Maine’s Home Healthcare Shortage

The growing lack of home health care professionals is having a significant impact on one of Maine’s most vulnerable groups.

This gap is forcing scores of families with children with disabilities to offer 24-hour care for their children. However, Maine lawmakers are proposing a bill this session that would pay parents to care for their children.

Andrea Dole’s son James was born at home. Hours later he was rushed to Northern Light Mercy Hospital in Portland. Doctors would later diagnose him with microcephaly.

Microcephaly is a rare neurological condition in which an infant’s head is much smaller than other children of the same age and gender’s heads. Microcephaly, which is sometimes discovered at birth, is caused by a problem with brain growth in the pregnancy or when the brain stops expanding after birth.

James is now seven years old. He has Cerebral Palsy, cannot speak and is fed through a g-tube. He also has a seizure disorder.

James is eligible for 120 hours of in-home nursing care per week under MaineCare, the state’s version of Medicaid. But filling those hours has been impossible. More than a dozen home health nurses have left for higher-paying positions. During the school day, James has one nurse, Richard, by his side. Andrea’s husband Patrick works long hours as a boatbuilder, so she is solely responsible for James.

Andrea recently testified in support of LD 874 alongside other parents of children with medical and developmental disabilities. Parents who can demonstrate that they actively sought home nursing staff could be paid for caring for their children under the idea. In addition, parents would be required to become trained caretakers.

Sen. Joe Baldacci, D-Bangor, is one of the bill’s sponsors. He informed members of the legislature’s Health and Human Services committee that the bill is necessary to solve staffing shortages, among other issues.

“These are invisible children who don’t have a waitlist,” said Nancy Cronin, executive director of the Maine Developmental Disabilities Council.

Cronin noted that, unlike children with behavioral health care needs, there is currently no centralized referral system within Maine’s Department of Health and Human Services where case managers can work with families of medically fragile children, which could number in the hundreds across the state, to find professional medical help.

Private-duty nurses, are often paid significantly less than nurses in hospitals, where nurses with similar skills earn close to a six-figure salary, plus health benefits, vacation time, and sick days. Private-duty nurses often do not receive benefits because they are independent contractors. Those who pursue the specialty, on the other hand, frequently do so because they like working with individual patients and prefer the freedom to choose their assignments.

Disabled people deserve to live in their communities regardless of age or disability More must be done to ensure that all disabled people receive the services and support they need regardless of age.


Florio, John, and Ouisie Shapiro. “Should Nurses Take a 30% Pay Cut When Their Patient Turns 23?” The New York Times, The New York Times Company, 30 Apr. 2021,

Leigh, Vivian. “Bill Would Pay Maine Parents Already Caring for Medically Fragile Children.” NEWS CENTER Maine , 11 Apr. 2023,

“Microcephaly.” Mayo Clinic, 26 May 2022,

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