Philly becomes a sensory-inclusive city, a mother and her 23-year-old autistic son explore autism representation on screen, and more news to know for the week ending Dec. 23, 2023.
NYC’s District 75 schools for students with disabilities brace for tens of millions in cuts
The district has some 26,000 students with complex disabilities who would be affected by the cuts. Reportedly, extracurricular programming would be out, plus the cuts would “thin out supply budgets, and exacerbate an already severe paraprofessional shortage, potentially pushing schools even further out of compliance with students’ legally binding special education plans.” (Chalkbeat)
But, after the announcement, came this: NYC teachers union sues Eric Adams to halt school budget cuts. (Chalkbeat)
Stay tuned.
Special Olympics New York calls on Hochul to increase funding ahead of program cuts The CEO of Special Olympics New York reportedly says the organization will otherwise have to cut participation in games by a third and limit recruitment. (wbfo.org)
Disability service providers ask Hochul for more money in new budget The effort named “Invest in Me” includes CP State, a not-for-profit organization with nearly 30 affiliates. (North Country Public Radio)
Philadelphia is country’s first ‘sensory-inclusive city.’ While a handful of other cities have similar designations from the for-profit org IBCCES, this is the first to receive a Sensory Inclusive Certification from the non-profit KultureCity. (The Philadelphia Inquirer)
TN scores a D grade on the 2023 Tennessee Disability Scorecard The annual review is to ensure that Tennesseans with disabilities are prioritized in policy decisions, which, obviously, they are not. Disgraceful. (wate.com)
What’s behind the shortage of workers who support people with disabilities Another big media outlet picks up on this important story. (PBS)
Autism Representation Is Growing on TV. Is It Any Good? A mother and her 23-year-old autistic son explore the current landscape of autism representation on screen. (Teen Vogue)
Lawsuits claiming Tylenol causes autism lack scientific support, judge finds The ruling in Manhattan federal court likely means the end of about 500 lawsuits, unless plaintiffs get it reversed on appeal. (Reuters)
Rolling chair helps toddlers with disabilities move independently This is an awesome chair. (auburnpub.com)
New York City budget cuts affect special ed, people with I/DD find it hard to get top care from doctors and more news to know for the week ending Dec. 16, 2023.
Interested in an Extended School-Year Program?
Here’s helpful advice from Westchester Institute for Human Development’s CSN Community newsletter. If you want to see if your child qualifies for an extended school-year program and related services over the summer, don’t wait until your annual review meeting in the spring to let your teachers and/or district know. Start the process soon. Find more information at NYS Ed Dept. website here.
Eric Adams’ budget cuts hamper NYC’s compliance with special education court order Adams’ budget cuts are brutal and confusing, but even so this is bad: Only nine out of 40 court-ordered reforms have been implemented since the summer. (Chalkbeat)
NY State education officials share budget priorities The Board of Regents, as part of its annual state budget proposal, outlined its priorities for the upcoming fiscal year. Do they include special ed? Not a heck of a lot, it would seem. (Chalkbeat)
Westchester company creates toys for kids with severe disabilities Enabling Devices is a family-run company founded in 1978. (News12 Westchester)
White House to highlight Maine for policies supporting direct care workers Maine has used pandemic relief funds to pay direct care workers bonuses that averaged nearly $3,500. (Press Herald)
Adults With IDD Face Significant Hurdles At The Doctor, Study Finds Previous studies have primarily looked at access to health care or the perspectives of providers, but this is believed to be one of the first to give voice to those with disabilities themselves. (Disability Scoop)
And it sure makes this next bit of news unsurprising.
U.S. medical schools aren’t teaching future doctors about 7.4 million of their patients Thirty of 155 medical schools provide zero curricular content about developmental disabilities and of those that do many offer it as an elective. (Stat News)
New Approach to Hospital Visits for Children with Behavioral and Developmental Disorders A Pittsburgh hospital’s Adaptive Care Team is providing customized care for special needs kids. (Pittsburgh Post-Gazette)
Orlando dad helps people with autism enjoy Orlando Magic games If it seems like these localized efforts to accommodate neurodiversity have been ramping up, it’s because, in good news, they have been. (Orlando Sentinel)
People with disabilities hope self-driving cars deliver independence This interesting pilot program seems targeted to people with physical disabilities. I wonder if it might be adapted to those with I/DD as well. Regardless, the technology, in general, is still pretty shaky. Just ask Tesla. (Minnesota Reformer)
Bank CEOs express support for Supplemental Security Income reform Their support came at a Senate Banking Committee hearing. (CNBC)
Looking to find a caregiver for a loved one with special needs? Searching high and low for respite or Comm Hab to support your loved one’s Life Plan?
Get in line.
A new platform, Shivoo, currently available for individuals living in New York City and Westchester County, N.Y., hopes to help. Launched on Nov. 1, 2023, it connects children and adults with intellectual and developmental disabilities (I/DD) with caregivers and is open to all, regardless of an individual’s participation in New York State services.
The platform already has well over 700 caregivers in the system, some of whom have direct experience and others who are “peripherally” involved in the disability community, according to co-founder Susan Golkin. (For more on staffing, see the short Q&A below.) The service costs $20 a month to use but is reimbursable by Self-Direction and cancellable at any time.
The Boost spoke with Golkin, who along with co-founder Chancy Blumenfrucht is an independent Self-Direction broker, about the new platform. Our conversation has been edited for length and clarity.
You know the first question: What does Shivoo mean?
[Laughs] It’s an Australian word that means “party and community.” Everybody should be together in one community, and everyone should have the same opportunities.
And for that, you need staff.
Yes. There’s a massive crisis here. As brokers, we know people [with I/DD] without staff who just end up sitting on a couch, and parents who have to quit jobs to be the caregivers. The pressure is real.
How long has Shivoo taken from conception to up and running?
It’s been a few years’ journey. Originally we were thinking of creating an employment site because both Chancy and I believe everyone should have a job and that anybody can get a job. But people who hire people with I/DD kept asking about the individual bringing staff with them [such as a job coach]. We ran into this looking at other spaces, too, such as housing. The question kept coming up: “Where’s the staff?'”
You’ve said you’re hoping to help “revitalize” comm hab as a career option. Can you elaborate?
Some staff on the site may have direct experience working with individuals with disabilities or they’re peripherally involved and understand this [population]. They may be in special ed in some way or are nurses or LPNs. They’re all looking for either a career change or extra income from an opportunity they never knew existed. That’s our secret sauce.
We give them a 40-minute workshop, but we’ve also met with OPWDD [the Office for People with Developmental Disabilities] about working together on a micro-credentialing program and we’re hopeful that will happen.
Are there plans for expansion?
Yes. We’re dipping into Long Island now, and we hope to cover all of New York State in the future.
People need staff everywhere. We hope to be part of changing the way people see people with disabilities. They’re your next-door neighbor, they’re in the community with jobs — but for this [to become the norm], staff is needed.
If you’re paying privately, the hourly rate is up to you and the caregiver. If you have Self Direction, you can spend up to $35/hour depending on the FI and your budget.
On the Shivoo site — which you should read carefully — it’s noted that the platform does not conduct background checks, criminal checks or reference checks on staff. For those who qualify for Medicaid benefits through New York State’s Office for People With Developmental Disabilities (OPWDD) and enroll in Self Direction, a Fiscal Intermediary agency is required to perform fingerprinting and several background checks on prospective staff.
Be sure to check out the Shivoo FAQs page to get your other questions answered.
A BOCES campus builds a model downtown to teach living skills, a Broadway show features an autistic cast, new data on school disciplinary action reflects stark reality, and more news for the week ending Dec. 9, 2012.
I hope you can access the following link (The Boston Globe’s paywall is aggressive): What my autistic son’s cold cheeseburgers taught me about bureaucracy
A sharp commentary on how services and institutions make it difficult to implement even small, common sense changes, this Ideas piece — published back in May, but which I just discovered — is also funny and painfully relatable. (The Boston Globe)
Rockland BOCES creates ‘Safety City’ to help students with disabilities navigate streets A new, movie set-like street, complete with stores and being built on the campus by BOCES carpentry students, joins a new model residence to give students with disabilities a chance to polish independent living skills. (lohud.com)
Legislators call for SNAP benefit increase in Hochul’s budget The minimum benefit is currently a “not-feasible” $23 a month. (Times-Union)
Broadway’s ‘How to Dance in Ohio’ musical has an autistic cast with some strong Westchester connections (lohud.com)
Florida families take the fight for disability services into their own hands A mom-created advocacy group picks up steam in a state that ranks 49th for per-capita spending on services for people with disabilities. (WGCU.org)
New Mexico works to reduce abuse in disability program A horrendous abuse case has the state “trying” to address concerns. (KRQE.com)
Washington Special Ed School Accused of Abusing Students Closing Amid Scrutiny Northwest School of Innovative Learning was the state’s largest publicly funded private school for children with disabilities. (ProPublica.org)
What We Know About Autism — And How To Treat It — Could Change After New Study It’s the first time that the cellular workings of a neuropsychiatric disorder like ASD have been explored this deeply. (Disability Scoop)
A Successful Holiday Strategy for an Autism Family How to make a personalized book to help an autistic child get through the holidays. (Psychology Today)
America Promises Equality for Disabled Students. It’s Failing This engaging package of five stories spans how we got here to whether robots help autistic children learn social skills. (Mother Jones)
Kids with disabilities face off-the-books school suspensions The AP unpacks “informal removals.” (Associated Press)
New Data on School Disciplinary Action Reflects Stark Reality Students with disabilities, for instance, accounted for 81% of those physically restrained and 75% of those secluded. (Autism Society’s Capitol Connection)
The Arc’s Leigh Anne McKingsley’s on Disability Rights and the Criminal Justice System This might shock you: People with IDD are more likely to be arrested, charged with a crime, and serve longer sentences if convicted. The head of ARC’s Criminal Justice Initiative answers questions and shares vital information. (Comcast Newsmakers)
Voc Rehab Agencies Told To Beef Up Offerings U.S. Dept. of Ed says agencies need to provide more than minimal services. (Disability Scoop)
SSI Beneficiaries Will See Double Payments This Month Because the first of the month falls on a holiday, the payment is sent in advance and beneficiaries can expect two checks to arrive this month, but nothing in January. (Disability Scoop)
Disability Charity Speaks Out About Slur In Ricky Gervais’ Netflix Special He used the “r” word. (HuffPost.co.uk)
How a Chicago Volunteer Helps Migrant Kids With Disabilities The children, who survived journeys crossing jungles and rivers, have conditions such as autism, cerebral palsy and Down syndrome. (Governing.com)
Dan Habib, Project Director of Inclusive Communities at the Westchester Institute of Human Development (WIHD) and founder of LikeRightNow Films, is a multi-hyphenate filmmaker and educator who can now add Emmy winner to his resume. This past September, along with his co-director and son Samuel Habib, he took home the statue in the Documentary category of the News & Documentary Emmy Awards for My Disability Roadmap. The extraordinary short film follows Samuel, who was born with GNAO1, a rare neurodevelopmental disorder, and uses a wheelchair and communication device, as he meets successful adults with disabilities to help create a path for himself and others.
Habib was formerly Project Director and Filmmaker at the University of New Hampshire Institute on Disability (IOD), and served on President Obama’s President’s Committee for People with Intellectual Disabilities. His films, which have been screened worldwide, also include Including Samuel which chronicles the Habib family’s efforts to include Samuel in every facet of their lives, Intelligent Lives, which challenges the perceptions of intelligence through the eyes of three people with intellectual disabilities, and the upcoming feature-length documentary The Ride Ahead, His widely viewed Tedx talk, “Disabling Segregation,” on the benefits of inclusion in schools, can be found here. Our conversation has been edited for length and clarity.
Let’s start with Inclusive Communities. What is its mission?
We use the power of documentary film to create more inclusive communities. The focus is on education, employment, independent living — everything across the spectrum. The work is both regional and national in nature. We do a lot of webinars, and a big part of my work is making films, including for events and education material. I’m doing this for the most part remotely from New Hampshire, where we live.
You started out as a photojournalist. How soon after Samuel was born did you change your focus?
When Samuel was three years old [he turns 24 on Dec. 7] a few things happened. My wife, Betsy [McNamara], had taken a year-long leadership series for parents with kids with disabilities and self-advocates, much like like Partners in Policymaking NY. It was an incredible opportunity. She told me, “You have to do this, we have to be on the same page.” I did and I came out of it wanting Samuel to feel like he belonged in every aspect of our family and our community, and he couldn’t do this without knowing that belonged in our neighborhood school.
That year Samuel also got really sick and was in critical condition for several weeks. When he stabilized, his neurologist said, “Have you ever thought of telling the story of your family?” That’s when I started filming Including Samuel.
Watching that documentary I thought about my own experience and how I didn’t know how to surmount being told inclusion was not for my family member, that there would be no help, no aide available in a general ed classroom, and she would be better served in a special ed classroom.
The student is not the one with the problem, it’s the school that needs to change. Too many schools put the onus on family and not on changing the school’s approach to education. If anyone says to me, “We have this student who can’t be successful with inclusion,” I can tell them about a student in another district with a similar profile who has been extremely successful. It’s about following the law [the Individuals with Disabilities Education Act].
It doesn’t mean it’s easy, especially if a family has no other choice but to get into an expensive legal battle, which many cannot afford. But I’ve never met a family that regretted pushing for inclusion.
The documentary also shines a light on how beautifully the whole family, including Samuel’s older brother, Isaiah, interact, and how important this was to Samuel’s development. It’s great parenting.
It’s not just parenting, though. Without community support and the spirit of inclusion in our community in Concord [New Hampshire], Samuel would not have the life he has. Everyone was welcoming, from his preschool to the public school kindergarten to having downtown Concord accessible to wheelchairs to the local community college being fully accessible. It’s so many things.
And I learned from my parents, too. My mom was a social worker and my father was a college professor and they were always about impacting people in positive ways. As a teenager, it dawned on me that life is about increasing joy and decreasing pain however you do that. I found that filmmaking is the most effective vehicle for me to do this.
My Disability Roadmap follows a much older Samuel as he not only seeks guidance from successful adults with disabilities to help him chart his own path, but also pursues a goal to have people see those with disabilities as individuals who deserve respect and equal rights. So it was really something when he met then-Vice President Biden and Biden stroked Samuel’s face as if he were a child. Not surprisingly, that clip went viral. I have to ask: Did you ever hear from Biden?
To clarify, that clip went viral before it was included in the documentary. But no, we never heard from Biden’s camp!
Can you talk about your new film, The Ride Ahead?
Yes, it’s done! It just needs a few final touches.
It was co-directed by me and Samuel, and he did some camerawork with a GoPro. It’s a feature-length film about Samuel’s quest to become an adult and live the full life that he wants — independent living, relationships, sex. No one tells you how to be an adult much less one with a disability so it’s about his journey to navigate this.
We had actually planned for My Disability Roadmap to be a feature film, but about a year into production we shared a sizzle reel with The New York Times and they loved it, so they helped us develop it into a short, and [that NYT Op-Docs initiative] helped it go all over the world. We then did two more years of filming and editing, more in-depth interviews with incredible mentors, and added animation and a music score. Now we’re figuring out the film festival release plan for next year.
What is Samuel up to now?
In addition to his part-time job at WIHD, he’s working on his Associate Degree in a community college in Concord. He takes one class a semester. It’s very labor-intensive for him. Right now he’s taking statistics, has a 3.0 GPA and is mostly enjoying being on a college campus.
Talk about your dual roles as educator and filmmaker. Is there ever any tension there?
No, I wouldn’t say tension. I was a photojournalist for 20 years before I became a filmmaker full-time in 2008, and it’s always been about communication and education, and informing people about social issues and pressing topics. It’s not primarily about the craft and art of making film, it’s always about impact and social change.
I’ve always felt if I give people a look at what works and what can lead to success, in any area, and highlight those pathways, there’s a model for families to see.
What would you say has been a career high point, and a high point as Samuel’s father?
The moment we won the Emmy award was a high point on both those fronts. It was a film co-directed with Samuel and something close to our family’s heart that we created together. He was able to lead the production and was given a prestigious honor for a film that meant so much to us. It just blew our minds. And as a father, to see him get up on the stage and speak while using his communication device in front of six- or seven-hundred people, their eyes glued to him, it was incredible. [Watch Samuel’s speech here!]
But truly as a father, I’m proud of how much agency Samuel has in huge decisions in his life, like going to college or putting himself out there to get a girlfriend. I’m proud he has confidence and has worked hard to cultivate and advance that. He’s really not afraid to take risks and that’s something many of us can learn from him.
The New York City Department of Education has failed to appropriately identify, diagnose, educate and treat students with an Emotional Disability (ED) classification, according to a scathing report released this week.
A Crisis in Education found that the mental health and educational needs of the approximately 7,000 NYC public school students with a disability classification formerly known as Emotional Disturbance, and more recently as Emotional Disability, “have been all but ignored.” While eligible for special education protections under federal law, it notes that they’re consistently placed “in inappropriately restrictive settings and denied equal, meaningful access to educational opportunities and support.”
Additionally, it found these students are disproportionately students of color from economically disadvantaged backgrounds.
According to a press release shared by New York Lawyers for the Public Interests (NYLPI), the report “illustrates that the failures of the DOE, New York City, and NYSED have caused many students with ED to be illegally segregated in overly restrictive settings, deprived of a reasonable opportunity to make meaningful educational progress, inappropriately disciplined, and isolated from their general education peers.”
NYLPI, along with law firms Kasowitz Benson Torres and Stroock & Stroock & Lavan, authored the report, which also proposes a framework for the DOE to develop evidence-based systems and protocols.
The mental health and emotional wellness of students is a growing concern nationwide. This past spring, New York City published “Care, Community, Action: A Mental Health Plan for NYC,” a comprehensive mental health plan to alleviate and prevent emotional suffering, and, according to its website, “save lives,” but the new report states that “there has been no similar response from the DOE.”
The Individuals with Disability Education Act (IDEA) notes that an Emotional Disability means a condition exhibiting one or more of the following characteristics over a long period of time, and to a marked degree that adversely affects a child’s educational performance:
In other news, New York Gov. Kathy Hochul announced Nov. 30 that more than $5.1 million has been awarded to support 137 school-based mental health clinic satellites throughout New York State, including 82 at high-needs schools.
Administered by the New York State Office of Mental Health, the funding is part of the governor’s $1 billion plan to transform New York’s mental health care system, which includes a total of $8.3 million to support and expand these clinics throughout the state.
Photo: Pexels.com
Conventional wisdom dictates that it’s wrong to stare at people with a disability, but averting one’s eyes, whether out of kindness, unease, or a little bit of both, is also a way to render that person invisible.
Challenging the collective understanding of seeing and being seen is the inspiration behind the worldwide art piece On Display Global. Honoring the UN’s International Day of Persons with Disabilities on Dec. 3, the far-flung installation consists of a human “sculpture court” created by disabled performers and is based on stillness, giving the viewer the ability to see and the performer the ability to see back.
“On Display was created [in 2015] when a museum curator told me that whereas he saw real sculptures as beautiful he struggled with seeing real people portraying sculptures in the same way, especially those who had physical disabilities,” says Heidi Latsky, the brainchild of the project and founder and artistic director of Heidi Latsky Dance, a New York-based company that focuses on inclusivity and diversity.
“He was very ashamed of his response, but I was delighted he reached out to me to discuss this. I kept thinking about our exchange and formulated some creative responses. I wanted to create a safe space where the audience could really ‘look’ and the performers could ‘look’ back.”
When the New York City Mayor’s Office for People with Disabilities invited the company to create a work to celebrate the 25th anniversary of the Americans with Disabilities Act, Latsky says she “brought together a dynamic, diverse group of performers and we did On Display through the city. I loved the stillness in the bustling city as much as I loved the audience’s responses.”
And then on Dec. 3 of that same year, she adds, they performed the installation in the lobby of the United Nations while a colleague performed it in Hobart, Australia with her inclusive group.
Stavros Niarchos Foundation Library from noon to 1 p.m.
Those interested in performing must register by Dec. 2. Because The Boost is posting this so close to the deadline, regular training sessions are over. However, Heidi Latsky Dance has graciously suggested you contact Jamie at Jamie@heidilatskydance.org to discuss training videos and options.
For more information on the installation, click here.
A new New York law aims to boost detection of abuse of kids with I/DD, scores of disabled people are caught in the Israel-Hamas conflict, AI models may contain biases against people with disabilities, and more news for the week ending Dec. 2, 2023.
NYC leaders address after-school concerns of families with kids with disabilities The Committee on Youth Services spoke with the Department of Ed and other city agencies about addressing “gaps” in services. (News12 Westchester)
Law passed to boost detection of abuse of kids with I/DD The Office of Children and Family Services has been charged with developing and updating a training program on the challenges faced by children with I/DD. (CNY Central)
Dept. of Labor announces states joining initiative to increase competitive integrated employment New York is among the 12 “core states” chosen to participate in the National Expansion of Employment Opportunities Network initiative. (Dept. of Labor)
Florida leaves $800 million on the table for disability services Advocates say officials have let money fall through the cracks, money that would give 23,000 people on a waiting list the critical services they need. (Orlando Sentinel)
UCLA has a new disability studies major — the first of its kind at any public university in California California universities have struggled to institutionalize disability scholarship and to hire disabled faculty to teach it. (Los Angeles Times)
Colorado autism care providers worry proposed Medicaid adjustments aren’t enough to stabilize industry (Colorado Public Radio)
Disability News from Gaza and Israel A curation of recent articles about people with disabilities caught in the Israel-Hamas conflict. (Disability Brief)
Biden Administration Works to Increase Preschool Inclusion Officials outline steps to alleviate “significant barriers” to accessing inclusive childcare programs. (Disability Scoop)
A rift over ‘profound autism’ reveals a community’s deeper divide Amid a burgeoning neurodiversity movement, some say autistic children who are nonverbal and intellectually disabled are being left behind. (Washington Post)
When We Design for Autism, We Design for Everyone This article from October is a fascinating look at neuro-inclusive design. (Metropolis)
We’re facing a crisis in caregiving for the disability community New York organizations made clear to legislators and Gov. Hochul that a significant increase in pay for direct-support professionals was needed — and they were ignored. (Times Union)
The next Census could undercount the number of disabled Americans by 20 million This piece argues that the disability questions the Cenus is proposing to use undercounted this population in two other surveys. (Statnews.com)
Trained AI models exhibit learned disability bias The tools are driven by learned associations that often contain biases against persons with disabilities. (Penn State)
At Malls Nationwide, Santa Goes Sensory-Friendly More than 300 malls are set to participate in the events known as “Caring Santa.” (Disability Scoop)
This lovely market from Community Connections Life (CCLife.art), a hospitality platform that helps promote the lives of adults with I/DD based in Pelham, N.Y., features items made and sold by people with disabilities.
You can also expect an inexpensive menu of food that includes Christmas cupcakes, holiday lattes and cake pops.
Details
When: Dec. 8 and Dec. 9, 2023
Time: Friday 11 a.m. to 2 p.m., Saturday 11 a.m. to 3 p.m.
Where: 135 Radio Circle Dr., Mt. Kisco, N.Y.
This very cool one-of-a-kind pop-up shop is presented by Shames JCC on the Hudson.
All products being sold are from neurodivergent artisans. Get a peek ahead of time via Instagram where you’ll find two of the vendors: Upcycled handmade goods inspired by nature from Flowers + Fibers, @flowersplusfibers, and artwork by Will Richman, @will.richman.
Details
When: Dec. 10, 2023
Time: 10 a.m. to 1 p.m.
Where: 371 S Broadway, Tarrytown, NY 10591
Image: The screenshot is from the flyer designed by Mo Kikoler