On April 1st, the Center for Medicare and Medicaid Services (CMS) instituted new rules for Durable Medical Equipment (DME). CMS has now reclassified certain categories of DME, including Speech Generating Devices (SGD's) from "routinely purchased" to something called "capped rental".
Since April 1st, anyone, like me, who needs an SGD, will have 13 months where the device is rented by CMS (a more expensive option than a purchase by the way). If the user of the rented SGD goes into a hospital or nursing home for an extended period CMS has the discretion to take the device away - at a time when communicating his/her wishes is most crucial.
Make no mistake, SGD's are highly customized to the individual. Every speech impaired individual has a need for different data entry methods. Some can type, many autistic children tap icons, many ALS patients eventually require eye gaze capability and still others with limited use of hands and feet use a scan and switch system. The idea that a speech impaired person can be provided with a generic speech device at a nursing home or hospital, and communicate effectively, is simply not practical.
But it gets worse. Since the inception of SGD's, CMS has restricted these devices as Speech Generating Devices only. They have required SGD makers to "lock down" any additional functionality. In 1991 this wasn't a big deal. Think about what you had for a cell phone in '91 (if you even had one). As time and technology have progressed, SGD makers have added functionality such as email, text messaging, voice relay calling and even social media like Facebook and Skype. All tools the average10 year old has on their smart phone today. And all tools which greatly enhance the lives of disabled individuals to remain connected socially.
Prior to April 1st, CMS allowed beneficiaries to pay makers of SGD's to "unlock" the additional functionality. That is no longer possible under the new rules. Most SGD makers are so confused by the April 1st ruling passed down by CMS, they'll are erring on the side of caution and have stopped "unlocking" devices since April. As of September 1st, CMS will become more vigilant about ensuring SGD's under the capped rental rules, are all "locked down".
The American with Disabilities Act (ADA) states:
"Findings. The Congress finds that
(1) physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society, yet many people with physical or mental disabilities have been precluded from doing so because of discrimination; others who have a record of a disability or are
regarded as having a disability also have been subjected to discrimination;
(2) historically, society has tended to isolate and segregate individuals with disabilities, and, despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem;
(3) discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services;
(4) unlike individuals who have experienced discrimination on the basis of race, color, sex, national origin, religion, or age, individuals who have experienced discrimination on the basis of disability have often had no legal recourse to redress such discrimination;
(5) individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities;
(6) census data, national polls, and other studies have documented that people with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally;
(7) the Nation's proper goals regarding individuals with disabilities are to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for such individuals; and
(8) the continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous, and costs the United States billions of dollars in unnecessary expenses resulting from dependency and nonproductivity."
There's a lot to chew on above, and the current document of the ADA is detailed and comprehensive. The bottom line is, for the sake of this discussion, is that CMS is discriminating against the 2.5 Million speech disabled individuals in the US by barring access to important modes of communication which are now ubiquitous throughout society. In doing so, they are violating the spirit, if not the letter of the ADA.
Did you know any of this? My Neurologist, who sees dozens of ALS patients each week, didn't. Eight years ago, I frankly wouldn't have cared because it didn't affect me...yet.
Our foundation has been communicating with ALS advocates, makers of SGD's, both Houses of Congress and the Disability Rights Center here in Maine about this issue.
Wanna help? Pick up the phone and call your Congressional Reps. Tell them what you think about this. CMS's rule change is more expensive and more discriminatory than their prior rules. They can't (or won't) provide solid rationale behind their decision. Is it possible they are seeking to generate cost savings by forcing more speech impaired individuals to purchase their own, fully functional SGD's rather than go through Medicare? By the way, many of these devices run between $10,000 to $20,000 - well beyond the financial reach of
the disabled.
Read the CMS Coverage Reminder for yourself:
http://www.cgsmedicare.com/jc/pubs/news/2014/0214/cope24807.html
To find contact info for your Congressional Representatives:
http://www.congressmerge.com/onlinedb/index.htm
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