People who receive a daunting diagnosis of ALS often also find themselves weathering a blizzard of information and paperwork concerning vital choices they have to make about coping with the disease.
Add in a mountain of details about pricey equipment that you may or may not need someday, and it doesn’t take much to get overwhelmed.
But foresight and realistic planning can make time your ally and stave off frustration when it comes to obtaining items that can greatly affect your quality of life.
This article offers a realistic timeline for obtaining three major pieces of equipment you’ll likely need during the course of ALS. This information should help you to avoid hassles.
Note that experts consulted echoed each other on one clear point: It’s never too early to start the process of obtaining these items. They also advise working with qualified experts who are familiar with ALS and have experience working with Medicare and other insurance providers.
Another tip: Persistence pays, said Debbie King, a health care services coordinator for MDA’s ALS Division in St. Louis. King advises MDA clients not to be shy about routinely calling a dealer to inquire about the status of an order, and to be assertive.
|Companies like Permobil offer a range of power wheelchair styles.
Price: $8,000 - $35,000
Time line: The average time between ordering a power wheelchair and starting to use it is three months, according to King, who surveyed several MDA clients with ALS.
That time usually isn’t spent at the manufacturer’s end, says one major wheelchair company.
"On average, our wheelchairs can be put together in multiple configurations normally within two days," said Anjali Weber, clinical education specialist with Permobil.
Custom or out-of-stock items may take a few days more, she said.
Most of the time is taken up by obtaining prior authorization from Medicare, insurance companies or other funding sources.
Holdups and hurdles: Paperwork, paperwork and paperwork.
To get insurance coverage for a power wheelchair, doctors and equipment dealers must fill out forms with appropriate codes, and answer very specific questions to show the device’s "medical necessity." Dealers aren’t allowed to coach doctors on how to answer questions, Weber said.
"If the CMN [certificate of medical necessity] is not filled out or not correctly filled out then a chair will be denied," she said, and the paperwork process has to be repeated.
A previous purchase of a manual wheelchair or scooter through your insurance company may also hinder the later purchase of a power chair, Weber said.
While such equipment may have value to your lifestyle, keep in mind that medical necessity has to be justified for each item, as will why one type of equipment no longer meets your needs.
"That’s why it’s so important not to use the insurance money for the less expensive equipment," Weber said.
Advice: Some equipment dealers will proceed with a sale before prior authorization is determined, and that can save time.
Also, investigate MDA loan closets as a way to try out various chairs before you buy, or as a means to tide you over while you wait for your own equipment to arrive.
Keep long-term needs in mind and select a chair with as many features as possible that will benefit your health. Plus, always make sure that the chair you select will fit into your home or other places where you intend to use it, Weber said.
Price: $2,500 - $10,000
Time line: It can take from three to six months to obtain an augmentative, alternative communication device, King said, depending on the type of device and your insurance carrier. Fortunately, Medicare and other insurance companies have begun paying for these devices in recent years.
You also may need additional time to learn how to use the device, as many are computerized and use advanced technology.
Holdups and hurdles: Again, it’s the paperwork. As with wheelchairs, every feature on a communication device has to be medically justified, King said.
According to the Web site for DynaVox Systems, a major manufacturer of communication devices, most funding sources require a speech evaluation, doctor’s prescription and letter of medical necessity.
Advice: Work with experts, such as speech-language pathologists, who are familiar with ALS.
Several manufacturers have funding departments dedicated to securing payment for their products, and will file your claims for you. The DynaVox Web site states that its funding coordinators are "aware of the coding and authorization guidelines that most insurers use."
Again, MDA loan closets can let you try out this equipment.
Price: $20,000 - $50,000, depending on features
Time line: Anywhere from one day to a month and a half.
Lowered-floor minivans are growing especially popular and are often readily available on many mobility dealers’ lots.
If you know exactly what type of van will fit your wheelchair, parking area and lifestyle, "it is possible to have a van delivered in a day’s time," said Marcus Smith, owner of Access Vans in Grosse Tete, La.
A more customized van may require a month or more, said Smith, a member of the National Mobility Equipment Dealers Association.
However, more time should be spent doing research about the type of vehicle that will meet your needs now and in the future, MDA’s King said. There are numerous choices and features to consider. They’re outlined in "When Your Plan Is a Van" in MDA’s magazine Quest, March-April 2004.
Holdups and hurdles: A major problem in the adapted vehicle industry occurs when customers go to ordinary car dealerships first. Too often, a customer who hasn’t done enough research will unknowingly purchase a van that can’t be adapted with assistive gear such as ramps or lifts.
"That salesman is going to tell them anything to sell them a car on their lot," Smith said. "Then we [mobility dealers] have to tell them the bad news that we can’t do anything with that vehicle."
A mobility dealer will look at the wheelchair user’s size, abilities, the number of people they usually travel with, and more to find the right vehicle to fit an individual’s needs, Smith said.
Price can be a big challenge for individuals with ALS who have a limited income. However, some mobility dealers offer 10-year financing packages, and have ideas for finding funding help.
Some dealers have a consignment policy that will help you resell a converted van down the road, Smith said.
Advice: Smith stresses that van shoppers should involve a mobility dealer from the start, whether you intend to drive the vehicle and need an evaluation, or are purchasing a vehicle elsewhere to be adapted.
Again, keep an eye on the future: One van may fit a smaller manual chair or scooter, but be sure it will accommodate a bigger power wheelchair down the road, Smith said.