Families Caring for Children with Special Needs Face New Challenges During Covid-19 Pandemic

·4-min read

Ever since the lockdown stepped in last year, Chandan has been home. Initially, it was difficult to keep him occupied the whole day. "But after all these months, all of us are doing fairly well," said Chetan. The 45-year-old Chandan is the eldest son of this family and he has Down's syndrome. Families with one or more children with special needs have faced extra burden during the pandemic.

Chandan has been going to the daycare center run by the psychiatric department of Nimhans since he was 9 years old. Every morning he would hop on to the center's bus at Ramakrishna Ashrama circle at 7. After spending the entire day at the center, he would return home by 5 pm. The center provides food, counselling, treatment and also vocational training like candle making, baking, etc. They also have an in-house store where these things are sold and the money is distributed among the participants. Chandan earns around Rs 1,500 to Rs 2,000 out of it every month.

This routine of 35 years is broken for the first time. The center closed last year during the lockdown and all dependents had to stay back home. Chandan lives with his 78-year-old mother Padmavathamma, younger brother Chetan, sister-in-law and 4-year-old niece Poorvi.

Initially, it was a bit heavy on everyone at home since Chandan needs constant attention and people were just getting used to confused situation both outside and inside the house.

But gradually, things improved. Poorvi and Chandan are best friends now. They eat, play, sleep together and share a great bond. Every day, two varieties of breakfast are prepared at their house as Chandan likes to eat Chapathi daily. Things were a bit harsh on the family when Chandan tested positive a few weeks ago. He was admitted to a private hospital and was on ventilation. He was very scared to stay away from home and among unknown people. He stopped having food and was crying the whole day. All that he wanted was to return home. He needed special care and a very patient attendant which was not possible given the workload on the hospital staff as well. Unable to bear all this, the family brought him home in a week and took care of him. He recovered soon, but it was not an easy time for all of them. "He is like a small child. We can never afford to lose patience. Once he is sad by your words or deeds, he will never come near you," says Chetan.

The psychiatric rehabilitation services at Nimhans look after more than 300 such patients all through the year. Covid and lockdown forced them to shut down the center but they are constantly in touch with the patients. Dr Manappa Kolur, resident doctor, Psychiatric Rehabilitation Services, Department of Psychiatry, Nimhans says it has been difficult for the faculty to keep up the spirits of patients. "We have a 35-year-old female patient who is schizophrenic. Her only caretaker is her 80-year-old grandmother. The old lady herself needs to be taken care of, we can't expect her to follow up on everything even though she does manage to do most things. She couldn't come out of her house due to the lockdown and hence couldn't get medicines as well. We bought the medicines and sent them through Dunzo. If the patient had missed even a single dose of medicine, she would have to start everything from the beginning, such will be the situation of some," he said.

"Another 36-year-old patient with bipolar disorder lives with her brother's family. They keep asking me when she will be fine and why can't she look after herself and earn her living. Things are not easy and good for such patients everywhere. It has been an extra burden on the family members. And these issues are only manageable and never cured. So, the family members inevitably will have to take care of their wards" says Dr Kolur.

Most NGOs who were running daycare centers for such patients have shut now due to lack of funds and also for the feat of infection.

Nimhans is conducting regular yoga classes and craft sessions via Zoom call or Google meet to keep them engaged for some time at least. And they call every patient once a week and speak to the caretakers as well. Many a time, the caretakers slip into depression and need to be counselled. The center also provides services to people who have been abandoned by their families and live in State-run remand homes. The social work team at the center helps families to avail insurance facilities meant for this specially-abled by the government. "Patients ask me when can they be back at the center and we have no answer yet. Every phone call ends with the same sentence, 'Don't worry, you will be back at the center soon' though even I am not sure when that will happen," says Dr Manappa.

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