I Feel Like a Tomato

All
featured
Disability
Education
Health
Business
Lifestyle
Careers
Events
Technology
Entertainment
Government
Finance

DisabilityLifestyle

Fresh tomato isolated on white background

By Shelby Smallwood-Brill

As a woman who uses a rollator most days, sometimes it’s hard to explain to people that I’m kind of disabled, kind of not.

When curious little kids ask why I’m using a walker with wheels just like their grandma, I usually tell them I hurt my leg. It’s easier than explaining years and years of complicated mishaps and surgeries that lead to scar tissue on my spinal cord, which causes my legs to super tight all the time. Kids don’t want to hear that, and frankly neither do most adults.

Sometimes the wicked part of me wants to tell kids that I didn’t eat my vegetables when I was a kid, and now I walk like this – just to freak them out. The thought of it makes me laugh, but I’m not sure how well a joke like that would be received by parents, so I usually bite my tongue. If a child presses me for details, I usually say I was in a car accident (I wasn’t) or hit by a drunk driver (that’s a lie, too). Why? Because kids understand an accident and are able to move on once they understand why I’m using a walker. If I try to tell the truth, I can see their little eyes glaze over as their brain gets caught in a limbo state of not understanding, and with that, confusion about what they should say or do around me. Now that I think about it – that happens with grownups as well.

The human brain naturally puts people and things into categories to understand and process them efficiently. Craig McGarty discusses the importance of social categorization in his article featured in the Oxford Research Encyclopedia of Psychology. He discusses how we make sense of the world by using categorization. Social categorization influences how we view ourselves and those we interact with. We use social categorization to figure out relationships between people and groups, and how we fit in to those groups. We use categories to predict behavior, anticipate needs, figure out who will see eye to eye with us and who we’ll get along with.

So, when a kid is confused about why I need a walker, it’s because they don’t know what social category to put me in. You and me both, kid.

A tomato is technically a fruit but feels like a vegetable. When it comes to disability, I sort of feel like a tomato. I don’t use a wheelchair, so I don’t fit the classic image of a person with a physical disability, but I do walk with crutches or a rollator, so I don’t fit in with the 100 percent able-bodied group anymore.

Recently I came across the term, “spoonie,” that describes someone who relates to spoon theory. I love how this label helps sum up so much complex information in one word. Similar to “foodie” or “gamer,” you get it with one word.

Spoon theory was coined by Christine Miserandino back in 2003, and the term has been adopted by “spoonies” ever since to describe the physical and mental energy expenditure required to live in a physically disabled body. You start your day with a certain number of spoons, and you must plan your day accordingly. Wake up, 1 spoon. Go to work, 5 spoons. Pick up your kids, make dinner, help with homework… You get it – they take all of your spoons.

The frustrations of running out of spoons too quickly can be similar to counting calories or using a cell phone with a battery that dies too quickly. It doesn’t necessarily need to be spoons that represent your daily energy share – some people think of it in terms of money or points. Either way, you need to be smart and plan for the unexpected things that life throws at you. Living this way makes it hard to be spontaneous, even if that’s your nature. A friend who asks if you want to go to happy hour after work usually gets turned down because you haven’t allocated enough spoons for the added energy. If you were to go to happy hour, you wouldn’t have enough energy, for example, to get up the next morning and go to work.

What I appreciate about spoon theory is that it gives a visual representation of the concept of once your energy is spent, you’re done. Period. Sometimes that can be hard to communicate, and having a visual aid is helpful.

Although many scoff at applying labels to groups of people, I find that it’s a great way to grease the wheels of conversation and lead to a faster connection with others.

Labels are also great when you need to search for things that interest you online. Try searching for “disability” vs “learning disability” and you’ll see what I mean. Both human nature and Google love segmenting people into categories, and I’m fine with that.

Disabilities can be divided into broad categories like physical or developmental, for example, but once you try to get more specific, things get murky. As people with disabilities, we’re all like little snowflakes with our unique issues and circumstances that make us different than your average person without disabilities. I understand the spirit behind putting people first, and that labels are meant for jars, not people. However, as someone who doesn’t quite fit into any existing labels, I find myself wishing I had one. People who have a label for their disability have an easier time finding each other and becoming a supportive tribe.

I can’t be the only one that feels this way, right?

Source: thatzhowiroll.com

People with disabilities desperately need the vaccine. But states disagree on when they’ll get it.

Disability

By The Washington Post

For weeks, Wendy Lincicome has been asking the same question. She asks it on the phone. She asks it in emails to state officials. She cares for an epileptic blind man with cerebral palsy 24 hours a day, and when he is asleep, she types her question into Google.

“When will people with disabilities get the coronavirus vaccine?” Tens of thousands of Americans with intellectual and developmental disabilities — who are two to three times as likely to die of covid-19 — are waiting for an answer.

The Centers for Disease Control and Prevention has said health-care personnel and residents of long-term-care facilities should be first in line, in phase “1a.” Disability advocates say guidance should be interpreted to include all people with disabilities who receive long-term care, whether in large institutions, smaller group homes or in settings like Lincicome’s, who is paid to live with a North Carolina man who has round-the-clock needs.

But as guidance from the federal government has been translated into vaccine distribution plans made by states, those with disabilities have been downgraded to lower priority status.

D.C. as well as Maryland, Alabama and many other states are leaving people with disabilities who live in large institutions and group homes out of their Phase 1a plans, instead moving them to 1b or 1c. In Indiana and Rhode Island, group homes have been pushed to Phase 2, with the likelihood that vaccinations are months away.

Most states make no mention of disabilities in their vaccine plans, leaving people like Lincicome panicking and confused about how long they and those for whom they care will have to wait.

She is terrified that the man who relies on her, 33-year-old Sloan Meek, could end up as another case of a disabled person being allegedly discriminated against in a hospital after falling ill with covid-19. Without her help, or the help of a computer, Meek is extremely limited in what he can communicate to medical professionals.

“They don’t look at Sloan and see what I see,” Lincicome said. “They don’t see the guy who just recorded an album or has an annual Christmas carol concert. They see a wheelchair, and somebody who is laying in their bed all day.”

By North Carolina guidelines, Meek may not qualify for the vaccine until Phase 2, because he doesn’t live in a home with other individuals with disabilities. If Meek lived in Tennessee, according to its state plan, he’d be a part of the very first wave of vaccinations because of the level of care he receives. Though some state plans would count Lincicome — a caregiver known as a “direct support professional” — as a health-care provider to be provided for in Phase 1a, most have no public plans for caregivers in her role.

The lack of consistency is the result of a lack of guidance from the CDC. Other than acknowledging those with Down syndrome should be prioritized along with people with high-risk medical conditions, federal recommendations for vaccine rollout make no explicit mention of any other disabilities.

A CDC spokesman said states could request that intermediate-care facilities, the large, often government-run institutions for the disabled, receive vaccinations through the same pharmacy partnership program as nursing homes. Decades of reform efforts have closed many of those institutions, moving people with disabilities into small group homes or other living situations integrated into their communities.

But despite an estimated 70,000 people living in group homes, the CDC recommendations do not include them, leaving states to decide where inline those residents, and their caregivers, should fall.

On Tuesday, the Trump administration complicated those choices even more by instructing states to begin vaccinating people with high-risk medical conditions and adults 65 and older.

Read the full article at The Washington Post.

Why Disability Issues Should Be A Higher Priority, Even Now

Disability

By Forbes

Disability issues in particular risk being sidelined even more than they usually are. Despite some notable recent success in bringing disability policy to the attention of politicians, disability is still widely regarded as a niche concern.

The phrase “Everything that’s going on” has rarely been so potent. Presidential Election results have been openly challenged in Congress. The Capitol building itself has been physically attacked by a wild but disturbingly directed mob. The Covid-19 pandemic seems to be escalating everywhere.

So it may be tempting for elected officials and political strategists to set seemingly specialized concerns aside in 2021 and focus just on a few of the perceived “fundamentals” that are understood to affect “everyone,” rather than narrower “special interests.” Conventional wisdom might suggest that with American democracy literally teetering on the brink, matters like Social Security rules, disability rights laws, and even health care eligibility should be put not just on the back burner, but in the deep freeze for the foreseeable future.

This would be a mistake – morally, practically, and politically. Disability issues are far more important and relevant than most people realize. They also offer ground for some tentative returns to a semblance of political bipartisanship, and restoration of faith in society’s ability to do things better. Here are five reasons why disability issues shouldn’t be set aside right now.

The disability community is a large constituency, not a tiny special interest.

According to the Centers for Disease Control, 61 million adults in the U.S. have some kind of disability – that’s 26% of the adult population, or 1 in 4 adults. 13.7% of adults have a mobility disability. 10.8% have cognitive or intellectual disabilities. 5.9% of adults have hearing impairments. And 4.6% have vision impairments. These are all minorities in the numerical sense, compared with the whole U.S. population. But they are all substantial minorities.

We should also count families and friends of disabled people too, as part of a more broadly-defined disability community or constituency. It’s a common mistake to assume that non-disabled spouses, siblings, adult children, and work and school buddies always have the same views and priorities as actual disabled people. But they are at least potential and often genuine allies on disability issues.

Read the full article at Forbes.

Amazon Billionaire Gives ‘Transformational’ Gifts To Disability Nonprofits

Disability

MacKenzie Scott, the ex-wife of Amazon founder Jeff Bezos. Scott said she gifted more than $4.1 billion to nonprofits in just four months.

Multiple nonprofits serving people with disabilities are receiving an unprecedented and unexpected influx of cash as part of a massive wave of donations from the billionaire ex-wife of Amazon founder Jeff Bezos.

Easterseals and 22 of its affiliates across the nation said it received $162 million from MacKenzie Scott. Meanwhile, Goodwill Industries International said it received $20 million and additional funds were given to 46 of its affiliates.

The contributions represent the largest either of the groups have ever received. Both of the nonprofits are over 100

(Image Credit – Disability Scoop)

years old.

The money is part of a blitz of donations from Scott who announced in December that she gave over $4.1 billion to 384 organizations across the nation in the preceding four months.

Scott signed the Giving Pledge in 2019, a commitment to give the majority of her wealth to charity.

In a posting on Medium, the philanthropist cited the pandemic, which she described as a “wrecking ball in the lives of Americans already struggling,” and said that she “asked a team of advisors to help me accelerate my 2020 giving through immediate support to people suffering the economic effects of the crisis.”

Read the full article at Disability Scoop.

World Braille Day Is Monday – Check Out How Westchester Independent Living Center is Celebrating

Disability

This Monday, January 4^th is World Braille Day, an international day of recognition for the tactile alphabetic and numerical representation system that has changed the world in so many ways.

It was created in commemoration of Louis Braille’s birthday, the inventor of the system who became blind after a childhood accident in the 19^th century. Decades later, this system still provides exponential value to those individuals that are blind and visually impaired.

On World Braille Day organizations like Westchester Independent Living Center (WILC) are working to bring awareness to the importance of accessibility and independence for people living with visual impairments. Since first opening their doors in 1981, WILC has maintained a steady presence in their surrounding community securing its place as one of the premiere living centers for people living with disabilities in Westchester County.

“Everyone deserves and is legally entitled to the same accommodations and services, regardless of their physical capabilities,” said Joe Bravo, Executive Director at WILC. “Join us as we celebrate World Braille Day on Monday continuing to do our part for the community by making living facilities more accessible for everyone.”

Drug Reverses Age-Related Mental Decline Within Days, Suggesting Lost Cognitive Ability is Not Permanent

Disability

Creative digital brain. Artifical intelligence and ai concept. 3D Rendering

Just a few doses of an experimental drug that reboots protein production in cells can reverse age-related declines in memory and mental flexibility in mice, according to a new study by UC San Francisco scientists.

The drug, called ISRIB, has already been shown in laboratory studies to restore memory function months after traumatic brain injury (TBI), reverse cognitive impairments in Down Syndrome, prevent noise-related hearing loss, fight certain types of prostate cancer, and even enhance cognition in healthy animals.

In the new study, published Dec. 1 in the open-access journal eLife, researchers showed rapid restoration of youthful cognitive abilities in aged mice, accompanied by a rejuvenation of brain and immune cells that could help explain improvements in brain function—and with no side effects observed.

“ISRIB’s extremely rapid effects show for the first time that a significant component of age-related cognitive losses may be caused by a kind of reversible physiological “blockage” rather than more permanent degradation,” said Susanna Rosi, PhD, Lewis and Ruth Cozen Chair II and professor in the departments of Neurological Surgery and of Physical Therapy and Rehabilitation Science.

“The data suggest that the aged brain has not permanently lost essential cognitive capacities, as was commonly assumed, but rather that these cognitive resources are still there but have been somehow blocked, trapped by a vicious cycle of cellular stress,” added Peter Walter, PhD, a professor in the UCSF Department of Biochemistry and Biophysics and a Howard Hughes Medical Institute investigator. “Our work with ISRIB demonstrates a way to break that cycle and restore cognitive abilities that had become walled off over time.”

Rebooting cellular protein production holds key to aging

Walter has won numerous scientific awards, including the Breakthrough, Lasker and Shaw prizes, for his decades-long studies of cellular stress responses. ISRIB, discovered in 2013 in Walter’s lab, works by rebooting cells’ protein production machinery after it gets throttled by one of these stress responses – a cellular quality control mechanism called the integrated stress response (ISR; ISRIB stands for ISR InhiBitor).

The ISR normally detects problems with protein production in a cell—a potential sign of viral infection or cancer-promoting gene mutations—and responds by putting the brakes on cell’s protein-synthesis machinery. This safety mechanism is critical for weeding out misbehaving cells, but if stuck in the ‘on’ position in a tissue like the brain, it can lead to serious problems, as cells lose the ability to perform their normal activities, according to Walter and colleagues.

In particular, their recent animal studies have implicated chronic ISR activation in the persistent cognitive and behavioral deficits seen in patients after TBI, by showing that, in mice, brief ISRIB treatment can reboot the ISR and restore normal brain function almost overnight.

The cognitive deficits in TBI patients are often likened to premature aging, which led Rosi and Walter to wonder if the ISR could also underlie purely age-related cognitive decline. Aging is well known to compromise cellular protein production across the body, as life’s many insults pile up and stressors like chronic inflammation wear away at cells, potentially leading to widespread activation of the ISR.

“We’ve seen how ISRIB restores cognition in animals with traumatic brain injury, which in many ways is like a sped-up version of age-related cognitive decline,” said Rosi, who is director of neurocognitive research in the UCSF Brain and Spinal Injury Center and a member of the UCSF Weill Institute for Neurosciences. “It may seem like a crazy idea, but asking whether the drug could reverse symptoms of aging itself was just a logical next step.”

Signature effects of aging disappeared literally overnight

In the new study, researchers led by Rosi lab postdoc Karen Krukowski, PhD, trained aged animals to escape from a watery maze by finding a hidden platform, a task that is typically hard for older animals to learn. But animals who received small daily doses of ISRIB during the three-day training process were able to accomplish the task as well as youthful mice—and much better than animals of the same age who didn’t receive the drug.

Continue on to The Good News Network to read the complete article.

Disability Advocates Urge People To Get Vaccinated Against COVID-19

Disability

Healthcare cure concept with a hand in blue medical gloves holding Coronavirus, Covid 19 virus, vaccine vial

As the first COVID-19 vaccines become available, advocates say that people with developmental disabilities should get vaccinated and they are pushing for this population to be eligible as soon as possible.

In a statement, 20 advocacy groups are calling on people in the disability community to be immunized.

“We encourage our stakeholders to receive the COVID-19 vaccine,” reads the statement spearheaded by the Autism Society of America and signed by Autism Speaks, Easterseals, the National Association of Councils on Developmental Disabilities, the National Association of State Directors of Developmental Disabilities Services and the National Down Syndrome Society, among others.

In a statement, 20 advocacy groups are calling on people in the disability community to be immunized.

The groups said that getting vaccinated will “make it significantly less likely you’ll get COVID-19” and it “may keep you from getting severely ill if you were to contract COVID-19.” In addition, doing so “will help protect vulnerable people around you.”

For those with disabilities, the advocates said that widespread vaccination could lead to an end to remote learning, resumption of regular therapy, support and respite care services, improved employment opportunities and it may allow individuals living in group homes and other congregate settings to see their families and friends again.

“Mass COVID-19 vaccination would allow our global community to recover and help stop the pandemic,” the statement says, while noting that like other medical decisions, people should discuss the COVID-19 vaccine with their physicians.

The benefits of vaccination could be greatest for those with more significant challenges, said Angela Geiger, president and CEO of Autism Speaks.

“For someone with autism and limited communication skills or behavior challenges common in autism, protection afforded by the vaccine can have an immeasurable impact. It can enable renewed participation in community life, access to vital services and supports and an opportunity to begin the recovery from the disruptions in care that have taken place this year,” she said. “This can also be a crucial step for family members and caregivers of people with autism who have more significant needs.”

The push from disability advocacy groups comes as the first COVID-19 vaccine from Pfizer-BioNTech started to be administered in the U.S. this week. With limited supply, the initial shots are going to health care workers and residents of long-term care facilities.

Advocates have been speaking out for months about the need for people with developmental disabilities to be prioritized in the distribution of any COVID-19 vaccines given the high risks they face. Research shows that people within this population who contract the virus face a two to 10 times greater risk of dying as compared to others.

Continue on to Disability Scoop to read the complete article.

LUCI Reimagines Modern Mobility through Wheelchair Smart Technology

BusinessDisability

woman dressed in all yellow seated in a LUCI wheelchair

LUCI, a company that is reimagining modern mobility, today announced the release of its premier product also named LUCI.
It’s a first-of-its-kind hardware and software platform that uses sensor-fusion technologies to allow a power wheelchair to “see” its environment, giving riders unprecedented stability, security and cloud connectivity.
LUCI mounts onto a power wheelchair between the power base and the seat, to help users avoid collisions and dangerous drop-offs while maintaining personalized driving control.

Through cloud-based capabilities, LUCI can also monitor and alert users and caregivers of low battery, possible tipping scenarios, and other important updates regarding the chair and the user.

Tipping over in a wheelchair is a common, treacherous reality, which often leads to trips to the hospital and expensive healthcare bills. In fact, 87 percent of wheelchair users reported at least one tip or fall in the past three years. Wheelchair accidents were the cause of more than 175,000 ER visits in 2010 — the last year the data was tracked — and 30,000 of those were significant enough for admission into the hospital.

“Wheelchair users were left behind when it comes to most innovative technology,” said Barry Dean, CEO and founder of LUCI, a Grammy-nominated songwriter, whose daughter Katherine, 19, has cerebral palsy and has used a wheelchair her whole life. “We realized no one else was working on this problem in a meaningful way so my brother Jered (Dean, CTO of LUCI) and I set out to create a solution for Katherine. What started as a labor of love among family members has ultimately created a safer, more stable way for people with disabilities to navigate their world and stay connected to loved ones. Today, we’re excited to launch LUCI and continue collaborating with researchers, universities and other companies using our open platform to move the industry forward together.”

The LUCI team spent the past two and half years collaborating with clinical professionals and logging over 25,000 hours of user testing to develop an invention to help people with physical disabilities drive safely, precisely and independently. LUCI’s R&D efforts have already resulted in a total of 16 patents (eight pending).

“When we started tinkering with my niece Katherine’s chair, we had no idea where this journey would lead,” said Jered Dean, CTO, who has spent two decades in design and systems engineering, most recently serving as director of the Colorado School of Mines’s Capstone Design@Mines program. “From developing advancements in millimeter-wave radar technology to collaborating with engineering leaders from Intel® RealSense™ Technology group to maximize the application of some of the world’s smartest cameras, I’m incredibly proud of the unprecedented work our team has accomplished to solve the challenges our customers face.”

LUCI’s technology combines stereovision, infrared, ultrasonic and radar sensors to offer users these critical features:
● Collision avoidance: LUCI is designed to prevent wheelchair users from running into objects (walls, people, pets, furniture, etc.) as they navigate their daily lives. It does this by smoothly helping to navigate the chair in coordination with user steering inputs based on obstacle detection in the driver’s surroundings.
● Drop-off protection: It doesn’t take a large drop-off to tip a wheelchair (less than three inches in some cases). LUCI helps users avoid tipping by recognizing steps or drop-offs and smoothly helping the chair continue on a safer path.
● Anti-tipping alert system: LUCI monitors the steepness of a ramp or the ground users are driving on and provides an audible alert if it becomes a tipping danger. In the event that a chair tips over, LUCI sounds an alarm and can be configured to quickly alert other individuals, such as a caregiver or loved one, of the exact location of the rider and the tipped chair.
● Cloud-based communications and alerts: The MyLUCI portal allows users to view their data and share it with loved ones or clinicians. LUCI can be set up to alert others of specific events, such as the user’s location if their battery gets dangerously low. LUCI also now works with Hey Google and Amazon Alexa so users can interact with MyLUCI using their voice. MyLUCI portal is available as mobile apps for both iOS and Android™ phones, as well as for desktop with the Web Portal.
● Secure health monitoring: LUCI users can choose to share their heart rate data with their team using either Google Fit* or Apple Health- Kit from day one. Based in Nashville, with R&D headquarters in Denver, Colo., LUCI was founded by Barry and Jered Dean—two brothers who were driven to innovate from personal experience and committed to create change for people living with disabilities.

For more info, visit luci.com.

“What started as a labor of love among family members has ultimately created a safer, more stable way for people with disabilities to navigate their world and stay connected to loved ones.”
— Barry Dean, CEO and founder of LUCI.

Grant to make STEM education more accessible to students with disabilities

Disability

FARMINGTON — The University of Maine at Farmington has received a National Science Foundation grant of $96,377 to engage rural students with disabilities in science, technology, engineering and math (STEM) learning through accessible makerspaces.

The innovative UMF incubator makerspace, Maine-Makerspaces for Abilities Driving Entrepreneurship (ME-MADE), is in the Mantor Library Learning Commons. It is available to the university community, with plans to be open to members of the public of all abilities and disabilities.

(Photo credit – Courtesy UMF)

A makerspace is an area that contains materials and tools for people to work together to learn, collaborate, create and share. They provide hands-on, creative ways to encourage students to design, experiment, build and invent as they engage in STEM.

Over a 16-month period of the NSF planning grant, UMF and its partners, the Maine Mathematics and Science Alliance and the Mt. Blue Middle School, will focus on creating a shared vision that will be supported by a range of activities, including, outreach to grades kindergarten to 12 schools throughout the state.

The NSF grant will build on the progress of a three-year, $300,000 grant received from the University of Maine System’s Maine Economic Improvement Fund in spring 2020. The MEIF is the state’s investment in University of Maine System research and development that benefits the people of Maine. The UMF project was recognized as having the potential to provide a positive economic impact for Maine by fostering entrepreneurship in the region.

Read the full article at Sun Journal.

Zappos Is Now Selling Single Shoes or Pairs in Different Sizes

Disability

group of people with disabilities standing together in a row modeling different shoes

Zappos Adaptive will provide an inclusive retail experience for people with physical differences and disabilities.

By Whitney Perry

Zappos, the mega-retailer that’s been purveying (mostly) footwear since 1999, has announced a new test program that allows shoppers to buy single shoes for either foot or build pairs in different sizes—a win for those with physical difference or disabilities who don’t need two shoes—or two shoes in the same exact size.

The first-of-its-kind Single and Different Size Shoes Test Program is under the Zappos Adaptive brand and has launched with a few key brands including Nike, Converse, New Balance, Stride Rite, BILLY Footwear, and PLAE. According to a statement, Zappos Adaptive hopes to add more as the program continues to develop, expanding the styles and colors available.

The program offers single shoe options in a variety of widths and prices—mostly between $17.50 and $85—and includes styles including sneakers and dress shoes for adults, kids, and toddlers. Extra bonus: free shipping and a full-year return policy.

“The Single and Different Size Shoes Test Program is very close to our hearts—we wanted our community to know that we heard them, and continue to listen and innovate based on their needs and wants,” said Dana Zumbo, Business Development Manager, Zappos Adaptive said in a media release. “Customer service is our number one goal, and we’re endlessly committed to ensuring that everyone feels comfortable and confident in their own shoe or shoes.”

Continue on to Glamour to read the complete article.

Photo Credit: Zappos

How The Pandemic Has Altered The Lives Of Children With Disabilities

Disability

Over the summer, Sherri Brady sent out messages to fellow parents of children with disabilities asking for help getting the word out about a virtual picnic she was organizing.

The answers she received back made it clear the families needed more than an online get-together.

Pandemic life had become overwhelming stressful, they told Brady, the Southern California representative for the Rett Syndrome Foundation. The parents were having a hard time keeping it together — supervising their kids’ online school and therapies, dealing with meltdowns, struggling

(Photo Credit – Martin do Nascimento/Resolve Magazine)

with financial problems from lost employment, worrying about their medically fragile kids falling ill, and mourning the loss of social activities and the outlet they provided.

“By the time I got to the third (parent), we were all in tears,” said Brady, whose daughter, Lauren, 23, has Rett Syndrome, which affects brain development. “The floodgates just opened. My heart broke for them. I felt awful because there really wasn’t anything I could do.”

The pandemic has been especially hard on families caring for children with disabilities. Since March many have had to contend with the loss of in-person support from teachers, aides, therapists, family members and home health workers. Some have gone months with no services at all.

Now, after 10 months of staying home, some of these families have settled into the new reality and are receiving better support. Some have found creative ways to adapt, parents and advocates said. But others, like the parents Brady talked to in July, are still struggling to get their children the help they need.

Read the full article at Disability Scoop.