Cassandra Manson reads a book Wednesday with her 2-year-old daughter, Willa, at their home in Bowdoin. Manson received a letter from Andwell Health Partners telling her that the organization will no longer provide in-home services to Willa. Willa has Down syndrome and in-home services provided by Andwell has helped Willa develop skills that allow her to interact and play with children at day care. Manson’s children Luca and Welles sit behind Manson. She and her husband, Chris, have four children. Daryn Slover/Sun Journal

LEWISTON — Andwell Health Partners is discontinuing skilled pediatric home health services to some of its patients as part of its plan to rectify financial deficits — a difficult decision necessary to help get the organization’s financial issues straightened out, according to CEO Ken Albert.

“This is this is creating capacity for us to continue to be able to sustain services,” he said.

With a funding deficit of millions of dollars going back the last few years, Andwell cannot continue to provide in-home nursing and therapy services to 96 of its 163 patients currently in the program, Albert said. It will continue to provide those services to patients in the Lewiston and Auburn area and in areas along Route 202 going toward Augusta.

Andwell had an $8.4 million deficit in 2022, a $4.9 million deficit in 2023 and it looks like it will end this year with a $2.2 million deficit, according to Albert. The organization has been able to reduce its losses in the last few years, but without reducing the in-home services it could end 2025 with a larger deficit than the current year’s deficit.

“When those deficits increase, it begins to compromise the sustainability and viability of the organization as a whole,” he said. “And that’s what’s occurring here. And so we just can’t — It would be inappropriate to allow these deficits to erode our capacity to serve the community at large.”

The organization has found itself in a tough spot as Medicare reimbursement rates are not covering the funding deficit from the MaineCare reimbursement rate anymore in a changing health care landscape, he said. Unfortunately, services to 96 patients had to end to get the entire organization, which serves about 700 pediatric patients in all of its programs, back on solid financial ground.

Cassandra and Chris Manson of Bowdoin, with their daughter, Willa. The Mansons received a letter from the Andwell Health Partners telling them that the organization will no longer provide in-home services to 2-year-old Willa. Willa has Down syndrome and in-home services provided by Andwell has helped Willa develop skills that allow her to interact and play with children at day care. Daryn Slover/Sun Journal

It is a tough tradeoff for parents of those pediatric patients like Cassandra Manson, whose daughter receives in-home services from Andwell, she said. She received a letter from the organization telling her that the organization will no longer provide services to her daughter starting Jan. 7, 2025.

“For us, that’s three-plus essential hours per week of my daughter’s life that we’re losing with really short notice,” she said. “So with 4 weeks’ notice … that’s not enough.”

Manson has a lot of unanswered questions about the organization’s decision and does not understand why it is ending services for her daughter, who has MaineCare and private insurance coverage, but not others — to her it feels discriminatory, she said.

Her 2-year-old daughter, Willa, who has Down syndrome and severe hypotonia, has difficulty walking, talking and swallowing, along with other physical issues caused by conditions she was born with, Manson said.

An in-home nurse helps monitor Willa’s feeding tube and other vital signs. An in-home physical therapist, an occupational therapist and a speech therapist all have helped her reach milestones such as crawling, walking and talking, she said.

Those services have allowed her daughter to keep up with other kids at day care using her gait trainer to help her walk and skills she learned from the therapists — allowing her to participate in activities with the other kids, Manson said.

Cassandra Manson plays Wednesday with her 2-year-old daughter, Willa, at their home in Bowdoin. Manson received a letter from Andwell Health Partners telling her that the organization will no longer provide in-home services to Willa. Willa has Down syndrome and in-home services provided by Andwell has helped Willa develop skills that allow her to interact and play with children at day care. Daryn Slover/Sun Journal

Not having those in-home services could put Manson and her husband in a situation where one or both need to cut back on hours at work so they can bring their daughter to multiple weekly appointments — along with meeting the needs of their three older children, she said. Right now she is able to have services in her home and then drive her daughter to day care just up the road after.

Albert acknowledges the tough positions parents of children with high medical needs are in and the need to be vocal about their children’s care, he said. Working parents of children needing complex medical care face more struggles — often experiencing higher rates of work disruptions and employment instability.

“We’re understanding and gathering information about the impacts that we are having on families, whether it’s direct clinical outcomes, the ability to work, the ability to care for other children in the home — I mean what we do in the home has a ripple effect,” he said. “So when we’re not there, it’s not just that child who’s receiving services who’s now impacted, it’s that family unit.”

Albert plans to meet with the Maine Department of Health and Human Services commissioner this week, along with officials from MaineCare, to discuss possible funding solutions for pediatric services, he said.

Willa Manson, 2, walks toward her mother, Cassandra Manson, Wednesday at her family’s home in Bowdoin. Willa has Down syndrome and hypotonia, which causes low muscle tone. Cassandra Manson said that Willa’s weakened muscles caused a delay in her daughter’s ability to walk. In-home services provided by Andwell Health Partners helped Willa learn how to walk, said Cassandra Manson. Daryn Slover/Sun Journal

Considering services outside the home, Manson still expects that she will face difficulties getting Willa enrolled into services at other organizations, as there are typically monthslong waitlists for some of the services her daughter needs, she said.

It took a while to get her daughter into speech therapy services, only enrolling in that service about six months ago, she said. She has received occupational therapy and physical therapy services since she came home from the hospital.

A lapse in services could have negative impacts on her daughter, though Manson has vowed not to let her daughter feel the impacts of the situation, she said.

“The negativity will fall on my shoulders, as it always does,” she said. “It lands on me, and it will stay with me, and that’s my dedication as a mother, and that’s as far as it goes. … I will not let it negatively impact her but it certainly is taking a toll on me personally. And I’m scrambling — I’m scrambling to make sure it does not negatively impact her.”

Andwell will not discharge children from services without working to help families safely transfer a child’s care, Albert said. Of the 96 kids impacted by the service cuts, about 50% of them have already transitioned into one of Andwell’s other programs or into programs at other organizations in the community, Albert said.

He vows not to leave children without access to any services, he said. “If we cannot effectuate a safe discharge or a safe transfer of care, either in collaboration with pediatrician or other services, we’re not going to just walk away from these families,” he said.