COFAR blog

When Janice Marinella first saw the Wrentham Developmental Center campus a few months ago, she had misgivings about whether it was the right place for her 34-year-old son Jeremy.

The red brick buildings on the sprawling rural campus are old, and some looked run-down. At the same time, though, she felt Wrentham was the last chance for Jeremy. He had been living in her home for the previous five years after his last group home closed unexpectedly.

In each of the three successive group homes in which he had lived, he had been either neglected or injured, Janice said.

Janice had to leave her career of 30 years in dentistry to care for her son at home. At first, it seemed like the right decision. But after five years, she felt she couldn’t continue to keep him at home due to the high level of care required. Yet she couldn’t find another safe or suitable residential placement for him.

“I felt that my own health and age were pressing down on me daily,” she said.

Janice Marinella and Jeremy.

But while the appearance of the buildings on the Wrentham campus made her decision to place her son there a difficult one, she soon came to reassess her initial reaction. She said she realized that what goes on inside the buildings at Wrentham is more important than how they look on the outside.

“I no longer see it (Wrentham) as institutional,” Janice said. “I now see the love and devotion the staff gives my son.” She added that even though the buildings are old, her son’s unit is “immaculate.

The hallways, the bathrooms are spotless,” she added. While many modern nursing homes smell of urine, she said, that isn’t true at Wrentham. “They really work hard to keep it clean.”

For Janice, the decision by the Department of Developmental Services (DDS) to admit Jeremy on September 20 to Wrentham has opened new and positive possibilities for both him and herself. It was a rare new admission to one of the two remaining developmental centers in the state.

“I’m so grateful that we have now found a real home for Jeremy,” Janice said. “My son deserves a home and family that will serve him after I am gone. This is the first time he has been treated with respect and dignity outside my care.”

Janice added that, “I see placing Jeremy here as an act of love for him. I want to love and support him through this transition, which I’ve made by choice and not due to an emergency.”

Welcomed by staff at Wrentham

Janice said placing Jeremy at Wrentham was “the hardest decision I’ve ever made. I had to learn how to trust again.”

She said the staff at Wrentham helped her to do that. “They were extremely welcoming,” she explained, adding that the staff appeared from the start to be trying their best to accommodate Jeremy’s needs.

And in what Janice said was a first for her, a member of the Wrentham staff told her that they saw “potential” in Jeremy. One member of the staff told her he was “honored” to be able to care for him.

“They have taken everything I express into consideration,” she said of the staff.

Facing a food and nutrition challenge

One of the first challenges the staff faced was to get Jeremy to adjust to the food at Wrentham. It has taken work and communication, Janice said, to ensure that Jeremy, who was used to her cooking, would continue to eat.

Jeremy, who weighed only 104 pounds when he arrived at Wrentham, and is 5-foot, three inches tall, needs to eat 3,000 to 4,000 calories a day, or he will lose weight, Janice said. He has a condition known as “failure to thrive,” which makes any weight loss dangerous to his health.

“The nutritionist, the social worker, the nurse – the whole team came down and talked to me,” she said. After two weeks at Wrentham, Jeremy’s weight actually went up, from 104 to 106 pounds.

Jeremy in his new room that the staff painted and Janice decorated, at the Wrentham Center.

Janice said when she told the staff that Jeremy does not generally engage in communal activities, but often likes to be by himself, the staff offered to make an unused room across the hall a sitting room available for him alone. He will be able to watch his TV set there.

The staff have been involved from the start, she noted, in making sure Jeremy has fulfilling activities. She said that during his first two weeks at Wrentham, they took him for walks, and took him in a van to an adult education program.

Jeremy also attended a fall festival on the campus, with lunch delivered outside. The staff provided Janice with a photo of Jeremy at the festival, holding a puppy on his lap. He will also attend the Center’s upcoming Halloween party.

“We are so excited to begin his swim program in the pool,” she added.

After a month of visiting Jeremy in his new home, Janice said she wants to work “to open the door to Wrentham to other parents.” Jeremy is apparently one of the first new placements at Wrentham in years. “I want to show others that this can work.”

“It’s such a blessing that they see potential in him,” she said.

Almost zero new placements at Wrentham in recent years

Developmental centers, also referred to as Intermediate Care Facilities for individuals with intellectual disabilities (ICF/IIDs), must meet more stringent federal requirements for care and conditions than do other residential facilities, such as group homes, in the DDS Home and Community Based Services (HCBS) system.

That has created a perception among policy makers that ICFs/IID are more expensive to operate than are group homes. However, it is not necessarily an accurate perception.

For the past several decades, ICFs/IID such as Wrentham and the Hogan Regional Center in Massachusetts have bucked a nationwide, ideological trend toward the closure of  congregate care facilities. Starting in 2008, the administration of then Governor Deval Patrick closed four of the six remaining developmental centers in Massachusetts.

Since Fiscal Year 2012, as the ICFs/IID have been closed, the developmental center line item in the Massachusetts budget has shrunk by $78 million, or 42%, while the privatized group home line item has risen by $563 million, to over $1.4 billion.

That increase in the corporate provider line item appears to belie the promise that closing the developmental centers would save state taxpayers tens of millions of dollars in caring for persons  with developmental disabilities.

As we reported last year, the Baker administration has largely declined to offer the Wrentham or Hogan Centers as options for people seeking residential placements in the DDS system in Massachusetts.

From 2018 to 2020, DDS documents state, the residential population or census at the Wrentham Center declined from 248 to 205, while admissions to the Center declined from only two in 2019, to zero in 2020.

The Patrick and Baker administrations and other opponents of ICFs/IID have also argued that the centers segregate clients from the wider community. But we have long maintained that that claim lacks evidence to support it.

The Wrentham Center, in fact, feels like a community, according to many family members and guardians of the residents there. The campus provides an array of centrally located services that cannot be found in any community-based group home in the commonwealth. Even so, Janice maintains the Wrentham Center doesn’t have an institutional feel to it. The campus has a mix of larger residential buildings and smaller, multi-bedroom homes.

Jeremy holds a puppy at the Wrentham Center fall festival.

Janice said that when she took Jeremy out for a walk on the campus on Tuesday (October 11), “I cannot even tell you how many folks said hello to us, slowed down and waved while passing, smiling, so happy to see us. I am overwhelmed by it. Every time I have gone to Jeremy’s unit, multiple people have come to say hello and discuss how Jeremy is doing and to express their happiness that he is in their care.”

Community-based system did not work for Jeremy

Prior to moving back home with Janice in 2017, Jeremy had lived in two provider–operated and then one state-operated group home. Janice said he was neglected and suffered serious injuries in those residences in a number of instances.

After Jeremy’s state-operated home in Dartmouth was suddenly closed in 2017, Janice decided he needed to live at home with her. She agreed at that time to voluntarily transfer her guardianship of her son to her ex-husband, Ed, so that she could be paid as her son’s caregiver. She said Ed was supportive of her efforts to care for Jeremy and, in the past year, to find a new placement for him.

But the search for a new placement was frustrating. Janice said she was continually told by DDS that there were no residential settings available in the Department’s New Bedford district, where she lives.

She said that after she contacted COFAR in March of this year, Colleen Lutkevich, COFAR’s former executive director, worked with DDS officials to arrange a tour of the Wrentham Center for her and Jeremy, and to gain approval for Jeremy’s admission there. Colleen’s sister Jean has lived at Wrentham for more than 60 years.

Wrentham needs to become a choice

Janice believes the Wrentham Center could and should become a residential option for more people with disabilities. She said she would be happy to talk with other family members or guardians about the facility.

“My son was warehoused in group homes,” she said. “At Wrentham, it’s about the staff and the opportunities. This is where he (Jeremy) was meant to be.”