The New Hampshire hub will provide basic information about congregate care settings.
“The reality is that many of today’s congregate care settings still have institutional-like conditions where people with disabilities face abuse, neglect, exploitation, and isolation,” writes the news site. The hub “provides basic information about each facility — who it serves, its capacity, where it’s located, photos, and its parent company — but also offers details that had previously been harder to access.
“It includes any police reports associated with that facility, the rights residents have specific to each facility, and the facility’s licensing information. The hub also allows people who live in, work at, or have a loved one in one of these facilities to report incidents. There are 71 facilities currently listed in the hub.”
If you know of any similar effort being worked on in New York, let me know.
Disabilities Beat: PPL announces bank cards for CDPAP PPL says they may alleviate some issues with payment (WRVO)
New York legislative health chairs eye action to address CDPAP issues (NY State of Politics)
New York’s cellphone ban: Exemptions explained It will not apply to students who need their device to manage a medical condition and whose IEPs mandate access to their devices. (Chalkbeat)
Autism center abuse whistleblower says there are other victims The Anderson Center whistleblower spoke publicly for the first time. (Fox 5 NY)
CT starts Purple Alert for missing people with cognitive disabilities (News 12 Conn)
NJ towns are spending millions to make playgrounds more accessible (North Jersey)
NJ group home residents face neglect, abuse and despair in a flawed system Calls for help to the state ombudsman have increased nearly threefold in the past five years. (North Jersey)
More than a dozen states, DC sue Trump administration over ‘dismantling’ of federal health agencies The states include New York. (CNN)
Kennedy Announces New Database for Research Into ‘Root Causes’ of Autism After weeks of confusion, the HHS Secretary announced a “real-world platform” that would allow researchers to examine insurance claims, electronic medical records and wearable devices like smart watches. It will draw the records from Medicare and Medicaid. (NYT)
Privacy concerns swirl around HHS plan to build Medicare, Medicaid database on autism (CNN)
In response to RFK Jr., Pritzker signs first in nation executive order protecting autism data (Chicago Sun-Times)
Arizona Autism Charter School Founder Tapped as Ed Dept. Special Ed Chief (The 74 Million)
‘She’ll fall through the cracks’: Parents of kids with disabilities brace for new reality (The 19th)
This Startup Has Created AI-Powered Signing Avatars for the Deaf (Wired)
Why people are using AI to fake disabilities like Down syndrome online (CBS News)
Most TV Characters With Disabilities Are Played by Able-Bodied Actors, Study Finds (Gothamist)
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.
Mon., May 12, 2025: Teen Parent Group: For parents of teenagers with developmental or physical disabilities. (Parent to Parent of NYS)
Mon., May 12, 2025: Parenting with Pride and Disabilities (for parents of individuals identifying in the LGBTQIA+Community): Parenting a child with disabilities that also identifies in the LGBTQIA+ community can bring about many challenges and questions. This group offers a safe space for parents and caregivers to discuss this unique intersectionality and share experiences. (Parent to Parent of NYS)
Tues., May 13, 2025: In-Person Traveling with Your Special Needs Child/Adult: Staten Island. An in-person “Lunch & Learn.” Whether it’s a day trip or a long vacation, get tips and tricks for planning and implementing a trip with your family member with special needs. (Parent to Parent of NYS)
Tues., May 13, 2025: Westchester Meeting of the Family Support Services (FSS) Advisory Council: Agenda to include discussion of the upcoming RFP for new funds available for FSS programs; slate in formation and upcoming elections for the new Board; and summer opportunities to get involved in the Council. Time: 6:45 p.m. Zoom link. Questions: Contact Sandi Rosenbaum, secretary, Westchester FSSAC, fssacwestchesternews@gmail.com.
Tues., May 13, 2025: Relationship Skills Group: Self-Advocates at the Community Support Network: Relationships Skills Group is an inter-abled group for young adults with disabilities to learn and practice social skills.
Tues., May 13, 2025: Transition to Rockland Community College (RCC): Support Services Panel: Gain an understanding of the differences between high school and college disability services; how to access various support services and what the guidelines are for disability documentation; become aware of student, faculty, and Office of Accessibility Services rights and responsibilities at RCC and more. (Rockland Transition Consortium)
Thurs., May 15, 2025: The New OPWDD Ombuds Program Town Hall: Get your questions answered. Register now. (NYC Fair)
Thurs., May 15, 2025: 37th Annual Family Support Conference – Bronx Developmental Disabilities Council Inc.: Space is limited, pre-registration is required. First come, first served. No “at the door/on-site” registration.
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)
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)
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)
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 10, 2025: Music for Autism presents Synaptic Groove Band: Synaptic Groove Band is a unique Long Island NY-based musical band that performs favorite musical hits while educating audiences about the benefits of music for health.
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.
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)
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: The Many Adventures of Winnie the Pooh (Credit: Courtesy of Jacob Burns Film Center).
Study finds severe autism rates are not the rise, a program to train people with disabilities to work in manufacturing, and more developmental disability news for the week ending May 2, 2025.
Some good news, and yet more proof that certain government funding cuts are deeply unpopular: A KFF Health poll found partisan agreement when it comes to funding cuts to Medicare, Medicaid and Social Security. More than nine in 10 Democrats, eight in 10 independents, and more than half of Republicans oppose cuts to each of the three programs.
NYC Ed Dept. partners with film festival to educate students about disability and filmmaking (City & State)
Rockland County Launches Initiative to Foster Autism-Supportive Environments (Rockland County Gov. Website)
Legal Aid Society alleges CDPAP administrator not paying workers (Times Union)
Immigrant Caregivers Say State-Backed Home Care Agency Stole Their Wages The new program’s fiscal administrator has been plagued with missed payments and language access issues. (Documented NY)
“Not enough training”: Former PPL workers say poor training plagued CDPAP payroll shift (CBS 6 Albany)
Health Execs’ Charity Gave Away Millions. Don’t Ask Where it Went. The company is providing bare-bones health insurance through CDPAP. (NY Focus)
Passaic County in NJ launches registry for individuals with disabilities (NJ.com)
Oklahoma reduces Developmental Disabilities Services wait time from 13 years down to 1 (News 9)
Manufacturing camp in Va. designed for individuals with disabilities (WBDJ 7)
New research contradicts RFK Jr.’s claim that severe autism cases are rising Research suggests that the share of autism cases with moderate or significant symptoms remained relatively consistent from 2000 to 2016. (NBC News)
Autism evaluations still being canceled over fears about now-canceled national registry (STAT)
Trump Administration Shuts Out Advocates, Researchers In Probe Targeting Autism (Disability Scoop)
‘I Can Hear Thoughts’ This takes a look at the Telepathy Tapes podcast, and the claim that some nonspeaking autistic people can read minds. (The Cut)
Not One Generation Removed, Disability Advocates Fear Return to a Dark Era Three families share what it took to win the right for special ed students to learn with nondisabled kids — and what’s at risk now. (The 74 Million)
A.J.T. v. Osseo Area Schools: The Case That Could Help or Harm America’s Disabled Students A pending U.S. Supreme Court case could make it much harder for students with disabilities to sue their schools for discrimination. (Center for American Progress)
Supreme Court appears likely to side with student in disability discrimination case (USA Today)
Special needs students are underserved in Defense Dept. schools, watchdog report finds (Stars and Stripes)
HHS Plans to Cut Funds Used to Investigate Abuse at Group Homes A leaked draft of the budget document shows by eliminating almost all of the disability infrastructure in this country providing for services, supports, [and] research will take away protection and advocacy agencies’ “access authority,” powers that allow them to independently investigate reports of abuse in facilities and community settings. (Mother Jones)
Traffic stops are stressful for any driver, but for those with autism spectrum disorder or related conditions there’s the added anxiety of police misinterpreting their behaviors. A growing number of states and localities are implementing ways to ease these interactions, and Westchester County has just added itself to the list with the Blue Envelope Program.
Being credited as the catalyst is Duff Bailey, an advocate and parent of an adult son with autism.
“This initiative is particularly meaningful to our family,” Bailey told The Boost. “We have an adult son with autism who has been driving for 15 years without any accidents or traffic infractions. Nevertheless, we fear that if he were ever involved in an incident, the stress of the situation could overwhelm him, and his behavior might be misinterpreted by law enforcement or others. [This] program provides a vital tool to prevent such misunderstandings, ensuring safer outcomes for everyone involved.”
Blue Envelope, which has caught on across the country, gives each participant an envelope to store their driver’s license, registration and insurance card. Participating police departments will be training officers to see and understand what the blue envelope signifies, and what to do when it’s handed to them. The envelope itself contains the information that aims to facilitate calm and effective interactions.
The envelopes can be gotten at participating police departments, or through the Westchester County Department of Public Safety, according to Bailey.
In January of this year, the New York State Sheriffs’ Association announced statewide implementation of the Blue Envelope program. The Westchester County training reinforces and ensures participation of local police.
Nearly half of all autistic individuals haves had an interaction with police, according to the 2024 Global Criminal Justice Survey. In a 2021 study in the U.S., up to 60% of autistic individuals reported living in fear of police contact, and autistic interactions with police are often described as “negative.”
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.
Mon., May 5, 2025: Promoting Independent Living for Individuals with Disabilities Through the Use of Assistive Technology and Enabling Technology (WIHD Community Support Network)
Wed., May 7, 2025: Learn About the New York Housing Resource Center New Website and All It Has to Offer: The New York Housing Resource Center acts as a clearinghouse for information on important housing-related topics for people with I/DD, their parents/caregivers, and the professionals who support them. (NYHRC)
Thurs., May 8, 2025: Lunchtime Discussion: Self Direction 2025, Understanding the role of the Fiscal Intermediary: Register by May 7. (Mid-Island Y JCC)
Tues., May 13, 2025: In-Person Traveling with Your Special Needs Child/Adult: Staten Island. An in-person “Lunch & Learn.” Whether it’s a day trip or a long vacation, get tips and tricks for planning and implementing a trip with your family member with special needs. (Parent to Parent of NYS)
Tues., May 13, 2025: Westchester Meeting of the Family Support Services (FSS) Advisory Council: Agenda to include discussion of the upcoming RFP for new funds available for FSS programs; slate in formation and upcoming elections for the new Board; and summer opportunities to get involved in the Council. Time: 6:45 p.m. Zoom link. Questions: Contact Sandi Rosenbaum, secretary, Westchester FSSAC, fssacwestchesternews@gmail.com.
Tues., May 13, 2025: Relationship Skills Group: Self-Advocates at the Community Support Network: Relationships Skills Group is an inter-abled group for young adults with disabilities to learn and practice social skills.
Tues., May 13, 2025: Transition to Rockland Community College (RCC): Support Services Panel: Gain an understanding of the differences between high school and college disability services; how to access various support services and what the guidelines are for disability documentation; become aware of student, faculty, and Office of Accessibility Services rights and responsibilities at RCC and more. (Rockland Transition Consortium)
Thurs., May 15, 2025: 37th Annual Family Support Conference – Bronx Developmental Disabilities Council Inc.: Space is limited, pre-registration is required. First come, first served. No “at the door/on-site” registration.
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)
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 a webinar on assistive technologies at the WIHD Community Support Network. (Credit: Pexels.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 JBFC Kids screenings have $5 tickets for everyone — kids and adults alike, Enjoy family-friendly films every Saturday at 11 a.m., plus the monthly sensory friendly screenings all at the new, lower price.
Sat., May 4, 2025: The Especially Everyone Experience, an inclusive concert: At the Shames JCC on the Hudson, Tarrytown. This interactive, sensory-friendly live music event is designed with neurodivergent-informed best practices so that people of all abilities can fully participate.
Sat. May 10, 2025: Music for Autism presents Synaptic Groove Band: Synaptic Groove Band is a unique Long Island NY-based musical band that performs favorite musical hits while educating audiences about the benefits of music for health.
Sat., May 17, 2025: Sensory-friendly screening of Wicked at 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.
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)
We Rock the Spectrum Kid’s Gym: There are two New York-based We Rock the Spectrum franchises, one in New Rochelle (Westchester County), the other Staten Island. Locations in Brooklyn and Long Island in the works.
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 Added: Jackie Robinson Museum in Manhattan!
The Boost’s Westchester County Recreation Resource List (Children and Adults)
I Love NY’s Accessible Places and Programs
Photo: New York State park. (Credit: Creative Commons)
Isolation & Neglect: Disability Advocates Fear Return to a Bleak Past Under HHS (74 Million)
Commentary: For independent living centers, Consumer Directed Personal Assistance Program (CDPAP is about care, not money (Times Union)
Families say new CDPAP payment system is a ‘mess’ (WHEC)
NYC commits $167 million to shore up early childhood ed system (Chalkbeat)
Former Eastchester convent now open for people with autism (Yahoo News via LoHud)
A perspective of New York from the eyes of a disabled person (Finger Lake Times)
Intellectually disabled teen shot by Idaho police dies after being removed from life support (AP)
Mass. Higher ed board approves new guidelines for students with disabilities (CommonWealth Beacon)
US autism rate continues to rise, CDC says, pointing to greater awareness and better screening (CNN)
RFK Jr. calls rising autism rate an ‘epidemic.’ (Stat News)
RFK Jr. said autistic people don’t work or play sports (Washington Post)
Kennedy pledges to figure out which ‘environmental toxins’ are causing autism (Politico)
What New Research Reveals about Autism, Stimming, and Touch (Univ. of Rochester)
Have We Been Thinking About A.D.H.D. All Wrong? (New York Times)
Maryland nightclub for people with disabilities celebrates 10 years (WBAL TV)
U.S. autism rate rises, a look at what could happen to special ed after its move to Health and Human Services, a Maryland nightclub for people with disabilities, and more developmental disability news for the week ending April 18, 2025.
Isolation & Neglect: Disability Advocates Fear Return to a Bleak Past Under HHS
While some say much of what the Trump administration envisions for special education is likely illegal, nonprofit news organization The 74 Million lays out what might happen if it goes through anyway:
Commentary: For independent living centers, Consumer Directed Personal Assistance Program (CDPAP is about care, not money The network of disability-led organizations served as far more than “fiscal intermediaries.” (Times Union)
CDPAP rally outside PPL’s new headquarters in Latham over missing paychecks (CBS 6 Albany)
Families say new CDPAP payment system is a ‘mess’ (WHEC)
NYC commits $167 million to shore up early childhood ed system The move will restore $55 million to help address chronic shortage of seats for preschool children with disabilities. (Chalkbeat)
Former Eastchester convent now open for people with autism (Yahoo News via LoHud)
A perspective of New York from the eyes of a disabled person Bobby Greco, a quadriplegic man from Geneva, advocates for getting a 7.8% increase in the state budget for nonprofit providers. (Finger Lake Times)
AI tool aims to catch abuse in group homes after shocking video (Fox 5 New York)
Intellectually disabled teen shot by Idaho police dies after being removed from life support The autistic, nonverbal teenage boy shot repeatedly by Idaho police from the other side of a chain-link fence has died. (AP)
Michigan parents of students with disabilities feel ‘hopeless’ as civil rights cases remain in limbo (Chalkbeat)
Mass. Higher ed board approves new guidelines for students with disabilities They’re aimed at creating more opportunities for students with “severe” developmental disabilities. (CommonWealth Beacon)
Phoenix group home caretaker arrested after patient with disabilities dies in his care (Arizona’s Family)
Bills in Congress detail path to closing Ed Dept. (K12 Dive)
DOGE abruptly cut a program for teens with disabilities. This student is ‘devastated’ (NPR)
US autism rate continues to rise, CDC says, pointing to greater awareness and better screening (CNN)
RFK Jr. calls rising autism rate an ‘epidemic.’ (Stat News)
RFK Jr. said autistic people don’t work or play sports (Washington Post)
Kennedy pledges to figure out which ‘environmental toxins’ are causing autism (Politico)
What New Research Reveals about Autism, Stimming, and Touch (Univ. of Rochester)
The genetic mystery of why some people develop autism (BBC)
Sweeping HHS Cuts Will Put Disabled and Older Americans’ Right to Live in Their Communities at Risk Dismantling the Administration for Community Living (ACL) and its programs will put residents at risk of institutionalization and food insecurity. (Urban Institute)
Have We Been Thinking About A.D.H.D. All Wrong? Some leading researchers express concern over a disconnect between emerging scientific understanding of A.D.H.D. and the way the condition is being treated. (New York Times)
Maryland nightclub for people with disabilities celebrates 10 years (WBAL TV)
First posted March 27, 2025
My name is Flip Polizzi Rivera and I want to share my story. Not for sympathy, but because people need to understand what independence truly means for someone like me.
I was born with cerebral palsy. My arms and legs don’t work the way most people’s bodies do. I use technology to communicate, a motorized wheelchair to move and I require assistance — or at least setup — for nearly every task.
But I am not helpless. I am a proud, determined man who has spent my life proving that my disability does not define me. Still, I won’t sugarcoat the reality: Independence is only possible with proper care and support. That is why I need to talk about the Consumer Directed Personal Assistance Program (CDPAP) and why it must be protected.
I relied on CDPAP to live life on my own terms. I fought to leave a 500-bed long-term care facility. I proved that people with significant disabilities can thrive in their communities — if they have the right support.
But now, the state is failing me and people like me in ways that put everything at risk.
My early years were rough. My mother faced struggles, and we lost our family home. My uncle, trying his best, became my guardian and placed me in a long-term care facility, believing it was my best option.
But living in a facility is not living — it’s surviving. My days were dictated by staff availability. If I needed to get out of bed, use the bathroom, or eat, I had to wait. That kind of life chips away at you. You are told you are safe and cared for, but without autonomy, is that really care?
Four years ago, I took back control. I reversed my guardianship, built a team of people who believed in me, and — through CDPAP — finally left that institution. CDPAP empowered me to hire caregivers I trust, return to my community, attend concerts, help others with technology, and contribute to society. The people I hire are not just my caregivers; they are my arms, my legs, my independence. And now, I am at risk of losing everything I fought so hard for.
The transition to a single Fiscal Intermediary under PPL has been a disaster. I rely on assistive technology to communicate, but PPL’s system is not built for people like me. Expecting individuals to call PPL to retrieve ID numbers and designate their facilitator is the opposite of accessible. I’ve been hung up on. Placed on hold for hours. Dropped from calls. Promised callbacks that never come. My caregivers and I have done everything in our power to complete this process, but the system is overwhelmed, riddled with errors, and unprepared to accommodate 700,000+ people.
The New York State Department of Health (DOH) has even run commercials suggesting they are “saving” us from so-called “greedy” FIs who are costing taxpayers money. If some FIs were suspected of fraud, the DOH should have done their job and overseen them. Instead, they closed them down and outsourced our home care to a Georgia-based company with a history of failure — a corporation that is partially owned by the consulting firm that recommended NYS transition to one statewide-FI. When caregivers heard about these shady, backroom deals, many quit immediately.
Trying to hire new caregivers during this chaos has been nearly impossible. And if my caregivers’ pay is delayed or disrupted, they will have no choice but to leave. They care about me, but they cannot work for free. And if they do not show up?
I cannot get out of bed.
I cannot transfer into my wheelchair.
I cannot access my communication device.
I cannot eat.
I cannot take my medications.
I cannot shower.
I cannot toilet.
I will become sick very quickly.
If my home care is disrupted, even for 12 hours, I will have no choice but to go to the hospital. That, too, will have devastating consequences. My SSI payments will be reduced. My bills will not be paid. I spent my life savings to buy and modify my home through my ESL special needs trust. If I cannot stay there safely with support from caregivers, I will lose everything.
And if that happens, there is only one place I can go: back to the nursing home where I was trapped for 15 years. That is morally wrong. No one should be forced into an institution because the state failed them.
I should not lose my way of life because of a rushed transition that cannot really be about saving money or improving efficiency (PPL is anything but efficient). So if this overhaul was never about saving money or eliminating fraud/waste, then why is NYS forcing it through?
Why did Gov. Hochul block the Comptroller’s investigation?
Why didn’t she ask CMS for permission to alter the program and take away consumer choice?
Why is she ignoring the growing number of state and federal officials, Republicans and Democrats alike, who are urging her to stop?
One of the people who worked in the nursing home I lived in is now a NYS Assembly Member, Josh Johnson. I am proud that he has spoken out against this plan from the beginning and demanded an extension. But even with bipartisan calls to halt this, the Governor refuses to acknowledge the harm she is about to unleash.
This is a manufactured crisis. People will lose their caregivers. People will be forced into institutions. And some might not survive it. Why would New York State want that blood on their hands?
This is not just policy. It could be a matter of life and death. It is the difference between a thriving, independent life and an existence stripped of dignity — or worse.
I should not have to fight for something I flat out qualify for. My Fiscal Intermediary has done nothing wrong. I have done nothing wrong. My caregivers are doing honorable work. And yet, we are all being harmed.
I will not let this happen without a fight.
Will you fight with me?
Flip Rivera Polizzi is a home care advocate and IT professional.
Photo credit: Freepik