When her 18 month old daughter was diagnosed with Rett Sydrome, Sharon Lutz devoted herself to researching the disorder and searching for resources that could help.
“I wanted to do everything I could to understand the disorder, which was then completely new to me, and to find out what help was available to our family,” Lutz told the Messenger-Gazette.
Frustrated by the lack of information available, she worked to establish the Somerset County Childhood Disability Coalition in Somerset, N.J. Working with representatives from several local organizations, the group developed a Childhood Disability Resource Guide [http://www.childhooddisability.com/]. The guide offers an extensive list of local disability rights and self advocacy information as well as support groups, transition services, education programs, and camps and recreational events.
“Children with disabilities can reach their full potential with early intervention and programs designed especially for them. Discovering what is available and then navigating the myriad of services to find the right one can be very difficult for most parents.” said Patricia Walsh, Deputy Director of the Board of Chosen Freeholders.
The much needed resource was the spotlight last week during “Disability Awareness Day” last week at a Sommerset ballpark. The day featured an awards ceremony where Legislatures awarded plaques to individuals, schools and organizations within the special needs community. Between innings, there was an exciting wheelchair race around the bases. Sharing the new resource with the community raised public awareness.
We are pleased to see organizations are enhancing access to information and resources for parents and other family members caring for children with special needs.
Does your area have a resource guide like this?