Legal

• Employment, business shareholder or other agreements.
• A long-term disability income replacement contract or contracts, either provided by an employer or purchased privately before the onset of PD (such as a disability insurance policy).
• Life insurance policies or credit card agreement provisions that waive future payments after disability.
• Long-term care policies that will pay benefits for care, usually at home or at a long-term care facility.

• What are your rights from those sources?
• When do they become rights or when are they secured?
• How do you exercise such rights? Are there reporting obligations to avoid jeopardizing those rights?
• How do they fit together? Might your statements or claims under one arrangement adversely affect your rights under another?
• How can you maximize the bundle of rights that can be brought to bear to help ease the difficulty of managing your diagnosis of Parkinson’s?

With respect to employment, "no covered entity [employers employing more than 15 employees] shall discriminate against a qualified individual on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions and privileges of employment."

• The ADA clearly establishes that garden-variety discrimination is prohibited (e.g., a covered employer cannot refuse to hire or promote someone due to disability), as are screening mechanisms that have an unequal impact on people who live with a disability.
• Included among the unlawful employment practices established by the ADA is "not making reasonable accommodations to the known physical or mental limitations of an otherwise qualified individual with a disability who is an applicant or employee, unless such covered entity can demonstrate that the accommodation would impose an undue hardship on the operation of the business of such covered entity."
  • Examples of reasonable accommodations include schedule modifications, job restructuring, leaves of absence, transfers, time off for doctor’s appointments and more. Employees who need a reasonable accommodation to perform the functions of their position must request one from the employer. The employer’s ADA policies may provide guidance as to whom such a request should be made.
• The ADA also establishes several defenses for employers.

Often there is a balancing of employer and employee interests. For example:

• An employer can ask whether an applicant can perform the essential functions of the position applied for but cannot lawfully inquire about the applicant’s disability or ask other medical questions until after making a conditional job offer.
• After a conditional offer of employment is extended to the applicant, the employer may ask disability-related questions and perform medical and psychological evaluations of the applicant, provided that if any such information is used as a basis not to hire the applicant, the reasons must be job-related and consistent with business necessity.
• After an employee is hired, any medical examination or inquiry must be job-related and consistent with business necessity.

With respect to public services, "no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of services, programs, or activities of a public entity, or be subjected to discrimination by any such entity."

There are a number of specific requirements for public transportation and again, several defenses for public entities are established.

With respect to places of public accommodations, "no individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation."

• There are several defenses, including that the removal of barriers to access is not "readily achievable," which the ADA defines as "easily accomplishable and able to be carried out without much difficulty or expense."
• Another limitation is that the ADA does not "require an entity to permit an individual to participate in or benefit from the goods, services, facilities, privileges, advantages and accommodations of such entity where such individual poses a direct threat to the health or safety of others."

• Many states have extended COBRA benefits to small employers as well. Check with your state insurance department.
• When your COBRA option ends (or if you're never eligible for COBRA), you're then eligible to continue coverage under the newer federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) law.
• Usually, if you have Parkinson’s, your best option when leaving a job is to first elect the COBRA option and then later, the HIPAA option, because you don’t have to qualify medically for either.
• If you are married and your spouse has group health coverage through an employer, 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.

• Availability of coverage begins the later of the date your COBRA options expire, or the date your employment ends if you are not eligible for COBRA.
• The decision as to who provides the insurance for this portable product is left to the individual states.
• Regardless of who provides the continuation of coverage, the guarantee is real.
• Important for people with Parkinson's, the HIPAA law prohibits any exclusions or limitations for preexisting conditions.

The Affordable Care Act is the healthcare reform act passed in 2010. The first thing you need to know is that if you are covered by Medicare, Medicaid, a veteran health program, an employer, or an employer-sponsored health plan, you don’t need to go out and get a new insurance plan. However, it is important that you understand the changes that the Affordable Care Act has brought.

• If you already have health insurance through your employer you don’t need to get a new insurance plan. The insurance plan offered by your employer will continue to cover you. There may be some changes in fees or services, and you should talk to your employer about changes to your plan.
• No insurance company will be able to charge you more because you have a chronic condition.
• If you currently don’t have health insurance, you will need to get one or you will be penalized. Individual insurance plans (the kind you buy yourself, not through an employer) may present some problems if you have Parkinson’s because this type of insurance plan doesn't have to cover preexisting conditions. While searching for the best health insurance plan for yourself, consider this information. You need a plan that covers you and your specific needs — for example, good prescription coverage and coverage of allied health professional services.
• All health plans will cover a set of 10 essential benefits including 15 preventive health services and chronic disease management. Depression screening, included among the preventive health services, is especially important for all those diagnosed with Parkinson’s.
• If you cannot afford insurance you will be able to apply for premium credits.

• Those with Medicare don’t need to go out and change their insurance plan following a Parkinson's diagnosis. No matter how you get Medicare, whether through Original Medicare or a Medicare Advantage Plan, you’ll still have the same benefits and security you have now.
• If you are adversely impacted by the Medicare Part D prescription drug coverage gap (commonly referred to as the “donut hole”) you will receive a discount on brand-name prescription drugs covered by Medicare when you reach the coverage gap. The coverage gap amount — $4,430 in 2022 — and discount may change each year. The discount is applied automatically in your pharmacy. Visit AARP's primer on Part D prescription plans for more need-to-know information.
• Those meeting specific income and other limits may qualify for the Extra Help program. It helps with Medicare prescription coverage costs.
• More preventive services will be available for you. On top of a free yearly Wellness Visit you will be able to get services such as a colonoscopy or mammogram without having to pay for the Part B coinsurance or deductible.

The Marketplace, also known as the “Health Insurance Exchange” is like a virtual insurance mall. It is run by either your state or federal government. Visit healthcare.gov to find out who runs the Marketplace in your state. After that:

• Apply for coverage
• Compare your options
• Enroll

Find a personalized list of programs you may be eligible for and a checklist to help you get ready.

Tip: If you participate in research, health plans will be required to cover your routine patient care-related costs.

Once you fill out an application you will be able to:

• View all the health plans in your area.
• Find out if you can get lower costs on your monthly premiums for private insurance plans.
• Find out if you qualify for free or low-cost coverage available through Medicaid.
• Try Healthcare.gov's Income levels & savings calculator to see what plans you might qualify for based on your household.

• AARP’s ACA Health Insurance Enrollment Checklist
• Medicare Plan Finder tool that can help you get a more accurate cost estimate, coverage information and medication coverage information.
• AARP's Medicare Resource Center
• Americans with Disabilities Act (ADA)
• Family and Medical Leave Act (FMLA)
• Consolidated Omnibus Budget Reconciliation Act (COBRA)
• Health Insurance Portability and Accountability Act of 1996 (HIPAA)
• Affordable Care Act
• Medicare
• Medicaid
• Extra Help
• Información en español

Most veterans (and many surviving spouses) are eligible for various benefits programs that can help you now and in the future. For more information, visit the U.S. Department of Veterans Affairs' VA health care.

This document allows you, the principal, to designate an agent, called an attorney-in-fact, to handle your financial affairs, as well as tax and legal matters, during incapacity. This is one of the most important documents for any person with Parkinson's. The term "durable" means it remains valid even if you become disabled. Some common tasks for an attorney-in-fact include:

• Moving funds from a savings account to a checking account and paying bills.
• Making required minimum distributions from an IRA.
• Communicating with utility, insurance, and mortgage companies.

A durable power of attorney may also allow an attorney-in-fact to transfer assets into a revocable trust. However, each state has different laws about the financial powers given to the attorney-in-fact. Therefore, it is important to consult with an attorney licensed in your state to have a power of attorney drafted.

Some states recognize a "springing" power of attorney, where the attorney-in-fact listed in the document will have the authority to act when certain requirements are met, such as the determination of two doctors that the principal is incapacitated.

Tip: "Incapacity" is a term that is too often viewed by legal and financial professionals as a light switch — you either are or you are not incapacitated. The reality is that incapacity can be difficult to determine. Someone with dementia may have days of complete lucidity and days of confusion. Because each state may have a different definition of incapacity, it is important to work with an attorney licensed in your state.

This is a document detailing your wishes regarding assets and dependents after your death. A will must be probated, which is the court-supervised legal process of validating the will and designating a person or entity (the “executor”) to distribute your assets per the terms of the will. Only probate assets will be distributed under the will. Probate assets include assets that are owned in the name of an individual. It does not affect the distribution of non-probate assets.

Non-probate assets include:

• Assets owned jointly with rights of survivorship.
• Assets with a beneficiary designation such as a pension, IRA life insurance, or accounts that have a pay on death (POD) or transfer on death (TOD) designation.
• Assets held in trust.

Tip: Prepare a balance sheet listing all your assets and liabilities and indicate what document will control how those assets will be distributed. You might be quite surprised to find that very little is governed by your will.

If you have children who are minors, a will is incredibly important. It is within the will that you will designate a guardian to look after your children when you are gone. Typically, the surviving parent will become the sole caregiver of the children. However, in the event of simultaneous death or if the other parent has predeceased or is not in the children’s lives, you can state who you want to care for them. If you do not designate a guardian, a judge, someone who knows nothing about you or your family, will decide who becomes guardian.

A will may include provisions that allow for your assets to remain in trust for the benefit of your loved ones. This is called a will with a testamentary trust. In the simplest of terms, a trust is a legal arrangement that includes three parties:

• The grantor – the person(s) who creates the trust
• The trustee – the person(s) who manages the trust assets
• The beneficiary – the person(s) who receives the benefits of the trust

Think of a trust as a bucket. Your will creates the bucket and puts your assets into the bucket. The trustee is responsible for managing all of the assets that are in the bucket. The trustee then distributes assets from the bucket to the beneficiaries per the terms outlined in the will.

Testamentary trusts are trusts that are created after you pass. Testamentary trusts are often used with minor children or young adults who may not be mature or responsible enough to handle large sums of inherited money. Assets in a testamentary trust may be protected in the event of a divorce and are protected from creditors. However, the document must be appropriately drafted so it is important to work with an attorney when creating your estate plan. In the context of planning for Parkinson's or any other chronic illness, having assets held in a properly crafted trust can be an incredible benefit, because a trustee other than the person with a health challenge can help manage trust assets for the person with a health challenge.

A Revocable Living Trust is created and funded during a person’s lifetime. Typically, the person creating the trust is also the initial trustee and has control over the assets in the trust. A revocable living trust can be a very powerful tool for managing your assets as your PD progresses and, if affordable and attainable, should be considered.

The benefits of a revocable trust are that you can be the initial trustee and name successor trustees to manage your assets for you and your loved ones if your Parkinson's progresses to a degree where you cannot do so. If you become incapacitated, the successor trustee has authority over all the assets in the trust. The successor trustee can take over bill payments, make sure taxes and insurance are covered, make updates and improvements to real estate titled in the name of the trust, and pay healthcare costs and dental expenses.

Using a revocable living trust with a successor trustee can be a safer and clearer arrangement, with less impediments and problems, than relying only on an agent under your durable power of attorney to manage assets. It is important to work with an attorney licensed in your state of residence to help draft a revocable living trust because the laws governing such trusts are state specific.

One type of trust that may be useful for people with Parkinson's is often referred to as a Medicaid, or pay-back, trust. If properly structured, such a trust may be able to protect assets so they may be passed along to family members or others of your choice, while keeping you eligible for expensive care, such as at a nursing home.

Tip: Medicaid rules are ever-changing and differ considerably from state to state. If you believe that such planning might be useful, consult an attorney in your state that specializes in Medicaid planning. Be especially careful about following any generic internet advice or guidance from friends. See National Academy of Elder Law Attorneys at www.naela.org.

Planning with documents known as advance directives can help ensure that your wishes regarding your physical and financial care during incapacity are followed, and that your resources are used appropriately.

The most powerful and safe arrangement is for you to use is a fully funded revocable trust and a durable power of attorney.

This document "speaks" for you regarding your wishes for life-prolonging care when death is imminent as a result of terminal illness or injury. Please note that the living will is valid in most but not all states. Consult with an attorney licensed in your state to discuss a living will.

Be certain to address religious beliefs, your desire to have experimental medical treatments, wishes to donate organs for transplant or, in particular, to foster PD research. You might wish to include an express provision concerning donating brain tissue samples for Parkinson's research efforts. The language should be specific enough to assure that the donations will be used for PD research.

Tip: Many of these issues are not dealt with in most standard forms and you will want to tailor standard documents to address your particular concerns and wishes as a person with Parkinson's.

Failure to sign advance directives that comply with your state's laws prior to incapacity can have adverse consequences. Without a durable power of attorney for financial matters you may be subject to a costly, court-ordered guardianship or conservatorship. Without a DPA for healthcare, or a living will, your loved ones and physicians will be left guessing about your desires for life-sustaining treatments and you might need a court proceeding for a guardianship of your person (as distinguished from the guardianship proceeding for your property as noted above).

Your durable power of attorney for healthcare can be, and often is, someone other than your DPA for financial matters. The documents address very different matters and that often calls for different skills and temperaments.

Tip: Never name someone you feel obligated to name, e.g., your oldest child. Instead name the person and successors to that person that you feel will perform these vital tasks as best as possible and as consistently as possible with your wishes. Talk to the person you wish to name to be sure they are willing to take on the role and know your expectations.

• Coordinate meetings for the times of day when you will likely be best able to fully participate. Ask your advisers for extra scheduling flexibility.
• Begin planning immediately and review your overall plan with your advisers at least annually. That way, you create a history of your wishes. You can then fine-tune your documents and planning as your feelings and perspectives change. You'll avoid the struggle many face when endeavoring to sign a will or make other significant decisions after their disease has progressed substantially.
• Your estate planning attorney might need to take additional precautions to document your competency to execute legal documents as Parkinson's progresses, including a letter from your attending neurologist about the cognitive impact of PD on you, your medications you are taking and more.
• Request or prepare an agenda in advance of any meeting.
• Have someone accompany you to meetings to assist by taking notes for you.
• Prepare an action list of specific steps after each meeting. Break planning into phases.