found it all,,,
my letter to my Congessman, PLEASE feel free to edit and pass on yours
My husband was diagnosed with ALS in 2011. It has come to my attention that there are changes happening in the CMS Medicare rules that will affect his access to specailized medical equpmtment he will need in the future.
The bi-partisan legislation introduced is S. 948 and HR 942. I ask you to cosponsor and pass the Ensuring Access to
Quality Complex Rehabilitation Technology Act (S. 948/H.R. 942) and add an amendment to include speech generating devices (SGD).
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal, neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As the disease progresses, it robs ALS patients of the ability to control their muscles, trapping them in a body they no longer can
control. They are isolated and awake, aware of the world around them, yet unable to do anything about it. ALS can strike at any age, and its cause is yet unknown. Complex
rehabilitation technology, like power wheelchairs and speech generating computers, are the
only "treatments." Such devices allow them to communicate, use the computer, and movearound on their own.By creating a separate benefit in Medicare for complex rehabilitation technology (CRT), this bill protects access to medically necessary, customized CRT like complex wheelchairs and
speech generating devices for people with significant disabilities including ALS. These devices help patients remain independent and can greatly improve their quality of life. The bill also enhances quality standards for CRT, establishes clinical standards to ensure that
CRT products are being prescribed appropriately, and supports community integration by lifting Medicare's "in-the-home" restriction as well as allowing people leaving skilled nursing facilities to obtain the technology necessary to transition back into normal life.
This bipartisan legislation is supported by over 40 national organizations. Please cosponsor S. 948/H.R. 942 today to support the medical needs and independence of people living with significant disabilities, including those brought on by ALS.
I urge you to stand up for the dignity of ALS patients everywhere.
thank you
Meganne Powell
Resources:
https://www.youtube.com/watch?feature=player_embedded&v=PA_Xs7s8sdY
ALS Advocacy: How Can I Help?
http://www.access2crt.org/access2crt/home
Petition Against CMS Capped Rental Rule
Chris Klein, President USSAAC AAC Institute
