Healthcare access and delivery for people with intellectual and developmental disability in the United States: Policy, payment, and practice considerations

Abstract

Over 7.5 million people (approximately 2% of the US population) with intellectual and developmental disability live in the United States with the vast majority living in the community and accessing healthcare from the general healthcare system. For over two decades, there has been a national recognition that people with IDD experience poorer health outcomes and experience barriers in access to healthcare. We describe the important legal and financial frameworks that influence access to health care for people with IDD in the US, including a summary of major federal laws and insurance programs that have shaped the landscape of health and social care in the community, evolving trends in payment models, and the risks and benefits of these models. Further, we provide a description of health care delivery models which have been developed to support healthcare for people with disabilities including coordinated care delivery models. Clinical training and support for non-clinicians to attend to the particular health care needs of the population with IDD is critical yet is not widely available. Additionally, there remain significant access and quality gaps in healthcare for people with IDD. We conclude with a call for advances in health care quality, access and efforts to advance research and data collection to promote health equity for this population.