Keep Covered! Sticking UP for Yourself Regarding Health Insurance.

Part Two

If you have MS, it pays to know the basics about health insurance and about government entitlement programs so you can successfully protect your own interests. Ten years ago old acquaintances of mine, Sara Perkins and her husband Lanny, coauthored the book, MS: Your Legal Rights. They are both attorneys. Sara and I were diagnosed with MS in 1984. When the book was first published in 1988, she had retired and was drawing Social Security disability insurance (SSDI) benefits. This summer, they will issue a revised edition.

Despite changes in the law since 1988, the Perkinses agree that living successfully with a medical problem like MS is still a hard job. "You can't just say, `I'm sick'," said Mr. Perkins. "You have to be alert and look out for yourself. You have legal rights, but you have to make sure they get enforced."

It helps to have good advocates on your side--like a doctor who is savvy about health insurance coverage. But physicians and their office staff don't always understand how insurance or entitlement programs work. That's scary, because what doctors do or don't write when they complete an insurance form or claim for disability is often the deciding factor in whether you receive benefits. Being a good self-advocate means learning for yourself and being aware that you may need to educate your health-care team.

Get a grip!

There are two important moves to make. First, understand your present health insurance policy. If reading it numbs your brain, get help from your plan administrators. There is someone on the staff who can explain it to you, so you know what is and isn't covered, and, importantly, what your policy requires you to do. Second, make a habit of documenting. Keep files of everything pertaining to your health insurance claims, your health problems, and the care you receive.

"Use a tape recorder if you can't or don't want to write or type a daily journal. Record dates and reasons for every doctor visit as well as your MS symptoms," Ms. Perkins advised. "Trying to recall things later is too hard. After living with MS for a time, most people tend to forget the details and ongoing symptoms of their disease."

The doctor's professional records are the most credible to insurance or disability benefits administrators, Ms. Perkins said. However, personal records can be used as evidence in a legal proceeding. They can also be helpful to you and your doctors in making treatment decisions.

Marc D. Stolman, author of A Guide to Legal Rights for People with Disabilities, agrees. "Memories--yours and your doctors'--aren't good enough," he said. He's also an attorney who has MS. "Document and ask your doctors to document," he repeated. And be sure your doctor understands what you need.

"If you are applying for Social Security disability insurance, the doctor must be able to show that your MS condition limits your ability to perform basic work activities," he said. It's OK to ask your physician if she or he has a copy of the Social Security Administration's guide for physicians, often called "The Blue Book" (see page 29).

More urgent than ever

Insurance reimbursements and disability benefits have always been important to people with MS. With recent understanding about the benefits of using one of the new disease-modifying drugs such as Avonex, Betaseron, or Copaxone, the issue is even more urgent. These drugs are expensive, and HMOs, insurance companies, and government agencies have not always made good decisions about granting coverage for them. To support insurance claims and to help persuade government programs to include these medications in their coverage, the National MS Society issued a Disease Management Consensus Statement. Ask your chapter to send a copy to your insurance provider if the need arises--or download it from the Society's web site (www.nmss.org).

Insurance basics

In his book, Health Insurance: How to Get It, Keep It, or Improve What You've Got, Robert Enteen, PhD, starts with basics:

Private insurance providers:

* Commercial, for-profit companies whose main insurance product is group coverage

* Not-for-profit service benefit plans, the largest and best known of which is Blue Cross and Blue Shield 

* Large corporations or voluntary and professional organizations with their own self-insured plans

Government insurance

* Medicare, available from the federal government mainly to people 65 or older--or to those who have a disability and have been receiving Social Security disability insurance benefits for at least 2 years. (A few other categories of people are also eligible.)

* Medicaid, available through state/federal partnership to people with limited income and assets who meet eligibility requirements.

* Insurance for veterans and their dependents.

* Insurance for federal and state employees.

Managed care

* Managed care is now offered by all types of health insurance providers. The term includes health maintenance organizations (HMOs) that combine insurance with direct delivery of care and the preferred provider organizations (PPOs) that offer discounted medical bills if certain providers are used.

Blurred distinctions

In many states, Medicaid coverage is now provided through private managed care organizations that have contracts with the state. Thus people insured by Medicaid--as well as people in private employer-based group plans or those who are shopping for insurance on their own--are being persuaded, urged, or even pushed to change from traditional fee-for-service insurance plans to an HMO.

Do these distinctions matter? Yes. The insurance industry is regulated by laws--by state laws or by federal laws--and blurred distinctions may make it hard for consumers to know what they have. If you're not sure, ask your insurance administrators. If your insurance is employer-sponsored, it is probably federally controlled.

Federal consumer protections are generally weak. For example, you have no right to sue for damages. If your insurance is state regulated, the consumer protections may be stronger, depending on what state you live in. Every state has a department of insurance mandated to educate and advocate on behalf of consumers. Some offer excellent protections, and some are less than adequate.

Since Medicaid is a federal program administered by state governments, and most states have some say about how the program functions within its borders, the protections and appeal procedures available will vary.

Consumers should know what they have

Every good self-advocate has an obligation to know the rights, requirements, and appeal opportunities in their health insurance plan. It's smart to know what changes are being considered, and what options might be open as well. Your state insurance department should be able to provide information about all the insurance plans available within the state, and it should be able to steer you to information about any pending state legislation on health insurance issues.

Coverage denied!

What happens when your insurance company refuses a claim or your HMO refuses a treatment? If you decide to fight, first ask them for a written statement--on letterhead paper--with an explanation of the decision and the reason behind it. Then check your contract. Ask for clarification if necessary. Do you have a good reason to fight?

"Your doctor should be able to provide documentation of what is essential for your care," said Nancy Law, head of the Society's client programs. She recommends asking the physician for assistance at this point. You will be in better shape to fight on if you've kept files and documents as the Perkinses and Marc Stolman advise.

Follow the rules for appeal provided by your insurer, and during the dispute, continue to ask for information in writing from your health insurance provider. Keep a record of every phone call too, with the names of people who spoke to you, the date, and notes about what was said by whom.

If an appeal fails, and if your plan is state regulated, there may be some other levels of appeal available. This needs to be explored with your state's insurance office. You may also want to ask about a "private right of action", which means the right to hire an attorney. Federal law currently mandates no internal or external appeal process for consumer protests, and there may be little you can do.

How to hire a lawyer for an insurance problem

If a careful investigation of the facts convinces you that you want to hire a lawyer, your nearest National MS Society chapter may be able to offer referrals. Many state, local, and county bar associations have referral programs to low-cost legal help or sponsor legal aid societies. Law schools might offer no- or low-cost legal aid as well. Every state also has a trial lawyers association which can make referrals to attorneys who specialize in health insurance.

Social Security programs

As explained above, most people with disabilities become eligible for Medicare or Medicaid health insurance through being eligible for one of two Social Security income-maintenance programs: Social Security disability insurance (SSDI) or Supplemental Security Income (SSI).

SSDI is based on work history and disability status and is available to people who can no longer work at a "substantial gainful level" but who were employed for most of their adult lives. The work history requirement is a bit complicated, but the rules are well explained in Social Security Administration pamphlets. Medicare coverage begins 24 months after the official eligibility for income benefits begins.

SSI is based on financial need and disability status. The benefit payments are substantially lower than those of SSDI. Those eligible are low-income people, with limited assets, who are 65 or older, or have loss of vision, or have other disabilities. Medicaid coverage begins according to the state's regulation.

Applying for Social Security programs

Both SSDI and SSI application forms ask for a complete medical history. If adequate records are not provided, a person may be sent to a consulting physician for an examination, said Mel Tanzman, director of health policy for the Eastern Paralyzed Veterans Association. He warned that this exam might not be thorough enough to provide a complete picture of the health of a person with MS.

A smart self-advocate will file a written statement from her or his physician detailing the MS-related disability. A good self-advocate will first explain to the physician that this statement should be guided by the 205-page "Blue Book", Disability Evaluation Under Social Security (SSA publication #64-039). The most recent edition was published in January, 1998. It contains the medical criteria Social Security uses to determine disability. It can be obtained by professionals free of charge from the SSA's Office of Communication--by faxing 410-965-0696 or by writing to SSA at P.O. Box 17743, Baltimore, MD 21235. Social Security will also want an accurate work history--here come those documents again. It may also want to determine whether your education and knowledge levels are transferable to another type of employment.

A shortcut through the jungle 

Getting these Social Security benefits--and the insurance coverage they bring--isn't easy. Only 36% of people who apply for SSA disability benefits are accepted on their first try. Statistics indicate that people who use a Social Security representative have a higher acceptance rate than those who do not, both on initial application and on appeal. There are 4 levels of official appeal.

Representatives are paid on a contingency basis, and are only paid if you win your benefits. The fee is set at a certain maximum percentage of the retroactive benefits--the checks you would have received if you had not been denied. But the out-of-pocket costs will be your responsibility, whether you win or not. As a good consumer, have a frank talk about the costs before signing on the dotted line.

Allsup, Inc. is a commercial firm that provides Social Security representatives (800-854-1418; www.allsupinc.com). Some people advise getting representation before the application is submitted. If you have a good coach telling you what to say and how to say it, this theory goes, you maximize your chance of being approved on the first go round.

The National Organization of Social Security Claimants' Representatives (800-431-2804; www.nosscr.org) is a professional society whose members are attorneys specializing in Social Security law.

They also work on a contingency basis and generally take only clients who are making a second appeal--at the Administrative Law Judge level--the ALJ hearing. More than half of all SSDI and SSI recipients ultimately receive benefits because they appealed to the ALJ.

The bottom line

Wading through red tape is confusing, reading insurance contracts is not a day at the beach, and keeping detailed symptom diaries, work histories, and medical records can seem overwhelming. However, your time and trouble should pay off. You will be aware of the resources you can consult, and the planning you should do to best protect your money and your health. You will be sticking up for yourself.

Sticking up for yourself may mean working with others

Important legislative action to improve health insurance is being done on the state level. According to the Society's Advocacy Program, some 4,800 patient protection bills have been filed for possible action in 1999. For example:

* 41 states will consider bills to improve access to specialists

* 19 states plan laws to regulate insurance company rules on drug coverage

* 14 states are looking at "point of service options"--which would allow an HMO member to see a physician outside the network, though usually with additional premiums or co-payments.

For information on what's happening in your state and what you can do about it, call 1-800-FIGHT MS, option #1. Ask if your chapter has a Government Relations Committee. And contact your state insurance department for additional information on pending legislative action on health insurance issues in your state.

Advocacy services

Center for Medicare Advocacy

A private nonprofit agency that provides assistance to people with disabilities (and their advocates) in areas of Medicare, educational materials, home care, and referrals. 860-456-7790 www.medicareadvocacy.org

National Committee for Quality Assurance 

NCQA evaluates how well managed care plans are doing their jobs and accredits them based on their evaluation. They provide this information for consumers to help them make the best choices when choosing a managed care plan. 800-839-6487 www.ncqa.org

Vicki Hinson-Smith lives and works in Massachusetts and New York where she specializes in biomedical communications. She has MS.