THRISSUR: Rosamma is the mother of a 21-year-old with Down Syndrome. Since the presence of one of the parents is required to take care of a differently-abled child, Rosamma opted to be a stay-at-home mom, while her husband has been the sole breadwinner. After spending a few years out of Kerala, the couple moved to their hometown Kochi expecting a better environment for their son.
However, the situation here has turned out to be worse, as they had to run from one office to another even for services they are entitled to and financial assistance. For the past two years and more, Rosamma and others like her have been waiting for the lump-sum money that they used to get under the Aswasakiranam scheme of the state government. The scheme assures financial assistance of Rs 600 per month for the mothers or family members of differently-abled and terminally ill bedridden children. Though most of the time, the beneficiaries get the fund annually, it helped a lot in financial planning as the mothers were not able to pursue a job because of the circumstances.
Chalakudy native Jayan has twins aged 20 who were diagnosed with Autism Spectrum Disorder. While the twins have been pursuing occupational therapy at Angamaly Alphonsa Bhavan, Jayan is worried about the lack of opportunities for differently-abled individuals who have turned 18. Sharing that more organisations and the government machinery should come up with projects to address the issue, Jayan also criticised the government, especially the Ministry of Social Justice, for not implementing the existing scheme for the welfare of differently-abled and their families in a proper way. "Be it Aswasakiranam or the Niramaya scheme of the central government, the families of differently-abled children had benefited from it. But the governments tend to ignore us, while we struggle each day to make this world beautiful for the special children," he said.
Niramaya is a health insurance scheme that provides financial reimbursements even for medical bills and outpatient consultation. However, from 2023 onward, the state government has stopped paying the premium and hence the parents were forced to pay from their own resources. The scheme reimburses an amount up to Rs 1 lakh for a payment of Rs 300 for BPL card holders and Rs 500 for APL card holders.
K M George, who coordinates the activities of various organisations that represent differently-abled children, special educators and parents in the state, pointed out that by stopping the funding of the state government towards Niramaya, about 1,20,000 special kids were affected as they have to pay the insurance from their pocket. Kerala is the state which has included the most number of people in the Niramaya scheme. He added that the state government had allocated a fund of Rs 54 crore for Aswasakiranam scheme in the 2023 budget alone. But only Rs 15 crore was disbursed.
Rosamma pointed out that in states like Gujarat, where she lived for about six years, one of the parents of the special kid who had the necessary minimum education would get a job in government schools through which the family would be financially secure. "We are not asking for such consideration, but at least the government could keep doing what they did for us all these years. Why cut down the benefits for the differently-abled children and their families, when it boasts about better social indexes?" she asked.
Raising various issues relating to special schools and their children, a coordination committee of various organisations had conducted a protest in front of the Secretariat on September 11. Though the government assured to consider the demands including relaxations in certain norms regarding special schools and educators, no steps were taken. Three months' payment under Aswasakiranam was received on September 6, soon after the parents announced the protest. However, nothing happened after the discussions. "Our children cannot demand their rights and hence we have to raise our voice on behalf of them," added Rosamma.