Monday through Friday, my Aunt Lauren wakes up, takes an antidepressant with her oatmeal and eggs, and watches two of her housemates leave their group home in Massachusetts for the day while she stays behind. Lauren, who has complex cognitive disabilities, a seizure disorder, and is minimally speaking, spends most of her days sitting in a recliner listening to music. 

Her two housemates, however, spend their weekdays at day habilitation programs, which are community-based programs for people with intellectual and developmental disabilities. “Day habs” provide therapeutic services and structured activities that promote independence, such as occupational therapy, crafts, and help with daily living skills. These programs, primarily funded by the state’s Medicaid program MassHealth, are also a way for disabled people to socialize and build a community outside of their homes.

Until 2020, Lauren attended day hab for more than 20 years. When the COVID-19 pandemic hit, Massachusetts’ day habs either temporarily closed or shuttered entirely. When the remaining programs reopened after the lockdown, many didn’t have enough staff to accept all their former clients or admit new ones.

As of October 2024, more than 1,000 people in Massachusetts were waiting to be accepted into a day hab program, according to a survey conducted by the Association of Developmental Disabilities Providers (ADDP). At least 264 of those people, including my aunt, were enrolled in day hab before the start of the pandemic and, more than five years later, are still waiting to be readmitted. 

As day habs battle a workforce crisis that was exacerbated by the pandemic, disabled people are declining both mentally and physically. 

“People who were once receiving services in day hab programs are home just waiting, or they have limited access to their day hab,” said Maura Sullivan, CEO of the nonprofit Arc of Massachusetts, which advocates for people with intellectual and developmental disabilities. “And the huge concern is the devastating effect on the individual without this kind of support.”

Workforce crisis

Nearly 20 years ago, researchers at the University of Massachusetts Donahue Institute warned of a growing day hab workforce crisis in a report commissioned by the Massachusetts Council of Human Service Providers. 

“Absent significant public policy attention, Massachusetts human services employers can expect to find it increasingly difficult to find workers willing to provide essential services to vulnerable populations in a highly demanding work environment for relatively low wages,” the authors wrote.

The Donahue Institute’s prediction was correct. Today, day hab providers are struggling to find and retain staff, and without increased funding from the state, providers can’t offer competitive wages. The low pay, coupled with the physical demands of the job, often drive day hab workers to look elsewhere for employment.

“While recent investments [from the state] have made a meaningful difference, we know that people can choose other professions where the pay is greater and the jobs are less demanding,” said Ellen Attaliades, president and CEO of ADDP, in an email.

For over a decade, the amount of funding that day hab providers received from the state was notably low. Sullivan explained that in the 10 years leading up to 2023, Massachusetts had only minimally increased reimbursement rates. “It was a decade where [the rates] just didn’t move enough with the cost of living,” she said. 

Then in 2023, the state allocated $200 million to day habs and adult day health services. As part of this budget increase, MassHealth provided a 33% rate increase for day hab services. The state’s Medicaid program also began offering day hab providers one-time bonuses for accepting clients: $12,000 for each returning day hab member and $2,000 for each new member. But despite the increase in funding, it’s still not enough. 

The Massachusetts Executive Office of Health and Human Services, which MassHealth is a part of, declined to comment.

Today, MassHealth reimburses day hab providers between $125.91 and $414.09 per day for each full-time member, based on the person’s level of needs . Providers use the reimbursements to cover operational costs, vehicles, travel expenses, activity costs, and administration and staffing expenses, including salaries and wages. Because these reimbursements are stretched thin, providers still struggle to offer competitive wages.

Hourly wages for staff members at Massachusetts day habs can run as low as $17 per hour, according to recent job listings. In Massachusetts, where the average cost of living has exceeded $53,000 per year, $17 per hour isn’t enough to cover essential expenses such as housing and food. To afford to live in Massachusetts, workers need to make more than $28 per hour, according to the Massachusetts Institute of Technology’s Living Wage Calculator. 

Not only do these jobs pay meager wages, but working at a day hab is demanding, and staff members often don’t have the resources they need to be successful. “A lot of turnover can happen because there’s not enough training, and we have people with very little experience working with individuals that have complex and dynamic needs,” Sullivan said.

Job demands and low pay effectively turn people away from open positions at day habs. According to ADDP’s October 2024 survey, 16% of positions in Massachusetts day habs were vacant. While the vacancy rate in the state has improved since the pandemic, it is still much higher than Massachusetts’ overall job vacancy rate of less than 5%.

“While day habilitation vacancy rates have seen modest improvements, hiring challenges remain significant in the human services sector, particularly for key nursing and clinician positions,” Attaliades said.

These vacancies have a direct effect on disabled people, especially those with a high level of need.

“Staffing challenges can mean longer waitlists for individuals in need of services as the demand for human services employees continues to outpace staffing capacity,” Attaliades explained. “The waitlist for services has shrunk in the last year, but there are still too many families waiting for services. Even one family waiting is one too many.”

Bearing the brunt of systemic failure 

Due to these system failures, disabled people—especially those with complex disabilities—are suffering.

Without a placement in one of the state’s 130-plus day hab programs, people with disabilities are experiencing a dangerous decline in health. They are more susceptible to skin breakdown and infections, weight gain, muscle loss, and decreased range of motion, according to a 2020 report published by ADDP. Some have lost their ability to walk, self-toilet, and self-feed. My Aunt Lauren, for example, now has increased difficulties using a spoon to feed herself. 

To prevent further decline, some families take on the role of trained nurses to make up for the loss in therapeutic services that day habs offer. 

This is true for Massachusetts resident Tana Jenkins. Her niece, Juannay Jenkins, 29, has not attended a day hab program since 2019, first due to surgery and then the lockdown. It’s important for Juannay, who has cerebral palsy, to fight muscle stiffness and improve mobility, so Tana helps her do “range of motion” exercises. “She only has what we give her,” Tana told Prism. 

But as Kelly Sutton has come to realize, not all services can be done at home. Her 28-year-old son, Devon Sutton, has not been able to return to day hab since before the pandemic. Over the last few years, Devon has lost some of his communication skills. He previously received speech therapy at day hab, and his mother isn’t able to provide the same level of therapeutic services at home. 

Along with their physical needs, disabled people’s social needs are also not being met without day hab. Day hab provides clients the opportunity to make friends and socialize. Without day hab, disabled people lose their community. 

Like my Aunt Lauren, for several years Gabe Raagas, a 32-year-old with autism, has watched his four housemates leave for their day hab programs. “He might ask about where his housemates are going, but he knows,” said Lucas Raagas, Gabe’s younger brother.

Earlier this month, Gabe was finally accepted into a day hab program and is now awaiting his start date. 

In the meantime, Gabe spends weekdays doing activities such as shopping or walking around an amusement park with a one-on-one caregiver. On weekends, he hangs out with his housemates. But Gabe’s family said he should have a larger community than just the one that exists within his group home. 

People with disabilities can be so isolated. What I have always wanted for Gabe was for him to be a part of the community.

Lisa Peterson, mother of Gabe Raagas, a 32-year-old with Autism

“People with disabilities can be so isolated. What I have always wanted for Gabe was for him to be a part of the community,” said his mother, Lisa Peterson. “He should be able to experience different things and be able to interact with different people and be in groups.”

Without a day hab program, Devon Sutton’s social circle has also become smaller. In his group home, Devon lives with older women, making it difficult for him to form bonds with people his own age. At a day hab, he could choose who he wanted to sit next to and connect with his peers, his mother said. Now, for the most part, he only interacts with his family and caregiver. Besides a few scheduled activities, Devon spends much of his time in his group home listening to songs like “Wheels on the Bus” on his iPad.    

In the absence of a structured program, it seems iPads have come to replace day hab for many people with disabilities. For 28-year-old Auddie Abele, “the world is just his iPad,” said his mother, Gwen Abele. 

Since the pandemic, Auddie has been unable to return to his day hab program and has regressed academically. In day hab, Auddie practiced the alphabet and sounding out words. Today, there’s no one to challenge him. “I’m really worried,” Gwen said. “Now that he’s regressed so far, is the interest [to learn] still going to be there, or is he stuck in this little Microsoft world?”

The loss of community and friendships—coupled with increased time on iPads for some—contributes to a decline in mental health. ADDP reported in 2020 that without a day hab placement, disabled people experienced increased behavioral issues, such as aggression and yelling. Others were confused, lethargic, and had increased anxiety. 

In 2022, my Aunt Lauren began to cry more often and slept during the day. Without her program, she didn’t get enough stimulation throughout the day and began showing depressive symptoms. For the first time in her life, Lauren began taking an antidepressant.

Tana Jenkins has also noticed a difference in Juannay. According to Tana, Juannay now slouches in her wheelchair and doesn’t bother to pull herself up. She has also begun to put her feet up on the wall when she’s lying in bed as if to say, “Don’t talk to me,” Tana explained. It’s as if Juannay has lost some of her defiant spirit, Tana said. 

Struggling families 

The loss of day hab also has a serious effect on families. Some parents and guardians must reduce their job hours or quit work altogether to provide for their loved ones. Monitoring Devon’s care can feel like a full-time job, said Kelly, who is a single mother and works full-time.

Meanwhile, Tana and her husband switch off caring for Juannay, and on Saturdays, various family members visit Tana’s household to help with chores, cook, and spend time with Juannay. “We all come together and make sure that we have a day with her and the family around,” Tana said.

For Tana and the larger Jenkins family, this is their new normal. After about five years without a program, Tana has lost trust in the system and no longer wants Juannay to return to a program. Her niece has cerebral palsy and an ostomy bag, and Tana worried that a provider wouldn’t be equipped to provide Juannay with the complex care that she needs. “The pay is low, it’s strenuous, the hours are long and grueling,” Tana said. “Why would I send her knowing she might not get the best treatment?”

As families continue to adjust to life without day hab, advocating for change feels nearly impossible. “You’ve got so many families that are gulping for air. By the time you get to advocating, it’s exhausting,” Kelly said.

But the families who spoke to Prism all agreed that something needs to change. Otherwise, the state will continue to leave behind a population that’s already “misunderstood and overlooked,” Gwen Abele explained.

Disabled people need to be seen as a priority, advocates say. “We must prioritize the needs of people with disabilities and the workforce that supports them. We need to care more and do more to uplift this community,” said Sullivan of The Arc of Massachusetts. “People have to start recognizing the value of people with disabilities and neurodiversity in our state.”

Editorial Team:
Tina Vasquez, Lead Editor
Carolyn Copeland, Top Editor
Rashmee Kumar, Copy Editor