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Exceptional Parent Magazine – June 2010 Issue

Voices from India: A Look into the Lives of Children with Special Needs & Their Families

By Pamela Hackett, MPT – Managing Partner, Pediatric Therapeutic Services, Inc.With Sunita Locklear, Director of Beautiful Gate Special School

Harsha is a “hugger.”  The first day I met him, he smiled and hugged me gently as we walked together into his classroom at the Beautiful Gate Special School (BGSS).  His mom lovingly tugged at his arm, pulling him away.  “I’m sorry,” she said, looking concerned that her son had once again crossed the line of physical contact in a society that is so modest that men and women do not routinely shake hands.  For parents of children with autism, teaching their children to follow the accepted social rules and customs is a daily challenge.  In India, where barriers such as extreme poverty, social policy, cultural stigma, and the caste system have tended to isolate people with disabilities, many children and their families struggle to integrate into their communities.  And like parents here in the U.S., they worry about their children’s future and who will care for them when they are gone.

Many Needs – and Few Resources

Learning about the lives of children with disabilities and their families in other countries can bring fresh perspective on where we are and how far we have come here in the U.S.  I had the privilege of visiting the BGSS in Mysore, India in 2008 and 2009, volunteering as a pediatric physical therapist to provide direct treatment, consultation and teacher training on behalf of Pediatric Therapy Services Inc. (www.pts-inc.net). PTS provides advanced therapy staffing solutions to school districts, charter schools and early intervention programs – and we were thrilled to have the opportunity to share our clinical expertise and best practices with BGSS.

The school was founded in 2005 by Special Educator Il Young Kim and Sunita Locklear, the mother of a child with a rare syndrome that resulted in developmental delays. They shared with one another their individual vision to establish a school for children with multiple disabilities, as there were no existing educational placements available in the city.  The school serves about two dozen students in a small, rented house.   Each year, they must turn away as many children as they admit because of lack of space.  

For many of the children, Beautiful Gate is their first experience attending school.  Prior to attending BGSS, most were confined in their homes and had few opportunities for intellectual or social development.  I recently got the following email from Sunita about a child whose family was desperate for a school placement:

“I had a little girl come for an interview with her mother from the slum close to our apartment.  She is 8 yr old, MR child who has never been to school.  Her mother told me that she locks her up at home all day while she goes to work because no one is willing to watch her and when she was young, the village doctor told her to bury her in sand up to her armpits to help correct her legs. So, she did that for 6 months!!! This is their version of physical therapy.  The girl is a little "wild" because of lack of human contact.  Not sure what to do.  She has severe behavior problems.  Please pray for wisdom.  Her name is Monica.” 

Stark Contrasts Across Countries

During my visit to India, I was overwhelmed by the contrast between special education services in Mysore compared to what we have available to students in the U.S.  In India, only 10% of children in need of special education receive individualized education plans (IEPs). BGSS has instituted an evaluation process and individual student goals – a progressive approach compared to many specialized schools. One BGSS parent said, “There are a few other special schools in the city, but in most places, children with disabilities are given training or schooling without much consideration for individual or specific needs or abilities.”

The result of this lack of identification and adaptation of the learning environment is that both teachers and students are left without many of the basic tools they need for success.  Additional training for regular-education teachers on how to work with children with special needs would go a long way toward making integration a more viable option in many schools.  But in most places, it’s just not a priority. Even here in the U.S., where my company delivers therapy services in dozens of school districts, it is difficult for us to get time with non-special education teachers for trainings because there are so many other priorities.

Today, there are over 3,200 special schools throughout India. However, these special schools can only serve only a very limited number of children.  Largely urban, the schools are often inaccessible to poorer families due to transportation issues and lack of ability to pay tuition. But most importantly, these special schools segregate children with special needs from the mainstream, thus developing a specific disability culture.   One parent explained, “My family does not does not degrade him for his disability. But other people look down on him. We don’t care about their remarks, even though it hurts sometimes.  We want him to become normal and we are trying to be patient with him.” 

While there are some resource room classrooms in urban schools, there are very limited services in the country’s rural schools.  Children who cannot function in the regular education classroom simply have nowhere else to go.  Consequently, like many of the children at BGSS, they are sent home to be cared for by their parents or relatives, with little or no opportunity for intellectual and social growth. Equally challenging is the fact that many school buildings are not physically accessible for children with wheelchairs or assistive devices, and teachers lack the training to incorporate children with significant disabilities into their classrooms.    

Unique Integration Challenges

For Indian families, the issue of integration is also complex for other reasons.  Education is highly valued and highly competitive in this country.  Children have often been segregated because of a fear of bullying in mainstream schools. The problem of bullying is not isolated to the educational environment, as many children who went to different schools may be isolated or bullied in their home neighborhood.1   

Another unique challenge for the families of children with disabilities in India is the social and religious stigma attached to their children because of their condition.  About 80% of all Indians are Hindus, and the core concepts of that faith, such as Karma and reincarnation, are a driving force in society.  The doctrine of karma states that one's state in this life is a result of actions (both physical and mental) in past incarnations, and action in this life can determine one's destiny in future incarnations.  In other words, when a child is born with a disability, it is a reflection of past wrong or sinful actions from the child’s and/or the parents’ past lives.   “Despite their social, religious, economic, political and geographical differences, there are two characteristics that are shared by most Indians. One is tolerance and forbearance, and the other is an engrained belief in tradition and socio-cultural norms.” 2  

These beliefs serve to reinforce a societal structure based upon caste and one’s karma or fate.  Life with a disability is viewed as part of someone’s destiny and serves to help define their place in the world.  The Indian people are loving and compassionate. But in a society where there is tremendous poverty and limited resources, some of these underlying assumptions about the origin of disabilities can limit acceptance in the greater community. 

Early Reforms are Just a Start

India has made some process with regard to its support for children with disabilities. For example, in the last decade, landmark legislation has been passed, such as the Persons with Disabilities (Equal Opportunities, Protection of Rights & Full Participation) Act in 1995 and the National Trust Act (National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability) in 1999. These laws demonstrate a commitment to moving forward on a societal level.

But despite legal reform, the burden of care for children with disabilities lies squarely on the family and community-based services.  In my meetings with a number of families, I witnessed a huge disparity with respect to available support services, depending on family income.   Professional families are able to engage a host of different therapists and other professionals to try to help their children.  In many cases, these mothers and fathers function as “case managers” as well as parents, trying to navigate the complexities of the educational and medical systems to get the assistance their children need.  One well-to-do family, whose son has athetoid cerebral palsy, actually designed a custom wheelchair and had it made by a local machine shop, since they could not find anything suitable in catalogs or online. 

But for poorer families, like many at BGSS, there are few choices – and poverty can be as isolating as the disability itself.  One 3 year-old boy that I worked with during my last trip to India had spastic quadriplegia, a severe form of cerebral palsy.  He arrived at the school nearly starved and with labored breathing, carried in his grandfather’s arms because he had no wheelchair or other adaptive seating, and rarely left his hut.  His parents worked as laborers and their large family shared a small hut in one of Mysore’s slums.      

His grandfather, who is a loving caretaker, was told by the pediatrician, “Why do you continue feeding and spending money on this child?  He is going to die anyway.”  But we found that with some adaptations to the boy’s food textures, as well as some simple positioning using a beanbag chair from a local store, we were able to help him to swallow his food safely. For him and many others, just a few minutes of helpful consultation with trained professionals can make a huge difference.  

Common Ground Shared by Us All

What struck me so clearly during my time with the children and their families at BGSS was how alike we all are, despite our geographic and cultural differences. The parents I met with want the same things that we want for our children here.  Schools and teachers in India struggle with many of the same issues that we have in the U.S: limited resources, diverse needs, and social/cultural prejudices.  I am confident that if I introduced an Indian and an American mother of children with Down’s syndrome or autism to each other, they would share their hopes and fears as sisters – even though they are raising their children on opposite sides of the globe.  When asked Mrs. Sowbhagya about her hopes and dreams for her autistic son, Ashmith, she said plainly, ”I want my son to be accepted by society.” 

And as in the U.S., when parents and teachers form a close, meaningful partnership, it creates a foundation for accomplishment that can overcome almost any obstacle. At BGSS, where parents must bring their children back and forth from home each day, they are a constant presence at the school.  What is working at home is shared with the staff, and likewise, strategies that are effective at school are brought home.  This was perhaps what the most important lesson I’ve learned in my mission trips to India – that communication and collaboration between parents and schools creates a bridge across the chasm of disability. 

It has renewed my commitment to educating parents, as well as teachers, in building understanding and creating supports for success.

1 The Disability India Journal, www.disabilityindia.org, April 2004

2 InfoChange Disabilities, www.infochangeindia.org. Disabilities: Background and Perspective by Rubin Lal, March 1 2010

“People with Disabilities: from Commitments to Outcomes.” The World Bank-  Human Development Unit, Southeast Asia Region,  May 2007.

For information about Beautiful Gates Special School, visit www.bgssindia.org

Pamela G. Hackett, MPT is a managing partner of Pediatric Therapeutic Services, Inc., a company providing advanced therapy staffing solutions to school districts, charter schools, and early intervention programs. To learn more, visit www.pts-inc.net.

Link to Article   (http://www.eparentdigital.com/nxtbooks/exceptionalparent/201006/Please Note: Exceptional Parent Magazine requires a paid subscription and login.