Time for
a New
Wheelchair?

State programs, MDA and fund-raisers can help you piece together the funding puzzle

Taping your high school principal to a wall with duct tape may seem like an unusual means of obtaining a new power wheelchair, but it worked for Kimberly Hill, 17, of Edmond, Okla.

Kimberly, who has spinal muscular atrophy, didn't do the actual taping. It was one element of a fund-raiser at Edmond North High School that garnered $57,000 for students with disabilities in just one week. Other activities at the February 2000 event at the 2,000-student school — for donations of a dollar or two — included special assemblies and mock television game shows.

Kimberly was one of three students with special needs who benefited from her schoolmates' generosity, and one of many people served by MDA who've used alternative and creative funding sources to supplement gaps in coverage by public or private insurance for obtaining a wheelchair.

Through their private insurance, Kimberly's parents, Mike and Connie Hill, had recently purchased Kimberly's new manual chair, which she uses at school, along with the services of an all-day personal assistaOnt. However, their insurance providers had refused to cover a power chair that would bring her added independence at home and on excursions.

"We knew they wouldn't do a power chair because we'd been through it before three or four times," explains Mike Hill about the insurance coverage.

So when a group of students with special needs was asked to provide the school's fund-raising committee with a wish list, a power chair was at the top of Kimberly's. Thanks to the school event, she has a new Invacare Power Tiger, equipped with a laser beam control that enables the 65-pound senior to drive the chair with the three fingers she can move.

"It's very important that a chair is upgraded in a timely fashion to where the child isn't put in a lot of extra pain," says Mike Hill. "If it doesn't fit and you have to sit in it wrong, it makes it really impossible to sit through something long enough to get all the information she needs. [When that happens] she misses a lot — you always miss the punch line of a joke, basically."

The school event covered most of the $12,000 cost of the chair, with about $2,000 contributed by MDA.

The Search Begins

Kimberly's situation is far from unique, according to Nancy Shephard, a physical therapist who works with the MDA clinic at Children's Hospital in Oklahoma City. As many as 75 percent of the clinic's 200 to 300 patients eventually need mobility equipment of some kind, whether it's a scooter, a manual chair for part-time use or a full-time power chair.

"Probably about 50 percent of our clients have some means of paying for that equipment. Nearly all of our clients that get wheeled mobility have some assistance from MDA, and probably at least a fourth of them don't have any assistance other than MDA," says Shephard.

Still, she cautions, "You have to do all the steps right and jump through all the hoops and do it in the right order, or it's very difficult to get equipment or get it paid for."

MDA Can Help

Experts say the best time to plan to buy a new wheelchair is before you actually need it.

After determining what your private insurance or Medicare policy will cover, the next step is to contact the health care services coordinator at your local MDA office. HCSCs are often aware of resources in your community and may be able to direct you to reliable dealers, independent living centers and other community organizations that have funding or further information to offer.

MDA HCSCs also maintain equipment loan closets and administer MDA's equipment purchase and repair allowance. Anyone registered with MDA whose prescription for a wheelchair is written through an MDA clinic can be referred to area vendors who have arrangements with MDA.

When MDA-prescribed wheelchairs (or leg braces) are purchased through such a dealer, MDA allows $2,000 per child every three years and the same amount per adult every five years toward the purchase. MDA also allows up to $500 per person per year for repair of wheelchairs and leg braces.

In addition, MDA maintains equipment loan closets that may offer suitable equipment on an emergency or temporary basis.

Rally Your Health Care Team

To obtain the chair you need, it's essential to have a good working relationship with your doctor and others at the MDA clinic, such as physical and occupational therapists. Think through the daily tasks for which you'll use the chair, and communicate these needs to the team.

Shephard says, "It's not like buying a car, where you go to the dealership and pick out what's right there and pay cash for it and drive away. Most of the equipment is more customized than that and may not even be made for the client until they have the equipment ordered."

In fact, people who use power chairs say the process more closely resembles being fitted for a quality pair of shoes or a custom suit. The proper fit requires both accurate measurement and knowledgeable service.

Kimberly Hill, 17, of Edmond, Okla., with her new wheelchair.

Dealing With Dealers

For that reason, another vital component is a reliable equipment dealer, who will take time to learn about your lifestyle and mobility needs.

"Probably we spend the first half hour just talking about their needs, the areas they're having problems with," says Ted Malkowski, owner of Westhill Rehab in Appleton, Wis.

"We're going to address everything — bathing needs, getting in and out of the house — wherever they have problems.

"Next we do the measuring, and go to the showroom and pull out demo chairs and let them try them out. Then we'll see about different funding sources," he continues.

Malkowski is a longtime MDA volunteer who estimates that in 15 years his dealership has served about 1,000 people with neuromuscular disease. Between the company's skill at obtaining funding and MDA's standard allotment, Westhill Rehab never bills people served by MDA, he says.

"We have a computer program that allows us to pick out the appropriate [medical] justification, saying why they need each feature. We send that off with the doctor's signature," says Malkowski. "We paint the picture of why the client needs it as opposed to sending in a little 4-by-5-inch prescription. We've had very good results. For more than 90 percent of the people we deal with that have neuromuscular diseases, MDA pays nothing or very little."

After insurance, Malkowski then turns to other sources, such as the state Vocational Rehabilitation program or MDA to help fund his chairs, which are priced in the $10,000 to $12,000 range. He especially encourages those who are without insurance to check with their state's Department of Vocational Rehabilitation.

Staking Your Claim

When you file a claim for a new chair with your insurance company or the Vocational Rehabilitation Department, you should alsosubmit a detailed written explanation of your need for a particular chair. Include a brief summary of your diagnosis and symptoms, lifestyle, work and educational needs. Then provide a detailed list, feature by feature, with the medical reason for needing each feature.

"You have to medically justify every one of those needs," says Paula Redman of Redman Power Chairs in Tucson, Ariz.

"You need to say 'a person needs to stand' and the reason why. If you justify every one of those needs: the stand, the recline, the body positioning, it [insurance] will pay."

Redman — whose company sells one model, a chair that allows users to stand and costs $21,700 without accessories — recommends that consumers ask equipment vendors for flexible payment options.

She also suggests inquiring whether any demo wheelchairs are available for purchase at a discount. Although power wheelchairs are customized items, it's possible that a demo chair (which may come with a warranty) may fit well enough to be useful — especially at prices discounted from 25 to 50 percent. Check with your health care team to be sure the demo is appropriate for you.

Disability consultant Jane Burdette of Parkersburg, W. Va., is planning her next wheelchair purchase.

Start Planning Now

It's also vital to have a plan for obtaining equipment before you actually need it, says disability consultant Jane Burdette of Parkersburg, W.Va., who spends up to 16 hours a day in her basic model 1990 Invacare power chair.

"People want to wait until the last minute or they're in a crisis period before they start looking for resources, but they need to know what's out there before they get to that point," she advises.

Burdette, 45, who has SMA, is a longtime volunteer MDA leader. She obtained her current chair through a combination of funding sources, including private insurance, Vocational Rehabilitation and MDA's allowance.

A recent breakdown served as a warning that her chair — which has already doubled its life expectancy — won't last forever.

"I had to cancel my meetings for that day and make a quick (200-mile) trip to Charleston to rent a loaner chair," she recalls. Although she keeps an old chair for backup, the extra challenge is far from welcome.

"At this point with the chair, I'm concerned about waking up one morning and it no longer works [permanently]. It would tremendously slow me down, let alone the personal and emotional aggravation and distress it would cause," says Burdette.

To replace her chair, she plans to call her Vocational Rehabilitation counselor, then go to the MDA clinic and the equipment dealer for a prescription and fitting. Then she'll make a final selection from among models available through Vocational Rehabilitation.

"It's a major investment and you need to have somebody that's been there and knows what options they can offer you," says Burdette. 

Wheelchair Financing Tips

• Know what resources exist, and have a plan in place for funding before you actually need the chair.
• "Try before you buy" is as important with wheelchairs as with other big-ticket items, so find a dealer who will let you use the chair for a week or so in your own environment.
• Choose a vendor with an excellent service department, and get to know the people who'll be working on your chair. No matter how good the chair, it will eventually need servicing.
• Ask the equipment dealership if it offers customers a drop-off and pick-up service. Does it provide loaner chairs while yours is being worked on?
• MDA support groups can be an excellent source of information on local funding sources and options.
• Ask the equipment dealer about payment arrangements, dealer or manufacturer discounts, or discounts on demo chairs.
• If your funding comes in part through public or private insurance, obtain a copy of the policy to learn what it covers and how frequently it will replace equipment.