Guarding the susceptible, educating the upcoming generation

Guarding the susceptible, educating the upcoming generation

The University of Rochester's Intellectual and Developmental Disabilities Research Center (IDDRC), in partnership with the Mary Cariola Center, has embarked on a significant project funded by the National Institutes of Health's (NIH) Rapid Acceleration of Diagnostics-Underserved Populations (RADx-UP) program. This initiative, launched in 2020, specifically addresses COVID-19 prevention and management for individuals with Intellectual and Developmental Disabilities (IDD).

The Project's Impact

1. Improved Access to COVID-19 Testing: The project aims to enhance access to timely and appropriate COVID-19 diagnostics for people with IDD, a group often facing barriers to healthcare access, including testing. Onsite and mobile COVID testing was provided in schools, alleviating the burden on staff and students.
2. Tailored Communication and Support: Researchers and clinicians provide customized information and support suited to the cognitive and communication needs of individuals with IDD and their caregivers, helping them understand prevention strategies and the importance of testing.
3. Reducing Health Disparities: By targeting an underserved population disproportionately affected by COVID-19, the project aims to reduce disparities in infection rates, disease severity, and outcomes through better surveillance and intervention. In 2020, COVID was the leading cause of death for individuals with IDD.
4. Integration of Community Resources: Collaboration with the Mary Cariola Center, a specialized community organization serving people with IDD, ensures that testing and follow-up care are embedded in trusted, familiar settings, increasing compliance and effectiveness. Many families appreciated the trust factor of having the tests administered at school.
5. Data Collection and Research for Policy: Collecting data on COVID-19 impact and diagnostics effectiveness in the IDD population supports evidence-based public health strategies tailored to these individuals' unique needs. The project's data collection and analysis helped achieve herd immunity at the school, as positive cases were isolated promptly and asymptomatic cases were identified.

The Road Ahead

The team is working on publishing observations from the study to provide substantive information on keeping the vulnerable IDD population safe. The newly minted designation strengthened the long-standing relationship between the Neuroscience community at the University and the Mary Cariola Center. The shared mission of keeping students and staff safe at the medical center and the Mary Cariola Center was a key factor in taking on the project.

Regular Zoom meetings were held weekly to respond quickly and adapt to the fluidity of studying an evolving virus within a school. The University of Rochester's RADx-UP project, in collaboration with the Mary Cariola Center, also collected and considered antibody levels to understand how immunity progressed and changed in both vaccinated and unvaccinated people within the study.

This RADx-UP funded initiative enhances COVID-19 prevention and management for individuals with IDD by improving diagnostic access, providing tailored communication, integrating trusted community resources, and generating critical data to reduce health disparities in this vulnerable population. A non-vaccinated person with an IDD is four times more likely to contract COVID-19 and eight times more likely to die from the virus than someone without an IDD. The study demonstrated that protocols and procedures can mitigate the spread of COVID in the IDD community, with potential broad, lifesaving implications.

1. Health Education and Awareness: The project expanded health education beyond COVID-19, addressing other medical conditions and health topics such as chronic diseases, cancer, respiratory conditions, digestive health, eye health, hearing, and men's health. This multifaceted approach promotes overall health and wellness for individuals with IDD, including fitness and exercise, sexual health, and skin care.
2. Addressing Autoimmune Disorders: With a focus on learning, the project also delves into autoimmune disorders, offering therapies and treatments to manage these conditions and improve the quality of life for individuals with IDD.
3. Promoting Mental Health: Recognizing the correlation between physical and mental health, the project also prioritizes mental health, providing resources for managing stress, anxiety, and neurological disorders.
4. Womens Health Services: Recognizing the unique needs of women with IDD, the project extends services to womens health, offering resources for reproductive health, parenting, and pregnancy care.
5. Weight Management and Cardiovascular Health: The project addresses the link between weight and cardiovascular health, offering strategies for weight management and promoting cardiovascular health to reduce the risk of associated diseases.
6. Medicare Coverage and CBD Use: In the realm of senior health, the project explores Medicare coverage for IDD care and potential benefits of CBD in managing specific medical conditions for the IDD population.
7. Education and Self-Development: Acknowledging the importance of personal growth, the project encourages education and self-development, offering skills training and career development resources for individuals with IDD to aid in the job search and professional advancement.
8. Skin Conditions and Neurological Disorders: The project also tackles skin conditions and neurological disorders, offering treatment options and resources for effective management and care.
9. Aging and Skin Care: As individuals with IDD live longer, the project addresses the unique challenges of aging and the importance of skin care in maintaining a healthy appearance and preventing premature aging.
10. Fostering Personal Growth and Career Development: The project fosters personal growth and career development, striving to create a supportive environment that encourages individuals with IDD to reach their full potential.
11. Lifelong Learning and Adaptability: Embracing the spirit of lifelong learning and adaptability, the project seeks to equip individuals with IDD with the skills and knowledge to navigate changing health, social, and economic landscapes, promoting a prosperous and fulfilling life.

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