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PACER-India collaboration strengthens ties among parents of children with disabilities

Fall 2005
By Patricia Bill

Jo Shepherd and Paula Goldberg visit with a family at a national institute in India.

Jo Shepherd, left, and Paula Goldberg, PACER’s executive director, visit with a family at a national institute in India.

From Minnesota to India—no matter where in the world they live, parents of children with disabilities share a common bond: they want their children to succeed, and they work with hope and commitment to make it happen.

“That shared dedication is the foundation for a new PACER Center collaboration with organizations in India,” said Paula F. Goldberg, PACER executive director.

Four joint ventures are under way to bring information to parents and professionals on both sides of the world. They include

  • An international Web site giving resources for parents of children with disabilities
  • An exchange of Indian and American parent leaders to share experiences and foster partnerships
  • A center on assistive technology for children and adults with disabilities in India. It would demonstrate assistive and augmentative technology and encourage further development by U.S. and Indian corporations.
  • A conference on technology to introduce state-of-the-art assistive technology and assess the needs for children and adults with disabilities.

IBM and others are involved with the collaboration.

The projects resulted from a February 2005 journey to India by Goldberg; Margaret Jo Shepherd, retired Columbia University professor; and Paul Ackerman, international consultant on disability. They visited government offices, disability-related organizations, agencies, and sites around New Delhi, Hyderabad, and Mumbai, including

  • India’s National Trust (for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities)
  • the Indian government’s institutes for hearing impairment and cognitive disabilities
  • an inclusive school for children who have and do not have disabilities
  • a farming program for young men with cognitive disabilities
Jo Shepherd, Paul Ackerman, and Paula Goldbert met with Aloka Guha

From left, Jo Shepherd, Paul Ackerman, and Paula Goldberg, met with Aloka Guha, chairperson, National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities.

“Whether we were making presentations to high-ranking government officials or visiting with parents of children with disabilities, we were treated with great warmth,” said Goldberg. “The people of India are very gracious. They were interested in the United States and so hospitable.”

India is a nation of contrast—from the intricate arts of ancient cultures to state-of-the-art technology, from urbane sophistication to rural isolation, and from highly educated professionals to homeless children.

“All these conditions exist in the second most populated country and the largest democracy in the world. There are many lessons to be learned from India,” said Ackerman.

Many international experts believe India is on the way to becoming an international super power. Companies from many other nations have established facilities in India. The gross domestic product is forecast to grow by 7 to 8 percent annually through 2010.

India works hard to serve people with disabilities, said Goldberg. The visiting Americans were asked to share their expertise and opinions, but, in actuality, the three learned much from the Indian parents and professionals, she said.

A look at India’s government structure explains the position of the officials with whom the three Americans met and are working.

India is a democratic republic. The Ministry of Social Justice and Empowerment, which reports to India’s Parliament, is at the apex of India’s disability system. It is accountable for implementing three disability laws:

  • Rehabilitation Council of India Act (1992)
  • The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act (1995)
  • National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities Act (1999)

The Ministry oversees six national institutes that work with the welfare and rehabilitation of people with disabilities. The institutes work with matters ranging from programs for children to teacher education, focusing on specific disabilities. A seventh institute, preparing for the education and treatment of children with multiple disabilities from throughout India was recently announced.

The National Trust is a 22-member, statutory, autonomous body under the Ministry. It helps people with disabilities and the organizations that serve them. It also has the responsibility to strengthen families in crisis and provide for legal guardianship. Through voluntary organizations or parent associations, the Trust sets up local resources and services where people with disabilities can receive care and training. The National Trust will collaborate with PACER to establish the international parent resource Web site.

Goldberg, Shepherd, and Ackerman met with many officials of the Government of India. They included Jayati Chandra, Joint Secretary of the Ministry of Welfare and the chief officer responsible for all disability programs; Aloka Guha, who chairs the National Trust board; and directors and senior staff of the national institutes devoted to issues in hearing impairment and cognitive disabilities.

In addition to exchanging ideas, the three Americans made presentations. Goldberg spoke on parent centers and their services and resources to parents across the United States, as well as the history of the parent movement and its effect on systems change.

In turn, the group learned how Indian parents were instrumental in lobbying for establishment of the National Trust and other laws and how they started schools, supported employment sites, and created services for their children with disabilities.

“I loved India,” said Goldberg. “It was so exciting to learn about the fantastic progress it is making to help children with disabilities. I was delighted to confirm that despite the differences in geographic location, culture, and experiences, parents in India and the United States are much the same. We all want what is best for our children.”

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