Stay Ahead of Equipment Needs

The right equipment at the right time can help PALS live longer and more meaningfully. The process of obtaining DME and the reimbursement available varies widely by country, so the points below apply best to non-veterans who have Medicare and/or private insurance in the US.

If you receive services from the VA, check with your center as to how best to obtain the items below.

If you are outside the US, check with your national health service or other payor as to what equipment is reimbursed and from whom/how it is obtained. Those in countries where a full range of equipment is unavailable can utilize a forwarding service in a country to which the equipment you need can be shipped.

The first questions to ask when considering a piece of equipment or medical supplies are:
• Do you need to buy new or will used suffice? If used could suffice, is it available person-to-person? Sometimes even new medical supplies are “freecycled” because someone no longer needs them, yet they are difficult to sell— check for the freecycle listing in your town. And Craigslist, neighborhood classifieds, NextDoor, etc. You can also post a “wanted” listing. Maybe your local ALSA or MDA chapter has a loaner (frequently the case for lifts and sometimes for power chairs).
• Does this require a prescription, if not a person-to-person purchase?
• What is its retail value?
• What is its street value?
• If supplies, can you save by buying in bulk? Keep in mind that the largest size is not always the best deal.

Always compare apples to apples, e.g. if a gallon of No-Rinse Shampoo is $25.99 and a three-pack of 16-oz bottles is $18.99, you are getting a better deal on the three-pack. Amazon is a great place to compare prices across available sizes, as is eBay. Some items that it pays to shop in Amazon for include vitamins/supplements/OTC medications (it may pay to buy multi-packs); wipes, gauze, bandaids, sprays and other hygiene supplies; cervical collars, braces, other small durables like plastics; etc.

What is Durable Medical Equipment (DME)? 
“Durable” applies to things like beds, lifts, commode chairs, wheelchairs and ventilators/BiPAP and is the opposite of “disposable,” which applies to things like wipes and gauze that are thrown away, or cervical collars, that are not very costly.

By Medicare’s definition, a DME item has to have a useful life of at three years, and most items become fully replaceable after five years at most. In the US, disposable items are generally not reimbursable except in conjunction with home or hospice care, and/or certain types of DME, e.g. tubing for tracheostomy care, masks for BiPAP use, etc. “Convenience items” like grab bars or toilet seats are hardly never reimbursable, except possibly by Medicaid or the VA.

DME reimbursement is determined by the DME benefit in your policy, which usually entails a copay for purchase cost or monthly rental (usually 10% or 20% for in-network providers) up to an annual maximum for out-of-pocket expenses across all your copays. Reimbursable items typically require a prescription and/or prior authorization. Further justification such as chart notes and a letter from a clinician are increasingly required.

Frequently, decisions and recommendations by clinicians, salespeople, ATPs and organizations are influenced by two things: their convenience — it’s unavoidable that they know some people and options better than others— and money, which flows in various ways around the medical equipment world. Everyone wants to help you, but it’s human nature to want to do it their way.

It’s your comfort, and, at the end of the day, your money that is at stake, so double-check the choices that may affect these. If someone says, “Most patients—“ reframe your question more specifically, e.g. “Patients with my level of immobility? Patients that have already failed Product X?” If the answer boils down to, “We’ll have to try…I’m not sure what will work best…” it’s time to hit the Internet and at least satisfy yourself that no better answer exists.

You do not have to use the DME firm that your clinic recommends, or one at all; the vast majority of items are available for cash on line; some, such as suction machines and PAP masks, can very easily be cheaper via cash purchase than through insurance rental or purchase, especially when considering the value of your time in processing paperwork. Even with items that require an rx, such as BiPAP, you can purchase a machine on your own using a doctor’s prescription just as for glasses or contacts.

It's often more cost-effective to at least consider obtaining third party reimbursement, aka insurance, when you are looking at big ticket items such as a new power wheelchair, new hospital bed, CoughAssist, oscillation device (“The Vest”) or a ventilator that is more than a BiPAP, e.g. the Trilogy, Stellar or Astral, in other words any respiratory assist device that weighs more than a couple of pounds. SecondWind CPAP sometimes has older Trilogy or Astral machines, so check there first.

Some patients first become aware of local DME suppliers, many of which are branches of national companies, at local ALSA or MDA events. While their sponsorship of these events and organizations is commendable, it is no substitute for the personal service you deserve. Medicare has a Web site where you can type in a particular piece of equipment and see what suppliers are in network in your area. You can also use medicare.gov to compare Medicare plans, using your current rx as part of the equation.

If you choose not to use a DME firm, you will forego “training” on the equipment and have to organize/pay for any necessary repairs yourself. “A la carte” repairs and upgrades for some equipment, even power wheelchairs, is increasingly available, especially in certain states, and through national resellers such as SpinLife that are building repair networks.

As far as orientation to the equipment, in addition to brochures, “training” is often available free and on-demand, via videos on YouTube and manufacturer sites, PDFs on the Web (Google first; many excellent resources have been posted by others) and other resources. Or you can post questions here on the forums.

If you do seek reimbursement for an item, you can use any DME on your plan’s list (you may incur greater costs or no coverage at all by going out of network; check your plan benefits summary).

Of DMEs that you can use, at least one of those suppliers can and should order equipment that you need, if they do not stock or routinely order it. Good DMEs are also skilled at obtaining reimbursement for equipment features that are a bit out of the ordinary, either by knowing how to justify them or how to get your OT, PT or doc to justify them. That may include "closer to nature" tube formulas like Whole Story, Real Foods, and Liquid Hope. Kate Farm is not currently recommended due to high sugar content.

For some items, such as hospital beds and lifts, you will probably only be reimbursed a portion of the total cost because, for example, power lifts/beds are not always covered, so you will get reimbursed for what a manual lift costs.

When you are first diagnosed, you may need a cane, walker and/or manual wheelchair as the disease progresses. Medicare and private insurers will only pay for, essentially, one vehicle every five years, so you do not want to use that benefit on a manual chair, which is over ten times cheaper than a power chair. Likewise, although you might be able to make use of an electric scooter for a while, if you get it reimbursed through insurance, you likely won’t be reimbursed for the power wheelchair you will ultimately need.

If you are in “traditional Medicare,” most DME is rented, under a capped rental (13 months) after which you own the item. Medicare Advantage may even be more restrictive, e.g. continuing rental indefinitely.

Complex rehab power chairs, like PALS need, are an exception to capped rental since they are customized to the person. However, every maintenance or service performed on the chair, including new batteries, which chairs usually need about every 12 months, may be be billed separately. An assistive technology specialist from your DME firm or clinic will write up the order for your new chair.

DO NOT use Medicare for a manual wheelchair, because you may have difficulty getting reimbursement for the much more expensive power chair.

Make sure the final paperwork (yes, you need to read it) includes tilt, recline, seat elevator (which some manufacturers such as Permobil, may subsidize for ALS patients in need if not reimbursable; ask your ATP) and elevating foot rests. You will also need a better cushion than the one that comes standard with the wheelchair, and probably a non-standard back cushion as well.

Although it is wise to plan ahead, since getting a script, authorization and the purchase/delivery process can take time, you can still wait until there are signs of trouble in a particular area. If you have trouble swallowing, yes, start looking into a PEG tube (preferably a RIG, placed in Radiology). If you have difficulty standing or walking, it’s time to think about a wheelchair. But some PALS remain able to walk, talk and/or eat throughout their lives. And prices in some categories are declining as technology and production methods allow for lower prices and greater selection. So don’t jump too soon.

No one site or catalog is always the cheapest on every item so price-shopping saves money. Ironically, Amazon is cheap on some items and insanely expensive on others, because it mostly hosts other vendors’ listings and those tend not to offer free shipping, whereas other Web sites frequently offer free shipping at a certain total order level.

Many clinics push a catalog formerly called Sammons Preston, now Patterson Medical. This catalog, ironically, is often the most expensive for common items. Its house brand, essentially repackaging other brands’ designs, is called Rolyn Prest and it too is seldom the best deal. You will see many “repackaged” items available, e.g. from major catalogs such as Sunrise. The exact same item is often available under several different brand names, so shop around for the best price, including shipping and sales tax.

Some clinics stock items, large to small, that may help you and they will provide them directly, billing insurance if applicable. if your ALS clinic or ALSA/MDA chapter gives or lends you something, it may not be the best thing. If it doesn’t work well, keep looking.