Care Coordination Models Improve Quality of Care for Adults Aging With Intellectual and Developmental Disabilities

Abstract

A significant gap remains between existing evidence-based care coordination techniques for the general population and those that have been successfully translated for people with intellectual and developmental disabilities (IDD). Two models funded through the Health Care Innovation Awards have dedicated resources to the translation of evidence-based practices in community or clinical settings. This study analyzes quasi-experimental mixed-methods evaluation data, including Medicaid/Medicare claims on more than 600 beneficiaries who participated in the two models and survey data, site visits, and focus groups with participants and caregivers. Qualitative data suggest that both models address key contextual factors, considering residential setting, health disparities, and heterogeneity of the population. We identify key improvements in health care quality related to timeliness, patient safety, and medication reconciliation. In addition, both models show some evidence of reduced claims utilization. This study represents the first step to understand the potential of care coordination to improve the lives of adults aging with IDD. As health systems continue to struggle to manage the cost of their most expensive users and deliver high quality care, these models hold promise as vehicles to reduce utilization and cost among adults who have lived long-term with disability by addressing their unique health care and social needs.

Primary Care of Adults with Intellectual and Developmental Disabilities Clinic: Coordination of Care Challenges

“…The RN is a critical part of the team and provides the support that physicians and patient families need for the best medical care possible. 9 In the case study presented earlier, the coordination of complex care would be impossible without an aligned team. The aligned team consists of the primary physicians and specialists, including neurology, gastroenterology, psychiatry, and cardiology; nurses; occupational therapists; physical therapists; pharmacists; and dietitians.…”

“…The RN is essential in communicating with patients’ families; coordinating complicated schedules with medical facilities and families; accessing necessary durable medical equipment for patients; corresponding with group homes; and organizing the necessary paperwork for medications, living facilities, durable medical equipment, and other needs that arise. The RN is a critical part of the team and provides the support that physicians and patient families need for the best medical care possible 9 …”

Strategies for Accessible Breast Screening for People With Intellectual Disability

“…To date there has not been an evaluation of the role of a centralized liaison officer, nor more broadly care coordination, in improving access to breast screening services for people with intellectual disability. However, work by Ruiz et al 40 suggest the potential benefits of health care coordination to the individual and health care system. These benefits included, for example, timeliness of care, patient safety, and reduced claims for health care use.…”

Challenges and adaptations of an intermediary: an exploration of support coordination in the Australian National Disability Insurance Scheme

“…For people with disability and complex needs, it should optimise service provision coordination and reduce the risk of inadequate and inefficient services. If appropriately designed and performed, support coordination should lead to: better understanding of individual need; informed choices about appropriate providers; stronger relationships and communication with service providers; enhanced formal and informal support connection; and a greater sense of participant control (Liabo et al, 2001;Sloper et al, 2006;Madden et al, 2014;Ruiz et al, 2019). Australia's National Disability Insurance Scheme (NDIS) includes funding specifically for a support coordinator where the NDIS participant has complex needs (Productivity Commission, 2011).…”