Being Black delayed my son’s autism diagnosis Children with autism display a variety of behaviors in ways that can often reaffirm biases that exist with Black children — boys in particular. (Detroit Free Press)
New money to help students with disabilities transition into adulthood, autism family drama premieres starring Robert De Niro, physicians are needed to treat people with I/DD, and more news for the week ending Sept. 23, 2023.
NJ: Thousands of NJ families frustrated by long wait for disability services A look at the physical, emotional and financial toll it takes to be in limbo. (njspotlightnews.org)
NJ: Nonprofit partners with Montclair Public Library for autism job training (roi-nj.com)
NC: Mother says discriminatory discipline stands in way of daughter’s education The state suspends and expels students with disabilities more than any other state in the country, per capita. Most of those kids are Black.
Pa: Pittsburgh school districts sue over new ‘age-out’ rule for students with disabilities That was fast. The changes, announced in August, raise the state’s age-out from 21 to 22. (Post Gazette)
Biden Admin. Spends Big Bucks to Improve Outcomes for Students with Disabilities Nearly $199 million will fund model projects in 20 states designed to help young people transition into adulthood. (Disability Scoop)
Demand for direct care workers expected to outpace availability: report The far-ranging report projects that this workforce will see the largest growth of any job sector in the country. (wcnc.com)
Autism Family Drama Premieres at Toronto Film Festival Ezra, directed by Tony Goldwyn, stars Bobby Cannavale and Robert De Niro. (Los Angeles Times)
Oregon Mountain Bike Trails Adapted for Accessibility 100 miles of Bend, Ore.’s mountain bike trails to be assessed for adaptive users in May. (Governing.com)
‘There’s no one way to be autistic’ In this beautiful animation, British author Sara Gibbs shares how being diagnosed as autistic as an adult changed her relationship with herself. (BBC.com)
2 Massachusetts moms made adaptive clothing for kids with disabilities BeFree’s lightweight activewear was inspired by a very active middle-schooler with a disability. (cbsnews.com)
A Colorado dad opened a trade school for young adults with autism. Amazing, and, I’ll note this again: Nearly 99% of working-age autistic adults who potentially need employment services actually receive them. (Colorado Sun)
When Family Members Downplay a Child’s Potential Disability Some parents doubt their own observations of their child’s behavior, in part because some family members tell them to “let it go.” (Psychology Today)
Being Black delayed my son’s autism diagnosis Children with autism display a variety of behaviors in ways that can often reaffirm biases that exist with Black children — boys in particular. (Detroit Free Press)
People with Down syndrome deserve access to Alzheimer’s treatment Clinical trials for new drugs failed to include the population that made progress on Alzheimer’s treatments possible. (Boston Globe)
HHS Invests in Training New Physicians to Care for People with I/DD A 2022 survey of physicians showed only 57% would welcome people with disabilities into their practices. (HHS.gov)
Global report highlights neglected health needs of children with developmental disabilities (World Health Organization)
Passenger Demands ‘Lazy Child’ Give Up Disabled Seat The berated teen finally had to lift her trousers to show her prosthetic leg. Let’s be nicer to each other.
Haiti gangs take aim at disabled children: ‘Put those kids out of their misery or we will’ (Miami Herald)
This Rapping Preacher Is Selling Bleach to Parents Trying to ‘Treat’ Autism in Kids (Vice)
The bipartisan Savings Penalty Elimination Act, originally introduced in both chambers of Congress in the 2021-22 session, is back.
The bill, which gives the Supplemental Security Income (SSI) program a critical update, was reintroduced in the Senate on Sept. 12 by Sherrod Brown (D-OH) and Bill Cassidy (R-LA). The measure is expected to be sponsored in the House again as well.
People who get SSI cannot have more than $2,000 in financial resources and married couples only $3,000, punishing people for saving for emergencies and their futures. The bill would raise those caps to $10,000 for individuals and $20,000 for married couples, and index them to inflation moving forward.
In related news: SS and SSI monthly benefits are likely to grow by 3.2% in 2024, reports Disability Scoop.
On Sept. 12, Emily Demko from Athens County, Ohio, was invited to D.C. to speak on the importance of the SSI Savings Penalty Elimination Act. The Arc has a wonderful video from the event, below.
Image: Rawpixel via Freepik
The world’s biggest retailer sued for disability discrimination, New York Fashion Week has an adaptive clothing runway, electric shock therapy not going away and more news for the week ending Sept. 16, 2023.
Suit: Walmart unlawfully terminates employees with disabilities nationwide The Equal Employment Opportunity Commission charges the giant retailer with firing employees who perform satisfactorily but fail a seemingly unnecessary computer-based test.
Hochul Signs Bill Outlawing Use of ‘Mentally Retarded’ Language in State Laws Yes, it took this long to get the offensive term changed to “developmental disabilities.”
Runway of Dreams Returns to New York Fashion Week with Clothes for People with Disabilities: Take that, Michael Kors.
Massachusetts’ top court allows electric shock therapy for disabled patients FYI, a bill prohibiting New York from sending children to the institution that uses the highly controversial method, the Judge Rotenberg Educational Center, languished in the 2023 legislative session.
Social Security Overpays Billions to People, Many on Disability, then Demands Money Back SS overpayments are hurting the most vulnerable, especially those who receive SSI.
The missing billion: Lack of disability data impedes healthcare equity Important research from the McKinsey Health Institute has just been published.
How to teach kids to befriend a child with a disability You may not agree with all of the suggestions here, but who couldn’t use some good ideas?
Each year, beginning on the Sunday after Labor Day, we honor Direct Support Professional Recognition Week. This year it falls on Sept. 10 – 16.
It should always be the time to recognize our DSPs. This critical, caring and committed workforce needs all of our support. Underpaid and often undervalued (especially by the government agencies that fund them), they desperately need a living wage and decent hours.
Related news: SUNY Chancellor King Announces Registration is Open for Direct Support Microcredentials
This past New York State Legislative Session saw an important bill go nowhere. The Direct Support Wage Enhancement bill would raise wages an extra $4,000 per year in income for Direct Support Professionals. It was proposed on the heels of the legislature landing on a mere 4% cost of living increase.
Let’s get these workers the money they deserve.
Homesteads for Hope in upstate New York, has an excellent two-part podcast on the DSP crisis. They speak directly to people who specifically have worked in group homes, and their stories are eye-opening, appalling, and need to be heard.
The teacher shortage, especially in special education, is at crisis levels. This week, Maine was in the news with new initiatives from the University of Southern Maine (USM) that hope to help alleviate a problem so bad that a call to arms (headline: If you ever thought about teaching, Maine needs you. Now.), was just published in the Bangor Daily News.
The multi-layered program features a new bachelor of science special education degree (the school hasn’t had one for some 30 years) — a 39-credit major leading to certification to teach students with mild to moderate disabilities — and a new apprenticeship program.
“We’ve got to do something about the shortage,” Rachel Brown-Chidsey, associate professor of Special Education at USM, tells The Boost. “Right now it’s all about increasing capacity to provide special education services. We’re really being very aggressive in trying to address the teacher shortages.”
The bachelor’s degree is geared toward those already working in schools, especially people working as special ed education technicians (or “ed tech” ), better known as “paraprofessionals” in much of the rest of the country. School districts, that want to encourage people already interested in teaching, are giving their ed techs “release time” from their jobs to do their student teaching requirements.
To make the degree as accessible as possible, classes are being taught online, and students can do their student-teaching internship while working in their current ed tech jobs.
“We need to be innovative and things like online instruction mean people don’t have to drive an hour to get to campus,” says Brown-Chidsey.
USM, in collaboration with Southern Maine Community College (SMCC), also offers an apprenticeship program, which Brown-Chidsey says “is the thing that’s most new about our program. It takes the idea of apprenticeship, which has been around for years, and brings it into education.”
How it works is SMCC students will work as apprentices in public schools, earning half of their credits in the classroom. Those credits will automatically enroll them, upon graduation, into the SMU bachelor’s degree in special ed.
The apprenticeship program is part of a recently announced initiative co-sponsored by the U.S. Education and Labor departments, and the Maine Education and Labor departments.
Because community college tuition currently is free in Maine, these students “are saving money while working towards their bachelor’s degree,” explains Brown-Chidsey.
“Teacher education in Maine has followed one specific model for a long time,” she adds, “and part of all this is rethinking the components and making them more accessible so people don’t have to quit their day job to go to school to be a teacher.”
Photo: Adam Winger via Unsplash
As the debate over cameras in classrooms (and group homes) rages on, the Frederick County, Maryland, school board this week shot down a proposal — after three years of debate — to put cameras in some special ed classrooms.
The proposal came from parents upset about alleged physical abuse in a class for children with severe communication challenges. But the board reportedly was swayed by a survey taken by special ed teachers that showed staunch opposition to the cameras. Reasons included fears of teachers being spied on, the video being used for performance evaluations, and the anxiety-provoking implication that they aren’t to be trusted.
A small percentage, however, did feel it would help keep staff safer, not just students.
RELATED NEWS: Videotaped Abuse in Long Island Group Home Raises Question of Need for Cameras
In Maryland, state legislation requiring cameras in some special ed classrooms was introduced multiple times but never passed.
In New York, a bill introduced in the 2019-2020 legislative session requiring video camera recording in special ed classrooms where pupils are unable to communicate effectively pretty much just sat in committee. (The legislators who sponsored it are no longer in office).
In June, Gov. Hochul approved $13M for school tech and security upgrades. It includes video systems but it’s unclear if it could go to cameras in classrooms.
Bringing Legislation on cameras in classrooms into focus, a white paper from several Council of Parent Attorneys and Advocates (COPAA) members, has a lot of good information.
Photo: Wirestock on Freepik
New York City is failing its special ed students, a new eye-tracking device can help identify autism, social media content creators with disabilities are having a moment and more news for the week ending Sept. 9, 2023.
NYC Comptroller Report Finds DOE Fails to Deliver Mandated Special Ed Services Even As Claims Spending Surged Tenfold During the 2021-22 school year, nearly 14,000 recommendations for support services for K-12 students were not fulfilled, and nearly 10,000 preschool students with disabilities missed out on their required services entirely. (comptroller.nyc.gov)
NYC school buses delayed on 1st day of school amid threat of driver strike A strike could affect many students with disabilities as they typically have to travel further to go to school. (Gothamist)
Missouri advocates upset about proposed change to self-directed supports programs It would freeze already low payment rates for caretakers. (Missouri Independent)
California disability services for families vary by race, ethnicity I posted a story on this last week, but this points out that Latino clients make up the largest share of the state’s 21 regional centers overseeing support for children and adults with I/DD, yet receive significantly less funding. (Sacramento Bee)
England’s special educational needs crisis ‘out of control’ amid record complaints The state of education isn’t any better in Great Britain. (The Guardian)
Autism may be identified early with eye-tracking device, studies show A tablet-based device can identify the disorder in children ages 16-30 months “as accurately as a specialist would.” (nbcnews.com)
Beyond Faces: Broader Memory Challenges for Some Autistic Children Memory challenges impact not only a child’s recall of faces but also affect their ability to remember various types of information, suggests this Stanford study. (scitechdaily.com)
Australia is working on a national autism strategy It’s aimed at improving community attitudes, health, education and employment. (SBS News)
With U.S. legislators gearing up to vote on the budget appropriations bills, the Autism Society’s Capital Connections asks that people continue to educate Members of Congress about the importance of adequately funding programs that support individuals with autism.
Biden Administration Proposes Rule To Curb Disability Discrimination In Health Care (Disability Scoop)
Dept. of Labor announces agreement to continue support for disabled youth employment initiatives
Intellectual disability found to be more common in families with substance use disorder (medicalxpress.com)
Social media content creators with disabilities are having a moment As the number of disability-inclusive TV and movie titles continues to decline, brands have turned to disabled content creators to fill the void — and it seems to be working. (Yahoo Finance)
Mom pens heartfelt letter on disability awareness to parents as her blind son starts middle school I love this note a mom wrote to educate parents about how to help their kids accept and include differently-abled peers. (scoop.upworthy.com)
Police interactions with people with intellectual and developmental disabilities (I/DD) sometimes end badly. Officer responses can quickly go off the rails, as an article this week on the handcuffing of a 10-year-old nonverbal boy with autism in North Carolina makes all too clear.
This week I listened to a terrific podcast from Police 1 about how to improve law enforcement response. I wanted to share what was discussed and add my own follow-up with the podcast’s featured guest, Leigh Anne McKingsley, director of The Arc’s National Center on Criminal Justice and Disability.
“For this population, de-escalation is the name of the game,” McKingsley tells Policing Matters host, Jim Dudley, a 32-year veteran of the San Francisco Police Department. Our approach is “let’s get in front of the crisis before it happens.”
RELATED NEWS: States Consider Ways to Keep Autistic Drivers Safer During Traffic Stops
For its part, The Arc offers Pathways to Justice, a comprehensive, community-based program that works with law enforcement, victim service providers, the legal system and communities to establish disability response teams, and also helps to train those teams. (Interested communities should reach out to The Arc and to local Arc chapters.)
“We hear mental health talked about, but there never seems to be space to talk about I/DD specifically. The point of the Pathways training is to address this,” McKingsley tells The Boost.
Her suggestions for police include:
Additionally, the Bureau of Justice Assistance (BIA) offers police departments that want to train their officers on mental health, I/DD and crisis response a free curriculum called CRIT, (you’ll find the tool kit here), similar to CIT but incorporating more specific I/DD throughout the training. The program was created through The Academic Training to Inform Police Responses project, which has five partners including The Arc.
Also in the podcast, Dudley brings up the idea of training families and other caregivers for when law enforcement shows up at the door for reasons ranging from the individual in question potentially being victimized to a behavior that has occurred. For one, he said, it’s more challenging for police to deal with a person with I/DD who’s locked in a bedroom — “We don’t know what we’ll find on the other side of the door” — than if they were sitting, say, in a common area.
McKingsley suggests that a type of home crisis plan be created. “People in the disability field know about having plans, just think of the IEP,” she tells The Boost. “Having a plan in place where people with I/DD know what to do and how they should respond, and creates an early touch point with local police so they already understand the situation” can be a big help.
She also notes that a solution increasingly looked at by law enforcement, disability advocates, and others is voluntary registries. (See The Arc’s Policy Brief on registries here.) She cautions that these registries raise privacy issues and that “a key question is [still] whether the responding officer has the training to interact with that person. … It’s a quick fix that makes people feel better, but there’s no federal data yet on how effective they are.”
It all comes down to listening, talking and education. “Inclusion means we can all exist together and don’t have to fear what we don’t know,” McKingsley says. “We just have to learn about what don’t know.”
Photo: Creative Commons/NPR
Kami, a “virtual influencer” with Down syndrome created in 2022, is back in the news again. That’s thanks to the ad agency behind it, Forsman & Bodenfors Singapore, taking top honors at a recent NY Festivals Advertising Awards show for work that inspired the greatest social impact.
It’s a great excuse to introduce Kami to those of you who didn’t read about the virtual influencer when it was created. It came about when Down Syndrome International (DSI) teamed up with the ad agency and global digital modeling agency The Diigitals to design a more inclusive avatar.
When avatars are designed, physical and other disabilities and other “perceived flaws [are] often removed” Julie Seal, Head of Accessibility Council, Meta, said in a YouTube video about Kami’s creation (see below).
Kami was created by combining the faces of 100 real young women with Down syndrome from 16 countries. That 2D image was used to create a 3D representation, and that image was sculpted into a 360 3D model.
You can check out Kami’s (rather spare) account on Instagram, @itskamisworld.
What are virtual influencers? These characters were touted as the Next Big Thing in influencer marketing, Digiday reports, but, in bad news for Kami, now that “the generative artificial intelligence boom has the advertising industry enamored,” virtual influencers seem to have fallen out of favor.
I met Garrett Brumfield, 33, a disability advocate and direct support professional in Roanoke, Va., while curating a list of disability sources for an organization called the Economic Hardship Reporting Project. I was taken by his story, his sense of humor and his commitment to the disability community.
Brumfield launched Overcome Yours in 2014, a platform that both advocates for and empowers other disabled people to tell their stories. He leads motivational talks nationwide focusing on issues including accessibility, with organizations ranging from the Virginia Board for People with Disabilities, the National Walking Summit’s America Walks, and the Association of Programs for Rural Independent Living (APRIL). He’s also an America Walk’s 2023 Walking College mentor.
Brumfield is also a direct support professional working with the nonprofit Virginia Institute of Autism. His next move: Stand-up comedy.
Nice to talk with you, Garrett! Let’s start with Overcome Yours. When did it launch?
It was in 2014, and I was 24. I was working in radio and TV, and my boss told me he found it inspiring and motivational when I spoke to him about my life. He encouraged me to share my story with others.
I thought, “What did I know about being motivational?” But that put me on my own journey of self-acceptance and embracing my disability.
What was it like growing up with cerebral palsy?
I wanted to be just like everybody else. I played sports, learned to drive with adaptive equipment, and went to and graduated from Radford University in Radford, Va. When I applied to school, I wasn’t sure what kind of supports I needed. I quickly realized my biggest struggle was picking up after myself.
After college, I strived to live independently, and have been living on my own since 2016.
I live with my girlfriend now, but hadn’t done much dating That was always a struggle — figuring it out, how to present myself, how to disclose my disability. Letting people in was the biggest thing. I thought, “They probably don’t want to date someone with a disability.” But once I opened up it turned out to be a learning experience for both of us.
So your day job is being a direct support professional in the Virginia Institute of Autism’s Adult Day Program. What do you do there, exactly?
I work on community engagement for adults with various disabilities. We have a space where people can gather for activities, and then we go out into the community several times a day to do different things.
The work is both rewarding and feeds into my advocacy as it helps me understand different people’s needs and how to support them best in different situations. The most important piece of that work for me is seeing individuals grow in new levels of understanding and independence with my help.
And you’re not slowing down — you want to add standup comedy to your repertoire!
That came out of COVID. I got tired of looking at my computer screen! It started as a way to get back on stage because all the motivational work was virtual and I missed being in front of an audience. And, I like making people laugh.
So I went to an open mic and talked about the best and worst places my scooter ever died. I didn’t plan it, just told the story, and it got so many laughs. By the way, I’m finding that a lot of open mic nights, even those that are paid gigs, are in places that aren’t wheelchair accessible.
And with comedy, I don’t need to be an expert, I just need to make people laugh!