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National Information Center for Children and Youth with Handicaps.


Like so many other mothers, I learned about disability issues, programs, services, support groups, medical services, insurance and education through the school of hardknocks. The old expression "necessity is the mother of invention" applies. I called every number in the North Virginia yellow pages under schools: pre-school, kindergarten and private. I talked to anyone who would listen, filled notebooks full of names, phone numbers and comments. After three years of this, I had put together a working list of people I could call when I needed information. I knew who to call about recreation, toys, child care and medical needs.

I did not even know two and three-year-olds could get help from the public schools. When I stumbled upon the local "child find" person at a toy lending library, she explained about testing, eligibility, placement and then showed me information on several possible preschools for my son. After years of searching, I was finally on my way. But I had found my way by luck. I think the years of phoning and talking to everyone taught me a lot, but the help I needed was there all the time -- if only I had known who to call.


There really oiught to be one central place a parent can call to get informatin, I thought. Apparently, everyone else thought so too. Since 1982, the National Information Center for Children and Youth with Handicaps (NICHCY) has been collecting and sharing information and ideas that are helpful to children and youth with disabilities and the people who care for and about them. The Center answers questions, links people with others who share common concerns, publishes newsletters and issue papers, and generally helps the information flow between the people who have it and the people who need it.


It is not the staff at NICHCY know everything there is to know about all disabilities, all children, all school systems and all states -- but they do know who knows. NICHCY serves as an exchange network keeping track of all the organizations -- national, regional, state and local -- who are concerned with disability issues. NICHCY staff members network with experts in special education, educational policy, parent advocacy, parent training, teacher training, medicine, social security, transition, employment and supported employment, housing, physical therapy, occupational therapy, speech therapy, adaptive physical education, health insurance, as well as with professional associations, writers, periodicals, model programs and all the people, across the country who have ideas on how to make things happen for children and youth with disabilities, their families and the wide range of professionals who work with them.

This means that NICHCY works to collect and then distribute materials which are considered both useful in content and written for a general audience. Through NICHCY, individuals, small groups, large organizations, researchers, educators, other service providers and advocates share information on current practices and issues in the disability and special education fields.

The staff at NICHCY is made up of parents of children with a variety of disabilities and professionals with training in education, health, law and other fields. Together, they understand the questions being asked and know the issues. They answer the questions that come into the Center, send appropriate materials, refer inquirers to people in their home states who work in the field and connect families with information and/or support groups in their communities.


Some requests are answered with printed materials, disability fact sheets, information packets and lists of local organizations and phone numbers. More complex requests may be answered by a personal letter explaining the issues and resources available. In some instances, a NICHCY information specialist may phone the inquirer directly to discuss his or her questions and possible solutions.

Other staff members are available to provide technical assistance to organizations who want to expand their resource collections or increase their public relations and distribution capacity. NICHCY staff participate in conferences around the country -- speaking on disability issues, information services and databases, parent issues and family concerns, national and local resources and the process involved in identifying resources.

NICHCY also hears from many professionals, both in the special education field and others. Special educators contact NICHCY for referral to model programs, to get information on parent/teacher collaboration, to get disability fact sheets, to learn more about low incidence disabilities and other such questions. The Center hears from regular education professionals who have students with disabilities in their classes and are looking for information to help them more effectively teach and socially integrate these sutdents, while increasing their own knowledge of disabilities. Professionals outside the education community -- social workers, medical personnel, religious leaders, community policy people, recreation specialists, travel and transportation providers and the like -- also write. Information sent to professionals further increases and enhances the NICHCY network.

It is the belief of NICHCY that solutions come from working together. This is interagency collaboration in its truest sense -- everyone working together to contribute his or particular area of expertise and perspective to develop solutions which involve all people in a community at all levels, from infant programs through school and making a smooth and successful transition to employment and independence.

As a parent of two sons, 12 and 14, with disabilities, I have worked with the NICHCY team now for five years and have found it to be very interesting and rewarding. There are two outstanding characteristics of NICHCY of which I am particularly proud. First, after years of experience, we have received literally tens of thousands of requests from families, special education professionals, medical professionals and professionals from all over the country and from all walks of life. We KNOW the questions and understand the implications of what's being asked.

Secondly, when a person contacts NICHCY, the information given reflects the full range of options available. NICHCY networks with ALL other organizations and competes with none. NICHCY has no political stand, no disability philosophy, no products to sell and no partialities or preconceptions on how things should be done or not done. We see as our mission to full provision of all information available to allow the inquirer to make his-her decisions based on the information provided.

All information and services provided by NICHCY are free of charge. Single copies of all publications are distributed free and subscriptions to our two periodicals, New Digest and Transition Summary are free. You can call NICHCY for free at (800) 999-5599 and leave a message on our 24-hour recorder and we'll get what you need. We may not be able to come by for coffee and talk things over, but we can refer you to someone who may be able to do just that.

So, after years of wondering why there is no single number to call to get information on who does what, where and with whom, now you have the answer. The National Information Center for Children and Youth with Handicaps is THE national information center which can answer your questions and refer you to the many excellent resources in your state and community.

Susan Ripley is Deputy Director/Information Services Manager for NICHCY She is also a member of the Citizen Advisory Board for Special Educatioin in the City of Falls Church. Ripley holds a bachelor's in English and educatioin from Miami University in Ohio and a master's in radio and television from the University of Maryland. She lives in Falls Church, Virginia, with her husband, Scott, and two children, Alex, 15, and Joe, 12. Both of her sons have a rare metabolic disorder.
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Author:Ripley, Susan
Publication:The Exceptional Parent
Date:Jun 1, 1990
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