Website helps address special needs of children

Parents and caregivers who have children with autism or other developmental disabilities can use a new website to find resources and groups that can help them.

The Exceptional Lives website — la.exceptionallives.org — includes a how-to guide with information for every stage of a child’s life. And it includes tips on special-education services, Medicaid waivers, preparing for employment and transitioning into adulthood.

Parents answer a series of questions about their child, and the software creates a guide to address their needs.

The website features a resource directory so parents can find groups and services that fit their child’s age group and disability. The directory shows which agencies are available within a 100-mile radius.

Dana Fullington of Sulphur has a 9-year-old son who is autistic. She said the website is easy to use and provides “tons of information,” an important feature for parents and caregivers who have infants and toddlers with disabilities.

“When you first find out you have a child with special needs, it’s like you’re in a foreign country,” Fullington said. “You really don’t know what to do, and you stress. The more information I have and the more people out there willing to help me, the better.”

History

Sara Judson, executive director of the Community Foundation of Southwest Louisiana, said Baton Rouge officials identified gaps several years ago related to helping children who were on the autism spectrum.

The Baton Rouge Area Foundation began a study that took more than two years to complete. After finishing the study, the group decided to create a website. Using a grant from Matthew and Sherri McKay of Baton Rouge, the Boston-based nonprofit Exceptional Lives was hired to create the website.

“While they were working on the website, they decided to extend it throughout the state,” Judson said.

Judson said the Community Foundation partnered with the Baton Rouge Area Foundation to put Southwest Louisiana-based resources on the site. One of those resources is Families Helping Families of Southwest Louisiana.

Susan Riehn, executive director of Families Helping Families, said the website provides assistance at all hours when the agencies may not be available. “It makes you realize that you’re not alone,” she said. 

Assistance

Linda Jason is an adoptive grandmother of a 3-year-old child who has developmental delays. After starting with Early Steps — a state program that assists infants and toddlers with developmental delays — she connected with Families Helping Families.

“If I didn’t have Families Helping Families, I don’t know what I would do,” Jason said. “This was a whole new world opened to me. I didn’t even know this existed for me.”

Since then, Jason said she has mentioned the organization to other parents who have children with developmental disabilities. She said the Exceptional Lives site will hopefully bring more exposure to groups that can help parents who are struggling to find resources.

“That’s my goal now because right now it’s more word of mouth,” Jason said. “A lot of times it’s foreign to parents.”

Sabrina Allen said the site will benefit parents who have toddlers with developmental disabilities and are unfamiliar with which services are available for them. Allen moved to Lake Charles six years ago with twins, now 10, who have multiple disabilities.

“It’s definitely beneficial because some parents don’t know where to go,” she said.

Judson said the site will be updated regularly to include new agencies. The website also includes a help line and email service parents can use to get questions answered within 24 hours.

For more information on Exceptional Lives, call 844-354-1212.

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