One Patient's Positive Perspectives

Posts tagged ‘Americans with Disabilities Act of 1990’

Lupus and Working with ADA and FMLA

Empty Office Chair and Desk
Working with Lupus challenges every patient because it impacts the activities of daily living needed for holding a job or career.  At times, it can be downright difficult to work with lupus, when even getting up in the morning is rough.  Thanks in part to the important protections the Americans with Disabilities Act and the Family Medical Leave Act provide to U.S. citizens, it is not impossible.


Recently, we held a meeting at work for the annual discussion of my ADA accommodations.  To prepare for my employer’s annual recertification process, some work was required before the next quarterly appointment with my rheumatologist.

Forms for requesting an ADA accommodation were downloaded from my employer’s Human Resources web site, along with an FLMA Certification form.  The paperwork included a document for my signature permitting my doctor to share my private medical information with the HR department at work.  Because this was not the first year, the prior year’s accommodation and FMLA forms could be used as samples for preparing this year’s forms.

FMLA ChecklistOnce the forms were ready, next came gathering backup documents to attach to the forms:

WP_20170912_11_27_53_ProI set up a meeting with my supervisors a few days before my doctor appointment, telling them about the need to recertify FMLA and update ADA.  I gave them each a copy of the forms and the attachments we would talk about at the meeting.  This helped prepare them to be ready with anything they might want to suggest for the new year’s accommodation, or have conversations with others about the impacts of my past accommodations.

It is always a great idea for an employee to take charge of initiating any ADA/FMLA process!  It helps prevent putting the employee in a defensive position, and demonstrates the employee’s professional approach to workplace challenges related to their disability.  By taking the lead in coordinating the conversation my bosses, human resources, and my doctor before the recertification deadline, it helped me be better prepared to respond to any changes they might propose.  My bosses and the Human Resources office thanked me for making this aspect of their jobs easier.

Calendar a meetingLater, when we met to talk, my bosses both expressed how well my schedule changes and other accommodations had worked out during the past year, and readily agreed with my suggested accommodations for the next year.  I asked them if there were any problems or concerns but there were none.  The meeting gave us opportunity to talk in more depth about some of my personal and work challenges and struggles due to Lupus.  It seems this helped them better understand my commitment to my work, and how willing I am to do my part to make their accommodations of my Lupus successful.  Also, my newest boss had many general questions about Lupus that were answered, raising his awareness and understanding.

Next, at the appointment with my rheumatologist, we talked about my FMLA form, the attached job description, and the attached recent performance appraisal.   This conversation was a great way for my doctor to know more about the daily challenges of my lupus, and to help her understand more about me and how I cope with Lupus and work on a daily basis.  She had gathered enough information to help her honestly evaluate my performance and the reasonableness of my request for schedule changes.

thV6NHX9CTBefore leaving, I also gave my doctor a copy of the ADA accommodation request I was going to file with the Human Resources office, so she would also be ready when they contacted her to talk about it.  It is very important to show that an employee can do the job well with the help of an accommodation, because ADA laws do not protect employees if a reasonable accommodation is not enough to help them do the essential functions of their job.  She filled out the FMLA form after the appointment and sent it to my employer’s human resources office.

A few days later we sat down for the scheduled meeting to discuss how my intermittent FMLA leave and ADA accommodations had been working out over the past year.  We agreed to continue my schedule adjustments that allow a later start to my work and the ability to use telecommuting during flares, when needed.  They also shared positive feedback with me received from my co-workers and affirmed that they knew of no negatives resulting from my schedule modifications.  This was also a great opportunity to tell them how grateful and thankful I am to have supportive bosses who believe in me and see beyond any limitations my Lupus causes.   After the meeting, the final paperwork filed with the Human Resources office documented we had meet and conferred about my accommodations, as the ADA requires them to do, and the human resources department responded by issuing their endorsement of the arrangements.

CommunicateCommunication and cooperation between employee and employer can make all the difference!  With some footwork and planning, a Lupus patient can coordinate workplace accommodations and flexibility for facing health challenges the might otherwise threaten their job.  Sometimes, in past years, my bosses have asked me to make some changes to the accommodations, and by meeting and conferring, reached workable solutions that were better for them, while also accommodating my lupus limitations.  I am grateful, and thank God frequently for the work situation that I have been blessed to enjoy, where they follow not only the letter of the ADA and FMLA law, but the spirit of it, also.

Lupus and being healthy, wealthy and wise? Part 2

Lupus and Work, Wealth and Wisdom

going to work

False guilt about ADA work schedule accommodations?

Benjamin Franklin’s well-known words include the idea that early to bed, and early to rise can make us healthy, wealthy and wise.  He may have over-stated the value of sleep a bit when it comes to achieving results such as wealth and wisdom.  Perhaps with lupus such expectations are exceedingly high and lofty.  Most days, I awake thanking God for the ability to just get up, and go to work — at all!

Even so, I battle recurring temptations to have false guilt about the generous ADA  accommodation I receive permitting my flexible work schedule. I know in the front of my rational thought I shouldn’t feel guilty, but I still do.  The battle is mostly subconscious, but continues to bubble up into the front of my thoughts unexpectedly.  My ambiguous feelings of conflicting gratefulness and guilt simply recur, despite my efforts to reconcile them.

Many of my thoughts about lupus, and the complex and interrelated ways it affects my life are probably subconscious.  Each time I contemplate lupus, working and the demands of my schedule and life responsibilities, these wisps of thought are there too.  For a few hours after waking and sipping that first cup of morning coffee in bed, sometimes a quiet multi-level conversation arises in my mind.

This silent chatter accompanies me through my mornings, as I plod along through a daily ritual of summoning body, reflexes and cognitive thought back into a reasonably functional state.  Often the flow of subconscious thoughts about lupus – its blessings and battles – gurgle up through my focused, conscious thoughts to become part of my audible conversations, poetry and prayers.

Perhaps, other patients talk to themselves, too, with thoughts similar to a few of my own ramblings…

A few indulgences, with moderation!

Got to get ready for work!

Conscious: I’ve got to get ready for work.

Subconscious:  More coffee!  My mind is really foggy this morning. Don’t forget to take medications. Get them now, don’t procrastinate!  I’d better stay home until my brain clears up some more!  What if it won’t clear up soon enough?  I’ll be really late again!  Maybe I will have to miss the whole day this time.  Is it too soon to drive safely?  Toughen up, girl, just get going!  Remember, early to bed and early to rise!  Yeah, right!

How do other people get going so early? What would it feel like to wake up clear-headed?  It hurts to think through this murky brain of mine.  Pull it together! I’ve got to find some clothes to lay out before my shower.  I hate being late!  It would feel good to be early today and surprise everyone.  Quit that wishful thinking, girl, and get to exercising!  Focus now, come on, I’ve got to get going.  I don’t want to be late today!  Lord, please help me be on time today!

Conscious:  I am so grateful for my ADA accommodation letting me start work at mid-morning.
Grateful for the ADA

Grateful for the ADA

Subconscious:  What would I do without this schedule?  I know, ADA’s the law.  They are supposed to accommodate me.  But they do it willingly.  I am so glad!  If it wasn’t the law, would my employer want to give me this schedule accommodation?  Maybe not!  Maybe so!  What would I do if I had a different job?  Would any other bosses really work with me around my lupus?  I’m not so sure they would.  Would they give me a hard time?  I would hope not.

What if I changed jobs, would the new employer give me the same accommodation?  What if I had to try going to work as early as “normal” people do?  Could I hide my brain fog?  What if they wanted me to go to morning meetings and talk intelligently?  Quit worrying about “what ifs”!  I have to trust the Lord he has given me this job.

I wonder if anyone knows that Monday morning status meetings were a big reason I left my last job?  I never want to be forced to interact with “morning people” under stress like that again!  Did they really expect people to remember all those details on Monday mornings?  Those morning case status meetings were painful!

Could I drive to work safely every day if I had to leave early?  No way, that would be dangerous!  Would I be liable if I caused an accident because of brain fog?  Isn’t brain fog considered impairment?  Brain fog wouldn’t be a good excuse for causing an accident.  Could I do it if I had to?  Maybe!  Every day? Probably not!  That would be extremely difficult!

I can do whatever God calls me to do!  Lord, help me focus on today, and not worry about tomorrow.

Conscious:  I feel uncomfortable walking in so late every morning, compared to everyone else.
Lupus, and driving on through the fog of impairment

commuting later

Subconscious:  What do people think about why I arrive at work later than they do?  I wish I could think clearer in the mornings!  Do they think I am just lazy?  I hope not.  It must feel like I am getting special treatment.  I hope no one resents it!  I wonder if my co-workers understand how rough mornings are for me because of lupus?  Maybe they think I am slacking off and just want to sleep in.  Does my boss get grief about my schedule? I hope not.  Do co-workers or my subordinates complain?  I’m sure some of them do.

I know the ADA says to accommodate my lupus. I hope they aren’t getting tired of it.  Am I really worth the bother to them? I hope so!  Is it a pain for my assistant to set meetings around my special schedule? It must be hard to work around my mornings. Does my schedule erode my coworkers’ respect for me?  What does my assistant really think about it?  It must take great patience sometimes.  I need to make sure I show how grateful I am.

Am I feeling a little guilty?  Yeah, probably.  Wait, why am I feeling guilty?  Cut out the false guilt, and stand up straight!  Where is my poise and confidence?  Thank God for His goodness regarding this job!  I know I take a “hit” for not being here early.  It is hard to supervise people when I am not here yet.  Put on your brave face.  Walk in with confidence.  Don’t let them see your fear.  I have to exercise faith.  Lord, help me trust you. I don’t want to fail because of my limitations.  Lord, help me handle my responsibilities well today!


morning exercise and prayer

Most mornings, I strive to prepare physically and spiritually before venturing out.  The persistent mental chatter is quieted by gentle exercise and a few minutes of quiet, perspective-setting bible reading and prayer.  This helps turn my focus upward, outward, forward and optimistic.  Coping with lupus for me means getting my thoughts disciplined to look at others, and to get my mind off myself.  This helps me shift my attention from how I feel physically, to give attention to the needs and responsibilities I have toward others.

A thoughtful beginning to my day helps me cope better with my daily challenges, and perhaps helps me gain a drop more wisdom to apply to the adventures ahead.

Daily mercy, grace & wisdom

While early to bed and early to rise may make me healthier, I believe God is the One who graciously helps me be equipped to work, make a living and lets me borrow his wisdom along the way.  Unlike Mr. Franklin, I am simply not convinced that good sleep habits alone will give me that!

Daily, my need for God’s mercy, grace, wisdom, help and strength loom great.  His ample supply flows abundantly to my aid.

Biblical perspectives I like to ponder

biblical perspectives

Biblical perspectives

Nehemiah 8:10 “For this day is holy unto our Lord: neither be ye sorry; for the joy of the Lord is your strength.”

Psalm 118:24 “This is the day which the Lord hath made; we will rejoice and be glad in it.”

Proverbs 24:33-34  “Yet a little sleep, a little slumber, a little folding of the hands to sleep: So shall thy poverty come as one that travelleth; and thy want as an armed man.”

2 Timothy 1:7 “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.”

James 1:5  “If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him.”

Lupus and the best of the red, white and blue!

Today, we celebrate freedom!

Today, in the United States of America we are celebrating a national holiday, the anniversary of the declaration of our independence as a nation.  Our exceptional country, founded as a nation that protects personal freedom and liberty for all citizens.  I am, without excuse or apology, both a lupus patient and a patriot!  As a lupus patient, I also celebrate and thank God for many things in our country that impact lupus patients positively.

Many things together have helped make our country the most favorable place in the world to live as a lupus patient, and these all contribute greatly to the health and quality of treatment of people with chronic illnesses, such as lupus:

Best of the red, white and blue!

  • Available medical care from the best system of well-trained doctors in the world
  • Liberty to choose which doctor I will visit and choice to see any doctor on my health insurance plan, or to pay extra if I can afford it to see another doctor or specialist of my choosing
  • Protection from discrimination due to illness or disability, protection for my medical privacy, and protection of my job when lupus interrupts my ability to work through laws like the Family Medical Leave Act, the Americans with Disabilities Act and the Health Care Insurance Information and Portability Act
  • Drug companies that offer programs to pay the co-pays and drug costs for patients that need help
  • Bankruptcy laws that protect me from financial slavery in the event I cannot pay unexpectedly huge medical or other bills
  • Social Security and Medical Care funded by other taxpayers for persons who are unable to work because of disability
  • Open access to public libraries and internet medical information sites provided free of charge
  • Attorneys in our legal system that aid patients with navigating the disability application process, and are paid only if and when they help secure a patient’s benefits
  • Lawyer’s professional ethics requirements that they donate a certain percentage of their work to people who cannot pay for their services, such as underemployed or unemployed lupus patients or others with limited resources
  • Special parking laws, placards and plates that give close access to buildings for disabled persons and require wheelchair access everywhere
  • Communities all over our country that fund no-cost or reduced-cost transportation for disabled citizens
  • Major retail corporations and pharmacies that willingly offer lists of hundreds of common medications at low ($4 to $5) costs
  • Tax exempt status for non-profit organizations such as The Lupus Foundation of America, and its many local chapters that support lupus patients, lupus research and support services and for lupus patients, by encouraging benevolent tax-free giving by citizens and corporations
  • Federal and state tax laws that give deductions for high medical treatment and transportation costs

Celebrating our precious freedom to vote,
and to exercise our will as a people!

And lastly, I celebrate the wisdom of the voters in all of our great states, who watch the ongoing decisions of their elected representatives.

We cast our ballots in local and national elections and exercise our liberty to check any failure to represent our wishes.

We have the recurring ability as voters to correct any dangerous or uneven balances of power that could harm our freedom or well-being as citizens of this great nation.

God bless the adventure of freedom in our great nation!

God Bless America!

Prognosis and Hope: Lupus Fact #30 – Working with lupus and ADA accomodations

Prognosis and Hope: Most people with lupus are able to continue to work. However, some may need changes to their work environment and schedules, such as flexible work hours, job-sharing, and telecommuting.  My lupus has affected my professional life, and required some major accommodations the help me to work under the Americans with Disabilities Act (ADA.)

I won’t kid you, it takes work!

A good ADA accommodation takes some work!

I won’t try to kid you or say that working out a successful ADA accommodation is easy, but agreeing on one that works for you and your employer can mean being able to keep working with your lupus and keeping your career or job.  I can be tough enough to figure out that you may even need to ask an advocate or attorney to help you, especially if you are struggling with CNS involvement like I was when I formally first requested ADA accommodation.

The ADA prohibits disability discrimination

What is the ADA?

The ADA is a federal law first passed by congress in 1990, that prohibits discrimination against people with disabilities such as lupus in employment, transportation, public accommodation, communications, and governmental activities.  Unfortunately, every lupus patient does not have the same success finding an employment situation with accommodations right for their lupus.

Lupus awareness is critical for employers understanding their workplace responsibilities under the ADA and their employees’ rights for reasonable ADA accommodation.  The employee has to ask for and suggest a reasonable accommodation, usually in writing.  Under the ADA, several criteria about the employee and their disability must first be met.  The  ADA requirements were recently updated by congress in 2008 so they are now even more favorable to employees, and the Equal Employment Opportunity Commission (EEOC) passed a series of regulations in 2009 and 2011 to carry out job related parts of the Americans With Disabilities Act Amendments Act.

Requesting ADA Accommodation at Work

Sample ADA Accommodation Request Form

My employer gave me a form to fill out to request an ADA accommodation that I used to start the process.  On the form I told how my lupus met the legal requirements that made me covered by the ADA, and then I suggested some reasonable  accommodations that would help me keep my job and be able to do my work.  I attached a detailed brochure “What is Lupus” from the Lupus Foundation of America and a narrative letter from my rheumatologist that explained my limitations and supported the accommodations I requested.  I also included some printed information about Lupus from the U.S. Department of Labor Job Accommodation Network web site that I will talk more about below.

Employer and employee talk to agree upon reasonable accommodation

Finally, conversation between the employer and employee helps them reach agreement about reasonable accommodations.  My supervisors and I agreed to change my work schedule to allow me to arrive later in the morning and leave later in the evening to accommodate my lupus symptoms that are most disabling in the early morning hours, and for me to work when I am the sharpest mentally.  Also, we agreed that on days my lupus was in severe flare, I could telecommute and work from home when permitted by my work responsibilities.

ADA Accommodation in a Successful Career

I have been successful keeping my thirty year career in law, first as a paralegal and then as a government law department administrator for the past 22 years.  Because of continuing to work, I am not a burden on the social security system, and am able to get and pay for my own medical care through my group insurance program.  I am now qualified for a local government pension and will be able to work the rest of a full career to my normal retirement age, because of the support of my bosses and their implementation of the ADA accommodations I needed.

The ADA accommodation clearly helps me, but it also protects my supervisors from being accused of being unfair to other employees by making special scheduling or telecommuting arrangements for me.  Others at work cannot really say they are being unfair, or inequitable, since the idea of workplace equity does not apply the same to employees covered by the ADA, who are not similarly situated to other healthy employees.  My ADA accommodation formally places me into a protected status given by the ADA, that acknowledges I am working under a different situation than most others in my office.

The Technical Assistance Manual: Title I of the ADA provides this important information:

Who is protected by the ADA?

Who Is Protected by Title I of the ADA?

“The ADA prohibits employment discrimination against ‘qualified individuals with disabilities.’ A qualified individual with a disability is:  An individual with a disability who meets the skill, experience, education, and other job-related requirements of a position held or desired, and who, with or without reasonable accommodation, can perform the essential functions of a job.

To understand who is and who is not protected by the ADA, it is first necessary to understand the Act’s definition of an “individual with a disability” and then determine if the individual meets the Act’s definition of a “qualified individual with a disability.”

Meeting the ADA Requirements

The Definition of a Disability

The ADA definition of person with a disability is very specific, and changed by Congress in 2009. A person with a “disability” is an individual who:

  • has a physical or mental impairment that substantially limits one or more of his/her major life activities;
  • has a record of such an impairment; or
  • is regarded as having such an impairment.

Help and Free JAN Consultation

This site is a wealth of information!

The Job Accommodation Network (JAN) is a free consulting service that provides information about job accommodations, the Americans with Disabilities Act (ADA), and ability of people with disabilities to get and keep their jobs.

Job Accommodation Network – West Virginia University
PO Box 6080 Morgantown, WV 26506-6080 — Toll Free: (800)526-7234 — TTY: (877)781-9403 — Fax: (304)293-5407 —

Finding suggestions for reasonable lupus accommodations

Links to Suggested Reasonable Accommodations for Lupus

JAN  has these great resources for learning more about reasonable accommodations for lupus (check out all the live links below):

  1. Accommodation and Compliance Series: Employees with Lupus, By Linda Carter Batiste, J.D.
  2. Searchable Online Accommodation Resource(SOAR) – Step 2: Select a lupus limitation to follow one of these links to more information:
    1. Individual has difficulty with activities of daily living.
    2. Individual has cognitive limitations.
    3. Individual is sensitive to extreme temperatures (including Raynaud’s Phenomenon).
    4. Individual has gross motor limitations.
    5. Individual experiences fatigue and weakness.
    6. Individual experiences migraine headaches.
    7. Individual has photo-sensitivity.
    8. Individual has a vision impairment.
  3. Effective Accommodation Practices Series: Lupus – Job Accommodations for People with Lupus – a downloadable MS Word format document.
  4. Lupus Organizations
  5. Accommodation Ideas By Occupation or Industry
  6. Information by Product or Service

There is a lot to read at the ADA website, but it is worth the trouble to learn about what you can do to claim your rights under the law.

If you are unsure where to start, JAN offers help and consultation  for people or their advocates.  If you contact JAN for advice, you should expect these typical questions:

  • What is your disability or limitation?
  • Are you now employed or seeking information about employment or self-employment?
  • Do you feel that you are being discriminated against because of your disability?
  • Do you want to know your rights under the ADA and how to file a complaint?

Questions go to one of JAN’s professional consultants experienced in the field of rehabilitation.

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