{"id":628502,"date":"2024-12-04T14:38:33","date_gmt":"2024-12-04T19:38:33","guid":{"rendered":"https:\/\/www.rochester.edu\/newscenter\/?p=628502"},"modified":"2025-11-19T07:58:31","modified_gmt":"2025-11-19T12:58:31","slug":"review-fall-2024-catalyst-for-change-intellectual-and-developmental-disabilities-628502","status":"publish","type":"post","link":"https:\/\/www.rochester.edu\/newscenter\/review-fall-2024-catalyst-for-change-intellectual-and-developmental-disabilities-628502\/","title":{"rendered":"A catalyst for change"},"content":{"rendered":"

The new Golisano Intellectual and Developmental Disabilities Institute will drive transformations in IDD research, training, care, and advocacy.<\/h2>\n

When Lisa Latten\u2019s son, Ian, was diagnosed with autism at age two and a half in 2007, what she remembers was her fear. \u201cI thought, \u2018What am I going to do?\u2019 I had this overwhelming need to close ranks\u2014to protect my child, to protect myself,\u201d she recalls. \u201cAs a parent, you recognize that the world is not set up to support our kids, accept our kids, and love our kids.\u201d<\/p>\n

\n

About Tom Golisano<\/strong><\/h3>\n

\"Golisano
\nGolisano\u2019s $50 million gift to create the Golisano Intellectual and Developmental Disabilities Institute isn\u2019t the only major commitment he\u2019s made in the last several months. In October, Inside Philanthropy<\/em><\/a> showcased the extraordinary commitments the Rochester area native is making to Upstate New York this year. Read an excerpt<\/a>.<\/p>\n<\/div>\n

In the intervening years, she has found caring doctors and dentists at the University of Rochester<\/a> Medical Center<\/a> who are skilled at working with Ian and other children who have intellectual and developmental disabilities (IDD). She\u2019s 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.<\/p>\n

Latten herself has helped propel this change: today, as a clinical administrator in the Medical Center\u2019s Division of Developmental and Behavioral Pediatrics<\/a>, she helps families who have concerns about their child\u2019s 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. \u201cSometimes, families just want someone to say, \u2018I\u2019ve been that parent, I really do know how you feel,\u2019 \u201d she says.<\/p>\n

The University of Rochester 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\u2019s dentistry program cares for more than 2,000 patients.\u00a0<\/span><\/p>\n

And thanks to a recent $50 million gift<\/a> 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<\/a>, 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.<\/p>\n

\"Foxe
DIRECTOR:<\/strong> John Foxe, the Killian J. and Caroline F. Schmitt Chair in Neuroscience and director of the Del Monte Institute for Neuroscience, has been tapped to direct the Golisano Intellectual and Developmental Disabilities Institute.<\/figcaption><\/figure>\n

The Killian J. and Caroline F. Schmitt Chair in Neuroscience and director of the Del Monte Institute for Neuroscience<\/a> John Foxe<\/a>, who has been tapped to lead the new institute, calls it an \u201cextraordinary investment\u201d that will help fuel Rochester\u2019s growth from its already lofty perch among IDD-focused institutions. \u201cIt will allow us to paint on an even bigger canvas,\u201d he says.\u00a0<\/span><\/p>\n

Latten knows that the time has never been better: even as she\u2019s seen the positive changes over the course of her son\u2019s 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\u2014individuals with IDD are living longer, healthier lives than ever before\u2014it also means that there are fewer options that will support his ongoing care and thriving.\u00a0<\/span><\/p>\n

Even more than that, Latten is ready for a world that will fully embrace her son as he is. \u201cWhen I think about the world I want to see, or the world that we will leave after I\u2019m gone, I think: \u2018Don\u2019t we want a society that is inclusive for our most vulnerable people, where people can get what they need?\u2019 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.\u201d<\/p>\n

We highlight five pressing challenges in the field of IDD\u2014and how the institute\u2019s researchers, clinicians, patients, and advocates will work toward solutions.<\/p>\n

\n

Challenge #1: <\/strong><\/h3>\n

Researchers in the IDD field face physical barriers to collaboration.<\/b><\/p>\n

Solution:<\/strong><\/h4>\n

Bring experts doing IDD-related research across disciplines together in one place.<\/strong><\/p>\n

INSIGHT: <\/b>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.<\/p>\n

Among other things, these projects aim to shorten patients\u2019 hospital stays, illuminate differences among IDD populations at the molecular level, and prevent common complications in IDD individuals, like pneumonia, through targeted interventions.\u00a0<\/span><\/p>\n

The diversity and sophistication of the work is one reason that Rochester is one of only 15 nationally recognized Intellectual and Developmental Disabilities Research Centers<\/a>. The designation recognizes institutions with expertise across basic, translational, and clinical research.<\/p>\n

\"Woman
FRONTIERS IN RESEARCH:<\/strong> A Mobile Brain\/Body Imaging or MoBI facility at the Del Monte Institute for Neuroscience enables study participants to carry out a variety of tasks requiring sensory integration, motor planning, and sequenced execution of movements as brain activity and fine motor data are collected simultaneously. It is one of the research tools to be consolidated under the umbrella of the Golisano IDD Institute. (University of Rochester photo \/ John Schlia)<\/figcaption><\/figure>\n

But the complexity of the research increasingly demands that experts work together to make meaningful progress, says Mark Taubman<\/a>, CEO emeritus of the Medical Center and former dean of the School of Medicine and Dentistry<\/a>.<\/p>\n

\u201cIt used to be that individual laboratories could do everything, but now you need to pull in people who have expertise in specific areas,\u201d he says. \u201cFor some brain imaging projects, for example, you need multiple people who understand molecular biology, imaging, and clinical manifestations of complex disease.\u201d<\/p>\n

When researchers have offices and labs in a single, signature space, it creates what Foxe calls \u201cthe geography of integration.\u201d That\u2019s what he expects the new institute will bring about.<\/p>\n

\u201cWhen you get all the folks from various entities into one space,\u201d he says, \u201cyou 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.\u201d<\/p>\n

\n

Challenge #2: <\/strong><\/h3>\n

Care for individuals with IDD is fragmented across many sites and services.<\/strong><\/p>\n

SOLUTION: <\/b><\/h4>\n

Offer coordinated expertise all in one place.<\/strong><\/p>\n

INSIGHT: <\/b>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.<\/p>\n

It\u2019s a topic that Carrie Baker \u201924W (MS), the mother of Ella, a 21-year-old with Down syndrome, knows intimately. \u201cSo many people with disabilities, Ella included, see many different specialists. It\u2019s important for their health and longevity for those specialties to understand not just the disability, but to communicate with one another,\u201d says Baker, who is also the director of the Family Experience Program in Developmental and Behavioral Pediatrics.<\/p>\n

Just as it addresses barriers to research collaboration, the institute is designed to replace fragmented approaches with holistic care.<\/p>\n

Dennis Kuo<\/a>, chief of the Division of Developmental and Behavioral Pediatrics, says there are useful models that have been developed in other areas of medicine. \u201cWe know that there are models of integrated care where the healthcare system has taken a good look at this issue, like oncology,\u201d he says. \u201cI do think we can solve this. It\u2019s 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.\u201d<\/p>\n

\n

Challenge #3: <\/strong><\/h3>\n

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.<\/strong><\/p>\n

SOLUTION: <\/strong><\/h4>\n

Develop leaders in the field with deep expertise\u2014while also ensuring that all of our medical students get basic training to care for individuals with IDD.<\/strong><\/p>\n

INSIGHT: <\/b>Professor emeritus of pediatrics Steve Sulkes<\/a> spent almost his whole career working with individuals with IDD\u2014but he admits as a medical student, his knowledge of developmental disabilities was limited, and his empathy was minimal. \u201cI had a terrible attitude,\u201d 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: \u201cIt changed my whole focus.\u201d<\/p>\n

\"Infographic
(University of Rochester illustration \/ Michael Osadciw)<\/figcaption><\/figure>\n

That\u2019s 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. \u201cIt puts you up close and personal, not as a professional, but as a learner, with people who have developmental disabilities,\u201d he says. \u201cIt changes people\u2019s attitudes very quickly.\u201d<\/p>\n

Other relatively straightforward types of medical training\u2014such as ensuring that care providers ask how an individual with IDD prefers to communicate\u2014can open up more opportunities for practitioners at every level to support basic care for people with IDD. \u201cMore 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,\u201d Sulkes says.<\/p>\n

Rochester will also continue to operate the federally funded Leadership Education in Neurodevelopmental and related Disabilities<\/a> (LEND), a program that has trained thousands of professionals since its inception in 1994. \u201cPeople in different specialties receive general training, but never really learn how to work with the disability community,\u201d says LEND director Laura Silverman<\/a> \u201902 (MS), \u201907 (PhD), \u201908M (Flw). \u201cOur program is unique because we train specialists and advocates to become leaders in the field of developmental disabilities.\u201d Over the years, LEND has trained professionals in 14 different disciplines, including doctors, psychologists, dentists, and educators.<\/p>\n

As Rochester experts continue to work on these projects, director of the Strong Center for Developmental Disabilities Suzannah Iadarola<\/a> 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. \u201cWe 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\u2019ll approach this type of unification,\u201d she says.<\/p>\n

\n

Challenge #4: <\/strong><\/h3>\n

Dental care is especially hard for people with IDD to access and is their number one unmet health need.<\/strong><\/p>\n

SOLUTION: <\/b><\/h4>\n

Build on the Eastman Institute for Oral Health\u2019s history of innovations in care for people with IDD by expanding specialty care and resident training.<\/strong><\/p>\n

INSIGHT: <\/b>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 Eastman Institute for Oral Health<\/a> (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\u2019 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 \u201cwill allow us to significantly increase our impact locally and globally,\u201d says EIOH Director Eli Eliav<\/a>.<\/p>\n

\"Dental
TRUST BUILDING:<\/strong> Complex Care Center dental assistant Maureen Steinbacher forms a bond with patient David Goodnough. (University of Rochester photo \/ Keith Bullis)<\/figcaption><\/figure>\n

Challenge #5: <\/strong><\/h3>\n

The voices of IDD individuals and their advocates are often quashed because of stereotypes, power imbalances, and lack of representation.<\/strong><\/p>\n

SOLUTION: <\/b><\/h4>\n

Put individuals with IDD and other advocates at the heart of decision making.<\/strong><\/p>\n

INSIGHT: <\/b>Strong Center advocacy specialist Jeiri Flores<\/a> 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. \u201c[In the past,] the person with disability was the issue: maybe I should have found a different way to approach the steps,\u201d she says. \u201cMaybe I should\u2019ve booty scooted up the steps.\u201d<\/p>\n

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. \u201cThe issue is not me,\u201d Flores says. \u201c[Maybe there just needs to be] a ramp on the side of the steps.\u201d<\/p>\n

\"Emily
PATIENT-CENTERED: <\/strong>Patient spokesperson Emily Brushafer, who spoke at the June 2024 announcement of the new institute, is employed as a dietary aide at UR Medicine Noyes Health. A basic principle of the new institute is that people like Brushafer and family advocates have a voice in the co-design of research as well as decision making about care. (University of Rochester photo \/ John Scalia)<\/figcaption><\/figure>\n

Through the Strong Center, a federally funded University Center for Excellence in Developmental Disabilities<\/a> 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.<\/p>\n

One overarching goal of the Strong Center\u2019s work is to help give individuals with IDD and their families a stronger sense of agency in efforts related to their support and care.<\/p>\n

For example, a Strong Center\u2013supported 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. \u201cA mantra of the disability community that we really try to live out in our work is \u2018Nothing about us, without us.\u2019\u201d<\/p>\n

\n

This story appears in the fall 2024 issue of <\/em>Rochester Review, the magazine of the University of Rochester.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

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