Early Intervention for Disabled Infants

 
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$7,183
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Joining a Common Platform
Joining a Common Platform

In India participation of children with disabilities (CwD) in formal education environments, so far, is very limited.  Most CwD have difficulty in accessing even basic education.  In this context, the role that information and communication technologies (ICTs) can play in breaking up traditional access barriers and promoting equal opportunities is increasingly being recognized. The technology revolution has created new learning channels and formats that can enable CwD to access education with ease and effectiveness.  Harnessing this power of ICTs to build a strong system of inclusive education in India may ensure that all students, irrespective of their impairment, be in schools and learning.

This can be achieved only when organizations working for CwD are aware about the availability and usage of new technologies and tools.  At the same time developers also need to be in touch with these organizations for successful implementation and perfection of the tools.

The need for a common, meaningful platform to bring together the various stakeholders and enable information exchange on the issue prompted SAMADHAN and the Centre for Development of Advanced Computing (C-DAC) to organize a two-day national workshop on “Using ICT for Inclusive Education in India” on February 23–24, 2015, at India International Centre, New Delhi.  United Nations International Children's Education Fund (UNICEF) partnered this workshop, which was a follow-up to the UNICEF mandate for conducting a desk analysis on the use of ICT for inclusive education in India.

The workshop brought together stakeholders from concerned government departments, institutions, NGOs, researchers and academicians, IT engineers, special educators, parents, trainee teachers, and volunteers. It provided the participants, totaling over 80, the opportunity to share information and insights about the various ICT applications and aids for children with cognitive and physical disabilities as well as to share experiences of using innovative teaching-learning methodologies.

Among the speakers, there were persons with special needs who have been using ICT for their benefits.  They shared their experinces and empasized the need of using ICT.

The discussions drew on the rich and varied experience of the different stakeholders and presented an opportunity for exploring the diverse range of available ICT tools and solutions.  The presentations are available at https://sites.google.com/site/ictforie/.

The workshop, thus, evolved an improved understanding of the various issues, challenges, and opportunities for using ICTs for inclusive education.  The biggest achievement of the workshop lay in drawing out the information about available ICTs and practices from different scattered pockets and bringing it together on a common platform to enable learning, ideation, and adoption.

It also brought into sharp focus the need for supportive policy framework; use of universal design in educational materials and environments; research and development (R&D) on new ICT solutions and practices; and training and capacity building of special educators, among others. 

Opening Session
Opening Session
Mr. Abraham & Mr. Mitra Shared their Experinces
Mr. Abraham & Mr. Mitra Shared their Experinces
Spreading Knowledge
Spreading Knowledge

Guide to Parents: Cerebral Palsy(CP) Concept and Fundamental Principles in positioning and handling

SAMADHAN periodically conducts workshops for parents on topics related to various intellectual and physical disabilities. A workshop was conducted by SAMADHAN on 31st October 2014to create awareness among parents to understand what is meant by Cerebral palsy, its types and which part of brain gets damaged. The workshop was held to provide details on some of the most frequent positioning and handling used as interventions when working with children Cerebral palsy.

The workshop was facilitated by G. Hema Gowri, Special Education Consultant of SAMADHAN and Dr. Anju, Physiotherapist with SAMADHAN. The session was divided into three parts.

a)            Defining Cerebral palsy, causes, its types and role of brain

b)            Fundamental principles in positioning and handling and its use

c)            Use of adaptive aids and the consequences in using wrong positioning and handling

The workshop started with brief explanation of Cerebral palsy definition, causes and its types. More inputs were given on the affected brain parts in different types of CP. How the affected parts of brain affects child’s muscle control, muscle coordination, muscle tone, reflex, posture and balance; it can also impact a child’s fine motor skills, gross motor skills, and oral motor functioning. It was emphasized that the damage to the brain is permanent but it is non progressive in nature.

Dr Anju explained with examples the:

  1. Fundamental principles in positioning and handling with demonstration
  2. Precautions to avoid deformities in Children with cerebral palsy
  3. The use of positioning and handling and problems in wrong positioning and handling.
  4. Helping the child with their ADLs using Adaptive aids
  5. Problem-solving skills for everyday difficulties that occur

 

Post evaluation of the workshop shows that the Parents clearly understood that Cerebral Palsy is not contagious. It is neither a sickness nor a disease.  The damage to the brain does not get worse, but the effect on the body can result in progressive deformities. Although the damage to the brain cannot be cured, therapy and medical intervention can assist clients to maximise potential and enhance the quality of life.

 

Link for resources:    http://www.cbm.org/article/downloads/54741/Cerebral_Palsy_Toolkit_-_Part_2__Manual__English_.pdf

Anishka at Early Intervention Unit, SAMADHAN
Anishka at Early Intervention Unit, SAMADHAN

“Let me talk to Ma’am, please don’t interrupt” is what little Anishka says when we tried to ask the therapist some queries about her development.  This report is about a child who had spent 5 years of her life since birth in lying position with absolutely no appropriate therapy services accesible. Anishka, a 5-year-old bubbly child diagnosed to have spastic cerebral palsy came to SAMADHAN in 2013. It was during the survey conducted by Sarojini, a mother of a disabled child from the local community who is trained in identification of intellectual disability and counselling and is with SAMADHAN for the past 25 years, happened to meet Pooja Mishra, mother of Anishka, and explained about early intervention services and its benefits and when the family got convinced, they brought the child to SAMADHAN.  She had severe spasticity and had tendo achillies,  inflamed band of tissue that connects the calf muscle in the leg to heel bone due to gait abnormalities. The child was in pain and used to cry a lot and was unable to sit on her own or even propped. Major challenge was her obesity caused by long period of inactivity since birth.

To address this issue, the child was prescribed, KAFO, a long-leg device that spans the knee, the ankle, and the foot in an effort to stabilize the joints and assist the muscles of the leg. This was done free of cost and it reduced the pain considerably. Though because of severe spasticity, the improvement is slow in all extremities, the child has started bridging by herself.

Now with regular interventions, Anishka is able to come upto quadruped position that is crawling position and can maintain it as well.

The mother sits through the therapy sessions and the child is now given special education as well to improve her cognition and fine motor abilities. “I have now a lot of hope and I am sure Anishka will be attending nursery class like other children from next year”, says a confident Pooja and we hope she will.

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Yash with weight cuffs - strengthening muscles
Yash with weight cuffs - strengthening muscles

YASH

Two-year old Yash alias Chikku was admitted in early intervention unit of SAMADHAN last year was diagnosed by a premier institute in Delhi as having musclular dystrophy, a condition which leads to Muscular dystrophy (MD) is a group of muscle diseases that weaken the musculoskeletal system and hamper locomotion.

ash’ parents, Mamta and Rajesh were from Rajasthan came to Delhi and started a small daily needs store. Theirs is a joint family and in 2011, the whole household was rejoicing the birth of the first child, cute little Yash. As days passed by, family members were bit concerned about the milestones getting delayed and sought the medical advice from Paediatric unit of the popular government hospital in Delhi. Much to their shock, they were told by the doctors that the child has muscular dystrophy and will not survive beyond six months. The devastated family members were then approached by the case worker at SAMADHAN and that became the turning point for the little Yash and his family.

When Yash came to SAMADHAN, he was unable to get up on his own, could not stand without support. The child was started on occupational therapy programme with interventions like balance board activities, bouncing the ball in sitting position, slow vibration given for full body, exercises focussing W sitting to kneeling, weight bearing, rollator walking.

Now the child is 3 years old and started walking without support, at least three rounds within the early intervention unit at SAMADHAN.  The child still needs verbal prompting to do the activities and hence given psychological support to improve his response to stimuli.Yash’s aunt dedicatedly brings him to SAMADHAN and diligently follows the instructions of the occupational therapist at home as well.  The progress in Yash is very encouraging. “ I do not have words to thank the staff and professionals of SAMADHAN for making my son walk and bringing cheer back to our family” says Mamta, mother of Yash. Yes this will not be possible without those who believe in early intervention and support this project.

A big "Thank You" to all of you for contributing towards the new lease of life to these children. We would love to know about your thoughts on our early intervention programme.

 

Developing fine motor skills
Developing fine motor skills

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Meethi at the time of admission at Samadhan
Meethi at the time of admission at Samadhan

Two-year old Meethi was admitted to SAMADHANs   early intervention unit i2013. Her father, Pankaj is a shopkeeper and mother Rimpy is takes care of household chores. Being uneducated she finds it difficult to get a job while Meethi’s delayed development prevents her from taking on even housemaids jobs. The family came from Punjab to Delhi seeking  job opportunities as well as to find help for Meethi. But, once in Delhi, they realized that getting a job was not easy and life in big metropolitan cities difficult and competitive.  They could not even get any help for their infant daughter until many months later they came to SAMADHAN referred by  Mahila Mangal Charitable Trust in Dakshinpuri, which is a   low socio  economic community and  home to a large population of  migrant workers like Pankaj and Rimpy.

 When Meethi was brought to our center, the Pediatrician diagnosed her as deficient in Vitamin D, resulting in rickets and bow legs. She was therefore unable to sit up and was still flat of her back, needing support to be pulled up to a standing position. This was compounded by a general weakness. Therapy provided covered Neuro developmental technique and a variety of strengthening exercises using specific aids.

 Meethi can now stand independently; push herself up to sit, can  take weight on her knees and has started crawling. She is an inspiration and the prime motivator for hesitant mothers. With consistent therapy at our early intervention unit, Meethi now started taking tiny steps forward with help much to our delight.

Now Meethi started crawling
Now Meethi started crawling
Meethi
Meethi's first steps

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Organization

Project Leader

pramila balasundaram

New Delhi, New Delhi India

Where is this project located?

Map of Early Intervention for Disabled Infants