Disabled Massachusetts Residents Are Lacking Services

Tyler Bourne spends most days, hour after hour, hunched in a blue recliner in his mother’s living room, watching the reality TV show “Wicked Tuna” or crinkling up free magazines from Stop & Shop. He overheats easily. This time of year, the 37-year-old won’t leave the house for days, even weeks at a time.

His life was not always so monotonous. Bourne, who has a rare chromosomal disorder that caused significant developmental disabilities attended a day habilitation program, or day hab, in Mashpee for roughly 12 years, five days a week, six hours a day. However, he has been permitted to return only on rare occasions over the last three years.

The consequences for families are devastating. Bourne’s mother, Betsy Bourne, is among the many caregivers who have sacrificed and even left 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 has declined so much that his mother can’t get him into her car.

Bourne is one of over 2,000 people, the majority of whom have significant medical or behavioral needs who have been taken out of day programs since the outbreak began and are now on waiting lists for a service that is far more than just day programs. The programs include skilled nursing, physical therapy, speech therapy, group outings, and socialization opportunities.

However, according to state authorities and providers, they are currently so understaffed that some are finding it impossible to offer one-on-one care to everyone who requires it.

Advocates say the state is legally obligated to do better. They pointed out that the state’s 151-day rehabilitation programs are a Medicaid service. Therefore they must be available to anybody who qualifies.

Devon Sutton, another former Day hab client, has become less skilled at utilizing a communication device, according to his mother, Kelly Sutton,, of Natick, the 27-year-old, who has cerebral palsy, attended a program in Hudson that combined with another in Billerica right before the epidemic. That was too far away for him to attend, and no other organizations in the area could offer him the one-on-one attention he required.

He’s also grown less mobile, according to his mother Kelly, which has resulted in a cascade of difficulties. More time in a wheelchair can lead to constipation.

Constipation is characterized by irregular bowel movements or trouble passing stools. Constipation can be characterized as primary or secondary, and primary constipation can be further subdivided into slow transit constipation or outlet obstruction. The diagnostic workup includes focused lab testing and structural evaluation, followed by a therapeutic trial of fiber and laxatives, and ultimately, specialized tests. Treatment can include dietary changes, medications, physical therapy, and, in severe situations, surgery.

According to Joe Krajewski, the company’s chief operating officer, Community Connections Inc., which runs the Mashpee program Bourne used to attend, has twice recruited someone to work with him since the pandemic. MassHealth pays providers to hire specifically trained workers to deliver one-on-one care to those in need.

Bourne returned each time, but “unfortunately, neither one ended up staying for a significant amount of time,” Krajewski added.

According to Dunn Stanisz of the Disability Law Center, day hab reimbursement rates generally fall behind other programs for people with developmental impairments who, in certain situations, require less help.

According to Attaliades, day hab direct care employees earned between $16 and $18 per hour at the start of this year. According to her, poor staffing leads to more exits.

Meanwhile, many stressed and underpaid healthcare workers learned they could earn more in less stressful businesses. According to a Globe examination of census data, Massachusetts lost more than 10,000 people in healthcare support jobs, which include home health and personal care aides, between 2019 and 2021. According to Ellen Attaliades, chief executive of the Association of Developmental Disabilities Providers., staffing levels in her organization were typically 80 percent of pre-pandemic levels.

The same staffing issues that keep day programs understaffed also make it more difficult for families to function without day habilitation services.

Betsy Bourne refuses to place her son in a group home because she believes he would not receive the same amount of care that she does. MassHealth would cover home health care, but she can’t find someone ready to work at Medicaid rates.

She is alone except for three hours of care on Saturdays and Sundays. She is on Social Security. Unfortunately, she has been unable to leave the house for anything other than errands since lunch with a friend in June.

Devon Sutton used to be able to receive all of his physical and speech therapy services in one location, but his mother now has to find providers and coordinate their services on her own. He only receives physical therapy once a week, which is less than he had at day hab, and his mother is having difficulty finding a speech pathologist who is licensed to work with him.

Across the state, disabled people aren’t receiving services. Donnie Duggan of Haverhill, MA, used to attend a day program. The program reopened following a closure caused by the COVID-19 pandemic, but Duggan has been unable to return. The program lacks the necessary staff to support him.

In 2001, Duggan was in a terrible car accident that left him paralyzed on his left side. Due to his disabilities, and size, Duggan frequently requires at least two people to help transfer him. Dugan also needs assistance with activities of daily living.

Disabled people across Massachusetts need access to home and community-based services. Unfortunately, low pay keeps many people from taking these jobs, which means disabled people are often stuck at home.


Jani, Bhairvi, and Elizabeth Marsicano. “Constipation: Evaluation and Management.” Missouri medicine vol. 115,3 (2018): 236-240.

Laughlin, Jason. “Thousands with Complicated Disabilities Languish as Massachusetts Struggles with Staff Shortages at Care Programs” The Boston Globe, 9 Aug. 2023, http://www.bostonglobe.com/2023/08/08/metro/masshealth-disability-care-massachusetts-intellectual-developmental/.

LeMoult, Craig. “Thousands of Adults with Intellectual and Developmental Disabilities Have Lost Access to Day Programs in Mass..” WGBH, 27 Apr. 2023, https://www.wgbh.org/news/local-news/2023/04/27/thousands-of-adults-with-intellectual-and-developmental-disabilities-have-lost-access-to-day-programs-in-mass.

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