Saturday, September 29, 2012

Disability Legislation - Must we wait for a Law to tell us to treat all patients?

There is a higher court than courts of justice and that is the court of conscience
Mahatma Gandhi


The Story so far...
In 2008 the United Nations Charter on the Rights of People with Disabilities came into being.The convention was an attempt to break from the traditional mold of viewing people with disability as instruments of charity and ensuring that people with Disabilities enjoy the same freedoms and human rights as all individuals. The charter. The fact that 88 nations ratified the the convention on the opening day made this the fastest human rights convention to be adopted by the UN.
One can argue that the convention by itself is nothing new. It merely ratifies what should be evident to any decent human being - that disabled people enjoy the same rights as others. Countries that ratified the convention (including India) are obligated to enact legislation to enforce the articles of the convention.
In 2012 the Government of India passed The Rights of Persons with Disabilities Bill which is designed to do just that. The bill is made up of six parts Part I contains the rights and entitlements; Part II provides for powers, duties and responsibilities; Part III elaborates on regulatory and monitoring authorities; Part IV addresses grievance redressal; Part V deals with offences and penalties; and Part VI is miscellaneous segment which is followed by a schedule on the named list of disabilities which accompanies the generic definition.

Does this change anything?
The bill moves on from the existing people with disability (PWD) act of 1995 to include more "generic definitions" of disabilities. Thallasemia, Heamophila and Dwarfism; not included in the original act find mention in the new bill. But is this really the approach we want to take. Far from following the stated aim of the convention the bill seems to want to create newer "definitions". Furthermore, while the fifth part of the bill states out that discrimination of a person with disability (including by a health care professional who refuses to render care) is punishable by a fine or imprisonment or both, it is hard to see how this law can be enforced.
It is the duty of every health care professional to tend to someone in need. This said very often the reason that a person with disabilities is denied health care has very little to do with the attitude of the health-care provider. The bill states that discrimination on the part of a health care provider would be punishable. How can this be enforced when the system doesn't allow for punishment of the road services that do not allow a person with disability to reach a bus stop much less travel by a bus. Similarly the law states that an individual with disability has the same rights as individuals without. Does that mean that in areas where there is no medical facility for the general population then somehow the absence of health care to an individual with disability is acceptable. Lastly the creation of generic definitions makes the whole bill seem like an exercise in futility. Is a child with a congenital heart defect supposed to be considered perfectly "normal" because unlike heamophila and thallasemia it is not listed among the "Generic Definitions". Is it acceptable to deny health care to a "normal" child but acceptable to punish the denial of the same to a child with disability.
As dentists we have an obligation to render the best possible care to each of our patients.  The list of plausible excuses to deny care to a person with special needs is a long and convincing one. "I am not competent enough to do so"; "the patient would be better off with a specialist", "I lack the necessary equipment to render effective care"... each of these arguments are effective, convincing and in many cases also true. I am quite certain that no legislation can prosecute a doctor who offers any one of these reasons. While the legal right to universal health care may be a great concept; the only way to enforce it is to see it as   a moral obligation.

Wednesday, August 29, 2012

Volunteering to work with Special Needs Individuals - A great first step for dental students



Almost 8 years ago I got my first exposure to special needs individuals by working as a volunteer. This was made possible by an institution called Vidyasagar in Chennai. I did not practice dentistry on my first visit, the visit was mainly fun, and yet in many ways the visit changed my life. It guided me towards pediatric dentistry (and the eventual step into special needs dentistry).  In Delhi  recently, I met the former Director of vidyasagar, Mrs Poonam Natrajan, a dynamic lady whose "welcome aboard" attitude was the key to making sure that Vidyasagar was never short of volunteers. She is currently the Chairperson of the National Trust for persons with Autism, Cerebral Palsy, Mental Retardation and Multiple disabilities. When I mentioned to her how much my time at vidyasagar had helped me, she pointed out that there were really few doctors who wanted to take time off; and worse still fewer NGO's that were willing to take them on. The problem she assured me was not one of lack of willingness. Many NGO's did not know what to do with doctors or dentists who volunteered. 
 
As someone who benefited immensely from my experience as a volunteer I felt that DCSN ought to offer a few tips to the dental student considering to volunteer. Below we try to answer a few of the commonly asked (or unasked) questions that bother each student who wishes to be a prospective volunteer.
Why Should I do it?
Apart from the obvious moral benefits of volunteering to work with individuals with special care needs, there is a more palpable benefit. A large part of special needs dentistry lies in overcoming a fear of working with  such individuals. Volunteering (even if it involves no medical or dental experience), gives every young dentist a confidence in interacting with individuals with special needs. Furthermore as a volunteer you are not bound by the strict objectivity or lack of interaction that a medical opinion demands (and which you will develop in later practice). As a young student volunteer you make friends who will stay with you for a life time.
When Should I do it?
Volunteering can be done at any age. The idea of spending time with individuals with special needs requires no special training. Many institutions (who have established programs) will give you a job that is in keeping with your level of training or comfort. (My first job of supervising sports clearly needed no skill!!!)
The only problem is that not all institutions are clear about what a volunteer is supposed to do. If you are unclear about your role and the organization feels you are dead weight then the situation may quickly deteriorate into boredom for you and frustration for your hosts.
Where the path is not defined make your own road...
Institutions may not realize the potential of having a dentist volunteer to work with them, however in most cases, given that you will be unpaid, they are more than welcome to have you on board. A little research into public health programs or brushing techniques; combined with a non invasive examination and counselling of parents is easily achievable. Organizations quickly recognize the potential of developing your experience into an organized camp. Furthermore you can serve as a bridge between your institution and the institution where you are volunteering... once you put your mind to it the possibilities are endless.
How long should I do it?
This depends on what you would like to do. If you would like to be a full time volunteer (working the whole day at the school) then a month is the ideal duration. You need at least a month to get a feel of the challenges that you will face as a special care dentist (trust me adaptation is more difficult for you than the patient!). A longer stay is only warranted if  you know what it is that your role in the organization is. If you are able to let the institution allow you to be a teaching assistant then you may want to stay on longer. Some institutions in urban areas may offer you the option of working an evening course or teaching on weekends; in which case you should stay for at least a semester.
Will the Organization let me In ? Will I be Charged?
For any institution that deals with special care individuals the safety of the individuals (whether residents or day scholars) is paramount. If your College is known to them then many places will let you in on the basis of a letter from your college certifying that you are a bona-fide student.  Most of the better organizations will charge only for your board and lodge, some may impose a small administrative fee but remember that if the institution is quoting a high fee to let you into a volunteer program, the institution may not be worth it at all.

Lastly it must be emphasized that being a volunteer doesn't make you an expert. If you are unsure then you can always say so. You can learn loads from people who have been Special Educators for a long time. Volunteering may just cost you one part of a summer vacation; but the memories will stay with you for a lifetime. Even if you do not make Special Needs dentistry your chosen vocation, the people you meet, their determination to overcome the odds and the general camaraderie of a good volunteer program are things that no one should miss out on.

For Opportunities on Working with NGOs in India you can contact the National Trust at
National Trust
For the Welfare of  persons with Autism, Cerebral Palsy, Mental Retardation and Multiple disabilities.
(Ministry of Social Justice and Empowerment, Govt of India)
16-B Bada Bazaar Road
Old Rajinder Nagar
New Delhi 110060