Thursday, December 22, 2005
Petition to Ministry of Human Resources and Development
Hello Readers !
Below is attached the letter what we wrote to MHRD , India and took several hundred signatures while we did the "Walk for Autism" at Dadar , Mumbai.
Govt. of India has got enough time to press for reservation of SC/ST/OBC in the private education institute of our country through the Education Amendment Bill , but has little time to think about the most weaker sections of the society as they may not be able to contribute in terms of vote banks.
Keep reading.................................
****************************************************************
20th November, 2005
To
Mr. Arjun Singh
Minister for Human Resource Development
Government of India
New Delhi.
Dear Sir,
Forum for Autism is a parent support group registered under the Indian Trust Act, 1950 for persons with autism and comprises of parents, caregivers, Individuals with autism and professionals from various fields who deal with autism. We have gathered here at Shivaji Park, Mumbai, on the 20th of November 2005 for awareness walk on autism organized by Forum for Autism. On this occasion, we wish to press for the following demands, which would enhance the dignity and quality of life of individuals with autism and their families –
1.Recognize Autism as a disability and include it under the Persons with Disabilities Act.
Today, even though the National Trust recognizes autism as a disability, the Persons with Disabilities Act, which includes persons with mental retardation and/or physical handicaps, does not recognize autism as a disability. Although many people with autism do suffer from other disabilities mentioned in the Act, it is a known fact that they are often of normal and above normal intelligence, yet cannot lead an independent life due to this being a socio-communicative disorder. Such persons with autism cannot avail of the facilities, reservations and other concessions, which are available to persons covered by the Persons with Disabilities Act.
2. Include and integrate all children with any special needs, specifically autism, in schools (both Special Schools and mainstream schools).
The Government launched the IEDC [Integrated Education of Disabled Children] scheme in December 1974. However, educational administrators have been slow in grasping the value of Integrated Education (IE). IEDC met with limited success only a little more than one lakh CWSN [Children With Special Needs] have been covered. We must understand that Special needs people are an integral part of any society.
When the process of integration starts at young age, at the school level, both special persons and others / peers emerge as more complete human beings who are better equipped to face the ups and downs of life together. Only by such a process can special needs persons be truly integrated into society as adults.
3. Extension of concession for students with autism while appearing for the board examinations
Suitable concession may be extended after deciding the same through consensus approach similar to those allowed for students having dyslexia, learning disability and so on. The concession may be in the form of allowance of more time, exemptions of certain subjects, exemptions from answering subjective answers as well as concession of marks for passing etc. The aide may also be allowed to sit along with the students in the same manner to the amanuensis being allowed for LD, Dyslexic students.
4. Setting up Vocational Centers, Residential Home and Reservation of Jobs for Individuals with Autism.
A) Suitable policies and requisite funds must be created by central government including formation of Inter ministerial group (IMG) may be formed involving Ministry of Education, Ministry of Health, Ministry of Finance and Ministry of Law so as to address the issues relating to Vocational Centers, Residential Homes and to bring necessary legislation for that purpose. The National Trust Act, 1999 should be given more powers to address various issues that will help people with autism to live with respect and dignity in our society.
B) Inter ministerial group (IMG) as mentioned above must also formulate policies to assist the Parents Support Groups ( PSGs ) to set up Vocational Training Centers (VTCs ), Residential Home (RH) and implement the jobs reservation for Individuals with Autism in to the public as well as private enterprises for all ilk of employment sector.
The four demands, although simple, will go a long way in promoting the cause of persons with autism in India and in providing them a life of dignity and self esteem which is the birthright of any Indian. We trust that you will put your capacities to use and fulfill them.
Thank you,
Sincerely,
Sd/-
Parul Kumtha
(President)
Mumbai, India.
Date: 20th Nov. 2005
cc : Dr. Manmohan Singh , Prime Minister , India
cc : Ms Sonia Gandhi , President All India Congress Party, India
cc : Dr. A.P.J.Abdul Kalam , President , India
*******************************************************************************
Below is attached the letter what we wrote to MHRD , India and took several hundred signatures while we did the "Walk for Autism" at Dadar , Mumbai.
Govt. of India has got enough time to press for reservation of SC/ST/OBC in the private education institute of our country through the Education Amendment Bill , but has little time to think about the most weaker sections of the society as they may not be able to contribute in terms of vote banks.
Keep reading.................................
****************************************************************
20th November, 2005
To
Mr. Arjun Singh
Minister for Human Resource Development
Government of India
New Delhi.
Dear Sir,
Forum for Autism is a parent support group registered under the Indian Trust Act, 1950 for persons with autism and comprises of parents, caregivers, Individuals with autism and professionals from various fields who deal with autism. We have gathered here at Shivaji Park, Mumbai, on the 20th of November 2005 for awareness walk on autism organized by Forum for Autism. On this occasion, we wish to press for the following demands, which would enhance the dignity and quality of life of individuals with autism and their families –
1.Recognize Autism as a disability and include it under the Persons with Disabilities Act.
Today, even though the National Trust recognizes autism as a disability, the Persons with Disabilities Act, which includes persons with mental retardation and/or physical handicaps, does not recognize autism as a disability. Although many people with autism do suffer from other disabilities mentioned in the Act, it is a known fact that they are often of normal and above normal intelligence, yet cannot lead an independent life due to this being a socio-communicative disorder. Such persons with autism cannot avail of the facilities, reservations and other concessions, which are available to persons covered by the Persons with Disabilities Act.
2. Include and integrate all children with any special needs, specifically autism, in schools (both Special Schools and mainstream schools).
The Government launched the IEDC [Integrated Education of Disabled Children] scheme in December 1974. However, educational administrators have been slow in grasping the value of Integrated Education (IE). IEDC met with limited success only a little more than one lakh CWSN [Children With Special Needs] have been covered. We must understand that Special needs people are an integral part of any society.
When the process of integration starts at young age, at the school level, both special persons and others / peers emerge as more complete human beings who are better equipped to face the ups and downs of life together. Only by such a process can special needs persons be truly integrated into society as adults.
3. Extension of concession for students with autism while appearing for the board examinations
Suitable concession may be extended after deciding the same through consensus approach similar to those allowed for students having dyslexia, learning disability and so on. The concession may be in the form of allowance of more time, exemptions of certain subjects, exemptions from answering subjective answers as well as concession of marks for passing etc. The aide may also be allowed to sit along with the students in the same manner to the amanuensis being allowed for LD, Dyslexic students.
4. Setting up Vocational Centers, Residential Home and Reservation of Jobs for Individuals with Autism.
A) Suitable policies and requisite funds must be created by central government including formation of Inter ministerial group (IMG) may be formed involving Ministry of Education, Ministry of Health, Ministry of Finance and Ministry of Law so as to address the issues relating to Vocational Centers, Residential Homes and to bring necessary legislation for that purpose. The National Trust Act, 1999 should be given more powers to address various issues that will help people with autism to live with respect and dignity in our society.
B) Inter ministerial group (IMG) as mentioned above must also formulate policies to assist the Parents Support Groups ( PSGs ) to set up Vocational Training Centers (VTCs ), Residential Home (RH) and implement the jobs reservation for Individuals with Autism in to the public as well as private enterprises for all ilk of employment sector.
The four demands, although simple, will go a long way in promoting the cause of persons with autism in India and in providing them a life of dignity and self esteem which is the birthright of any Indian. We trust that you will put your capacities to use and fulfill them.
Thank you,
Sincerely,
Sd/-
Parul Kumtha
(President)
Mumbai, India.
Date: 20th Nov. 2005
cc : Dr. Manmohan Singh , Prime Minister , India
cc : Ms Sonia Gandhi , President All India Congress Party, India
cc : Dr. A.P.J.Abdul Kalam , President , India
*******************************************************************************
Sunday, December 18, 2005
One in every 150 mothers loosing her child
Although it is hard to believe yet the same is true. The population of children and adolescent affected by autism is one in one hundred fifty in our country. As per the governmental report however the figure is still negligible to be considered as matter of worry.
Now the question is whether it is also because of better awareness amongst parents and people in general. If we see the report of columnist F. Edward Yazbak, MD, FAAP in USA ,between 1991, the first year autism was listed separately, and the present ( 2004-05 ), the total number of children serviced under the Individuals with Disabilities Education Act (IDEA) increased 3,449 percent — from 5,415 to 192,204. According to him Some researchers, many with PhDs, still believe that autism has not increased and that the present situation is a mirage due to better detection. They apparently believe that the diagnosis of autism was routinely missed years ago and that we have recently acquired superior abilities. Obviously these “experts” have not cared to tell us yet how come, now that we are so much better at diagnosis, we are not finding the thousands of old autistics that were missed 20 or 30 years ago.
At a congressional hearing on April 6, 2000, Bernard Rimland, PhD, who founded the Autism Society of America in 1965 and the Autism Research Institute (ARI) two years later, stated, “Autism starting at 18 months rose very sharply in the mid-1980s, when the MMR vaccine came into wide use.” In a later statement (July 14, 2003), Rimland remarked, "Late onset autism, (starting in the 2nd year), was almost unheard of in the ‘50s, ‘60s, and ‘70s; today, such cases outnumber early onset cases 5 to 1, the increase paralleling the increase in required vaccines.” Rimland should know. His extensive database at ARI, continually updated for four decades, is the largest in the U.S. today. In spite of all that, many continue to believe that the present epidemic is purely genetic.
In our country the awareness is so poor that no one is really bothered to discuss in general forum the cause and repercussion of such disorder. Here people, particularly the politicians who are in charge of making rules and laws are even not ashamed to take bribes to raise some topic of his constituency in the Parliament. Education bill amendment, Women’s Reservation Bill and all such bills are getting delayed due to more and more appeasement policies of central government towards Backward Classes, Schedule Classes and Schedule Tribes. The reason behind pampering all such communities is that they constitute large chunk of vote banks and no government whether NDA or UPA is willing to loose that big vote chunk. After all life is short so why to think for the nation with long-term vision.
Does any Human Rights Watch agency is watching my blog. Once I was told by one of my friend that they used to watch the torture of human beings around the world. My appeal to all of them in Mumbai , India to please come and visit those families who are going through such traumatized condition of mental torture by the Society , especially by the Schools which are supposed to provide the mental support to the families having children suffering from Autism , Cerebral Palsy and related disorder.
In India there is an all out effort to force the Govt. to think about the menace of autism by the Parents forum of different places in our country including here in Mumbai. There are plethora of NGOs and other related bodies in addition to National Trust formed by GOI who are also working in line, which spreads awareness about autism.
Recently there was even an incident in one of the reputed school in Mumbai who used to take children with autism or related disorder, now started telling the parents that autistic children are not fit for the regular schools and therefore should stop pestering regarding admission as autistics are as good as MR and that should be kept in mind. The school authorities even wrote in a piece of paper “we don’t take autistic children” placing the same inside an envelope and told to go out and see the same and show to other parents.
There is another side of the Autism, which is the link between MMR Vaccine and Autism. Although the medical community never wants to admit that vaccination cause autism but each and every case if any one wants to analyze the exact timing of the symptoms and if one see the preservative used such as thimerasol in the vaccine , one can even conclude that there must be some link.
As depicted by Yazbak about the Cochrane MMR Review :Like many skeptics in the U.S. and Great Britain, the Cochrane Collaboration must have had its own doubts about the ill-fated 2004 IOM special committee report, when it felt obligated to issue its recent updated MMR Review. The abstract of that 2005 Review (2005) by Demicheli, Jefferson, Rivetti and Price started, “Public debate over the safety of the trivalent measles, mumps and rubella (MMR) vaccine, and the resultant drop in vaccination rates in several countries, persists despite its almost universal use and accepted effectiveness. We carried out a systematic review to assess the evidence of effectiveness and unintended effects associated with MMR.”
The abstract of a study by Jefferson, Price, Demicheli and Bianco published in Vaccine in September 2003 started, “Public debate over the safety of the trivalent measles, mumps and rubella (MMR) vaccine, and the resultant drop in vaccination rates in several countries, persists despite its almost universal use and accepted effectiveness. We carried out a systematic review to assess the evidence of effectiveness and unintended effects associated with MMR.”
Both abstracts surprisingly concluded, “The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate. The evidence of adverse events following immunization with MMR cannot be separated from its role in preventing the target diseases.”
One can only wonder why the Cochrane Collaboration, while stating that the MMR safety studies have been “largely inadequate,” would think that the 2005 review would be any more convincing than the 2003 study.
What ever be the implication and after math, the Epidemiological studies, big and small, are simply not able to overrule the presented clinical and case study evidence that MMR vaccination could be associated with autistic regression in a small percentage of children who are genetically predisposed.
However kindly think about the condition that more and more parents in our country are aware and become skeptic about the application of vaccination to their children and become prone to several diseases and disorder for the future generations.
And even considering present population of 75 million differently-abled people and about 1 percent approximately having autism who are not yet being included in that 75 million. Considering 1050 million another 10+ million is definitely fall under this category and think about the social cost, which the government has to bear for the upkeep and rehabilitation of the entire population.
I always hope some right-minded people who can sponsor the formation of legislation will read the blog once and press for “Autism Awareness Bill”; “Autism Combat Bill” and “Education of Special Children Bill” giving these children of the God a chance to come back in the main-stream of the society and contribute to the nation.
Mumbai,India
Date :17-12-2005
Now the question is whether it is also because of better awareness amongst parents and people in general. If we see the report of columnist F. Edward Yazbak, MD, FAAP in USA ,between 1991, the first year autism was listed separately, and the present ( 2004-05 ), the total number of children serviced under the Individuals with Disabilities Education Act (IDEA) increased 3,449 percent — from 5,415 to 192,204. According to him Some researchers, many with PhDs, still believe that autism has not increased and that the present situation is a mirage due to better detection. They apparently believe that the diagnosis of autism was routinely missed years ago and that we have recently acquired superior abilities. Obviously these “experts” have not cared to tell us yet how come, now that we are so much better at diagnosis, we are not finding the thousands of old autistics that were missed 20 or 30 years ago.
At a congressional hearing on April 6, 2000, Bernard Rimland, PhD, who founded the Autism Society of America in 1965 and the Autism Research Institute (ARI) two years later, stated, “Autism starting at 18 months rose very sharply in the mid-1980s, when the MMR vaccine came into wide use.” In a later statement (July 14, 2003), Rimland remarked, "Late onset autism, (starting in the 2nd year), was almost unheard of in the ‘50s, ‘60s, and ‘70s; today, such cases outnumber early onset cases 5 to 1, the increase paralleling the increase in required vaccines.” Rimland should know. His extensive database at ARI, continually updated for four decades, is the largest in the U.S. today. In spite of all that, many continue to believe that the present epidemic is purely genetic.
In our country the awareness is so poor that no one is really bothered to discuss in general forum the cause and repercussion of such disorder. Here people, particularly the politicians who are in charge of making rules and laws are even not ashamed to take bribes to raise some topic of his constituency in the Parliament. Education bill amendment, Women’s Reservation Bill and all such bills are getting delayed due to more and more appeasement policies of central government towards Backward Classes, Schedule Classes and Schedule Tribes. The reason behind pampering all such communities is that they constitute large chunk of vote banks and no government whether NDA or UPA is willing to loose that big vote chunk. After all life is short so why to think for the nation with long-term vision.
Does any Human Rights Watch agency is watching my blog. Once I was told by one of my friend that they used to watch the torture of human beings around the world. My appeal to all of them in Mumbai , India to please come and visit those families who are going through such traumatized condition of mental torture by the Society , especially by the Schools which are supposed to provide the mental support to the families having children suffering from Autism , Cerebral Palsy and related disorder.
In India there is an all out effort to force the Govt. to think about the menace of autism by the Parents forum of different places in our country including here in Mumbai. There are plethora of NGOs and other related bodies in addition to National Trust formed by GOI who are also working in line, which spreads awareness about autism.
Recently there was even an incident in one of the reputed school in Mumbai who used to take children with autism or related disorder, now started telling the parents that autistic children are not fit for the regular schools and therefore should stop pestering regarding admission as autistics are as good as MR and that should be kept in mind. The school authorities even wrote in a piece of paper “we don’t take autistic children” placing the same inside an envelope and told to go out and see the same and show to other parents.
There is another side of the Autism, which is the link between MMR Vaccine and Autism. Although the medical community never wants to admit that vaccination cause autism but each and every case if any one wants to analyze the exact timing of the symptoms and if one see the preservative used such as thimerasol in the vaccine , one can even conclude that there must be some link.
As depicted by Yazbak about the Cochrane MMR Review :Like many skeptics in the U.S. and Great Britain, the Cochrane Collaboration must have had its own doubts about the ill-fated 2004 IOM special committee report, when it felt obligated to issue its recent updated MMR Review. The abstract of that 2005 Review (2005) by Demicheli, Jefferson, Rivetti and Price started, “Public debate over the safety of the trivalent measles, mumps and rubella (MMR) vaccine, and the resultant drop in vaccination rates in several countries, persists despite its almost universal use and accepted effectiveness. We carried out a systematic review to assess the evidence of effectiveness and unintended effects associated with MMR.”
The abstract of a study by Jefferson, Price, Demicheli and Bianco published in Vaccine in September 2003 started, “Public debate over the safety of the trivalent measles, mumps and rubella (MMR) vaccine, and the resultant drop in vaccination rates in several countries, persists despite its almost universal use and accepted effectiveness. We carried out a systematic review to assess the evidence of effectiveness and unintended effects associated with MMR.”
Both abstracts surprisingly concluded, “The design and reporting of safety outcomes in MMR vaccine studies, both pre- and post-marketing, are largely inadequate. The evidence of adverse events following immunization with MMR cannot be separated from its role in preventing the target diseases.”
One can only wonder why the Cochrane Collaboration, while stating that the MMR safety studies have been “largely inadequate,” would think that the 2005 review would be any more convincing than the 2003 study.
What ever be the implication and after math, the Epidemiological studies, big and small, are simply not able to overrule the presented clinical and case study evidence that MMR vaccination could be associated with autistic regression in a small percentage of children who are genetically predisposed.
However kindly think about the condition that more and more parents in our country are aware and become skeptic about the application of vaccination to their children and become prone to several diseases and disorder for the future generations.
And even considering present population of 75 million differently-abled people and about 1 percent approximately having autism who are not yet being included in that 75 million. Considering 1050 million another 10+ million is definitely fall under this category and think about the social cost, which the government has to bear for the upkeep and rehabilitation of the entire population.
I always hope some right-minded people who can sponsor the formation of legislation will read the blog once and press for “Autism Awareness Bill”; “Autism Combat Bill” and “Education of Special Children Bill” giving these children of the God a chance to come back in the main-stream of the society and contribute to the nation.
Mumbai,India
Date :17-12-2005
