Adaptive Coaches Fiercely Flex the Limits of Fitness Training

Nancy DeVault

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September 25, 2019

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.”

Bootifully Adaptive Halloween Costumes for Trick-or-Treaters of All Abilities

Fashion & Beauty

Emily McDeed

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September 17, 2019

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Bootifully Adaptive Halloween Costumes for Trick-or-Treaters of All Abilities

Tricks aside, Halloween is full of treats. Haunted houses, spooky corn mazes, pumpkin spice galore and, of course, candy, candy and more candy! But, let’s be honest, the most thrilling part of celebrating All Hallow’s Eve is the costumes. For just one night annually, trick-or-treaters can dress up as anything their hearts desire. For people with disabilities, however, shopping for adaptive Halloween costumes can be a little daunting, right?

Well, here’s some “boo-tiful” news… adaptive Halloween costumes have become much more accessible. In fact, Target recently released adaptive costumes by Hyde and EEK! Boutique, available online only. The line proved to be wildly popular and Target quickly sold out of select Hyde and EEK! Boutique items. “We’re amazed and truly humbled by our guests’ initial response,” Julie Guggemos,Target’s senior vice president of Owned Brand Management and Product Design, said in a press statement. “And our team’s moving fast to restock before Halloween so more families can get in on the fun.”

This isn’t Target’s first shot at adaptive clothing. In August 2017, the company debuted sensory-friendly pieces within their Cat & Jack brand. The garments feature side and back snaps, zip closures, hidden openings for abdominal access and more. And, earlier this year, Target launched Pillowfort which features sensory-friendly home décor.

Adaptive Halloween Costumes Available at Target.com

1. Pirate Costume

Cost: Costume $25 | Pirate Ship $45

This Halloween option has two components: a pirate costume and a pirate ship for sailing the seas on All Hallow’s Eve. The back opening of the costume allows it to be easily accessible for wheelchair users; plus, the roomy pant openings will let your child dress the part with shoes on. The ship itself can be cut to fit many wheelchair sizes, and it stays in place with hook-and-loop closures. [photo above]

2. Princess and Carriage

Cost: Costume $20 | Carriage $45

Like the previously mentioned costume, this adaptive option is also a costume combo… but fit for royalty! With the sides of the chair displaying intricate designs, onlookers will be dazzled by the whimsical princess rolling by. It includes matching wheel covers and a crown. The dress shines a bright pink through the gray and purple carriage.

Adaptive Halloween costumes are available at Target. — *photo credit: Target*

3. Sensory-Friendly Shark

Cost: $25

You know the song… “Baby Shark…doo doo doo doo.” Along with flat seams and tag-free features, the hood, tail and fins of this sensory-friendly costume can be detached to suit your child’s special needs. The plush costume is sure to make a splash on Halloween!

4. Universal Unicorn

Cost: $25

This majestic costume is similar to the design of the Shark but, naturally, with wings and a horn. The wings can be detached if needed to let your child play more freely.

Adaptive Halloween costumes make the holiday more inclusive. — *photo credit: Target*

Homemade Adaptive Halloween Costumes

Sometimes the one-of-a-kind look you desire can only be achieved with homemade customization. Here are some homemade adaptive Halloween costume ideas:

1. Finding Nemo

Nemo, the beloved clown fish from Disney’s Finding Nemo has an impaired fin. For Nemo fans that also have limb impairments or amputated arms, check out this Nemo and Dory pair.

Halloween should be inclusive of all people. — *Photo credit:* *theonearmwondermom* *on Instagram*

2. Tigger

Everyone loves the energetic pal bouncing on his tail from Winnie the Pooh, right? Check out Josh Sundquist and his wife, Ashley. Josh, a Paralympic ski racer and motivational speaker, uses one leg as Tigger’s tail (below). He actually describes himself as a Halloween costume enthusiast; check out his other costume designs here.

*Photo credit: Josh Sundquist with his* *travel blogger* *wife, Ashley*

‍3. Steampunk X-Men

The famous team can go out in style with Professor X.

Adaptive wheelchair designs. — *Photo credit:* *James H.* on flickr

For more ideas, check out this Bored Panda article and this Halloween.com article.

Don’t Let Cost Scare You from Halloween Fun

If your child has always dreamed of an awesome wheelchair costume that’s out of your budget, applying for costume creation assistance through Magic Wheelchair, a nonprofit that makes costumes at no charge! The founder, Ryan Weimer, launched the effort in 2008 after making a pirate ship for his son who has spinal muscular atrophy.

Check out this video about Magic Wheelchair:

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Feature image credit: Target

6 Keys to the Best Possible Stroke Recovery

Health

Staff Writer

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September 16, 2019

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6 Keys to the Best Possible Stroke Recovery

Strokes change more than 795,000 lives in the United States each year.

In fact, according to the American Stroke Association, brain blockages or bleeds are one of the most common causes of disability and the fifth-leading cause of death. Starting the right rehabilitation program as soon as possible may help survivors recover better. One patient’s rehab journey might include balance, strength or mobility, while another might need speech or other therapies.

“The residual impact of a stroke can vary widely between patients in terms of deficits and severity,” said Pamela Duncan, Ph.D., F.A.H.A., American Stroke Association volunteer and professor of neurology at Wake Forest Baptist Health. “A rehabilitation program designed for you, where you need it, whether at a hospital or at home, is critical.”

For example, Jessica Alfonso was just 33 when she suffered a stroke. She credits her husband, Pablo, with saving her life – not just through the quick thinking that ensured her prompt medical care, but for being her voice as she worked to regain her ability to speak, read, walk and eat independently.

“He was with me for six weeks of inpatient rehabilitation,” Alfonso said. “Encouraging me and helping me communicate with my team while I re-learned everything. Without him, I may not have survived my stroke and I definitely wouldn’t be where I am today.”

Stroke rehabilitation is essential for recovery.

The American Stroke Association’s Together to End Stroke™ initiative, nationally sponsored by Kindred Hospital Rehabilitation Services, provides recovery tips and resources for stroke survivors and their caregivers such as:

Ask your doctor for an assessment of physical and cognitive challenges you face after a stroke and a specific plan to address each challenge.
Work with your doctor to create a plan to manage risk factors to prevent another stroke. This may include being physically active, not smoking and managing your blood pressure.
While recovery can occur years after a stroke, the most rapid recovery typically occurs during the first three months. As soon as your medical team gives the “all clear,” start your personalized rehabilitation program right away.
It is recommended by American Heart Association guidelines that patients who can tolerate and are eligible for rehab at an inpatient rehabilitation facility receive it. However, rehabilitation can happen anywhere from a formal rehabilitation facility to the comfort of your home. Ask your medical team for recommendations on the best local rehab options to maximize recovery.
Talk with your health care provider about any financial constraints, such as ability to pay for medications, so a plan can be developed to identify alternative community resources if needed.
Communicate and follow up regularly with a team of health care providers as some challenges – such as remembering medications – may not be immediately clear.

“For many survivors, your functional state prior to the stroke plays a big role in how you recover,” Duncan said. “Working with your team of loved ones and health care providers to find and stick with the best rehabilitation program for you is key.”

For more information about recovery and how to make informed decisions after a stroke, visit stroke.org/recovery.

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[family features]

5 Ways Technology is Transforming Hearing Aids

Tech

Staff Writer

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September 16, 2019

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5 Ways Technology is Transforming Hearing Aids

Around 37.5 million adults in the United States report some trouble hearing, according to the National Institutes of Health (NIH). However, it is an undertreated condition with the NIH also estimating 28.8 million adults with mild to severe hearing loss could benefit from hearing aids. Thanks to ever-evolving technology, devices that improve hearing loss are more user-friendly than ever.

Of course, today’s hearing aids help people hear better, but technology also is revolutionizing the way people use their hearing aids. For example, people can now use them like a headset to enjoy music, take calls and more, simply by streaming sound directly from their mobile devices.

If you’re considering a hearing aid for yourself or a loved one, or are just intrigued by how technology is changing the future for those who experience hearing loss, consider these five technology advancements that are helping people connect and hear better:

1) Rechargeable batteries

The tedious chore of changing hearing aid batteries is a thing of the past. Now you can have hearing aids with rechargeable batteries and portable chargers. Recharging at home is simple: an overnight charge is all they typically need to be ready again in the morning. Some models even feature batteries and chargers that can be ready to go another eight hours on just 30 minutes of charge time.

hearing aid technology — *photo credit: CDC*

2) Direct streaming from mobile devices

Until recently, only iPhone users have been able to stream music or calls directly to their hearing aids. Now, using updated Bluetooth Low Energy streaming technology, people with hearing aids, such as Beltone’s Amaze, can stream audio directly from their compatible Android device for more than 12 hours while still preserving 24 hours of battery life before a recharge is needed. Previously, hearing aids that directly streamed from Android devices have relied on classic Bluetooth, which can cut 24 hours of hearing aid battery usage in half after only 4 hours of direct streaming.

3) More natural sound

The latest microprocessing technology means hearing aids deliver a clearer, fuller and richer sound experience in any listening situation. Now users can hear the textured tones that make everything from a dinner conversation to a quick joke to a theater performance more fulfilling. Technology is also able to help people manage situational changes, make conversations and ambient noise sound more natural and allow users to choose which sounds to focus on. The hearing aids can even make automatic adjustments to account for sudden loud noises.

4) Smartphone apps make it easy

Hearing aid users can use smartphone apps to discreetly manage device functions, such as checking battery status and adjusting volume to using more advanced finetuning features that control speech focus, noise and wind filters. Some apps even offer a “find my hearing aid” feature.

hearing technology helps people with disabilities — *photo credit: CDC*

5) Tech-enabled customer care

Working with a hearing care professional is essential in treating hearing loss and maximizing the benefits of hearing aids, but it doesn’t mean you have to spend time trekking back and forth to your audiologist’s office. For example, Beltone’s Remote Care program enables users to connect directly with their hearing care professional via the HearMax app. After submitting a request, users can adjust their hearing aids with a simple tap on their phones without an office visit. To learn more, visit Beltone.com. You can also take a free online hearing test on this website.

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[Family Features]

Movie Industry Increases Prejudice Against People With Disabilities

Entertainment

Staff Writer

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September 13, 2019

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Movie Industry Increases Prejudice Against People With Disabilities

Unlike in television, where disability representation has gone up in recent years, the percentage of characters with disabilities in the top 1,200 films has hit a four-year low. Just 1.6 percent of the 4,445 speaking characters analyzed have a disability, according to the study by the USC Annenberg School for Communication and Journalism. Five of these films revolved around an underrepresented leading character with a disability and one showcased a leading character from the LGBT community.

“Including characters with disabilities does not happen by accident,” said Lauren Appelbaum, who leads RespectAbility’s Hollywood Inclusion efforts as the organization’s Vice President of Communications and author of The Hollywood Disability Inclusion Toolkit. “What we see on screen influences how we act in real life, but that is dependent on filmmakers choosing to include individuals with disabilities in diverse and accurate portrayals. Thus, when just fewer than two percent of films include speaking characters with disabilities, the disability community is pretty much erased on screen. When filmmakers choose to include characters with disabilities, they can help to remove the stigmas that currently exist about interacting with individuals with disabilities.”

Because of this, RespectAbility has been active in educating the film industry on not just why but also how to be more inclusive and accessible. The nonprofit disability inclusion organization released The Hollywood Disability Inclusion Toolkit in March 2018 and has followed up with trainings for major studios, meetings with writers’ rooms and engagement with the guilds. The Producers Guild, for example, recently published a piece in the ProducedBy magazine on how to reach, connect with and support people with disabilities. The hope is to create enough buy-in to ensure that filmmakers and writers intentionally include characters with disabilities in their work.

When the Annenberg study began tracking disability four years ago, it found 2.4 percent of speaking characters had disabilities, staying fairly consistent at 2.7 percent in 2016 and 2.5 percent in 2017. In each of those years, at least one film (two in 2015 and 2017) had proportional representation of characters with disabilities, compared to the U.S. Census information. None of the films evaluated from 2018 featured proportional representation of characters with disabilities when compared to the U.S. population.

“With more than a quarter of the U.S. population identifying as having a disability, these numbers are dismal,” Appelbaum added. “In fact, the difference between the percentage of speaking characters with disabilities and reality in the U.S. population is the largest difference in the inclusion crisis in film, at 25.6 (27.2% of U.S. population versus 1.6% of speaking characters).”

More than half of the films (58) evaluated in 2018 did not include a single character (even non-speaking role) with a disability, a four-year high. Furthermore, 83 films had no female characters with a disability. This is an increase from 2017 but on par with 2015. “You’re basically seeing the erasure of whole communities,” said Marc Choueiti, program director at the Annenberg Inclusion Initiative and one of the study’s authors.

“Entertainment contributes to our values and ideals,” RespectAbility’s President Jennifer Laszlo Mizrahi added. “With just 1.6 percent of speaking characters having disabilities in film, compared to 25 percent of American adults having a disability, we will continue to work with entertainment leaders to promote positive, accurate, diverse and inclusive media portrayals on TV and in film. Disability impacts every gender, race, age and sexual orientation. We want the film industry to understand that accurate, authentic and diverse portrayals of disability benefit everyone.”

A diverse group of individuals with both visible and nonvisible disabilities — *A diverse group with both visible and nonvisible disabilities.*

Disability Affects All

Despite the fact that people of all races, ethnicities, genders, sexual orientations, etc., have disabilities, the films evaluated in this study do not show it.

Nearly three-quarters of the characters with disabilities were male (72.5%) and 27.5% were female. Most characters with disabilities were white (63.1%), while 36.9% were from underrepresented racial/ethnic groups. Just two characters with disabilities were LGBT.

One statistic represents improvement, however. The percentage of underrepresented characters with disabilities increased 9.9 percent points compared to 2017. A corresponding decrease in white characters occurred. However, the numbers leave a lot of room for additional improvement.

“Once again, the predominant picture of characters with disabilities is one of a straight, white, male,” the study reports. “These results have remained consistent across the four years of films examined, which means that for nearly half of a decade, audiences have seen persistent under and misrepresentation of individuals with disabilities in top movies.”

Disabilities Represented

A total of nine films had a lead or co-lead character with a disability. These individuals experienced depression, dyslexia, disfigurement, blindness, heart conditions, HIV/AIDS or missing limbs. Five of these films centered on an underrepresented leading character with a disability, and one movie showcased the story of an LGBT leading character with a disability. In terms of ensemble casts, two films featured leading characters with disabilities, one male and one female, both of whom were white, and one was bisexual.

In terms of all characters with a speaking role, more than half of the characters (38) were shown to have a physical disability (55.1%), including mobility issues, amputation or severe disfigurement. Nearly one-third (30.4%) of characters have a cognitive disability, such as depression, anxiety or PTSD. And 27.5% of characters were shown with a communicative disability, such as blindness or deafness. As a character could experience a disability in more than one domain, the percentages do not total to 100%.

When looking behind the camera, there are no statistics for people with disabilities. Currently, no major production company tracks disability status for any of its employees, so the data does not yet exist.

Room for Improvement

While the statistics for characters with disabilities – as well as those who are LGBTQ – are lackluster, the overall numbers for women and people of color as leads increased in meaningful ways.

“The good news is companies are making more of an effort to be inclusive,” said Stacy L. Smith, director of the USC Annenberg Inclusion Initiative and one of the study’s authors. “We’re seeing movement. Of course, we always want it to be faster, but all of the activism and advocacy appears to be yielding results.” She added, “We’re seeing that studios are recognizing that all that mythologizing about who can lead a film or carry a film was just that — mythologizing.”

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Source: RespectAbility via PRnewswire; Feature image credit: History.com