When James Wester arrives at his day program, he typically heads straight for an iPad and looks for a vacation video. Two iPads are even better — then it’s travel guide Rick Steves talking about Europe on one screen and Laurel and Hardy laughing it up on the other.
Some days, 27-year-old Wester will shake a tambourine in the music room or dance while one of the other clients at the day program for people with intellectual and developmental disabilities exercises to a Richard Simmons video.
Wester looks forward to his time at Community Living Alternatives in Aurora, and so does his 70-year-old mother, Christine. It’s about the only time during the week that she gets a break to have lunch with friends or run errands.
But Wester gets to go less often now. The day program, where attendees play games or attend art and cooking classes, can take only 10 clients each day compared with 20 a couple of years ago. The center had to cut the hours for Wester and others because it doesn’t have enough staff to take care of everyone. Wester comes only three days each week, although his Medicaid insurance plan has enough funding for four.
It’s a longtime problem in Colorado: Even when people with developmental disabilities are approved for Medicaid services, there isn’t the work force to actually sign up for them.
And the workforce crisis of the past two and a half years has made it worse. While the number of day programs for people with developmental disabilities has rebounded after a pandemic dip, families across the state say they’re struggling to find spots. The programs are open, but they are so short-staffed that they’ve had to cut hours for clients, keep huge waitlists and, in some cases, inform people they can’t come at all.
Community Living Alternatives has been trying to fill two positions for two and a half years. The center hired one worker in September, but she stayed just five weeks.
The reason is that day programs, which are reimbursed for services by the state Medicaid program, can’t afford to pay their workers more than they would make at a fast-food restaurant, said Gregg Wilson, manager of the day program at Community Living Alternatives. And the job, though rewarding, is more demanding.
“We are competing now with McDonald’s and Wendy’s,” he said. “It’s really hard to get people to show up for these interviews.”
Wilson’s program pays its employees about $17 per hour to care for up to five people at a time. He’s down to two workers, so that means 10 clients per day — in a spacious facility that once was KinderCare Learning Center — is max capacity.
Wilson, who has worked with people with disabilities for more than two decades, said it was easier to find workers when he first started out. They often were people who had grown up with a sibling or friend or neighbor who had developmental disabilities. “I can’t even find those people anymore, who have passion for this kind of work,” Wilson said. “And you have to have a passion for it, because nobody’s really getting rich doing that.”
Medicaid officials seek to raise base pay to $15.45 per hour
The salaries day programs can provide are directly connected to the Medicaid rates set by the Colorado Department of Health Care Policy and Financing and the state budget. The base wage rose to $15 per hour two years ago, up from $12.41. This year, the department is asking lawmakers to raise it to $15.45.
Many day programs already pay their staff more than that, dipping into other operational funds.
The number of day programs statewide dropped dramatically in 2020, when the pandemic kept people isolated at home. At first, the state Medicaid program continued to reimburse day-program providers even though they weren’t open, trying to ensure they could pay their staff and the rent. When the federal government cut off those “retainer payments,” Colorado officials shifted to allow day centers to get reimbursed for virtual programs, connecting with people via computer screens.
It’s taken two years to recover from the drop in services, but the number of day programs has rebounded to 2020 levels, said Bonnie Silva, director of the Office of Community Living at the state Medicaid division.
The number of people using day services has rebounded, too, she said. But many people stuck with the virtual option or switched to one-on-one services instead of group programs, Silva said. The department does not have data to determine how many people are using group day programs now compared to before the pandemic, but Silva has heard from people who are struggling to find openings.
“We are facing a workforce challenge that is unlike anything I’ve ever seen in my 20-plus career,” said Silva, who started her career as a caregiver for people with developmental disabilities.
Stay tuned for upcoming social media and radio ads that are part of a new campaign to draw people to the direct-care industry. The state Medicaid division is using federal coronavirus relief money for the marketing.
“I really believe pretty strongly that if we can get people in the door, they’re going to stay,” Silva said. “This is one of the coolest industries that’s out there. It’s just not well known to people.”
The department also has designed $9.5 million in grant programs for specialized, career-advancement training for direct-care workers, who often have no education beyond high school.
Colorado now has 291 “specialized habilitation,” or day programs, up from 248 in 2020. It’s also increased “community connections,” which are programs that take people with disabilities into the community to ride the bus, grocery shop or visit a park.
Residential services — in which a person lives with a host home or in their own home with a caregiver — have also increased, now at 421 homes compared with 337 in 2020, according to data provided by Medicaid.
Wester, who has a rare genetic disorder and the intellectual ability of a preschooler, is on a Medicaid program that funds his day program. He received services through Denver Public Schools until age 21, and then his mother began searching for day programs so he could socialize with others and get out of the house.
The search was daunting, and the programs were often so far away from their home near City Park that the drive was nearly an hour each way. Christine found one she thought was right for her son — but they quit after about a year because Wester started refusing to go, running around their front yard so his mother couldn’t catch him.
Three years ago, they found Community Living Alternatives. Wester has learned skills that his mother didn’t even realize, including using his fingers to move a computer mouse.
“It was far away from home, but I don’t care,” Christine said while picking up Wester from the day program this month. “I do 44 miles in the car on the days James is here — 22 roundtrip, twice a day. And it’s worth every mile.”
The rest of the week, Christine tries to keep her son busy. They have memberships to the Denver Zoo, the Denver Museum of Nature & Science and the Denver Botanic Gardens. She also pays out of pocket for a respite care provider who comes for four hours on two days per week.
But on days Wester is headed to his day program, he gets so excited that he starts goofing off in the car, putting his sunglasses on backward.
“He’s so safe and secure here, and happy,” Christine said. “He’s showing me, you know, ‘This is really funny. You’re gonna laugh at me because I’m happy.’ It’s like, wow, he’s excited.”
“How it all fell apart”
Glenn Junik, a Denver father of three boys, has been searching for a day program for his 30-year-old son Elliot for months.
The day program Elliot had attended for nine years informed the family in September that it no longer had enough staff. Elliot, who has a genetic condition called Angelman syndrome, has a tendency to run away, which means he needs one-on-one supervision.
“He has the heart and mind of a 4- or 5-year-old,” Junik said. “He is pure joy, pure love.”
Junik, 67, who took an early retirement from the software industry to care for his son full time, has visited about eight programs since September, begging them to enroll Elliot. “I haven’t had a break since Sept. 1,” he said.
He would love to see Colorado lawmakers dramatically increase pay for caregivers, many of whom left for other jobs during the pandemic. Before COVID hit, Elliot attended the day program and had caregivers who came to their home. In-home care screeched to a stop as people isolated.
“That’s how it all fell apart,” Junik said.