As Nebraska looks to eliminate long waits for disability services, families wait, worry about plan
LINCOLN — Jennifer Meints expected her 21-year-old daughter would finally get approved this year for state-funded services to help her work, volunteer and live the fullest life possible with her multiple disabilities.
Her daughter, Grace, spent her first 15 years in and out of the hospital before her health stabilized. Growing up, she got Medicaid-supported personal care services at home and special education services at school.
Her family put her on Nebraska's waiting list for intellectual and developmental disability services about eight years ago, in hopes that her turn to be offered a shared living home and a day program with work and community activities would arrive shortly after she turned 21 and school ended.
A February letter from the Department of Health and Human Services made it appear as if that plan was working. The letter said she should get her offer of services this fall.
But a few weeks later, Gov. Jim Pillen made a bombshell announcement that the state would eliminate the waiting list for services and take a new approach to "reimagine how services are offered to individuals with IDD in Nebraska and save taxpayer dollars."
His announcement came with few details. State officials have offered few since about how the announcement affects those on the waiting list. Meints said she has been told unofficially the state is not currently extending service offers to people like her daughter, leaving the Lincoln woman feeling scared and desperate.
"I don't know where we stand," she said. "I don't know where we are. I cry daily just worrying about what is going to happen. What is my daughter's future going to look like?"
Six months after Pillen's announcement, Meints is far from alone in her confusion and fear.
During that time, Nebraska's developmental disabilities waiting list has actually grown, while state officials have struggled to implement a new Medicaid waiver program for children that officials describe as a key part of the new approach.
Families, providers and advocates continue to seek information about what changes the state is planning. They have raised questions particularly about how the state intends to serve more people while saving money.
Frustration, 'alarms' as state develops plan
Mike Browne, vice chairman of the state's Developmental Disabilities Advisory Committee, expressed those frustrations at a committee meeting this month.
"Where is the comprehensive plan that can be reviewed by us in totality or is it still in process?" he asked state officials. "We don't know. Nobody knows. We seem to be doing pieces and parts but there isn't anything pulling it together.
"The problem is this sets off all kinds of alarms with individuals who are out there already hurting and suffering," Browne said.
In a statement to The World-Herald, HHS officials said they have been working to provide information and get feedback about the initiative through a variety of means, including virtual and in-person town hall meetings, website updates, information booths at community events and mailings to families.
"The department understands that change can be difficult, however, eliminating the waitlist will ensure families have the individualized services they need to ensure they are supported and thrive," the statement said.
Tony Green, HHS developmental disabilities director, in a July 26 video update posted to the division's website, promised state officials would continue to work with families and providers on the changes and called the new approach a "work in progress."
"Gov. Pillen's initiative to offer services and supports to individuals with intellectual and developmental disabilities at the time they're needed is an innovative and extraordinary approach, but it is a process that will take time and collaboration to accomplish," he said. "We are creating a new continuum of care focused on needs and providing supports to everyone as opposed to only a few."
Nebraska provides services for adults and children with intellectual and developmental disabilities through Medicaid waiver programs. The waivers allow states to use federal Medicaid funds for home- and community-based services that keep people out of institutions.
As of Aug. 1, the state's three IDD waivers provided 5,349 people with services, ranging from help getting jobs and participating in the community to help with personal hygiene and activities of daily living. Some receive services while living with their families. Others live in apartments, homes shared with caregivers or in group homes.
Unlike traditional Medicaid, the waivers also allow states to limit participation, and Nebraska has long had a waiting list for developmental disability services, despite repeated attempts to provide services for all. As of Aug. 1, there were 2,848 people on the list, including 1,510 children. That's up from 2,712 on April 1, at the time of the governor's announcement.
About half of those on the list are getting some state-funded services, such as service coordination or day programs, while they wait for other services, especially options for moving out of their parents' homes. Almost all are getting Medicaid to cover health care costs.
History breeds skepticism; state says program will be funded
The only time Nebraska eliminated its waiting list, even briefly, was in 1995. Then-Gov. Ben Nelson pushed a plan under which services were offered to everyone on the list as of July 1 that year. But a new list began on July 2, and there were 400 people on the list by the end of August 1995.
Past proposals to serve everyone on the waiting list have been stymied by the price tag. In 2021, HHS officials estimated it would cost $54 million of state funds plus $71 million of federal Medicaid funds to provide needed services to the 2,964 people waiting at that time.
That history feeds into skepticism of Pillen's initiative. Using the new approach, HHS officials now estimate they can eliminate the waiting list with only $18 million of state funds and $26 million in federal funds. Their budget estimate allows for 2% increases each year to boost provider rates, according to the HHS website.
But the estimate was built on assumptions that only 354 people, or 13% of those on the waiting list, would get residential services under the new approach. Those services typically are the most costly. The estimate also assumes the number of people getting services will remain flat in future years, with the number of those who move, die or drop services balancing out the number added to services.
In their statement, HHS officials expressed confidence that the changes planned in Nebraska's developmental disability services system will make the budget work while providing people with the services they need.
Officials contrast the new approach to the previous one-size-fits-all approach. They said it will provide services and supports early, then adapt to individuals' changing needs as they age. It also will use new models of staffing, including telehealth, virtual support and more use of independent providers, who contract directly with families.
"Because this is a new approach and not everyone will need the same services/supports, costs are more evenly spread amongst the various options for service availability," the statement said. "This is the cause for differences from the old approach to our new approach."
HHS said Nebraska has enough money "for the time being" to eliminate the waiting list and, if future needs are greater, they would be addressed through a state budget request.
Kim Bainbridge, an Omaha mother, said she isn't reassured by the department's estimates. Her 35-year-old son waited seven years and seven days to get residential services, she said. He now shares an apartment with a friend and has workers come in to help him out. She worries HHS will eliminate the waiting list and make its budget balance by cutting services to people like her son.
"This is my fear," she said. "The money's got to come from someplace."
The lack of specifics from HHS about the new service continuum, including what services will be provided and what changes will be made in how and when people qualify for services, has contributed to those concerns. The worried remain despite assurances from Green that people will still be able to get more costly residential services without having to be in an emergency situation.
Another uncertainty is the department's move toward adopting a new assessment tool for determining what people need, a shift that began before the governor's announcement. A pilot project, comparing the new tool to the state's existing assessment system, is underway but won't be final until January.
Alana Schriver, a parent and executive director of the Nebraska Association of Service Providers, said Nebraska could benefit from a better assessment tool. But she said parents and providers are concerned about how the results of the assessments will be translated into services.
"We know they're looking for every dollar and dime they can put towards property tax relief, so the fear is that (service) budgets will magically or coincidentally drop when we switch to this new system," she said. "There's no trust."
The shaky rollout of a new waiver aimed at helping children on the waiting list has not helped matters.
The family support waiver, championed by State Sen. Machaela Cavanaugh of Omaha, allows the state to provide up to $10,000 a year worth of at-home services to 850 children. The services could include such things as specialized child care, independent living skills, respite care and home and vehicle modifications.
HHS made the first offers of services under the new program in March. As of early September, 408 families had accepted the offer but only 97 were actually being served. HHS officials told the advisory committee that the rest were still trying to navigate a tangled web of bureaucracy involving Medicaid, developmental disability and Social Security, or were searching for an approved provider.
While the department focuses on launching the family support waiver, officials said other offers of services, such as the one Meints expected for her daughter, have been put on hold. Officials did not say how long the pause might last.
"We just want our kids to be loved and safe and happy and healthy," Meints said. "We're not asking for anything crazy."
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