Most of you are aware that due to a drug interaction I had to cancel going to Washington D.C. last May for the 2013 National ALS Advocacy Conference. Fortunately, we were able to deliver 380 letters from many of you to both Senator Rob Portman and Senator Sherrod Brown (and to other senators because of friends all over the U.S.) by dropping them off to The ALS Association's Central & Southern Ohio Chapter's executive director, Marlin Seymour, the night before her departure. We've been informed it left quite an impression.
Well, Dorothy and I have been given a second chance to share our story with our senators! We've again been invited to attend this year's event representing the area ALS Chapter. We worked out the kinks for traveling with our trip to Florida in February and with the help of Jeremy & Megan, our children, are going to make it happen this year. We believe we represent many voices when we go and we want to properly represent yours by delivering another stack of letters to our senators!
To that purpose the third page of this email is a form letter written by the national office seeking to change a very important decision that was made by CMS to no longer purchase speech generating devices and changing to a per month rental (you can read about the concerns this raises for those of us who depend on such equipment in the letter). If you only have time to sign two letters to Portman and Brown, that's fine. Feel free to email them back to me at bcroy22@gmail.com, or snail mail them to me at 2700 Unbridled Ct., Powell, Ohio, 43065. PLEASE RETURN THEM TO ME BY SUNDAY, MAY 4!
Now, a good friend of ours who has quite a bit of experience with lobbying efforts shared with us recently that letters are even more effective if there are some words different in each letter. The second page of this email is what we are going to send as an example. If you have the time and are willing, we invite you to consider doing this. At the very bottom of this email is a short note from Marlin in response to my questioning if this effort is worth it.
Again, we cannot thank you enough for your support in all of our advocacy efforts! Feel free to forward to your family and friends as well. (Oh, my apologies if you are the recipient of more than one email. I combined numerous lists I have compiled and while I tried to catch duplications, I'm sure I missed many.)
We love and appreciate you all,
Bill & Dorothy Croy
Dear Senator Rob Portman, Dear Senator Sherrod Brown, (two separate letters!)
I'm very concerned about the decision, effective April1, made by the Centers for Medicare and Medicaid Services (CMS) changing the manner in which it pays for speech generating devices (SGDs). This decision potentially took away the voices of thousands of people living with Lou Gehrig’s Disease who rely on SGDs to communicate. I was fortunate enough to have needed mine over a year ago and cannot begin to tell you how vital it has been for communicating with others for my caregiving, staying in touch with people, and developing a blog about my journey as a form of personal advocacy. My blog is "Giving Wings to Thoughts": http://wcroy22.blogspot.ca/.
As you may know, ALS is a fatal neurological disease that robs people of the ability to control their muscles. They lose the ability to walk, use their hands and arms and ultimately the ability to breathe. The disease is fatal in an average of two to five years following diagnosis and there is no effective treatment available to slow or stop its progression. As the disease progresses, people often lose the ability to speak and therefore rely on SGDs for all of their communications needs. SGDs become a person’s window to the world. Without it, they are isolated and awake, trapped inside a body they cannot control and unable to communicate even a single word.
Under the change implemented by CMS in April, called “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs. While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:
Access: If people have an extended hospital stay, are in hospice or a nursing facility while they are in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device must be returned to the manufacturer while the patient either will have to obtain a new one from the hospital, hospice or nursing facility, or pay the entire monthly rental fee out-of-pocket. This will result in patients losing access to SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff. These institutions and facilities do not have access to SGDs, are not funded to supply the devices and do not typically have staff experienced in providing SGDs. In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.
Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device up front.
The ALS Association is working with Members of Congress to oppose this regulation and give a voice to people with ALS. I urge you to work with The Association in this fight. ALS robs people of so many things that most people take for granted. Please work with us to ensure that CMS polices do not also rob people of the ability to communicate. Please contact The ALS Association at advocacy@alsa-national.org if you would like to join this fight in support of your constituents living with ALS.
Sincerely,
Name: ________________________________________________________________
Street Address:________________________________________________________________
City, State, Zip:_______________________________________________________________
Email: ________________________________________________________________
Dear Senator Rob Portman, Dear Senator Sherrod Brown, (two separate letters!)
On April 1, the Centers for Medicare and Medicaid Services (CMS) changed the manner in which it pays for speech generating devices (SGDs) and in the process took away the voices of thousands of people living with Lou Gehrig’s Disease who rely on SGDs to communicate.
As you may know, ALS is a fatal neurological disease that robs people of the ability to control their muscles. They lose the ability to walk, use their hands and arms and ultimately the ability to breathe. The disease is fatal in an average of two to five years following diagnosis and there is no effective treatment available to slow or stop its progression. As the disease progresses, people often lose the ability to speak and therefore rely on SGDs for all of their communications needs. SGDs become a person’s window to the world. Without it, they are isolated and awake, trapped inside a body they cannot control and unable to communicate even a single word.
Under the change implemented by CMS in April, called “capped rental,” people with ALS who need SGDs will be required to rent them over a 13-month period, after which time they will own the device. Under the previous policy, people with ALS had the option to purchase SGDs up front, which is how over 99% of them obtained SGDs. While this switch may seem to be a minor change in policy, it may have significant impacts on patients. Those impacts include:
Access: If people have an extended hospital stay, are in hospice or a nursing facility while they are in the 13-month rental period, Medicare will not cover the rental fees. Instead, the device must be returned to the manufacturer while the patient either will have to obtain a new one from the hospital, hospice or nursing facility, or pay the entire monthly rental fee out-of-pocket. This will result in patients losing access to SGDs while they are institutionalized, during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff. These institutions and facilities do not have access to SGDs, are not funded to supply the devices and do not typically have staff experienced in providing SGDs. In addition, because SGDs are highly customized devices, designed and adjusted to meet the specific medical needs of each individual patient, they cannot readily be substituted with “off the shelf” technology.
Cost: People who rent SGDs for the full 13-month rental period will pay 5% more out-of-pocket than if they had purchased the device up front.
The ALS Association is working with Members of Congress to oppose this regulation and give a voice to people with ALS. I urge you to work with The Association in this fight. ALS robs people of so many things that most people take for granted. Please work with us to ensure that CMS polices do not also rob people of the ability to communicate. Please contact The ALS Association at advocacy@alsa-national.org if you would like to join this fight in support of your constituents living with ALS.
Sincerely,
Name: ________________________________________________________________
Street Address:________________________________________________________________
City, State, Zip:_______________________________________________________________
Email: ________________________________________________________________
Bill, I have seen letters have a tremendous positive effect on Members and their staff and particularly if we can walk in and physically HAND a stack of letters directly to them at the meeting -- I think it is worth it.
Regarding wording, yes, I would agree that having different wording would be the best. However, I've seen the process slowed down greatly or letters never written, if it takes too much time for someone to accomplish. I think it helps the "advocate" to not have to start with a "blank slate" so we like the idea of providing the "body" and then asking the writer to personalize the letter in at least one paragraph and to do it near the beginning of the letter. If they have limited time and you are trying to get the task out to the masses, this is the way to go. If it is a group that has more time available to them to write a compelling personal letter, all the better!
Thank you for taking this on - - my opinion is that it is definitely worth the effort.
I worked for my Member of Congress from TN on the Hill and I can tell you that we paid attention when someone walked in with a stack of letters on a particular issue and they were signed and had handwritten names and addresses included -- it was then a priority to be put before the Member to at least look at for consideration.
M.
Marlin K. Seymour
Executive Director
The ALS Association Central & Southern Ohio Chapter
1170 Old Henderson Road Ste 221
Columbus, Ohio 43220
Phone: 614-273-2572 ext. 102
Toll Free: 866-273-2572 ext. 102
Fax: 614.273.2573
mseymour@alsohio.org
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