Ryan Teed is 25. He lives at home, but he enjoys working at Starkey, a hearing aid company, and volunteering at Presbyterian Homes to work with seniors. He has friends at work and takes pride in his pay check. Ryan also has Down Syndrome. Through organizations such as Lifeworks and St. David’s Center for Child and Family Development, Ryan can work, volunteer, and have a social life. He also has a PCA who helps him with his daily cares at home. His mom, Barbara Teed is worried about what would happen if Minnesota state government shuts down and the services he receives are not deemed essential.
“Would Ryan just sit at home and lose some of his quality of life?” she asked. She is also concerned about how he would handle the changes. “He wouldn’t understand what was going on,” she continued. “What would I tell him? He doesn’t understand the politics that affect him. All of us like to feel productive.” [FULL DISCLOSURE: Barb Teed is a freelance writer who often reports for the TC Daily Planet.]
Lifeworks is a nonprofit that serves about 2500 people with disabilities and their families. One of its services is providing jobs—some with well-known companies—in the community for people with disabilities. Missing work could mean losing jobs. Judy Lysne, president of Lifeworks, explained: “It’s very isolating to be at home. Our vision is for people to be part of the ordinary community. Jobs are particularly important to people. One of the first things people ask is, ‘What do you do?'”
Many services that individuals with disabilities receive are paid for by Medical Assistance, a state program. Governor Mark Dayton has petitioned the Ramsey County court to order that essential services could continue in the event of a government shutdown. Last week, he expanded the list of essential, or critical, services to include payments of Medical Assistance and other programs. (For a list of core services include in the Governor’s petition see the Critical Services list.)
While the governor’s action brought some relief, the uncertainty remains. On Thursday, June 23, the court hearing that will decide which government services are essential began. As of press time, no decision had been made.
Pamela Hoopes, director of the Minnesota Disability Law Center, explained that the critical services included on the governor’s and attorney general’s petitions “are a pretty good protection covering most of the services that people with disabilities need. If the core services list is limited, the services not included would be harmed. Even if all the services are ratified by the court there will still be issues that will affect those with disabilities.” However, she added, “It’s hard to speculate because the lists are very, very broad. There are so many different types of services.”
Although the hope is that the court will decide that all the critical services listed are essential, people with disabilities, their families, and organizations have been busy developing contingency plans. For some providers this couldn’t have come at a worse time.
“Medical Assistance did not fully pay June payments to all providers in the community. So we are already short,” said Julie Sjordal, executive director of St. David’s Center. The organization provides services for nearly 2000 children, adults, and their families, including those with disabilities. The programs most heavily affected by a lack of funding would be their early intervention programs and services for those who will have special needs throughout their lifetime.
“If Medical Assistance is not considered essential, it becomes a significant cash flow problem for us,” said Maureen Walsh, director of community relations and development at St. David’s Center.
Lysne, from Lifeworks, agreed. “It’s really a cash problem. We would continue to provide services as long as we can … at some point we wouldn’t have the cash to continue.” The challenge for such nonprofits is figuring out how to provide care and services while making the necessary changes to keep operating.
Representatives of both organizations felt confident in their ability to create a plan that would meet the challenges while allowing them to continue to provide services to individuals with disabilities and their families—at least in the short term. But even after a government shutdown, there could be problems.
With or without payments from the government, St. David’s Center and other providers are required to continue to provide direct services to current families. However, once a new budget is negotiated, the next concern would be reimbursement for services provided during the shutdown.
“Some services may not receive reimbursement because those services were cut during the negotiations,” Sjordal said. Other services could receive a payment rate reduction. Not receiving reimbursement or adequate payment for services provided could have long-term implications for the future and the ability for organizations to continue to respond to the needs of those they most want to serve.
“Children and families we serve are our first concern,” said Stephanie Combey, director of center-based and clinical services at St. David’s Center. A decrease in support would be a burden to families wanting to keep their children at home and maintain their jobs. It would also become harder for children and adults with disabilities to be a part of their community.
With a disruption in services, Barbara Teed and her husband would have to miss work. They would make sure to take Ryan out of the house, but it wouldn’t be the same. “He really depends on human services to get him out in the world,” she said.