Researchers at the University of Colorado Anschutz Medical Campus are working together to improve the lives and health care of the 61 million Americans with disabilities, a number that is expected to increase in the wake of the COVID-19 pandemic.
Through their work, investigators have noted an unusual drop in requests for disability assistance during the pandemic, a lack of knowledge among health care providers who treat people with disabilities, and a lack of clarity in policies designed to improve population health care. Their intent is to fill in gaps that hinder you and more.
“We at the University of Colorado are working very hard to create a world-class group of researchers focused on disability and the impact of disability on patient healthcare,” he said Eric Campbell, PhDProfessor of Medicine and Director of Research at CU Center for Bioethics and Humanities.
With support from the Social Security Administration’s Retirement and Disability Research Centers, Lauren Hersch Nicholas, PhD, MPPand their employees are Examining trends in disability claims and mortality and health outcomes of disabled Americans during the pandemic.
Normally in times of recession and certainly a major health crisis, people tend to turn to disability programs as a source of income, said Nicholas, an associate professor at the Department of Health Systems, Management and Policy In the Colorado School of Public Health (ColoradoSPH). However, this has not been the case for the past two years. In fact, researchers have noticed a reversal of this trend.
“We at the University of Colorado are working very hard on the creation
a world-class group of researchers focused on disability and the
Impact of Disabilities on Patient Healthcare” – Eric Campbell, PhD
“We’ve actually seen a decrease in applications as well as a decrease in applications in the categories where we would expect people to choose alternative income,” Nicholas said.
The decline in disability claims could be due to the closure of disability offices or the sudden shift to remote work, which has allowed more people who would otherwise have claimed disability to continue working, Nicholas said.
As health scientists move to an endemic approach to COVID-19, Nicholas plans to follow up on disability claims after many support programs have expired. She sees room for growth around the collective understanding of the health side of the labor market, she said.
“For the populations I work with, namely the elderly and disabled, there is a strong link between health and labor supply and health and income,” Nicholas said. “Disability status and sources of income influence a person’s decision to retire. Their health and access to healthcare affect their ability to work and their finances.”
Misunderstandings that affect care
Nicholas’ interest in the role of physicians in helping Americans with disabilities stay employed and well cared for is central to Campbell’s work. Are doctors prepared to treat the estimated increased number of Americans with disabilities? Campbell recently completed a study examining how healthcare professionals perceive the quality of life of their patients with disabilities.
Campbell has found that many physicians have difficulty advising their patients on arrangements that could help keep them in the workforce. “This has long-term implications for people’s ability to keep working, their income and, in the long-term, their health,” Nicholas said. “We need to understand what the appropriate interventions are to transform medical education in this regard.”
Campbell is in the process of completing an NIH fellowship to better understand the attitudes, perspectives, and experiences of physicians caring for patients with disabilities.
From this studyCampbell noted that the majority of physicians agree that people with disabilities have a lower overall quality of life than people without disabilities. And this despite the fact that people with disabilities themselves state that they have a good quality of life.
The misperception is a cause for concern because physicians’ perceptions of quality of life inform medical decision-making, both formally and informally, he said.
Campbell’s recent publication on these findings has resonated, particularly with the general public. “This is an interesting topic and can be used to help the public understand the experiences of people with disabilities. And that is our goal. Our goal is not to write papers, but to inform professional organizations and individuals and to help the public,” Campbell said.
In a second essay, Campbell found that a significant percentage of physicians admit to having very little knowledge of the Americans with Disabilities Act (ADA). The ADA is federal legislation that requires physicians to make arrangements for patients who need them in their care.
“It is the shared responsibility of the patient and the doctor to take these precautions,” Campbell said.
Discussing equitable care
This mandate of shared responsibility for care is affirmed by Section 1557 of the Patient Protection and Affordable Care Act, which requires hospitals to have staff responsible for providing accommodation for patients with disabilities. Megan Morris, PhD, MPH, CCC-SLPassociate professor at the Department of General Internal Medicine in CUs Department of Medicinespent most of the three years leading a working group for these employees.
“This is a topic of interest and can be used to help the public
understand the experiences of people with disabilities. And this is
our goal. Our goal is not to write papers, but to provide professional information
organizations and individuals and serving the public.” – Eric Campbell, PhD
Section 1557 requires healthcare organizations (HCOs) with 15 or more employees to appoint an employee to lead efforts to make organizational changes to comply with the law. As a result, many HCOs either appoint existing staff or hire new staff to serve as Disability Accessibility Coordinators (DACs).
Unfortunately, the laws are vague and provide no information on how to implement accessible care.
“While there is a statutory mandate, there is no literature, guidance or evidence on how to provide effective communication or accommodation for patients with disabilities,” Morris said. “There is no blueprint for how to do this job.”
Morris runs the Cooperation for disability rights (DEC), which hosts the Collaborative learning to promote disabled care (LEADER). This group supports individuals, healthcare organizations, policymakers, advocates, researchers, and professional organizations working to address health inequalities in those who experience disability.
“At DEC, we plan to foster collaboration and drive innovation in disability healthcare practice and policy,” said Morris. She is supported by Campbell and Nicholas in a shared vision “to make a meaningful impact on the health and health care outcomes of people with disabilities”.