Press release made by Muscular Dystrophy Foundation India on 24.7.2010

Subject
G.O (MS) No. 27 of the Government of Tamil Nadu dated 14.6.2010, announcing the establishing of Day care cum physiotherapy centers in 6 districts for Muscular Dystrophy patients-regarding.

Mdfindia as an organization of muscular dystrophy patients and parents thankfully acknowledge the spirit of the Government of Tamil Nadu and its intentions in designing specialized schemes for the welfare of muscular dystrophy patients in Tamil Nadu. Needless to say, this is the first of its kind initiative by a state in India. The scheme as per the Government Order referred above in the subject provides for funding to NGOs to establish and run ‘day care cum physiotherapy centers’-one each in 6 districts, namely, Chennai, Vellore, Coimbatore, Thiruchirappalli, Madurai and Thirunelveli. The GO says that the Centers which are to be run by NGOs would have arrangements to commute muscular dystrophy patients between a centre and their residence and provide physiotherapy at the centre by appointing physiotherapists. The respective District Rehabilitation Officers have already received applications and the centers are expected to be established before the assembly elections.
It is this scheme that mdfindia, as an organization of muscular dystrophy patients/patients and who knows the pain and risky nature of muscular dystrophy, differs with. Our concerns are;

  1. Exclusion of rural and poor: For various reasons including lack of awareness even among the parents of children with muscular dystrophy, only a few patients have been so far identified in each of the districts. For example, while the Madurai district has only identified 5 patients so far, mdfindia has identified 44 patients in the whole of Madurai districts. It is obvious that even the identified patients are scattered throughout the district. Atleast 30 out of the 44 are poor and belong to rural areas which are far from Madurai city. This raises an important question as to how many of these patients would be able to be benefit from the centre which is expected to be located in the city. This is a condition that is applicable to almost all the districts in Tamil Nadu. Therefore, mdfindia contends that the scheme could be of use only to those living in the city and the rural poor would be automatically excluded as always.
  2. Risks & potential health hazards: Although, the scheme provides for daily commuting of patients to the centre and back home by a vehicle of the centre, mdfindia is of firm opinion that it would create negative impact on the health of patients and contains with it a lots of risk factors. For example, it is a fact that large majorities of muscular dystrophy patients are either already disable or would become disabling sooner or later. The physical condition of a muscular dystrophy patient, particularly those with Duchenne Muscular dystrophy, Spinal Muscular Atrophy and Congenital muscular dystrophy is much sensitive and requires specialized attention while on move. Many would have already developed bone contractures and scoliosis. Such a condition would always make sitting and balancing difficult and requires company of an informed person. Given these conditions, mdfindia is afraid that the commuting of muscular dystrophy patients twice daily for an approximate 30-50 kilo meters would certainly pose lots of risks and threats to a patient. Therefore, we contend that the center based approach would not yield benefits to muscular dystrophy patients, but harm their health.
  3. Psychological issues: It is a known fact that the children afflicted with Duchenne Muscular Dystrophy die during 14-17. Generally, no parent would ever want to let their children know of this fact. However, there are families, particularly in the rural areas who let their child know of the fact, by ignorance. We have seen children with serious psychological problems and who fear for death even for minor ailments and scream as to ‘whether, I would die?’ It is important that the children must be kept happy and free from any sort of fears. Whereas, the centre based approach might cause a risk of such children interacting and influencing other children and let them also know of the facts. We don’t think the centre would be able to avoid such potential risks.
  4. Risk of excluding from mainstream schooling: While, ‘inclusive education’ is being emphasized for more than ever in the context of the SSA scheme along with the the Right to Education Act and the PWDs Act,  there are schools which already deny admission to/continuing education of children afflicted with muscular dystrophy. We are afraid that the present scheme of the government could serve as an excuse for those schools and give them the courage to direct children to the day care centres. There is a possibility that the parents could also loose their grounds in ensuring mainstream schooling of their muscular dystrophy children.
  5. Risk of attracting infections: It is common that the children afflicted with Duchenne Muscular Dystrophy and who are at the age group of 10-12 are very much vulnerable to lung infections and respiratory problems. We are afraid that the day care centers could expose and cause them to attract a variety of infections which would be fatal.

While indicating potential problems and shortcomings of the scheme, mdfindia do feel responsible to make the following recommendations;

  1. Given the complexities of the disease, it would always be a wise idea to consult parents/patients and parents’ associations before designing a scheme/program. Therefore, mdfindia would strongly recommend that the State government evolve a consultative process that helps developing effective and sustainable programs.
  2. Given the constraints and risks involved in ‘Centre based approach’, mdfindia would advocate for ‘home based services’, particularly when it comes to muscular dystrophy. In this understanding, it is further suggested that the state government could consider appointing a Physiotherapist in each of the Taluks and entrust them to provide physiotherapy services to patients at their door steps. It would multiply the benefits in terms of, ensuring regular physiotherapy, employment to at least 200 physiotherapists, etc.

Having said so, mdfindia appeals the Tamil Nadu government to kindly review its decisions and re-design the scheme through a transparent consultative process with the muscular dystrophy patients/parents and organizations working for muscular dystrophy.