Showing posts with label accommodations. Show all posts
Showing posts with label accommodations. Show all posts

Tuesday, April 9, 2013

Don't Be Embarrassed, Just Be Their Eyes

It was embarrassing. I was undone. I kept my composure but also kept my voice at a very low volume. I hoped no one could hear us. Most of all, I hoped no one was paying attention to what we were doing and that we weren't making a scene. The last thing I wanted was for people to see her being needy because in fact, she was definitely not needy.

What brought about the anecdote was an evening's adventure to Fisherman's Wharf with my second cousin - who had glaucoma. She had explained that she had it. My interpretation was that her vision was cloudy - period. She still continued to drive, according to her accounts. In fact, she did drive me to some locations and took me sightseeing when I visited The City in order to attend the Accepted Students Reception. But the idea that she had very little sight and that she could no longer read things for herself, even with the assistance of glasses, completely escaped me.

I was beside myself. I survived. I gossiped to my mother that I was completely mortified with embarrassment. Mother said little about the matter but asked probing questions. In hindsight, the questions were probably so that she could call Irene and blather what I'd said about the evening, thus distressing Irene. I don't know. What I do know is that Irene looked forward to our having more adventures, especially with the way I threw in the unexpected to create fun, excitement, and laughter.

That brings me to my point. Few people understand essentially any of the illnesses that impact our society until the illness becomes personal in some way. Even when it's personal, as it affects a relative, we still don't understand. We simply accept the relative as who they are with a little extra on the side. It takes their explaining the illness, the accommodations, how it impacts them, and how the world is now that it's altered by the illness. It takes our understanding by listening carefully and asking the right questions in order to understand. It takes our being responsible by acting according to the ramifications that are impacting the kin and being respectful of them. And it requires that we do as much as possible to educate ourselves to speak and act in an appropriate manner. That's why I'm talking to you about one aspect of low vision I want to lead you to a few resources that aid in understanding the disease and a few other resources that will help you gain the training to know what the person is experiencing so that you can be both their assistant as well as their friend.

It wasn't until I began doing volunteer and accommodation provider work for the low vision and blind community that any comprehension of what they experience became part of my understanding. It was absolutely appropriate for me to read the menu to Irene. Because she trusted me, it was entirely alright for me to help her select the correct dollar bills so that our tab could be paid and the appropriate tip left for our server.

We didn't talk about Irene's glaucoma. Instead, we talked about her experiences as an R.N., her teaching career, her students, her travels to foreign countries and what she experienced. She spoke of a sweetheart who took her on a trip. But that was the end of the reference. For me, he never had a name. She was excited for me because, aside from her, I was the second person in all of the family of our generations who had completed a bachelor's degree and then strove to earn an advanced degree in a profession. She wanted to help me prepare for the battles that lay ahead for a woman making her way through advanced studies.

The Resnick Lighthouse for the Blind had many trainings for their volunteers. The purpose was to help them comprehend the different types of diseases that impact individuals and cause them to have either low vision or to go blind. The trainings also involved appreciating what a day in the life of a person with no vision is like. There were exercises to assist in that awareness. A speaker who is blind shared what her life is like and was willing to answer any questions about her life that would help the group better understand the various circumstances that impact her life.

What the group gleaned from the exercises and the presentation is that a person with no vision or impaired sight is just like anyone else. The trouble was that the blind have a permanent mask over their eyes that blocks the vision and cannot be removed. All other concerns are essentially the same as any other person's.
We Lighthouse volunteers also had the opportunity to learn about using a cab, making transfers by use of a paddle (for those who use wheelchairs or do not have the use of their legs), how to listen for traffic signals (talking light and talking signs), and how to be sighted guides.

Things made a lot of sense after that education. There was no need to have been embarrassed on Fisherman's Wharf nor anywhere on account of Irene's glaucoma. It was merely a new way to appreciate her and the things that become part of one's life. Actually, no type of impairment is reason to be embarrassed either as the person with the condition nor as the friend, provider of services, nor relation. Depending on how determined the person is, you may find yourself panting in order to keep up with them!

Resources:

Sponsored link: Glaucoma, The Complete Guide: The Definitive Guide to Managing Your Condition and Saving Your Sight
Sponsored link: Understanding Glaucoma (Home Use)

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Return to Work Conversations

On January 14, Robin Roberts (host of Good Morning America) made a scheduled announcement about her health status. She's been away on medical leave since August 2012 because of a rare bone marrow disease. With all the brouhaha on January 13 to entice viewers to tune in and learn what the news would be, in addition to the smiles on every face that pronounced the upcoming announcement, it was a foregone conclusion that it involved something with regard to imminent return to work. And it was.

While the news about her return to work was celebratory for all, Robin talked about some of the expected and probably didn't realize she also disclosed unexpected information. Most people diagnosed with and treated for a major illness are put on some degree of disability and remain in that status for the rest of their lives. They become part of the 97% that Romney and Ryan spoke during the 2012 campaign who subsist on entitlements and expect a handout in order to survive in an economy with increasing inflation and little real money. There are few exceptions where there is a discussion about return to work; there are fewer about accommodations in order to make that a possibility.

Robin talked about the partnership of her doctors and care providers had with regard to formulating a plan for how she will transition from being ill to gradually working her way back to the studio and full time work. She outlined the stepped process and the various types of subtle dangers of being in the studio and under the lights. She shared conversations about regaining her energy. She will not be left floundering for answers and searching for what may be appropriate and safe in the way of accommodations during her early days of work resumption and progressing to "normal" life.

Viewing Robin's announcement and the recitation of her recovery and re-entry regimen could cause some with jaded healthcare perspectives to feel she is receiving privileged treatment. Some have the opinion that because she's already in front of the camera as part of her livelihood and career, that there's a foregone conclusion that she will be returning to work, not sidelined as disabled. Her non-visible disability, albeit temporary, does not color her employment opportunities nor her right to work and earn a living.

There are those who suffer from non-visible impairments but they are not counseled in clear and specific terms about what accommodations are required for them to resume full, meaningful employment in their chosen profession. Few are counseled about what to do or what restrictions could apply to them as it relates to their line of work.

My health issue focus of choice is coronary conditions. It could easily be other non-visible conditions such as back injury, emphysema, or venous stasis ulcers. Because the heart is so central to our well being but impairments of the organ are not visible, it is my focus. There are scales for measuring disability and whether a person is still employable. There is a presumption that the disability scale for physical activity is used by doctors in order to determine whether it's feasible for a person to look forward to returning to full time work, with or without restrictions. Does that conversation happen so that the patient is aware of all of the options available to them? If they're well below retirement age, they're not savoring the idea of spending the rest of their life subsisting on social Security Disability Income and restrictions on whether or not they may work. Even if they are able to find various types of employment, they're at a loss when it comes to truthfully responding to the question, "Are you able to satisfactorily perform the principle duties of this position with or without moderate accommodations?" And if they respond that they will probably need some accommodations, the question of which and what types of accommodations should be requested comes into play.

In addition to the activity scale, there is also the disabling conditions scale that covers a large number of issues. Our focus today relates to Cardiovascular Disorders. There are eight subsections of that type of disease and all have different ratings with regard to level of disability of an individual. It is possible for a person to have more than one condition co-existing with others.

How many suffer heart attack

How many people are suffering heart attack in the u.s every year? According to Americanheart.org, there are 1,255,000 heart attacks per year in the United States. This includes new heart attacks as well as recurring heart attacks. In the United States about 1.5 million Americans suffer a heart attack every year, from which as many as 500,000 die. I could not locate information about the number of individuals who survive heart attack and return to work.

What I could find, however, is individuals do return to work after heart attack. In fact, ehealthMD offers a very detailed article about Living After A Heart Attack that includes information about a sensible return, timing, as well as not often covered information about cardiac rehabilitation. What is it like to live every day with Heart Attack? Read real life accounts from people living with this condition can be found in an article on the condition at ThirdAge.com.

So this leads to how many suffer from congestive heart failure (CHF) and the number of those survivors who return to work. According to Staying in Shape, there are approximately 5 million Americans who suffer from the disease. Although their information is quite extensive, they do not answer the question about the number who return to work after being diagnosed with CHF. However, their article is dense with information about various other related matters as well as rehabilitation therapy.

There are guidelines for patients who suffer from heart failure and desire to return to work. The Job Accommodation Network (called JAN) has an accommodation series that includes heart conditions. It would be wise to refer to that resource first when seeking guidance on what to do in order to accommodate a worker with a heart condition. It therefore appers a return to work is not out of the question and in certain conditions can be done with success. Another place where guidelines for restriction and accommodation guidance regarding health condition can be found on MDGuidelines. There is advice available for the patient in regard to the advisability of returning to work full time available in many places. One of them is Heart Failure Matters.

Most of the language relating to heart attack and CHF put the two conditions into the same category of heart failure and heart disease. The information, in most respects, about after care, prognosis, and recommendations is similar.

What is worth noting is the fact that most people are 100% invested in their physician and rely on their professional to tell them what they need to know. Survivors and their families don't ask questions. When they are put on total, 100% disability, there are no questions about returning to work, extent of activities that are acceptable (except for sex), life expectancy, medications and what they do, alternative treatments. The physician takes it for granted that if there are no questions the patient has all of the information they need and will ask if there's something that needs clarification. Additionally, the physician is focused on the condition, not the person, and their focus remains in that area. People are living in a sea of being uneducated and possible risk for another attack that didn't need to happen.

What all of this means is be proactive with regard to your health condition. It may not be visible but it is definitely real and it is mandatory that it be handled and managed properly. A dismissive physician, when it comes to questions about the condition and management of it, is not serving your needs. Form a healthy partnership with your medical practitioners. Find someone who will communicate with you in an understandable fashion. Find someone who will have not only your health condition but also you in the upper parts of their mind and concern.

Resources:
Sponsored Link: Heart Failure: Evaluation and Care of Patients With Left-Ventricular Systolic Dysfunction (Clinical Practice Guideline Number 11)

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