Many people with disabilities are at increased risk of serious or fatal complications from COVID-19 (coronavirus). In an active community outbreak, the safest option may be to self-isolate at home, perhaps for weeks or longer. In order to prepare for this possibility, the CDC is currently recommending that people at high risk stock up on necessities, including maintenance prescription medication.
Unfortunately, many people with disabilities can’t take this advice because of insurance restrictions. Insurers typically refuse to cover refills on 30-day prescriptions until only three to seven days of medication remain. For certain controlled substance prescriptions, patients may be legally unable to fill a new prescription until the date that the previous prescription is scheduled to run out.
These coverage restrictions could leave many disabled people in danger. Visiting the pharmacy can be risky for some people with chronic illnesses in even a normal flu season. Some people with disabilities may also face logistical challenges in getting to the pharmacy if in-home support services become disrupted due to a local COVID-19 outbreak.
While many people can use mail order pharmacies to avoid this risk, localized outbreaks and social distancing measures may disrupt supply chains. We cannot stake our lives on the assumption that the availability of medications will remain stable in the coming weeks and months. We need to be able to stock up now, as the CDC recommends.
Disrupting treatment always endangers patients, but even more so in a pandemic. COVID-19 is expected to heavily tax the resources of the health care system. The need for inpatient treatment will likely exceed capacity in many communities. Even outpatient clinics are likely to have a high number of patients seeking treatment for COVID-19 symptoms, making avoidable visits risky for those more vulnerable to complications. Additionally, patients whose chronic conditions are destabilized are in danger of becoming more severely ill if they are infected with COVID-19.
Fortunately, a few insurance companies have taken measures to protect patients. In both Massachusetts and North Carolina, Blue Cross Blue Shield has waived early refill limits on 30-day maintenance prescriptions. Recognizing that most of us cannot simply wait for our insurers to behave responsibly, the Washington state insurance commissioner issued an emergency order requiring insurers operating in the state to cover early refills. On March 10th, the Center for Medicare and Medicaid Services issued guidance to Medicare Part D plans reminding them of their ability to relax restrictions on early refills and lift barriers to obtaining prescriptions from out-of-network pharmacies.
While these emergency policies still fail to provide sufficient protection for many people with disabilities taking prescribed controlled substances, they offer significantly more protection than the status quo.
To further safeguard access to treatment, there are some additional changes beyond allowing for early refills to standard insurance policy practices that would be beneficial. These include relaxing restrictions on prescription fills at out-of-network pharmacies and offering coverage of non-formulary drugs if supply chain issues leave patients with no available formulary options. Widespread adoption of such policies would go a long way toward protecting the lives of people with disabilities in the COVID-19 crisis.
Now is the time to reach out to your state’s insurance Commissioner to urge them to follow Washington State’s lead in requiring early refills and to take other measures designed to ensure at-risk populations are able to follow the CDC’s guidance. We’ve prepared a template for advocacy organizations to use to urge their state’s insurance commissioner to take these common-sense measures to protect those most at-risk.
While many states have already required insurers to cover COVID-19 testing and treatment without cost-sharing, insufficient action has been taken to ensure that people with disabilities have access to early refills sufficient to comply with CDC guidance.
You can download our template at this link and adapt it to your organization’s needs. These measures will work best if they are undertaken before an active community outbreak in your area. Since our community includes many of those who are most at risk from COVID-19, we urge disability advocacy groups to make this an area of focus in the coming days and weeks.
If your organization is engaged in advocacy on protecting people with disabilities from COVID-19 or if you have been successful at securing action from your state government, we urge you to share details of that through this form. AAPD will be maintaining a page keeping track of advocacy efforts and policy measures to protect the disability community for the duration of the crisis.
Ari Ne’eman is a Visiting Scholar at the Lurie Institute for Disability Policy at Brandeis and a PhD student in Health Policy at Harvard University. He is a member of the AAPD Board of Directors.
Kit Albrecht is a Research Associate at the Association for Autistic Community.
Vans is taking a big step forward for the autism community with its latest release of sensory-inclusive footwear.
On Wednesday, the popular shoe brand announced that they would be launching the Vans Autism Awareness Collection, a line of “ultra-comfortable” footwear designed specifically with Autism Spectrum Disorder in mind, according to the company’s press release.
The shoewear brand partnered with the International Board of Credentialing and Continuing Education Standards to create shoes with “sensory-inclusive elements,” including a calming color palette of blues and greens, and design features that focus on the senses of touch, sight and sound.
The collection — which will be available this month ahead of Autism Awareness Month in April — will donate a minimum of $100,000 of its proceeds to the A.skate Foundation, a non-profit that introduces skateboarding to kids with autism.
The line will feature multiple sneaker options including the ComfyCush Old Skool with blue suede, the ComfyCush Slip-On for easy wearing and the ComfyCush New Skool, featuring a single-strap, hook-and-loop closure.
While the ComfyCush Old Skool and ComfyCush Slip-On PT — available in two colors of checkerboard — are available in all sizes, the ComfyCush Slip-On PT with the “LOVE” print and hologram pattern, as well as the ComfyCush New Skool, will only be made in kids and toddler sizes.
An assortment of short and long sleeve tees for kids in the same calming color palette will also be a part of the collection.
“Since 1966, Vans has stood as a champion of individuality and self-expression,” the release states. “The brand’s commitment continues with the release of sensory inclusive footwear designs as part of the Autism Awareness Collection.”
Parents who saw news of the launch on Twitter couldn’t help but share their appreciation for the inclusive collection.
“My son Logan is 8 years old and was diagnosed on the Autism Spectrum at 3,” one user wrote. “He has limited expressive language and has always struggled with shoes. As he has gotten older it has been more difficult to find either Velcro or slid on shoes. Thank you for thinking of this population!”
Continue on to People to read the complete article.
Reality TV producer Jonathan Murray pledged $1.1 million to the organization RespectAbility, a group that offers behind-the-camera training to people with disabilities. A portion of his donation will help fund the org’s summer lab program.
Murry and his partner Harvey Reese made the announcement at an event held in their home on Wednesday. RespectAbility president Jennifer Laszlo Mizrahi praised the two men and their Murray-Reese Foundation as “the glue for our Hollywood operation.”
She also outlined RespectAbility’s three goals: To fight the stigma of disability by promoting authentic and accurate portrayals in the media; to influence public policy, especially in the areas of education, jobs civic engagement and access; and to promote authentic talent, while creating a pipeline for people with disabilities to get more opportunities.
Lauren Appelbaum, VP of communications for RespectAbility, said the upcoming summer lab will help people with disabilities gain access to studios, networks and production companies. Last year’s work saw five participants land jobs.
Murray, a RespectAbility board member, established himself as a TV powerhouse at Bunim Murray Productions, which created long-running shows like “The Real World” and “Road Rules.” The company added people with disabilities in some series, while others, including “Born This Way” and “Deaf Out Loud,” focused entirely on the community.
A few dozen industry reps were invited to the Wednesday gathering, which Murray opened cheekily by saying, “Welcome to the last social gathering of 2020,” a reference to the slew of industry events canceled due to coronavirus. Murray said his commitment to people with disabilities is not because he’s a goody-two-shoes, “I realized that there were great stories out there that weren’t being told, and a goal is to get people to talk about disabilities when they’re talking about inclusion.”
He said often characters with disabilities are written by able-bodied people, and their work is commendable, but “What are we missing?” One of his goals is to get Hollywood to let people with disabilities tell their own stories.
Mizrahi emphasized that Murray’s contribution is a multi-year commitment, meaning the donations from him and matching donors are guaranteed for five years. The commitment is especially important now when all non-profits are going to feel a financial pinch from the economic effect of the coronavirus.
The upcoming summer lab will accept up to 30 participants. The deadline for applying is April 3, and applications can be submitted at respectability.org.
Photo Credit: Photo by Michael Buckner/Variety/Shutterstock
Continue on to read the complete article originally posted on Variety.
Lee Kuxhaus spent years in medical school on an Air Force scholarship with dreams of becoming a doctor. In 2000, the 34-year-old Green Bay, Wisconsin native made her dreams a reality when she graduated and enlisted as an active duty Air Force flight doctor specializing in radiology. Kuxhaus served two deployments where she was responsible for the medical treatment of fliers, flight mechanics and chiefs.
In July 2011, while still on active duty and stationed in Alaska at Elmendorf Air Force Base, Kuxhaus became gravely ill, seemingly out of nowhere.
“I was getting ready for work and not feeling well but brushed it off as dehydration,” the mother of four recalls. “My husband remembers me lying on the floor to put on my uniform, but since we were undermanned at work, I went in for my shift anyway.”
When she attempted to read an X-ray that morning and couldn’t focus, she knew something was seriously wrong and went to the emergency room.
Tests showed Kuxhaus was in multi-system organ failure. She was immediately admitted, administered a breathing tube and was quickly losing feeling in her extremities as her blood was going directly to her failing organs.
Doctors determined Group A Strep, a bacterium that normally causes strep throat, was the cause of her worsening condition. In a rare circumstance, the bacterium resulted in sepsis and necrotizing fasciitis—a flesh-eating disease.
In the coming weeks, Kuxhaus underwent dialysis, platelet infusion and surgical “washouts” to prevent infections.
“My condition was critical and at one point, doctors told my husband they thought they might lose me within hours,” she recounts. To make matters worse, she also experienced serious complications—one with a 75 percent mortality rate.
However, by mid-August 2011 after a two-month hospital stay, Kuxhaus was released but her recovery was far from over. For two years afterward, she continued outpatient rehab and attempted limb salvage as she experienced residual effects of blood loss to her extremities, specifically her feet and right hand. Her surgeon recommended amputation in stages beginning with the toes, then forefoot and ultimately a below-the-knee amputation in 2013.
For most people, a planned, below-the-knee amputation requires a four-day hospital stay. For Kuxhaus, four days turned into eight weeks after getting an infection near the bone.
With the many issues she dealt with, re-learning to walk using a prosthetic was not easy. After years of attempts—becoming mentally frustrated that all her focus in rehab was on walking—she took a year off from using a prosthetic and decided to just have fun, even if that meant using a wheelchair.
“For four years during my grueling recovery I never had fun and it took a toll on my mental state,” recalls Kuxhaus. “I wanted to live again.”
In her year off she tried out adaptive sports with a friend, including hand cycling and swimming to a wheelchair triathlon.
“It gave me a sense of normalcy and drastically improved my mindset, which I badly needed,” said Kuxhaus, adding that after her year off she gave walking another shot and succeeded.
In April 2018, Kuxhaus was put in touch with the Adaptive Training Foundation (ATF), a non-profit organization that helps those with physical disabilities transform their lives through exercise and community. It was there that she decided to focus her efforts on regaining strength in her legs and training to run again.
“I went into ATF thinking I was fine and was holding it together pretty well, but in reality, myself and many others were holding it together only by strings,” Kuxhaus said. “ATF’s training not only pushes our limits physically, but also mentally. Their mind, body, spirit approach gave me the tools I needed to accomplish my goal.”
Since working with ATF, Kuxhaus has completed several 5K and 10K races and attempted a half marathon. She is now a Para Skeleton athlete and took Silver in the First American National Championships last year. Kuxhaus’ sights are set on jogging next, but above all she just wants to be in the best shape possible to hike or run anywhere she wishes.
“Despite my struggles, I’m proud I was able to keep a positive attitude throughout it all,” she said. “I taught my family and children that it’s possible to overcome the most difficult situations, embraced my new normal and came out on the other side a changed person, but a much better me.”
The remarkable story of this blind piano prodigy is now helping scientists to better understand the human brain.
Matthew Whitaker has been blind since birth. His parents were told that he only had a 50% chance of survival, and he underwent 11 surgeries before he was even two years old.
Despite being faced with these grim odds, he survived his prognosis. Not only that, he exhibited an extraordinary gift for playing the piano since before he could even walk; by the time he was 3 years old, he was playing two-handed piano compositions and writing his own songs without ever having a teacher.
The piano prodigy from Hackensack, New Jersey can now play anything he hears—from Dvorak to Beyonce, his repertoire is immense and fluid.
Dalia Sakas, the director of New York’s Filomen M. D’Agostino Greenberg Music School for the Visually Impaired, recalls the moment she decided to take Matthew on as a student when he was five years old, making him the youngest person to ever attend the school.
“I was performing a couple of recitals and the Dvorak Piano Quintet is a piece actually for a piano and string quartet. So there’s five of us,” Sakas told CBS reporters. “So Matt and his mom came to hear, you know, the night I played. He comes in Saturday morning. I walk into the studio and he’s playing the opening of the Dvorak Quintet.”
One day after hearing it at the recital, Whitaker was playing this difficult piece of music by ear—all five parts, usually performed by five different people, at the same time.
Now only 18 years old, Whitaker has since toured around the world, headlined prestigious venues from Carnegie Hall to the Kennedy Center, and won a number of music awards.
Such is the height of Whitaker’s talent that he caught the attention of Dr. Charles Limb, a neurologist who also happens to be a fellow musician. Dr. Limb was fascinated by what might’ve been going on inside Whitaker’s brain, so with the permission of the musician and his family, Whitaker underwent two MRI exams—first while being exposed to different stimuli, including music, and then while he played on a keyboard.
What Dr. Limb was surprised to find was that Whitaker’s brain seemed to have repurposed its own disused visual cortex in order to build other neurological pathways. Even when Whitaker was simply listening to one of his favorite bands, his entire visual cortex lit up.
“It seems like his brain is taking that part of the tissue that’s not being stimulated by sight and using it … to perceive music,” Limb told CBS News for the 60 Minutes interview. “It’s sort of borrowing that part of the brain and rewiring it to help him hear music.
When Dr. Limb presented Whitaker with his brain scans showing how his brain lit up when he listened to music, the musician was amazed.
“I didn’t even know that that was happening,” Whitaker said. When asked about why he thought his brain was illuminated in such a way, he simply said “I love music.”
“‘Hey, you’re definitely doing this one. It’s probably the coolest thing you’ve ever done.'” That what Madison de Rozario’s manager said when he told her she was going to be Barbie’s 2020 “Shero” doll.
“It’s surreal,” the Paralympian told Women’s Health. “It’s amazing. I think younger me would have never believed it. That I, personally, would be a doll. But that someone that looks like me, would be so visible. So, honestly, it really is an amazing, amazing experience. The whole thing.”
de Rozario worked closely with the Barbie team to create her likeness, which features her iconic shock of platinum hair and top knot, racing wheelchair and palm guards.
“It was a lot of communication at first, just trying to like get the doll perfect,” she said. “You know, with the race chair and all the measurements, and then the actual doll and all the features.”
The Olympian follows the likes of Bindi Irwin, Ita Buttrose and over 50 other incredible role models in their field who have been immortalised in one-of-a-kind, figurine form to inspire limitless potential in every young girl.
Despite being considered one of the best in the world at wheelchair racing – she won two silver medals at the 2016 Rio Paralympics, two gold medals at the Commonwealth Games for the 1500m T54 final and marathon T54, became the first Aussie to win the women’s wheelchair race at the London Marathon, and equalled the world record for the 1500m T53-54 at the World Para Athletics Grand Prix – she says the title of role model is something de Rozario has had to grow into.
“I think it’s something that took me a little while to come to terms with,” the 26-year-old said. “I think if you are representing an under-represented community, you need to do a really, dang good job of it. And that’s a big responsibility.”
de Rozario says that although she was shocked at first by the reach and impact she could have, it’s now the most important part of what she does.
“It’s more than the sport and the individual accomplishment. It’s about what I can do with this platform that the sport has helped build and Barbie is helping me to have an even bigger base to spread that message. I’m grateful for it now.”
Growing up without seeing herself reflected in toys and popular culture, this process has been particularly important for de Rozario.
“Making sure that girls are seeing themselves reflected every time… that you can have a doll that looks like you growing up. I think that’s so important that you can be anything, and if you can see it, you can be it. And I think that’s exactly what Barbie has been pushing and they’re doing the most authentic job of it I’ve ever seen.”
de Rozario also highlights that moving in the direction of visibility over representation is critical.
Michael Sunday is delighted, if a little stunned, as he admires his new right hand: a silicone glove-like prosthetic meant to help him return to normal life after he lost three fingers in a car accident a year ago.
The prosthetic has a hyper-realistic feel and, unusually, is dark in color, matching perfectly the tone of Sunday’s skin.
Most fake body parts available in Nigeria until now have been white, or made from materials such as wood that also look unrealistic.
“Wow, this is lovely,” Sunday said, his voice choked with emotion, as he looked at the prosthetic for the first time.
“I have my fingers back,” said the 22-year-old student, who lost the thumb and fourth and fifth fingers on his right hand when the car he was riding in with his parents on Dec. 31, 2018, collided with another vehicle.
The artist behind the creation is John Amanam, a 32-year-old former movie special effects expert. He developed an interest in prosthetics after a family member lost a limb in an accident.
“I became emotional about amputees,” said Amanam, who is also Nigerian.
“They had this feeling of discomfort whenever they were around other people. I saw it as a challenge. If I could give back or solve this need, it would go a long way to ease that emotional trauma and loss of confidence,” he added.
“I just want them to feel at home and be whole, aesthetically.”
So he started making prosthetic fingers, hands, arms, legs and ears in 2017. Depending on the size and complexity of the prosthetic, it takes three weeks to two months to make one.
Amanam has no formal training in making prosthetics but studied sculpting as an art student. The pieces are sold for at least 40,000 naira ($111).
His company, Immortal Cosmetic Art, is part of a growing services industry that has helped Nigeria’s economy become the biggest in Africa.
Amanam said mismatched skin tone makes it more difficult for people to feel confident with their artificial limbs.
To prepare Sunday’s hand, he took measurements, made a plaster cast and mixed paints on a palette, as any artist would, searching for the right skin tone. The result was lifelike.
“You rarely find people with black skin prosthetics,” Amanam said. “I want this need to be met within Africa. I want to reach out to blacks all over the world as well, by making this process accessible, at an affordable rate.”
Continue on to Reuters to read the complete article.
HILLSBOROUGH, N.J. — Six years ago, a parent reached out to Karen Briegs to see if she could place her daughter with severe autism into a Girl Scout troop. At the time, there wasn’t a troop that could accommodate her needs.
“I had been thinking about starting a troop for girls with special needs ever since then. My own girls have gone through scouts and are now older,” Briegs said. “I just have felt there is not enough attention paid to this need in the community.”
Now Hillsborough Troop #60561 is filling that need.
The parent who was trying to sign her daughter up was Kathy Kafka, who is now the co-troop leader. The two reconnected recently and teamed up to create a troop for girls with cognitive needs.
“I loved being a Girl Scout, and when Maya was in first grade I wanted her to socialize as much as possible and so I thought of signing her up,” Kafka said. “And although it didn’t work out at first I think everything has worked out in the long run.”
The troop currently has three members — a number Briegs and Kafka say they hope will grow to about five or eight to start. Because each girl has specific needs, they are still working on creating a program that will best serve everyone.
Two of the girls in the troop are nonverbal, which means Briegs and Kafka have had to get creative when teaching the girls how to sing traditional songs. Since the girls cannot sing along they play musical instruments to the beat of the song.
“We’re trying to give them as traditional a Girl Scout experience as we can. Some of it is going to work for them, some of its not,” Briegs said.
The troop holds its meeting at GiGi’s Playhouse, a nonprofit that works with children with Down syndrome. The girls spend their meeting time doing as many traditional scouting activities as they can, learning the Girl Scout promise and law, making s’mores, doing arts and crafts and working on service projects.
The girls just finished making animal beds for a local shelter. They will be visiting the shelter to drop off their donations and learning more about how to take care of animals.
The troop will also be participating in one of the Girl Scouts’ most iconic traditions, selling Girl Scout cookies. The girls will be sharing a cookie booth with a neighboring troop in the upcoming weeks, to learn about money management and interacting with their communities.
Briegs and Kafka want to join in with other troops as much as possible so that their girls and girls who are neurotypical can learn from each other.
Prince Harry is collaborating on a new project with singer Jon Bon Jovi, potentially singing, for the upcoming Invictus Games for wounded soldiers.
Bon Jovi’s new recording of “Unbroken” is set to be released next month and will be on his new album, according to NBC’s “Today.”
“I had written a song that was important for what we’re doing,” Bon Jovi told NBC. “I just sent him a letter. I don’t know Harry, but he embraces my idea.”
The song was written for veterans living with post-traumatic stress syndrome, and Prince Harry’s Invictus Games feature wounded veterans competing in events such as wheelchair basketball, sitting volleyball, and indoor rowing.
The song will feature the Invictus choir made up of participants, and might even include Prince Harry signing – aka, “the artist formerly known as prince,” Bon Jovi told NBC.
Asked “can Harry sing,” Bon Jovi responded: “You’ll have to wait and find out.”
The Invictus Games is where Prince Harry introduced his then-girl friend Meghan Markle three years ago.
Photo Credit: TOLGA AKMEN/AFP via Getty Images
Continue on to NewsMax to read the complete article.