The Amputee Coalition Works to Address Disability-Based Health Disparities

The Amputee Coalition is an active member of the Consortium for Citizens with Disabilities (CCD), a coalition of more than 100 disability organizations. We have been working with CCD and its member groups to comment on proposals, meet with lawmakers and push for the policy changes needed to ensure that healthcare reform meets the needs of all Americans. One of the issues we are working on is the disparities that exist for people with disabilities in accessing adequate healthcare.

Almost 2 million Americans are living with limb loss or limb deficiency as a result of disease, trauma or birth defect. As the emerging public healthcare crisis of diabetes escalates, the number of amputations will likewise increase. It is essential that the needs of people with limb loss be considered as healthcare proposals are developed to ensure that they are able to lead independent, productive lives.

The Amputee Coalition and its allies are working to ensure that healthcare reform will eliminate the disability-based health disparities faced by the more than 54 million Americans with disabilities, including people with limb loss.

Research shows that individuals with disabilities experience a lower rate of education and employment and a higher rater of poverty when compared to nondisabled people. The Agency for Healthcare Research and Quality reports that private health insurance is less available to people with disabilities. Two surgeon generals’ reports have called attention to the need to address disability-based health disparities in access to clinical care, prevention and wellness and public health services. One of the problems is a lack of “cultural competency,” – the ability to interact effectively with people from different backgrounds – among healthcare agencies.

The main cause of acquired limb loss is poor circulation in a limb due to arterial disease, with more than half of all amputations occurring among people with diabetes mellitus. Today, diabetes is much more common in African Americans, Hispanic/Latino Americans, and American Indians/Alaska Natives. It is estimated that more than 75 percent of the amputations caused by diabetes complications are preventable. Proper testing and treatment must be available to prevent both primary and secondary amputation.

Nonwhite, low-income patients without commercial insurance are more likely to delay diagnosis of peripheral vascular disease (PVD), which often results in amputation of the lower limbs.

In spite of the startling evidence of the disability-based health disparities and the costs to treat preventable conditions, current federal law does not consider people with disabilities a “medically underserved population” and fails to recognize disability-based health disparities under any federal program that addresses other health disparities. Healthcare reform must fix this injustice.

Healthcare reform must end these health disparities by ensuring:

• Access to affordable coverage for Americans with disabilities without regard to pre-existing conditions or whether the intervention is habilitative or rehabilitative in nature

• Inclusion of people with disabilities in the definitions of “medically underserved populations” and “cultural competence” 

• That low-income, medically complex patients at risk for limb loss receive timelier and high-performance care. This should be combined with community-based public health and preventive medicine interventions that address the socioeconomic issues that impact these patients’ access to care

• That educational campaigns and appropriate access to screening for low-income patients are available to ensure early diagnosis of PVD to decrease amputation rates

• A delivery system is created that is prepared to provide appropriate, accessible and equivalent care for individuals with disabilities at all levels of service

• Inclusion of individuals with disabilities in all data collection and reporting required for racial, ethnic, gender or geographic health disparities, in a manner that can facilitate identification and reduction of disparities associated with physical, mental health, cognitive, sensory, intellectual and/or developmental disabilities

• Equal treatment of the population of people with disabilities in all policies, programs and research designed to decrease health disparities

• Inclusion of people with disabilities in prevention and wellness programs

• A healthcare workforce that is trained to address the needs of individuals with disabilities, including physical, mental health, cognitive, sensory, intellectual and/or developmental disabilities

• Development of specific quality measures to improve primary and preventative care for individuals with disabilities

• Development and strengthening of the “medical home” to meet the healthcare needs of people with disabilities

• That health information technology systems are created that collect aggregate, specific data about physical, mental health, cognitive, sensory, intellectual and/or developmental disabilities while maintaining individual privacy

• Inclusion of “disabilities” and “sign language interpreters” in the Office of Minority Health’s National Standards on Culturally and Linguistically Appropriate Services (CLAS).

As the population ages and the diabetes epidemic grows, limb loss will affect even more Americans. Healthcare reform must consider limb-loss prevention opportunities and the essential care needed to enable people with limb loss to live independent, productive lives.

The Amputee Coalition feels that this is the right time and healthcare reform is the right undertaking to correct disability-based health disparities so that healthcare reform is for all Americans.

To find out more about our healthcare reform initiatives or to get involved, visit www.armsandlegsarenotaluxury.com.