“We found something.”

A gastroenterologist stood over Jess Delaney-Sloper in the recovery room as she awoke from a colonoscopy. “It most certainly is cancer,” the doctor said.

Delaney-Sloper struggled to make sense of the words. She was a healthy, fit 42-year-old, an avid runner and nurse practitioner. A single bout of rectal bleeding had triggered a small precautionary procedure. Now she lay alone on a hospital bed. It was January 2021, the height of COVID-19, and her husband was waiting in the parking lot to take her home.

Follow-up tests proved the doctor right—only worse: She had stage IV colon cancer. It had spread to her liver. Doctors told her she had two years to live.

The prognosis did not jibe with who Delaney-Sloper knew herself to be. “I thought I was the picture of health,” she says. “I saw my primary care doctor regularly. I worked out every day.” What’s more, she had exhibited none of the other common signs of cancer—weight loss, night sweats, abdominal pain. Just that one minor episode of rectal bleeding.

The doctors encouraged her to make peace with the prognosis. Go live your life, they told her. You don’t want to spend the time you have left in and out of the hospital.

Make peace? Delaney-Sloper had three daughters, ages 7, 9, and 11. She couldn’t accept what amounted to a palliative approach. “I had to be there for them,” she says. “First kisses, puberty, all the things that girls go through—I just couldn’t imagine not being there for that. I couldn’t sit back and accept that diagnosis.”

So she and her husband, Ryan, got to work. They made calls, flew to visit top hospitals, and sought expert opinions across the country in California, New York, and Illinois. Again and again, they heard variations of the same thing: Sorry, there’s nothing we can do.

Finally, a doctor they visited in Boston mentioned an option that might just provide a solution. He connected her with , chief of the at the . The regimen was relatively new—and complicated. The procedure entailed transplanting part of the liver of a living donor. Unlike most transplants, a living donation can be scheduled. This allows doctors to perform the transplant at the optimal moment for cancer patients. And because of Delaney-Sloper’s grim prognosis, she likely would not have qualified for one from a deceased donor anyway.

Hernandez had been building a reputation among his peers for groundbreaking procedures on some of the most desperate of patients—particularly those with colon cancer that had metastasized and spread to the liver. He told Delaney-Sloper that she was an excellent candidate for living donor liver transplant surgery. In tandem with colon surgery, the regimen could potentially remove all traces of cancer from her body and eliminate the need for future chemotherapy.

Hernandez did not sugarcoat the many challenges ahead, but he also promised he would help her meet those obstacles with methodical determination. “I always try to have a Plan A, Plan B, and Plan C,” Hernandez says of his approach to every case.

For perhaps the first time since the diagnosis, Delaney-Sloper felt a real sense of possibility. “There had been a lot of doors shut in our faces,” she says. “But Dr. Hernandez opened the door.”

The story of Delaney-Sloper and Hernandez is one of resilience, persistence, and extraordinary medical achievement. It also reflects something deeper: the power of the larger systems that a modern research university can bring to bear to make the extraordinary possible. Hernandez’s vision is leveraged by a team and an institution built to enable bold ideas and complex treatments. But it’s also the most human kind of story—a hybrid of science and deep care.

Seventy volunteers, two livers

Over the course of the next several months, Delaney-Sloper endured a punishing 12-round regimen of chemotherapy to stabilize her cancer and prevent it from spreading further. In August 2021, she traveled to Rochester and spent a week in the hospital for the first surgery: the removal of a portion of her colon and surrounding lymph nodes, performed by colorectal surgeon and division chief .

The next step was to find a compatible donor, one willing to donate about two-thirds of their liver for Delaney-Sloper’s transplant. She and Ryan gathered dozens of people on a Zoom call to share their story. The couple asked their friends and family to spread the word and to consider getting evaluated as a match. Within 24 hours, 70 people had called in to volunteer for the screening process. “They had to dedicate one nurse just to take calls for me,” she says, clearly moved even four years later by the generosity of their circle.

Her younger brother, Bobby Delaney, a police officer, was the first to call in. He turned out to be a match.

In February 2022, 13 months after her initial diagnosis—and after an additional 10 rounds of chemotherapy—Delaney-Sloper and her brother were in adjacent operating rooms for the lengthy and technically demanding surgical procedures. After ensuring that Delaney-Sloper had no signs of cancer progression, Hernandez removed much of the right lobe of Bobby’s liver, a process that took about six hours.

Then fellow Ģ����ý transplant surgeons and removed Delaney-Sloper’s diseased liver. Finally, Tomiyama completed the transplant of Bobby’s liver to Delaney-Sloper.

Ģ����ý 12 hours after they began, the surgeries were complete: Tomiyama and Hernandez debriefed before going home. The procedure, they told Delaney-Sloper later, was textbook perfect.

While Delaney-Sloper spent the first day or so in a sedation-induced haze with her husband and rotating crews of nurses, she does remember the moment her brother walked in, pushing a wheelchair to maintain his balance. She recalls how good he looked—so much better than she had expected after donating 69 percent of his liver. “Seeing him for the first time, I felt pure joy, an overwhelming love for him, and admiration for his bravery. What he had done for me was incredible, and I was relieved that we both got through,” she recalls. “I felt very hopeful for the future.”

The pair was discharged from the hospital eight days later; they spent about a month at a nearby Airbnb so that doctors could monitor their recoveries. Over the course of the coming months, their livers each regrew almost to full size.

Delaney-Sloper continues to adjust to her post-transplant life; she lives with numbness, tingling, and pain from chemotherapy-induced neuropathy in her feet. She continues to have frequent medical appointments, and she will be on immunosuppressants for life. Yet it’s a new—and in some ways more purposeful—kind of normal. “I could be dead right now,” she says matter-of-factly. But she notes that it has been four years since she woke up after that first devastating colonoscopy—two years past the doctors’ initial prognosis. Her most recent scans show no evidence of disease.

Built to go big

Stories about against-the-odds cases like Delaney-Sloper’s often get simplified to highlight a single patient and a heroic doctor. But this kind of storytelling can obscure a reality that is far more layered.

Hernandez does fit the heroic mold. That’s in part a reflection of his relentless work ethic; he has been known to sketch out surgical ideas on cocktail napkins at conferences and to ditch dinners with colleagues to refine those ideas in his hotel room. He jokes that after his own three children, liver cancer is his “fourth child.”

His drive also comes from a deeply personal source: When Hernandez completed his residency at the Mexican Institute of Social Security, his classmates celebrated with friends and family; he attended the recognition ceremony alone. His mother was home receiving chemotherapy for liver cancer, and the rest of his family remained with her as she fought for her life. She died at age 58.

However we wish to portray Hernandez’s heroism, innovations like his demand extensive teamwork and a deep bench of expertise and resources—as he himself is quick to note. “Living donor liver transplantation requires two operating rooms, two groups of anesthesiologists, two groups of nurses, and a donor team,” Hernandez says, ticking off just a partial list of the surgical team. Success involves hepatologists, radiologists, pathologists, pharmacists, infectious disease specialists, nutritionists, psychologists, social workers, nurse practitioners and coordinators, and administrative and support staff.

Their work is urgently, and increasingly, needed. The incidence of colon cancer in people under the age of 55 has nearly doubled over the past decade and continues to increase by 1 percent a year. Medical experts aren’t sure of the reasons; our changing diet, environmental exposures, even microorganisms in our gut might play a role. But Hernandez and his colleagues are focusing on an even more alarming fact: More of these younger patients are diagnosed at advanced stages. An understanding of potential solutions and how to accelerate them is essential.

Hernandez’s pathbreaking liver surgeries began in the early 2010s, when he was working at the London Health Sciences Centre in southwestern Ontario. There he advanced a distinctive two-stage surgical operation to treat liver cancer and metastasis. First presented in 2012 by a German team at a Miami conference, the ALPPS (Associating Liver Partition and Portal vein ligation for Staged hepatectomy) procedure offered a promising treatment for patients whose liver cancer was so extensive that it was often considered inoperable. In the first step, surgeons removed tumors from the smaller side of the liver and redirected blood flow to help that side regrow. Then, once the healthy part had regrown, surgeons removed the remaining cancerous section so the patient could survive without liver failure.

The audience of surgeons greeted the Germans’ presentation skeptically, pointing out the significant risk of complications. But Hernandez saw potential for patients who had few other options. He pushed forward with ALPPS, carefully selecting patients with the most promising clinical profiles. The procedure worked once, twice, and eventually some 50��times. While the cancer often ultimately returned, it was extending the lives of patients whose cases had seemed to hold little hope.

The field began to take notice. Soon enough, suitors from around the world were hoping to lure him to their institutions. One of those offering a position was , then the chair of the Medical Center’s .

As Hernandez deliberated over his next move—a move that likely would determine where he spent the rest of his career—he saw major potential at URochester. “I had the opportunity to develop a team,” he says. “And I could be a leader that could have an impact not only in upstate New York but nationally.” To have that kind of influence, he knew he had to have more than a single strong champion. He needed the backing of an institution. With that kind of support, he felt confident he would be able to take his biggest ideas as far as they could go.

He had other options, but he chose URochester. And here he began building clinical and research teams.

The next big swing

Hernandez was eager to recruit fiercely dedicated experts with wide-ranging perspectives, a strategy shaped by his own international training. As a young surgeon he had sought out institutions in Mexico, Canada, and Japan, where he had the chance to study some of the most advanced liver procedures. He wanted to learn from the best, wherever they were. The peripatetic path had additional advantages: It gave him insight into the strengths and shortcomings of different healthcare systems and the influence of cultural norms, lessons he would draw on to navigate complex medical challenges.

For example, Japan’s relatively conservative approach to organ donation from deceased donors had led it to rely more heavily on living donor liver transplantation. It was one reason Hernandez spent several months learning specialized techniques at Kyoto University, where such surgeries took place two or three times a week—far more frequently than at hospitals in North America.

So it was understandable that Hernandez’s first Ģ����ý hire would be a Japanese-trained surgeon. Sharing Hernandez’s obsessiveness, Tomiyama was known to practice suturing techniques in his spare time at home. Having worked in Canada and the US, he appreciated both the meticulous approach to surgical techniques that he had learned in Japan and the sense of urgency that moves medicine in America. “The great thing about the US,” Tomiyama says, “is that we try to make things happen as fast as possible.”

Tomiyama would eventually become indispensable for Hernandez’s next big swing: living donor liver transplants for colon cancer patients whose disease had spread to their liver.

A paper by a Norwegian medical team that Hernandez had reviewed for a journal convinced him that such transplants could be part of a cure, despite previous discouraging outcomes that had squelched the practice in the 1990s. With both donor and patient surgeries happening simultaneously, he knew he’d need Tomiyama, a trusted, highly skilled surgical partner, to make the work possible.

To help care for patients before and after a living donor liver transplant, Hernandez has also leaned on the skills of one of his most recent hires, . The Ethiopia-born hepatologist is particularly focused on selecting the right patients for this care: “Are they fit enough to undergo liver transplant? Is their cancer too aggressive to be treated safely and adequately with transplant?” He susses out the answers through a range of factors, including a patient’s response to chemotherapy and a series of biomarkers. Addissie’s goal is to prevent a worst-case scenario: a healthy donor who undergoes major surgery for a recipient who dies during or soon after the transplant.

Medical expertise alone will not guarantee a successful transplant. Leaders like Nancy Metzler, executive director of Transplant Services, ensure that the has the resources, systems, and institutional support for one of the most complex areas in healthcare. While the work of Metzler and her team often gets overlooked, it constitutes an indispensable part of the process. A seemingly trivial misstep—the late signing of a consent form, say—can delay or derail the entire process.

What’s more, ensuring that a patient has a confirmed ride home, or that a nurse is available for a full day to field 70 calls from potential donors, is about more than checking boxes. It’s about creating a larger sense of trust that allows a patient to feel truly cared for. While there are four surgeons in the operating room, Metzler notes, “there are 36 people back here” who have helped get the patient to that point.

The strength of these visible and behind-the-scenes systems leads to extraordinary outcomes. While only a handful of hospitals nationwide have completed even one successful living donor liver transplant for patients with colon cancer that has spread to the liver, Hernandez and his team have completed 26. Data compiled in 2024 of the first 23 patients who have undergone the procedure show that every single one survived at least one year. Ninety-one percent have survived beyond three years. No other institution has come even close.

Talent magnet

Hernandez is clearly competitive, a mindset he frames around leadership and excellence. “Everyone remembers the first person who reached the moon. Neil Armstrong. But who was the second? We want to be the first at Rochester,” he says. “And we want to be the best.” Being a leader requires more than just the technical skills and insight of an individual or even of a highly skilled team like the one Hernandez has strategically helped build. It requires systems and institutional structures that can sustain complexity, support high-stakes care, and turn innovation into standard practice.

One example of this broader, amplifying infrastructure: Ģ����ý’s . It was recently named a National Cancer Institute–designated cancer center, placing it among the top 4 percent of cancer centers nationwide. The designation acts as a magnet for talent. “It allows us to recruit the best and brightest people from across the country,” says , director of the institute. “Under Dr. ’s leadership of our cancer service line, Dr. Hernandez’s colleagues, gastrointestinal experts, pathologists, radiation oncologists, medical oncologists, and many others demonstrate incredible transdisciplinary collaboration, which is an essential characteristic of an NCI-designated center.”

Among many other functions, the institute helps connect specialists across disciplines to support the development of clinical trials and to streamline patient care. The structure enables deep expertise and cross-field collaboration, which in turn allows treatment of complex cancers.

Wilmot also plays a foundational role in research, where advancing a single discovery often requires the expertise of dozens of scientists. For example, under the guidance of Hernandez, fifth-year surgical resident recently authored a about patient selection, insurance approval, and outcomes of living donor liver transplant for those with liver metastases. (The paper includes data from Delaney-Sloper’s procedure.) The 16 authors included 15 from the Medical Center, in areas ranging from surgery to pharmacy. All had links to the Wilmot Cancer Institute.

Beyond the Medical Center, Hernandez can tap into the full depth and breadth of Ģ����ý’s research expertise, which goes well beyond traditional boundaries of medicine. That might mean partnering with an engineer interested in robotic surgery or a biologist studying tissue regeneration—insights that could further advance his work.

Hernandez believes that it may be possible to double or even triple Ģ����ý’s current rate of these highly specialized procedures, currently about 10 per year. He imagines a future Ģ����ý that’s synonymous not just with living donor liver transplants but with other innovative liver surgeries as well.

Still, the goal is not innovation for its own sake. It’s about what that innovation makes possible. For Delaney-Sloper, innovation has meant extra years with her husband and her daughters (now 12, 14, and 16). It has meant more experiences and more milestones. And it has meant a profound connection with her younger brother, who gave her the liver that saved her life.

When she talks about the experience at URochester, she describes it as both “a warm hug” and “a well-oiled machine.” The phrases might seem at odds with each other. Yet together they capture what made her care extraordinary: the kindness and skill of the individuals who provided it, and the precision and power of the system behind them. “I went there for a reason,” she says on a Zoom call a day before she and her family left for a vacation to Zion National Park.

“And I’m still here.”

On January 30, the hottest book at the University wasn’t a national bestseller or a novel adapted into a blockbuster film—it was a 500-year-old Catholic prayer book.

On that evening, a sold-out crowd of nearly 300 people packed into the ’s auditorium to hear Nancy Norwood, the museum’s curator of European Art, and , director of the , discuss the recent acquisition of the pocket-sized Ghent-Bruges Book of Hours.

Filled with richly colored illustrations and Latin calligraphic script, the volume, produced around 1500, serves as a window into another time. “It was used by everyday people of the time who wanted to bring practices of worship into their daily lives,” says Siebach-Larsen. The 456-page book contains prayers, readings, and even a perpetual calendar (meaning that it could be used year after year).

What is a book of hours?

The name is descriptive: A book of hours was designed to help its readers structure time for prayer, while “Ghent-Bruges” refers to the distinctive, detailed style of manuscript illumination found in the two named Belgian cities.

The manuscript was a hit with the evening’s audiences and continues to be on display at the Memorial Art Gallery to the public. It will also serve as a cornerstone of the University’s renowned medieval studies program and collection.

Norwood sees an even more expansive role for the document in the years ahead. “This is an acquisition that will benefit multiple departments—visual studies, religious studies, art history,” she says. “It’s one tiny book, but it consolidates so many different things and extends into all sorts of fields.” Because many of the prayers included in the book were chanted, even faculty from the have expressed interest in integrating it into their teaching and research.

And while complete imaging by Lisa Wright, a digitization specialist for the , will allow for wide access to the book, the value of having the real object is significant. For example, the binding offers clues to how the book was made, the wear on specific images and pages suggests the ways it might have been used, and decorative gilt shines in a way that digital imaging can’t fully capture.

Siebach-Larsen says that there’s something emotional—almost visceral—about having a physical object that many people find meaningful. “There’s something about seeing an object in front of you that allows you to connect with the past in a unique way,” she says. “This book is beautiful, and, at the same time, many of the images are strange to us. But it’s not ‘distant.’ It’s right there in front of you.”

The acquisition marks a significant partnership between the museum and the River Campus Libraries. By pooling their resources and working together, the two University units were not only able to acquire a manuscript that would have been out of reach for either individually but also to ensure that it would be available for their respective events, programs, research, and teaching. “This collaborative aspect has been an area of emphasis for us, and it aligns with the ‘One University’ model that we’re pursuing,” says Siebach-Larsen, adding that the Book of Hours acquisition process could serve as a roadmap for future collaborative efforts at Rochester.

In the meantime, the book functions as both a scholarly reference and a source of fascination, bridging the gaps between teaching, scholarship, and public engagement. It is something that will be studied, admired, puzzled over, and, perhaps most importantly of all, experienced for years to come.

A version of this story appears in the spring 2025 issue of Rochester Review, the magazine of the Ģ����ý.

When Lisa Latten’s son, Ian, was diagnosed with autism at age two and a half in 2007, what she remembers was her fear. “I thought, ‘What am I going to do?’ I had this overwhelming need to close ranks—to protect my child, to protect myself,” she recalls. “As a parent, you recognize that the world is not set up to support our kids, accept our kids, and love our kids.”

In the intervening years, she has found caring doctors and dentists at the Ģ����ý who are skilled at working with Ian and other children who have intellectual and developmental disabilities (IDD). She’s witnessed a significant jump in awareness, as the number of children diagnosed with autism spectrum disorder quadrupled between 2000 and 2020. And she and her son have benefited from research and new approaches to care, including many pioneered and honed at Rochester.

Latten herself has helped propel this change: today, as a clinical administrator in the Medical Center’s , she helps families who have concerns about their child’s development connect with the resources they need. In addition, she often informally provides emotional support to parents who find themselves in the spot she was in 17 years ago. “Sometimes, families just want someone to say, ‘I’ve been that parent, I really do know how you feel,’ ” she says.

The Ģ����ý has long been known as a leader in the field of IDD. It is one of just eight institutions nationwide with three major federally funded programs that support IDD-linked training, research, and advocacy. Over the past decade, the University has invested more than $80 million in IDD research and care, opening new facilities and expanding research programs. Its pediatric clinicians work with more than 15,000 IDD patients annually, and the school’s dentistry program cares for more than 2,000 patients.��

And thanks to a recent $50 million gift from businessman and philanthropist Tom Golisano, these efforts will accelerate even further. Future plans include a new facility, the Golisano Intellectual and Developmental Disabilities Institute, that will bring together more specialists and researchers to help individuals with IDD and their families thrive. They also include increased funding and collaboration for research, training, care, and advocacy.

The Killian J. and Caroline F. Schmitt Chair in Neuroscience and director of the , who has been tapped to lead the new institute, calls it an “extraordinary investment” that will help fuel Rochester’s growth from its already lofty perch among IDD-focused institutions. “It will allow us to paint on an even bigger canvas,” he says.��

Latten knows that the time has never been better: even as she’s seen the positive changes over the course of her son’s life, she knows challenges remain. For example, Ian, now 19, is aging out of pediatric care. While this is part of a positive development nationwide—individuals with IDD are living longer, healthier lives than ever before—it also means that there are fewer options that will support his ongoing care and thriving.��

Even more than that, Latten is ready for a world that will fully embrace her son as he is. “When I think about the world I want to see, or the world that we will leave after I’m gone, I think: ‘Don’t we want a society that is inclusive for our most vulnerable people, where people can get what they need?’ The work we can do is about building that world. I hope that is what a U of R alum would want. The possibilities are right here in our backyard.”

We highlight five pressing challenges in the field of IDD—and how the institute’s researchers, clinicians, patients, and advocates will work toward solutions.

Challenge #1:

Researchers in the IDD field face physical barriers to collaboration.

Solution:

Bring experts doing IDD-related research across disciplines together in one place.

INSIGHT: Across the University, researchers are bubbling with ideas that have the potential to transform IDD care. Currently, more than 100 investigators at the University are focused on IDD research, with more than 200 research projects in process.

Among other things, these projects aim to shorten patients’ hospital stays, illuminate differences among IDD populations at the molecular level, and prevent common complications in IDD individuals, like pneumonia, through targeted interventions.��

The diversity and sophistication of the work is one reason that Rochester is one of only 15 nationally recognized . The designation recognizes institutions with expertise across basic, translational, and clinical research.

But the complexity of the research increasingly demands that experts work together to make meaningful progress, says , CEO emeritus of the Medical Center and former dean of the .

“It used to be that individual laboratories could do everything, but now you need to pull in people who have expertise in specific areas,” he says. “For some brain imaging projects, for example, you need multiple people who understand molecular biology, imaging, and clinical manifestations of complex disease.”

When researchers have offices and labs in a single, signature space, it creates what Foxe calls “the geography of integration.” That’s what he expects the new institute will bring about.

“When you get all the folks from various entities into one space,” he says, “you can have conversations over a pot of coffee, or pop your head around the corner to ask a question of somebody. It will get rid of inertia and barriers.”

Challenge #2:

Care for individuals with IDD is fragmented across many sites and services.

SOLUTION:

Offer coordinated expertise all in one place.

INSIGHT: Long waiting lists for services split across many sites and specialties are among the many frustrations that families of IDD individuals face when seeking care for their loved ones.

It’s a topic that Carrie Baker ’24W (MS), the mother of Ella, a 21-year-old with Down syndrome, knows intimately. “So many people with disabilities, Ella included, see many different specialists. It’s important for their health and longevity for those specialties to understand not just the disability, but to communicate with one another,” says Baker, who is also the director of the Family Experience Program in Developmental and Behavioral Pediatrics.

Just as it addresses barriers to research collaboration, the institute is designed to replace fragmented approaches with holistic care.

, chief of the Division of Developmental and Behavioral Pediatrics, says there are useful models that have been developed in other areas of medicine. “We know that there are models of integrated care where the healthcare system has taken a good look at this issue, like oncology,” he says. “I do think we can solve this. It’s important, because families are asking for more than just solutions to symptoms and challenges. They want to make sure that they, and their children, really have the chance to thrive.”

Challenge #3:

There are too few clinicians who have the expertise to treat the many patients with IDD. They are often centered in a few key hubs, requiring families to uproot their lives to get the care they need.

SOLUTION:

Develop leaders in the field with deep expertise—while also ensuring that all of our medical students get basic training to care for individuals with IDD.

INSIGHT: Professor emeritus of pediatrics spent almost his whole career working with individuals with IDD—but he admits as a medical student, his knowledge of developmental disabilities was limited, and his empathy was minimal. “I had a terrible attitude,” he says. But when he was able to go out into the community and meet these individuals as they were living their normal, daily lives, he was instantly transformed: “It changed my whole focus.”

That’s a big reason that the School of Medicine and Dentistry offers a family experience that connects families and individuals with developmental disabilities with medical students and other learners. “It puts you up close and personal, not as a professional, but as a learner, with people who have developmental disabilities,” he says. “It changes people’s attitudes very quickly.”

Other relatively straightforward types of medical training—such as ensuring that care providers ask how an individual with IDD prefers to communicate—can open up more opportunities for practitioners at every level to support basic care for people with IDD. “More than 10 percent of the population has a developmental disability, but nowhere close to 10 percent of curriculum time goes to thinking about how to work with them,” Sulkes says.

Rochester will also continue to operate the federally funded (LEND), a program that has trained thousands of professionals since its inception in 1994. “People in different specialties receive general training, but never really learn how to work with the disability community,” says LEND director ’02 (MS), ’07 (PhD), ’08M (Flw). “Our program is unique because we train specialists and advocates to become leaders in the field of developmental disabilities.” Over the years, LEND has trained professionals in 14 different disciplines, including doctors, psychologists, dentists, and educators.

As Rochester experts continue to work on these projects, director of the Strong Center for Developmental Disabilities says that she and others are particularly excited about the ways that the institute can help bring together both experts at Rochester and the disability community beyond the University. “We began working on a strategic plan before we knew there would be a new institute, so we have a strong head start and template for how we’ll approach this type of unification,” she says.

Challenge #4:

Dental care is especially hard for people with IDD to access and is their number one unmet health need.

SOLUTION:

Build on the Eastman Institute for Oral Health’s history of innovations in care for people with IDD by expanding specialty care and resident training.

INSIGHT: Visiting a dentist for complex oral care can be anxiety provoking for any patient. For patients with IDD, many of whom have a heightened sensitivity to sensory stimuli, that anxiety can be a reason to avoid necessary care. The (EIOH) has been providing care for people with IDD for 45 years through community clinics and a custom-designed mobile unit and, in that time, has introduced a number of adaptations to meet the needs of these patients. Chief among those is a set of techniques to help reduce patients’ anxiety while slowly building trust. As a result, EIOH has been able to provide care without anesthesia in many instances. Hundreds of EIOH residents have been trained in the techniques and are applying their skills throughout the US and around the world. An existing specialty clinic, renamed Golisano Specialty Care, and additional oral health care facilities in a completed IDD institute “will allow us to significantly increase our impact locally and globally,” says EIOH Director .

Challenge #5:

The voices of IDD individuals and their advocates are often quashed because of stereotypes, power imbalances, and lack of representation.

SOLUTION:

Put individuals with IDD and other advocates at the heart of decision making.

INSIGHT: Strong Center advocacy specialist has spent a lifetime bumping up against a world that was designed for walkers. When she rolls up to a set of stairs in her wheelchair, it puts that reality into sharp focus. “[In the past,] the person with disability was the issue: maybe I should have found a different way to approach the steps,” she says. “Maybe I should’ve booty scooted up the steps.”

The implications of that barrier are that the systems in place are acceptable, and that an individual must adapt to those systems. But more recently, the spotlight has shifted to the flaws in the systems themselves. “The issue is not me,” Flores says. “[Maybe there just needs to be] a ramp on the side of the steps.”

Through the Strong Center, a federally funded University program that helps people with disabilities live their best lives in their chosen communities, Flores shares personal stories like these with many audiences to help advance policy and practice for individuals with IDD. By sharing research, news, and anecdotes, she helps unpack the complexities that people with IDD face in their daily lives.

One overarching goal of the Strong Center’s work is to help give individuals with IDD and their families a stronger sense of agency in efforts related to their support and care.

For example, a Strong Center–supported effort is helping ensure that people with disabilities and their family advocates are fully included and competitively paid as team members to help co-design clinical and research programs at Rochester, says Baker, the family experience coordinator in Developmental and Behavioral Pediatrics. “A mantra of the disability community that we really try to live out in our work is ‘Nothing about us, without us.’”

This story appears in the fall 2024 issue of Rochester Review, the magazine of the URochester.