While The Boost’s posted events don’t usually wander past the Lower Hudson Valley, I’m always up to share something from New York Sen. John Mannion, chairman of the Committee on Disabilities, who is, as expected by his position, a wonderful advocate for the developmental disability community.
He’s now behind an upstate disability fair, which he says will bring together “some of the region’s best services and resources for individuals with disabilities and their families.”
The free event will include a variety of vendors, and you’ll be able to visit their booths to learn about their services and supports.
Details
When: Thursday, April 18, 2024
Time: 11 a.m. to 1 p.m.
Where: DeWitt Community Room, 148 Sanders Creek Pkwy., East Syracuse, N.Y., 13057
No need to register. Questions? Call 315-428-7632.
When musician Pete Kozak, who has worked in the world of developmental disabilities for 15 years, invited a music-loving client to hear his band play, he was surprised by the young man’s reaction: He didn’t want to go.
“And then I realized nothing about it would accommodate him,” Kozak says. “Concerts are played at night, in dark light and in crowds.”
It was a lesson that simmered and then turned into a solid idea: Especially Everyone (EE), a non-profit organization based in Greenwich, Conn., that produces inclusive interactive concerts for people of all abilities.
The star of the shows, which are called The Especially Everyone Experience, is a 10-piece band that plays a mix of original and cover songs, and invites the audience to sing, dance and play along during each performance. (Kozak is on vocals and percussion.) Each show has a designated sensory break area, the noise level is kept at a moderate volume and hearing protection, such as earmuffs and earplugs, are provided. There are also sound stations where participants can try out instruments before the show and during breaks.
The Boost spoke with Kozak, EE founder and director, as well as a behavioral therapist, about how it all started and where things are going.
Were there any other incidents that inspired you to switch gears and form EE?
Actually, yes, my very first client. He was a 65-year-old man with developmental disabilities and I took him to an activity that turned out to be a game of duck, duck goose. Everyone there meant well, but it was clear to me that it wasn’t appropriate for him. So many adults with disabilities find themselves doing things meant for little kids.
Yes — there aren’t enough activities that give adults a sense of being, well, adults. How did things get off the ground?
I’ve played music my whole life and grew up playing in bands, including a wedding band. Back in about 2018 my friends and I repurposed the wedding band to throw a Sunday afternoon concert to address the sensory issues [that stopped my client from going to my concert].
We started out doing them quarterly and then COVID hit and things came to a stop. During that time I started writing some original music with one of my partners, Jon Schmarak, who’s in a masters program for music therapy.
After COVID, the project turned into an original band with a musical therapy spin. In 2022 we had a soft relaunch and then developed the material into a full show, The Especially Everyone Experience, which debuted in October 2023.
Any plans for expansion?
Well, we also have a vocational side. We partner with vocational programs and run opportunities within the productions for people [with developmental disabilities] to work. So, we have a greeter, and have people working on our next event as production assistants.
We’re also going to be stepping into the educational and lesson space.
Do you charge for the shows?
It depends on the venue. This weekend we’re playing in Nyack [April 7 at the Nyack Center] and I rented the venue so we have full control and are just asking for a suggested donation. Other venues it’s not as easy for us to do that. We’re trying to be creative to keep costs down so anyone can come. There’s a void and we’re hoping to fill it!
This guest post was written by Chris Palega, family caregiver, NYADD regional lead – Finger Lakes
The Family Support Services (FSS) program is rooted in a small pilot project, started in 1984 by the Office for People with Developmental Disabilities (OPWDD), that assisted 200 families who were supporting loved ones with developmental disabilities at home.
As the program grew across the state, OPWDD, working in partnership with families and non-profit provider agencies, developed and delivered person-centered, family-driven supports and services designed to help meet their unique and, at times, overwhelming challenges.
Today, FSS provides a broad spectrum of supports and services including advocacy, help for families with high and complex needs, respite and transportation. FSS’s most popular program, Family Reimbursement, covers the cost of goods and services families need to help keep them intact and fully functional. These programs are tasked with meeting a number of goals including maintaining family unity and maximizing the potential of a family member with a developmental disability.
In July 2022, OPWDD implemented changes to Family Reimbursement policies via Administrative Directive Memorandum (ADM #2022-02R). Unfortunately, these changes have undermined the program’s ability to support families, causing them to suffer needlessly. Some Family Reimbursement programs across the state have even closed under the additional administrative burdens of this ADM. Families are losing hope.
It’s important to know that FSS was established legislatively via Mental Hygiene Law § 41.43 and supported by Chapter 552 of the Laws of 1992. In just a few brief paragraphs, these statutes speak with clarity and conviction about the importance New York State placed on families who care for their loved ones with developmental disabilities at home.
But despite legislative intent that “family support services should be family-driven,” families were not engaged to drive these policy changes. And despite legislative intent that family supports be “goods, services, and subsidies, determined by the family,” OPWDD compiled and issued a non-allowable list of goods and services without allowing families to determine anything.
Over the past two years, families, providers and others have poignantly and repeatedly raised their voices to deride these policy changes. In March 2023, a research report by the Statewide FSS Committee provided data and stakeholder engagement on the negative impact these policy changes were having on OPWDD’s ability to meet the goals set forth for FSS.
More recently, Sen. John W. Mannion, chair of the Senate Committee on Disabilities, and Assembly Member Rebecca A. Seawright, chair of the Assembly People with Disabilities Committee, both sent letters to OPWDD Commissioner Kerri Neifeld stating their unequivocal opposition to these policy changes.
Despite all of this and repeated assurances from OPWDD that these policies are open to change, they remain an inflexible foil to the agile, person-centered, family driven program that FSS Family Reimbursement once was.
In an effort to relieve the additional burdens this ADM has placed on families, the New York Alliance for Developmental Disabilities (NYADD) is advocating for:
We are firm in our belief that family caregivers reduce the demand on an overwhelmed system of more costly and more restrictive residential placements. Likewise, these families greatly reduce the demand on a paid Direct Support Professionals (DSP) workforce that’s already in crisis.
NYADD, along with many in our community, believe that properly targeted investment in family caregivers is not only the right thing to do, but is among the most responsible and effective investments that can be made as we work to ensure the success of both OPWDD and the people it’s committed to serving.
NYS Assembly Member Rebecca Seawright comes out swinging for DSPs, a study finds that autism in young girls is often misdiagnosed or overlooked, and more developmental disability news for the week ending April 6, 2024.
Well, I found my weekend read! The Hechinger Report just published a year-long investigation on suspensions and expulsions given for “vague, subjective categories like defiance, disruption and disorderly conduct.” It’s a topic of great importance to those in special education as students with disabilities, especially Black students with disabilities, are more likely than their peers to be disciplined.
The articles, found here, include a detailed main report, Vague school rules at the root of millions of student suspensions and a dive into issues including racial disparity.
Op-Ed | Don’t leave our most vulnerable New Yorkers behind in budget negotiations NYS Assembly Member Rebecca Seawright on why a 3.2% COLA for DSPs must be in the new budget. (amnewyork.com)
Lawsuit seeking makeup services for NYC students with disabilities survives another legal challenge The lawsuit, filed in 2020, argued that thousands missed out on key services after a switch to virtual instruction. (Chalkbeat.org)
New center aims to help people with an intellectual disability get college degrees in Minnesota A growing number of states have invested in inclusive higher education in the last decade. Kentucky passed legislation in 2020 establishing a similar center to Minnesota’s at the University of Kentucky. There are now over 300 postsecondary programs for students with an intellectual disability nationwide. (MPRnews.com)
Fully-Accessible Theme Park Reopens in Texas Following Major Expansion Morgan’s Wonderland in San Antonio had a $6.5 million overhaul, such as a “first-of-its-kind” 4-seat zip line that can accommodate riders in wheelchairs as well as those who need extra restraints. (Disability Scoop)
Disability rights advocates call on Portland, Ore., Schools to spare special ed jobs in budget cuts The layoffs would affect students with disabilities. (Oregon Capital Chronicle)
Teaching disability history in schools is ‘long overdue,’ advocates say “You can’t find a period in history or a place in geography or time where there aren’t people with disabilities. And yet somehow, we’ve barely scratched the surface of that history.” While a handful of states, says the report, including New Jersey, have laws on the books about including disability history in their curriculum standards, but “those standards aren’t always enforced.” (wgbh.org)
Biden Administration Reducing Penalties In Supplemental Security Income Program Disability benefits for people whose friends, family or roommates help them out with food will no longer be docked. (Huffpost.com)
Nonspeaking People With Autism May Know More Than Previously Thought A study finds that five times more nonspeaking teens and adults with autism have knowledge of written language than was expected. (Disability Scoop)
Autism in young girls is often misdiagnosed or overlooked. A doctor explains why. “We see higher rates of diagnoses of anxiety or depression and the autism really gets missed.” (CBSnews.com)
US Dept. of Labor to award up to $67.1M to help people with disabilities overcome obstacles to employment Among the first states receiving the awards is New York. (U.S. Dept. of Labor)
School-based Medicaid billing concerns delay proposed rule Concerns over negative impacts to students’ out-of-school benefits are delaying the release of a rule that would ease the process of obtaining parental consent for Medicare school-based health services. (K12dive.com)
Parents offered class photo with no ‘complex needs’ pupils Parents at a school in Scotland were offered a choice of class photos with or without children with complex needs in them. (BBC) An opinion piece in The Guardian, Cropped out, banned, airbrushed: the school photos that show the ugly face of Britain today, offers a thoughtful take on the news.
Movement and musical discovery are the focus in this series for children ages 2-6 and their caregivers. It features “world-class” artists who will invite children to sing, wiggle, and dance to diverse styles of music.
The performances welcome children who are neurodivergent, have sensory sensitivities, or just need a bit more space to enjoy the music. Modifications include relaxed house rules and extra space for movement.
Details
Schedule:
Time: 11 a.m.
Where: Caramoor Education Center, 149 Girdle Rd., Katonah, N.Y., 10536
Tickets: You’ll find ticket links here.
Image: Freepix
Join Shames JCC on the Hudson for an inclusive introduction class to gardening basics led by resident JCC gardener Amy Payne. Learn about seasonal plants, practice preparing a garden bed and help plant in the JCC garden for the upcoming season.
Details
When: Thursdays, April 11, April 25, May 16, May 30 (total of four classes)
Time: 10:30 a.m. to 11:30 a.m.
Where: Shames JCC, 425 South Broadway, Tarrytown, N.Y., 10591
Cost: $80 members/ $100 non-members
Questions? Contact Annie Bridson at abridson@shamesjcc.org, (314) 966-7898
Part of the Individuals with Disabilities Education Act (IDEA), Least Restrictive Environment (LRE), presumes that “students with disabilities will attend the same schools they would have attended if they did not have disabilities,” according to the NYS Education Dept. “Removal or restriction from their regular schools and classrooms can only occur for reasons related to the student’s disability when the student’s individualized education program (IEP) cannot be satisfactorily implemented in that setting, even with the use of supplementary aids and services.”
This webinar from Parent to Parent of NYS will walk you through the law, and what it means for you and your child.
Details
When: Thursday, April 4, 2024 (there will also be one in July and one in November; see registration to choose)
Time: 10 a.m. to 11:15 a.m.
Photo: RDNE Stock Project
If, like me, you’re unfamiliar with Special Education Quality Assurance (SEQA), this free, interactive workshop will likely be helpful.
Part of the New York State Education Department, SEQA oversees preschool and school-age special ed services through a quality assurance review process that “emphasizes attainment of positive results for student with disabilities,” according to its website. SEQA has regional offices that assist parents and school districts alike.
Beyond providing technical assistance and other help to parents, school district personnel, and private providers, SEQA investigates and resolves State Complaints.
Participants will learn:
The speaker is Kathleen Milliman, chief of Special Education Services – Upstate SEQA, NYSED, and the facilitator is Jean M. Lucasey, Counsel, the Law Office of Elisa Hyman.
Details
When: Wednesday, April 10, 2024
Time: 12 p.m. to 1:30 p.m.
Closed captioning and ASL interpretation are provided.
In unsurprising news, the April 1 deadline for the 2025 New York State budget will be coming and going without a final budget. This means it’s not too late to keep pushing for the legislation needed to support people with intellectual and developmental disabilities, their families and caregivers.
NYC Fair has shared talking points and easy ways to advocate. Most needed: a 3.2% COLA for direct support professionals (DSPs); a $4,000 wage enhancement to DSPs via the Direct Support Wage Enhancement bill; and restoring the drastic cuts Gov. Hochul has proposed to the Consumer Directed Personal Assistant Program (CDPAP).
RELATED NEWS: Why We Need the New York Complex Care Assistant Act
Below are the tips shared by NYC Fair (Family, Advocacy, Information & Resources for People with Intellectual & Developmental Disabilities), as well as other organizations NYC Fair is amplifying.
One-click ways to advocate
https://www.ancor.org/advocac
https://thearcny.org/budget-a
https://nyalliance.org/Advoca
NYDA: New York Disabilities Advocates’ suggests these talking points when reaching out to Senators and Assembly Members.
NYDA has has supplied a call script, found here.
And here is NYC FAIR’s response to the governor’s budget.
States work to eliminate the subminimum wage, “noisy” autistic brains seem better at certain tasks and more developmental disability news for the week ending March 30, 2024.
The Looming Home Care Disaster In New York State More on the proposed budget cuts to the Consumer Directed Personal Assistance Program (CDPAP). (homehealthcarenews.com)
“Hear my daughter’s voice through me”: Disability advocates plea state avoid program cuts This article focuses on the proposed cutting of designated representatives from CDPAP from the budget. (cbs6albany.com)
Katonah-Lewisboro NY schools sue state over extension of special education eligibility age State officials told the district it had to continue educating a 21-year-old student with autism for an additional year, so the school district sued. (a lohud article, as seen on aol.com)
Advocates call foul for Illinois lack of disability funding The governor’s budget proposal doesn’t include a pay increase for the people who care for those with intellectual and developmental disabilities. Sound familiar? (ourquadcities.com)
WA state spending to rise tenfold on housing for people with developmental disabilities The new funding, which will flow through grants to mostly nonprofit developers, will likely help build about 80 affordable housing units. (spokanepublicradio.org)
For patients with disabilities, this doctor prioritizes independence — and fun A family physician and University of California, San Francisco professor has been reshaping care for adults with complex disabilities in the San Francisco Bay Area. (npr.org)
FDA Proposes New Ban On Shock Devices For Those With Developmental Disabilities More than two years after a ban was blocked in court, federal regulators are seeking to stop the use of devices that administer electric shocks to address behavior issues in people with developmental disabilities. (Disability Scoop)
‘Noisy’ autistic brains seem better at certain tasks. Here’s why neuroaffirmative research matters (theconversation.com)
Neurodiverse prison unit protects, teaches inmates with autism Pennsylvania’s Neurodevelopmental Residential Treatment Unit at the State Correctional Institution is one of only a handful around the country. (wbur.org)
The Autism Society’s Capital Connection has a detailed overview of President Biden’ FY25 Budget and the investments important to the developmental disability community.
Disabled workers can be paid less than the minimum wage. Some states want to end that. An excellent overview on the state of the subminimum wage. (stateline.org)
(Also, see: Ohio lawmakers propose bill to eliminate wage cuts for workers with development disabilities, from wltw.com)
Local photographer empowering those who live with disabilities A Cincinnati photographer hosts photo shoots to highlight the bright light within the autism and disabilities community. (wcpo.com)