Knowing your legal rights as you continue to live your life with Parkinson’s disease (PD), especially if you are still working, can be empowering. Additionally, setting up a legal plan that reflects your personal wishes and circumstances while navigating Parkinson’s can bring peace of mind.
Both people with Parkinson’s and their care partners may have statutory (government-created) rights to be free from discrimination based on disability, and to participate in certain disability-based benefits programs.
Sources of Rights
- The right to be free from discrimination stems mainly from the Americans with Disabilities Act (ADA). State or local antidiscrimination or human rights laws sometimes provide even stronger civil liberties to protect against discrimination based on disability. Unfortunately, there are many matters not covered by the ADA. Even if your situation might be addressed, enforcing these rights is not always cost-effective or easy.
- People with Parkinson’s may qualify for benefits under the federal Social Security programs: either Social Security Disability Insurance (SSDI) if they held jobs through which they had contributed to the system through the payment of taxes, or Supplemental Security Income (SSI) if they did not. While vitally important for many, be mindful that the process of securing benefits can take some time — perhaps as long as several years — and may require considerable effort.
- Medicare and Medicaid, and for those eligible private healthcare insurance when offered at work, and medical leave for eligible employees under the Family and Medical Leave Act (FMLA), whether due to an employee’s own serious health condition or their need to care for a family member with a serious health condition.
In addition to rights and protections, you may have rights that are provided under various legal agreements, such as contracts.
There can be considerable overlap between the various legal arrangements that might provide you rights. The definitions, requirements and terms from one protection to the other can also be quite different. Additionally, other established contractual rights, such as pension rights, should remain in force for a person living with Parkinson’s regardless of diagnosis.
Americans with Disabilities Act
The Americans with Disabilities Act (ADA) protects against unlawful discrimination based on disability in nearly all aspects of American life.
Having or being diagnosed with an illness does not automatically entitle someone to those protections, and for those eligible for protections, the scope of their rights may be limited.
The ADA is the cornerstone civil rights law, providing equal opportunity for people with disabilities in the U.S.
The ADA offers protections in the following key areas (and establishes many other requirements):
- Employment, in companies with 15 or more employees
- Public services — programs, services and activities of state and local government
- Public accommodations and services operated by private entities, such as your lawyer’s or doctor’s office, movie theaters, restaurants and more
Below is a brief synopsis of many of the key protections that will be afforded to a person who satisfies the ADA’s definition of “disability,” along with a few limitations of those rights:
Note to Care Partners
When the ADA is triggered, it extends rights not only to the person with Parkinson’s, but also to care partners.
- When it comes to employment, the ADA specifically prohibits "excluding or otherwise denying equal jobs or benefits to a qualified individual because of the known disability of an individual with whom the qualified individual is known to have a relationship or association."
- In the marketplace, it is "discriminatory to exclude or otherwise deny equal goods, services, facilities, privileges, advantages, accommodations, or other opportunities to an individual or entity because of the known disability of an individual with whom the individual or entity is known to have a relationship or association."
Caregivers also have rights under the Family and Medical Leave Act (FMLA), which allows eligible caregivers to take up to 12 work weeks of job-protected leave to "care for the employee’s spouse, son, daughter, or parent with a serious health condition." Same-sex spouses and domestic partners should reference state laws for protection.
The Consolidated Omnibus Budget Reconciliation Act (COBRA) is a long-standing federal law that makes it mandatory that employees who work for all but the smallest employers be given the option to continue their group insurance (upon leaving the job for whatever reason) for a certain period of time — typically 18 months (29 months if you are disabled) — at the employee's expense.
The Health Insurance Portability and Accountability Act (HIPAA) provides for portability of health insurance coverage regardless of health to age 65.
Affordable Care Act
How does the Affordable Care Act (ACA) apply to people with Parkinson’s? We highlight important information about how the Affordable Care Act might impact you below.
Planning Ahead: Estate Planning
Estate planning is the process of memorializing your wishes for how you want your estate handled in the event of incapacity and upon your passing. Proper estate planning can protect you and those you care for — such as a spouse, partner, children or others — as Parkinson's progresses.
A well-drafted estate plan includes the following documents:
- Durable Power of Attorney for Healthcare, Healthcare Proxy, or Medical Power of Attorney
- Durable Financial Power of Attorney
- Will/Revocable Trust
Incapacity planning is important for everyone, not just those living with Parkinson’s. Anyone over the age of 18 should have a Healthcare Directive and a Financial Power of Attorney. The Healthcare Directive allows you to designate someone to make healthcare decisions for you in the event you are unable to make decisions for yourself. A Financial Power of Attorney allows you to designate someone to make financial decisions for you in the event you are unable. Parkinson’s progression is different for every person.
It is extremely important to have documents in place as soon as possible after a diagnosis. Your family and caregivers will thank you for providing clear direction on how to best help you in the event of incapacity.
Types of Advance Directives
Durable power of attorney (DPA) for healthcare matters or a medical power or healthcare proxy authorizes your designated attorney-in-fact, or agent, to make healthcare and life-extending or life-ending treatment decisions for you in the event that you are unable.
The document also states the directives you want that agent to follow regarding your healthcare. Given the progressive nature of PD, a guardianship designation should be included in the healthcare proxy (or a separate guardian designation prepared). Some state laws expressly permit this. But, at minimum, such a designation provides clear evidence of who the client would want to serve in such capacity if a later court proceeding were necessary to confirm a guardian. If a revocable living trust, durable power and health proxy are all completed, it may lessen the need for you to ever have to address the issue of a guardianship.
Tip: If you or your loved one have any religious beliefs that might affect medical decision making, be certain to address them in your documents.
Estate Planning & Elder Law
While most of the legal issues highlighted in this article would better be categorized as estate planning, some come under an area of law called Elder Care.
- Estate planning addresses wills, revocable trusts, powers of attorney, health proxies and related estate planning, as well as tax and other planning that might be important to you.
- Elder law focuses on planning for nursing home costs, Medicaid and Medicare, and other governmental programs.
This is important to understand so that if you are looking to protect assets from nursing home costs you want an elder law specialist, not an estate planner. If you are seeking to address the general range of documents, either specialty may be appropriate. If you are seeking to address estate tax planning, an estate planner may be preferable. Often the terminology is opaque at best so you should always describe your circumstances to the professional you wish to retain to be certain they are properly equipped to help you.
Meeting with an Attorney
When you hire an attorney to assist you with these documents, be upfront about Parkinson's challenges you may face so that you can assure the process will work optimally for you.
Micrographia, when your writing gets smaller and smaller, is a common Parkinson's symptom. Have your lawyer prepare several formal witnessed and notarized affidavits which you sign at different points during the day to document the changes in your signature. This can be helpful when trying to convince a bank teller, for example, that your signature is real even though it differs from the signature card on file.
Estate planning gives you the power to direct the distribution of your assets in the event of your incapacity, and after your death. While contemplating your own mortality can be uncomfortable, doing so can be useful to the preparation of the estate planning documents that will accomplish your goals.