Developmental Disability News with a Focus on NYS

‘Rocco Up’ Short Documentary Focus of Very Special Night at Jacob Burns: April 16

Jacob Burns, the nonprofit cultural arts center in Pleasantville, N.Y., that encourages and celebrates diversity in filmmaking, will be screening Rocco Up, a short documentary about a nonverbal autistic boy (Rocco) whose father is teaching him to surf.

Rocco and his family, along with the film team, will be in attendance. They’ll also participate in what’s sure to be an interesting post-screening Q&A and reception. Here’s everyone participating:

This will be a sensory friendly screening and there will be live ASL interpretation.

The night is being presented in partnership with The Nicholas Center, BluePath Service Dogs and Pleasantville SEPTA, and is part of the Community Matters: Now More Than Ever series at the film center.

Details
When: Tuesday, April 16, 2024
Time: 7 p.m.
Where: Jacob Burns Film Center, 364 Manville Rd., Pleasantville, N.Y., 10570
Tickets: $15 (members), $20 (nonmembers)

Buy tickets here.

Virtual Tech Workshops for Neurodiverse Students: Summer 2024  

Calling all tech fans! This summer, neurodiverse students ages 10 – 24 can dive into different tech topics with fun virtual workshops run by the New York City City-based non-profit Tech Kids Unlimited (TKU). No experience is required.

The virtual week-long workshops will each teach a different tech topic. They are:

Details

When: July 2024, Monday – Friday

Time: 1 p.m. to 3 p.m.

Cost: $59 a workshop

Register here 

Tech Kids Unlimited is an education nonprofit that teaches students who learn and think differently to explore the creative power of tech. Students practice work readiness skills, and build confidence through virtual and in-person programs in a fun and supportive community.

Learn about OPWDD Self-Direction Webinar: March 19

The Boost has posted its share of self-direction workshops, including last week, which points to its daunting nature. Here’s another webinar, below, for those who want to learn about these services, obtained through the Office for People with Developmental Disabilities (OPWDD).

Self-direction services allow for more choice in OPWDD-funded supports and services. It gives people a say (up to a point) in where they live, how they spend their days, how they stay healthy and active and more.

RELATED NEWS: Highlights of the Newly Released National Self-Direction Survey

To be approved for self-direction, the individual must be eligible for OPWDD services, enrolled in the Home and Community Based (HCBS) Waiver, and participating in Care Management services through a Care Coordination Organization (CCO). Learn what this all means in the webinar below.

RELATED NEWS: Self-Direction and Community Classes in NYS: Know Your Rights

Details

When: March 19, 2024

Time: 12 p.m. to 1 p.m.

You must register. Click here.

The organizer of this webinar is Westchester Institute of Human Development (WIHD).

Guest Post: Why We Need the New York Complex Care Assistant Act (Act Now!)

This guest post was written by Linda Molina, a lead at the New York Alliance for Developmental Disabilities (NYADD)

A decades-long nursing shortage, exasperated during COVID, has left New York State families with medically fragile children in an impossible bind. New York law does not allow them to be paid for their caregiving work, yet they are forced to give up jobs to help care for their loved ones at home,

Legislation introduced in the New York State assembly, the Complex Care Assistant (CCA) Act, could help change this reality. Introduced by Assembly Member Phil Steck (A9034) and Senator Shelley Mayer (S8599), both Democrats, the bill would establish a program enabling family members to become paid complex care assistants for individuals under the age of 21. If passed, it would be an important piece of the puzzle of how to solve this caregiving crisis.

Medically fragile children have complex care needs that require daily, and even hourly, nursing care — tasks described by the private duty nursing manual and ordered by their physicians.

CALL TO ACTION: To connect with other parents advocating for this legislation, follow Families for Parent Paid Caregivers on Facebook.

Providing this care at home prevents long-term hospitalizations that result in drastically higher costs than those associated with paid home caregivers. Doing so also aligns with the American with Disabilities Act (ADA): In 1999, the Supreme court ruled in Olmstead v. L.C. that individuals with disabilities have a right to receive services in the most integrated setting appropriate to their needs.

CCA Details

The CCA creates a new discipline under a private duty nurse benefit that would allow a parent or family member to receive certification and be delegated tasks by a registered nurse through a home care agency, which would then provide ongoing support and supervision.

This would finally allow family caregivers the person-centered care promised by New York, provide financial stability for their families, and reduce reliance on other welfare services.

In the 2024 State of the Union address, President Biden asked us to “imagine a future with home care and eldercare, and people living with disabilities so they can stay in their homes and family caregivers can finally get the pay they deserve.” This is our goal!

 

 

Your Super Quick NYS I/DD Budget Update

The New York State Assembly and Senate have released their “one-house budgets,” or counter proposals, to Gov. Kathy Hochul’s $233 billion spending plan for 2024-25.

Next comes the hashing out, as legislators and the governor enter weeks of intense negotiations. The planned deadline for the final budget is April 1, 2024, but as many New Yorkers know, the state is always late with its budget. In fact, the whole process has been notoriously dubbed “the big ugly.”

RELATED NEWS: New York Disability Advocates’ Statement on One House Budgets

So, where do things stand for the developmental disability community and its caregivers?

You’ll find the Senate one-house proposal here, and Assembly one-house proposal here.

RELATED NEWS: Budget talks begin in earnest with housing, education, Medicaid

Some brief highlights:

Tickets on Sale for 16th Annual ReelAbilities Film Festival: New York

The ReelAbilities Film Festival: New York, the largest film festival in the country dedicated to promoting awareness and appreciation of the lives, stories and artistic expressions of people with disabilities, is back!

The festival, now in its 16th year, takes place April 3 – 10, 2024, in venues throughout New York City, Long Island, Westchester and online. Its offerings include films, conversations, professional workshops and art events. All films are followed by a talk with filmmakers, protagonists and guests.

This year’s festival features 26 films. They include:

The Hollywood Reporter, in its review for Ezra, writes that it “earns its crowd-hugging stripes legitimately thanks to its superb ensemble and sensitive direction that never gets in the way of its knowing script.”

Events include the ReelAbilities Industry Summit: Disability Inclusion and Equity in Film + Performing Arts (April 8) and the ReelAbilities Comedy Night (April 9).

You’ll find all info on the ReelAbilities festival website.

Photo: Okthanksbye/ReelAbilities

More Developmental Disability News for Week Ending March 16

The fight to get New York’s direct support professionals a living wage, Biden calls for investment in disability services, and more news for the week ending March 16, 2024.

New York

Podcast: Making the Case to Boost the Pay of DSPs Assembly Member Karen McMahon, a Buffalo Democrat, and Anne McCaffrey, president/CEO of People Inc., talk a living wage. (Capitol Pressroom)

Rally cry to Hochul: Boost wages for workers who aid NYers with developmental disabilities  More than 1,200 showed up to “Rally in the Valley” in Stony Point. (lohud.com)

National Dance Institute marks 10 years of Dream Project performances The program, which gives dancers of all abilities the chance to perform, is part of the curriculum of 50 schools throughout New York City. (westchester.news12.com)

Outside of New York

Thousands of Philadelphia students are owed special ed services from the pandemic Some were still unaware their children were entitled to extra help. (Chalkbeat)

It shouldn’t take a lawsuit for D.C. to do right by disabled students Unreliable school bus service is disrupting families and keeping children from arriving at school on time or at all. (Washington Post)

Nebraska Department of Health and Human Services offers new waiver for developmental disabled children While not as much coverage as the full DD waiver, it gets help to many families earlier, needed in a state with a 2,000 person waitlist. (ketv.com, first seen in the Medical Motherhood newsletter)

Education

Some Teachers Less Likely To Refer Kids For Special Ed Research suggests that a child’s likelihood of being referred for special ed services is greatly influenced by the race of their teacher. (Disability Scoop)

Where graduation rates for students with disabilities are improving The for-profit company Marker Learning crunches the data from the National Center for Education Statistics. (Marker Learning)

State of the Union

Biden Calls For Investment In Disability Services Biden used his State of the Union address to urge Congress to add funding for Medicaid home and community-based services. (Disability Scoop)

Healthcare

Health groups aim to improve care for people with intellectual disabilities The nonprofit Institute for Exceptional Care convened health care providers, professional organizations and patient advocates to outline steps the health care system can take. (Axios)

Autism

A new understanding: how research into autism is evolving In England, a pilot therapy aims to support and maximize the babies’ communication and brain function by focusing on the one-to-one social interaction they receive in their first year with parents or carers. (The Guardian)

A firm that serves kids with autism grew until it had 265 clinics. Then private equity took over. Blackstone bought CARD, which specializes in the controversial therapy Applied Behavior Analysis, in 2018. By 2023, CARD had shuttered 100 locations and declared bankruptcy. (nbc.com)

Essay

Play

The Toy Association Is Honoring Developmental Disabilities Awareness Month with This New Guidebook The Playbook features nine play ideas that can be “adapted to children’s varying interests and abilities.” (giftsanddec.com)

Tech

How we can make AI less biased against disabled people A study published last year found that trained AI models exhibit significant disability bias. (Fast Company)

Advertising

Fresh Campaigns Urge Ad Creatives To Portray Disability Realistically U.K.-based Business Disability Forum has published guidelines on the responsible use of disability-related imagery as part of its Changing the image of disability” campaign. (Forbes.com)

‘Hear Our Voices’: Employment Barriers Zoom Discussion for Self-Advocates: March 27

The Community Support Network at Westchester Institute for Human Development (WIHD) has an excellent program, “Hear Our Voices,” aimed at empowering, educating and self-advocates. The virtual meetings are also an opportunity to develop social connections.

Its educational programming explores relevant topics for advocacy and, in doing so, helps teach those with I/DD how to become leaders and to make the changes they need.

Its upcoming discussion, “Employment Barriers,” will explore, among other things, the barriers that make employment difficult, suggest solutions, and include a discussion on the changes self-advocates would like to see to help ease the employment crisis for people with developmental disabilities.

This meeting, as are all “Hear Our Voices” meetings, is for any interested self-advocate anywhere in New York State. You do not have to have attended other meetings; everyone is welcome at all times.

Details

When: March 27, 2024

Time: 6 p.m. to 7 p.m.

You must register. Click here! 

For more information contact: Brendan Klein bklein@wihd.org or Mariela Adams madams@wihd.org.

Concert & Dance Party for People of All Abilities: Aug. 11

An infectious band of musicians whose interactive concerts are carefully calibrated to appeal to people with developmental disabilities and sensory sensitivities has an upcoming date.

The Especially Everyone (EE) Ensemble has a phenomenal mission: To help people of all abilities experience “authentic joy.” The rollicking 10-member band — which plays original and cover songs — fronts an event that includes dancing, encourages singing, and features a customized easy-to-play keyboard that gives people the chance to join in the fun. There are also sound stations where different sounds and instruments can be explored.

RELATED NEWS: Meet ‘Especially Everyone,’ an Inclusive Musical Experience

Those with sensory sensitivities or who may simply need to take a break can do so in designated break areas stocked with relaxation items.

On its website, EE says it makes a conscious effort to keep the noise level at a moderate volume and provide hearing protection like earmuffs and ear plugs.

When: Sunday, Aug. 11, 2024

Time: 2 p.m.

Where: Garcia’s at the Capitol Theatre, 145 Westchester Ave., Port Chester, N.Y., 10573

Cost: $29.60

Purchase tickets here

Everything You Need to Know About Rebecca School North for Students with Neurodevelopmental Delays, Opening in Westchester County

The Rebecca School, a New York City private school for students ages 3 to 21 with neurodevelopmental delays in relating and communicating, has expanded to Westchester County, New York.

Rebecca School North, opening Fall 2024, will be located in Mount Vernon at 1 Bradford Rd., not far from the Pelham train station. It will also accept students from northern Manhattan and the Bronx.

A majority of the current school’s student body, says Program Director Tina McCourt, has been diagnosed with Autism Spectrum Disorder, “but we make sure our program can fit any child who needs a specialized education.”

McCourt notes that the school’s market research “showed us that Westchester doesn’t have enough specialized education options. We felt that we’d be opening up a choice for families that need one. Having been in [NYC] for 18 years, we see what we’ve been able to provide for students, and how we’ve been able to individualize the program [taking into consideration] the individual and their family.”

The NYC location has 155 students ages 3 to 21. Rebecca School North has plans to accommodate up to 112 students in 14 classrooms, and to roll out with five classrooms with about 40 students, with a teacher-student ratio of 1 to 2.

Rebecca School utilizes the DIR®Floortime model (or the Developmental, Individual-differences, and Relationship-based model). Its mission is to move students up the developmental ladder by building meaningful, respectful relationships and by providing a holistic collaboration between school, homes, and the community.

Open House

One way to learn more about the new school is to attend its open house. No need to rsvp, just show up.

Details

When: Wednesday, March 13, 2024

Time: 5:30 p.m. to 7 p .m.

Where: 1 Bradford Rd., Mt. Vernon

Open house questions? Call Mary at 212-810-4120

Request a Tour

You can also request a tour by going to this link https://www.rebeccaschool.org/request-a-tour.

Photo: Rebecca School North