What is an IDD?
Intellectual and developmental disabilities (IDD) impact over 8 million Americans.
Learn about the range of intellectual and developmental disabilities and the University of Rochester Medical Center’s efforts in understanding, improving, and providing specialized care.
What is IDD?
Intellectual and developmental disabilities (IDD) refers to a group of conditions that begin during the developmental period and typically continue life-long. These disabilities can affect how a person thinks, learns, and interacts with others. The two main types are intellectual disabilities and developmental disabilities.
Intellectual and developmental disabilities
Countless intellectual and developmental disabilities vary in many ways. It is important to understand that the term “IDD” is not a one-size-fits-all. Each person benefits from personalized, comprehensive care to address their needs.
Developmental disabilities are chronic conditions that can affect many areas of a person's life, such as:
- Mobility
- Learning
- Language
- Independent living
Intellectual disabilities are a specific type of developmental disability. It involves problems with general mental abilities that affect functioning in daily life including:
- Learning
- Problem-Solving
- Communication
- Self-Care
What causes IDD?
The exact cause of intellectual and developmental disabilities is often unknown. Some possible causes include:
Neurological disorders & development
What happens during development that impacts the severity of a neuro-developmental disorder?
- Genetic Conditions: Changes or mutations in genes or chromosomes.
- Problems During Pregnancy: Infections, malnutrition, or exposure to harmful substances.
- Complications at Birth: Premature birth or lack of oxygen during delivery.
- Infections and Injuries: Serious infections or injuries in early childhood.
Living with an intellectual and developmental disability
People with IDD can lead fulfilling lives with the right support. This might include:
- Special Education: Tailored learning programs to help children with IDD.
- Therapies: Speech, occupational, and physical therapy to develop skills.
- Support Services: Help with finding jobs, living arrangements, and social activities.
Those with IDD are a traditionally underserved population, with approximately 19,000 people affected locally, 120,000 regionally, and 200 million worldwide. Continued research and efforts toward providing specialized, comprehensive care can help address barriers in the IDD community and help people reach their full potential.
How we’re making a difference
The University of Rochester Medical Center is one of eight organizations with all three NIH-supported programs related to intellectual and developmental disabilities:
- Intellectual and Developmental Disabilities Research Center (UR-IDDRC)
- University Center for Excellence in Developmental Disabilities (UCEDD)
- Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
Intellectual and Developmental Disabilities Research Center
In 2020, the University of Rochester became one of 15 nationally recognized IDDRC’s. Through a concerted effort across basic, translational, and clinical investigators, it aims to provide actionable clinical solutions for our IDD community. The center, part of the Del Monte Institute for Neuroscience, consists of four scientific cores that enhance access to resources, equipment, data, and expertise, advancing research at the University in new ways.
The Strong Center for Developmental Disabilities
The Strong Center for Developmental Disabilities is the University Center for Excellence in Developmental Disabilities (UCEDD). The center collaborates with the community of people with disabilities and their families to create a world in which people of all ages with IDDs are valued and respected. It provides resources to support people with IDDs so they may lead self-determined lives in the community of their choice and have the opportunity to contribute to that community and society at large.
Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
The LEND program offers collaborative interdisciplinary training focused on improving children's health with neurodevelopmental disabilities and special healthcare needs. Our LEND program is 1 of 60 nationally and the only program serving Upstate New York.
Golisano Intellectual and Developmental Disabilities Institute
In June 2024, we announced a $50 million gift from Tom Golisano to build the Golisano Intellectual and Developmental Disabilities Institute at URMC.
The new world-class transdisciplinary center will provide solutions to the health and quality of life issues that affect people with IDDs.
Specialized Care in Pediatrics
We provide evaluation and specialized healthcare for children with developmental challenges. Our multidisciplinary team is committed to improving the health and well-being of children, youth, and families affected by developmental and behavioral disorders.