Nancy Cronin is executive director of the Maine Developmental Disabilities Council. Carrie Woodcock is executive director of the Maine Parent Federation.

On Nov. 26, just before Thanksgiving, the Maine Department of Health and Human Services quietly posted a rule affecting children’s behavioral health services under MaineCare. Written comments were due on Christmas Day. Three days later, another rule affecting these same children was posted, with comments due Jan. 1.

Timing is only part of the concern.

On Jan. 30, MaineCare issued a series of sweeping emergency rules — described as
“routine technical” — affecting nearly all children’s services that serve children with
behavioral health conditions or developmental disabilities. In reality, these changes
significantly narrow who qualifies for care, affecting services that thousands of Maine
children rely on to remain stable at home, in school and in their communities.

This shift is neither routine nor technical — it is a major substantive change. These are not administrative adjustments. They determine whether children with autism, developmental disabilities and behavioral health conditions can access services that allow them to succeed in school, remain at home and avoid more restrictive — and far more expensive — care.

Previously, eligibility could reflect the broader clinical picture, including documented needs and clinical judgment of clear medical necessity. The revised structure removes much of that flexibility and places heavy emphasis on moderate to severe risk behaviors.

The practical result is troubling.

Children stabilized through appropriate services may no longer qualify precisely because those services have worked. A child whose supports have reduced crises may now appear “too well” to receive continued care. Or the child with autism who needs treatment to develop functionally, but is currently not exhibiting dangerous behaviors.

In effect, the system shifts from prevention to reaction. Instead of supporting children before problems escalate, services risk becoming available only after functioning deteriorates. These changes also raise concerns about consistency with the goals of the DOJ Settlement Agreement. They also raise serious questions under federal Medicaid law, which requires states to cover medically necessary services needed to correct or ameliorate children’s conditions.

Federal guidance is clear: while not every child requires case management, every child must have access when it is medically necessary. Restricting eligibility through rigid thresholds risks excluding children whose needs are real, but not yet in crisis.

Equally concerning is the process.

Providers have been waiting since December for answers to operational and compliance questions. Families, providers and advocates submitted comments seeking clarification about eligibility, service access and implementation timelines. To date, few responses have been provided.

Because the rules were issued as emergency changes without an implementation runway, providers are expected to comply without guidance. A newly required “single assessment,” conducted by a third-party provider, must be completed before children can access services — and has already created a growing backlog.

Providers now face an impossible choice: continue serving children and risk nonpayment, or halt services and leave families without support. Many fear audits and repayment demands if services are later deemed ineligible.

The consequences are already visible. Children whose needs were previously managed may now be denied services until their conditions worsen enough to meet new thresholds. Families are left with uncertainty, fear and anger as critical supports disappear. When community services vanish, the consequences will surface elsewhere — often in emergency departments.

And through it all, the department remains largely silent. Is this a MaineCare issue, or a broader department problem? Are the Children’s Cabinet and the governor aware?

These changes affect thousands of Maine children. When policies with consequences this significant are introduced, the public deserves transparency and a meaningful opportunity for input. Parents deserve to know whether their child’s services may disappear. Providers deserve clear guidance. Lawmakers deserve a full understanding of how administrative rulemaking is reshaping care for children with developmental disabilities and behavioral health needs.

Public programs work best when changes are made in the open, with input from those
who rely on them. Silence is not policy — it is a choice. And the stakes are too high for Maine’s children.