Lots of extra news this week, so dig in!
Will dyslexia screening be Eric Adams’ signature issue? (cityandstateny.com)
Syracuse University to Host 2nd Annual Disability Pride Week (news.syr.edu)
Rockland teen dancer who uses wheelchair to perform on Radio City’s Great Stage (lohud.com)
‘Her life matters’: A mother’s fight for traumatic brain injury care (Timesunion.com)
Pennsylvania launches program to teach students disability inclusion (Post-gazette.com)
Abuse scandal triggers more supervision of disability care in New Mexico (Santafenewmexican.com)
How Ohio plans to boost its special education graduation rate (k12dive.com)
Proposal on paying parent caregivers of children with highest disability needs advances (Heraldandnews.com)
Why genetic testing should always be offered to children with neurodevelopmental differences (Statnews.com)
Ironman Adds Intellectual Disability Division (DisabilityScoop.com)
In First, CDC Issues Data On Teens With Autism (Disabilityscoop.com)
Study: Disabled People Less Likely to Be Prescribed Medication for Opioid Disorder (USnews.com)
A start-up theater company in Glens Falls, N.Y., which focuses on inclusivity in front of and behind the scenes, has announced plans to mount its first musical production in April 2024.
The show is Snoopy!! (Original), and the group behind it, All Abilities Productions, is the brainchild of Andrew O’Rourke, co-founder and president, and a Glens Falls native with cerebral palsy. O’Rourke attends SUNY Empire State University and is pursuing a degree in theatrical directing with a concentration in management and performing arts. He describes himself as “an avid theater lover and differently abled individual” who started the company to include “anyone and everyone who would like to be involved in theater.”
The organization’s motto: “Where inclusivity and creativity meet.” Its mission statement notes that the theater group “is a community that includes and accepts people from all walks of life regardless of disability, mental or physical; race, religion, sexual orientation, and age.”
All Abilities Productions also hopes to open a performance arts center offering classes to people in the capital region. Company Managing Director Carol Durant, who’s a singer, poet and playwright, “said we should rent a space [to offer classes], and I said, ‘Are you crazy,'” O’Rourke told The Boost. But it took only a moment for him to realize the idea could have legs, O’Rourke added, so stay tuned!
Stay tuned as well for Snoopy!!. Currently, it’s being planned for April 26, 2024, and April 27, 2004, at the Charles R. Wood Theater in Glens Falls.
Because it takes a village, here’s a shout-out to the company’s other members: Theresa Kempf, co-founder; Dylan Lucia, executive artistic associate; and Amanda Taft, marketing director.
There has been a proposed update to the training of pediatricians nationwide that could affect children with intellectual and developmental disabilities (I/DD).
The change, proposed by the Accreditation Council for Graduate Medical Education (ACGME), which acts as the governing body of all U.S. medical residency training programs, means developmental-behavioral pediatricians would no longer be required to be on the faculty of pediatric residency programs.
Read about the proposal, why it might happen, its potential consequences and much more at Disability Scoop.
These Doctors Admit They Don’t Want Patients With Disabilities, was published in 2022 (The New York Times). The focus is on physical disabilities, but it is eye-opening in a way relevant for those with intellectual and developmental disabilities (I/DD).
Children with developmental disabilities (DD) often have increased needs for health care and services, notes the Centers for Disease Control and Protection (CDC). A 2014-2018 study from the National Health Interview Survey (NHIS) found, among other things, that children with a developmental disability were more likely to take medication, and have seen a medical specialist or mental health provider. (The CDC doesn’t seem to have a recent study that covers I/DD overall.)
Looking for things to do? Sesame Street is amping up its autism initiative throughout April, including at its parks, in honor of Autism Acceptance Month.
NOTE: There’s still time to advocate for fair pay for direct support professionals (DSPs), the dedicated caretakers of our most vulnerable. As of April 8, Albany budget negotiations were still grinding on, so The Arc New York is sharing its super simple, one-step email for your representatives. So easy! Do it now!
Fox 5 New York did an excellent piece on the crisis and how the DSP position, the backbone of residencies including the state’s many private group homes, “is on the verge of disappearing” due to disproportionately low wages.
The report spoke with New York Alliance for Developmental Disabilities co-founder Russell Snaith, and discussed the letter the organization sent in March to Gov. Hochul and other leaders of the New York State Assembly asking for 12.5% COLA for non-profit service providers (8.5% is now being negotiated in the budget dealings) and a DSP wage enhancement of $8,000.
The Fox 5 report also has some startling statistics from New York Disability Advocates. Check it out.
Image: YAI/Creative Commons
The New York Alliance for Developmental Disabilities (NYADD) has found what it calls an “alarming” increase in denials and reversals on previously approved self-direction community classes. There have also been reports, it says, of similar issues with Housing Subsidy approvals in non-certified options.
Has this happened to you? Do you know of others who have experienced this? If so, there’s now an easy way to share your experiences.
NYADD has organized a focus group to bring these issues to the attention of the Developmental Disabilities Advisory Council (DDAC) self-direction committee. And as part of its work, it has created a survey, below, to help assess the scope of the issues. NYADD is looking for specific examples of incidences where OPWDD or the Fiscal Intermediary have denied or reversed approvals for community class reimbursements and for issues with the Housing Subsidy.
The data will be shared with the DDAC to help inform the work it’s doing. This sub-committee will be working directly with the consultant OPWDD is accepting proposals for to conduct a comprehensive assessment of the current self-direction service model.
The anonymous survey, found here, is a great way to make an impact. Please take and share!
The New York Yankees beat the San Francisco Giants 6-0 on April 2, but that was far from the day’s most exciting event.
In honor of World Autism Awareness Day, the game started with an unusual, and gorgeous, rendition of “The Star-Spangled Banner,” performed by violinist Ethan Donn, a young man with autism from White Plains, N.Y.
Donn has performed for big crowds before. “Ethan focused on finding his abilities and developing them, and he loves to perform,” the Jewishlink.news wrote in 2021. “He has gone from performing for the Friendship Circle in front of a handful of people to thousands of people at a stadium. He performed for the Mets the last two seasons, and virtually for the New York Yankees and New Jersey Devils this season.”
Check out his latest performance.
Thank you to Ethan Donn, a recent graduate from White Plains High School, for tonight’s beautiful performance of the National Anthem. Ethan, who is 21 and has autism, has been performing since he was 6 and was part of his school’s orchestra, chorus, and mariachi band ? pic.twitter.com/K404WDg9OE
— New York Yankees (@Yankees) June 28, 2022
Hospital visits are complicated and scary, from the admissions process — those forms! — to the constant decision-making to having to communicate clearly with doctors and nurses. To help people with disabilities, and their caregivers, navigate these challenges, a guide, released late in March, is making the rounds from the Raise Center. (Raise is funded by a grant from the U.S. Department of Education Illinois-based Family Resource Center on Disabilities.)
Below is a summary, but the full resource as well as others concerning medical visits can be found here.
Be prepared for bias
Bring along:
Tips for once you’re at the hospital include:
Taking the Fear Out of Dental Visits for Patients With Developmental Disabilities (YAI.org)
AAP Issues New Recommendations on Hospitalized Adolescents, Including Those With I/DD (The Boost)
Clarifying the Family Medical Leave Act for Caregivers of People with Disabilities (The Boost)
An American Idol contestant with autism gets some singing support, a New Jersey school teacher allegedly harms a student with disabilities, and more news for the week ending Saturday, April 8, 2023.
American Idol singers join forces to help a young man with autism on duets night: ‘It is so important that people see this side of my disability’: Teamwork makes the dream work on ‘American Idol’ duets night (Yahoo.com)
I’m speechless: N.J. teacher suspended after holding 4-year-old with autism upside down by his ankles, family says (Nj.com)
Two essays to chew on:
Read about an art show for students from Pennsylvania, New Jersey and Delaware: Hundreds prepare for 3rd annual Tri-State DisAbility Art Show (CBSnews.com)
A family in Broward County, Fla., opens a business that values diversity “to help [a family member] live the full adult life we knew he was capable of”: Car wash employs more than 80 people with autism (Goodmorningamerica.com)
Granted, studies are a dime a dozen, so just putting this out there: Study finds slightly higher risk of autism diagnosis in areas with more lithium in drinking water, but experts say more research is needed (CNN)
The NYS Smokers’ Quitline (1-866-NY-QUITS) is hosting a webinar for healthcare providers called Supporting Patients with Disabilities in Becoming Tobacco Free. Its goal is to improve clinician understanding of common practices and barriers that impact their relationship with people they work with who have a disability and use commercial tobacco products.
New York State residents with disabilities exhibit a higher prevalence of smoking, according to the Quitline. It also says this population “is more than twice as likely to develop chronic conditions often attributed to smoking, such as cardiovascular disease, COPD and diabetes.”
Details
Date: May 10, 2023
Time: 12 p.m. – 1 p.m.
Zoom enroll here
For more information please visit the NYS Smokers’ Quitline Website.