Shh… They’re Coming, the horror movie from YAI, an organization serving people with intellectual and developmental disabilities, recently premiered at the Bedford Playhouse. It’s now available with one click!
Another reshuffling of administrative staff overseeing special ed in New York City, scientists hypothesize that a neanderthal community cared for a child with Down syndrome, and more news for the week ending June 28, 2024.
NYC schools restructuring: A new deputy chancellor for students with disabilities, English learners (Chalkbeat)
City of Buffalo restructures Advisory Committee for Persons with Disabilities (wgrz.com)
Complaint filed following allegations of disability discrimination in CT school districts (wfsb.com)
After Meeting With Advocates, Pennsylvania State Police Unveils Informational Card For People With Autism (media.pa.gov)
Maryland brothers put a face on autism for police (Washington Post)
Class action complaint accuses Tennessee Department of Children’s Services of abusing disabled kids (Tennessee Lookout)
Baltimore County is aiming to enhance safety for kids with cognitive disabilities. Here’s how. (CBS News)
Fossil Suggests Neanderthals Cared For Child With Down Syndrome (Disability Scoop)
Thousands with disabilities subjected to segregation in these three states (USA Today)
Score one for people with disabilities who use Access-A-Ride Paratransit (AAR) in New York City.
On June 12, 2024, the Supreme Court of the State of New York denied the MTA motion to dismiss a case to end the discrimination that excludes this population from public transit disability and senior fare discounts, including 30- and 7-day unlimited fares.
Currently, AAR riders must pay the full fare of $2.90 for every trip. This is regardless of the number of trips they take per month, and whether or not they qualify for a Reduced-Fare MetroCard because of their disability or age.
“Access-A-Ride Paratransit users require transportation to get to their jobs, to school, medical appointments, social and community events — everything that people with no disabilities use transportation to get to,” says Christopher Schuyler, managing attorney with the Disability Justice Program at New York Lawyers for the Public Interest (NYLPI). NYLPI represented the plaintiffs along with Mobilization for Justice and pro bono counsel Jenner & Block LLP.
“We think it’s really unfair that Access-A-Ride users are not offered the same discounts as people who ride subways and buses,” Schuyler adds.
In the Court’s ruling, the judge agreed with plaintiffs that “based on the allegations in this case, the [American with Disabilities Act] and the DOT implementing regulations do not preempt the New York City Human Rights Law,” according to a press release from NYLPI, Mobilization for Justice and Jenner & Block.
“This is a promising juncture in the case,” Schuyler tells The Boost. “It can now proceed and we can really start to litigate it.”
Paratransit riders face challenges statewide in New York, ranging from unreliable pick-up and drop-off times to high costs — riders in Westchester County pay $5 a ride — and the need to contact Paratransit at least one day in advance (and up to seven).
The day-before-scheduling requirement is also being tackled in New York City. This past April, a federal judge ruled that NYC MTA may be violating New York City Human Rights Law for requiring people with disabilities to book Access-A-Ride trips by 5 p.m. the day before travel.
Photo: Wikimedia Commons
Saturday, June 22 marks the 25th anniversary of one of the most important U.S. Supreme Court decisions for people with disabilities in the U.S.
In 1999, the U.S. Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act. The decision affirmed their right to live and receive services in the least restrictive and most integrated settings possible.
More specifically, the Court held that public entities must provide community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity.
Three women were behind the landmark decision: Lois Curtis, Elaine Wilson and Sue Jamieson.
“Lois and Elaine were people with mental health and developmental disabilities. Since childhood, they had been cycled in and out of institutions, away from their homes, separated from their families and communities,” writes the U.S. Dept. of Labor in its blog. “In the mid 1990s, both found themselves confined to the state-run Georgia Regional Hospital despite desperately wanting—and having been deemed ready by health care professionals—to transition to community-based treatment.
“In May 1995, Sue, an attorney with the Atlanta Legal Aid Society who had known and advocated for Lois since she was a teenager, filed a federal suit on Lois’s behalf. The suit, filed against the State of Georgia, including the commissioner of the Georgia Department of Human Resources, Tommy Olmstead, asserted that Lois’s unjustified segregation constituted discrimination under Title II of the Americans with Disabilities Act. Later that year, as Georgia Regional Hospital prepared to release Elaine to a homeless shelter yet again, her mother called Sue for help. Elaine joined the suit in January 1996.”
Let’s celebrate — and keep fighting to create a fair, equitable and dignified life for those with disabilities. There’s a long way to go.
Image: Wannapik
Anderson Center for Autism’s NYS grant, Maine’s new waiver helps bridge the transition “cliff,” signs of autism in the womb and more developmental disability news for the week ending June 21, 2024.
Lyft Healthcare now approved transportation provider for Medicaid patients (via MAS) Medicaid patients now have access to Lyft rides to and from medical appointments. (Not sure in which newsletter I found this pdf!)
Disabilities Beat Podcast: NYS CDPAP will be run by one business The podcast speaks with a policy expert who was on the ground in Albany during deliberations on the highly controversial decision. (WXXI)
MTA Stations Will Exhibit Student Artwork for Disability Pride Month (Brooklyn Eagle)
Hochul provides funding for specialized autism workforce A $3 million state grant will go to Anderson Center for Autism to rebuild the carriage house that hosts its workforce training. (Spectrum Local News)
Biden-Harris Administration Announces $343 Million to Improve Transportation Accessibility Grant recipients include NYC’s Metropolitan Transportation Authority. (U.S. Dept. of Transportation)
Emergency housing for NJ kids with disabilities so scarce ‘families often just give up’ The program is “woefully underfunded” and labor is scarce. (Northjersey.com)
New NJ student loan redemption program to support home and community-based workers (nj.gov)
CT, Mass, WA Warn Against Sending Children to Shrub Oak Intl. School After an investigative report, these states are warning school districts about the New York boarding school for autistic students. (ProPublica)
Maine’s new waiver to help with post-school ‘cliff’ Its Lifespan Waiver would provide services to people with I/DD at age 14 to help them move into adulthood without losing that care. (newscentermaine.com)
Washington State Schools Missed 8,500 Kids for Special Ed Referrals During COVID The findings mirror other early analyses showing substantial drops in the number of children with disabilities who began receiving crucial support during the pandemic. (the74million.org)
Floridians with disabilities have a new legal pathway to make their own decisions The option for supported-decision making goes into effect July 1. (Florida Phoenix)
DOJ says Utah violates civil rights by ‘segregating’ adults with intellectual disabilities The focus here is on sheltered workshops and “day facilities.” (ksl.com)
New Employment and Disabilities Study This national study found that 42% of the sample was unemployed but wanted a job, while 39% were underemployed and just 21% have competitive integrated employment. (Science Direct)
Residential Treatment Facilities Put Kids With IDD At Risk, Senate Investigators Say The findings focus on four of the nation’s largest providers of residential treatment facilities — Universal Health Services, Acadia Healthcare, Devereux Advanced Behavioral Health and Vivant Behavioral Healthcare. (Disability Scoop)
Scientists Reveal the First Sign of Autism: ‘Key Discovery’ A look at what happens in the womb. (Newsweek)
Mealtimes can be tough when your child is autistic or has ADHD. Here are 5 tips to try You might find this article a little simplistic, but maybe there’s some tidbit that can help. (The Conversation)
‘A Little Something Extra,’ Starring Actors With Disabilities Wins Big at French Box Office The feel-good movie, which could be on its way to the U.S., is about a son and his father who rob a shop and leave town to lay low, finding themselves at a summer camp for young adults with disabilities. (Variety)
New York State Assembly Member Rebecca Seawright has announced the passage of her legislation in both houses designed to help the growing staffing crisis for people with developmental disabilities. It will soon be delivered to the governor to sign.
The bill would require the Commissioner of the Office for People with Developmental Disabilities to submit a report detailing the number and nature of state-operated residential facilities serving individuals with developmental disabilities, an official record of staff delivering services and the hiring of new staff at these residential facilities.
This report must include the total number of full-time equivalent staff by position or title for OPWDD, the 2022-2023 fiscal year full-time equivalent budgeted staffing level by position or title for the office for people with developmental disabilities, the number of full-time equivalent staff that separated from service between April 1, 2022 and December 1, 2022, the number of staff hired from April 1, 2022 to December 1, 2022, and the number of unfilled and vacant positions as of December 1, 2022 at each state-operated facility.
The report will also include the number of full-time equivalent staff, the steps taken by OPWDD to recruit staff for new and vacant positions, a list of state-operated residential facilities detailing which facilities are owned or leased, and the number of eligible clients with developmental disabilities currently on a waiting list to receive care.
This bill would require that the report be posted for public inspection on OPWDD’s website.
Photo: Assembly Member Rebecca Seawright (center) with Gov. Kathy Hochul (Flickr)
The shortage of teachers, the lasting impact of the coronavirus pandemic and the continued strain on resources have hit America’s 7 million students with disabilities especially hard, writes the The Washington Post. An assessment of the state of this particular union will be hosted by Washington Post Live on Thursday, June 20, 2024 at 11 a.m. ET.
There will be conversations with Education Secretary Miguel Cardona, Ford Foundation program officer for U.S. disability rights Rebecca Cokley and the National Center for Learning Disabilities CEO Jacqueline Rodriguez. They will discuss learning programs for special needs students, ways to better prepare educators to work with the student population and the broader state of disability rights in the schooling system.
You can register and submit a question here.
Photo: Pexels.com
Prepare for a mouthful: The Department of Health and Human Services (HHS) FY 2019-2023 Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Autism Collaboration, Accountability, Research, Education, and Support Act (Autism CARES Act) of 2019 has been released.
The annual report is required by the Autism CARES Act of 2019, which allocated $1.8 billion for autism research, education, and training programs through 2024 and is now up for reauthorization. The report describes the autism-related activities of over 25 federal departments, agencies, divisions, and offices between fiscal years 2019 to 2023.
Interesting findings include:
You can read the whole report here.
A look at SSI’s cruel marriage penalty, an airline does practice runs for people with autism, and more developmental disability news for the week ending June 14, 2024.
Historic $50M Donation Establishes Intellectual and Developmental Disabilities Institute at University of Rochester Medical Center (Democrat & Chronicle)
Layoffs averted: How Yonkers found cash to keep 239 school staffers hired with federal aid The layoffs had been sure to hit special education. (lohud.com)
People with autism now eligible for medical marijuana in Conn. (NBC Connecticut)
Questions surround Tennessee’s plan for adults with intellectual and developmental disabilities This is an unconscionable mess: The state announced it was decommissioning community homes where adults with intellectual and developmental disabilities have lived for years to make way for foster kids, pitting one group against another. But disability advocates are telling people they do not have to leave. (Tennessee Lookout)
Supreme Court rejects dad’s appeal to record school meetings about autistic son’s needs The father wanted to record a meeting to discuss whether extra support was needed for his autistic high school son. (USA Today)
Clinical Standards For Controversial ABA Therapy Gets Major Update (Disability Scoop)
There are two very telling and moving pieces this week, both written by writers who have children diagnosed with Autism Spectrum Disorder.
My son has autism. Schools misunderstand him. I fear police will, too. “He is a Black and Mexican child who presents as a typical teen and is met with impatience and aggression from those who do not know him.” (USA Today)
True inclusion is still a dream for people with disabilities “The ad in the paper for this chorus said, ‘No audition. Anyone can sing with us!’ Apparently, it really meant, ‘Except you.'” (Daily Hampshire Gazette)
These disabled people tried to play by the rules. It cost them their federal benefits A very deep dive into SSI’s cruel marriage penalty. (NPR)
How flights to nowhere can help ‘lessen the anxiety’ for travelers with autism Breeze Airlines, in partnership with Autism Double-Checked, has started giving boarding demonstrations for people with developmental disabilities. (USA Today)
Marriott Agrees To Better Accommodate Guests With Disabilities One of the world’s largest hotel chains is making changes after federal prosecutors said that people with disabilities faced numerous barriers reserving rooms. (Disability Scoop)
By Roberta Bernstein, Editor of The Boost, and Heather Ash Burroughs, Director of Advocacy at AutismUp and co-lead for the New York Alliance for Developmental Disabilities (NYADD). This piece first appeared in the New York Post.
Nearly five years ago, a nonprofit-run group home with room for six young adults with intellectual and developmental disabilities (IDD) made plans to open in Westchester County, N.Y. With group homes closing and waitlists growing, the new house, a place where these individuals could thrive in a safe and supportive environment, was the rare success story. It was also a beacon of hope for aging parents desperately worried about where their children would live out their lives.
Despite fierce opposition from the well-to-do community, often tinged with nimby-ism, the house was cleared to open. But it then faced an even more challenging issue: the hiring of Direct Support Professionals (DSPs), the people who deliver essential support to those with developmental disabilities. A severe statewide shortage of these trained caregivers — which has reached crisis proportions and affects countless individuals — meant the house did not open fully staffed. To this day it still can’t accommodate all six residents.
DSPs, who are part of the national Direct Care Worker sector, provide crucial support for individuals in a variety of settings. They assist with daily living skills, oversee recreational and educational activities, shop, cook, administer medications, manage behaviors and much more. It’s a difficult, extremely rewarding job staffed by dedicated professionals, but many are dropping out and potential new ones opting out because it doesn’t pay a living wage.
The New York State 2024-25 fiscal year budget fails to change this. In fact, it effectively gives DSPs a pay cut.
Despite being the backbone of the developmental disability care economy, many DSPs, who often work double and triple overtime to make ends meet and who are disproportionately represented by women of color, receive a meager starting wage of $16.13 per hour. Advocates, allies, and a handful of vocal legislators fought for the budget to include a 3.2% cost of living adjustment (COLA) for DSPs — knowing most if not all of it would go to nonprofit agency costs — as well as for a critical $4,000 wage enhancement to go directly to DSPs’ annual earnings. Instead, the budget allots a 2.8% COLA, which doesn’t even cover inflation, and omits the wage enhancement.
The Governor knows the numbers. Chronic shortages in state funding have led to nonprofit provider agencies, which serve 85% of needed developmental disability services in the state, being unable to offer the competitive wages needed to recruit and retain staff. This has resulted in a 31% turnover rate and nearly 20,000 unfilled positions statewide. Turnover costs for non-profit providers have risen to more than $100 million annually.
There’s a tendency for those without a personal connection to people with developmental disabilities to overlook the challenges faced by this population. This is a mistake. Increasing numbers of children are being diagnosed with these issues, including those diagnosed with autism spectrum disorder, according to the CDC. The prevalence of any diagnosed developmental disability now affects approximately 1 in 35 children nationwide.
Nearly four decades ago, the state closed the Willowbrook State School, a notorious snake pit of neglect and abuse for children and adults with disabilities that, most importantly, robbed them of their dignity and human rights. Today, the conditions are ripe for a return to such harrowing institutional warehousing.
While the New York legislative session is over June 6, legislators can be called back to Albany by Gov. Hochul for special legislative sessions. There is still time to course-correct and prioritize the needs of this vulnerable population. The DSP issue is just the tip of the iceberg for a community whose needs have historically been put on the back burner or ignored. Gov. Hochul must act now.
Image: Flickr