On December 15, 2000, Congress voted to waive the 24-month waiting period for Medicare coverage of people diagnosed with ALS. The law will be effective July 1, 2001.

Implementing the Waiver
The Health Care Financing Administration (HCFA) is currently notifying each Social Security Administration Office of this new law. HCFA has also identified 1,360 persons with ALS that on July 1, 2001 will be entitled to Medicare benefits. A letter in mid-June will notify these individuals that they will be eligible beginning this date. This letter will serve as their official verification to their provider until their Medicare Card is received in mid August.

Since 260 recipients have already been identified by HCFA as receiving benefits in late summer/early fall, these individuals will receive a package stating a later start date. However these individuals will receive a second letter notifying them to disregard this package and follow the instructions of their June letter.

How Medicare Works
Medicare is the federal program that provides health insurance benefits for those Americans 65 years and older as well as the disabled. It is a program that applies in all 50 states.

As soon as an ALS patient becomes disabled from the disease - is unable to continue working and meets the Social Security eligibility criteria for "disability" - he/she should apply for Social Security Disability. Persons who are disabled do not have to be 65 years old to qualify for Medicare.

Until the ALS legislation was passed, eligible disabled Americans with ALS had to wait a total of 29 months for Medicare benefits from the time their Social Security Disability (SSD) application was approved. When the ALS legislation becomes effective on July 1, 2001, ALS patients will be spared 24 of the 29-month waiting period for Medicare benefits.

Waiting Period
When eligibility for SSD has been approved, it includes Medicare benefits. The standard waiting period for SSD is five months. This period has not been waived. Monthly disability payments for SSD begin after the mandatory five-month waiting period.

The amount of the SSD (not Medicare) monthly payment to an individual with ALS for their disability is based on the amount of their covered Social Security earnings for which FICA taxes were paid. When the ALS legislation becomes effective, Medicare benefits will begin at the same time as SSD payments, eliminating the additional 24-month waiting period.

Medicare Benefits: What's Covered
In general, Medicare covers in-patient hospitalizations including surgery, treatments and inpatient medications. Health care organizations are reimbursed on a prospective method based on the patient's diagnosis. Therefore, this capitated payment system and average length of stay for the same diagnosis and conditions may influence inpatient care treatment plans.

Medicare covers selected outpatient care such as diagnostic tests, physician visits and certain therapies. Medicare does not cover out-patient medications and custodial home care. Some limited skilled in-home care is covered.

Medicare coverage change effective January 1, 2001 allows Medicare payment for dedicated augmentative/alternative communication devices (AAC). Excluded from this benefit coverage are computerized devices that are not systems dedicated to AAC needs. Most people with ALS require a variety of adaptive devices around the home to assist with activities of daily living. Medicare does not cover the expenses for most assistive/adaptive equipment.

A number of people with ALS will benefit from the ALS legislation by receiving Medicare insurance coverage for health care. Under the current system, most people with ALS lose their health insurance once they are no longer able to work. The continuation of benefits under COBRA is an option for some people, but it is time-limited and can be expensive. For those patients who have to go without health care insurance at a time in their lives when they need care and services the most, the ALS legislation can be invaluable in providing coverage for health care and in sparing families from financial disaster.

Medicare Payments to Health Care Providers
In order to receive payments from Medicare, a health care provider or institution must have a Medicare contract for provider services and must comply with all Medicare regulations and billing practices. Under the ALS Medicare waiver, people with ALS who are not seeking care now because they have no insurance will be able to seek and receive care and their health care provider and clinic or hospital will be able to bill Medicare for payment. Many people who are being seen in ALS clinics and are either self-pay or "charity" will now be covered under Medicare.

ALS patients will benefit from the ALS legislation. Medicare payments to most ALS health care providers and medical center ALS clinics may not cover the costs of providing the comprehensive, intensive services delivered. Increased Medicare coverage for people with ALS will improve the fragile economic situation most ALS clinics face on an ongoing basis. It is anticipated that ALS clinics and ALSA Centers may receive a modest increase in Medicare payments for services to newly eligible ALS patients.

The ALS Association and Medicare
As ALSA does not deliver direct clinical care reimbursable by Medicare - nor does ALSA have a provider contract with Medicare - we will not receive any Medicare payments.

Although ALSA chapters that financially support ALSA Centers and ALS clinics should review their agreements, it is unlikely that any increase in Medicare payments to physicians and medical centers constitutes "double payment" for financial support currently provided by the ALSA chapter. In most cases, chapter support goes for providing staff, equipment and special projects such as attending conferences. In general, none of these would constitute "double payments."

The current level of ALSA chapter support for their local ALSA Center should not be affected by the new law.

Prevalence of Medicare Coverage
Data from the ALS CARE database indicate that approximately 37% of people with ALS enrolled in the database have Medicare insurance coverage. An estimated 16% of people with ALS may currently have no health insurance coverage. It can be estimated that a number of these people may be eligible for Medicare through SSD when the ALS legislation goes into effect. The database reports that 47% of respondents report that they have health maintenance organization (HMO) coverage or "commercial" insurance.

ALS patients with Medicare coverage who also have other health care insurance - Medi-gap or spousal coverage - should consult their written benefit plans and representatives of each plan to understand the coordination of benefit coverage. In almost all plans, patients are responsible for co-payments and/or deductibles. Lifetime maximum payments of one million dollars are not an uncommon provision in an insurance policy. People with ALS and their families must become knowledgeable about their particular plans and covered benefits.

Differences State to State
Medicare is a federal program, patients and health care providers may experience some local differences in application of benefit coverage. The county is divided into regional authorities for interpretation and rulings. Visit the Social Security Online Directory to Disability Determination Services in Kansas, Missouri and Nebraska.

An Advocate for You
It is vital that each person with ALS has an advocacy system in place for his or her health care needs. Whether this is the patient, family member/friend, clinic staff or ALSA staff/volunteer, providing individualized case management for a person with ALS can result in access to services, care and equipment that might otherwise be denied.

For more information, contact Mary Lyon at the National Office (818)880-9007 or the ACCESS Program.