For Immediate Release
Contact: Jerrica Thurman, Director, Communications, jerrica@amputee-coalition.org
(July 5, 2022, Washington, D.C.) The Amputee Coalition published the results of the largest community survey of its kind to assess the physical and mental health priorities of people with limb loss and/or limb difference (PwLL/LD). Until recently, little was known about the more than 2.1 million PwLL/LD and their challenges accessing appropriate and quality care. These findings will assist the Amputee Coalition with raising awareness and informing priorities to improve the quality of care that PwLL/LD receive.
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. The survey findings demonstrate that PwLL/LD experience disability-specific needs and challenges such as rehabilitation services, pain treatment, and issues regarding understanding their rights, including understanding the Americans with Disabilities Act (ADA).
“The Amputee Coalition is dedicated to ongoing research that prioritize the needs of people living with limb loss and limb difference. 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,” said John Register, interim president and CEO for the Amputee Coalition. “We deeply thank the more than 1,700 individuals who participated in the survey and for their invaluable contributions to building a broader understanding of the community’s lived experience.”
Conducted from 2021-2022, the survey reveals three key findings and opportunities to address the unmet needs of PwLL/LD: a need for assistive technologies, 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. Survey respondents also 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 ADA. The survey responses demonstrate that physical and mental health priorities for PwLL/LD are closely related. 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.
The survey’s key takeaways include:
- The need for pain management
- The need for age-appropriate medical solutions for PwLL/LD
- The need for integrated physical and mental healthcare
- The need for increased resources to help the community in understanding ADA and navigating health insurance
These critical areas highlight the importance of targeted and systemic policy solutions to improve access to quality care for the limb loss and limb difference community. These results provided the Amputee Coalition with tremendous insights to inform the Coalition’s future activities:
- Support: Ensuring PwLL/LD have robust social and community support services to navigate daily life with limb loss or limb difference
- Education: Teaching individuals about LL/LD to improve access to care and quality of life
- Prevention: Providing resources to the broader community to understand how to prevent LL/LD, including through early diagnosis and medical interventions
- Advocacy: Increasing engagement with community leaders, particularly in underserved communities, to provide effective support and promote health equity
Read the full report and view the infographic. You may also access the article summary and watch the webinar presentation. More details about the community needs survey results will be presented at the Amputee Coalition 2022 National Conference in Palm Desert, CA, from August 10-13. Learn more at www.amputee-coalition.org.
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Amputee Coalition: The Leading Voice on Limb Loss and Limb Difference
The Amputee Coalition is the only national non-profit 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.