Breaking Barriers
The division of Developmental and Behavioral Pediatrics (DBP) in the Department of Pediatrics at Golisano Children’s Hospital houses the largest program in Upstate New York that offers comprehensive care to children with intellectual and developmental disabilities (IDD), serving nearly 10,000 patients each year from across New York and Pennsylvania.
DBP cares for children with developmental or behavioral conditions including autism spectrum disorder, ADHD, cerebral palsy and genetic disorders. And clinical diagnosis and management is just one aspect of its services. From providing guidance to families on caregiver strategies and coordinating with schools for needed learning accommodations, to facilitating transitions from school-based services to adult care systems, GCH DBP professionals can improve a child’s quality of life while supporting families in the face of complex challenges. The division’s multidisciplinary clinical care teams—which include fellowship-prepared pediatricians, nurse practitioners, psychologists, dieticians, and others—collaborate extensively with embedded family navigators, specialists who are focused on addressing barriers to care and connecting families with resources for additional support.
A family navigator is “a dream come true,” says Sarah Milko, mother of a child with autism and CEO of AutismUp, a community service organization. “It’s extraordinary here in Rochester,” she says. “We have smart and compassionate medical services along with Tom Golisano’s commitment to disabilities. A group from Switzerland recently visited the clinic here in Rochester, and their minds were blown.”
“A child with complex issues requires a comprehensive treatment plan that includes family support,” says Lynn Cole, DNP, RP, PPCNP-BC, Director of Clinical Services and Associate Division Chief. “If you go to other medical specialties for care, they likely won’t ask about friends and social interactions. But the social piece is critical to the overall wellness of a child with developmental disabilities. We recognize that treatment doesn’t end with a medication prescription—you have to also address ongoing functioning and well-being.”
“We view our work in the context of social justice; we are affirming the lives of disabled persons,” says GCH DBP Division Chief Dennis Z. Kuo, MD, MHS. “Individuals with disabilities have a right to live in their communities and receive the same services that are available to everyone.”
In addition to providing clinical services, the division also trains a cadre of interdisciplinary professionals who work with the disability community. And its researchers are at the forefront of advancing knowledge to better understand and improve care for individuals with intellectual and developmental disabilities.
URMC is one of only eight institutions nationwide earning all three federal designations related to IDD care: University Center of Excellence in Developmental Disabilities (UCEDD) and Leadership Education in Neurodevelopmental and related Disorders (LEND), which both operate under the Division of DBP, and the Intellectual and Developmental Disabilities Research Center (IDDRC) in the Department of Neuroscience.
The division has one overarching message to parents and children: You are not alone; we are here to help.
“Families across the region trust our DBP team not only because of the exceptional clinical care that has transformed outcomes for children,” said Jill Halterman, MD, MPH, Golisano Children’s Hospital’s Physician-in-Chief, “but also for the team’s long-standing history of partnership with the community to ensure families have access to the critical resources and support they need to care for a child with complex needs.”
The Rochester Effect
For more than 75 years, URMC has been advancing the knowledge and treatment of IDD. It was here in 1977 that psychiatrist George L. Engel developed the biopsychosocial model, an approach to medicine based on the assumption that health and illness are consequences of the interplay of biological, psychological and social factors.
The division has embraced the biopsychosocial model by training more than 3,000 professionals in various disciplines to provide comprehensive care and services for patients with IDD and by offering a wide range of family services. In addition, the division garners more than $4 million yearly in research funding to foster continued growth of the field.
Both URMC and GCH IDD care received a boost in June when philanthropist Tom Golisano committed $50 million to build the Golisano Intellectual and Developmental Disabilities Institute. These additional funds will help accelerate services for the IDD population, estimated at 19,000 locally and 120,000 throughout the region.
“Having resources for individuals with IDD in one place will massively improve care delivery,” says John Foxe, PhD, director of the new Institute. “The Developmental and Behavioral Pediatrics division is pivotal to the IDD community. I am excited to have their talent and expertise working alongside our other providers and researchers in this new institute. What happens here will inform medical advances and impact lives across the globe.”
The Centers for Disease Control and Prevention estimates that one in thirty-six children have autism, while one in six children have an intellectual or developmental disability. Susan L. Hyman, MD, who served as DBP division director from 2008 to 2022, notes in her book chronicling URMC’S history of IDD services (A History of Developmental and Behavioral Pediatrics at the University of Rochester: 1947–2019, co-authored with Philip W. Davidson, PhD, DBP’s inaugural division director) that much progress has already been made for this population. She remembers when people with disabilities were “marginalized, criminalized, and abused.”
Nevertheless, challenges for the IDD population remain. It is expensive to fund clinical services for the increasing numbers of children with IDD, and healthcare staffing shortages are expected to worsen in the coming decades. Community and government resources can often be difficult to access, so more advocacy is needed to overcome communication, physical, educational, and social barriers. Fortunately, the Monroe County region has a strong network of support, according to Kuo.
“It’s phenomenal here in Rochester,” says Kuo. “In fact, families move to Rochester from different states because they recognize that care is more integrated here, and there is support from schools and recreational programs. I’ve seen children blossom after moving to Rochester, and some have even been able to discontinue medications they no longer need. There is still a lot of work to do, but it’s amazing to see these successes.”
Brittany and Barry Jencik of Penfield attest to the value of GCH DBP. They have 21 children; four of their seven biological children are on the autism spectrum, and all 14 of their adopted children have special needs.

“I could not do what I do without the support of the clinic. It builds a safety net, and we need that,” says Brittany. “DBP does a great job of tailoring treatment to my children’s individual needs.”
Receiving a diagnosis of autism is a life-changing experience for parents, and Brittany recalls that the DBP clinic’s Nurse Practitioner, Lorna Patanella, “did not give up on my son and kept trying different solutions,” Brittany says. “He’s in a great place now and is a senior at RIT.”
An Early Leader
In the late 1940s, URMC emerged as a pioneer in the shift away from hospital care for children with IDD. Autism was not well understood at the time and treatments were limited. Under the leadership of Robert J. Haggerty, chair of the Department of Pediatrics from 1964 to 1975, community-based care became a major focus. This work was expanded by later DBP division chiefs Davidson and Hyman.
National milestones aided the movement: In 1963 President Kennedy signed the first major legislation addressing the needs of the disability community, followed in 1990 by the passage of the Americans with Disabilities Act, making it illegal to discriminate against people with disabilities in employment, access to medical care, and everyday activities.
When Stephen Sulkes, MD arrived at URMC in 1984 he was the only physician in the clinic. Sulkes and Hyman, both of whom will retire this year, were instrumental in building the program. Also instrumental were the late researchers Tristram Smith, PhD, “a quiet genius who was a major force behind behavioral intervention,” and Patricia Rodier, PhD, whose research proving genetic and environmental links to autism early in pregnancy “put Rochester on the map,” Hyman says.
By 2006, the division had grown from a small program within pediatrics to an internationally renowned division—with 98 faculty and staff offering an array of services and garnering millions in donations to fund research, fellowships, and professorships. And in 2017 it opened the William and Mildred Levine Autism Clinic, dedicated to providing integrated autism-related services.
“I’m proud of what we have accomplished,” says Hyman. “Rochester is right there at the cusp of the next step.”
The Clinic
The waiting room at the Levine Autism Clinic is not the typical sterile clinical space. Rather, it looks more like a children’s room at a library, specifically designed to promote a visually and aurally soothing environment for kids with sensory sensitivities.
Decals of green leaves dot the floor. Huge windows fill the room with daylight. There are no brightly colored posters of polka dots, which are typical staples of pediatric waiting rooms. Instead, the pale yellow walls are bare, and the only sound is occasional laughter or quiet conversations. Cartoonishly shaped chairs in green and blue smooth vinyl are arranged caterpillar-like throughout the room.

During a recent visit, a girl dressed as a fairy for Halloween flitted about the room. Other patients played with the large sensory board attached to one wall. A separate sensory room with shifting colors on a tall tube of bubbly water is available for patients who need a quiet space. A library staffed by a family navigator assists parents with community resources. A teen room and a “club” room offer private spaces.
Exam rooms are equally serene. Murals of floating hot air balloons occasionally appear on the mostly bare walls. Knobs and light switches are hidden inside cabinets, away from curious patients. Separate rooms offer privacy for meetings and training sessions, including a feeding room where children who have very selective preferences learn to tolerate the colors and textures of a variety of nutritious foods. Even the clinic’s location in a stand-alone building on East River Road is a feature beneficial to patients, as a visit to a clinic located in a busy hospital setting can present unique challenges to children with sensory sensitivities.
Many of the clinic’s employees have a child with disabilities, so they have a unique understanding of what patients and families are experiencing.
Lisa Latten, clinic administrator and parent advocate, has a son who was diagnosed with autism 15 years ago. She remembers being exhausted by the time they checked in for a doctor’s appointment at the hospital. And then they had to wait in a loud, bright, and sterile waiting room.
“It felt like torture,” she recalls. “He was crying, and I was crying.”
So, when Latten fields calls from parents, she truly understands their concerns.
“When you hear the word autism, you recognize that society isn’t set up for individuals with disabilities,” she says. “It’s about your child, so your emotions run high. I truly have compassion because I can see myself in the parents.”
Education
Children with IDD interact with numerous professionals, including nurses, teachers, and dentists, so DBP’s Leadership Education in Neurodevelopmental and related Disorders (LEND) program focuses on training both healthcare and other professionals on how to best serve this population.
“Aside from training as many people as possible, we want to affect curriculum more broadly,” says, program director of LEND and director of the Behavioral Interventions for Families Clinic. “It is critical for all professionals who interact with children to have an understanding of disabilities.”
The LEND program trains several hundred fellows annually from many disciplines, including educators, nurses, dentists, doctors, social workers, and community advocates. Through these trainings, professionals in each discipline learn how to better serve individuals with developmental disabilities. Dentists, for example, learn to adapt examination rooms using strategies such as dimming the lights to better accommodate children with sensory sensitivities.
Through this program, healthcare providers also learn that flexibility is key, because getting to an appointment, particularly via public transportation, can be especially complicated, with some families traveling four hours or more.
“We serve people with developmental disabilities best when we remember to meet them where they are, without preconceived notions. We should do the same for every person we meet,” said Abigail Kroening, MD, associate professor, director of DBP medical education, and program director of the ACGME DBP fellowship.
LEND training also includes sessions on policy and legislative advocacy—because systems change is crucial, says Silverman. To better understand the lived experience of those with disabilities and more effectively advocate for positive change, fellows are connected with a family to learn firsthand what living with a disability in Rochester entails.
LEND is one program that is slated to get additional support through the Golisano Institute and will continue to make a major impact toward training a robust future generation of caregivers for children with IDD.
For Silverman, the greatest benefit of working with disabled children is the opportunity to celebrate who they are. “I appreciate the individual,” she says. “I meet kids with disabilities who have amazing abilities. I work with them to capitalize on those abilities and ensure they have a productive and happy life that is meaningful to them.”
Research
Suzannah Iadarola, PhD, had planned, as an undergraduate student, to be a ”traditional” clinical researcher. Then an experience working with community partnerships shifted her focus. “I fell in love with the community model,” she says. “It derailed in the best of ways my plans for research.”
Iadarola is the director of Strong Center for Developmental Disabilities, which is part of the UCEDD national network advancing policies and practices to improve the health, education, social, and economic well-being of people with developmental and other disabilities. She conducts community-partnered research related to developing, disseminating, and evaluating community interventions to support those with IDD and their families.
“A future that values disabled lives will only be realized to the extent that people in leadership roles share their power with people with disabilities,” she says. “The more that we can stay true to that model, and the more that it’s an expectation and not just a cherry on top will elevate the broad mission.”
Iadarola says she feels especially lucky to have worked with the internationally renowned Smith, who demonstrated that behavior-based interventions help children with autism catch up to their peers in school.
“Tris was more than a professional mentor. Anyone who knew him knows that his lasting effect was his humility and his presence,” she says.
Iadarola is lead investigator on Mind the Gap, an intervention program conducted in collaboration with national partners to improve outcomes for families of autistic children from low-income households. Navigating the system of services can be daunting; this can delay early intervention strategies and negatively impact a child’s long-term outcomes. Parents of children newly diagnosed are paired with experienced parents, and efforts are made to match ethnic and race backgrounds.
“This is a relief to lots of families,” Iadarola says. “You don’t have to explain what it feels like because you are talking to someone who naturally gets it.”
A hospital-based research project with Iadarola and Amanda Laprime, PhD as co-investigators seeks to close a training gap for nurses who have had little or no experience with people with disabilities (covered on page 14).
“Nurses have so much knowledge and skill, but there may be gaps due to a lack of time and resources,” says Iadarola. “It’s about teaching skills and also creating a shared understanding about what the experience is like for people with disabilities when they come to the hospital.”
The Future
The aphorism “the measure of a society is how it treats its most vulnerable citizens” is an apt summary of the mission of DBP: Offer comprehensive services to patients with IDD and reorient society to fully embrace the right of individuals with IDD to thrive and enjoy all aspects of life.
While challenges remain, DBP—through clinical care, education, research, and critical community partnerships—is leading the way to a better future for all children with IDD. “If any community can transform into the ideal place where individuals with IDD can thrive, Rochester can,” says Kroening.