During her decades-long television and film career, beloved actress Goldie Hawn has mastered the behaviors of many characters. And, as it turns out, the Academy Award winner’s interest in human behaviors crosses over into her personal life and philanthropic endeavors.
Hawn, now 76, shared that, had she not ventured into acting and producing, she may have explored a psychology profession. Well, nearly two decades ago, she parlayed her curiosity and commitment to understanding behaviors by establishing The Goldie Hawn Foundation. The mission centers on prioritizing mental well-being for one to achieve a happier, healthier, more balanced life at home, school and work. The initial timing of the organization, Hawn revealed, was a call-to-action response to the 9/11 tragedies, in addition to the alarming rise of anxiety, depression and suicide rates among tweens and teens.
“When I began The Goldie Hawn Foundation in 2003, I knew that I had to do something to remedy the stress and anxiety children were experiencing. Every child deserves an equal chance to thrive, and so — together with researchers, scientists and educators — I created the MindUP program,” Hawn outlines on MindUP.org.
source: Shutterstock
What is MindUP?
The not-for-profit says it’s focused on helping children develop the knowledge and tools they need to manage stress, regulate emotions and face the challenges of the 21st century with optimism, resilience and compassion.
There are currently two programs. MindUP for School and Educators rolled out first; then, to further empower youth-serving adults, came MindUP for Parents and Families. Both embody four pillars — neuroscience, social-emotional learning (SEL), positive psychology and mindful awareness — to foster the development of mental fitness and well-being of children, educators and families within educational and home-based settings.
It’s certainly a tall task but the Foundation is generating significant success in the U.S. and abroad. They report that students who experienced the MindUP program, compared to peers who did not, had significant improvements across multiple areas, such as improved attention, stress physiology (as measured by the hormone cortisol), peer ratings of kindness, pro-socialness and peer acceptance, and academics.
source: Shutterstock
Detailed studies are drilling down further on such statistics. For example, a large school district using MindUP in kindergarten classes in Southwestern Ontario, Canada found that students showed:
a reduction in behavioral problems (measured using ratings of hyperactivity, aggression, depression, attention, atypicality and withdrawal),
a reduction in externalizing problems (measured using ratings of hyperactivity, aggression and conduct problems),
a reduction in internalizing problems (measured using ratings of anxiety, depression and somatization),
an increase in adaptive skills (including measures of adaptability, functional communication, social skills and study skills), and
a reduction in executive functioning deficits (including measures of ability to initiate, plan/organize, monitor, shift attention and control emotions).
Another evaluation, following program engagement of fifth graders in the Southwestern U.S., found that students showed improvements in:
inactive (passive) on-task behaviors (for example, listening to the teacher talk, looking at the whiteboard), and
non-disruptive off-task behaviors (for example, daydreaming, not paying attention).
The children aren’t the only ones benefitting from these preventative programs. According to the Foundation, assessments found that educators who took trauma-informed training and taught MindUP in their classes experienced less burnout and embraced trauma-sensitive attitudes. Plus, compared to their peers without similar training and experience, educators who taught MindUP reported increased levels of personal accomplishment, self-efficacy and self-care.
source: Shutterstock
Preparing for Future Stressors
Many years following the Foundation’s formation, the organization found itself motivated yet again by a real-world event crisis; this time being the COVID-19 pandemic which, of course, uniquely impacted an already concerning global epidemic of childhood aggression, anxiety, depression and suicide. With students, educators and parents facing unprecedented challenges and, therefore, diverse stressors, MindUP continued to serve up solution-based tools.
For instance, MindUP partnered with Insight Timer, the world’s largest free meditation app, to deliver no-cost services for families, including short exercise routines, daily gratitude features and other “brain breaks” demonstrated to improve focus, resiliency, optimism and empathy. The services are available in several different languages.
Thus far, seven million children (and counting) have been taught MindUP in schools around the world with growing interest. Hawn has expressed the belief that the preventative MindUP programs should be in schools right now, rather than utilized as a post-crisis response strategy. That way children, educators, families and the community at large will be better equipped to mindfully navigate stressful circumstances that may come along. To learn more, or to donate to the not-for-profit, visit MindUP.org.
Hailey Bieber updated fans about her recent health scare through a candid video, titled “telling my story,” posted to her popular YouTube channel and on Instagram. During the twelve-minute clip, the 25-year-old model recounted the “scariest moment” of her life in which she suffered a Transient Ischemic Attack (TIA), often called a mini-stroke.
According to the American Stroke Association, a TIA is a temporary blockage of blood flow to the brain. While symptoms typically improve quickly, TIAs can be a precursor to a full-blown, debilitating or deadly stroke. In fact, approximately 15% of all strokes are foretold by a TIA; and about one-third of people who have a TIA then go on to have a more severe stroke within one year.
Hailey Bieber Recounts Mini-Stroke Occurrence
On March 10, 2022, Beiber says she was enjoying breakfast with her husband, singer Justin Bieber, when she experienced a “weird sensation” of tingling down her arm and numbness in her fingertips. More symptoms followed, including facial drooping and the inability to speak.
“The right side of my face started drooping, I couldn’t get a sentence out,” she calmly describes in the viral testimonial. “Immediately I thought I was having a stroke.”
At the hospital, doctors discovered that a blood clot had traveled to Beiber’s brain. The next day, additional testing revealed that she had a type of hole in her heart called a patent foramen ovale (PFO). This undiagnosed congenital defect contributed to Bieber’s TIA, as did three other factors.
Justin Bieber and Hailey Bieber | source: Shutterstock
What Stroke Risk Factors Did Hailey Bieber Have?
Bieber says three factors caused the blood clot, which traveled through the PFO up to her brain.
“One was that I just recently started birth control pills, which I should have never been on because I am somebody who suffered from migraines anyway,” she attests. “And I just did not talk to my doctor about this.” The second factor, according to her medical team, was that she recently had COVID-19 and the third was that she had also recently taken a lengthy international flight. All three of these factors happened within “a very short amount of time,” thus creating what Bieber describes as “the perfect storm.”
“The conclusion was that I had a blood clot that traveled into my heart and instead of what typically happens — when you have a small blood clot is that the heart will filter the blood clot to your lungs and your lungs will absorb it because the lungs are so big and they can handle it,” she says. “What happened with me is that my blood clot actually escaped through the flap or the hole in my heart and it traveled to my brain. And that is why I suffered a TIA.”
Bieber’s PFO was classified as a grade 5, which is the most severe level; so it needed to be addressed to help limit future complications. She underwent a procedure to close the hole between her heart chambers. Bieber has since remained on a daily regimen of blood thinners and aspirin. She says she “feels so much relief” and is grateful to all the doctors who helped treat her.
source: American Heart Association
TIA and Stroke Risk Factors and Warning Signs
The daughter of actor Stephen Baldwin, Bieber rose to fame modeling for companies like Guess, Ralph Lauren and Tommy Hilfiger. Her Instagram account has a whopping 43.6 million followers and, at press time for this article, her “telling my story” video had garnered more than 4.5 million views. Stroke is the No. 5 cause of death and a leading cause of disability in the U.S. Therefore, while we are pleased to know that Bieber is recovering well, AmeriDisability also applauds her effort to use her vast platform to educate others about PFOs, TIAs and strokes. Perhaps her experience will help save the lives of others.
Anyone can have a TIA, according to the American Stroke Association, but the risk does increase with age. If you’ve previously had a stroke, do pay careful attention to the signs of TIA, because they could signal a second stroke in your future. Some common warning signals of TIA include the sudden onset of the following:
Weakness, numbness or paralysis on one side of your body
The risk factors are smoking, cardiovascular disease, diabetes and, as with Bieber’s occurrence, blood clots called embolisms. Get help immediately if you think you (or someone you are with) could be having a TIA or stroke.
Act Fast by Remembering this Lifesaving Acronym
Here’s a simple takeaway… To spot a stroke, use the letters “F.A.S.T.”
F = Face Drooping – Does one side of the face droop or is it numb? Ask the person to smile. Is the person’s smile uneven?
A = Arm Weakness – Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?
S = Speech Difficulty – Is speech slurred?
T = Time to call 911 immediately! And, if possible, also note the time that symptoms began.
For more content like this, read these articles by AmeriDisability:
Cinco de Mayo, translating to the fifth of May, is a holiday that celebrates the Mexican army’s May 5, 1862 victory over France at the Battle of Puebla during the Franco-Mexican War, according to History.com. Surprising to some, Cinco de Mayo is actually a relatively minor holiday in Mexico; yet, within the U.S., it’s become a cherished occasion to honor Mexican culture and heritage.
Cinco De Mayo festivities can be enjoyed by people of all abilities. Here’s a round-up of upcoming disability-serving Cinco De Mayo events and celebrations:
1. Cinco De Mayo Bike Ride and Walk
When: Sunday, May 1, 2022 | 7:30 am (with staggering start times)
Where: Chester Valley Trail Parking Area, 132 Church Farm Ln., Exton, PA 19341
Event Details: This annual fundraiser benefits the Pennsylvania Center for Adapted Sports (PCAS), a registered nonprofit focused on improving the health and well-being of people with disabilities. Funds raised will help build more inclusive communities without interruption, with opportunities to invest in more state-of-the-art adapted sports equipment, launch new programs like Freedom Rows (a disabled Veterans rowing program) and keep essential disability-serving programs of PCAS operating.
The Cinco De Mayo Bike Ride and Walk is expected to bring together hundreds of cyclists, walkers and supporters to ride or walk on a beautiful course with varying distance options. Those interested can donate, fundraise and/or attend the event. Not local? That’s not a problem as virtual participation is also encouraged!
source: The Pennsylvania Center for Adapted Sports
2. Cinco De Mayo – Paraiso Tropical
When: Thursday, May 5, 2022 | 6 pm
Where: Giorgio’s Baiting Hollow, 100 Fox Hill Dr., Baiting Hollow, NY 11933
Website: riselifeservices.org
Event Details: Proceeds raised through this themed fundraiser will support RISE Life Services, a multi-service organization providing residential programs, supported apartments, clinical supports and case management services for the developmentally disabled, mentally ill and dual diagnosed adults. This ticketed evening ($100 per person) will feature a buffet dinner, cocktails, live music and much more fun.
3. Pars for Potential
When: Thursday, May 5, 2022 | 11 am – 3 pm
Where: TopGolf Alpharetta, 10900 Westside Pkway, Alpharetta, GA 30009
Website: Easterseals.com/northgeorgia
Event Details: Funds raised at this event will benefit Easterseals North Georgia and, more specifically, their efforts to provide services, resources and support to children with disabilities and other special needs, their families and the community in 44 counties across Georgia. All Pars for Potential participants will enjoy an invitation to the luncheon, a commemorative shirt, welcome bag and unlimited (non-alcoholic) refreshments.
4. Cinco De Mayo Fiesta with Partners In Play
When: Thursday, May 5, 2022 | 5 – 7 pm
Where: Palmetto Library, 923 6th St. W., Palmetto, FL 34221
Event Details: The family-friendly event combines play and learning using a Cinco De Mayo theme with sensory-friendly elements. In partnership with the Forty Carrots Family Center, which implements childhood development programs, themed early literacy materials will be showcased, in addition to sensory activities aimed at building fine motor skills, creativity and more. Additionally, a family yoga session will be led by Soar in 4.
New UC Davis MIND Institute research has identified a novel human gene linked to fetal brain development and autism spectrum disorder (ASD). The discovery also links the gene to the mother’s early prenatal vitamin use and placental oxygen levels.
In a study published February 16, 2022, in Genome Biology, the researchers used genomic sequencing to find a DNA methylation signature in the placenta of newborns eventually diagnosed with autism. This signature mark was linked to early fetal neurodevelopment.
“By taking an unbiased approach to investigating placental DNA methylation differences, we discovered a novel gene in a poorly mapped region of the genome associated with autism, ” said Janine LaSalle, lead author on the study and professor of microbiology and immunology at UC Davis Health.
ASD is a complex neurological condition linked to genetic and environmental factors. The U.S. Centers for Disease Control and Prevention (CDC) estimates that one in 44 children are diagnosed with ASD. It is much more prevalent in males than females.
Janine LaSalle, lead author on the study and professor of microbiology and immunology at UC Davis Health
Why studying the placenta is important
The placenta supports fetal development in the uterus. It regulates oxygen supply and metabolism and provides hormones and neurotransmitters critical for the fetus’ developing brain.
“The placenta is an often misunderstood and overlooked tissue, despite its importance in regulating and thereby reflecting events critical to brain development in utero. It is like a time capsule for finding things that happened in utero. For decades, hospital births have thrown away placentae despite this tissue being a gold mine for finding molecular clues to child outcomes,” LaSalle said.
During pregnancy, the fetus might experience oxidative stress, an imbalance of free radicals and antioxidants in the body. This is common in normal brain development. However, in some cases, exposure to environmental factors such as air pollution and pesticides can lead to excessive oxidative stress. This state can lead to cell and tissue damage or delayed neurodevelopment.
“Oxidative stress is normal. But excessive oxidative stress may come from environmental exposures linked to ASD such as air pollution, pesticides, maternal obesity and inflammation,” LaSalle said.
The epigenome is a set of chemical compounds and proteins that tell the DNA what to do. These compounds attach to DNA and modify its function. One such compound is CH3 (known as the methyl group) which leads to DNA methylation. The neonatal epigenome can reflect past interactions between genetic and environmental factors during early development. It may also influence future health outcomes.
The placenta is a promising tissue for identifying DNA methylation changes at genes that also function in the fetal brain. This study examined the association of ASD with placental DNA methylation.
Finding factors in mother’s placenta that might predict autism
The researchers studied the development of 204 children born to mothers enrolled in the MARBLES and EARLI studies. These mothers had at least one older child with autism and were considered with higher probability of having another child with ASD. When these children were born, the mothers’ placentae were preserved for future analysis.
At 36 months, the children got diagnostic and developmental assessments. Based on these tests, the researchers grouped the children under “typically developing” (TD), “with ASD” and “non-typical development” (Non-TD).
The researchers also extracted and quantified the DNA from the placenta tissues. They divided the placenta samples into discovery, replication and specificity replication groups.
For the discovery group, they split and sequenced 92 samples (46 ASD, 46 TD) from the MARBLES study using whole-genome bisulfite sequencing (WGBS) and whole-genome sequencing (WGS). To determine if differential methylation was reproducible in a different population, the replication group included WGBS data from 16 ASD and 31 TD samples from the EARLI study.
The specificity replication group had 21 ASD, 13 Non-TD and 31 TD placenta samples from the MARBLES study. The researchers used these samples to determine if methylation changes were specific to ASD.
Finally, they performed whole-genome sequencing on 41 ASD and 37 TD MARBLES children.
Early autism diagnosis may get kids the support they need
Placenta to reveal insights into genes related to ASD
The researchers identified a block of differential methylation in ASD at 22q13.33, a region in chromosome 22 not previously linked to ASD. They located and characterized a novel gene known as LOC105373085 within that region and renamed it NHIP (neuronal hypoxia inducible, placenta associated).
To understand the function of this gene, they detected the levels of NHIP expression in human cell lines and brain tissue. They tested the responsiveness of NHIP to hypoxia, a state of low oxygen levels in the tissues. The researchers found that NHIP is a gene that gets turned on in neurons following hypoxia and regulates other gene pathways with functions in neuronal development and response to oxidative stress. Higher NHIP levels increased the cell division in an embryonic cell line.
This is important because in the placenta, hypoxia triggers placental cell division to make further contact with maternal blood vessels to supply enough oxygen for the developing brain.
The researchers also discovered that NHIP was less activated in ASD placenta and brain compared to TD samples, supporting a protective role for NHIP in preventing ASD.
“We found that the NHIP gene is active in the brain, responsive to oxidative stress, and influences expression of other known genes associated with autism,” LaSalle said. “In most pregnancies, the placenta experiences some inevitable levels of stress. We think that NHIP is there to buffer the effects of excessive oxidative stress.”
Prenatal vitamins and autism
Another remarkable finding from the study was the role prenatal vitamins play in regulating the work of NHIP. Prenatal vitamins are high in folic acid and can reduce oxidative stress.
Prenatal vitamins use during the first month of pregnancy showed a significant protective effect among individuals with genetic differences at 22q13.33 NHIP region. Taking prenatal vitamins in the first month of pregnancy seems to provide essential metabolic elements to counteract the genetic inheritance of reduced NHIP responsiveness to oxidative stress.
“In line with previous studies, we found that taking a prenatal vitamin is essential when planning a pregnancy,” said LaSalle. “Findings from our study provide key insights that may help in identifying newborns more likely to develop autism and getting them into an earlier intervention or just knowing to watch them sooner.”
The researchers pointed out that these results will require further replication before being used diagnostically.
More than 75 million people around the world living with disabilities need wheelchairs but, sadly, do not have them, according to the World Health Organization. For more than 20 years, a faith-based nonprofit called Free Wheelchair Mission has worked to close the gap by providing inexpensive, unique wheelchairs. Since its founding in 2001, the organization has remarkably distributed over 1.3 million wheelchairs to people with varying disabilities in 94 developing countries.
A Mission to Move
Free Wheelchair Mission was established by Don Schoendorfer, a biomedical engineer who has dedicated his design skills to combating immobility. Schoendorfer humbly constructed the first prototype, called the GEN_1 model, using a just standard white plastic lawn chair and two mountain bike tires mounted to a steel frame. He then began to disperse his innovative creations throughout the world on various mission trips.
Free Wheelchair Mission has since grown to produce three cost-effective and highly functional wheelchair types, with the addition of two more advanced designs called the GEN_2 and GEN_3. The models feature different designs that are intended for various terrains and other considerations of developing countries.
Free Wheelchair Mission
What’s Coming Up
This May 2022, supporters from around the country will join together for Move for Mobility, a month-long virtual fundraising event. This fully-accessible opportunity is slated to provide approximately 1,000 wheelchairs to people with disabilities on a global scale. Unlike traditional “run” or “walk” fundraisers, Move for Mobility enables participants of all abilities, from anywhere in the nation, to run, walk, hike, roll, swim, jump, bike or move in any preferred way.
Jessica Harris is a wheelchair user who will be passionately participating in Move for Mobility this May, along with her friends and family. Coincidently, May 1st also marks the anniversary of the accident which resulted in Jessica becoming a wheelchair user.
Jessica shared, “It’s an honor to move for mobility in my wheelchair with my friends and family for such an important cause. We plan to do a 5K in celebration of my 5-year life day!”
1-in-4 U.S. adults have a disability that impacts major life activities, according to the Centers for Disease Control (CDC). People with disabilities constitute the nation’s largest minority group. And thanks to COVID-19 – and more specifically “long COVID” – many people are now unexpectedly entering the disability community.
The U.S. Department of Health & Human Services (HHS) cites that: “Although many people with COVID-19 get better within weeks, some people continue to experience symptoms that can last months after first being infected, or may have new or recurring symptoms at a later time. This can happen to anyone who has had COVID-19, even if the initial illness was mild. People with this condition are sometimes called long-haulers. This condition is known as long COVID.”
Long COVID symptoms often include persistent pain, fatigue, brain fog and a worsening of symptoms after even minimal activity, according to Solve Long Covid Initiative, an effort of Solve M.E., a nonprofit that serves as a catalyst for critical research into diagnostics, treatments and cures for post-infection diseases. This is in addition to those who experienced other COVID complications, like stroke, organ failure and various ventilator-related issues.
As of July 2021, long COVID, also known as post-COVID conditions, can be considered a disability under the Americans with Disabilities Act (ADA). A person with long COVID, according to HHS, has a disability if the person’s condition or any of its symptoms is a “physical or mental” impairment that “substantially limits” one or more major life activities.
credit: CDC
New Research Explores Economic, Social and Workplace Impact of Long COVID
A new whitepaper titled Long COVID’s Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost was published in April 2022 by Solve Long Covid Initiative. The whitepaper uses mathematical models to estimate the magnitude of this public health crisis on national and state levels.
“Long COVID’s impact is profound on all facets of life, work and community, and will only intensify in the months and years ahead,” says Oved Amitay, president and CEO, Solve M.E. “We have multiple problems to solve — employees who are unable to work full-time are facing the loss of health insurance coverage and other vital benefits. Organizations with outdated disability policies must revise them to accommodate the unpredictable nature and lack of timelines for chronic illness recovery. Local, state and federal leaders need to establish effective programs to support people facing these life-changing conditions.”
Among the key paper findings, it is estimated that:
22 million U.S. adults are living with long COVID – close to 7% of the population.
7 million are experiencing disabling long COVID – 2.3% of the population.
As of January 2022, the cumulative cost of long COVID is estimated at more than $386 billion. [This estimate includes lost wages, lost savings and medical expenses incurred by individuals. It does not include costs incurred by businesses or government agencies.]
California has the highest number of cases of all 50 states, with more than 2.4 million long COVID cases and 817,000 disabling long COVID cases. Cumulative personal financial burden is estimated at $43.2 billion.
When looking at the proportion of a state’s population that is afflicted, Rhode Island tops the list, with an estimated 9.5% and 3.1% of residents suffering from long COVID and disabling long COVID, respectively.
“We defined disabled by long COVID as 10% of those infected by SARS-CoV-2 consistent with current research and reports from patients,” whitepaper co-author Emily Taylor tells AmeriDisability. Taylor, who serves as Solve M.E.’s VP of Advocacy and Engagement, further explains, “Disabling long COVID (DLC) in this paper is defined as a patient’s experience of disabling or disruptive symptoms following a suspected or confirmed case of COVID-19. Those experiencing DLC are unable to fully function at their pre-infection level and the experience of lingering or new symptoms results in disability or reduced ability to work.”
photo: CDC
The Battle for Disability Benefits
Even though long COVID can now be considered a disability under ADA, those impacted are struggling to obtain disability insurance (DI), among other hurdles. The U.S. Social Security Administration (SSA) says that it received 23,000 applications since the beginning of the pandemic that mention long COVID in some way, which is less than 1% of its annual applications. However, long COVID-related numbers may be significantly undercounted for a variety of reasons, such as lack of clear medical guidance, uncertainty surrounding latent illness cause and effect, difficulties with criteria/documentation, lengthy application processes and high rejection rates.
The Washington Post recently reported that many long COVID patients are indeed too ill to work yet are having “difficulty meeting the evidence threshold insurers’ demand: objective medical test results showing an inability to perform work.” So, some applicants are seeking much-needed assistance from companies like Allsup, a nationwide provider of Social Security Disability Insurance (SSDI) representation and veterans’ disability appeals services. That’s because, according to Allsup, about 64% of new SSDI applicants will have their initial application denied and many will then encounter a lengthy appeals process.
“A 2021 study by National Bureau of Economic Research suggested that having an SSDI representative assist you with your application improves the likelihood of an approval by 23%,” says T.J. Geist, Allsup Principal Advocate. “As the study indicates, this is often because an experienced representative understands the SSA’s medical listings and how to thoroughly document that someone meets these listings.” And oftentimes, individuals who are experiencing severe medical issues find it a tall task to advocate for themselves, notes Geist. “Sometimes claimants are not honest enough with themselves about the struggles they’re experiencing.”
It’s quite possible that long COVID has likely increased disability insurance applications well beyond the low percentage cited, but identifying accurate statistics is tricky. “I believe this, currently, is one of the many long COVID voids,” says Philippa Dunne, Co-Editor at TLRAnalytics and another co-author of the new whitepaper.
“Those disabled by long COVID are facing many of the same hurdles people with other post-infection illnesses have faced over the years. That includes the challenges of having an invisible illness with multiple definitions and high levels of misinformation. Specifically, the symptom “post-exertional malaise” tends to befuddle disability approval processes,” Taylor says. “This symptom occurs when patients experience a “crash” or worsening of symptoms between 24-48 hours after physical or mental exertion. It’s hard to measure, hard to quantify and often ignored, despite having a devastating impact on a patient’s quality of life,” she adds.
Geist shares similar concerns. “Allsup is seeing dozens of claims monthly specifically citing COVID-19 as a factor. Keep in mind that someone may be applying for SSDI benefits with an existing disability and then experience severe debilitating effects after exposure to the coronavirus. This means the virus has complicated pre-existing issues and worsened them, which could have occurred in connection to lung or other organ damage, neurological or brain-related disease, and other medical issues. So the primary disability may not be listed as long COVID,” he explains.
source: Shutterstock
What Long Haulers Need to Know
Geist believes that individuals who experience long-haul symptoms need detailed documentation of what they are experiencing and how it is a direct result of COVID. He suggests that patients maintain constant communication with their medical professionals to track symptoms and health conditions with proper health filings, including tests, screenings and verbal reports.
“To qualify for SSDI benefits, it is important to document the medical condition’s effects including preventing someone’s ability to work and conduct daily activities,” Geist says. And time is a major factor. “The SSDI program requires that they have a severe medically determinable impairment, documented in medical records, that has prevented them from working or will prevent them from working for at least 12 months.”
Continuing the Conversation
Unfortunately, it seems that SSA may have major hiccups to address. According to Geist, Social Security does not currently have a medical listing for COVID-19-related disabilities and, instead, provides general guidance for disability examiners to follow. “We are monitoring how the medical community is addressing long COVID symptoms and determining whether or not a health condition reaches disability status. All things considered, components in this process continue to be fluid and evolving, which can contribute to inconsistency and delays,” he says.
The coronavirus pandemic is, of course, far from over and seemingly everchanging. Yet people with certain disabilities, chronic conditions and weakened immune systems remain at higher risk for severe illness or death. That’s why disability advocates, such as the American Association of People with Disabilities, continue to proactively encourage the CDC and other leading health authorities to keep high-risk populations a priority for both prevention and treatment of COVID. Some disability organizations caution that the CDC’s recent relaxation of restrictions may be premature and, consequently, result in yet another spike in COVID cases.
Expert panel discussions were held in early April 2022 to explore the whitepaper’s findings, as well as the financial, social and emotional impact of long COVID and disabling long COVID. [Here are recording links to session 1 and session 2.] Panelists covered how workplaces and communities are facing challenges, and what support may be needed to provide adequate support. The Solve Long Covid Initiative will host its next program, in partnership with the Global Interdependence Center, on May 19, 2022. Click here for event details.
Editor’s Note: Information pertaining to COVID-19 continues to develop. AmeriDisability strives to provide up-to-date information; however, information may change after our publish date.
Duchenne muscular dystrophy is a progressive genetic disorder causing severe disability and early death. Promising animal studies and earlier investigations led to a trial of intravenous stem cell therapy in an 11-year-old boy, described in the winter issue of the Journal of American Physicians and Surgeons by Darah Mohammed Pourakbar, M.S., Kipp Van Camp, D.O., and Cameron D. Knackstedt, D.O.
The patient underwent a 90-day treatment protocol involving three intravenous infusions of mesenchymal stem cells and exosomes derived from placenta and umbilical cord, mixed with platelet-rich plasma. The patient showed improvement in several measures on a musculoskeletal assessment test and stability on cognitive testing. Both the patient and his parents reported positive improvement in his overall balance and dexterity from their daily observations, and they elected to continue treatments after the protocol was completed.
The treatment appeared to be effective and safe. Future studies should involve blinded evaluations of treatment in a large number of patients over a prolonged period, with special attention to comparing the available delivery methods for the stem cells.
Want to read about more scientific studies? Here are similar articles by AmeriDisability.com:
Loungewear just got a bit comfier thanks to Slick Chicks, a female-founded and run social impact company whose core mission is to empower people with the products and community they create. The new line by Slick Chicks features fashionable and functional loungewear and is made for those with physical disabilities, chronic illnesses, or limited dexterity.
“Our mission is to empower people to tackle any of life’s daily challenges because we all deserve a sense of self, dignity, and independence.” –Helya Mohammadian, FOUNDER & CEO of SlicK CHICKS
Slick Chicks’ loungewear is designed with accessible closures, such as self-fastening patches and two-way zippers to best simplify the dressing process — because everyone deserves to feel supported by the products they wear. These accessible closures make Slick Chicks’ loungewear collection easy to take on or off no matter if you’re standing, sitting, or lying down.
Slick Chicks Accessible “V” Neck Crop top with snap buttons and Accessible Side Zip Joggers to simplify dressing. (courtesy of Slick Chicks)
Founder and CEO of Slick Chicks, Helya Mohammadian weighs in, “It’s not as simple as putting your pants on one leg at a time for everyone. For many, this ritual is difficult and requires extra care and support. That’s where Slick Chicks comes in.”
Every Slick Chicks product is designed with accessibility in mind and Slick Chicks’ newest collection is no exception. Its features focus on comfortability, mobility, and accessibility. Within the past years, the thriving company has developed partnerships with major retailers such as Target, Aerie, and JCPenney. Slick Chicks’ products are now available to purchase online through these major retailers and many more.
An investigational device called a brain-computer interface has been found safe in a small study of people with paralysis from ALS, and has allowed participants to use a computer to communicate by text and do daily tasks such as online shopping and banking, according to a preliminary study released at the end of March 2022. The findings were presented at the American Academy of Neurology’s 74th Annual Meeting in Seattle in early April. Another virtual presentation is slated for April 24 to 26, 2022.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. People with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis.
“People with ALS eventually lose their ability to move their limbs, making them unable to operate devices like a phone or computer,” said study author Bruce Campbell, MD, MS, of the University of Melbourne in Australia and a member of the American Academy of Neurology. “Our research is exciting because while other devices require surgery that involves opening the skull, this brain-computer interface device is much less invasive. It receives electrical signals from the brain, allowing people to control a computer by thought.”
credit: Shutterstock
For the study, four people with ALS underwent a procedure to have the device implanted within the brain. The brain-computer interface is fed through one of two jugular veins in the neck into a large blood vessel in the brain. The device, comprised of a net-like material with 16 sensors attached, expands to line the vessel wall. That device is connected to an electronic device in the chest that then relays the brain signals from the motor cortex, the part of the brain that generates signals for movement, into commands for a laptop computer.
Researchers monitored participants for one year and found the device was safe. There were no serious adverse events that led to disability or death. The device also stayed in place for all four people and the blood vessel in which the device was implanted remained open.
Researchers also examined whether participants could use the brain-computer interface to perform routine digital tasks. All participants learned how to use the device with eye tracking to use a computer. Eye-tracking technology helps a computer determine what a person is looking at.
Researchers also report that a decoder developed during the study allowed one study participant to control a computer independently without an eye tracker. The machine-learning decoder was programmed as follows: when a trainer asked participants to attempt certain movements, like tapping their foot or extending their knee, the decoder analyzed nerve cell signals from those movement attempts. The decoder was able to translate movement signals into computer navigation.
“Our research is still new, but it holds great promise for people with paralysis who want to maintain a level of independence,” said Campbell. “We are continuing this research in Australia as well as in the United States in larger groups of people.”
Springtime is the perfect time to enjoy fresh air, sunshine and Mother Nature through a variety of sensory-friendly activities, including tons of fun for children with disabilities and/or special needs.
Studies have concluded that nature is good for one’s overall health. According to the American Society of Landscape Architects, time spent outdoors enhances self-esteem and mood, improves cognitive function and memory-related abilities, and increases attention spans among children with autism spectrum disorder, to name a few of the many known benefits. It’s exciting to know that countless research studies continue to show that nature-based activities for children with special needs positively impact physical, emotional, social and cognitive development.
So, here are ten simple, yet effective sensory-friendly activities for kiddos with special needs to enjoy this spring.
Bubbles
There are a ton of high-tech toys now available for purchase to entertain little cuties that have special needs or developmental delays. And, of course, AmeriDisability doesn’t want to burst the bubble on these awesome disability-tech advancements! But sometimes inexpensive, basic toys create just the priceless engagement that families desire. We’re talking about the precious pastime of blowing bubbles.
Children can work on dexterity and hand-eye coordination as they dip the stick into the jug. Then, watch their oral motor skills magically create bubbles in all shapes, sizes and colors. For those who need a little assistance, either a handheld bubbler or automatic bubble machine might do the trick. And if the smell of fresh-cut grass and flowers blooming in your yard doesn’t stimulate enough, consider adding drops of scented soap or essential oils into the bubbles to achieve an enhanced aromatic experience.
credit: Shutterstock
Fruit Picking
Wouldn’t a visit to a u-pick farm to gather fresh fruit with the apple of your eye be an added cherry to top off a lovely spring day? The wide-open spaces of local farms are typically pretty comfortable for youngsters that tend to get overwhelmed by more crowded environments. Click over to PickYourOwn.org to find a list of u-pick farms with site details, seasonal produce calendars, recipes and events.
Families, and especially those with special needs, know to plan ahead. So while farms may provide containers for fruit collection, other onsite amenities may vary greatly at differing locations. Consider bringing snacks (allergy-free if needed), water, sunscreen, hats and/or sensory-friendly clothing, handi-wipes, cash (as some farms don’t take credit cards) and perhaps a cooler to transport your freshly-picked produce. It’s also important to note that restrooms may not be available or limited to port-o-lets, so consider taking a bathroom break before arrival or planning accordingly.
Children are more inclined to try new foods, including fruits and vegetables, if and when they are involved in the process. So your picky eater might just be willing to try a blackberry (or other new food) if he/she personally picked it off the bush. U-pick farms are a great way to influence the consumption of healthy foods, especially since people with disabilities can find it more difficult to eat healithy, control their weight and be physically active.
Gardening
According to Obsessed Lawn, an online gardening resource and buying guide, gardening can be an effective form of therapy for individuals with special needs. Not only does it get budding gardeners involved in an activity where they will accomplish something amazing in nature, but gardening also helps develop cognitive reasoning and motor skills. Little diggers can work their hands into the dirt and feel the many textures of the Earth.
Research suggests that gardening reduces stress and depression symptoms, while boosting muscle strength, mental clarity and a sense of accomplishment. Plus, similarly to the fruit picking activity suggestion, food gardeners who increase consumption of fresh fruits and vegetables can reap the added benefits of a decreased waistline and a lowered risk of cardiovascular disease and cancer.
credit: CDC
Accessible Gardens is a specialty outdoor company that produces versatile raised garden beds for customers with physical limitations, to make gardening engaging for most including wheelchair users. The Rhode Island-based business was founded in 2008 by Raymond LaRocque, who was eager to work his green thumb despite having an autoimmune-related spinal cord injury. Plus, there are plenty of options when it comes to accessible garden tools for all abilities.
Those interested in insects may enjoy growing milkweed plants and other pollinating plants that attract butterflies, bees and beautiful bugs. Or, build, decorate and hang a birdhouse with your little chickadees to attract the sweet, soothing chirps of colorful creatures.
Jogging or Biking
Sensory-seekers usually like fast, constant movement activities. Riding bicycles or scooters together is a fast-paced way to partake in fun exercise while outdoors. Families with special needs have plenty of options when it comes to adaptive bikes, tricycles, hand-bikes, ride-along seats, comfy bike trailers and so on. With gorgeous temperatures, many sensory-seeking kiddos may also love riding in a jogging stroller while mom or dad breaks a sweat.
Kindness Rocks
Ever noticed a somewhat hidden painted rock with a positive message on it? A grassroots movement, called the Kindness Rocks Project, has gained momentum in recent years with its goal to cultivate connections within communities and lift others up through simple acts of kindness. Give it try by creating some of your own meaningful designs, get messy with the paint and focus on lifting spirits through the power of positive words. This is a beautiful way to promote inclusion and empathy. To take this idea a step further, hide the rocks throughout your neighborhood and send out an invitation for friendly neighbors to participate in a Kindness Rocks scavenger hunt!
Hiking
The National Parks Service (NPS) has several pass programs that grant access to more than 2,000 federal recreation sites across the nation, including National Parks, National Wildlife Refuges and many National Forest and other federal recreation lands. A pass may cover entrance, standard amenity fees and day-use fees for a driver and all passengers in a personal vehicle and may also offer other discounts. Those with disabilities should obtain an Access Pass. This free, lifetime pass is available to U.S. citizens or permanent residents that have a disability. NPS also offers a Military Pass, Senior Pass and other options.
Park Play
Play helps children grow and learn — how they move, how their muscles work, their tactile senses, vision and hearing… all develop as they play. And physical learning contributes to cognitive development, as children hone their motor skills and spatial perception. A trip to the playground can stimulate social engagement and, of course, present many sensory exploration opportunities. Kids may love digging in the sandbox, climbing a rock wall, swinging on the monkey bars, bouncing on the seesaw and soaring high and fast on the swings, among other play opportunities. More and more communities are opening inclusive playgrounds that better foster a welcoming environment for children of all abilities. This includes wheelchair-friendly ramps, braille play stations and more.
credit: Shutterstock
Sidewalk Chalk
Art therapy, which includes exposure to color (i.e. chromotherapy), is considered an effective rehabilitative method to aid physical and emotional health. As with physical therapy, repetitive exercise (i.e. painting strokes) of weakened muscles can help people with mobility issues gain elasticity, strength and balance. For mental wellbeing, art therapy boosts creative expression, ignites a calming effect and can relieve stress. In fact, a study from University College London found that the same parts of the brain are stimulated when one looks at art as when one is in love; both release the chemical dopamine promoting feelings of affection and desire. Now that’s powerful, right?
You don’t need to be a certified art therapist to tap into the creativity of your budding artist. Informal art exposure at home ─ or, better yet outdoors in your yard ─ can help children with special needs boost energy and happiness, and decrease depression and anxiety.
Nature has a special way of inspiring artistic creation. Grab some watercolors and head outdoors to create masterpieces together. But, for easy breezy art in the sunshine, sidewalk chalk is the best bet! You don’t need any special canvases, just the sidewalk or driveway and whatever chalk color your little hearts desire. With sidewalk chalk, you can practice letters, numbers, shapes, sight words, writing affirmations and, of course, finally fine-tune your attempts at drawing rocket ships, sailboats, rainbows and tons of other pictures. And clean-up is totally simple… just shake chalk dust off of clothes, wash up in the bathroom sink and let the rainclouds organically clear your cement canvas for a clean slate for your next sidewalk chalk play date.
Spring Cleaning
While maybe not the most fun activity on this list, believe it or not some sensory-seeking kids can really get into spring cleaning. The vacuum does scare some sensory-sensitive children, but those who like loud noises enjoy the labor of pushing the loud, heavy machine. And the motion of using a duster is not all that different than stroking a paintbrush. Can cleaning dishes in a super sudsy sink double as water playtime? Sure… especially if you toss a few toys in for cleaning too. And cleaning the car in the driveway is guaranteed springtime fun! You just know that hose is going to ignite a family water squirt competition.
Spring-Themed Sensory Bins
Sensory bins filled with textured items like beans, corn, rice, rocks, sand and water beads can make for stimulating bases to fill with scoopers and toys. To make a bin seasonally fun, opt for: (1) pebbles, plants and flower petals tossed with plastic bugs and butterflies; (2) pastel-colored sprinkles mixed with toy bunnies, chicks and farm animals; or (3) firm, blue gelatin filled with seashells and toy sea animals.
Also try:
Camping (at an accessible site for experienced campers, or the backyard for novice campers)
Catch fireflies
Glow stick dance party in the yard
Hopscotch
Picnics
Stargazing
Water play, such as sprinklers, slip n’ slid, kiddie pool, etc.
As a reminder, some people with special needs may be heat or sun intolerant due to a specific disability, condition or because of prescribed medication. Do enjoy the outdoors safely with ample shade, sunscreen and hydration.
