this event, the parents of the child were informed that since the child was ‘mentally disabled’ he would not be allowed to board under the Aircraft Rules as he would pose a ‘danger’ to other passengers. Later the CISF quoted Section 24A of Aircraft Rule of 1937 states that ‘No person shall knowingly carry or permit to be carried, or connive at the carriage of, a person suffering from any mental disorder or epilepsy in any aircraft.’
Read AFA's response and suggestion that Autism be included in the Disability Act here.
Notification regarding Disability Certificate for
Autism, Cerebral Palsy and Multiple DisabilitiesNotification regarding Disability Certificate for Autism, Cerebral palsy and Multiple Disabilities. The Ministry of Finance has notified the rules for certifying autism, cerebral palsy and multiple disabilities, and has also listed the medical professionals authorized to issue the same, for purposes of Section 80DD and Section 80U of the Income Tax Act 1961.
According to the notification the medical authority for certifying autism, cerebral palsy and multiple disabilities will be a Neurologist having a degree of Doctor of Medicine in Neurology, or a Civil Surgeon or Chief Medical Officer in a Government Hospital.
The format for the certificate will be Form No 10-1A. Some states like Maharashtra, West Bengal and Tamil Nadu were giving Disability Certificates for Autism based on the diagnosis of doctors in Government Hospitals. Once the notification is published in the Gazette of India, it will make it possible for those in other states to get disability certificates as well.
A Good Beginning but the Struggle for Certificates Goes On
Ashwani Chaswal
In the recent finance budget of FY 2004-05Autism has also been included as a disability for which the benefit of income tax rebate U/S 80-DD and US 80 U shall now be available. In this regard the following issues need to be pondered over:
80 DD (with similar retrospect for 80 U) allows for income tax rebate to a person who has a disabled dependent. The amount of deduction allowed is divided into two categories viz. Rs.50, 000 for disability between 40% - 80% and Rs. 75,000 for severe disability above 80%. Norms have been set based on IQ levels to identify the percentage disability in case of mentally retarded dependents. The 'medical authority' to certify such conditions is also defined reasonably well.
In the case of Autism however, while tax exemption up to Rs. 50,000 income can be allowed based on a medical certificate simply certifying 'autism', the definition of severe disability still remains ambiguous. This is because autism certainly cannot be labeled a disability over, or less than, 80% based on the IQ levels of the person with autism.
Above all, any such exemption is possible only after first obtaining a disability certificate that certifies 'autism' and /or the percentage thereof. As per the present status however, even the medical authority to certify the condition of autism is unclear as the same is to be clarified by another central government notification.
It is of utmost importance therefore, that the issue of obtaining disability certificates is addressed as a priority so that the parents, who are otherwise faced with innumerable challenges in life as a result of their children's condition, are able to avail at least the bare minimum concessions allowed by the government.
It is worth a thought whether the tax exemption of Rs. 75,000/- U/S 80 U in case of Mental Retardation or Autism may ever be actually availed by any individual because in both the cases the person himself / herself in that category is unlikely to have that kind of personal income to pay income tax. Even if such a person has some kind of an inherited income, he will in all probabilities be under guardianship, with the finances being managed by the guardian
NOTIFICATION ON DISABILITY CERTIFICATE
Click for full document
Interview with Alok Guha from the Times of India, April 27, 2004
Are the disabled cared for in this country? What hope is there for those among them who don’t have family support? Against this grim perspective, things become all the more challenging for the mentally disabled. People working in this field grapple with such issues and come up with creative responses. One such person is Aloka Guha , chairperson of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. She shares her views with A Srinivas :
How serious is the problem?
There are about 19 million disabled people in this country, according to the latest survey of the National Sample Survey Organisation carried out in July-December 2002. The population of the mentally disabled — comprising mental retardation, cerebral palsy and multiple disabilities — is estimated at 17 per cent of the disabled population and 0.32 per cent of the total population. The mentally retarded constitute 5.37 per cent of the disabled population, while those with cerebral palsy and multiple disabilities account for 1.48 per cent and 10.63 per cent, respectively. Overall, more males are disabled than females.
Where does the trust come in?
The National Trust addresses the problems of those persons with disability, particularly the poor, who do not have family support. Its major programme is to appoint guardians and trustees for persons with disability. The trust also finances NGOs to run permanent care homes, respite care homes and day care services. Permanent care homes are for the disabled who have no support system, whereas respite care homes allow parents or guardians to leave their children or wards for short periods. Day care services are provided at the household level. Over 22,000 disabled persons have benefited as a result of the programmes of the trust. The trust runs awareness programmes for the government and the community on the issue of mental disability.
How does the trust implement its programmes?
The trust runs its programmes through NGOs registered with it as well as local level committees in each district. These committees have three members — the district collector, an NGO representative and a person with disability. The local committees monitor the implementation of the Persons with Disability Act, 1995, which stipulates 3 per cent reservation for the disabled in schools, colleges, jobs and rural employment schemes. They identify the disabled population below the poverty line, so that their guardianship initiatives benefit the disadvantaged sections. The committees implement the supportive guardianship scheme that provides Rs 500 per month in 75 districts for 10 beneficiaries in each district. The rich, after all, have better support systems. Moreover, there have been studies to show that the incidence of disability is more in the poorer sections.
Are these local bodies effective?
Certainly. Thanks to the initiative of some district collectors, particularly in southern states, these committees have done good work. For example, Supriya Sahu has done pioneering work as collector, Nilgiris district. She covered a great number of people under this scheme by displaying an eagerness to implement the objectives of the trust. These bodies also distribute awareness literature prepared by National Trust. They are strong where panchayat raj has taken root. Tamil Nadu has done some remarkable work.
But isn’t the district collector too central to the effectiveness of these local committees? Believe it or not, a number of district collectors have done a lot to bring about a change. They introduce simple austerity measures in their functioning to mobilise funds. Some of them set aside a nominal amount from each of the events and projects undertaken. Today, the government takes disability seriously. The subject is part of the training of officers in the Mussoorie academy. It is, however, true that the process of institutionalisation could take another five years at the district level.
How does the trust visualise providing long-term security to the disabled?
Self-help groups are encouraged as a solution to the security problems of the mentally disabled. Employment does not appear as a realistic option, since the physically disabled are preferred over the mentally disabled. Self-help groups are provided with micro-credit. The district collector coordinates with banks in this matter. We are taking up with the health ministry the issue of treating cerebral palsy as a mental disability. At present, individuals with cerebral palsy suffer discrimination on the job front, as those who are orthopaedically disabled are preferred. Once the former are treated as mentally disabled, although they are not so, they could at least benefit from social security programmes of the trust. We are also planning a Rashtriya Ati Viklang Kosh, under which Rs 250 per month would be provided to 100 beneficiaries in each district.
Do you try to integrate the issue of mental disability with other social problems?
It is not possible to find NGOs working on the issue of disability in each district. For instance, NGOs working on women’s issues may be on a local level committee. In the process, they are able to integrate mental disability with other social issues
PIL for autism
Reported in the Times of India
NEW DELHI : A public interest litigation (PIL) was filed before Delhi High Court on Thursday, seeking directions to various government agencies to extend disability benefits to autistic persons.
Chief justice B C Patel and justice A K Sikri issued notices to the two Union ministries. BThe Delhi government too has been asked to reply to the PIL.
The respondents have been asked to file their replies by December 10.
August 2001 Legislation for the Most Marginalised
Aloka Guha, Chairperson, National TrustMahatma Gandhi has said: "Be The Change, You want to see, In the World"
The National Trust aims at being that change. The National Trust for Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability was enacted by Parliament into law in December 1999.
Its Objectives are:
o To enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong;
o To strengthen facilities to provide support to persons with disability to live within their own families;
o To extend support to registered organizations to provide need based services during the period of crisis in the family of persons with disability.
o To deal with problems of persons with disability who do not have family support;
o To promote measures for the care and protection of persons with disability in the event of death of their parent or guardian;
o To evolve procedure for the appointment of guardians and trustees for persons with disability requiring such protection;
o To facilitate the realization of equal opportunities , protection of rights and full participation of persons with disability; and
o To do any other act which is incidental to the aforesaid objectsThe Board seeks to Implement the Objectives through:
1. Registered Organisations
2. Government Departments and Local Bodies
3. Grassroot wings of the National Trust i.e., the Local Level Committee at the district levelThe Local Level Committee consists of:
a. An officer of the civil service of the Union of the State, not below the rank of a District Magistrate or a District Commissioner of a district
b. A representative of a registered organization; and
c. A person with disability as defined in clause [t] of section 2 of the Persons with Disabilities [Equal Opportunities, Protection of Rights and Full Participation] Act, 1995.In order to co-ordinate and facilitate the activities at the State level, each State Government has nominated a State Level Co-ordinator. In West Bengal, the Commissioner, Disabilities has been designated the State Coordinator.
In West Bengal so far, out of 16 districts, 17 [including Calcutta city] Local Level Committees have been formed. West Bengal was the first State, apart from Tripura, to form Local Level Committees in all districts barring one.
The Role and Scope of the Local Level Committee:
The Primary role of the Local Level Committee is in coordinating, initiating, protecting the rights and promoting the interests of persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities as per the National Trust Act, its rules and regulations and as per directions given by the National Trust of the National Trust Act from time to time. This includes:
a. Awareness Generation and Interactions on the National Trust Act, the rights of persons with these four disabilities, needs, problems and preferred solutions of the local population of persons with these four disabilities and their families, schemes, programmes, of the National Trust that are formulated from time to time.
b. Works related to Guardianship of persons with these four disabilities i.e., receipt and processing of application, appointment of guardian, monitoring and evaluation of guardianship, removal, if necessary, of guardianship as per the Rules and Regulations, and reporting to the National Trust.
c. Implementation, Monitoring and Coordination of schemes/programmes/initiatives of the National Trust as per directions of the National Trust given from time to time.
d. Promoting the interests of persons with these four disabilities through facilitation of convergence
e. Taking proactive initiatives and measures that concern the local problems /needs of persons with four disabilities and their families
f. Liason with local leaders, Panchayat members, government personnel, representative of NGOs, family and community members for the furtherance of the objectives of the National Trust.Scope:
The primary activities are related to Guardianship issues, Caregivers Training and Development of Services in day care, Respite and Residential care. Apart from these the scope of the Local Level Committee may include a continuum of activities starting with primary awareness creation, campaign on causes of disability, service needs and provisions, inclusive education, promotion of
positive health, skill development, job training, marriage and social inclusion, rights awareness, family support, and any other issue/ concern/ activity/ interest which helps to translate the objectives of the National Trust into action at the Local Level - with the prior permission of theNational Trust.Schemes:
Two Schemes of the National Trust are under the broad Relief and Reach programme for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. One is for the Establishment of Relief Institutions for providing institutional care; and the other is for Training of Caregivers. Both the schemes have got the Administrative SFC approval from the Ministry recently.Activities to date:
1. Seventy one LLCs have been formed in seventy one districts - ten states and two union territories.
2. 266 applications from voluntary organisations, of which 166 have been registered. Of these ten are parent organisations.
3. Convergent programmes are under planning for disabled senior citizens, disabled children and adolescents, and for parent groups through NISD, ICDS, RCI, NPRRD, CRC and GPY.
4. The formation and conducting of Five Standing Committees on:
a) Media,
b) Evaluation, Monitoring & Documentation,
c) Programme, Planning and Implementation,
d) Finance and
e) Legal.
5. Awareness Generation Programme by Chairperson and CEO and Board Members in Mumbai, Pune, Karnataka, Ahmedabad, West Bengal, Andhra Pradesh (by end September there will be programmes in Madhya Pradesh, Uttar Pradesh, Rajasthan, Assam, Meghalaya, Tripura, Nagaland, Tamilnadu, Kerala and Pondicherry).Priorities right now:
o To have functioning Local Level Committees in every State and Union Territory
o To implement the schemes - have home-based caregivers and rehabilitation services for people with these four disabilities
o To have more registrations of voluntary organizations
o To help to form more Parents Associations.The National Trust is a new initiative. It is also a very challenging one. For the first time ever, the interests of these four disabilities are being served through legislation specifically designed for them. Join us in this national movement and become a stakeholder in the realization of dreams.
The National Trust helps you to: hope, trust, care, build, and dream... more than others consider it possible.
THE ORGANIZATIONAL STRUCTURE OF THE BOARD
Standing Chairperson
CommitteesConsultants Board of Trustees JS/CEO
and/or Advisors OfficeGuardianships
Issues Local Level Committees
Advocacy Registration Accreditation Awareness
Rights AdministrationServices/
Programmes Persons with Disabilities and their Families
Self Help Groups
December 2000
Disability & Census 2001
Rama Chari
National Centre for Promotion of Employment for Disabled People
Member, Disabled Rights Group (DRG)India is one of the few countries that conducts Census every ten years. The irony is that despite this we do not have authentic statistics on the population of disabled people in our country. Comparing official figures of the disabled population in various Asian countries: India 1.9% (Source: NSSO Survey 1991) China 5%, Pakistan 4.9%, Philippines 4.4%, Nepal 5.0% - one would imagine that we have eradicated disability completely from the country!
In the Ninth Five-Year Plan (1997 - 2002), the Planning Commission had categorically stated that, "to ensure planning for the welfare and development of the disabled more meaningfully, there is an impending need for the Office of the Registrar General and Census Commissioner, to revive their practice of 1981 Census to collect the data on the size of the population of persons with various types of disabilities and to make it available through the next Population Census of 2001 AD."
The Census allows statistics on persons with disabilities to be analysed by a wide range of variables such as age, marital status, income, labour force status, family status and then compared with the results for the total population. Further, the Census can give estimates for small areas and small populations, which is usually not possible in Sample Surveys because of size limitations. No doubt the Census may have problems with under-estimation of persons with disabilities, particularly with mild disability and children and older persons with disabilities. However, while analyzing the data, this can be taken into account to provide baseline information on frequency and distribution of disability in the population: essential for policy planning and fund allocation. Data obtained in the Census can then be utilized for the development of representative surveys and studies where more detailed information can be collected on persons with disabilities. The data could be used to reduce the disadvantage inherent in the limited sample size of sample surveys. The ideal approach would be to use the Population Census as a screening device and then use it to improve the efficiency of the sample selection in a Sample Survey.
However, our Census Commission was not even considering the inclusion of disability as a category in the Census 2001. Interestingly, the first Indian Census of 1872 included questions not only on the physically disabled but also on the intellectually disabled! The practice was discontinued in 1931. Thereafter only once in 1981, the International Year for Disabled Persons was an attempt was made to collect information on disabled persons under the Census! This practice was once again discontinued in 1991. No one saw fit to question this move. The DRG wrote to the Census Commissioner, as well as to the President, Prime Minister, Leader of the Opposition, Home Minister, among others, explaining the need and importance of the issue. We contacted NGOs, disabled people and politicians, appealing to them to protest strongly against this omission of the Census Commission.
Shri Arun Shourie initiated a meeting on 18 February 2000 with the Census Commissioner to discuss issues related to the inclusion of disability in Census 2001. However the Commisioner asserted that:
1. The Census on disability that was conducted in 1981 did not give a correct estimate of disabled people in our country for which the Census Commission was held responsible, which justified the current stand.
2. The Enumerators find it difficult to elicit information from the respondents regarding the type of disability, etc.
3. People with disabilities and their families will anyway hide their disability because of the social stigma attached.
The very wording of the 1981 Questionnaire is illustrative of its shortcomings, not only listing the 'totally crippled, totally blind, and totally dumb', (indicative of awareness levels at the time) but excluding completely hearing impairment, mental impairment, and partial disablement. Rather than excluding disability from its agenda the Commission should consider removing these shortcomings. As for the difficulty in gathering information, the Ministry of Social Justice and Empowerment had given the assurance that it would take the responsibility of training and sensitising the Enumerators. To address the third argument, there is social stigma attached to caste, religion and even gender, yet questions on these issues are not excluded.
The alternative offered by the Census Commissioner was a Sample Survey! DRG argued that there was simply no justification for an Either/Or approach. Population Census and Sample Surveys are complementary to each other. You first get the raw data with the help of the Census and then refine it with the help of Sample Surveys.
When the Census Commissioner remained unmoved the battle was taken to the media, the Parliament and the public. A Public Rally was organised, followed by a day-long Dharna and a planned Nation-Wide Dharna!
A day before the proposed day-long Dharna, the Home Minister's office called the DRG to a meeting to discuss this issue under the chairpersonship of Shri L.K. Advani himself. The Draft Questionnaire of the upcoming Census, brought along by the Census Commissioner, showed a total of 26 questions. These include items such as whether one is a Vegetarian or not. Non-Vegetarians were further asked whether they ate duck or chicken?!! Shri Shourie, who is also a parent of a disabled person, asked the members present, "Are these questions more important than asking whether my child is disabled or not?" Shri L.K. Advani assured the DRG team that the issue would be resolved. An informal Committee was constituted that met the very next day and drafted its recommendations. The recommendations were then presented to the Home Ministry for its final approval. Finally, on 11 June, the Government made an official announcement that disability has been included in Census 2001.
Statistics emerging from Census 2001 will bear directly on policy planning, resource allocation and the well being of 70 million disabled citizens of our country! If we do not play our role effectively, we will have to wait another ten years for a correct figure regarding the disabled population in our country. We therefore appeal to all well-wishers of the disability sector to take up the challenge and ensure that the message trickles down, so that that the maximum number of disabled people are accounted for when the actual Census takes place all over the country, from 9 to 28 February 2001.
January 2000
The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999
Link to Full Act
Gen. Ian CardozaA Brief Review:
1. The benchmark of good governance is the welfare of it's People, Politics, Economics, National Security and Social Justice. All need to work in harmony to ensure the average citizen has the basic essentials for normal living. More than that, every citizen needs to be assured that he/ she is protected by the society in which he/she lives and that he/ she has equal opportunity to access the means that ensure a just and meaningful life.2. This is all the more important for persons with disability. Disadvantaged as they are, they need to know not only that they are equal citizens of this great country but also that society will ensure that they can function from an equal playing field when issues of education, employment, welfare, community living, justice and other aspects of daily living are concerned.
3. Society also needs to know that the disabled are equal citizens of this country, that their rights have to be respected and ensured, and that any rule, policy or scheme which infringes the fundamental rights of the disabled are violative of the Indian Constitution and are therefore null and void.
4. Society, however, well meaning it may be, sometimes fails to ensure that the disabled are treated as equal citizens and over a period of time, the disabled have learnt to move from an environment of 'expectation' to an environment of rights.
5. This has resulted in the institution of two Acts promulgated by the Government of India, these are:
a. The Persons with Disabilities (Equal Opportunities, Protection of Rights, and Full Participation) Act, 1995, and
b. The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. (National Trust Act, 1999)
6. Both these Acts seek to make the word more friendly to the disabled. The National Trust Act, 1999 focuses on the provision for a body at the national level for the welfare of persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities and with matters connected with them.
Objectives of the Trust
The objectives of the Trust are:
a. To enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong.b. To strengthen facilities to provide support to persons with disability to live within their own families.
c. To extend support to registered organisations to provide need-based services during the period of crisis in the family of persons with disability.
d. To deal with problems of persons with disability who do not have family support.
e. To promote measures for the care and protection of persons with disability in the event of death of their parent or guardian.
f. To evolve procedures for the appointment of guardians and trustees for persons with disability requiring such protection.
g. To facilitate the realisation of equal opportunities, protection of rights and full participation of persons with disability.
h. To do any other act which is incidental to the aforesaid objects.
Composition of the Board
The Board shall consist of:
a. A Chairperson to be appointed by the Central Government from amongst persons having expertise and experience in the field of autism, cerebral palsy, mental retardation and multiple disability.b. Nine persons to be appointed in accordance with such procedure as may be prescribed from amongst the registered organisations out of which three members each shall be from voluntary organisations, association of parents of persons with autism, cerebral palsy, mental retardation and multidisability and from association of persons with disability.
c. Eight persons not below the rank of Joint Secretary to the Government of India nominated by the Government to represent the Ministries or Departments of Social Justice & Empowerment, Women and Child Development, Health & Family Welfare, Finance, Labour, Education, Urban Affairs & Employment and Rural Employment and Poverty Alleviation, Members, ex officio.
d. Three persons to be nominated by the Board representing the Associations of Trade, Commerce and Industry engaged in philanthropic activities.e. The Chief Executive Officer, who shall be of the rank of Joint Secretary to the Government of India, member-Secretary, ex officio.
f. The Board may associate with itself, in such a manner and for such purposes as may be determined by regulations, any person whose assistance or advice it may desire for carrying out the objects of the Trust.
Powers & Duties of the Board
The Board shall:
a. Receive from the Central Government a one-time contribution of rupees one hundred crores for a corpus, the income of which shall be utilised to provide for adequate standard of living for persons with disability.b. Receive bequests of movable property from any persons for the benefit of the persons with disability in general and for furtherance of the objectives of the Trust in particular: Provided that it shall be obligatory on the part of the Board to make arrangements for adequate standard of living for the beneficiary named in the bequest, if any, and to utilise the property bequeathed for any other purpose for which the bequest has been made:
Provided further that the Board shall not be under any obligation to utilise the entire amount mentioned in the bequest for the exclusive benefit of the persons with disability named as beneficiary in the bequest.c. Receive from the Central Government such sums as may be considered necessary in each financial year for providing financial assistance to registered organisations for carrying out any approved programme.
Programmes likely to be approved by the Board
a. Any programme which promotes independent living in the community for persons with disability by:
o Creating a conducive environment in the community;
o Counselling and training of family members of persons with disability;
o Setting up of adult training units, individual and group homes;b. Any programme which promotes respite care, foster family
care or day care service for persons with disability;c. Setting up of residential hostels and residential homes for persons with disability;
d. Development of self-help groups of persons with disability to pursue the realisation of their rights;
e. Setting up of local level committee to grant approval for guardianship; andf. Such other programs which promote the objectives of the Trust.
Note: While earmarking funds for the purposes of clause © of sub-section (2), preference shall be given to women with disability or to persons with severe disability and to senior citizens with disability.
Procedure for Registration
1. Any association of persons with disability, or any association of parents of persons with disability or a voluntary organisation whose main object is promotion of welfare of persons with disability may make an application for registration to the Board.2. An application for registration shall be made in such form and manner and at such place as the Board may be regulation provide and shall contain such particulars and accompanied with such documents and such fees as may be provided in the regulations.
3. On receipt of application for registration, the Board may make such enquiries as it thinks fit in respect of genuineness of the application and correctness of any particulars thereon.
4. Upon receipt of such application the Board shall either grant registration to the applicant or reject such application for reasons to be recorded in writing.
Local Level Committees
A local level committee shall consist of:
a. An officer of the civil service of the Union or of the State, not below the rank of a District Magistrate or a District Commissioner of District;b. A representative of a registered organisation; and
c. A person with disability as defined in clause (1) of section 2 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.
The National Trust Act, it is hoped, will attempt to solve the persistent fear in most parents of children with autism, cerebral palsy, mental retardation and multiple disability as to what would happen to their wards once they died. The National Trust Act as we have seen not only addresses the issue of the appointment of guardians but also sets up mechanisms that monitors and ensures their proper functioning particularly with regard to how they deal with properties bequeathed by parents for the welfare of their wards.
The Government of India has made the right start. It is hoped that policies, rules and procedures will soon follow. It will no doubt take a little time however, it is up to us to ensure that the momentum that we started continues in the right direction as otherwise the Act would only remain a piece of paper.
December 1999
On the legal front, the Executive Director of AFA was appointed on the Committee to suggest Amendments to the Persons with Disabilities Act by the Ministry of Social Justice and Empowerment. After a series of meetings and consultations the final draft, which includes autism, was submitted to the Ministry earlier this year. We await eagerly the results of that. The Bill for the National Trust for Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities is to be tabled in Parliament. AFA had lobbied hard to have autism included in what was the Bill for the National Trust for Mental Retardation and Cerebral Palsy. With the passge of the Bill, Action for Autism will have succeeded in effecting the inclusion of autism as a disability for the first time in a national legislation.
April, 1999
Persons with Disabilities Act In August 1998 the Ministry of Social Justice and Empowerment constituted a Committee to suggest amendments to the Persons with Disabilities Act. The Committee, comprising of the Chairperson Dr Amita Dhanda and members JP Gadkari, Aloka Guha, Dr DK Menon, R Ramachandran, SK Rungta, Surrendar Saini, and Merry Barua, was directed to review provisions of the PD Act and suggest suitable amendments in the existing provision, or new provisions, in order to cover the requirements of the disabilities sector; as well as any other issue considered appropriate. In this task the Committee was asked to consult with State governments, Union Territories Administrations as well as major non-governmental agencies before finalising the recommendations.
In order to make the effort as consultative and participative as possible, a flexible time frame, giving the committee time to complete its task at the earliest without compromising on the quality of the work, was decided on. Members of the committee wrote to their contacts and associates inviting responses on various provisions of the act. The Committee drafted 71 pointed questions on the key areas covered by the statute. The questions were shared with other experts for further inputs and also forwarded to the Ministry to obtain feedback from Central Ministries/Departments, State Governments and Union Territories. Based on all these inputs the Drafting Committee consisting of Dr Amita Dhanda and Mr Santosh K Rungta prepared an interim report that was submitted to to the Ministry of Social Justice and Empowerment.
The draft proposals were also sent to legal, financial, and medical experts, to seek feedback on specific sections of the Act. Four regional consultations were held on the draft proposals with the endeavour to make the consultations as disability and region representative as possible. Based on the inputs from all these diverse sources the drafting Committee worked out a report, which was finalised by the committee at its ultimate meeting on 3 and 4 of March.
While the final report of the Amendments Committee is now with the Ministry, all those who participated in the Consultation can access copies of the report, by writing to Action for Autism member Merry Barua or any other member of the Amendments Committee.
Income Tax Relief U/S 80DD for Parents/Guardians of
Persons with Disabilities
Ashwani Chaswal
Till the financial year 1997-98, deduction of Rs. 15,000/- was allowed U/S 80DD and deduction to the extent of Rs. 20,000/- was allowed U/S 80 DDA. Vide Finance Act 1998, section 80DD was substituted for both sections 80DD and 80DDA and deduction was specified up to a 'limit' of Rs. 40,000/-.
However, because of the language of the Act and the word `limit' appearing in it, the various offices were asking for actual vouchers/bills for medical expenses incurred towards the handicapped dependant, for allowing Tax deduction at source to the Parent/Guardians.
Realising the difficulties involved in producing such vouchers/bills, a group of parents met top Govt. officials like Mr. D.K. Manvalan (Secy. Ministry of Welfare), Mr. Ravi Kant (Chairman-Central Board of Direct Taxes) and Mr. G.C. Srivastava (H. Secy. Ministry of Finance) and explained the issue in details.
Thanks to the concerned officials that a prompt action has been taken and the issue has been resolved once & for all. Vide circular no.775 dated 26 March 1999 from Ministry of Finance, it has been clarified that for availing Income Tax deduction U/S 80DD, the employees are required only to furnish a medical certificate from a Government Hospital certifying the disability of the dependent and a self declaration certifying the expenditure incurred on account of medical treatment (including nursing), training and rehabilitation of the handicapped dependant. Actual receipts shall be required only in case the employee seeks deduction on account of deposits made in specified schemes of LIC or UTI.This shall be applicable for the financial year 1998-99 and onwards.