Understanding the Complex Care Needs of People with Limb Loss and Limb Difference

Introduction

Little is known about the more than 2.1 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.

Assistive Technologies
Survey respondents identified their 3 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.

Health Literacy
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 3 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 ACA 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.

Conclusion

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.

Press Release: Amputee Coalition Applauds GAO Examination of Health Insurance

The Amputee Coalition applauds a major development in support of the limb loss and limb difference community, as the federal government initiates a study of the barriers to prosthetic device assessment and access for 2.1 million Americans with limb loss. After nearly two years of grassroots and Congressional support for the Triple A Study Act (a bipartisan bill that calls for the study), the authors of the legislation sought to move the study forward either through legislation or through direct engagement with the Government Accountability Office (GAO). In recent weeks, the Congressional champions wrote to the GAO requesting that the office begin the study as soon as possible. The GAO responded within weeks, writing to Senator Marsha Blackburn (R-TN), Senator Tammy Duckworth (D-IL), Representative G.K. Butterfield (D-NC), and Representative Brett Guthrie (R-KY) that the office will initiate the study this year.

The Amputee Coalition has proudly worked to develop, support, and advocate for the Triple A Study Act to ensure equitable health care for people living with limb loss or limb difference, and to uphold a common standard for best practices in our nation’s health systems. With the active leadership and engagement of advocates from across the country, the Triple A Study Act garnered bicameral, bipartisan support prompting the legislation’s original sponsors to send a letter to GAO to request that the study commence immediately – shortcutting the longer legislative process of consideration, passage, and enactment.

“The study getting underway this year is the first step in gaining an understanding of a basic need for our community – why isn’t everyone assessed for an assistive device after limb loss and how can we ensure necessary, equitable access across all payers. The legislative effort truly reflected a shared commitment to a common goal, and we are delighted that the GAO is moving swiftly to implement the bill without requiring enactment.  With aligned efforts between our grassroots advocates and our Congressional champions, we have created a national commitment to meeting the needs of the limb loss and limb difference community,” said Mary Richards, president and CEO of the Amputee Coalition. “This win moves us towards building a deeper understanding of the mobility and care challenges facing the 2.1 million Americans with limb loss and limb difference and will serve as a catalyst to creating a national commitment to improving the quality and length of life for all Americans who experience amputation.”

With 28 million Americans currently at risk of limb loss, it is critical to understand the barriers to care and identify solutions to positively impact members of our community. Learnings from the GAO study will help identify ways to improve the quality of life for everyone with limb loss or limb difference. The Amputee Coalition is committed to disseminating these new discoveries through all of its programs, including the National Limb Loss Resource Center and in partnership with the Administration of Community Living.

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Amputee Coalition: The Leading Voice on Limb Loss and Limb Difference

The Amputee Coalition is the only national nonprofit that serves all individuals who experience limb loss or limb difference. We are dedicated to ensuring that no one faces limb loss alone. Our mission is to reach out and empower people affected by limb loss to achieve their full potential through support, education, advocacy, and prevention. We work to provide vital resources to people with limb loss and limb difference, as well as their families and caregivers. With these resources, they can recover, readjust, and live the life they most want to live. Learn more at www.amputee-coalition.org.

 

Ukulele U celebrates Limb Loss and Limb Difference Awareness Month

Ukulele UThis month is Limb Loss and Limb Difference Awareness Month (LLLDAM), April 1-30, 2022. The annual celebration was created to raise awareness about what it’s like to live with limb loss and limb difference, and this year’s theme is “Your Ordinary is Extraordinary.”

CBC’s sing-along musical variety kids’ show, Ukulele U, brims with fun and inclusivity; is rooted in the idea of belonging and celebrates what makes kids unique. The show was developed by a world-class team of award-winning creators including legendary Music Producer, Bob Ezrin (U2, Taylor Swift, Jay-Z), Emmy and Gemini Award-winning Executive Producer, Michael Hirsh (Inspector Gadget, Babar, Care Bears), Juno Award-winner, Melanie Doane and double below-knee amputee, David Connolly who serves as the show’s Creative Producer, Co-Writer, Director and Choreographer.

David Connolly“I am proud to be involved with a show that is so fiercely dedicated to the idea of changing on-screen representation. People on screen should reflect the audience watching and that’s what this show does through its casting and musical messages of kindness and inclusion. If my being vocal about belonging to the limb loss community provides hope to other amputee kids and sheds light on this fantastic new show, then great,” said Connolly.

As the only amputee to have ever performed on Broadway, Connolly is a proud advocate who’s deeply committed to matters concerning disabled inclusion. He has built a multi-faceted career spanning over 25 years including directing several series for CBC Kids including The Doodlebops, Doodlebops Rockin’ Road Show and The Moblees. Also for CBC, he has choreographed Andrew Lloyd Webber’s series, “How Do You Solve A Problem Like Maria?”, The Canadian Country Music Awards and A Season of Song: The Canadian Tenors and Friends. For the screen, David has choreographed the Deepa Mehta Feature Films, Bollywood/ Hollywood and The Republic of Love.

For the stage, David who is also the Associate Artistic Director of Drayton Entertainment, has directed over 30 musicals, including the Canadian regional premieres of Kinky Boots, Disney’s Newsies, Priscilla Queen of the Desert, and Mamma Mia! He has collaborated with artists including Katy Perry, Elton John, Sarah Jessica Parker, kd lang, Patti LaBelle, Sarah Brightman and many others. He is a recipient of the Premier of Ontario’s Award of Excellence and a proud Ambassador for the Shriner’s Hospital for Children, and the War Amps Child Amputee Program.

Administration for Community Living Celebrates 10th Anniversary

ACL logoPlease mark your calendars and plan to join the Administration for Community Living (ACL)  for its tenth anniversary virtual celebration on Tuesday, April 26 from 1-2:30 p.m. (EDT).

We’ll celebrate the last decade’s achievements, explore the opportunities in front of us and what we’re doing to take advantage of them, and look ahead to what’s needed to achieve our vision for the future of our country: community living as the expectation for all people, true inclusion and integration of older adults and people with disabilities in our communities, and the aging and disability networks working together to advance both.

The event will feature two panels of leaders from the aging and disability communities.

In the first panel, ACL’s co-founders –  Kathy Greenlee, Sharon Lewis and Henry Claypool – will talk about the vision they had when they created ACL in 2012, the key milestones and accomplishments of ACL’s first ten years, and how ACL can build on the strong foundation laid in its first decade to establish and support a national expectation of community living.

The second panel will talk about the future of community living, with a focus on building partnerships and collaboration. The panel will highlight how the aging and disability communities can work together, along with direct care workers and family caregivers, to build the infrastructure needed to support community living for all people, regardless of age or ability. Moderated by Grace Whiting, Executive Director of the National Academy of Elder Law Attorneys, the panel will feature three leaders from the Care Can’t Wait coalition:

  • Ai-jen Poo, Co-founder and Executive Director of the National Domestic Workers Alliance
  • Kevin Prindiville, Executive Director of Justice in Aging
  • Maria Town,  President and CEO of the American Association of People with Disabilities

The work they have been doing is a wonderful example of how the aging and disability communities are stronger – and more effective as advocates – when we work together to address common needs, and illustrates the kind of collaborations ACL was created to spur and support.

The event will be livestreamed and recorded, and ASL and live captioning will be provided. For more information, visit the ACL website.

 

Denice Chobanov Barsich

I’m a Survivor.

My name is Denice Chobanov Barsich. On January 23, 1991, as a 35-year-old mother of three small children, I became an amputee. I stopped to help a stranded motorist on a country road, and yes, it was my choice to help. I parked my car by a farmhouse and ran back to help. In a quick minute, another motorist came around the curve and went off the road striking me while I tried to put a piece of cardboard underneath the stranded motorist’s tire. I had a mangled left leg with severe fractures and a RLBK. I know my three children willed me to survive. That began my journey of a new and wonderful life!

The lessons my family and myself have taught people came naturally. I never hide the fact that I am missing pieces and I am an open book when it comes to my life as a handicapped person. It started small when my oldest started preschool, I was there with a walker and no leg. The questions poured out of eight preschool children the first time they saw me. This began my world of public speaking and teaching about the handicapped world. I made it my mission to teach children. My motto is teach the small so they can go home and teach their parents. I worked for over 25 years in my children’s school system and finally retired last year. I was known as Mrs. B. with the cool bionic leg.

No matter where I go and what I do I will get stopped and asked questions about my leg. A 15-minute errand run becomes longer because I get stopped with questions. I will never stop being an open book about being a handicapped person. Life is too short and no matter what I may look like to everyone else, I am a wife of 45 years, a mom to three successful adult children, a daughter, a sister, an aunt, and a very proud RLBK amputee.

This article is featured in Amputee Coalition’s #WeTHRIVE story campaign to help raise awareness of the resilience, strength, and courage that people living with limb loss and limb difference have to transform their ordinary into extraordinary.