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.
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
First posted Dec. 12, 2024
Welcome to The Boost’s second annual summer day camp special.
The camps listed below are in the LoHud area (plus one college readiness program in Mayfield, N.Y.), and focus on programs for people with a range of developmental disabilities. The Boost is interested in growing this list to cover as much of New York State as possible so, if you have a camp to add, please contact us here. Given The Boost’s minuscule staff, this would be immensely helpful!
Two things to note:
CAMP SUNSHINE & SUNSHINE TEENS
(Green Chimneys) HILLSIDE CAMP
(Green Chimneys) CLEARPOOL
NEW!: GREEN COVE DAY CAMP
NORTH EAST WESTCHESTER SPECIAL RECREATION CAMP
SOUTHEAST CONSORTIUM (SEC) DAY CAMPS and SUMMER TEEN LIFE & LIFE EXPERIENCE PROGRAMS
(SEC) SCARSDALE DAY CAMP (CAMP WAPETUCK & CAMP PATHUNKE)
(SEC) EASTCHESTER DAY CAMP (CAMP GALAXY)
(SEC) TEEN LIFE PROGRAM
(SEC) LIFE EXPERIENCE PROGRAM
TRANSITIONS SUMMER IMMERSION EXPERIENCES
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.
Applications are open for Westchester Institute of Human Development (WIHD)’s LEND program
LEND (Leadership Education in Neurodevelopmental and related Disabilities) is an interdisciplinary leadership training program on Thursdays from early September to early May.
It’s funded by the Maternal and Child Health Bureau of the federal government at 52 sites around the country.
The LEND Program at WIHD is for two semesters. LEND trainees include graduate students and post-doctoral fellows; self-advocates; and family members of children and adults with disabilities. Trainees develop knowledge and skills they will need to become leaders working with and on behalf of children with disabilities and other special health care needs, and their families, to improve health outcomes and decrease disparities.
Wed., April 23, 2025: Behind the Curtain: Understanding State Administration of Self-Direction: This session offers an inside look at how states administer self-direction programs. (Applied Self-Direction)
Thurs., April 24, 2025, Thurs., May 22, 2025, Thurs., June 26, 2025: Positive Solutions for Families (Series): Three sessions (out of four) remain in this series; attending all was optional, but encouraged. April 24 is Behavior Has Meaning & the Power of Routine, May 22 is Teach Me What to Do & Responding with Purpose, and June 26 is Putting It All Together with a Plan. (FACE Center and NYSED OSE Partnership)
Fri., April 25, 2025: Disability Mayoral Forum and discussion with candidates on accessibility and inclusion of NYC (CIDNY)
Fri., April 25, 2025: Agency 101 – Connecting Individuals with Disabilities to Adult Services: Identifying State and community-based agencies that may be able to provide services to young adults with disabilities is a critical component of transition planning for life after high school. This session will offer a broad overview of several core disability service systems. (FACE Center, NYSED OSE Partnership, LHRPC and Yonkers City School District)
Mon., April 28, 2025: Redefining Consequence: Considerations and Strategies for Effectively Addressing Challenging Behaviors Demonstrated by Students with Disabilities: Learn how the many conventional ways of responding to difficult behavior often contributes to the persistence of such behavior; particularly when applied to students with disabilities and neurodivergence (e.g., Autism, ADHD). Practical evidence-based strategies will be offered. (The Lower Hudson Special Education Task Force)
Mon., April 28, 2025: CPSE to CSE Transition for Parents/Planificación para Transición de Educación Especial PreEscolar a Kindergarten (CPSE a CSE): This workshop will help participants to understand the transition process, to be an active member of the transition team, to understand the difference between services in CPSE and CSE, and to understand the purpose of an IEP. (FACE Center, NYSED OSE Partnership and Greenburgh Central School District)
Tues., April 29, 2025, Wed., April 30, 2025 or Thurs., May 1 , 2025: 2025 Justice Center Family Engagement Series: Receive an overview of the Individual and Family Support Unit and the services and support provided to people receiving services and family members/personal representatives as they navigate the investigative process. A focus on Effective Advocacy will be provided.
Tues., April 29, 2025: Pre Employment Transition Services (Pre ETS): (WIHD Community Support Network, Access VR and University of Rochester Medical Center)
Tues., April 29, 2025: When I’m Gone, Then What?: Future Planning Workshop for Parents of People with Disabilities: Registration required. (Brooklyn Library)
Wed., April 30, 2025: Get to Know the ADA: Equality and Access for new Americans with Disabilities: Topics include how the ADA protects the civil rights of individuals with disabilities and strategies to assert ADA rights without fear of retaliation. (The Northeast ADA Center and NYS Office for New Americans)
Thurs., May 1, 2025: Buffalo OPWDD Open House: Learn about developmental disability services, connect and network. Where: OPWDD, 1021 Broadway St., Buffalo. Time: 2 p.m. to 6 p.m. If reasonable accommodations are needed call 718-517-2010.
Thurs., May 8, 2025: Lunchtime Discussion: Self Direction 2025, Understanding the role of the Fiscal Intermediary: Register by May 7. (Mid-Island Y JCC)
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., 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)
the purpose of the Staff Action Plan?
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: Positive Solutions for Families webinar to help with challenging behaviors. (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: Starting this month (April, 2025), all JBFC Kids screenings will offer $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., April 19, 2025: Uniquely Me Creative Arts’ – Spring Sensory Festival: Brooklyn. This meets the second Saturday of every month. It provides invaluable family support groups called “family chats,” where caregivers can explore important special needs topics, share experiences, and access essential resources.
Thurs., April 24, 2025: Especially Everyone Open Mic Night at River House: An inclusive open mic. Perform or enjoy the entertainment. Address: 125 River Rd Ext, Cos Cob, Conn.
Mon., April 28,2025: Flag Football with the New York Giants: An evening of football, fun, and community. At Pace University in Pleasantville. For athletes of all abilities. Cost: $25 and includes an official NFL football for autographs. (Able Athletics)
Wed., April 30, 2025: Neurodiversity Celebration Event at the Katonah Village Library
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.
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: Mandala rock painting in West Nyack. (Credit: Unsplash.com)
New York state lawmakers approved a sixth budget extender Thurs., April 17, before heading back to their districts for the holiday weekend. Reports say progress has been made, but, in the meantime, NYC Fair, an advocacy group comprised of family members of individuals with intellectual and developmental disabilities (I/DD) and concerned others, reminds us that it’s an opportunity to continue advocating for people with intellectual and developmental disabilities.
Here are some of its suggestions:
Social stories help people understand what to expect when they enter a space or event. While bigger institutions, like museums, are beginning to use them on their websites, it’s a good idea for even smaller event programmers to consider them as well.
RELATED: Best NYS Museums for People with Developmental Disabilities
The Especially Everyone Experience — inclusive concert and dance events put on at various locations round New York and southern Connecticut — recently created one for its upcoming May 4th event at the Shames JCC in Tarrytown, N.Y. It’s a great example of how social stories can make participants feel comfortable before they even step into an event space.
Each Especially Everyone show consists of a rollicking 10-piece band, offers a designated sensory break area and provides hearing protection, such as earmuffs and earplugs. To learn more, check out Meet ‘Especially Everyone,’ an Inclusive Musical Experience.
Study strengthens links between maternal diabetes and autism, a new diaper for kids with complex needs, RFK Jr. doubles down on bad science, and more developmental disability news for week ending April 11, 2025.
CDC faces backlash for cutting sickle cell, adult disability programs (CBS News)
Layoffs at the Centers for Disease Control and Prevention (CDC) are a good example of how the Trump administration could care less, perhaps pointedly so, about people with disabilities.
Nearly half of its staff working on developmental disabilities and birth defects was laid off this month, reports CBS News, with the layoffs wiping out the entire leadership team atop CDC’s National Center on Birth Defects and Developmental Disabilities.
“Support staff for the center, as well as its Disability and Health Promotion Branch, were also cut,” it reports. That branch had been responsible for a federal database tracking state-level rates of adults with disabilities. “Researchers and health authorities rely on the data to target resources where they’re needed most, and to study patterns and trends in disabilities. A now-stalled upcoming release of data had been expected to help shed light on a recent increase in cognitive disability among younger adults.”
New York Warns Trump It Will Not Comply With Public School D.E.I. Order It’s among other Democratic-led states rejecting the order. (Update: The deadline has been extended to at least April 24, 2025.) (New York Times)
District attorneys are fourth wheel in state budget throuple They’re “heavily involved” in the discussions over changes to the discovery law that are holding up the budget. (City & State)
Commentary: Children with developmental delays aren’t getting the services they need New York ranks 50th for timely delivery of early intervention services. (Times Union)
‘Sadistic and disturbing’. Attorney says 5 families claim former West Hempstead special education teacher abused their kids (News 12 Long Island)
N.J. school may fire 5 employees accused of restraining student with tape (NJ.com)
‘Why am I so bad?’ Indiana schools suspend tens of thousands of students with disabilities Special ed students were suspended more than twice as often compared to their peers. (WFYI)
Police shoot knife-wielding autistic teen behind fence in Idaho, sparking outrage (Washington Post)
Republican plan in Arizona to prevent disability services shutdown comes with tough cuts The Division of Developmental Disabilities is expected to run out of money end of April. (AZ Mirror)
Disability advocates in Maryland ‘betrayed’ by last-minute budget cut for service-provider raises Advocates were thisclose to clawing back more than $300 million from the cuts proposed in governor’s fiscal 2026 budget. (Maryland Matters)
Inside Nova Scotia’s bold plan to end disability institutions It’s one of the last Canadian provinces where it’s common for people with disabilities to be housed in institutions. (Broadview)
RFJ Jr. Says HSS Wil Determine the Cause of Autism by September (AP)
Study strengthens link between maternal diabetes and autism (Reuters)
A fifth of Americans are on Medicaid. Some of them have no idea. Programs with consumer-friendly names and private insurance company involvement add to the confusion. (Stateline)
‘Really scared’: Parents of kids with disabilities confront Education Department chaos (New Hampshire Bulletin)
Ikea just designed its new bathroom products to make life easier for everyone (Fast Company)
Why This Dad’s Diaper Brand Is a Game-Changer for Kids with Disabilities Youth Crews wants to bridge the gap between baby and adult sizes. (Parents)
Tanner Smith Meeting Jack Black Best Thing From Minecraft Press Tour Smith, who’s on Love on the Spectrum, met his hero on The Kelly Clarkson Show. (Vulture)
CDC faces backlash for cutting sickle cell, adult disability programs (CBS News)
New York Warns Trump It Will Not Comply With Public School D.E.I. Order (New York Times)
District attorneys are fourth wheel in state budget throuple (City & State)
‘Sadistic and disturbing’. Attorney says 5 families claim former West Hempstead special education teacher abused their kids (News 12 Long Island)
N.J. school may fire 5 employees accused of restraining student with tape (NJ.com)
Police shoot knife-wielding autistic teen behind fence in Idaho, sparking outrage (Washington Post)
Republican plan in Arizona to prevent disability services shutdown comes with tough cuts (AZ Mirror)
Disability advocates in Maryland ‘betrayed’ by last-minute budget cut for service-provider raises (Maryland Matters)
Inside Nova Scotia’s bold plan to end disability institutions (Broadview)
RFJ Jr. Says HSS Wil Determine the Cause of Autism by September (AP)
Study strengthens link between maternal diabetes and autism (Reuters)
Ikea just designed its new bathroom products to make life easier for everyone (Fast Company)
Why This Dad’s Diaper Brand Is a Game-Changer for Kids with Disabilities (Parents)
Tanner Smith Meeting Jack Black Best Thing From Minecraft Press Tour (Vulture)
As many New York families with a loved one with intellectual and developmental disabilities know, when problems arise, it doesn’t always feel as if justice has been served. Now, you can address concerns, Justice Center-related challenges and more by filling out this survey from the Cerebral Palsy Association of NYS (CP State) on 2024 Justice Center activities.
The Family and Individual Survey focuses on individuals supported and/or their families and caregivers. The results of the survey — along with a survey for Executive Directors/Compliance leadership — will inform recommendations made to the Justice Center to improve its policies and practices.
CP State is hoping for a wide range of responses and hopes that families and providers can share the link with individuals/families/caregivers. Questions about the survey can be directed to Karly Smelson, executive vp, CP State, at ksmelson@cpstate.org.
The New York State Justice Center for the Protection of People with Special Needs (Justice Center), established in 2013 by the Protection of People with Special Needs Act, aims to “restore public trust” in institutions and individuals charged with caring for vulnerable populations. Below, some bullet points taken from the Justice Center website.