Durable Medical Equipment: Getting the Right Device

Finding the right mobility device requires thinking carefully, using experts, and, sometimes, taking political action.

by Amy Meisner-Threet, MSW

Elizabeth Bullard, OTR, has worked with hundreds of patients, including many who have lost mobility due to multiple sclerosis (MS) She has seen many patients injured unnecessarily.

“Mobility loss is a major and significant treatment challenge for thousands of people of people living with MS,” states Bullard an occupation therapist (OT) and Director of Case Management Northern Colorado Rehabilitation Hospital in Johnston, Colorado.

A 2008 Harris Interactive survey of more than 1,000 MS patients found that 37% were embarrassed to use a mobility device, 36% said they didn’t use mobility devices as often as they should. The findings were troubling in light of the numbers of people with MS who experience mobility problems: 64% of respondents reported that they had lost their balance, 54% that they had trouble walking, 35% that they were unable to walk, 13% stating that they only walked about twice a week.

Safety Checklist

To address these problems, Bullard has developed a safety guide checklist for people to use before working with their specialists to choose a suitable mobility devices:

• In many cases, patients choose mobility devices without speaking to their doctors or other experts. Choosing a device that is not appropriate (too much, too little support) can be dangerous and cause further decline of mobility for some patients.
• Training to use the device correctly is key. Before using a device, patients should consider participating in a hospital or clinic-based training course.
• Plan ahead. Think about the best route to take using a mobility device. Avoid heavy traffic, busy roads, small sidewalks, etc.
• Avoid “Mobility Under the Influence (MUI)”—not just from alcohol but from medications that can cause severe drowsiness and fatigue.

“In the past decade the number of people injured using mobility devices, (cane, walker, wheelchair, scooter, etc.), has more than doubled,” Bullard has written in a an article for Disaboom.com. “Over 100,000 people treated in the US for injuries related to wheelchairs and other mobility devices occurred [in 2007] alone. Often the cause is not the malfunction of the device, but that many people choose the wrong device for their needs or use the devices incorrectly.”

Bullard told me that “Getting equipment is like buying a car: you can’t buy off the shelf. Consumers must understand that getting supplies is a process.”

She recommends going to someone with a clinical background—an OT or physical therapist in a wheelchair clinic. “One must get the correct measurements, not just for the day, but to plan for all scenarios,” she said.

Do Your Homework

Jean Minkel, MA, PT, author of United Spinal’s free publication “Mobility Alternatives: From Canes to Wheelchairs“, echoes this very thought and adds some criteria to consider when looking for the right device.

“Careful consideration of what you want to be able to do will help focus your choices,” she writes. “You must prioritize your functions to identify the features you’ll need….An important first consideration is: where will you have the most trouble getting around? If ambulation, even with an assistive device like a cane or a walker, is not an option, then you will be a full-time wheelchair rider. If walking around your home or other small spaces is not a problem, then you may be only looking for equipment to increase your community mobility or allow you access to recreational and leisure activities.”

Minkel suggests reviewing your mobility requirements for environments you frequent every day: home, community, and work/ school/volunteering activities:

• Home: Critical features of the wheelchair will affect your ability to transfer (getting in and out of the chair). What is the height of the seat from the floor? How does that height compare to your bed, for example? How do the armrests or foot supports move to make your transfer easier? What is the overall width of the chair? Will it fit through your doorways?
• Community: How do you want to travel in the community? Do you need to fold the walker when riding in the car? If you are using your arms or your legs to propel a manual wheelchair, will you get too tired just getting to the store or to visit friends? Would a power option (power assist wheels, power chair or scooter) provide a more efficient method of getting around? Are there sidewalks and curb cuts or are you “sharing the road” with cars and trucks? Do you want to be in the great outdoors—trails, grass, gravel? Or are you a “mall walker”—preferring smooth finished floors and wide open doorways? Your choice of tires, wheels, and type of base can make a world of difference getting around the store versus hitting the trail.
  
• Transportation: Where you live and what your transportation options are will have a major impact on your choices. Public transportation––buses or trains– –are increasingly accessible for wheelchair users, providing you want to go where the bus is going. Private transportation, (i.e., owning your own vehicle), gives you the most flexibility and freedom, but fitting your mobility device into the car will present a series of questions. Can the chair or scooter fold? Can you store it in the trunk or within the car? Can you get it in the trunk and then walk to the car door? Many wheelchair and scooter users find that a van or a minivan––especially one adapted with a ramp or lift–is a the real key to independent mobility. But modified vans are expensive. For many people, they are just not an option.

Beyond the Physical Obstacles

As a user of assistive devices myself, my only addendum to this is that people with mobility impairments—including me—have great obstacles in getting fitted properly for these devices and in having proper patient education in using them. This is either because our service providers don’t make us aware of the best resources, and insurance companies and Medicaid/Medicare put obstacles in our paths making it difficult to acquire the best devices for us in a reasonable amount of time and for a reasonable amount of funding.

Pamela Bates, who chairs the disability committee of Al Sharpton’s National Action Network in New York City, is a user of DME herself. She has been involved in trying to reverse a ruling in New York State that closed several Medicaid offices around the state, including one in New York City that handled about three-quarters of all cases, and necessitated having all orders for Medicaid-covered DME go through a central office in Albany. The result of this consolidation was a tremendous backlog of cases. Problems persist today as the office still hasn’t been re-opened. The biggest delay occurs in linking those who do repairs on DME’s and the insurance companies. The consumer is the one that suffers.

Bates pointed out that this has left people in New York stuck at home. “My wheelchair is my legs,” Bates says. “There are times I can’t even walk around my own apartment. I have been forced to go into my own pocket to pay for repairs that Medicaid and Medicare are taking too long to take care of.”

People who need assistive durable medical equipment should seek to align with their PT, OT, and social workers affiliated with the clinics, hospitals and doctors offices that they go to. Don’t give up fighting for what you need, and know that your struggle will make a difference for the person coming next.

Amy Meisner-Threet, MSW, is a frequent contributor to Action.