Rhode Island Needs Zambarano Hospital - Part 1

It opened up over a century ago on the shores of Lake Wallum. It has been cited repeatedly as one of the “most haunted places" in Rhode Island, sadly, the only thing many people know about this location. What we are talking about is Zambarano Hospital, and the reality is, it’s a place of miracles, not poltergeists.

Zambarano Hospital in Burrillville, RI

Since its founding, the hospital has saved countless lives, provided support and understanding to family members, and helped broken individuals become whole again. But today, Zambarano is fighting to save its own life as the current state house administration is planning to close it down.

“I'm always taken aback by the number of people I speak with who have no idea about the wonderful work that occurs at Zambarano Hospital," said Attorney RJ Connelly III, who has had many clients he provided services for at that location.

“Their only knowledge about the hospital is that it is the 'scary-looking place' in Burrillville. I always repeat the old axiom to them, never judge a book by its cover because in this case, you would be missing out on an amazing story with equally amazing people.” And it is indeed an amazing place as the history of this hospital on Wallum Lake is rich with life-changing stories and selfless caregivers that began with the scourge of tuberculosis (TB) some 150 years ago.

The history of Zambarano

In the late 1800s, TB was running rampant in the United States and the world (Note: Tuberculosis (TB) is caused by a bacterium called Mycobacterium tuberculosis, which not only attacks the lungs but other body parts as well). By 1900, health records indicated that the death rate for white Americans was somewhere around 200 per 100,000, and among black Americans, it was double that number, nearly 400 per 100,000 (far above the death rate of 156 per 100,000 for COVID [Statista: March 1, 2021]). It was clear that something needed to be done and that something was the sanitorium movement.

Zambarano Hospital, circa 1905

Sanatoriums began to appear throughout Europe in the mid-19th century, and in 1885, the first sanatorium in the United States opened in Saranac Lake, New York by an American Doctor, Edward Trudeau, who was afflicted with the disease.

Trudeau, who was dying from TB, retired to the Adirondack Mountains to live out his final days, but instead of succumbing to the malady, the fresh air resulted in many of his symptoms disappearing. He then decided to research the European approach to treatment through sanitoriums seeking to replicate that model with his New York facility. He further researched how TB responded to levels of activity in individuals, exposure to light and food, and of course exposure to fresh air.

Soon, the sanatorium movement took root, with ‘fresh-air” hospitals opening throughout the country, including Colorado, Massachusetts, Maryland, North Carolina, and Zambarano in Rhode Island. (a 2009 documentary “On the Lake: Life and Love in a Distant Place”, provides an in-depth look at life in an American sanatorium, which includes Zambarano Hospital - watch below).

Rhode Island medical officials, following the science of the time, accepting that the fresh air treatment was ethical and supported by research, built their own sanatorium on 250 acres of land located next to Wallum Lake. Despite the small size of Rhode Island, the institution was initially overwhelmed by patients seeking treatment, forcing superintendent Dr. Harry Lee Barnes to turn away nearly 200 people who he deemed to be beyond help.

Despite his attempt to keep the patient load to a minimum, Barnes was often criticized for overcrowding by citizens, the doctors who worked at the institution, and, of course, politicians. He was also criticized for refusing to allow fraternization among male and female patients, being accused of taking away the necessary socialization required by humans if they were to thrive in such a setting. But despite the critics, records indicated that the sanatorium was responsible for a major decrease in TB deaths in Rhode Island, mainly because those infected were removed from the general population.

As years passed, the sanatorium became even more self-sufficient, adding a nurse’s residence in the 1930s, an administration building, a kitchen, bakery, auditorium, chapel, and pharmacy. Additional buildings were added that included a store, slaughterhouse, hennery, barbershop, school, fire department, and even a post office. At one point, the hospital had its own postcards that facilitated patient communication with the outside world.

The Zambarano Postcard

As stated earlier, sanatoriums did little to impact the disease, except for the fact that sick people were removed from populated areas thereby reducing the spread. It wasn’t until the development of antibiotics in the 1940s that TB was brought under control. By that time, nearly a thousand sanatoriums had been opened in the United States and Europe.

By the 1950s, the use of antibiotics had had a dramatic impact on TB in the United States, dropping it to tenth place as a cause of death. By 1953, fewer than 20,000 people had died from the disease compared to 120,000 just 30 years before.

In 1955, the hospital began to admit patients with lung disorders not associated with TB, and around that same time, the sanatorium officially became Zambarano Hospital to honor its former superintendent, Dr. Ubaldo E. Zambarano. Things began to change quickly at Zambarano specific to the patients they accepted. By 1958, dozens of children with developmental disorders were admitted and in 1961, they began to accept general medical care patients.

By the 1970s, a new movement had begun in this country, the closing of large hospitals and institutions and returning individuals to the community, either through independent living, group homes, or smaller apartment settings with supportive services. This became known as the deinstitutionalization movement. Although the movement drastically reduced the population at Zambarano, it did manage to survive.

What Zambarano is today

According to the retired medical director of Zambarano, Dr. Normand L. Decelles, the hospital meets the needs of those who are not able to obtain at other medical facilities. In a letter of support in keeping the hospital open, Dr. Decelles describes what today’s patient profile is at Zambarano.

Zambarano patient Chris Burr in therapy (RI Public Radio)

“Zambarano’s census has declined to 85 individuals, average age upper 40s, with permanently life-altering medical and physical conditions such as traumatic brain injuries from gunshot wounds or accidents, spinal cord injury, neurodegenerative diseases such as end-stage multiple sclerosis and Huntington’s chorea, anorexic brain injury due to opioid overdoes, quadriplegia, dementia with aggressive or self-injurious behaviors, patients requiring inserted devices long-term (tracheostomy, nephrostomy, supra-pubic tubes, central and peripheral venous catheters, etc.) and more. Zambarano is also a referral/provider of advanced wound care for patients with debilitating pressure ulcers acquired in other facilities.”

And, wrote Dr. Decelles, “most patients do not have the physical or cognitive capacity to self-preserve or self-advocate.” This statement makes it even more concerning how the current hospital administration is handling the proposed closing.

“We shouldn’t even be talking about closing down Zambarano,” said Paul Jones, owner of the Care Concierge of New England, a senior referral and placement agency focused on helping seniors find the best assisted living or dementia support. On a recent edition of the Connelly Law Southcoast Seniors Radio Magazine heard on am790 WPRV in Providence, Jones offered unwavering support for the work done at the hospital.

Patient activities at Zambarano (RI Public Radio)

“We need more places like Zambarano in our state, not less," said Jones, "and if they continue to push this idea, I’ll be there with other advocates at the State House demanding to know why.”

“I have seen some of the most amazing care at Zambarano,” said RJ Connelly. “In all the years of practicing elder law and advocating for seniors and those with disabilities, I have never witnessed a more professional and thorough treatment plan development and review like the one that occurs at the hospital. The entire treatment team is there, the plan is projected on a screen for all to see and changes are discussed and made contemporaneously with no one leaving that meeting not understanding the direction of care for that patient.”

Connelly’s observations are echoed by the words of Dr. Decelles, “Zambarano’s success with many challenging patients can be attributed to an intensive individualized, multi-disciplinary, structured, holistic team approach that simply does not exist elsewhere.”

State denies closing attempts

But the state denied it was closing the facility. Before Governor Gina Raimondo left Rhode Island to take a position with the Biden Administration, a statement was released that did not calm the fears of patients or family members. It stated, "Governor Raimondo is committed to keeping Zambarano open. Last summer, the administration put forward a proposal to further invest in the campus and provide patients with the highest quality, most appropriate level of care. She hopes the General Assembly will move forward with these important investments in Zambarano."

Then came this, "the hospital is currently going through a required process of discharging patients who no longer require hospital-level care." But the question is, release them to where? And what appropriate settings exist in Rhode Island that will take these patients?

Meghan Clingham, the state’s Mental Health Advocate, responded to this statement by saying, "Bottom line, it appears that the plan is to close the facility of last resort for patients with severe persistent mental illness who are unable to remain safe and healthy in any community setting.’’ The proposed closure not only has deleterious effects for the patients and their families but for the community as well. Just how real is this concern? In late February, the city of Warwick experienced it.

The concerns become real

Consider the story of Aiyana Milton of Charlestown, RI. In a February 26, 2021 story in the Providence Journal entitled “The System Failed Her”, the reporters tell the story of Ms. Milton, “A 28-year-old woman has been charged with setting the fire at a Warwick apartment complex that displaced 60 residents two weeks ago. Aiyana Milton, of Old Post Road, Charlestown, was arraigned Thursday in District Court, Warwick, on a charge of first-degree arson, the Warwick police said in a news release. She was ordered held without bail.”

Warwick apartment fire was arson (WJAR)

The story continued. "In 2013, Milton was the focus of a Journal story about gaps in Rhode Island's system of care for severely mentally ill children, teenagers, and young adults. The story said that when Milton was 16, a psychiatrist determined that it was no longer safe for her to live at home due to her history of outbursts. The story said Milton was moved to an intensive residential treatment program in Massachusetts, and later to a group home in Providence. While in the group home, the story said, Milton racked up six emergency-room visits and 19 days in hospital psychiatric wards. Reached Friday afternoon, Milton's mother, Deborah Masland, said she feels terrible that so many families were left homeless by the Warwick apartment fire."

“It’s awful,” Masland said Friday, “just awful. But I feel like the system failed her. All of these people kept telling me there is nothing they could do for her. All of these psychiatric facilities are short-term. They couldn’t keep her.”

Milton, who is now 28, was diagnosed with schizoaffective disorder as a child. She recently spent seven years at the state-run Eleanor Slater Hospital. But, Masland said, the hospital let her out this summer, saying she was well enough to enter a group home. Masland said it’s because the hospital was trying to reduce its population. She did well at the group home for a couple of months and then began disappearing last winter, Masland said.

Since then, Milton has had several short-term admissions to various Rhode Island hospitals, none of which were designed to handle her long-term care, Masland said.

Masland reported her missing in early December. A month later, her daughter reached out and said she was living with someone in the Warwick apartment building.

"The system isn’t set up to take care of someone like her,” Masland said.

As a result of the fire, 35 families consisting of 49 adults and 11 children were sent fleeing into the 18-degree temperatures without appropriate clothing. Two residents suffered smoke inhalation and one was injured falling on the ice. But it could have been worse -- much worse.

Why close Zambarano now?

The rush to close appears to be the result of pressure from the Centers for Medicare and Medicaid Services (CMS) who issued the state a citation in 2019 about the state's lack of a computerized health information system/medical record(HIS/MR) for the facility resulting in the inability to get reimbursements from the federal government. And just how long was this electronic health record requirement in place? For that, we have to go all the way back to the beginning of the Obama Administration.

How will the State respond?

In 2009, the American Recovery and Reinvestment Act was signed into law, stating that all public and private healthcare providers and other eligible professionals were required to adopt and demonstrate “meaningful use” of electronic medical records (EMR) by January 1, 2014, in order to maintain their existing Medicaid and Medicare reimbursement levels. According to Dr. Decelles, the State of Rhode Island did not comply with this mandate.

In his letter to legislators, he described how this mismanagement is the impetus behind the discharge of patients, and not because they no longer required the level of care being provided.

"Now that ten years of CMS financial warnings to upgrade to a HIS/MR computer system have passed unheeded, such a system has finally become mandatory to receive Federal reimbursement for care. ESH (Eleanor Slater Hospital) is no longer positioned to receive Federal funds."

Dr. Decelles continued, "Administrative allegations that Zambarano patients need to leave now because they fail newly-developed hospital "criteria for admission" is disingenuous and fabricated. [The real] reason: Patients need to leave now because their entire cost is being borne solely by the State of Rhode Island, not because they belong in nursing homes. Regardless of which patients occupy Zambarano beds, Administration still could not receive Federal financial reimbursement for any of them."

"The famous Gandhi quote, 'the true measure of any society can be found in how it treats its most vulnerable members' comes to mind here," said Attorney Connelly. "Those in need of Zambarano Hospital and its dedicated and caring staff are among the most marginalized groups among us, so the question is, will those in charge step up to help them?"

Next week: The personal impact of closing Zambarano on patients and their families.

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