Online resource, Exceptional Lives, helps those with disabilities find services they need

May 21—As a Louisiana legislator and high official in state departments covering health and disabilities, Raymond Jetson was better connected than most parents. That did him little good when his daughter was born almost 31 years ago with developmental issues.

"It was the great challenge," Jetson said. "Identifying a place where families could get consistent information in a way that related to them and being able to point them in directions, being able to help them answer important questions has remained a very serious challenge for people with disabilities and their families."

An online resource called Exceptional Lives is answering that challenge.

Started in Massachusetts in 2013 and operating in Louisiana since 2017, Exceptional Lives provides free help finding the closest doctors, nonprofits and other organizations to assist those with a wide range of disabilities: autism spectrum, ADHD, cerebral palsy, muscular dystrophy, intellectual disability, Down syndrome and spina bifida.

The website helps people cut through the clutter of internet searches to find the most relevant services described in the clearest language.

Exceptional Lives CEO Anne Marcus, who had been a financial portfolio manager, had a son who suffered a prenatal stroke and was born with a form of cerebral palsy diagnosed when he was 9 months old at Boston Children's Hospital. Neither Marcus nor her husband had any experience with disabilities, and even though she thinks the hospital was outstanding, it provided her with little information about how to find the best care for her son.

"We had no absolutely no idea what to do," Marcus said. "I didn't have a support system, and I was working a very difficult job. Ultimately, I kind of figured it out, but I definitely would have liked to connect my son with services much earlier."

Marcus shifted careers to work for a research consortium that dealt with autism and other brain issues. The consortium provided people to help clients find the services they needed, but the families had to show up in person to receive the assistance.

"As a working mom, having to come into a hospital when my son already had a lot of other appointments was really difficult," Marcus said. "I also noticed that most of these navigators seemed to operate off the same piece of paper in order to get people advice: You should go here; you should go there. I thought if I could do something online, that would be really helpful to families."

That led her to co-found Exceptional Lives. It might have stayed only in Massachusetts but for Jetson's intervention.

Marcus was accepted to Harvard's Advanced Leadership Fellow program in 2012. Jetson had been a fellow in 2010, and he began inviting later ALF members to visit Baton Rouge in hopes of inspiring innovative solutions to the city's problems. Marcus went on several such visits, and after Jetson learned about Exceptional Lives, he connected her with the Baton Rouge Area Foundation as a potential funding source for starting the program here.

Conducting a focus group in Houma to find out what parents of children with disabilities need, Marcus met Jackie Snyder. In addition to wanting information to help her daughter, Snyder also was looking for a job. Marcus hired her to direct the Louisiana program, which she now does with assistants Marjunique Louis and Christina Kozik.

Snyder's daughter has ADHD and some of the sensory issues common to children with autism.

"If you Google some of these words like autism, you're going to just get inundated with so much information that really doesn't necessarily apply to you," Snyder said. "The only reason I got the information I got for my child was by word-of-mouth. I happened to have connections with the right people. I was lucky."

The Exceptional Lives staff identifies all the Louisiana resources that work with the affected groups, which doctors are accepting new patients, whether they accept Medicaid and making sure the links all work and the information is up to date. The website allows people to search for resources that are available within various distances of their Zip code.

Even though it's a Massachusetts- and Louisiana-specific website, Exceptional Lives gets calls from Texas and other states who struggle to find the information — an indication that it's meeting a need.

"The only feedback I've gotten from stakeholders whose opinion I trust ... think that it is a significant value add to the Louisiana infrastructure," Jetson said.

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