Past wrongs leave little confidence in the next chapter of Nebraska Developmental Disability programs

Near St. Paul, Gage Scarborough sits on the couch at his dad’s farmhouse in central Nebraska, watching his favorite all-star wrestlers duke it out on a replay from earlier in the week.

The 22-year-old weighs about 70 lbs. He is a big fan of Cody Rhodes and asked his dad for a version of his championship belt.

His old, blue wheelchair sits in the corner of the living room which is good for quick trips to town and for getting around the house. Gage’s new motorized chair is in the entry room. He uses it for longer drives.

Next to Gage on the couch is licensed practical nurse Brenda Lieb. She helps him with daily activities like medication, hygiene and nutrition.

Gage was born with genetic birth defects and later diagnosed with type two micro-plasia dwarfism. He can’t live independently.

But his care is in jeopardy this fall, and the family isn’t sure what the future holds for Gage.

The Scarborough’s are one of several Nebraska families concerned about Gov. Jim Pillen’s promise to eliminate an extensive waitlist for intellectual and developmental disability services. Those services include group homes, day programs, respite care, occupational therapy, and more. None are covered by Medicaid.

To get benefits and services, 2,700 people with intellectual and developmental disabilities and their families have been on a wait list for six to eight years. That’s according to the Division of Developmental Disabilities with the Nebraska Department of Health and Human Services (DHHS).

In March, however, Gov. Pillen announced his intentions to eliminate the list, also called a registry, and enter people with intellectual and developmental disabilities into programs.

“This is the first time in Nebraska history the DD registry will be eliminated,” Pillen said in a statement.

The state tried and failed to eliminate the waitlist several other times in recent decades.

Families and advocates don’t think this time will be any different. Plus, Pillen’s plan is eliminating the waitlist by offering people fewer services than they signed up for, advocates said.

In April and May, DHHS held listening tours to explain the plan and hear questions.

With more than 170 people watching a virtual Zoom session, questions concerning funding for the program, availability of services and more piled up in the chat.

During those sessions, Director of the Division on Developmental Disabilities, Tony Green, said the process to phase out the waitlist is scheduled to take 12-18 months.

Joe Dondlinger works at Apace. It’s a Lincoln-based service provider that runs developmental disability programs. He said the funding won’t be enough to end the list at the same level of service offered in the past. A separate service provider also feels uneasy about their staffing levels and said the new program limits options for families.

In an email to Nebraska Public Media, spokesperson Jeff Powell said the department has sufficient funding for 2025. He said they’ll use $18 million in state funds and a federal match to end the list, totaling $44 million.

That estimate is based on the total number of people on the waitlist multiplied by the costs of various waivers like day programs or respite care.

All of these fears are amplified for at least one rural Nebraska family: The Scarborough’s.

'It eliminates choice'

Lieb, a family friend, has looked after Gage for nearly all of his life. She's certified as a licensed practical nurse (LPN) and one of the few caregivers in town.

St. Paul is just north of Grand Island, with a population of about 2,400.

Gage’s father, Laruen Scarborough, and Gage’s mother, Jennifer McDonald, lived near a farm that’s been with the Scarborough’s for generations, raising alfalfa and cattle.

About a decade ago, the couple separated and later divorced.

They have a split guardianship agreement that allows Gage to spend half of his time with each of them. Half of his weekdays are spent with Brenda. For the other half, McDonald drives him 20 minutes to Duet of Grand Island for a day program.

Clients in that program volunteer around the community and visit museums, McDonald said.

Gage has been on the waiting list for better benefits and services for the last seven years.

His parents said that St. Paul Public Schools did a great job of taking care of Gage. When he was 21, he aged out of school. In the first full year without school for Gage, his father, who is a self-employed electrician, said the family has been concerned about keeping his support during the day.

It costs the family about $3,300 total per month to have an independent provider like Lieb and to take him to Duet. That’s almost $40,000 a year. They receive a little more than $30,000 in benefits from the state, through a program called the Aged and Disabled waiver.

By September, they won’t be able to afford Lieb’s help anymore. That’s when Gage’s state benefits are expected to run dry, and he won’t get a new round of payments until January.

“It's the elephant in the room that's been scary,” Scarborough said.

When Gage was 4-months-old, Scarborough said, there was an instant connection between him and Lieb.

“I've loved it. I won't give it up. He's kind of like a second son to me,” Lieb said.

Scarborough said there’s a lot of anxiety for the future. Yet the past wasn’t smooth, either.

“DHHS… it's not family-friendly. It's not useful,” Scarborough said.

The department said in an email to Nebraska Public Media that it values communication by offering toll-free calls and updates on its website.

The DHHS website isn’t intuitive for finding information, Scarborough said. He said employees want to be helpful but sometimes don’t understand the department’s systems and several waiver programs.

The Scarborough’s also didn’t receive a letter that was supposed to outline the different services and benefits available once Gage aged out of school.

Scarborough also questioned the state’s assessment of needs process, because it classifies Gage as an intermediate level of care. But his father said Gage needs help with nearly every aspect of daily life and can’t be left alone for too long.

Jennifer McDonald works as a human resources specialist in Grand Island, which makes for a shorter trip from work to pick up Gage from his day program.

The benefits paying for Gage’s program will run out this fall, she said. But Duet has agreed to take care of him for unbillable hours, if necessary.

Both parents said working from home to watch Gage is not ideal. They have other bills to pay, and oftentimes their jobs demand in-person work.

McDonald said the developmental disability system needs to be overhauled.

“If there is some kind of provider book like it is for licensed daycare providers, they have a book that you can look for a daycare provider,” McDonald said. “You don't have anything with disability kids to look at. You have to find one yourself, which is a huge challenge for kids with disabilities.”

McDonald said the lack of communication is frustrating.

“I've learned more through the school system than I have through the DHHS system itself,” she added, “It's just scary, especially the changes that are coming.”

Historically, people with intellectual and developmental disabilities have been on the waiting list for something called the Comprehensive Developmental Disability waiver, according to Alana Schriver, Executive Director of the Nebraska Association of Service Providers. Her organization advocates for service providers across the state.

Comprehensive waiver dollars can be used for group homes or shared living, “which is kind of the Cadillac,” Schriver said.

“You sort of can make your choices of what you want that life to look like, which is how it should be,” Schriver said. “It should be self-determination. It should be person-centered. It should be up to that individual and their family.”

Residential services in that waiver are also the most expensive for the state, Schriver said.

In 2023, the comprehensive waiver cost the state about $88,000 per person, according to public records released earlier this year.

Even though it's more expensive than other programs, people on the comprehensive waiver are not getting more than they need, Dondlinger said.

Many kids and adults with intellectual and developmental disabilities in Nebraska are on Medicaid, which covers medical bills, but does not pay for day services, group homes or other developmental disability programs.

Through Pillen’s announcement, the only people with developmental disabilities who will receive the comprehensive waiver are people in traumatic situations. Those situations include homelessness, the death of a caregiver, or abuse or violence in the home, according to DHHS. Previously, it was based on the date a person entered the waitlist.

Schriver said the new rule explains why advocates “aren’t jumping for joy” over the plan to eliminate the waitlist.

“It's because they're eliminating it by essentially making it impossible to get that service,” Schriver said. “So, there's no waitlist, because you can't have it. So, I don't like it because, for me, it eliminates choice. It eliminates self-direction.”

Her son has a developmental disability. The discussion has surrounded ending the waitlist when it should be about how it’s funded, Schriver said. The DHHS support system is difficult to understand and maneuver, even for educated and informed people, she said.

One suggestion would be having the state contract a company to create a smartphone app to help families apply for services, Schriver said. Additionally, she said the word “waiver“ should change because many people think it means they’re deferring on Medicaid services.

Those not getting the comprehensive waiver will likely be connected with smaller, less comprehensive programs, like the Aged and Disabled waiver or the new Family Support waiver, a federal Medicaid program.

The Family Support waiver pays families $10,000 for 850 kids per year. In some cases, Schriver said the total would not cover a summer’s worth of day programs.

Under LB376 passed in the state legislature in 2022, a study was commissioned for examining the developmental disabilities system in Nebraska. A contracted company called CBIZ Optumas left the state with more than 20 recommendations for improvement including growing the caregiver workforce and streamlining the navigation of services.

In the virtual listening session, Tony Green said DHHS aims to improve staffing and will continue conversations with families to hear what they need most.

The Scarborough's use an independent, home health care nurse. It would be impossible finding any other caregivers in central Nebraska, Scarborough said.

“You don't find caregivers like what we've had, and everybody knows it,” he said. “Everybody knows it in town.”

Difficulty staffing and finding service options in rural areas is a huge challenge, according to Edison McDonald. He’s the Executive Director of The Arc of Nebraska.

“As you look across the state, you'll notice a trend is that outside of the Omaha and Lincoln area, the access drops radically,” McDonald said.

Edison McDonald said young rural families often struggle to find medical services and other support systems. He said there’s also a “hidden waitlist,” or a group of people approved for benefits and services who haven’t gotten into the programs they need, so the number of people needing support could be larger than 2,700.

In 2021, of the population of Nebraskans with intellectual and developmental disabilities, 71% are living with a family caregiver, according to a study by the University of Kansas examining 40 years of data.

Of those caregivers, 24% in the state are 60-years-old or older.

People are leaving Nebraska

Service providers can barely meet the current demand, Schriver said, especially for those who require multiple staff at a time. It’s a problem creeping into urban areas as well.

Pam Davis lives in Lincoln. Her daughter, Amber O’Gara, 45, wants to live in a group home. O’Gara has Williams syndrome, which is characterized by developmental delay and an outgoing personality.

The State of Iowa worked with Davis and O’Gara quickly.

They found an available group home in Council Bluffs near a golf course for O’Gara. During group outings to the farmer’s market in Omaha, she enjoys spending time with dogs.

“I’m a dog whisperer,” O’Gara said.

It took about two months to find, apply for and move into a group home through Iowa’s process, Davis said.

“It was just smooth going,” she said. “There was no calling people. There was no having to constantly ask for things.”

Finding a community for her daughter has given Davis peace of mind.

Even with the easy process and accessibility in Iowa, Davis and O’Gara would love to live closer together. Davis has grandchildren in Lincoln and wants to spend time with them. O’Gara wants to spend more time with her niece and sister. She’s also not a fan of the long car rides on the weekends.

But applying for services in Lincoln quickly made Davis realize that wasn’t possible.

“Even the day service programs, for them to have something to do during the day, was a six to eight year waiting list,” Davis said.

She said the lack of services causes people to leave the state, like her daughter did.

“It made me really sad that families from Nebraska have to actually move out of state to get their children services,” Davis said. “It is complete and utter neglect.”

Davis said the state needs to revamp the whole system and start from the bottom up. The newest attempt to end the waitlist hasn’t been encouraging for her.

After attending the DHHS listening session in Lincoln, Davis said she was lost and did not feel heard. People with intellectual and disabilities who have aging caregivers should be included on the comprehensive waiver, she said.

At least one other Lincoln family has not been as lucky as Davis and O’Gara.

Elizabeth works and lives in Lincoln (she requested her full name not be included to protect her son’s privacy) and needs to start saving for retirement.

Her son, 25, has Asperger's syndrome, a form of autism spectrum disorder. He’s highly intelligent but also has anxiety and depression.

He struggled in school and didn’t make it past the eighth grade. In recent years, he graduated from high school through an online program.

“He is a person who has a ton of capability to have a job, to get out into the public,” she said. “He's very smart, really wants to assimilate and have friends, have a purpose.”

Instead, Elizabeth and her family are left frustrated. They’ve paid for everything out of pocket, she said.

After their son couldn’t make it through school, she decided to stop working full-time.

“I stayed home because he was home,” she said. “He needed supervision. So, that was one less income. And so, we took $500-600 a month in medical bills, medication."

Through all of that, Elizabeth and her husband applied to get their son on disability services through the Social Security Administration. After being denied twice, they hired an attorney. Three and a half years later, Elizabeth’s son was approved.

Elizabeth thought the new disability designation meant her son could become independent with job coaching, which costs about $75 per hour. Her family couldn’t afford out-of-pocket pay this time.

DHHS said it sent a letter when her son turned 18 to start services, but the information never arrived.

“And I said, ‘we never received a letter.’ I have kept every single piece of paper and records. I know I did not get a letter,” she said.

After thinking they could get him onto benefits as soon as he became an adult, Elizabeth’s family recently found out their son would be put on a four-year waitlist, despite being approved for disability more than a decade ago.

“We are a family who has done absolutely everything we knew how to do,” Elizabeth said. “And it's frustrating that he's not getting the services that he's entitled to. And it makes financial sense for the state to give him the services so that he can be off the benefits and make a living.”

She said they thought they were doing everything right by paying for things on their own, but now Elizabeth isn’t sure that was the right decision.

“It takes up your entire world,” she said of taking care of a child with a developmental disability. “And it's been very, very hard on my marriage.”

Elizabeth said her son just needs some light support to thrive.

“You want them to have the best life they can have, and he's not close to having the best life he can,” Elizabeth said of her son, who stays home most of the time.

She knows families have moved to other states because services are more readily available.

Elizabeth is skeptical of the new program but hopes it works out for everyone.

“I'm trying to be optimistic but realistic,” she said.

The funding

Because of failed attempts to eliminate the waitlist in the past, families and providers want to make sure there’s enough funding for this go-around. Multiple people say they don’t believe there will be enough.

Dondlinger worked at DHHS for seven years, including serving as deputy director of finance for the Division on Developmental Disabilities from 2016 - 2021.

He said distribution of the comprehensive waiver will be more restrictive. Dondlinger said fewer people will receive residential services under the new format.

“It's a pretty major redefinition of what it means to be waiting on this list,” Dondlinger said, adding, the cost of ending the waitlist should be closer to $135 million — not $44 million, he said.

However, Dondlinger said the smaller waivers DHHS hopes to issue could expand services to more people.

Green with the Division on Developmental Disabilities at DHHS said previous estimated costs to end the waiting list looked solely at the comprehensive waiver program for the 2,700 people on the waiting list.

“This new approach really takes all of these families to say, ‘because we're going to offer a whole array of services immediately, you're not going to need that comprehensive waiver,’” Green said in an interview with Nebraska Public Media in March.

Many families might just need respite care or Medicaid, Green said.

Despite this new idea, Dondlinger said there needs to be more transparency from the DHHS on how they came up with its $18 million state and $26 million federal funding estimates.

“I really think it would take more funding to really make this work,” Dondlinger said. “I would like to see the division really share more details about how they came to the number of $18 million. They've shared some details around eligibility for services and how they think that might have changed, but $18 million is a very specific number.”

DHHS and service providers could work with the school system to better inform and educate families before their child turns 21, Dondlinger said.

State Sen. Myron Dorn of Adams, Neb., is a senior member of the Appropriations Committee. He said DHHS came up with an extra $18 million that was unspent, to fund the end of the list.

“But without continued funding, and without some provider rate increases and stuff like that, this is something that's going to be a challenge for us, as we go forward every year,” Sen. Dorn said.

There aren’t enough unspent dollars to cure the problem right away, he added.

Dorn doesn’t know of a specific bill for next session to address provider rate increases and overall funding of the program, but said proposed bills usually are discussed starting in September.

Scarborough said he believes everything in this space comes down to funding, and he doesn’t think there will be enough to go around.

“Getting funding is different than getting fully funded, because we're getting funding now. But I'm only getting funding for three-fourths of the year,” Scarborough said. “I'm not getting fully funded.”

Getting fully funded would be an enormous weight off the Scrabrough’s shoulders. He said it would be similar to when Gage was in school.

“The biggest thing is that the caregiver that I've had for 22 and a half years, I know I'm going to have,” Scarborough said. ”I don't have to try and find somebody or anything like that. It's going to be the consistent, loving care that he's always had.”

Most people can go about their lives without thinking of Nebraskans with intellectual or developmental disabilities, Alana Schriver said.

“If you don't have a friend or a family member with a developmental disability, you have the luxury of never thinking about this community,” Schriver said.

She said the latest push for race and gender inclusive programs across America should also include helping people with developmental disabilities. People want to assume this is a population that’s already taken care of, Schriver said.

The Scarborough’s would agree that's not always the case. Scarborough said it was difficult to ask for help too.

With micro-plasia dwarfism, many young people don’t survive into their 20s because of aneurysms and blood vessel issues, he said.

“That was the stress that we just felt we couldn't, you know, one of us had to be there that knew how to take care of him,” Scarborough said.

The two parents are also in their 50s, which means they will need more help caring for Gage on nights and weekends soon.

Add it up, and that’s a lot of stress.

But in recent years, Scarborough and McDonald have come together to try to get Gage the care and dignity he needs.

“The main thing has always been is that we're advocating for our son,” Scarborough said. “We’re always going to do whatever possible to make it the best thing for him.”

Editor's Note: Rachel Schnelle contributed to the reporting of this story.