Governor Kathy Hochul’s 2025 State of the State address, or what Gothamist called “Gov. Hochul’s ‘last, best chance’ to save her political skin,” seemed to focus on Democrats that had drifted right with its emphasis on fighting crime and putting cash back into New Yorkers’ pockets
The 54-minute speech meant to rouse voters ignored the state’s developmental disability community, which is currently in crisis. And the governor’s disability-related proposals in the nearly 150-page 2025 State of the State Book failed to address any of that population’s pressing problems, including the need for Direct Support Professionals to earn a living wage.
RELATED NEWS: The Labor Crisis Putting People With Disabilities at Risk (The Nation)
The proposals mostly directly related to the I/DD community are to:
RELATED NEWS: N.Y. Gov Hochul proposes $75M genetics research center for portion of Former Willowbrook State School (silive.com)
The Boost reached out to Sen. Patricia Fahy, senate chair of the Committee on Disabilities, who in a press release called the address “a bold, game-changing vision,” for her response to a speech that left out the disability community. The Senator’s spokesperson told The Boost that she “plans to address her priorities as Disabilities Chair separately from the State of the State,” and that Fahy’s office is “working on a press release or media event to do just.”
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Prior to Hochul’s address, Assemblymember Angelo Santabarbara, assembly chair on the Committee on People with Disabilities, sent a strong letter to the Governor urging her to address the “ongoing challenges facing the Direct Support Professional (DSP) workforce in your upcoming Executive Budget.”
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The Boost also reached out to Santabarbara for his response to the governor’s address, and was sent the post-event press release that reiterated his stance on DSPs, but did not directly speak to a DSP living wage left out of the State of the State address and book.
Next up: The governor’s Fiscal Year 2026 Executive Budget on Jan. 21, 2025. Stay tuned.
Ongoing: Brain Injury Association of NYS Support Groups: A variety of times for survivors and caregivers.
January, 2025: OPWDD and National Center for Cultural Competence Family Listening Sessions: Part of an effort to improve communication, language access and outreach to underserved communities. They’re intended to hear about people’s experiences in accessing supports and services based on a family’s cultural beliefs and practices, in your preferred language, and that are appropriate and fair for your family member with IDD. For families currently receiving supports and services, or have received them in the past, or are unable to access supports and services. (Georgetown University National Center for Cultural Competence)
Tues., Jan. 21, 2025: Future Planning Series: How Do We Pass The Torch? Transition Planning in Preparation for Aging Series Workshop 4 – Care Support: A discussion on management of staff, benefits, career, recreational activities, and, if applicable, property and physical assets. (WIHD CSN)
Wed., Jan. 22, 2025: The Future of Paratransit in New York: A panel discussion, consisting of paratransit users and advocates. (New York Association on Independent Living)
Thurs., Jan. 23, 2025: Communication Matters in Special Ed: A Fresh Take in 2025: How to effectively communicate as a special ed stakeholder, including conflict-reducing strategies. (Lower Hudson Valley Special Education Task Force)
Thurs., Jan. 23, 2025, Thurs., Jan. 30, 2025 and Thurs., Feb. 6, 2025: Self Patience and Compassion: For Parents and Caregivers: Three-part virtual series designed to help you build patience and compassion for yourself while learning tools to stay grounded and present. Open to all. (NYC District 75 and FamilyKind)
Fri., Jan. 24, 2025: Family Guide to Transition Planning: Preparing Students with Disabilities for Life After High School (Lower Hudson Valley FACE CRPC, NYSED OSE Partnership and Yonkers Public Schools)
Fri., Jan. 24, 2025: Capital District Special Education Task Force Annual Reviews – Virtual Coffee Q&A: Meeting will answer questions about the annual review process, discuss how to best prepare for annual review meetings and more.
Wed., Jan. 29 2025 – Fri, Jan. 31, 2025: Community Support Network (CSN) Transition Institute: Will provide information to assist students in making a smooth transition to adulthood through effective planning, plus will share important tips on accessing transition services and supports in the community.
Thurs., Feb. 6, 2025: Voices of Experience: Family Stories and Essential Resources for Transitioning Students with Disabilities: Families of students with disabilities and other stakeholders, including professionals from education and vocational rehabilitation, hear directly from others who have navigated the transition from high school to adult life. (NTACT:C and the RAISE Center)
Wed., Feb. 26, 2025: The Relationship Between Emotional Regulation and Severe and Dangerous Behaviors: A large percentage of those with profound autism exhibit severe, intense, and dangerous behaviors. Finding the causes has been a priority for researchers. In collaboration with University of Pittsburgh, Stanford University, National Council on Severe Autism and Autism Speaks, you have the opportunity to hear about emotional regulation, its role in these behaviors and what interventions are available.
Image: Learn about the future of Paratransit.
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.
January, 2025 – June 2025: Decks & Dice: A Young Adults Game Group: Tarrytown, N.Y. For young adults with and without disabilities, ages 21-35, support staff welcome. Every last Sunday of the month. Cost: $5 (Shames JCC on the Hudson)
Wed., Jan. 22, 2025: Virtual Rhythm Nation Dance Party: Celebrate MLK day with this dance party, featuring songs that share his message of equality. (Daniel’s Music Foundation)
Fri., Jan. 24, 2025: Vision Board Workshop, West Nyack: A night of goal setting and crafting fun. (BRIDGES)
Sat., March 1, 2024: Music for Autism Virtual Concert: The concerts feature professional musicians, including Tony Award winners, Grammy-nominated classical artists, and Pulitzer Prize winners. To ensure equal access for all, every Music for Autism concert is fully subsidized. (Music for Autism)
April 24, 2025: Select Human Services Prom 2025: Select Human Services is hosting its first-ever prom at the Knollwood Country Club in Elmsford for 18 years old and under. Cost: $115 (Select Human Services)
Year-Round:
AMC Sensory-friendly films: There are 10 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 Added: Jackie Robinson Museum in Manhattan!
The Boost’s 2024 Westchester County Recreation Resource List (Children and Adults)
I Love NY’s Accessible Places and Programs
Photo: Virtual dance party! (Credit: freepik.com)
The New York State Council on Developmental Disabilities is offering funds for localities throughout NYS to implement innovative transportation projects that support people with developmental disabilities (DD) to better access their communities.
Applicants can apply for up to $10,000 to put towards improving transportation for people with DD.
Deadline: Fri., Jan. 31, 2025
Award Announcement: No later than Fri., March 14, 2025
Award Amounts: $2,000 – $10,000
Questions Due: Fri., Jan. 24, 2025
Answers Posted: Tues., Jan. 28, 2025
All applicants must be a registered Vendor in the NYS Statewide Financial System (SFS). Proposals received from eligible applicants who have not been registered will be disqualified from further consideration.
Click here for complete information.
The Autism Campus Inclusion (ACI) Leadership Academy helps autistic students learn to make their college campuses better for people with disabilities. ACI participants learn about making student groups, understanding disability policy, and talking to people in power.
Past students have learned new skills and information about:
After ACI, students get help from ASAN to meet their advocacy goals at their college. ACI 2025 will be held from July 14 – July 20, 2025.
This year’s ACI program will be held virtually.
To apply for Autism Campus Inclusion (ACI) you must:
Students of color, LGBT students, low-income students, students with intellectual disabilities, AAC users, and students from other marginalized communities to apply are especially encouraged to apply.
Deadline: Sun., March 9th, 2025
Email to: Dean Strauss, dstrauss@autisticadvocacy.org.
Contact: If you need assistance or accommodations at any stage, or have any questions about ACI, contact Dean Strauss, dstrauss@autisticadvocacy.org.
The DSP crisis, New Jersey’s I/DD ombudsman’s asks gubernatorial candidates to get serious about disabilities, caregiver confessions, and more news for the week ending Jan. 17, 2025.
The lack of a living wage for the DSP workforce is a disgrace. So I was so thrilled to see The Nation dig into the labor crisis with a piece that underscores how action is desperately needed.
The Labor Crisis Putting People With Disabilities at Risk (Thenation.com)
A few excerpts:
Sheriffs launch Blue Envelope program statewide The New York State Sheriffs’ Association announced the statewide implementation of the Blue Envelope program. (Times Union)
NY Governor Approves Long-Sought Law Blocking Payments for ‘Broken’ Adoptions Additional legislation signed into law will identify the needs of kids in the system living with a developmental disability. (imprintnews.org)
NYC spent $1.3B on private education for students with disabilities last year The spending has continued to skyrocket despite efforts to serve more students with disabilities within the public school system. (Gothamist)
Dutchess County Launches Think Accessible Stakeholder Group to Enhance Community Accessibility (Dutchessny.gov)
20 things you don’t know about me: John Levendosky, special ed teacher (Times Union)
Nicholas Center in Port Washington helps people with autism who age out of school (Newsday.com)
Rep. Torres re-ups call for probe of $9B Medicaid home care contract of New York The “Hochul administration has handed a de facto sole-source contract … to PPL while at the same time receiving consultation about Medicaid reform from PCG, whose executives just happen to have a 25% ownership interest in PPL.” (spectrumlocalnews.com)
NYS pushes back against ad campaign criticizing change in home health aide program The state health commissioner counters what it calls “lies” in a campaign from lobbying group The Alliance to Protect Home Care over control of the Consumer Directed Personal Assistance Program. (Newsday.com)
Opinion: Hochul’s Threat to New York’s Home Health Care “As a quadriplegic New Yorker and caregiver team, we know that for many disabled or chronically ill people … any disruption to CDPAP would be inhumane.” (Daily News)
Candidates for NJ governor, please make people with disabilities a priority | Opinion “As you know, disabilities affect people across every community, every socioeconomic group, every political party. Indeed, I would venture to guess that every New Jersey family includes someone — a close relative or friend — who has at least one disability. And I would venture to guess that many of them have not been able to obtain the support and services that they need and deserve.” (northjersey.com)
Autism awareness program launched by South Jersey police (Fox29.com)
Waterbury, Conn., police get training on interacting with people with autism and other disabilities (wtnh.com)
Caregiver Confessions: ‘How Much More Can We Take?’ Eleven people share their fears, resentments, and guilt. (New York Magazine)
Q&A: Why physicians struggle to care for patients with disability (Statnews.com)
Top scholar says evidence for special ed inclusion is ‘fundamentally flawed” Last week, I posted a piece from NPR on how well students with disabilities do in integrated settings per numerous studies. A paper coming out this spring says not so fast. (Hechingerreport.org)
Project 2025’s Plan to Dismantle Public Education—And Screw Over Disabled Kids (Motherjones.com)
Studies have shown that natural disasters disproportionately affect persons with disabilities. Here, some reports out of the Los Angeles-area fires.
Altadena family says disabled father and son were left to burn: ‘Nobody was coming (Los Angeles Times)
Fleeing the LA fires alone on a wheelchair: ‘I had to take my chances’ (theguardian.com)
In California wildfires, disabled people may be left behind (sf.curbed.com)
Autism Affects More Than 60 Million Worldwide, Study Finds As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published recently in the journal The Lancet. (Disability Scoop)
Check out the Public Policy Goals of the Autism Society of America for the 119th Congress and the Administration (Autism Society)
SS Benefits to Change Under New Bill: Here’s Who’s Impacted A look at the bill introduced by U.S. Senators Jerry Moran (R-Kan.) and Chris Van Hollen (D- Md.) that aims to remove the penalty on disability benefits for SSI recipients who choose to marry. (Newsweek)
Under Trump, Medicaid Faces a ‘Reset Moment’ Lawmakers in all states are wondering what sort of cuts may be coming. (Governing.com)
Q&A: How this federal court ruling helps nursing home residents with disabilities A federal court ruled that the District of Columbia unlawfully segregated people with disabilities, stressing the importance of access to home and community-based services (HCBS). (statnews.com)
Biden Signs Think Differently Database Act into Law The online clearinghouse will provide localized, searchable information on Medicaid services, health care, mental health care and other critical supports for people with disabilities and their families. (Ancor.org)
Welcome to the 2025 legislative session, where two positions crucial to the welfare of the intellectual and developmental disability community have been filled.
New York State Sen. Patricia Fahy has been appointed as Chair on the Senate’s Standing Committee on Disabilities for the 2025-26 session, and Assemblymember Angelo Santabarbara Chair on the Assembly’s People with Disabilities Committee.
“OPWDD looks forward to working with the new legislative Chairs of the Senate Disabilities Committee and Assembly People with Disabilities Committee … to further advance supports and services for people with developmental disabilities,” OPWDD Acting Commissioner Willow Baer shared with The Boost in an email.
“Both members have a history of working closely with our agency in support of issues that benefit people with developmental disabilities and their frontline support staff,” Baer continued, “and we are excited about the leadership and advocacy these new chairs will bring.”
Fahy replaces Sen. John Mannion, who left the state Senate to join Congress, while Santabarbara takes the slot formerly filled by Assemblymember Rebecca Seawright, who has been appointed Chair of the Aging Committee.
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First elected in 2012, Fahy, in her role in the State Assembly, served as Chair of the Assembly’s Higher Education Committee, and served on four additional committees as well. In 2019, she received the NYS Industries for the Disabled’s (NYSID) Legislative Champion Award for work on behalf of individuals living with developmental disabilities.
You can contact the senator’s office at (518) 455-2225, Fahy@nysenate.gov.
Santabarbara has long championed disability issues. His official bio notes that his son Michael, has autism: “This life-altering event prompted Angelo to transition from his more than 15-year career as a civil engineer to embark on a path of public service and advocacy for people with disabilities.”
RELATED NEWS: NY State Assemblyman Angelo Santabarbara’s Personal Mission of Advocacy on Behalf of New Yorkers with Disabilities (Autism Spectrum News)
Below is Santabarbara presenting a proclamation from the Assembly recognizing the Autism Society Greater Hudson Region, New York for 30 years of service and supports.
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Santabarbara was elected to the Assembly n 2012. He’s a member of several committees, including on Mental Health, and has been involved in several pieces of disability-related legislation,
You can contact Santabarbara’s office at 518-455-5197, SantabarbaraA@nyassembly.gov.
CDPAP’s bumpy road continues, a N.J. gubernatorial candidate says people with disabilities would be a priority, Congress extends Autism CARES Act, and more developmental disability news for week ending Jan. 10, 2025.
New York City mom sets out to improve life for her son with autism (Good Morning America)
Jackie Ceonzo, founder and executive director of the nonprofit SNACK & Friends and a lead advocate with the Coalition for Self Direction Families of NYS (C4SD), was given a much-deserved segment on Good Morning America’s Trailblazing Women series.
The segment shares the story of Ceonzo’s oldest son, Joey, being diagnosed with severe autism at a time autism was not part of the national conversation. After Joey was turned down from participating in even special needs activities, Coenzo says, she got to work, launching SNACK in 2003.
“As a country we have not invested in this population at all,” Ceonzo tells GMA. “We’ve just kicked the can down the road.”
Another Voice: Direct service professionals need our support NYS Assemblywoman Karen McMahon on the critical need for the state to include a 7.8% Medicaid pay rate increase “to stabilize services for people with disabilities.” (Buffalonews.com)
Private Insurers Must Now Cover Dyslexia Testing in New York The bill is the first of its kind passed in the U.S. for diagnostic tests known as neuropsychological exams. (New York Times)
Kids with dyslexia still leaving NYC public schools despite Mayor Adams’ pledge “The dysfunctional system that divides students who struggle to read between the haves and have-nots largely persists.” (Gothmist.com)
State to review traumatic brain injury care The legislation directs the state’s Traumatic Brain Injury Services Coordinating Council to conduct a statewide review of brain injury care. (Times Union)
Mother’s dedication to helping daughter inspires traumatic brain injury legislation in N.Y. (Spectrumlocalnews.com)
Buffalo Niagara International Airport to launch Hidden Disabilities Sunflower program (Spectrumlocalnews.com)
What to know as NYS begins CDPAP transition amid legal limbo For one, aides may not be paid the same rate they earn now, but Public Partnerships isn’t ready to say how much aides will be offered. (Times Union)
Judge puts CDPAP transition partially on hold The order prevents the DOH from requiring All-American Homecare to convey to “any third party” information about consumers and their personal care workers. (Waer.org)
Court ruling throws wrench in New York state’s Medicaid home care program transition The decision sets a precedent that could open the transition up to other legal challenges of companies transferring confidential patient data. (Spectrumlocalnews.com)
Over 1,000 callers hit new Medicaid home care transition hotline What a mess, although the article notes that one group had people call in before the hotline’s official start. (Spectrumlocalnews.com)
Sweeney: As NJ governor, I will make people with disabilities a top priority | Opinion (Northjersey.com)
DOJ finds Oklahoma City police discriminate against people with behavioral disabilities The city unnecessarily institutionalizes adults with mental illness and the police department often escalates crisis situations. (AP)
Kentucky mother wants to expand who can have cameras in residential facilities (Kentuckylantern.com)
New Alabama law requires firefighters to complete invisible disabilities training NYS, FYI, has no mandate, but does offer first responder training. (Wsfa.com)
Special ed students benefit from being integrated at school. It doesn’t always happen (NPR)
AI is a game changer for students with disabilities. Schools are still learning to harness it Getting the latest technology into the hands of students with disabilities is a priority for the U.S. Ed Dept. Of course, there are concerns. (AP)
Congress extends Autism CARES Act for 5 more years The federal law will provide nearly $2 billion for research, training and services, including for early detection and interventions. (k12dive.com)
How Electroconvulsive Therapy was life-changing for one teen with autism and catatonia (Colorado Public Radio)
Genetic Testing May Alter Care For Almost Half With Neurodevelopmental Disorders A new study finds that 42% of those who did genetic testing learned that they had or likely had a rare genetic condition. (Disability Scoop)
Ed Dept pulls school-based Medicaid proposed rule Supporters said the rule make it easier for schools to be reimbursed for school-based Medicaid services. (k12dive.com)
Hollywood’s Disability Coordinators Streamline Production, Expand Access Production Access Coordinators play a burgeoning new role in the entertainment industry. (Thewrap.com)
Ongoing: Brain Injury Association of NYS Support Groups: A variety of times for survivors and caregivers.
January, 2025: OPWDD and National Center for Cultural Competence Family Listening Sessions: Part of an effort to improve communication, language access and outreach to underserved communities. They’re intended to hear about people’s experiences in accessing supports and services based on a family’s cultural beliefs and practices, in your preferred language, and that are appropriate and fair for your family member with IDD. For families currently receiving supports and services, or have received them in the past, or are unable to access supports and services. (Georgetown University National Center for Cultural Competence)
Sat., Jan. 11, 2025: Teen Parent Group- for parents of teenagers with developmental or physical disabilities:From navigating adolescence to managing behaviors and fostering independence, our group provides a safe space for open discussions about all things teen related. (Parent to Parent of NYS)
Mon., Jan. 13, 2025: Parent to Parent of NYS Father Group: Discuss the role of dads in navigating their children’s special needs. (Parent to Parent of NYS)
Tues., Jan. 14, 2025: 10 Basic Financial Steps for Families to Consider: From applying for government benefits and consideration of a letter of intent to a general overview of the ABLE act and special needs trusts. (Rockland Transition Consortium)
Tues., Jan. 14, 2025: Family Forum: Preparing for Your Child’s Annual Review: Explore how parents can effectively prepare for the annual review and be an effective member of the CSE. (Lower Hudson Family and Community Engagement (FACE) Center)
Tues., Jan. 14, 2025: Office for People with Developmental Disabilities (OPWDD) Services and Eligibility (WIHD Community Support Network)
Wed., Jan. 15, 2024: OPWDD Self-Direction: The individual must be eligible for OPWDD services and participating in Care Management services through a Care Coordination Organization (CCO) to be approved for self-direction. (WIHD Community Support Network)
Wed., Jan. 15, 2025: Disability Conversations: “Hear Our Voices” Self Advocacy Group Meeting: “Hear Our Voices” Self Advocacy Group Monthly Meeting.
Wed. Jan. 15, 2025: Supported Decision Making. What is it and how to get started: Learn more about it and how to get started with Naomi Brickel from Supported Decision Making New York. (Parent to Parent NYS)
Wed., Jan. 22, 2025: The Future of Paratransit in New York: A panel discussion, consisting of paratransit users and advocates. (New York Association on Independent Living)
Jan. 23, 2025, Jan. 30, 2025 and Feb. 6, 2025: Self Patience and Compassion: For Parents and Caregivers: Three-part virtual series designed to help you build patience and compassion for yourself while learning tools to stay grounded and present. Open to all. (NYC District 75 and FamilyKind)
2025 Fred J. Epstein Youth Achievement Awards: Nomination deadline is Jan. 15, 2025: The awards from Smart Kids with Learning Disabilities® recognizes the outstanding accomplishments of young people with LD and ADHD who make a lasting impact on their schools and communities.
Photo: Do some self-care in January and February vis the Self Patience and Compassion webinars. (Credit: Max van den Oetelaa, Unsplash.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.
Sat., Jan. 11, 2025: Get Fit with Just Right Fitness in Bed-Sty Brooklyn: School-age children with special needs get a work out with a certified trainer while families chat. (Uniquely Me Creative Arts)
Sat., Jan. 11, 2025: NY Botanical Garden Holiday Train Show Sensory Friendly: Sensory Friendly Mornings for a calmer visit to the Holiday Train Show. Additionally, ticket provides access to NYBG’s outdoor gardens and collections.
January, 2025 – June 2025: Decks & Dice: A Young Adults Game Group: Tarrytown, N.Y. For young adults with and without disabilities, ages 21-35, support staff welcome. Every last Sunday of the month. Cost: $5 (Shames JCC on the Hudson)
April 24, 2025: Select Human Services Prom 2025: Select Human Services is hosting its first-ever prom at the Knollwood Country Club in Elmsford for 18 years old and under. Cost: $115 (Select Human Services)
Year-Round:
AMC Sensory-friendly films: There are 10 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 Added: Jackie Robinson Museum in Manhattan!
The Boost’s 2024 Westchester County Recreation Resource List (Children and Adults)
I Love NY’s Accessible Places and Programs
Photo: Play games in Tarrytown! (Credit: Pexels.com)