Planning for Long-Term Health Care

By Janna Dutton, J.D.

Originally published in the Summer 2010 issue of PDF News & Review.

Everyone benefits from planning ahead for legal issues and health care.  Planning ensures that your needs and preferences will be met in the case of an unexpected illness, disability or chronic disease like Parkinson’s disease (PD).  If you or a loved one is already living with Parkinson’s, the process is especially important to your lifestyle and peace of mind.

There are several elements to contemplate when planning for your future with Parkinson’s.  Among the most important are making provisions for long-term care (including Social Security and Medicare); designating an agent for your health care; and appointing someone to execute power of attorney for your finances and a living trust.  This article begins a four-part series covering each of these issues, beginning with long-term care.

What is Long-Term Care?

When most people think of long-term care, they think of a nursing home (now called a skilled nursing facility).  But the concept also encompasses such support systems as assisted-living communities and the in-home aides whom you may bring in to help with personal needs such as dressing, shopping, eating and cooking.  It can also include community services, such as Meals-on-Wheels.  You may need one or more of these services, depending upon when you were diagnosed, the rate at which your Parkinson's disease is progressing, and your preferences.  Some people are happy in an assisted-living community; others prefer to stay home and bring in home health aides.

Once you have decided upon your preferred plan for long-term and other medical care, you can estimate how much it will cost and assess how to pay for it (see examples below).

How Can You Pay for Long-Term Care?


Medicare — whether it is the general policy, or supplemental policies and/or the drug benefit — is one of the most important resources that a person with Parkinson’s has for his or her health care.  A federal insurance benefit, it is not tied to assets and income, but requires that you be 65 or older or determined disabled under the rules of the Social Security Administration (see section on page 7) and have worked a sufficient number of quarters paying into the social security system.  If you are under age 65 and seeking Medicare due to disability, you must undergo a two-year waiting period from the date of eligibility prior to receiving free hospital insurance coverage (Medicare Part A).  Once the two-year wait period is complete, you are then eligible to enroll in Medicare Medical Insurance (Part B) by paying a monthly premium.

Medicare A and B cover doctor’s visits, lab tests, hospital stays, physical, occupational and speech therapy and more.  Note that there are usually deductibles associated with such services. Typically you can purchase supplemental insurance to cover these costs. 

The biggest gap in Medicare coverage is the cost of custodial long-term care, meaning nursing home care or in-home assistance with activities of daily living.  It does cover, on a short-term basis (typically up to 100 days) skilled care in a nursing facility, when the need for such care follows hospitalization.

Parkinson’s medications can be costly.  If you are enrolled in Medicare A and B, you can also join a Medicare Advantage Plan (Part C) and a Medicare Prescription Drug Plan (Part D).  Part C plans provide additional coverage but may also require an additional premium.  The drug plan has also a large gap known as the “donut hole.”  What this means is that once you have reached an annual spending limit — typically around $2,700 — coverage stops, and you are responsible for the cost of prescription drugs for the rest of the year until you meet your plan’s designated cap.  Then, Medicare begins paying again.  In some cases, the plan will cover generic drugs, but not brand-name drugs. 

Private Health Insurance

The next step is to review your options for health insurance coverage.  These may include insurance through your employer, if you are still working.  If you have insurance, find out whether your policy covers the services you may need.  Pay attention to gaps — for example, does your policy cover in-home or nursing care?  If you are not working or are not enrolled in a group policy, what are your choices?  One possibility may be to continue your employer’s health care plan at your own expense.  This option is referred to as COBRA, named for the Consolidated Omnibus Budget Reconciliation Act.  It may allow you to extend your insurance for up to 36 months after you leave your place of employment.

Private Funds

Next, review your assets.  Do you have income to help pay for your health care?  What about assets such as savings accounts, stocks, bonds and pensions?  Do you have family members with whom you can live or who will be able to help you pay for care?

If you have the resources, you may want to look into purchasing Long-Term Care Insurance, which is designed to cover many expenses, including nursing home care.  Many of these policies are not currently available for people living with PD, but there may soon be a new program available under the health care reform law for anyone who is employed.  Learn more at


If you have very few resources, you may be eligible for Medicaid.  Medicaid will always cover skilled nursing facilities and, depending upon your state’s program, may cover assisted-living facilities and in-home programs.  If it is likely that you will need long-term care, and you have no source of paying for it other than Medicaid, start planning right now.  Medicaid is complex.  You will need to research what it covers in your state and take steps that will protect your assets.  We will discuss this subject in detail in the fourth article in this series.

Social Security Disability

Another resource that can help some people with PD to pay for long-term care and health care insurance is Social Security Disability Insurance (SSDI).  To be eligible, you must: 1) have paid into Social Security for a requisite number of quarters (usually 40, but this number is reduced for younger individuals); 2) demonstrate that you are unable to engage in substantial gainful employment because you are medically impaired; and 3) show that your impairment is expected to last at least 12 months.

If you meet these requirements, you should qualify.  The Social Security Administration uses what is called the Listing of Impairments for Parkinson’s and other diseases.  It determines the level of Parkinson’s symptoms that a person has to prove to be considered disabled enough in order to be prevented from doing any gainful activity.  In brief, you must have: “significant rigidity, bradykinesia (slow movement), or tremor in two extremities, which, singly or in combination, result in sustained disturbance of gross and dexterous movements, or gait and station.”  The benefit you can receive is based on your earnings record.  Once you have been determined disabled for SSDI purposes for 24 months, you can then begin receiving Medicare benefits.

Making Your Plan

Looking into long-term care now will help to ensure that your wishes are met.  It can help you to take control of your Parkinson’s care and your life in the future.  In the Fall issue of News & Review, look for part two of this series, which will cover tips for designating a health care agent.

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Ms. Dutton is an Eldercare Attorney with Dutton & Casey, P.C. 

Next: Read "Legal Issues & Parkinson's: Delegating Decisions for Health Care"

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