A total of 35 such patients died between January and July of this year due to a lack of medical care
The Tamil Nadu government provided motorized wheelchairs which soon got tangled and there were no service stations to fix them. | Representative picture
While Tamil Nadu Prime Minister MK Stalin welcomed the centre’s decision to exempt goods and services tax (GST) on drugs for rare diseases such as spinal muscular dystrophy, some of the demands made by people with spinal injuries have gone unheeded.
There are only a few organizations in India that are committed to improving people with spinal injuries. One such institution is the Spinal Injured Persons Association (SIPA), founded in 2015. It has 2,300 members and is represented in all 38 districts of Tamil Nadu.
“One of the biggest problems for people with spinal injuries is pressure ulcers, or pressure sores, that occur because they are bedridden. If the wounds are not treated properly, the patient can die. While the COVID was raging, many of us were unable to get adequate medical care. A total of 35 people with spinal injuries died from bedsores between January 2021 and today. Still, around 240 people need treatment for pressure ulcers, ”said T Vandiathdevan, SIPA secretary.
About 90 percent of spinal injuries are accidental, either from traffic accidents or from falling from a height. Others can be caused by congenital diseases. “A crippling spine injury can lead to the loss of a job for the person concerned and prevent the person’s close family help from being deserved because they have to take care of the patient. So the government should remember to provide at least 5,000 rupees to each of us as monthly aid, ”Vandiathdevan said.
Among other things, the government has identified people with spinal injuries as “people with physical disabilities”. “But they should be identified as ‘people with multiple disabilities’,” said Vandiathdevan. “It is widely believed that we only have one orthopedic disability, which means that we cannot use our hands and legs. But that’s part of the problem. That being said, we have issues like neurogenic pain, heterotrophic ossification (growth of extra bone) and urinary tract infections, ”he added.
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The Federal Council has learned that people with spinal injuries are not identified as “people with multiple disabilities” because the term “multiple disabilities” denotes a person with disabilities such as “musculoskeletal disorders”, hearing and visual impairments, etc. So it cannot be seen as “multiple disabilities”, ”said an activist who works for people with disabilities.
A neglected section
In order to get around, people with spinal injuries are supported by battery-powered wheelchairs. However, most wheelchairs made available by the Tamil Nadu government developed problems before the three-year warranty expired. “We asked the government to distribute battery-powered wheelchairs. The government accepted our request and made a private company responsible for making it. Each wheelchair costs 75,000 rupees. The company gave a three-year warranty and said it had six service centers in Tamil Nadu. But such a center does not exist. We were given fake addresses. So the wheelchairs are useless to us now, ”Vandiathdevan complained.
The state also does not have adequate rehabilitation centers for people with spinal injuries. “There are only a few private rehabilitation centers in the whole country. In Tamil Nadu, there is a state rehabilitation center in Chennai, but it does not take proper care of the patients. The state also has three or four private rehabilitation centers, like the one run by the Christian Medical College in Vellore. You are doing a good job. Rehabilitation is essential for a person injured in the spine, ”added Vandiathdevan.
Aside from rehabilitation centers, these people need separate nursing homes. Such a private house is in operation in Coimbatore without any support from the state government.
“At least male patients have their families to look after them. Most patients become a burden for their families and are neglected. In some cases, the families try to kill them, ”he said.
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S. Namburajan, general secretary of the Tamil Nadu Association for the Rights of All Types of Disabled People and Carers, said a separate investigation was needed to investigate corruption in the distribution and maintenance of wheelchairs.
“The spine injuries not only have to be looked after by the disability department, but also by the health department. It is very sad to know that the wheelchairs given to them have become useless to them, ”he said.