Intellectual and Developmental Disability News

Urgent Call to Action: Ask OPWDD to Withdraw Its Self-Direction Draft Proposal Today

The Supporting Our Youth & Adults Network (SOYAN) and Coalition for Self Direction (C4SD) have put out  urgent calls to action regarding Self Direction and the lack of transparency over the community classes category.

They note that OPWDD has put out an Administrative Directive Memorandum for comment on community classes that  delegate will delegate power to Fiscal Intermediaries (FIs) to “regulate” community classes following unwritten guidance and limit an individual’s right to choose their own supports and services and ignores person-centered planning.

You can read replies from the Supporting Our Youth & Adults Network (SOYAN) for background. The C4SD remarks came as an attachment and are not included, though bullet points from both SOYAN and C4SD are below.

What to do

The deadline is EOD Thursday, April 25. Please email your comments Wednesday, April 24 and/or Thursday, April 25 to two addresses: rau.unit@opwdd.ny.gov (OPWDD’s Regulatory Unit) and self.direction.redesign@opwdd.ny.gov (the Self-Direction Redesign Team).

You do not need to write a formal cited reply. Instead, you can copy and paste the below.

The OPWDD must rescind the the Self Direction ADM and consider creating a collaborative working group composed of OPWDD leadership, Self-Direction participants, family members and representatives from FIs to review the current Self-Direction Guidance. The four main points are:

  1. The proposed ADM fails to safeguard the due process rights of Self-Direction participants seeking reimbursement for IDGS, OTPS and FRR that align with their Life Plan.
  2. The proposed ADM would relinquish OPWDD’s oversight of its vendors: the Fiscal Intermediaries. Its requirement that FIs become members of “communities of practice” does not ensure that their decisions are in alignment with OPWDD and CMS regulations and guidance documents. Further, it ignores the potential for FIs to have a conflict of interest by denying access to community based activities and rather, promoting  their agency’s in-house day programs.
  3. This added authority is beyond the scope of FIs’ role within the confines of the HCBS 1915c Waiver.
  4. Community class (Community Classes & Publicly Available Training/Coaching) criteria need to be reevaluated. Subjective rules have been applied restricting choice, access to meaningful community-based experiences that are consistent with the individual’s Life Plan, goals, needs and preferences. This deliberate and finite authority to approve/disapprove an individual’s chosen IDGS community activity that aligns with their Life Plan is neglectful by OPWDD.

Life-Skills Workshop Series for Caregivers: April 23

Life skills, or daily living skills, are abilities that people with intellectual and developmental disabilities (I/DD) need to achieve their highest level of independence. These include skills related to managing money, personal hygiene, medication management, taking care of living spaces, laundry, cooking, transportation and shopping.

Westchester Institute for Human Development’s Community Support Network is running this virtual three-series workshop for caregivers about supporting life-skills learning for children, teens and young adults with I/DD.

You’ll need to come to the workshop with at least one idea for a life skill that you want your loved one to work on.

The series will cover:

Details

When: Tuesday, April 23, 2024; Workshop #2 is scheduled for May 23, Workshop #3 for June 25. (Check back on the WIHD calendar of events for details.)

Time: 6:30 p.m. to 8 p.m.

Register here

Preventing Parent Burnout for Parents of Children with Special Needs: April 24

Extraordinary parenting responsibilities create extraordinary pressures on parents. At the same time, parenting a child with special needs requires energy, focus, and enthusiasm to be effective in our role. The better off we are emotionally and physically, the better off our families will be.

Join Parent to Parent of NYS for this webinar on Preventing Parent Burnout and discover positive ways to cope with and effectively manage stress.

Details

When: Wednesday, April 24, 2024

Time: 7 p.m. to 8 p.m.

Register here

Photo: Unsplash

Be Part of the First-Ever ‘Hear Our Voices’ Self-Advocates Conference on May 16

Many of us take self-advocacy for granted. We speak out, voice concerns, share our needs and fight for our rights, and have since we were kids. Yet people with developmental disabilities are rarely taught or given the space to pick up on the communication and negotiation skills needed to self-advocate. In part it’s because society ignores their needs and wants, and because even well-meaning caregivers teach them not to expect too much.

Enter Hear Our Voices. Since 2018, this monthly virtual self-advocacy group — part of Westchester Institute of Human Development’s Community Support Network — does just that. It gives people with developmental disabilities the tools they need to help achieve their goals in areas ranging from employment and housing to community integration, and also serves as an opportunity to develop and grow social connections.

Hear our voicesNow, Hear Our Voices is expanding its reach with its first-ever statewide Self-Advocates Conference, open to anyone interested in self-advocacy as well as their allies.

“It’s important to make Hear Our Voices a statewide [group] because there aren’t a lot of self-advocates out there,” says Brendan Klein, president of Hear Our Voices and coordinator of Self Advocacy & Community Engagement at WIHD. “We want to change that.”

The free, virtual event, which is also being run by people with disabilities, will feature speakers with disabilities in each session. The topics range from neurodivergent-friendly mental health and eating disorder care, to highlighting non-verbal voices and an exploration of supported decision-making as an alternative to guardianship. Klein says they’re aiming for some 300 participants, including some state legislatures.

The keynote presentation, “Tell Your Story to Be a Change Agent,” is being given by BJ Stasio, a disability rights advocate from Buffalo who’s co-vice president of the Board of Directors of the Self-Advocacy Association of New York State (SANYS); and Chester Finn, a nationally recognized disability advocate who’s special assistant with OPWD who had been appointed by former U.S. President Barack Obama to serve two terms on the board of the National Council on Disability (NCD).

The goal, says Klein, is to grow and learn together.

“In the end, we hope more people will join Hear Our Voices,” says Klein. “If they’d like to join the team, we’d love to have them!”

Details

When: Thursday, May 16, 2024

Time: 10 a.m. – 4 p.m.

Register here

Do Microschools Work for Students with Developmental Disabilities?

Microschools, a loosely defined category of schooling — descriptors range from small learning environments to outsourced homeschooling — are having a moment. The model took off during the pandemic and now serves between 1 million and two million students, according to a rough estimate from Edchoice.org. They tend to convene in commercial or nonprofit spaces, private homes, houses of worship and other creative locations.

It’s unclear how many microschools have popped up across the country. There’s no single database, for instance, tracking those operating in New York and/or in the TriState area. (A Google search brings up a decent selection.)

There is data, however, on how many students with disabilities are being taught via this model. A recently released report finds that 63% of currently operating microschools draw students considered neurodivergent; 53% serve students with other special needs; and 53% those whose educational attainment upon arrival is two or more grades below their chronological grade level.

The study, which covers a variety of areas related to the movement, is called the American Microschools: A Sector Analysis. It was produced by the National Microschooling Center, an organization committed to the microschool movement, which surveyed 400 microschool founders in 41 states.

RELATED NEWS: Letting vouchers fund Indiana microschools could spur innovation, but also a fight for cash

The study’s results were expertly parsed by the74million.org in the article Microschools Fill Niche for Students with Disabilities, Survey Shows, which is recommended reading. It reports that some families are searching out these small programs to help children falling through the education cracks, and  features one family thrilled with the advances they’re seeing in their child. But it also notes some major caveats.

“Like all private schools, microschools don’t have to accept students with disabilities or provide the same services as public schools, putting some parents who might otherwise take advantage of school choice in a tough spot,” it explains. Also, as private schools they have no legal obligation to serve children with developmental disabilities.

“Critics of ESAs and other voucher-type programs stress that students’ rights under the federal Individuals with Disabilities Education Act aren’t guaranteed once they leave the public schools,” it adds. This means, for instance, in most cases there’s no right to due process.

RELATED NEWS: In Pandemic’s Wake, Learning Pods and Microschools Take Root

An article published last year in Youth Today, a national, nonprofit, independent news source, also points out red flags while simultaneously noting that microschools in many ways embody the ideal of the federal Individuals with Disabilities Education Act.

“You look at each child, you provide the services and support, and you deliver the education in a way that the child can access it, and that’s wonderful,” said Lauren Morando Rhim, executive director of Center for Learner Equity. “Where it becomes more complicated is when the child needs more services,” such as specialized instruction for dyslexia or speech or occupational therapies.

And while students with disabilities might have a lot to gain from the small learning programs, they also might have the most to lose, added Travis Pillow, a senior writer at the Center on Reinventing Public Education, as most are not required to follow federal laws protecting students with disabilities, don’t provide enough resources to support them and let them fall behind.

Some public school advocates also fear school choice could financially devastate public schools, cutting into the services students with disabilities need to thrive.

Stay tuned for more updates on the microschool movement. If you’ve had any experience with one, we’d love to hear about it! You can contact The Boost here.

Highlights of the American Microschools Study

More Developmental Disability News for Week Ending April 20, 2024

The Special Olympics come to West Point, Pennsylvania works to eliminate its waitlist for disability services, the best car toys for kids with autism and more developmental disability news for the week ending April 20, 2024.

New York

West Point to host Hudson Valley Spring Special Olympics 600 athletes will compete on April 20. (timesunion.com)

Mount Pleasant fires back, sues nonprofit JCCA to keep migrant children from shelter (lohud.com)

School claims disability rights’ group unqualified for investigation Shrub Oak Int. claims that investigators from Disability Rights New York have asked “inappropriate” questions. (Timesunion.com)

Opinion: New York must do more to support formerly incarcerated individuals with a disability Cognitive disabilities affect about one-fourth of incarcerated people. (Empirereportnewyork.com)

FYI, the WIHD Community Support Network newsletter reminds us that the state’s Fiscal Year 2024 Budget included funding for OPWDD to establish an ombudsman program run by a single entity. Request for Proposals were submitted early in the year, and awards will be issued later this spring.  

Outside of New York

Pennsylvania Gov. Shapiro aims to eliminate waitlist for services for adults with intellectual disabilities He’s starting by boosting the salaries of employees who work with the intellectually disabled through nonprofit service agencies.

Interview: Minnesota’s groundbreaking push for teacher training on ableism Minnesota will soon enact a first-of-its-kind law promoting teacher training on ableism and the history of the disability justice movement. (Minnpost.com)

College

InclusiveU celebrates decade of creating ‘a home’ for students with disabilities The Syracuse University initiative is part of SU’s School of Education. (The Daily Orange)

Europe

Campaigners Seek EU-Wide Ban on Forced Sterilisation of People With Disabilities (usnews.com)

Autism

Best Car Toys for Kids with Autism Road & Track has assembled a list of car-related toys specifically for kids with sensory sensitivities. 

Opinion: Schools Are Killing My Son’s Autism Support Under the Veil of Equity  (Newsweek)

These identical twins both grew up with autism, but took very different paths (npr.org)

Swifites

How Taylor Swift’s Music Is Teaching Social-Emotional Skills To These Pennsylvania Special Ed Students Rock on. (Disability Scoop)

Orange-Ulster BOCES 2024 Transition Fair: April 25

If you have a child with a developmental disability and are planning your child’s future, this is a great place to connect with representatives from service agencies that can provide continued support with transitioning out of high school.

Agencies can provide assistance in the following areas and more:

Details

When: Thursday, April 25, 2024

Time: 1:30 p.m. to 2:30 p.m. & 3 p.m. to 5 p.m.

Where: Emanuel Axelrod Education Center, Goshen, N.Y., 10924

For more information contact Veronique Dietrich at veronique.dietrich@ouboces.org or 845-291-0200, ext. 10250.

Westchester County Transitions Linkage Fair: May 6

The 19th Annual Westchester County Transitions Linkage Fair is a free event is for parents, educators and advocates to learn more about adult services and transition planning.

You’ll have the opportunity to visit with representatives from over a whopping 45 vendors serving Westchester County for information on:

Details

When: Monday, May 6, 2024

Time: 4:30 p.m. to 7:30 p.m.

Where: Westchester County Center, 198 Central Ave., White Plains, N.Y., 10606

Parking: Event parking is $8; street parking is free or metered

Registration: Pre-registration is not required

Questions?: Contact Debbie Goddard (914) 493-8119, dgoddard@wihd.org; Matthew Faulkner (914) 995-5253, Mqf3@westchestercountyny.gov.

Developmental Disability News for Week Ending April 13, 2024

New Yorkers come out fighting for CDPAP, changes come to SSI, Disney changes its disability access program and more developmental disability news for the week ending April 13, 2024.

Spotlight: Employment

I’ve been curious/skeptical about sunny news reports showing employment rates for working-age people with disabilities have hit record highs, in part because I know so many people with developmental disabilities struggling to find jobs and because, when broken down, the numbers vary so much by state.

So, I was interested to see the study Disability, Immigration, and Postpandemic Labor Supply, which came across my desk via the Disability Debrief newsletter. It finds that “the increase in the disabled labor force largely reflects a change in self-reported disability status among those already in the labor force rather than an actual increase in labor supply.”  Interesting! You can read more about the study here.

New York

Opinion: New York must invest in people with disabilities An articulate, impassioned plea for a COLA for Direct Support Professional nonprofit providers and a DSP Wage Enhancement. (NYNMedia)

Podcast: NYC students speak out about special education (Chalkbeat)

New York & CDPAP

Critics furious over Hochul, Heastie plan to crack down on NY’s $8 billion home care Medicaid program: ‘Recipe for corruption’ (New York Post)

Opposition to a single fiscal intermediary grows among disability rights community (nystateofpolitics.com)

Home Care, Consumer Groups Oppose Eliminating Fiscal Intermediaries Caring for the Elderly and New Yorkers with Disabilities across the State (Release posted by Empire Report)

Advocacy: Disability advocates condemn budget proposal to enrich an out-of-state corporation at the expense of the Disability community  (empirereportnewyork.com)

SSI

Social Security: Food assistance no longer counted when calculating SSI benefit Starting Sept. 30, 2024, that is. The change is the first of several updates being put in place. (CNBC)

Down Syndrome

Exercise May Boost Cognition In Adults With Down Syndrome This small study finds that walking three times a week for 30 minutes could prompt meaningful improvements in cognitive activity within weeks. (Disability Scoop)

Parks

Disney changes its Disability Access Service (DAS) program: What to know Walt Disney World/Disneyland are changing their policies for guests with disabilities. (It also threatens lifetime ban for those who lie during DAS registration.) (USA Today)

You Love to See It

Nonverbal Swimmer With Autism Has Shot At Paralympic Games In Paris (Disability Scoop via nj.com)

Administration

President Biden’s Remarks on the Care Economy He renewed his commitment to long-term care and family caregiving, a national Paid Family and Medical Leave Program and more.

‘Hello Inclusion’ Music Festival Comes to Bethel, N.Y.: July 12

In celebration of Disability Pride Month, Daniel’s Music Foundation and Bethel Woods Center for the Arts will be hosting a one-day inclusive music festival on the historic grounds of Woodstock 1969.

“Hello Inclusion: A Festival of Possibilities” will showcase musicians with disabilities and offer a wide range of activities throughout the day including dance parties, drum circles and songwriting workshops.

Artists from Daniel Music’s Just Call Me By My Name — a record label for people with disabilities — will perform on The Horizon Stage throughout the festival.

You can find the schedule of events here.

For those who need a ride, a “Hello Inclusion” bus departing from Daniel’s Music Foundation in New York City will be available. Contact Nadine McNeil at nadine@danielsmusic.org or 212-289-8912 to purchase tickets for the bus.

Details

When: Friday July 12, 2024

Time: 3 p.m. to 7 p.m.

Where: Bethel Woods Center for the Arts, 200 Hurd Rd., Bethel, N.Y., 12720

Cost: $25 a ticket for all activities

Get your tickets here. IMPORTANT NOTE: Click the “Purchase Tickets Button” then press the “Unlock” button on the right side of the page and enter code HELLO into the offer passcode box. Select either $25 Lawn tickets or $45 Pavilion tickets, which includes the Jason Mraz concert at 7:30 p.m. This will serve as your ticket to Hello Inclusion.

Photo Courtesy of Bethel Woods Center for the Arts