FOR 10 YEARS, Frank Rubensohn has battled the effects of multiple sclerosis. And for 10 years, he has fought for just about every piece of home medical equipment and every service he has needed.

"You have to fight all the time," says Rubensohn, 55, of Milwaukee, Wis., who uses, among other devices, a power wheelchair for outings, a manual wheelchair around the house, custom cushions, a lift chair, a lift to get him in and out of his chair and bed, and a lift to get him into both the shower and his minivan. "My gripe is that not enough provisions are made by insurers to provide equipment that will allow the patient to stay at home."

A Long-term Approach Rubensohn, a coins and precious metals dealer who works from home as his ability allows, recognizes that the products he uses are expensive. But their cost is far less than if he were in a long-term care facility, he says.

That belief, and the desire to stay at home, fuels his continuing battle to get the products that suit his ever-changing condition. Rubensohn has progressive, or Type 2, MS. "It went in stages," he says. "I used to be able to seat myself in the wheelchair unaided. Then I needed a walker; then I needed someone to hold my arms. Now I have a hoist."

Those changing needs-and conditions such as edema and pressure sores-propel him to continually search for products that could help him. "There are amazing [devices] out there that help people," he says. But the people who need them-and the physicians who could prescribe them-often don't know what's available, Rubensohn says.

So, he digs for information himself, talking with providers, therapists, even manufacturers. Once he's targeted the best product, he seeks a provider who carries it.

Rubensohn now uses several providers. But he's never visited any of them. It's better, he says, that they visit him because they need to see him in the environment in which he will use the equipment.

Sensitivity Required On the whole, says Rubensohn, HME providers have been helpful with both products and product suggestions, and their employees are usually well-trained. But sometimes, they don't recognize a person's limitations. On a provider's advice, he once got a wheelchair that had a lot of good features. "But I couldn't get into it," he says, adding, "Often, you have to do the thinking for the provider."

Identifying the proper product is sometimes the easy part. Getting it paid for is something else again. Rubensohn has frequently dipped far into his own pocket to pay for what he needs-including for the caregiver who comes four times a week while his wife is at work. "We could have gone around the world twice with what we've paid-and I would rather have done that," he says.

Often, he's had no choice-if he wants the product. "Medicare is not the greatest," he comments. "There are some things it recognizes, other things it doesn't. I've found that a claim has to be worded exactly right, or it's thrown out."

Both Medicare and insurance companies are short-sighted, Rubensohn believes. "They might approve the hoist for use [to get] in the shower, but the fact that the same hoist is used to get into a vehicle-they say that is not useful. They don't take into consideration that a person might need to see a doctor once in a while.

"This is the red tape, where they don't use common sense," he says. "If a hoist is available that can double for the shower and the vehicle, it costs a little more, but we've got two problems solved."