Health Equity

Strong Center for Developmental Disabilities (SCDD) recognizes the differences in health status between people with intellectual and developmental disabilities (ID/DD) and those without them. Known as health equity, people with ID/DD often have poorer health than people without disabilities in the areas of obesity, dental, vision, hearing and preventive care. They may also be more susceptible to chronic diseases than people without disabilities. There are many causes of health inequity for people with ID/DD. Medications, access to routine medical and dental care, and preventable secondary conditions related communication are common causes often expressed by people with ID/DD. But other health inequities are a result of social justice issues and inequality. Some doctors and dentists face barriers in providing care for patients with IDD, such as extra time required to care for them, or lack of familiarity with their disability or behavioral needs. Promoting health equity requires an understanding of the causes.

For more than three decades SCDD has worked to understand the causes of health inequity, while creating and supporting programs and projects that promote health equity. Our areas of impact are health, community, research, and information dissemination.

Health Equity Programs

From its earliest days, Strong Center for Developmental Disabilities has been focused on the health of people with intellectual and developmental disabilities across the age span. Our health equity programs for people with IDD include:

• Pre-service training and education to healthcare professionals.
• Providing health screenings in collaboration with Special Olympics Healthy Athletes.
• Developing tools in the URMC electronic health record for providers to use when caring for a patient with IDD.
• Conducting research to identify community healthcare and dental providers who provide care or address other health concerns for people with IDD.
• Advocating for people with IDD to be designated a Medically Underserved Population.
• Collaboration with Transitional Care Medicine to improve inpatient experiences for individuals with IDD.

Health and Health Equity Projects & Initiatives

Children and Youth with Special Health Care Needs

This is a title V project with the office of the Maternal Child Health Bureau. This project is a collaborative effort between the NYS Department of Health, local health departments (LHD’s) and the three University Centers for Excellence in Developmental Disabilities (UCEDD’s) (Strong Center for Developmental Disabilities, Westchester Institute for Human Development & Albert Einstein College of Medicine).

The goal of this project is to positively impact the lives of Children and Youth with Special Health Care Needs (CYSHCN) and their families by assisting Local Health Departments (LHDs) in providing needed and appropriate services.

Improving Family Centeredness Together (IFaCT)

Part of the State Systematic Improvement Plan led by the New York State Department of Health. The project focuses on improving the Early Intervention Program (EIP) experience for families and children.

Learning to De-stress - A Course For Neurodiverse Individuals

In this course you will learn proactive ways to avoid stressful situations, how to identify triggers, how to make personalized goals for meeting goals, and exercises for maintaining mindfulness. This course is intended to be attended by both neurodiverse individuals and members of their care team so that through a mutual understanding of shared information a team can choose what tools they want to implement for life changing results. Course provided in partnership with Mindful Traditions.

Spanish Medical Language Interpreters Project

The goal of this project is to provide continuing education to Spanish Language Medical Interpreters to increase awareness of and address common problems such as communication and language differences that often exist in relationships between providers and Latinx individuals with IDD and their families.

COVID-19 – Vaccine Response

In addition to participating in vaccination clinics focusing on people with IDD in our community in collaboration with the Complex Care Center, SCDD is participating in a collaborative project with the other NY State UCEDDs to encourage immunization of individuals with IDD. This included a survey by the Rochester (Iadarola) and RFK UCEDDs on perceptions on the COVID vaccine for people with disabilities, their family members, and people who work with them. An article was submitted for publication based on this. Sulkes provided consultation to the Cincinnati UCEDD’s Center for Dignity in Healthcare for People with Disabilities on COVID vaccination for people with IDD along with testing and treatment.

Community Collaborations

Wiki Education

The purpose of this collaboration is to provide credible sources of information about IDD for people using Wikipedia. Working with staff members from Wikipedia, a cohort of health disability healthcare scholars, disability healthcare practitioners, and/or disability studies scholars is working to improve the disability healthcare information available on Wikipedia., targeting articles related to developmental disability healthcare. The goal of this project is to become fluent in Wikipedia's tools, adding to already-existing articles, and potentially creating new ones.

Monroe County Language Access Coalition

The goal of this partnership is to improve language access for people who are LEP or who utilize other modes of communication to gain language equity. This network is comprised of a community organizations and providers working together to improve the well-being of residents within Monroe County by promoting language equity.

Greater Rochester Faith & Inclusion Network

The goal of this relationship is to improve the well-being of individuals impacted by IDD and their families by making our faith spaces inclusive. The network is a group of faith leaders looking to share information as well as gain knowledge in IDD and faith. The network has developed a website, Facebook page for individuals looking for information as well as tips sheets for groups looking to include people with IDD.

Common Ground Health Coalitions

The aim of the Health Coalitions (African American and Latino) for Monroe County is to improve the health of ethnic groups and marginalized population throughout Monroe County. Currently these coalitions are working on COVID-19 Vaccine Hesitancy and Equity, Racism as a Public Health Crisis and Chronic Health Conditions within these populations. 

American Academy of Developmental Medicine and Dentistry

The aim of the American Academy of Developmental Medicine and Dentistry is to provide a forum for healthcare professionals who provide clinical care to people with intellectual & developmental disabilities (IDD) and improve the quality of healthcare for individuals with IDD. Every year the University of Rochester AADMD Student Chapter partners with Special Olympics New York to improve health outcomes for athletes participating in the Special Olympics. The chapter also participates in the Spread the Word to End the Word Campaign every year to raise awareness of the hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using it.

Research Projects

AIR-B: Community-partnered research to promote equity for children with autism and their families.

• Principal Investigator: Suzannah Iadarola
• Co-Principal Investigator: Lynne Levato
• Funded by: United States Health Resources and Services Administration (HRSA)
• Lead site: University of California Los Angeles (Kasari).

There are clear diagnostic and service disparities in autism spectrum disorder (ASD) for children who are under-represented based on income, race, ethnicity, and/or geographic location. The Autism Intervention Research Network on Behavioral Health (AIR-B) is a network of researchers seeking to make sure that evidence-based behavioral interventions are effective and available for all children with ASD in our communities. Our work has focused on: language interventions, programs to help promote social relationships in schools, school-based transitions, and programs to support parents following a first diagnosis. All research activities are conducted in collaboration with our community partnership.

PRISM: Interventions to help young children with autism use spoken language.

• Principal Investigator: Suzannah Iadarola
• Co-Principal Investigator: Lynne Levato
• Funded by: Eunice K. Shriver National Institute of Child Health and Human Development (NIHCD)
• Lead site: University of California Los Angeles (Kasari).

Using spoken language early in life is associated with other language, social, and play outcomes for children with ASD. Programs to help young children learn language may include adult-directed and more play-based approaches. The Personalized Response Interventions Sequences for Minimally Verbal Children with ASD (PRISM) study compares two approaches to teaching language for preschool-aged children.

MAAPS: Program for educators to help support students with autism in elementary school classrooms.

• Principal Investigator: Suzannah Iadarola
• Funded by: Institute for Education Sciences
• Lead site: May Institute (Anderson)

There are many evidence-based strategies to help support students in public school classrooms, but it can be difficult to select and combine them in the optimal way. Modular Approach to Autism Programs in Schools (MAAPS) offers a framework for identifying the most important student goals and developing interventions to support progress. We work directly with teachers and other educators through this process.