First Connections: Malenie’s Story

Everyone has visions of their life as a parent when they find out they’re about to have a baby. Little things like how the nursery will look, what they want their child’s delivery setting to feel like, or whether they’ll use cloth diapers or not.

No parent envisions their first days with a newborn as easy, but for infants born with medical complications who require a 43 day stay in the NICU and a feeding tube, it can be overwhelming.“We’re really thankful that he even made it home,” Malenie Estevez says of her newborn son Kye. “I want to give Kye the best chance possible. If there are programs out there to help, I will absolutely accept that help.”

Kye was born with Dandy Walker Malformation, meaning he’s missing a portion of his cerebellum. He requires a G-tube for nutrition, and he will likely face coordination and developmental issues down the road.

That’s why Estevez was eager to accept First Connections support when it was offered to her at Women and Infants Hospital by a social worker. Hospitals and pediatricians rely on nonprofit agencies like FSRI to provide these types of in-home supports, as they themselves aren’t set up to take on this level of assistance.

Despite being a nurse herself, Estevez knew she wasn’t fully equipped to understand Kye’s complex needs alone, so saying yes to the offer was easy to do.

“I’m really for the supports that [First Connections] offers. The program’s longevity was the main thing I was interested in. I’m a nurse myself, but especially for people not in the medical field, I think it’s really helpful to have a resource like this to ask questions to make sure you’re doing everything correctly,” Estevez said.

They had their very first visit with First Connections nurse Deb Quinton just last week. They spent over an hour together at Estevez’s home, talking about how she and her son are feeling, and going over Kye’s case together.

“She was super open during our first visit, she broke down what First Connections offers, and also offered other resources,” she said. “Kye qualifies for SSI so she gave me a phone number to follow up and some resources for Early Intervention services. Honestly, I couldn’t ask for anything better,” she said. “It was awesome.”

Moms and babies like Malenie and Kye are able to receive this level of newborn support through First Connections providers like Family Service of Rhode Island, and at no cost to them. But the state’s established reimbursement rate for human service workers, including home-visiting First Connections staff like Deb, hasn’t been raised in 22 years. In those 22 years, First Connections care requests and coordination costs have quadrupled, yet the reimbursement rate has remained the same.

This nonprofit workforce crisis is dramatically shrinking the pool of qualified staff available in our state, and could eventually lead to a complete lack of providers able to maintain this high-impact service for at-risk babies. In the last 22 years, 4 agencies have closed their First Connections programs in RI because of severe funding gaps, and only 5 remain—including FSRI’s. A petition has been created to convince legislators of the importance of raising rates.

“Everything is going up in price, why shouldn’t the state meet that as well?” Estevez says. “It’s such a great support. It would be such a shame to let it disappear. Will they really let that happen?”

(For more information, read this article in the Boston Globe)

Previous Nonprofit Workforce Crisis Testimony: 11/22/2021