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Rafe's story 'is not unique': Lost in RI's broken mental health system

Providence Journal - 4/23/2021

NORTH PROVIDENCE — During his years attending the University of California San Diego in the 1980s, Raphael Leon Sweeney was known for his creativity and kindness. Rafe, as he likes to be called, was a good son and a friend to many, a musician and an accomplished guitarist.

Then he began to experience the first symptoms of mental illness, and in the spring of 1990 he was hospitalized following multiple suicide attempts. Originally interested in studying political science, the young man would manage to graduate from the university with a degree in philosophy.

But since then, Rafe, 53, has lived with bipolar and schizoaffective disorder, a difficult journey compounded by profound failures in the system charged with caring for him and many others who live with mental illness.

For Rafe, the early years were turbulent. From 1990 to 1992, he was repeatedly rehospitalized in San Diego. He made multiple suicide attempts. He struggled to accept his illness and the medications that can treat it. Afraid her son would not survive, his mother brought him to Newport, where she was living. He became a client of a community mental health center, and for a few years he was independent and stable.

This was the mid- to late 1990s, when Rhode Island had ended decades of gross abuse of people living with mental illness and developmental and intellectual disabilities by closing state institutions and creating a system of community care that was held to be a national model. Legislators, activists and citizens supported the money and policies needed for the community programs and living arrangements that were the foundation of that system.

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Years passed. Support faded. Money became scarce. Legislators and governors lost interest. The state agency that had created and overseen the system, the Department of Behavioral Healthcare, Disabilities and Hospitals, or BHDDH, languished. A model system deteriorated into crisis.

Warnings of the ultimate cost — in increased human suffering, incarceration, homelessness, the toll on relatives, and more — went unheeded.

Rafe was among the many who paid the price — and are paying it still, as BHDDH remains in turmoil, its latest director having recently resigned and Gov. Dan McKee having assigned state Health and Human Services Secretary Womazetta Jones to be interim director. McKee also has paused to a controversial plan to downsize Eleanor Slater Hospital, run by BHDDH.

Beginning in 2012, this man who had his own apartment, a job at Naval Base Newport and a dog named Charlie began to cycle through several hospitals in Rhode Island. He frequently visited emergency rooms. He attempted suicide twice. In 2016, after a brief period of stability, he crashed his truck on the Pell Bridge in what may have been a suicide attempt.

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That year, while a Butler Hospital inpatient, he blinded himself with his fingers during a moment of crisis. What followed was a succession of stays at an out-of-state hospital and hospitals in Rhode Island. Since 2016, he has been hospitalized, permanently sightless and having little contact with the outside world, for more than 1,300 days, almost four years.

The last stay has been at Our Lady of Fatima Hospital, where he was admitted on Oct. 23, 2019, and where he contracted and recovered from COVID in 2020.

A hope to help others

This is Rafe’s story, told by him and his relatives, and with the help of records and notes the family has carefully kept — and which his younger sister, Kara Sweeney Guerriero, president of INCITE Consulting Solutions, a health-care firm in Charlotte, North Carolina, shared with The Journal. Guerriero holds power of attorney and health care power of attorney for her brother.

Rafe and his relatives shared their long journey, Guerriero said, “recognizing unfortunately that his story, the years languishing in restrictive environments, is not unique, in the hope that the lessons therein might help bring reform and a better life for some of Rhode Island’s most vulnerable and least powerful people, people who remain stigmatized and marginalized.

“As the state considers how to rebuild the social safety net, monies spent in such high-cost settings could be better spent providing supports and resources in the community, but the will to effect change must come from leadership at the highest levels to commit to and make change happen.”

Dreams of 'a wife and a normal family'

On Wednesday, Rafe spoke with The Journal from inside Fatima Hospital.

He talked of his life ambitions before the onset of his illness and of his decades-long course through hospitals and programs. He described the importance of the Catholic faith that has helped sustain him, and he looked to the future, when he intends to use his experiences to help others. A transfer to a group home may finally be on the horizon.

Recalling his university years, Rafe said, “My first serious plans were to be a philosophy professor. After I left the fraternity lifestyle, I became an intellectual and I enjoyed studying political theory and philosophy for a while. But I discovered that philosophy, human philosophy, couldn't bring me to the truth. So I quit and I started to study law.”

Rafe spoke of his religious beliefs, saying, “I live by faith instead of eyesight. I have faith that I'll get out of this institution and I'll have a good life. God gives me the faith. It's a gift, and so I can be firm in hope, and that makes me strong. I can be miserable and joyful at the same time.

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“It used to be I wasn't able to do that and I was thrown back and forth like a little boat in the waves. But really, really in the last 13 months my life has changed. I stopped trying to please God and I just lay down in bed and thought and prayed while he took away my fears, my shames and my doubts. Now, I'm healthier than I ever have been in my entire life.”

Looking to the day when he will live in the community again, Rafe said, “My ideal situation would be to have a wife and a normal family.”

And to work in a capacity where he will be able to help others.

Cycling through hospitals

Since his admission to Butler Hospital on Nov. 23, 2016, Rafe has had inpatient stays there, at Rhode Island Hospital and at Silver Hill Hospital in New Canaan, Connecticut, as well a few weeks at the Bella Villa Assisted Living facility in East Providence. During this time, he has not lived anywhere else.

Medicaid and Medicare have paid for his care. But had proper community living arrangements and programs been available, not only would he be in a better place but the savings to taxpayers would have been significant. Inpatient hospital rates are higher than community-based services.

Confidentiality provisions of the 1996 Health Insurance Portability and Accountability Act, commonly known as HIPAA, prohibit hospitals and health-care providers from releasing records or commenting on patients’ treatment. Butler Hospital could not provide details of Rafe's blinding.

But the “Inpatient Program Frequently Asked Questions” page on the Butler website states: “Safety is our priority. To assist you in staying safe, the unit uses a checks system in which a staff member checks on you frequently throughout the day. Staff also ensure that the environment is safe through frequent unit safety checks. Staff are always available to talk about any safety concerns you have."

Clamoring for an overhaul

With a new governor in office and a new interim director of BHDDH, advocates say now is the time for change.

“It is critically important that Rhode Island address the behavioral health continuum of care,” state Sen. Louis P. DiPalma, long a champion of behavioral-health issues, told The Journal. “The community has been clamoring for this for many, many years. While progress has been made, we have significant work ahead of us.

“Investment, both one-time and operational, is needed to realize this vision. Front and center are the establishment and scaling of evidence-based programs in the community, which typically cost less than having individuals reside in congregate care settings.”

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He added: “I’ll be working to seeing how we can leverage investments from the American Rescue Plan to address this continuum of care, specifically the establishment and scaling of evidence-based programs,” those proven to work.

Leading advocate James McNulty, head of Oasis Wellness & Recovery Center in Providence, happens to know Rafe and members of his family. He said: “There are just not enough levels of care in the Rhode Island mental health care system, either at the state hospital level or in the community mental health system.

“I cannot believe that the state of Rhode Island cannot summon the expertise and the money to place one person who is blind and lives with serious mental illness in a residence where he will be safe. Doing this will be a hell of a lot cheaper than keeping him locked up in the long-term unit at Fatima.”

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Although BHDDH is currently working to transition Rafe to a group home, he has not moved yet.

McNulty closed with references to Slater Hospital and the debacle surrounding UHIP, the state’s $617-million public-assistance computer system.

“Unfortunately, it seems like the political decision has been made to apply short-term fixes, bringing in consultants to give us answers like UHIP and closing down Eleanor Slater Hospital without considering the downstream consequences on real, live human beings,” McNulty said.

Comprehensive plan needed

In an email to The Journal, Mental Health Advocate Megan N. Clingham cited a passage from Rhode Island’s Mental Health Law that requires that “Any person who is a patient in a [psychiatric] facility shall have a right to receive the care and treatment that is necessary for and appropriate to the condition for which he or she was admitted and from which he or she can reasonably be expected to benefit.”

The law also, she wrote, “requires that persons receive treatment in the least restrictive setting where their treatment needs can be met.”

By these measures, the state has failed Rafe Sweeney and many others.

“The system of care as it exists currently is not equipped to provide people with the individualized treatment they need, either in the community or in some cases long term residential treatment,” Clingham wrote. “As advocates have been pointing out for years, Rhode Island needs a comprehensive state plan to develop and maintain a full continuum of care that meets people’s needs.

“It is my hope that with the infusion of [federal COVID relief] funding Rhode Island will now be able to invest smartly in the development and maintenance of a robust system of care that encompasses the full range of services needed to allow people to live safely and productively in the least restrictive and most appropriate setting individualized to each person’s unique needs.”

From patient to peer counselor?

Rafe ended his phone interview with The Journal on an optimistic and inspirational note.

When he returns to the community, he hopes to become a peer recovery specialist, sharing his history and lessons learned with others who have been in similar circumstances with the aim of helping them.

“I'm something of a teacher, you know, because I teach by way of my experiences,” he said. “I'll tell people about myself so that others can understand what they're going through.”

And he intends to teach with the written word.

“It's not bragging, but I'm an exceptional writer,” Rafe said.

His sister, Kara Sweeney Guerriero, affirmed her commitment to help improve the treatment and care of people who live with mental illness.

“I’m spending the next 30 years of my life doing whatever I can to fix this,” she said. “Rafe is a really sweet, generous and kind man. If the pain that he has gone through can effect positive change for others, then it is worthwhile.”

This article originally appeared on The Providence Journal: Rafe's story 'is not unique': Lost in RI's broken mental health system

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