Little is known about the more than 2.7 million people living with limb loss and limb difference (PwLL/LD) and their challenges accessing appropriate and quality care. This community experiences complex health needs, including the availability and quality of assistive technologies, the intersection of physical and mental healthcare, and the barriers to obtaining adequate accommodations and health benefits for their disability.
The Amputee Coalition conducted the largest community survey of its kind to assess the physical and mental health priorities of PwLL/LD. In addition to individual health priorities, the survey identified access gaps in physical and mental health services and the need for social and community support resources. Survey findings demonstrate that PwLL/LD experience disability-specific needs and challenges (e.g., rehabilitation services, pain treatment) and issues regarding understanding their rights (e.g., understanding the Americans with Disabilities Act [ADA]).
Three Key Findings and Opportunities to Address Unmet Needs
Survey findings highlight complex healthcare needs for PwLL/LD. In particular, individuals noted a need for assistive technologies (i.e., a device, piece of equipment, or system used to mitigate a disability), better understanding of accommodations and benefits for individuals with disabilities, and improved integrated physical and mental healthcare.
Survey respondents identified their three most important physical health priorities as strength and balance, improved assistive device performance or comfort, and access to a prosthesis. This finding is aligned with prior research that suggests two-thirds of Americans living with LL/LD never receive a prosthesis. Further, while many PwLL/LD choose not to wear a prosthesis, several recent studies of individuals who discontinued prosthesis use, primarily in individuals with upper limb amputation, found that the main reason for prosthesis abandonment was dissatisfaction with the comfort and/or function of the device.
The high priority placed on assistive technologies identified by survey respondents may be influenced by several factors. For example, access challenges may be correlated with insurance coverage issues, including accessing any prosthesis or accessing the right kind of prosthesis (e.g., body-powered vs. electric). A person’s insurance coverage will often dictate what type of prosthesis they will choose and how much they will pay out of pocket; for example, under Medicare Part B, patients are required to pay 20% of the Medicare-approved amount for an external prosthesis after meeting their deductible. Since prostheses can cost anywhere from $3,000 to $50,000, the amount a patient is required to pay out of pocket may be a barrier to receiving a device that meets an individual’s complex needs.
The Government Accountability Office (GAO) recently announced it intends to study barriers to care for assistive technologies, including prostheses, and evaluate how these barriers affect patient outcomes across Medicare, Veterans Affairs (VA), and private insurers. This study, originally proposed in the Triple A Study Act (S. 1089/H.R. 2461), provides an opportunity to obtain additional data to identify the best care practices for PwLL/LD in an effort to improve the health of the community. GAO will initiate the study during 2022.
Survey respondents highlighted the need for assistance with understanding (1) how to navigate health insurance and (2) how to take advantage of accommodations afforded to PwLL/LD by the Americans with Disabilities Act (ADA). These responses indicate that PwLL/LD may be missing out on tailored care options, benefits, and accommodations that could improve their quality of life.
Findings suggest that making healthcare more user-friendly for people with disabilities, including PwLL/LD, and promoting public affairs education initiatives and health literacy in the community could improve understanding of and access to these benefits.
CDC’s Health Literacy Action Plan, adapted from the National Action Plan to Improve Health Literacy, is organized around three goals:
(1) develop and share health and safety information that is accurate, accessible, and actionable; (2) integrate clear communication and health literacy into public health planning, funding, policy development, research, and evaluation; and (3) incorporate accurate, standards-based, and developmentally appropriate health and science information and curricula in educational settings from preschool through university level. Implementation of this plan may address challenges related to knowledge gaps identified in the survey.
Additionally, in 2021, the Department of Health and Human Services (HHS) announced $80 million in grants to 60 navigator organizations to quadruple the number of Affordable Care Act exchange navigators to 1,500 in the 2022 coverage year. As part of these grant awards, navigator organizations were asked to focus on how they would identify and enroll underserved individuals. Increasing the number of available exchange navigators with a particular focus on alleviating health coverage disparities may improve workforce capacity to provide needed assistance to PwLL/LD in finding appropriate health insurance coverage.
Integrated Physical and Mental Healthcare
Survey responses demonstrate that physical and mental health priorities for PwLL/LD are closely related. For example, PwLL/LD identified “strength and balance” and “ability to exercise” as top physical and mental health priorities, respectively, each of which affects the other. Similarly, survey participants noted the greatest access barriers to and knowledge gaps regarding techniques for better sleep and non-opioid pain management. These findings suggest accounting for the unique physical and mental health priorities of PwLL/LD could make policy solutions more appropriate for this community.
People with disabilities, including PwLL/LD, often do not have access to integrated physical and mental healthcare or to mental health providers who adequately understand their patient’s disability. Eliminating barriers to integrating physical and mental health services for individuals with disabilities or to improve existing mental healthcare, particularly in underrepresented communities, can improve access to integrated care for this population. Further, additional research is needed to understand existing gaps in integrated care to provide targeted policy solutions for improvements across care settings and rural and urban communities.
The 2021-2022 Community Needs Assessment Survey identified physical and mental healthcare gaps unique to PwLL/LD that highlight the need for targeted and systemic policy solutions to improve access to quality care. Further research may generate additional data, including data related to disparities in care for this community, to better understand how to improve the lives of PwLL/LD. Prior to this survey, a 2008 study revealed that African Americans are up to 4 times more likely and Hispanic/Latinx Americans are 1.5 times more likely to undergo an amputation than White Americans, demonstrating that racial and ethnic disparities do occur in this community. Additional studies could offer an understanding of how these prevalence disparities may influence healthcare needs and access challenges for PwLL/LD. Further, future research could generate insight into policy solutions to improve health equity for PwLL/LD and individuals with disabilities more broadly.
Funding for this article was provided by the Amputee Coalition. Avalere Health retained full editorial control.