COFAR blog

At her day program in the Liberty Tree Mall in Danvers, Mia Cappuccio spends lots of time either walking around the mall with other clients, isolated from the community, or engaging in computer games and a handful of other repetitive and mundane activities, according to her mother Jeanne.

Jeanne said Mia has told her she has asked many times to participate in job training and internships at Parcels, a boutique in the mall. Parcels is run by the Northeast Arc, a corporate provider to the Department of Developmental Services (DDS). Northeast Arc runs both Mia’s day program and her group home.

According to Jeanne, Mia says the day program director repeatedly responds to her requests to work at Parcels by saying she will “‘look into it,'” but nothing ever comes of it.

Since Mia began attending the day program in October 2021, the staff have allowed her, over Jeanne’s objections, to buy candy and lemonade at the Five Below store there. Jeanne thinks the combination of Mia’s sugar intake and lack of exercise at the day program may have contributed to her development of diabetes, which was diagnosed in October.

Yet, Jeanne says, neither Northeast Arc nor DDS, which funds the provider agency, appear to recognize the problem.

Jeanne said she has requested that the day program staff help Mia to make better food choices, and provide Mia with activities other than making purchases in mall stores. But, she said, the day program management have responded that while they encourage Mia to make good choices, it is Mia’s “human right” to buy what she wants.

Jeanne said the day program management suggested that the solution to the problem is to take Mia’s debit card away from her or to suspend her participation in the program altogether. Jeanne maintains that neither of those suggestions are constructive because neither would provide Mia with cues for appropriate behaviors or with usable skills.

Mia and Jeanne Cappuccio

Mia’s day program is called STEP ( Skills Training Exploration Program), and is described on the Northeast Arc website as helping participants “build work and life skills.” But, Jeanne said, little or no such skill-or-work-related training is being provided to Mia in the program.

Mia, who is 26, has a moderate intellectual disability. She has lived in three group homes run by three different DDS providers; but Jeanne said that none of those settings have met her needs as required by DDS regulations.

We are hearing more and more from families and guardians that the COVID pandemic hastened a decline in overall care and services in the DDS community-based system. The decline has been marked by an ongoing staffing shortage. But Jeanne maintains the staffing shortage doesn’t fully explain the lack of meaningful activities provided by Mia’s day program.

Jeanne said Northeast Arc frequently extols its programs on social media and in podcasts. Recently, a Northeast Arc executive contended on a corporate podcast that the organization has helped more people with disabilities secure employment during the pandemic than in any previous year. “As I listen or read these things, I wonder – who does this apply to? Why isn’t this Mia’s reality?” Jeanne wrote to us.

Declining health

Jeanne said Mia’s mental and physical health have declined in the past several months. In addition to diabetes, Mia was diagnosed earlier this year with metabolic syndrome, a condition that can increase the risk of heart disease and stroke. She also developed fatty liver disease a year ago as well as narcolepsy.

Jeanne said Northeast Arc recently developed a behavior plan to address these issues; but she termed the plan “weak,” and said the staff are “woefully undertrained.” Also, she said, the plan has been implemented in Mia’s group home, but not at her day program.

Seeking self-directed model and requesting a change in placement 

Earlier this year, Jeanne asked DDS officials whether the Department’s “self-directed services” model might work better for Mia than the traditional model of care under which DDS directly funds corporate providers to provide residential and day program services. Although DDS has been operating self-directed services programs since the late 1990s, the state Legislature authorized a major expansion of those programs in 2014 with passage of the “Real Lives” law.

Jeanne said provider and DDS officials met with her to discuss her self-directed services proposal, and recommended for the first time last month that she explore a shared-living arrangement for Mia. Jeanne said they told her the self-directed model could be made to work with shared-living services.

Jeanne said she and her husband Tom have agreed to explore the shared-living model, although she said Mia has said she would like to remain in a group home. Under the shared-living proposal, Mia would live in a home near her parents. A shared-living setting is run by an individual provider.

Jeanne said she and Tom also asked to explore another group home placement for Mia, particularly one that is state-operated. As we have reported, staff in state-run group homes and Intermediate Care Facilities in Massachusetts are better paid and better trained than their counterparts in the corporate provider-run group home system.

Jeanne said the response from DDS, though, has been that they typically refer only medically complex and highly clinically or behaviorally challenged individuals to state-operated facilities, and that those settings would not be an appropriate peer match for Mia. She added that DDS has also claimed residential placements are scarce, and there are no other residential placements in the Cappuccios’ community.

We disagree that state-operated placements are only appropriate for a restricted set of clients. In any case, it appears that Mia’s medical needs have become more acute in the past year.

Lack of exercise and concern over diet

Jeanne said that in August, when Mia’s gastroenterologist diagnosed Mia with fatty liver disease, he recommended a half-hour-a-day exercise program for her, five days a week, and a low fat diet.

To date, Jeanne said, Mia has no regular exercise program either at her day program or in her group home. She said staff maintain that they encourage Mia to exercise and eat healthy foods, but that they contend she is a picky eater and she refuses exercise.

In September, with Mia’s health issues unaddressed, a sleep specialist at Mass Eye and Ear determined that Mia was experiencing excessive daytime sleepiness and that she might have narcolepsy, Jeanne said. In late October, her primary care doctor stated that Mia’s condition had shifted from prediabetic to diabetic. The doctor’s notes stated that Mia’s group home was working on diet and exercise programs for her; but Jeanne said the group home has not been doing that. 

Based on email correspondence between Jeanne and the day program staff, it doesn’t appear the staff have recognized the extent of Mia’s concerns. On November 4, a day program manager emailed Jeanne to say that Mia “has made a lot of progress and is doing really well. Mia has expressed on several occasions that she enjoys being in program and the activities that we provide.”

There was no acknowledgement in the program manager’s email of Mia’s health problems.

Three days later, Jeanne emailed the day program manager to say that medical lab results over the previous year had iindicated that there might be a correlation between Mia’s development of diabetes and her participation in the day program. In that email, Jeanne wrote that:

Mia has been purchasing candy, cookies and a liter of lemonade frequently at her day program. She has been experiencing fatigue and falling asleep often. It has been a vicious, unhealthy cycle. She needs support to manage her health, rather than her social behavior.

That same day, November 7, Jeanne brought the group home and day program situation to the attention of Kelly Lawless, the DDS northeast regional director. She wrote:

Direct care staff members have been quick to respond to correspondence and they appear to have good intentions.  However, her programming has not met Mia’s needs and has resulted in a decline in her health and wellness. Her programming has substantially contributed to her development of metabolic syndrome, including diabetes.

Northeast Arc official contends the day program provides activites and exercise

In an email on November 21 to both DDS Commissioner Jane Ryder and to Northeast Arc CEO Jo An Simons, I asked for a response to Jeanne’s concerns about Mia’s day program and her request for a new placement for her.

Timothy Brown, chief innovation and strategy officer at Northeast Arc, responded with an email, stating that Mia had started in a class at her day program called “Health Matters,” and that she had “consistently made healthy eating choices” due to the class, and had not purchased any candy since her diabetes diagnosis.

Brown also contended that Mia has participated in “structured classes and programming that focus on employment goals and is exploring specific internship opportunities that were identified during these classes where she expressed career interests.” He didn’t identify those goals, and didn’t respond to a follow-up email seeking specifics about the internship opportunities and classes.

Brown also maintained that Mia has had “ample opportunities for physical exercise during the day.” He said those activities incude walking “alongside community members each morning prior to the mall opening”; day trip opportunities outside of the mall, and options during inclement wealther for Zumba and aerobics. He also said Mia attends the YMCA at least two times per week with her housemates, and uses an exercise bike on days she chooses not to go to the Y.

Exercise claims disputed

Jeanne, however, said in late November that she determined, based on Mia’s debit card transactions, that Mia has continued to go to pizza and barbeque wings restaurants in the mall at least once a week, and has continued to eat candy and sugary foods. She also said Mia told her that the instructor for the Health Matters class had been out for weeks and was out indefinitely. One of two of the provider’s care staff were taking turns running the class, she said.

Jeanne added that Mia told her the other activities in the day program primarily consist of computer games such as Jeopardy, Wheel of Fortune, and a game she has repeatedly played called Spent. A reviewer described Spent as a “harsh and often bleak” simulation of a situation in which the players are facing poverty and must figure out how to survive for 30 days on their last $1,000. “It is not appropriate or relevant and I don’t think it is intended to be played repetitively,” Jeanne told us.

Jeanne also said that, based on her review of the YMCA records, Mia has been to the Y 34 times in the past 11 months, which averages out to just over three times a month.

I have not received a response from Ryder to my November 21 email seeking her comment on the situation.

In our view, it is cases like this one that indicate whether a state agency such as DDS is effective in its management and oversight of its provider-run programs. When a provider can’t seem to recognize that a client in its care is experiencing severe health problems as a result of the policies and practices of that agency, the evidence begins to mount that the system is broken.

We would join with Jeanne in urging DDS to find a new and successful placement for Mia, preferably in a state-run facility. Given that Mia’s health is declining, DDS can’t afford to let the situation continue any longer.