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.
