Families of children diagnosed with disabilities at birth or during early childhood benefit from the best information and support available. Those who live in rural or remote areas may have delayed services and supports due to a late diagnosis, or through lack of medical and educational expertise and support for older children and teens with intellectual or physical disabilities. It is much more likely that these populations are underserved or unserved. Without specific outreach efforts to rural and remote areas, it is unlikely that families will be aware of resources that will benefit their children's development, health, and general quality of life.
Visiting nurses and traveling early intervention specialists may provide therapy in rural areas, but families may be unaware of the services or how to access them. Due to cuts in county or state budgets where these services have been available, even babies and young children may be placed on long waiting lists. It may be more difficult to find professionals who are willing to live and work in remote or rural areas, so positions may be unfilled where they are funded.
Even in communities where early intervention centers are available, there may be transportation issues, financial challenges, or cultural issues that make them inaccessible to families who might benefit the most from associated services. Again, without directed outreach efforts, the greatest obstacle for families may be lack of awareness of how they can help their children live comfortably with the challenges they face, and live up to their true potential. Without interactions with other families, they may not be aware how important their advocacy is in creating adequate opportunities as their children grow up.
National advocacy organizations and regional parent support groups may not have enough participation or input from families who live in rural or remote areas to create or maintain a system to identify and offer services to newly diagnosed babies or children who have not yet enrolled in school. There may be an assumption that internet connections and online communities are serving populations who are distant from activities and opportunities available in the nearest small towns and cities.
Advocacy organizations who are concerned about underserved populations can create and distribute printed information that will find its way to parents of newly diagnosed through multiple avenues, through extended families, neighbors or friends. Because most parents of children with disabilities are 'civilians' before their sons and daughters are diagnosed, it is still very important to provide articles for mainstream newspapers and parenting publications to increase the likelihood that all our children get the best possible start in life.
Browse at your public library, local bookstore or online retailer for books like:
Babies with Down Syndrome: A New Parents' Guide
Amazing Minds: The Science of Nurturing Your Child's Developing Mind with Games, Activities and More
Australia - Stay or go? Country families' dilemma on children with disabilities