When the dust settled on the New York State 2024-25 fiscal year budget passed in April, there was plenty of disappointment to go around in the disability community.
Many were especially concerned about a major administrative change that would be made to the Consumer Directed Personal Assistance Program (CDPAP), a change implemented without consumer input.
RELATED JULY NEWS: Sen. Markey Announces Comprehensive Family Caregiving Legislative Agenda
CDPAP is a Medicaid program that provides at-home health care services for eligible chronically ill or physically disabled individuals who have a medical need for help with activities of daily living (ADLs). It gives recipients — roughly 250,000 New Yorkers participate in the program — flexibility and freedom in choosing their caregivers, and enables them to live in their communities of choice instead of, say, in institutions.
Currently, the program’s administrative duties, such as wage and benefit processing, are done via some 600 New York-based fiscal intermediary companies. But the change calls for just one corporation — which is required to come from outside of New York — to administer the entire program, creating, in effect, a monopoly. While this entity will subcontract with some of the existing FIs and Independent Living Centers, these FIs will no longer be able to, among other things, maintain personal records for personal assistants or for consumers’ service authorization or plan of care.
Proposals for that state contract are due on or before Aug. 2, 2024. The anticipated started contract date is Oct. 1, 2024.
There’s more. Politico reports that an “initial slate of changes is around the corner: State health officials plan to roll out a recalibrated billing structure for fiscal intermediaries on Aug. 1.”
The news site also has some interesting color: Out-of-state companies “are already eagerly vying” for the FI contract, with at least one, Public Partnerships LLC, spending some $6,500 a month on a lobbying firm to give it “‘strategic advice.'”
Those worried about the very likely disruptions and disarray resulting from this change might want to message their legislatures. At least two advocacy groups have made this easy:
Yet more evidence that the charter school movement is not good for the developmental disability community, a new PBS show for kids centers on an autistic character, and more developmental disability news for the week ending July 19, 2024.
Report: Charter Schools Are Failing Students with Disabilities
Another study, this one from the Center for Learning Equity, finds that charter schools do not outperform their district-run counterparts when it comes to providing high-quality special education services. “We thought we would turn over rocks and find positive outliers, but really there were very few,” says the center’s executive director.
You can find the report here. (the74million.org)
Judge urges Lyft, plaintiffs to work toward solution in suit about rides for disabled A plea for Lyft to just do the right thing was dismissed by plaintiffs who say a lack of wheelchair-accessible vehicles violates the law. (lohud.com)
Special Needs school in Brooklyn flagged for contaminated air The findings near the Gowanus Canal “are troubling enough” that the state plans to install equipment there to remove harmful fumes. (NYPost)
Niagara University launches new Institute on Disability Awareness The private Catholic university near Niagara Falls’ will formalize existing programs, expand training options and make them accessible to a broader audience. (spectrumlocalnews.com)
Autism Training for First Responders Expands Across Virginia The program helps ease encounters between first responders and people with autism. (news.virginia.edu)
Inside a preschool dyslexia screening program for some of Colorado’s rural students “I think we wait too long to figure these things out,” says a teacher who’s part of the regional pilot program. (Chalkbeat.org)
B.C. to require new homes to be adaptable for disabilities Interesting article on a great idea that developers say they can’t afford to implement. (theglobeandmail.com via Disability Thinking)
Billions Are Spent On IDD Services Annually. Where Does It All Go? Almost 90% went toward services provided through Medicaid. (Disability Scoop)
Japan’s Largest IDD Provider Buys Developmental Disability Centers of Nebraska for $50M It’s reportedly an opportunity for the provider to learn about the IDD market in the U.S. for potential future purchases. (bhbusiness.com)
The Home Depot Collaborates With Disability Community to Enhance Employment Access for Job Seekers With IDD It undertook a review of its entry level hiring and reasonable accommodation process and made adjustments to avoid screening out of applicants with IDD. (Thearc.org)
Accepting Autism: A Sibling’s Perspective This essay is one of the top winners of The Learning Network’s Student Open Letter Contest. (New York Times)
PBS Kids’ First Series Centering on an Autistic Main Character Premieres November Carl the Collector is new 2D animated series for children ages 4-8. (PBS.org)
By Roberta Bernstein, Founder/Editor, The Boost
I’m no policy wonk, a surprise to absolutely no one, though I do understand there’s no escaping red tape. So, I might be missing a few nuances here, but a bill being kicked around in Congress makes me want to bang my head against a wall.
Recognizing the Role of Direct Support Professionals (DSP) Act, which passed the U.S. Senate in March and passed a House committee this past week, proposes that the federal government classify the DSP workforce under its own category vs. the broader “home health care aide” category in which it currently resides.
RELATED: Gov. Hochul Is Leaving Developmentally Disabled NY-ers Behind
The belief is that legislators don’t entirely understand what DSPs do and how important they are. And this unique classification, the bill’s sponsors say, would help accurately track and report workforce needs and shortages that are currently underreported and that can adversely affect things like the setting of Medicaid rates that “influence DSP wages.”
Let’s unpack this. First, it’s depressing to think that many legislators still need to be schooled on the role DSPs play. Regardless, the bill addresses what Congress knows is a critically high DSP turnover rate. A Congressional report attached to the bill notes that in 2021 the average turnover rate of the DSP workforce varied from 28.5% to 87.5% (emphasis mine) depending on the state, with an average turnover rate of 43.3%. Additionally, over one quarter of provider agencies reported that the number of DSPs on payroll decreased by over 10%. And the crisis, as is well known, has gotten appreciably worse.
So, despite the existing data noted — and the data being collected by various state agencies and an avalanche of anecdotal data — the “problem” is a “lack of sound data,” which is needed, the bill’s sponsors say, to start addressing the problem.
Sure, let’s spend more time not even collecting data, but deciding whether to fine-tune how the data is collected. We’ll just wait for the federal government to figure this out while DSPs continue to burnout or choose to work for a living wage instead and group homes continue to close and people with intellectual and developmental disabilities fall through the cracks and families worry about a return to warehousing and their loved ones being treated as less than human. Let’s keep doing that or, maybe Congress could fast-track needed funds to help DSPs get what they deserve, and give our loved ones a chance to thrive. I say let’s go with the latter.
In celebration of Disability Pride Month and the 34th anniversary of the ADA, ReelAbilities Stream is offering all videos free throughout July.
Launched in July 2023, RealAbilities Stream features films celebrating the lives and stories of people with disabilities. It was the brainchild of the ReelAbilities Film Festival, the largest festival in the U.S. dedicated to promoting awareness and appreciation of the lives, stories, and artistic expressions of people with disabilities.
You can learn all about the streamer’s accessibility offerings here.
There’s a substantial collection online, including brand new ones such as imperfect. The documentary follows a company of actors “who live and perform with the uniqueness of disability, and have historically been denied their place in the spotlight.” Their disabilities range from from spinal cord injury and Parkinson’s Disease to cerebral palsy and autism.
New autism study could lead to a more objective diagnostic tool, the fed weighs a change to the Subminimum Wage Program and more developmental disability news for the week ending July 12, 2024.
Spotlight: Disability and Employment in New York City Disability incidence rates are below that of the U.S., but employment outcomes tend to be worse. (NYC Comptroller Office)
Advocates hope trial forces Lyft to provide more wheelchair-accessible vehicles A class-action lawsuit goes to trial Monday in federal court in White Plains. (lohud.com)
New alert in Kansas aims to help find lost adults with intellectual disabilities The process makes it quicker to coordinate efforts between law enforcement, media outlets and other entities. (wibw.com)
History of SC State Hospital being told through ‘people, not patients’ Able South Carolina’s project uncovers the stories of people institutionalized at a sprawling campus in Columbia. (scdailygazette.com)
Children With Autism Carry Unique Gut Flora, Study Finds The research may lead to a more objective diagnostic tool. (New York Times)
Study Warns Against Too Much Autism Intervention (Disability Scoop)
How this family traveled the world with their autistic son (USA Today)
A mission to empower the autism community through fashion This mother and son discuss their Blue Runway for Autism fashion shows. (ABC News)
Feds Weigh Changes to Subminimum Wage Program (Disability Scoop)
Podcast: Arrest Rates Among K-12 Students Widen When Race, Gender, and Disability Status Overlap (gao.gov)
L.A. Schools Probe Charges Its Hyped, Now-Defunct AI Chatbot Misused Student Data A cautionary tale given AI’s growing and sometimes controversial role in special ed. (The74million.org)
66% of Audiences Are ‘Unsatisfied’ With Disability and Mental Health Representation in Entertainment The survey also found that 40% of all audiences are “very likely” to recommend a show if it showcases authentic representations of disability or mental health conditions. (Variety)
Academy Museum of Motion Pictures in L.A. hosts first disability workshop for Disability Pride Month Glad to read this, representation matters! (Beverlypress.com)
Back in March, 2024, Kerry Neifeld announced her planned resignation as commissioner of the Office for People with Developmental Disabilities (OPWDD) in New York. Now, it’s official.
Neifeld said her goodbyes this past week and Willow Baer, deputy commissioner of the department since June 2023, has been named acting commissioner.
Baer, first hired at OPWDD in 2015 as an associate counsel, has decades of experience in NYS government. If interested, her bio can be found at OPWDD here and on LinkedIn here.
Baer sent out a statement that included some very broad priorities based on OPWDD’s current strategic plan:
Of the hurdles she said “we still face,” the turnover in direct support professionals, worrisomely, was mentioned last.
FYI, if you want to learn more about OPWDD’s ongoing initiatives and progress, there are still upcoming opportunities to join a Strategic Plan Forum. These forums, which have been open to the public since May, focus on hearing feedback on the department’s 2023-2027 Strategic Plan.
An person in-person forum will be held July 9, and two statewide online forums on July 22 and 24. OPWDD will use the feedback to inform future agency priorities and direction. Register to participate in a forum using the links below.
In-Person Forum
Registration: OPWDD Strategic Planning Forum Registration (office.com)
Virtual Forums
A European café chain with a mission to promote inclusion in the workplace has opened its first location in the U.S.
Café Joyeux, first launched in 2017 in France to hire and train people with intellectual and developmental disabilities (IDD), touched down on Lexington Avenue and 52nd Street in New York City in March. It serves speciality coffee and other beverages, plus French-inspired seasonal homemade goods made by “crew members” with developmental disabilities. It also offers catering for meetings and events.
The below film, 47, is a branding initiative for the café that will tug at your heartstrings in a beautiful way — no surprise it snagged four awards the Cannes Lions ad creativity festival in June. It was inspired by the real story of a Café Joyeux employee with Down syndrome who got his first job at 47.
Some 20 European cities have a Café Joyeux, including Paris, Bordeaux, Lyon, Brussels, Lisbon and Cascais. The chain says that altogether it has over 183 crew members and some 115 managers and catering professionals who accompany and train them.
Those interested in employment opportunities can go to https://us.cafejoyeux.com/
Café Joyeux Lexington is located at 599 Lexington Ave., on E. 52nd Street between Lexington and 3rd Avenue.
Photo: The staff at Café Joyeux in New York City (Courtesy of Café Joyeux)
Disability Pride Month is celebrated every July to commemorate the passage of the Americans with Disabilities Act (ADA). To celebrate, local governments, organizations and more put on myriad festivals and parades, and hoist the Disability Pride flag in prominent locations.
The civil rights law, signed by then-President George H.W. Bush in July 26, 1990, prohibits discrimination against individuals with disabilities in all areas of public life.
RELATED NEWS: ‘Hello Inclusion’ Music Festival in Bethel, N.Y. July 12 for Disability Pride Month
Its historical significance can not be understated. A major victory in the area of disability rights, it protects people with disabilities specifically from discrimination by state and local governments and employers, and guarantees that people with disabilities have the same opportunities as everyone else to enjoy employment opportunities, purchase goods and services, and participate in state and local government programs.
RELATED NEWS: Disability Unite Festival in Central Park Celebrating the ADA: July 14
While the ADA applies to many areas of life, it does not cover everything. In some situations, disability discrimination is prohibited by laws other than the ADA. For instance, “while the ADA applies to certain types of housing (e.g., housing at private and public universities and public housing programs), the Fair Housing Act applies to many types of housing, both public and privately owned, including housing covered by the ADA,” according to ada.gov.
The flag you see being used is fairly new. The Disability Pride flag was created in 2019 by Ann Magill, a writer with cerebral palsy. The impetus, she told the Accessible Stall podcast, was a combination of the lackluster attention given to ADA celebrations on its 20th anniversary in 2010 and, tragically, the murder of 19 developmentally disabled people in a care facility in Japan in 2016. (The murderer, Satoshi Uematsu, reportedly said severely disabled people were harmful to society.)
The murders were “bad enough,” Magill said, but the tragedy “had dropped off from all major news before the evening cycle. … That’s when I was, gone beyond ‘I want a flag’ [to] ‘We need a flag. We need to be visible.”
The flag first featured brightly colored zigzagging stripes over a black background — representing the barriers people with disabilities must maneuver — but it visually triggered disabilities in some people.
Magill took suggestions and redesigned the flag, straightening out and lightening the color of the stripes, and reordering them to accommodate people with red-green colorblindness.
Each color represents a different disability.
The Arc has a free resource, Why and How to Celebrate Disability Pride Month.
PBS has a collection of documentaries related to Disability Pride Month and the passage of the ADA: Disability Pride Month and the Disability Rights Movement.
The New York Times, in honor of the ADA’s 30-year anniversary, published several great pieces in 2020:
And here’s a history of Disability Pride events out of the University of Washington.
A bill is introduced to permanently extend ABLE account provisions, New Jersey helps support home and community-based workers, and more developmental disability news for the week ending July 5, 2024.
Youth program expands to help NYS children with special needs In collaboration with Weill Cornell Medicine, ACT (Assets Coming Together) for Youth will become a state Center of Excellence for Children and Youth with Special Health Care Needs, working directly with local health departments to help them connect families with care and navigate the health care system. (Cornell Chronicle)
There’s still no ‘Pre-K for All’ for all lof NYC’s special needs children Earlier this spring, the city acknowledged 700 children were waiting for a seat in preschool special education classrooms. It’s a number advocates say has grown. (Spectrum News NY1)
New Jersey Student Loan Redemption Program Will Support Home and Community-Based Workers Eligible workers can receive up to $50,000 in loan relief in exchange for one year of service at an approved home- and community-based services provider agency or as a self-directed employee. (tapinto.net)
For families seeking respite care for severe disabilities, NJ just got a bit more generous New Jersey will provide $7.3 million to pay for additional hours of emergency caregiving for children with intellectual and developmental disabilities. (northjersey.com)
Bi-Partisan Bill Introduced to Permanently Extend Provisions for ABLE Accounts The bipartisan Ensuring Nationwide Access to Better Life Experience (ENABLE) Act was recently introduced in the Senate. (Press release from office of U.S. Sen. Eric Schmitt)
The Supreme Court Just Opened the Door to the Criminalization of Disability The Supreme Court held that people experiencing homelessness could be subject to criminal and civil penalties for sleeping in public spaces. People with intellectual and developmental disabilities in particular face a housing crisis. (Slate)
States Could Help Disabled People Survive Climate Change—By Involving Them Centers for Independent Living have a new challenge: helping disabled people prepare for and survive extreme weather events. (Mother Jones)
Disney’s new theme park disability policy sparks anger Its new policy continues to really piss off a bunch of people. (Yahoo News)
My daughter has a disability. This is the reaction from strangers I hate the most (Today)
What My Adult Autism Diagnosis Finally Explained (The Cut)
If you’ve ever found yourself confusedly scrolling an attraction’s website or standing in a long line on-site to request an accommodation for an individual with a disability, this card from the International Board of Credentialing and Continuing Education Standards (IBCCES) might be for you.
The Digital Accessibility Card (IAC) is free and designed to help expedite the process in what it promises are three easy steps. (Note: The Boost doesn’t know how well this card works, it’s just passing along information!)
The card can be used only at participating amusement parks and attractions.
The video below explains the whole deal, including what you need to do to get one. You can also read all about it on the IAC website.
The card is for anyone requesting accommodations — including but not limited to individuals who are autistic, use a wheelchair, are blind/low vision, deaf/hard of hearing, have mobility support needs, are accompanied by a service animal, have sensory sensitivities, cognitive disabilities, or have other needs and concerns.
Photo: Unsplash.com