March is National Intellectual and Developmental Disabilities Awareness month, and for many children and adults with intellectual and developmental disabilities (IDD), finding appropriately curated educational and healthy lifestyle material with support from a compassionate medical team can be challenging. However, thanks to the efforts and vision of two medicine-pediatric primary care physicians from the Indiana University School of Medicine and Riley Children’s Health, Mary R. Ciccarelli, MD, and Katharina M. Weber, MD, a new platform is changing the way those in the IDD community can take better charge of their own health and lives.
In 2025, Ciccarelli and Weber were awarded the Bantz Community Fellowship Award for their project, Indiana Complex Care Coordination Collaborative – Preventive Care for People with Intellectual/Developmental Disabilities. The project leveraged a collaboration between the IU School of Medicine and Special Olympics Indiana to create 4ourhealth.org, a free online resource for the IDD community to explore important self-care and health information. Now Ciccarelli and Weber are continuing their efforts to provide exceptional care to the IDD community by increasing the accessibility of health education to patients and caregivers and by delivering helpful adaptive care tips to healthcare providers.
“This project is a compilation of efforts to support both patient and clinical learners in accommodating healthcare delivery for patients with IDD. It reflects collaborations across the country and within our own community. Our teamwork between self-advocates, medical students and faculty add clarity and a real-world functionality to the work. This next step afforded by the Bantz award will help us refine what we have done to date, fueling our aspirations for better usability and long-term health improvements,” Ciccarelli stated in IU’s announcement of the award.
Ciccarelli is the Morris Green Professor of Pediatrics and director of the Indiana Complex Care Coordination Collaborative (IC4). Midway into her career as a primary care medicine-pediatrics doctor, her colleagues began to ask her for help with the transfer of children, particularly with disabilities, from pediatric to adult care.
“As I started doing more of that work, the need for more tailored and accommodated care for persons with intellectual and developmental disabilities presented itself as a significant issue,” Ciccarelli said.
Self-advocates and caregivers frequently express that finding knowledgeable and adaptive clinical teams who work well with them remains incredibly difficult. Ciccarelli explained that despite the existence of services designed to address many of the needs for persons with IDD, “navigating the system and finding the right services to meet the individual’s needs is difficult.”
This budding awareness of the IDD community's unmet needs led Ciccarelli and other team members to create innovative care solutions, subsequently leading to the development of IC4. The team is seated within the IU School of Medicine Division of General and Community Pediatrics as an interdisciplinary group of doctors, nurses, social workers, family representatives and researchers whose mission is to improve the quality of life and access to care for Indiana patients with high needs. The mission is approached by applying proactive, relational, and quality improvement team-based principles to provide person-centered care within a two generational model which addresses comprehensive and life-course needs and community-based cross-sector partnerships.
Weber, an assistant professor of medicine and pediatrics, is an assistant medical director at IC4. For Weber, caring for pediatric and adult patients in the IDD community came naturally to she was raised in a family attuned to those with special needs. Her parents met while working at a camp for individuals with special needs, and her mother worked as a social worker caring for children with special needs.
Often, people in the IDD community explain that they have had poor experiences with other providers in the past and are grateful for the positive experiences they have with physicians like Ciccarelli and Weber. For this reason, Weber is grateful to offer exceptional care to patients and caregivers who have struggled to receive a high standard of medical care.
“They appreciate the care that I can provide for them and the perseverance I have in helping make sure they get connected where they need to be,” Weber said. “The system is hard for people with medical complexity and then extra hard for those with intellectual and developmental disabilities."
Numerous services and resources have been developed to improve the quality of life for the IDD community. Services such as physical, occupational and speech therapies, as well as music and developmental therapies can help individuals get out into the community and improve their physical and emotional well-being. Organizations such as Down Syndrome Indiana and the Special Olympics Indiana build communities of support which promote connections and build leadership and confidence in members.
Another way members of the IDD community can build independence and confidence is by enjoying educational materials that are created specifically with them in mind, which was a prime objective for Ciccarelli and Weber moving forward with the creation of 4ourhealth.org. The website is an educational resource for people with IDD to explore healthy habits, navigate healthcare and manage chronic illnesses. Additionally, the connected YouTube channel hosts explanatory videos to help prepare patients for standard medical procedures.
“We have multiple different videos that allow people to get experience ahead of time for what to expect,” Weber said. “Those have been somewhat helpful. It's now just a matter of how we get the information distributed, so it is universally known and used.”
The team is interested in gaining feedback on the website from community members to make it more user-friendly and effective. The team is also in the process of creating and administering a curriculum intended to educate medical residents on how to provide better care for the IDD community. The current program delivers a light touch curriculum of informative bi-weekly emails to pediatrics residents and their preceptors on the IU Indianapolis campus, with plans to expand to other campuses as well as into the medical school curriculum.
“In care of adults with IDD, it’s important as a provider to recognize that the individual is the person being treated. As such, the individual should be acknowledged first and involved in all conversations,” Weber said. “They should be the first historian and allowed to indicate if they want someone else to speak for them. They deserve direct eye contact, touch and ability to answer for themselves.”
The efforts of the IU School of Medicine IC4 team are helping pave the way for exceptional care in the IDD community. Ciccarelli explained that her hope is for her team’s work “to help empower persons with IDD to speak up for themselves and build their comfort and confidence to work on being healthy and get the healthcare they deserve.”
Residents interested in receiving the light touch model curriculum or IDD community members interested in providing feedback on 4ourhealth.org should email Ciccarelli and Weber.
