India is home to between 21-70 million people with disability.
Despite advanced Governmental policy, PwD are subject to harsh deprivation in many dimensions of their lives. Social attitudes and stigma play a leading role in limiting the opportunities PwD have for full participation in social and economic life, often even within their own families.
Layers of Disability in India
But PwDs are not one, homogenous group - there are varying levels and degrees of disability, that mean some individuals face greater challenges than others. Of all these, there is one group that is by far, the most marginalised and under-served within the broader Disability context – people with Multiple Disabilities AND Vision Impairment.
Children born with multiple disabilities and vision impairment (MDVI - as opposed to a single disability) are among the most vulnerable in the world and the least likely to receive an education.
Without reliable systems of identification and intervention, Children with MDVI and their families face a life of isolation, stigma and exclusion.
Existing health and education systems cannot accommodate the needs children with MDVI.
They are often left at home or in institutions, cut off from the education system. The majority remain isolated and often locked up at home.
What is MDVI
Unfortunately, India’s education, health and non profit systems are not equipped to meet the unique needs of this highly vulnerable section of society. There are many gaps in service provision which present insurmountable hurdles for Children with MDVI and their families:
Raj suffered from a brain injury which caused him to become deafblind. When his mother brought Raj to Muskan, she was very worried as Raj being six months old, was not able to bond or respond to her. Raj being a child with deaf-blindness is both visually and hearing impaired. However, Raj has some Residual sight that his teacher made maximum use of by teaching him through sensory activities like touch, smell, and taste.
In one of the activities of the Mother Toddler group, the teacher was singing a song and suddenly he was doing an action that had been taught to him earlier. We are very happy with the progress as he is responding very well and soon he will be advance from the Mother Toddler program to early intervention at Muskan.
Her mother was lost before she came to Muskan, as her child cannot speak nor hear properly. She didn't know how to communicate with the child, how to teach him things. It the mother's responsibility to teach her child and impart her child with knowledge that she has received. However a mother of a child with disability, she was in a pickle as she herself did not have the right knowledge about how to teach her child. Her earlier learnings become redundant as she has not been taught how to deal with a child who is both deaf and blind.
In the Muskan’s Mother Toddler program, we follow a holistic approach where we teach the mother about the disability of her child and the techniques and strategies to deal with her child. The most crucial stage of the development of the brain is between 0-2 years and in Muskan's mother toddler program we take full advantage of it by using a combination of techniques to teach both the Child and the mother.
If Raj had not received the early intervention in Muskan, he would have developed self-stimulating behavior which would have been detrimental to his later learning. He is understanding the world and responding to things that otherwise he would not have responded.
Looking at Raj's progress, her mother insists on the importance of early intervention. She now assures newly enrolled parents about the importance of timely and regular intervention at Muskan.
Her mother says she feels empowered in teaching her child and has become an unspoken ambassador for Muskan's Mother Toddler program.
Rachel (name changed), is a child with autism and completely blind, came to Muskan for admission when she was hardly two years old. However, at that time her parents were sceptical and didn't admit Rachel at Muskan. After four years, Rachel's speech therapist once again referred her to Muskan.
Rachel’s situation was challenging as children with autism are visual learners. When a child can’t see, the next sense we can depend upon to teach them, is touch. However in Rachel's case, she had tactile dysfunction which meant her senses were heightened to the point of discomfort or even pain. As such, Rachel couldn't perform any activity independently, she could only stand and go round in circles.
At Muskan, Rachel receives occupational therapy, physiotherapy, speech therapy, and special education. The combination of therapies and special education has given Rachel the right direction to explore things with her hands and she can even understand the characteristics of objects. With the intervention Rachel receives at Muskan, the integration in her brain which earlier was not happening, is now functioning.
After early intervention at Muskan, Rachel can walk on a balance beam, taking the instructions of teachers independently. Where previously she couldn’t understand basic functions, within four months we could see amazing progress. Today she can communicate not only with her mother but she can also follow her teachers' instructions accurately. She has even made a friend at Muskan and has started participating with her in games and activities.
Her mother is very happy that she is getting all the therapies under one roof and she can see the real difference in her child. Her mother says, "In hindsight, I should have admitted Rachel much earlier, as an earlier intervention would have had a greater effect on her progress - but better late than never.”
Neeta (name changed) being born prematurely lost most of her vision. Her doctor referred Neeta to Muskan, where we started her vision therapy. At Muskan, a customized program is designed to improve visual skills. With rigorous vision therapy, Neeta's movement of eye and vision perception developed. Gradually she started recognizing objects and her range of vision also increased. We realized that Neeta has good cognition and can be mainstreamed into regular school. When Neeta was admitted into a regular school, she was not able to cope up with other children. Her teacher was not able to understand why Neeta cannot read and write like other children. When Neeta's mother conveyed the problem to Muskan, we designed techniques in her vision therapy to teach her reading and writing.
We saw amazing results as Neeta started reading and writing and was even able to do maths. For a year, Neeta was doing parallel instruction where she would learn both at her Regular school and the school at Muskan. Due to her tremendous progress, we were able to mainstream her into regular school. Today Neeta has become fully independent and, we are constantly in touch with her giving her new strategies to improve her vision.
Speech Therapy Provides Future for Twins
When Deena and Diana came to Muskan they could not swallow nor make any noise to communicate with their mother. Born prematurely, Deena and Diana are twins whose father is a daily wage labourer and the mother is a housewife. When we advised their mother to admit Deena and Diana to Muskan, she was very anxious. As her husband is a daily wage laborer, even with fee concession they could not afford to send their twins to Muskan. They cannot afford to spend money even on travel. However, we realized that Deena and Diana needed Speech Therapy for their survival and development. Hence we gave them travel conveyance along with concession of fees so that Deena and Diana can be avail speech therapy and special education at Muskan.
Initially, we started working on the development of Oro motor skills which means to develop muscle inside the mouth so that they can swallow. Our Speech therapist gave them a home program where we gave them a toothbrush to sensitize the mouth. We are at the augmentative communication stage where we teach speech using pictures, sign language, and other methods. Today Deena and Diana can understand objects, alphabets and even understand words via pictures. Reaching the augmentative communication stage was important as the next step is the development of speech. We are eager to hear the first words of our twins and we are sure with Speech Therapy we will hear them soon.
Physiotherapy Enables Movement for Michael
John (name changed) is a child of intellectual impairment with low vision impairment and locomotive disability. John’s disabilities were so challenging that he required multiple therapies at the same time. His parents used to shuffle from one therapist to the other which placed severe financial stress on the parents. John was referred to Muskan by a hospital. Since John belong from low-income group, his parents couldn't afford the fees, therefore we enrolled him in our sponsorship program where his education and his therapies are sponsored by SBI Life Insurance. At Muskan, John’s needs were meet, wherein he received all the therapies under one roof. The combination of therapies and special education has positively impacted John’s development. Today he can sit and can use his hands independently. This was only possible due to the partnership of SBI Life Insurance with Muskan Foundation. By Supporting Muskan’s center at Goregaon, SBI Life is giving new lease of lives to children like John who weren’t able to access right opportunities.
Occupational Therapy Helps with Daily Living
Sameer (name changed) is a child of slow learner with vision impairment. Sameer’s developments’ is significantly slower than his peers. He also requires vision therapies in order to develop his vision. As this is a very challenging combination of disabilities, no school was ready to accept Sameer as they said they cannot teach him. Sameer was referred to Muskan Foundation by BJ Wadia Hospital. In Muskan, Sameer received special education wherein an Individualised Education plan was created by our Multidisciplinary team based on his needs. He is also receiving vision therapy which aided him to develop his ability to read and write. Due to the combination of therapy and special education, Sameer is growing positively in Muskan Foundation. He can read, write and also solve math problems. He is an enthusiastic child who loves to participates in all activities. When his father saw Sameer read for the first time, he was in tears as he never thought his child will be able to read after receiving so many rejections. We are grateful to Dalal Family Foundation who have been instrumental in supporting Special Education and Vision Rehabilitation Program at Muskan’s center in BJ Wadia Hospital. Sameer is growing positively and he will soon appear for Open schooling examination which is one step closer to Sameer completing his high school education.