Minnesotans with disabilities face growing waits for home care services amid surge in demand

On an afternoon last September, Maija Hitt was discharged from a hospital in St. Paul with no idea of how she was going to survive on her own.

The 41-year-old had just experienced a mental health crisis and was suffering from a host of debilitating symptoms — including severe migraines, depression and insomnia — that made it impossible for her to care for herself. Desperate, she called a Ramsey County hotline to access home care services.

But weeks passed, and Hitt heard nothing. Then months went by, and Hitt began to grow dizzy from lack of food and sleep. Her anxiety and depression reached the point where she struggled to get out of bed. "It felt lonely and dehumanizing, like the wait would never end," said Hitt, who works as a medical transcriber.

Hundreds of Minnesotans with physical and mental disabilities are experiencing prolonged waits for crucial social services because county governments are failing to keep pace with a surge in demand amid a workforce shortage. In Hennepin and Ramsey, the state's two most populous counties, more than 1,600 adults and children are languishing on wait lists to be evaluated for services such as personal caregiving that would enable them to live more independently at home.

Counties are scrambling to clear the growing backlogs but the waits can be excruciating and potentially dangerous for people with urgent health needs. Those waiting for services include people who have suffered brain injuries, strokes and other debilitating injuries, as well as those who are unable to care for themselves because of mental health problems, say disability advocacy groups and county social workers. In Ramsey County, the average wait time to get assessed for in-home care through the state's Medicaid program is five to six months.

The extended waits violate a state law designed to help people with chronic health needs and disabilities get timely assistance to home care. The law requires counties to conduct evaluations for Medicaid services within 20 days after a person requests one. These evaluations are vitally important: Without them, Minnesotans who are eligible by Medicaid often are unable to access a variety of in-home supports, including personal care aides, physical therapy, medical equipment and transportation to work.

"There is no legal or statutory basis for these long waits," said Barnett Rosenfield, state ombudsman for mental health and developmental disabilities. "What if you need nursing care to survive on a daily basis and you're not getting it? Telling someone to wait six months is not an effective or humane way to ... ensure access to needed services."

County officials and nonprofits that serve people with disabilities said the waits stem from a workforce shortage and a growing number of people seeking help to live at home. Since the pandemic, demand for home health care has surged as people feared going to nursing homes and hospitals for risk of infection. Some still are afraid to return to congregate care settings after relatives were locked out for months. Moreover, a return to the workplace has meant that many adults can no longer provide care for their aging parents or other loved ones with disabilities, disability organizations say.

The delays come at a time of turmoil for Minnesotans with disabilities who are too sick or frail to care for themselves. The state's social safety net remains frayed amid a severe and worsening workforce crisis. Some adults with cerebral palsy, autism, brain injuries and other disabilities are being forced to move home with their parents or into four-bedroom group homes where their daily life choices can be more controlled. Even after people are evaluated and approved for assistance through Medicaid, it can take months for families to find home caregivers, say disability advocates.

"These waits are a symptom of a much bigger problem," said Andrea Zuber, chief executive officer of Arc Minnesota, a disability advocacy group on St. Paul. "We have a system of care that is not sustainable for people with disabilities and for people who are aging."

The number of Minnesotans receiving evaluations for in-home care through the state's application system, known as "MnChoices," has increased 26% in the past five years, reaching nearly 88,000 assessments in 2021, according to the Minnesota Department of Human Services.

In Ramsey County, some people have been waiting since March for assessments for in-home care through MnChoices. As of Aug. 10, some 1,100 people in the county still were waiting for these evaluations, which typically are done in a person's home by trained county assessors. In neighboring Hennepin County, the wait list for initial assessments is about 500 people, but the backlogs have grown. For Hennepin County residents who received MnChoices assessments in July, 43% received them within the 20-day window mandated under state law — down from nearly 80% in May of 2020, officials said.

Maria Sarabia, aging and disability services manager for Ramsey County, described the waits as unacceptable and said the county is working on strategies to reduce the backlog. Those include shifting staff priorities so that more county employees, including case managers and supervisors, can conduct assessments. The county also is encouraging more flexible work arrangements so staff can spend more time in the community where assessments typically occur, rather than in the office, she said.

Both Ramsey and Hennepin counties are prioritizing MnChoices assessments for people with more urgent health needs, including those who recently have been discharged from hospitals and other facilities.

"We are not providing the level of service that we want to," Sarabia said. "We're in the process of trying to rise to the occasion of the unprecedented demand. ... It's a heavy lift, but we're committed to seeing it through and we hope to be in a better place by this time next year."

Jillian Nelson has firsthand experience with the delays.

As a community resource specialist and policy advocate for the Autism Society of Minnesota, Nelson said her organization receives dozens of calls each month from people stuck on county wait lists for MnChoices assessments. Many are working parents struggling to care for their children with behavioral problems. They are seeking advice on how to move up the wait lists. Time and again, Nelson has to deliver a dispiriting message: That waits can be six months or longer and there is nothing her nonprofit can do to expedite the process.

"Sometimes we are hearing from people who are in complete crisis," Nelson said. "I hang up the phone and think, `I wonder what's next for them, and how much worse is the situation going to get before they receive the help they need.'"

Hitt said it took eight weeks of persistent calling before a county social worker was able to visit her apartment and evaluate her for services. Now, she has a personal care aide who helps her bathe, dress and cook meals each day, and her mental health has improved dramatically.

"I'm in a much better place," she said, "but I worry about all those people who are too cognitively or physically impaired to push past the barriers."