Parkinson’s Accommodations and Disability

This post describes ways you can manage practical details of your working life while living with Parkinson’s, including some ways you might change your work duties or even stop working if Parkinson’s causes you to be unable to do your job.

This topic often has a large emotional impact, because many people care deeply about their work. For some people, their work is even involved in their sense of who they are. While this post focuses on practical advice about transitions in your work life, we know that the emotional and other personal aspects of this topic are also important.

We have discussed these elements during our Living With Parkinson’s Meetup and on The Parkinson’s Podcast. Also, many of our Ambassadors have experience navigating the emotions and other personal impacts associated with changes in their ability to work. Please search our Ambassador list and reach out for support if you think you’d benefit from a personal connection about these topics.

PARKINSON’S MAY IMPACT YOUR WORK IN MANY WAYS 

If you live with Parkinson’s and you are still working, the impacts Parkinson’s has on your work will be unique. That said, there are certain experiences and symptoms that come up often when discussing Parkinson’s in the workplace. For example:

• Bradykinesia can make tasks that involve fine motor control difficult—this can include manual labor, typing, filing papers, writing, and many other tasks. 

• Rigidity can cause discomfort and pain, along with difficulty in performing tasks that require flexibility or frequent movement. 

• Fatigue can manifest as overwhelming tiredness and can make it challenging to complete (or even begin) almost any task.  

• Cognitive symptoms can make it difficult to concentrate, make decisions, solve problems, follow complex instructions, and stay organized. 

• Common mood-related symptoms like depression, anxiety, and apathy can make it hard to stay motivated and engaged in your work.  

• Challenges related to balance can be especially impactful for people with Parkinson’s whose work requires long or frequent periods of walking or standing. 

• Speech and voice impairments can make communication difficult. 

• Autonomic symptoms of Parkinson’s, including digestive issues, bladder issues, and/or orthostatic hypotension, can affect not only your quality of life, but also your ability to perform your work.  

LEGAL PROTECTIONS 

American’s with Disabilities Act

In the United States, the Americans with Disabilities Act (ADA) protects people with disabilities from discrimination. Under the ADA, a person is considered to have a disability if they have a physical or mental impairment that substantially limits one or more major life activities. Like many people with Parkinson’s, you may not consider yourself disabled, but you may still fall into the legal category according to the ADA’s definition.

The ADA prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools and transportation. A comprehensive review of the law is available here, but the most important thing for you to know is that the ADA requires employers to provide “reasonable accommodations” to qualified employees that allow them to do their job without causing “undue hardship” to the employer. 

Examples of possible reasonable accommodations include: 

• Assistive Technology or devices 

• Modified Break Structure 

• Modified Job Duties 

• Remote Work 

• Cognitive accommodations like written instructions or reminders for tasks.

Disclosure and the ADA 

You do not have to disclose your diagnosis at work unless you are requesting accommodations under the ADA. Even then you have a right to privacy, and you are not required to go into detail about your condition. You only need to explain how your condition affects your ability to perform the essential functions of your job.  

Under the ADA, employers are required to engage in an interactive process with employees requesting reasonable accommodations. This process involves discussing your needs, the needs of the company, exploring potential accommodations, and finding solutions that allow you to perform your job effectively.  

Once you have discussed accommodations with your employer, it’s a good idea to confirm the agreements in writing. This can be helpful for both you and your employer in ensuring that the accommodations are implemented properly. 

DISCUSSING YOUR DIAGNOSIS WITH YOUR EMPLOYER AND CO-WORKERS

Some people with Parkinson’s delay sharing their diagnosis with their employer and others in their lives. Reasons for this include worries about job security, concerns about retribution or alienation, and not wanting to be seen differently.  

At the same time, many others—including many of our ambassadors—advocate for sharing a Parkinson’s diagnosis. Often this is because they found strong support networks within their companies and other communities, but the decision about when (or if) you tell your employer about your Parkinson’s diagnosis is yours to make.   

Many experts and people who have navigated the process of requesting accommodations or pursuing the disability coverage options described below suggest that people with Parkinson’s talk with an employment lawyer or other specialist before disclosing their diagnosis at work. An employment lawyer can help you understand your legal rights and develop a proactive plan. In the United States, each state differs in their legal processes, so you will need to find an attorney who specializes in employment law in your state.  

Family Medical Leave Act

Another resource to explore if you live and work in the US is the Family Medical Leave Act (FMLA). This law allows for 12 weeks of unpaid leave for medical-related purposes. Because the time off can be used on an intermittent basis, even hourly, it can provide a flexible option for days when you just need to stay home and rest or when longer time off may be required. 

Eligibility for FMLA-related leaves of absence depends on multiple factors, including how long you’ve been employed. Work location may also be a factor, so it is a good idea to read details your employer can provide or to consult a legal advisor.  

In many places, public libraries and other locally run organizations provide free basic consultation services. We’ll highlight a list of people who can advise on this and other work-related issues later in this post. 

MORE ABOUT ACCOMmODATIONS 

Workplace accommodations are intended to help you continue to remain in your job while also managing your symptoms and remaining safe. What accommodations you need will vary depending on your symptoms and the nature of your job. It’s important to note that you may never need accommodations to perform your job and if you do need to seek accommodations, you might only need minor adjustments.   

However, if you are experiencing symptoms that affect your work, there are many reasonable accommodations that you and your employer could agree upon. While the list below is not comprehensive, examples of possible accommodations include:  

Changing your devices and workspace

Many devices and technologies are well-suited for people with Parkinson’s. For example, ergonomic workstations or small sets of pedals you can use under your desk allow you to move more frequently throughout the day. Voice-recognition software can help alleviate difficulties with typing or writing by hand, which can be especially challenging if you experience tremor, bradykinesia, and/or dyskinesia.  

Building a flexible work schedule

It may be possible for you to collaborate with your supervisor to arrange your work schedule around times of day when you can be most productive. If you do your best work in the morning, for example, you could strive to complete your most important projects before noon and reserve your afternoons for less strenuous projects. 

Modifying your break schedule

Use your breaks during work to address the symptoms you’re experiencing. This may mean stretching or taking a quick walk, enjoying a short nap, or taking a few minutes to seek quiet for a mindfulness exercise.  

Exploring assistive options

Depending on the nature of your work and your symptoms, you can explore assistive devices such as walking aids (e.g., cane, walker, scooter, or wheelchair), voice-to-text software, anti-slip mats, or chairs with adjustable arms to help you stand and sit more easily. 

Altering the timing of tasks and instructions

Many people with Parkinson’s experience cognitive impacts of Parkinson’s that make it harder to focus on multiple projects at once. Your employer may be able to assign tasks on an alternative schedule or by providing distinct instructions in writing for the tasks you are assigned. These accommodations may help you to focus and complete tasks more efficiently. 

TYPES OF DISABILITY Coverage/BENEFITS 

If you live in the US and are unable to work due to impacts from Parkinson’s, you may be eligible for disability benefits to help you meet your needs.  

Examples of disability benefits in the United States include short- or long-term disability insurance provided through your employer; the governmental program Social Security Disability Insurance (SSDI); and Supplemental Security Income (SSI), which is a program that provides financial support depending on your financial circumstances.  

Depending on where you live, there may be additional state or local programs to assist with disability benefits or services. 

Employer-provided Disability Benefits

Employer-provided disability benefits are part of the compensation package at some companies. These plans provide financial support and security to employees who are temporarily or permanently unable to work due to illness, injury, or other medical conditions.  

Typically, employers offer two types of disability benefits, short-term disability and long-term disability. Employees who intend to claim these benefits generally must submit medical documentation that verifies the condition and explains how it impacts their ability to work. 

Short-Term Disability

Short-term disability benefits are designed to cover temporary conditions that prevent an employee from working for a limited time, and which are expected to improve with time. Common reasons for claiming short-term disability include surgery, childbirth recovery, or injuries that require a medical leave of absence from work.  

Long-Term Disability

Long-term disability benefits provide income replacement for an extended period, usually for employees who are unable to work for a prolonged or permanent period due to serious medical conditions. Unlike short-term disability, long-term disability can last from several months up to retirement age or until the employee is able to return to work. 

Employer-provided disability plan requirements and benefits vary depending on the employer. Typically, however, to qualify for these kinds of benefits employees must have worked for the company for a certain period before they become eligible for disability benefits.  

It is important to note that most employer-provided disability plans only replace a portion of your income, which may not be enough to cover all your expenses. Also, you may be able to purchase private disability coverage independently. Be sure to read plan documentation carefully before you purchase one of these plans, and pay close attention to medical exam requirements and look-back periods.  

Social Security Disability Insurance (SSDI) 

SSDI provides benefits to individuals who have worked and paid Social Security taxes but are no longer able to work due to a disability. You may qualify for SSDI benefits if Parkinson’s significantly limits your ability to perform your job duties.  

To be eligible for SSDI, you must have worked and paid Social Security taxes for a certain number of years. Exact details depend on multiple factors, including the age at which you apply for SSDI coverage. Your disability must be expected to last at least 12 months or result in death, and your Parkinson’s symptoms must be severe enough to meet Social Security’s definition of disability. 

The Social Security Administration (SSA) has a listing of impairments that qualify for disability, which includes Parkinson’s. To qualify, the SSA looks for: 

• Motor and sensory dysfunction, which may include tremors, rigidity, and problems with coordination. 

• Mobility and dexterity challenges, like impacts to your ability to walk, use your hands, or perform other physical tasks. 

• Cognitive impairment, including impacts to your memory, concentration, or other cognitive functions. 

The SSA will also consider if your Parkinson’s symptoms meet the criteria for Parkinsonian syndrome or advanced Parkinson’s. In many cases, people with Parkinson’s who do not meet these criteria directly may still be approved for SSDI if their symptoms are severe enough to prevent them from working. 

APPLYING FOR SSDI 

You can apply for SSDI online through the SSA website, by phone, or in person by visiting your local SSA office.  

Because the SSDI application process can be complex, it can be beneficial to work with an attorney or social worker who specializes in Social Security disability claims. In some places, there are regulations that define when and how a disability representative receives compensation.  

There are also often limits to how much these representatives can receive from you. Also, some attorneys and other representatives do not accept payment unless your claim is approved. 

For documentation, you will need to provide: 

Detailed Medical Records

This includes documentation from your physician(s) regarding your diagnosis, symptoms, medications and other therapies, and how Parkinson’s impacts your daily life and ability to work. You can include records from more than one provider (such as your primary care doctor, your neurologist, and any other specialists you visit). You can also include lab results and treatment plans that show the severity of your condition.  

Documentation of Functional Limitations

This kind of documentation that highlights how Parkinson’s impacts activities of daily living such as walking, sitting, standing, writing, or using your hands, is also important to include. Notes from a physical therapist or occupational therapist may be helpful.

Work History

You will also need to show your work history and Social Security contributions. 

The approval process for SSDI can take several months or longer, and many initial claims are denied. If your claim is denied, you have the right to appeal. Having a well-documented medical history can help in the appeals process if your claim is denied.  

Supplemental Security Income (SSI)

SSI is a needs-based program in the US for individuals with limited income and resources. It is available to people with disabilities (including Parkinson’s), but eligibility depends on your financial situation.  

To be eligible for SSI, you must meet the definition of disabled as defined by the SSA and your disability must prevent you from working. You must also meet the certain financial criteria, including some related to amount of savings and other financial resources.  

You can apply for SSI online through the SSA website, by phone, or in person by visiting your local SSA office. For documentation, you will need to provide a confirmed diagnosis of Parkinson’s, medical records (like those listed above for SSDI applications), and a list of functional limitations (like those listed for SSDI applications). 

FINDING MORE HELP 

An important aspect of navigating the difficulties of managing your Parkinson’s symptoms and a career is having a support system. In addition to your regular care team, you may want to seek out one or more of these experts:  

Employment attorney

An employment attorney specializes in legal matters related to the workplace and employee rights. They can advise on various aspects of employment law, including requests for accommodations and disability applications. 

Disability-focused Organizations

There are numerous organizations dedicated to helping people living with disabilities. One that has been highly recommended by several members of the Davis Phinney Foundation community is the Job Accommodation Network (JAN).  

Amy Montemarano, a DPF Ambassador who worked as a law professor for eight years after her Parkinson’s diagnosis at age 48, reached out to JAN when she was looking for advice about working with Parkinson’s. Amy’s describes her experience by saying, “These guys were the real deal. I called them and they gave me advice about my situation that was more helpful than any lawyer could have provided at that point in the process. And it’s free! If I were in a position of thinking about asking for accommodations at work, I would definitely call JAN first.” 

Social Worker or Advocate

Social workers and advocates for people living with disabilities can help guide you through the process of applying for disability benefits. They can explain the application process, help you gather the necessary paperwork, connect with your healthcare providers for documentation, and more. They may also be able to help you find other community services or organizations that help with filing for disability.   

Medicare/Medicaid Expert

If you need assistance exploring Medicare and/or Medicaid options in addition or instead of SSDI or SSI, it can be helpful to seek out a Medicaid or Medicare expert, who can offer guidance navigating these programs’ complex eligibility requirements, benefits, and application processes. 

Financial advisor

Although they typically don’t specialize in disability benefits, trained financial counselors can advise you about proactive strategies that can help reduce confusion and enhance your financial peace of mind as you navigate career changes. 

OTHER SOURCES OF SUPPORT IN YOUR COMMUNITY

Remember that many people with Parkinson’s have navigated these challenging workplace issues and can offer invaluable tips. Ask members of your local support group for advice, or connect with a Davis Phinney Foundation Ambassador who has experience in these areas.  

Also, take advantage of employee support lines that your employer may provide access to. These are typically confidential, and they are often available at no charge. If you have a therapist, they can also be a big source of support. While your work experience may not be highest on your list of topics with your therapist, that doesn’t mean the topic is off limits.

Remember, too, that the total impact of your work life and how it intersects with Parkinson’s is important. It’s also complicated, and it is OK to ask for and accept help, whether that’s in the form of accommodations, financial assistance, or anything else. As always, recognizing your challenges and needs and accepting the help available to you is critical to living well with Parkinson’s, both in the workplace and out. 

Additional Resources

JAN Article on Parkinson’s  
Expert Advice on Workplace Issues  
[Webinar Recording] YOPD Council: Disability, Insurance, and Parkinson’s 
State-Specific Medicaid Eligibility Requirements 
Government Insurance Programs 
Can I Get Disability Benefits Now That I Have Parkinson’s?  
How to Work Full Time & Live Well with Parkinson’s 
Working Full-Time with Young Onset Parkinson’s  
Job Accommodation Network – Parkinson’s  
How to Share Your Parkinson’s Diagnosis with Family, Friends, and Co-workers