For parents like Anne Kaufman, the moments their kids reach certain milestones are unforgettable. One of those moments happened just a few months ago, when her 22-year-old daughter, Maya, performed on stage before dozens of people.
In knee-high, leopard print boots and a sparkly dress, Maya sang along to "Wunderkind," by Alanis Morissette.
"I was so proud of her and weepy, and I wished I had brought my Kleenex," Kaufman said.
The moment was both happy and sad for Kaufman, who said she wondered, "What could [Maya] have done if she weren't battling all these other challenges?"
Maya has schizoaffective disorder. It's a mental health condition that causes her to have hallucinations and makes everyday tasks difficult. She needs full-time care to get through the basic activities of life.
"If left to herself, she would not shower or take care of her hair or clean up her room or do her laundry," Kaufman said.
Getting Maya confident enough to perform on stage took a lot of work. For six years, she was a student at the Ivy Street School in Brookline, where caretakers and educators helped her develop social skills and a love of art.
But now that Maya is transitioning to adult services, Kaufman is anxious about the future. She worries whether she’ll get to see her daughter reach more milestones.
In Massachusetts, there aren't enough daytime programs available for adults with severe disabilities who need them, or who could benefit from them. Many facilities lack staff and placements can be hard to come by.
Since she aged out of school, Kaufman has struggled to find these services for Maya.
"There's the worry that she's sliding backwards because the programs that she might be in — and have to get up for in the morning — are too full or understaffed, and there's no room for her," Kaufman said.
Day programs provide structured activities designed to help people go out and explore their communities, connect with others and learn new skills. Many of these programs have taken a brutal hit since the start of the pandemic.
Severe staffing shortages have forced many facilities to reduce services or shut down completely. Kaufman said the situation is already affecting Maya.
Without a structured day program, Maya does fewer activities she loves, like painting. Instead, she often sits alone in her room napping or listening to music.
"She's in the home during hours that she ought to be somewhere else with her brain occupied," Kaufman said.
For people who work in the human services industry, which is more than 80% women, it’s no surprise that so many of their colleagues are quitting. The work is difficult, and the median pay hovers around $17 per hour.
Noel Lozada, incoming chapter president of the Service Employees International Union local 509, has worked with adults with developmental disabilities for almost three decades. She's an assistant manager at a residential facility in Danvers.
"The people who are here are burnt out, overworked and underpaid," she said. "I work 90 hours a week. Some days I come in, and I'm completely exhausted."
Lozada works so many hours because she needs two additional part-time jobs to keep up with her bills, which she said is typical for workers in her industry.
She said she loves her job and feels a deep loyalty to the people she cares for, but admitted she’s thought about leaving the field.
"We're nurses, we’re doctors, we're therapists, we're personal shoppers, we're cooks, we're maids," she said. "We wear so many hats, yet our pay matches someone who works at a fast food restaurant."
Residential and day programs, and home care services have long struggled to attract and retain skilled workers to care for people with disabilities. But over the last three years, people who work in this field say the challenges have multiplied. Many workers decided the low pay wasn't worth it, especially with the added health risks of COVID.
Ellen Attaliades, the president of the Association of Developmental Disability Providers, said the current staffing shortages are the worst she’s ever seen.
"What we're faced with is vacancy rates anywhere from 25% to 40% in the different kinds of programs we provide — some as high as 60% in programs like deaf services," she said. "It’s very hard to hire staff."
Attaliades said at least 4,500 individuals with disabilities in Massachusetts are on waitlists for day programs. Others have trouble finding any care at all.
That doesn’t just mean heartache for those thousands of people and their families. It can also bring serious economic consequences.
"It's concerning," Attaliades said. "People can be losing skills and are relying on their family members, or a number of family members have had to quit their jobs to stay home with their adult children."
According to the Massachusetts Department of Developmental Services, the state has dedicated more than $779 million to the human services industry since the beginning of the pandemic. That funding includes a mix of federal and state pandemic relief dollars. Some of the money was used to boost wages and recruit staff.
Attaliades applauded these efforts to prevent the industry from further collapse. At the same time, she said, more is needed to meet the demand for services. She wants to see a permanent increase in wages and financial assistance for costs like housing and education for workers in the field.
Another fundamental problem: There simply aren't enough workers in Massachusetts entering this field. Attaliades said the industry needs more visas to bring in workers from other countries.
"Salaries are important, but we need people to work," she said. "That's something that has not happened over the last few years."
Even if more visas come through and wages increase, it'll take time to rebuild a care workforce. Meanwhile, families like the Kaufman’s feel a sense of urgency.
She's 61 and works full time as a math teacher. Her husband can’t work because he has Parkinson's, so staying home to care for Maya is not an option for her.
"She's going to need care her whole life," Kaufman said. "I'm kind of an older mom, so I'm already thinking about what is going to happen to her when I'm not around."
After more than a year of searching, the state Department of Mental Health found a place for Maya at a residential facility in Quincy.
Kaufman is relieved that her daughter now lives in a safe place. But things are far from perfect. The facility doesn't have a fully staffed day program, so it's difficult for Maya to learn new skills and maintain the progress she made in school. Kaufman is looking for programs that can help her, signing on to seemingly endless waitlists, and doing what she can to give her daughter a chance at a better life.