It’s been 20 years since the closure of the Pineland Center, marking a policy shift that allowed Mainers with intellectual and developmental disabilities to leave the public institution and live in homelike settings where they could be part of their communities.

But a proposed state rule could deprive these vulnerable residents of critical support services, affecting their health and safety and jeopardizing the progress they’ve made. The Legislature should take this opportunity to put the rule on hold until it can be modified to ensure that it serves the best interest of those most affected.

Proposed changes in how the DHHS allocates services for people with intellectual and developmental disabilities could deprive most of them of the support they need to take care of themselves and function in the community. Gajus/Shutterstock.com

At issue is a Maine Department of Health and Human Services proposal to change how it allocates services for people with disabilities. The individualized team model mandated under state law, involving family members and caregiving professionals, would be replaced by the Supports Intensity Scale: a single, high-stakes, standardized test that would assign each individual a score to indicate how much support they need.

According to the DHHS, the new model would create a more efficient system. But many families and caretakers of disabled adults disagree. And the concerns they’ve raised have led the Legislature’s Health and Human Services Committee to initiate a review of the rule, starting with a public hearing Monday in Augusta.

Advocates for the disabled have good reason to be concerned. They estimate that under the new approach, over 80 percent of the Mainers receiving services will see their assistance cut by an average of nearly 30 percent.

This means that people who need 24-hour care – people who can’t speak, feed themselves, keep themselves clean; adults who need someone to watch them so they don’t run into traffic – will lose 50 hours of support a week.

Though it can take decades, family members have seen their children make great strides if they get enough assistance. A nonverbal man with autism, for example, lives in a group home and delivers Meals on Wheels, his mother, Kim Humphrey of Auburn, told the Maine Public Broadcasting Network last month. But without adequate support, Humphrey says, her son can deteriorate rapidly, losing the ability to communicate and to use the toilet.

The class-action suit that eventually led to the closure of Pineland also raised awareness of our society’s obligations to people with disabilities. To ensure that these Mainers keep getting the care they’re entitled to, lawmakers should step in and revise the proposed rule so that the DHHS is required to use their new assessment tool as it’s meant to be used – as a supplement to instead of a replacement for an approach that takes into account each person’s needs.

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