News from NSCIA: May 2014

Frieden2Lex Frieden Speaks at Civil Rights Summit
Lex Frieden, a United Spinal board member who played an integral role in the development, passage and implementation of the Americans with Disabilities Act, participated in a social justice panel discussion at the Lyndon B. Johnson Presidential Library in Austin, Texas, as part of the Civil Rights Summit that took place April 8-10.

Frieden talked about the linkage of the ADA with the Civil Rights Act of 1964, why disability rights are civil rights and how the discrimination faced by people with disabilities is similar to that faced by people of color, women and LGBT individuals. He also emphasized how important community integration is to the over 50 million people with disabilities living in the U.S. today.

“No one should have their ambitions, dreams or opportunities stifled by discrimination. The Americans with Disabilities Act and other civil rights legislation have established a fundamental framework for nondiscrimination on the basis of disability, but we have yet to experience the full impact of those provisions. The dreams and ambitions of many people with disabilities have yet to be realized. Significant disparities in housing, transportation, employment and community living by people with disabilities are evidence of the need for us to continue our fight for civil rights and equal opportunity,” says Frieden.

The panel discussion immediately followed the keynote speech by President Barack Obama. Other panel participants included former Atlanta Mayor Shirley Franklin, humanitarian Maria Shriver, athlete and philanthropist David Robinson, and businessman Steve Stoute.

Under immense national pressure from disability rights advocates to include disability rights as part of the Civil Rights Summit celebrating the Civil Rights Act of 1964, Mark Updegrove, director of the LBJ Library and main organizer of the summit personally reached out to Frieden and invited him to participate on the social justice panel as a civil and disability rights activist.

Help Improve Access to Wheelchair Repair
Wheelchair repair is essential to a wheelchair user’s mobility, independence and ability to contribute to and participate in society. However, access to wheelchair repair services is being restricted by Medicare’s policies.

It is critical that wheelchair users have access to a Medicare supplier with trained and experienced service technicians and the infrastructure and inventory to be able to repair the equipment they rely on. Please take a minute to complete this quick online survey about your access to wheelchair repair so we can share the results with Medicare officials and policymakers: www.surveymonkey.com/s/wheelchair-repair

You can also help by telling Congress that Medicare must improve access to wheelchair repairs now. Use this linked form to easily send an email to your Representatives and Senators with just the click of a button: http://goo.gl/UrRRmz

United Spinal, MS Society Join at Policy Conference
United Spinal Association joined multiple sclerosis activists from around the country on March 10-12, during the National MS Society’s Public Policy Conference in Washington, D.C.

The conference’s goals were to urge Congress to:
• support promising treatments for MS in the pipeline

• support access to complex rehabilitation technology or medically-necessary products — such as individually configured manual and power wheelchairs, seating and positioning systems — that require evaluation, fitting, design, adjustment and programming

• join the Congressional MS Caucus to create policy solutions to the challenges facing people with MS and their families.

On March 11, Alexandra Bennewith, United Spinal’s vice president of government relations, presented on why it’s important to ensure people with disabilities, including those living with MS, have access to CRT and how the right wheelchair and mobility equipment can lead to greater independence and quality of life.

“Congress has come to recognize the difference between standard durable medical equipment and complex rehab technology. With the active support from advocates from United Spinal, National Multiple Sclerosis Society, National Coalition for Assistive and Rehab Technology adding up to at least 50 provider and consumer groups agreeing that there is a need for better access to customized wheelchairs, I am confident that we can enact the Ensuring Access to Quality Complex Rehabilitation Technology Act,” says Bennewith.

A-Brehm-FamilyWelcome New Board Member Darren Brehm
In early April, United Spinal appointed Darren Brehm, a Kraft Foods director and wheelchair user from Northbrook, Ill., as a member of its board of directors.

Brehm will utilize his business experience to assist United Spinal in optimizing its strategy, programs and sustainability so the organization can better serve more individuals living with spinal cord injuries and disorders nationwide.

“I was interested in joining the board because I want to serve the community of individuals with spinal cord injuries and disorders and I see my involvement with United Spinal as a fantastic vehicle to achieve this goal,” says Brehm.

“Since becoming involved with United Spinal, I have come to find that I am very aligned with its mission. I also have found its leadership very impressive and engaging. I look forward to working together with all the board members to achieve great things for the disability community during my tenure,” adds Brehm.

Brehm currently works as associate director of North America Ingredients Procurement at Kraft Foods. In that capacity, he successfully manages a $950 million budget to enhance productivity, supply and lead innovation with a team of 13 procurement professionals.

Prior to working at Kraft, Brehm was engagement manager at McKinsey & Company where he fostered client relationships, led teams and built client and team capabilities.

“It’s an honor to welcome Darren to our board of directors. Besides being a proven leader and talented business professional, Darren has a thorough understanding of the issues facing people with disabilities. He will be a tremendous asset to United Spinal as we embark on new and exciting initiatives,” says Joe Gaskins, president and CEO of United Spinal Association.

Brehm received his master of business administration from Harvard Business School in 2007, graduating in top 10 percent of his class. In 2002, he received his bachelor of science degree in business administration from San Diego State University.

Among his community accolades, Brehm served as peer ambassador at the Rehabilitation Institute of Chicago to help individuals with spinal cord injuries transition back into their communities.

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