Personal Story

Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

Caring for People With IDD:
Where is the Outrage?

Author(s)

Melissa L. Desroches is a nurse educator in the College of Nursing and Health Sciences at University of Massachusetts-Dartmouth. She may be reached at mdesroches@umassd.edu.

Sarah Ailey is a nurse educator in the College of Nursing at Rush University, Chicago, Illinois. She may be reached at Sarah_H_Ailey@rush.edu.

Kathleen Fisher is a nurse educator in the College of Nursing and Health Professions at Drexel University, Philadelphia, Pennsylvania. She may be reached at kmf43@drexel.edu.

Judith Stych is a nurse consultant with the Wisconsin Department of Health Services, Madison, Wisconsin, and president of the Developmental Disabilities Nurses Association. She may be reached at jscddn@charter.net.

In spring 2020, we collaborated on a research project to assess the challenges faced by nurses caring for people with intellectual and developmental disabilities (IDD) in the early stages of the COVID-19 pandemic, and how those challenges affected people with disabilities. In a subsequent article published in Disability and Health Journal, we reported results from a survey of 556 nurses that showed a startling absence of public health guidelines for people with IDD and an equally startling exclusion of nurses specializing in IDD from pandemic response and planning. (Desroches et al., 2021).

A white woman and her adult son look down at a camera for a selfie. The woman is smiling and wearing dark glasses and the man has a mustache and beard.

Sarah and Joe Ailey at Sarah’s home. 

Nearly a year after beginning this project, we met as a group to share our personal experiences and views on how the pandemic response has progressed, and what steps are needed to improve care now, as well as in future pandemics. While each of us comes to this task from a different personal perspective – two of us have relatives with disabilities, for example, and we live in different parts of the county – we share a common bond as nurses to advocate for people with IDD who are at high risk for poor outcomes resulting from the pandemic.

It was shocking in those early days that one of the first actions many hospitals took was to ban all patient visitors, with no regard for people with disabilities who need support persons by their side in order to make informed medical decisions. In June 2020, the Office of Civil Rights at the U.S. Department of Health and Human Services reiterated that federal law requires hospital policies to ensure patients with disabilities can have the support they need, but these early reactions were not a promising start to the pandemic.

Another obstacle has been the fear many families of people with disabilities have experienced when they do encounter the health system. We’ve heard stories of nurses who are fearful of bringing people with IDD to health facilities because access to a ventilator might be denied if one was needed during hospitalization.

As the mother of an adult son with IDD who lives in a group home, I (Sarah Ailey) experienced a lot of the disruption and difficult choices that so many other families have faced in this pandemic. It was clear the night of March 12, 2020, that the world was not going to be the same, and it was also clear that no one had a comprehensive plan, so I picked up Joe that night from his group home and brought him to our home. After a while, we were told we needed to bring him back to avoid losing his state funding, so we did.

Then in midsummer, Joe was vomiting due to some medication complications, and the staff at his home wanted to bring him to the emergency department. At that point I came and brought Joe back to our home and we were able to address the health situation causing the vomiting without going into the emergency department. After another six weeks, we were told he needed to come back within 60 days, again due to funding issues. So back he went. In November, with cases surging in Illinois, Joe and many others living in similar situations got COVID-19. Fortunately, he did not have serious symptoms.

Many families, of course, lost loved ones or dealt with severe symptoms, and as nurses with collective decades of experience in other disasters, we know the all-too-familiar patterns.

After Hurricane Katrina in 2005, I (Kathleen Fisher) went to the Gulf Coast as a volunteer and the chaos was profound, particularly for people with disabilities. There was a sense that there was just no planning beforehand and none was being done amidst the disaster, and it felt very much like what we are still seeing today.

A mother delivers a box of snacks to her adult son in his group home. Both are wearing masks. The mother is turned away from the camera, looking at her son. She is wearing a white blouse. The son, wearing a blue short-sleeved shirt, looks at the camera as he holds the box of snacks.

Sarah brings supplies to Joe’s group home during COVID-19.

From our survey, we know there was a lack of understanding and representation of people with disabilities in the healthcare setting in the early stages of the pandemic. Though there are some initiatives to teach more health professionals about working with people with disabilities, the majority of us didn’t learn enough about disability in nursing school, and this showed in the profession’s response to the pandemic.

Our survey also showed that states were on their own to come up with policies, and there were no clear guidelines for nurses. Further, these nurses were not being asked what they or people with IDD needed. From a practical standpoint, people with IDD are so devalued that personal protective equipment, sanitizers, and other supplies for group homes were being diverted to other places. Nurses caring for people with IDD felt so alone, like they weren’t even real nurses.

Even when we have tried to promote the results of our survey within the nursing profession to advocate for better care policies, we have struggled to get any attention for this issue.

As someone with extended family members with IDD, I (Melissa Desroches) found that another challenge both in the study we did and in my family was the disruption in routines as day programs closed and residential home policies shifted. Food was even a major issue. Hording food as a sense of security was common, raising all kinds of health concerns. And the lack of ability to get outside for fresh air and exercise led to aggression and challenging behaviors, understandably.

As a group, we would love to be optimistic and say there have been key lessons learned from all of this, and it certainly has elevated disaster planning as an issue of focus for the disability community. On a wider scale, however, these calls get lost in the cacophony of the pandemic.

It is essential to recognize the bias in the health system and continue to educate health professionals in person-centered care and support of people with IDD. Time and again, when we provided personal experience opportunities between nursing students and people with IDD, students gained a better understanding of the life experience and personhood of people with IDD beyond the health care setting, and that has been a key component to meaningfully affecting bias and change. We must develop more opportunities for natural interactions outside of the acute clinical setting so we can learn from each other.

This pandemic could be a genesis of change, much like the shocking discoveries at Willowbrook led to widespread de-institutionalization of people with IDD. In health care right now, however, there is no real sense of outrage about what’s going on, and that needs to change.

None of Us Want to Stand Still | The video highlights the challenges that people with intellectual and developmental disabilities face in the health care system and presents solutions that have been implemented at Rush University Medical Center and Georgetown University Center for Excellence in Developmental Disabilities.

References

  • Desroches, M. L., Ailey, S., Fisher, K., & Stych, J. (n.d.). Impact of COVID-19: Nursing challenges to meeting the care needs of people with developmental disabilities. Disability and Health Journal, 14(1). https://doi.org/10.1016/j.dhjo.2020.101015