Nicole White said that for the first four years of her son Kyrie’s life he had an in-home nurse while she and her husband worked full-time.

“The very first day we brought him home from the hospital, at three and half months old, there was one waiting for us,” White said.  “It was such a dire need for him.”

Kyrie needed an in-home nurse because of his Short Bowel Syndrome, a chronic lifelong illness that was caused by an in-utero birth defect, gastroschisis, in which the abdominal wall fails to fully close during development, forcing him to spend the first months of his life in Hasbro hospital.

Now, the in-home nurses like the ones who took care of Kyrie are lobbying the state to increase the Medicaid funding that pays their salaries.  They are trying to pass House Bill H7670, which seeks to increase the pay rate for in-home nurses by 40 percent.

Ashley Sadlier, the director of Bayada Home Healthcare, one of the companies in Rhode Island that employs home nurses, said that the pay rates for in-home nurses in the state hasn’t changed since the year 2000, staying at a rate of $31.06 per hour while Massachusetts has increased to $47 per hour.

She claims that this has created a problem: in-home nurses are choosing to work in Massachusetts instead of Rhode Island, or choosing to work in hospitals or clinics, which provide higher salaries than the in-home rate given by the state.

She said that the pay comes through Medicaid, and it is a state legislative decision to increase or decrease the rate the nurses are paid. 

“Because the General Assembly hasn’t given the attention to this or made some type of change or investment in home care, nurses are choosing to work elsewhere,” Sadlier said.

White argued on behalf of Sadlier and other in-home nurses, saying that she and her husband, Garrick, might have gone on welfare if they couldn’t work their full-time jobs while Kyrie was growing up.

She also said that the nurses were instrumental in improving Kyrie’s health as he grew up, allowing him to eventually eat normal meals.  He learned to eat normally at the age of 3, Nicole said, and was still on IV-nutrition to make sure he got the right daily intake up until this past September, when he was taken off it.

Kyrie, now six years old and a student at Edgewood Highland Elementary School, is in good health and is “doing great,” according to his mother, but with his condition she said he could get sick at any time, specifically because he is at risk for sepsis.  He hasn’t needed an in-home nurse for the past two years, but could need one at any moment, she said, and with both his parents working full-time, they would once again rely on a nurse.

White said that when Kyrie did have in-home care, they went through “multiple nurses” because the nurses were constantly looking for better-paying healthcare jobs, and that made it tough for her family, because it took a while for each nurse to learn about Kyrie’s complex health needs.

Sadlier said that her company employs 165 nurses in the state.  She said that there is a nursing shortage nationally, which makes it tough to recruit in-home nurses because of the lower pay rate, and many of the ones they employ only work as in-home nurses on the side of their full-time jobs.  She said although she doesn’t know the numbers on how many nurses they’ve lost in recent years, the company sometimes isn’t able to help all the people who need care because they don’t have the available staff for it.

“To have a family member call, a mom desperate to get her baby home from the hospital for the first time, or a parent with another agency and they can’t get what they need, they’re going to lose their job, that’s emotional,” Sadlier said.  “It’s not just about money and finances, it’s about caring for people.”

She said that in-home nurses develop a special and important bond with patients because they are in their home for five to 10 hours at a time.

She expressed optimism that legislation will get passed in some form.

“I think the difference this year is that more families are unfortunately in the situation where they don’t have nursing,” she said.  “It’s about the families that are affected by this.  It’s about the mom afraid of losing job because she has to call out again because she doesn’t have a nurse. More people are speaking up this year, I do think people are listening.”

“As a mother and an advocate caregiver, I just really want to beg the state to have the reimbursement rates go up for the future of our children, for the sanity and well-being of the families and children,” White added.