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.

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

Email : contactus@thenationaltrust.in

www.thenationaltrust.in

Dental Care for the Visually Impaired - Whose Impairment is it anyway?

Dental care for the visually impaired usually finds itself a chapter in textbooks of special care dentistry and at least a section in pediatric dental textbooks, but a recent experience with the treatment of children with visual impairment left me asking myself... Whose Impairment is it anyway? The patients' or the dentist's.
There are some excellent articles on the subject of how to approach the patient with visual impairment to which I attach the links here (Jaccarino 2009, Watson et al 2010, University of Florida Guidelines). These articles give the dentist an idea of the challenges of treating a patient with visual impairment, however there is another aspect to treating any patient... the human aspect.
An Idea is Born
When one of my interns came up to me and said she wanted to organize a camp for children with Visual Impairment as part of their mandatory community project; I was thrilled. But then came the usual barrage of doubts. "Can we treat such children?", "What are the special precautions we need to take?", "Will they allow us to treat them?".
Managing a child with any special need is always a three way process; the management of the child's needs, the management of the parent's fear and in most cases management of the dentist's own doubts. The treatment  needs of children with visual impairment are not very different from those of other children as the literature available on the topic will confirm. However the fear in the mind of the parent combined with the doubt in the mind of the young dentist can often mean that the children who could have received preventive and basic dental care from a general practitioner could end up waiting months to see a "specialist".
The second part of any program is the funding required."Who will sponsor us?" was the next question raised. The traditional approach would be to approach an institution or agency that funds camps like these, and agencies are often skeptical of fresh interns with little or no experience attempting something that (in perception at least) was a difficult task. Very often, the flames of momentum and enthusiasm generated by a noble idea are doused by the cold water of waiting for an official grant. With this in mind the next step was to ask the interns to consider raising funds for this project of theirs.
From Idea to Concrete Plan 
Turning the idea into a plan was the next step. In any project, good intentions are a necessary but not sufficient requirement. Transforming the idea into a serious plan that institutions and parents will trust requires planning, persistence and a willingness to pursue the idea regardless of obstacles. When the interns approached the rector of the university with the plan; he suggested a bold move. They would come up with the plan and be responsible for the management of the program. The faculty supervisor (the author) would only guide them and refine their plan; but they were in-charge. This turned a listless set of interns into a determined lot wanting to prove their worth. The program was transformed from an 'idea of the interns' to a 'program of the interns'. The dream of success and glory may be a motivator; but the fear of being actually held responsible for failure is perhaps a far more effective tonic. Within 48 hours a plan was in place that would satisfy the harshest of critics. Furthermore the interns and the faculty supervisor agreed that they would each contribute a nominal amount so as to make sure that the project had enough funds to be implemented even without support. To anyone (and there are a lot of people) who doubts the necessity of planning and paperwork, what happened next is essential reading.
"Build it and they will come..."
The response to the initial call for volunteers was heartening with interns wanting to be a part of what sounded like an interesting idea. But the response to the plan was even better. The Prince Salman Center for Riyadh Children Health(PSCRCH), adopted the plan and agreed to support this and all further programs based on this model. Generous contributions were made towards getting not only a simple camp but also one that would have gifts for the children including a brush and paste.What seemed a distant possibility was now slowly turning into a reality. Even more heartening was the response of the parents. In addition to using the school for children with visual impairment, the interns, with the cooperation of the school managed to secure the phone numbers of the parents of these children. The personal touch of calling the parents to tell them what was being attempted, got an immediate response from the parents. Even those who could not come promised to come for future check-ups and spread the word of the program. What had started off as a camp was transformed into a campaign.

The treatment of the children

Tell feel do, the first time for both dentist and patient

Once the ground work was laid there still remained the fear of the interns. An orientation was arranged to cover the basics of dental treatment techniques for children with visual impairment. After this they would then take up the preventive care of children in Phase I.More than just treating, each intern spoke to the parents to get an idea of what problems the children actually faced in the maintenance of oral hygiene. By the end of the day, the fear and apprehensiveness was replaced with an understanding. While some had patients who were co-operative  others had patients who were scared; the most important lesson was however, that children with visual impairment are just like any other children. The impairment in sight may be scary for the new dentist; but a supervised hands on experience transformed fear into a genuine realization of ability. There were children who were too scared to face treatment, and there were procedures for which the intern, or the parent or in some cases both preferred that the child be seen by a specialist. There were still limitations to the interns ability to treat; however these were genuine limitations of ability rather than the existing limitations of fear.

 A girl receives a gift from her dentist, but perhaps the knowledge
 gained by the dentist was the true gift of the day

Already plans are afoot for a Phase II; involving comprehensive treatment of these children. More schools have come forward to be a part of this program. The interns are using their experience with the parents to come up with their own Arabic audio aids and phone apps to promote oral hygiene among children with visual impairment.The greatest achievement of the day was however the removal of an unjustified fear from the minds of (at least this group of) young dentists.

A journey of a thousand miles begins with a single step, and on a hot Riyadh summer's day, a small group took that first step. There are bound to be obstacles and surely one camp is hardly going to solve all the problems of access to dental care faced by children with visual impairment, but once the fear of treatment has been removed from the mind of the dentist, it is indeed an irreversible step in the right direction.

This camp was possible due to the efforts of Dr Najla AlGamdhi who took the initiative to organize the camp, the Interns and students of the College of Dentistry RCsDP who gave it their wholehearted enthusiasm and the vision of Prof Abdullah Shammery; Rector RCsDP who gave the interns the challenge of organizing their own campaign and allowed them to rise to it.

Funding Special Care Dentistry - "Hi tech low cost" - Myth or Reality

'The difference between what we do and what we are capable of doing would suffice to solve most of the world's problems.' 

Mahatma Gandhi

One of the greatest challenge for any program that reaches out to those with special needs is the issue of funding. No decent human being ( and i do believe that all of us are inherently decent) would ever in principle refuse to care for an individual with special health care needs, however the question that everyone raises is, who will pay for it? Be it private practitioners for whom treatment is about making enough to keep their practice afloat, or government aided programs, whose aim is to keep the program afloat, the question is always about funding.

This raises the rather obvious question, how much money do we need, and is the issue really one of money. The traditional socialist response to this problem would  be that if each-one contributed a certain amount of time from their schedules to treat individuals with special needs then the issue would no longer be one of money. If each dentist treated say, one individual with special needs for every ten patients then there would be no shortage of doctors that individuals with special health care needs could turn to. Problem solved? Not quite.

Unfortunately treatment of individuals with special needs needs training, and in the traditional socialist model, this training would have to provided by institution, departments, centralized centers of learning. And that raises our all too familiar question... Who will pay for it?

Alternatively people who believe that the market is supreme would argue that if there was really no one providing care for individuals with special care needs, then then treating such individuals would definitely make economic sense and more practitioners would be drawn towards the treatment of individuals with special care needs. However anyone with any experience practicing special needs dentistry would point out that treating individuals with special needs requires not only more experience, training and often materials, but also time. And in private practice, where time is money... Who will pay for it?

While this type of circular logic can get frustratingly bogged in a debate about the merits of economic system or policy, the purpose of this article is far from that. I merely wish to point out that today technology allows people on the ground, regardless of what type of health care system their country follows, to actually implement dental care to individuals with special needs without increasing the cost, to either state or practice. DCSN looks at how the internet, and interactive learning could help overcome the age old barrier of cost.

Widening the Base

One of the biggest advantages of a connected world is that today someone who wishes to learn a new technique can simply go online and learn. One of the most impressive sites i have come across in this realm is a site called DINOH  http://www.dinoh.org/. The site puts up information, videos and techniques by which dentists can improve their skills with individuals with special needs. An online database greatly reduces the cost of education. And if a dentist in a far corner of the world can learn the latest techniques at virtually no cost, then she transfers not only her new found skill, but also the cost benefit to the patient. 

Categorizing Treatment

One of the greatest challenges that affects both dentists and parents, is the fear of the unknown. Very often simple care, especially preventive care, can be provided by any dentist or dental hygienist. However the fear of the parent/patient, combined with the fear of the dentist mean that the child is referred to a specialist, for treatment that could have well been provided faster and cheaper. The traditional logic has been that it is better to prevent a serious complication by the dentist than risk a complication. While this argument does have its merit, it can also be argued that in today's interconnected world, we should be looking at using connectivity to help both parents and dentists determine which procedures carry risks and where the risk is negligible.

Reinventing Teledentistry

When the digital revolution swept the world, in the early 1990s there was a lot of literature on using this new tool called the internet, to spread medical care. Telemedicine became a reality in many parts of the world. In the late 1990s there were a few articles on teledentistry. However in an era of dial-up modems and excruciatingly slow internet, not to mention sky high phone bills; many assumed that it was just not feasible. The world has come a long way in the past decade. Today, high speed internet is not only a reality in many developing countries, it is also cheap. A country like India, has not only one of the most extensive internet networks in the world, but also the cheapest. In this new world order, past objections to teledentistry fall flat. A network that reaches out to dentists and parents alike, can greatly reduce problems of access for the parent, improve connectivity and communication among dentists and go a long way in widening the base of people able to provide care for individuals with special health care needs.

The attack of the killer 'apps'

I recently asked a student who was about to extract a tooth in a child with a congenital heart disease what antibiotic prophylaxis she would consider. I got the shock of my life when she pulled out her 'smartphone'  and started reading the prophylaxis. I couldn't make up my mind whether I was angry because she did not know it, or amazed that she felt she did not not need to know it because she had an "app" for it! While I in no way endorse ignorance or any phone or product, I had to think, do these "apps" have a role in promoting special needs dentistry?

While an app to educate parents, or apps that help dentists diagnose and treat patients may sound far fetched,   a well designed app could go a long way in doing just that.

Decentralization

While only time will tell if the advantages of connectivity outweigh potential risks, one thing interactive learning will definitely accomplish is decentralization. Interactive learning offers far greater flexibility to local dentists to determine which of the models of learning they find online would be best suit their patients. Instead of relying on governments or institutions to solve problems (thus fund those solutions), the dentists could use the resources available online to apply whichever model best suited their patients. The virtually free cost of the solution would enable dentists to provide the treatment at no added cost to the patient. Such a model would still require strong online databases, which in turn would require academic institutions focussed on developing such a database.

The examples mentioned above illustrate how the interactive learning can greatly reduce the cost of providing dental care to individuals with special needs. The internet, or technology cannot replace the dentist. The delivery of quality dental care to individuals with special care needs will still require committed dentists and institutions that can provide resources to those dentists. All the internet does, is it makes the dissemination of those resources a litter easier and a whole lot cheaper.