06/02/2026
Lifespan Waiver Holds Promise — BUT WE’RE BEING ASKED TO LEAP WITHOUT A NET
I am sharing this important Op-Ed by Kim Humphrey, President and Founder of Community Connect Maine. https://communityconnectme.org/
Kim is also the mother of Dan, who has severe autism, and she has spent decades advocating for meaningful, appropriate supports for people with disabilities and their families.
Ten years ago, Kim brought together a group of parent advocates to create a nonprofit organization built around a simple but powerful vision: ensuring that children and adults with disabilities have the supports they need, when they need them, to live full and meaningful lives in the communities of their choice.
For years, many of us had been navigating Maine’s disability services system in isolation, fighting for our sons and daughters one family at a time. Finding one another and working together was a long-awaited opportunity to transform our individual struggles into a collective voice. Together, we developed a mission that remains as relevant today as it was then:
To connect individuals, families, caregivers, and communities to improve the system of care for people with developmental disabilities and related conditions.
The work has not been easy.
Over the past decade, we have:
• Partnered with families across Maine and worked alongside legislators to educate and inform policymakers.
• Written countless testimonies and appeared before legislative committees to advocate for people with disabilities and the caregivers who support them.
• Attended presentations, public forums, webinars, and informational meetings.
• Volunteered our time to serve on stakeholder groups convened by the Office of Aging and Disability Services (OADS).
Five years ago, OADS introduced the concept of a Lifespan Waiver, the first major redesign of Maine’s developmental disability service system in decades. The waiver is scheduled to be implemented on October 1, 2026.
The Lifespan Waiver has the potential to improve services and expand opportunities for many people. However, as implementation approaches, significant questions and concerns remain unanswered.
Kim Humphrey’s Op-Ed thoughtfully and factually outlines the concerns being raised by families, self-advocates, caregivers, and provider agencies across Maine. These are not voices resisting change; they are voices asking for clarity, transparency, and assurance that vulnerable individuals will not lose critical supports during this transition.
I encourage you to read Kim’s article and share it widely. The people most affected by these changes deserve to be heard before we take a leap that could impact thousands of Maine families.
Independence Association
Community Connect Maine
Lifespan Waiver Holds Promise — BUT WE’RE BEING ASKED TO LEAP WITHOUT A NET by Kim Humphrey
Is this the right moment to launch a highly complex transformation of Maine’s system of care for those with intellectual and developmental disabilities? I’m worried.
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.
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.
Is this the right moment to launch a highly complex transformation of Maine's system of care for those with intellectual and developmental disabilities? I'm worried.
