ISSUE: Recent Medicare changes that will be effective 9/1/14 are drastically reducing or inhibiting access to the technologies that provide people with disabilities the ability to communicate.
DEADLINE:
YOUR REPRESENTATIVES/SENATORS MUST ACT BY 8/27
ACTION:
1. SIGN CHANGE.ORG PETITION
2. Reach out to your individual state representatives and senators NOW! (Contact them on Facebook, Twitter and all social media as well!)
Find your local representative:
http://www.house.gov/representatives/find/
Find your senators:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
3. Participate in a "Call In" Day on Monday, August 25, 2014. Use the links above to find the phone numbers. Calling pulls a lot of weight, so we encourage you to dial away and ask your Representatives/Senators to sign.
Ask them to sign the letter:
"Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies."
4. Not sure about calling your legislators to voice your concerns over changes in coverage for speech generating devices? You can also call 1-800-MEDICARE. Calls to 1-800-MEDICARE are tallied by "complaint" and enough complaints about these unfair SGD policies will make a difference.
5. Email or call directly to Marilyn Tavenner, Administrator of Centers for Medicare and Medicaid Services (CMS):
Email: Marilyn.Tavenner@cms.hhs.gov
Find your senators:
http://www.senate.gov/general/contact_information/senators_cfm.cfm
3. Participate in a "Call In" Day on Monday, August 25, 2014. Use the links above to find the phone numbers. Calling pulls a lot of weight, so we encourage you to dial away and ask your Representatives/Senators to sign.
Ask them to sign the letter:
"Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies."
4. Not sure about calling your legislators to voice your concerns over changes in coverage for speech generating devices? You can also call 1-800-MEDICARE. Calls to 1-800-MEDICARE are tallied by "complaint" and enough complaints about these unfair SGD policies will make a difference.
5. Email or call directly to Marilyn Tavenner, Administrator of Centers for Medicare and Medicaid Services (CMS):
Email: Marilyn.Tavenner@cms.hhs.gov
Phone: 202-690-6726 DC | 410-786-3151 Baltimore
sample letter
sample letter
__________________________________________
RE: Please support access to communication for all
Dear Representative ________ / Senator _____________,
Recent Medicare changes are drastically reducing or inhibiting access to the technologies that provide people with disabilities the ability to communicate.
PLEASE SIGN THIS LETTER: "Ensure ALS Patients Retain Access to Critical Communication Tools; Join letter to CMS urging clarification of recent Speech Generating Device policies."
I support a girl suffering from Rett Syndrome, a neurological disorder that has left her trapped in her body unable to speak verbally or via sign language, like those with ALS. She relies on her eyes to communicate with the world around her. A high-tech speech-generating device controlled by eye gaze is her only hope for communication. Please do not allow Medicare Reform to silence her.
I urge you to stand up for the hundreds of thousands of girls with Rett Syndrome (along with other people suffering from disorders that affect their ability to speak). Be their voice, help them be HEARD.
To learn more about the proposed changes, visit www.gp2c.org/save-aac.
Most Sincerely,
[INSERT YOUR NAME BELOW SIGNATURE]
information on the changes
__________________________________________
Here is more information about the recent changes to Medicare and how they impact people with severe disabilities:
(info provided by ATIA and TobiiATI)
Capped Rental
As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGDs) used by people with ALS (Lou Gehrig's Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments when they enter a healthcare facility, such as a skilled nursing home or hospice. Taking these highly specialized devices from this patient group leaves them with no way to communicate at the patient's most vulnerable moments and at a time when medical attention is critical.
Unlocked Devices
Effective September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient's home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices, even though this is done at no additional cost to Medicare. The ability to "unlock" devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, Internet and text messages. As of September 1, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of the device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text, and even first responders in an emergency situation.
Eye-Gaze Access
Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor's and speech language pathologist's evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed a medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye-gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives.
More info:
Medicare coverage of SGDs effective 9/1/2014
Medicare Advocacy Group Blog explanation
Here is more information about the recent changes to Medicare and how they impact people with severe disabilities:
(info provided by ATIA and TobiiATI)
Capped Rental
As of April 1, 2014, Medicare implemented a policy that will begin denying payment for many of the medically necessary speech generating devices (SGDs) used by people with ALS (Lou Gehrig's Disease), Cerebral Palsy, Muscular Dystrophy, Rett Syndrome, spinal cord injuries, spinal muscular atrophy and other impairments when they enter a healthcare facility, such as a skilled nursing home or hospice. Taking these highly specialized devices from this patient group leaves them with no way to communicate at the patient's most vulnerable moments and at a time when medical attention is critical.
Unlocked Devices
Effective September 1, 2014, many severely disabled individuals will lose the ability to access SGD functionalities that provide them with the opportunity to communicate and have contact with loved ones and medical professionals who are outside the patient's home. Medicare has stated that it will not allow individuals using Medicare-provided speech generating devices to use their own funds to "unlock" the devices, even though this is done at no additional cost to Medicare. The ability to "unlock" devices allowed beneficiaries the ability to communicate and participate beyond the confines of their rooms through email, environmental controls, Internet and text messages. As of September 1, Medicare will no longer pay for any device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of the device. This change terminates any direct private communication to the doctor, therapist and clinical teams via email, from caretakers via text, and even first responders in an emergency situation.
Eye-Gaze Access
Medicare has been routinely denying coverage of critical eye-gaze technology for many SGD-eligible beneficiaries. This access method is the only point of access to operate speech generating devices for some individuals, including those with ALS. Both a doctor's and speech language pathologist's evaluation is necessary and documented in order for the patient to receive the benefit. However, Medicare continues to routinely deny eye-gaze access even when it has been deemed a medical necessity by two trained and certified medical professionals. The appeals process is now backlogged for years in the Medicare system. During that time, those who have been diagnosed with ALS have precious few months before symptoms onset that limit their ability to speak while awaiting their appeal outcome. After years of waiting for an appeal to Medicare, the eye-gaze coverage is routinely allowed, but individuals may have already passed without the opportunity to communicate with friends and loved ones or participate in their own care during the final stages of their lives.
More info:
Medicare coverage of SGDs effective 9/1/2014
Medicare Advocacy Group Blog explanation
Read article HERE.
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