Challenges

Early Intervention and Inclusive Education for Children with Disabilities.

The theme for EMx 2019 is “Early Intervention and Inclusive Education”, which aims to source solutions related to challenges faced by children with disabilities.

Our partner V-shesh helped us host stakeholder consultations with experts and persons with disabilities in 4 different cities (Delhi, Mumbai, Bangalore, Chennai). Many challenges were identified during these consults, out of which 15 challenges were selected for this EMx 2019, which can be divided into the following four categories :

Click on the challenges to view the Challenge description and Challenge Brief PDF.

Category Challenge Name Disability

Early Diagnosis and Therapy
Difficulty for parents in detecting low/partial blindness and lack of awareness on appropriate intervention Vision Impairment  
Lack of awareness amongst doctors and parents regarding early diagnosis of deafness. Deaf or Hard of Hearing  
Inappropriate early interventions methods for the deaf child to facilitate learning. Deaf or Hard of Hearing  
Pediatricians and parents not trained in screening indicators for neurodiverse children Developmental Disability  

At Home and Community
Deaf children having difficulty in communicating with parents at home Deaf or Hard of Hearing  
Neuro-diverse children bonding with their families Developmental Disability  
Adaptation of daily activities of living for children with severe physical disabilities. Mobility Impairment  

In School Environment
Internal navigation in school buildings, classrooms, toilets, labs, for blind students. Vision Impairment  
Inaccessible transport infrastructure to get to school. General Challenges Across Disabilities  
Inaccessible school facilities for wheelchair users Mobility Impairment  

Accessible Learning Content
Over emphasis on academics achievement overshadows the holistic development of a Neuro-diverse child. Developmental Disability  
Lack of inclusive teaching aids, accessible content, and assistive technology for blind students at school. Vision Impairment  
Deaf children facing difficulty in communicating with teachers, lack of sign language content and visual learning tools for teaching concepts. Deaf or Hard of Hearing  
Lack of co-curricular activities designed for children with physical disabilities. Mobility Impairment  
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Difficulty for parents in detecting low/partial blindness and lack of awareness on appropriate intervention

Insight

Most parents don’t keep track of whether their child is responding to visual stimuli or not because they are unaware of the early signs of blindness. If the child is completely blind, parents get to know it within 5-6 months of birth. Detection of partial blindness takes a much longer time and is more difficult.

Impact

40% of all childhood blindness is avoidable or treatable in early childhood. For children who have vision loss that cannot be clinically treated, low vision devices and early rehabilitation can be a crucial factor in holistic growth. A lot of child’s early learning comes from vision, and early onset visual loss can have profound consequences on a child’s motor, social, emotional, and psychological development.

Ideas

Can we design a simpler way in which parents can assess their child’s visual skills, detect vision loss early on and seek appropriate interventions?

Lack of awareness amongst doctors and parents regarding early diagnosis of deafness.

Insight

Out of 1000 neonates, at-least 5-6 infants are born with a hearing impairment. Universal Newborn Hearing Screening (UNHS) which is a tool for screening newborns, is not practiced by most doctors in India, leaving thousands of deaf children undiagnosed every year. In the absence of UNHS, a child with hearing impairment may go unnoticed until the age of 2 or more.

Impact

Early and timely detection of deafness is crucial to facilitate appropriate intervention and therapies for the deaf. Without early intervention, children with hearing loss will show irreversible deficit in communication, psycho-social skills and literacy. They are more likely to have academic underachievement, problems with employment and psychological distress. Early detection is also important for language acquisition and cognitive skill development.

Ideas

Can we design solutions to make medical professionals and parents more aware regarding screening tools and methods for detecting deafness?

Inappropriate early interventions methods for the deaf child to facilitate learning.

Insight

Very few doctors in India are informed about different intervention options for the Deaf. Due to the stigma associated with signing, they do not inform parents about the importance of language development through Sign Language and continue to suggest Cochlear Implants and oral methods as the only solution for a deaf child. These solutions are often capital intensive and require regular support and therapy. However, parents are not fully informed before making decisions and choosing between different methods (oral and sign language )

Impact

Early and appropriate intervention methods are crucial in facilitating a deaf child’s learning and language and comprehension from a very young age. Not having all the information, parents often end up putting all their limited resources available into what is told to them by the doctors. When one method doesn’t pan out as planned, they are left with no reserves to spend on the child. The he child ends up losing early years that were critical for language acquisition and faces language deprivation in the long run, which has a negative impact on his/her social, emotional and intellectual development.

Ideas

How can we design solutions to help parents make more informed choices about interventions for their deaf child?

Pediatricians and parents not trained in screening indicators for neurodiverse children.

Insight

Studies show that there is an average delay of 32 months between parents’ first recognition of a problem with their child and an eventual diagnosis of neurodiversity. This is because many pediatricians in India are unable to identify early signs of neurodiversity in the child. They often attribute it to behaviors such as shyness, slow language development, or isolation from peers. This results in diagnosis often being delayed till the ages of 4-5. Screening clinics do not have therapists and counselors who are trained to work with parents and caregivers in to help them identify clear indicators at home.

Impact

Intervention after the age of 4 can result in significant loss in language, cognition and adaptive behavior of the child. Early intervention drastically improves the quality of life and the child’s ability to adapt to daily living requirements. Best results for children with developmental disability can be achieved when the parents work collaboratively with the therapists.

Ideas

How can we develop a solution to help new parents and doctors identify screening indicators and track behavioral milestones for neurodiverse children at home?

Most deaf children, especially those born to hearing parents have little or no communication with their family members.

Insight

Hearing parents are apprehensive that if their child learns sign language, he or she will not be able to integrate well into the hearing world.This lack of awareness regarding benefits of Indian sign language inhibits parents from learning it and effectively using it to communicate with their child.

Impact

In absence of communication with the family, the learning process of the deaf child gets hampered. The child has virtually no communication and language development until he/she reaches school.
Because parents don’t understand the importance of a bilingual education, they focus only on speech acquisition and the child misses out on crucial cognitive, social, and emotional development that comes from learning a visual language in the early years.Lack of communication also results in lack of bonding with family members and the child grows up with a feeling of isolation and low confidence in his or her abilities.

Ideas

How can we create solutions that can help deaf children communicate better with their hearing parents?

Neurodiverse children bonding with their families

Insight

Interventions for children with intellectual or developmental disabilities focus on building their social and communication skills, along with fostering their developmental abilities. However, the onus of developing these abilities does not lie solely with therapists, parents and family members play a critical part in this process. Parents are often so caught up in the care-giving of the child that they forget the importance of bonding with the child in an interesting and effective manner for his or her development. Additionally, because most games and activities are not accessible for children with disabilities, parents have even more difficulty in finding ways to engage with their child.

Impact

Guidance from specialist and medical practitioners often does not extends beyond therapy and other basics. Games and co-curricular activities enjoyed by the children with their parents enable automatic social, emotional and communication abilities in the child. It enables the parent to understand the child and help him/her develop in a more holistic way. Importance of bonding over games should not be undermined and should be given equal importance in parent counselling.

Ideas

How can we design games and activities using auditory, visual and sensory inputs, that help parents engage with their neurodiverse child?

Adaptation of daily activities of living for children with severe physical disabilities.

Insight

Finding devices and adaptations for children with limited upper-trunk control is a big challenge. Most devices are not available in the local market and whatever good products are available, are not listed in a single portal and have to be imported from abroad, which becomes very expensive. Parents often end up designing a product by themselves or customize readymade products which suit the needs of their child. Because there is no way for them to learn from the experiences of other parents, parents of children with severe disabilities have to invest a lot of time and energy in doing research and working with carpenters, and most often end up with products that do not live up to their expectations.

Impact

Due to lack of affordable and readily available devices, children become heavily dependent on their parents for daily activities such as eating. This undermines the child’s independence and subsequently their self-esteem. The physical strain on the parents and caretaker increases manifold as the child grows and becomes taller and bulkier and as simultaneously the parents/caregiver becomes older and weaker.

Ideas

How can we design devices and adaptations to make it easier for parents to support their children in daily activities of living?

Internal navigation in school buildings, classrooms, toilets, labs, for blind students.

Insight

The ability to navigate from place to place is an integral part of daily life. Although it is easy to imagine getting around without vision in well-known environments, navigating entirely new spaces can be extremely stressful situations for young children who are visually impaired.There are two challenges students face while navigating internally in schools and classrooms. First is to identify the location of various facilities within a building, such as toilets, classrooms, labs, etc. and second is to navigate through the educational institution without bumping into various objects on the way.

Impact

Difficulty interpreting the environment, especially if it is not built to a standard and visiting spaces for the first time can be highly disorienting and intimidating for blind children. Lack of tactile features in schools and classrooms makes visually impaired children rely on others for assistance, or worse, forces them stay at home more. The loss of one's ability to move freely and independently has a great negative impact on the self-esteem of a child. Not only that, it also hinders the sensory exploration of a child which leads to brain development and cognitive intelligence.

Ideas

How can we design navigation and orientation solutions that help children with vision impairment navigate new spaces freely ?

Inaccessible transport infrastructure to get to school.

Insight

Getting to school is a big challenge for most children with disabilities. For e.g. most school transport systems such as buses, vans and auto-rickshaws are inaccessible for wheelchair users as they do not have functioning ramps to board the vehicle. Children with vision impairment and intellectual disabilities often require assistance to travel as they are unable to identify bus numbers independently and bus drivers are not sensitized to stop and wait for them to board and support them during the journey. This results in parents having to arrange for personal transport and incur additional costs in order to send their child to school.

Impact

The ability to commute to school daily is one of the most basic requirements in order to access a classroom education. On a day to day basis, inaccessible transport system can cause undue stress and anxiety. The child might face trouble in reaching their destination and/or undergo physical injury while trying to board the vehicle. At a broader level, this challenge impacts all aspects of a student’s life and perpetuates dependency and isolation. If the school doesn’t provide support and the parents don’t have the resources to arrange for personal transport, the child continues to face difficulties and ends up dropping out of school.

Ideas

How can we create solutions to help children with disabilities get to school as easily as their peers?

Inaccessible school facilties for wheelchair users

Insight

In order to have a similar educational experience as other students, a child with disability should be able to access all the facilities in a school such as classrooms, bathrooms, libraries, etc. Because of the lack of a physical barrier-free environment, children on wheelchairs are often excluded from mainstream schooling. Even if schools do admit wheelchair users, they do not have the adequate infrastructure or resources in order to accommodate them. The additional costs of having caregiver to assist child during school hours are also extremely high, and cannot be afforded by everyone.

Impact

Not having access to basic amenities such as toilets is not only critical while attending school for 6-7 hours every day, it is also a violation of the child’s basic fundamental rights. Lack of inclusion in school results in most children dropping out of school. When a child with disability is denied being in a school facility, it highly undermines the child’s confidence. Since learning does not happen only in classrooms, but also in social interactions with other children, children with physical disabilities are denied of forming relationships with other children and their learning is hampered when they cannot access all the facilities in the school.

Ideas

How can we create solutions so that children with physical disabilities are able to access all the same school facilities as their peers?

Over emphasis on academics achievement overshadows the holistic development of a Neuro-diverse child.

Insight

The Indian society gives lot of credence to academic achievement of a child, as it is believed that good academic performance directly correlates to future employment opportunities. Because there is a lack of resources and understanding on how to assist students with disabilities, most schools try to fit the children in a general education curriculum. Many neurodiverse children who enroll in mainstream schools shift to special schools or resort to home schooling. However, whether in mainstream or in special schools, these children do not acquire the basic skills (such as organizing one’s time schedule, travelling independently) they need to become independent and lead a dignified life. There is a need for individual assessments and understanding the development needs of the child to enable them to perform up to his/her potential. Instead of using the same yardstick for all, schools and special educators have to take a child centric approach to learning.

Impact

Lack of basic skills among these children have long term implications on their overall development. Children do not have a strong awareness about themselves and their environment. Their social circles are severely restricted to their family members and service providers, and their friend groups start dwindling down as they get older. Hence they end up feeling isolated and bored when they reach adolescence. Awareness about bodily developments and sex education is severely lacking and children with developmental disabilities often do not undergo counselling that prepares them for higher education and job employ ability for the future.

Ideas

How can we create solutions and platforms to help neurodiverse children pickup life skills and build strong social interactions?

Lack of inclusive teaching aids, accessible content, and assistive technology for blind students at school.

Insight

Most teaching material in Indian schools and classrooms is largely visual. This leaves out learning for children with vision impairment and prevents them from developing on par with their sighted peers. Braille textbooks are not easily available and there is a lack of inclusive teaching aids such as tactile diagrams for understanding concepts of Science and Mathematics. Assistive Technologies such as CCTV magnifiers are also very expensive and schools don’t provide any support to blind/low vision students in acquire them.

Impact

Lack of accessible content means that a child with vision impairment cannot access the same learning material as their peers. This severely affects the child’s understanding of various concepts during school and restricts the stream of education they can pursue afterwards. Of the 68% of blind students who go to school, 11.5% eventually drop out. (Census 2011).

Ideas

Can we find solutions to make printing braille books cheaper and create inclusive teaching aids to help students with vision impairment understand educational concepts of better?

Deaf children facing difficulty in communicating with teachers, lack of sign language content and visual learning tools for teaching concepts.

Insight

Most deaf schools in India continue to teach using oral methods. Teachers often identify children with speech as intelligent and the others as not. These hidden biases inhibit teachers from communicating effectively with deaf students in sign language and exploring their true potential. Along with this, there is a huge lack of deaf-centric pedagogy, visual learning, and interactive teaching methods adopted by deaf schools, which makes it difficult for students focus and learn in the classroom. Content in sign language that explain concepts to students in a context-based manner is also missing.

Impact

Visual content, one-on-one interactions and use of sign language are critical to a deaf child’s learning experience. In the absence of these, the teacher is unable to support good communication and development for the child. An average deaf child passing out of school is not able to develop language and analytical skills, thereby impacting his or her development on par with hearing children.

Ideas

How can we create solutions to help disseminate deaf-centric pedagogies and visual content in the classroom ?

Lack of co-curricular activities designed for children with physical disabilities.

Insight

Co-curricular activities such as athletics, cultural events, science lab activities, etc. are essential for a child’s growth. It teaches a student the essential social skills and required to shape their personality in a holistic manner. They play an equally important role in the life of children with disabilities. However, most mainstream schools in India do not focus on co-curricular activities for children with physical disabilities. This is due to the lack of an inaccessible infrastructure, awareness amongst teachers on how to engage a child with disability in activities as their non-disabled peers, and limited resources available with the school.

Impact

Not being included in the co-curricular activities can have a debilitating effect on a child with a disability. They can feel isolated from other students and it deprives them of a sense of belonging, which has a negative effect on their confidence. An education is not just defined by its focus on the academic curriculum. Most learning happens during social interactions with peers such as while playing sports and participating in cultural activities. By denying children with disability the access to co-curricular activities, the education system is restricting their learning process and hampering their overall personality growth.

Ideas

How can we design solutions to make co-curricular activities accessible for students with physical disabilities?