Brian Hennen

Healthcare for Persons with Intellectual and Developmental Disability in the Community

Introduction: While there has been impressive progress in creating and improving community healthcare delivery systems that support people with intellectual and developmental disabilities (IDD), there is much more that can and should be done. Methods: This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical considerations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and delivery systems, and the areas of needed focus in their development are reviewed to set a starting point for more and greater work going forward. Conclusion: Today, we celebrate longer life spans of people with IDD, increased attention to the benefits of healthcare that is responsive to their needs, and the development of important healthcare delivery systems that are customized to their needs. We also know that the growing body of research on health status offers incentive to continue developing healthcare structures for people with IDD by training healthcare providers about the needs of people with IDD, by establishing systems of care that integrate acute healthcare with long-term services and support, by developing IDD medicine as a specialty, and by building health promotion and wellness resources to provide people with IDD a set of preventative health supports.

Health Care Transition

Health care transition is defined as the planned movement from a pediatric health care system to an adult-serving health care system during the years of adolescence and young adulthood. Health care transition for youth and adults with intellectual and developmental disabilities (IDD) may be a long and complex process. It is currently frequently unsuccessful due to barriers in both the pediatric and the adult health care systems, resulting in lack of access to appropriate care, worsening of health conditions and function and potentially preventable hospitalizations for the young adult with IDD. Both pediatric and adult health care systems should promote self-determination with respect to health and health care and independence in youth and young adults with IDD. Moreover, health providers should be aware of and refer individuals to social services that can support vocational, independent and other skills needed for transition to adulthood. This requires that health care providers for children and adults become familiar with special services and supports in the school, community and through the state agencies (Medicaid Waiver program) to support transition for youth and young adults with IDD.