January 7, 2009

Kareem Dale                                                                                                                                        

Presidential Transition Team
Washington, DC

Dear Mr. Dale, 

As the leading consumer organization representing people affected by limb loss in the United States, we would like to share our views and priorities on a number of issues related to limb loss with President-elect Obama and hope that as he works with lawmakers on Capitol Hill, he will encourage them to consider policies that affect people with disabilities and advance their abilities to live to their full potentials.

ACA advocates for equal access to, and delivery of, information, quality care, appropriate devices, insurance coverage, and the services required to lead empowered lives.  The ACA provides the public, the limb loss community and health care providers a comprehensive source of information regarding amputation and rehabilitation through its National Limb Loss Information Center.  We also conduct the model for peer visitation in the limb loss community. Our National Peer Visitor program has been used within US military medical centers and, in 2009, will be conducting training for the Veteran’s Administration. 

We are dedicated to advancing causes and promoting prevention of limb loss and enhancing the quality of life for all individuals with limb loss and their families by encouraging effective prevention and intervention, fostering research, and protecting amputee rights under the law.

During this presidential election year, there was much discussion about our country’s health care crisis.  These challenges are certainly felt by many of the almost two million amputees across the United States who are face personal health care dilemmas in the form of restrictions, limitations and exemptions on their coverage. Insurance coverage in both the private and public sector is variable and often inadequate to meet individual needs.  Amputees are being refused insurance benefits that they need to live active and productive lives, and frankly, we believe this is just wrong—arms and legs are not a luxury.

On behalf of the almost two million people living with limb loss, we offer the following suggestions for developing and enhancing policies to help meet the needs of people with disabilities. 

Support the passage of the Prosthetic Parity Act (HR 5615/S 3157) requiring private health insurers to provide parity in coverage for prosthetic care.  

Currently, many health insurance companies are capping prosthetic arms and legs benefits too low for the average person to obtain a prosthesis.  Some insurance companies provide coverage for only one prosthesis per lifetime.  On average, an adult amputee will need a replacement every five years, and children more frequently as they grow.

The lack of access to prosthetic devices leads to poor rehabilitation outcomes, and places amputees at a greatly increased risk of developing dangerous and costly secondary conditions such as obesity, diabetes, cardiovascular disease and additional amputation.

Secondary complications lead to decreases in mobility, productivity and the ability to live independently, which conspires to create additional costs of care, significantly impact the quality of life and shorten life expectancy.

The Prosthetic Parity Act (HR 5615/S 3157) creates a consistent standard of coverage offering adequate benefits to allow amputees to lead active lives and has bi-partisan support in the House and the Senate.

Support the continuation of the Center for Disease Control (CDC) appropriation for the ACA’s National Limb Loss Information Center in the Labor, Health and Human Services and Education Appropriations bill. 

The Labor, Health and Human Services and Education Appropriations bill (HR 3043) includes funding for several key prevention programs at the Centers for Disease Control and Prevention (CDC), including the Amputee Coalition of America’s National Limb Loss Information Center (NLLIC).

The NLLIC helps individuals living with disabilities find information on medical, physical, and emotional needs, and resources and support to reintegrate socially and economically into society.  This program improves quality of life for individuals with limb loss, and their families, and also helps prevent secondary complications by promoting health and wellness among people with limb loss.    

The funding received by the Amputee Coalition of America not only funds the information center in providing resources to thousands of amputees, their family and caregivers.  This grant also supports the ACA’s annual conference and the peer visitor program.  The peer visitor program trains experienced amputees who provide emotional and informational support to new amputees and their families.  Peers make contact through personal visitation, when possible, and by phone, email, FAX, and surface mail.   These trained peers help new amputees jumpstart their transition to a new life by sharing information, by serving as a model of success, and by offering understanding and support.

Fully fund the research and prevention programs at the National Institutes of Health and the Centers for Disease Control and Prevention (CDC) to get these programs back on track to better prevent and treat illnesses that cause limb loss, including diabetes, cardiovascular disease, cancer, and others.

There is an estimated 185,000 amputations per year. Comprehensive amputation-prevention programs have reduced rates of amputation by 50% to 60% which can translate into a cost savings of up to $8 billion annually (March/April 2008, vol 98, no 2, Journal of the American Podiatric Medical Association).

Phase out the two Year waiting period for Medicare coverage for people with severe and long term disabilities.   

While most of the approximately, 2 million amputees under the age of 65 are able to work full-time and maintain health care coverage under employer-supported insurance plans.  However those with less functionality may seek public health coverage under programs such as Medicare for severe and long term disabilities.  Unfortunately, there are several policies that are currently impeding Medicare recipients from reaching their full potentials. 

Phase out the two Year waiting period.  Unlike older Americans, who typically enroll and become eligible for Medicare coverage within months of turning age 65, disabled beneficiaries must wait two years before their coverage takes effect. Legislation to phase out the waiting period over ten years has been introduced in the House and Senate (HR 154/S 2102).  As President Obama’s administration works to address America’s health care crisis, we urge you to place a high priority on closing the gap in coverage that affects a group of Americans most in need of guaranteed access to health care—people with severe disabilities who are waiting to become eligible for Medicare coverage.

Modify the “in the home” restriction on Medicare coverage for assistive devices to allow for coverage for community use. 

Currently, Medicare only provides coverage for mobility devices that are necessary for use inside a beneficiary’s home.  They will not provide an assistive device if they need it to return to work or participate in activities such as church or school.  The Medicare Independent Living Act of 2007 (HR 1809) eliminates the "in the home" restriction on mobility devices. The ACA is calling on the new administration to modify the “in the home” restriction through the regulatory process in order to improve access to the community for people with disabilities.  This will allow people to have access to the devices they need to go to work or school, to get to a doctor’s appointment or just live a more active, independent life. 

Work with disability rights groups to ensure access to public transportation, a basic tenet of the Americans with Disabilities Act (ADA). 

While the ACA appreciates steps that have been taken by the Transportation Security Administration (TSA) to develop best practices for regulations concerning people with disabilities, there is still much work to be done in terms of developing strategies that balance the security needs of the general population with the privacy rights and transportation access of amputees.  In addition to overall policy development, the ACA looks to the TSA to review the training procedures for security personnel in order to maintain consistent enforcement of regulations. 

Partner with the ACA and other disability rights organizations to ensure access to prosthetic and other assistive devices in any comprehensive health care package or health system overhaul.

The ACA is thrilled to hear about the efforts that President elect Obama and members of Congress are making to see to it that all Americans have access to health care.  We are concerned that important items like prostheses and assistive devices that are utilized by a small portion of the population will be left out of the discussion.  It is important that prosthetic care is not left out whatever administrative or legislative solutions the administration looks to advance.

We look forward to working with President-elect Obama and his team to address important issues that affect not only people with limb loss, but others with disabilities. 

Thank you for your attention to these views. As the transition progresses, if we can provide you with any additional information, please contact ACA National Advocacy Director Morgan Sheets at 202/302-4373 or msheets@amputee-coalition.org.

Sincerely,

Kendra Calhoun                                      Morgan Sheets
President & CEO                                     National Advocacy Director