When Lance Heglund moved from his apartment to a group home, he lost some small things.
The freedom to open the window on a cold day without being scolded. The freedom to choose what you want to eat for dinner.
Then there were the bigger issues of a loss of respect and fears that inadequately trained staff might hurt him.
“It’s a huge loss of dignity, a huge loss of independence, a huge loss of participation in society,” said Ms. Heglund, 51, of Brooklyn Park, who has muscular dystrophy and was forced to move into a residential facility three years ago because she couldn’t find enough caregivers to meet her needs at her facility.
He worries that the state’s proposed overhaul of the disability benefit exemption system will force others to leave their homes or family residences and move into group homes or nursing facilities.
Minnesota is reviewing its Medicaid waiver system, which about 70,000 people with disabilities use to cover vital services such as employment assistance, transportation and help with daily living tasks like bathing, eating and dressing.
The Department of Human Services (DHS) is rethinking its waiver program to simplify the system and give people “more choice and control over their services.” Department officials said the proposed model would make more funding available to the majority of waiver recipients.
But early budget figures have sparked an outcry among those who rely on assistance, showing that people living in group homes will get much more assistance than those living at home or with their families.
“I worry that we’re going backwards,” Hegglund said. “We’re encouraging institutionalization.”
The backlash has prompted lawmakers in recent days to tighten requirements for Homeland Security officials to work with people affected through a so-called “waiver reconsideration” process, but many Minnesotans with disabilities and advocates remain wary.
What does “Waiver Reimagine” do?
Minnesota has four types of disability waivers based on need or diagnosis. These cover people with brain injuries, chronic illnesses, developmental disabilities or related conditions, and people with disabilities that require nursing home level care.
Under the new system, there will be only two exemptions: people who live at home or with their families will get one, and people who live in institutions such as group homes or assisted living facilities will get the other.
At the root of many advocates’ concerns is a chart released by the Department of Homeland Security in 2021 showing how much people living in different circumstances would receive annually under a reimagined system. The proposed budget varies based on an individual’s needs, but ranges from up to $87,298 for adults living with their families. People who own their homes would be eligible to receive up to $93,674.
Meanwhile, people living in community residential services such as group homes could be eligible to receive up to $210,064.
DHS officials said those figures will be updated. They said the budget is driven by the cost and utilization of services. Historically, people living in institutions such as group homes have utilized more service hours, while those living independently have utilized fewer service hours.
Disabled people say they are already struggling to cobble together the help they need to live at home amid a caregiver shortage, and they worry the proposed exemption would lead more care providers to seek funding for caregivers in group homes rather than those in private or family homes.
“The current exemption reimagining would absolutely take away rights for people with disabilities, number one,” said Lauren Thompson, 36, a disability rights advocate who has cerebral palsy and has had an exemption for more than 20 years. “Number two, it would be much more costly for taxpayers because more people would be pushed into more expensive services.”
Thompson served on the advisory board for Waver Reimagining but resigned due to frustration with the process not incorporating his feedback.
Lawmakers passed a new bill this session that mandates that the advisory group must be able to “collaborate in a meaningful way” in the waiver review process and in revising MnCHOICES, the state’s tool for assessing people’s needs and determining the services they need to lead a fulfilling life.
“We need to fundamentally rethink how we engage,” Natasha Mertz, deputy secretary for aging and disability services at the Department of Homeland Security, said at a legislative hearing this spring. “We need to hear from people. We need to show that their input has changed the direction of this project.”
Mertz said the state is trying to make the waiver more accessible. State officials want more people to be in control of their own money — managing their own budgets, creating plans to meet their needs and hiring workers. They’re also trying to create consistency across the state, Mertz said.
A 2019 Star Tribune report highlighted problems with the arbitrary and confusing system for distributing aid money and how inconsistencies between counties led families to move around in search of the care they needed. The report also examined issues with MnCHOICES, which is prone to crashes that disrupt services.
It is also difficult to review the evaluation
Families who rely on exemptions have also raised alarms about the ongoing revisions to MnCHOICES, warning that some are seeing their assistance cut after being assessed, even though their medical needs have not changed.
Katrin Bachmeier has four children with disabilities and is part of a Facebook group for families like hers. She said she sees posts about funding cuts and failed appeals against assessment results.
“We continue to lose appeal after appeal that really is life-threatening,” she said.
The waiver program will provide about $150,000 to Bachmeier’s 21-year-old daughter, Naila, who has cerebral palsy and a brain injury, so she can live with her family in their Eagan home and pay for her personal care assistant, Rachel Kalso.
Kalsou described her job as “an extra limb” for Naila. She makes sure the shampoo is properly rinsed out of her hair and that she takes her seizure medication. She also accompanies her to the beach and when Naila rides her tricycle, also paid for with the exemption.
Bachmeier said her family and others fear their funding will be cut as the state restructures the system.
The state is monitoring trends in the data and will analyze why people’s budgets are being changed, a Homeland Security spokesperson said in an email, adding that people can contact the department to discuss the changes.
State officials had planned to implement the reimagined exemption system in January 2026. Because of delays in updating the rating system and questions and concerns from local residents, it is now scheduled for spring 2027.
Sen. John Hoffman (D-Champlin), chairman of the Human Services Committee, said the voice of families needs to be listened to and respected in any overhaul of the system. He said putting more people in group homes “is the exact opposite of what we’re trying to do in the social services world.”
Hoffman said lawmakers required the Department of Homeland Security to ensure that changes to the exemption don’t cause unintended service interruptions.
Misty Okerlund, an attorney with the newly formed Disability Voice advocacy group, said she was skeptical the new law would change the exemption review process. If it doesn’t, she said, the disability community has options, including going back to Congress, suing or filing civil rights complaints.
“We’re going to be watching and we’re going to be organizing,” Okerlund said. “If we feel like Homeland Security isn’t going to work with the people they’re supposed to serve, we’re going to have to put our sticks in the fight.”