New York State’s Developmental Disabilities Advisory Council Met This Week: Here’s What Happened
The New York State Developmental Disabilities Advisory Council (DDAC) plays a crucial role in determining the state’s priorities and goals for people with developmental disabilities. While it has no executive, administrative or appointive duties, it does have the following responsibilities:
- Fostering public understanding and acceptance of developmental disabilities
- Advising the commissioner of the Office for People with Developmental Disabilities on matters related to development and implementation of the statewide comprehensive plan
- Advising on any matter related to individuals with developmental disabilities, and on policies, goals, budget and operation of developmental disabilities services.
The council, FYI, consists of 36 board members and the OPWDD commissioner, to whom it gives its recommendations. Three of its board members are appointed by the governor and include providers, family members and self-advocates. Three are representatives from state agencies (ex-officio).
The DDAC’s many subcommittees meet regularly, and the council is also required to hold quarterly meetings to keep the public informed of its work, and to give people a chance to comment and air their concerns. Its last quarterly meeting, which The Boost attended, was held this past week on Tuesday, Dec. 3, 2024. These meetings are recorded, and can be found on YouTube. (This past meeting was not yet posted as of press time.)
Here are the highlights.
Acting OPWDD Commissioner Willow Baer Starts Things Off
Baer gave updates on several programs and positions.
- The Independent Developmental Disability Ombudsman Program: Baer noted that the state’s new IDD Ombudsman Program will be ready to launch by the end of 2024. The program, FYI, is designed to provide independent, conflict-free Ombudsman services to assist individuals with developmental disabilities and to preserve their rights.
- Director of Advocacy: The new position will start in early 2025.
- Housing: A list of projects that can stabilize the housing crisis in the short-term “using existing resources and workloads” has been prioritized, according to Baer. This includes using IT to help process vacancies, reducing the administrative burdens for providers, and the creation of educational materials. “Obviously, there is a lot more to do in the long-term,” she said.
- Managed Care: Baer reiterated that a report from the advisory consultancy firm Guidehouse, hired to evaluate a potential transition to managed care or another payment model that aligns with OPWDD’s strategic goals and objectives, recommended that the state not transition to managed care.
Next Up: The Access Rule
This past April, the Centers for Medicare & Medicaid Services issued its Final Rule on Ensuring Access to Medicaid Services, commonly referred to as the Access Rule. The DDAC notes that the transition is in the works, with CMS guidance coming out in early 2025.
Subcommittee Reports
DDAC subcommittees consider matters related to the various populations served, and programs certified by the office, as well as other matters including planning, fiscal and consumer affairs. Membership may consist of both council and non-council members that reflect a diverse group of stakeholders from across the state, each with co-chairs that are members of the DDAC, with the exception of the Family Support Services (FSS) Council, which operates under its own legislative authority.
The meeting heard from the following committees:
- Residential
- Children’s Services
- Health & Wellness
- Complex Care
- Employment and Meaningful Activities
- Self-Direction
- Systems, Quality, Data and Service Delivery
- FSS
Not a lot was covered! Moving on!
And…DDAC Member/Former NYS Rep Tom Abinanti Has a Question
Before the floor was opened up to public comments, Abinanti wondered how neglect and abuse in group homes was being addressed. His question: Which committee does a concerned parent go to to discuss these issues?
The answer: It doesn’t really fit into any committee, but the executive committee “can take a look at that” and see where it best fits, and then discuss with OPWDD.
Public Comments
This is the time in which people can air issues and concerns. While not many people spoke up, and protocol is for DDAC not to respond and/or comment, it’s potentially a powerful way to let the council know what’s on people’s minds and what it should consider prioritizing.
So, please consider attending the next quarterly meeting, which is being held in 2025. It’s not yet posted, but keep an eye out for the date here.
New Lego Sets Put Hidden Disabilities Front and Center
Playing with interlocking plastic bricks just got more inclusive.
The Lego Group, family run since 1932, has partnered with Hidden Disabilities Sunflower (HDS), an international program that provides free Sunflower lanyard necklaces that discreetly indicate who might need additional support at airports, shops and other public spaces.
RELATED NEWS: Travel Better with the Hidden Disabilities Sunflower Program at New York-Area Airports
The partnership has resulted in three new Lego sets that promote awareness and inclusion for people with non-visible disabilities, conditions and sensory needs. It’s also being used to better support Lego employees.
One of the Lego sets, for ages 2+, is centered on an airport and includes a child with a Sunflower lanyard. Another airport set, for ages 8+, features a university student wearing noise-reducing headphones and a lanyard. The third, for ages 18+, is the latest in the modular building range and includes a neurodivergent female character who also uses the lanyard.
Additionally, mini-figures using the Sunflower symbol can be customized at select Lego stores, Discovery Centers and more.
Have a Seat at the Table: Your Feedback Is Wanted by OPWDD
A survey focused on the state of New York’s Self-Direction program and a listening session to help advance diversity, equity and inclusion within the Office for People with Developmental Disabilities (OPWDD) want to know how stakeholders, from families and caregivers to self-advocates, feel and interact with intellectual and developmental disability services and how they’re delivered.
They’re important opportunities to help shape the Self-Direction program, and the ways in which people access and navigate OPWDD services.
The Self-Direction Survey: Deadline Jan. 6, 2025
OPWDD is working with Guidehouse, an advisory and consulting firm, to review its Self-Direction model. The Guidehouse survey is not just for those utilizing Self Direction, but those who have considered it, or are considering it. It contains a series of questions and opportunities to comment. Guidehouse will then collect the feedback and provide recommendations on ways to improve the model.
RELATED NEWS: Self Direction and Community Classes in NYS: Know Your Rights
You’ll find the survey here, as well a contact for questions.
As part of the review, Guidehouse and OPWDD are also using town hall meetings and focus groups to collect and share information.
Diversity & Inclusion Family Listening Sessions: January 2025 & February 2025
The state of New York is working with the Georgetown University National Center for Cultural Competence (NCCC) to help advance diversity, equity and inclusion within its Office for People with Developmental Disabilities (OPWDD).
As part of this initiative, NCCC will lead Family Listening Sessions on Zoom and by telephone for families, caregivers and self-advocates in January and February. They will focus on people’s experiences in accessing supports and services:
- based on your family’s cultural beliefs and practices,
- in your preferred language, and
- that are appropriate and fair for your family member with IDD.
NCCC will pass this information along to OPWDD. Your name will not be included in any of your comments. Sharing your thoughts and experiences will help OPWDD and its providers improve supports and services for persons with IDD.
Registration
To ensure accessibility, the sessions will be offered:
- In English and the 12 languages
- In American Sign Language (ASL).
Participants will receive a $25 electronic gift card (one per family) to honor their time.
For more information or assistance email OPWDDlistens-NCCC@georgetown.edu.
More Developmental Disability News for Week Ending Dec. 6, 2024
The Biden administration moves to end the minimum wage waiver for disabled workers, a disability policy champion’s time in Congress comes to an end, and more developmental disability news for the week ending Dec. 6, 2024.
Spotlight: CDPAP
N.Y. lawmakers: Let Medicaid home care contract issues play out in court
State lawmakers said they do not have plans to investigate the state’s controversial process to award a $9 billion contract for the Consumer Directed Personal Assistance Program (CDPAP), a Medicaid home care program, and that accusations that Gov. Kathy Hochul’s administration rigged the bidding war should be left to the courts.
The response comes after U.S. Rep. Ritchie Torres, a Bronx Democrat, sent a letter to state Inspector General Lucy Lang and the inspector general of the U.S. Department of Health and Human Services, requesting a probe into how Gov. Kathy Hochul’s administration handled the contract. (nystateofpolitics.com)
N.Y. accused of rigging major Medicaid contract in lawsuit from home care company In the latest of several lawsuits, Freedom Care LL claims it was passed over for a contract to manage the Consumer Directed Personal Assistance Program (CDPAP) in a rigged bidding process. (Times Union)
New York
NYC asks private school families to waive their right to sue in exchange for special education services Thousands of private school students with disabilities this year missed out on city-funded special ed services to which they’re entitled under law due to an unexpected crackdown on a deadline this past summer. (Chalkbeat.org)
NY preschoolers are often not receiving special ed services A state comptroller’s audit found that preschool students across New York are not always receiving necessary special education services or getting that help late. (Times Union)
State faces class-action lawsuit over number of group home placements for people with disabilities A federal judge has allowed a lawsuit over the (low) number of available group home placements in Western New York, first filed on behalf of several families in 2016, to move forward as a class action. (Buffalonews.com)
Long-awaited report on updating NY school funding formula calls for ‘significant change’ The recommendations establishes more nuanced calculations for funding based on students with disabilities, among other changes. (Chalkbeat.org)
Saratoga County launches Blue Envelope Program for drivers with autism (cbs6albany.com)
White Plains installs inclusive swing at Delfino Park (hudsonvalley.news.12.com)
Students with disabilities learn real-world job skills in Brooklyn high school’s sewing lab (k12dive.com)
Outside of New York
Maine, Justice Department enter settlement to improve services for children with disabilities It requires the state to increase community-based behavioral health services for children. The lawsuit was filed earlier this year. (AP)
North Canton, Ohio, home for developmentally disabled children to be built despite neighbors’ disapproval Another infuriating example of “not-in-my-neighborhood” ignorance — with a happy ending. (news5cleveland.com)
Education
Ed Department May Require Schools To Report ‘Informal Removals’ Of Kids With Disabilities Federal officials are eyeing changes to the types of information that schools nationwide must report about the experiences of students with disabilities. (Disability Scoop)
Ed Department promotes expanded use of behavior assessments It also support plans for students to help schools address problem behaviors and reduce suspensions and expulsions. (K12dive.com)
Employment
U.S. Moves to End a Minimum Wage Waiver for Disabled Workers The Biden administration moved to end the statute that lets employers obtain certificates from the Labor Department that authorize them to pay workers with disabilities less than the federal minimum wage. (New York Times)
Congress
A disability policy champion’s time in Congress has come to an end Pennsylvania Sen. Bob Casey Jr., who lost his Senate race, introduced dozens of bills to advance civil rights and quality of life for people with disabilities., including the ABLE act. (19thnews.org)
Opinion
Commentary: How will the Trump administration advance disability rights? (Times Union)
Entertainment
Disney+’s ‘Out of My Mind,’ Bleecker Street’s ‘Ezra’ Among Honorees for Authentic Portrayals of Disabled Communities (Variety)
NYS Rec & Entertainment Starting Nov. 29, 2024
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here. It would be great to have more activities around NYS.
REC & ENTERTAINMENT
Mon., Dec. 2, 2024: Hear Our Voices Book Club: Social group for young adults of all reading levels. Includes book-ish games, talk about favorite reads, and discover new books with all types of disability representation. There’s no required reading to join each meeting. See registration for additional dates.
Thur., Dec. 5, 2024 and Fri., Jan, 3, 2025: Bronx Zoo Holiday Lights Sensory-Friendly Night: Includes reduced capacity, adjusted light effects, sensory bags and more.
Fri., Dec. 6, 2024: Mom’s Night Out at Breakthrough Fit in Hartsdale, N.Y.: A night of yoga and wine for moms while kids are upstairs doing activities and eating pizza. 6:30 p.m. to 8:30 p.m. Cost: $45.
Sat., Dec. 7: Moana 2: Bedford Playhouse Sensory-Friendly Screening: Located in Bedford, N.Y.
Sun., Dec. 8, 2024: The Nightmare Before Christmas: Jacob Burns Film Center’s Sensory Friendly Screenings: Located in Pleasantville, N.Y.
Sun., Dec. 15, 2024 and Sat., Jan. 11, 2024: NY Botanical Garden Holiday Train Show Sensory Friendly: Sensory Friendly Mornings for a calmer visit to the Holiday Train Show. Additionally, ticket provides access to NYBG’s outdoor gardens and collections.
Thurs., Dec. 19, 2024:
Sun., Jan. 5, 2024: New York City Ballet Sensory-Friendly George Balanchine’s The Nutcracker®: Slight modifications include adjustments to lighting and sound levels, designated break areas and additional event staffing to assist with audience needs.
Year-Round:
The Boost’s Guide to the Best Museums for People with Developmental Disabilities
The Boost’s 2024 Westchester County Recreation Resource List (Children and Adults)
Photo: Freepik.com
A Nationwide Teacher Shortage, Linda McMahon, and More: The Boost’s Special Ed Roundup
Special education was all over the news this week.
Starting in New York City, a survey from the United Federation of Teachers found nearly 9,000 students with disabilities are not receiving their mandated services across 474 schools. The main culprit? A shortage of paraprofessionals.
The special ed teacher shortage is a nationwide crisis, with some 70% of schools surveyed by the National Center for Education Statistics reporting special ed teacher vacancies in the 2023-24 school year. Which is why the U.S. Commission on Civil Rights held a panel this week to discuss how the shortage hurts both the academic growth and due process rights of students with disabilities.
There were some articles as well on how a Trump administration could affect special education. There’s a lot of conjecturing, but he did leave a trail of clues from his first term that makes the guesswork easier. For instance, as NY Focus reports below, Trump’s return could pose risk to the Department of Education’s Office for Civil Rights, the arm of the agency responsible for investigating claims of discrimination at schools and universities across the country.
The bigger education picture is also anxiety-provoking: The president-elect’s nominee for the Dept. of Ed, a department he has said he wants to dismantle, is a highly controversial pick: Wrestling magnate Linda McMahon. McMahon has no actual teaching experience, and had resigned from her only education-related position after it was discovered she had lied about having bachelor’s degree in education. She was also named in a recent child sex abuse lawsuit.
Lastly, a new report on charter schools is one of the most positive The Boost has seen in terms of special education, noting that some (albeit a small number) have met the needs of disabled students.
Let’s get to it.
Special Ed Staffing Shortages
NYC special ed staffing shortage leaves students in limbo, teachers union charges A complex hiring process and low pay (a starting salary “just shy of $30,000) make it difficult to recruit and retain staff. (Chalkbeat.org)
Special ed staffing shortages put students’ futures at risk. How to solve that is tricky. (Chalkbeat.org)
Special education in NYC public schools is ‘broken,’ teachers union says (Gothamist)
Facing special education workforce shortage, Oregon to give special education teachers, paraeducators one-time stipends (Oregonlive.com)
The SPARC of an idea: Researching the special education workforce Thanks to a $5 million investment by the National Center for Special Education Research and the U.S. Dept. of Education, a Binghamton University professor will spend the next five years helping to develop the “Special Education Workforce: A Research Collaborative (SPARC) Center” — evaluating the composition, distribution, effectiveness and stability of the special education workforce. (Binghamton.edu)
Commission on Civil Rights probes special educator shortage (K12dive)
At Special Ed Teacher Shortage Hearing, Panelists Debate Dismantling Ed Dept. (The 74 Million)
Trump & Special Ed
What Trump’s Second Term Could Mean for New York Schools Regardless of whether the Dept. of Education closes, Trump can seek to limit federal aid to schools — something he repeatedly tried to do during his first term. The proposed federal cuts are coming just as New York begins to reevaluate Foundation Aid, the formula used to distribute most state funding to public schools. (NYFocus.com)
How Trump’s Policies Could Affect Special Ed (Education Week)
Dept. of Ed Nominee Linda McMahon
Trump’s Education Secretary Pick Named in Sexual Abuse Lawsuit (New York Times)
Linda McMahon Lying About Education Degree ‘Disqualifying’: Attorney (Newsweek)
What Linda McMahon is likely to prioritize as education secretary under Trump (PBS.org)
Charter Schools
Report: Charters’ Flexibility Can Enable Better Outcomes for Disabled Pupils Adding to the slender but growing body of research regarding outcomes for students with disabilities, the Center for Learner Equity has released a report describing innovative strategies 29 diverse charter schools and school networks have created to meet their needs. (The 74 Million)
NYS Rec & Entertainment Starting Nov. 22, 2024
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here. It would be great to have more activities around NYS.
REC & ENTERTAINMENT
Sat., Nov. 23, 2024: AbleBloom 2024 at the Scarsdale Library: An arts and performance showcase and an autism research and education presentation. (Project Ready)
Mon., Dec. 2, 2024: Hear Our Voices Book Club: Social group for young adults of all reading levels. Includes book-ish games, talk about favorite reads, and discover new books with all types of disability representation. There’s no required reading to join each meeting. See registration for additional dates.
Thur., Dec. 5, 2024 and Fri., Jan, 3, 2025: Bronx Zoo Holiday Lights Sensory-Friendly Night: Includes reduced capacity, adjusted light effects, sensory bags and more.
Fri., Dec. 6, 2024: Mom’s Night Out at Breakthrough Fit in Hartsdale, N.Y.: A night of yoga and wine for moms while kids are upstairs doing activities and eating pizza. 6:30 p.m. to 8:30 p.m. Cost: $45.
Sat., Dec. 7: Moana 2: Bedford Playhouse Sensory-Friendly Screening: Located in Bedford, N.Y.
Sun., Dec. 8, 2024: The Nightmare Before Christmas: Jacob Burns Film Center’s Sensory Friendly Screenings: Located in Pleasantville, N.Y.
Sun., Dec. 15, 2024 and Sat., Jan. 11, 2024: NY Botanical Garden Holiday Train Show Sensory Friendly: Sensory Friendly Mornings for a calmer visit to the Holiday Train Show. Additionally, ticket provides access to NYBG’s outdoor gardens and collections.
Sun., Jan. 5, 2024: New York City Ballet Sensory-Friendly George Balanchine’s The Nutcracker®: Slight modifications include adjustments to lighting and sound levels, designated break areas and additional event staffing to assist with audience needs.
Year-Round:
The Boost’s Guide to the Best Museums for People with Developmental Disabilities
The Boost’s 2024 Westchester County Recreation Resource List (Children and Adults)
Photo: Bronx Zoo
More Developmental Disability News for Week Ending Nov. 22, 2024
Special ed forecasts, a study shows equal pay for disabled workers actually creates jobs, and more developmental disability news for the week ending Nov. 22, 2024.
New York
NYS officials talk FY 2026 Budget State spending on Medicaid could grow by $23 million this year and reach $35 billion by 2026, passing its statutory cap by $2.2 billion that year. (Rochesterfirst.com)
New York families, therapists say new Early Intervention Program hub is causing service problems (CBSnews.com)
First “Child With Autism” street sign placed in Schenectady (News10.com)
Supportive housing opens in Bronx for adults with developmental disabilities (Bxtimes.com)
Outside of New York
Newark Public Schools taps Planned Parenthood to teach sex ed, health care to students with disabilities (Chalkbeat.org)
Justice Dept. Sues Pa. Over Discriminatory Code Requirements that Restrict Community-Based Housing for People with Disabilities The issue is expensive automatic sprinkler systems that similar resident housing is not required to have. (Justice Dept. press release)
N.H. school districts face major special ed funding shortfall The state’s special ed aid fund – which assists school districts with unexpected costs – doesn’t have enough money to make up the difference. (Newhampshirebulletin.com)
Maryland disability advocates say new state policies will burden caregivers with paperwork Families who oversee self-directed care say new rules were rushed through without adequate public input. (Marylandmatters.org)
Recent graduates with intellectual disabilities find employment at South Carolina hotel Around 30% of the staff have an intellectual disability. Workers make between $13 and $18 per hour including tips — far above the federal minimum wage of $7.25 per hour. (CBSnews.com).
Education
What Trump’s Second Term Could Mean for New York Schools Regardless of whether the Dept. of Education closes, Trump can seek to limit federal aid to schools — something he repeatedly tried to do during his first term. The proposed federal cuts are coming just as New York begins to reevaluate Foundation Aid, the formula used to distribute most state funding to public schools. (NYFocus.com)
NYC special ed staffing shortage leaves students in limbo, teachers union charges A complex hiring process and low pay (a starting salary “just shy of $30,000) make it difficult to recruit and retain staff. (Chalkbeat.org)
Commission on Civil Rights probes special educator shortage (K12dive)
How Trump’s Policies Could Affect Special Ed (Education Week)
Special ed staffing shortages put students’ futures at risk. How to solve that is tricky. (Chalkbeat.org)
Medicaid
What to know about Dr. Oz, the TV physician Trump tapped to run Medicaid and Medicare (Washington Post)
How Trump’s second term could change Medicaid While Trump has distanced himself from Project 2025, many of its recommendations overlap with the Republican Party’s adopted platform, which suggested deep cuts to the $800 billion program. (Pluribusnews.com)
Disability Advocates Sound Alarm Over Possible Medicaid Cuts (Disability Scoop)
Money
A cutting board costs me $75 – it might cost you $10. What to know about the ‘disability tax’ (TheGuardian.com)
Vocational
Study: Equal Pay for Disabled Workers Creates, Not Costs, Jobs The study found that in two states that banned the subminimum wage, employment rates for adults with I/DD either increased or didn’t change when employers had to pay them an equal wage. (Motherjones.com)
Autism
Experts offer tips for navigating Thanksgiving with children on the autism spectrum (news3lv.com)
Products
Nike’s new easy-open backpack was designed to prioritize accessibility The new Elite EasyOn backpack was designed with innovative features making it accessible for as many athletes as possible, including those with low dexterity or motor skills. (The Verge)
Entertainment
She got seizures at 17 months old. So her dad wrote a musical about epilepsy and empathy (Los Angeles Times)
Family Caregivers Experience a World of Hurt: Survey
Physically and mentally demanding. Limited resources. Medicaid payments that are lower than earnings from other work.
These are just a few of the findings from a new survey from KFF on the experiences of direct care workers and family caregivers of Medicaid-supported Home- and Community-Based Services (HCBS).
Released just before the election that puts Donald Trump back into the White House for a second term, the survey comes at a critical time. The GOP will have a firm grip on a legislative branch with little interest in going up against Trump, smoothing the way for an agenda that seemingly will work against efforts to help vulnerable populations.
KFF notes that during his first term, Trump “supported unsuccessful efforts to repeal and replace the ACA, including the Medicaid expansion, and proposed restructuring Medicaid financing into a block grant or a per capita cap as well as limiting Medicaid eligibility and benefits. These proposals, included in Trump budget plans as president, were estimated to reduce federal Medicaid spending by roughly $1 trillion over 10 years.”
Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network, told Disability Scoop that “based on actions taken during the first Trump administration, we are concerned with what [the] election will mean to the funding and structure of many important programs for people with disabilities like Medicaid, [Individuals with Disabilities Education Act] funding, enforcement of civil rights laws, among others.”
Here are some of KFF’s survey key points:
- Parents with children who are medically complex or have significant physical, mental, or intellectual disabilities are often required to provide what the Centers for Medicare & Medicaid Services (CMS) describes as “extraordinary care [which can be necessary] for children to avoid being placed in an institution.
- Parents shared fears about what caring for their children would look like in the future, especially as the parents themselves aged.
- Many started caregiving because they were the only person available to help.
- Some participants have difficulties balancing work with other responsibilities, especially to their own families.
- They also described difficulties balancing caregiving responsibilities with self-care.
- Many family caregivers did not have paid caregiving help.
- Most caregivers thought that higher wages would require additional Medicaid funding, but some caregivers reported that they felt a higher share of Medicaid spending could go to wages for direct care workers.
KFF reports that “a recently finalized rule under the Biden-Harris Administration aims to address the latter issue: Starting in 2028, states will be required to ensure that at least 80% of Medicaid payments for personal care, homemaker, habilitation, and home health aide services go to compensation for direct care workers.”
Read the full survey, Experiences of Direct Care Workers and Family Caregivers of Home- and Community-Based Services (HCBS), for more details.
NYS Webinars, Resource Fairs & More Starting Nov. 22, 2024
Be sure to visit links for more information and, where applicable, to register. If you’d like to share your event or activity on The Boost, please contact us here.
OPWDD PUBLIC MEETINGS
Tues., Dec. 3: Developmental Disabilities Advisory Council
Wed., Dec. 4: Family Support Services Council
WEBINARS
Tues., Dec. 3, 2024: Navigating OPWDD through transition: Overview of OPWDD services including the application process, appeals, and supports and post-school. (Includenyc)
Tues., Dec. 10, 2024: Understanding Self-Direction: Learn what Self-Direction is and the many benefits it can offer. (Parent to Parent NYS)
SCHOLARSHIPS & AWARDS
2025 Fred J. Epstein Youth Achievement Awards: Nomination deadline is Jan. 15, 2025: The awards from Smart Kids with Learning Disabilities® recognizes the outstanding accomplishments of young people with LD and ADHD who make a lasting impact on their schools and communities.
Photo: Explore keeping fit with Hear Our Voices! (Credit: Pexels.com)