The caregivers

It takes a strict routine and a lot of help to raise a family of special-needs children. Few know this better than Eric and Dennis Volz-Benoit, who have five.

Typical days involve feeding tubes, breathing treatments, medications and assembly-line showers, not to mention taking kids to school, making dinner and washing clothes.

"It's just kind of like a well-oiled machine," said Eric Volz-Benoit. "The key for us is routine. Everything is routine."

But routine only goes so far for the Springfield couple and their children, Zachary, 8, who has epilepsy and cerebral palsy; Tyler, 7, who has brain damage and autism; Jayden, 5, who has post-traumatic stress disorder and borderline behavior problems; and biological siblings Ryan and Mandie, 7 and 6, who both have PTSD.

That's where the Collaborative Consultative Care Coordinator Program — known as 4C, and where Eric Volz-Benoit works as a nurse — comes in.

The program helps parents and pediatricians manage medically complex children. Families are paired with a team of helpers, including a nurse care coordinator and a social worker who can make home visits. A child's medical information is loaded into a central site, or "cloud," so any specialists needed to check or treat any given condition can get what they need quickly and easily.

The program is a partnership between Boston Medical Center and Baystate Medical Center, funded in September 2014 by a three-year, $6 million federal grant under the Affordable Care Act.

Zachary is the only one who qualifies for the coordinated care at 4C. He uses a wheelchair and requires a feeding tube and oxygen; early on after coming to live with the couple in 2008, he was frequently in and out of the hospital.

Volz-Benoit credits Zachary with helping him "grow up a lot" and become a father to his brood of special children.

"No matter how cruddy of a day I've had, all I have to do is come home and get a kiss and see that child," he said. "He balances my life. I can't imagine not having him around."



 

Text from the AP news story, AP PHOTOS: For family of special-needs kids, special help by Susan Haigh and Charles Krupa.

 

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