Kim Humphrey is the founder and president of Community Connect Maine, a nonprofit organization focused on improving the system of care for individuals with intellectual and developmental disabilities and related conditions.

Maine is preparing for the most sweeping redesign of its system of care for adults with intellectual and developmental disabilities in decades.

The new “Lifespan Waiver” has a strong vision, and many of its components hold great promise. But if it is not implemented properly, the state risks dismantling the current support system without a stable replacement, which could be a disaster for those who rely on that support to survive. An expert clinician once told me that eight years of learning can be lost in three months of a poorly planned transition—we can’t take that risk.

The main goal of the Lifespan Waiver is to replace the current fragmented adult waivers (Sections 29 and 21) for new entrants with one that begins at age 14 and carries people with disabilities throughout life, adapting and offering more options as their needs change.

Sounds good. But can Maine realistically deliver this ambitious plan?

Workforce shortages already strain the disability support system. An individual who loses a trusted direct care worker risks becoming increasingly agitated and withdrawn. Families live in chronic duress when workers repeatedly fail to show up. Providers sometimes consolidate homes simply to maintain enough staffing to meet basic daily needs, disrupting residents’ lives in the process. At the same time, individuals can wait years for essential supports while homes already built for care sit empty, because there are not enough workers to staff them.

What good is a redesigned program without enough people to implement it?

The timing, too, is worrisome. The proposal introduces new layers of administration at the same time Maine is restructuring reimbursement systems, changing provider licensing rules, and anticipating a revision of behavioral regulations. The children’s service system is also undergoing major change. Perhaps most concerning are the major Medicaid cuts due early in 2027 – all dropped in the lap of a newly minted state administration. 

Each of these changes is significant on its own. Is it wise to launch a highly complex, multi-layered support system in the midst of it?

We are not resisting change. Many of us have spent decades advocating for a system that is more flexible, more equitable, and more responsive across the lifespan. 

The Lifespan Waiver proposal does include promising ideas: Individuals could have more freedom to choose their own staff. Greater access to technology may help people live more independently. In some situations, an app that provides prompts and reminders could reduce the need for in-person support while increasing independence and privacy.

But these changes are causing increasing confusion and concern among individuals, families, and providers trying to understand how this new system will actually work.

It feels like the ground is shifting beneath us. Individuals who believed their existing supports would remain stable are being drawn into a complex and still-evolving system tied to assessments, reimbursement changes, and funding structures that have not yet been fully tested in practice.

For example, the state initially said that current waiver participants would be grandfathered into their existing services and would not be required to take a standardized assessment that places all Lifespan Waiver recipients into one of four tiers of support. Now they are told they must take that assessment but, more critically, not how their services will be affected by the score.

While it looks different for everyone, the consequences of disruption are enormous. It can take years for high-needs individuals to find the resources necessary to reestablish stability when their home and routine are thrown into disarray. And without appropriate resources, stability is unattainable.

Maine is trying to build something huge and hopeful on an unstable foundation. The state must first address these issues, eliminate the confusion and concern, and then proceed at a pace that safeguards the systems that people rely on to ensure everyone gets the supports they need.