Cullen Ryan is chair of the Maine Developmental Services Oversight and Advisory Board. Valerie Landry is the board’s executive director.

The Maine Department of Health and Human Services (DHHS) is seeking federal approval of a sweeping new Medicaid waiver program called Lifespan. Medicaid waivers enable individuals with intellectual and developmental disabilities (I/DD) to receive services in the community rather than in institutions. Lifespan is intended to make it easier and more seamless for individuals to obtain services beginning at age 14.

The goals are laudable. As proposed, Lifespan will not achieve them.

Lifespan will make it more difficult for individuals and families to understand, access and navigate services. It is unnecessarily complicated and increases administrative burden. Its financial underpinnings are unclear, if not questionable. And it layers an extensive new initiative atop a fragile foundation.

This is why we — the Maine Developmental Services Oversight and Advisory Board — have asked the department to pause submission of the Medicaid waiver applications. Instead, key parties should be involved in the design, not simply invited to comment after the fact. With that approach, a new administration and legislature would have the benefit of an initiative with greater likelihood of success and broader support.

This is not an 11th-hour critique. Concerns have been conveyed at many forums, meetings, and in writing. This includes written comments submitted to DHHS during the recent 30-day notice period. Because the department does not make these comments public, it is difficult to know the extent of concerns.

Here are a few examples.

Bad timing: It is unwise for the administration to seek approval for this major redesign just months before it departs. The incoming administration and legislature immediately will face a barrage of concerns while dealing with looming cuts to Medicaid — Lifespan’s funding source. This sets the stage for a chaotic and disruptive implementation, not to mention potential legal challenges.

Confusion: Despite efforts by department staff to explain the initiative, it is safe to say that many well-informed stakeholders do not understand it. Lifespan is unnecessarily complex, without a clear path for successful implementation or sustainability. The fact that it is modeled after programs in Tennessee and, more recently, Mississippi and Alabama may be a factor in the disconnect.

Impact on individuals and families: Many individuals will face a difficult choice to either stay in their shrinking, existing program or transition to a new, untested one. Individual funding ranges will be based in part on functional assessments conducted remotely by Maximus a multibillion-dollar, for-profit government contractor. And just as individuals and families attempt to navigate this new program, Lifespan eliminates individual choice of case manager.

System inadequacy: Service providers already are struggling. Due to inadequate reimbursement and workforce shortages, many long-standing nonprofits have curtailed services. Lifespan exacerbates the problem by imposing even more complicated requirements. The department recently terminated funding for several relatively new providers for health and safety reasons. More closures are expected. The insufficient supply of stable, long-term, experienced, licensed service providers is of extreme concern and must be addressed in any service redesign. It is not clear if, or how, Lifespan does so.

Insufficient capacity at DHHS: We recognize and appreciate the hard work of department staff. In our view, however, the department lacks capacity to undertake such a seismic change given its many complex existing and emerging challenges.

Insufficient groundwork: Lifespan expands eligibility for services beginning at age 14. This requires close coordination between DHHS and other state agencies — something not well-established now. Expectations for coordination should be assessed and developed as part of the design, not after authorization.

Unclear financial modeling: The financial model leaves many questions unanswered. How will Lifespan be funded over the long term? How will funding Lifespan affect existing services? How will Lifespan affect a service network contracting due to inadequate resources? What data supports the claim that “natural supports” will reduce funding needs? At the least, a presentation of a robust financial model for both stakeholders and lawmakers is needed — prior
to seeking federal approval.

It has been suggested that stakeholders ought not worry — that Lifespan can be modified during rulemaking. This is inaccurate. The applications contain hundreds of pages of detail. It is unrealistic that the many issues could be resolved in the time between federal approval, rulemaking and implementation. These core issues can and should be addressed before Maine seeks federal approval.

Without question, we need to make it easier for young people to transition to adult services. We need to reduce duplication, fragmentation and administrative complexity that adds cost, but not value. We need true outcome measures. We need to predict the cost of our service obligations. And we need to protect the rights of individuals with I/DD — rights codified in both federal and state law.

As now proposed, Lifespan is not the remedy for these issues. Despite the effort invested thus far, moving forward now will jeopardize rather than improve the system.

Let’s pause and get this right.