Interview
‘Persons with Down’s syndrome not getting proper treatment as human beings’
A well-known face in the Indian medical and disability fraternity, winner of the ‘Bajaj Discover – Positive Health Medical Excellence Award 2010’, the 43-year-old ‘geneticist with a social cause’ and Founder President of the Down’s syndrome Care Association, Dr Dnyandeo Kisan Chopade says: “There is tremendous ignorance and lack of awareness about Down’s syndrome not only in general society, but in doctors’ society too.” In an exclusive interview with Anika Sharma of D.N.I.S., the Nashik-based doctor talks about various issues and challenges concerning persons with Down’s syndrome, laws for their protection and rehabilitation.
D.N.I.S.: Please tell us in brief about yourself.
Dr. Chopade: I am a medical doctor. I have my genetic centre in the name ‘Genetic Health & Research Centre’ at Nashik, started in the year 2003, where I am providing counseling and testing for patients of genetic disorders. My main area of work is Genetic Health Assessment, Genetic Counseling and Chromosomal Analysis. I started ‘Down’s syndrome Care Association’ (D.S.C.A.) as its Founder President in 2006, with a few parents of Down’s syndrome children and doctors from relevant specialities.
D.N.I.S.: What is Down’s syndrome? Where did the idea of establishing D.S.C.A. come from?
Dr. Chopade: Down’s syndrome (D.S.) is the most commonly occurring chromosomal disorder in newborns, causing multiple disabilities with an incidence of 1 in 800. D.S. is caused by an extra chromosome 21 in the child. Normally, everyone of us has two copies of chromosome 21, whereas in D.S. there are three copies, and this extra copy of the chromosome is responsible for number of disabilities in the child. Often D.S. is associated with some impairment of cognitive ability, physical growth and physical appearance. Most individuals with D.S. have intellectual disability in the mild (I.Q. 50–70) to moderate (I.Q. 35–50) range. As a result, they may have some health problems but not necessarily in all the cases. They can become fairly self reliant in everyday life if proper education and training is given to them both at home and school. Emotional and behavioral problems that are often reported by family or others, results only when their emotional needs are not taken care of.
I had been actively working in the area of medical genetics for the last 18 years and have been observing Down’s syndrome as the most common genetic disease. What I also observed is that due to lack of knowledge, ignorance about the condition on part of the clinicians, general apathy at all concerned levels and unavailability of a support system, parents of D.S. children literally experience guilt, anger, indifference towards the child, hatred, inferiority complex and a lot of suffering. Not only the child suffers because of this, but the whole family’s happiness is at stake. This made me think of having an association of the parents and all the likely supporters. D.S.C.A. is a charitable registered trust, working towards the betterment of individuals and families of Down’s syndrome. It is one of the very few N.G.O.s in India involved in creating general public awareness about D.S. and providing assistance to affected families.
D.N.I.S.: What is D.S.C.A.'s primary area of work? What are the challenges you seem to be facing?
Dr. Chopade: With a mission to create an opportunity for D.S. individuals to live life powerfully and the life they love, we have set certain goals for D.S.C.A. These goals are to create a national platform for D.S. individuals and families, to create appropriate opportunities for them, to make necessary literature available through books, website and C.D. R.O.M.s, to do research at national level and disseminate the knowledge and to arrange conferences at various levels.
There are many challenges that we are facing. We do not have any source of income, manpower, place or land of our own and do not have any corpus of money for various activities. Only those involved with us voluntarily are doing the work selflessly. For some of the activities like the World Down’s syndrome Day, we could procure meagre funds. But then, we are finding it very difficult to continue with the work without financial and manpower support.
D.N.I.S.: What are the issues concerning people with Down’s syndrome?
Dr. Chopade: There are number of issues concerning persons with Down’s syndrome. They are not attended properly at all the possible levels like at home, schools, hospitals, society or workplace. They are not getting proper education and support. They are discriminated and hardly get their share of public resources. It will not be an overstatement if I say that they are not getting proper treatment as human beings. Apart from many health problems, there are other concerns like social acceptance, behavioral problems, financial problems, etc. There is no cure available for D.S. However, with early intervention strategies, proper support system, suitable education, public awareness, parents’ education for dealing with the situation and rehabilitation, D.S. individuals can live a reasonably good quality of life.
D.N.I.S.: What are the laws in India to protect the rights of persons with Down’s syndrome?
Dr. Chopade: In my knowledge, there is no special law dealing with the problems of Down’s syndrome exclusively. However, all the laws applicable for disabled persons are applicable to persons with Down’s syndrome also.
D.N.I.S.: Is the Persons with Disabilities Act (1995) being used by persons with Down’s syndrome to avail the various provisions listed under it?
Dr. Chopade: We have around 115 registrations of D.S. families from and around Nashik. Parents are not aware of any laws for the benefit of their child. However, we have recently started studying the laws and finding out the possibilities of support from the government and other agencies for these D.S. individuals and families. We have procured disability certificates of most of the registered D.S. children and now we have applied for the ‘Niramay Scheme’ for health insurance of some of the kids.
D.N.I.S.: Do you think there is a lack of awareness about Down’s syndrome in society?
Dr. Chopade: Yes. There is tremendous ignorance and lack of awareness about Down’s syndrome not only in general society, but in doctors’ society too.
D.N.I.S.: How many people are affected in India with Down’s syndrome?
Dr. Chopade: There is no data showing the exact number of people with D.S. born in India, but there are estimates showing that every day approximately 60-70 D.S. babies are born, making it around 20,000 to 25,000 D.S. babies a year.
D.N.I.S.: According to some reports in the media, almost 98% of children with Down’s syndrome have no access to education. What is your take on this? Should they be integrated into mainstream education?
Dr. Chopade: I cannot comment on the percentage as I do not have exact research data available. However, in my opinion, most of the D.S. children do not get the facility of education, especially from the rural areas. The western world has shown through research that children with D.S. should be integrated into mainstream schools for better inclusion. In India, this is not giving results for a number of reasons. One and the most important reason that I have studied is the negligent attitude of teaching institutions towards D.S. children. There are number of other reasons like unavailability of special staff, inadequate care providers, inadequate requisite facilities, mismatching syllabi for D.S. children and so on. My study also says that D.S. children do not receive proper education even in the existing special schools.
D.N.I.S.: What can be done to rehabilitate persons with Down’s syndrome?
Dr. Chopade: There are many things that can be done to rehabilitate persons with Down’s syndrome. First and most important is to create opportunities for suitable education, acceptable environment, awareness about the condition in society, special skill training based on individual capabilities, creating specific job profiles for the individuals and so on.
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