This issue focuses on playing defense from a medical, health and wellness standpoint. But it’s equally important to prepare yourself financially for the future, and when you’re living with MS, that can be more complicated than it is for the average person.
Spending a little time now to understand your financial safety nets can help you avoid major challenges in the future.
It is important to note that many people with MS may never become disabled. Treatments are rapidly improving; new and highly effective therapies are now available. Decades ago, multiple sclerosis could be expected to cause the eventual disability of almost all of whom were diagnosed. Now, thankfully, many people with MS may maintain normal or near normal function for their entire lives.
Even so, the sobering fact is that for all 20-year-olds—whether or not they have been diagnosed with a progressive dis-ease—more than one in four will lose the ability to work prior to retirement age. Thus, it is a good idea for everyone to know how to protect themselves should they lose the ability to work and to take whatever steps make sense to increase that protection.
There are three primary sources of protection: family and friends, private disability benefits and Social Security Disability benefits.
FAMILY AND FRIENDS
Insurance companies, the United States government (through the Social Security Administration), and state governments (through Socials Security replacement programs) often provide the critical safety net for workers who become disabled. Many times, insurance programs for workers will protect you as intended. The information below is designed to make that less likely. Even with careful planning, however, these insurance-based safety nets can also fail, meaning that they may take too long to provide benefits or may fail you entirely. No conversation about safety nets should proceed without mentioning the importance of family and friends. Some people have substantial financial resources at their disposal and can manage without income for a while. But unless you are rich, you should count on needing your community—your family, your friends, and even organizations such as faith communities and non-profit organizations—at some point. Of course, your community is your most valuable asset for many other reasons as well.
PRIVATE DISABILITY INSURANCE BENEFITS
Obtain private disability benefits through your employer if you can. People who have been diagnosed with a potentially disabling disease like MS are not generally able to buy private disability insurance. However, many employers offer disability insurance as part of a broad compensation package. For people with MS, this kind of protection is so valuable that it should be weighted heavily when making employment decisions. This may be your only opportunity to have access to private disability benefits. When compared with disability programs administered by the government (Social Security), private benefits may provide a larger income stream, a shorter exclusion period, and may be easier to access. Such private policies frequently replace 50 or 60 percent of a worker’s salary.
Purchase additional coverage where possible. Sometimes an employer will provide an opportunity to increase coverage for employees who are willing to pay for it. If you can afford the additional coverage, purchasing it is an excellent idea.
If your condition is genetically determined to a significant extent, consider recommending blood relatives obtain private disability insurance. Many chronic diseases are caused by your genes. If you have such a disease that is largely determined by your genes, considering suggesting that your close blood relatives who remain undiagnosed obtain disability insurance. Depending on the patter of inheritance for your disease, your blood relatives may never get the disease. Even so, if they are at an increased risk of being diagnosed with a progressive disease, getting such insurance now may be an excellent bet. To understand the extent to which your relatives are likely to develop your disease, speak with your doctor.
Learn about the exclusion for pre-existing conditions. Most policies provide an exclusion for pre-existing conditions. However, pre-existing conditions will generally not prevent claims for disability benefits after the first year of work. But be careful, because time off from work may not be included in this calculation. Thus, if you have been employed for 12 months, but were out of work (e.g., through the Family Medical Leave Act) for one of those months, you may find that you have not been working long enough to qualify for disability benefits. Check with your specific disability insurance policy for additional details.
Understand the difference between “Own Occupation” and “Any Occupation” policies.
Many private disability policies—the best ones—will provide benefits if you become unable to perform the essential functions of your current work. For example, a neurosurgeon may be rendered entirely unfit for his job because of a slight tremor. Although such a neurosurgeon could probably perform other work, it doesn’t matter if he or she has an “own occupation” policy. Some policies are
referred to as “any occupation” policies and will only provide a benefit if claimants (policyholders) can prove that they are unable to do other work as well. Most policies are hybrid policies. Hybrid policies typically provide coverage for those who cannot perform their own occupation for a period of time (e.g., twenty-four months) and then convert to an “any occupation” policy. Often this is further defined as an inability to earn 60% of your previous earnings. Understanding these issues will help you chose the best disability coverage and will help you plan if you lose the ability to perform your current work.
Applying for Social Security while receiving private long-term disability benefits. Most long-term private disability policies require—as a condition of continuing benefits—that you apply for Social Security Disability Insurance (SSDI) benefits. In general, the standard for proving disability for SSDI is higher than it is for private long-term disability policies, so it’s possible that you may be found disabled for private disability benefits but not for purposes of Social Security. However, if you do qualify for both, the monthly benefit you receive from Social Security will generally reduce the amount that you receive from the long-term disability insurer. For most people who receive private disability benefits, an award of Social Security will not increase their monthly income.
Even so, it is important to get Social Security benefits if you qualify for at least two reasons. First, SSDI beneficiaries are entitled to Medicare 30 months after their disability onset. For most people, this is a critical benefit. Second, a finding of disability will result in a “disability freeze.” This protects your retirement benefits, which are calculated based on your average earnings. Without such a freeze, disabled people would be at risk for receiving diminished income at retirement age when private disability benefits generally cease.
Many long-term disability policies encourage beneficiaries to apply for SSDI benefits using a particular company and indicate this is a free service. Be wary of this. Most of the time, these referrals are to non-attorney advocates. You are generally better off hiring an experienced attorney. Because of the way Social Security attorneys are paid, hiring an experienced Social Security lawyer is also free to you in most situations. You have a right to choose your own counsel, despite the language used by private disability insurance companies.
Anticipate that your medical record will need to support your claim for disability. The issues here are similar to those for Social Security. See below.
SOCIAL SECURITY DISABILITY INSURANCE (SSDI)
The most important disability program, by far, is Social Security Disability Insurance. This is because most people who become disabled do not have private disability policies.
Understand whether you are eligible for SSDI.
You are eligible for Social Security Disability benefits if you have worked long enough, paid Social Security taxes, and importantly, have worked recently enough. Most people who have worked full (or even part-time) and paid taxes (“FICA taxes”) most of their adult lives will be eligible for Social Security Disability benefit if they become disabled.
Understand the consequences of withdrawing from the workforce for personal or family reasons.
People who have not worked and paid Social Security taxes during the five-year period prior to their disability will not receive SSDI benefits. Specifically, to be eligible for disability benefits, you will need to have worked 5 of the last 10 years. There are special rules for younger people. Detailed rules can be found at the following link: www.ssa.gov/planners/credits.html#h3. Especially if you have many gaps in your employment, the best way to know if you are protected through the Social Security Disability program is to call the Social Security Administration to find out whether you are currently insured for disability benefits.
This is a potential trap for many, especially stay-at-home (work in the home) spouses. Consider a woman who plans to stay at home with her young children and then return to work. If she becomes disabled after staying out of the workforce for five years, she will have lost the ability to file for Social Security Disability benefits.
It is possible to maintain eligibility by working part-time. In 2018, earning just $5280 per year will maintain eligibility. (This number is inflation adjusted and changes every year.) If you have MS and can work, consider working at least part-time, intermittently, or limiting your hiatus from work to less than five years.
Understand the risk of transitioning from a private employer to a public employer.
Those who work for government agencies and public entities sometimes pay into a Social Security alternative, such as the Public Employees Retirement Association (PERA) instead of Social Security. In general, this is fine; PERA also pays disability benefits when someone becomes disabled. Rarely, however, a significant problem arises where somebody who has paid into Social Security takes a break of a few years and returns to work as a public employee, such as a teacher. If someone makes this change and becomes disabled a few years afterwards, he or she may not be insured through either program. PERA generally requires an employee to work five years before becoming eligible for disability benefits. An employee moving from Social Security to PERA may wind up unprotected in certain situations.
Be prepared for at least a five-month income gap—or longer —if you become disabled and depend on Social Security. Social Security has a five-month exclusion period. If your claim is favorably determined, your best-case scenario is to receive an income after this five-month exclusion. You may need to prepare for this gap, especially if you do not have other support or private short-term or long-term disability benefits. Social Security’s standards are very demanding, and many claims (65%!) are initially denied. In that case, you may need to request a hearing before an administrative law judge. Unfortunately, getting a hearing scheduled generally takes at least an additional year. If this becomes necessary, you may have to struggle for approximately 18 months without an income.
Anticipate that your medical record may not fully support your disability. Whether or not you are found disabled will largely depend on your medical record. For starters, this means that you have to have a medical record! For the most part, seeing a so-called alternative practitioner, such as a chiropractor or acupuncturist, will be insufficient. If you are not receiving care for your progressive disease a traditional clinician (psychologist, medical doctor, osteopath, physician, physician assistant or nurse practitioner), you will have a particularly hard time proving that you are disabled. You will need to discuss your symptoms and workplace challenges with your clinicians at each visit, creating a history of your challenges that are recorded in your medical record.
Additionally, for some symptoms, such as cognitive dysfunction, you may need special testing. If your progressive disease is causing problems with thinking, ask your clinician to consider referring you for neuropsychological testing, which is the best way to have these limitations measured. Similarly, if your progressive disease limits you by creating significant fatigue, you may need a different sort of specialized test, known as a functional capacity evaluation.
Make sure you have a clinical team that will support your disability application. In addition to clinical expertise, you will occasionally need advocacy from your clinical team. A successful disability claim will depend on a strong medical record and support from your clinical team. As you proceed through the process of applying for any disability program, your clinicians may be asked to fill out documents on your behalf. Beware: some clinicians “don’t do disability” paperwork; apparently, they don’t view such paperwork as their responsibility.
It is understandable that some clinicians prefer to avoid involvement and the additional time and paperwork involved when patients become disabled. However, such a refusal to get involved may have financially ruinous consequences for you. Make sure that your clinical team will support you if necessary.
If you are considering applying for disability benefits (Social Security or private benefits), the stakes can be enormous. You should consult a lawyer with expertise in these matters.
This article has been adapted from a version that appeared in a previous issue of InforMS.