First posted Feb. 13, 2025
The intellectual and developmental disability (I/DD) community, already in crisis, is in free fall.
Chronic staffing and housing shortages, gruelingly long wait lists for services, underpaid caregivers leaving their jobs — this was the reality before the new federal administration stepped in intent on gutting safety nets. At the tip of the cost-cutting iceberg is Medicaid and a host of federal grants, plus the administration reportedly is eyeing Section 504 of the Rehabilitation Act, which prohibits programs that receive federal funding to discriminate against people with disabilities.
Their future is more uncertain than ever.
Enter Sen. Patricia Fahy, the new chair of the New York State Senate’s Disabilities Committee. She and the other members are facing a battle for dollars greatly exacerbated by the potential gutting of Medicaid and other federal programs.
“If we lose Medicaid funding we are in epic levels of crisis,” Fahy tells The Boost.
Prior to her election to the State Senate in 2024, Fahy was a New York State Assemblymember, elected in 2012. Her bio calls her a “leading advocate for job creation, environmental conservation, and quality education,” and notes that she has been the prime sponsor of over 200 bills since her election to the State Legislature, more than 75 of which have been signed into law.
The Senator, who freely admits she’s on a learning curve when it comes to disability issues, seems determined to ask the hard questions and to get answers. She spoke with The Boost about the uphill battle for a 7.8% COLA for Direct Support Professionals (DSPs), one of her priorities; dryly noted that calling the Consumer Directed Personal Assistance Program transition a mess was an “understatement”; and says she’ll do “whatever it takes” to get people with disabilities employed. (You’ll find her priorities here.)
I hope you enjoy the interview, which has been edited for length and clarity. — Roberta Bernstein, Editor, The Boost
THE BOOST: I watched a good chunk of the Joint Legislative Public Hearing on Mental Hygiene [held Feb. 5, shortly before this interview]. It was good to see you drill down into the issues affecting the developmental disability community. There’s a lot going on. My first question is an easy one: Are you ready for a vacation?
SEN. PATRICIA FAHY [Laughs]: It’s my 13th budget and I have to keep reminding myself that it’s February, which to me is the hardest month. But the only way I really learn is by listening to the advocates.
Have you had any prior experience with this community?
I come from a very large extended family and my cousin’s son, who was born a day after my daughter, Eileen, has Down syndrome. But my son is probably where I learned the most. [Fahy’s son, Brendan Fahy Bequette, died at the age of 24 in 2022 of a rare cancer.] He fought cancer for 20 months and seeing a healthy son skinny in a wheelchair is pretty humbling. [Tears up] It’s brutal.
But I like to look at the glass as half full. We’ve come far on so many issues. I remember back to when a friend was very emotional because her brother [with developmental disabilities] was institutionalized whereas today he would not have been.
That’s a good jumping off point because the institutionalization of people with I/DD is on people’s minds again. Group homes are closing, there’s a critical housing shortage, DSPs don’t make a living wage and are leaving the sector in droves. Your list of priorities includes a 7.8% COLA for DSPs. Governor Hochul doesn’t seem interested in that number. Do you have allies on the committee who will fight for this? What are next steps?
I’m going to be fair here. The governor takes the heat, but I think we all need to own this. She has to hold the line on a budget that’s very difficult. And members are asking for fifty other things, too.
This is an annual fight. Pay has not kept up. We all need to keep prioritizing getting pay parity, none of it is getting easier, the 7.8% is not going to be easy. I do want to know how much of that $850M is going directly to the DSPs. [OPWDD recently announced the release of updated reimbursement rates for licensed non-profit residential and day service providers, a process known as rate rebasing, plus more than $400M in “new resources” for providers. At the hearing, OPWDD Acting Commissioner Willow Baer assured Fahy that she’s heard from some providers that they’re increasing wages and, in response, the Senator asked for a list of which ones.]
We all need to advocate here, and provider agencies have gotten so much better organized and disciplined about organizing on pay issues. But it comes down to the cost.
That doesn’t leave me feeling very positive about DSPs getting a living wage.
I’m sorry, I’m blunt as they come.
But what are the next steps to help get that needed pay boost?
Make no mistake, providers have become a force. And we’ll continue to advocate.
That 7.8% represents a huge number in a budget, and we’re looking at a president [Donald Trump] who may eliminate the Department of Education, which could [gut assistance] for all kinds of disabilities-related education, among other things.
Right, it’s not exactly a healthy environment. And hanging over all of this is Medicaid on the chopping block.
If we lose Medicaid funding we are in an epic level of crisis. I want to be optimistic that there’s a lot of support [for the 7.8% COLA]. Have we ever achieved the number advocates have asked for? I don’t think so. Have we made inroads in the last few years? Yes. We have a decent recent track record for the COLA, 4% I think in 2023-24, 2.8% for 2024-25, it’s just never been 7.8%
Those last two percentages didn’t keep up with inflation.
No, of course not.
So let’s talk about your priority to create a Human Services Wage Commission and how this ties in.
It’s a bill that I’ve inherited [Senate Bill S4675]. My understanding is — and I still have a lot of work to do here — is that it’s a step back so we can say, “This is what’s needed.” And at times, and not always, these wage commissions have helped us to get the DOL [Department of Labor] to literally put in black and white “this is the history,” “this is where we’re at,” “this is the disparity.”
I’d like to switch over to Self Direction. At the joint hearing on Feb. 5, OPWDD Acting Commissioner Baer noted that there’s a consultant [Guidehouse] working with the agency to look at the model to possibly redefine it. Some families are concerned because a similar thing happened to the Consumer Directed Personal Assistance Program [CDPAP]. First, OPWDD contracted with Guidehouse and then it turned CDPAP upside down. I’m not saying there weren’t problems with the way CDPAP was being administered but, among other issues, the rollout has been a mess.
Understatement. Go ahead.
One issue that gets a little less coverage is that the Fiscal Intermediaries people work with, both in CDPAP and Self Direction, become a part of their care teams. When the system becomes impersonal you lose that essential support. They’re skilled professionals who have been doing this for a long time, and who have their own connections and supports. Any sense of where things are going for Self Direction?
I’ll put it on my radar screen. It’s interesting that there looks like there’s a parallel here. I definitely want to educate myself on Self Direction and I welcome hearing more about it.
As for CDPAP, we were briefed by PPL [LLC, the company that won the contract to administer the program] around the holidays and we heard some of the good things. We all recognized this program was in trouble and that it had exponential growth, and that many of those fiscal intermediaries were making a lot of money. So, there were a number of bad apples there that I’m afraid helped poison the whole program.
There was no argument [from most members] on the need to get this under control. But we thought right up until the last second that there were going to be regional intermediaries. It was a bit of a shock to a number of us that that there was one fiscal intermediary.
Do I think we have the perfect model? No one’s going to say that. Do I think we may see more changes? It’s a mess. Generally, I don’t want to start over. I’m being blunt. We’re not going back to 600 intermediaries. If there’s a delay it doesn’t mean there’s going to be a massive change, but a lot of people don’t have a huge appetite for a big fight.
There may be some attempts to loosen some of this up. The Health chair in the Senate does have a bill to propose some delays as well as some changes. [Sen. Gustavo Rivera, Senate Bill 1189, a modified version of the bill he introduced in 2024.] The Governor’s office is going to hold pretty firm right now. Politically, this is not earning her any warm and fuzzies.
Let’s talk about another one of your priorities, which is an increase to the Workers with Disabilities Tax Credit from $2,100 to $5,000, as well as adjusting application processes to expand the number of businesses hiring employees with disabilities.
I know there’s a mixed review on tax credit programs around the country. I’m a huge believer of the EITC [earned income tax credit] and am dusting off my efforts. [Several days after our interview, the Senator announced a proposal seeking to increase the credit’s value and broaden eligibility.] I want to do whatever it takes to get people employed. I’m well aware of employment rates and how difficult it is for people with disabilities to get jobs.
Last year, the U.S. Dept. of Labor proposed a rule to phase out certificates allowing payment of less than minimum wage to workers with disabilities, and there’s been a push to end the subminimum wage in New York. Have you had a chance to look at the issue?
I understand there has been a serious movement away from it and I’m supportive. I met with a few disability groups who want me to sign a bill to eliminate it and I said right now I can’t co-sponsor a bill until we have a commitment that those folks making subminimum wage at a job will have a job tomorrow.
I just want to end by noting something I’ve heard anecdotally, which is that some legislators have asked advocates and providers, to paraphrase, “Why should I listen to you? This population has no voting power.” How do you get people to support a community perceived as not having a lot of fire power?
Right. It’s why seniors generally get more in a budget then children — because seniors vote and children don’t.
I’m not here to make money. I’m here to get things done. It’s important, and why? It’s our humanity. But it’s not only the right thing to do, it’s also good for the economy.
Photo: Sen. Patricia Fahy being sworn in. (Credit: Courtesy of office of Sen. Patricia Fahy)
A guide to what the U.S. Education Department does (and doesn’t) do (NPR)
What the Assault on Public Education Means for Kids with Disabilities (The New Yorker)
“Is My Child’s IEP in Danger?” (additudemag.com)
Linda McMahon agrees with Trump’s calls to gut the Education Department. She still wants to lead it. (Chalkbeat.org)
Opinion: The Risks Trump Poses to K-12 Education (New York Times)
Push To Dismantle Ed Department Fuels Worries About Special Education (Disability Scoop)
Sen. Gillibrand: If Trump defunds Dept. of Ed, N.Y. students with disabilities will lose support (silive.com)
Changing the conversation: Disability pride clubs foster inclusion at Stuyvesant and beyond(Chalkbeat.org)
Gov. Hochul’s administration seeks investigation of $10M ad blitz against her (Gothamist.com)
‘April 1 does not work’: N.Y. lawmakers want more time for Medicaid home care change (nystateofpolitics.com)
17 States Sue To End Protections For Students With Special Needs (Forbes.com)
U.S. Department of Ed Finds MA Failing To Protect Disabled Students (Patch.com)
What does NAEP show for special education students? (k12dive.com)
5 Key Facts about Medicaid Coverage for People with Disabilities (KFF.org)
Why many Republicans think shrinking Medicaid will make it better (NPR)
Trump’s War on Medicaid Will Institutionalize Millions of People (Mother Jones)
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., Feb. 15, 2025: Sensory-friendly screening of Paddington in Peru: At Jacob Burns Film Center in Pleasantville.
Fri., Feb. 21, 2025: Rom-Com Movie Night: In Nyack, N.Y. For youth with disabilities ages 14-24. To register, contact Emily Rocks at erocks@bridgesrc.org, 845-624-1366 ext. 107. (Bridges)
Sat., March 1, 2025: 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)
Fri., March 7, 2025: Ribbon-Cutting Ceremony for Pound Ridge Library Sensory Room & Book Reading: Join this library in Westchester County as it opens its new Sensory Room and the newly refurbished Children’s Room. Featuring a special story time highligting the library’s commitment to inclusion and accessibility.
Thurs., April 3 – Wed., April 9, 2025: 17th Annual ReelAbilities Film Festival New York: Info to come.
Year-Round:
We Rock the Spectrum Kid’s Gym: There are two New York We Rock the Spectrum franchises, one in New Rochelle (Westchester County), the other Staten Island, with locations in Brooklyn and Long Island in the works.
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 credit: Pexels.com
What’s at risk should the Department of Education be gutted, why Republicans want to shrink Medicaid, Getty Images aims to boost disability representation and more developmental disability news for the week ending Feb. 14, 2025.
With the existence of the Dept. of Education up in the air (I can’t believe I’m even writing this), these articles might be of help.
A guide to what the U.S. Education Department does (and doesn’t) do (NPR)
What the Assault on Public Education Means for Kids with Disabilities (The New Yorker)
“Is My Child’s IEP in Danger?” What you need to know about IEP law and 504 Plan protections. (additudemag.com)
Linda McMahon agrees with Trump’s calls to gut the Education Department. She still wants to lead it. (Chalkbeat.org)
Department of Education Halts Thousands of Civil Rights Investigations Under Trump More than 10,000 student complaints related to disability access and sexual and racial harassment are on hold. (ProPublica)
Opinion: The Risks Trump Poses to K-12 Education “I have noticed that prominent supporters of President Trump have recently made disturbing statements about children with learning disabilities.” (New York Times)
Push To Dismantle Ed Department Fuels Worries About Special Education (Disability Scoop)
Sen. Gillibrand: If Trump defunds Dept. of Ed, N.Y. students with disabilities will lose support (silive.com)
Changing the conversation: Disability pride clubs foster inclusion at Stuyvesant and beyond(Chalkbeat.org)
Family alleges Queens day care tried to cover up abuse of their nonverbal son with autism (abc7ny.com)
Gov. Hochul’s administration seeks investigation of $10M ad blitz against her The formal inquiry into the Alliance to Protect Home Care and two other nonprofits accusing the governor of “gutting” the Consumer Directed Personal Assistance Program (CDPAP) is the governor’s biggest pushback yet. (Gothamist.com)
Another take: State Urges Investigation Into Opponents of Hochul Home Care Plan Following New York Focus Reporting (NYfocus.com)
‘April 1 does not work’: N.Y. lawmakers want more time for Medicaid home care change Several lawmakers said Tuesday the state will need more time for the CDPAP transition. The State Health Department Commissioner James McDonald and state Medicaid Director Amir Bassiri “remained firm that the department would proceed with the current timeline, but would not rule out a delay.” (nystateofpolitics.com)
State lawmakers urge delay in overhaul of NY home health aide program This take on the above news reports that McDonald said there was no need to diverge from the current plan because everything is going smoothly. (Gothamist.com)
17 States Sue To End Protections For Students With Special Needs They’re going after Section 504, which codified the civil rights of persons with disabilities. (Forbes.com)
Controversial N.J. dog trainer bitten by the state. Her nonprofit was shut down over ‘mind-boggling’ expenses. Merlin’s Kids promised to provide service dogs for children and veterans. (nj.com)
U.S. Department of Ed Finds MA Failing To Protect Disabled Students (Patch.com)
Food truck in Texas gives students with disabilities chance to showcase job skills I love seeing employment opportunities beyond coffee houses and bakeries. Plus, see candy shop job, below! (kcbd.com)
Candy shop in Massachusetts gives those with disabilities chance to make an impact (CBSnews.com)
What does NAEP show for special education students? Math and reading scores declined or held steady for special education students on the 2024 National Assessment of Educational Progress. (k12dive.com)
Remote work was a boon for people with disabilities. What happens as employers pull back? (USAtoday.com)
5 Key Facts about Medicaid Coverage for People with Disabilities The options under consideration to cut Medicaid spending by $2.3 trillion over 10 years. (KFF.org)
Why many Republicans think shrinking Medicaid will make it better (NPR)
Republicans Face Pushback on Potential Medicaid Overhaul (Governing.com)
Trump’s War on Medicaid Will Institutionalize Millions of People With potential cuts to Medicaid a priority for the Trump administration, the future of HCBS remains in limbo. (Mother Jones)
Getty Images Offers $20,000 to Capture Better Photos of People With Disabilities Getty is where many news sites and online magazines get their photos, so kudos to any program that aims to increase representation of the disabled in the media. (petapixel.com)
Jon Stewart To Host New York’s ‘Night Of Too Many Stars’ Autism Benefit (Deadline.com)
Dating, love, infatuation, sex, marriage — these can be complicated topics for parents with adolescent, teen, or young adult children with intellectual and developmental disabilities (I/DD). To complicate matters for parents, public schools don’t address the need to teach students with disabilities about sexual and reproductive health. In fact, only a handful of states, and New York is not among them, are required to teach sex ed to students with an IEP.
In part, ableist tropes about sex and relationships can prevent people with I/DD from being seen as sexual beings. Too often they’re “unable to pursue sexual relationships, mainly because stereotypes deem them asexual or too deviant,” according to the nonprofit agency YAI, which has a good introductory article on the topic, Recognizing the Sexual Rights of People with I/DD.
RELATED NEWS: Planned Parenthood’s Project SHINE Launches Sexual Health Toolkit for Youth with I/DD
Discussions on sexual health and relationships are not only the right thing to do, it can help keep your loved ones safe. A host of studies have found that a disproportionate percentage of people with disabilities of all ages face an increased risk of sexual violence.
“People with I/DD are more susceptible to sexual violence for various reasons,” according to the Administration for Community Living. “They are often more physically and financially dependent on others and more likely to be socially isolated, which increases risk.”
Health reasons, of course, are another reason it’s important to be educated on sexually transmitted diseases. Additionally, women with disabilities are less likely than their peers to receive appropriate breast and cervical cancer screenings.
Consent and agency are two other topics of critical importance to people with I/DD. You should find ways to discuss these topics (see resources below). And, FYI, certified residential settings often have specific regulations in this regard.
In New York, for instance, an Administrative Memorandum (ADM) in 2023 from the Office for People with Developmental Disabilities (OPWDD), lays out the guidelines. It affirms that individuals with I/DD “have rights regarding sexual expression and sexual activity and to ensure that these rights are not unnecessarily denied,” and also outlines the procedures used for determining or assessing an individual’s capacity to make an informed choice regarding sexual activity if concerns are raised,
To help you hack a path through the thicket, The Boost has pulled pulled together some helpful guides:
The National Council on Independent Living (NCIL)’s project to help people with I/DD learn about sex is a 10-video series (to be seen in any order) that discusses, among other things, what sex is; what gender is; what a healthy relationship looks like; how someone can get pregnant; and how to protect yourself against sexually transmitted diseases and infections.
Access, Autonomy, and Dignity: Comprehensive Sexuality Education for People with Disabilities
The Kennedy Krieger Institute in Baltimore offers a guide with links to sexual health and IDD resources. The list is vast, and ranges from age-appropriate animated videos for adolescents ages 10 to 14 via amaze.org; and a guide, via the University of California, San Francisco, “Our Sexuality, Our Health: A Disabled Advocate’s Guide to Relationships, Romance, Sexuality and Sexual Health.”
Sexual Health Toolkit for Parents of Youth with IDD from the U.S. Dept. of Health and Human Services
Center for Parent Information & Resources’ Sexuality Education for Students with Disabilities
Oregon Health & Science University‘s “Sexual Health Equity for Individuals with Intellectual and Developmental Disabilities (SHEIDD)” offers great resources for holistic sexual health education.
(Note: The Boost has no particular expertise on sexual health and people with intellectual and developmental disabilities, and welcomes comments and additional information.)
Photo credit: Unsplash.com
Wed., Feb. 19, 2025: Level Up Your Advocacy: Creative Strategies for Disability Voting Rights Week: This year’s Disability Voting Rights Week (DVRW) will take place September 8-12. This interactive workshop will explore “the power of creative activism” to advance your actions during Disability Voting Rights Week. (REV UP)
Wed., Feb. 19, 2025: Disability Conversations: “Hear Our Voices” Self Advocacy Group Meeting: The Hear Our Voices self-advocacy meetings meet monthly on a Wednesday and are open to anyone in New York State with a developmental disability regardless of having attended prior meetings. (CSN at Westchester Institute for Human Development)
Wed., Feb. 19, 2025: Preparing for Living in the Community Using Self-Direction Budget: Registration opens Feb. 3. (SOYAN)
Thurs., Feb. 20 ,2025: An Overview of Wheelchair Repair and Proposals in the New York State Budget: A brief overview of the issues facing consumers using manual wheelchairs and powerchairs while sharing how you can take action to support advocacy efforts. (New York Association on Independent Living)
Tues., Feb. 25, 2025: Learn all About Abilibee, an App to Help You Navigate Your Developmental Disability Journey From Early Intervention to Adulthood. (Abilibee and New York Alliance for Developmental Disabilities)
Tues., Feb. 25, 2025: Explicit Vocabulary Instruction for Parents: The presentation will discuss fostering vocabulary development at home. Participants will be able to explain the importance of vocabulary instruction for their children in the elementary grades and describe ways to incorporate instruction in the home. (FACE and NYSED OSE Partnership)
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.
Wed., Feb. 26, 2025: Student Involvement in the Individualized Education Program (IEP) for Families: This training is intended to promote and encourage student and family involvement in the Individualized Education Program (IEP) development process and Committee on Special Education (CSE) meetings. (FACE and NYSED OSE Partnership)
Wed., Feb. 26, 2025, or Friday, Feb. 28, 2025 : Diploma and Credential Options for Students with Disabilities: Participants will learn about self-determination skills and its relation to students determining an individualized pathway to graduation from multiple options. Credit and diploma requirements, the appeal eligibility criteria for all students, and safety-net options for students with disabilities will be reviewed. (FACE, NYSED OSE Partnership, LHRPC and Mount Vernon City School District)
Mon., March, 3, 2025- Thurs., March 6, 2025: Employment and You! Resources and Strategies for Success: Hear from statewide experts on employment resources for people with disabilities including contacts and methods that can support and keeping a job. (Univ. of Rochester Medical Center and WIHD)
Tues., March 4, 2025: NYC FAIR’s Virtual Town Hall: What’s in the State budget? What’s not? Find out here. You can submit questions prior to the event.
Tues., March 4, 2025: EI (Early Intervention) to CPSE (Committee on Preschool Special Education) 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 and. NYSED OSE Partnership)
Sat., March 8, 2025: GiGi’s Educator Symposium: Join a team of experienced educators and therapists from across the GiGi’s Playhouse Network to learn how to teach individuals with Down syndrome the way they learn best.
Sat., April 5, 2025: Youth Abilities Fair: A Special Needs Resource Fair: Suffolk County. Includes a sensory room and magic show. Address: Middle Country Public Libraries, Eastwood Blvd., Centereach, N.Y. Time: 11 a.m. to 1 p.m. (In partnership with Middle Country SEPTA)
Ongoing: Brain Injury Association of NYS Support Groups: A variety of times for survivors and caregivers.