UMass Medical School studying patterns of health care use among people with intellectual disabilities

April 13, 2015

Massachusetts is one of five states using Medicaid claims data to study how people with intellectual disabilities are using health care services. The study led by UMass Medical School aims to improve the health and well-being of this population and understand their health care patterns.

The Eunice Kennedy Shriver Center has received a grant from the Association of University Centers on Disabilities to examine data from MassHealth, Massachusetts’ Medicaid program, to determine the types of health care used by people with intellectual disabilities. The grant is in partnership with the Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities.

“People with intellectual disabilities may have trouble communicating when they’re not feeling well and this can present challenges in identifying symptoms of illness in the early stages,” said Emily Lauer, MPH, interim director of the Center for Developmental Disabilities Evaluation and Research at the Shriver Center. In some cases, this can lead to the need for emergency care, which is more expensive and may be uncomfortable for individuals with intellectual disabilities because it is an unfamiliar environment.

UMass Medical School, in collaboration with the Massachusetts Department of Public Health, will study the diagnostic codes associated with medical claims to learn which Medicaid members have an intellectual disability and to ascertain which health conditions they are being treated for, where this treatment is being provided, and the costs associated with their use of health care services. Individuals with disabilities comprise about 15 percent of the population covered by Medicaid and about 42 percent of the total Medicaid costs. Claims data and diagnostic codes have not been widely used to identify the health issues of individuals with intellectual disabilities. The project aims to improve the health and well-being of those with intellectual disabilities by identifying disparities.

Researchers hope to establish a standardized way of examining the health care usage of individuals with intellectual disabilities, said Monika Mitra, PhD, associate professor in UMass Medical School’s Department of Family Medicine and Community Health and a research scientist within UMass Medical School’s Disability, Health and Employment Policy unit.

More is known about the health care issues of individuals with intellectual disabilities who are supported by state disability services in community homes with round-the-clock paid staff than those who are living independently or with their families.

“We don’t really know much about the health of the complete population with these disabilities, including the conditions that affect them, how they’re using health services, and how best to plan for their health care needs across the state,” Lauer said.

The study will involve people with a range of disabilities, from those who may be able to seek their own health care, to those who cannot verbally communicate.