When Should I Tell My Employer About My Condition?

One of the most difficult decisions I ever made was to advise my boss that I had Kennedy’s Disease. Pride, fear and the other unknowns kept me from disclosing my condition for far too long. Yet, after I told him, I discovered he was understanding and supportive of my condition and situation. Several accommodations were made that allowed me to work safely productively for several more years.

I don’t believe there is ever the “right time” to have the discussion because there are too many unknowns. But, when you begin to see possible job performance or safety issues involved, it is probably time to step up. As the article states, disclosing your condition is a matter of personal choice.

The MDA’s QuestMagazine has an article written by Karen Henry about disclosing your disability to your employer. A portion of the article is shown below. To read the entire article, click on the MDA Quest link above.

“…Talking with employers about neuromuscular disease can be challenging. Given the broad spectrum of neuromuscular diseases and their often unpredictable nature, some may find it difficult to navigate exactly when and how much to disclose. 

“The very first thing a person needs to consider is why you want to disclose,” says Sharon Rennert, senior attorney advisor at the U.S. Equal Employment Opportunity Commission (EEOC). Doing so for the right reason at the right time keeps the focus on your performance as an employee, rather than on your disability…”

“…Ultimately, disclosing information about your disability to your employer is a personal choice. Choosing not to disclose your disability might be the most appropriate choice if you are able to perform all your essential job functions without extra assistance. However, if your disability begins to impact your job performance, you could be held accountable for performance issues if you have not disclosed your disability and asked for reasonable accommodations.

“Even if you’re not quite sure what accommodations might help you, it is better to get the ball rolling,” Rennert says. “The last thing anybody wants is for there to be disciplinary action based on poor performance.”

Miller agrees. “It’s OK to let people around you know what you’re going through. It’s OK to take accommodations that are necessary for your disability…”

“…Title I of the Americans with Disabilities Act (ADA) of 1990 prohibits private employers, state and local governments, employment agencies and labor unions from discriminating against qualified employees with disabilities. They also must make reasonable accommodations employees with disabilities need to perform their jobs.

According to the U.S. Equal Employment Opportunity Commission (EEOC), a reasonable accommodation is any change in the workplace or the way things are customarily done that provides an equal employment opportunity to an individual with a disability. “The types of accommodations an employer could provide are quite broad,” says Sharon Rennert, senior attorney advisor at the EEOC…”

Living with a Disability

Reading the NewYork Times article, “Becoming Disabled,” stirred some emotions. I felt the writer, Rosemarie Garland-Thomson, did a fine job of crossing the boundaries of what it means to be disabled as well as what is a disability. So many of us living with a disability, like a progressive motor neuron disease, have had to face the realization, often far too soon in life, that we are now different. Initially, we find it to be a lonely world out there. Fortunately, with the right support, we emerge from the tunnel and discover there is life after disability.

Below is an excerpt from the Times article. I hope you enjoy it.

BecomingDisabled

Roughly one in five Americans lives with a
disability. So where is our pride movement?

“… The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.

The World Health Organization defines disability as an umbrella term that encompasses impairments, activity limitations and participation restrictions that reflect the complex interaction between “features of a person’s body and features of the society in which he or she lives.” The Americans with Disabilities Act tells us that disability is “a physical or mental impairment that substantially limits one or more major life activities.”

Obviously, this category is broad and constantly shifting, so exact statistics are hard to come by, but the data from our most reliable sources is surprising. The Centers for Disease Control and Prevention estimates that one in five adults in the United States is living with a disability. The National Organization on Disability says there are 56 million disabled people. Indeed, people with disabilities are the largest minority group in the United States, and as new disability categories such as neurodiversity, psychiatric disabilities, disabilities of aging and learning disabilities emerge and grow, so does that percentage.”

“… Still, most Americans don’t know how to be disabled. Few of us can imagine living with a disability or using the technologies that disabled people often need. Since most of us are not born into disability but enter into it as we travel through life, we don’t get acculturated the way most of us do in our race or gender. Yet disability, like any challenge or limitation, is fundamental to being human — a part of every life. Clearly, the border between “us” and “them” is fragile. We just might be better off preparing for disability than fleeing from it.”

“… Becoming disabled demands learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become nondisabled. It also demands the awareness and cooperation of others who don’t experience these challenges. Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.”

Photo:  http://www.telegraph.co.uk/travel/travelviews/

ADA Turns 25

The MDA Advocacy News sent out the following:

As the ADA turns 25...

On July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law, marking an important step forward for individuals with disabilities and their families.  The legislation elevated the importance of equal access for children and adults with disabilities and engaged the country in a conversation about the inherent rights every person has, regardless of ability.  The ADA changed the landscape for people with disabilities—it is the primary reason we have accessible parking spaces and building entrances and why those of us with limited mobility can navigate school campuses and access and enjoy public libraries, retail stores, movie theaters and doctors' offices. 

As the ADA turns 25, we come together to celebrate the accomplishments of this legislation while maintaining our focus on continued, collective efforts to protect and enhance the rights of our disability community, where there is still much work to be done.

_________________________________

Being an 'old-timer', I find it difficult to believe that it was only 25 years ago that things started to change for those living with a disability. I still become frustrated when I do not have access to certain buildings or a handicap bathroom is nothing more than two grab bars attached to a normal toilet. Yet, I am thankful for all the changes that have been made to allow me access to facilities including designated parking areas. Probably the biggest change is the mindset of the majority of people. Thank you ADA.

For more information on the ADA, visit:  http://www.ada.gov/

“Handicap Accessible” doesn’t always mean accessible

Traveling safely and comfortably are two of the more difficult problems associated with Kennedy’s Disease as it progresses.  For me. I had to retire early because travel became out of the question and my job required a lot of travel.

One thing I found out early on was that many hotels believe a couple of grab bars in the bathroom makes the room “handicap accessible.”  Of course, I wasn’t savvy enough to ask the right questions either.  What I now know is:

• It is important to find out exactly what the hotel deems accessible.
• And, for you to explain what your needs are.

There is a good article at “Disaboom” written by Candy Harrington that a friend sent to me the other day.  “Finding an Accessible Room Beyond ADA Compliance” provides a couple of dozen bullet points about what to look for, what to ask, and who to ask.  I recommend that you print the article and refer to it whenever you are considering any travel.

Some Recommendations

I have listed below some of the recommendations mentioned in the article (and some of my comments):

• Never just ask for an “accessible room.” Instead, list the access features you need.  (i.e., a roll in shower if tubs are no longer safe to step in and out of or an elevated toilet seat)
• In the U.S., look for hotels constructed after 1992, the date the Americans with Disabilities Act (ADA) took effect.
• Always call the hotel directly. On-site reservation agents often have first-hand knowledge about access features at their property.   (if you feel the front desk person does not know the answer, ask for the manager)
• Ask the reservation agent to describe the access features of the room. Don’t settle for the broad description of “ADA Compliant.” Ask for specific access details.

 

• Many properties have raised toilet seats that can be installed in any bathroom. Accessible toilets are 17-19 inches high, so if you need a higher one, ask about a raised toilet seat.  (or, do as I do and bring a seat riser with you … “tallette”)

• Don’t be afraid to ask for measurements. If door width is a concern, ask for that measurement. Don't forget about interior (bathroom) door width, too.
• If walking any distance is a factor, request a room near the elevator.
• Remember to ask the reservation agent if the accessible room can be blocked for you. If the answer is “no” or “usually,” then find another hotel.
• Bed height is not regulated under the ADA, so make sure to ask for bed measurements. Many properties are replacing their standard mattresses with high pillow-top models.

Travel doesn’t have to be a hardship if you plan ahead and ask the right questions.  Have a good trip!

A webinar worth attending

Occasionally I receive an email or announcement that is better than article I could write for the day.  Yesterday morning was such a case.  The subject of the MDA webinar is one near and dear to my heart.  I would recommend that if you have the opportunity, attend the session.

Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You

MDA is proud to offer an expert-hosted public webinar series for the MDA community. This installment, “Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You,” will be hosted by Robyn Powell, disability rights program manager with the Equal Rights Center. Please join us as we discuss the resources, challenges and successes regarding these issues and the laws that protect individuals with a disability.

Topic: Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You
Date and Time: April 26, 2011, 4 p.m. Eastern Daylight Time; 2 p.m. MDT; 1 p.m. PDT
Event password: advocacy1
Event address for attendees: https://mdaevents1.webex.com/mdaevents1/onstage/g.php?d=666443449&t=a

Interested individuals will need to pre-register to attend this session. To do so simply:

1. Click on the event link above.
   
2. On the events page, scroll down and click on the “register” button.
   
3. On the registration page, enter the registration password and click “submit.” For this session, the registration password is advocacy1.
   
4. You will be taken to a page where you will be asked to enter your name, email address and mailing address, and click “submit.” An automatic email will be generated and sent directly to you.

If you have questions about signing in and/or registration, please contact Alicia King at (202) 828-8560.

Note: Due to the large volume of callers and the amount of background noise associated with these calls, the lines will be muted during the presentation. We highly encourage you to submit your discussion-related questions in advance to advocacy@mdausa.org. They will be submitted directly to Ms. Powell and addressed in her presentation.


As any of my regular readers know, I have written several articles about the ADA and your rights under the ADA.  I feel it is in the best interest of all of us, whether disabled or not, to understand the rights of a disabled person.   

A Sensitive Subject

Public Restrooms – "Can't live without them and can't live with them."

Last Saturday's KDA chat room was interesting. We somehow got on the subject of public restrooms and from there everything went downhill.

• It seems that there are never enough handicap accessible stalls.
  
• After someone using a handicap parking stall that does not need it, the next event that raises our stress level is finding someone using a handicap accessible stall that does not need it.
  
• Stalls that have a very low commode height and low grab bars are almost worthless for us older men.
  
• When the ADA developed criteria for handicap accessible stalls, they did not take into consideration people where their arm and leg strength does not allow them to stand up from the seated position. We need higher commodes and higher grab bars.
  
• Urinals that do not allow us to lean against the wall, or a partition, for balance are difficult to use.
  
• Some older buildings that converted original restrooms to handicap have entrance door widths that do not allow wheelchair access.
  
• Almost everyone at one time or another has had to try more than one facility's restroom to find a more easily accessible stall.
  

Many of the chat room attendees related stories where they needed assistance in standing up from a commode. A few commented that they had to ask strangers for help. They felt uncomfortable asking, but did not have any other options. I mentioned that I carry a "tall-ette" with me in the car. The formed plastic insert adds four inches to the height of the commode. I do not go anywhere without it.

Most everyone feels that visiting places that do not have adequate restroom facilities is a constant source of concern and limits our activities. The subject is easily broached with your caregiver and family, but not something that you would feel comfortable discussing with friends and acquaintances. I know that it is always a consideration whenever my wife and I consider an upcoming activity or trip. You hate to be a "stick in the mud," but when you have to go, you have to go!

I would be interested if you have any tips or tricks to help minimize this concern.

Access to Medical Care for Persons with Mobility Disabilities

I ran across this web article yesterday (in MDA's Quest Magazine) and thought it would be worth sharing. The government publication it references is quite good. The Q&A section was very interesting because it explained the responsibilities of a medical facility and health care providers in regards to adhering to the requirements of the Americans with Disability Act (ADA). Most new facilities comply with these requirements, but many family practices are in older buildings and do not have adequate room or even the ability to make major modifications to their facility. My family doctor's office, for example, does have a ramp, but I do not have reasonable access to all rooms. They plan to build new offices in the near future. I plan to give a copy of this guide to my doctor in hopes he will consider these recommendations.

Below is the web article as well as a couple of sections that I took from the publication itself.

"Improving accessibility of health care facilities

The Department of Health and Human Services Office for Civil Rights, in conjunction with the Department of Justice's Civil Rights Division, has produced a free publication titled Access to Medical Care for Persons with Mobility Disabilities.

The 19-page document contains technical guidance for making health care facilities more accessible for patients with disabilities. Although geared toward health care providers, individuals with disabilities also are welcome to the publication, either for themselves or to give to their doctors.

Included in the publication are an extensive question-and-answer section; illustrations of accessible medical equipment and examination rooms; and an overview of ADA (Americans with Disability Act) requirements.

Title III of the ADA prohibits discrimination on the basis of disability by private hospitals, physicians' offices, clinics and other health care providers. The Rehabilitation Act of 1973 prohibits such discrimination by health care providers that receive federal financial assistance.

To download a copy of the publication from the ADA website, go to http://www.ada.gov/medcare_ta.htm. To be sent a copy, call the ADA Information Line at (800) 514-0301."


 

The publication begins by stating, "Both Title II and Title III of the ADA and Section 504 require that medical care providers provide individuals with disabilities:

• full and equal access to their health care services and facilities; and
  
• reasonable modifications to policies, practices, and procedures when necessary to make health care services fully available to individuals with disabilities, unless the modifications would fundamentally alter the nature of the services (i.e. alter the essential nature of the services)."
  

The last section of the publication discusses Staff Training. "A critical, but often overlooked component to ensuring success is adequate and ongoing training of medical practitioners and staff. Purchasing accessible medical equipment will not provide access if no one knows how to operate it. Staff must also know which examination and procedure rooms are accessible and where portable accessible medical equipment is stored. Whenever new equipment to provide accessible care is received, staff should be immediately trained on its proper use and maintenance. New staff should receive training as soon as they come on the job and all staff should undergo periodic refresher training during each year.

Finally, training staff to properly assist with transfers and lifts, and to use positioning aids correctly will minimize the chance of injury for both patients and staff. Staff should be instructed to ask patients with disabilities if they need help before providing assistance and, if they do, how best they can help. People with mobility disabilities are not all the same - they use mobility devices of different types, sizes and weight, transfer in different ways, and have varying levels of physical ability. Make sure that staff know, especially if they are unsure, that it is not only permissible, but encouraged, to ask questions. Understanding what assistance, if any, is needed and how to provide it, will go a long way toward providing safe and accessible health care for people with mobility disabilities."

If reasonable access is, or potentially could be, an issue for you, I recommend that you download the PDF or call the number provided for a hard copy. Being disabled is difficult enough. We should not be further handicapped by less than adequate medical facilities.

The 2008 ADA Amendment still appears to be stalled

This month's MDA Quest Magazine has several interesting articles. Two interesting articles in my opinion are the "ADA Roundup" and "Call for Help." I would encourage you to read these articles if you have the opportunity.

Reference the "ADA Roundup": The article begins by mentioning that the original act is twenty years old, but still is a "work in progress." The 2008 amendment to the ADA act appears to be in limbo with the exact language still being discussed. The EEOC has posted Q&A on the proposed amendment. It is interesting reading if you are into "government speak."

"The ADAAA states that its purpose is "to reinstate a broad scope of protection" by expanding the definition of the term "disability." Congress found that persons with many types of impairments – including epilepsy, diabetes, multiple sclerosis, intellectual disabilities (formerly called mental retardation), major depression, and bipolar disorder – had been unable to bring ADA claims because they were found not to meet the ADA's definition of "disability."

"The ADAAA defines a disability as:

1. a physical or mental impairment that substantially limits a major life activity; or
   
2. a record of a physical or mental impairment that substantially limited a major life activity; or
   
3. when an entity (e.g., an employer) takes an action prohibited by the ADA based on an actual or perceived impairment."
   

You can read more about each of these in the EEOC Q&A mentioned above.

The amendment is very positive for employees with disabilities especially in the area of possible employment discrimination. The focus will be on whether an employee is discriminated against and not if the person is disabled. "Up until Jan. 1, (2009) the courts (including the U.S. Supreme Court) interpreted the term "disability" so narrowly that many people, including those with significant disabilities, were denied ADA employment protections. One of the most important effects of the Amendments Act is that the focus now will be on whether job discrimination against a person occurred — not on the question of whether that person is disabled."

Since the amendment was passed, there has been one delay after another largely because the EEOC commissioners could not form a quorum (agreement on the language). The article went on to say that once the EEOC gains agreement on the wording changes, it must be sent to the Office of Management and Budgets (OMB) for review. Then it must be run past other government agencies and after everyone approves, published in the Federal Register. Then, the EEOC will take comments for sixty days. Afterwards, they EEOC will revise the amendment and then send the revised document to the OMB. Then the amendment changes have to be coordinated with other government agencies before finally being enacted. EEOC Program Analyst Okwesa confirmed via email to Quest that "it is uncertain that a final ADA rule will be out by September (2010).

More information on the ADA amendment can also be found in this 2009 Quest Magazine. I would encourage you to become familiar with the act and the amendment. It could be important to you some day.


By the way, for 2009, Indianapolis, IN was recognized as the national model of a disability-friendly city.