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There’s a saying in the disability community, “nihil de nobis, sine nobis.” Nothing about us, without us.

I find myself staring in the face of one of the biggest “without us” episodes I have experienced in North Carolina.

During this time of COVID pandemic, of isolation, of Medicaid transformation, of some level of civil unrest and political disagreement, North Carolina is considering, once again, the disruption of healthcare to thousands in multiple ways. No one was asked.

The community, which includes those with intellectual and developmental disabilities, mental health challenges, substance use disorders, traumatic brain injury and the underinsured, among others, is reeling from the effects of the pandemic. The community is looking at the unknown with the advent of Medicaid breaking into the standard plan and tailored plans, moving thousands of individuals receiving Medicaid benefits into the care of commercial health plans this spring. At least they were consulted to some extent regarding the latter.

The newest challenge, dare I say assault, on the horizon is yet another realignment attempt by several counties within the LME/MCO system. You may wonder what the difference is, the services are “all the same.” No, they aren’t.

Relationships built over the course of years are at risk. Continuous services are not guaranteed, despite promises and sweet-sounding words. The reality is unpredictable. Care and services, which families have gained by appeals and fighting the system, are at risk.

Many families have a carefully cobbled together system of support, which may or may not continue to be viable. And not one of these families, these individuals, those whom the changes will actually affect in the most fundamental, meaningful and intimate ways, were consulted.

I strongly urge those in the positions to make these decisions for citizens of North Carolina within the Department of Health and Human Services to consider those who are not being heard. Many cannot make comment, for lots of reasons.

Most don’t believe their voice matters. Few are being heard, even at this late date.

Nihil de nobis, sine nobis.

Jean Andersen

Stanfield