The Senate Oversight Committee in Rhode Island will be hearing the current status of the Eleanor Slater Hospital System on Monday, March 22nd (tonight) at 5:30pm. Attorney RJ Connelly III has just submitted his written testimony (the statehouse is still closed) for inclusion into the record. Below is the text of that testimony.
Dear Senator De La Cruz,
My name is RJ Connelly III, a certified elder law attorney licensed to practice in the states of Rhode Island, Connecticut, and the Commonwealth of Massachusetts. My main office is in Pawtucket, Rhode Island with satellite offices in Mystic, CT, and Oak Bluffs, MA.
As an elder law attorney, I handle a wide variety of legal matters affecting older adults and their families as well as those with disabilities. These include issues related to long-term care planning, estate planning, guardianships, probate, and Medicare/Medicaid assistance. My office often handles situations involving those with disabilities and because of this, I have regular contact with residents, their families, and those who provide the specialized care offered at Zambarano Hospital.
Let me start out by saying that the majority of Rhode Islanders have no idea of the treasure that they have in this facility located in the northwestern corner of the state. Many of those I encounter during the course of business “know of Zambarano” but few have any knowledge of the work that goes on there day in and day out.
In one respect, they are indeed blessed for never needing the remarkable services that the staff of Zambarano provides, yet in another, should such a tragedy befall them or a member of their family, this hospital of last resort for those who need this care in Rhode Island may be gone.
Zambarano provides care and offers unique rehabilitative services to individuals who suffer injuries and illnesses that cannot be accessed through other medical facilities. Most of the residents at Zambarano, if not for the services provided by the dedicated men and women who work there, would face a quality of life that would decline with every passing day due to the inability to access the specialized rehabilitation or other assistive technologies needed. The harsh truth of the matter is, these residents, in the absence of this hospital, would certainly become invisible and marginalized.
Throughout my decades of legal practice, I have provided services to multiple residents at Zambarano and witnessed changes in both census and services. It has been my experience that the type of patient handled by Zambarano today are those referred from other medical facilities with the majority not having the physical or cognitive capacity to self-preserve or advocate for their own needs.
Dr. Normand Decelles, Zambarano’s former medical director, describes today’s census at the hospital: “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.”
In an article written by Rhode Island’s long-term care ombudsman, Kathleen Heren, she shared her own history of working with the staff and patients at Zambarano Hospital and the importance of having this facility in place: “Over the years, the hospital has evolved into an outstanding rehabilitative center. The hospital has done remarkable work with head injuries, burns, large bedsores, and any neurological conditions that could not be handled in a nursing home. It has also been a place of last resort for residents who have had anywhere from 3-6 failed nursing home placements. I can attest to referring nursing home residents to the hospital that were in a very sad condition. When I returned to visit them, I was not able to recognize them."
Allow me now to introduce a current resident at Zambarano named Amy. Amy was diagnosed with a seizure disorder at a young age because of a bout with encephalitis that left a part of her brain damaged. Throughout her life, she received outpatient care with constant medication adjustments to control her clonic-tonic seizures as her brain matured.
In 2016, at the age of forty, she had a seizure in her apartment, fell to the floor, and stopped breathing. Her daughter contacted emergency services and the North Providence EMTs transported her to Fatima Hospital where she lay in a coma for months. She had a tracheostomy, feeding tube inserted, and central venous line in her neck. After medically stabilizing her, discussions were held about the most appropriate place to send her, which included a nursing home. Her treating physician at Fatima, however, was adamant that she be transferred to Eleanor Slater Hospital in Cranston where they had the type of rehabilitation she would need should she come out of her comatose state.
Amy eventually regained consciousness, but she had lost many of her gross and fine motor skills. Upon transfer to Eleanor Slater Hospital (ESH), braces were placed on her legs to prevent her joints from freezing and to maintain functionality. Her hands, clenched, and her fingers curling into themselves, the result of severe spasticity, were also splinted. Everything she had taken for granted over the past three decades of her life was gone. It was now up to the staff of the hospital to help her learn to live again.
A speech therapist taught her how to swallow and gave her memory techniques to improve her recollection of details. Her occupational therapist showed her how to navigate a room in a wheelchair, accompanied her into the shower to explain to her how to stay safe while bathing herself. This included remembering basic tasks such as using soap, shampoo, brushing her teeth. Her team of physical therapists helped her work on core strength for balance, strengthening her leg and other muscles required for standing and walking. This rehabilitation continues today.
I have submitted a video (see below) that Amy wanted me to supply to the committee so everyone can see how far she has come since her acquired brain injury in 2016. Although she still is unable to walk without the assistance of a walker or without staff support, it is her goal to walk again one day on her own. This case alone is a testament to the miraculous work done by the staff at Zambarano and why it needs to remain open and there are hundreds of individual stories like this in Rhode Island.
Unfortunately, the current administration feels that sending some of the current residents like Amy to nursing homes is a viable option. This is certainly not a critique of nursing homes as there are many excellent long-term care facilities in Rhode Island, but they are not prepared to provide the care needed for Amy and scores like her.
The reality is that these facilities are not set up for the type of rehabilitation younger adults need, like physio and speech therapies that will return them to independent living. Sadly, those with the types of injuries Amy experienced and those that Dr. Decelles described earlier fall into a huge gap in services that only Zambarano can fill.
Kathleen Heren expressed similar concerns, “The administration has publicly stated that most residents do not meet the level of care and should go to a nursing home or home to their families…nursing homes cannot deliver the care the hospital can, nor do they have the knowledge to be able to manage behavioral issues.”
The administration has also floated the idea that some of these residents may be able to return home to family members. In my interactions with the loved ones of residents at Zambarano, it is readily apparent that if they had the skill and ability necessary to take on this task, they surely would. But the nature of the needs of the residents are often so severe and specialized, that such an undertaking would be detrimental to both the resident and the family member. Further, many of the family caregivers themselves are elderly and may also be in need of services in the near future. As Ms. Heren stated, “to suggest families can now become caregivers who may themselves be in their late sixties, is…absurd.”
For the families of residents at Zambarano, just how important has this hospital been for them? Shirley Pacheco, who has a son in treatment there, told us her story, “…it would be a sin to close Zambarano and displace so many to whom this is the only home they know. My son has been a resident there for 26 years after suffering a traumatic brain injury due to an automobile accident. The care that he receives at Zam is exceptional. I know of no other facility that offers their residents the care given there. It is like one big family, where everyone is treated with respect and love. I don't think my son would have survived if it weren't for the care and attention he has received from the dedicated personnel at Zam.”
Pacheco also had harsh words for the way Rhode Island politicians have treated the hospital and the staff long before this latest controversy. "The question I have asked a few government officials in RI over the years when different issues would arise concerning Zambarano is 'How would you feel if it were a member of your family in this facility - your child or your parent?' None of them ever answered my question, but I'm sure we all know that their reactions/decisions would be much different. It is sad to know that there are heartless, uncaring people running our government, with no concern or respect for those with disabilities."
So why are we at this point? According to an article in the Providence Journal, Eleanor Slater Hospital (Cranston and Burrillville), has been "hemorrhaging tens of millions of dollars" when the state fell out of compliance with the Centers for Medicare and Medicaid Services (CMS) in September of 2019, resulting in Rhode Island's inability to collect reimbursement monies from the federal government. Using the phrase, “fell out of compliance”, does not comport with the entire sordid story of why the administration wants to force residents out of Zambarano.
This issue stretches back to 2009 when the American Recovery and Reinvestment Act was signed into law, requiring that all public and private healthcare providers and other eligible professionals be required to adopt and demonstrate “meaningful use” of electronic medical records (EMR) by January 1, 2014, to maintain their existing Medicaid and Medicare reimbursement payments. The phrase "fell out of compliance" should be re-written to say, "the State of Rhode Island neglected this CMS mandate for nearly a decade." And there is more.
Dr. Decelles told me in an email, that he "was part of a workgroup which evaluated several computerized health information systems/electronic medical records for potential use at ESH. One was the VA Hospital's modular system that we could obtain and use at ESH for $10 (ten dollars) - the price of the CD. This $15 million hospital computer system was free upon request because it had been developed with Federal taxpayer dollars and was therefore in the 'public domain'. The decision was made not to obtain that system because it would obligate ESH to years of tech support at $250,000 per year."
So here we are, March 2021, twelve years later, and the "hemorrhaging" of money is in reality a self-inflicted wound. Budget documents have indicated that the state was receiving around $60 million in CMS reimbursement for ESH that has now been cut off. To save $250,000 in tech support annually, they have lost at least $60 million per year in federal reimbursement money and placing this blame squarely on the backs of those in need of these services.
Here are some questions to be considered: Should Zambarano close and the current patients be scattered about the community, what would their lives look like without the staff support and advocacy they currently receive? Who would be there to ensure that they continue to have the right to a good quality of life that others with a voice have in the community? Who will ensure that they continue to have access to healthcare, education, freedom of expression, community, family, and equality? Will these residents be able to advocate for themselves without the caring and supportive staff they are used to?
A life with a disability, even with severe injury or illness, can still have great value to the person, their family, and society. As the mother of a woman with a severe brain injury said, “My little girl is going to be different, but I don’t think that doesn’t mean she won’t be a wonderful daughter, friend, sister, and that we won’t enjoy her for the rest of her life.”
Former Vice-President Hubert Humphrey, in his final recorded speech, said these words, "...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped." How will the morals of Rhode Island be defined when it comes to the decision to keep Zambarano open?
In the end, this is about people, about a quality of life that may only be possible through the unique services provided by Zambarano Hospital and the caring and compassionate staff who work there. Our community is only as strong as the most vulnerable among us, so for the common good and in support of the residents, their families, and the staff, I strongly urge everyone here to work to keep Zambarano hospital open and accessible to those who need it most.
Very truly yours,
R.J. Connelly III
The hearing will be live-streamed online through Capitol TV, which can be accessed at this location: http://www.rilegislature.gov/CapTV/Pages/default.aspx