The Boost Friday Newsletter, Sept. 20, 2024
With the presidential election coming up fast, now is the time to ensure that people with intellectual and developmental disabilities (IDD) have their voices heard. To help, The Boost has put together a comprehensive, easy-to-read voting guide for self-advocates and those who care for people with IDD.
The Boost’s NYS 2024 Voting Guide for People with Developmental Disabilities offers information and links to everything from whether guardianship affect’s one’s right to vote to how and where to register, ballot options, accessible voting and disability voter rights. Those outside of New York might find it helpful, as well.
And for those up in arms about the change Gov. Kathy Hochul is making to the Consumer Directed Personal Assistance Program (CDPAP), there’s good news: Opposition is growing. See the news links below and be sure to check out The Boost’s timeline of events, The Heat Is On: A Roundup of the Latest News on Proposed CDPAP Changes.
As always, choose your sweet spots below, and thanks for subscribing. — Roberta Bernstein, Founder/Editor, The Boost |
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MORE NEWS TO KNOW: THE BOOST’S CURATED ROUNDUP
Child care harder to find for children and parents with disabilities, CDPAP opposition grows, and more developmental disability news for week ending Sept. 20, 2024.
Spotlight
Think Child Care is Hard to Find? It’s Even Tougher for Children, Parents with Disabilities
While most parents struggle to find child care, parents of children with disabilities — and parents with disabilities themselves — often face additional challenges, according to a new report from the U.S. Government Accountability Office.
There are various barriers to finding and using child care programs, including:
- Physically inaccessible facilities
- Early intervention and special ed services provided off-site
- Exclusion from activities
- Suspension and expulsion from programs
- Safety concerns
Child care programs, for instance, often require children to be toilet trained by age 3. “For some parents of children with disabilities — this can be an automatic disqualifier for their child,” the report notes.
The whole report can be found here.
New York
Home care agencies sue N.Y. in federal court over CDPAP change Four home care agencies serving New York City and its suburbs join a wave of opposition against the plan. (Times Union)
Center for Disability Rights Calls on Hochul to Protect CDPAP and the Disability-Led Organizations that Established Them (Center for Disability Rights)
NYC cracked down on private school special ed costs. Hundreds of children lost services. The city stepped up enforcement of a June 1 deadline for special ed services — one loosely enforced — while simultaneously giving families less notice about the deadline than in past years. (Chalkbeat)
Lawmaker Calls On State Leaders to Reform New York’s Beleaguered Guardianship System A resolution intends to force Albany to take up the cause of those whom judges have deemed incapable of managing their own affairs. (ProPublica)
Museum telling history of people with disabilities to open on Long Island Slated to open in the fall of 2025, it reportedly will be the nation’s only brick-and-mortar museum on the topic. (Long Island Business News)
Tom Golisano Gifts $360 Million to 82 Non-Profits Across Upstate New York They include disability services. (Democrat & Chronicle)
Outside of New York
Fed-up families say N.J. ignores abuse in group homes. The state doesn’t have the authority to impose fines when developmentally disabled get hurt inside state-licensed facilities. Lawmakers are weighing a change. (nj.com)
Conn. airport airline offers children with autism a chance to get used to boarding process Bradley Airport hosted its third “Autism Flies” event in partnership with Autism Double-Checked and Breeze Airways. (NBC Connecticut)
Johns Hopkins health system to pay disabled patients for alleged violations during COVID In one instance, a young woman with intellectual disabilities reportedly was not allowed to bring her mother into the hospital’s psychiatric unit after being admitted after a suicide attempt. (Washington Post)
‘I hope it makes a difference’: Parents who helped spark Maine DOJ lawsuit speak out The state allegedly failed to provide treatment beds and services, leaving dozens of kids with mental health problems and developmental disabilities stuck in ERs statewide. (New Center Maine)
For Oregonians with disabilities, mental health care can be tough to access (kgw.com)
Local Mass. health center aims to close gaps for diagnosing developmental disabilities in kids of color (GBH)
Down Syndrome
Opinion: Having a Child With Down Syndrome Changed the Way I Think About IQ “As a lifelong overachiever, I’d never questioned the importance of intelligence tests—until I saw my daughter’s unique way of being.” (Wall Street Journal)
Doctors Get Clearer Picture On Developmental Milestones For Kids With Down Syndrome (Disability Scoop)
Autism
Opinion: Tina Brown, And When Even Autism Becomes Politicized Another take on the media response to Gov. of Minnesota and vp nominee Gus Walz’s neurodivergent son, Gus. “This politicizing of autism and disabilities is not surprising: nearly all issues today are seen through the lens of partisan politics. But in the case of autism, it is especially misplaced and counterproductive.” (Forbes)
Autism CARES Act of 2024 Is Halfway There The bill passes the House, and the Senate’s up next. Deadline: Sept. 30, 2024. (Autism Society) |
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The Heat Is On: A Roundup of the Latest News on Proposed CDPAP Changes
Last updated Friday, Sept. 20, 2024.
A new lawsuit and a new bill introduced into the New York State legislature are two of the latest moves of the growing and vocal opposition to the controversial change being made to the New York State Consumer Directed Personal Assistance Program (CDPAP).
The change, pushed through by New York Gov. Kathy Hochul as part of the New York State 2024-25 fiscal year budget passed in April 2024, would replace the state’s existing network of approximately 600 fiscal intermediaries (FIs) with one out-of-state corporation. The process of choosing the agency is being done without oversight from the NYS comptroller’s office.
The plan calls for the new agency’s contract to begin Oct. 1, 2024.
Sept. 18, 2024: Second Lawsuit Opposing CDPAP Change Filed in New York
Four plaintiffs, all home care agencies serving New York City and its suburbs, say they will lose lucrative business contracts under the impending shakeup of the state-backed Medicaid program and are suing the state Department of Health.
Sept. 16, 2024: Center for Disability Rights Joins the Growing Opposition
The non-profit calls on Governor Hochul to protect CDPAP and the disability-led organizations that established them.
Sept. 12, 2024: NYC Council Members Oppose the Change
Fifteen New York City Council Members urged the governor and legislature to rethink the change to a single FI. The letter says CDPAP is “no racket,” and encourages Hochul “to work with the state Legislature and stakeholders on ways to enhance the program, not needlessly strip benefits from our neediest population.”
Sept. 5, 2024: The New Bill
NYS Dem. Sen. Gustavo Rivera announced that he would be introducing a bill to halt the transition to a single FI, as well as establish a licensure process and other guardrails.
New York Senate Bill 9901 reportedly also would give more power “to the commissioner of the Department of Health to require annual reporting from the home care agencies involved in the program,” according to the Times Union, where you can read more about it.
“Sen. Rivera’s legislation is a welcome effort to take into account feedback from community stakeholders and others,” Bryan O’Malley, executive director, Consumer Directed Personal Assistance Association of New York, tells The Boost. “Gov. Hochul’s plan to gift a $40 billion contract to one out of state company at the expense of the seniors and disabled people who rely on CDPAP, and the thousands who work at FIs administering the program, is flawed in every way.”
However, the bill reportedly might not be heard until January 2025 when the legislature reconvenes, “which is notably after the critical deadline of Oct. 1, 2024, for selecting the single statewide FI.”
Rivera, chair of the Committee on Health, made a statement this past July that “it is frankly appalling that the current administration is trying to destroy this program without viable alternatives.”

A still from an ad by My Health My Caregiver, a new entity reportedly launched launched by a group of FIs opposing the governor’s CDPAP changes.
Week of Sept. 2, 2024: Poll Shows Overwhelming Opposition
The new poll, commissioned by the Alliance to Protect Home Care, found that 76% of New Yorkers, and 70% of likely Democratic voters oppose the CDPAP changes.
On its website, the Alliance notes that the change to a single FI will “bankrupt hundreds of small businesses, eliminate home care jobs, and force thousands of elderly and disabled New Yorkers into nursing homes.”
Aug. 20, 2024: Bi-Partisan Coalition of Senators Reach Out to Fed Govt.
NYS Sen. John Mannion led a bipartisan coalition of more than 30 state senators in writing the Centers for Medicare & Medicaid Services to review and reject the governor’s CDPAP proposal. (You can find the letter posted on Spectrum News 1 and on Mannion’s Facebook page.)
It argues that the changes “will significantly restrict access to care [and that they are requesting] that the Centers for Medicaid and Medicare Services promptly review these changes, which we believe will deprive tens of thousands of consumers of the care they need and will likely disproportionately impact vulnerable populations.”
It also stated that “the State has not published any information regarding this transition, conducted an outreach or educational campaign to discuss the changes, nor sought federal approval, as required under federal law.”
FYI, the same Spectrum News 1 article has an interesting interview with Larry Spencer, CEO of Tempus Unlimited Inc., the sole fiscal intermediary that oversees CDPAP in Massachusetts and Pennsylvania. He says a single FI model “can be successful,” but expresses major reservations about how New York wants to implement the change.
Aug. 12, 2024: FIs Sue New York
Proposals for the single FI state contract now in the works were due on or before Aug. 2, 2024. But on Aug. 12, Save Our Consumer Directed Home Care, a not-for-profit association representing FIs and other entities participating in the program, “argued in its petition that the New York State Department of Health’s (DOH) implementation of a Request for Proposal (RFP) for FI services and the changes made to the CDPAP violate several legal and constitutional standards,” according to a blog posting on the Holland & Knight’s law firm website. (There’s also an article on the lawsuit in the Times Union.)
A judge was to hear arguments in the case Aug. 30, 2024, before making a decision to grant or dismiss petitioners’ request for an injunction to delay the bidding process. The Boost was unable to get an update on the hearing as of this posting, but what’s clear is that a ruling had yet to be made.
Aug. 12, 2024: Hochul Hints She’s Rethinking the Change
Also on Aug. 12, the governor backtracked a bit by saying the state may consider contracting with more than one FI, a remark the report says she has yet to clarify.
Background
CDPAP is an approximately (now) $9 billion Medicaid-funded popular 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.
The program’s administrative duties, such as wage and benefit processing, are done via the approximately 600 New York-based fiscal intermediary (FI) companies. It’s a costly program with a growing budget, one which the governor has gone as far as to call “a racket” and “one of the most abused programs in the history of New York.”
The one out-of-state corporation that would administer the entire program reportedly will receive a five-year, multi-billion dollar contract.
The governor had first suggested, as part of her original budget proposal, “new restraints on CDPAP, including lowering hourly wages for some downstate personal care assistants. But those proposed changes [had drawn] fierce opposition from the union representing home care workers and their clients,” reported NBCnewsnewyork.com.
Stay tuned. Things are heating up.
Developmental Disability News for Week Ending Sept. 13, 2024
Some special ed students in NYC reportedly denied services, federal guardrails could be coming to protect Home and Community Based Services and more developmental disability news for week ending Sept. 13, 2024.
Spotlight: CDPAP
15 NYC Council Members Urge Hochul to Rethink CDPAP Changes
The letter says the Consumer Directed Personal Assistance Program is “no racket,” and encourages Hochul “to work with the state Legislature and stakeholders on ways to enhance the program, not needlessly strip benefits from our neediest population.”
New York
NYC parents of special needs students say they were denied services by Department of Education (CBSnews.com)
NYC urged to expedite return of special ed services to students in non-public schools (silive.com)
Artists with disabilities find community, opportunity in Queens through the ArTech Collective (cbsnews.com)
Outside of New York
Newark parents of students with disabilities told their children didn’t have a school (Chalkbeat.org)
Oklahoma lawmakers weigh corporal punishment on special needs students (kjrh.com)
Texas family fights for change after special needs daughter placed on service waitlist for over 16 years (Click2houston.com)
DOJ Sues Maine for Allegedly Violating the ADA by Separating Children from Families (themainewire.com)
Autism
When America’s Views on Autism Started to Change: A Look Back at the Work of Steve Silberman (The Atlantic)
What factors led to the failure to diagnose autism in Black Boys? (Psychology Today)
Federal Govt.
Feds Urge Guardrails To Protect Access To Medicaid Community-Based Services (Disability Scoop)
Biden recaps five decades of disability policy work in final ADA commemoration as president (The 19th)
Entertainment
Rosie O’Donnell Begins Filming Doc About Service Dogs for Children With Autism: ‘They Saved My Child’s Life’ (Variety)
NY Events, Webinars & More Starting Sept. 13, 2024
Be sure to visit links for more information and, where applicable, registration links. If you have an event, webinar or other information you’d like to share with The Boost, please contact us here.
Events
SPOTLIGHT ON
Thurs., Oct. 24, 2024 – Sat., Oct. 26, 2024, Oct. 6 deadline for registration: Self-Advocacy Assocation of NYS 2024 Annual Statewide Conference: (Cost: $255 for full conference; can do one day.) A great way for self-advocates with developmental disabilities to network, learn and raise their voices. Read the information at the link carefully. Some scholarships are available, check them out here.
Fall, 2024: Jacob Burns Film Center’s Upcoming Sensory Friendly Fall Screenings: The film center is in Pleasantville, N.Y.
Fall, 2024: ReelAbilities New York Fall Lineup: ReelAbilities is a film festival and streaming service focusing on people with disabilities. All events and screenings are held at the Marlene Meyerson JCC Manhattan.
Fall, 2024: Intrepid Museum Fall Access Programs: New York City’s Intrepid Museum offers monthly programs for individuals with developmental disabilities and their families.
Sat., Sept. 14, 2024: Rochester Special Education Resource Fair: Second annual. Includes activities, such as visits from the ZoomMobile and therapy dogs.
Sat., Sept. 21, 2024: Inclusive Services Resource Fair at Brooklyn Public Library: 10th Family Resource Fair for children and teens with disabilities.
Sun., Sept. 29, 2024: Rockefeller State Park Preserve’s Abilities Celebration: Second annual. Includes debut of all-terrain chairs.
Tues., Oct. 1, 2024: Disability Rights & Employment Awareness Month (DREAM) Symposium in Albany: Third annual. Assists in matching prospective qualified candidates with employers and more.
Webinars & Town Halls
Mon., Sept. 16, 2024: Rochester Special Ed Parent Advisory Council Monthly Meetings: For parents, guardians and caregivers. Held monthly (first is Sept. 16) “to discuss concerns and to collaborate with the District and outside agencies to discuss and resolve those concerns.” Also to learn about special ed process.
Tues., Sept. 17, 2024: Ready, Set, Vote: Your Guide to Election Day Preparation: Self-advocacy workshop to empower individuals with developmental disabilities to cast votes. Cosponsored by Autism Society and NACDD.
Tues., Sept. 17, 2024: WIHD’s Monthly Decision Making Series: Workshop #1: Three-part monthly series from WIHD reviews supported decision-making (SDM), guardianship and other alternatives.
*CANCELLED (“OPWDD has informed [NYC Fair] that they are not now prepared to participate in the question-and-answer format NYC Fair has followed for prior Town Halls.”) Wed., Sept. 18, 2024: Coordinated Assessment System (CAS) Town Hall: OPWDD is required to perform a conflict-free comprehensive needs assessment for people receiving OPWDD services. (Read more about what CAS is here.)
Thurs., Sept. 19, 2024: Busing Issues 101: Troubleshooting NYC School Transportation Issues: How to navigate Office of Pupil Transportation (OPT).
Fri., Sept. 20, 2024: Special Ed Task Force Webinar: Updates on NYS special ed laws, regulations, state and federal guidance and other trending topics or issues. (Special Education Task Force [SETF])
Wed., Sept. 25, 2024: Nuts & Bolts of Transition Stipends for Housing Webinar, Wed: For those thinking about living independently or are supporting someone on their housing journey.
Wed., Oct. 6, 2024: Parenting With Pride: New virtual support group for parents of LGBTQIA+ individuals with developmental disabilities. (Parent to Parent of NYS)
Scholarships
Deadline Sept. 30, 2024: The Patricio “Pat” Figueroa, Jr. Scholarships: From NYS Independent Living Council. Provides funding for young adults with disabilities to attend and participate in independent living-related conferences, and/or national disability and leadership trainings.
Photo: A still from the movie, Who Framed Robert Rabbit, courtesy of Jacob Burns Film Center.
NY Events, Webinars & More for Week Starting Sept. 6, 2024
Be sure to visit links for more information and, where applicable, registration links. If you have an event, webinar or other information you’d like to share with The Boost, please contact us here.
Events
Jacob Burns Film Center’s Upcoming Sensory Friendly Fall Screenings: The film center is in Pleasantville, N.Y.
Intrepid Museum Fall Access Programs, through December, 2024: The Intrepid Museum offers monthly programs for individuals with developmental disabilities and their families. These programs alternate between virtual and onsite programs, and take place on select Sundays during regular Museum hours. There are also Early Morning Openings for children with autism and their families.
Rochester Special Education Resource Fair, Sat., Sept. 14, 2024: The second annual fair includes activities, such as visits from the ZoomMobile and therapy dogs.
WIHD’s Monthly Decision Making Series: Workshop #1, Tues., Sept. 17, 2024 This three-part monthly series from Westchester Institute of Human Development reviews Supported Decision-Making (SDM), Guardianship, and other Alternatives. It’s advised that the first webinar be attended before moving on to the others.
Special Education Task Force Webinar, Friday, Sept. 20, 2024: Participants will receive an update on new and updated special education laws, regulations, state and federal guidance, and trending topics or issues. Presented by the Special Education Task Force (SETF).
Inclusive Services Resource Fair, Brooklyn, Sat., Sept. 21, 2024: Inclusive Services at the Brooklyn Public Library is hosting the 10th Family Resource Fair for children and teens with disabilities.
Rockefeller State Park Preserve’s Abilities Celebration, Sun., Sept. 29: The second annual celebration includes the debut of two new Mountain Trike all-terrain chairs, which guests will have the opportunity to test, as well as the Action Trackchair and the GRIT Freedom Chair.
ReelAbilities New York Fall Lineup through December, 2024: The organization is a film festival, organization and streaming service that promotes awareness and appreciation of people with disabilities through film & arts. See what’s on offer through December, 2024. All events and screenings are held at the Marlene Meyerson JCC Manhattan.
Webinars & Groups
‘Lunch and Learn’ Webinar on Accessing the Vote, Tues., Sept. 10, 2024: VOICE Buffalo A.R.I.S.E. presents a free webinar on how to ensure your voice is heard regardless of disability.
Learn About Rochester Special Ed Parent Advisory Council Monthly Meetings: The first is Mon., Sept. 16, 2024.
Ready, Set, Vote: Your Guide to Election Day Preparation, Tues., Sept. 17, 2024: A self-advocacy workshop to empower individuals. Cosponsored by Autism Society and NACDD.
Coordinated Assessment System (CAS) Town Hall, Wed., Sept. 18, 2024: The New York State Office for People with Developmental Disabilities (OPWDD) is required to perform a conflict-free comprehensive needs assessment for people receiving OPWDD services.
Busing Issues 101: Troubleshooting NYC School Transportation Issues, Thurs., Sept. 19, 2024:Advocacy tips and resources to help families navigate the Office of Pupil Transportation (OPT) and address other transportation issues.
The Nuts & Bolts of Transition Stipends for Housing Webinar, Wed., Sept. 25: This is for those thinking about living independently or are supporting someone on their housing journey.
Parenting With Pride, a Parenting Group for Parents of Individuals in the LGBTQAI+ Community, Wed., Oct. 6, 2024: A new virtual support group from Parent to Parent of NYS. Check out PPNYS’ whole calendar here.
Scholarships
The Patricio “Pat” Figueroa, Jr. Scholarships, Sept. 30, 2024 deadline: These scholarships from the New York State Independent Living Council provide funding for young adults with disabilities to attend and participate in independent living related conferences and/or national disability and leadership trainings.
Photo: The Intrepid Museum, New York City
These Two Agencies Think Outside the Box to Create Innovative Programs
In a services delivery system as diffuse and imperfect as ours, it’s always heartening to see organizations work outside established channels to help improve the lives of people with developmental disabilities (DD).
One such partnership, between for-profit customized care management company Future Centered Care (FCC) and community center Shames JCC on the Hudson, began as many good things do: With dogs.
First, to lay the groundwork: Since COVID, Shames JCC, a non-sectarian community center in Westchester County, N.Y., has been ramping up its supportive programming under Director of Supportive Services Annie Bridson. FCC, meanwhile, works with neurodiverse adults and their families in the greater NYC area and Westchester County to find meaningful support and services.
So, last year, when one of FCC’s clients wanted to work on social skills, it reached out to Giving Retrievers, a therapy and service dogs program that offers a social skills program, but for a younger population. Giving Retrievers liked the idea of a social skills program for adults, but didn’t have the space.
Enter FCC Senior Case Manager Laura Galbraith, who reached out to Bridson at Shames JCC to see if it could handle the program in-house. It could. It offered the space, and then provided the needed support, such as sign-ups and payment. It was the start of a fruitful relationship.
“It’s such a unique collaboration,” says Bridson. “FCC has direct access to the individuals we’re looking to serve, and they’re looking for specific classes and opportunities to support the growth of the people they’re working with. If I think there’s more of an appetite for a program than their one or two clients, I’m really excited to try it and see if there are other people out in the community who want it, too.”
This fall, The Giving Retriever’s Canine-Integrated Social Skill Enrichment Group at Shames JCC will be starting its second year. Additionally, thanks to the partnership, Shames JCC is also offering a hiking program at Rockefeller State Park Preserve. Participants will have the opportunity to enhance social skills and physical fitness while also enjoying the benefits of nature.

A Beauty & Bonding program participant.
Previous programs included “Beauty & Bonding,” which featured pros from Neiman Marcus providing participants with make-up, hair styling and fashion tips.
Both organizations are open to other such partnerships. FCC, for instance, joined with the non-profit The Extended Family, also in Westchester County, to create a retail initiative. “We had a client who finished an internship at camp where he did really well at a bakery, and then really wanted a job as a cashier,” explains Galbraith. “His parents said they wanted him to practice and not necessarily get a job right away so we went to Extended Family and a ‘mini-class’ was created.”
Galbraith clarifies that FCC “is not a program-development business. We’re eager to connect people and ideas, and we’re ready to provide any necessary support. But [at Shames JCC] Annie does the hard work of pulling it all together.”
Both organizations are just happy that such partnerships can be effective.
“This community is becoming more open to collaboration,” says Bridson. “Sometimes you just need to know where to send [someone] to get what they need. It’s helpful to have the mindset that, well, we’re not going to be experts in everything.”
More Developmental Disability News for Week Ending Sept. 6, 2024
An investigative report on the subminimum wage program, some parents turn to magnetic therapy to help kids with autism, and more developmental disability news for the week ending Sept. 6, 2024.
Spotlight: Employment
Some disabled workers in the U.S. make pennies per hour. It’s legal.
This Washington Post analysis looked at 14 years of federal inspection data, examined the work practices of 228 certificate holders, and spoke with nearly 60 current and former workers and staff members to investigate 14(c) subminimum wage programs. (Section 14(c) of the Fair Labor Standards Act allows employers to apply for a certificate and legally pay disabled workers less than the $7.25 federal minimum wage.)
It found that at least 38% of current employers have violated compensation and other rules, and cheated disabled workers out of millions in pay.
Additionally, it reports that when states have ended 14(c) subminimum wage programs, overall employment of adults with cognitive disabilities has increased; and about one in three current 14(c) employers have failed to correctly pay wages, but that is probably an undercount.
Read the article here.
New York
Rockville Centre home to first certified sensory police department in N.Y. Here are the tools officers use. To parse this a little bit, I think what’s really happening here is it’s the first department to be certified by KultureCity. Regardless, sensory awareness is always good news. (CBSnews.com)
Judge mandates that all new NYC taxis be accessible to wheelchairs (Gothamist)
Elderly and disabled subway riders fight MTA over ‘hazardous’ platform gaps The lawsuit, which accessibility rights advocates filed in 2022, alleges the MTA violates the city’s Human Rights Law. The case is due back in court come October. (Gothamist)
D.A.: Staten Island special ed teacher’s ‘gross actions’ scammed DOE for over $6K She billed for hours she didn’t work, “pilfering funds that were meant for children with special needs. (SIlive.com)
Outside of New York
Pennsylvania Skincare company creates inclusive workplace for those with disabilities Cleanlogic is creating an inclusive workplace for employees with disabilities. (NBCnews.com)
Services for people with disabilities could be eliminated under Louisiana governor’s plan Unbelievable: A projected state deficit makes health care programs vulnerable. (Louisiana Illuminator)
Opinion: Buyer beware — KY’s Amendment #2 is not “choice” it may seem for students with disabilities The amendment would allow state funding to be allocated to private schools for the first time in Kentucky. Private schools are not required to provide educational and other services spelled out in an IEP or 504 Plan. (Lexington Herald Leader)
Governors State Univ. in Illinois allows students with disabilities to ‘find their place’ The university created a curriculum that focuses on helping kids with mild to moderate cognitive disabilities and their parents, kids “who, when high school ended, they just stayed home.” (Chicago Tribune)
Oklahoma Seeks Specialized Foster Care Parents For Children With Developmental Disabilities About one in 10 people in need of foster care in Oklahoma need specialized care. (news9.com)
Autism
Desperate parents turn to magnetic therapy to help kids with autism. They have little evidence to go on Magnetic e-resonance therapy, or MERT, is a magnetic brain stimulation therapy by a Newport Beach-based company called Wave Neuroscience. “Wave has not conducted any studies on whether its signature product works for autism. A Wave executive argued that the need for new autism therapies is strong enough to justify moving forward with commercial solutions before rock-solid evidence is available.” (Los Angeles Times)
Alert Issued After Record Drownings of Kids with Autism “It’s been the worst summer on record for autism and wandering in terms of fatalities,” said Lori Mcllwain, co-founder of the National Autism Association. (From a press released posted on misskids.org)
SSI
Social Security Administration Announces New Efforts to Simplify SSI Applications (Disability Scoop)
Housing
HUD Takes Action to Support Community Living for People with Disabilities HUD guidance creates alternative requirements and waivers that enable public housing agencies to better utilize Mainstream Vouchers to help persons with disabilities transition from and avoid institutional settings. (hud.gov)
Employment
Health
Opinion: I’m Embarrassed to Admit I Have No Idea How to Care for Patients With Disabilities This physician-in-training argues that Medical educators “must do a better job at building a curriculum that adequately prepares physicians to meet the complex needs of patients with disabilities.” (MedPage Today)
Travel
Only 39% of Americans view national parks as accessible options. There’s a simple fix. (USA Today)
Disney no longer magical to guests denied Disability Access Service Its new policy has been nothing but a headache for the giant resort. (Los Angeles Times)
Sports
Venues fall short on invisible disability needs An ESPN survey finds that professional sports teams have largely moved to accommodate the needs of fans with sensory issues, but many venues still fall short when it comes to addressing a range of other needs for fans living with invisible disabilities. (ESPN)
Entertainment with a Message
‘Patrice: The Movie’ To Premiere On Hulu It documents the relationship of a disabled couple and the marriage penalty they face thanks to limits on their government benefits. (Deadline)
You Love to See It
Cow Tipping Press in Twin Cities Is Changing the Narrative on Disability The publishing house-meets-writing workshop offers three semesters of writing classes for adults with developmental disabilities throughout the year. (Mpls.St.Paul Magazine)
Jacob Burns Film Center’s Upcoming Sensory Friendly Screenings (Enjoy!)
Since January 2024, JBFC Kids at the Jacob Burns Film Center in Pleasantville, N.Y., has been showing sensory-friendly screenings, usually on the first Sunday of every month.
The lights are turned up, the sound is turned down and there are no trailers or advertisements before the movie starts. The audience is encouraged to move around, talk, or make noise as needed. It’s an accepting and accommodating environment where everyone can feel comfortable and enjoy the moviegoing experience.
Schedule (all movies are at 11 a.m.)
Image: A still from the movie Wallace & Gromit: The Curse of the Were-Rabbit, courtesy of Jacob Burns Film Center.
Learn About Rochester Special Ed Parent Advisory Council Monthly Meetings
The Rochester City school district’s Special Ed Parent Advisory Council (SEPAC) monthly meetings are for parents, guardians and caregivers.
They’re held once a month to discuss concerns and to collaborate with the District and outside agencies to discuss and resolve those concerns. It’s also to gain knowledge of the special education process.
The dates are as follows:
Sept. 16, 2024
Oct. 21, 2024
Nov. 18, 2024
Dec. 9, 2024
Jan. 13, 2025
Feb. 10, 2025
March 10, 2025
April 21, 2025
May 12, 2025
June 9, 2025
July 14, 2025
Aug. 11, 2025
Developmental Disability News for Week Ending Aug. 30
Students in special ed disproportionately affected by school closures, PBS NewsHour looks at the housing shortage for people with disabilities, and more developmental disability news for the week ending Aug. 30, 2024.
Spotlight: Education
The Unequal Effects of School Closings
This piece on the Rochester City School District in New York — where school closures have dropped by more than 10% between 2020 and 2022 — tackles a traumatic issue affecting school districts nationwide. I’ve highlighted a few of the points related specifically to special education. (The article was co-published by ProPublica and The New Yorker.)
- The effects of school closings fall hardest on majority-Black schools and special-needs students.
- Critics say that the Rochester district’s long-running Urban-Suburban program, in which students can apply to transfer to smaller, reportedly very selective school districts outside of the city, “helps explain why close to a quarter of the students remaining in the city system qualify for special-education services. (The local charter schools are also selective.)”
- “By the spring of 2024, parents at the 11 schools being closed ‘were too busy trying to figure out where their children would be going in the fall to worry about the long term. [One mother] was upset that School 29’s students with autism were being more broadly dispersed than promised; she worried that her son’s assigned school wasn’t equipped for students with special needs.'”
More Education News
How Much Does Special Education Truly Cost? No one really knows. But now, scholars who work for the U.S. Dept. of Ed’s Institute for Education Sciences (IES) and the American Institutes for Research (AIR) will execute a pilot study to lay the groundwork for a nationwide examination of the billions of dollars spent annually on special ed. (Education Week)
Ending the U.S. Dept. of Ed: What it would mean and why Trump and Project 2025 want it This article is a broad look at the Dept. of Ed plus a few Trump quotes on the matter. (Sample: The federal government could provide “a little monitor. You want to make sure they are teaching English, as an example. Give us a little English, right?”) (Chalkbeat)
The Harris-Walz Vision for Public Schools There aren’t a whole lot of specifics in this, either, although it does mention a focus on public schools, which is where special ed students do best. Hopefully, more policy information will be coming from both presidential candidates including a discussion of students with disabilities, especially given that the number of students in special ed has doubled in the past 45 years. (The Nation)
New York
CDPAP advocates push back against changes to NY home healthcare program (whec.com)
First Suffolk County park specifically designed for inclusivity Other county playgrounds are ADA accessible, but this one will go “above and beyond the minimum requirements” with inclusive design for everyone. (Suffolkcountynews.net)
Outside of New York
NJ announces $3M to boost training of disability aides as group homes face labor crisis Employees of group homes and therapy programs will be eligible for $1,000 apiece to put toward training and certification costs. (northjersey.com)
A sampling of articles covering the nationwide special ed teaching shortage
Stamford, Conn., schools struggling to find special education educators continue to outsource jobs (Stamford Advocate)
Providence, R.I., offering $10,000 salary increase for special-ed teachers (wpri.com)
Majority of Baltimore County Schools vacancies are for special education teachers (The Baltimore Sun)
Autism
‘I don’t want him to go’: An autistic teen and his family face stark choices A look at one family caught up in the “surging numbers of young people [who] have landed in emergency rooms in the throes of a mental health crisis amid a shortage of needed care.” Among those hit hardest by the crisis? Autistic youth. (Los Angeles Times)
Housing
People with disabilities face extra hurdles amid national housing shortage Judy Woodruff reports on the affordable housing shortage for the PBS series, Disability Reframed. (PBS NewsHour)
Health
Voting Rights
In Some States, Having a Guardian Means Not Having a Vote More than a million Americans, many with disabilities, live under a court-approved guardianship. Many states block them from voting. (New York Times)
For more on guardianships and voting in New York, check out The Boost’s Voting Guide, found here.
Vocational Rehabilitation
Feds Tell Voc Rehab Agencies Not To Limit Services To In-State Options New guidance from the U.S. Department of Education’s Rehabilitation Services Administration details how vocational rehabilitation agencies should respond to requests for out-of-state services. (Disability Scoop)
Travel
Practice Flights and Calm Spaces: Making Room for Neurodivergent Travelers Airlines, hotels, theme parks and others are working to ease the challenges of travel for people with autism, A.D.H.D and other “invisible disabilities.” (New York Times)
Paralympics