Insurance

Health insurance is of extreme importance to people with Parkinson’s. Some will be fortunate to have health insurance through their place of employment. After the employment relationship has ended, some plans allow those leaving due to disability to maintain their health insurance coverage until eligible for Medicare or until retirement. For others, federal law mandates that employers offer COBRA (Consolidated Omnibus Budget Reconciliation Act) coverage for 18 months after employment has ended.

People with PD need to be educated about Medicare, the federal health insurance program explained in this AARP article. The following people are covered by Medicare:

• Those eligible for Social Security or Railroad Retirement benefits who are age 65 or older
• Those under age 65 who’ve waited the requisite 24 months after being awarded Social Security Disability (SSDI) or Railroad Retirement Board Disability (RRB) benefits
• Those of all ages having ALS, or Lou Gehrig’s disease, once SSDI or RRB benefits have been awarded
• Those of all ages with end-stage renal disease, or kidney failure, beginning three months after starting dialysis or retroactive to the first month of self-dialysis.

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Medicare coverage includes the following options:

• Part A – Hospitalization Insurance: Benefits include: hospitalization; limited skilled nursing facility care; home healthcare; and hospice care.
• Part B – Medical Insurance: Used together with Part A, this is known as Original Medicare. Part B covers: medically necessary doctors’ services; outpatient medical, hospital and surgical services; clinical laboratory services; home healthcare; medical supplies; and various preventive services such as flu shots and mammograms.
• Part C – Medicare Advantage: Part C offers an alternative to Parts A and B. These plans are offered by private insurance companies that contract with Medicare to provide all Medicare Part A and Part B benefits. At a minimum, these plans cover all Medicare Part A and B services. In most cases, there are extra benefits and lower co-payments than in the original Medicare plan. In addition, most Medicare Advantage Plans offer prescription drug coverage.
  • Medicare Advantage Plans may present issues for those diagnosed with a chronic condition. Medicare Advantage Plans require you to go through their specific network of doctors and health care providers, which may limit the enrollee’s choice in providers. Medicare Advantage plans also require prior authorization for certain services, which can delay or prevent the receipt of treatment. Additionally, there may be copays and deductibles which will result in additional charges for an enrollee who is treating a chronic health condition. The out-of-pocket charges associated with a Medicare Advantage Plan can outweigh the benefit of a low premium.
• Part D – Prescription Drug Coverage: Coverage includes both brand-name and generic prescription drugs. Part D plans are run by private companies that are approved by Medicare. Part D coverage is optional and available to those enrolled in traditional Medicare (Parts A and B) or in Medicare Advantage plans that do not offer prescription drug coverage.
• Medigap for Parts A and B: Also known as Medicare Supplement insurance, these policies are sold by private insurance companies and help to pay for copayments, coinsurance and deductibles associated with Original Medicare. These policies fill the “gaps” in Original Medicare. An example of a gap would be the 20 percent co-payment due on a Medicare Part B claim for a visit to the doctor. Medigap coverage is only available to those enrolled in Medicare Parts A and B.

To make sense of these Medicare choices, see AARP's Understanding Medicare’s Options. When it comes time to enroll, the first decision you will need to make is whether to go the traditional Medicare coverage route with Parts A and B, or to go with a Medicare Advantage, or Part C, plan. Afterwards, you will need to determine prescription drug coverage.

Those choosing Original Medicare, Parts A and B, will need to add prescription drug coverage by enrolling in either a Part D plan or a Medigap plan that includes drug coverage. An alternative to Original Medicare would be to select a Medicare Advantage, Part C, plan, which can provide prescription drug coverage in addition to hospitalization and medical coverage.

Most Medicare Advantage plans include prescription drug coverage, but you should review the plan you select to determine whether you would need to enroll in Part D coverage.

Medicare is complicated. There are typically many plans and features, and it is difficult to compare plans. Fortunately, these resources can help:

• The government’s official website for Medicare. The site allows you to compare plans and enroll online.
• State Health Insurance Assistance Program (SHIP) — provides free, unbiased health information. Part of a national network of state health insurance assistance programs located in every state.

CAUTION: Medicare insurance can be maintained if an individual attempts to return to work, but, as with SSDI, there are very strict rules that apply. Without adherence to these rules, both your Medicare and SSDI benefits may be jeopardized.

• The federal national health insurance program for those ages 65 and older or for those collecting Social Security disability benefits.
• Eligibility begins on the first of the month that you turn age 65 or have collected Social Security disability benefits for two years.
• Part A (hospitalization) is generally free to you.
• Part B (physician and other charges) you must voluntarily elect and pay for monthly.

The good news is that eligibility for both is guaranteed regardless of health, which means that you can't be turned down for Parkinson's.

Medicare has at least three significant shortcomings:

1. No coverage traveling outside the U.S. or Canada
2. No coverage for medical charges that exceed what Medicare will allow (i.e., if Medicare allows $30,000 toward your $50,000 heart surgery bill, you’re out $20,000)
3. A 90-day-limit on hospitalization (plus 60 bonus days that can be used once in a lifetime)

All three shortcomings can be covered by a good Medicare supplement policy. Be wary though: A high percentage of Medicare supplements being sold on the market do not protect you for all three gaps.

VIEW AARP'S OVERVIEW OF MEDICARE SUPPLEMENTAL INSURANCE

• Covers most drugs, but subject to a confusing array of co-payments and deductibles.
• Different from Parts A and B which you buy directly from Medicare, you buy Part D direct from private insurance companies and agents, if any.
• Like Parts A and B, you have open enrollment for the same six-month period around your Medicare eligibility date, during which you cannot be turned down for coverage for any preexisting health condition (e.g. Parkinson’s).

Entire books have been written about Part D. Follow these four guidelines as you explore your options:

1. Don't buy direct from an insurer without an agent. Choose an insurance agent with expertise in the subject who can guide you through the choices and make recommendations to you. There’s usually no added cost to you to have an agent.
2. Check with your pharmacist. Many can tell you which of the many Part D plans available will cover all of the existing drugs you currently take.
3. Pick the plan that makes the most sense, but don’t agonize over your decision. Every year from November 15 through December 31, you will have another open enrollment period. So, if you at first choose poorly, you can make a different choice at the end of every year.
4. Test-drive the plan you like best. See how well it covers your name-brand and generic drugs. If it doesn't meet your needs, change plans at the end of the year. Usually, if you have Parkinson’s, your best option when leaving a job is to elect the COBRA (Consolidated Omnibus Budget Reconciliation Act) option because you don’t have to qualify medically. However, if you are married and your spouse has their own job and their own group health coverage, you generally have the right under the law, if you apply within 30 days of losing your group coverage, to be added to your spouse’s coverage with no exclusion for preexisting medical problems.

Tip: Even if you take no drugs when you’re first eligible, opt for some basic plan that costs you little or nothing now.

Other information to keep in mind regarding Medicare Part D:

• If you have a need for prescriptions later, you can upgrade your coverage on the next November 15. That way you will avoid a late enrollment penalty of 1% additional premium for each month you are eligible but don't take coverage (for example, a delay of nine months means nine percent of the national base beneficiary premium will be added to the premium for your drug coverage for as long as you have Medicare drug coverage).
• You will not be penalized for delaying enrolling in Part D if you are still employed past age 65 and have group health insurance that includes prescription drug coverage as good as or better than Part D coverage.
• If you delay enrollment, your group insurance company will notify you in writing that your coverage is “Credible.” The penalty won’t then apply to you.

Medicare costs can fluctuate annually. AARP can help you understand annual out-of-pocket costs here. The following will give you a rough idea of the money you can expect to spend on Medicare health insurance coverage based on 2022 estimates:

• Part A – Hospitalization: If you've met your $1,556 benefit period deductible with Original Medicare, you won't pay any daily coinsurance for your first 60 in-patient days. Coinsurance rates are then $389 per day for days 61 to 90, increasing to $778 per day for the 60 “lifetime reserve days” you have over day 90. Following the use of the lifetime reserve days, you pay 100% of costs.
• Part B – Medical: Premiums must be paid for Part B coverage. Charges for monthly premiums are based upon income, and in 2022 the premium for a new, single Medicare enrollee with a household annual income under $91,000 is $170.10. That is also the monthly premium for a newly enrolled married couple with an income of $182,000 or less.
• Part C – Medicare Advantage: The income-based premium charges due for Part B coverage also apply to Part C. Most Medicare Advantage plans charge a fee over and above the Part B premium amount because they provide more services than Part B, like prescription drug coverage, and sometimes vision and dental benefits. There will also be out-of-pocket costs such as premiums, deductibles, co-payments and co-insurance. These costs can vary widely as the plans are privately administered. Many Medicare Advantage plans may have “networks” of healthcare providers, and if your providers are not in the network for the plan you are interested in, you will have to find new providers or risk not taking full advantage of your insurance coverage. It is a good practice to check with your providers prior to committing to a plan to see if they are in the network for your plan of interest.
• Part D – Drugs: The national average for Part D premiums is $33.37 per month. Only those enrolling in Original Medicare (Parts A and B) who do not have a Medigap policy that includes prescription drug benefits will enroll in Part D.
• Medigap (Supplement Insurance): The cost of a Medigap policy can vary widely. Medigap policies are priced in three ways: 1) Community-rated; 2) Issue-age-rated; and 3) Attained-age-rated. Each standard plan offers a different set of benefits, fills different "gaps" in Medicare coverage and varies in price.

CAUTION: Your ability to obtain Medigap coverage may be limited if you are under 65 years of age and receiving Social Security due to disability. This is especially true if a policy has an exclusion for preexisting conditions. Medicare Advantage plans, however, do not generally impose such an exclusion and are more accommodating to those with disabilities.

If you elect Medicare Parts A and B benefits and are unable to purchase a Medigap plan, you will still need prescription drug coverage. You will need to enroll in a Part D, prescription drug plan. If you miss the deadline for enrollment in Part D, you will have to pay a late enrollment penalty.

Be sure to check on all of your coverage options before opting to enroll in Medicare Parts A and B. AARP's Medicare Enrollment Guide can help you navigate each step.

People living with Parkinson’s should apply for Medicare benefits as soon as possible. Gaps in medical insurance coverage can occur during the extended amount of time it can take to process a Social Security Disability Insurance SSDI application, especially if an appeal is involved.

Once you become eligible for Medicare, you must choose the coverage options that will best suit your healthcare and budgetary needs:

• Part A – Hospitalization: Eligibility is automatic on the day you turn 65 years of age. If you are disabled and under age 65, eligibility is automatic 24 months after the date of your SSDI or Railroad Retirement Board (RRB) disability.
• Part B – Medical: Eligibility is automatic on the day you turn 65 years of age. If you are disabled and under age 65, eligibility is automatic 24 months after the date of your SSDI or RRB disability. If, for whatever reason, you did not get signed up for Part B when you first became eligible, you can enroll during a General Enrollment Period, from January 1 through March 31 of each year. If you failed to enroll because you or your spouse had group coverage through employment, you can enroll during a Special Enrollment Period. You may be assessed a late-enrollment penalty for failing to enroll in Part B when first eligible to do so.
• Part C – Medicare Advantage Plans: Eligibility is automatic on the day you turn 65 years of age. If you are disabled and under age 65, eligibility is automatic 24 months after the date of your SSDI or RRB disability date. Your window for first time enrollment is generally three months before you turn age 65, the month of, and three months after your eligibility date.
• Part D – Prescription Drugs: Eligibility is automatic on the day you turn 65 years of age. If you are disabled and under age 65, eligibility is automatic 24 months after the date of your SSDI or RRB disability. Your window for first-time enrollment is generally three months before you turn age 65, the month of and three months after your eligibility date. You can also buy a Part D plan during the Annual Coordinated Election Period, which runs each year from November 15 through December 31. During this period, you may change prescription drug plans or add a drug benefit. Also, there are certain specific situations which qualify for a Special Enrollment Period which allow you to enroll outside of the Annual Coordinated Election Period without penalty.
• Medigap for Parts A and B: For most, the initial enrollment period is the six-month period beginning the day you turn age 65 and are enrolled in Part B Medicare. For those under age 65 receiving Medicare due to disability, Medigap policy availability is limited.
• Changing Plans: After your initial Medicare enrollment, each Fall you can— and should — review your healthcare and prescription needs to see if you would benefit by switching to a plan that is better suited to your current medical or budgetary needs.

You may switch to another plan each year during the regular Annual Election Period from November 15 through December 31. Your new plan will be effective as of January 1.

If are unhappy with your plan, you can make limited changes to your coverage between January 1 and March 31, so long as you do not add or drop prescription drug coverage.

It's critical to have this insurance if you are receiving Original Medicare benefits.

Medicare coverage shortcomings include:

• A limited number of days of room and board hospitalization coverage.
• No coverage outside the U.S. or Canada.
• No coverage for the physician charges that exceed what Medicare allows for certain procedures.

Features of a good Medicare supplement policy:

• Covers hospitalization expenses for up to a year or more beyond what Medicare allows.
• They cover care received outside U.S. or Canada.
• They cover 80% or more of the excess physician or surgeon charges that Medicare disallows, which you are still responsible for.

Guaranteed Acceptance

It is important to your peace of mind for those with Parkinson’s to know that federal law gives you six months from your Medicare start date to receive the best Medicare supplement from any insurance company, guaranteed, regardless of your health.

This means that when your current individual, or group health, policy ends at age 65 or if you have been receiving Social Security disability benefits for 24 months, you immediately qualify for Medicare and the right to buy a top Medicare supplement, with no interruption in coverage at all and no preexisting condition exclusions. Health coverage that you can keep for the rest of your life!

This federal program, administered by the states, is designed to provide health coverage and long-term care for people with low-income and/or assets.

To qualify for Medicaid to assist in paying for long-term care, an applicant must meet various eligibility requirements, including asset limits, level of care requirements and others. Each state’s Medicaid program is based off the federal rules for the Supplemental Security Income program (SSI), but each state has different nuances depending on the individual design of their program. Due to this, eligibility for Medicaid can vary state by state.

Medicaid is a program that ensures that if you exhaust your assets, you will still be able to receive the long-term care services that you need. For planning associated with accessing Medicaid benefits, you should seek the counsel of an experienced elder law attorney.

Characterized by having to prove evidence of good health in order to qualify for a policy, preexisting conditions such as Parkinson's cause the application for insurance to be denied or the Parkinson's condition to be excluded.

The major advantage of individual coverage is that it can be continued to age 65 with no risk of cancellation or price increases specifically because of health conditions that develop over time. Individual coverage is a particularly good option for a person with Parkinson’s who purchased the policy when still in good health, prior to the Parkinson's symptoms manifesting themselves. Also, it is a good option for healthy caregivers and children.

• Generally provided by and at least partially funded by an employer.
• The employee usually has little or no choice of features.
• The principal advantage of group insurance is that coverage is usually available to newly hired employees without medical questions, making group insurance a good option for covering preexisting conditions like Parkinson's.
• Coverage typically ends when the employee’s job ends. But there are options to continue coverage at your expense. (See COBRA and HIPAA.)

• Many states offer health insurance for those who medically can’t qualify in the open market.
• The rates are only about 20% higher than similar coverage would cost a perfectly healthy person.
• The balance of the money needed to fund the claims is paid for with premium taxes of 2% of premiums for the healthy.
• If you have Parkinson's and are unable to get health insurance, check with your State Insurance Department for the availability of a product like this for you. The National Association of Insurance Commissioners provides contact information for these state departments here.
• If your state does not offer such a program and you really need the coverage, consider relocating to a state that does offer a program.

Health savings accounts were created by the federal government to give Americans two ways to save money on health insurance costs (30% to 50%). First, by creating a government-approved high deductible health plan (HDHP) and then pre-funding that deductible to an “allowed maximum contribution” each year in a special savings account (HSA) where the contributions are 100% tax deductible (much like an IRA contribution).

• Maximum contribution changes annually. For 2022, that maximum is $3,650 for individuals and $7,300 for families.
• Anyone age 55 or older can also put in up to an additional $1,000 per person under what the government calls a "catch-up” amount. For up-to-date “allowed amounts,” visit www.treasury.gov and click on the Health Savings Account link.
• You can use the dollars in your HSA to pay your deductibles if you need to, but you can also use those dollars to pay for just about any medical or dental expense that is not covered by your health plan (e.g.,laser eye surgery, root canals, alternative medicines, etc.)
• Any HSA dollars not spent this year will carry forward into the following years and could become supplemental retirement dollars.
• The major advantage of HSAs is that you get to pay your deductibles and insurance co-payments plus other uninsured medical expenses with before-tax dollars rather than after-tax dollars.
• For a current list of all IRS-approved medical and dental expenses, go to www.irs.gov and search for Publication 502.

Social Security benefits provide a critical safety net for millions of Americans, including many with Parkinson’s. Administered by the U.S. Social Security Administration (SSA) there are two key sources of government paid (income) benefits for people with disabilities:

1. Social Security Disability Insurance (SSDI), which “pays benefits to you and certain family members if you worked long enough and paid Social Security taxes.”
2. Supplemental Security Income (SSI), “pays benefits to disabled adults and children who have limited income and resources.”

In addition, people who have been entitled to Social Security benefits for 24 months are eligible for free Medicare benefits. The Medicare health benefit can be invaluable to people with Parkinson’s. For most people, the medical requirements for disability payments are the same under both SSDI and SSI, and disability is determined by the same process. In either case, the Social Security Administration asks for information about your medical condition, work and education history to help it decide if you are “disabled.”

Keep in mind that the SSA definition of disability stands on its own, separate and apart from the ADA definition or other contractual definitions that may apply to you in other contexts.

Social Security provides more than just retirement benefits; it also offers benefits for total disability. However, Social Security won’t consider you disabled if you can do just about any gainful occupation or if you can work part time. That is why people with Parkinson’s often have difficulty collecting the first time they apply.

How Social Security defines “disability”:

While the specific definition of “disability” for Social Security purposes is in the law itself, this is how the SSA describes disability:

“We consider you disabled under Social Security rules if, due to a medical or mental condition:

• You cannot do work that you did before and we decide that you cannot adjust to other work because of your condition(s), and
• Your disability is expected to last for at least one year or to result in death.”

What you should know:

• Social Security pays benefits to people who can’t work because they have a medical condition that’s expected to last at least one year or result in death.
• Generally, there is a five-month waiting period to receive disability payments once approved. Social Security pays your first benefit the sixth full month after the date it finds your disability began.
• Every year, Social Security mails a Statement to people age 60 or older with estimates of future retirement and disability benefits.
• Everyone age 18 or older can view their Social Security Statement online with a free and secure my Social Security account from the Social Security Administration. Visit www.ssa.gov/myaccount/statement.html to learn more about the online Statement and to sign up.
• After you receive Social Security disability benefits for 24 months, you will be eligible for Medicare.

LEARN MORE

• my Social Security: A free and secure account that provides personalized tools, whether you receive benefits or not. Use your account to request a replacement Social Security card, check the status of an application, estimate future benefits or manage the benefits you already receive.
• The Faces and Facts of Disability: Stories about individuals receiving Social Security, facts about Social Security benefits and resources for people living with disabilities.
• Social Security Matters: The official Social Security blog, a resource for staying up to date on Social Security tools, online services and program benefits.
• Social Security Disability Programs: A webpage with information on the two disability programs, how to apply and what to do if your application is denied.

Employers typically pay for a base amount of life insurance for their employees.

• Usually either for a flat amount (e.g., $50,000 each) or for some multiple of salary — most commonly one times salary.
• Additional amounts of life insurance are usually available to employees at their cost, on a payroll deduction basis, subject to some limited underwriting.
• If you're still in good health and could qualify for individual coverage, pass on the group supplemental coverage because that coverage is normally available for less cost in the open market.
• Plus, individual coverage, unlike group coverage, won't cease when your job ceases.
• If you can’t qualify for individual coverage for whatever reason, then take all the group coverage you can get your hands on.
• Most group policies offer, at termination of employment, the option to convert to a more expensive permanent life insurance policy that you can continue indefinitely.
• If you have Parkinson's and leave your job or go on disability benefits, it's probably a wise idea to convert the group life insurance coverage.

This is available to anyone who can qualify medically in two forms: insurance coverage for the duration of your life, called permanent insurance, and insurance for a certain period of time, typically 10, 20 or 30 years, called term insurance.

• Buy term insurance if the need is temporary and permanent insurance if the need is permanent. If you are covering your family during the childrearing years, term insurance is smarter and a fraction of the cost of permanent insurance.
• But if you're a 60-year-old caregiver desiring to provide your husband who has Parkinson's a level of ongoing care if you die, permanent insurance might be a better choice.
• People with Parkinson’s in the early stages of their disease can shop around and can usually find life insurance.
• The rates will be quite a bit higher due to the shorter life expectancy of those with Parkinson’s but coverage is available.

If you have a spouse who is or will be a caregiver for you, buy more than the usual amount of life insurance on them — enough to not only replace their income, but also enough to hire a caregiver for you.

With long-term care costs nearing $100,000 per year, this means buying at least $500,000 additional life insurance coverage on the caregiver.

Income replacement policies do exactly as their name suggests: they replace a person’s income when she or he is unable to work. Bear in mind that the amount of income replaced is typically limited to a maximum percentage of your earnings. There is also a cap or maximum amount of income on every policy based on what you purchased and any adjustments (e.g., for inflation) provided in the policy. So while these policies are generally discussed as if they “replace” income, they do not provide the same income.

Keep in mind:

• These policies are contractual in nature, as opposed to statutory.
• The nature of the benefit and the scope of a person’s rights to enjoy the benefit are set by the terms of the policy. This is important to understand because the details of the policy will govern what you are entitled to and what steps you must take to secure that benefit. As soon as you are diagnosed, read the entire policy and be certain you understand what steps you must take. If possible, it is worthwhile to have an attorney review the policy with you so that you fully understand it. At a minimum, meet the agent who sold you the policy and enlist his or her help in understanding the policy.
• Typically, a policy will provide for the payment of a specified percentage of the person’s income (perhaps 60 to 70%), upon the occurrence of a triggering event (such as the onset of disability) for a specified period of years (typically until 62, 65 or retirement age) provided that the individual remains disabled as defined by the policy. While historically most people had retired at age 65, these age limitations were reasonable. For many people now, they may not be for many reasons. Social Security benefits may be deferred as a result of changes in the law or your endeavoring to obtain a greater benefit. In past years more generous employee pension plans were more common than now. Also, the idea of retiring at age 65 is not realistic for many people. For example, 82% of working Americans over 50 say it is at least somewhat likely they will work for pay in retirement. If Parkinson's prevents you from working as long as expected, relying on a disability policy that will end at age 65 when financially you would have been among the majority continuing to work into retirement years will not suffice financially to meet your needs. This is vitally important to understand now because, even for those with good disability insurance, it may not be enough.
• Income replacement policies can be privately purchased (usually only prior to the onset of disability) or provided as an employment benefit. Whatever type of policy you have, review it in detail as soon as you are diagnosed. Identify what reporting obligations you might have to the insurance company and when they must be given. Do not risk inadvertently overlooking your obligations under the policy. If you have a work provided policy evaluate what options you might have if you have to cease working at some point. Is the policy portable? Can you convert it into a private policy?
• Particularly in the latter case, they may be structured to provide a short-term benefit for an initial period of time (such as 100% income replacement for 6 months), followed by a different benefit for the duration of the coverage (such as 70% until retirement).
• Hence the terms short-term disability insurance and long-term disability insurance.

A key question regarding income replacement policies is what constitutes a triggering event entitling the covered person to payment under the policy in question. In other words, what is the definition of “disability” that triggers payment?

Because income replacement policies are contractual, the definition of “disability” can vary from contract to contract. You might find a number of different types of definitions of key terms in the policy. Some key terms are actually defined in the policy. In that case the policy definitions will control, not what you might consider a common English definition of the term.

Many policies will refer to the tax or other laws to provide definitions. For example, the policy might pay you a certain percentage of your gross income as defined in 26 U.S. Code Section 61. This might be referred to as Section 61 of the Internal Revenue Code. This can be advantageous to everyone as referring to a tax code can often provide considerable detail to understand exactly what the term means.

However, this will make it more complex and difficult for you to evaluate and understand each term, as you will have to do a bit of sleuthing to understand the definition. There will also be some important words or phrases that are not defined in the policy, or by reference to an outside law. This might occur because the attorneys drafting the language of the policy might have simply not realized there may be an uncertainty or lack of clarity with the term used. If your circumstances are unusual, it might be tough to apply such a term.

To really get a handle on your policy, you will have to struggle through this gauntlet. This is precisely why it is strongly recommended that you review all of this as soon as you are diagnosed, before disease progression or other challenges of living with PD take a toll.

Remember:

• It is important to know what your contract says in order to know if and when you might be paid.
• While the definition of “disability” is contract specific, one thing is likely: it will be a different definition than the one used in the employment portion of the ADA.
• The essential claim for benefits under short-term or long-term disability policies is that you cannot do your job or work at all (as opposed to an ADA request for job accommodation so you can stay on the job and want to do so).
• The most generous income replacement policies will be tied to the standard of whether you can perform your job, or one like it, suitable for your training and experience. These are referred to as “own occupation” policies. They are less commonly written and typically more expensive to purchase.
• In other words, you will get paid if you can’t do your specific job (as defined in the policy), even if you can still work at a different job or occupation.
• An example might be a physician who develops Parkinson’s. If they have such a policy, then upon becoming unable to do their job, payment would be forthcoming – even if the physician could do other work, perhaps such as lecturing or doing manual labor. Be very careful to understand exactly what this means under the terms of your policy. For example, if you work as a surgeon who cannot perform surgery but can perform office visits in your practice, your policy may still view that as performing work in the same occupation. The nuances of the definitions are critical.

Other policies might adopt a stricter standard: not whether you can do your job, but whether you can work, i.e., can you do any job? Obviously, this will make collecting on such policies more difficult. This standard may be akin to the one used by Social Security. Again, bear in mind that every policy is different. There is no “standard” policy. Even policies issued by the same insurance company will change over time. You must study and understand your own specific policy.

• Tip: Make a photocopy of your policy. Highlight key terms in yellow. Highlight the reporting steps you have to take in another color and the requirements you must meet to collect in a third color. Then read the entire policy from beginning to end, making notes in the margin. Then go back and read it again and try to answer the open margin notes. Often, the manner in which policies are written will require reading the entire policy because later provisions may provide definitions required for earlier provisions, etc. If there is a reference to an outside source, such as a tax law definition, search that term or phrase and print it on a page to insert into the policy. When you read the policy in the future you will have that language handy. It is only by reading and studying the policy many times that you will begin to pick up all the nuances.

It is critical to know if your policy retains the same standard for “disability” over time. In many cases, an income replacement policy may combine the two approaches, typically applying the easier to meet “Can you do your job?” standard for an initial period (e.g., two years) then switching to the more difficult-to-meet “Can you work/” standard. For people with Parkinson’s, this can make for a difficult planning process, since being awarded long-term disability for the initial period is by no means a guarantee that long-term disability benefits will continue thereafter. As suggested above, it is very important that you understand all your reporting obligations under the policy.

• Tip: Note in your calendar the dates of each new test or reporting obligation. So if your policy requires application of a different definition of disability after two years, note that date on a calendar and create a reminder two months earlier to begin preparing the documentation to demonstrate to the insurance company that you meet the new test.

Keep in mind that the ADA’s notion of “the ameliorative effects of mitigating measures” does not carry over in the context of income replacement, unless of course it is part of the long-term disability contract. Therefore, taking steps to get better (medication, surgery, etc.) could adversely affect your entitlement to the benefits under your policy.

This pays whenever you cannot work as the result of an illness or injury. It requires you to prove evidence of good health to qualify for a policy.

A major advantage is that the policy can be kept to age 65 regardless of job changes. Other advantages include:

• It is usually guaranteed renewable to age 65 and often times the pricing is locked in to age 65.
• Benefits are tax-free because the premiums were paid for with after-tax dollars.
• There is usually no offset for workers compensation benefits, which means you can collect both at the same time.
• There also is no offset for group benefits you receive from an employer.
• You do have the choice when purchasing a policy initially to decide whether or not to include an offset for Social Security benefits.

A good individual long-term disability policy should include:

• Benefits for partial ("residual") benefits to age 65.
• A future purchase option to regularly increase your coverage regardless of deteriorating health later.
• A cost-of-living adjustment rider that will increase your benefits while disabled by around 4% to 5% a year.
• And offer a lot more flexibility in terms of choices of benefits and features.

If you cannot get either individual or group disability coverage on yourself with Parkinson's or if you are currently already disabled from Parkinson's and have a spouse, it is recommended to load up on disability coverage on your spouse.

If they become disabled, not only have they lost their income, but you may very well have also lost their physical ability to help you in coping with your disease, requiring you to spend additional dollars for a caregiver for yourself and possibly your spouse too.

This pays whenever you cannot work as the result of an illness or injury. It requires you to prove evidence of good health to qualify for a policy.

A major advantage is that the policy can be kept to age 65 regardless of job changes. Other advantages include:

• It is usually guaranteed renewable to age 65 and often times the pricing is locked in to age 65.
• Benefits are tax-free because the premiums were paid for with after-tax dollars.
• There is usually no offset for workers compensation benefits, which means you can collect both at the same time.
• There also is no offset for group benefits you receive from an employer.
• You do have the choice when purchasing a policy initially to decide whether or not to include an offset for Social Security benefits.

A good individual long-term disability policy should include:

• Benefits for partial ("residual") benefits to age 65.
• A future purchase option to regularly increase your coverage regardless of deteriorating health later.
• A cost-of-living adjustment rider that will increase your benefits while disabled by around 4% to 5% a year.
• And offer a lot more flexibility in terms of choices of benefits and features.

If you cannot get either individual or group disability coverage on yourself with Parkinson's or if you are currently already disabled from Parkinson's and have a spouse, it is recommended to load up on disability coverage on your spouse.

If they become disabled, not only have they lost their income, but you may very well have also lost their physical ability to help you in coping with your disease, requiring you to spend additional dollars for a caregiver for yourself and possibly your spouse too.

Generally provided by the employer, new hires are typically eligible for coverage regardless of preexisting health conditions. However, typically preexisting health conditions are excluded either until the new employee has gone 12 months treatment-free or had the coverage for 24 consecutive months.

Benefits are usually for 60% of salary, payable to age 65 if you are disabled, but are offset by any benefits received from workers compensation, Social Security or even any other group disability plan. Group disability benefits are taxable, which means a disabled person will end up taking home only about 45% of their salaries — not 60%.

Group disability shortcomings

• Coverage rarely includes a cost-of-living adjustment factor that increases benefits yearly to a person on a disability claim to keep up with inflation.
• Group disability also often does not include proportionate benefits for partial disabilities, known as "residual" disability coverage by the insurance industry. (A disadvantage for people with Parkinson’s who can often work part-time for many years before being totally disabled.)
• While some of these group policies do offer an option to convert the group coverage to an individual policy if you leave the job, the conversion coverage is usually less broad and the pricing higher. However, this can still be a good option for people living with Parkinson's.

If you have Parkinson's and are still actively working yet cannot qualify for an individual disability policy, one option is to seek a new position that offers group disability benefits that include coverage for preexisting conditions, residual/partial disability benefits and the right to convert to an individual policy if you leave the job for whatever reason.

Long-term care insurance, sometimes called nursing home insurance, can be an invaluable benefit for people with disabilities, especially those with progressive illnesses such as Parkinson’s disease.

The prospect of not having enough funds to live comfortably and safely in one’s later years can be harrowing, and a good long-term care insurance policy can help create some sense of calm about the future.

Before evaluating long-term care insurance coverage, you should first prepare a realistic budget and financial plan. You really need to be certain you are within the appropriate spectrum of people who should consider coverage. For many people, coverage is too costly. It is not advisable to purchase coverage which you likely won’t be able to afford and then cancel it.

Some people who consider long-term care insurance coverage simply do not need it as they have more than adequate resources to pay for the care involved. For these people, they may nonetheless opt to buy coverage as a “luxury” purchase (simply because they want it and can afford it, not because they need it) or to use the long-term care insurance coverage to protect their estate to leave to their children. If you are in between these two groups and can afford coverage and do not seem to be able to afford not to have coverage, then you should evaluate the many options that are available.

As with income replacement policies and other insurance vehicles, the benefits of a long-term care insurance policy are contractual in nature. Long-term care insurance policies are some of the most complex insurance policies to evaluate. The rates, future increases in rates, coverages, exclusion from coverage and more can vary significantly from one policy to the next.

The terms of the policy will govern when you are entitled to benefits and what you will need to establish your entitlement.

If you have been diagnosed with Parkinson’s, immediately review in careful detail your long-term care insurance policy. This is similar to the advice given elsewhere in this website about reviewing any disability income replacement policy in the event of your diagnosis. It is vital to review your policy because of the significant differences in policy terms. Also, when people first purchase long-term care insurance coverage they often focus on cost, maximum benefits, the quality of the carrier and other factors. When you are diagnosed with PD, your analysis will differ. Now your focus has to be on whether the policy is in good standing, do you have to continue to make premium payments, are their options in the policy which you have or may elect which could affect coverage and what are the specific triggers for collecting (which is discussed in more detail below).

Typically, long-term care insurance policies are triggered by a need for assistance of some significant level.

A long-term care insurance policy will begin paying for care according to the terms of the policy. This can vary by contract:

• In some cases, occasional help at home to assist with activities of daily living can trigger payments.
• It may require a more moderate level of need, such as the need for regular in-home care.
• It may require meeting a higher standard based on inability, similar to Social Security’s threshold.
• Or perhaps a higher level must be established, such as medical certification of the need for nursing home care.

In shopping for long-term care insurance policies, or later for applying for benefits, it is important to know the specifics of your policy, not only for the triggering event(s), but also how the benefits may be used.

• Many long-term care insurance policies will pay for care while you still live at home. Indeed, it is a mistake to call these policies nursing home insurance – they are that, but oftentimes much more.
• Long-term care insurance policies are typically capped at a contractual dollar amount and will only pay up to the limits of your policy. And in the case of a progressive illness like PD, the types of services they cover can burn through your eligible benefit quickly. For many people, they are of great help, but not a financial solution.
• Don’t only consider long-term care insurance for the person with Parkinson’s but also for a caregiver spouse or partner. If you cannot qualify for new or additional coverage, your caregiver may.
• Because of changes in the long-term care insurance market, many life insurance policies are now available that include long-term care riders. You should investigate the benefits of these alternatives as well.
• You may qualify for an income tax deduction for the premiums you pay on long-term care insurance policies.

Tip: Even if you did not keep track of medical expenses or long-term care insurance premiums for deductions in the past, once you have been diagnosed with Parkinson’s your medical expenses might increase, and your income might decrease, so that you may now qualify for a deduction. Be careful in preparing this year’s income tax return based on last year’s (or preparing information for your CPA based on an organizer with last year’s information) since changed circumstances might change your ability to claim these deductions.

You might not need long-term care insurance if:

• Either your assets are so minimal that you qualify for the Medicaid program or you're willing to spend down your assets until you qualify for the program.
• Or you are financially independent enough to cover the long-term care costs out of your investment earnings without depleting the principal much.

Although long-term care costs differ widely from one area to another, insurer Genworth Financial estimates median monthly care costs ranging from $1,690 to $9,034 in 2021.

Ensure the company you choose meets two criteria:

1. Awarded the highest financial rating by the AM Best Company of A+ or A++. Rating information is available at www.ambest.com and your local library. You want an insurer solid enough to be around 30 years from now when you need the coverage.
2. They have a history of taking only modest rate increases on existing policies. With long-term care costs rising faster than the rate of inflation, companies that have a history of large rate increases could raise your premium over the years to the point where you have to drop the policy just about when you need to collect because you can no longer afford the premium. The agent you are working with can provide this rate-change history for you.