HEALTH INSURANCE AND GOVERNMENT PROGRAMS

In addition to psychological and physical stresses, financial worries may place a great strain on your family. Unfortunately, everyday care expenses and medical costs for DMD can be very large, especially in its later stages.

There are steps you can take from the beginning to keep your financial situation manageable. After learning of your child's diagnosis, read up on money management and start keeping a family budget, if you haven't been doing so already.

Also, look into the kind of health insurance your family has and educate yourself about different insurance options that you may wish to use in the future.

In addition to insurance, you should become familiar with financial assistance programs run by the government. Look under "state government" in the phone book and contact any agencies that operate programs for people with disabilities. Services vary greatly from area to area, but some programs are federally mandated.

These resources exist to help people, so don't hesitate to use them. The sooner you become registered, the sooner you can start getting help. The services you end up using may not be the same ones used by another family; each situation is unique.

In the last few years, there's been a great deal of talk about modifying government programs such as Medicare, Medicaid and Social Security Insurance). Be aware of recent state and federal legislative changes that may affect these programs.

Health Insurance

Health insurance is an arrangement whereby an individual or a family makes regular payments to a provider in exchange for the security of knowing that the provider will help pay for medical costs when they arise. Families and individuals can obtain health insurance either from commercial companies or from not-for-profit Blue Cross and Blue Shield plans.

Group insurance refers to an insurance plan offered to a defined group of individuals, such as people who work for a particular company. Individual insurance plans are sold on a per-customer basis to individuals and families. These policies may have higher premiums than group plans, since the provider doesn't have the same chance to "spread risk" among a pool of participants.

Health insurance for your family should provide the standard protection against medical illness and injury that any family would require. Ideally, it also should take into account the special and ongoing medical needs required by having a family member with a serious disability.

It shouldn't come as a surprise that insurance companies are not eager to become responsible for substantial, ongoing expenses such as those necessitated by DMD. If your coverage was in place before your son's muscular dystrophy was diagnosed, the company will be obliged to cover agreed-upon expenses. But often there will be a limit, or "cap," on particular kinds of medical expenses. Too often, that limit may be reached while the child is still young, and the family will receive no further coverage for certain continuing expenses.

For similar reasons, switching insurance companies or obtaining new insurance may be difficult for your family due to your son's DMD, which can be defined as a pre-existing condition. Companies may deny your application or require various limitations on the protection you can receive from your policy.

In order to evaluate what kind of insurance is best for your situation, you'll need to talk to your physician and/or MDA clinic director and discuss your current medical costs and what your costs are likely to be in the future.

If your insurance is provided through an employer, you should feel free to consult the company's benefits manager, who'll know what you can and can't get out of your insurance plan. Make sure your doctor and other health-care providers are aware of what your insurance will and won't provide.

Opting for a family policy will ensure that you and your spouse and children are covered while they remain dependents. But most policies will cease to provide coverage to a child after he is out of school.

However, there are steps you can take to retain a child with a serious disability on an already established family insurance plan after he has reached adulthood, perhaps indefinitely. You'll need proof from your doctor that your child has a disability and is incapable of supporting himself. In addition, you'll have to make this request to the insurance company before your child reaches the age when he normally would be removed from your family plan.

HMOs

In recent years, more and more health insurance is being provided through forms of "managed care," particularly health maintenance organizations (HMOs).

Participants in an HMO pay a regular premium. They are provided a list of participating doctors from whom they can choose a primary care physician. (Before you sign up, ask if you can get a primary care physician who specializes in neuromuscular diseases for your son.)

On the plus side, the HMO will provide approved medical services, possibly including home care, without cost to the participant, except that certain services may require a nominal copayment.

Theoretically, in an HMO, a child with a progressive disease will be covered like any other child. However, the primary care physician will serve as a "gatekeeper" and determine what services the family should have access to. Many of the medical costs associated with caring for a child with DMD may simply not be covered.

Some people contend that HMOs are good for people who are reasonably healthy and don't require extensive care, but they may not fit the needs of those with chronic or acute health problems.

TRICARE for Families of Uniformed Services Members

If you or your spouse belongs to the Army, Navy, Marine Corps, Air Force, Coast Guard, Public Health Service or National Oceanic and Atmospheric Administration, members of your family should be eligible to receive health coverage under a program called TRICARE (formerly known as CHAMPUS, Civilian Health and Medical Program of the Uniformed Services). TRICARE, a managed care system, is administered by the Department of Defense.

An active service member is not covered under this program but his or her spouse and dependents are. Military retirees and their families are eligible.

As with insurance offered commercially, coverage generally will cease for dependent children once they reach adulthood, but there is a provision to allow an adult child with a serious disability to continue TRICARE coverage beyond the usual cutoff age.

There are three levels of TRICARE coverage: TRICARE Prime, TRICARE Extra and TRICARE Standard. Each has a different cost structure and offers varying levels of coverage.

Generally, those who are eligible to receive benefits under Medicare or CHAMPVA, Civilian Health and Medical Program of the Department of Veterans Affairs, will not be eligible for TRICARE benefits. CHAMPVA is a program intended to help dependents of veterans who were killed or disabled in military service.

Long-Term Care Insurance/Risk Pools

Long-term care insurance is designed for those who are aged, chronically ill or disabled, and require care over a long period of time.

Risk pools offer a kind of insurance that is designed to guarantee coverage to all individuals, regardless of their health. Premiums and annual deductibles can be very high.

Social Security Disability Insurance Benefits (SSDI)

This program, administered by the Social Security Administration, helps adults who are under 65 and have a disabling condition that prevents them from working, and who have worked long enough previously to pay a qualifying amount into the Social Security system.

If a person qualifies, he should be eligible for SSDI benefits that come in the form of a monthly check. The benefits can continue indefinitely or until the person is able to work again. At age 65, disability benefits turn into retirement benefits.

Benefits won't be paid until six months after the onset of a disability. After two years of receiving disability benefits, the recipient will automatically be enrolled in Medicare.

Supplemental Security Income

If a person has never worked, he may be eligible for Supplemental Security Income (SSI). SSI is designed to help certain individuals who are unable to support themselves on their own, such as those who are aged, disabled or blind, and who have limited income and resources. Benefits are paid monthly.

A person who is applying for SSI should bring his Social Security number, birth certificate or proof of age, as well as information about his home and medical care, to his local Social Security office.

People who receive SSI benefits are often eligible for food stamps and Medicaid, too. It's possible to receive both SSDI benefits and SSI benefits at the same time.

If your child receives a ruling that he's ineligible for SSI benefits, don't be afraid to appeal. It may be possible to have the decision overruled.

Medicare

Medicare refers to health insurance administered by the federal government and available to qualifying individuals over 65, or those under 65 who have a disability. A person qualifies for Medicare if he's received Social Security benefits for 24 months.

If your son qualifies, he doesn't have to pay any premiums to be covered by Medicare Part A, which helps pay for care while he's in the hospital and for certain related health-care services after leaving the hospital, including hospice services. Certain deductibles and coinsurance amounts apply.

Generally, the coverage that Medicare provides for home care for conditions like DMD is limited to a short period of time and skilled nursing care only. Unfortunately, this leaves uncovered various kinds of ongoing, non-medical assistance that can be very useful in caring for persons with debilitating illnesses.

Medi-Gap or Medicare Supplement insurance refers to private insurance policies that are generally purchased by individuals over 65 who wish to supplement the coverage provide by Medicare. This kind of insurance helps pay for services not covered by Medicare as well as co-insurance and deductibles. There are 10 approved types of Medi-Gap insurance, known as A through J.

While Medicare Part A costs the recipient nothing, in order to be covered under Medicare Part B, the recipient must elect to pay a monthly premium. (The premium is tax deductible as a medical expense.) This B portion of Medicare helps pay doctor bills and other approved medical services.

Medicaid

Medicaid, also known as the Medical Assistance Program, is a government-run program to help cover medical costs of people with low incomes. Coverage and eligibility criteria vary from state to state. Individuals with higher incomes may be eligible if their medical expenses exceed a given percentage of their annual income. But generally Medicaid is designed to help those who are impoverished.

Medicaid coverage for long-term care is much more extensive than that provided by Medicare. It may provide coverage for home care and nursing home care for an unlimited time period, and includes non-medical as well as medical care.

The catch is that a person may not be eligible for Medicaid until nearly all of his personal assets have been depleted by the cost of caring for the disease.

However, a provision known as the Katie Beckett Waiver allows some children with developmental disabilities and chronic medical problems to be covered regardless of their parents' income.

Programs for Medicare Beneficiaries With Low Incomes and Minimal Assets

Each state is required to offer, through the Medicaid program, two programs that provide additional assistance to those who receive Medicare benefits. The Qualified Medicare Beneficiary Program helps individuals whose incomes are at or below the national poverty level. The Specified Low-Income Medicare Beneficiary Program helps individuals whose incomes are slightly higher than the national poverty level. Both programs can help pay some Medicare-related expenses that otherwise might have to come out of the beneficiary's pocket.

Programs for Children With Special Health-Care Needs

The federal government requires that each state establish and maintain a medical benefits program known as Children with Special Health Care Needs (CSHCN). This program was established to provide medical and related services to children with disabilities from birth to age 21 who meet established financial eligibility requirements.

In most states, CSHCN offices have proved to be an excellent source of information on clinical and rehabilitative services resources and financing for families affected by neuromuscular diseases.

CSHCN regulations require that states provide medical diagnoses and evaluations at no cost for eligible children. However, the range and cost of additional hospital care and related services will vary from state to state.

Pocket Guide to Federal Help for Individuals With Disabilities

The Office of Special Education and Rehabilitative Services publishes the Pocket Guide to Federal Help for Individuals With Disabilities. It contains important information about programs such as vocational rehabilitation, education rights, employment, financial assistance, medical assistance, civil rights, housing, tax benefits, transportation, and the Americans with Disabilities Act.

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