Project SHINE, a sexual health initiative for youth with intellectual and developmental disabilities (I/DD) launched in Spring 2021, has released a new Sexual Health Toolkit and sexual health game.
The toolkit, designed to help individuals make informed decisions around sexual and reproductive health, includes an illustrated glossary, real-life video testimonials from self-advocates and a resource hub.
It also features a “sexuality wheel” made up of spokes that tackle subjects such as “Anatomy,” “Sexual Orientation” and “Body Image.” The easy-to-understand explanations make up a useful, straightforward guide to issues often challenging to address.
There’s also an online game. Our Stories, Our Journeys: A Sexual Health Game explores more information about sexuality and sexual health. It’s based on stories and ideas from youth and others with I/DD.
The “SHINE” in Project SHINE stands for Sexual Health Innovation Network for Equitable Education with Youth with Intellectual Disabilities. It’s the brainchild of seven community-based New York organizations: Planned Parenthood of Greater New York; AHRC New York City; Disability and Aging Justice Clinic at CUNY School of Law; New Alternatives for Children; Self-Advocacy Association of New York State; Sinergia; and YAI.
“Historically, people with intellectual and developmental disabilities have been excluded from any conversations on sex and sexuality. They have been denied the human rights to sexual expression, comprehensive education, and social-sexual support. Education and related services on these topics are fundamental rights,” YAI’s Consuelo Senior, then-assistant director of Training, said in a statement when the project launched.
“I know that Project SHINE is going to help raise awareness and help to equip people with intellectual disabilities and their supports with tools to form positive relationships, develop sexual advocacy and, ultimately, increase people’s ability to make informed decisions regarding their bodies.”
The project is funded by a three-year grant from Health and Human Services. The Boost has written Planned Parenthood asking what will become of initiative when the funding stops. Stay tuned!
Image: Freepix.com
New York City budget could result in cuts to special ed for preschoolers, California risks its reputation as being developmental disability-friendly, the problematic vaccine stance of RFK Jr., and more developmental disability news for the week ending May 24, 2024.
Early childhood education at center of budget talks between Mayor Adams and City Council Members “slammed” Adams’ proposed budget cuts to early education, noting that some money for programs like special ed for preschoolers will dry up without new investments. (Gothamist)
California prioritizes electric school buses over preschool for children with disabilities Gov. Gavin Newsom invested millions into expanding preschool for children with disabilities. Now, he’s proposing to scale it back to invest more in electric school buses. (Edsource.org)
Man With IDD Stuck In Texas Jail For 5 Months After Group Home Called Police Such arrests are common in group home situations in Texas, according to Krishnaveni Gundu, co-founder and executive director of Texas Jail Project. (Disability Scoop)
Essay: My son is profoundly autistic. Please don’t say he’s merely ‘neurodiverse.’ This writer says advocates are fighting to eliminate terminology that accurately describes his son and thousands of people like him. (Boston Globe)
Essay: My 29-year-old Son Is on the Autism Spectrum — but It Doesn’t Stop Us From Traveling the World (Travel & Leisure)
Advocacy Groups Aim To Tackle Mental Health, Heart Issues Among Those With IDD National developmental disability advocacy groups are inking multimillion-dollar partnerships with big players in health care to better address co-occurring conditions. The goal: To reduce the number of mental health crisis incidents. (Disability Scoop)
How RFK Jr. and Shanahan help deliver false hope to parents of children with autism (CNN)
Feigned outrage over the education of students with disabilities in school choice won’t close opportunity gaps How school choice is leaving vulnerable students behind, exacerbating educational opportunity gaps that already loom large. (k12dive.com)
Bradley Cooper Producing PBS Documentary About Family Caregivers Set to premiere in 2025, it will examine both systemic issues within the care system — where more than 50 million Americans provide unpaid care to family members — as well as tell personal stories of people who care for loved ones. (Hollywood Reporter)
This virtual presentation will guide parents through the process of transitioning their child from Early Intervention (EI) to the Committee on Preschool Special Education (CPSE).
The New York State Early Intervention Program is part of the national Early Intervention Program for infants and toddlers with disabilities and their families. It’s administered by the NYS Dept. of Health through the Bureau of Early Intervention. In New York State, the program has been in effect since July 1, 1993.
To be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay, as defined by the State, in one or more of the following areas of development: physical, cognitive, communication, social-emotional, and/or adaptive.
Preschool Special Ed policy ensures that preschool children with disabilities receive timely and appropriate services in the least restrictive environment and that those services are coordinated with State and local agencies. (You can learn more about pre-school special ed here.)
Details
When: Tuesday, May 21, 2024
Time: 12:30 p.m. to 1:30 p.m.
The presentation is being organized by the Mid-Hudson Early Childhood FACE Center, Lower Hudson Early Childhood FACE Center and NYSED OSE Partnership.
The free webinar will explain what a New York ABLE account is. The tax-advantaged savings program is for individuals with disabilities and their families to save for their current or long-term needs while maintaining their ability to benefit from federal benefits programs such as SSI, SSDI and Medicaid.
The program offers multiple investment options including a checking account and debit card option allowing individuals with disabilities to maintain their independence and have quick and easy access to their own money.
Details
When: Wednesday, June 5, 2024
Time: 10 a.m. to 11 a.m.
For more information, contact New York Alliance at 518-795-3590 or nyaii@nyalliance.org.
Photo: Michelle Henderson, Unsplash
All too often, museums and galleries are exclusive spaces. Some are still not wheelchair accessible, while others don’t bother to explain accessibility on their websites unnecessarily complicating visits. Many others do not offer customized programs or tours geared to make people with developmental disabilities feel welcome and included.
To be fair, accessible programming often requires expertise and a budget, which might not be available to smaller museums and spaces. It’s awfully easy, however, to include an accessibility link on a museum’s website that explains access options. More complicated to create but incredibly helpful are sensory guides (sometimes called a “narrative” or “story”) explaining what visitors with cognitive and sensory processing sensitivities should expect to encounter. Some museums, such as the Guggenheim, also offer a Sensory Map, which connote which areas of the museum one will encounter the biggest crowds and highest noise levels.
Below you’ll find a list of museums in New York that had enough information on their websites to be included on this list. (By enough, we mean they each have at least one more link in addition to accessibility.)
A shout-out to Bedford’s Inclusive Initiative, whose outreach has resulted in several local art destinations being certified as neurodivergent supportive. This includes educating staff on what neurodiversity looks like and what accommodations would be helpful.
This list gets updated periodically. Please check back in. Also, feel free to contact The Boost here if you have a museum you’d like to see added.
200 Central Park W., New York, N.Y., 10024, 212-769-5100
Accessibility & Language Assistance (Note: Service dogs are welcome.)
Discovery Squad Tours: A unique tour program designed for 5- to 14-years-olds diagnosed with autism spectrum disorder. The program was developed in collaboration with the Seaver Autism Center at the Icahn School of Medicine at Mount Sinai. On select Sunday mornings, families can attend a 40-minute tour led by specially trained tour guides, then spend some time exploring activities related to the Museum halls, before the Museum opens to the public. Families are invited to stay after the tour and enjoy the Museum when it opens to the public at 10 a.m.
194 Katonah Ave, Katonah, N.Y., 10536, 914-301-3179
This intimate gallery is certified as Neurodivergent Supportive through the Inclusive Initiative.
1071 Fifth Avenue, New York, N.Y., 10128, 212-423-3500
Guggenheim for All Programs and Events: Custom programming and classes for individuals on the autism spectrum and their caregivers. There is also virtual programming to serve classes of students with autism and sensory sensitivities.
511 Warburton Ave., Yonkers, N.Y., 10701, 914-963-4550
The Planetarium shows and workshops have assistive listening devices and lighting for a sign-language interpreter available.
Pier 86, W. 46th St and 12th Ave, New York, N.Y., 10036-4103, 212-245-0072
The Museum delivers nationally-recognized accessible programming to individuals with physical, cognitive, and sensory disabilities, including autism and dementia.
Accessibility Tools & Events Includes a Sensory Guide and a Visual Vocabulary, which can augment communication or help families and groups focus their visit.
One Hudson Square Building, 75 Varick St., New York, N Y. 10013, 866-454-3772
Sensory-friendly hours: Held on the first Friday afternoon of each month (double-check website for specific dates) and specially designed for neurodivergent visitors, including youth and their families, teens, and adults. ACCESS JRM features limited general admission for reduced crowds and quieter gallery spaces with exhibit audio reduced or silenced, availability of a dedicated quiet zone and interpretive offerings such as tours, picture book readings, and tactile learning opportunities for inclusive exploration. This is not designed as a drop-off activity. All children and youth ticket holders must be accompanied by an adult.
1109 5th Ave. at 92nd St., New York, N.Y., 10128, 212-423-3200
Visitors with Learning or Developmental Disabilities: Examine art, then create a work of your own in these programs for children and adults who have developmental or learning disabilities. Workshops include gallery activities and an art project. For more info call 212-423-3289 or email access@thejm.org.
134 Jay St., Katonah, N.Y., 10536, 914-232-9555
The museum is certified as Neurodivergent Supportive through the Inclusive Initiative.
KMA Sense Family Backpack: Backpack for family visitors with children on the autism spectrum or who have sensory processing differences. It’s available at the front desk and includes noise-reducing headphones, fidget toys, an art activity, and some special books.
11 Davis Ave., Garden City, N.Y., 11530, 516-224-5800
Accessibility/LICM4all: A museum-wide initiative to provide accessibility and inclusion resources for all visitors. Includes Friendly Hours, including alterations to lighting and sound, Sensory Sensitivity Theater, a Sensory Room and assistive devices.
1000 Fifth Ave., New York, N.Y., 10028, 212-535-7710
There are a variety of workshops for visitors with developmental and learning disabilities and those on the autism spectrum. Its Discoveries program starts with a tour of the museum’s collections, usually with a specific topic that’s listed on the registration page, and then is followed up with an art-making activity. There are three age groups, ages 5-13, 14-22, and 23+.
For updates on upcoming programs, check out Facebook or email access@metmuseum.org.
11 W. 53rd St., New York, N.Y., 10019, 212-708-9400
Access Programs for Visitors with Intellectual and Developmental Disabilities, Create Ability: A monthly program that explores works on view and lets participants create artworks. In each session, participants focus on a different theme during interactive activities in the museum’s galleries and classrooms.
36-01 35th Ave., Queens, N.Y., 11106, 718-777-6800
Access Mornings at MoMI: Offered the first Saturday of each month, these are for families with children on the autism spectrum and give families an exclusive opportunity to explore exhibitions and participate in workshops that begin at 11 a.m. before public hours begin.
One Museum Dr., Roslyn Harbor, N.Y., 11576 516-484-9338
Access Resources: They include a Sensory Tool Kit, a Social Story and a Sensory Map. There are also activities to enjoy remotely for people on the Autism Spectrum.
735 Anderson Hill Rd., Purchase, N.Y., 10577, 914-251-6100
There are no specifically designed programs but groups are welcome to reach out to nma.education@purchase.edu to meet the needs of the visitors.
235 Bowery, New York, N.Y., 10002, 212-219-1222
The New Museum offers complimentary or discounted group admission for nonprofit or social services agencies that serve individuals with differing abilities or health statuses.
47-01 111th St., Corona, N.Y., 11368, 718-699-0005
Family Access Programming NY Sci offers programs and resources to bring neurodiverse children and their families together to learn and discover about the wonder of science in an environment that supports their unique needs. Plus: Sensory Sensitive backpacks, a Saturday Sensory Hour, Sensory Playdates, and more.
99 Schermerhorn Street Brooklyn, NY 11201, 718-694-1600
Not an art museum per se, but it has a variety of wonderful programs, all of which are found under Access Programs. They include:
Flushing Meadows Corona Park, Building, Corona, NY 11368, 718-592-9700
Accessibility Actions the museum takes include staff training on disability awareness and researching new ways to improve the physical accessibility of its space in collaboration with MIXDesign.
Art Access Guided Tours & Workshops The Queens Museum provides unique programs for children, teens, and adults with disabilities across the New York City area. ArtAccess programs are designed and led by trained museum educators and teaching artists.
1 Museum Rd., New Windsor, N.Y., 12553, 845-534-3115
I’m including this one despite it only have an accessibility link because it’s undoubtedly an awesome spot. It consists of 500 acres where visitors experience large-scale sculpture and site-specific commissions.
99 Gansevoort St, New York, N.Y., 10014, 212-570-3600
Sensory-Friendly Programs for Neurodivergent Visitors: The Whitney invites neurodiverse audiences to “plain-language” (i.e., clear and straightforward) gallery tours and sensory-friendly art-making workshops on select Saturdays before the Museum opens to the general public. This program is intended for kids ages 6+. There are also private plain-language tours for neurodivergent adults and relevant community organizations available by request.
602 Surf Ave., Brooklyn, N.Y., 11224, 718-265-3474
Sensory Sensitivities: The NY Aquarium partnered with KultureCity to improve the park’s ability to assist and accommodate guests with sensory processing needs. The objective is to provide an inclusive and seamless experience for every guest, regardless of age and ability, including those with sensory processing disorders (SPDs). The Aquarium has installed signage identifying quiet zones and headphone zones to help visitors as they explore the grounds, and offers Sensory Bags.
792 Route 35. Cross River, N.Y., 10518, 914-704-3215
Although it is not wheelchair accessible, this art gallery and co-working space for women is certified as Neurodivergent Supportive through the Inclusive Initiative.
The following is from a press release put out by 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.
With only a few weeks left in the session, NYADD asks why State Senator Gustavo Rivera, chair of the Senate Health Committee, and Assembly Member Amy Paulin, chair of the Assembly Committee on Health, have not put this issue on their agendas.
Legislation introduced in the New York State Assembly, the Complex Care Assistant (CCA) Act — introduced by Assembly Member Phil Steck (A9034) and Senator Shelley Mayer (S8599), both Democrats — 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.
“Providing this care at home prevents long-term hospitalizations that result in drastically higher costs than those associated with paid home caregivers,” said Linda Molina, parent, advocate and NYADD Regional Lead, in the release. “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.”
“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.” Said Shannon Reed LaVigne, also the parent of a medically fragile child and NYADD Regional Lead. “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 social services.”
Playwright Amy Herzog on the strangeness of caregiving, children with disabilities are missing school and more developmental disability news for the week ending May 17, 2024.
Amy Herzog Wants You to Enter Into the Strangeness of Caregiving (New Yorker)
I was blown away by this interview with the playwright of Mary Jane, which stars Rachel McAdams as the mother of a 2-year-old born with serious medical conditions. Herzog wrote the play while caring for her elder daughter, who was born with a rare muscular disease called nemaline myopathy and who died last year at age 11.
“What Herzog brings to the stage is the richness of the relationship within the family but also within a larger constellation of caregivers,” writes journalist Parul Sehgal. “The conversations with doctors and nurses are rendered with piercing specificity.”
And Sehgal’s incisive and sensitive questions result in a rich and and moving dialog that I believe will feel relevant to anyone who has a loved one with a disability.
Plan to build 37 apartments for people with disabilities leads to backlash in N.J. town Critics cite concerns about the proposed demolition of three “historic” houses on the two sites, while advocates say they view the criticism as discriminatory. All I know is, neighborhoods and towns always fight disability housing. (nj.com)
Shivoo, a Digital Directory with Support Staff for People with Special Needs, Partners with CUNY on Training Program Brooklyn-based CUNY and Shivoo create curriculum for Direct Support Professionals (DSP) working with individuals with intellectual/developmental disabilities. (Press release)
Disability groups prioritize communication trainings Disability:IN, a nonprofit organization that encourages inclusion in the workplace, has launched trainings to help people with disabilities better tell their personal stories during the job seeking process. (Axios)
Why children with disabilities are missing school and losing skills A recent federal survey of school districts across the U.S. found special education jobs were among the hardest to staff – and vacancies were widespread. (NPR)
Disability Scoop has several good stories this week, including how Federal officials are concerned about increasing private equity investment in home and community-based services, and this one, which really drew me in: Supreme Court Asked To Consider Whether Parents Can Record IEP Meetings. At issue is whether parents have a First Amendment right to “record government officials in the performance of their duties.” My gut instinct, given the shenanigans (to put it politely) that I know goes on, is a resounding, “Yes, they do.”
Artists with developmental disabilities will be introduced into the collection of a famous museum, the Shrub Oaks school in Westchester County, N.Y., is the subject of a scathing report and more developmental disability news for the week ending May 10, 2024.
A partnership between an iconoclastic art studio in Oakland, Calif., Creative Growth — which began in 1974 as a place for people with developmental disabilities to make art — and the San Francisco Museum of Modern Art (SFMOMA) is making history.
Not only is the museum celebrating Creative Growth’s 50th anniversary with an exhibition, “Creative Growth: The House That Art Built,” but it has pledged to introduce more art by developmentally disabled people from three Bay Area organizations into its collection displays, “and consequently into the canon of modernist art history.”
This is fantastic news. Check out the whole article: At SFMOMA, Disability Artwork Makes History (New York Times)
This School for Autistic Youth Can Cost $573,200 a Year. It Operates With Little Oversight, and Students Have Suffered No state agency oversees Shrub Oak in Westchester County, which enrolls a range of students with autism. As a result, this article reports, parents and staff have nowhere to report bruised students and medication mix-ups. (ProPublica)
NY state prison system breaks law by sending disabled inmates to solitary: lawsuit (Daily News)
17 Years of Noncompliance: Virginia Department of Education Fails Students That is just a damn long time. (Special Education Action)
At a Massachussetts high school, these teens are redefining what it means to have a learning difference A new student club is providing a haven for neurodivergent students while educating others at the school about what it means to have various differences. (Boston Globe)
Student with disability thrives in Anne Arundel County school cafeteria internship Is it good to have more stories on people with developmental disabilities being successful at their jobs? Sure. But this one out of Maryland has an all-too typical “isn’t this amazing” tone that reeks of ableism. Let’s expect individuals with disabilities to be good employees, and let’s help those who aren’t learn how to be better. (WBAL)
Standards Established To Improve Health Care For Kids With Disabilities Developed by a panel of health care experts, adults with disabilities and caregivers, the plan published recently in the journal Pediatrics includes 10 statements across five key domains. (Disability Scoop)
Making Disability Rights History: HHS Announces Powerful Anti-Discrimination Protections A long-awaited final rule implementing Section 504 of the Rehabilitation Act of 1973 creates a powerful tool to combat discrimination based on disability in health care and human services. (Administration for Community Living)
Sesame Place Introduces Low Sensory Days (Disability Scoop)
The Intrepid Museum in New York City, an American military and maritime history museum, was founded in 1982 on the storied WWII aircraft carrier Intrepid. It welcomes over one million visitors annually and, not surprisingly, the crowds at times can be challenging to navigate for individuals with sensory sensitives.
The museum, however, offers several accessibility programs and events over the summer for children with autism and other disabilities. They include early morning programs where families receive a sensory bag with interactive activities, a social narrative and the chance to explore the museum without the crowds. The events include Build It, Sail It, Fly It, where you can learn about the tools used y aircraft restoration specialists at the Museum, and practice building your own designs.
Another of the offerings is its All Access Maker Camp, a week of exploring the Intrepid Museum, solving problems, experimenting with new tools and technology, designing projects, and the chance to make friends. It’s for children and teens ages 8–14 with developmental disabilities.
You can find the list of all the museum’s accessible offerings here.
This free webinar will support parents as they prepare for their child’s transition from preschool special education to kindergarten.
Topics covered include:
Details
When: Thurs., Aug. 22, 2024
Time: 12 p.m. to 1 p.m.
Zoom Registration Link: Click Here