LINCOLN — Derek Caster, a 30-year-old Nebraskan with Duchenne muscular dystrophy, worries that proposed changes to how the State of Nebraska administers a Medicaid waiver for the aging and those with disabilities could be the difference between life and death.

At issue is a 238-page proposal from the Nebraska Department of Health and Human Services seeking to cap the number of hours for which live-in, often-family caregivers can be reimbursed under Medicaid for providing in-home care such as to Caster or others. The proposal would also place an annual cost limit on reimbursable care based on a DHHS estimate of nursing home costs statewide.

Caster, other waiver recipients, caregivers and advocates for the elderly and people with disabilities have been among many rallying at the Nebraska State Capitol and urging lawmakers to support them. “If we get a drop in our quality of care, I know for a fact I would be dead,” Caster said at a Capitol rally last week.

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