Judge blocks Trump’s orders to dismantle the Education Department and fire employees The administration, naturally, will challenge the ruling. (AP)
The two consolidated lawsuits challenging the president’s order argued that layoffs left the department unable to carry out responsibilities required by Congress, including duties to support special education, distribute financial aid and enforce civil rights laws.
NYC schools fail to protect students with disabilities from lengthy suspensions (Chalkbeat)
Judge extends CDPAP transition deadline amid calls for more support and transparency (CBS 6 Albany)
Disabilities Beat: Legislators join push for ILCs to return as CDPAP fiscal intermediaries (WXXI)
Consumers requested extension of CDPAP preliminary injunction to Aug. 15 (Politico)
New Hampshire mom builds nonprofit to support adults with developmental disabilities (WMUR)
Florida families of children with developmental disabilities stuck in line for assistance (CBS News)
As Trump Shakes Up Oversight of Special Ed, Frustrated DC Parents Want Change The district reportedly has failed to identify and adequately serve thousands of students with disabilities and has one of the highest rates of special ed complaints in the nation. (The 74 )
Federal budget bill would squeeze state Medicaid budgets (Pluribus News)
Families of disabled children frequently struggle to pay medical bills (Washington Post)
Nonprofit Wants to Take on Civil Rights Cases Trump’s Ed Dept. Left Behind The National Center for Youth Law is hiring former department attorneys to resolve complaints. (The 74)
States Drop Effort To Overturn Section 504, But Continue To Challenge Disability Protections (Disability Scoop)
Supreme Court deadlock leaves in place ruling blocking nation’s first religious charter school (CNN)
Ill. Teacher Dragged 6-Year-Old With Autism by His Ankle. Federal Civil Rights Officials Might Not Do Anything. The department’s Office for Civil Rights regional office in Chicago was one of seven abolished by the administration in March. (ProPublica)
Specialized charter schools need to ensure inclusive practices, report says (K-12 Dive)
Exclusive: Trump administration defunds autism research in DEI and ‘gender ideology’ purge During the first four months of 2025, the NIH has reduced funding for autism-related research by an estimated $31 million to $116 million from $147 million in the same period in 2024. (Reuters)
For kids with autism, swim classes can be lifesaving (AP)
Autism Leaders United in Call for Action Following Roundtable in Washington D.C. (ASAN)
As autism ignites a national conversation, Temple Grandin has something to say (NBC News)
Many people with intellectual and developmental disabilities strive to live independently. But even those able to theoretically achieve that goal run into a major roadblock: the lack of affordable housing.
While there isn’t much in the way of uplifting news in New York’s recently passed fiscal year 2026 budget, there is some funding being allotted to help invigorate the state’s affordable housing stock.
The budget includes a variety of measures. Below are some points, courtesy of the New York State Homes and Community Renewal newsletter:
Photo: Downtown Buffalo (Credit: PICRYL)
The New York State Justice Center’s latest newsletter remembers the life of Mary St. Mark, who died this month at age 84. The mother and advocate was a force of nature, as were her four cohorts, who helped change the lives of countless individuals with intellectual and developmental disabilities (I/DD).
In honor of St. Mark, The Boost recommends you watch this wonderful video of the work done by St. Mark and her colleagues, Anna Mae Vener, Dorothy Stone, Mary Bonsignore (who passed away in 2020) and Nellie Velez, all of whom had or have children with I/DD. They devoted their lives to advocacy and profoundly impacted public policy starting in the 1960s and ’70s, at a time support was severely limited and in many instances nonexistent.
Perhaps best known as the “Ladies in Red,” among their signature accomplishments was in 1994, when through organizing and protesting they induced then-Mayor Guliani to restore cuts he had made to funding for people with developmental disabilities.
St. Mark was also president and chairperson of the Institutes of Applied Human Dynamics (IAHD) for nearly three decades, an active member of the Bronx Developmental Disabilities Council for over 50 years, and in 2014 joined the Justice Center Advisory Council as a parent advocate.
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here. It would be great to have more activities around the state.
RELATED: Your One-Stop Guide to Navigating I/DD System and Services via Webinars & Workshops
Tues., May 27, 2025: What’s Normal?: How Research is Supposed to Work: It’s important to know what ethical research look like and what rights people have around how personal information is used in research studies. This webinar covers what normal research looks like; what rights we have around our personal information; the dangers of bad research; and more. (ASAN)
Thurs., May 29, 2025: Early Intervention to Committee on Preschool Special Education (EI to CPSE) for Families: This presentation will guide parents through the process of transitioning their child from Early Intervention to the Committee on Preschool Special Education. (FACE Center, NYSED OSE Partnership)
Fri., May 30, 2025: Supplemental Security Income (SSI) Basics: Learn some tips and tricks to the application process. When and how to apply, the eligibility requirements and how to best make the process less stressful. (WIHD Community Support Network, Yonkers Public Schools)
Mon., June 2, 2025: HOV Readers with Disabilities Book Club, Self-Advocates at the Community Support Network: HOV’s Readers With Disabilities Book Club is a social group for young adults of all reading levels who love books. Play book-ish games, talk about favorite reads, and discover new books with all types of disability representation. Hosted by Mo Kikoler. There is no required reading to join each meeting. (Community Support Network)
Tues., June 3, 2025, or Thurs., June 5, 2025: Testing Accommodations for Students with Disabilities: Get information related to the decision-making process, the types of test accommodations that are available, and how they are documented on the student’s Individualized Education Program (IEP). (FACE Center, NYSED OSE Partnership)
June 10, 2025: American Association of People with Disabilities’ Tech Forum: The focus of our upcoming forum is the recently promulgated ADA Title II regulation on web accessibility. This landmark regulation establishes legal obligations for all state and local governments to ensure their websites, mobile applications, and digital documents are accessible to individuals with disabilities. (The American Assn. of People with Disabilities)
Wed., June 18, 2025: Brooklyn Developmental Disability Council Family Support Fair: Meet nearly 70 agencies that offer support to people with intellectual and developmentally disabled in Brooklyn.
Wed., June 18, 2025: Lunchtime Discussion: Self Direction 2025, Why is the Life Plan Important: Register by June 17. (Mid-Island Y JCC)
Fri., June 20, 2025: Manhattan Family & Professional Resource Fair 2025: Learn about programs and services, and connect with service provider organizations. Where: CUNY Graduate Center 365 5th Ave., Concourse Level, NYS (Manhattan Developmental Disabilities Council)
Thurs., July 10, 2205: Lunchtime Discussion: Self Direction 2025, Understanding IDGS & OTPS: Register by July 9. (Mid-Island Y JCC)
Thurs., Aug. 14, 2025: Lunchtime Discussion: Self Direction 2025: Understanding the budget template: Register by Aug. 11. (Mid-Island Y JCC)
Tues., Sept. 9, 2025: Lunchtime Discussion: Self Direction 2025: Launched, Now What?: Register by Sept. 8. (Mid-Island Y JCC)
Photo: Learn about transitioning your child out of early intervention on May 29. (Credit: RDNE Stock Project)
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here. It would be great to have more activities around the state.
DISCOUNT ALERT: All Jacob Burns Film Center Kids screenings now cost $5. Enjoy family-friendly films every Saturday at 11 a.m., plus the monthly sensory friendly screenings at the new, lower price.
Fri., May 23, 2025: Fun Fridays: Read & Relax: West Nyack. For youth with disabilities ages 14-24. Bring a book or borrow one to read for the hour. After a tour of the space and its activities, there’s reading time in the Palisades Center Sensory Room. (BRIDGES)
Sun., May 25, 2025: Inclusive therapeutic pickleball clinic: NYC. Recommended ages 7+. (Love Serving Autism)
Sun., June 8, 2025: Sensory-friendly screening of The Many Adventures of Winnie the Pooh: Jacob Burns Film Center, Pleasantville.
Sun., June 8, 2025: Adaptive Wheelchair Skating NYC 2025: NYC. Free adaptive skating clinic for those with disabilities at Hudson River Park Pier 62. (Play It Forward)
Sat., June 14, 2025: Get Outdoors & Get Together Day: Select locations around New York. Free, inclusive and accessible events to connect people to nature and increase outdoor access. For people of all abilities, ages, identities and backgrounds. Program and scheduling details for each location will soon be available on the NYS Parks website at parks.ny.gov. Guests are encouraged to bring picnic lunches and their own games or sporting equipment. For details about visitor amenities at each location, visit parks.ny.gov. (A partnership including OPWDD)
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Sat., June 21, 2025: Music for Autism: Pianist Llewellyn Sánchez-Werner: Brooklyn.
Sun., July 6, 2025: Sensory-friendly screening of Willy Wonka & the Chocolate Factory: Jacob Burns Film Center, Pleasantville.
Sun., July 13, 2025: Disability Unite Festival: NYC. The sixth annual Disability Unite Festival at Central Park. There will also be a livestream. (Disability Unite)
Sun., July 27, 2025: FOR ADULTS: SqueakyFest 2025, Live Comedy Show: New York City. The first-ever multi-city disability comedy festival. (Squeaky Wheel Media, a satirical website about disability, with a focus on physical disabilities)
AMC Sensory-friendly films: Ten AMC movie theaters around New York State offering sensory-friendly screenings. Go to the link to find the ones near you.
The Boost’s Guide to the Best Museums for People with Developmental Disabilities
The Boost’s Westchester County Recreation Resource List (Children and Adults)
I Love NY’s Accessible Places and Programs
Some states reexamine school discipline as Trump order paves go-ahead (Stateline)
Nonprofit group homes in New York face funding shortfall, leading to staffing crisis (AM NY)
New York bill introduced proposing new CDPAP compromise (NY State of Politics)
Commentary: PPL is failing caregivers and the people they care for (Times Union)
Churchill: For disability rights advocate, this ‘compassion’ is a threat (Times Union)
Bridgeport, Conn., school board backs plan to build new $125M school, $75M special education center (CT Post)
People with intellectual disabilities died and were injured at Pa. group homes. Regulators are taking action (MSN via Philadelphia Inquirer)
Missouri unveils plan to transform program for students with disabilities (Missouri Independent)
Oklahoma law now bans corporal punishment for students with disabilities (Oklahoma Voice)
Trump Official’s Autism Schools Secluded and Restrained Students at High Rates (The 74 Million)
OPINION: In Trump’s America, All Parents and Children for Themselves (New York Times)
The Dept of Ed Forced Idaho to Stop Denying Disabled Students an Education. Then Trump Gutted Its Staff. (ProPublica)
Everyone isn’t ‘a little bit autistic’ – here’s why this notion is harmful (The Conversation)
Experts call Kennedy’s plan to find autism’s cause unrealistic (AP)
How RFK Jr. is shaping the conversation about autism and why advocates are pushing back (PBS)
The ‘R-word,’ embraced by Joe Rogan and Elon Musk, inches back into the mainstream (NBC News)
An Undaunted Writer Who Broke an Invisible Barrier in Japan (New York Times)
How the new administrator of New York’s CDPAP program is failing just about everyone, the ‘R-word’ is not going away, and more developmental disability news for the week ending May 16, 2025.
Some states reexamine school discipline as Trump order paves go-ahead (Stateline)
Last month, President Trump signed an executive order to reinstate “common sense” school discipline, which repeals prior federal guidance that encouraged schools to address racial disparities in discipline. Now, reports Stateline, some states may follow suit and expand the authority of teachers and school officials to deal with disruptive students.
This is worrisome news not only for minority populations, but for students with disabilities. A host of data backs this up. For instance, the Ed Department’s Office for Civil Rights found that in the 2020-2021 school year, students with disabilities, who represent 12% of the enrollment in K-12 schools, accounted for 29% of students who received one or more out-of-school suspensions and 21% who received expulsions.
RELATED NEWS: Corporal Punishment Now Banned in All New York Schools
And in May of last year, The Hechinger Report reported that many states don’t share why kids are being kicked out of school, with discipline experts warning that a lack of guardrails can be used to justify suspensions for any behaviors, including minor ones.
There is some good news, Stateline writes. In recent years, some other states have passed laws promoting restorative practices in schools, in which students and teachers work through problems and focus on repairing the harm caused by disruptions or conflict.
Oh, and by the way, there’s this: Trump Official’s Autism Schools Secluded and Restrained Students at High Rates (The 74 Million)
Nonprofit group homes in New York face funding shortfall, leading to staffing crisis To add to this article, Governor Hochul’s refusal, once again, to make competitive wages available to non-profit human services workers and Direct Support Professionals will exacerbate this crisis. (AM NY)
New York bill introduced proposing new CDPAP compromise It’s a little unclear what this bill will do, but it seems to move things in a better direction. (NY State of Politics)
Commentary: PPL is failing caregivers and the people they care for “Despite what Gov. Hochul says, the problems affecting the CDPAP transition are far more than ‘hiccups.'” (Times Union)
‘They will be set back’: Clarence parents push back on relocation of specialized education classes (WKBW)
Churchill: For disability rights advocate, this ‘compassion’ is a threat A bill allowing physician-assisted death passed in the Assembly has some worried: “If they can’t stop people with disabilities from being born, then they’ll use assisted suicide to take them out on the other end.” (Times Union)
Bridgeport, Conn., school board backs plan to build new $125M school, $75M special education center (CT Post)
People with intellectual disabilities died and were injured at Pa. group homes. Regulators are taking action (MSN via Philadelphia Inquirer)
Missouri unveils plan to transform program for students with disabilities Missouri is the only state to operate separate day schools for special education, dubbed the Missouri Schools for the Severely Disabled. (Missouri Independent)
Oklahoma law now bans corporal punishment for students with disabilities (Oklahoma Voice)
OPINION: In Trump’s America, All Parents and Children for Themselves That the money earmarked for IDEA provide states with greater flexibility, which could mean drastically reducing oversight of how states use that money, is “our worst nightmare.” (New York Times)
The Dept of Ed Forced Idaho to Stop Denying Disabled Students an Education. Then Trump Gutted Its Staff. (ProPublica)
Everyone isn’t ‘a little bit autistic’ – here’s why this notion is harmful (The Conversation)
Experts call Kennedy’s plan to find autism’s cause unrealistic It ignores decades of science linking about 200 genes that play a role — and the quest to understand differences inside the brain that can be present at birth. (AP)
How RFK Jr. is shaping the conversation about autism and why advocates are pushing back (PBS)
The ‘R-word,’ embraced by Joe Rogan and Elon Musk, inches back into the mainstream (NBC News)
An Undaunted Writer Who Broke an Invisible Barrier in Japan Saou Ichikawa is the country’s first severely disabled author to win a top literary prize. Her novel “Hunchback” is an angry cry against “ableist machismo.” (New York Times)
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here. It would be great to have more activities around the state.
All are free unless otherwise noted.
Wed., May 21, 2025: Hear Our Voices! Disability Conversations Group, Topic: Disability Awareness: Join Brendan Klein and Liz Weintraub to learn about this past year’s Disability Awareness Month. Open to all NYS self-advocates. (Community Support Network)
Wed., May 21, 2025: Ending the Silence: Mental Health Awareness: Young people with disabilities such as autism or learning disabilities are up to five times more likely to develop mental health disorders than young people without other disabilities. In this presentation, participants learn the warning signs, steps to take, strategies to improve mental health, and more. It will also focus on how school districts and parents can work together to help students. (The Lower Hudson Valley Special Education Task Force)
Thurs., May 22, 2025: Water Safety and Drowning Prevention Webinar: This is designed to provide tools and strategies to safeguard individuals in and around water and increase actionable water safety strategies. You will be able to incorporate water safety measures utilizing Miss Dayna’s ABCDE’s of drowning prevention so that your loved ones can be safer today. (Autism Society)
Tues., May 27, 2025: What’s Normal?: How Research is Supposed to Work: It’s important to know what ethical research look like and what rights people have around how personal information is used in research studies. This webinar covers what normal research looks like; what rights we have around our personal information; the dangers of bad research; and more. (ASAN)
Thurs., May 29, 2025: Early Intervention to Committee on Preschool Special Education (EI to CPSE) for Families: This presentation will guide parents through the process of transitioning their child from Early Intervention to the Committee on Preschool Special Education. (FACE Center, NYSED OSE Partnership)
Fri., May 30, 2025: Supplemental Security Income (SSI) Basics: Learn some tips and tricks to the application process. When and how to apply, the eligibility requirements and how to best make the process less stressful. (WIHD Community Support Network, Yonkers Public Schools)
Mon., June 2, 2025: HOV Readers with Disabilities Book Club, Self-Advocates at the Community Support Network: HOV’s Readers With Disabilities Book Club is a social group for young adults of all reading levels who love books. Play book-ish games, talk about favorite reads, and discover new books with all types of disability representation. Hosted by Mo Kikoler. There is no required reading to join each meeting. (Community Support Network)
Tues., June 3, 2025, or Thurs., June 5, 2025: Testing Accommodations for Students with Disabilities: Get information related to the decision-making process, the types of test accommodations that are available, and how they are documented on the student’s Individualized Education Program (IEP). (FACE Center, NYSED OSE Partnership)
June 10, 2025: American Association of People with Disabilities’ Tech Forum: The focus of our upcoming forum is the recently promulgated ADA Title II regulation on web accessibility. This landmark regulation establishes legal obligations for all state and local governments to ensure their websites, mobile applications, and digital documents are accessible to individuals with disabilities. (The American Assn. of People with Disabilities)
Wed., June 18, 2025: Brooklyn Developmental Disability Council Family Support Fair: Meet nearly 70 agencies that offer support to people with intellectual and developmentally disabled in Brooklyn.
Wed., June 18, 2025: Lunchtime Discussion: Self Direction 2025, Why is the Life Plan Important: Register by June 17. (Mid-Island Y JCC)
Thurs., July 10, 2205: Lunchtime Discussion: Self Direction 2025, Understanding IDGS & OTPS: Register by July 9. (Mid-Island Y JCC)
Thurs., Aug. 14, 2025: Lunchtime Discussion: Self Direction 2025: Understanding the budget template: Register by Aug. 11. (Mid-Island Y JCC)
Tues., Sept. 9, 2025: Lunchtime Discussion: Self Direction 2025: Launched, Now What?: Register by Sept. 8. (Mid-Island Y JCC)
Photo: Attend Ending the Silence: Mental Health Awareness (Credit: Freepik.com)
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here. It would be great to have more activities around the state.
DISCOUNT ALERT: All Jacob Burns Film Center Kids screenings now cost $5 — for kids and adults alike. Enjoy family-friendly films every Saturday at 11 a.m., plus the monthly sensory friendly screenings at the new, lower price.
Sat., May 17, 2025: Sensory-friendly screening of Wicked: Bedford Playhouse. Sound levels are turned down and the lights are kept on low.Sing along, leave your seat, move or talk when you need to.
Fri., May 23, 2025: Fun Fridays: Read & Relax: West Nyack. For youth with disabilities ages 14-24. Bring a book or borrow one to read for the hour. After a tour of the space and its activities, there’s reading time in the Palisades Center Sensory Room. (BRIDGES)
Sun., June 8, 2025: Sensory-friendly screening of The Many Adventures of Winnie the Pooh: Jacob Burns Film Center, Pleasantville.
Sun., June 8, 2025: Adaptive Wheelchair Skating NYC 2025: NYC. Free adaptive skating clinic for those with disabilities at Hudson River Park Pier 62. (Play It Forward)
Sat., June 14, 2025: Get Outdoors & Get Together Day: Select locations around New York. Free, inclusive and accessible events to connect people to nature and increase outdoor access. For people of all abilities, ages, identities and backgrounds. Program and scheduling details for each location will soon be available on the NYS Parks website at parks.ny.gov. Guests are encouraged to bring picnic lunches and their own games or sporting equipment. For details about visitor amenities at each location, visit parks.ny.gov. (A partnership including OPWDD)
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Sun., July 6, 2025: Sensory-friendly screening of Willy Wonka & the Chocolate Factory: Jacob Burns Film Center, Pleasantville.
AMC Sensory-friendly films: Ten AMC movie theaters around New York State offering sensory-friendly screenings. Go to the link to find the ones near you.
The Boost’s Guide to the Best Museums for People with Developmental Disabilities
The Boost’s Westchester County Recreation Resource List (Children and Adults)
I Love NY’s Accessible Places and Programs
Photo: Willy Wonka & the Chocolate Factory (Credit: Courtesy of Jacob Burns Film Center).
First posted April 18, 2025
By Roberta Bernstein, Founder/Editor, The Boost
My niece, Molly (not her real name) is a vibrant, highly verbal (just try to interrupt her), active 31-year-old who craves agency over the decisions that affect her. Like all of us, she wants to choose how she lives her life. Molly also has intellectual and developmental disabilities and, because of this, needs support to help ensure she makes the best decisions, a reality that frustrates her as much as it helps to keep her safe.
Self-Direction, available to those eligible for services through the New York Office for People with Developmental Disabilities (OPWDD) and enrolled in the Home and Community Based Services (HCBS) waiver, has been an integral tool in Molly’s toolbox since graduating from a post-high school transition program. The goal of SD, designed to be person-centered program, is to give individuals a say in their lives by allowing their Medicaid dollars to be used for specific needs and wants.
This has given Molly the opportunity to take community classes she might not otherwise afford, participate in new activities and to use transportation that increase her independence while allowing her to stay within her limited SSI income. (Of course, living on her SSI budget is another challenge.)
But SD comes with some strict rules and regulations, some of which make little sense in the real world. A major one is how it requires an individual to have someone in their life who can afford to pay upfront and wait for reimbursement, which makes the program unattainable for a decent slice of the population.
Another, which affects Molly directly, are the regulations concerning self-hired community habilitation.
Molly lives in residential housing, more specifically, a certified house operated by a NYS provider agency. She moved there after a stint in an independent living program, where it became clear she needed more support than the program provided. When she moved into the house, her SD budget was cut significantly.
When Molly advocated for self-hired community habilitation to help with her stated Life Plan goals, among them community integration — especially important as the house is somewhat isolated and there’s no accessible public transportation — we went for it, even though the budget only afforded 4 hours a week for 15 weeks total. A pittance, but it was something, right?
Miraculously, Molly knew of a lovely, highly capable Direct Support Professional (DSP) who was able and happy to work with her. She was ready to go.
Or so we thought.
OPWDD denied the request because the DSP, who has a job, couldn’t start until 4:30 p.m. This wasn’t a problem for Molly. It still gave her plenty of flexibility to work on goals, such as prepping and cooking meals in the house’s smaller, basement kitchen, and attending the Friday dance she loves to attend, a dance she sometimes can’t get to — despite paying in advance — because other residents are going elsewhere, and there’s only one DSP able to drive the van.
The problem is that SD regulations, working on a formula based on parameters set in the HCBS waiver, mandate that self-hired community habilitation for group home residents starts by 3 p.m., and on weekdays only. The reason: The IRA is funded for and required to provide services needs after 3 p.m. and all weekend, and a resident’s budget cannot duplicate Medicaid costs.
This might make sense in a perfect world. The DSPs in Molly’s house are miracle workers, dedicated to creating better, safer lives for our loved ones despite criminally low pay. But they’re tugged a hundred ways as they strive to keep residents safe and healthy, active and fed. They cook, clean, take people to doctors and activities, counsel, support a variety of behavioral issues, and so much more. An extra hand to help with Molly is a win-win for everyone, even for the small time it’s allotted.
For OPWDD to willfully create and adhere to regulations that result in the opposite of the SD program’s mission to provide flexibility in how she spends her allocated dollars is not just nonsensical, it purposefully prevents Molly from being able to reach her goals, and to thrive.
It’s hard enough for our loved ones to fight upstream in an ableist world that still sees people with disabilities as “other,” much less grapple with state and federal red tape that trips them up at every turn. OPWDD can and must do better.