Human Services Research Institute | Enhancing the Well-being of Adults with Intellectual and Developmental Disabilities

Recent health reforms in the USA have encouraged the participation of patients in decisions about the services they receive. For people with IDD, such person-centered approaches result in services tailored around their preferences, ultimately supporting them in achieving their life goals. These health policies have also been facilitating the participation of all people with disabilities in society.

Nilüfer Isvan, Alexandra Bonardi, and Dorothy Hiersteiner at the Human Services Research Institute in Cambridge, Massachusetts, recently studied the effects of person-centered approaches on the health and well-being of adults with IDD.

They analyzed data collected between 2018 and 2019, as part of the National Core Indicators In-Person survey. This survey obtained information from 22,000 adults who were accessing long-term supports and services from their state’s developmental disabilities agencies.

These agencies provide people with a case manager, who guides them in identifying their goals and support needs, and in accessing home and community-based services. Home and community-based services are those that support people to integrate into their community, as opposed to supporting them in segregated settings. Such services include support for independent living, employment, building relationships, and accessing healthcare.

The survey asked adults about their goals and unique needs, while also gathering their perceptions about services they accessed and how these services affected their lives. By analyzing the survey responses, Isvan, Bonardi and Hiersteiner wished to better understand the effects that person-centered approaches had on people’s life satisfaction.

They found that the attentiveness of case managers to individual preferences greatly influenced the overall outcome of services. In other words, if people felt that their case managers were responsive and took their needs into account, they were more likely to be satisfied with the services, reporting improvements in their health and well-being.

The researchers also found that greater attentiveness and person-centered approaches helped people to feel that they had control over their lives and were more included in their communities.

This recent study by the Human Services Research Institute confirms the benefits of person-centered practices for improving the lives of people with IDD. It also pinpoints specific elements of person-centered services and supports that are particularly beneficial, including the attentiveness of case managers and people’s active participation in developing their service plans.

These findings could inform the development of increasingly effective services for individuals with IDD, as well as training programs for case managers and other service providers.