Federally-legislated Medicaid requirements for recipients with intellectual and/or developmental disabilities (IDD) to have a person-centered plan (PCP) do not specifically require that advanced care plans (ACP) be a component of the plan. However, coronavirus disease 2019 (COVID-19) has provided a salient reminder of the importance of incorporating ACP within the PCP for people who have IDD. As demonstrated by situations arising from COVID-19, emergencies and crises can dramatically alter access to care for people with IDD. This paper synthesizes results from an environmental scan related to ACP for adults with IDD. Findings suggest that the use of ACP, particularly when such planning processes result in the delineation of roles and documentation of preferences, can be helpful in mitigating the impact of these crisis situations on the person with IDD and their caregivers.

Plain Language Summary

People with a disability who receive services from the government for their disability have to have a written plan about their life. Plans for the future do not need to be part of this written plan. However, with the COVID-19 pandemic we see more emergencies that cause big changes to the lives of people with disabilities. During big events like this it can be helpful to have plans for the future written down. In this paper we look at what is known about planning for the future for adults with disabilities. We make suggestions to improve these plans so people with disabilities and their caregivers feel more prepared during a crisis.