The Gleason Act will give a permanent voice to the voiceless.

The Steve Gleason Enduring Voices Act permanently fixes the Centers for Medicare and Medicaid Services (CMS) policy that limited access to speech generating devices for people with degenerative diseases.

On May 16, 2017, Representatives Cathy McMorris Rodgers (R-WA) and John Larson (D-CT), and Senators Bill Cassidy (R-LA) and Amy Klobuchar (D-MN) introduced the Steve Gleason Enduring Voices Act (H.R. 2465), which builds upon the successes of the Steve Gleason Act of 2015. The Steve Gleason Enduring Voices Act permanently fixes the Centers for Medicare and Medicaid Services (CMS) policy that limited access to speech generating devices for people with degenerative diseases. Read the full press release here.

“Steve Gleason is a hero and inspiration to all of us, and especially to the thousands of Americans living with degenerative diseases who, like him, rely on speech generating devices to communicate with their family, friends, and doctors,” said Congresswoman McMorris Rodgers. “When bureaucratic rules threatened to silence many of them, the Gleason Act gave these individuals the peace of mind to know that their voices will continue to be heard. The Steve Gleason Enduring Voices Act ensures there are ‘no white flags’ and that access to speech generating devices continues permanently for those who need it most. This is about giving a permanent voice to the voiceless.”


History of the Gleason Act

After learning about CMS regulatory changes that limited access to Speech Generating Devices, affecting anyone who uses the device and has Medicare, Steve Gleason wrote an open letter to Congress and CMS in July, 2014. Steve’s mother, Gail Gleason, and members of the ALS Association then approached Representative McMorris Rodgers about these changes that could dramatically and negatively affect the lives of those who depend on these devices.

In September of 2014, more than 200 Members of the House and Senate—Democrats and Republicans—sent a letter to CMS to investigate this arbitrary decision. After CMS addressed only one of their concerns, Steve traveled to Washington, D.C. to meet with the heads of CMS, Medicare and legislative leaders on what could be done when legislation was noted as the only the solution.

Click here for a full timeline of the Gleason Act from start to finish.

 

What People Are Saying About the Gleason Act

“The silence and isolation that comes from losing the ability to communicate does not discriminate between types of injuries, diseases, accidents, or conditions. Most people who have severe disabilities are expected to fade away quietly and die. For me, that was not ok. With the right equipment and the right technology, these same people can live and be productive for decades. I know I speak for all who use this technology in saying – we cannot revert back to the changes that preceded the Steve Gleason Act of 2015.
 
I am grateful for Representatives McMorris Rodgers and Larson, as well as Senators Cassidy and Klobuchar, for their leadership on this issue. While this Act was passed unanimously in 2015, we ask Congress to join these sponsors to permanently ensure that people with the most severe disabilities have access to communication, and the tools to continue a productive and purposeful life.”

Steve Gleason

“We are ecstatic that Congress took this crucial step toward ensuring patients with communications disabilities have access to the technologies that allow them to speak. This bill will allow patients to better participate in their own health care, communicate with loved ones, and lead more independent lives.”

Tara Rudnicki President of Tobii Dynavox North America Market

“This initiative builds on the great efforts we’ve already achieved in giving a voice back to those with degenerative disabilities. Thanks to the continued awareness raised by Steve Gleason and the countless advocates for those with ALS and other degenerative conditions, millions in need will now have permanent access to speech-generating devices, giving them the ability to be heard as well as communicate with loved ones.”

Congressman Paulsen (R-MN)

“I’d like to thank the Gleason family and the dedicated advocates with Team Gleason, the ALS Association, and Connecticut’s own Center for Medicare Advocacy for fighting alongside individuals and families living with degenerative diseases. As a member of Ways & Means, I will work to advance this must-pass bill through the Committee to ensure that people’s’ access to speech-generating devices are protected. I am proud to stand with Rep. McMorris Rodgers and our Senate colleagues on this important, bipartisan effort to make the Steve Gleason Act of 2015 permanent.”

Congressman Larson (D-CT)

“The ALS Association strongly supports the Steve Gleason Enduring Voices Act. The ability to communicate with family and friends – and express needs to medical professionals – should not be taken away from a person living with ALS. This bill will ensure that Medicare eligible patients are able to keep their speech generating devices – at home, in the community and in healthcare settings.”

Barbara Newhouse President and CEO of the ALS Association

“Speech-generating devices aren’t a luxury for people affected by diseases like ALS and Parkinson’s—they’re a lifeline. These tools are crucial to helping people lead independent lives and stay connected to their communities. Our bipartisan legislation will ensure access to these life-changing devices for those who need them.”

Senator Klobuchar (D-MN)

“I am proud to continue the efforts of my former colleague, Senator David Vitter, who worked for years to allow those who could not speak to have a voice. These communication devices open up the world to the thousands living with speech and communication disabilities.”

Dr. Cassidy (R-LA)

“As advocates for people with Medicare, we are delighted that the Steve Gleason Enduring Voices Act will make the 2015 Act permanent. This law will provide peace of mind for extremely vulnerable Medicare beneficiaries and ensure they will never again lose their only means of communication if they need to leave home to live in a nursing facility, hospice or hospital.”

Judith Stein Executive Director at the Center for Medicare Advocacy

Steve Gleason is an inspiration to all people who want to live life to the fullest, and the Steve Gleason Act represents a huge victory for everybody who refuses to be defined by their disabilities. Steve Gleason’s “No White Flags” motto describes his persistence and leadership to stand up for everybody who wants to achieve their full potential despite life’s setbacks. Each year, over 5,000 people are diagnosed with A.L.S., and they all have something to say.
 
Today, thanks to the 2015 Steve Gleason Act, thousands of people with disabilities who were once forced to suffer in silence now have a voice so they can live life to the fullest. With parts of this law set to expire, it’s critical that Congress acts now to ensure that patients can continue to benefit from this life-changing legislation, and so that people with disabilities have greater opportunities when seeking treatments, cures and independence. I look forward to working with my House colleagues to pass this bipartisan legislation so it can quickly be signed into law by President Trump.

Rep. Steve Scalise (R-LA)


 

Supporters

Academy of Spinal Cord Injury Professionals
ACCSES
Aging Life Care Association
Alliance for Retired Americans
ALS Association
ALS of Michigan
American Association on Health & Disability
American Congress of Rehabilitation Medicine
American Council of the Blind
American Occupational Therapy Association
American Society on Aging
American Speech-Language Hearing Association
American Therapeutic Recreation Association
Answer ALS Foundation
Assistive Technology Industry Association
Assistive Technology Law Center
Association of Assistive Technology
Association of University Centers on Disabilities
Autistic Self Advocacy Network
Brain Injury Association of America
California Health Advocates
Center for Medicare Advocacy
Cerebral Palsy Association of Nassau County
Cerebral Palsy Associations of New York State
Christopher and Dana Reeve Foundation
Clinician Task Force
Colorado Cross-Disability Coalition
Compassionate Care ALS
Disability Law Project of Vermont Legal Aid
Disability Policy Consortium of Massachusetts
Disability Rights Oregon
Easterseals
Girl Power 2 Cure
Justice in Aging
Lakeshore Foundation
Legal Council for Health Justice
Long Term Care Community Coalition
Medicare Rights Center
Muscular Dystrophy Association
National Association for Home Care and Hospice
National Association of Elder Law Attorneys
National Association of State Head Injury Administrators
National Coalition for Assistive and Rehab Technology
National Committee to Preserve Social Security and Medicare
National Consumer Voice for Quality Long-Term Care
National Disability Rights Network
National Health Law Program
National MS Society
Northwest Health Law Advocates
Not Dead Yet
Perkins School for the Blind
Public Justice Center, Baltimore, Maryland
Rehabilitation Engineering and Assistive Technology Society
Smartbox
Southern Disability Law Center
Special Needs Alliance
Talk To Me Technologies
Team Gleason
The ARC of the United States
The Michael J. Fox Foundation for Parkinson’s Research
Tobii DynaVox
United Cerebral Palsy
United Spinal Association
United States Society for Augmentative and Alternative Communication
Volunteers of Legal Service Women’s Institute for a Secure Retirement

 

Professionals:
John M. Costello, MA CCC-SLP, Boston Children’s Hospital Augmentative Communication Program
Betts Peters, MA, CCC-SLP, Oregon Health & Science University
Meher Banajee, Ph.D., CCC-SLP, Human Development Center, New Orleans, Louisiana
Lisa G. Bardach, MS CCC-SLP, ALS of Michigan
Melanie Fried-Oken, Ph.D., CCC/Sp, Oregon Health & Science University
Richard Hurtig, Ph.D., The University of Iowa
Laura J. Ball, PhD, CCC-SLP
Julie Gamradt, MS, CCC-SLP, University of Wisconsin Health Waisman Center
Laurie Sterling, MS, CCC-SLP, BCS-S, Houston Methodist Hospital
Carolyn Wiles Higdon, Ph.D, Wiles Higdon and Associates
David R. Beukelman, CCC-SLP
Sarah W. Blackstone, Ph.D., CCC-SLP, National Deafness and Other Communication Disorders Advisory Council, Augmentative Communication
Julie Irwin, M.S.,CCC-SLP, ATP
Emilie Carmel F. Caga-anan, MS CCC-SLP, University of Washington Medical Center
Joni Nygard, MS CCC-SLP Attainment Company
Amy Roman, MS, CCC-SLP

See letters of support

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CREDIT: Photo by Robert X. Fogarty for Dear World. Made available by Team Gleason.