Parent Pathways

New social network allows parents of autistic kids to connect

November 25, 2013 

Denise Freeman DeCandia has been working with autistic kids and their families for nearly two decades.

She’s dealt with all sorts of issues, from insurance snafus to therapy obstacles. But she never thought social media would present a problem – or a solution.

DeCandia, co-founder of the National Autism Network in Cary, is also a behavioral analyst therapist with the Carolina Center for ABA and Autism Treatment.

At a staff meeting one day, several therapists said families were trying to “friend” them on Facebook.

“The policy with our organization was to let parents know that was not acceptable; the parents were quite upset with that,” DeCandia said.

Recently, DeCandia and her life partner and National Autism Network co-founder, Cari DeCandia, discovered a way parents could connect on the Internet – with each other and with their children’s medical providers – that complies with federal HIPAA regulations.

Established in 1996, the Health Insurance Portability and Accountability Act requires patients to give written consent before providers release medical information. The legislation addresses the security and privacy of health data for all Americans, even minors between the ages of 12 and 18.

The National Autism Network recently launched a social network that’s HIPAA compliant.

“Professionals can actually post a file to a child’s network, and it doesn’t go up onto the network without the parent publishing it. It’s very clear to the professional that he or she is not violating any ethical guidelines or standards,” Denise DeCandia said.

The social network allows parents to connect with each other. It also allows medical professionals to access files from other professionals or to easily check in with a parent about a child who might have started a new medication or therapy.

“The beauty of the social network is that the parents can have a profile for themselves to be able to connect with other parents across the United States, but then they can also set up a HIPAA-secure private network for their own child and invite that child’s providers in,” Denise DeCandia said. “That’s where the sharing of information comes about and connecting all of the providers in one space and really managing the care of the child.

“Those are things I’ve heard over the years, parents asking me, ‘How do I connect with the other parents you serve?’ or ‘How can we develop a support group to share information?’” she continued. “There are a number of treatment approaches that have been presented over the years, and parents try to find out as much as they can about those approaches and if they will help their child.”

A basic membership to the National Autism Network is free; the social networking service is included in a premium membership, which costs $9.95 a month and includes storage space for medical files and access to webinars and other events.

Autism Spectrum Disorder is the fastest-growing developmental disability in the U.S., affecting one in 88 children, according to recent statistics from the Centers for Disease Control and Prevention.

For more information on the National Autism Network program, visit www.nationalautismnetwork.com.

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