If you have a family member, friend or colleague who lives in a nursing home or other congregate care setting, you likely are concerned about recent reports of large percentages of COVID 19 related deaths occurring in these facilities.
We’re concerned, too, and find these reports very hard to read and hear about.
We already know there are significant differences in health outcomes for people with IDD, and they are more likely to have co-occurring chronic health conditions. There are also disparities in access to health care for this group of people. For all of these reasons, they are at greater risk of contracting and having serious complications from COVID19.
As more data is collected about how people with IDD are affected, we must commit to using person-centered approaches when thinking about options for community living as we move forward from the initial stages of the pandemic.
We must ask the person with the disability (not just their guardians or family) where they want to live and what they want to do during the day. If they are in a group home or other congregate place, we need to ask them whether or not they are happy there and if they want to live there or in a different type of community living arrangement. We cannot assume that because someone has lived in their group home or worked in a day program for a long time that they want to stay there. Conversely, we cannot assume that if they live in a group home or work in a day program, they want to leave it. We have to ask them what they want and honor their choice.
Most of the 1.3 million Americans receiving long-term services and supports receive those services in their own homes or their family homes, but roughly a quarter of them live in group homes. Across these settings, a patchwork of approaches from states and providers within those states means people with IDD receiving services are not necessarily getting the same protections and interventions. Many are not going to work or day programs, some are working more hours as essential employees and others are working from home. Their support staff may or may not have access to personal protective equipment and may or may not be working with people infected with COVID19 and then going to another place and working with people who are not infected. In most programs, family members and friends are not allowed to visit people who are living in a congregate care. Yet, in others, they are allowed to see family.
Moving forward, we need a much more consistent, proactive and planned approach to facing such emergencies. Preventive procedures should be available and consistently implemented. More important, we need to continue our efforts as a nation to promote community living and participation for all people with IDD, ensuring their wants and needs are the focus of services and supports and get met.
We need to ensure people with IDD have the opportunity to make informed choices about where to live. For many, a group home isn’t viewed as their “own” home. For example, most people have keys to their own home and many times in a group home people are not given their own keys for access to the house and all areas within the house. Often, when someone lives in a group home, they live with people they do not know. They join people who already live there or are part of a group that has been chosen by others. In your own home, you get to choose with whom you live and are not stuck living with people you do not know. In your own home, you can live by yourself, with a friend or with your husband or wife or life partner. Often, in a group home it is the staff who says who can come over and when that can happen. In your own home, it is up to you to decide who comes over and when. In a group home, staff members plan activities based on the needs and wants of everyone who lives there, and staff are not always available to make sure the activities in which you want to participate happen. In your own home, you mostly get do what you want as long as you have the time and resources to do so.
While we work to promote living arrangements that offer people with IDD the best chance to live lives of their own design, we also recognize there may be a variety of settings where this can happen. This pandemic has shaken our routines and worsened many of the disparities people with IDD endure. As we recover, we are hopeful that all people will have a choice about where and with whom they live and what they do during the day.
Co-authors:
AUCD Policy Talk 