CENTERVILLE — Most days, hour after hour, Tyler Bourne hunches in a blue easy chair in his mother’s living room, watching the reality TV show “Wicked Tuna,” or crinkling up free magazines from Stop and Shop.
He overheats easily, so this time of year, the 37-year-old won’t leave the house for days, sometimes more than a week at a time.
His life wasn’t always so stagnant. Bourne, who was born with a rare chromosomal disorder that caused profound developmental disabilities, attended for about 12 years a day habilitation program, or day hab, in Mashpee five days a week, six hours a day. But over the past three years, he has been allowed back only rarely.
Bourne is among roughly 2,000 individuals, most of them people with complex medical or behavioral needs, who have been effectively exiled from day hab since the start of the pandemic, placed on waiting lists for a service that is much more than just day care. The programs also provide skilled nursing, physical therapy, speech therapy, group outings, and opportunities to socialize. But they are currently so understaffed, according to state officials and providers, that some are finding it difficult to provide one-to-one care for everyone who needs it.
Advocates for people with disabilities argue that the state has a legal obligation to do better. The state’s 151 day hab programs, they noted, are a Medicaid service, and must be made available to anyone who qualifies.
The Disability Law Center and the Arc of Massachusetts, both disabled advocacy groups, question the legality of keeping people on wait lists for years.
“We do certainly see it as discriminatory,” said Hillary Dunn Stanisz, senior attorney at the Disability Law Center. “They are now being excluded on the basis of the complexity of their disability and related support needs.”
Consequences for families are devastating. Bourne’s mother, Betsy Bourne, is among the many caregivers who have had to sacrifice, and even leave jobs, to care for disabled loved ones. Meanwhile, without a consistent day program, Bourne is regressing, according to an April evaluation from the Department of Developmental Services. Walking was never easy, but now, even with assistance, he can barely cross the living room of the family’s Barnstable home without collapsing. His mobility is so diminished his mother can’t get him into her car.
“He needs peer interaction,” said Betsy Bourne, 65, who hasn’t worked her job at a Cape Cod market since February. “He needs to get out of these four walls.”
Another former day hab client, Devon Sutton, has become less adept at using a device that helps him communicate. The 27-year-old, who has cerebral palsy, attended a program in Hudson that merged with another in Billerica just before the pandemic, said his mother, Kelly Sutton, 52, of Natick. That was too far away for him to attend, and no other programs in the area can provide the one-on-one care he needs.
He has become less mobile, too, Kelly Sutton said, which set off a domino effect of complications. More time spent in a wheelchair means constipation, which leads to medications with their own side effects.
“It’s obviously really frustrating and it’s also heartbreaking,” Kelly Sutton said. “You’re always trying to fill in the blanks of what’s not happening for your kid.”
MassHealth, the state’s Medicaid administrator, and the Executive Office of Health and Human Services were unable to readily provide the Globe with even basic information about day hab. Despite having two weeks to gather the information, state officials could not confirm how many day hab programs existed before the pandemic or a specific count of how many people are on waiting lists. State officials did not address whether it was discriminatory that an estimated 2,000 of the state’s most vulnerable people were not receiving services to which they are entitled.
“The Healey-Driscoll administration is deeply committed to ensuring that individuals with disabilities have access to critical resources that can help them live in their own communities,” a statement from the office of Health and Human Services said.
The office indicated at a public meeting, however, that it is well aware of the severity of staffing problems, both at day hab and in other programs for people with developmental and intellectual disabilities.
“This workforce crisis existed pre-pandemic, and has only been exacerbated by the pandemic,” said Mary McGeown, undersecretary of human services for the office of Health and Human Services, at a July 13 subcommittee meeting of the Commission on the Status of Persons with Disabilities.
The problem is so serious that MassHealth took emergency action last month, including offering day hab providers $12,000 bonus payments for each former client brought back.
Like it did with the rest of the health care sector, the COVID-19 pandemic threw the day hab space into turmoil. Statewide, 25 programs — about 14 percent — have either closed or merged with others since the pandemic began, according to Ellen Attaliades, chief executive of the Association of Developmental Disabilities Providers.
Meanwhile, many overworked and underpaid health care workers realized they could make more money in less taxing jobs in other industries. From 2019 to 2021, Massachusetts lost more than 10,000 workers from health care support jobs, which include home health and personal care aides, according to a Globe analysis of census data. Attaliades noted staffing was typically at 80 percent of pre-pandemic levels among members of her association.
Community Connections Inc., the company that runs the Mashpee program Bourne used to attend, has twice hired someone to work with him since the pandemic, said Joe Krajewski, the company’s chief operating officer. MassHealth funds providers to hire staff specifically to provide one-to-one care for people who need it.
Each time Bourne returned, but, “unfortunately, neither one ended up staying for a significant amount of time,” Krajewski said.
Day hab reimbursement rates typically lag behind other programs for people with developmental disabilities, who in some cases require less support, said Dunn Stanisz of the Disability Law Center.
At the beginning of this year, day hab direct service professionals made between $16 and $18 an hour, said Attaliades. And low staffing begets more departures, she said.
“There’s not enough people so the staff that are working are doing overtime, they’re taking extra shifts, there’s a burnout factor there,” she said.
The same staffing shortages keeping day programs understaffed also make it harder for families to cope without day hab.
Betsy Bourne won’t put her son in a group home, convinced he wouldn’t receive the same level of care she provides. MassHealth would cover home health services, but she can’t find people willing to work at Medicaid rates. Except for three hours of care she receives Saturdays and Sundays, she is on her own. She lives on Social Security payments, and has not been able to leave her home for anything but errands since one lunch with a friend in June.
“I felt guilty leaving him to go have fun,” Bourne said.
Tyler Bourne weighs about 100 pounds, and Betsy Bourne now needs a back brace when she moves him.
Whereas Devon Sutton used to get all the physical and speech therapy services he needed in one place, his mother must now locate providers and coordinate their services on her own. He receives physical therapy just once a week, less than he received at day hab, and his mother is struggling to find a speech pathologist trained to work with the device he uses to communicate.
“I had to piece it together in a different way so he doesn’t keep regressing,” Kelly Sutton said.
In July, the Executive Office of Health and Human Services took emergency actions to address the staffing shortage. The governor’s fiscal year 2024 budget proposal included an additional $200 million for day hab and Adult Day Health. Along with the $12,000 for providers who bring back former clients, the office also offered providers in July $2,000 for each person admitted to day hab for the first time.
The state’s $200 million commitment promises to allow the companies that provide day hab to bring hourly wages to around $19 an hour, Attaliades said.
Advocates are urging greater cooperation between MassHealth and the Department of Developmental Services to provide more home assistance for families whose loved ones haven’t been allowed to return to day hab.
“In a sense, the rest of society has gone back to work, school, and activities in their lives, and then people with these higher support needs . . . they’re kind of stuck in conditions that are close to COVID-like quarantine,” said Dunn Stanisz, of the Disability Law Center.
Despite Betsy Bourne’s dedication, her son continues to decline. Instead of getting physical therapy or stretching at day hab every day, he has a therapist who visits twice a week. His limbs are weakening or stiffening, and he has trouble extending his arms. He typically holds them tightly against his chest.
“Every night, I come downstairs and cry for what he’s lost, what I’ve lost,” Bourne said. “That our lives are just so different.”