K.C. is 16 years old, was born in Arkansas and now lives in Virginia and has enough credits to start community college.  She’s bright, articulate and has a ripping sense of humor.  What she doesn’t have are legs.  K.C. was born with spinal agenesis.  That hasn’t stopped her from participating in sports, attending school, and driving her pick up truck wherever she chooses.  I learned all this in an online conversation with K.C. and another friends of hers in a disability chat room one recent Sunday afternoon.  I learned a great deal in that conversation, but one of the most amazing facts was this: Until two months ago, K.C. had never met another person with spinal agenesis or even a double-amputee.  All that has changed since K.C. opened a chat room on MSN and her world became both larger and smaller in one fell swoop.  K.C. created a “community”.  Perhaps she believed in the idea of “if you build it, they will come”.  Maybe she was simply looking for the opportunity to talk with other teens or adults who confront the same issues and challenges she faces every day.  Whatever her reason, she found a home online.

            In his book, “The Virtual Community”, Howard Rheingold relates his personal story handling a minor emergency at home by connecting with a physician friend on one of the first online communities, San Francisco’s The Well. With the emergency handled, Rheingold realized the power of the virtual community and has built a career reporting on and participating in a number of online networks.  His work and the work of other pioneers in online communities have built a solid foundation for the future of networking via the computer.

            The definitions of ‘community’ are as varied as the number of people who attempt to define it.   Historically, we have seen ‘community’ as a gathering of people who are geographically close.  With the shrinking of the world via the World Wide Web, the idea of ‘community’ has come to mean a gathering of people who share the same interests or issues, providing information, conversation and support to one another.  Online communities have grown into both commercial and social networks.  With the availability of free or inexpensive online services, almost anyone can find several communities with whom they will ‘fit’.

            One of the many valuable networks that have sprung up with the easy access to online services is the social and supportive network that has grown around the issues of children with disabilities and/or special health care needs.  In a study conducted by the Indiana Parent Information Network, parents of children with special needs identified current and accurate information and peer support as two essentials they lacked.  Today, the advent of online services and virtual communities can bring those sought after essentials to families at the time needed and in the most comfortable place, the family home.  The immediacy of the Internet brings to parents and providers the most current information on a disability therapy or a health issue.  The scope of what is truly ‘world wide’ in the World Wide Web allows interested parents to network with other parents who share the same challenges and issues.  In many instances, adults with disabilities can assist family members in knowing what their children will face as they grow up.  As Brenda, a retired telephone operator living in South Dakota who has physical challenges as a result of her mother having taken thalidomide, said, “When I was growing up, my mother didn’t have a way to know anything.  Today, I can help other parents understand what their children face.  I wonder how my life might have been different if the Internet was around for everyone thirty years ago?”    Brenda just opened a chat room on MSN specifically categorized to link up with other people who share her disability.  She’s excited about the prospects of finally talking to people who know exactly what she’s going through.

            The possibilities for making connections exist not only for parents and family members, but also for teachers and service providers who work with children with disabilities and special needs.  Just as each child is unique, the issues handled by professionals are equally individualized.  No one can learn all they need to know before entering the field.  Often an issue is raised and an answer or strategy is needed in short order to deal with that issue.  The Internet and the availability of ‘just in time’ training and networking opportunities offer specialized and easily obtainable assistance to these providers.

            There’s no question that the possibilities are endless.  MSN has over 500 disability specific communities and chat rooms.  Yahoo maintains at least 100.  The magnitude of information and the number of web sites can make searching for the best place to jump on the information super highway an overwhelming task.  United Way of the Wabash Valley has funded a Highlighted Grant Project called First Network Online (www.firstnetworkonline.com).  This web site points the direction to a local on ramp for families, teachers and providers who live in the Wabash Valley.  The project is a partnership between Hamilton Center’s First Steps for Families program, Covered Bridge Special Education District and United Cerebral Palsy of the Wabash Valley.  First Network Online offers information on specific disabilities; Indiana’s First Steps early intervention system; special education and school aged issues; information for parents, teachers, and providers; as well as links to local and national resources.  The project team hopes to have input from parents and teachers as to what they’d like to see on the First Network Online web site. Suggestions can be sent directly from the web site.  The development of several specific online communities is underway.  Parents and providers are encouraged to visit the site and join if interested. 

As with any community, an online community is only as strong as its citizens.  Community members have the opportunity to shape a network that meets their individual needs as parents, providers, or teachers.  Communities can grow and expand to become whatever helps children to become active members of their own communities.  The possibilities are endless if we bring all the available resources to the table.  Online communities are one more such resource.  Who knows, as Brenda said, maybe everything can be different for the next generation of children with disabilities and special health care needs.