What does it take to parent a child with disabilities?

Infographics: TBS

Originally published: The Business Standard

Sanjida Nahar Tumpa and Elius Sarker had just welcomed their baby boy, Sahel, into the world after seven years of their marriage. From the moment Sahel looked into their eyes, they knew their lives had changed forever — but not just in the way any parent’s life changes with the arrival of a child. Sahel has cerebral palsy.

“After our marriage, we had to go through a lot of complications for four to five years before Sahel was born. But seems like Allah has been taking us through a trial. I often find myself wondering what sins we committed to face such a punishment,” said Tumpa, mother of five-year-old Sahel.

For about seven months now, Tumpa and Elius made a heart-wrenching decision to pause Sahel’s therapy and education — a choice that no parent would ever have made if they weren’t pushed to the walls with no alternatives left.

“The expenses are just too much to bear. Special schools and therapy sessions are draining all our resources, also there are other health concerns. It felt like we were failing Sahel, but had no choice. We had to put our faith in Allah and hope for the best,” Tumpa shared as her voice echoed a profound sense of guilt.

In their family household, Tumpa’s husband Elius is the sole breadwinner. He works at a private bank. Meanwhile, Tumpa, despite holding a BBA degree from Dhaka University and previously working at a private company, left her job. She decided to do so only to provide her son with the round-the-clock care his condition demanded.

The money Elius brings home, a steady Tk55,000, is barely enough to cover the expenses for their 3-bedroom apartment in Lalmatia, not to mention the substantial costs associated with caring for a child with special needs.

“Initially, we had Sahel join a special school in Lalmatia, hoping it might help reduce the therapy expenses. When we saw the combined costs of school, therapy, and other expenses amounted to around Tk40,000 a month, we had to make a tough call to pull him out of the special school after just a few months and stick only to therapy.

Even that [only therapy] used to cost us Tk16,000 a month,” said Elius.

With the overall cost of living in the country shooting up in recent times, even budgeting Tk16,000 has become overwhelming for Sahel’s parents.

“We’re at a point where we simply can’t afford to keep him in these expensive programmes. Now Sahel’s mother and grandmother take care of him, watching YouTube videos,” Elius Sarker shared.

Sahel’s ailing grandmother, 64, also requires medication worth Tk5,000 per month, which only adds to the struggle of this family. “Parents of children with special needs perhaps need to have a money tree,” the father added.

The conversation took an emotional turn as Elius, with tears streaming down his face, shared, “We’ve given up all our desires and recreation, yet we still can’t provide enough for our only son.”

[quote author=”Elius Sarker, father to a 5-year-old boy with cerebral palsy” layout=”right”]”Parents of children with special needs perhaps need to have a money tree”[/quote]

It seemed as though the weight of the financial burden affected the family much more than Sahel’s condition.

“If Sahel had been a typical child, I could’ve just sent him to a regular school and taught him myself. But now, I sometimes think we are extraordinary though our pockets are not,” said Elius.

The financial weight in numbers

Speaking to 20 parents in the capital whose children have disabilities, The Business Standard found that the average monthly expense for nurturing a child with special needs falls between Tk5,000-Tk15,000. This estimate, however, doesn’t cover education or therapy costs.

Dietary changes to manage hyperactivity are one of the expensive maintenances; rice noodles that cost Tk51 as an alternative to Tk15 noodles is one example.

Special toys for children with special needs also come at a higher price. For instance, crawl tunnel, agile ladder, balance board, puzzles and hop balls combined can cost up to Tk10,000-15,000. Therapy materials, such as Talktools, are often costly and out of reach for many.

Meanwhile, professional therapy sessions cost between Tk500-1,500. If three sessions are taken per week at a rate of Tk1,000 each, the monthly cost is Tk12,000.

If anyone opts for additional OT (Occupational Therapy), SLT (Speech and Language Therapy) and Behaviour Therapy, the monthly cost may go up to Tk36,000.

Including them in a special school programme requires a yearly admission fee set between Tk30,000 and Tk50,000 and monthly school fees of around Tk15,000 to Tk25,000 varying from school to school in the capital.

Further support for managing a hyperactive child, such as hiring a home tutor, adds costs between Tk5,000-8,000.

Moreover, for working mothers, ensuring that the child receives proper care during work hours means either arranging for home care, which costs around Tk5,000 or opting for day-care services, which require an additional expense of Tk8,000.

Such costs are unaffordable for most middle-class families even in urban Bangladesh.

The financial burden, however, is only one facet of the challenge. The emotional and social toll on families is profound.

“It’s really tough seeing our kid being treated differently, and that too, sometimes by our own relatives. How do you deal with that as a father? The financial burden is one thing, but the lack of acceptance and support from those closest makes it worse,” says Sahel’s father Elius.

A 2021 survey by the Bangladesh Bureau of Statistics found that out of 47.42 lakh people with disabilities in the country, 17.9% are children aged 0 to 9 years.

Meanwhile, for Nazia Toma, mother of a child with ADHD in a village of Cumilla’s Brahmanpara, options are limited since there is no access to therapies or special schools in rural areas.

“We never gave any therapy or anything to our daughter. We only heard about these but how can we afford so much money? Sometimes, we take her to BRAC seminars when they arrange any programme.”

With faith as her refuge, the mother says, “All I can do is pray to Allah for His mercy, and hope that our child will be normal one day. I am ready to give anything, if it’d cost my life for his, I am ready to sacrifice.”

How to improve these parents’ realities?

Dr Nafeesur Rahman, a disability and development consultant with over 25 years of experience, emphasised the crucial need for governmental intervention in supporting these children with disabilities.

“The lack of government-funded services for these children means the burden of care and financial strain falls entirely on the parents. Since the private sector is primarily profit-driven, essential therapies and developmental programmes become inaccessible to most,” he explained.

He also said, pointing to the reality, “Such essential services for children with special needs end up being available only to a select few who are financially well-off. What about the rest?

How many people in Bangladesh can afford to spend over Tk20,000 on a single child? It excludes around 95% of the population from accessing the support their children desperately need.”

“The sentiment is clear: the current model for special education and therapy services in Bangladesh needs to be revisited. We must establish more subsidised or government-backed programmes to lighten the load on these families,” he suggested.

Dr Nafeesur Rahman also recommends expanding the responsibility for disability-development initiatives beyond just the Social Welfare Ministry and include the Health Ministry. According to the expert, “The Social Welfare Ministry doesn’t have the manpower to facilitate the development necessary for a child with disabilities.”

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