Minnesota had a full-blown-direct support staff crisis before the COVID-19 pandemic. The loss of care staff since the pandemic began had compounded the staff shortage’s human impact and urgency. The staffing shortage has intensified the difficulty of keeping people with disabilities safe in their homes, and not forcing them into already overwhelmed nursing home and hospital settings.
“We were in a period of crisis before this,” said Jenny Kempfert , PCA Choice director of Duluth-based Arc Northland. “We had a significant staffing shortage before the pandemic hit.”
The Minnesota Legislature in April considered relief including a temporary pay increase for personal care attendant (PCA) program workers and changes to some care requirements including face-to-face nursing visits. As Access Press went to press, proposals were making their way through virtual House and Senate hearings. But with hits to Minnesota’s economy, the state’s financial condition may make it difficult if not impossible to find additional funding for care needs over the long haul.
When the 2020 legislative session began, Minnesota had a $1.5 billion surplus. While 2020 is a bonding and policy year and there is less focus on state budget issues, many disability advocates had hoped for additional funding for PCAs and for other programs. The PCA Reform Coalition began the session with a push for higher PCA wages, increased pay rates for those providing enhanced care, and more data collection.
Sen. Jerry Relph (R-St. Cloud) said he hopes to find the needed funding to meet the PCA needs. “But we’re also looking at the absolute decimation of our budget forecast,” he said.
“One of the biggest uncertainties now is that of resources,” said Matthew Bergeron of the Minnesota First Providers Alliances.
The PCA Reform Coalition and the Minnesota Coalition for Citizens with Disabilities (MNCCD) April 14 hosted a virtual forum for people with disabilities, caregivers, family members and agency staff. Almost 60 people from throughout Minnesota participated, as did representatives of the labor union SEIU and the Minnesota First Providers Alliance.
Many groups and self-advocates are seeking a temporary wage increase. Another ask is for adequate personal protective equipment for PCAs and other caregivers. A third request is for stepped-up COVID-19 testing for those who provide care.
Legislators listened as stories were shared. The pre-pandemic worker shortage has been complicated by several factors, said Jeff Bangsberg, board chairman of the Metropolitan Center for Independent Living (MCIL) and a leader in the PCA Reform Coalition. One wrinkle is that when colleges and universities shut down their campuses, students who worked in direct care went home weeks before the end of their terms.
Caregivers are finding other work and leaving the field for more money and less stress. Some can collect more money by going on unemployment than they can make working.
Throughout the state, people with disabilities cannot hire new staff. Some current staff members are staying home, fearful of becoming sick. Others have had exposure to a person with COVID-19, and are quarantined.
“We know that everyone’s experience is different,” said Tyler Frank of SEIU, the union representing healthcare workers. Workers have three main concerns. One question is how they can be paid for overtime. Another is how they can get sick pay as needed. A third need is for personal protective equipment or PPE, including gloves, masks, face shields and gowns.
For both clients and staff, one huge issue is the difficulty in finding PPE. MRCI Work Source provides PCA Choice service in 50 Minnesota counties, said Julie Lux, strategic relations manager for the Client Directed Services Department of MRCI. She described the unique circumstances Greater Minnesota communities face. “We’re desperate for personal protective equipment and cannot find it. We need gowns, gloves and masks.”
Many rural Minnesota residents don’t have easy access to stores to buy what they needed, Lux said. That’s even true of toilet paper, liquid hand soap and cleaning products. “When they do get to a store, there’s nothing there for them.”
Many struggles for clients, families
Clients have their own struggles. One woman, who has lost her 20 hours of staffing per month, told the group that she had to post on social media to have a stranger bring food to her home.
Many people with disabilities and their families are fearful about letting care workers into their homes. That problem is compounded in communities where there are cultural and language barriers. Not only are some agencies struggling to hire care workers, they also need to bring on interpreters.
“We have clients who are so scared, they won’t answer their phones,” said Pang Vang, a board member for the Minnesota First Providers Alliance and administrator at St. Paul-based Rainbow Health Kare.
Rainbow Health Kare has had phone calls at midnight and 1 a.m. from people seeking help, Vang said. “It’s a chaotic mess.”
Parents and family members of people with disabilities are stepping up, but at a high personal and financial cost to some. Autism Society of Minnesota (AuSM) activist and St. Paul parent Jean Bender’s family usually relies on four staff members to care for her son. Three cannot work at this time as they have had contact with COVID-19 patients. “In order to keep our son safe, we have to not let anyone in,” Bender said.
“It’s just insane, trying to manage it all,” said Carol Dinius, a parent from Duluth. “It just has this huge snowball effect.” Like Bender’s son, Dinius’ adult daughter is considered high-risk, so her family has to be extra-vigilant about care.
Having families step up has its own complications. Lux described a situation where a man whose father had to step up and start caring for his son. The father now faces the choice of losing his job, which pays more than direct care work, or staying with his son.
Addressing the worker shortage
Some PCAs and other direct care staff have been laid off. Jillian Nelson, AuSM’s community resource and policy advocate, also works part-time as a PCA. She has lost all of her hours due to the pandemic. “There’s no support for people like me,” she said. “I cannot qualify for unemployment; I cannot pay my bills … it’s just a frustrating time in this field.”
The Best Life Alliance, a statewide coalition of more than 130 organizations, is targeting those laid off as it touts the need for 18,500 skilled caregivers. The group has announced the #MeetTheNeedMN campaign to hire new support professionals for Minnesotans with disabilities. Part of the campaign is to appeal to an array of workers to join the disability services industry, not just those providing care.
“We know that many Minnesotans who worked in bars, restaurants and stores have recently lost their jobs along with many others who are experiencing employment uncertainty. Through #MeetTheNeedMN, we want to invite these valuable workers into our industry where the need for support professionals is greater than ever,” said Sue Schettle, CEO of ARRM, an association of more than 200 service providers in Minnesota and member of the Best Life Alliance.
“It’s a critical time for Minnesotans with disabilities. By bringing on more workers into this meaningful and rewarding field, we can ensure continued access to care throughout this crisis and create opportunities for displaced workers,” Schettle said.