ALS Advocacy Victory: Access to Complex Rehabilitation Technology Preserved

As ALS progresses, people living with the disease heavily depend on complex rehabilitative technology (CRT), especially their personally customized power wheel chairs. The ALS Association played a critical role both through direct lobbying and grassroots advocacy to win support for legislation to convince the Centers for Medicare and Medicaid Services (CMS) to abandon plans to apply competitive bidding to CRT. This makes it possible for people living with ALS to continue to obtain the CRT equipment that is customized to their needs.

CMS made this decision after bipartisan legislation (S.1132/H.R.2465) to ensure access to CRT, which was supported by 79 Representatives and 8 Senators. The ALS Association unwaveringly worked to achieve this success by making this legislation a priority at the National ALS Advocacy Conference and encouraging advocates to contact their Members of Congress. Read more to learn about this exciting legislative win.

CMS’s durable medical equipment benefit for complex rehabilitative technology (CRT) was drafted over 40 years ago. Since then, CRT equipment has advanced radically.  CRT products include power wheelchairs and the personalized accessories that go along with it, such as: custom head support and seating systems, mounting hardware, adjustable leg rests and more to help meet a person’s unique medical and functional needs.

Complex power wheel chairs
Examples of complex power wheelchairs

Of great concern to The ALS Association was CMS’ determination over the past several years to move CRT into a “competitive bidding” process that would make it much harder for people living with ALS to secure and maintain personally customized wheelchairs and accessories. Again and again, CMS announced their plans to do so.

Based on advocacy from The ALS Association and others, Congress has repeatedly rejected CMS’ plan to apply competitive bidding to CRT. If the CMS plan passed, it would mean that people who used this equipment would face numerous challenges when trying to access the appropriate equipment.

After a long fought battle, the ALS community achieved a very important victory! On June 23rd, 2017, the CMS announced that it has abandoned plans to apply competitive bidding rates to CRT Power Wheelchairs, which was set to go into place on July 1, 2017. Finally, CMS got the message that Congress wants to be sure that people living with ALS and other neuromuscular diseases who rely on CRT continue to have access to medically necessary CRT equipment.

The ALS Association worked closely with the National Coalition for Assistive & Rehab Technology (NCART) on this very important issue. This success wouldn’t have been possible without the tremendous grassroots efforts from our advocacy community reaching out to their local legislators. All of the emails, meetings and outreach was listened to and acted on. CMS dropped its plans that would have made access to CRT much more difficult because of the pressure they felt from Congress.  As a result, people living with ALS will be protected from drastic reductions in access to specialized equipment that is medically necessary. Today, we can celebrate this win for our community, and recognize that our voices matter and are being heard!

A copy of CMS’ statement on Access to CRT can be read here: https://www.cms.gov/Center/Provider-Type/Durable-Medical-Equipment-DME-Center.html

Be sure to thank your Senator or Representative if they helped make this possible. Our supporters in New York are Senator Kirsten Gilibrand (@SenGillibrand) and Representatives Tom Suozzi (NY-3; @RepTomSuozzi ‏), Kathleen Rice (NY-4; @RepKathleenRice ‏), Grace Meng (NY-6; @RepGraceMeng ‏), Jerry Nadler (NY-10; @RepJerryNadler ‏), Joe Crowley (NY-14; @repjoecrowley ‏), Eliot Engel (NY-16; @RepEliotEngel ‏), and Sean Maloney (NY-18; @RepSeanMaloney ‏). In New Jersey, we can thank Representatives Leonard Lance (NJ-7; @RepLanceNJ7 ‏) and Albio Sires (NJ-8; @RepSires ‏) for their support.