First, some quick background. The federal Early Intervention Program provides services to children under the age of 3 who have developmental delays or are at risk for delays and disabilities. (It falls under the Individuals with Disabilities Education Act, or IDEA, Part C.) State involvement is not mandatory, but all states participate.
But are eligible infants and toddlers getting all the services they need? I don’t think you need me to answer that. In New York alone, as Chalkbeat reported back in March, early intervention services aren’t reaching a whopping 42% of those eligible.
This week, three news sites focused on the program and its challenges in three different yet connected ways.
ABCnews.com has a helpful bird’s-eye view on a system “plagued by chronic staffing shortages” and long wait times for proven therapies. Many who enroll, it notes, age out before receiving any services at all. “Almost all states reported Early Intervention provider shortages in 2022, and federal officials say they are still struggling to find staff to meet the needs of children with disabilities,” the report says. In Illinois, for instance, service delays nearly doubled in 2022.
There are not only delays, there are disparities in who receives services. That’s according to a survey released this week by the U.S. Government Accountability Office that found there’s not enough pre-enrollment data to help Early Intervention Programs reach those who are eligible. This missing data, reports K12dive.com, may be able to help reduce disparities in early interventions.
Researchers, for instance, found that 86% of Asian children advanced from referral to an evaluation, while only 59% of American Indian or Alaska native children did. For Black or African American young children it was 75% and for both Hispanic or Latino and White children, it was 81%.
In what seems like good news, Tennessee is first out of the gate with a state extension of early intervention services until enrolled participants reach school age, specifically the beginning of the school year following the child’s fifth birthday. It’s “the top age range” allowed for early intervention services through IDEA.
A side note: School districts are required to take over special ed needs when a child is age 3, but many are not well equipped to do so. They face many of the same challenges as early intervention programs, such as staffing shortages and other painful problems.
A New Jersey town’s apartment project for adults with autism, fed aims to ease the shortage of special ed teachers, why sex ed is crucial and more developmental disability news for the week ending Oct. 14, 2023.
City Moving Slow on Requirement for Sidewalk Ramps at Every Corner One deadline has already been blown and officials are still figuring out a new timeline. (thecity.nyc)
DIY jobs: When they couldn’t get hired, these disabled New Yorkers launched their own businesses (newsday.com)
Apartment project in N.J. town designed specifically for adults with autism A mother creates a neuro-diverse housing project in Red Bank through her nonprofit, Parents with a Plan. (nj.com)
N.J. wrongly forces people with developmental disabilities into nursing homes At least 2,000 people with developmental disabilities reportedly are housed in nursing homes “contrary to their wishes” and in violation of their constitutional rights. (nj.com)
Should Philly Have an Office for People with Disabilities? It’s now up to voters. (Philadelphia Citizen)
Battle Over Nation’s 1st Religious Charter School Heads to Oklahoma Courts The plaintiffs say the virtual Catholic charter school would violate Oklahoma law and potentially discriminate against LGBTQ students and those with disabilities. (the74million.org)
Disability advocates argue against school vouchers in Texas Senate hearing Advocates and parents raised concerns that recipients of Education Savings Accounts who choose private schools would no longer be protected by federal law. (Texas Tribune)
Education savings accounts allow parents to withdraw their children from public district or charter schools and receive a deposit of public funds into government-authorized savings accounts with restricted, but multiple, uses.
Feds Aim To Ease Shortage Of Special Educators Over $35 million will be used to bolster the workforce. (Disability Scoop)
How Accessible Sex Ed Helps Young Adults With Developmental Disabilities Form Healthy Relationships Less than half of students getting disability services receive any reproductive health instruction, and rates are even lower for low-income, autistic, Black, and Hispanic students who use disability services. (Mother Jones)
Study suggests some children lose their autism diagnosis: One researcher unpacks the findings A researcher looks at a paper making headlines this week and suggests it presents possible outcomes for relatively privileged children, as well as relatively high cognitive and adaptive functioning at the time of diagnosis. (spectrumnews.org)
Autism silenced this L.A. teenager. It couldn’t stop him from creating a 70-minute symphony Jacob Rock lives with profound non-oral autism. His condition makes him all but unable to speak, with other debilitating physical effects inhibiting communication and socializing. (Los Angeles Times)
Women with a disability are more likely to experience child marriage than women without a disability Progress toward reducing child marriage has been uneven and stagnant, particularly in fragile states. (publichealth.gmu.edu)
Autism- and budget-friendly costume ideas An advocate and mother of an autistic son offers up some tips. (Autism Speaks)
Using technology to open up wilderness trails to people with disabilities Groups countrywide working to ensure all hikers and bikers have access to outdoor spaces regardless of their disabilities. (NPR)
Stand-up comedian Graham Kay has written and stars in a show about life with his autistic brother, Peter.
Playing at Under St. Marks in the east village through Oct. 14, 2023, Pete and Me explores their relationship from childhood through today — how it has changed and how, in many ways, it has stayed the same. Described as both serious and silly, the comedian uses the stage to contemplate the uncertainty of his future as part-comedian, and part-caretaker.
(Paste magazine loved it!)
A “Without Walls” (WOW) day hab program will soon open its doors in White Plains, N.Y. It’s run by Living Resources, a non-profit with WOW programs in 11 other New York counties. Plans are for the White Plains program to open its doors to participants around mid-November — and slots are available! (See below for contact details.)
As the name implies, a WOW program is day hab that emphasizes community inclusion. This is done through volunteer work and recreational activities. “The whole goal of [WOW] is to have them out in the community all day long,” says Rob Scaccia, Intake Coordinator & Development Specialist, Living Resources.
The organization’s other WOW programs are in Albany, Rensselaer, Columbia, Greene, Warren, Dutchess Schenectady, Saratoga, Ulster, Orange and Rockland counties.
Right now the White Plains program is fixing up its space — located at 280 Dobbs Ferry Rd. — hiring more staff and scouting for volunteer sites that need help.
“We’d like to get started with one or two sites,” Scaccia explains. “The recreational activities, they’re easy to come up with, there are so many things to do in this area.”
Living Resources opened WOW programs in Orange County four years ago, and Rockland County one-and-a-half years ago.
“Even with COVID the growth has been phenomenal,” says Scaccia. “Orange opened with two people the first day and now it’s up to 45.
Those interested can reach out to Scaccia directly at rscaccia@livingresources.org. Or, have the potential participant’s Care Manager reach out.
A Care Manager will need to help collect and process the slew of paperwork needed to determine eligibility, and otherwise help to get the ball rolling. WOW programs accept Medicaid and Self-Direction.
Photo: Living Resources
A virtual training that shows why hiring people with disabilities is good for business is being offered to New York employers.
Launched by the Office for People with Developmental Disabilities (OPWDD) and called “EmployAbility: Benefits of Hiring People with Disabilities,” its creation was signed into law by Governor Hochul last year. Its goal is to help educate employers about the benefits of diversifying their workforce.
The first training, free and available to any New York employer, will be held on Oct. 24, with more offerings planned in the future. Learn why hiring people of all abilities is good for your business and take the critical first step toward finding qualified employees who can diversify your workforce and improve your bottom line.
You’ll learn about the associated tax credits, strategies to hire and support employees with disabilities, receive info on reasonable accommodations, and much more.
The training’s launch comes during National Disability Employment Awareness Month (NDEAM).
One out of four adolescents with autism spectrum disorder go undiagnosed, disability-related complaints against airlines surged 200%, the Supreme Court weighs a big disability case and more news to know.
A new study out of Rutgers University has found a significant number of undiagnosed cases in 16-year-olds with autism spectrum disorder (ASD), particularly among adolescents with mild forms of impairment and the high percentage of adolescents who also have other neuropsychiatric disorders.
Conducted in the New York-New Jersey metropolitan area, the study joins a growing body of research at Rutgers, the site of a statewide autism spectrum disorder center established in 2018. One study released in January of this year found that autism rates had tripled, a gripping stat that raised the question of whether ASD is increasingly common or whether we’re just better at diagnosis.
For more on the latest study, NJ Spotlight News video has a good video explainer that includes a parent who already knew their child had fallen through the cracks.
BluePath Service Dogs Help Autistic Children from Bolting and Wandering These beautiful and well-trained dogs are wonderful with their charges. If you want to see them in action, this short docu focuses on a BluePath dog’s journey and the people who are part of it. (Examiner)
Westchester-based sports program for special needs kids began in family’s backyard Able Athletics and its army of young volunteers has kids playing adapted lacrosse and much more. (lohud.com)
Haledon, N.J. police compiling vital information for residents with autism A Passaic County town institutes a voluntary program to help first responders act with compassion and understanding. Back in January, police departments across Camden County began establishing similar registries. (northjersey.com)
Detroit mom of teen with autism advocates for medical marijuana at school Michigan allows medical marijuana use for minors, but to use it during school hours state law requires checking out of class and driving 1,000 feet from campus. (fox2detroit.com)
Missouri’s proposed disability changes could violate law The state moved this summer to delink self-directed supports (SDS) from the rate it pays home health agencies, paying last year’s rates for SDS. Not good, Missouri. (Missouri Independent)
Adults with disabilities segregated in Colorado nursing homes, federal government says in lawsuit The civil lawsuit claims that Colorado failed to offer sufficient community services to help people with disabilities, including older adults, live in their own homes. (Stateline.org)
LA School Bus GPS Tracking Great Idea, Not Always Accurate This is interesting in light of New York just introducing what’s likely a similar app for tracking school buses. (the74million.org)
Supreme Court weighs curbing disability rights laws The court grappled this wekek with whether a disability rights campaigner can sue hotels for failing to clearly disclose accessibility info on their websites as required by the ADA if she doesn’t plan to book a room. (NBC News)
Labor Department Scrutinizing Subminimum Wage Employment It’s still legal for some people with disabilities to work for less than minimum wage. (Disability Scoop)
In Australia, a royal commission leaves disability segregation on the table The divided recommendations will continue education segregation for at least a generation and possibly longer. (The Conversation)
A University for People with Disabilities Has Been Founded by CNN Hero of the Year Jeison Aristizábal The school reportedly is a Latin American first. (CNN)
Arts Council England to fund project on disability representation in children’s books Draft criteria and outcomes will be shared at the 2024 London Book Fair. (bookseller.com)
Disability-Related Complaints Against Airlines Surged Almost 200% Post-Pandemic Let’s get to the meat of it: Allegiant Air had the most complaints, followed by JetBlue and Frontier. (Thrillist)
The Path Forward: Remembering Willowbrook will be screened at the Marlene Meyerson JCC Manhattan at 6 p.m. on October 12, 2023.
The screening of the film is hosted by ReelAbilities, an organization dedicated to promoting awareness and appreciation of the lives, stories, and artistic expressions of people with disabilities, and will include a panel discussion by those who lived the Willowbrook experience.
Panelists include Bernard Carabello, former Willowbrook resident and founder of the Self-Advocate Association of NYS, Dr. Michael Wilkins, former Willowbrook physician and whistle-blower, and Vicky Hiffa, DDPC Executive Director.
RELATED NEWS: All About ReelAbilities Stream, a Just-Launched Streamer Focused on Disability
The Path Forward: Remembering Willowbrook was produced by the Developmental Disabilities Planning Council in partnership with the New York State Digital and Media Services Center. It has been selected to screen at six NY film festivals so far and has been awarded two “best” and two finalist distinctions. It was selected recently as Best Short Documentary at the Sugar Loaf Film Festival in Chester, N.Y.
The documentary has been translated into Standard and Traditional Chinese, Spanish and Audio Description. Find these and the fully-captioned English version on the NYS Developmental Disabilities Planning Council YouTube Channel.
This month marks the 50th anniversary of the U.S.’s first major federal disability rights law, the Rehabilitation Act, passed on Sept. 26, 1973. The law, which set the stage for the enactment of the Americans with Disabilities Act (ADA) of 1990, prohibits discrimination against people with disabilities in programs that receive federal financial assistance.
Section 504 of the Rehabilitation Act works together with the ADA — which prohibits, among other things, employment discrimination against qualified individuals with disabilities in the private sector — and the Individuals with Disabilities Education Act (IDEA) to protect children and adults with disabilities from exclusion, and unequal treatment in schools, jobs and the community.
“None of these achievements would have happened without the relentless advocacy of disabled people,” Xavier Becerra, secretary of Health and Human Services, said in a statement celebrating the anniversary. “Led by people like the late Judy Heumann, whose tenacity and total commitment to the rights of people with disabilities led her to become known as ‘the mother’ of the disability rights movement people with disabilities, their families, and other advocates came together and changed our country in a fundamental way. ”
The U.S. Dept. of Labor has put out this handy video to help you learn more about the act’s impact then and now:
And in celebration of the act, The ARC has posted these helpful articles:
Photo: Mikhail Nilov via pexels.com
A look at the flawed special ed complaint process, a theater company’s ‘Beauty and the Beast’ features 50 disabled adults, an autistic man gets Maryland to change its driver’s test, and more news for the week ending Sept. 30, 2023.
Disability groups win fight to be included in health equity research The designation of disabled people as a ‘health disparity population’ allows for more funding and research into the health equity barriers disabled people face. (Washington Post)
Significant flaws found in special ed written state complaint process The report’s findings include which states had the most and least favorable outcomes for parents and advocates who filed complaints. (k12dive.com)
GED test center for people with disabilities opens in NYC It’s equipped with both general and specific assistive technology. (NYN Media)
In Long Island, FedEx Partnership Opens Door for Employment for People With I/DD A YAI- FedEx partnership will bring some neurodiversity to the company’s Garden City workforce. (YAI.org)
Photos from Schenectady’s Walk for Autism — Cosplay and Character Edition The event on Sept. 23rd had some A+ costumes. (Times Union)
Former New Rochelle police officer charged with stealing funds from autism charity A 25-year veteran of the New Rochelle Police Department who retired in August 2021, was charged with grand larceny in the fourth degree. (westchester.news12.com)
A NYC student’s yearslong struggle to get proper instruction for dyslexia Experts estimate that 5% to 20% of students may have some degree of the language-based learning disability. (Gothamist)
MTA puts limits on ‘life-changing’ taxi service for disabled riders The $16 million the MTA spent each year for the on-demand program was a drop in the bucket compared to the agency’s overall paratransit budget. (Gothamist)
Chicago Public Schools’ vocational training program for students with disabilities could expand (Chalkbeat)
Louisiana Dept. of Education failed to investigate 40% of disability complaints (Louisiana Illuminator)
In Massachusetts, abuse and neglect in some residential schools for children with severe autism (Boston Globe)
Nashville theater company puts on ‘Beauty and the Beast’ featuring 50 disabled adults Go behind the scenes! (Wbur.org)
A company’s special ed teacher training courses didn’t meet Virginia standards The state Board of Education unfortunately approved the new partnership with the below-par company. (richmond.com)
An autistic man kept failing Maryland’s driver’s test. Officials changed it. The overhaul comes as part of an MVA effort to make its testing more inclusive. (Washington Post)
Boston College professor creates program to help Black teens with Autism improve mental health Still in its testing phase, the virtual program is a way to role-play. (CBS News)
Student on autism spectrum thriving in marching band “It’s so incredibly touching to see him out on the field overcoming so many social, spatial and linguistic challenges.” (starbeacon.com)
End of pandemic-era payments to family caregivers could complicate workforce shortages (McKnights Senior Living)
What it takes to get a disorder recognized How a nonprofit was created to build a community for children with Non-Verbal Learning Disability (NYNMedia)
Brazil: Disability Plan Should End Warehousing Thousands of people with disabilities live in institutions or inclusive residences under prison-like conditions. (Human Rights Watch)
‘Ask, Don’t Assume’ launched to challenge perceptions around disability The ad campaign from M&C Saatch, which can be seen on the streets of London, is powered by the lived experiences of disabled people. (Creativebrief.com)
The Rise of Autistic Ultrarunners A fascinating, first-person essay from autistic ultrarunner Ishmael Burdeau. (Irunfar.com)
Stephen King’s ‘Holly’ is admirably nuanced about autism The King, this time, seems to get it right. (Washington Post)
My teenage son has autism. Here’s what I wish his teachers and therapists understood. “Although we, parents, aren’t necessarily authorities in the fields of education or therapeutic interventions, we are experts in our children.” (Chalkbeat)
The project, introduced in 2019 and paused during COVID, is possible due to school buses now being required to have the automated vehicle location equipment (AVL) that makes tracking possible.
Over time, updates to the app will provide families with notifications on the expected arrival time of the bus, information about the time and location at which their child is getting on and off the school bus, and notifications about delays.
Learn more on the NYC Public Schools website.