Autism & Safety Toolkit from Autistic Self Advocacy Network

The Autistic Self Advocacy Network (ASAN) has made available a online toolkit, the following is as posted on their website. For more resources, news, advocacy, visit:  http://autisticadvocacy.org/

Autistic people have the right to be safe and live independently in our communities. We also face significant threats to our safety, including higher rates of abuse, institutionalization, suicide, and police violence. Too often, autistic voices have been erased from conversations about autism and safety. That’s why ASAN is proud to announce the release of our Autism & Safety Toolkit – the first toolkit made by autistic self-advocates, focusing on safety issues that affect us and the tools to deal with them.

This toolkit provides information about:

• Abuse and neglect
• Bullying
• Interactions with police
• Mental health
• Safely navigating the community

Many people think that people with developmental disabilities must give up our autonomy, or be separated from the broader community, in order to be safe. But in reality, we are safest when we are included in our communities and empowered to take control of our own lives. The toolkit describes safety risks we face, discusses different ways to address them, and debunks myths about safety that are sometimes used to curtail our independence and access to the community.

The Autism & Safety Toolkit comes in three sections. Click on the title of any section to download it as a screenreader-accessible PDF.

• Research Overview on Autism & Safety
• Safety Tips for Self-Advocates
• Ways for Family Members to Support the Safety of Autistic People

This toolkit was made possible thanks to generous support from the WITH foundation.

R. Kelly Bullies Autistic Fan, Posts Video, Then Later Apologizes

R. Kelly bullied an autistic fan into singing one of his songs, then ridiculed him and accused him of being high on Percocet -- now the singer might have a lawsuit on his hands.

Lenny Felix / R. Kelly

TMZ reports | Nov. 15, 2017                                                                                                         
Lenny Felix was out in Hollywood when he ran into Kelly outside a nightclub. You can tell from a video Kelly shot and posted, the 27-year-old fan was star struck. The singer and his crew responded by baiting Lenny into singing, "I Believe I Can Fly."

Instead of showing warmth or appreciation, Kelly looked into the camera and mockingly sang, "I believe that you high ... smoking on that Percocet."

Kelly's pals burst into laughter, but Lenny's family was shocked and feel he was victimized. They tell us Lenny's reaction to the clip was, "I don't want him to think I'm dumb. Do you think he was making fun of me?"

His mom is heartbroken, and says the family has met with an attorney. You'll recall ... 50 Cent, Shaquille O'Neal and Waka Flaka have been sued after mocking fans with disabilities.

We reached out to Kelly's camp, and got no response. However, he did remove the video of Lenny from his social media. 

TMZ video.

5:00 AM PT -- R. Kelly posted a video apology after we called for comment, and in it he explains he did not think Lenny had Autism the night they met.

Kelly says he thought Lenny was drunk, and security had to keep him back because he got a "little too close" ... but says "it was all good" and he happily engaged the fan as he sang.

http://www.tmz.com/2017/11/15/r-kelly-makes-fun-autistic-fan-smoking-percocet/?adid=hero5

Special Olympian Tommy Shimoda into Chicagoland Hall of Fame

 

Tommy Shimoda,with his ESPY award.

Mt. Greenwood native and Gold medal-winning speed skater Tommy Shimoda is a member of the Chicagoland Hall of Fame.

CHICAGO, IL -- Tommy Shimoda, the Mt. Greenwood speed skater who won a Gold medal in the Special Olympics earlier this year is part of a Chicagoland Sports Hall of Fame class that includes the likes of Tom Ricketts, Jonathan Toews, Kerry Wood and Hawk Harrelson. Shimoda became the first Special Olympics athlete ever to be inducted into this hall of fame during a Monday night ceremony at Wintrust Arena in Chicago.

Shimoda was also presented a keepsake, commemorative Wheaties Cereal box (photo) with his image, compliments of General Mills Corporation. General Mills included a personalized letter that read, in part: "Your gold and bronze speed skating medals in the Special Olympics World Games in Austria proves that you are a true champion. You beat the odds and pushed the limits. You challenged yourself, and strive to be your personal best."

Shimoda, who is (autistic) non-verbal and speaks with the aid of a handheld computer, has been a Special Olympics Chicago athlete at Mt. Greenwood Park since age 8. He plays more than 20 sports.

Article by Tim Moran for the Beverly Patch - Oct 3, 2017

https://patch.com/illinois/beverly-mtgreenwood/tommy-shimoda-inducted-chicagoland-sports-hall-fame

Young People with Severe Autism Languish Weeks or Longer in Hospitals with Nowhere To Go

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals because of a lack of community treatment programs able to deal with their outbursts, according to interviews with parents, advocates and physicians from Maine to California as well as federal and state data.

solid article by Christina Jewett, Kaiser Health News | Sept. 2017                                               
These young people - who may shout for hours, bang their heads on walls or lash out violently at home - are taken to the hospital after community social services and programs fall short and families call 911 for help. Once there, they sometimes are sedated or restrained for long periods as they wait for beds in specialized facilities or return home once families recover from the crisis or find additional support.

Although the data on extended hospital stays are limited, national numbers on people with an autism diagnosis who were seen in hospital ERs nearly doubled over five years, to 159,517 in 2014, according to the latest figures from the federal Agency for Healthcare Research and Quality. The total admitted for a behavioral or medical issues also nearly doubled, to 26,811 in 2014.

That same year, California recorded acute-care hospital stays of at least a month for 60 patients with an autism diagnosis. The longest were 211 and 333 days.

"As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental-health needs in children and adolescents with autism," said Aaron Nayfack, a developmental pediatrician at Sutter Health's Palo Alto Medical Foundation in California who has researched the rise in lengthy hospitalizations. "And we have nowhere near the resources in most communities to take care of these children in home settings."

Sixteen-year-old Ben Cohen spent 304 days in the ER of Erie County Medical Center in Buffalo. His room was retrofitted so the staff could view him through a windowpane and pass a tray of food through a slot in a locked door. His mother, who felt it wasn't safe to take him home, worried that staff "were all afraid of him . . . [and] not trained on his type of aggressive behaviors."

The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the challenges of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that fell short long ago, exacerbated by the 2008 recession, when local, state and federal budget reductions forced sharp cuts in developmental and mental-health services.

The hospital "is the incredibly wrong place for these individuals to go in the beginning," said psychiatrist Michael Cummings, associate medical director at the Erie County facility. "It's a balancing act of trying to do the . . . least harm in a setting that is not meant for this situation."

Autism is a neurodevelopmental disorder typically diagnosed at a young age and characterized by impaired communication, difficulty with social interaction and repetitive behaviors that fall along a spectrum of mild to severe.

Adolescents and young adults with severe autism may still have the mental age of a child, and short-term care to stabilize those in crisis who are nonverbal or combative is practically nonexistent. Longer-term care can be almost as hard to find. It must be highly specialized, usually involving intensive behavioral therapy; someone with severe autism gets little benefit from traditional psychiatric services.

In New Hampshire this summer, 22-year-old Alex Sanok spent a month in Exeter Hospital after he became violent at home, breaking windows and hurling objects at walls. His mother called 911, and paramedics spent half an hour trying to calm him before restraining him.

At the hospital, his wrists and ankles were strapped to an ER bed for the first week, and he spent several more weeks in a private room before he could be transferred, according to his mother, Ann Sanok. State agencies that handle developmental disabilities and mental health offered little help, she said.

As the days passed, she and her husband wondered: "What if [Alex] escalates again; what are we doing to do? We were getting no answers. Everyone seemed to kick the can down the road."

Exeter Hospital said in a statement that its policy is not to use restraints unless there is an "imminent threat to patient or staff safety" and that any use is reviewed hourly. Sanok was moved in June to a special-needs residential school in Massachusetts, where his mother said he is doing well.

The federal government does no routine tracking of how autism is treated in ERs, but many experts say the problem of lengthy and inappropriate stays is nationwide and growing. Kaiser Health News identified some of the more extreme cases through interviews with autism and disability advocates, physicians and families in New Hampshire, New York, California and six other states - Maine, Connecticut, Rhode Island, Maryland, Michigan and Arizona.

Nancy Pineles, a managing attorney with the nonprofit group Disability Rights Maryland, said a group home took one young adult to a Baltimore ER earlier this year after he hit a staff member. And that's where he remained for several weeks before the hospital moved him to a room in its hospice wing, she said - not because he was dying but because there was nowhere else for him to go.

Such cases have been "on the increase," Pineles said. "People with autism and more intense behavioral needs are just being frozen out."

In Connecticut, the head of the state's Office of the Child Advocate told lawmakers during a hearing on disability issues in May that the problem had reached a "crisis" level.

Private insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that people ages 12 to 21 with autism are four times likelier to go to the emergency room than peers without autism. They also are 3 1/2 times more likely to be admitted to a hospital floor - at which point they stay in the hospital nearly 30 percent longer.

The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits for a mental-health crisis almost doubled from 2005 to 2013.

Tyler Stolz, a 26-year-old woman with autism and a seizure disorder, was stabilized after a few weeks in a Sacramento hospital. Yet she remained there for 10 months, according to Disability Rights California, an advocacy group that described her case in its 2015 annual report.

Ultimately, Mercy San Juan Medical Center went to court to demand that Stolz's public guardian move her. Although her conditions no longer required her hospitalization, they still "represent dangers to defendant and possibly to others if she were discharged to the community," the facility contended. "There is no safe place for the client to go."

The advocacy nonprofit helped place Stolz at a Northern California center that offered intensive behavioral therapy, said Katie Hornberger, the nonprofit group's director of clients' rights. The medical center did not respond to a request for comment, but two years after an investigator found Stolz in a bed covered by a mesh tent, the case remains vivid in Hornberger's mind. "I don't believe we put people in cages," she said.

Across the country in Buffalo, Mary Cohen struggled to care for her teenage son. Ben's 6-foot-1, 240-pound body dwarfed her petite frame.

She began locking herself in a basement room to escape his outbursts, while still monitoring him via cameras she had installed throughout the house to make sure he was safe. As the lock-ins became more frequent, she realized, "I can't keep going like this." She found a nearby group home, covered by his disability and Medicaid payments, that could accommodate Ben.

On Aug. 1, 2016, it all imploded. Medication changes and an ear infection triggered a rage, Cohen said, and Ben hurt one of the staff members. Someone called 911, he was taken to the psychiatric emergency room at Erie County Medical Center, and a waiting room there is where he lived until early this summer.

Though a 304-day stay is a record there, cases like this have surged at the hospital, said Cummings, its executive director of behavioral health, who worked on Ben's case. They spurred him to launch a grant-funded home-visit program aimed at keeping families with autistic children from reaching a breaking point. He and his clinical partner have counseled nearly 400 families to help manage their youngsters' medications and find services, and their ER visits have dropped by nearly 50 percent, he said.

A bed finally opened up for Ben at Baltimore's Kennedy Krieger Institute - a private, highly regarded facility that offers intensive therapy, psychiatry and family coaching. Cohen held out for a placement there, hoping the staff could turn Ben's behavior around. The teen and his mother made the 360-mile trip in June by ambulance and plane.

"I want to do the right thing for him," Cohen said. "Because one day I'm not going to be there for him."
---
Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

(c) 2017, Kaiser Health News

Travelers with Autism Changing The World

Wanderlust doesn't discriminate. It creeps up on lifelong homebodies, blossoms in the hearts of grumpy teenagers and pushes those who "can't afford it" out the door, bank accounts be damned.

informative article by Starre Vartan, for CNN • September 26, 2017                                          
Because traveling the world is for everyone that means that none of us should be surprised to hear that those on the autism spectrum get itchy feet, too.

When thinking about travel it's important to understand that autism isn't a monolithic diagnosis. "Autism is a diverse disability and everyone's needs are different," says Zoe Gross, director of operations at the Autistic Self Advocacy Network.

Autism, as defined by the US Centers for Disease Control and Prevention, is "a developmental disability that causes social communication and behavioral challenges." An estimated one in 68 children are affected, with the rate higher in boys than girls, according to the Centers for Disease Control and Prevention.

Depending on personality, where they are on the autism spectrum, and how their particular disability manifests, each autistic traveler will have different needs and challenges. Some might be physical, others might be cognitive, or a mix of the two.

Examples include trouble dealing with unexpected routine changes; finding acceptable food; sensory issues with loud spaces or bright lights; and physical disabilities from minor to significant.

"Travel with service animals might be hard especially in other countries where they have different rules for animals," says Gross. And of course, just like anyone, autistic travelers will have varying interests, passions and bucket-lists.

Travel can be especially onerous for people on the spectrum -- but it can be especially enriching, too.

Making the world more connected
"Travel is often topic-oriented, so, for example, if someone is interested in history and historical sites and they have difficulty with abstraction, seeing what they've learned about in real life can be really meaningful and rewarding," says Gross. "For someone who enjoys languages, which some autistic people do, that can be exciting too," she says.

Even though new experiences and routines can be tough to navigate, autistic travelers might find the planning and organizing aspect of a trip to be really enjoyable, in a way that most others might find annoying or tiresome.

Another foreign travel benefit: It can be particularly relaxing to those autistic people who find navigating their own culture exhausting.

Jennifer Malia is an English professor at Norfolk State University in Virginia who writes and publishes stories as Mom with Autism. She traveled both before and since her diagnosis with autism spectrum disorder, and she says she often feels more comfortable abroad than at home.

"No one expects you to be completely familiar with cultural norms or to speak perfectly in foreign languages when you're abroad," says Malia. "This made it easier for me to communicate as an autistic woman."

Gross backs up the idea: "Some countries have easier cultural norms for people with autism. You can relax, because if you need several tries to understand something, people understand because you're a tourist."

With some minor adjustments, museums, hotels, flying, and even activities can be enjoyed by adults and kids on the autism spectrum. See below for some of the smartest ideas:

Flying
The tight spaces, strange noises, and general unpleasantness of flying can be a perfect storm for those with an autism spectrum disorders.

It doesn't help that the general public can perceive common autistic behaviors to deal with that discomfort (like hand-flapping, vocalizations or pacing) as dangerous or disruptive. In 2015 a United Airlines plane was diverted and parents traveling with their 15-year-old autistic daughter were kicked off a flight. Flying is a particular challenge as it's not really something that can be understood or practiced in advance, which is one of the best ways for autistic people to prepare for new situations.

That's why for the past four years, Autism Speaks has worked with JetBlue on Blue Horizons for Autism, a travel program that allows people with autism to practice the full airport experience.

"At Blue Horizons events, we work with JetBlue, TSA and airport personnel to make the experience as realistic as possible. Guests check in at the ticket counter, receive real boarding passes with seat assignments, and go through the full TSA security screening where all of the usual rules apply," says Alexandra Watters, director of family services projects and content at Autism Speaks.

Practice boarding the plane and even taxiing around the tarmac helps autistic travelers work through their particular challenges, with trained airline employees and volunteers on hand to help. More than 3,000 people in 11 cities have already participated, with more planned for the fall.

The TSA also has a separate program, Wings for Autism, that is similar -- a run-through that focuses on the oft-disturbing security protocols and travel too.

Museums
Museums can be particularly interesting to autistic people for the variety of learning opportunities they can provide: "in a museum, learning can be verbal or nonverbal; hands-on or hands-off; fast or slow; social or solitary; loud or quiet; directed or inquiry-based.

"In a museum, lack of verbal skills need not stand in the way of discovery, learning, or passion. Lack of social skills need not stand in the way of achievement," writes Lisa Jo Rudy on the Autism in the Museum blog, a "clearinghouse of best practices [...] about making museums welcoming and inclusive for people with autism and their families."

Some museums provide prep and sensory-specific details for attendees with autism, such as New York City's Metropolitan Museum of Art, which has six social narratives for visits. These are "printouts written in simple languages with pictures that list out the steps for visiting [...] so people can look at it and practice it in their heads," says Gross.

The Met also provides a sensory map that shows busier and quieter areas, displays with low-light and areas with natural light, all superimposed over a map of exhibits. Preparing in advance means fewer surprises about lights and sounds, knowledge of quiet spots, and a better experience.

Many other museums provide similar details, or have special programs, like the Dallas Museum of Art, the Intrepid Museum, the Boston Children's Museum and more.

Places to stay
Independent travel agents such as ASD Vacations, A Million Senses, and The Guided Tour specialize in hotels for autistic people or parents with kids on the autism spectrum. They can be a great resource since agents are familiar with floor plans, resort or hotel amenities, types of rooms, and will be more able to answer specific questions.

Some resorts welcome autistic travelers specifically: Tradewinds Resort in St. Petersburg, Florida is one of five that has been designated "autism friendly" by the Center for Autism and Related Disabilities (CARD). To qualify, employees underwent CARD's training program. Beaches resorts, with locations throughout the Caribbean, also offer families with children with autism specialized activities, services and custom dining options via their autism-friendly kids' camps.

Launched in June 2015, Accomable is an Airbnb-style service for people with disabilities of all kinds. The co-founder of the site, Srin Madipalli, loved to travel but, as a wheelchair-user, he hated how much prep work he had to do to ensure he would be able to access places to stay.

The site now has more than 1,000 listings in more than 60 countries, all searchable by price, location, type of space and accessibility. "I want our users to have a wide range of genuine choices and be able to build any kind of travel experience they want, irrespective of their background or physical ability," says Madipalli. Though its searchable features focus on physical disability, not sensory sensitivities -- it's not built specifically for autistic people -- they or their caregivers could find it useful depending on needs.

Theme parks
While they can be high-stimulation, which some with autism seek to avoid, plenty of autistic kids and kids-at-heart have a theme park high on their travel wish-lists: A number have programs to make the long days a little easier for both adults and children.

Disney is seen as a leader: Their parks and resorts have a comprehensive program that includes attraction details with information about lights, sounds, smells, bumps and surprises; special assistance to those with light and sound sensitivity; passes so there's less standing on line; and dozens of break areas in the parks.

Great America and Six Flags parks also have skip-the-line ticketing and other assistance, and the latter's Great Escape location also has an Autism Awareness Day (actually multiple days).

Legoland in Florida has worked with Autism Speaks to be super-supportive of sensory challenges, and every staff member has been trained to understand special needs.

Some smaller parks, such as the shady, nature-filled Dollywood in Tennessee, are a less hectic choice generally, and they also have a calming room on-site, and railroad-themed Edaville Family Theme Park (an hour outside Boston), has a specially designed quiet bathroom and other amenities.

Cruises
Autism on the Seas has been working with Royal Caribbean International since 2007. They specially staff cruises throughout the year on popular lines including Royal Caribbean, Celebrity, Norwegian, Disney and Carnival Cruise Lines.

In addition to being able to board early, educated, trained, and background-checked staff accompany cruisers and allow guests to use the ship's facilities and entertainments in an "accommodated and assisted manner." They also have lower-touch programs available for more experienced or independent travelers.

Other fun stuff
Since 2007, AMC Theatres has offered their Sensory-Friendly Films events at more than 50 theaters across the United States, where, their site promises: "we turn the lights up, and turn the sound down, so you can get up, dance, walk, shout or sing!" Family-friendly film nights are held on the second and fourth Saturday each month and there are Tuesday evening showings for mature audiences.

Like to ski? At Copper Mountain Resort in Breckenridge, Colorado, autistic kids can try an adaptive skiing lesson, which includes equipment rental and a lift ticket.

Some golf and swim centers also have similar programs. Adults and kids can decorate ceramics at autism painting events that are designed for smaller groups and feature lower lights. You can check out other ideas at the Autism Friendly Events page at Autism Speaks, which includes events in many cities throughout the US.

"Normally, I crave routines and like to know what to expect, so sometimes it's difficult to have the courage to travel somewhere new without knowing what it will be like," says Malia. The travel bug doesn't care what you look like or about what other people think of your choices -- when it bites, you're bitten.

Malia loves seeing the world, having gone on safari in Kenya, hiked a Costa Rican rainforest and snorkeled with sharks in the United Arab Emirates. And now other travelers like her have a little extra assistance to go even further.

http://www.cnn.com/travel/article/travelers-with-autism/index.html

AUTISTIC TEEN'S DEATH IN CHICAGO PUBLIC SCHOOLS (CPS) POOL HEIGHTENS QUESTIONS OF SPECIAL ED CARE

Sept, 2017 - Chicago - Last winter, as questions swirled about Chicago Public Schools’ ability to care for its special needs students, an autistic teen entered a pool at Kennedy High School and drowned during gym class.

Fourteen-year-old Rosario Gomez (photo) didn’t know how to swim, wasn’t wearing a lifejacket and had significant problems communicating. Just minutes after he entered the water, a lifeguard pulled his body from the pool’s deep end.

Now, as a new school year has just begun, the circumstances that led to the drowning continue to be mysterious and underscore issues about the school district’s ability to care for its highest-need students. Questions remain about how no one noticed Rosario was no longer in the shallow end of the pool even though six school employees were on duty.

This is a very detailed informative article from the Better Government Association (BGA) :

FOR THE FULL ARTICLE: CLICK HERE

This story was written and reported by the Better Government Association’s Katie Drews and Lauren FitzPatrick with the Chicago Sun-Times.

Sept. 2017 - ABC7 News Chicago reporter Stacey Baca also reported on unfortunate death of Rosario Gomez. 

- shared from ABC7 Eyewitness News.

Illinois Jury Finds ex-Little City Worker David Sutton Guilty of Striking Disabled Teens with Autism

A jury found a former Little City employee guilty Friday of striking two teens who have autism, rejecting his argument that it was self-defense.
Daily Herald article by Christopher Placek | June 30, 2017                                                                

  

David Sutton

It took the jury of six men and six women 1½ hours to render the verdict, convicting 54-year-old David Sutton on two counts of aggravated battery. Sutton, of Round Lake, could face a sentence of up to 10 years in prison.

Sutton, who took the stand, and his attorneys claimed during the three-day trial that he acted in self-defense when he struck the teens, at the time ages 14 and 16, on Sept. 27, 2015. But prosecutors argued Sutton, a former life skills instructor at the Palatine residential center for children with developmental disabilities, knowingly caused both teens bodily harm and physical pain.

In the case of the 16-year-old, Cook County Assistant State's Attorney Karen Crothers said, Sutton provoked the Little City resident by poking him twice on the back while seated on a couch. Sutton testified Thursday he "tapped" the teen to try to calm him down.

"You can't instigate violence, then claim self-defense," Crothers said during closing arguments Friday morning. "This is a case about a bully."

Defense attorney Alan Lenczycki argued prosecutors' case was "overwrought and overcharged," saying his client was being "scapegoated" for bad placement and treatment of the 16-year-old by Little City.

Prosecutors replayed for the jury video surveillance of Sutton's altercations with the two teens. In one clip, the 16-year-old grabbed hold of a female employee's hair, after which Sutton breaks the grasp, then pushes the teen against one wall, then another, and holds him in what Sutton called a "wall restraint."

Later, the teen comes after Sutton, who pushes and punches him in response. Sutton and the teen later scuffle and end up on the ground, where Sutton puts the teen in a "floor restraint," he testified.

Assistant State's Attorney Susanne Groebner said Sutton went "above and beyond" what he was trained to do.

Lenczycki said the response of the 16-year-old was one of many documented instances of physical aggression toward the staff. Lenczycki also told jurors there was reasonable doubt that the teen's black eye was from the altercation with Sutton.

"He fights with people all the time," Lenczycki said.

Another video clip shows Sutton grabbing the 14-year-old's head and pushing it down on a couch -- an act Sutton said was "just playing around."

Sutton was placed on administrative leave and fired a week later. He is now in custody and is due back in court July 19 for post-trial motions.                                                                                    

http://www.dailyherald.com/news/20170630/jury-finds-ex-little-city-worker-guilty-of-striking-teens
RELATED Daily Herald article: 2 Ex-Little City Workers Hit Boy, 11, With Bucket: Sheriff's Office

Rosa's Law : legislation replacing the word "retarded" with “intellectual disability” throughout federal policy : a retrospective

[Archive Courtesy Photo. Rosa Marcellino, 9, second from left, is shown with siblings Maddie, 13, Gigi, 11, and Nick, 15, during the Special Olympics state games. Rosa has Down syndrome and is the inspiration behind “Rosa’s Law” that removes the terms "mentally retarded" and “mental retardation" from federal education, health and labor laws]

Rosa's Law :

A journey that began as one Maryland family’s battle for respect and acceptance for their daughter and sister, Rosa, became a significant milestone in the ongoing battle for dignity, inclusion and respect of all people with intellectual disabilities when United States President Barack Obama signed bill S.2781 into federal law on October 5, 2010.

Known as “Rosa’s Law,” the law removes the terms "mental retardation" and "mentally retarded" from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.”

The bill, championed by Sen. Barbara Mikulski (D-Md.) and Sen. Mike Enzi (R-Wy.), garnered unanimous support in passing both the House of Representatives and the Senate. Rosa’s Law was commemorated in a White House ceremony on October 8 with an 11 member delegation of Special Olympics athletes, leaders and self-advocates present to celebrate the milestone. See the list of delegates.

"Respect, value, and dignity – everyone deserves to be treated this way, including people with intellectual disabilities," said Dr. Timothy P. Shriver, Chairman and CEO of Special Olympics. "The President’s signature and the unanimous support of both the House and Senate show that our elected officials understand and embrace this ideal. I congratulate Sen. Mikulski and Sen. Enzi for their vision and sensitivity to people with intellectual disabilities everywhere.”

"For far too long we have used hurtful words like 'mental retardation' or 'mentally retarded' in our federal statutes to refer to those living with intellectual disabilities," said Sen. Mikulski. "Rosa's Law will make a greatly-needed change that should have been made well before today — and it will encourage us to treat people the way they would like to be treated."

Special Olympics, as the world’s largest movement dedicated to promoting respect and human dignity for those with intellectual disabilities, has long championed the use of people first language. In 2004, in response to its athletes' call for change, the Special Olympics International Board of Directors adopted a resolution to update the movement's terminology from "mental retardation" to "people with intellectual disabilities." In 2008, Special Olympics launched the website www.r-word.org to combat the inappropriate use of the R-word in common usage and helped lead protests against media use of the word in response to the film ‘Tropic Thunder.' In 2009, the youth-led "Spread the Word to End the Word" campaign launched with rallies in K-12 schools and universities around the country, enlisting young people to combat use of the word and collecting more than 100,000 signatures to pledge inclusion and respect towards all people.

In order to learn more about youth experiences with the R-word, the Special Olympics Global Collaborating Center at the University of Massachusetts Boston, and Harris Interactive®ii worked together to design an online survey. In this online survey, youth across the U.S. were asked questions about the R-word, including whether they have ever heard the word, and if so, how they reacted to hearing it. Over a thousand youth between the ages of 8 and 18 responded to the online survey. A bulleted summary of some of the results is below, or you can read the full results of the survey.

• •92% of young Americans (ages 8-18) report having heard the R-word used, while 36% have heard the word used specifically toward someone with an intellectual disability.
• •Only 50% of those who heard it used to refer to someone with an intellectual disability told the person who used the word that it was wrong to do so.
• •The study also confirmed that as young people progress from elementary school, to middle school and then on to high school, they are less likely to feel bad or sorry for the person being picked on, and more likely to laugh, do nothing, and/or not care.

Youth leaders like Spread the Word to End the Word campaign co-founders Soeren Palumbo and Tim Shriver have used viral and grassroots methods to garner support amongst their peers and in schools across the United States and around the world. By highlighting the pervasive use of the R-word in mainstream media and reaching out to people like Bill O’Reilly when the R-word is used on his show, the campaign has begun to have a noticeable impact. FOX adopted the campaign’s ideals when they edited out multiple uses of the R-word in the movie “Miss March” and replaced it with alternatives in the DVD release. The F/X network now includes the R-word as one of three words that are not allowed to be broadcast. MTV has also embraced the campaign by bleeping out the R-word just like any other curse word or slur in shows like “The Real World” and “Teen Mom.”

“Meaningful change is often slow to occur, but we’ve found that once we are able to get our message in front of people, whether they’re a neighbor, a friend, a studio executive, celebrity or politician, they generally get it,” said Palumbo. “It comes down to the human connection we all share. No matter where we come from, what our background is, we are all human, and we all deserve that requisite respect.”

“What people, I hope, are starting to see is that making their pledge to stop using the R-word is just the beginning of a whole new and amazing world that opens up to them,” said Shriver. “Once you open your heart to people with intellectual disabilities you’re going to want to do more and that’s where Special Olympics comes in – it’s the next level of activation. Young people today are desperate to make change, to channel their passions in meaningful ways and whether it’s starting a unified team at your school, or just cheering at a competition, that’s what Special Olympics is offering – a way for young people to make meaningful change in the world.”

Why ‘Mental Retardation’ is Outdated
Although originally a clinical term and introduced with good intentions, the term "mental retardation" and its pejorative form, "retard" have been used widely in today's society to degrade and insult people with intellectual disabilities. By instead using "intellectual disability" and "an individual with an intellectual disability" in federal laws, the United States sends a strong message that language is important and that no form of the 'R-word' should be used to refer to any of its citizens.

Champions of Rosa’s law made sure that by updating language in federal law that the bill would not expand nor diminish services, rights, responsibilities or educational opportunities duly owed to individuals with intellectual disabilities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization, and the White House through the President's Committee for People with Intellectual Disabilities. The changes will occur during routine revisions to laws and documents over the next several years. Since the alterations will be implemented gradually, the legislation is not expected to incur any cost.

How ‘Rosa’s Law’ Began
A family in Edgewater, Maryland provided the inspiration for the law. Nina Marcellino is the mother of four children, including Rosa, a child with Down syndrome. In 2009, Marcellino learned that Rosa had been labeled retarded at school. Marcellino didn't allow the R-word in her house, and none of her children described their sister that way. Nina teamed up with other parents and her state delegate to introduce a bill to change the terminology in Maryland state law. Before the bill was brought up for consideration in the Maryland General Assembly, they held a hearing on the implications of changing the term.

There were several witnesses at that hearing, but the testimony that had the greatest impact was given by an 11-year-old boy: Rosa's brother, Nick. "What you call people is how you treat them," Nick said. "What you call my sister is how you will treat her. If you believe she's 'retarded,' it invites taunting, stigma. It invites bullying and it also invites the slammed doors of being treated with respect and dignity."
Nick's comments speak to the core values of Special Olympics – respect, dignity, acceptance and inclusion. Special Olympics congratulates and thanks all involved in passing ‘Rosa’s Law.'

Special Olympics Delegation to White House Commemoration of ‘Rosa’s Law’

• Dr. Timothy Shriver, Special Olympics Chairman and CEO
• Loretta Claiborne, Self-Advocate and Special Olympics International Board Director
• Eddie Barbanell, Self-Advocate, Actor and Special Olympics International Board Director
• Soeren Palumbo, Co-founder “Spread the Word to End the Word” Campaign, Co-founder SO College
• Tim Shriver, Co-founder “Spread the Word to End the Word” Campaign, Co-founder SO College
• Erica Wheeler, Self-Advocate and Special Olympics Maryland Board Director and Athlete
• Danielle Liebl, Self-Advocate and Special Olympics Minnesota Athlete, Youth Activation Committee Member
• Roberta Blomster, Self-Advocate and Special Olympics Minnesota Athlete and Global Messenger
• Frank Stephens, Self-Advocate and Special Olympics Virginia Athlete
• David Egan, Self-Advocate, Special Olympics Virginia Board Director and Athlete
• Julie Petty, Self-Advocate from Fayetteville, Arkansas.

(The above information is from Special Olympics)
###

Timothy Shriver’s thoughts on Rosa’s Law :

Friday, October 8, 2010
President Obama Signs Rosa's Law!

Today, I attended a reception at the White House with Special Olympics athletes to celebrate the enactment of Rosa’s Law. The bill’s passage is a huge victory for everyone, not just people with intellectual disabilities, as it acknowledges the power of words to separate, alienate, and ultimately dehumanize people when they are categorized as ‘other.’ While we still have so far to go in eliminating the use of the r-word in society and in showing others the extent to which demeaning language can hurt, we celebrate this tremendous milestone.

While some might scoff at this change as mere political correctness, I wish you could have been at the reception with these Special Olympics athletes and have heard their many stories of pain and isolation that resulted from the use of demeaning language. Although you couldn’t be there today to hear it from the athletes themselves, so many others have articulated the hurt and isolation they have experienced, including Special Olympics Global Messenger Frank Stephens:

"So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind."

Today is one victory in an ongoing battle and we ask you to join us March 2, 2011 to Spread the Word to End the Word.
# # #
Saturday, September 25, 2010
Rosa's Law is a Good First Step

Over the past two years, youth activists within the Spread the Word to End the Word campaign have secured nearly 140,000 online pledges from schools and communities across the country, setting off a national conversation about humiliating speech and the language of discrimination. It is not hard to see the fingerprints of thousands of youth activists, so athletes, and the families and communities on the passage of Rosa's Law this week, which is now on its way to the President for his signature.

I know I join millions of Americans in hoping for a quick signature by the President, and I also join them in recognizing that changing statutory language is not the end. The debate over language is only an opening to a discussion about attitude change and authentic inclusion. Our part at Special Olympics is promoting unity on the playing field and in communities through sport. We're committed to engaging millions more in the U.S. and around the world.

Critics who say that changing words can not solve problems are right. But it's a good start.

Congratulations to Senators Barbara Mikulski and Michael Enzi, and all the 72 co-sponsors across party lines, on this important accomplishment. Rosa's law is an historic triumph of self-advocacy and youth advocacy on behalf of our country's most vulnerable. This may be a first, but it won't be the last!
###

U S Senator Barbara Mikulski’s Press Release:

Mikulski Applauds Committee Passage of Rosa's Law
Bill strikes “mental retardation” and “mentally retarded” from federal education, health & labor law advances in Senate

May 26, 2010
WASHINGTON, D.C. – U.S. Senator Barbara A. Mikulski (D- Md.) applauded the Health, Education, Labor and Pensions (HELP) Committee’s passage today of Rosa’s Law, a bill introduced by Senator Mikulski to eliminate the terms “mental retardation” and “mentally retarded” from federal education, health and labor laws. HELP Chairman Tom Harkin (D-Iowa) and Ranking Member Michael B. Enzi (R-Wyo.) are original cosponsors of the bill.

Introduced by Senator Mikulski in November of 2009, Rosa’s Law replicates a law recently adopted in the state of Maryland. The family of Rosa Marcellino, a nine year-old girl diagnosed with Down syndrome, worked with their state representative to pass the legislation in the Maryland General Assembly. Shortly before it passed the Assembly, Senator Mikulski met Rosa’s mother Nina Marcellino at a roundtable on special education. Senator Mikulski promised that if Rosa’s Law passed in Maryland, she’d take it to the Senate floor.

“This bill is driven by a passion for social justice and a compassion for the human condition,” Senator Mikulski said. “At its core, it comes down to what Rosa’s brother Nick said in testimony before the Maryland General Assembly, ‘What you call people is how you treat them.’”

Under Rosa’s Law, the terms “mental retardation” and “mentally retarded” would be replaced with “intellectual disability” and “individual with an intellectual disability” in federal education, health and labor law.
“I'm thrilled that this bill has garnered so much support and is moving smoothly through the legislative process,” said Nina Marcellino, Rosa’s mother and advocate. “Thanks to the hard work of Senators Mikulski, Harkin and Enzi we are moving closer to getting rid of the stigmatizing label that carries so many hurtful memories of a period in our history when people with intellectual disabilities were disrespected. This has always been about so much more than just changing words or political correctness. It's about marking a new era where the dignity of people with intellectual disabilities is respected and their value appreciated. I'm eternally grateful to Senator Mikulski for keeping her promise and steadfastly supporting people with disabilities.”

The bill does not expand nor diminish services, rights, responsibilities or educational opportunities duly owed to individuals with intellectual disabilities. It simply makes the federal law language consistent with that used by the Centers for Disease Control, the World Health Organization, and the White House through the President’s Committee for People with Intellectual Disabilities.
“The Marcellinos’ story is a perfect example of effective citizen advocacy. They pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity,” Senator Mikulski said.

The legislation has 43 cosponsors from both parties, including 17 members of the HELP Committee. In the next step of the legislative process, the bill will be considered by the full Senate.
The full text of Senator Mikulski’s statement, as prepared for delivery at today’s HELP Committee mark-up, follows:
“I’m glad that we have the opportunity today to consider Rosa’s Law. This bill takes ‘mentally retarded’ out of the federal law books and replaces it with ‘intellectual disability,’ a change that will have a positive effect on more than 6 million Americans.

“I want to thank Chairman Harkin and Ranking Member Enzi, both original cosponsors of Rosa’s Law, for helping me champion this bill. Their support, and the support of many members of this committee from both sides of the aisle, shows that this is an issue where we can tip our hats to boys and girls with intellectual disabilities by checking our party hats at the door.

“Let me tell you about the family that was the inspiration for this bill. Last year, a mother of four named Nina Marcellino found out her youngest daughter, Rosa, a child with Down syndrome, had been labeled retarded at school. Nina didn’t allow the R-word in her house, and none of her children described their sister that way.

“The Marcellinos worked with their state representative to craft a bill that took ‘retarded’ out of the state law books. Before they brought the bill up for consideration in Annapolis, they held a hearing on the implications of changing the term. One of the witnesses was Rosa’s brother, Nick. He told the legislature, “what you call people is how you treat them.”

“Last year, I had the opportunity to meet Rosa’s mom, Nina, at a roundtable I hosted in Maryland to talk about special education. She told me about Rosa’s Law and how they planned to bring it for consideration before the Maryland General Assembly.

“I thought it was a terrific idea. I promised Nina if it passed the Assembly, I’d take it to the Senate floor. Two weeks later, Rosa’s Law swept through the General Assembly with unanimous approval and was signed by Governor O’Malley last April.

“My bill is simple and straightforward. It substitutes ‘intellectual disability’ for ‘mental retardation’ and ‘individual with an intellectual disability’ for ‘mentally retarded.’ This bill will not diminish services, rights, or educational opportunities.

“The change would make federal health, education, and labor law consistent with language used by the CDC, the World Health Organization, and the White House, which changed the name of its Committee on Mental Retardation through Executive Order to the Committee for People with Intellectual Disabilities. It also follows the actions taken by many states to eliminate the r-word, including Virginia, Alaska, Massachusetts, New Hampshire, Tennessee, and Wyoming. It is a change advocated by the American Psychiatric Association, the group of physicians who wrote the definition for mental retardation.

“When I introduced the bill in November, I invited the Marcellinos to come down to Washington to see their bill get introduced and watch my floor speech. Before I went to the floor we had a chance to visit and I got to speak with the whole family – the parents, and their four kids, including Rosa. They told me about the steps they took in Maryland to get the state law passed. One of their ways to rally support was by giving people buttons that say ‘I support Rosa’s Law!’ It has Rosa’s face on it – she’s eight years old.

“They gave me one of those buttons and I look at it every day before I go to work. It reminds me of why I came to the Senate – to be a voice for Marylanders and to bring the best ideas of the people to Washington.

“This bill is driven by a passion for social justice and a compassion for the human condition. At its core, it comes down to what Nick said – that what you call people is how you treat them. The Marcellinos story is a perfect example of effective citizen advocacy. They pulled together to pull us all to another way of thinking. They fought for the respect and dignity of a loved one. The more than 6 million people with intellectual disabilities in America deserve that same respect and dignity.

“That’s why I introduced Rosa’s Law. I thank the chair and ranking member for their consideration of this bill and urge other members to vote to report this bill for consideration on the Senate Calendar.”
_____
# originally posted June 2011 

The Barriers Latino Families Face On Path To Autism Diagnosis

Serious obstacles impede Latino families’ quest for autism diagnosis and treatment in the United States. Challenges include a lack of information about autism and a concern that consulting experts might bring them legal trouble1.

Article by HANNAH FURFARO, published by SPECTRUM | June 22, 2017

The findings may help explain why Latino children with autism are diagnosed later on average than non-Latino white children in the U.S.2,3.

“It’s pretty obvious now from national data that’s been collected for about 10 years that these disparities exist. It’s not a fluke, and they’re not going away,” says lead researcher Katharine Zuckerman, associate professor of general pediatrics at Oregon Health & Science University in Portland.

Zuckerman and her colleagues surveyed 352 parents of children with autism — 46 percent white and 54 percent Latino — in Portland, Denver and Los Angeles about their experiences getting an autism diagnosis for their child. All of the families had visited clinics in the Autism Treatment Network, an association of clinical sites supported by the nonprofit advocacy group Autism Speaks.

The survey revealed 19 barriers to care, 4 of which are specific to Latino families. The most common — reported by three-quarters of parents in the study — was the stress of the diagnostic process. Others include a lack of knowledge about autism and trouble navigating the medical system. On average, individual parents said they had run up against half of the barriers identified.

The next step is to find ways for families to overcome these barriers, says Sandra Magaña, professor of disability and human development at University of Illinois at Chicago, who was not involved in the study. “The field needs to really recognize there are a number of underserved communities, Latinos being one of them,” she says. “We can’t just ignore these populations.”
Immigrant issues:

Several hurdles are more prevalent among Latino parents than white ones, particularly among Latinos who speak little or no English. These parents had almost four times the odds of reporting a limited knowledge about autism as white parents.

About 16 percent of these parents said they were afraid to seek medical help because of legal issues — which could include fear of revealing their immigration status, Zuckerman says. The legal concerns are a more common concern than lack of access to an interpreter, which clinicians have long assumed to be a major barrier to care. The results appeared in the May issue of Pediatrics.

The study illustrates the importance of directly asking parents about the troubles they face, instead of simply ignoring or making assumptions about them, Zuckerman says.

“There’s a long legacy of research with minority communities that has been unfair to them,” Zuckerman says. “We really have a responsibility to do research that communities support and will also truly benefit from.”

Breaking down these barriers could help lower the average age of diagnosis, says Zuckerman. “The more we wait around, it’s just more kids who are not being identified until they’re really old, or not being identified at all,” she says.

A few research groups have made headway on this front. For example, Bruno Anthony and his colleagues at Georgetown University in Washington, D.C., have found that asking Latino parents screening questions orally instead of in writing helps flag more children for autism.

The next step, Anthony says, is to test treatments for autism that account for cultural differences.

REFERENCES:
Zuckerman K.E. et al. Pediatrics 139, e20163010 (2017) PubMed
Valicenti-McDermott M. et al. J. Pediatr. 161, 554-556 (2012) PubMed
Magaña S. et al. Intellect. Dev. Disabil. 51, 141-153 (2013) PubMed

https://spectrumnews.org/news/latino-families-face-barriers-path-autism-diagnosis/

Autistic Teen Who Died On School Bus, Family Receives $23.5M Settlement

WHITTIER, Calif. (AP) — The family of an autistic teenager who died after being left alone on a Whitter school bus on a sweltering day is receiving $23.5 million from the bus company, the family's attorneys announced Monday.

Pupil Transportation Cooperative is settling a wrongful-death lawsuit over the Sept. 11, 2015, death of Hun Joon "Paul" Lee.

A message left for an attorney representing the company wasn't immediately returned.

The bus carried Lee, 19, and two other special needs students to Sierra Vista Adult School in the eastern Los Angeles suburb.

Two students got off, but Lee was left inside the closed and sweltering bus for seven hours as outside temperatures neared 100 degrees, investigators said.

The lawsuit contended that the driver, Armando Ramirez, was distracted by sexually explicit text messages from a co-worker.

"Mr. Ramirez then returned the bus to the yard, oblivious to the fact that the nearly six-foot and over 300 pound young man was still aboard, and quickly exited to meet his lover for a sexual tryst without first performing his required child check and post-trip sweep of the bus," said a statement from the family's lawyers.

His mother called the school district when the teen didn't return home, and his body was found inside the bus.

Ramirez, 37, pleaded guilty to dependent adult abuse resulting in death and was sentenced to two years in prison.

Lee's death prompted passage last year of a state law requiring a child-safety alarm system on buses that the driver must deactivate before leaving the bus.

"We are proud that Mr. and Mrs. Lee have taken steps to make sure the tragedy that has befallen them will not strike another family," their attorney, Rahul Ravipudi, said in the statement.

Associated Press | June 12, 2017

BOY WITH AUTISM WHO ASKED V.P. PENCE FOR APOLOGY, MOCKED BY FOX NEWS HOST

"It is a bit, the 8-year-old pretty much stalked the vice president afterwards. He wasn't even—the headlines said he was 'hit, he was struck, he was smashed, he was bumped,'" Bruce said. "The fabric on his sleeve touched his nose maybe. He stalks the vice president, says, 'you owe me an apology'...This is crazy. Now look, he's seen it either on television, maybe he's seen it at home perhaps, but he felt aggrieved."

 CNN article by TIM MARCIN | May 16, 2017                                                                                       

Hemmer added that he thought someone probably taught him how to demand an apology. But the boy's mother, Dr. Ingrid Herrera-Yee, appeared on CNN's The Lead hosted by Jake Tapper to refute the Fox News characterization of the moment that went viral because it was cute.

"Michael is 10 years old, he is on the autism spectrum, he's a military child and he loves the White House, he called it the people's house," Herrera-Yee said to Tapper. "For those who don't have a child with autism, they need to really rehearse and a lot of their therapy involves practicing social interactions."

Herrera-Yee, who noted the vice president was wonderful in how he handled the situation, said Michael was being a "champ" and doing what he thought was the right thing. "It's not meant in any sort of negative way, it's him learning the social interaction with someone else," she said on CNN.

Herrera-Yee said she was alerted about the Fox segment by her mother, who had seen a teaser for the segment. "I was excited, I sat down with my coffee and started watching. Then suddenly it just went south," she said. "I was devastated when I saw what they were saying. People who—they didn't even know his age. They didn't know who he was, but really taking out of context a really innocent interchange between the vice president and my son."

She added that it hurt her 15-year-old son, as well. He saw the blow-back online and answered some of the negative comments but got attacked for it.

"How can we fix this, what do you want to be done?" Tapper asked.

"First, I want people to be more aware of autism," Herrera-Yee answered. "Second, just like Michael asked the vice president sweetly for an apology, I want to ask on his behalf for Fox News to apologize for having used my son out of context and using those really horrible words to describe him and our family."

Bruce apologized for her comments calling the 10-year-old a snowflake Tuesday morning on Fox's America's Newsroom. "I am so sorry to the family," Bruce said. "My intention was never to hurt a kid or his mom, we had absolutely no idea that Michael was on the autism spectrum... A main lesson here, no matter intent, is to leave kids out of our political discussions."

http://www.newsweek.com/fox-news-hosts-mocked-boy-autism-mother-demands-apology-610051

Illinois State Board of Education Rules School District Failed High School Student with Autism

CHICAGO – An Illinois State Board of Education ruled last month that a school district’s obligation to provide educational services to a student with a disability goes far beyond a student completing required courses to graduate. The hearing officer found that the school district improperly graduated a young man with autism and failed to provide him with necessary education services to prepare him for employment, further education and independent living in violation of federal and state law.

Paris Washington, a twenty-year old young man with autism from Chicago Heights, was graduated from Bloom Township High School District 206 in May 2014 without receiving the legally-required individualized education services to prepare him for his transition to life post-high school. Each year, the school district passed him along further in high school without the required support and services. He and his mother, Cheryl Washington, only learned after he graduated that the school district had an obligation to provide these educational services. As a result, they filed a lawsuit with the Illinois State Board of Education (“ISBE”) seeking the required services to further his academic, career, and independent living pursuits.

The original hearing officer appointed by ISBE dismissed the case in January 2016 because she found that the school district’s obligation to the student ceased with graduation. Paris and his mother appealed to the U.S. District Court for the Northern District of Illinois where the court reversed the hearing officer’s decision and remanded the case for a hearing to determine if Paris was improperly graduated and denied a free appropriate public education.

A second ISBE hearing officer found that District 206 did not meet its obligations to Paris. Ruling that Paris was improperly graduated and denied an appropriate education, the hearing officer awarded him two additional years of instruction to develop employment, independent living and academic skills.

According to Olga Pribyl, Vice President of Equip for Equality’s Special Education Clinic, which represents Paris and his mother, the decision confirms that school districts must provide educational services to prepare a student to make the transition to adult life after high school and, for many students with disabilities, achieving the credits for graduation is not sufficient preparation. Importantly, parents who learn about educational violations that occurred while their children were in high school may still bring complaints regarding those violations even after graduation.

“This life-changing decision for Paris firmly instructs school districts that transition services are necessary for students with disabilities and cannot be overlooked,” said Pribyl. “We are pleased that the Hearing Officer has confirmed the central importance of individualized education services for students with disabilities.”

“No one from the school ever told me about transition services and I had no idea what they were when Paris was at Bloom High School,” said Cheryl Washington, Paris’s mother. “The school always told me that the goal was for Paris to graduate and go to college, but we never discussed what they would do to help him reach that goal. We are thrilled that Paris will finally get the transition services that he needs and deserves.”

“We hope this decision can be used to help parents across Illinois understand their school districts’ obligations to prepare students for further education, employment and independent living,” said Olga Pribyl. Equip for Equality attorneys Margie Wakelin and Melanie Grant are also representing Paris and his mother.
For more information on the Ruling, visit Equip for Equality >>

source: press release May 11, 2017

Young Girl with Autism Slapped by Bus Aide

New Lenox, Illinois – A school aide on a bus was caught on camera slapping a girl with autism, and now the child’s parents are speaking out.

report by Brad Edwards for CBS2 News Chicago | May 5, 2017                                                                                
In the surveillance video, 6-year-old Kayle was acting agitated when, it appears, she was struck by the aide.

A school official notified parents Nick Rushing and Madeline Norley about the incident.

“To see someone put their hands on my autistic daughter who can’t defend herself — it was heartbreaking,” Rushing tells CBS 2.

The bus aide is employed through Lincoln Way Special Education District 843 in Frankfort.

A statement from the executive director student safety is the top priority.

The parents say they’re talking about the incident in hopes that it starts a conversation and promotes better training. They say Kayle needed space, not a slap.

The family says they may take legal action.

Police are still analyzing the video and conducting interviews. No charges have been filed.

http://chicago.cbslocal.com/2017/05/05/video-shows-school-aide-striking-girl-with-autism/

Chicago Families with Autistic Kids, A Chance To Dine Out Without Stress or Stares

The scene at Fireside restaurant in Ravenswood is pleasant and peaceful, with children playing, conversation humming and the smell of bacon rising from the buffet table. But make no mistake, this is no ordinary weekend brunch. A 12-year-old boy communicates his desire for more bacon with grunts. A 5-year-old tries to eat a green crayon and squeals indignantly when he is thwarted.

Article by Nara Schoenberg for the Chicago Tribune | April 27, 2017                                                 

A tall, well-dressed teenager walks up behind his grandmother while she is talking and very gently presses his nose against the back of her right arm.

He breaths in deeply several times, strokes her arm tenderly, and then wordlessly moves on to her other arm, where he does the same thing again.

"Grandma love," his grandmother says, beaming.

At Chicago's second Autism Eats event, many of the young guests have what is now called autism spectrum disorder; a developmental disability that affects communication, social interaction and behavior. Eating out can be a hassle, with kids flapping their arms, chattering nonsense words, throwing tantrums when they have to wait for their food or just getting up to wander around immediately after eating. People stare; the kids get frustrated; parents and siblings blush.

Autism Eats, created by Boston parents Delphine and Lenard Zohn in 2015, provides a creative solution: Parents rent out private rooms in supportive restaurants and eat buffet-style meals, which cut down on waiting and the attendant frustration.

Autism Eats has since spread to 11 states; Chicago's first event was in March.

"It's relaxed. You can sit anywhere. No one judges," said Chicago participant Vania Marrero, who enjoyed the most recent event with her daughter Makayla, 4, who has mild autism and a fascination with dinosaurs, her son Jaylen Rivera, 12, who is autistic and nonverbal, and her son Edgar Rivera, 17, who does not have autism.

"We're in a comfortable place here. I tell my husband, 'I feel like we're all one family,'" Marrero said.

More than 70 people attended the first Chicago event; the second was smaller by design with about 30 people. Chicago organizer Shannon Dunworth hopes that 120 people will show up for the third event in June.

Dunworth's husband, David, learned about Autism Eats on social media. He told Shannon, and they were immediately drawn to the concept. David's 14-year-old son, Aidan, who is autistic and nonverbal, doesn't like waiting when he goes out to eat, and sometimes, in order to relax, he makes loud chattering sounds.

That isn't such a big issue now: "You get to the point when you have an older kid with autism, where you don't really care what people think anymore," Shannon says. David takes Aidan everywhere, and if there's an issue, he handles it. But Shannon thought Autism Eats would be a great help to newer parents, who are often still adjusting to public reactions.

At Fireside, a smiling mother quickly becomes emotional when the conversation turns to "all the explaining." When your kid doesn't respond to a new friend who wants to play in the sandbox, or withdraws from another young child's embrace, or doesn't accept the "gift" of a dandelion, you have to explain, parents say. When your kid makes unusual sounds or gestures, you explain. When your kid is scared of the slide, you explain.

At the end of the day, you're wiped out by all the explaining, the mother says, her eyes filling with tears: "It gets exhausting."

While parents bond, children and teens roam the wooden walkways at the perimeter of the room, an enclosed patio with high ceilings and red brick walls.

There is some grunting and squealing, but no one is really loud, and no one runs particularly fast. The overall impression is not of chaos, but of movement. These kids like to move.

Jaylen Rivera walks at a moderate pace, an iPad in hand, occasionally making a sound such as "Ahh!" or "Mmm!" or smiling at a family member. When he wants more food, he goes over to the buffet and points: "Eh!" His older brother Edgar helps him with the mac and cheese. "Eh!" Jaylen says, and Edgar gets him bacon as well.

"Me and Jaylen, we share a bedroom so we're together 24/7," Edgar says, smiling. At this point, he says, he understands his brother's communication pretty effortlessly.

Jalen Allen, 14, of Maywood, sits quietly as his mother, Candace Bell, chats with me. Then, quite suddenly, his face lights up behind his heavy glasses. "You gonna put me on the front page?" Not on the front page, maybe, but certainly in the newspaper, I tell him. Jalen introduces himself: He's an artist, an actor, an entrepreneur and a skydiver.

He and his mom chuckle when I ask, "Really, a skydiver?" It turns out he has been to one of those indoor skydiving centers that offer simulated experiences. Articulate and quick-witted, Jalen launches into a series of questions, some patterned on the questions I asked his mom ("How old are you?"), others more creative: "If you had a million dollars — no, a billion dollars — what would you do with it?"

His mom says they're still adjusting to a recent diagnosis of Asperger's syndrome, a milder form of autism associated with intense interests and social challenges.

Some of the most active participants at the event are the Dunworths: Aidan isn't much of a brunch person and isn't attending, but Shannon acts as hostess and David dresses up in a Batman costume — a big hit with the younger kids, who stop, stare and hesitate, then generally respond to David's request for a high-five.

Aidan's 11-year-old brother, Shane, who does not have autism, is here too: helping out, chatting and just observing the spectacle.

"It's a really good experience seeing so many families like mine interacting in a restaurant without being scared and being told to quiet down," he says as the event is winding down.

"I thought it would be a great time, and it was."

http://www.chicagotribune.com/lifestyles/sc-autism-eats-family-0427-20170427-story.html

For Chicago Autism Eats, visit: http://www.facebook.com/autismeatschicago/

For Autism Eats Organization, visit: http://www.autismeats.org/