How to Support a Friend with Breast Cancer

Lifestyle

Staff Writer

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September 30, 2019

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How to Support a Friend with Breast Cancer

October is National Breast Cancer Awareness Month

Receiving a shocking breast cancer diagnosis disrupts a woman’s life in countless ways, but it shouldn’t change her friendships. If anything, going through this life-changing journey should make the bonds between friends even stronger.

Once the diagnosis sinks in, knowing what to do and say can help you relax back into your friendship and feel confident in the support you already provide in countless ways. It can also help your loved one through her diagnosis, treatment, and recovery. If she knows she’s got a loyal corps of friends to rely on, she can let her guard down to rest, heal and reflect.

Here are five ways practical ways you can help:

Listen

While your friend is reeling from her news, her mind will be torn in dozens of directions, figuring out how to tackle her new diagnosis while also managing things at home, with her family, and possibly even work.

Let her freely express her fears and concerns — and simply listen. Resist the urge to fill the silences and to offer unsolicited advice. Your friend needs a shoulder to lean on, which isn’t the same as wanting you to solve her problems.

It’s also best not to share stories about other people’s negative experiences or to tell your friend how she should feel. Saying things like, “It could be worse” minimizes the gravity of what she’s going through. Instead, acknowledge how unnerving and complicated the situation must feel.

Above all, let your friend know you’ll be by her side for the long haul, not just in the early stages and that she can trust you when she’d like to keep information and her thoughts and feelings private.

Offer Specific Help

The classic response to people in a crisis is, “Let me know if you need anything.” But the truth is, in most cases, that open-ended statement isn’t helpful at all since it’s likely your friend will feel awkward calling you out of the blue for a favor. Instead, try offering to help with specific tasks, such as:

Buying groceries
Cleaning the house
Doing yard work
Driving kids to activities
Organizing meals
Pet care
Picking up prescriptions
Managing a CaringBridge or similar page to share updates

You can also talk to her caregiver for input on more ways to help. Since they often feel like they need to be strong for their loved one and able to handle things all on their own, caregivers are reluctant to ask for support, even when they need it. Don’t forget that cancer treatment is a journey for the whole family.

Offer a friend support during breast cancer treatment. — *photo credit: National Breast Cancer Foundaion*

Give Her Thoughtful Gifts, Cards

Little gifts or notes go a long way toward brightening someone’s day and are a way for not just local, but out-of-town friends to offer support. You can even reach out to family and friends to mail you a note and present them all at once in a special box, perhaps on a significant day or milestone in her treatment. Gift ideas might include:

Amazon gift cards so she can shop from home
Care packages with lip balm, tissues, lotion, and hard candy for a dry mouth or metallic taste from medication
Colorful, fun socks
Cute water bottles
Drawings from a child
Gift cards for electronic reading devices (Kindle, Nooks, iPad)
Journal
Magazines, books
Notebook with pockets to keep track of information
Pajamas, robe, silky pillowcase
Pictures of friends
Scarves, hat

Gifts for her caregiver are also a kind gesture. You may also consider insisting you don’t want a thank you note in return for any gifts.

Offer to Go to Appointments

If your friend feels overwhelmed, offer to go to doctor appointments to take notes and ask questions she might not think to ask. You can also be a “chemo” buddy. Driving her to and from as well as sitting with her during chemotherapy or radiation therapy treatments is a bigger help than you may ever realize. Not only will your friend appreciate the company and encouragement, but it can also give her caregiver a break.

Visit and Include Her in Activities

Make plans to visit to cheer your friend up at home to give her something to look forward to. Make sure to check with her first, though. You may also want to coordinate your visit with her caregiver so he or she can take a break or run errands while you’re there.

When you’re with your loved one, don’t focus the conversations only on cancer. Treat your friend like you did before. Ask for their advice and input. Share news about school, church, work, or the neighborhood. Ask about her family, job, and what she’s been doing outside of breast cancer.

If your friend seems tired, graciously end the visit and let her know you’ll be back in touch to set up another visit. On the other hand, if your friend feels up to it, offer to take her for a drive, to a movie, the mall, a restaurant, on an errand, or anything else she may be up to doing with you or with your usual group of friends.

She’ll want to have a “normal” life as much as possible, so keep inviting her to any events or activities you ordinarily go to together.

Your Friendship is Enough

You may begin to discount your ideas on how to help or feel like simply being present isn’t enough. But more than any task you could carry out on your loved one’s behalf, it’s your love they need the most. Helping your loved one feel supported and strong through her breast cancer journey is everything she needs to succeed.

[Originally published by AdventHealth; reprinted with permission.]

How to Develop Care Plans to Help Both Older Adults and Caregivers

Staff Writer

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September 30, 2019

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How to Develop Care Plans to Help Both Older Adults and Caregivers

Are you a caregiver for someone with Alzheimer’s disease, dementia, or another chronic health condition? Caregivers are often family members or friends of a person who is in need of care. Caregivers may manage everything from medications and getting dressed in the morning to doctor appointments, social events, and meals.

What is a care plan?

A care plan is a form that summarizes a person’s health conditions and current treatments for their care. The plan should include information about:

Health conditions
Medications
Healthcare providers
Emergency contacts
Caregiver resources

You can ask the doctor of the person you care for to help you complete the care plan. At that time, you can also discuss advanced care plan options such as what follow-up care is necessary, end of life care options, and resources that are available to help make things easier for you as a caregiver. Try to update the care plan every year or if the one you care for has a change in health or medications to keep the care plan current, and remember to respect the care recipient’s privacy after reviewing their personal information.

How do you develop a care plan?

Start a conversation about care planning with the person you take care of. You can use the “My Care Plan” form to help start the conversation. If your care recipient isn’t able to provide input, anyone who has significant interaction with the care recipient (a family member or home nurse aide) can help complete the form.
Talk to the doctor of the person you care for or another health care provider. Use the “My Care Plan” form as a starting point for your discussion. A physician can review the form you started and help to complete it, especially if there is a conversation about advanced care planning.
Ask about what care options are relevant to the person you care for. Medicare covers appointments that are scheduled to manage chronic conditions and for discussing advanced care plans. Medicare covers care planning appointments specifically for people with Alzheimer’s, other dementias, memory problems, or suspected cognitive impairment.
Discuss any needs you have as a caregiver. 84% of caregivers report they could use more information and help on caregiving topics especially related to safety at home, dealing with stress, and managing their care recipient’s challenging behaviors. Caregivers of people with dementia or Alzheimer’s are particularly at greater risk for anxiety, depression, and lower quality of life compared to caregivers of people with other chronic conditions.

What are the benefits of a care plan?

Care plans can reduce emergency room visits, hospitalizations, and improve overall medical management for people with a chronic health condition, like Alzheimer’s disease resulting in better quality of life for all care recipients.
Care plans can provide supportive resources for you, the caregiver, to continue leading a healthy life of your own.

Source: CDC

ASL Music Interpreters Amp Up Accessibility for the Deaf Community

Entertainment

Nancy DeVault

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September 30, 2019

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ASL Music Interpreters Amp Up Accessibility for the Deaf Community

Research suggests that listening to music is good for overall health. It can enhance happiness, lower stress and boost learning and memorization, among other benefits. Darci Zook proclaims music grants her a “euphoric peace.” The 29-year-old Springfield, Illinois resident has never actually ‘heard’ music though. She is deaf but her connection with sound is, well, loud and clear. “My ears and body pick up different sound waves, vibrations and low notes,” Darci says, explaining that her other senses are heightened by music. She also loves to study lyrics and analyze the creative metaphors of songs.

Darci insists being deaf doesn’t (and shouldn’t) hinder her ability to enjoy music; and science agrees. Dr. Dean Shibata, a professor in the Department of Radiology at the University of Washington, published his music-related findings. “The brain is incredibly adaptable. In someone who is deaf, the young brain takes advantage of valuable real estate in the brain by processing vibrations in the part of the brain that would otherwise be used to process sound,” Shibata shares.

ASL music interpreters make concerts more accessible. — *image source: Shutterstock*

However, Darci’s experience is unfortunately obstructed by inadequate access. Approximately 37.5 million Americans – an equivalent to 15 percent of American adults – have trouble hearing, according to the National Institute on Deafness and Other Communication Disorders. Yet accessibility remains a barrier for the deaf and hard of hearing community – even on a daily basis at schools, hospitals, workplaces and, impacting Darci’s passion, entertainment venues. The Americans with Disabilities Act (ADA) made significant improvements; but the law doesn’t exactly solve all challenges, so those in the deaf community have to self-advocate. For example, after buying a concert ticket, Darci must proactively request an American Sign Language (ASL) interpreter (sometimes three to six months in advance), educate uninformed venue personnel about her inclusive rights, wait for approval/denial and hope the hired interpreter’s skill level is satisfactory. “Studies show that music has a powerful impact on everyone, and that includes the deaf and hard of hearing community. Yet, there is not enough exposure and awareness when it comes to providing accessibility. Because of that, I am passionate about spreading awareness and educating people for our future deaf and hard of hearing children and community to be able to enjoy the experience without facing constant barriers,” Darci declares.

‍Interpreters and Artists Tune In

A uniquely focused group of ASL interpreters specializing in music are also championing accessibility, specifically within the music and entertainment industries. ASL is an official language with precise manual parameters, including hand shape, palm orientation, hand location/placement, hand movement and non-manual markers which, traditionally, include somewhat limited motion of the shoulders, head and face. In recent years, however, online videos have gone viral of ASL interpreters enthusiastically signing music using vibrant, unconventional body language and gestures. These interpreters respect the language and its parameters, and are simply enhancing its communication impact when appropriate (as with music).

The ASL music “movement” aims to harmoniously bridge a hearing-centric experience over to a visually-centric experience. This language evolution is pioneered, in part, by Amber Galloway Gallego and her Texas-based company, Amber G. Productions. Amber’s team, comprised of about a dozen dynamic ASL music interpreters (both deaf and hearing-abled), travel nationwide to interpret for chart-topping artists (like Adele, Drake and Red Hot Chili Peppers, to name a few); plus, they focus on enhancing the musical experience of deaf festival-goers. “I do at least forty to fifty events per year, and that includes festivals which may include four shows a day,” says Kelly Kurdi, a multilingual interpreter with Amber G. Productions who studied at Gallaudet University, an institution for the deaf. Amber suggests that solely signing a song’s words and, then, pausing during instrumentals is an injustice. She’s teaching others how to fully immerse deaf music lovers through expression and emotion ─ and without missing a beat in a drum solo! Kelly demonstrates in the following video:

“Interpreters of music in the past just signed the lyrics using a lot of the same sort of [language] parameters as when we are doing platform interpreting; so sort of staying still and standing in one place. When there would be an instrument playing, they would sign the word ‘music’ and point over to the guitar soloist, for example,” Kelly, who is actually hearing-abled, reiterates. That certainly doesn’t fully communicate to deaf fans a song’s entirety. Now, to the contrary, “We indicate all of the instruments that are being played and the intensity level using our bodies. We see the music as having multiple layers, and we’re responsible for bringing all of that… not only the lyrics, which is what people normally think of, but also the tone, the emotion, the rhythm,” Kelly describes. A skilled ASL music interpreter customizes body language and vocabulary to suit an artist therefore, with the right execution, a deaf listener should be able to see and feel the difference between, for instance, a song by The Weeknd (a masculine R&B vibe) versus a song by Dolly Parton (a feminine country feel).Darci loves the new approach to music interpreting and has even specifically requested interpreters from Amber G. Productions for an event. “When an ASL interpreter is a part of this beautiful journey, the connection is immediate and life-changing,” she tells AmeriDisability. “The deaf person depends on us to be at the same caliber of the artist,” Kelly says. However, she acknowledges that interpreters themselves uniquely impact the experience. “Each song is going to be interpreted differently because interpreting in and of itself is an art… different sign choices, a different flow,” she says.

*Joann Benfield music interprets at the Warped Tour. photo credit: Amber G. Productions*

There is a lot of prep work, research, memorization and grunt work that happens behind the scenes. “We also have to fight for access and deal with venues for what they provide in terms of interpreter and client placement, sound packs, receiving a set list or material before the show (if we are lucky), etc.,” says Joann Benfield, another professional with Amber G. Productions. “Being a deaf interpreter myself (I am deaf and a music/performance interpreter), there is an additional layer that I have to incorporate in my prep work. I have to memorize my material more than my hearing counterparts because I do not solely depend on my hearing to do the work for me. I also have to be able to work with a feeder (a team interpreter that feeds missed information to me that helps me continue interpreting without stopping) which is another skill level of being an interpreter,” Joann explains.

‍Joann is accustomed to working alongside music artists but, in 2014, she was in the limelight (with Amber and another ASL interpreter, Holly Maniatty) thanks to an appearance on Jimmy Kimmel Live!. During a “sign language rap battle,” the three interpreters faced off as rapper Whiz Khalifa performed his song “Black and Yellow.” [Watch the video here.] Interpreting the rap genre is, of course, more challenging because it demands rapid and creative wordplay. “You have to truncate your signs to be able to keep up with the beat to make sure it’s looking like rap,” Amber shared in a video interview.

Accessibility Takes Center Stage

“I really enjoy the opportunities to talk to artists about what we do and the fact that they have deaf fans,” Kelly offers. In a perfect world, an interpreter would always be on stage just like any other part of the band. The music industry isn’t quite there yet. But, perhaps, the writing is on the wall.

Chance the Rapper promoted inclusion with ASL music interpreters. — *Matt Maxey, Chance the Rapper and Kelly Kurdi promote inclusion on tour. photo credit: Deafinitely Dope*

While a growing number of performers are incorporating interpreters at shows, in 2017, Chance the Rapper became the first mainstream rapper to hire a tour ASL music interpreter and, thus, eliminating the need for his deaf fans to issue a laborious venue request. Along with Matt Maxey, owner of the music interpretation company DEAFinitely Dope, Kelly joined Chance on tour ─ something she regards as an epic career highlight. Dedicated to promoting inclusion, Chance also gifted fifty front row tickets free of charge to deaf and hard of hearing fans. Check out this video of Kelly and Matt teaching Chance how to sign his song “Blessings.”

‍Striking a Change-Making Chord

Like all languages, ASL is a means of communication but also a means of art expression. With a demand for more inclusive shows and videos, ASL music interpreters are working to make this musical art form more accessible and more enjoyable. Some within the deaf community find the attention surrounding music interpretation (specifically by hearing-abled) to be a bit controversial. In their book Deaf Culture: Exploring Deaf Communities in the United States, authors Irene W. Leigh, Jean F. Andrews and Raychelle Harris even described it as unintentional language and cultural appropriation. For the majority of others, including the celebrated music interpreters and their fans, the true controversy is that this level of advocating is still necessary – three decades after ADA became law.

Amber promotes ASL music interpretation on Jimmy Kimmel Live — *Amber Galloway Gallego and Whiz Khalifa unit on Jimmy Kimmel Live for an ASL rap battle. photo credit: Amber G. Productions*

Encore of Inclusion

“Music is inclusive and it is meant for everyone to enjoy. There is absolutely no reason to deprive deaf people from experiencing a concert,” Darci affirms. Joann agrees, “Fighting for access has become the new norm within our work [as music interpreters]. It is frustrating and upsetting that we have to constantly deal with this almost everywhere we go. For those of us who are passionate about what we do, we have naturally become advocates for the deaf community because we want to ensure that they have equal access to the concert or performance as their hearing counterparts.”

Engineers and technologist are working to improve accessibility too. Not Impossible Labs created an innovative wearable technology called Music: Not Impossible. With a goal to enhance the sensory experience for deaf music listeners, the technology translates sound onto the skin through vibration. According to the company’s website, “the battery-powered wireless wearable includes a harness, two wristbands and two ankle bands, supplying 24 distinct areas of vibration across the user’s body, or what we call a ‘Surround Body Experience.’ Each element receives complex polyphonic musical expressions across the skin. Wearers may adjust the intensity of vibrations, which are visually represented via customizable color LED lights.”

To help further this accessibility conversation, Darci urges fellow music lovers to get involved with their state’s Deaf and Hard of Hearing Commission; and, if support is needed to navigate an accessibility barrier, contact the National Association of the Deaf. If you are interested in studying Amber’s style of ASL music interpretation, reserve a spot at the ASL Music Camp. The immersive week-long session is led by passionate ASL music interpreters, artists and dance instructors.

Darci Zook enjoys concert thanks to ASL interpreters — *Darci Zook and a pal enjoying a concert. photo credit: Darci Zook*

Looking for similar content from AmeriDisability? You may enjoy reading “Tune into the Benefits of Music Therapy.”

Nancy DeVault is an award-winning writer/editor contributing to local and national publications.Her storytelling spans a wide range of topics, including charity, disability,food, health, lifestyle, parenting, relationships and travel. Married with two kiddos, Nancy describes herself as a lover of the outdoors, fitness, news,traveling and binge reading magazines while sipping coffee.

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Feature photo source: Shutterstock

Service Dogs are More than ‘Man’s Best Friend’ for Veterans

Lifestyle

Staff Writer

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September 25, 2019

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Service Dogs are More than ‘Man’s Best Friend’ for Veterans

Service dogs offer countless benefits to help combat symptoms of post-traumatic stress disorder (PTSD), but they can also be instrumental in rebuilding and uniting families after veterans come home from serving their country.

According to the National Institutes of Health, up to 30% of American military veterans experience PTSD after returning home from combat. Yet only about 40% of those individuals ever seek help.

Service animals are recognized under the Americans with Disabilities Act. The designation is limited to dogs who are trained to do work or perform tasks for a person with a disability. In some cases, these tasks are highly physical in nature, such as guiding a person who is blind or pulling a wheelchair. Other roles service dogs play may be less immediately visible, such as providing a calming presence to a person with PTSD who is experiencing an anxiety attack.

More Than a Companion

Service dogs are highly trained to assist military veterans in achieving better quality of life. Veterans who utilize service dogs report lower levels of depression and anxiety, fewer hospitalizations and a reduction in medical and psychiatric costs, among other benefits. Beyond what these canines help prevent, consider these examples of what they empower:

· Ease loneliness and stress

· Reduce social anxiety

· Decrease reliance on prescription drugs

· Help veterans return to work or attend college

· Strengthen personal relationships

· Provide security, protection and unconditional love

Up to the Task

Just like the members of the armed forces they help, service dogs are highly trained professionals with an important job to do, including tasks such as these:

· Turn on lights and open doors before a veteran enters his/her home

· Nudging, pawing or licking to interrupt flashbacks or nightmares

· Utilizing body weight as a grounding mechanism to reduce anxiety or alleviate panic

· Retrieve bags with medications or a list of numbers to call during a medical emergency

· Provide security and reduce hypervigilance in public places

· Pick up dropped items and assist with mobility and ambulation

To see video stories of how service dogs have impacted the lives of veterans and their families, visit DogChow.com/service. In addition, for every purchase of specially marked bags of Dog Chow Complete Adult through Nov. 1, 2019, the brand will donate 5 cents, up to $100,000, to the Tony La Russa Animal Rescue Foundation Pets and Vets program, which matches veterans experiencing PTSD and other challenges with service dogs, free of charge.

When You See a Service Dog

Service dogs are often large breeds that stand out in a crowd, and their calm demeanor can make it seem perfectly appropriate to approach and pet them. However, it’s important to remember that service dogs are at work and distractions can prevent them from providing the service their owners need.

The International Association of Canine Professionals offers these etiquette tips for interacting with service dogs and their owners:

· Remember that a service dog is there as support for a person with a physical or health disability, which may or may not be readily apparent.

· Respect that health conditions are private matters most people prefer not to discuss with strangers.

· Just as you would not stare or point at a person in a wheelchair, avoid calling unnecessary attention to a person with a service dog.

· If you must interact, always focus your attention on the handler, not the dog, so the dog can stay focused on its job. Avoid whistling, clapping or otherwise distracting the dog.

· Teach children not to approach service dogs. Although most are trained to avoid aggression, a perceived threat to their handlers could result in warning growls or barks that may scare a child.

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[Family Features]

Adaptive Coaches Fiercely Flex the Limits of Fitness Training

Nancy DeVault

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September 25, 2019

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Adaptive Coaches Fiercely Flex the Limits of Fitness Training

There are fitness trainers to fit and motivate every type, from the firm drill sergeant to the nurturing cheerleader and every style in between. These exercise experts can help you define your goals, customize wellness plans, keep you accountable and, when necessary, adapt execution to safely and efficiently achieve results.

Adaptive athletes are revolutionizing the fitness industry, from both the trainer and trainee perspective. Gym rats no longer look the same as more and more athletes of all abilities hit the weights and explore adaptive sports. Health clubs are improving accessibility with inclusive design and equipment. Coaches are seeking specialty certifications to better support their adaptive clientele; not to mention a growing number of these coaches actually have first-hand experience as adaptive athletes themselves. AmeriDisability connected with three toughies breaking down bodybuilding barriers to fiercely flex the limits of fitness.

The Strongest Man

Kevin Ogar says CrossFit helped him turn his life around physically and mentally. Twice actually ─ first when he fell in love with the sport in 2007 and again after he was paralyzed from the waist down in 2014. “The community-based fitness that CrossFit provides can pull people out of a funk and change people’s lives completely,” Kevin affirms to AmeriDisability.

Adaptive athlete Kevin Ogar excels at powerlifting. — *credit: Kevin Ogar via Instagram*

Created by Greg Glassman in 2000, CrossFit is a high-intensity program incorporating components of several sports to combine weight-lifting, cardio and other elements. It is now a wildly popular fitness sensation with more than 13,000 affiliated gyms (known as “boxes”) promoting “workouts of the day (WOD).”

Kevin always had a knack for athletics, including an impressive collegiate rugby career. So it was no surprise that he was dominating his way up the professional ranks of powerlifting and CrossFit. Then, a “freak lifting accident” involving a missed snatch, a move he’d conquered many times before, left the then 28-year-old competitor with a spinal cord injury. Kevin survived two complex surgeries, followed by a rehabilitative stay. Still, the life-altering event never swayed his dedication to the sport. In fact, he believes the forte he gained through CrossFit gave him a leg up on recovery.

“After I was paralyzed, I knew that CrossFit was going to bring me through the woods and help me be an independent, functional human being,” shares the now 33-year-old coach. But’s it’s done much more than that. Within a year of his injury, Kevin returned to the competitive circuit as an adaptive athlete and also opened his own gym, CrossFit WatchTower, in Englewood, Colorado. He became a Level 3 Certified CrossFit Trainer and, as spotlighted in the documentary OGAR: Will of Steel (available on Amazon Prime Video), Kevin became the first wheelchair-using member of the CrossFit Level 1 Seminar Staff. To achieve this status, he passed a grueling learning process to be deemed one of the sport’s top ‘trainers for trainers.’ And because he became a certified adaptive coach as well, Kevin now empowers both able-bodied and adaptive athletes. He says he feels fortunate that coaching (especially adaptive athletes) gives him “the ability to see someone’s physical fitness change and also their demeanor, personality and self-confidence. I wouldn’t trade this job for the world!”

Adaptive coach Kevin Ogar trains abled-bodied and adaptive athletes. — *credit: Adaptive Training Academy*

Kevin proudly proclaims that the clientele at WatchTower is more diverse than any other CrossFit gym. “I know of other gyms run by adaptive coaches, but we have anyone and everyone working out together,” he says, including wide ranges of age (early 20s to almost 70) and disabilities. “We have people who have lost a limb, loss of function, traumatic brain injury, cerebral palsy, multiple sclerosis — you name it and we work with it,” he says, adding, “No one is seen as part of the able-bodied community or adaptive community; we’re all just WatchTower members and athletes.” The gym also operates a rehab program.

Now as a busy business owner and head coach, Kevin has scaled back from competing but still loves to workout, usually up to five days a week. That doesn’t mean his joy of fitness hasn’t been tested. After being paralyzed, he had to learn how to train himself and coach others in a completely new way. “Before my accident, I was very much a visual coach. Meaning I knew how to move well and knew how to show people how to move well. After my accident, I really couldn’t ‘show’ anymore,” he acknowledges. “So, I had to really dig into and crack down on verbal cues a lot harder than before. It was challenging to put into words what I used to just demonstrate with motion.” Kevin studied with various mentors to perfect his newfound style which, he admits, is somewhat blunt yet effective.

This dog-loving jokester understands why many are seriously intimidated by CrossFit, especially those with disabilities. It’s because, in part, televised competitions highlight the extreme. “What you see in the CrossFit Games is not the basis… it’s the far end. What most people do in a CrossFit gym is for health and wellness,” he explains, just like any other exercise regime.

The Reveille Project helps restore veterans' lives post-active duty. — *credit: Reveille Project*

Somehow Kevin finds time to serve as the Vice President of The Reveille Project, a nonprofit he co-founded to grant wellness-focused guidance to veterans with mood disorders and physical disabilities working to adapt socially, emotionally, physically and spiritually back into civilian life. The program has sponsored more than 50 veterans and counting. Ironically, Kevin had no idea that he would be able to personally relate to injuries sustained by wounded warriors when the Reveille Project concept first arose (just prior to his injury). He also serves as a board member for the Adaptive Training Academy. For daily WODs designed for wheelchair users, check out WheelWOD.com.

The Drill Sergeant

Based in Phoenix, Arizona, Ability360 is one of the nation’s largest Centers for Independent Living. It’s a nonprofit organization run by people with disabilities for people with disabilities. Housed in a stunning 45,000-square foot, $13 million facility, Ability360’s inclusive Sports & Fitness Center boasts competitive sport teams, indoor courts, multiple pools, a climbing wall, an indoor jogging track and a plethora of gym equipment.

“Ability360 is a great organization because it allows differing individuals the opportunities to see where they can go,” declares 47-year-old Toni Grimes, a personal trainer empowering adaptive athletes. This gig is actually her second career. After nearly two decades of military service, including tours of duty in the Republic of Korea and Afghanistan, Toni was medically retired as a Major from the U.S. Army with lupus and PTSD. She describes the months following her release as “really bad because the lupus affected my brain and spinal cord. I had to go through a lot of therapies when I got out.”

According to the Mayo Clinic, lupus is a systemic autoimmune disease that occurs when the body’s immune system attacks its own tissues and organs. Inflammation caused by lupus can affect many different body systems, including one’s joints, skin, kidneys, blood cells, brain, heart and lungs.

Toni Grimes is trains individuals with disabilities. — *credit: Ability360*

In 2011, along with one of her survivor support groups, Toni took a tour of the then-newly opened Ability360. “I fell in love with the fitness floor. I just thought, ‘I have to be here!’” she recalls. Toni started as a volunteer and, later, joined the personal training staff. While her daily struggle with discomfort is ever-present, she knows her own disabilities positively impact her work. “Because of my own pain, I understand how difficult it can be to get up and push yourself when you are not feeling well or question your capability,” she explains. Toni attests that the state of her mental and physical health is best when she maintains an exercise regime ─ which is something she shares with her clients. Her clientele is quite diverse; for example, she’s coached a wounded warrior working to regain (and surpass) his bench press goals, a blind senior who had never stepped foot in a gym to lift weights before and an elite adaptive athlete training for and landing a spot on a national team.

Appropriately descriptive, Toni says her coaching style is adaptive. Some clients need a cheerleader and others need a drill sergeant. She has the refined skills to quickly grasp a situation and provide proper direction. Recently inducted into the Arizona Veterans Hall of Fame Society, Toni works tirelessly as a disability advocate in both her professional and personal life.

The Dancing Queen

Zumba integrates upbeat aerobic dancing and music and, so, 36-year-old Carina A. Ortiz Toro of Lajas, Puerto Rico says she knew it was the best exercise for her. “It has all the things that I love,” she explains. She reluctantly started taking Zumba classes in 2013 and found that she typically was the only participant in the room working up a sweat from a seated (wheelchair) position.

Carina has spina bifida, a condition that affects the spine and is usually apparent at birth, according to the Centers for Disease Control. It is a type of neural tube defect that occurs when the neural tube does not close all the way.

However, fast forward three years… Carina parlayed her passion into a profession. “As of today, I’m the first (and only) wheelchair-using Zumba instructor in Puerto Rico and the Caribbean,” Carina tells AmeriDisability. Although she hopes other fitness enthusiasts with disabilities will join her for a Zumba class or even on the teaching platform. “Figure out your difficulties and skills. Don’t let your difficulties top your skills! Try everything… if it doesn’t work the way you expect it, try a different way until you find what fits for you,” she urges. For Carina, who leads both able-bodied and disabled participants, that includes a combination of verbal cues and physical demonstrations.

Wheelchair users can participate in Zumba — *credit: Carina A. Ortiz Toro*

She admits that she prefers to instruct individuals with disabilities because offering inspiration to others is a personal motivator. “Zumba is a great way for people in wheelchairs to get agile, have balance in their torso and strengthen the upper body,” she explains, all within an energetic and enjoyable environment. To locate one of her classes, visit Carina’s Facebook page.

Becoming a Trainer

For information about becoming a personal trainer, visit:

Adaptive Training Academy
American Council of Exercise
American College of Sports Medicine (and ACSM’s Certified Inclusive Fitness Trainer)
CrossFit (and CrossFit’s adaptive coaching); and Crossroads, an adaptive athletic alliance
National Center on Health, Physical Activity and Disability

Finding a Trainer

If you have a disability and are seeking a qualified trainer, consider these questions:

Is the trainer certified?
Does the trainer have a specialty certification, such as adaptive training?
Does the trainer have experience coaching adaptive athletes with your particular disability?
Does the trainer have professional liability coverage?

What is your favorite form of exercise Share with AmeriDisability on Facebook and Twitter.

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Nancy DeVault is an award-winning writer/editor contributing to local and national publications. Her storytelling spans a wide range of topics, including charity, disability, food, health, lifestyle, parenting, relationships and travel. Married with two kiddos, Nancy describes herself as a lover of the outdoors, fitness, news, traveling and binge reading magazines while sipping coffee.

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Feature photo credit: The Reveille Project

3D Accessible Parking Effort to Create a More Mobility Inclusive Society

Travel

Staff Writer

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September 25, 2019

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3D Accessible Parking Effort to Create a More Mobility Inclusive Society

BraunAbility, in partnership with multiple mobility dealership locations across the U.S., is installing 3D accessible parking designs to combat illegal parking in spaces designated for those with mobility disabilities. The 3D access aisles are installed in parking lots of businesses that sell mobility products, including BraunAbility wheelchair accessible vehicles.

The goal of the 3D accessible parking design is to bring attention to a significant issue faced by people who use wheelchairs, and the optical illusion of a raised barrier is designed to stop someone from parking on the access aisle, keeping it open for a wheelchair van ramp to deploy. Accessible parking abuse is rampant. In recent U.S. surveys, 74 percent of participants said they have witnessed accessible parking abuse, and 84 percent of BraunAbility customers expressed interest in taking action to prevent accessible parking abuse.

This nationwide 3D painting is part of a larger movement by BraunAbility called Drive for Inclusion. Drive for Inclusion is a first-of-its-kind initiative to gather and unify the voices of people across the mobility disability spectrum to take action for greater access and inclusion.

Mobility dealerships across the country are eager to take part in the Drive for Inclusion movement. In more ways than one, these partners help support local disability communities, and their participation in the 3D painting is one more example of their commitment to this community.

3D accessible parking can combat illegal parking.

To date, 27 access aisles have been installed, including the inaugural space in Speedway, Indiana.

People with disabilities make up the largest minority in the world, according to the United Nations, and mobility disabilities affect one in eight adults in the U.S. Yet the daily challenges faced by this group, like parking, are largely ignored by society as a whole. To create awareness of this issue, BraunAbility enlisted the talents of internationally renowned artist, Tracy Lee Stum, to redesign the access aisles found next to wheelchair van accessible parking spaces.

BraunAbility invites anyone living with a mobility disability and their caregivers to share their voices through its online survey community at www.BraunAbility.com/TheDrivingForce and provide input on obstacles they face in their daily lives and what changes could lead to greater mobility inclusion. The information gathered through The Driving Force community will be used to inform future actions, and key findings from the survey community will be released annually through the Drive for Inclusion Report Card beginning in May 2020.

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A Mother’s Harrowing Tale of Her Child’s Decline into Mental Illness – and Signs to Watch for in Your Teen or Young Adult

Kimberly Blaker

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September 24, 2019

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A Mother’s Harrowing Tale of Her Child’s Decline into Mental Illness – and Signs to Watch for in Your Teen or Young Adult

Regardless of our kids’ trials and tribulations during childhood and into the early teen years, the furthest thing from any parent’s mind is that our young adult child might develop a serious mental illness. Unfortunately, it’s an equal opportunity disease that can strike even model kids who’ve rarely experienced a difficult day in their lives. Just as kids are preparing to become independent adults is when serious mental illness (SMI) often strikes. The incurable brain diseases of schizophrenia, schizoaffective disorder and bipolar disorder combined strike one in every 25 people typically as they are entering adulthood.

My son (who I’ll call Sean) was diagnosed with schizoaffective disorder at the age of 19. This disease is the combined illnesses of schizophrenia and bipolar disorder. The first several years of his adult life were spent inside a living hell —literally. The early stage was marked primarily by delusions and paranoia: there was a government conspiracy against him, Li’l Wayne and Drake were writing derogatory songs about him, and pimps were trying to kill him. But this was only the beginning of a downward spiral.

The first year of treatment showed only mild success. Antipsychotics are relatively fast acting and, if monitored, can be quickly adjusted or changed. But with a severe shortage of psychiatric beds, lack of adequate federal and state funding for mental healthcare services, and laws as sick as those who are ill — problems that exist in every state in America — he was in and out of the hospital within days, still in psychosis. Further hindering recovery, he was allowed only one 30-minute psychiatric appointment per month despite having a severe brain disease.

There are two broader problems with treatment for the SMI in America, which are laws and funding.

Laws were created decades ago to protect the rights of seriously mentally ill individuals. But legislators didn’t take into account that those with SMI are often unaware of their illness due to a symptom called anosognosia. As a result, the SMI are most often unwilling to seek treatment.

Mental health issues can arise in young adults. — *photo credit: National Alliance on Mental Illness*

Mental hospitals have shutdown in droves in recent decades. At the same time, public funding for treatment has dwindled drastically. This has impeded the development of adequate out-patient services and housing for seriously mentally ill people.

Important to note, new research indicates episodes of psychosis may cause more damage to the brain. The lack of timely, adequate, and appropriate treatment often results in each episode becoming increasingly more severe, reducing the likelihood of recovery.

This had proven true for Sean. A year into his illness, he received a message from a game of Scrabble to cut off his ear or toe or to break a leg in order to save the world. In the middle of the night, I awakened to his blood curdling screams. He had jumped 15 feet from a tree, fracturing his back instead. Just prior to this feat, he attempted, unsuccessfully, to silence the commands. He branded his arm with a fork, a scar that remains today. He was admitted for psychiatric care, but released within seven days with little improvement.

Over the next three years, he was hospitalized with increasing frequency, always released within days. He was paranoid and lived in constant fear with the belief his family and friends wanted to kill him. He hallucinated that I said such horrific things to him as, “I’m going to chop off your head,” or “I’ll bury you alive.” He spent nights awake sitting on his bed prepared to bolt if I broke down the door to kill him.

A few years into the illness, the television told him he was Jeffrey Dahmer, and the President told him to kill me. My son isn’t violent. But statistics speak for themselves. Psychosis often leads to violent and tragic acts by those who are otherwise nonviolent. It was a several day battle to get him hospitalized. But he was released in three days in the same condition.

Finally, we got a little breather though. For a couple months, although his psychosis was still present, it had at least improved. But this often didn’t last. With Sean’s paranoia that doctors, pharmaceutical companies, and his family were trying to poison him, he often refused medication.

Soon Sean took another downturn. He couldn’t comprehend real conversations because the hallucinatory voices were so overpowering. He carried on arguments with these voices, told news anchors on the TV to shut up because they were talking about him, and was angry with the Pope for something the Pope was doing to him.

He repeatedly insisted he was traversing. As a result, there were two of him, or maybe three – and he didn’t know which was the real him. He became confused and didn’t know where he was and often pleaded with me to get him home. I’d try to reassure him, “you are the real Sean, and you are safe at home.” It was heartbreaking.

Medication is sometimes the best treatment for mental illness. — *photo credit: National Alliance on Mental Illness*

Finally, several years into my son’s illness, I was finally able to get his psychiatrist to put him on Clozapine, the gold standard for treatment resistant patients. Although Sean still experiences mild psychosis and is disabled, he’s seen remarkable improvement.

But my son and I aren’t alone. This plays out for millions of seriously mentally ill people and their families day-after-day, week-after-week, and year-after-year as loved ones spiral further into the abyss.

In recent years, legislative proposals have been introduced. There have been some very small strides in changing laws to improve the care and treatment for those with SMI. Still, there’s a long way to go to ensure appropriate and adequate treatment for all the sons, daughters, parents, and siblings in America suffering from serious mental illness — and for the countless people who in the future who will be struck by this dreadful fate.

Signs of schizophrenia to watch for in your teen or young adult child

It’s often difficult to recognize SMI developing. That’s because many symptoms of these illnesses are also typical problems associated with the teen years. There’s no cure for schizophrenia, schizoaffective disorder, or bipolar disorder. Still, recovery is possible for many with these brain diseases. But early detection is crucial to the prognosis.

Schizophrenia

With schizophrenia the symptoms usually, though not always, develop gradually over months or even a couple years. They show up as changes in behavior, thinking, and emotions.

Changes in behavior may include:

· Poor hygiene

· Talking to oneself or odd speech

· Difficulty with making or maintaining friendships

· Substance abuse

· Unusual facial or body movements

· Unblinking vacant expressions

· Difficulty picking upon social cues

· Threatening behaviors

· Increasing isolation

· Inappropriat eemotional responses like laughing at something sad.

Emotional changes are often seen in:

· Angry outbursts

· Extreme moodiness or irritability

· Severe anxiety and fearfulness.

Changes in thinking might include paranoia:

· Obsessing about the past

· Visual or auditory hallucinations

· Delusional thinking (illogical and nonsensical ideas)

· Difficulty with concentration or following a train of thought

· Trouble distinguishing dreams or television scenes from reality.

Learn the symptoms of mental illness. — *photo credit: National Alliance on Mental Illness*

Bipolar

Bipolar is a mood disorder with swings to opposite extremes. It’s believed there may be a correlation between this disease and ADHD. There are a couple forms of bipolar, one in which mania is more severe. The less extreme state is called hypomania. With bipolar, the mood swings in teens can change in the course of just a few hours or days. During adulthood the swings can last much longer, for weeks or months.

Depressive symptoms to watch for include:

· Loss of interest in activities

· Decline in grades

· Difficulty concentrating

· Prolonged sadness or irritability

· Loss of energy

· Change in sleep patterns

· Change in food intake

· Feelings of guilt or worthlessness

· No longer experiencing pleasure

· Suicidal thoughts

· Anxiety, worrying, and anger

The difference between mania and hypomania is primarily the severity of the symptom where mania is more extreme. Mania or hypomania can be seen in the following symptoms:

· Decreased need for sleep

· Elated mood to exaggerated optimism

· Increased energy

· Increased confidence

· Extreme focus on projects

· Increased physical or mental activity

· Increased creativity or productivity

· Increased libido to hypersexual thoughts and behavior

· Difficulty concentrating

· Inflated sense of self-importance

· Risk taking and reckless behavior

· Racing speech and thoughts

· Grandiose delusions

· Hallucinations.

Schizoaffective disorder

This disease has the combined symptoms of both schizophrenia and bipolar. The symptoms, therefore, can be any combination of symptoms for the two distinct diseases.

Getting help

If your child exhibits signs of SMI, be aware that counselors and therapists often don’t have the educational and medical background to diagnose or treat these specific brain diseases. Seek an evaluation at a walk-in mental health crisis center or a licensed psychiatrist. You can also consult with your family doctor who can make a referral.

For more information, visit the website of the National Alliance on Mental Illness.

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Feature image credit: National Alliance on Mental Illness

Medicare Open Enrollment: How to Save Money Next Year

Staff Writer

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September 23, 2019

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Medicare Open Enrollment: How to Save Money Next Year

‍Medicare Open Enrollment is about to kick off. For most people already enrolled in Medicare, the annual Open Enrollment period (Oct. 15 through Dec. 7) is the only opportunity to make changes to your existing Medicare coverage.

Even if you are happy with your Medicare coverage, you should take the time to explore your options. There may be a plan that is better suited to your health and financial needs that could save you hundreds of dollars in the upcoming year.

During Medicare Open Enrollment, Medicare beneficiaries can switch Part D prescription drug plans; switch Medicare Advantage plans, which offer health (and often drug) coverage through private insurers; switch from Original Medicare, administered by the federal government, to Medicare Advantage; or switch from Medicare Advantage back to Original Medicare. All changes made to coverage during Open Enrollment take effect on Jan. 1, 2020.

Dan Klein, president and CEO of the Patient Access Network (PAN) Foundation, an independent charitable organization dedicated to helping people afford out-of-pocket costs for prescribed medications, offers the following tips for navigating Medicare Open Enrollment.

1. Do your homework

Take the time to shop around and understand the benefits and costs of each plan so you can find the coverage that works best for you. Changes to your health status, doctors or other healthcare providers, prescription drugs or budget may mean that your current plan is no longer the most cost-effective choice for you. Insurance companies can also make annual changes to their plans that might affect the drugs covered, provider networks and your out-of-pocket costs.

2. Make sure your doctors and providers are in-network

Before selecting a Medicare Advantage plan, it’s smart to check that your preferred doctors, hospitals and pharmacies are in the plan’s provider network. If you visit a doctor, hospital or pharmacy that is outside of the network, you will likely have to pay more. If your insurance company has changed your plan’s provider network for next year, you may want to use Open Enrollment to switch to a plan that will include your current doctors, hospitals and pharmacies in-network to lower your medical costs. Note: With Original Medicare you can go to any doctor that accepts Medicare patients.

3. Make sure your medications are covered

Medicare Part D helps cover the cost of prescription drugs. Many Medicare Advantage plans provide prescription drug coverage as well. It’s important to ensure that your plan covers the medications you need and that the plan’s network of pharmacies makes it convenient for you to access your drugs. Switching prescription drug coverage, or even adding it for the first time, can help make the critical medical treatments you need less expensive.

You can make Medicare changes during open enrollment. — *photo credit: PAN Foundation*

4. Assess if your plan is still a good fit for your budget

Annually, there may be changes to your Medicare plan that affect your out-of-pocket costs. Out-of-pocket costs are your expenses for medical care that aren’t reimbursed by insurance. When selecting a plan, you should consider what you will be responsible for paying under the plan, including the deductible, out-of-pocket limit, co-pays and co-insurance. Also, if you are enrolled in Original Medicare and do not already have supplemental coverage, now may be a good time to consider purchasing a Medigap plan.

5. Determine how you will pay for your out-of-pocket costs

With rising deductibles, premiums, co-pays and co-insurance, the inability to pay is a growing problem for people with Medicare. There may be assistance available to you if you cannot afford the out-of-pocket costs for your prescription medications. You should research your options now.

If you have limited income and resources, you may qualify for a federal Medicare Low Income Subsidy (LIS) – also known as Extra Help – to help pay for your prescription drug costs. You may also be eligible for a patient assistance program that provides people with financial assistance to cover out-of-pocket costs for their medical treatments. You can learn more about PAN and patient assistance charities by visiting PANFoundation.org. Other helpful online resources are available at:

By taking the time to re-evaluate your existing coverage and learn about all the options, you may be able to save significantly on your healthcare costs next year.

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Looking for similar content? You may like “How to Pay for Senior Living.”

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In-Utero Surgery Improves Outcomes for Babies with Spina Bifida

Health

Nancy DeVault

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September 20, 2019

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In-Utero Surgery Improves Outcomes for Babies with Spina Bifida

Twenty-three weeks into her pregnancy, 26-year-old Jessica Trinkle hoped to catch a sweet glimpse of her baby during a routine ultrasound. During the anatomy scan, however, her obstetrician noticed that Jessica’s unborn son, Parker, had a lesion on his spine. After further testing, Parker was diagnosed with spina bifida, a type of neural tube defect that occurs when a baby’s neural tube fails to develop or close properly, as defined by the Spina Bifida Association.

What is Spina Bifida?

The exact cause of spina bifida isn’t clear; though experts believe genetic and environmental factors, such as a family history of neural tube defects and folate deficiency, play a role. Spina bifida occurs in the early stages of pregnancy and the severity can range from mild to severe ─ impacting one’s physical and mental condition ─ depending on the size and location of the opening. It’s estimated that about 166,000 people in the U.S. live with spina bifida.

A Backbone of Hope

Looking to educate herself about spina bifida, Jessica discovered an online support group comprised of fellow mothers and learned about maternal-fetal surgery. While surgery is not a cure for spina bifida, research finds that this prenatal intervention can achieve significantly better outcomes than traditional postnatal repair. Favorable results outlined in the Management of Myelomeningocele Study, known as the MOMS Trial, found that fetal surgery greatly reduces the need for a spinal shunt at birth and improves the child’s mobility and leg function.

spina bifida surgery gives better outcomes — *Dr. Elbabaa performs fetal surgery. (photo credit: Orlando Health)*

While the surgery is complex, the decision was a no brainer for the Trinkles. “We were looking for a proactive way to best benefit his quality of life,” Jessica tells AmeriDisability. Because spinal cord damage is progressive during gestation, prenatal repair of myelomeningocele, the most common and severe form of spina bifida (which occurs in approximately 4-in-10,000 live births in the U.S.), may prevent further damage.

Currently, there are only 13 fetal surgery centers in the U.S. that perform this kind of procedure. Luckily, one had just opened about two hours away from the Trinkle’s home in Palm Coast. The first and only hospital in the state of Florida to offer the innovative approach, Orlando Health officially launched its open fetal surgery program in May 2018, in conjunction with its sister site Winnie Palmer Hospital for Women & Babies. In about a year’s time, Orlando Health worked 11 cases (Jessica and Parker were the program’s fourth).

The fetal surgery program at Orlando Health began with the recruitment of Samer Elbabaa, MD, a pediatric neurosurgeon who has performed more than 75 of these intricate procedures in his career. “At Winnie Palmer Hospital, we see an average of 14,000 births a year and this program is truly meeting an important need here in Central Florida and across the state,” said Dr. Samer Elbabaa. Because the delicate surgery actually involves two patients – the expectant mother and her unborn baby – a comprehensive team works closely together to open the uterus and close the defect on the baby’s spine. Jessica says her surgery included a crew of about 13 doctors and nurses, who made a 10-inch incision into her abdomen, followed by a 5-inch incision into the uterus.

Dr. Elbabaa, neurosurgeon — *Dr. Samer Elbabaa is the medical director of pediatric neurosurgery at Orlando Health. He is considered one of the most experienced fetal neurosurgeons worldwide. (photo credit: Orlando Health)*

Surgical Criteria

Spina bifida screenings are common practice in prenatal care. Many cases of spina bifida are suspected based on a blood test, and further evaluated via ultrasound around 18-20 weeks for diagnosis confirmation. “The inclusion criteria is basically a mother and fetus that are overall healthy, except for a severe spina bifida defect,” Dr. Elbabaa tells AmeriDisability. There are several specific qualifiers, for example, “the level of the spina bifida has to be between T1 and S1, basically mostly in the thoracic/lumbar region; and the fetus has to show evidence that the spina bifida already impacted the anatomy of the brain causing the condition called high brain or Chiari malformation. The base of the skull becomes crowded because of the spina bifida in the lower back, so we attempt to close the spina bifida early to reverse some of this abnormal anatomy,” Dr. Elbabaa explains.

Generally speaking, Dr. Elbabaa says the majority of referred mothers and children do qualify. Jessica says she underwent psychological evaluations, genetic counseling, blood work, an amniocentesis and was required to have a post-surgery support system. The in-utero surgery typically is conducted between 19 and 26 weeks of pregnancy. According to Orlando Health, there is less evidence for improvement in the child’s condition if the surgery is performed after 26 weeks. Following the surgical intervention, expectant mothers usually are hospitalized for several days and remain on modified bedrest for weeks to limit the risk of preterm labor. According to the MOMS Trial, the best case scenario is to keep the mother pregnant until 37 weeks, however the surgery is considered successful if she delivers after 30 weeks. In half of the cases in the MOMS Trial, the mothers’ water broke early and delivered closer to 34 weeks.

Baby thrives after spina bifida surgery — *Parker was the fourth patient to undergo fetal surgery for spina bifida at Orlando Health. (photo credit: Jessica Trinkle)*

Twice the Joy

Because deliveries are via C-section, the baby is miraculously considered “twice born.” Jessica and her husband, Spenser, welcomed Parker (at a healthy 5-lb., 5-oz.) on February 6, 2019 (at 37 weeks), joining his big sister, 3-year-old Aria. Jessica says she is certain the surgery was the right medical decision. Parker was the first baby born at Orlando Health with spina bifida to bypass the NICU. “Parker’s lesion opening starts at L1 and goes down. He functions as if it was at an L4 or L5 level [thanks to the surgery]. So he is able to move his hips and knees just fine and we’re working on ankle and foot movement,” Jessica describes.

Spina bifida is a life-long condition and, following surgery, Orlando Health advises families to continue working with a multidisciplinary team of pediatric specialists, including neurosurgery, orthopedics, urology, gastroenterology and rehabilitation as well as physical, speech and occupational therapy. Parker attends physical therapy twice a week. “All of his milestones are pretty much on time,” Jessica happily reports. “He is getting fitted for his first pair of orthotics so he can start practicing weight-bearing on his feet to work on standing.”

In 2017, the American College of Obstetricians and Gynecologists issued guidelines encouraging providers to inform mother’s about surgical options. The guidelines, in part, read: Women with pregnancies complicated by fetal myelomeningocele who meet established criteria for in-utero repair should be counseled in a non-directive fashion regarding all management options, including the possibility of open maternal-fetal surgery.

The Trinkle family opted for fetal surgery for spina bifida with favorable outcomes. — *The Trinkle family (photo credit: EBU photography)*

This medical advancement is relatively new and, thus, postnatal repair remains the current standard of care for myelomeningocele, according to Dr. Elbabaa. However, he expects open maternal-fetal surgery to become the go-to standard for qualifying patients within the next 5 to 10 years. If you are pregnant and seeking information, review the Spina Bifida Association’s Expectant Parent’s Guide.

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Nancy DeVault is an award-winning writer/editor contributing to local and national publications. Her storytelling spans a wide range of topics, including charity, disability, food, health, lifestyle, parenting, relationships and travel. Married with two kiddos, Nancy describes herself as a lover of the outdoors, fitness, news, traveling and binge reading magazines while sipping coffee.

[Feature photo credit: EBU photography]

Businesses Named “Best Places to Work for Disability Inclusion”

Professional

Staff Writer

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September 20, 2019

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Businesses Named “Best Places to Work for Disability Inclusion”

This past summer, results from the 2019 Disability Equality Index (DEI) were unveiled by Ted Kennedy Jr., bone cancer survivor, amputee and Board Chair of the American Association of People with Disabilities (AAPD) recognizing top-scoring companies as “Best Places to Work for Disability Inclusion.” The record-breaking 180 businesses that participated in the 2019 DEI represent leaders across 28 business sectors, including financial services, technology, insurance and health care.

The Disability Equality Index (DEI) is a unique, joint initiative of Disability:IN and the American Association of People with Disabilities (AAPD). It serves as the nation’s most comprehensive annual benchmarking tool allowing America’s leading corporations to self-report their disability policies and practices. This evolving index objectively scores each corporation on a scale from 0 to 100—100 representing the most inclusive. The DEI was developed by the two national leaders in consultation with the appointed DEI Advisory Committee, a diverse and voluntary group of experts in business, policy and disability advocacy.

In its fifth year, the DEI continues to see an increase in year-over-year participation, with the number of top-scoring companies more than tripling to 156 in 2019 as compared to 43 in 2015, signaling a steady growth in disability inclusion across all industries.

“The DEI helps companies measure their own progress on disability inclusion and challenges them to improve their policies and practices – not just because it’s the right thing to do, but also because it’s also good for business,” said Ted Kennedy, Jr., disability rights attorney and board chair of AAPD. “Research shows that companies that champion disability inclusion significantly outperform their peers across key financial indices including revenue, net income, profit margins and shareholder returns. AAPD is truly impressed by this year’s DEI participation and we’re proud to collaborate with the business community to prioritize industry-wide disability inclusion practices.”

“The DEI is designed to promote and advance disability inclusion practices and policies within corporate America that lead to better employment outcomes for and inclusion of people with disabilities, as employees, customers and suppliers. When businesses include people with disabilities, everybody wins,” said Jill Houghton, President and CEO of Disability:IN.

The number of participating businesses with a disability-focused employee resource group (ERG) sponsored by a senior executive has increased from 64% to 86%. As of 2019, 93% of businesses audit their public-facing websites for accessibility, compared to just 57% one year ago. These participating businesses represent over 8.6 million employees, 3.7% of which self-identify as having a disability.

The comprehensive efforts of participating DEI businesses highlight trends within industries and opportunities for improvement.

Indicators of commitment to disability inclusion:

93% of companies report having a senior executive who is recognized internally as being a person with a disability and/or as an ally for the community.
84% of companies have a company-wide written statement of commitment to diversity and inclusion that specifically mentions disability.
92% of businesses encourage employees with a disability to self-identify, and 95% have a confidential process that allows them to do so.

Opportunities for disability inclusion improvement:

While 93% of businesses utilize a company-wide engagement survey, only 36% review the survey results for employees who have identified as having a disability.
Only 54% of businesses have a diversity council that specifically recognizes disability inclusion as an area of focus.
Just 30% of businesses have company-wide disability-focused goals in place for supplier inclusion and diversity.

The 2019 DEI Report dives deeper into the insights of the 2019 DEI results and can be accessed here: DisabilityIN.org/DEIReport2019.

Companies can register for the 2020 DEI at https://www.disabilityequalityindex.org/register.

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Looking for similar content? Check out “Create an Accessible Workspace with these Disability-Friendly Pieces.”