Developmental disability advocates fear proposed changes

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.”

The Aged and Disabled waiver is a “lifeline” for families, Samuelson said. Nebraska Rare aims to advocate for families impacted by rare diseases, according to its website. Because care is a round-the-clock duty for people with the highest level of need, the most vulnerable families will be affected by the changes, she said.

“Forcing families to carry the burden of professional level care without fair pay, while limiting access to essential services, will not strengthen our system. It will break our system,” Samuelson said. “It will break families.”

Many people, including a man with muscular dystrophy who spoke at the press conference, worry the proposal would push those with developmental disabilities to become “institutionalized” and move disability rights backward.

The new proposal is part of a routine, five-year examination of the Aged and Disabled Waiver, said Tony Green, director of the Division of Developmental Disabilities at DHHS. The department is taking people’s concerns under advisement.

“We have received a significant number of comments that have indicated if we operationalize it as written, it would cost the state additional money,” Green said, “and we are absolutely evaluating that and appreciate that feedback at this point. But I'm not at a place yet, to say it's changing, but certainly that is an area we're looking at.”

It’s hard to say how much cost the state would incur if the proposal stands, Green said, because rates are negotiable for providers. The Aged and Disabled waiver has grown in cost by more than 300% since 2016, Green said, adding “that required the department to propose some changes in order to make this program stable and sustainable into the future.”

He said DHHS doesn’t want to return to a waiting list, which made some people wait more than seven years for funding and services. Still, data from last summer showed not many people were accepting waiver offers from the state.

Additionally, the state has answered questions from the so-called Olmstead Committee, a DHHS spokesperson said. The Olmstead Committee is a group of advocates aiming to keep Nebraska in line with a Supreme Court ruling that ruled inclusion is a right for people with disabilities.

Public comment on the changes ended Jan. 5. Now, the department is tasked with creating a public comment summary and a response to each point. That document will be posted on the DHHS site and included in the final application that gets sent to the Centers for Medicare and Medicaid Services, or CMS.

If changes to the department’s updated proposal are “substantial, we would be required to initiate an additional 30-day public comment period prior to submitting that to CMS,” Green said.