
Liam Elie, 11, plays with his 15-month-old brother, James, at their home in Minot on Jan. 24. Liam and James are two of five sons of Kristin Elie, left. Daryn Slover/Sun Journal
MINOT — James Elie was born three weeks early, requiring him to spend a week and a half in the neonatal Intensive Care Unit, according to his mother, Kristin Elie. Breathing for him was laborious so he was placed on oxygen and his blood sugars had dipped.
When he came home he remained on oxygen until he was 6 months old, she said. For a little while he also needed a gastrostomy tube to help give him nutrients. Sometimes when he gets sick he still requires oxygen.
Born with Down Syndrome, his 1-year-old body has to work harder to make up for low muscle tone and other physical struggles, she said. He also suffers from kidney issues, which he has already had two surgeries for, with another scheduled.
“He’s been quite a champ — toughest guy I know,” Elie said.
Her child is just one of the many children receiving in-home skilled pediatric services from Andwell, which is sounding the alarm on behalf of families that could be at risk of losing access to these much-needed services if the MaineCare reimbursement rate does not go up.
Late last year, Andwell announced that it had to end services for 96 of its pediatric patients in certain communities because the MaineCare reimbursement rate was not covering the entire cost of services, putting the financial viability of the whole health system at risk.
Andwell’s skilled home health care services are billed to MaineCare through a fee-for-service model, according to Andwell CEO Ken Albert. The health care organization expects to have a large financial deficit because of the low fee-for-service rate in fiscal year 2025.
Projected revenue from MaineCare’s fee-for-service reimbursement to Andwell in fiscal year 2025 is expected to be about $1.3 million but that is far below the projected $2.2 million in direct care expenses it expects to incur, leaving a financial deficit of nearly $900,000, according to data provided by Albert. It also expects to incur an additional roughly $1 million on top of that from indirect expenses.
In August, Andwell proposed to the state a funding model to financially supplement the fee-for-service rate for in-home pediatric services in programs across the state until the state can increase the MaineCare rate. It includes shifting money from the state’s designated unused healthcare transportation funding to pediatric in-home services, he said.
As of January, Andwell still had not heard a response from the state about its proposed plan, Albert said.
Albert does not have a lot of hope that the proposal will be seriously considered as the governor is advocating to make further cuts to health care funding to fill a budget gap — to the chagrin of health care and patient advocates.
He has been frustrated by a state and federal health care funding system that has struggled to keep up with inflation adequately and other sources of revenue are no longer making up for the health system’s losses through MaineCare’s in-home pediatric services reimbursement, he said.
Proactive nursing care
James started getting in-home services from Andwell at 5 months old, Elie said. He receives physical therapy, occupational therapy and skilled nursing services, with providers coming to their Minot home several times a week to help James with things like eating, crawling and checking his overall health.
The surgeries create delays in milestones, such as rolling over, she said, but having a provider come into her home to work with her son where he is most comfortable has produced a better outcome, she thinks, than if he had to get services in a doctor’s office. It also allows the whole family to participate in his appointments and learn how to help him.
“They’re (providers) seeing him in an environment that he’s already comfortable in, so he’s not trying to get spatial awareness and comfort in an office; he’s already comfortable so you can just kind of hit the ground running with all the skills that you’re trying to get,” Elie said.

“Parents want to give their kids the world,” says Kristin Elie, the mother of 15-month-old son James. “Andwell helps with that.” Daryn Slover/Sun Journal
Elie learned early on that it can be lonely as a parent of a special needs child, or any child who needs extra care for that matter, and she said she feels like sometimes she is the only one advocating for her son.
However, having a nurse come into her home once a week to check on James’ wellness has paid off in ways she could not have expected, she said. The same nurse comes every week and has knowledge of his specific condition, providing another individual to help Elie advocate for her son’s health.
Elie feels that in-home services give an extra layer of care and comfort to children because they are seeing the same provider every time, which allows the provider to get to know them on a more personal level and better track milestones and identify potential issues as they arise, she said.
Last summer, James’ in-home nurse started noticing something was going on with him during her weekly visits. He had an ongoing infection but without any fever or other typical symptoms, Elie said. They both knew something was not right but did not know what it was at the time. His nurse made calls to his pediatrician and helped Kristin advocate for her son.
Eventually they found that he had a urinary tract infection and his sodium levels were dangerously low when they were able to get him to the hospital, she said. Having someone check in with James through proactive nursing care has helped to keep him healthy and get things treated faster.
“She (the nurse) was very adamant and being like, OK, something’s not adding up, he’s losing weight, he was losing weight all summer, he’s not looking well,” Elie said. “And so she would come to the house once a week, she would make the reports, she would call his pediatrician.”
In a traditional doctor’s office, patients often do not see the same provider every time and the atmosphere tends to be busier, requiring more advocacy from parents about concerns, she said. Young children can be less comfortable in those settings.
Pretty amazing
Alyssa Breau’s 3-year-old son is transitioning from in-home occupational therapy, speech therapy and physical therapy appointments to having those services being provided at Andwell’s preschool program, which he started in January, she said.
For most of his life he has had those services provided at their Lewiston home, where he has made substantial progress in eating, sitting up, walking with assistance and other milestones, she said. Breau does not think he would have been as successful without the in-home services.
“To be able to see him progress so much each week it kind of helps ease the worries,” she said.

Alyssa Breau plays with her 3-year-old son, Darrius Dockery, on Jan. 24 at their home in Lewiston. Daryn Slover/Sun Journal
Her son, Darrius Dockery, was born eight weeks early and she was sick with COVID-19 for a period of time during her pregnancy, making her experience worse as she developed preeclampsia along with another condition requiring her to give birth early, she said.
After a little over three weeks in the NICU, he came home, Breau said. They noticed early on that he was “floppy” and seemed to have low muscle tone, she said. After being assessed, he started seeing a nurse in-home at about six weeks old through Andwell.
Still awaiting genetic testing, a definitive diagnosis as to what is causing her son’s challenges has been elusive, she said. Though he has been diagnosed with autism, doctors are still working to figure out what exactly is causing some of his symptoms.
There were some scary moments after he was born when he stopped breathing a couple of times, which could have contributed to some of his struggles, she said.
Breau has noticed steady progress on his milestones since he has had the in-home services, she said.
Darrius experiences a sensory processing overload, so he struggled when he went to appointments in a doctor’s office, she said. Bright lights, multiple people around and touches often made him feel uncomfortable resulting in crying, musical tension and restlessness, particularly when he was younger.
Once he learned how to sit up at just under a year old, those behaviors got better, she said. But it was a milestone he was able to reach working with his in-home pediatric providers. Now, almost walking independently, his behavior has calmed down because he is more independent.
“It took a lot of the ladies (providers) being very persistent and plopping him down and, like, helping him to kind of straighten up his posture and getting the neck muscles and the back muscles to kind of all work in unison,” Breau said. “He fought us every step of the way but now he is pretty Zen because he can do more; it’s pretty amazing.”
Advocating for a value-based model
Parents of the children who lost Andwell services were frustrated at the organization’s decision, a decision Albert said was extremely difficult. Andwell is still working with families impacted by the reduction to find adequate alternatives.
In-home services help parents maintain jobs and families balance their time better, Albert said.

Alyssa Breau plays with her 3-year-old son, Darrius Dockery, on Jan. 24 as he sings “Wheels on the Bus” in his favorite mirror at their home in Lewiston. Daryn Slover/Sun Journal
Because of her son’s condition, Elie has to take James to Maine Medical Center in Portland to access pediatric doctors with a higher level of skill, she said. It is difficult to find a provider more local who can provide that specific level of complex pediatric care.
With four other children to care for and homeschool also, she does not know if she would be able to maintain the current home life for the entire family without the in-home services, she said.
Surely appointments would be missed sometimes and she would probably have to sacrifice time with her other children to fulfill the weekly provider appointments James needs, she said. It could also impact her ability to homeschool them.
For Breau, she quit her job before Darrius was born and then she could not go back after because she had to care for his needs, she said. She worked as a behavioral health professional at one of the local elementary schools and hopes to return to that work someday.
Families of children with high medical needs tend to experience struggles that other families do not, Albert said. For families of chronically ill children, 52% of families have to take part-time work, 42% take leaves of absences, 23% have lost a job benefit and 21% of them gave up working or retired early to care for their children, according to data shared by Albert.
For some families who have children with acute conditions, not having in-home pediatric services means that there could be lapses in care because some children cannot get care at a doctor’s office, such as children on ventilators or kids with sensitive health conditions who are particularly susceptible to illnesses passed among large groups of people.
It increases the child’s risk for being hospitalized and increases hospital admission rates, Albert said. It can end up costing the state more in the end to hospitalize a child than provide preventative care in home.
Albert thinks that the state should implement the same model for funding care for medically complex children that is uses for the palliative care model, he said. MaineCare uses a value-based reimbursement in that model.
If implemented for medically complex children, the state would give health care organizations a set amount of funding per child, he said. The organization would then be able to use those funds to give the child necessary services.
“With those monies you need to case-manage that child’s needs,” he said. “You need to bring in social work when you need it. You need to bring in nursing when you need it. … It’s called a capitated rate, where I’m given a lump sum payment per month to manage the health care for that child.”
Albert calls it a “brilliant” model that the state, with guidance from experts, developed through looking at how other states fund palliative care, he said.
Though the funding model was developed for palliative care — for people with serious illnesses — if implemented for medically complex children, it could prevent them from getting to the point where they would need palliative care.
Under the model, the state can require health care organizations to strive for certain clinical outcomes, he said.
“That’s why it’s called value-based reimbursement, instead of do more get paid more; under a fee-for-service model, you do more, you get paid more,” he said. “The value-based reimbursement says, ‘hey, we don’t want you to do more for the sake of doing more, we want to pay for value, we want to pay for outcomes, we want to pay for achievements.’”
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