Families Fear ‘Devastating’ Changes To Nebraska Program Serving People With Disabilities, Elderly | Community

The annual costs that Medicaid would reimburse under the waiver would also be limited based on changes in the yearly costs of nursing home care statewide.

“If they truly do this, it’s going to be pretty devastating to our family,” said Anna Keyzer of Lincoln, who has utilized the payments for up to 112 weekly hours to help afford to care for her 21-year-old son, Simon. “I don’t know how anyone would suddenly lose 72 hours’ worth of a paid job and be OK.”

Yearly nursing home costs were $92,438 in the last fiscal year, which ended June 30. Families would need an administrative review once costs reach 150% of the annual cost ($138,657), and families could be paid as much as 175% of the cost of that care ($161,767) if they pass a clinical review from a DHHS team.

DHHS says the changes are needed to make the program, which splits costs between the state and federal government, fiscally “sustainable.” The state faces a projected $471 million shortfall by mid-2027. Pillen is seeking to cut state spending by $500 million. DHHS is the largest state agency.

‘PULLING THEIR LIVES APART’

Keyzer adopted Simon from Bulgaria in 2013, just before his 9th birthday. He weighed 18 pounds then and now weighs 72. Keyzer became his caregiver when he turned 19, and the family struggled to find outside options, including some who would quit soon after or leave during a shift.

Simon has Renpenning syndrome, a rare genetic condition that occurs mostly in males. He is hard of hearing and blind, has auto-aggression, is tube fed and has osteoporosis because of a lack of nutrition when young.

Marie Wohlers of Crawford said her family is reimbursed for 80 weekly hours of family provided care under the AD Waiver to care for her 28-year-old daughter, Michaela. Wohlers noted that in the Nebraska Panhandle, support systems are already fairly limited, and she said families are mindful of rising costs.

“I feel like it’s pulling their lives apart, and with no support systems in place that if this happens, what happens to these individuals?” Wohlers said.

Michaela has Rett syndrome, a rare genetic neurological disorder that primarily affects females and causes progressive loss of motor skills and language. She is unable to move herself, can’t walk or talk, is tube fed, has severe gastrointestinal issues, is at-risk for pressure sores and has a seizure disorder.

Wohlers said she and her husband involve Michaela in their Panhandle cow-calf ranching operation as much as possible.

Wohlers worries the proposal puts Michaela and others at a higher risk for poor health or being taken advantage of. Wohlers said the waiver is meant to give individuals a better quality of life.

“I just feel like a lot of these things are going to make things more challenging, and it’s going to limit the quality of life for a lot of individuals,” said Wohlers, a former Crawford school board member.

Those wishing to submit public comments can email [email protected], fax 402-471-8792 or mail Division of Developmental Disabilities, 301 Centennial Mall South, P.O. Box 95026, Lincoln, NE 68509-5026. DHHS hosted four public forums in mid-December.

Proposed waiver changes include:

• Maximum reimbursable caregiver hours, 112 hours reduced to 70 hours.

1. No more than 40 hours could be paid to an in-home family caregiver.

2. An additional 30 hours could be added, but would need to be delivered by someone outside the home.

• Maximum reimbursable costs each year are based on yearly nursing home costs, which were $92,438 as calculated by DHHS.

1. Families would need to undergo an administrative review if costs reach 150% of the annual cost ($138,657).

2. Families could be paid as much as 175% of the cost of nursing home care if they pass a clinical review from a DHHS team ($161,767).

‘PRESERVE THE PROGRAM LONG TERM’

The state’s Olmstead Advisory Committee, named after a U.S. Supreme Court case, helps guarantee that people with disabilities are given their right to integrated community or home support and avoid institutionalization.

At an emergency Dec. 19 meeting of the committee, Tony Green, director of the DHHS Division of Developmental Disabilities, said the changes are needed because, for the past 10 years of the program, costs have been “far outpacing” population growth, of 34%.

More than 10,000 Nebraskans are now using the specific Medicaid waiver, according to DHHS.

DHHS spokesperson Jeff Powell and Green said the waiver’s total costs have increased 322%, from $91 million to $383.6 million (an average of $29.3 million annually). The duo said the individual cost per person has risen 218%, from $14,610 to $46,415 (an average of $3,181 each year).

Green said the Legislature has not provided a budget to support those costs, so DHHS is trying to find an alternative route through the “normal” five-year renewal point.

“It necessitates the state doing something to preserve the program long term, or we would have to implement a waiting list,” Green told the Olmstead Advisory Committee.

ONE OF MANY MEDICAID WAIVERS

Phil Gray, second vice president for the Arc of Nebraska, a statewide nonprofit that advocates for Nebraskans with intellectual disabilities, said at the Olmstead meeting that the state’s description of the proposed changes might seem “reasonable,” but the “reality” parents might face is different.

“I’m not convinced that this process is going forward in any kind of manner … that you can manage in a reasonable way without having the catastrophes we’re hearing about,” Gray said.

Gray and others note that the AD Waiver proposal follows Pillen and Green taking steps to end a services waitlist for Nebraskans with developmental disabilities. Some said they worry success for one waiver now could hurt another.

Keyzer also worries the move is “political,” so Pillen and DHHS can say they offered solutions, even if they’re not “real” or practical. She and other families noted that many family caregivers work for minimum wage ($15 an hour, effective Jan. 1), yet some agency caregivers could be paid much more per hour.

They say the changes aren’t fiscally responsible.

“These are the most intense mama and papa bears in this state who have been protecting their loved one and … fighting every step of the way to make sure that our children are alive and are OK and are living their best life,” Keyzer said. “We will continue to fight.”

Joni Thomas, an AD Waiver recipient and Olmstead advisory member, said she had polio when she was two and a half, in 1959. It was the end of the second wave of the epidemic, and though the vaccine was out and her family had received it, she was already sick. She spent nine months in the hospital, including six in an iron lung.

Thomas said her mom was given the opportunity to put her in an institution, but her mother refused, saying, “She’s my child, and if she lives through this, I’m taking her home.”

Now 68 years old, Thomas said she grew up always wanting three things out of life: to own her own place with a personal set of keys, to drive and to have a job and not what she’s facing now. Thomas retired in 2023 and founded a nonprofit to bring awareness to an “untapped” pool of talent.

“I got all of those things,” said Thomas. “But at the same time, the programs are set up to really kind of keep you impoverished.”

Thomas currently uses the AD Waiver to cover about 10 hours overnight, to help her sleep comfortably and safely, and a few hours daily so she can go to the bathroom three times a day and help prepare food, of which she said a whole-food, plant-based diet has reduced sickness and kept her out of the hospital.

If Thomas is limited to 70 hours or more, depending on a couple of proposed exceptions, it’ll affect how many hours she has per day, including to sleep.

The fear is also real for Thomas’ mother, who is 91 and has significant dementia. The family worries the waiver changes would cause one of Thomas’ mother’s “greatest fears in life” to come true, that she couldn’t stay at home and live out the rest of her life comfortably.

When Thomas first found out about the changes, her first thought was, “Oh my God, the whole thing I fought all my life for is going to happen to me.”

She said care needs to be certain and doesn’t want to rely on a volunteer to use the bathroom. She said for those questioning her opposition to living in a Medicaid facility, they should visit one and ask themselves if they would want to live there.

‘CUTTING OFF OUR NOSE’

Multiple Olmstead advisory members and families have also pushed back on Green, with many questioning whether the calculated nursing facility rate the state is using is accurate.

For instance, Kierstin Reed, president and CEO of LeadingAge Nebraska, which represents nursing homes and assisted living facilities, told Green that institutions have a variety of payment rates based on the complexity of need. She told Green she would “guarantee” most would exceed $162,000, if not well more with some daily rates of $1,000.

Reed told Green the $92,000 limit would count for “bare minimum,” “custodial-level care,” not the care needed for AD Waiver participants. She told him the waiver changes are a “choice.”

“We’re cutting off our nose to spite our face,” Reed told the Nebraska Examiner.

Nebraska also has a workforce problem, Reed said, and some facilities can’t support the needs of all patients, either. Some Nebraskans don’t have a nursing home within 100 miles, let alone bed openings in one that accepts Medicaid residents. Reed said families also know their loved ones’ needs.

“They have the intuition to know what the routine is and what things need to look like and what their loved one needs and what every sound or every movement might mean,” Reed said.

Wohlers, whose family lives north of Crawford, said there is a day center in Chadron, almost 30 miles away, which was a “clear no” for Michaela.

“Not being able to talk doesn’t mean you don’t have thoughts or things you want to say or things you want to express,” Wohlers said. “It just means it’s harder for you to do so.”

Reed also expressed concerns that many AD Waiver recipients will still need the same level of care they are receiving now, which exceeds the state’s proposed hourly limits, and that family caregivers won’t have time to work to make up for the income lost to the new caps.

Keyzer is one of many families who worry whether they could get another job to fill the gap while still providing the same level of care their loved ones need. Many said they also worry about relying on strangers for care.

Green, responding to Reed, said “there’s not a clean way” to know how many families are above the proposed 70-hour limit. He said limiting families to 40 hours is “common” in other states.

‘BUDGETS ARE BALANCED ON OUR BACKS’

Alana Schriver, executive director of the Nebraska Association of Service Providers, said many service coordinators are not aware of the changes being proposed for services that are a “lifeline” for many families. She said the timing seems intentional to seek public comment over the holidays, when families and advocates might be distracted or short on time.

Schriver said human lives are “more important than any dollar bill” and that anyone might need the AD Waiver one day. She placed blame for tight budget times on Gov. Jim Pillen for signing significant income tax breaks in 2023.

“Tax breaks for the wealthy should not come on the backs of the aging and disabled,” Schriver said.

Thomas said Nebraskans with disabilities are taxpayers, and she lives a “typical life” where she picks up her grandson five days a week and watches him at home while his parents work. But Nebraskans with disabilities are “at the bottom of the list.”

“Once again, budgets are balanced on our backs,” Thomas said. “I thought we were moving beyond that, but we’re not.”

Keyzer echoed those concerns and suggested DHHS fundraise or try to ask for additional state dollars. Green did not answer Keyzer when she asked if DHHS tried to seek additional funding, and Powell did not answer when the Examiner asked.

“Is this really the way to produce funds?” Keyzer asked. “To scare us all, right before the holidays, and tell us we have to figure out how to survive without incomes and still take care of our kid? I don’t know how to do that.”

While the changes are still in the proposal stage, some families said they’ve been told their hours will be cut Jan. 1. Green sidestepped a mother when she asked him at the Olmstead meeting. Powell said no changes would occur until July 1.

‘PAYING GRANDMAS TO BE GRANDMAS’

Pillen signed significant income tax cuts during his first year in office, in 2023, for anyone making more than $18,000. Since then, he has faced significant budget challenges, which also complicated his plans for additional property tax relief, moving his proposals toward a shift from broadened or increased sales taxes.

Speaking with the Examiner ahead of the 2026 session, 69-year-old Pillen, who turns 70 in one week, said he’s old enough to remember when neighbors took care of one another and “government was not in this stuff.”

“I’m 100% to take care of the most vulnerable,” Pillen said. “But, I mean, the hardcore reality, we the people in Nebraska, in instances, are paying grandmas to be grandmas.”

Pillen said he has to ensure there’s accountability and not “waste and abuse.” He said DHHS had written $300,000 checks so Nebraskans aged 98 to 100 could stay at home, which he said “sure as hell” ought to be the exception, not the norm.

According to DHHS data, it’s unclear how many situations Pillen described have occurred. Powell said 95% of AD Waiver recipients already receive services “at or below the proposed budget limit” based on the nursing home rate. Green and Powell said 255 participants exceed the proposed cap of about $162,000, which is 175% of the nursing home rate.

Reed and Schriver said the high costs are for the most medically needy Nebraskans. Thomas added that 255 people might not seem like a “big deal,” but “it is if you’re that person.”

‘HOPE THAT THEY LISTEN’

A couple of Olmstead Committee members asked Green why he didn’t bring the proposal to the advisory group sooner, to which Green said he disagrees that the changes affect waiver access.

“Access to the waivers is still here, and preferred,” Green said.

State Sen. Victor Rountree of Bellevue is one of a handful of lawmakers watching the changes. He said he is and will remain “deeply engaged” and feels he is a voice, as he understands on a personal level how services and changes can impact a home.

His oldest of three children, 37-year-old Isaac, was diagnosed at age 4 with Fragile X syndrome, an inherited genetic disorder that affects the X chromosome.

“We have had tremendous people walk with us in the special needs arena,” he said. “I fight hard for special education and for the disabled community because I know what the needs are.”

Of possible waiver changes, he said that he has been digesting and trying to discern what it all means. He said he is eager to hear organizations and others weigh in by Jan. 5. He knows changes could impact many and that some could face possibly devastating decisions of sending their loved one to a care facility.

His son lives with the family and attends day services at Duet in Bellevue, a community-based provider for people with developmental and intellectual disabilities.

“Any time you have a restriction or a reduction in services, there is going to be a negative impact,” Rountree said. For people who require around-the-clock care, he said the changes “will be detrimental, almost destructive.”

DHHS plans to submit the state’s waiver renewal request to the U.S. Centers for Medicare and Medicaid Services in early 2026. DHHS anticipates savings after, but Powell repeatedly declined to give current agency estimates, citing the possibility that the proposal could change.

“I really, truly hope that they listen to us family members, as caregivers, as taxpayers, that our opinion truly counts,” Wohlers said, “because we are what the State of Nebraska is about.”

Nebraska Examiner senior reporter Cindy Gonzalez contributed to this report.

Nebraska Examiner is part of States Newsroom, a nonprofit news network supported by grants and a coalition of donors as a 501c(3) public charity. Nebraska Examiner maintains editorial independence. Contact Editor Aaron Sanderford for questions: [email protected].