With Cherished Event Canceled, Friends Bring Parade To Teen With Down Syndrome

Heidi Stevens, Chicago Tribune/TNS • December 11, 2020
Stock Photo by Gene Gallin on Unsplash.

CHICAGO — Ben Carnes, 17, starts counting down to Crystal Lake’s annual Festival of Lights parade on July 5.

“Parades are his thing, for sure,” said Julie Carnes, Ben’s mom. “There are two big ones in our town: Fourth of July, and as soon as that one happens, the talk shifts to the Santa Claus parade. He talks about them all year round.”


Ben has Down syndrome, and his love for parades inspired his parents to seek out the Kingpins, a drum line for students with special needs. In 2019’s Fourth of July parade, Ben got to ride a parade float and perform with his fellow drummers.


“There were definitely times when the thought of him getting up to perform in front of people was something I couldn’t imagine,” Julie Carnes said. “Now I would even go so far as calling him a ham sometimes. He gets so much joy from these parades.”


The Fourth of July parade and the Festival of Lights parade, which typically takes place the day after Thanksgiving, were both canceled this year because of COVID-19. Ben took the Fourth of July news hard. He refused to even acknowledge the Festival of Lights (aka the Santa Claus parade) cancellation.


“Maybe two weeks before it would’ve happened we started to plant the seed that it was canceled,” Julie Carnes said. “It was honestly as if he was just ignoring the fact. We thought, ‘Oh boy. This is going to be tough.'”


The Tuesday before Thanksgiving, Julie Carnes was texting in a group chat with friends and mentioned that Ben was struggling.


“Ben’s pretty carefree and always in a good mood,” Erin Snodgrass said. “Julie texted that he was sad and down and kept asking about the parade, even though they talked over and over about the parade being canceled.”


Julie Carnes asked if her friends knew of other light shows in the area. Her friends had another idea: What if they lined up and drove by Ben’s house one night to wave and honk? Maybe hold up some posters?


“Kind of mimicking what those birthday parades are like,” said Kerri Bowers.


“I remember Julie was like, ‘Let’s hold off and see how Ben does,'” said Laura Karamitos. “But, of course, we didn’t listen.”


Snodgrass, Bowers, Karamitos and Tammy Freund all work with Julie Carnes at Crystal Lake South High School. (Freund and Bowers are school counselors; Karamitos, like Carnes, is a social worker; Snodgrass is a speech language pathologist). The foursome hopped off the group text and got to work planning a parade.


Karamitos began the hunt for a Santa suit and a Santa. Bowers emailed some friends and neighbors. Snodgrass emailed the school’s student services department.


“Ben is in our functional living skills program, so he’s pretty well known around the building,” Snodgrass said. “And obviously Julie works there, so it’s like a family. When we need each other, we kind of just step up.”


Peter Karamitos, Laura’s husband, scored a Santa suit from a buddy. Snodgrass’ boyfriend, Jim Tomasello, procured a flatbed trailer and a bunch of inflatables.


“I asked him if we could put a couple blowups in the bed of his truck and he was like, ‘That’s not a parade! You have floats at a parade!'” Snodgrass said.


The initial plan to line up four or five cars quickly blossomed as word spread and everyone wanted in. They asked participants to meet in front of Bowers’ house at 5:30 p.m. on Sunday and caravan the mile or so to the Carnes’ house.


“I ended up directing traffic on both sides of the street,” Bowers said. “We had more than one car per family — you’d have each spouse in a car, teenage children in their own cars. We had several people there who had just lost family members to COVID and still showed up.”

Bowers estimated 26 cars lined up in all, with Santa, decked head-to-toe, leading the line.


“I was like, ‘You know you can probably just put the Santa jacket on,'” Karamitos told her husband. “He was like, ‘No, we’re going all out.’ I ended up painting his eyebrows white.”


Julie Carnes’ friends managed to keep the parade a secret from her, but they let her husband, Jeff, in on the plan so he could make sure everyone was home when the parade made its way to their street. At one point Sunday evening Jeff texted the friends to hurry and come over before Julie headed to the basement to work out.


“Kerri called me and said, ‘Hey, we need you to go outside,'” Julie Carnes said. “And in my mind I just thought her family was going to come by and drop something off. I had no idea what I was walking outside for.”


She and her husband grabbed Ben and his younger brother, Charlie, and headed out front.


“And there’s this tremendous parade,” she said. “So many people showed up — some of his teachers were there, my boss came, our former vice principal came, his P.E. teacher, his speech therapist, his occupational therapist.”


All driving by Ben’s house. In a festival of lights and inflatables and love.


“He’s a pretty happy and social guy in school,” Julie Carnes said. “Everyone kind of knows him because he’s always saying hi to everyone as he does his jobs in school. He brings so much joy to people, and I think that’s why so many people came.”


At every Fourth of July and Festival of Lights parade, someone in Ben’s family is assigned recording duties so Ben can rewatch the parade for the weeks and months that follow. Charlie captured Sunday’s parade for his brother, and Ben has watched it every night since.


“Some cars dropped out gifts,” Julie Carnes said. “Santa gave him a snow globe with Charlie Brown inside. And he got some balloons. He takes those balloons and that snow globe into his room every night to sleep.


“It still makes me cry,” she continued. “It was huge for him.”


And for the participants too.


“We all needed it,” Snodgrass said. “Just as much as Ben needed it, we all needed it.”


“It started as a small idea to help a friend out for 15 minutes and bring a smile to Ben’s face,” said Bowers. “And it just blew up, but with joy. His face when he saw Santa, it was such a joyful thing.”


“I got home and I was like, ‘I want to do this tomorrow,'” Karamitos said. “My husband was like, ‘I had no idea the impact that would have on me.'”


Ben has had to give up a lot this year, Julie Carnes said. His school is open for in-person learning, but he’s been learning remotely since spring because of some underlying health conditions. Most of his favorite activities, in addition to the parades, have been shelved.


“There have been so many losses for him,” Julie Carnes said. “And he’s a kid who’s very routine driven. So it just meant so much to us to have this to lift his spirits.”


Next year, she joked (hopefully), they’ll have to break the news gently that the citywide parade is back on, and the route won’t wind directly past their front yard.


Meanwhile, Ben has the memories (and the video) of a few glorious minutes on a chilly Sunday evening, when the best of humanity was on display.


© 2020 Chicago Tribune
Distributed by Tribune Content Agency, LLC


ADAPT activists drag themselves up the U.S. Capitol steps at the

PBS To Spotlight Story Behind The ADA

By Shaun Heasley • March 19, 2025
A documentary about the decades-long fight for disability rights culminating in the passage of the Americans with Disabilities Act is set to premiere.  The film “Change, Not Charity: The Americans with Disabilities Act” follows the twists and turns of a grassroots movement that pushed Congress to mandate curb cuts, ramps and much more to allow people with disabilities access to American life. Relying on archival footage and interviews with activists, lawmakers and other key players, the one-hour film chronicles how the disability rights movement organized and took to the streets to lobby for the ADA in the face of strong opposition. Things came to a head with the “Capitol Crawl,” when people with disabilities including many wheelchair users dragged themselves up the steps of the U.S. Capitol, leading to the 1990 signing of the ADA. “I think the message of this film is that civil rights for people with disabilities are just as important as the rights that everyone either has or should have in our society,” said the film’s director, Jim LeBrecht, who has a disability and who is known for his work on “Crip Camp,” an Oscar-nominated documentary [01] about the origins of the disability rights movement. “There was a coming together of many people, disabled and non-disabled people. Legislators from both sides of the aisle came together in a bipartisan fashion,” he said, referring to the ADA. “I hope that our film will remind our viewers and those in power, that preserving the civil and human rights of people with disabilities benefits everyone.” Narrated by actor Peter Dinklage, “Change, Not Charity: The Americans with Disabilities Act” will air on PBS March 25 at 9 p.m. ET on “American Experience.” Citations: IMDB Webpage for Crip Camp: https://www.imdb.com/title/tt8923484 Original Article: [ARTICLE] PBS To Spotlight Story Behind The ADA: https://www.disabilityscoop.com
Gov. Wes Moore (D) during a hearing last month.(Photo by Bryan P. Sears/Maryland Matters)

Governor’s supplemental budget helps fund disabilities agency by cutting other programs

By Danielle J. Brown • March 6, 2025
Paid family leave, energy projects, and state employee wages taking a hit as DDA, other programs gain in latest spending plan.
Image from https://www.ridehirta.com/invisibledisabilities

Local News Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs

By JT Moodee Lockman • February 10, 2025
BALTIMORE -- A proposed bill in Maryland would allow residents to disclose "nonapparent disabilities" on their driver's licenses or identification cards. Eric's ID Law, or HB707, [01] would require the Motor Vehicle Administration (MVA) to add a certain symbol to licenses, ID cards or moped permits indicating that the applicant has a nonapparent disability. The idea was proposed by a Maryland family during an appearance on ABC's "The View," The Baltimore Banner reported. [02] The Carpenter-Grantham family had the idea after the 2020 murder of George Floyd [03] which sparked protests across the nation. "I realized that I have an African American son with an invisible disability," mother Linda Carpenter-Grantham said during the TV appearance. The bill was introduced in the state Senate during the 2024 legislative session but missed a deadline in the House. The proposed bill would require the MVA to establish public outreach programs to educate the public about the new symbols or notations. The MVA would work with disability advocates to design the symbols. The MVA would be prohibited from sharing information about an applicant's disabilities. The bill would also prevent the MVA from asking an applicant to provide proof of their disability or reject an application because the listed disability does not match other documents associated with the applicant. Under the bill, the Maryland Police Training and Standards Commission and Department of State Police would have to immediately implement training for police interactions with those who have nonapparent disabilities noted on their IDs. The bill will be the subject of a hearing on Feb. 13 at 1 p.m. What is a nonapparent disability? According to the proposed bill, a nonapparent disability is a health condition that is not immediately obvious or visible, this could include developmental or intellectual disabilities. According to a study by the National Institutes of Health (NIH), [04] common nonapparent disabilities are anxiety and depression, Alzheimer's, deafness, post-traumatic stress disorder (PTSD), attention-deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), and diabetes among others. People with developmental disabilities are about seven times more likely to encounter law enforcement than neurotypical individuals, according to a 2001 study by the Department of Justice. [05] Citations: [WEBSITE] Legislation: Eric's ID Law , or HB707: https://tinyurl.com/4r5s8ntp [ARTICLE] Maryland mom and her autistic son pitch a disability safety bill on ABC’s ‘The View’: https://tinyurl.com/4nzukspm [ARTICLE] George Floyd's death sparks large protests, confrontations with police: https://tinyurl.com/263hk9sk [STUDY] Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations: https://tinyurl.com/bdexd9js [ABSTRACT] Contact with Individuals with Autism: Effective Resolutions: https://tinyurl.com/56d6yd44 [ORIGINAL ARTICLE] Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs: https://tinyurl.com/9k7z6nyh 
Advocates and members of the developmental disability community rallied Monday to demand legislators

‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring

By Konner Metz • February 7, 2025
Advocates and service providers on the Eastern Shore are joining Maryland’s disability community to call for rollbacks on projected cuts to funding for developmental disability services. Scott Evans, executive director of the Benedictine School in Ridgely, said the near $200 million in cuts to Developmental Disabilities Administration funding outlined in Gov. Wes Moore’s proposed budget would be the worst he’s seen in his 25-year career. “Bottom line, these proposed cuts of close to $200 million in state funds would be catastrophic to the community service providers, as well as the people we support and our employees,” Evans said. “It would literally set us back years in funding.” The proposed cuts come as the state faces a near $3 billion deficit. Some advocates from the Eastern Shore note they could reduce the choices available for families and people with disabilities. Jonathon Rondeau, president and CEO of The Arc Central Chesapeake Region, says families and people with developmental disabilities on the Eastern Shore already have a limited number of options. “There are less agencies providing services for people with disabilities on the Shore,” Rondeau said. “So if there is instability in the system, it can potentially reduce choice for people with disabilities.” Evans echoed the same sentiment, and added that the cuts could hurt Benedictine’s ability to stay competitive when hiring employees. In recent years, the nonprofit school and service provider has raised wages in an attempt to attract quality employees. “All that has been an investment we’ve made because of the funding that we have received,” Evans said. “Now to wipe that funding out basically overnight means that we’re stuck in a holding pattern.” THE CUTS In Moore’s budget proposal, his office notes that in addition to the $1.3 billion set for the Developmental Disabilities Administration in fiscal year 2026, the state will “better leverage federal funding and align Maryland’s program more closely with federal guidance and practices across other states.” Evans says it’s not clear how DDA would implement the cuts, though his team at Benedictine team is working to crunch the numbers. Evans said it would cost the school hundreds of thousands of dollars of funding at the very least. Specific cuts that worry advocates include reductions in “dedicated hours” funding for those in community living programs, as well as a $14.5 million blow to self-directed services funding. “Someone who is in their late 60s and retired and chooses to stay home every day rather than going to a day program won’t necessarily have that choice anymore,” Rondeau said regarding the dedicated hours cuts. “There won’t be the funding available for that. It’ll be difficult for providers such as The Arc to support someone who may have significant health issues and need to go to the doctors.” Karenna Jones of Salisbury worries that cuts to self-directed services will impact the ability for her family to take care of her 26-year-old son, Kenneth, who has a traumatic brain injury and lives at home. Jones says as long as she lives, she “would never put (her) kid in a provider home.” But large cuts in funding may leave her with no choice. “We might be forced to do that,” Jones said. “It’s not fair.” RALLY IN ANNAPOLIS With the uncertainty swirling, hundreds packed Lawyers Mall in Annapolis Monday night, protesting for legislators to reject the proposed cuts. Leaders at the Benedictine School and The Arc Central Chesapeake Region attended, as did Jones. “I’m always amazed at how quickly the folks within the disability community can rally around a cause, and a cause that means so much to them,” Evans said. “And also, to some extent, the positive response we’ve gotten from legislators about these cuts.” Jones said the rally — organized with just three days notice by a developmental disability coalition — was inspiring and beautiful. “We were saying, ‘Save our DDA services. Save it. Don’t leave us behind,’” Jones said. Citations : [ORIGINAL ARTICLE] ‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring: https://tinyurl.com/5ahffbu8
Advocates for people with developmental disabilities rallied at the State House Monday night in oppo

Hundreds of developmental disability advocates rally against proposed state budget cuts

By Danielle J. Brown • February 5, 2025
State Sen. Craig J. Zucker (D-Montgomery), who has a son with autism, promises to be community's ally.
Robert F. Kennedy Jr. testifies before the U.S. Senate Committee on Finance concerning his nominatio

Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances

By Michelle Diament • February 5, 2025
Despite concerns about his history promoting a debunked link between autism and vaccines, a key U.S. Senate panel advanced Robert F. Kennedy Jr.’s nomination to become the nation’s health secretary. The Senate Finance Committee voted 14 to 13 this week along party lines to send Kennedy’s nomination to the full Senate, which will have final say over whether he will take over the Department of Health and Human Services. The vote came after Sen. Bill Cassidy, R-La., said he would back Kennedy despite expressing reservations just days earlier over his anti-vaccine past. Kennedy has spent years blaming the increase in autism prevalence on childhood vaccinations. During confirmation hearings last week, Cassidy, a medical doctor, unsuccessfully pressured [01] Kennedy to concede that there is no link between autism and vaccines. But, Cassidy said he ultimately decided to back Kennedy after receiving “serious commitments” from the Trump administration. Specifically, Cassidy indicated that he’s been assured that the Centers for Disease Control and Prevention will not remove statements on its website highlighting that vaccines do not cause autism. Kennedy also committed to “work within current vaccine approval and safety monitoring systems and not establish parallel systems” and “maintain the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommendations without changes,” Cassidy said. While Kennedy’s nomination is not guaranteed, Cassidy had been viewed as a significant question mark and his support will ease the path to full Senate confirmation. President Donald Trump has said [02] that he’s “open to anything” when it comes to investigating the increase in autism prevalence in recent decades and he’s suggested that Kennedy would have leeway to look into the causes of autism including the long-discredited connection between autism and vaccines. “20 years ago, Autism in children was 1 in 10,000. NOW IT’S 1 in 34. WOW! Something’s really wrong. We need BOBBY!!! Thank You! DJT,” Trump posted to social media just before the Senate committee met to vote this week. In fact, the latest CDC estimates suggest 1 in 36 children [03] have autism compared to 1 in 150 in 2000. Kennedy’s nomination is raising concerns for several national autism and disability organizations. A dozen groups including the Autism Society of America, the Autistic Self Advocacy Network, the National Association of Councils on Developmental Disabilities and The Arc of the United States put out a statement ahead of Kennedy’s confirmation hearings saying that vaccines do not cause autism. “Perpetuating myths linking vaccines to autism does a disservice to the autism community by distracting from their pressing healthcare needs,” the groups said. Instead, the organizations indicated that policymakers should focus on actual needs in the autism community such as access to health care, mental health services, education and more. “The Autism Society is still very disturbed that Mr. Kennedy has not clearly stated that vaccines are not linked to autism,” Christopher Banks, president and CEO of the Autism Society of America, said after Kennedy’s nomination advanced. “Any direction to reinvestigate debunked myths, will reverse progress, and deter funding that addresses healthcare inequities and services that the autism community needs now.” Citations: [ARTICLE] HH S Nominee RFK Jr. declines to reject vaccine autism link: https://tinyurl.com/mkfpb32s [ARTICLE] Trump signals his administration will investigate debunked link between vaccines and autism: https://tinyurl.com/334jkspd [ARTICLE] Autism now affects 1 in 36 kids CDC says: https://tinyurl.com/3m5hve86 [ORIGINAL ARTICLE] Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances: https://tinyurl.com/jmephrju
rom left, Laura Howell, CEO of Maryland Association of Community Services; Ande Kolp, executive dire

Advocates ask to be ‘at the table’ amid talks of budget cuts to disability agency

By Danielle J. Brown • January 27, 2025
Despite some conversations between state officials and the disability community, advocates say they’re not being heard.
A public service announcement from Autism Speaks offers information about the signs of autism. (Ad C

Autism Affects More Than 60 Million Worldwide, Study Finds

By Shaun Heasley • January 15, 2025
New estimates show that 61.8 million people around the globe have autism and that the developmental disability is among the most common health issues facing youth. As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published [01] recently in the journal The Lancet. Autism was twice as likely to affect males versus females and there was high prevalence among young people, with the condition ranking in the top 10 causes of non-fatal health burden for those under age 20, the study found. The findings are based on a review of studies and data that was conducted as part of the Global Burden of Diseases 2021 Study, which is considered the largest scientific effort to measure the prevalence and impact of various conditions. The autism rate identified in the new study “substantially changed estimates” from the last version of the report in 2019, but the researchers attributed the increase to updates in their methodology, in particular excluding studies that were likely to undercount prevalence. Researchers identified variances in prevalence by geography with autism affecting 1 in 163 people in tropical Latin America versus 1 in 65 people in the higher-income Asia Pacific region. “There are many factors contributing to this wide range, including varying exposures to risk factors, cultural variation, behavioral norms, or screening tools and diagnostic tools being used in those locations, and also how people are responding to these surveys, or whether they even choose to respond or participate in the survey in the first place,” said Dr. Damian Santomauro, an affiliate assistant professor at the Institute for Health Metrics and Evaluation at the University of Washington who led the study. “Work is currently ongoing to explore ways to quantify and correct for these differences so we can paint the most accurate picture of the prevalence of autism globally.” The latest estimates from the Centers for Disease Control and Prevention [02] indicate that 1 in 36 American children are on the autism spectrum. That figure is based on data collected on 8-year-olds in 2020. By contrast the rate was 1 in 150 in 2000. Experts attribute the rise in diagnosis to greater awareness of the developmental disorder. Those behind the new study say they hope their findings will prompt better policies and greater supports for individuals with autism around the world. “The prevalence and health burden of autism persisted across the lifespan,” Santomauro said. “These findings highlight the need for early detection and lifelong supportive services for autistic individuals.” Citations: [ARTICLE] The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021: https://tinyurl.com/4xwk9ebm [ARTICLE] Autism now affects 1 in 36 kids, CDC says: https://tinyurl.com/3m5hve86  [ORIGINAL ARTICLE] Autism Affects More Than 60 Million Worldwide, Study Finds: https://tinyurl.com/24fz2bs3

Investing in community providers is key to brighter future for those with disabilities

By Karen Lee • January 2, 2025
The infrastructure to train and keep direct service providers for those with intellectual and developmental disabilities has been neglected, resulting in a crisis that must be addressed, writes Karen Lee. Photo by Getty Images.
Walmart is offering customers with disabilities the option to get assistance from a visual interpret

Walmart Enhancing Accessibility For Shoppers With Disabilities

By Michelle Diament • December 16, 2024
The nation’s largest retailer is piloting a new program aimed at enabling people with disabilities to shop more independently. Walmart is providing free access to visual interpreters at its stores and on its website. The company is partnering with Aira, a third-party service, to connect customers with sighted interpreters who can relay detailed information in real time about their surroundings, help them navigate or read signage, labels and more. To use the service, individuals stream live video of their surroundings through the Aira mobile phone app. Visual interpreters are trained to offer objective feedback so that users can make independent choices, Walmart said. And, since the retailer is offering complementary access to the service, company officials said that customers will be able to take as long as they need to wade through their options. Gayatri Agnew, head of Walmart’s Accessibility Center of Excellence, said that offering access to Aira is just the company’s latest move to improve the shopping experience for people with disabilities. She cited the recent addition of sensory-friendly shopping hours, making Caroline’s Cart available at every store and expanding Walmart’s adaptive product lines. “The reality is, we have tons of shoppers with disabilities who we want to make sure are having as good, if not better, of a shopping experience with us as someone who doesn’t have a disability,” Gayatri said. 
Show More