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Tom Golisano makes $50 million commitment to the University of Rochester to build the new Golisano Intellectual and Developmental Disabilities Institute

Thursday, June 13, 2024

The gift is the largest single gift in University history and the largest single gift made by Golisano.The University of Rochester announced today that entrepreneur, philanthropist, and civic leader B. Thomas “Tom” Golisano has made a historic $50 million commitment, making it possible to build the Golisano Intellectual and Developmental Disabilities Institute at the University of Rochester Medical Center. The new world-class transdisciplinary center will provide solutions to the health and quality of life issues that affect people with intellectual and developmental disabilities (IDD). Those with IDD are a traditionally underserved population, with approximately 19,000 people affected locally, 120,000 regionally, and 200 million worldwide.

Golisano’s gift will significantly expand the University’s distinctive strengths in IDD patient care, community outreach, and caregiver support programs. These span the University’s schools, institutes, departments, centers, and programs and include such areas as its Complex Care Center, Department of Neurology, Department of Pediatrics and its Division of Developmental and Behavioral Pediatrics, Leadership Education in Neurodevelopmental Disabilities (LEND), University Center for Excellence in Developmental Disabilities (UCEDD), Ernest J. Del Monte Institute for Neuroscience and its Intellectual and Developmental Disabilities Research Center (IDDRC), and the Eastman Institute for Oral Health (EIOH).

The gift will also make it possible to bring together these resources within one institute; to become the worldwide gold standard for IDD health, services, and outreach; and to expand and form new regional, national, and global partnerships with leading academic and health care institutions and community agencies.

Golisano’s gift also names the Golisano Specialty Clinic at Eastman Dental Center, which serves nearly 2,000 people with IDD each year.

“Creating a better world for people with IDD has been a passion of mine for over 40 years. I know that this is a shared goal with Golisano Children’s Hospital and the URMC as they have proven through their ongoing commitment and growth in this field of care,” says Golisano. “URMC’s vision for the new Golisano IDD Institute takes that dedication to a new and unprecedented level, putting patients at the center of every focus and providing one-stop integrated care and coordinated customized services. The impact will be an enhanced quality of life and access to care that, before now, has only been a dream for people with intellectual and developmental disabilities and their families.”

Between his personal giving and his foundation, Golisano’s total philanthropy to the University of Rochester Medical Center now nears $100 million. In addition to today’s commitment, in 2002, Golisano donated $14 million to build the Golisano Children’s Hospital (GCH), to help recruit outstanding faculty, and to expand programs in cardiac care, general surgery, neurology, and more. In 2011, he contributed another $20 million to GCH to build a new hospital, and in 2020 made a $5 million gift to establish the Golisano Pediatric Behavioral Health and Wellness Center.

Golisano has given more than $145 million to organizations globally that are dedicated to advancing the health and social inclusion of people with IDD, including Special Olympics and the Golisano Children’s Hospitals in Rochester and Syracuse, New York, and Southwest Florida. Today’s gift marks the largest single gift that Golisano has ever made.

“I am tremendously grateful to Tom for his visionary commitment to IDD, to this University, and to his hometown of Rochester,” says Sarah C. Mangelsdorf, University of Rochester President and the G. Robert Witmer, Jr. University Professor. “His transformative generosity will propel our strengths, deepen our commitment to IDD, and truly change lives around the world. There is no question that those with IDD will have a better, brighter future because of Tom Golisano.”

“As board chair, I speak for all University trustees when I say how grateful we are to Tom Golisano and his foundation for this historic gift,” says Richard B. Handler, CEO of Jefferies Financial Group. “Through his actions, Tom has become the embodiment of President Mangelsdorf’s vision of boundless possibility, as outlined in the University’s strategic plan. This gift will change the University of Rochester, our Medical Center, and our community forever and it will inspire others to follow in Tom’s large footsteps.”

The University has named John Foxe, the Killian J. and Caroline F. Schmitt Chair in Neuroscience and director of the Del Monte Institute for Neuroscience, to direct the new institute. “I couldn’t be happier, more proud, and more inspired to take on this role, providing solutions to the health and quality of life issues that affect people with IDD,” he says. “The institute will serve as a pivotal hub for excellence and will advance, advocate, serve, and champion IDD care, treatments, and education around the world. Thank you, Tom, for this exceptional gift and for changing people’s lives by creating the world’s number-one IDD institute.”

Resources will immediately serve people with IDD while propelling the institute into prominence, allowing the University to accomplish now what it estimates would take 20 years otherwise. Golisano’s gift places the University among the most recognizable centers in the nation today—one of eight with the three core requirements of an IDDRC, LEND, and UCEDD.

Adds Foxe, “Combining our strengths in therapeutic innovation, specialized IDD training, and community partnerships with our exceptional strengths in delivering quality, cutting-edge health care across our specialty clinics will position the Golisano IDD Institute to provide new models of IDD care.”

Foxe also notes that over the past nine years, the University has invested nearly $80 million in IDD programs. “Although our clinical, therapeutic, and educational programs make Rochester an important regional and national resource, we must do more to address the growing needs of those with IDD,” he says. “Tom’s gift will help us close gaps, address challenges, meet demands, and expand educational opportunities, curricula, and community partnerships. We can now purchase the highly sophisticated tools required to allow breakthroughs in diagnosis and treatment, hire and train more professionals, and better meet the growing demand for services.”

Adds David Linehan, CEO of the University of Rochester Medical Center, dean of the School of Medicine and Dentistry, and senior vice president for health sciences for the University of Rochester, “Tom’s generosity is truly transformational. Because of him, URMC can increase our clinical services and access to care—an enormous need in our region—and become the global leader in IDD medical evaluations and diagnoses, the training of IDD professionals, and advocacy, assistance, and consultation programs for the lasting benefit of those with IDD.”

“Our team at GCH includes leaders in patient care, training, research, and community partnerships, all working together to improve care, health, and quality of life for individuals with IDD. Tom Golisano’s gift will facilitate additional growth, collaboration, and coordination to build on this commitment in a way that is unprecedented,” says Jill Halterman, chair of the Department of Pediatrics and physician-in-chief of Golisano Children’s Hospital. “On behalf of the children and families who will benefit from this support, we are so incredibly thankful.”

Eastman Institute for Oral Health Director Eli Eliav adds, “Last year, EIOH was the largest provider of dental care to people with special needs, serving nearly 2,000 patients with IDD from more than 40 New York counties in our community clinics, specialty care clinics, and Strong Memorial Hospital,” he says. “Tom Golisano has supported this work for many years, and we are extremely grateful for the gift he is announcing today, which will enable EIOH to expand clinical services and train more dentists to provide compassionate care that helps people with IDD maintain healthy smiles.”

“Tom Golisano is a true innovator and changemaker. He sees opportunities others don’t, understands the importance of talent and leadership, and brings people together to create solutions,” says Thomas Farrell, senior vice president for University Advancement. “We can all learn from his drive to make our community and the world a better place.”

Plans are underway for the new facility, which will be located on a to-be-determined site on the University of Rochester’s Medical Center Campus.

Building Better Bridges: Outcomes of a Community-Partnered New School Transition Intervention for Students on the Autism Spectrum

Wednesday, June 12, 2024

Originally published June, 12 2024 in the Journal of Autism and Behavioral Disorders. Nuske, H.J., Smith, T., Levato, L. et al. Building Better Bridges: Outcomes of a Community-Partnered New School Transition Intervention for Students on the Autism Spectrum. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06285-7

Abstract

New school transitions can be challenging for students on the autism spectrum. No published, evidence-based interventions exist to support families and teachers of students transitioning to elementary and secondary school during this critical period. Using Community Partnered Participatory Research, we developed Building Better Bridges (BBB), a caregiver coaching intervention that includes training on effective school communication, educational rights, advocacy, and child preparation strategies. We compared BBB (n = 83) to a module/resources-only comparison (n = 87) in a four-site randomized controlled trial in racially and ethnically diverse, under-resourced communities. In our intent-to-treat analysis, caregivers and teachers in BBB rated students’ transitions to the new classroom as more positive, relative to the comparison group. Results suggest this low-cost intervention can improve the transition process for families and students at high risk of poor transitions.

For any student, transitioning from one stage of schooling to another, such as from preschool to elementary school or from elementary school to secondary school, can be challenging. For students on the autism spectrum, these challenges in new school transitions may be especially pronounced because of social communication differences, preferences for sameness and consistency, difficulties tolerating uncertainty (Boulter et al., 2014), and difficulty navigating complex social environments (American Psychiatric Association, 2013; Boulter et al., 2014; Cuccaro et al., 2003). Three recent systematic reviews found that students on the autism spectrum often experience increased anxiety, difficulties with self-regulation, and increased social pressure around school transitions (Fontil et al., 2020; Marsh et al., 2017; Nuske et al., 2019). Their caregivers (we use the term ‘caregivers’ broadly to refer to parents and other caregivers) often feel overwhelmed with complex placement decisions and worry about their children’s wellbeing (Fontil et al., 2020; Nuske et al., 2019). Teachers also struggle, feeling ill-equipped to provide appropriate support, often with inadequate resources (Fontil et al., 2020; Nuske et al., 2019).

The most useful transition strategies identified for students involved visiting the new school ahead of time, using visual schedules/calendars and social supports (peer buddies, designating a safe person/space), and supporting self-regulation or coping strategies (Marsh et al., 2017; Nuske et al., 2019). For parents, the most useful strategies included placement identification, included use of a transition binder that describes the practical steps throughout the school year, fostering communication between the home and both pre-transition (before the transition) and post-transition (after the transition) schools, linking with community organizations and parent support networks, and empowering parents to advocate for their child wellbeing (Fontil et al., 2020; Marsh et al., 2017; Nuske et al., 2019).

Fontil et al. (2020) highlighted that in particular, collaboration between teachers and families was often described as the most important facilitator of successful school beginnings. Marsh et al. (2017) emphasized that while parents and teachers were found to be highly involved in the transition process, transition supports were generic and rarely individualized to each student’s particular needs. In previous research, we found that teachers’ perceptions of successful student new school transition planning was directly associated with the size of their support network including connections between school and home (Dimachkie Nunnally et al., under review), such that teams with more perceived support had better planning.

Appropriate supports for teachers and their students on the autism spectrum can facilitate new school transitions. Although previous reviews have included sections on transitions supports, results here were observational and largely qualitative, focusing on the reported facilitators to successful new school transitions (Fontil et al., 2020; Marsh et al., 2017; Nuske et al., 2019). To our knowledge, only one intervention specifically designed to address the challenges posed during inter-school transitions of students on the autism spectrum has been evaluated to date—the Systemic Transition in Education Program for Autism Spectrum Disorder (STEP-ASD; Mandy et al., 2016). STEP-ASD is a manualized program for students on the autism spectrum in general education programs who are transitioning from into secondary school. The STEP-ASD manual contains a ‘transitions pack’ with information and resources for school staff, including how to familiarize the student with the new school and other ways to increase the predictability of the educational environment, chapters on specific core (e.g., social interaction difficulties) and associated (e.g. executive function difficulties) features of autism to increase teachers general knowledge about autism and provide practical, school-based support strategies, with associated resources provided in appendices (for more details see Mandy et al., 2016). A quasi-experimental study found that STEP-ASD reduced school-reported emotional and behavioral difficulties among public school students on the autism spectrum without a diagnosed intellectual disability (Mandy et al., 2016). To date, no such intervention has been evaluated for students on the autism spectrum who are transitioning to primary school or who have co-occurring intellectual disability, or for supporting caregivers and teachers in under-resourced communities or within predominantly minoritized populations (e.g., including people of color and families with limited financial resources). We use the term “minoritized” instead of minority to acknowledge that systemic inequities place individuals into a minority “at risk” status (Flanagin et al., 2021; Sotto-Santiago, 2019). The disparities that minoritized families of children on the autism spectrum experience in service availability and access (Angell et al., 2018; Mandell et al., 2009) point to the critical need for interventions to be developed specifically with the needs of these families in mind.

Indeed, some coaching interventions for caregivers of children on the autism spectrum have targeted caregiver knowledge and empowerment in their child’s special education program (e.g., Luelmo et al., 2021; Magaña et al., 2017), but none to our knowledge have focused specifically on school transitions. Involving caregivers is critically important, given that caregiver engagement in their child’s intervention is associated with greater consistency in use of intervention strategies across home and school (Crosnoe, 2015; McWilliam et al., 1999) and more effective strategies for problem solving (Newmann & Wehlage, 1995).

New intervention programs often are challenging to implement in schools; barriers include lack of leadership buy-in, limited resources, and inconsistent procedural fidelity (Iadarola et al., 2015; Langley et al., 2010). One way to address these barriers is to develop meaningful partnerships with community stakeholders, including those who will be responsible for adopting, implementing, and sustaining the program (Pellecchia et al., 2018). Community Partnered Participatory Research (CPPR) is a framework designed to increase meaningful collaboration and shared decision-making between communities and academic institutions (Jones, 2018) that has successfully facilitated implementation of various health-related interventions in communities (Hankerson et al., 2018; Wells et al., 2013). Authentic partnership also supports health equity by ensuring that the research relationship includes members of minoritized communities and that their perspectives are integrated into all facets of the work (Wells & Jones, 2009).

Developing and Refining the Building Better Bridges Intervention

To address the gaps in the literature, we developed a transition-focused intervention, called Building Better Bridges (BBB), that emphasized caregiver engagement. We began by having the CPPR developers (L. Jones) train the study investigators. We then formed community partnerships at study sites (Los Angeles, Davis, Philadelphia, and Rochester). Our partners provided input at each step of the intervention development and study. Partnership teams included family members who had children or youth on the autism spectrum, autistic youth themselves, service providers involved with school-based transition processes in preschools and school districts serving minoritized families, school district administrators, early intervention system providers, teachers, specialized service providers, and other agency representatives. At some sites, partners also included community organizations with a broader focus on child, family, and community-wide initiatives and those providing outreach to specific racial and ethnic groups. Partnership meetings occurred monthly throughout intervention development and recruitment, with some sites engaging in shared community-academic leadership facilitating each meeting and others had academic partners leading meetings. Locations of meetings also varied by site, depending on the needs of partners, either alternating between the university campus and community locations, or meeting exclusively in the community. Partners engaged in discussion about the study processes, co-developed intervention materials and reviewed materials in development, shared recruitment ideas, and discussed ways to troubleshoot barriers. All study design, protocols, recruitment, and implementation for this study was collaboratively produced by the community research partnership, including this manuscript.

Second, as described above, we conducted a systematic literature review on studies of school transitions in students on the autism spectrum (Nuske et al., 2018). Third, we conducted focus groups and interviews with teachers and caregivers of students on the autism spectrum to understand their needs in transitioning students on the autism spectrum across school systems. Caregivers identified supportive strategies, including school tours, transition workshops, meetings with staff about the upcoming transitions, and transition skills for the youth as important to supporting new school transitions (Smith et al., 2021). Both caregivers and teachers identified the importance of building and maintaining school teams that include caregivers, pre-transition teachers, post-transitions teachers and other providers for successful transitions (Smith et al., 2021), which is consistent with prior systematic reviews (Fontil et al., 2020; Marsh et al., 2017; Nuske et al., 2019).

Integrating these findings helped us develop a first draft of BBB, which we then pilot tested. In this pilot, we included a “transition facilitator,” a school staff member at the pre-transition school, who would receive BBB coaching and resources to guide the student and their family through the school transition. During the pilot, however, we found that school staff were often reluctant to take on the role, feeling that it was not within the scope of their employment or capacity to support students once they transitioned out of their school. We, therefore, re-conceptualized the intervention as a caregiver-implemented intervention in which the student’s caregiver was the “transition facilitator,” who would receive coaching from the research team, since the caregiver was the constant person on the student’s school team who could support the student from one school context to the next. This reconceptualization follows recommendations of systematic reviews that emphasized caregivers’ role in facilitating successful school beginnings and the importance of collaborative practices (Fontil et al., 2020; Marsh et al., 2017; Nuske et al., 2019).

The revised BBB intervention included modules that supported caregivers (“caregiver modules”) in advocating for their student by gathering key information from pre-transition teachers about their student to pass on to post-transition teachers. Caregivers also learned how to communicate effectively with school teams, gained knowledge about educational policy and their rights related to school transitions, and learned strategies for assisting their student in preparing for the transition in partnership with a coach to support their use of the BBB materials. See Methods, ‘Building Better Bridges Intervention’ section for more details.

What Families of Children with Medical Complexity Say They Need: Humanism in Care Delivery Change

Tuesday, May 7, 2024

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity quality improvement initiative, co-led with family colleagues, illuminates a critical real-world view of systems change to address unintended bias and demystify the medical model of care. We share candid themes in which families describe the need for systems to counteract widespread misconceptions and bias to achieve meaningful system change. We held family-designed, family-led focus groups (N = 127 across 27 groups) within 10 diverse state teams. Families were asked about CMC quality of life and family wellbeing.

Dr. Adriana Verwey Publishes Updated Inclusive Recreation Brochure

Saturday, March 9, 2024

photo of Dr. Verwey This week at the 24th annual Anne E. Dyson memorial grand rounds and community health symposium Dr. Adriana Verwey, Assistant Professor Department of Pediatrics, Developmental & Behavioral Pediatrics was the special guest speaker in a discussion about promoting physical opportunities for all children. Dr. Verwey presented her updated inclusive recreation brochure 'A Guide to Recreation and Leisure for All in Greater Rochester'.

"Accessible recreation is a civil right and outlined in ADA accessible design standards" said Dr. Verwey

She empathized that providers who have knowledge of resources are a main facilitator of promoting inclusive recreation for children with disabilities. She discussed the health disparities that exist for individuals with disabilities and how the benefit of physical activity can improve these health disparities. Her research shows that the barriers to exercise for people with disabilities are not only program cost or transportation as would be expected, but nearly 50% of individuals reported they did not know how to exercise and, they did not know where to exercise or what facilities were available to them.

By creating this inclusive recreation brochure Dr. Verwey aims to share her knowledge of resources to accessible recreation throughout the Rochester community. She said,

“There are a lot of opportunities in our community for physical activity for individuals with disabilities”

The interactive map below was created by Dr. Verwey and displays various options for Inclusive Recreation, Dance/Theater/Music/Art, Parks and Playgrounds, and TIES (Together Including Every Student) programming within the various school districts in our region. Although we have a lot here, we don’t have enough here and we need more, she said. Dr. Verwey wants the community to know that there are places you can go! This brochure was supported with grants from the American Academy of Pediatrics, Special Olympics, and The Hoekelman Center. A link to the brochure can be found at the bottom of this article.

Panelists at this event included members of local Rochester businesses and organizations such as - Healthi Kids, Rochester Accessible Adventures, Reconnect Rochester, Abilities Movement, and the Department of Recreation and Human Services.

A Guide to Recreation and Leisure for All in Greater Rochester Brochure

The University of Rochester Intellectual and Developmental Disabilities Research Center is transforming the landscape of exploration

Monday, January 29, 2024

Photo of Student in EEG Booth

Batten disease is a devastating rare genetic disorder. While the genetic flaw that causes this disease is well known, scientists do not fully understand the connection between this mutation and the disease’s symptoms like behavioral changes, cognitive impairment, seizures, and vision loss. John Foxe, PhD, co-director of the University of Rochester Intellectual and Developmental Disabilities Research Center (UR-IDDRC), recently described a potential neuro marker for the disease that could represent a way to better understand this complex disease and, ultimately, help researchers measure outcomes in clinical trials.

“We [researchers] know it is a genetic single gene mutation that causes Batten disease and as a scientist that really gives us something to focus on,” said Foxe, who is also director of the Del Monte Institute for Neuroscience at the University of Rochester. “But clinically, what we do not fully understand is how the mutation changes connections in the brain. Our work has been aimed at developing a much better understanding of these changes and developing ways to measure these accurately. If we can figure out how to treat Batten disease, there's a very good chance we will gain insight into how to treat other rare diseases.”

The University is a recognized leader in Batten disease research and care and has been at the forefront of efforts to understand and treat this condition. The University of Rochester Batten Center (URBC) is designated as a Center of Excellence by the Batten Disease Support and Research Association (BDSRA), highlighting its commitment and expertise in advancing both research and treatment for this disease. In 2020, when the National Institute of Child Health and Human Development (NICHD) designated the University as an IDDRC, the disease became the Center’s principal project, and researchers identifying biomarkers to evaluate the effectiveness of experimental treatments became a renewed focus for faculty at the Medical Center. Foxe’s latest research, published in the Journal of Neurodevelopmental Disorders, is one example of how the IDDRC designation is transforming the IDD research landscape at the Medical Center.