The ITEM Coalition sent CMS a sign on letter stating our serious concerns regarding the February 27, 2014 joint Durable Medical Equipment (DME) Medicare Administrative Contractor (MAC) Coverage Reminder (Reminder) for Speech Generating Devices. To see that letter and our other coalition letters, please click here.
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The ITEM Coalition has launched a survey looking at access to medical devices and assistive technology for people with disabilities. The survey also seeks to find differences in services for respondents in the Competitive Bidding Program Phase 1 areas compared to respondents in non-Phase 1 areas.
Thus far, the survey has had 87 respondents. The vast majority (80%) currently receives Medicare benefits and nearly a half (44%) receives both Medicare and Medicaid benefits. Nearly all of the respondents are younger than 65 (87%) and use medical devices or assistive technology every day or almost every day (87%). The most common devices used are wheelchairs, support surfaces, such as mattresses and overlays, and walkers. Many respondents use multiple devices and have been using devices for more than 10 years (58%). The vast majority have not heard about the Competitive Bidding Program (75%). Many have encountered problems in the past two years acquiring new equipment or repairing old equipment (72%).
Phase 1 Respondents
Of the 87 respondents to the survey, only six come from a Competitive Bidding Program Phase 1 area. These respondents mainly answered the same way as the overall respondent base, but do report a higher percentage of problems in the past two years acquiring new equipment or repairing old equipment (87%). Additionally, despite repeated attempts by CMS to informing users in the Phase 1 areas, four of the six Phase 1 area respondents had not heard of the Competitive Bidding Program.
The biggest area of concern the survey has shown thus far is the amount of problems respondents have had in the past two years acquiring new equipment or repairing old equipment. Many respondents have had multiple problems. The 49 respondents who have had a problem in the past two years combine to report a total of 99 problems. The most reported problem is delay in delivery of a product (20%) followed by difficulty in contacting provider for repairs/assistance and supplier not providing the needed device (both at 13%).
Phase 1 Stories
One of the problems most reported by Phase 1 respondents is the inability to obtain the needed equipment. Whether it is due to Medicaid restrictions or a lack of the supplier carrying the product, these individuals and their families are forced to rely on equipment that isn’t suitable for their needs.
“Medicare doesn’t pay for the model of chair that meets my activity level, helps me maintain my independence, and ensures my safety. Medicare only pays for the lower end model wheelchairs that do not have the same shock absorption, stability, drive control, and speed as the higher end models. As an active user that frequently drives my chair around town, the extra speed, control, and stability are needed to maintain an active and independent life and to be safe and comfortable in the community.”
– Jason from Kansas
“My daughter has Spina Bifida. She will continue to use assistive technology and medical devices the rest of her life. She uses both crutches and wheelchairs for mobility and leads a very active life. She uses proper cushioning to prevent pressure sores. She also plays wheelchair basketball and other Paralympics sports and needs specific equipment to be able to do this. Staying active is very important for her health and weight.”
– Robin from Texas, whose supplier does not provide the devices needed
“My son, age 52, has severe traumatic brain injury and is total care. We have to use a wheelchair and it is difficult getting the right one. I have one now that is supposed to be a lightweight wheelchair but it is still heavy for me to take out of the car. I am 73 years old and take full care of him.”
– Arlene from Florida
Non-Phase 1 Stories
“I had to purchase my scooter myself and my walker was paid only partially by Medicare. I use the walker for short distances but need the scooter for longer distances. Medicare does not consider the scooter necessary because I use the walker inside my home.”
– Jean from Pennsylvania
“Justin received his first power chair when he was two and a half years old. He is using his third augmentative communication device after receiving his first when he was three years old. He depends on assistive technology for increased independence and being included in our community. He is a straight-A ninth grader taking all regular education classes and would not be where he’s at today without assistive technology.”
– Kris from Minnesota
“My current frustration is that Medicare does not pay for devices to assist in the shower. I need something different than a movable bath bench. I need something more stable that I can transfer onto for a shower. The shower wheelchair I purchased was not covered by Medicare, I paid for it out of pocket. It is 4-6 inches too high for me to use independently.”
– Barbara from Illinois
“Only cheaply made equipment ends up being available when the bidding process is in effect. The junk that is offered does not match what we require to live like normal people. Some people cannot leave their house because the wheelchair they received cannot operate outside.”
– Anonymous from Pennsylvania
The Myositis Association serves patients with all forms of myositis through patient/physician education, support groups, research and advocacy. TMA has 45 support groups and conducts an Annual Patient Conference. Many of those with myositis require assistive devices as the disease destroys quadriceps and muscles in the hands, arms and shoulders. Learn more at: http://www.myositis.org/
The American Cochlear Implant Alliance has joined the ITEM Coalition! To learn more about the importance of CI, please visit their web site: http://www.acialliance.org/
Today the ITEM Coalition submitted to the National Association of Insurance Commissioners a steering committee letter strongly recommending against finalizing recommendations to allow Medigap plans to require beneficiary copayments for coverage of POVs. See our letter NAICModel651.
The ITEM Coalition will have a booth at the advocacy pavillion of the Medtrade Conference in Atlanta, Georgia this month. Please visit our table if you are there!
4/25/12: Representative Joe Crowley (D-NY), a member of the House Ways & Means Committee, has introduced HR 4378, the “Ensuring Access to Quality Complex Rehabilitation Technology Act of 2012.”
On April 16, Rep. Crowley introduced the bill, “Ensuring Access to Quality Complex Rehabilitation Technology Act of 2012.” Click here to view a final draft of the bill, since the GPO has not yet released their official version. The ITEM Coalition has drafted a letter asking members of the House to co-sponsor the bill.
Background on the underlying patient access issues the bill addresses:
Complex Rehab Technology entails a broader baseline of services than those that are currently referred to under the Medicare program as “durable medical equipment” or “DME.” CRT is prescribed and customized to meet the specific medical and functional needs of individuals with disabilities and medical conditions such as, but not limited to, Cerebral Palsy, Muscular Dystrophy, Multiple Sclerosis, Spinal Cord Injury, Amyotrophic Lateral Sclerosis (Lou Gehrig’s disease), and Spina Bifida. However, because CRT is currently coupled with the more general DME benefit, these patients face a series of challenges trying to access the appropriate and necessary technologies and services.
HR 4378 addresses those challenges by:
- Ensuring access to appropriate products and technology based on a person’s functional needs, rather than diagnosis;
- Allowing individuals to access devices that can be used outside of the home and in the community, allowing individuals to work and participate in community life; and
- Ensuring access to local CRT suppliers equipped to make repairs and maintenance for specialized devices.