Jasmine Moise picks up 2-year-old Aiden* and puts the toddler on her lap. It might simply look like a foster mother bonding with her foster son, but it’s much more serious.
“His heart is beating too fast. He needs to calm down,” Moise tells her sister Patrice, who is standing nearby.
A typical human heart has four chambers. Aiden has only three.
Moise continues to hold the 2-year-old, trying to keep him still. She keeps her hand on his chest over his heart — monitoring and keeping him safe.
Patrice and Jasmine are both registered nurses in Palmdale, Calif., but they’re also foster parents to Aiden and Mason* — two medically fragile toddlers. “Medically fragile” is the statutory term California uses for children with acute or chronic health issues that require therapeutic interventions and intensive care during all or part of the day. These issues can come as a result of a mother’s drug or alcohol use or because of other severe medical conditions or injuries. Medically fragile children frequently end up in institutional care in California’s foster care system; caregivers are often challenged to meet their serious medical needs.
The Moise sisters are part of a group called Angels in Waiting, a nonprofit made up of nurses who step up to care for medically fragile babies and children in foster care in California. With about 500 members, the organization helps guide nurses through the difficulties of Medi-Cal, the foster care process, and continuously working to get more counties to specifically recruit nurse foster parents.
In 2012, Los Angeles County had about 10 nurse foster parents. After working with Angels in Waiting, it now has about 60, but the need is closer to 100, according to Melissa Testerman, medical placement coordinator for the county’s Department of Children and Family Services (DCFS).
“The hard thing is finding nurse foster parents in the areas we need them, such as the city of Los Angeles and the South Bay,” Testerman said. “That’s where our [birth] parents are.”
Testerman said there are currently children in the county’s care who are ready for medical discharge but for whom the county has no placement set up. Without the availability of a nurse who can provide specialized service, these children are often left in institutional settings.
The importance of getting children out of institutional care and into a loving home environment is part of the reason Linda West-Conforti started the 14-year-old Angels in Waiting. It’s the smells of a home-cooked meal or the lick of the family dog that are so important to a child’s development, she said.
“A baby’s brain isn’t meant to have 35 sets of hands on it in a week,” West-Conforti said. “It’s meant to bond.”
The state has been moving in the same direction. It rolled out the Continuum of Care Reform effort in 2017, hoping to place fewer children in institutional settings like group homes and more with families.
Despite 2013 legislation that cleared the way for the state to better use nurses as foster parents, few counties have yet to opt into a way to provide home-based care for the state’s most vulnerable kids.
Medicine Starts Before Sunrise
At 6 a.m. Aiden isn’t awake yet but it’s already time for his first round of medicine.
The medicine goes right into Aiden’s feeding bag. They also check on Mason, who is also still connected to his pump — something he has to be connected to for 14 hours a day.
When the boys first wake up, all they want to do is start jumping and running, Patrice said. But they can’t.
The toddlers are restrained by their feeding pumps. Jasmine and Patrice try to make it as comfortable as possible, putting on some of their favorite movies, such as “Tarzan” and “Trolls.”
From there, it’s not uncommon for their days to start filling up with appointments.
The boys have occupational therapy, physical therapy, speech and early start, sometimes having to drive up to an hour for appointments. They also still have checkups with doctors and visitations with birth parents. And between all that they have to find time for the usual things, like haircuts.
Jasmine and Patrice joked that they both are now coffee drinkers. But they wouldn’t trade their new normal.
“They both have brought so much joy in my life,” Patrice said.
The day ends around 9:30 p.m. when Aiden and Mason are put into pajamas and attached back to the feeding pump.
Clocking in 24/7
West-Conforti’s decision to launch Angels in Waiting started when she met Sammy, a 2-year-old child in foster care who had been diagnosed with cerebral palsy and severe cognitive impairment. He had already spent two years of his life in the hospital and had never been introduced to food when West-Conforti picked him up.
“I knew God had a plan for him,” she said.
On her way home, West-Conforti and Sammy stopped by McDonald’s and went to Our Lady of Fatima Shrine — West-Conforti grew up Catholic and needed guidance.
Sitting there, eating McDonald’s and talking with her new foster son, she was inspired to do more for young children facing serious health issues, and Angels in Waiting was created.
But that was no easy feat. West-Conforti had to be with Sammy at all times.
“Being clocked in at home, I couldn’t clock in at the hospital because he was too critical,” she said.
West-Conforti quickly figured out why more nurses weren’t already doing this. Her stipend of $900 a month for being a foster parent — the same pay as a person who only took a short course and had no medical training — couldn’t cover all their expenses.
It was “an insult to my nursing license,” she said. “I got online thinking there must be another way.”
That’s when she found a program created in 1965 “that has laid dormant in every state across the country,” she said. The program, Early and Periodic Screening, Diagnostic and Treatment (EPSDT) In Home Operations, enables nurses to become foster parents and bill Medi-Cal for their nursing hours related to caring for medically fragile foster care children in their homes.
In 2013, West-Conforti helped advocate for Assembly Bill 1133, which gave “preferential consideration” to nurses when placing medically fragile children in foster care. It became California law later that year, thanks to her efforts.
Under Medi-Cal, nurses with two children at home could make $200,000 a year tax free thanks to the EPSDT program, West-Conforti said.
But all of that money is earned, she said. It’s not a job with nights, weekends or a lot of vacation days.
“We are clocked in 24/7 with these kids,” West-Conforti said. “We never take off that nursing hat.”
Counties Aren’t Recruiting Nurses
While there are success stories, West-Conforti said out of 58 counties, only Los Angeles, Kern, Riverside and San Bernardino counties have contacted her to implement the program.
“It’s just aggravating,” she said.
As California continues to focus on recruiting thousands of caregivers for its foster children, West-Conforti thinks medically fragile children have been lost in the shuffle.
In an email with San Diego County, West-Conforti was informed in February the county needs to “assess our current capacity to accept new resource families before committing to a partnership with your program.”
The original state policy sent out to counties three years ago instructed counties to partner with nurses for medically fragile children unless a relative was available. West-Conforti said that many counties have ignored the policy.
San Diego County does not track caregivers based on occupation, according to Lilian Nguyen of the county’s Health and Human Services Agency in an email to The Chronicle of Social Change. However, Nguyen said that the county has recently begun targeting medical professionals at three area hospital campuses for the care of medically fragile children.
West-Conforti said that without nurses, many medically fragile children entrusted to the care of the state end up in tenuous situations, like hospitals or other institutions.
She has a story about a 10-year-old boy who ended up in an emergency shelter for a year and a half in San Diego County, and another story of a child in Sacramento who was placed in an institution because a lack of a supportive home-based placement.
Michael Weston, a spokesperson for the California Department of Social Services, said the letter to the counties is the only plan for letting counties know about the bill.
But West-Conforti has found that’s not enough.
“Why is nobody calling me back?” she asked.
Beyond the Status Quo
Within days of being born, 8-year-old Cindy* was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), a respiratory disorder that results in respiratory arrest during sleep.
She was given a tracheostomy and G-tube, then spent the next eight years in a pediatric facility near San Jose, Calif. She had not been potty trained, was only fed through her G-tube and was put in a wheelchair despite being mobile, said Jeanie Koch, a registered nurse and foster parent.
Despite all this, when Cindy was 8 years old a new social worker was assigned to her and the social worker realized Cindy didn’t belong at the facility. She called registered nurses and foster parents Koch, 47, and her husband, Chris, 49.
“These kids don’t have to live at facilities,” Koch said. “There are plenty of kids who live with CCHS who live at home with parents who aren’t even nurses.”
Koch also had to learn the billing ins and outs of Medi-Cal and about ordering all her own supplies.
“I’d never done that, even as a nurse,” Koch said. “At a hospital my supplies are just in the supply room.”
Even still, Koch said, in moments of confusion with different systems it’s important to be able to call on and have the support of West-Conforti.
When Cindy came home things began to change quickly, and for the better. Koch removed her pulse oximeter from her foot, a tool often used in a hospital to monitor a person’s oxygen saturation, which had been attached to her for her entire life and severely limited her mobility. They also began looking at all 14 medicines she was taking.
“They made her way sicker than she was,” Koch said. “We had to heal her.”
The couple then introduced her to food, got her out of the wheelchair and potty trained her.
“I think if you didn’t have that medical background, you wouldn’t know,” she said. “You wouldn’t push the boundaries. You would just go with status quo and what they told you.”
Cindy turns 11 in March. She can now read, she’s ridden a horse, goes to school and does chores.
“I still don’t know how far she’ll go,” Koch said proudly. “We don’t know what she’s capable of.”
Koch is happy Cindy’s quality of life has improved, but it’s really Cindy who has improved the lives of the rest of the family, she said.
“I loved my job being a NICU nurse. I felt like I was doing something really good,” she said. “Now, I feel like I get to make a difference on a deeper level.”
*Cindy’s name was changed to protect her privacy.
**This article has been updated to include comment from San Diego County.