World Down Syndrome Day 2023: Impact of Down Syndrome on family caregivers, lack of awareness, and need for inclusivity in education

Ever since Divya Menon's daughter was born with Down Syndrome a little over three years ago, it has only been an eye-opener about the many challenges that children with special needs face every day. She shares, "Ever since my daughter's birth, I became more aware of the lack of awareness of disabilities as well as the lack of inclusion in the mainstream." Over three years, the Hyderabad-based professional has seen many parents and institutions come forward to spread awareness and that has been very encouraging for her in her journey into a completely new space.

Every year, March 21 is celebrated as World Down Syndrome Day around the globe. The day in the third month was selected to signify the uniqueness of the triplication of the 21st chromosome that results in the syndrome in people. It is observed to raise awareness about the syndrome and the people dealing with many challenges every day. While there is increasing awareness about the syndrome and those suffering from it, family and friends of those believe there is a lot more that can be done for society to be inclusive towards those with Down Syndrome and Menon is one of them.

Challenges and support groups
It is primarily because those with Down Syndrome face a range of challenges that affect their physical, cognitive, and social development. Dr. Sapna Bangar, psychiatrist (specialist - Child and Adolescent), head, Mpower Centre Mumbai explains, "They have intellectual disability that can range from mild to moderate, physical development delays such as delayed walking, fine motor skills development and slower speech development, health issues such as heart defects, gastrointestinal problems, hearing loss and vision problems." Bangar says they also face challenges with social and emotional development such as difficulty with communication and social interactions and learning difficulties that include learning, memory, and attention. It is not without the discrimination and stigma that affects their opportunities for education, employment, and social inclusion. However, the Mumbai expert says there are exceptions, and many who lead happy lives with people around them.

Till now, Menon says she hasn't faced any challenges, however, she has two areas of focus that need to be addressed. While the lack of awareness is the primary challenge, she explains, "Inclusion in schools is still a struggle for many people." She does admit that since her daughter Anjani is still very young, she still doesn't have as much exposure to other challenges faced by people. "People equate disability to be a problem, while in reality, the lack of accessibility is the problem," she adds. Luckily for Menon, who is still learning about the syndrome, she is also part of a strong parent support group that is helping her along the way. "We receive guidance from senior parents of children or adults with Down Syndrome as well as DSFI (Down syndrome Federation of India), the apex body that works tirelessly to create awareness."

Growing up with her younger brother Aryan (in picture), who has Down Syndrome, Dharini Mishra said her parents had to face many challenges while try to secure his education and training in skill development. Photo Courtesy: Dharini Mishra

Inclusive education
One of the most important aspects of growing up is receiving an education in school and that presents different kinds of challenges for parents and kids. While Menon's daughter still hasn't started school, she hopes that educational institutions are more inclusive for her daughter in the future. "Schools need to be inclusive and the methodology of one-size-fits-all needs to be done away with. Every child is different so evaluating them for the same parameters doesn't help." She also believes that including children with different abilities in the mainstream helps the neuro-typical population acknowledge and accept the existence of people with different special needs and this would in the long-term benefit having a more inclusive society.

Even as the Hyderabad mother believes there should be inclusivity, Dharini Mishra stresses the need for more government schools for children with special needs along with hassle-free admissions. Mishra, who hails from Kanpur, has grown up with her younger brother Aryan, who lives with Down Syndrome. Now 26 years old, he grew up in the northern city, at a time when she says there were hardly any institutions for him. She explains, "My parents struggled with his education and more specifically his training in skill development. They even took him to a school in Rohtak, which was a government-sponsored institute built on a large campus and had basic facilities, but the staff was not trained to cater to the needs of such children." So, the Mishras didn't admit him there. "He went to a special school in Kanpur itself. When we look back today, there were so many skills he could have mastered but he didn't get that proper training," says Mishra, who like every other sister wants to see her brother do well in life.

Growing up with him and interacting with like-minded kids has shown Mishra how children with Down Syndrome are very focused and need only regular and precise coaching and it is something she hopes for others. "Only a well-trained teacher can nurture these special kids. Providing proper training for teachers is of utmost importance. Such training should be taken to smaller cities and towns as these places do not have proper infrastructure and trained teachers to teach such kids," she explains.

Encouraging employment opportunities
Mishra also shares Menon's sentiment about how every child has different needs and so they need to be trained to cater to their skill development accordingly. However, it doesn't stop there for her. "This change is also required in providing employment opportunities. I have seen people with impaired hearing and speech working in malls and hotels, which is a very good move. So, even Down Syndrome kids should be given a chance to work, however small that may be. With inclusivity, there will be more acceptance and these kids will become more confident and live an independent life." Interestingly, Mishra, who only moved abroad a year ago has seen them get a lot of opportunities and live independent lives working in different places, depending on their brain development. She adds, "Society needs to change its mindset about people with special needs. If given proper care, correct training, and encouragement, these people are capable of performing various roles in our society."

While this seems ideal, Mishra is aware that it will take a lot of time even though there is increasing awareness of the kind that Menon has experienced. "There has been development in the awareness of Down Syndrome but still there is a long way to go when it comes to acceptance." The fact that even today people target children and adults with the syndrome or family and friends don't accept them proves to be a hurdle. "This leads to inferiority complexes and they stay in a shell," she shares.

While that is society at large, there is a lot more to deal with in educational institutions. As many of them go to regular and special schools, one must admit that bullying is one aspect that occurs everywhere and needs to be dealt with but affects them differently. Bangar says, "Bullying is a serious issue that affects students with Down Syndrome more frequently than general children and can have long-term negative effects on their mental and emotional well-being. Teachers play a critical role in preventing and addressing bullying in schools." She says, educating students about the syndrome, promoting inclusion in the class, monitoring their behaviour to see who is bullying or getting bullied but at the same time encouraging communication, teaching them how to resolve a conflict and last but not the least involving parents can be very helpful for those with Down Syndrome.

This is understandably only the tip of the iceberg. At the civic and community level, Bangar says providing accessibility accommodations such as wheelchair ramps, accessible restrooms, and elevators in public places is also a start. This can ensure that individuals with Down Syndrome can navigate public spaces independently. For adults, businesses and organisations can provide employees with training on how to interact with individuals with Down Syndrome to make their working experience easier.

Dr Bangar's tips to support individuals with Down Syndrome

Be patient
Individuals with Down Syndrome may take longer to understand and process information, so it's important to be patient when communicating with them.

Offer support
Offer your support and help in situations where they may feel overwhelmed or challenged. This could include accompanying them to appointments, helping them with daily tasks, or just being there to listen when they need to talk.

Encourage independence
Encourage them to do things on their own as much as possible, but also provide support and guidance when needed.

Celebrate achievements
Celebrate their achievements, no matter how small they may seem, as this can help boost their confidence and self-esteem.

Provide opportunities
Provide opportunities for socialising and learning new skills, as this can help them develop their abilities and increase their confidence.

Avoid overprotection
While it's important to provide support, it's also important to avoid being overprotective, as this can limit their opportunities for growth and development.

Be inclusive
Include individuals with Down's Syndrome in family and social activities, as this can help them feel valued and accepted.

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