Everyone knows how important it is to obtain good health insurance. It's reassuring to know you'll be covered for most of your health care costs, whether for doctor visits, medications, physical therapy, hospital visits or other expenses in the management of a neuromuscular disease, or for any other ongoing health condition.

But how can you be sure your coverage will last forever?

Sometimes the health care provider designs the plan so that coverage won't last indefinitely, through the use of caps.

A cap is a limitation on service. It may be a ceiling on how much coverage goes to a particular kind of an expense during a year.

It may be a lifetime cap that pulls the plug on coverage after a large dollar amount has been reached over years of expenses.

A cap may apply to a particular kind of coverage - physical therapy, for instance - or it may apply to total health care coverage.

"That's a state by state situation, in terms of what kinds of limits the plans impose," says Mike Leone, an insurance specialist in Connecticut with expertise on health care issues for people with disabilities.

"Most companies are unlimited or have very big caps," he says. "However, there are caps on things like durable medical equipment and certain therapies, and that is something that people have to be aware of."

Getting Around the Cap

The first thing is to be educated about your own policy and its limitations and exclusions. Read your policy carefully. Try to cultivate a contact at the insurance company, possibly a case manager who can help interpret the policy for you.

Another resource is your state Department of Insurance. "Sometimes it's the last place people think of," Leone says. "They tend not to think of a state agency as being helpful. But they are, because they know the rules, they know the regulations and they are certainly the best places to start."

Many state Departments of Insurance have Web sites that can serve as starting points for inquiries. Try an Internet search using your state name and the words "Department of Insurance." Links to many of these state agencies are available at www.armonline.com/govlinks.html. You can also contact your Department of Insurance by looking in the "State" area of the government listings in your phone directory.

Government Protection

In addition to providing information, these agencies protect consumers by setting standards for insurance companies to follow within the particular state. There is no national equivalent of these state-level watchdog bureaus for the insurance industry.

However, there's a body of federal legislation in place administered through the Department of Labor that provides certain protections to those covered by health insurance. COBRA (Consolidated Omnibus Budget Reconciliation Act) helps people remain on health coverage when coverage might otherwise be discontinued due to such factors as job termination or death of an employed spouse.

And HIPAA (Health Insurance Portability and Accountability Act) limits the circumstances under which insurance plans can exclude someone from coverage based on a "pre-existing condition" such as a neuromuscular disease. (For more information, see "Keeping Your Child Covered by Health Insurance")

Special Maneuvers

Leone often advises clients on maneuvers to help them avoid getting cut off by insurance caps applied during a calendar year.

"There are things you might do," he says. "If you're a married couple, I'll suggest you stay on one plan until you get close to using up your maximum and then jump onto a spouse's plan for the rest of the year."

A person whose health insurance is discontinued for any reason is generally entitled to coverage under a spouse's plan. Whether a couple chooses to discontinue one plan or keep both going may depend on a number of factors, including ability to pay premiums for both policies.

"In Connecticut, we have what they call the Health Reinsurance Association," Leone says.

"It's an individual medical plan for state residents who have no other insurance. Sometimes I will tell people to use up the insurance they've got through work and then jump onto that for extra coverage and then maybe get back on the group plan if that's possible."

Critical Distinctions

Michael S. Melbinger, a Chicago-based attorney and partner with the Winston & Strawn law firm, is an expert on employee benefits and insurance issues. He's also a longtime MDA volunteer who's written about benefits for Quest. (See "You Can Take It With You")

Melbinger says that if your insurance is provided through an employer, it's important to be aware of whether the plan is an insured plan or a self-insured plan.

An insured plan is in effect when the employer hires an insurance company to determine policy and administer benefits.

A self-insured plan is one that's created and administered directly by the employer; benefits are paid out of the company's assets.

"If it's an insured plan, which means the employer's buying an insurance policy from some health insurer, then you're subject to state law," Melbinger says.

"The insurance company has to have its contracts approved by the Department of Insurance in that state, and whatever that state's laws say about caps will govern. Some states allow caps and some don't. "If it was a self-insured plan, the employer would be able to draft in almost any kind of cap it wanted," Melbinger says.

Thus, from the consumer's perspective, a self-insured plan might be a good thing or a bad thing. The lack of protection provided by the state might allow employers to skimp on benefits paid out.

Grounds for Negotiation

On the other hand, if an employer is generally responsive to employees' needs, the flexibility a self-insured plan provides can be an advantage, possibly giving employees negotiating room when it comes to such things as caps.

"The employer imposed the limit - say on physical therapy - for a reason, because they were worried about something being overused, like people going to the physical therapist and treating it like a health club," Melbinger says.

For a person who requires physical therapy for a limited amount of time, due to a legitimate but nonchronic condition such as a knee injury, such a policy might be fine.

It's different, Melbinger argues, if the plan participant has a critical ongoing need for physical therapy due to a health condition such as a degenerative illness, and can provide medical documentation for the need.

"The big difference between those two things should be treated separately, and I'd argue for a different cap or not to have the cap apply," Melbinger says. "Most employers have a benefits committee that could consider that issue.

"The next level is to actually file a claim for benefits," he says.

If the claim is turned down, Melbinger suggests finding a lawyer or other representative to handle the claim. He says that some companies, upon receiving a letter on official stationery, may "see the light" and authorize the needed exception to the policy.

Another way to gain more flexibility about your health insurance, Leone advises, is to become self-employed. This can give you the latitude to pick a plan that's better tailored to your needs than one provided to many people through an employer.

"If you are on your own and you know you've got a lot of medical treatment ahead of you, you are going to want the best plan, even if it costs you a little more, because, in the long run, it's worth it," Leone says.

HMO Limitations

Leone takes a dim view of the effect that health management organizations (HMOs) have had for people with ongoing health difficulties.

"HMOs are very good at fixing acute illnesses or injuries but they are not good at ongoing chronic care, especially involving physical therapy for any kind of degenerative illness," he says. "HMOs are more oriented toward watching the pocketbook than traditional insurance companies were.

"With HMOs, your primary care physician will refer you to a specialist for other treatment, but they have to have it pre-authorized, they have to weigh the cost of one treatment versus another, they have to submit a plan of treatment that has to be cost effective and has to be showing results.

"Physical therapy is a classic one. They will cover physical therapy as long as the person is showing improvement, but it's a difficult case to make to them that the physical therapy might not be showing improvement but is slowing degeneration. It's short-sighted because the lack of physical therapy may lead to hospitalization, which is a much more expensive ordeal."

He concedes that HMOs are showing an awareness of the importance of preventive medicine.

"Nowadays, HMOs do encourage people to get the mammograms, to go for the routine physicals, to get the PSA (prostate specific antigen) tests and those types of things," he says. (See "Managing Managed Care")

Long-Term Planning

Most health insurance plans are not designed to cover costs for nursing home or in-home care. Long-term insurance is a special kind of coverage that will help meet costs of daily care. Unfortunately, Leone says, it's difficult or impossible for individuals to obtain this kind of coverage once they have received a diagnosis of a neuromuscular disease.

The government-sponsored health insurance program, Medicaid, does pay costs for long-term care. To qualify, an individual basically has to be impoverished. Some people, faced with a need for long-term care, spend all of their assets on care and then let Medicaid take over.

Carrying long-term insurance coverage may be advantageous for those who wish to protect their financial assets in anticipation of an illness requiring long-term care - or simply for those who wish to maintain some control over how they'll be cared for.

"People don't get long-term insurance at as young of an age as I think they should," Leone says. "It's one of those really important kinds of insurance that people just don't want to think about."

Another concept worth thinking about is the viatical settlement, also referred to as a "living benefit." This applies to people with serious illnesses who've been carrying life insurance, benefits for which are paid on a person's death.

In a viatical settlement, the person named in the life insurance policy chooses to sell the policy and receive cash for it, enjoying the proceeds while he's still alive, instead of letting them go to a beneficiary. He can use the proceeds for medical treatment or anything he wishes.

"It's appropriate if the current need for cash is greater than the need to leave money for a beneficiary," Leone says. "A single guy with no kids, for instance."

Some consumer information about long-term insurance and other health insurance topics is available from the Health Insurance Association of America. You can either call (202) 824-1849 or visit the Web page at www.hiaa.org.