Child advocates say messaging from Maine officials around proposed rule changes to a Medicaid program that serves children with disabilities has sown confusion among nonprofits delivering the benefits.

Advocates said the changes would restrict eligibility, making it harder for some children to obtain services that help with life and social skills.

“It’s a complete mess right now, and if these rules go forward it’s going to break the system,” said Nancy Cronin, executive director of the Maine Developmental Disabilities Council.

The Maine Department of Health and Human Services has proposed rule changes to Medicaid’s Section 28, which offers services to help children with skills, such as how to order food at a restaurant, answer the phone, listen and interact with others. Cronin said the changes would result in children with certain diagnoses, such as attention deficit/hyperactivity disorder and cerebral palsy, becoming ineligible for services.

Laura Cordes, executive director of the Maine Association for Community Service Providers, a group that advocates for nonprofits, said changes to the rules for Section 28 and similar services were implemented on an emergency basis on Jan. 30, with a final decision from DHHS expected by late April.

Cordes said she has heard of longer waitlists and delayed services at some agencies. An agency in Sanford said in a letter addressed to parents last month that it was ending Section 28 services in May, citing “state-level changes” as one of the reasons.

Lindsay Hammes, a spokesperson for DHHS, said in an email Thursday that the rules are not yet finalized, and will take into account the feedback the agency has received.

“The department cannot speak to the business decisions taken by providers impacted by the currently-in-place emergency rules,” Hammes wrote. She said input from the nonprofits “could lead to changes in what is currently in effect via the emergency rules.”

Erica Boudette, children’s program coordinator for Choices Are For Everyone, Inc., a Westbrook nonprofit that provides Section 28 services, said no services have been cut at the agency, but they are “in a holding pattern” while waiting for the state to decide.

“All these children could be losing services at the end of April,” said Boudette, who estimates six of the 15 children at their agency receiving those services would likely lose them if the proposed rules are adopted. “We don’t know what is going to happen, and that is very stressful.”

The rule changes, according to a public notice from the department, are intended to comply with a November 2024 settlement agreement between the state and the U.S. Department of Justice, which filed a lawsuit against the state in September of that year. The agreement’s goal was to increase access to Medicaid services for children.

Hammes said in an email last month the intent is to “update outdated references and clarify vague language” in the Medicaid programs.

About 3,500 Maine children use Section 28 services, according to DHHS officials. It’s unclear how many children would lose services if the proposed rules are adopted, advocates said.

While Section 28 is one of the programs in question, Cordes said similar services are also at risk under other Medicaid sections, including one that involves case management for children with disabilities. Cordes said DHHS received numerous comments from advocates urging the department to not make changes they say would result in reduced eligibility for services.

“For the provider community it’s not clear how these changes fit together, or what the final result will look like,” Cordes said. “What we are seeing is increasing strain on a system that is already having to navigate workforce shortages.”

Waypoint in Sanford, a nonprofit that provides behavioral health services for children, said in a March 12 letter to parents that its Section 28 services would be ending in May, in part because of the changes at DHHS.

“This decision was made following a comprehensive review of operational and programmatic factors, as well as recent state-level changes to the program, which our current structure doesn’t support,” according to the letter, which Cronin provided to the Portland Press Herald.

Waypoint officials declined to comment.

Adam Bloom-Paicopolos, executive director of the Alliance for Addiction and Mental Health Services, Maine, said nonprofits risk not getting reimbursed for services if they don’t follow the rules, even ones implemented temporarily as an emergency.

The uncertainty means nonprofits may delay or curtail services, he said.

“With so many impacted services, and such little guidance from the department on implementation and compliance, many providers have been forced to assess which programs they can reasonably continue to operate,” Bloom-Paicopolos said.