Caregiver shortage means grief and stress for people with disabilities and their families

For parents like Anne Kaufman, the moments when their children reach certain milestones are unforgettable. One such moment happened just a few months ago, when his 22-year-old daughter, Maya Kaufman, performed on stage in front of dozens of people.

In tall leopard-print boots and a sparkly dress, Maya sang “Wunderkind,” by Alanis Morissette.

“I was so proud of her and I was crying, and I wish I had brought my Kleenex,” Kaufman said.

The moment was both happy and sad for Kaufman, who said she wondered, “What could [Maya] would have done if she wasn’t battling all those other challenges?”

Maya has schizoaffective disorder. It’s a mental health issue that causes him to hallucinate and make daily tasks difficult. She requires full-time care to carry out the basic activities of life.

“If left to her own devices, she wouldn’t shower, take care of her hair, clean 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 Ivy Street School in Brookline, where caretakers and educators helped her develop her social skills and love of art.

But now that Maya is moving into adult services, Kaufman is worried about the future. She worries about whether she will see her daughter achieve more milestones.

In Massachusetts, there are not enough day programs available for adults with severe disabilities who need them or who could benefit from them. Many institutions are understaffed and placements can be difficult to find.

Since leaving school, Kaufman has struggled to find these services for Maya.

“There are fears that she might back down because the programs she might attend – and for which she has to get up in the morning – are too full or understaffed, and there is no room for her,” said said Kaufman.

Day programs offer structured activities designed to help people get out and explore their communities, connect with others, and learn new skills. Many of these programs have been hit hard since the pandemic began.

Severe staff shortages have forced many facilities to reduce services or close altogether. Kaufman said the situation is already affecting Maya.

Without a structured day plan, Maya does fewer things she enjoys, like painting. Instead, she often sits alone in her room to take naps or listen to music.

“She’s home for hours when she should be somewhere else with her brain busy,” Kaufman said.

For people who work in the personal services industry, which is over 80% female, it’s no surprise that so many of their colleagues are quitting. The work is difficult and the median wage hovers around $17 per hour.

Noel Lozada, new president of Service Employees International Union Local 509, has worked with adults with developmental disabilities for nearly three decades. She is an assistant director in a residence in Danvers.

“The people who are here are exhausted, overworked and underpaid,” she said. “I work 90 hours a week. Some days I come in and I’m completely exhausted.”

Noel Lozada folds clothes at a residence in Lynn where she works as a homemaker.  (Jesse Costa/WBUR)
Noel Lozada folds clothes at a residence in Lynn where she works as a homemaker. (Jesse Costa/WBUR)

Lozada works so many hours because she needs two extra part-time jobs to meet her bills, which she says is typical for workers in her industry.

She said she loved her job and felt deep loyalty to the people she cared for, but admitted she had considered quitting the field.

“We’re nurses, we’re doctors, we’re therapists, we’re personal shoppers, we’re cooks, we’re cleaners,” she said. “We wear so many hats, yet our salary matches someone working in 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 past 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, president of the Association of Developmental Disability Providers, said the current staffing shortages are the worst she has ever seen.

“What we are facing are vacancy rates ranging from 25% to 40% in the different types of programs that we offer – some as high as 60% in programs like services for the deaf”, a- she declared. “It is very difficult to hire staff.”

Attaliades said at least 4,500 people with disabilities in Massachusetts are on waiting lists for day programs. Others struggle to find care.

This does not only mean grief for these thousands of people and their families. It can also have serious economic consequences.

“It’s worrying,” Attaliades said. “People may lose skills and rely on 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 spent more than $779 million on the human services industry since the pandemic began. This funding includes a mix of federal and state pandemic relief funds. Some of the money was used to raise salaries and recruit staff.

Attaliades applauded these efforts to prevent the industry from collapsing further. At the same time, she said, more is needed to meet the demand for services. She wants to see a permanent wage increase and financial assistance for costs like housing and education for field workers.

Another fundamental problem: There simply aren’t enough workers in Massachusetts going into 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 hasn’t happened in recent years.”

Even if more visas are issued and wages rise, it will take time to rebuild a caring workforce. Meanwhile, families like the Kaufmans feel a sense of urgency.

She is 61 years old and works full time as a math teacher. Her husband cannot work because he has Parkinson’s disease, so staying home to care for Maya is not an option for her.

“She will need care all her life,” Kaufman said. “I’m a bit of an older mum, so I’m already thinking about what’s 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 in a residential facility in Quincy.

Kaufman is relieved that her daughter is now living in a safe place. But things are far from perfect. The facility does not have a fully staffed day program, so it is difficult for Maya to learn new skills and maintain the progress she has made in school. Kaufman searches for programs that can help her, joining seemingly endless waiting lists and doing what she can to give her daughter a chance at a better life.

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