skip to Main Content

This article marks the beginning of a series of targeted discussions that Lamson & Cutner is providing for those who suffer from particular diseases.  Most of these illnesses are devastating in their effects, and sometimes require a special approach to planning.  Amyotrophic lateral sclerosis, more commonly referred to as ALS, is the first of these targeted discussions.

ALS is a progressive neurological illness that destroys brain motor neurons, resulting in loss of ability to control muscle movement. Muscle tissue and coordination gradually degenerates, sometimes leading to paralysis.  The life span prognosis is generally three to five years, although some patients live ten years or longer.  Currently, Riluzole is a primary medication that demonstrates some effectiveness is slowing the progression of ALS, however there is currently no cure.

Because of the devastatingly rapid, degenerative nature of the illness, many patients find they can no longer work shortly after being diagnosed. In addition to losing a major source of income, sufferers are faced with immediate and overwhelming medical and health care costs. Consequently, the realities of ALS make it imperative to initiate Medicaid planning immediately upon receiving an accurate medical diagnosis.

Insurance coverage is generally insufficient to handle all the costs associated with managing ALS as it progresses. One bit of good news is that Medicare offers an expedited approval process for ALS patients. While for most disabled persons under 65 years of age it takes two years to qualify for Medicare, those with ALS can be approved in just six months. While Medicare is a significant benefit, its coverage is only for acute medical needs (hospitals, doctors, short-term rehabilitation). Medicare does not cover long-term care.

Unfortunately, many ALS sufferers require a personal attendant within a short period of time to assist with most if not all of the activities of daily living, such as bathing, dressing and going to the bathroom. In fact, of five ALS clients Lamson & Cutner recently represented, four were wheelchair-bound in the first 6 months, and three lost their speech within seven months of diagnosis. With ALS, the key to successful Medicaid planning is speed. Patients need to act quickly, and get help from an experienced Elder Law attorney. Unless a patient is wealthy, Medicaid eligibility is essential to deal with these long-term care expenses.

Long-term care is private pay, unless you qualify for Medicaid, and Medicaid’s “spend down” rules apply for ALS patients just like everyone else. Without good planning, whatever financial reserves and other assets you possess will need to be almost completely depleted towards paying for your own care, before Medicaid will pay any benefits at all. Once your financial reserves are exhausted, you may find it difficult even to pay for your ordinary living expenses. This is why it is so important to devise a plan to protect your assets and income while, at the same time, you become eligible for Medicaid benefits.

Even with Medicaid benefits, you may find that the level of care provided is insufficient to cover all of your needs. For example, you may feel that you need 24-hour, around-the-clock, care, but Medicaid approves only 12-hours of home care. Medicaid may take the position that if additional care is required, you should enter a nursing facility instead. Consequently, ALS patients who want to stay home as long as possible may have to pay for extra home care services themselves. If you have protected your assets and income, you may well be able to afford to stay home rather than being forced into a nursing home.

Using proper Medicaid planning techniques, your Elder law attorney can employ various strategies to keep your money available for these supplementary services, while you simultaneously receive Medicaid benefits. That makes your money last longer, because Medicaid is paying all or a large part of your medical and long-term care costs. Also, if Medicaid approves fewer home care hours than you really need, your Elder Law attorney may also be able to assist in getting you more hours by taking your case to a Fair Hearing.

Two other fortunate advantages exist for ALS patients who live in New York. First, in comparison to other states, New York has a very generous home care program. Secondly, Elder Law methods can be implemented expeditiously, and with professional planning, the approval process can proceed smoothly and without delay.

If you know someone who suffers from ALS or family members that might appreciate knowing this information, please feel free to forward this article.

Back To Top