A group of parents recalled story after story Wednesday morning of the many questions they faced when their child was diagnosed with a developmental or autism spectrum disorder.
Finding answers was often difficult, they said, as they were overwhelmed by the heaviness of the diagnosis and had to wade through information that did not apply to them or their families to find answers about schools, treatment plans and more.
A website that went live Wednesday is meant to help parents, family members and friends of both children and adults with developmental and autism spectrum disorders find answers about how to care for them. The website, called Exceptional Lives at la.exceptionallives.org, maps out every school, health care provider and other resource providers across Louisiana that cater to people with developmental disorders.
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When people go to the site, they can choose from a series of options that guide to them to resources appropriate for if their child. They range from resources for people with children who have recently been diagnosed, to those who suspect their child has a development disorder, to people who want to find supportive housing and other help for adult family members, to those who need to find providers who accept Medicaid and more.
"If you get stuck, 24/7, there is a phone line," said John Spain, executive vice president of the Baton Rouge Area Foundation, which has conceived and pursued creation of the website over several years. "No matter where you are in the state, after today, if you need help, this is the website."
The Rev. Raymond Jetson marveled at how much has changed in the past 27 years, as he recalled the confusion he felt shortly after his daughter was born and a doctor pulled him aside to tell him his daughter had Cornelia de Lange syndrome. It is a developmental disorder that shares some similarities with autism, though Cornelia de Lange is a genetic disorder.
"For months and months, that was all my wife and I had to look at — a sheet of paper that said, 'life expectancy: six years,’ " Jetson said.
His daughter, J'erica, turned 27 earlier this month.
Providers who work with developmentally challenged children said it's especially convenient that the website is always available, as opposed to making working parents schedule appointments to obtain resources they can now access any time.
The website includes a resource directory where people can type in their ZIP codes and find therapy sessions, clinical services, educational opportunities and more within a certain distance of where they live. And the site has options to help connect families with attorneys who specialize in helping families of disabled people, sports programs and summer camps, sibling support groups and more.
At 2 years old, Crossland Pettit wasn’t exchanging smiles or communicating with her family.
Those with questions about health insurance, Medicaid waivers, Supplemental Security Income benefits and other tricky issues can also find "plain language" how-to guides on the site. Each guide begins with questions that tailor the answers based on factors like the person's age, disability level and health insurance or Medicaid coverage.
Jamie Tindle, the executive director of Families Helping Families of Greater Baton Rouge, said everyone who works for her organization has a child or family member who is developmentally disabled. It took 19 years and a genome sequencing for her 22-year-old year old son, Alex, to be diagnosed with Cardiofaciocutaneous syndrome, known as CFC.
Like Jetson's daughter, Tindle said her son shares some characteristics of autism though his developmental disorder is also a genetic disease.
She said the website will be a helpful tool for families to learn about her organization, as well as the rights that they and their children have for access to education and other resources. The website means "we can spend more time supporting that family," Tindle said.
BRAF used a $150,000 donation from All Star Automotive Group's Sherri and Matt McKay to hire the Boston-based Exceptional Lives team to build the website.