By Gina Macris
She was so excited about the prospect of attending a carnival on Easton’s Beach in Newport that she could not sleep, but hers was no ordinary insomnia.
The young woman, in the care of the James L. Maher Center of Newport, a developmental disability service agency, has a complex array of challenges on the autism spectrum and a rare chromosomal disorder.
Taken together, they give her a propensity for getting “stuck” on a single idea, unable to shift gears unless someone intervenes with a distraction in a light-hearted way. If her fixation goes uninterrupted, she can dissolve into a swirl of frustration, fear and anger.
That’s exactly what happened early on the morning of May 3. Police dispatched a cruiser to the group home where she lived, at 228 Carroll Ave., for a report of an “out of control 24-year-old female.”
She was taken away in the back of the police car to the emergency room of Newport Hospital. The Maher Center abandoned her there, “effectively leaving her homeless,” according to a recently concluded investigation by Rhode Island’s developmental disability agency.
As a result of 16 adverse findings connected with the woman’s care, the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) recently downgraded the Maher Center’s license to “conditional,” putting the agency under heightened oversight for a six-month probationary period, according to Jennifer Wood. The decision was conveyed to the agency in a letter dated Sept. 14.
Jennifer Wood, Rhode Island’s Deputy Secretary of Health and Human Services, says BHDDH will conduct another evaluation in six months to determine whether the full license should be restored, continued for another six-month probationary period, or terminated.
William Maraziti, CEO of the Maher Center, said by telephone that the agency disagrees with most of the findings in the BHDDH investigation but declined substantive comment.
The Maher Center, which serves about 300 families in Newport and Bristol Counties, has appealed the decision. The state’s heightened monitoring of the agency will continue during the appeal, according to a spokeswoman for Wood.
May 3 marked the sixth time in the previous nine months that the young woman had been taken to the hospital for behavioral issues.
After the third hospitalization, at the end of October, 2015, the Maher Center gave notice that it wanted to terminate services. However, the agency had an obligation to work with the client indefinitely until a new provider could be found, according to state regulations.
The woman, now 25, is the daughter of Steven and Jo-Ann DiBiasio of Cranston. She is one of three girls the couple originally took in as foster children and later adopted. The DiBiasios asked that their daughter not be identified by name to protect her privacy.
In what Steven DiBiasio describes as the “tsunami” that occurred May 3, he and his wife learned that police had taken their daughter to the emergency room during a surprise call from a hospital official, who had been trying to reach the group home and had dialed their Cranston telephone number by accident.
He said he and his wife dropped everything and drove to Newport. DiBiasio said he learned that no one from the group home had accompanied his daughter to the hospital. Later, he said, he received a call from a Maher Center employee, who said the group home would not take his daughter back.
Nor did she have the favorite things that brought her comfort, including a Minnie Mouse doll she asked for repeatedly while the family waited at the hospital for a 2 p.m. appointment with the young woman’s psychiatrist, DiBiasio said.
Before the family left Newport that day, DiBiasio said he picked up his daughter's Minnie Mouse and a few of her other belongings at the Maher Center’s administrative offices on Hillside Avenue.
He said he saw her bags on the floor in an office and picked them up. but a Maher Center employee also grabbed them. Maraziti, the Maher Center executive director, came out of his office and asked the employee to let go, according to DiBiasio.
Maraziti also called police to report an assault by the “parent of former client,” but police brought no charges, according to the police report.
The DiBiasios took her home to Cranston, where she has lived ever since. The first night she was home, she slept in her parents’ bed, clinging to her mother, something she had never done.
After she returned to Cranston, her daughter was aggressive, a tendancy that was not apparent before she went to live in the Newport group home in the summer of 2014, Jo-Ann DiBiasio said.
Chronic sleep deprivation has once again become a way of life for the DiBiasios, both of whom have health problems that make it difficult for them to keep up physically with a young adult who needs constant supervision.
For the first two months, the young woman received no developmental disability services. Jo-Ann DiBiasio took an unpaid leave from her job during that time to make up for the lack of support and to put extra effort into behavior management techniques to decrease her daughter’s anxiety and anger.
In July, the young woman started getting daytime support services from a new agency, DiBiasio said, but there are no residential prospects on the horizon.
The investigatory arm of BHDDH started looking into the case the day after the woman’s parents took her home from Newport Hospital, when the quality improvement unit received a complaint of a human rights violation.
The investigators’ report was signed by Eileen Marino, Associate Administrator of the Office of Quality Improvement.
The findings demonstrated that the Maher Center is “not reliably following the rules and regulations” of the Division of Developmental Disabilities, Wood said.
Even though the case involves the experience of just one client, the investigation raises “systemic issues” about the quality of care and respect for human rights, Wood said.
Another woman who lives at the same group home told BHDDH investigators that staff “put her down,” that an employee yelled at her in front of housemates, and that no action was taken when she told the house manager about the incident.
In the case of the DiBiasios’ daughter, the investigators found that the group home staff failed to follow proper de-escalation techniques spelled out in a 14-page behavioral support plan – a script of strategies intended to help the young woman keep herself on an even emotional keel.
The staff also failed to follow proper procedures for administering medication on an "as needed" basis, according to the findings.
If the behavioral and medication procedures had been followed, the investigators concluded, the ensuing incident might have been avoided.
According to the BHDDH findings, the staff of the group home simply told the young woman to go back to bed when she became agitated in the middle of the night.
In the next few hours, she was given an anti-depressant and she also was restrained, according to the BHDDH report. It said the group home staff called 911 at 7:37 a.m. The findings did not say whether or not the restraint was warranted, but investigators did say it was not properly recorded.
The investigators found numerous violations of state regulations, some of them procedural, such as:
• The Maher Center failed to provide the reason for its decision to cut off services to the young woman.
• The agency failed to provide the young woman and family with information about their right to appeal the decision.
• The Maher Center failed to work with the client and family to keep services going on an ad-hoc basis until a new provider could be found, so that there would be no interruption of services.
• The Maher Center failed to respond to an investigator's request for a copy of its policy regarding situations in which clients are taken to the hospital.
The DiBiasios’ struggle to find 24-hour support for their daughter played out during a long-running fiscal drought in developmental disability services that continues today, despite an $11-million-increase in the current budget for daytime programs.
In July, 2012, the young woman marked her 21st birthday and the end of high school special education. She experienced a “tremendous drop” in the frequency and variety of activities through adult services available from BHDDH and she became severely depressed, Steven DiBiasio said.
Six months later, in December, she dialed 911 herself and ended up at Butler Hospital.
All her caregivers at the time concurred that she needed 24-hour care, according to DiBiasio.
In March, 2013, officials identified the Carroll Avenue home in Newport, located just a few steps from the fabled Ocean Drive. But it was more than a year and a half, on Aug. 1, 2014, before the young woman was able to move in.
In all that time not one other agency operating group homes in Rhode Island offered to take the DiBiasios’ daughter.
Some providers are known for their expertise in autism, but almost all agencies in Rhode Island have closed their doors to new clients, saying they operate at a loss for each staff member they must hire.
The issue of the providers' capacity to take on new clients surfaced briefly, without reference to any particular family, at a recent statewide meeting of community-based organizations focused on developmental disability services.
Donna Martin, executive director of the Community Provider Network of Rhode Island , said “a lot of organizations are saying they don’t have the capacity to provide community-based services.”
“A lot of people are conflicted” between a desire to serve the needs of the newcomers and “the commitment to people they’ve had for many years,” she said.
CPNRI has 23 member agencies which serve about 3500 individuals, most of the adult population with developmental disabilities in Rhode Island.
Before their daughter went to live in the group home at 228 Carroll Ave., the DiBiasios said, they were told the Maher Center planned to develop an expertise in serving individuals with autism, and that their daughter would be the first client in that new program.
While the young woman had been waiting to move to Newport, her parents took her out frequently to movies, bowling, restaurants, and other activities which she enjoyed.With support, she became a volunteer “play partner” at the children’s play and exploration area of Roger Williams Park Zoo, Steven DiBiasio said.
The DiBiasios said they told the Maher Center that they wanted the visits to the zoo to continue, along with other community-based daytime activities.
When they were told that transportation from Newport to the zoo in Providence might be an issue, Steven DiBiasio donated a 2004 Toyota Corolla to the Maher Center so that the transportation barrier would be removed. BHDDH has ordered the car to be returned to the DiBiasios.
Both Jo-Ann and Steven DiBiasio said they fervently wanted the placement to work.
Within six months after their daughter moved to Newport, the DiBiasios say, they were informed that the Maher Center had abandoned plans for the autism program.
BHDDH authorized funding for two staff members to devote their full attention to the young woman, beginning in October, 2015, but investigators found the Maher Center did not utilize the money.
Steven DiBiasio said his daughter spent most of her daytime hours in the Maher Center’s day program and the rest of her time at the group home, largely shut off from the sights that had attracted her to Newport in the first place.
DiBiasio said the visits to the zoo were far and few between and eventually stopped, for reasons he was told ranged from“lack of adequately trained staff to the client’s unsafe behavior,” according to a letter of complaint he sent former BHDDH Director Maria Montanaro in late April, about a week before the incident on May 3.
Investigators faulted the Maher Center for failing to provide adequate staffing, “resulting in her inability to access the community,” including the zoo, as outlined in her individual support plan.These plans form the bedrock of supports tailored to individualized state funding.
BHDDH also said the agency failed to adequately communicate with the parents, who are the woman’s guardians.
Over time, the DiBiasios became concerned about the amount of prescribed medication administered to their daughter, particularly in light of her genetic disorder, a duplication of chromosome 15, which can make it difficult for her liver to tolerate too many drugs.
In March, 2016, Jo-Ann DiBiasio wrote the Maher Center nurse, saying that her daughter “is no longer able to talk to me on the phone
the way she had in the past. She is constantly yawning and obsessing” about the things she used to do with her family, the mother wrote.
When she asked her daughter about her day, the young woman replied that she didn’t like the prescription medication she was given on an “as-needed” basis.
The mother asked the nurse for complete information on the times and doses of the medications since December, 2015, when a psychiatrist authorized their use on an as-needed basis.
The agency responded to the email but did not answer the questions, according to investigators. As a guardian, Jo-Ann DiBiasio has a legal right to her daughter’s medical records.
Today, the young woman takes less medication on a daily basis than she did when she was living at the Maher Center group home, Steven DiBiasio said. In the four months since she moved back into her parents' home, she has had no emergency visits to the hospital, he said.
For ninety minutes twice each week, accompanied by support staff, she volunteers at a child care center. There have been no incidents, he said.
On a recent Saturday in Cranston, the DiBiasios’ daughter took a visitor by the hand into her house and offered a seat, as if she were leading a a guided tour. She asked her guest a number of questions about herself and her car, and inspected the newcomer’s car keys.
The questions allow her to process information in a way that decreases anxiety, Steven DiBiasio explained.
At the kitchen table, the young woman played with a laminated word-and-picture puzzle that had her distinguish the difference between a question and a statement.
The laminated poster board was fixed with velcro to receive one punctuation mark or another to complete a particular sentence. It is just one of the materials Jo-Ann DiBiasio has created to help her daughter with communication.
When she needed to move on to something else, her parents and two sisters helped her find a new activity, while one of the family dogs followed and the cat lounged on a high perch, taking it all in.
After a while, the young woman, who has perfect pitch, gave a brief demonstration of her skills on the piano and guitar.
When the talk turned to Newport, she said she still misses the excitement of the City-By-The-Sea.
(An earlier version of this article incorrectly said that DiBiasio retrieved none of his daughter's belongings from the administrative offices of the Maher Center on May 3.)