Rosemary Musachio’s life has been based on miracles and dreams. Like any other birth, Rosemary’s was a miracle but with a twist. Since she developed cerebral palsy at birth due to brain damage, Rosemary was presumed a vegetable by the doctor who delivered her.
Yet, another miracle happened when Rosemary proved that doctor dead wrong. For every limitation she has, she has been able to overcome it in one way or another. Although she cannot walk, she dances in her wheelchair to music. Although she cannot talk, she uses a word board to communicate quite eloquently. Although she cannot use her hands to perform daily tasks, she uses a head pointer to type on a keyboard.
Despite all her challenges, Rosemary has been able to accomplish a great deal during her life so far. She has made many of her dreams come true, one of which was becoming a writer. A year after graduating Cleveland States University Magma Cum Laude with a B.A. in Communications, she became a monthly columnist for Sun Newspapers in Cleveland, Ohio. Her column, Bit of a Challenge, was the paper’s most popular column, running for ten years. She also had articles published in The Plain Dealer and Italian Gazette. Additionally, she edited and published two monthly disability-related newsletters, The Able Informer and Ability Age. Issues still roam around the Internet. In her spare time, Rosemary writes poetry. In fact, one of her goals is to publish a book of her poetry.
Besides establishing herself as a writer and a poet, Rosemary has pursued another dream of traveling and setting new heights…literally. She has visited Italy (5 times so far), Germany, Austria, France, and Spain. During one of her visits to Italy, she even met the Pope! She also has a daredevil spirit. Several years ago she did tandem hanggliding in Ridgley, Maryland, where she went up twice at 2500ft and 5000ft. A year afterwards she took a ride on a customized motorcycle through eastern Metroparks and Chagrin Falls in Ohio. She even rode horses on a dude ranch in Colorado. No wonder her motto is “If you don’t accept challenges, you are not living.”
In September 2001, Rosemary saw an ad by TecAccess, a Virginia-based technology company, in a disability newsletter. It needed web testers, so she applied for the position. That commenced her fifteen-year career as an electronic and information technology (E&IT) accessibility analyst. Besides TecAccess, she also has worked for two other similar companies. Working for those companies has allowed Rosemary to present at major disability conferences including California State University, Northridge (CSUN), United States Business Leadership Network, and National Student Speech Language Hearing Association (NSSLHA).
Now that Rosemary is the Chief Accessibility Officer for Ruh Global Communications, she has realized another of her dreams. She is following her father’s footsteps since he was a local public relations man. She also loves the creativity that is involved in being a marketing specialist, crafting content and developing campaigns to convey important messages and ideas to the world. Particularly, Rosemary wants to help persons with disabilities like herself get their voices heard loudly.
When people say how inspiring Rosemary is, she shakes her head and rolls her eyes. Of course, she is humbled by and grateful for the compliment. Yet, she feels there’s nothing inspiring about living life to the fullest despite disabilities. Ironically, her parents and friends have been Rosemary’s inspirations. Without their love and support, she might have ended up where that doctor at the naval hospital insinuated to place her.
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Neil Milliken: hello, and welcome to axschat i'm delighted that we have a returning guest today Rosemary massage to rose it's great to have you back you're a member of our.
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Neil Milliken: Twitter Community or a regular contributor always love to have your voice on here it's been a while I think it's a couple of years since we.
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Rosemary Musachio: Last did.
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Neil Milliken: You do so, you know, please tell tell us more about Rosemary.
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Rosemary Musachio: Thanks, very much for having me back on axschat well, I was born on a military base in Naples Italy during delivery my head was bumped in I developed cerebral palsy.
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Rosemary Musachio: The doctor asked my parents, what do you want to do with her my parents looked at each other thinking this guy is crazy.
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Rosemary Musachio: To prove his assumption wrong that I couldn't do anything I graduated college, with a bachelor's in communications wrote for local Cleveland papers traveled to Europe numerous times hang gliding rode horses and rode motorcycles.
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Rosemary Musachio: Currently i'm the chief accessibility officer for global impact and write blogs, I also do web accessibility reviews for a legal firm in California.
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Rosemary Musachio: In my spare time I write poetry hope to publish my first book this year, with the help of raw global i'm also interested in spiritual phenomena and other unexplained things there's so much out there that we don't know where are afraid to know.
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Neil Milliken: it's amazing and i'm.
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Neil Milliken: i'm i'm not poetic.
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Neil Milliken: Although I have.
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Neil Milliken: read a fair bit of poetry over the over the years, so look forward to seeing you do that rose and so.
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Neil Milliken: You mentioned that you know you're the chief accessibility officer for deborah's firm root level impact and that you're doing work elsewhere, and I know for a fact that you've contributed to the iwa P ws.
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Neil Milliken: body of knowledge and so on, so how long have you been working in the field.
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Rosemary Musachio: i've been in the accessibility field for over 20 years.
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Debra Ruh: haha.
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Neil Milliken: same here.
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Debra Ruh: Yes, and and for our guests obviously Rosemary is nonverbal and she's using assistive technology to guider and.
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Debra Ruh: We pre recorded well we we have not pre recorded, but we put the questions together, and then she pre recorded her her answers but So my question is what made you decide to become an accessibility testing consultant.
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Rosemary Musachio: I had no idea i'd be in the accessibility field when I graduated Cleveland State University, I wanted to be a journalist and a public relations writer.
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Rosemary Musachio: In fact, I wrote a monthly column in a local newspaper and some editorials but that didn't turn me much so I searched for other opportunities.
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Rosemary Musachio: In 2000 an ad in a disability newsletter jumped out at me about this company called tech access founded by one of our gracious hosts Deborah calling for accessibility testers.
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Rosemary Musachio: So I applied and Deborah saw something in me, God knows what and hired me tech access taught me the basics about accessibility testing.
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Rosemary Musachio: Sites accessibility testing I also did business development, training programs and newsletters.
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Rosemary Musachio: To companies in 15 years later Deborah wanted me again at her new company runs global communications which is now around global impact.
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Rosemary Musachio: I am still surprised when some clients come to us and don't know a thing about making their websites software or products accessible people wake up.
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Rosemary Musachio: If you don't make what you offer an accessible you put your business and legal dress can you lose out in a share of over a trillion dollar profit that's how much persons with disabilities worldwide have in disposable income.
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Debra Ruh: And i'll also say that Rosemary is accepted the position as chief accessible the officer for billion strong our new nonprofit.
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Debra Ruh: And she's she's got a great sense of humor, as you can see, so over to you nail.
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Neil Milliken: So I know from all of the times that you've been on access chat and single tweet that you're determined to support patients in healthcare settings and you have some you know some some strong views about this, why is this mission so important to you.
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Debra Ruh: Rosemary we have a backup if you need it.
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Debra Ruh: Because everyone's everyone's for the texture technology don't want to work so backup common.
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Debra Ruh: Vision impairments to experience barriers in medical settings, as I have doctors and nurses are supposed to make patients feel better.
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Debra Ruh: It doesn't only involve administering medicine or performing surgeries it also involves showing compassion and listening to their needs.
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Debra Ruh: In fact, studies have shown that effective communication by nonverbal nations can make them recover faster, for instance, Asian spend two to three days less than icu when they can express themselves more effectively patients become less frustrated which lowers blood pressure and stabilizes.
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Debra Ruh: respiration their comfort level also increases, since they can communicate if they are not positioned correctly in their hospital beds, for example.
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Debra Ruh: So there's the group that communication impacts healing and recovery, the problem is most medical and nursing schools, do not train students, how to communicate with diverse patients.
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Debra Ruh: hmm good point good point.
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Neil Milliken: yeah very, very good point that I know you've got a another question coming up there, but I, I think that is something I came across recently and we had metallica's me know on.
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Neil Milliken: On access chat and and some of the stuff that they're doing is designed to help nonverbal patients communicate in the settings, so I think that the.
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Neil Milliken: You know, aside from using a C and head point is that the developments in tech are coming that really holds some potential that enable people to communicate and will have the benefits that you don't lose it, so I think this is something that we will all hold out hope for.
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Debra Ruh: yeah it is she was an amazing guest, I wanted to get definitely connect Rosemary with her because Rosemary is using I I gave.
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Debra Ruh: I technology and had pointer and other technology but she's she's a she loves her technology so she's always interested in beta testing and and getting involved in this sense, so.
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Debra Ruh: Rosemary will you describe some of your experiences during your most recent hospital stay I know it's been a year ago.
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Rosemary Musachio: There have been numerous instances where I felt subhuman during hospital stays because I could not communicate and nurses and other medical staff did not have time or patience to try to understand.
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Rosemary Musachio: They also may not have been trained to interact with nonverbal patients, for example in one hospital stay the IV came out of my arm, causing my arm to swell up and become blue.
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Rosemary Musachio: I tried to show the nurse by lifting my arm, but he did not get the hint until he actually saw the IV line, then he blamed me for moving my arm.
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Rosemary Musachio: Other times I kept yelling because I needed to go to bathroom or I was slipping down the bed nurses walked by my room without coming in.
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Rosemary Musachio: When someone would finally come my eyes would look towards the pillow indicating I wanted it under my head or I point to my pubic area indicating I wanted to urinate.
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Rosemary Musachio: Even then, sometimes they could not understand me once a nurse came in and told me to shut up after i've been yelling that I needed to use the bedpan.
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Rosemary Musachio: One other example is I accidentally press the call button, when I was targeting the button to change TV channels, so the nurse removed it from my REACH.
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Rosemary Musachio: These incidents show nurses assume I did not know any better, or that I just wanted attention if I could talk, they would not assume this since I can tell them what I need.
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Debra Ruh: is to true and it's so sad too, so if I if i'm using that worst call button and in the wrong way you're just going to take it away from me move it on amazing, and certainly not doesn't speak very highly of that particular nurse.
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Debra Ruh: Rosemary besides patients who are non verbal what barriers to patients with vision, hearing or cognitive issues facing medical settings.
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Rosemary Musachio: Patients with cognitive impairment may not know how to express how they feel or what hurts, they may not know some of the medical terms that doctors or nurses tell them.
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Rosemary Musachio: Patients with hearing impairments obviously can't hear what they say if the hearing impaired individual also cannot verbalize they may encounter the same barriers that nonverbal patients who can hear face.
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Rosemary Musachio: Patients who are blind or visually impaired can see if nurses come in their rooms with shots to give them, for example, common sense dictate that the nurse would describe everything to the blind individual, but that may not happen.
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Debra Ruh: excellent points yeah.
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Neil Milliken: Absolutely so.
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Neil Milliken: The communication issues are so important, and they impact the communities efforts to get good care and hospital and other healthcare situations and we've seen.
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Neil Milliken: Stories like yours and heard about these things in the UK to where there have been scandal after scandal of people being left to die, essentially because they're not able to communicate, so how can we improve this, how can we solve these problems, because it shouldn't go on like this.
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Rosemary Musachio: Many techniques and tools can facilitate communication between nonverbal patients in hospital staff.
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Rosemary Musachio: Some individuals have voice synthesizers, such as the eye gaze where they activate words and letters, by looking on a computer screen by a couple of seconds or blinking.
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Rosemary Musachio: These devices have to be positioned correctly so patients can access them accurately, especially if they are in bed family members or caregivers can help set it up.
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Rosemary Musachio: If the patient does not have a communication device or becomes nonverbal during the hospital's day the hospital should have communication devices or ipads with communication Apps.
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Rosemary Musachio: For instance, the icu communicator for ipads, not only does the APP help nonverbal patients, it also helps patients who don't speak English in slash or are hearing impaired.
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Rosemary Musachio: The APP has screens showing body parts pain levels and needs someone may point to the name image or the phrase, I need to use the bathroom on the APP screen, for instance.
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Rosemary Musachio: Conversely, if the patient is def a medical provider can point to images of different body parts or pain levels on the APP is to ask them basically what's bothering you.
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Rosemary Musachio: Another hospital communication APP is small talk intensive care, it has icons with associated phrases such as I have chest pain, or I feel weak.
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Rosemary Musachio: Sometimes patients do not have enough motor control to point to an image or face on an iPhone or iPad.
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Rosemary Musachio: that's when picture or word boards, with the same content for Apps may serve better, since they have more space for patients to point to.
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Rosemary Musachio: cremate boards also are available, such as easy board by the data and the easy board has several versions, including icu and Nina mess, with specific words and phases for each hospital setting.
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Rosemary Musachio: For instance, the nicu boards include words describing a patient state, I called scared and desires, I need to sit up.
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Rosemary Musachio: I see your boards also include a pain chart that includes words for pain levels discomfort types and personal hygiene.
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Rosemary Musachio: Each board also has the alphabet so patients can spell words, since these boards are inexpensive hospitals can purchase them to have for each floor unit.
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Rosemary Musachio: Not only are these sports ideal for patients who can speak or have trouble speaking medical professionals can point out words pictures on these boards to patients who can't hear.
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Rosemary Musachio: They also can ride on blackboards for patients who are hearing impaired.
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Rosemary Musachio: Even more primitive but effective communication methods involve deciphering gestures and facial expressions such as repetitive gazes at something pointing even frowning.
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Rosemary Musachio: Returning to my IV experience if the nurse could have figured out that my waving my arm men hey my arm hurts and is becoming swollen it would not be so bruised up.
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Rosemary Musachio: Studies have shown that effective communication by nonverbal patients can make them recover faster.
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Rosemary Musachio: For instance, patients spend two to three days less in icu when they can express themselves more effectively.
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Rosemary Musachio: Patients become less frustrated which lowers blood pressure and stabilizes respiration their comfort level also increases, since they can communicate if they are not positioned correctly in their hospital beds or example.
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Debra Ruh: yeah I know that whenever my daughter Sarah was in the hospital most of.
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Debra Ruh: She you know she she tries to guess what you want her to say she she tries to be accommodating and so you know when they were saying what's your pain level.
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Debra Ruh: She didn't really understand how to answer that so and they had they told her to look on the chalkboard that was across the room and they had these tiny little faces.
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Debra Ruh: But she couldn't see from cross she couldn't see it, so we actually brought her communications board in and I stayed with her the whole time.
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Debra Ruh: And that really goes back to that goes to our next question can patients with disabilities or family members do anything to help prevent communications breakdown.
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Debra Ruh: between them in the medical staff and not only did I see that with my daughter, but I saw it with my mom who.
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Debra Ruh: She didn't have a disability until later in life, but when she was in the hospital she had a very serious disable disability that's why she was in the hospital.
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Debra Ruh: So normally she didn't have communications problems, but during this particular hospital stays she did.
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Debra Ruh: And she was the treatment, she was experiencing, it was terrible I wound up going to medical.
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Debra Ruh: Leadership about it, I was so upset about it so Rosemary what can what can those around us that love somebody with a disability do.
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Debra Ruh: Whether the person has a disability, all the time, where maybe they have a temporary disability to support their loved ones with disabilities and hospital situation.
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Rosemary Musachio: family members or caregivers can make information sheets, so their loved ones or clients can take them to the hospital or medical office.
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Rosemary Musachio: These sheets should include personal information I address insurance medicine, the patient takes and allergies.
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Rosemary Musachio: These sheets should also include how the patient communicates, for example on my information she might have I can hear and understand perfectly.
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Rosemary Musachio: So please talk with me as an adult in a normal tone of voice might yes responses are indicated by nodding my head vertically raising my eyes or making a sound.
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Rosemary Musachio: My no responses are indicated by shaking my head horizontally or remaining silent.
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Rosemary Musachio: I also communicate with a word Board, which is, in my backpack on my wheelchair or in the kitchen on the bottom shelf of the radio stand.
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Rosemary Musachio: If a table is available unfold, the board on the table, keep it folded otherwise I use the lower knuckle of my right thumb to point to each letter or word.
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Rosemary Musachio: Please sit on my left side and say the item allowed as I point to it guessing what i'm saying saves time and energy.
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Rosemary Musachio: Make sure all departments and shifts see the information sheet if the patient is admitted in the hospital, the information should not only be put in their chart that also on the wall about their bed.
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Rosemary Musachio: Besides the sheet patients should bring whatever assistive technology they use, whether it be a voice synthesizer or mobile device with Apps with them.
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Rosemary Musachio: and other thing back in March 2020 the office of civil rights, issued a bullet and basically stating a friend or caregiver can be with patients who have communication needs.
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Rosemary Musachio: So if the hospital says, you cannot be with someone with communication means tell them, you have a right to be there, according to the Americans with Disabilities Act.
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Neil Milliken: Now, very good point and absolutely.
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Neil Milliken: If we got the tech, we ought to bring it with us and the medical professionals need to take the time to read.
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Neil Milliken: All of the documentation they bring with you, your personal me.
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Neil Milliken: They laid out so they don't follow them that's that's really no good man so.
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Neil Milliken: Given all of the issues that you've seen experienced and we know that the Community experience.
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Neil Milliken: yeah I think it's really important.
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Neil Milliken: To have leadership.
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Neil Milliken: Around disability inclusion in hospitals, so should.
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Neil Milliken: healthcare providers actually appointed chief accessibility officers to lead their efforts to improve how they serve the disability community.
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Rosemary Musachio: Having achieved accessibility officer see away is vital for hospitals clinics medical offices and dental offices.
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Rosemary Musachio: If they see Oh, he has a disability, it is an advantage because she or he knows from experience what patients with disabilities need to have pleasant hospital stays and quicker discharges.
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Rosemary Musachio: The CRA should ensure healthcare providers have trained professionals to interact with patients with disabilities.
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Rosemary Musachio: By trained, I mean knowing nonverbal cues low tech and high tech devices and, most importantly, treating them with compassion and respect.
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Rosemary Musachio: The accessibility executive can establish training programs like SPC s to communications training that covers everything from understanding communication needs to implementing communication strategies.
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Rosemary Musachio: In fact, these types of training programs should be mandatory, the coi must make sure patients with other disabilities are treated equally, also.
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Rosemary Musachio: For instance, make all patient documents available electronically and accessible for patients who are blind have vision impairments, or have dexterity impairments, who have difficulty turning pages.
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Rosemary Musachio: Additionally, the coi has to think about patients who have neurodiversity disabilities, such as autism, maybe make certain hospital rooms soundproof and softer lighting not fluorescent.
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Rosemary Musachio: medical equipment is another area for the coi to consider a personal aside a few months ago, I had a cat scan.
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Rosemary Musachio: Since my cerebral palsy makes my body move in voluntarily sometimes the X Ray tech literally take my body, including my neck down to the table.
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Rosemary Musachio: I was suffocating, as I went through the narrow tube so hospitals and medical centers must invest in open scanning machines where patients sit down in a small room in the machine scans them.
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Rosemary Musachio: Of course, the room has to be wheelchair accessible same goes for men mongodb machines, they have to be wheelchair accessible someday some brilliant engineer will invent them Mr Murphy bra wouldn't that be awesome.
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Neil Milliken: Absolutely fin scan so thank you, you know that I think really an important set of points that you made about how healthcare organizations, need to be considering the needs of patient.
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Neil Milliken: Do you have any final thoughts before before we close Rosemarie i'm sure you have.
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Rosemary Musachio: medical facilities can provide all the training to their medical staff have the assistive technology to facilitate communication with patients with disabilities.
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Rosemary Musachio: But if they don't show compassion and patience, it still would affect the interaction between medical professionals and patients, even if they don't have disabilities.
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Rosemary Musachio: One of the reasons, doctors, nurses and medical technicians don't show these things is that hospitals are understaffed.
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Rosemary Musachio: The general ratio is one nurse to every five patients now with covered the ratio, maybe one to date.
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Rosemary Musachio: harris's can't take time to understand the patient with communication needs if she has for other patients to see.
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Rosemary Musachio: Doctors are worse because their time is dictated by insurance the medical profession has to undergo human ization We just have to continue to speak up.
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Rosemary Musachio: When hospital send you surveys filling it out, let them know what they do wrong and right right to hospital administrators and Ombudsman.
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Rosemary Musachio: collected voices will be heard final words thanks so much for having me on access chat it has been great being with all of you all again, I hope, a lot of medical professionals have listened to our discussion.
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Neil Milliken: Thank you so much, and I will share this with with as many people as I can, because I think it's really important that that that this gets shared I, I know that you're and we want to thank David and also gosh i've done it wrong.
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Neil Milliken: i'm so bad Richard for helping you out rich in the background.
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Neil Milliken: Who has been giving some.
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Neil Milliken: I was reading the script.
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Neil Milliken: Rich has been giving some technical support in the background and.
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Neil Milliken: Make sure that your voice gets hurt so.
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Neil Milliken: i'll mangle my words are mixed my.
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Neil Milliken: And also say thank you to our sponsors who aren't Coca Cola they're actually Barclays access are my clear text and micro link, so thank you to them to for making sure that everyone's voices get heard.
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Debra Ruh: Yes, thank you Rosemary we so appreciate you and and and Rosemary is such a great example of.
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Debra Ruh: Just because she doesn't speak in the traditional manner doesn't mean that she's not brilliant so let's stop assuming people can't participate in society because societies disabling us this ridiculous.
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Neil Milliken: Absolutely absolutely.
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Debra Ruh: So thank you Rosemary and thank you, Neil.
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Neil Milliken: Thank you.
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Debra Ruh: hi everyone.