Maine's Parent Caregiver Law: A Well-Meaning Idea Stuck in Bureaucracy

Maine's attempt to support parents caring for severely disabled children is hitting roadblocks. The law, passed in 2023, was supposed to allow parents to get paid for their caregiving roles. But two years later, it's not working as planned. The main issue? The law ties the program to home health agencies with Medicare licenses. These agencies usually focus on older adults or adults with disabilities, not children. This makes it tough for parents to sign up and get paid. Andrea Dole, a parent advocate, spent years pushing for this program. Her son has complex needs, and she hoped the law would ease her family's financial strain. But when she tried to enroll, she hit a wall. "The program is on the books, but we can't use it, " she said. Her family lives on a tight budget, and the lack of support adds to their daily stress. Experts say the law is flawed. It's designed for short-term care, but many families need long-term support. Nancy Cronin, a Medicaid policy expert, argues that other states manage to pay parents for long-term care. She believes Maine could do the same if the program were reworked. The state says it's working on fixes, but progress is slow. Meanwhile, families like Dole's are stuck. They can't get paid for their caregiving work, and finding outside help is hard due to workforce shortages. State Senator Joe Baldacci blames the Maine Department of Health and Human Services for the delays. He says the bureaucracy is slow to respond and not doing enough to help families. "It's heartbreaking, " he said. "The state can do better. " For now, parents are left waiting and advocating. They hope the program will eventually work, but the roadblocks are frustrating. "We do all kinds of work every day that's unpaid and unrecognized, " Dole said. "If we could be paid for some of this work, it would reduce a lot of strain on our families. "