When Kim Downes first explained to her daughter Haley that many people were getting sick and dying due to a virus, Haley asked, “Can we send them flowers?” As a 28-year-old with multiple disabilities, Haley interprets the pandemic’s severity through disruptions to her routine, like missing her beloved Special Olympics activities and not attending church on Easter Sunday.
For over 15 years, Haley has received support from the Mayor’s Youth Empowerment Program (MYEP), a group providing assistance to adults with intellectual, developmental and physical disabilities in the Iowa City community. MYEP typically serves 52 clients through 24-hour residential homes, like the one Haley lives in, and an Adult Day Program that engages 70 clients with community-based activities.
Over the past couple of months, however, MYEP put new residential home protocols in place and suspended the Adult Day Program altogether to keep their vulnerable clients safe from COVID-19. These changes, according to Chief Program Officer Megan Gerber, are especially necessary with MYEP because many residents and program participants have serious underlying medical conditions that make them more susceptible to COVID-19.
“With this population, there’s very little conversation about them in the press,” Gerber said. “They’re actually a very high-risk population, and ensuring their health and safety during this time is very challenging because many of them lack the skills and respiratory hygiene and understand[ing of] personal boundaries.”
Providers in MYEP’s residential program are considered essential workers and thus have remained in frequent, close contact with their residents throughout the pandemic. Staff are required to wear cloth masks at all times and monitor temperatures throughout their shifts. However, the close contact between clients and over 100 direct-care staff remains dangerous.
“Social distancing is very difficult with this population,” Gerber explained. “With a lot of their care, you do have to be very close to them to provide some of the care that they do need. There’s been constant communication, constant education going on [among staff].”
The residential homes have also enacted strict visitor restrictions where only essential visitors are allowed. As a result, many families have been allowed fewer visits than normal, or have not been able to visit their loved ones at all.
Though Kim is “very happy” with MYEP’s service and decisions thus far, she misses seeing her daughter as often as she used to.
“I’m the only thing that’s consistently in Haley’s life where she schedules her whole week around when Mom gets to see her, [but] it hasn’t been as frequent,” Kim said. “It’s difficult not being able to see her as much as I’d like, but I know it’s best for everybody involved.”
While the residential homes still function at full capacity, the Adult Day Program has shut down for the foreseeable future. On April 17, MYEP sent an email to clients and their providers explaining that the closure, which began on March 25, would go through May 31. It was extended a second time on May 18 through the end of June.
Gerber acknowledged that while this closure is necessary to ensure client safety, it is difficult for MYEP clients, saying, “With the [program] being shut down, we’ve got 70 people now where their days are pretty open. It’s been a significant shift for a lot of those people because their routines have been disrupted significantly.”
Kim agreed that changes made to the everyday lives of this population have potentially detrimental effects, as many individuals rely on having regular schedules and stability to continue functioning to their best ability.
“With our children with special needs, like Haley, consistency is the key to make their life go smoothly, and for them to reach their potentials, they need their routines,” Kim said. “When Haley’s routine is disrupted, it turns her whole life into turmoil [because] she needs to know what’s happening and what’s coming next.”
Anonymous participants in the Adult Day Program said that they missed the staff, their friends and engaging in the broader community, according to Gerber. One parent said about their son, “He misses his routine and being active and productive. He smiled when I asked him about MYEP.”
Aside from disturbing clients’ day-to-day activities, the Adult Day Program’s closure also means the loss of one of MYEP’s main revenue sources. Gerber estimated that the program’s closure over three months created a quarter of a million dollars of lost revenue. This depletion came as MYEP simultaneously increased their direct care staff’s pay an additional $1 per hour “due to potential risks they are presented with as essential workers.”
“We’re just trying to put everything in place to make sure we’re able to sustain our services for however long this is going to continue on,” Gerber said. “That’s what’s the most concerning, we just don’t know how long this will last.”
Gerber says the best way the Iowa City community can help support MYEP during this difficult time is by donating necessary cleaning supplies and PPE items such as cloth masks, hand sanitizers, toilet paper, paper towels and hand soap.
“These are very challenging, scary, uncharted times that we haven’t really been through, and so my goal is to … make sure that we can keep our staff and the people we serve healthy and safe through this.”