New developmental disability waiver is falling short of people's needs, advocate says

An advocate for people with developmental disabilities thinks a new state waiver program is falling short.

In March 2024, Gov. Jim Pillen announced plans to eliminate an eight-year waitlist for developmental disability waiver programs. Since then, the list has been whittled down from more than 2,700 people to 940.

Most families on the waiting list were seeking what’s called a comprehensive waiver, which lets them choose what services they need and has no overall annual spending cap. But under the new system, only 3% of those families have been offered that waiver.

Instead, most people are offered a family support waiver, which has a $10,000 annual cap. Only about 46% of Nebraskans have chosen to use that waiver, while 32% have declined it. The rest of the offers are pending.

In total, all developmental disability waiver offers have been accepted by 44% of people with 24% declining since last March.

Tony Green, director of the Division of Developmental Disabilities at the Nebraska Department of Health and Human Services, said people declining offers are getting their needs met in a different program.

“So it didn't make sense for them to move to the family support waiver,” Green said.

He said not everyone who’s accepted a waiver offer has used the money yet.

“There's a much smaller number of people who have gone all the way through the system and are actually receiving services right now,” Green said. “But again, a lot of that wouldn't be necessarily driven, sometimes even by agency. It's just the family said ‘I accept my services but I don't want any support until summer, when school is out.’”

The department did not provide specific numbers on the amount of people using the waiver for day programs, residential services and other services under the new system.

One disability rights advocate said he sees the change to the family support waiver as a cut in eligibility.

The family support program was intended to be supplemental, said Edison McDonald, executive director for the disability rights organization Arc of Nebraska.

“Now it seems instead they're trying to use it to push people down and say ‘You don't need the comprehensive waiver,’” McDonald said.

People are turning down the new waiver because reimbursement rates are too low, McDonald said. The waiver pays service providers about $13 per hour.

“We would probably need something more in the range of an $18-an-hour sort of pathway,” McDonald said.

Service providers need that amount to make a residential program financially viable. Residential services are high in demand but hard to secure under the new system, he said.

“It's the long-term supports and services… services like residential, those are the services that families want,” McDonald said, “But when they go out to look for them, they're basically not there. Or, even if they can find an agency that will take them on, the agency struggles to staff it, because those reimbursement rates are so low.”

Current regulations for developmental disability programs are designed specifically with adults in mind. The state’s guidelines are outdated and create a barrier to a successful youth program in the summer, McDonald said.

According to DHHS, many people on the family support waiver are looking for at-home care rather than residential services.

“I would say it's an evolving waiver and program. We just launched it 12 months ago. So it's new to the provider world,” Green said. “Our system has predominantly been an adult-oriented system, and so serving children is new for many providers.”

Green said he has not heard of people saying they need more services when declining the family support benefit.

“I would also offer that if there's anybody who is needing access to services and saying they can't receive them, they certainly should reach out to the department so we can problem-solve that,” Green said.

At that point, it’s the service coordinator and department’s responsibility to make sure that needs are being met, Green said.

“The advocacy groups and what the department has committed to doing is watching and monitoring the expenditures of those who accept the family support waiver to see if that $10,000 cap is adequate or not,” Green said.

DHHS is working on simplifying the developmental disabilities system, Green said. For example, he said all programs now flow through one application online, instead of the several options previously.

One positive development is the expansion of Medicaid programs for all kids with developmental disabilities, regardless of parent income level, McDonald said. Medicaid helps cover the cost of medical appointments and prescribed accessibility devices.

However, he said he’s concerned that people with developmental disabilities could receive fewer benefits under the new system. At the outset of the initiative to eliminate the waiting list, McDonald said people were promised they wouldn’t lose services.

He doesn’t think benefits will get completely cut. But DHHS could routinely use a new needs assessment to decrease dollars for a family.

“For a lot of people, those services ensure that they're better,” McDonald said, “and the assessment then may say ‘maybe you don't need as many services,’ so they will end up receiving cuts. And now (Green) is saying we'll have to have that conversation when we come to it.”

In the Legislature, McDonald said Arc of Nebraska wants to pass LB268, which would tie “provider rates to 150% of the minimum wage. That's the best practice,” McDonald said.

The minimum wage increases to $15 per hour next year.

“It would bump it up to about $22.50. After that, then it would be tied to inflation so it would consistently keep up.”

Another bill, LB565 would relieve some regulatory burdens for developmental disability providers.