6
Reflections on the Day
The workshop’s concluding activity was to solicit key lessons from the members of the two sponsoring roundtables. One message Marin Allen heard was that everyone involved in the process of providing care for an individual with disabilities must ask what their clients, family members, and other caregivers need and answer when they ask. In the same vein, she said communication is not hard science, but it is key to everything that will make the health care process work better. She also noted that the linguistic complications that are set to arise with the changing demographics of the United States are something the health care enterprise needs to plan for today. Jennifer Dillaha said a key lesson for her was the need to design the health care system on the default assumption that most people will experience a disability at some point in their life and that most people will struggle with low health literacy.
From her perspective as an interpreter, Wilma Alvarado-Little reminded the workshop participants that not all communication is verbal. “How we approach individuals says a great deal, whether or not we are saying anything,” she said. She also commented on the importance of the message she heard from Vanessa Nehus, “Do not do anything about us without us,” because too often those on the provider side talk at or about individuals with disabilities as if they were not in the room, and on Michael Paasche-Orlow’s message of “If you do not care, do not check.” Another important comment she heard was that too many people and organizations are unaware of the legal requirements to provide access to needed services, such as language interpretation. Alvarado-Little said it is clear that more needs to be done about training professionals of all varieties, including pharma-
cists and those who work in departments of social services, about the links between health care and external services and programs that can benefit individuals with disabilities. She also noted the importance of the origin of illness and its cultural meaning and significance as it relates to health literacy, particularly for some of the immigrant and refugee communities, and of the need to think about elements of physical infrastructure (e.g., roads and sidewalks) and their impact on access to health care for individuals with disabilities.
Kim Parson from Humana reiterated the message of “Do not do anything without us,” as well as the notion that everyone will experience a disability at some point in their life. Building on those ideas and the need for better educating professionals, she said that achieving the biggest impact will come if training is done in an immersive and experiential way.
Michael Paasche-Orlow said he was happy to hear about the need for new financing mechanisms to improve the delivery of services to individuals with disabilities. He also commented that he had not thought of this as a social justice issue prior to this workshop, that the current system’s design is so hard and complicated to use because it was built by educated people for educated people, for the digerati, and for the fully able. “It is a social justice matter to redesign the system so the incentives work and so they are coordinated,” he said.
Linda Harris, who is losing her hearing and is heading for a cochlear implant at some point, appreciated the reminder of what it is like to be on both sides of this issue. The main thing she learned was how difficult it is to ask for accommodations and how important it is for the health care system to accommodate proactively. “Do not wait to find out if someone understands—assume they do not understand,” said Harris. “If you can take a universal precaution approach not only in the health care system but with one another, I think we could generalize many of the principles discussed today for all of us.”
Bernard Rosof said there is a need to continue to advocate for including people with disabilities in public health programs and services as well as in federal and state policies. “We should not forget the big picture and continue to advocate,” said Rosof. The other important idea for him was the need for further education on the transition to adulthood. “That education should be mostly on the provider side and mostly in the transition from pediatrics to adult medicine, family practice medicine, and primary care medicine,” said Rosof. “It is difficult, but it needs to be done.”
Cara James from the Centers for Medicare & Medicaid Services’ Office of Minority Health applauded the richness of the day’s presentations and discussions but felt they only scratched the surface as far as the questions that need asking and the steps that need taking to make substantial progress. One aspect of that is the dearth of data to help understand dis-
ability and the intersections of race, the social determinants of health, and disability in the nation’s policies and programs. She also wondered how to incorporate teachings about the social determinants of health in the education of health professionals throughout their careers, and noted the importance of keeping the person at the center of care, of engaging them and their families in getting the supports they need, and of doing so in the context of the heterogeneity of this population.
Kendall Campbell, a National Academy of Medicine Anniversary Fellow, reflected on the comment that providers need better training on how to address the disabled and thought that the issue should be broadened to include training providers to eliminate barriers in general. He also raised the importance of extricating minority and disabled from the word burden. Finally, he wondered how to get to the place where disability is not a health outcome but rather something that providers look for in all the individuals for whom they care.
Pattie Tucker from the National Center for Chronic Disease Prevention and Health Promotion at the Centers for Disease Control and Prevention said she was enlightened about the complexity of the discussion about people living with disabilities, health disparities, and the challenges associated with health literacy and health equity. She also noted the need for better data about the disparities experienced by populations of people living with disabilities as well as the importance of taking a multisectoral, cross-cutting approach to address those disparities. She added that she was struck by the intersectionality around people with disabilities, race, ethnicity, poverty, gender, and age.
Francisco García noted that as a person of color, he believes deeply there is a great deal to learn from the heterogeneity within the nation’s diverse populations, but that is not something he had thought about prior to the workshop as it pertains to the issue of disability. “Understanding that diversity, understanding the diverse needs and diverse aspirations within those populations, can help inform as we deliver care and services,” said García. The challenge, he said, is to “quilt these things into health system reform, because the more we talk about these very complex issues, the clearer it is to me that it is not just about payment reform, it is not just about incentivizing providers, and it is not just about the role of empowering patients. It really has to be a systematic, holistic kind of reform of the delivery and support system.”
Jeffrey Henderson said he agreed with James and Paasche-Orlow that it is time to start acting on these problems instead of just studying them. However, he added, “This issue calls to mind that we know more about adult caregiving among American Indians and Alaska Natives than we know about the disabled people themselves for whom adults may be providing care.” He noted that he and his colleagues have been incorporating
questions about adult caregiving in their surveys of more than 10,000 tribal members over the past 9 years without bothering to know much at all about disabled adults or children. He commented, too, that South Dakota, where he lives and works, is one of the states that refused to participate in Medicaid expansion and that he has no idea about the kind of service industry and state programming that exists in the state for persons with disabilities. “But now my interest is piqued enough to want to know, so I will endeavor to find out and learn more about disability in the native populations in this country,” said Henderson.
Ned Calonge said he was coming away from this workshop with a better appreciation of being both a person of color and a person with a disability. “I think that is a unique intersection that we have to acknowledge and work harder to address,” said Calonge. He also said that while he is skeptical about the health care system’s ability to address health equity, the relationship between persons with disabilities and the health care system may be the one area in which the health care system can significantly affect and engage in the social determinants of health to improve the health and well-being of people with disabilities. “I am a little optimistic,” he said. “I feel that it might be done in an economical way that fits the cost curve, and I have some hope for the health care system to address health equity for this population.”
Christine Ramey said she has a deeper understanding of the need for community support for individuals living with disabilities. She also noted the critical importance of establishing good lines of communication both with the health care sector and with other sectors with regard to transportation, walking, sidewalks, and other access issues not related to health. “For me, it is so critically important that we do not forget that there are so many other priorities that contribute to facilitating access for people with disabilities to get the health care they need,” said Ramey.
Uche Uchendu noted that discussions of vulnerable populations always highlight race and gender and even geography as it relates to the different challenges that rural and urban populations face, but people are not monoliths. Just because someone is an African American or a Native American does not mean there are no other vulnerabilities—including disabilities—that touch their lives. One theme that connects all of these vulnerabilities is cultural competency within the health arena. “It is not that you have to know everything about someone who has a hearing deficit or know everything about disabilities and challenges and physical issues, but you have to be open to learn about them,” said Uchendu. In that regard, it is important to set a good tone that makes others comfortable so that they will share their challenges.
Uchendu also said she agreed with the sentiment that more studying is not the answer and that it was time to move from studying to acting. How-
ever, she said there is still a need to have ongoing data collection to know where progress is and is not occurring. “Until we have that transparency, it is easy to lose sight of the issues,” said Uchendu.
The final comments came from Antonia Villarruel, who noted how important it was to have some discussion about helping consumers be proactive, but when the layers of race, ethnicity, income, education, literacy, and age are added in, it becomes hard to do so because so many people are not taught in their cultures to be proactive and to have a voice. “When we have all of these person-centered models and have the patient be their own advocate, we have to be mindful that oftentimes that patient, that consumer, may not feel that they have a voice and it takes time to get the voice out of them,” said Villarruel. She also pointed out the importance of the family members and other caregivers for this population and the need to care for the caregivers. In addition to providing respite and support for caregivers, there is an opportunity for caregivers from a low-income background to gain skills that can create workforce development opportunities. “We need to think about developing that underused yet diverse group of people who have talent,” said Villarruel.
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