LINCOLN - Parents and advocates of people with developmental disabilities are pushing for Nebraska’s Department of Health and Human Services to stop proposed limits on a waiver program. Meanwhile, the state said it’s taking the outpouring of comments under review and will respond to each of them. The waiver program in question is called the Aged and Adult and Children with Disabilities Waiver, commonly called the Aged and Disabled Waiver.

According to a DHHS webpage, family caregivers for people with a high-level of need, also called skilled nursing facility level of care, couldn’t receive more than about $162,000 per year for waiver services under the proposal. Also, a department review would take place if service costs surpass roughly $139,000 annually.

Many people have submitted public comments about a proposed cap for the Aged and Disabled waiver on the number of billable hours per week for “live-in caregivers” to 40 hours and an additional 30-hour cap per week for other caregivers, DHHS said. That language can be found at the bottom of page 53 in the full proposal written by the department.

Susan Samuelson is a parent of a child with Duchenne muscular dystrophy and a member of a new advocacy organization called Nebraska Rare. Limits on family caregiving would push more people to seek agency care, which is understaffed, Samuelson said at a press conference Wednesday. “Agencies cost two to three times more than what families are paid,” Samuelson said. “And I want to just say, families are only — nobody’s making bank. It’s $15 an hour, minimum wage.”

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