|ADA National Network|
|Americans with Disabilities Act|
State of the Science
|April 13th-15th, 2021|
Transcripts and videos are in the sections below, and on our YouTube Playlist.
Day 3 Entire Presentation | Day 3 Transcripts (.rtf file)
Michelle Bishop leads a team to provide training and technical assistance to the P&A network on voting rights, voter engagement, and access to the vote for people with disabilities. She also works in coalition with the civil rights community in Washington, DC to ensure strong federal policy regarding voting rights and election administration. As a person with a disability, Michelle comes to NDRN with over 15 years experience in the disability vote and a passion for social justice.
Mary Lou Breslin has been a disability rights law and policy advocate and analyst for over thirty-five years. In 1979 she co-founded the Disability Rights Education and Defense Fund (DREDF), a leading national civil rights law and policy center, and presently serves as senior policy advisor with DREDF focusing on the organization’s healthcare research initiatives.
|9:00 AM**||Opening Remarks||ADA Knowledge Translation Center|
|9:05 AM||Keynote Presentation: Access, Inclusion, and the Aftermath of 2020||Michelle Bishop, National Disability Rights Network (NDRN)|
|10:05 AM||Physicians' Perceptions of People With Disability and Their Health Care||Dr. Lisa I. Iezzoni, Harvard Medical School|
|10:20 AM||Health Care Access and the ADA||Dr. Kurt Johnson and Mell Toy, Northwest ADA Center|
|10:35 AM||Improving Access for Service Animal Users||Vinh Nguyen and Dr. Monique Pappadis, Southwest ADA Center|
|10:50 AM||Participation, Accessibility, and Aging With Physical Disability||Dr. Michelle Putnam and Dr. Kerri Morgan|
|11:05 AM||Translating Participation Disparities Findings Into Community Action Reports: Findings From the ADA Parc Project||Joy Hammel and Jacqueline Kish, ADA PARC|
|11:20 AM||ADA Research Q&A||ADA Knowledge Translation Center|
|11:55 AM||Closing Speaker|
|12:25 PM||Closing Statements||ADA Knowledge Translation Center|
No one will soon forget 2020. The year that brought us a global pandemic, the likes of which hasn't been seen in 100 years. The year that brought us a Presidential Election that turned out a historic number of voters, six feet apart. 2020 also tested the promise of the ADA - highlighting the inaccessibility of vote by mail systems, vulnerability of disabled employment in a difficult economy, and rationing of care during a health crisis. How far have we come? Where do we go from here?
More than sixty-one million Americans have disabilities, and increasing evidence documents that they experience health care disparities. Although many factors likely contribute to these disparities, one little-studied but potential cause involves physicians’ perceptions of people with disability. In our survey of 714 practicing US physicians nationwide, 82.4 percent reported that people with significant disability have worse quality of life than nondisabled people. Only 40.7 percent of physicians were very confident about their ability to provide the same quality of care to patients with disability, just 56.5 percent strongly agreed that they welcomed patients with disability into their practices, and 18.1 percent strongly agreed that the health care system often treats these patients unfairly. More than thirty years after the Americans with Disabilities Act of 1990 was enacted, these findings about physicians’ perceptions of this population raise questions about ensuring equitable care to people with disability. Potentially biased views among physicians could contribute to persistent health care disparities affecting people with disability.
Lisa is Professor of Medicine, Harvard Medical School, and based at the Health Policy Research Center, Mongan Institute, Massachusetts General Hospital. Dr. Iezzoni has conducted numerous studies examining health care disparities for persons with disability. Her first disability-related book, When Walking Fails, was published in 2003; her most recent book, Making Their Day Happen: Paid Personal Assistances Services Supporting People with Disability Living in Their Homes and Communities, will appear in 2021. Dr. Iezzoni is a member of the National Academy of Medicine in the National Academies of Sciences, Engineering, and Medicine.
Researchers have found that people with disabilities run into many barriers to accessible health care. Most health care providers are covered by the ADA. We know from lots of research that people with disabilities do not get the same level of health care as people in general and we thought that a lack of accessibility likely played a part. We wanted to know what the experience was of people with disabilities in our region (Washington, Oregon, Alaska, Idaho) so we conducted a study of over 550 people asking about their experience with ADA barriers to accessibility. We also conducted focus groups of key informants responsible for ensuring accessibility in health care settings. What we found from people with disabilities is that they encountered many barriers ranging from inaccessible examination tables to lack of scales where they could be weighed in their wheel chairs, to inaccessible medical diagnostic services, to lack of accessible transportation to and from health care. We concluded that ensuring accessible health care remains a significant challenge. Clear standards are required, and training to health care providers about their responsibilities is necessary.
Dr. Johnson is a professor in the UW Department of Rehabilitation Medicine and is the PI on the Region X ADA Center. His research interests are around the intersection of disability and employment, technology and disability, and measurement of outcomes.
Michelle is Interim Director of the Northwest ADA Center, at the Center for Continuing Education in the Department of Rehabilitation Medicine at the U.W. Ms. Toy earned her BA degree from the University of Washington. With 19 years of experience working in the field of blind rehabilitation, she joined the NWADAC as Assistant Director in 2018. She is a Certified Low Vision Therapist (CLVT) and Certified Orientation and Mobility Specialist (COMS). She is a member of the ADA National Network Healthcare Committee. the ADANN OMS committee and other projects.
Questions about service animals are the most popular inquiries for the ADA National Network. The Southwest ADA Center (SWADA) surveyed 1,250 people across the country to explore service animal use among persons with disabilities, to identify associated barriers to accessing public spaces, and to make recommendations for improving access through stakeholder engagement. SWADA then convened a group of stakeholders to review the survey findings and make recommendations on how access can be improved. These stakeholders included people using dogs who performed different tasks appropriate to the needs of their disability and representatives from the restaurant, transportation, medical, and lodging industries. As expected, the concerns of people who use service animals are different from those of industry representatives. For example, the service animal users were concerned about businesses not understanding the ADA requirements for service animal while the service industries commented on the challenge of discerning between a service animal and a pet. However, the stakeholders all agreed that the ADA needed to be revised to address the misrepresentation of pets as service animals, that there should be a licensing or accreditation process that confirms whether the animal is trained, a licensing process for people who professionally train service animals, and a way for the service industry to quickly verify the license or organization.
While the ADA National Network is prohibited from advocating for a revision to the ADA, the ADA National Network can contribute to an education campaign to raise awareness to the barriers experienced by persons with disabilities and their service animals.
Vinh is the project director of the Southwest ADA Center at TIRR Memorial Hermann in Houston, Texas. He provides training and technical assistance on the Americans with Disabilities Act (ADA), and his research interests focus on the accessibility barriers that people with disabilities face with employment, community living, information technology, and the role of the ADA in addressing these barriers.
Dr. Pappadis is assistant professor of the division of Rehabilitation Sciences, School of Health Professions at the University of Texas Medical Branch at Galveston and an investigator at TIRR Memorial Hermann for its Brain Injury Research Center (BIRC) and its Independent Living Research Utilization (ILRU) program. Her research areas of interest include minority aging, health literacy, and ethnic minority health and behavioral health disparities, and psychosocial adjustment to disability. Dr. Pappadis has been working with persons with disabilities and their families since 2004. She is an active member of the American Congress of Rehabilitation Medicine (ACRM) and holds several leadership positions within the organization.+
The purpose of the Longitudinal Study of Aging with a Long-term Physical Disability is to develop a better understanding of the interaction of aging, disability, and participation over time. We wanted to know if what people do changes over time if do, if these changes are related to growing older, their functional ability, factors in their community - such as accessibility, services and supports that help them to participate or other personal or community resources – or all three. We designed a 5-year study that asked people ages 45-65, living with a physical disability for at least five years about themselves, the things they do, the services and supports they use, their perceptions of accessibility barriers in their communities, and if their satisfaction with their level of participation overall. The study is collecting data at three time points (waves) during the 5-year period. In late 2018 through early 2019, 475 participants answered the first survey; most lived in the state of Missouri. We analyzed data from this first interview, which was obtained before the pandemic began, to obtain an initial understanding of our study participants, the things they do, and what helps facilitate their engagement and what gets in the way of it. Our results indicate that participants experiencing common aging with disability symptoms including fatigue, pain, and depression are significantly more likely to report being less able to participate in the things they would like to do and less satisfaction with their participation in the things that they do. Persons who live alone, have less income, and worse health also report these outcomes at a higher level. Only about 18% of study participants were engaged in paid work. Our participants did report substantial environment and community barriers and many used a range of community-based services and supports. We looked more deeply into a range of activities (e.g., employment, community leisure) and identified factors in the physical environment, the need for environmental modifications, and assistive technology as barriers to participation. Finally, as the COVID-19 pandemic took hold, we asked our participants about how it affected their daily lives and found it had substantially impacted their social and community participation and engagement. Our next steps are to continue to analyze our Wave 1 data and to begin to analyze Wave 2 to understand changes in participation. We will take a deeper look into issues of accessibility as well as services and supports that facilitate participation and engagement. We expect that the COVID-19 pandemic will change participation in ways that we did not anticipate when we began data collection. As we continue to collect and analyze data, we will attempt to understand how this unexpected and historical event is shaping what people aging with disability do and how accessibility affects their ability to do the things they want to do.
Michelle is a Professor and Director of the PhD program in Social Work at Simmons University in Boston, Massachusetts. She is a co-investigator for the Longitudinal Study of Aging with a Long-Term Physical Disability. Her research focuses on the intersections of aging and disability with particular emphasis on understanding how public programs and public policy meets the needs of persons aging with disability. Over her career, she has worked on a wide range of projects with interdisciplinary teams - all emphasizing the importance of increasing knowledge of and awareness about issues of aging with disability and bridging the fields of aging and disability. Her latest work is the Handbook on Aging with Disability, published by Routledge and co-edited with Dr. Christine Bigby at La Trobe University in Melbourne, Australia.
Kerri is an Assistant Professor for the Program in Occupational Therapy and Neurology at Washington University School of Medicine. Dr. Kerri Morgan leads the Longitudinal Study of Aging with a Long-term Disability. The focus of her clinical and research career has been to generate empirical knowledge helpful for guiding rehabilitation to improve the participation of persons with a mobility disability once they have been discharged from rehabilitation and are living in the community. Her work has ranged from community-based studies to basic mechanistic studies focused on increasing physical activity, preventing secondary conditions, and improving overall health. In addition, she is deeply involved in the community through boards and service working with disability organizations to promote health and wellness for people with disabilities. Dr. Morgan is also an avid wheelchair athlete and distinguished Paralympian. She has won 4 Paralympic medals and 10 World Championship medals in wheelchair track.
The ADA PARC project is examining disparities people with disabilities experience 30+ years after the passage of the ADA. This disparities research has been used nationally to inform systems and policy changes. Recently, we have collaborated with local communities in Chicago IL, Houston TX, and San Francisco CA to create city and community level reports. These reports are shared at community forums with key stakeholders, including disability rights organization representatives, Mayor and Governor level planning and task force committees, urban planners, transportation agencies and local government representatives. The stakeholders review findings specific to their city, region, and neighborhood levels; identify how they compare to similar size cities and where key disparities exist for people with disabilities; and action plan how to take the findings from ADA PARC and use them in systems and policy action changes in their local communities. We have also gathered summary data from these forums to demonstrate knowledge translation action steps that the ADA PARC project, regional ADA Center, and the targeted community are now working on collaboratively to expand participation opportunities and decrease disparities experienced by people with disabilities.
Joy Hammel, PhD, OTR/L, is a Professor and Endowed Chair in the College of Applied Health Sciences at the University of Illinois at Chicago, in the Departments of Occupational Therapy and Disability and Human Development. She is a disability studies scholar, and identifies as disabled woman and activist. Her research is focused on participatory action research (PAR) with disabled people and disability rights communities specific to living and fully participating in communities of choice. She is a Co-Principal Investigator on the Americans with Disabilities Act Participation Action Research Consortium (ADA PARC), a 5 year center grant funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) which uses PAR to document disparities disabled people experience in community living, participation and economic equity 30+ years since the passage of the Americans with Disabilities Act. ADA PARC focuses on policy and system changes to promote more equitable participation opportunities, and on disability community empowerment.
Jacqueline Kish, MS, OTR/L, is a PhD candidate in Disability Studies at the University of Illinois at Chicago. She is an occupational therapist, disability advocate and scholar. Her studies focus on community participation disparities, participatory research methods, and policy change related to public transportation experiences for people with disabilities in urban areas. She has been a research assistant for the Americans with Disabilities Act Participation Action Research Consortium (ADA-PARC) project since 2014 and focuses on disability specific community participation indicators, data analysis and scorecard creation. She is also a founding member of The Disability Studies and Occupational Therapy Network that aims to nurture a community that creates and disseminates knowledge, integrating contributions from disability studies into the field of Occupational Therapy.