The Boost Q&A: Heather Burroughs and Steve Gonyea of New NYS Podcast, ‘Finding Common Ground’

A new developmental disability podcast focused on New York State and beyond, “Finding Common Ground,” has an unusual goal for a medium centered on a microphone: Make less noise. Or, at least, less static.

“Berating politicians that don’t want to hear what we have to say doesn’t work,” says Steve Gonyea, co-creator of the podcast with Heather Burroughs. “Hopefully, we can empower people to find a different way of advocating. We’re looking for solutions.”

Gonyea and Burroughs, both of whom have children with developmental disabilities (DD), are longtime committed advocates in New York State and beyond. They’ve been deep into the muck themselves, both in terms of navigating the broken DD system of care and services, and in working to change it.

The podcast, two of which have been posted — three including an introduction to the project — features guests discussing a wide range of issues affecting the DD community, including the laws that govern it. First guest up was New York State Assemblymember Marianne Buttenschon who, among other things, shares how to get positive attention from hard-to-focus state leaders. Sneak-peek tip: Make sure you have the facts ready to support an ask.

The second podcast features 73-year-old Teena Fitzroy, a woman with cerebral palsy who would not let the system hold her back. As a child, for starters, she rebelled her way out of institutional care. Now she advocates for choice, inclusion and more.

The Boost spoke with Burroughs and Gonyea about “Finding Common Ground”’s mission, their not having an agenda and why it’s good to be fearless.

This article has been trimmed and edited for clarity. Brief bios are at the end of the Q&A.

The Boost: How did the podcast come together?

Heather Burroughs: Steve and I live in different parts of the state [Burroughs in Rochester, Gonyea in Utica], but we met through NYADD [the New York Alliance for Developmental Disabilities, an advocacy organization].

We started to talk about how so many people we hear from in Facebook groups and other places feel so discouraged. They bash [the system] and complain about how it’s broken. And we discussed how in a way we’re all just talking to people who agree with each other. But if you don’t sit down with the people who oppose you or demean you and see why they feel a certain way, you can’t change the situation.

What’s ‘Finding Common Ground’’s mission?

Steve Gonyea: I go to Albany a lot. About a year-and-a-half ago, I realized it was always the same old same old and things weren’t getting done. We want to shine a light on the issues and talk about the solutions, in some cases those that are already being worked on behind the scenes.

HB: We don’t have an agenda. It’s a discussion of what didn’t work, what might work the next time. Some people don’t know what they don’t know and think they’re doing the right thing. They hear [new information] and then see things a bit differently.

We also want to give people a blueprint: “You feel like you’re banging your head against the wall? Try these three steps.”

So, what are other ways to get the attention of people with power?

HB: How about asking politicians to try a pilot program instead of asking them to say “yes” to an entire project. With elections coming up they want to be champions so leverage that. Tell them if they try it, they’ll look like a hero.

Identifying a problem doesn’t get you anywhere. They know the problem, so you have to help with solutions

What guests do you have coming up?

HB: We were really inspired by our talk with Otto Lana and Marilee Bugeson, which will be released soon. [“Otto’s Voice: A Journey Beyond Words.”] Otto, an exceptional advocate, poet and entrepreneur, is a non-speaker who recently graduated high school and will be the first “multi-modal communicator” on the University of San Diego’s campus.

Marilee is a developmental speech therapist from California specializing in the Developmental, Individual-Differences and Relationship (DIR) model. They discuss how trust, respect and a presumption of competence can unlock communications pathways that were once though inaccessible.

We also have upcoming episodes recorded on CDPAP, trauma in the DD population and a look at the DSP crisis.

Any others brewing in your minds?

HB: It would be good to have a family who did something special, created a law or a community center, and to talk to them about the hurdles they hit.

SG: Yes — family voices are not being heard.

HB: We’d also love to talk to guests who are on opposing sides of an issue, have them on together and [facilitate] a dialog.

Traditional advocacy isn’t working the way it used to. We can show people how we approach it differently, how it works and how it empowers you.

Anything else you’d like to mention? The floor is yours!

HB: We have to thank Scott Fitzgerald. He’s the owner of the Roc Vox Recording Studios, has a child with autism and has supported this endeavor on so many levels, from renting us studio space to helping us edit/upload, etc. He’s a man of many talents.

Brief Bios

Heather Burroughs is the Advocacy and Education Director at AutismUp and a Rochester native who discovered her passion for advocacy through supporting her sister with autism. Now a mother of four children with varying disabilities, she has years of experience navigating the developmental disability system and has supported families in education, healthcare and housing.

Steve Gonyea is the father of seven children, including an adult son with autism and a processing disorder and another with other developmental disabilities. A longtime foster parent who ostensibly is retired he is, among many other things, NYS vice chair of the National Council on Severe Autism and an ombudsman at the NYS Dept. of. Health Office of the Aging.Image: The “Finding Common Ground”

Image: Created by Elli Pereira-Burroughs, Heather Burroughs’ 19-year-old daughter.

Editor’s Note: The Boost co-wrote a published Op-Ed with Heather Burroughs earlier this summer.

More Developmental Disability News for Week Ending Aug. 23

Money for the developmentally disabled left on the table in California, an AI model that seems pretty darn good at predicting early autism, and more developmentally disabled news for the week ending Aug. 23, 2024.

Spotlight: Neurodiversity

It’s been extraordinary seeing Gus Walz, the 19-year-old neurodiverse son of Minnesota Governor and Democratic VP nominee Tim Walz, in the public eye. His presence helps normalize developmental disabilities (DD) and shows how people with DD are well, ordinary, the same as you and I.

I was especially moved by this short video clip from the AP. In it, the Walz family tears up as Tim Walz recounts the story of his and wife Gwen’s infertility struggles. As Walz says to his children, “Hope, Gus and Gwen, you are my entire world, and I love you,” his son, Gus, stands up to applaud, tears streaming. And here’s the article the AP posted a couple of days later: Sudden fame for Tim Walz’s son focuses attention on challenges of people with learning disabilities.

Additionally, the New York Times posted My Son and Gus Walz Deserve a Champion Like Tim Walz, an opinion piece from none other than Tina Brown, who writes that “Gus Walz has, according to his parents, a nonverbal learning disorder, A.D.H.D. and an anxiety disorder, all of which they regard not as a setback but as his ‘secret power,’ that makes him ‘brilliant’ and ‘hyperaware.’ I know exactly what they mean. One of the joys of my life in the social churn of New York is living with a son whose inability to read the room makes him incapable of telling anything but the truth.”

Also this week, MSNBC posted What anxious parents of neurodivergent children can learn from Tim and Gwen Walz. “The Walz family’s words and their embrace of their son may seem utterly unremarkable,” it reads. “But that’s the point.” The Washington Post, USA Today and NBC News also gave Gus and neurodiversity the spotlight treatment. Many other smaller outlets posted articles asking and answering, “What is a neurodivergent learning disorder?” Can’t say I mind seeing neurodiversity as a trending topic. In fact, it’s pretty fantastic and I hope they keep on coming.

New York

Mercy U, BloomBoard address special education teacher shortage The program provides an on-the-job pathway for Mercy’s Bachelor of Science in Teaching Students with Disabilities. (News 12 Long Island)

New Yorkers with disabilities still fighting MTA over large subway gaps (amny)

Rochester teen creates website to share stories of people with disabilities “Living Beyond Limits,” created by a teen with cerebral palsy, hopes it will be a platform to show that having a disability doesn’t limit one’s potential to achieve their goals and dreams. (kttc.com)

Outside of New York

Boulder police raise awareness about interactions with people on the autism spectrum The idea came from parents who approached the department. (cpr.org)

Rutgers club in N.J. helps young adults with autism gain independence. Now it could go national The Nexus program, which kicked off at Rutgers’ Newark, N.J., campus, is said to be garnering interest from other institutions. (northjerseys.com)

Illinois bans corporal punishment in all schools Studies show that the hitting of students is disproportionately administered to Black males and students with disabilities. (AP)

Parents of severely disabled children beg Oregon to expand paid parent care program It’s a nationwide crisis. (katu.com)

Mass. system is failing young adults with autism after they turn 22 Also a nationwide crisis. (wgbh.com)

Nearly $1 billion in funds left unspent by centers for disabled Californians They were ultimately returned to the state, even as some people with disabilities and their families said they needed more help. In part, this is due to yet another nationwide crisis: Providers are unable to find workers to fill jobs. (Los Angeles Times)

Autism

AI Model Predicts Early Autism With Surprising Accuracy Researchers have developed a machine-learning model, AutMedAI, capable of predicting autism in children under two with nearly 80% accuracy. (SciTechDaily)

Education

Nationwide Shortage Of Special Educators Plagues Districts A new report from the U.S. Department of Education shows that 39 states and Washington, D.C., have a shortage of special ed teachers. (Disability Scoop)

Rich Men Behaving Badly

Elon Musk Under Fire for Using Anti-Disability Slur on X  He went there — Musk used the “r” word. (Yahoo, via Daily Beast)

2024 Back-to-School Primer, from Early Intervention to Postsecondary Transition Planning

Welcome to the jungle. Special Education is a complicated ecosystem and whether you’re in the thicket or about to step into it you undoubtedly have questions. To help, The Boost has put together a Special Education primer of guides and resources to help you navigate the rules and regulations that aim to give students with disabilities a Free Appropriate Public Education (FAPE).

A primer, of course, is a promise to lay things out neatly and special ed is anything but clear-cut. The number of students in special ed in the U.S. nearly doubled in 2022 over the past four decades, from 3.6 million in the 1976-77 school year to almost 7.3 million in 2021-22, creating a rising share of public school kids who need these services.

This puts a strain on an already fragile system. Forty-five percent of schools nationwide reported special ed teacher vacancies, and 78% reported difficulty in hiring, according to a 2022 U.S. Schools Report from the National Center for Education Statistics.

In good news, the law is on your side. There are also untold numbers of dedicated educators commited  to giving your child the best education possible. You’re also not alone, and expert advocates nationwide can help you navigate the system’s ins and outs. (See “Advocates” section below.)

Let’s get to it. The below includes information focused on but not inclusive to New York State.

The Law

Special Education, which is free if not equal, is governed by the federal Individuals with Disabilities Education Act (IDEA). Passed in 1975, the law makes available a FAPE to eligible children with disabilities and ensures special education and related services to those children.

Who’s Eligible

Infants and toddlers, birth through age 2, with disabilities and their families receive early intervention services under IDEA Part C.

Three- to 21-year-olds with disabilities receive special education and related services under IDEA Part B.

Early Intervention

In New York, to be eligible for services children must 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.

You can contact your municipal Early Intervention Official (EIO) for information about your local program or to refer a child. For information about the statewide program, contact the NYS Department of Health, Bureau of Early Intervention at (518) 473-7016 or e-mail beipub@health.ny.gov.

If your three-year-old received services from the Early Intervention Program and is in need of special education services, they will need to transition (move) into the preschool special education program. The Early Intervention official from your county must give written notice to the Committee on Preschool Special Education (CPSE) in your local school district that your child may be transitioning. With your consent, a transition plan must be developed no later than three months before your child’s third birthday.

The Steps

The source for the below is Parent’s Guide: Special Education in New York State for Children Ages 3–21, where you’ll find details. Note: The heart of the process is the Individualized Education Program (IEP), which you’ll hash out with the school every step of the way, every year.

• Step 1: Initial Referral: This goes to a district’s multidisciplinary team called the Committee on Special Education (CSE) or the Committee on Preschool Special Education (CPSE). CPSE is responsible for ages 3-5; CSE for ages 5-21. Some school districts also have Subcommittees on Special Education.
• Step 2: Individual Evaluation Process: The Committee arranges for an evaluation of the student’s abilities and needs. (Additional evaluation info can be found here.)
• Step 3: Determining Eligibility: It’s in the hands of the Committee, based on evaluation results.
• Step 4: Individualized Education Program (IEP): If the child is eligible to receive special education services, the Committee develops and implements an appropriate IEP, based on evaluation results, to meet the needs of the student. Services are to be provided in the least restrictive environment (LRE).
• Step 5: Annual Review/Reevaluation: The IEP is reviewed and, if needed, modified or revised by the Committee at least once a year (annual review). The student has a reevaluation at least once every three years, but it may also occur when conditions warrant or when requested by a parent or teacher.

Dispute Resolution Options

Types of Diplomas

Students with an IEP have several what’s called “exiting options,” programs, and activities. Check them out in the Transition Guide from the Office of Special Education and Rehabilitative Services (OSER), U.S. Department of Education.

Postsecondary Transitioning

(Source: OSER Transition Guide)

Both the IDEA and the Rehabilitation Act require transition services to be available to students and youth with disabilities as they prepare for and enter postsecondary life. But with years of structured support ending and adult services understaffed and underfunded, there’s a reason this period is called “the cliff.”

Transition services require a coordinated set of activities “within an outcome-oriented process” that relies upon active student involvement, family engagement and cooperative implementation of transition activities, as well as coordination and collaboration between the vocational rehabilitation (VR) agency, the State educational agency (SEA) and the local educational agencies (LEAs).

Planning for these services starts in high school. It must start by the time a student turns 16, but the earlier the better.

Additional resources

101 Answers: How to Get Help at School for Your Child with a Disability This excellent booklet comes from Student Advocacy, a nonprofit legally based education advocacy agency in New York that offers services including representing students and families at IEP meetings. (Read more about Student Advocacy below.)

The Arc’s Back-To-School Guide for Families of Children With Disabilities Practical tips to help you and your child start the school year off right.

U.S. Office of Special Education and Rehabilitative Services Blog A series of blog posts on transitioning from The Dept. of Education.

NYS Education Dept. Transition guide

Simple Ways to Transition Back to School With Autism

Introducing your child to their teacher Some tips from the non-profit Exceptional Lives.

What should I know about IDEA? Additional info from Exceptional Lives.

Advocates

Below are some agencies to call with questions, and some to peruse to keep abreast of helpful seminars and resources:

National

Parent Centers: Parent Training and Information Centers (PTIC) and Community Parent Resource Centers (CPRC) are funded by State and Federal grants. They provide workshops on parent rights, necessary services, advocacy and other relevant presentations for parents of children with disabilities. Call them for information and/or assistance.

New York

Student Advocacy Based in Elmsford, N.Y., it provides legally-based education advocacy services for youth in Westchester and Putnam counties. Its services are offered free of charge to families, or on a sliding scale.

NYS Special Education Advocates The state advocacy program can help parents of students with disabilities navigate through the school system to determine an appropriate education that meets their child’s needs. It also offers workshops.

Parent to Parent of NYS This statewide network of parents who provide emotional support to families of individuals with special needs often offers special education workshops.

Advocates for Children of New York Its staff of attorneys and education specialists provide free legal and advocacy services, including representation at school-related hearings and appeals, and teaches families what they need to know to stand up for their children’s educational rights.

Sprout, a New Neurodiverse-Friendly ‘Playscape,’ Opens in Harlem

It’s all-too-rare to hear about urban neurodiverse play areas so, in great news, what’s being called a “playscape” by multidisciplinary design studio The Urban Conga recently opened in New York City’s Harlem neighborhood at the Polo Grounds Towers on Frederick Douglass Blvd.

Working with the Polo Grounds residents, The Urban Congo turned an empty courtyard with battered benches into a multi-sensory play space. It uses texture, color, reflections, movement, sounds and scale to focus on what a spokesperson says will accommodate “a wide range of neurological differences and cognitive styles.”

Sprout has leaf-like structures in various heights meant to appear as if they’re growing up from the ground. They reach across four “zones” and contain kinetic elements made of reflective pieces that can be spun and which change colors, and were designed in part to help accommodate those with ADHD.

There’s also a bench area that has no direct interaction with the structure and aims to serve as a quiet space to escape from sensory overload.

Sprout was organized by the Polo Grounds neighborhood stakeholder team (NSTAT) along with the Center for Innovative Justice and is part of the Mayor’s Action Plan for Neighborhood Safety (MAP) that reimagines public safety and wellbeing through place-base resident-drive decision-making and government investment. 

Photo credit: Mars and the Moon Films

More Developmental Disability News for Week Ending Aug. 16, 2024

CDPAP’s busy news week, school-parent conflicts are increasing, Democratic VP candidate Tim Walz opens up about his nonverbal son, and more developmental disability news for the week ending Aug. 16, 2024.

Spotlight: Artificial Intelligence

People with developmental disabilities can find it especially hard to navigate friendships, which is why I found this article, AI ‘Companions’ are Patient, Funny, Upbeat — and Making It Easy to Make a Bad Choice, so compelling.

The article, from the nonprofit The 74, does note some positives, but also cautions that “many kids are being exposed to risky behaviors from AI chatbots, including sexually charged dialogue and references to self-harm.”

The “companion” phenomenon “arises at a critical time for young people,” the site reports. “In 2023, U.S. Surgeon General Vivek Murthy found that, just three years after the pandemic, Americans were experiencing an ‘epidemic of loneliness,’ with young adults almost twice as likely to report feeling lonely as those over 65.”

You might also be interested in an article The Boost posted in 2023, The Latest AI News, from Existential Threat to Support System for Students with Disabilities.

New York

Opinion: We must do better for children and adults with disabilities New York State Sen. Pam Helming tackles the serious shortage of DSPs, teachers and clinicians. (Finger Lakes Times)

N.Y. advocates for people with disabilities ready a push to extend preferred source contracting In 2022, lawmakers expanded a program called “preferred source contracting” to boost employment opportunities. But the program will sunset in 2025 unless lawmakers take action. (nystateofpolitics.com)

U.S. Rep. Brandon Williams advocates for Autism CARES Act in Utica Williams is co-sponsoring the national bi-partisan bill that aims to reauthorize $2 million to aid autism research and programming. (WRVO.org)

New Acting Commissioner Willow Baer Addresses NY’s Developmental Disabilities Crisis “We are here to make sure that people can live the life they want to live.” (Fox 5 New York)

New York CDPAP News

Yes, there was so much Consumer Directed Personal Assistance Program (CDPAP) news this week, it gets its own section. Gov. Hochul has called the Medicaid program, which the state has said has an annual price tag of more than $9 billion, “a racket.” Those who use it don’t agree.

Disability Advocates Fear New York Will Gut a Key Home Care Program Mother Jones gives the issue a national platform. (Mother Jones)

Health providers concerned about impact of New York Medicaid reform The state Health Department responded this week to questions about Request for Proposals to choose one company to oversee CDPAP.  Many providers are worried those cuts will impact available care, and force elderly and disabled New Yorkers into adult-care facilities. (Spectrum Local News)

Opinion: New York’s home care crisis is already dire. We need Gov. Kathy Hochul to act “Hochul’s TikTok ‘research’ misleadingly suggests that [FIs] can manipulate eligibility.” (democractandchronicle.com)

Outside of New York

Crowdfunding initiative to help Nebraskans with disabilities The state’s version of ABLE can use funds raised by a new crowdfunding website. The funds reportedly will not impact their benefits unlike a traditional crowdfunding website. (1011now.com)

Louisiana district shows special ed inclusion gains after successful partnership Improved parent-school relations and ongoing professional development has led to greater participation for students with disabilities in general ed classes and extracurricular activities. (k12dive.com)

Education

Nearly 50% of special ed directors say school-parent conflict is increasing A yet-to-be-published survey finds these directors want more training and resources on early dispute strategies. (k12dive.com)

Highlights of New GAO Report on K-12 Schooling for Students with Disabilities Among other things, it shows significant state-to-state variation in student-to-staff ratios for students with disabilities. (Capitol Connection)

30% of LGBTQ Students Diagnosed With Disability, Twice the Rate as Kids Overall New report finds this dual identity makes victimization in school and exclusion from activities even more pervasive. (The74)

Autism

More therapy for autistic children isn’t always better A new study in JAMA Pediatrics suggests that more intensive therapy for autistic children is not associated with better outcomes in development. (Bloom Blog)

Health

AMA steps up advocacy alongside patients and physicians with disabilities Its new primer is a result of a strategic plan’s effort to address social determinants of health and underlying causes of inequities. (AMA)

Census

Census Rethinking How to Count Disability Population The U.S. Census Bureau will meet with advocates Sept. 30 concerned about the potential for a severe undercount. (Disability Scoop)

Candidates

Tim Walz and His Wife, Gwen, Open Up About Son’s Non-Verbal Learning Disorder: ‘His Secret Power’ Walz’s “brilliant” 17-year-old son, Gus, has a non-verbal learning disorder, ADHD and an anxiety disorder. (People)

Learn All About Project Lifesaver, a Program to Help Find Wanderers

If you have a child with autism or any kind of developmental disability who wanders, Project Lifesaver might be of interest.

The program, used in all 50 states and Canada, employs radio frequency technology to find children and young adults with autism or developmental disabilities who wander, and works to safely returns them home. Project Lifesaver claims that it’s “the first to apply such locating techniques to aid in the search and rescue of individuals.”

Individuals who are part of the program wear a personalized bracelet that emits a locating signal. The bracelet is a one-ounce battery-operated radio transmitter that produces an automatic locating signal every second, 24 hours a day, according to Westchester County’s Project Lifesaver program, which has been operational since approximately 2009. The signal can be traced on the ground or in the air up to 6-10 miles. The bracelet is water resistant and can be worn in the bath, shower, pool, etc., and is made out of very strong plastic material.

After caregivers call 911, their local police department will be dispatched to the area to begin the search for the missing person. In Westchester County, Westchester County Police also need to be called and dispatched to the area to search with a mobile locator receiver system.

To be eligible for sign-up, a person must:

• Live with parents/guardians (it’s not available for those who live in group homes or residencies);
• have a tendency to wander or get lost;
• have autism or other developmental disabilities.

To locate the Project Lifesaver member agency that serves your area, click here, or call 1-877-580-LIFE for assistance. You can also just do a search using your county and “Project Lifesaver,” which will likely bring up the needed information.

In Westchester, Project Lifesaver is a partnership between Westchester Jewish Community Services (WJSC), Westchester County Department of Community Mental Health (WCDCMH), and Westchester County Department of Public Safety (WCDPS).

Those interested in the program there should contact WJCS Project Lifesaver Program Manager Isabel Pettersen at 914-761-0600 x2230; ipettersen@wjcs.com.

‘Kids Can’t Wait’ Campaign Launches New York Parent Advocacy Network

The Kids Can’t Wait campaign is a group of early childhood advocates, parents, and providers who have been working to change New York state policy and funding related to Early Intervention and Preschool Special Education services in hopes that children will receive these services as quickly as possible.

Now, it’s launching the Kids Can’t Wait Statewide Parent Advocacy Network. It’s a forum where parents can connect with other parents across New York, hear from experienced parent advocates, and learn how to get involved in legislative advocacy in your communities and at the state capitol in Albany. (See details below.)

A little bit of background: The Kids Can’t Wait campaign was created by The Children’s Agenda, which advocates for effective policies and drive evidence-based solutions for the health, education and success of children. The Children’s Agenda writes on its website that it’s especially committed to children who are vulnerable because of poverty, racism, health inequities and trauma.

Its many important policy priorities include increasing compensation and benefits for the child care workforce; reducing the “harmful impact of exclusionary discipline on children” by limiting suspensions (The Boost has written several pieces about the disproportionate number of suspensions given to children with disabilities, such as this Special Ed ‘Informal Removals’ Update); and increasing equitable access to health care and mental health services for children. You can find its policy priorities here.

Parent Advocacy Launch Details

The launch meeting is Sept. 19 from 6:30 to 8 p.m. You can register here.

Spanish interpretation services will be available.

Únase a nosotros el 19 de septiembre cuando lancemos la Red Estatal de Defensa de los Padres “Los Niños No Pueden Esperar”. Conéctese con padres de todo el estado de Nueva York para compartir espacio, escuchar a padres defensores experimentados y aprender cómo participar en la defensa legislativa en su comunidad y en nuestro capitolio estatal en Albany.

Habrá servicios de interpretación al español.

Share Your Thoughts About NYS Care Coordination Program with OPWDD’s Evaluation Survey (Due Aug. 26)

I know, another survey.

Look, they need to hear from people intimately familiar with the program and I think we can only hope they care about what we have to say.

This is the deal: The Office for People with Developmental Disabilities (OPWDD) currently has a contract with the American Institutes for Research to conduct this independent evaluation of the Care Coordination program. The goal is is to learn what parts of the program are working well and what areas could be improved.

If you interact on a regular basis with Care Coordination Organizations and care managers and feel you can help OPWDD understand how it can strengthen care management going forward, give it a shot. The online survey will be open until Aug. 26, 2024.

To participate click here.

If you are viewing the survey on a mobile device, click the purple arrow at the bottom of the page to move through the survey.

To view the survey in a language other than English, go to the upper righthand corner of the survey and select the globe icon to view the available languages.

Learn more about this project at https://opwdd.ny.gov/american-rescue-plan-act-arpa.

More Developmental Disability News for Week Ending Aug. 9

The latest study on disability and employment, a Hollywood star starts a new I/DD foundation, and more developmental disability news for the week ending Aug. 9, 2024.

Spotlight on Employment

Making news this week is The Rockefeller Institute’s just-released report on employment for people with disabilities.

People with disabilities, its executive summary states, are less likely to be employed than their peers, and when they are employed work fewer hours for lower wages. The report focuses on an “understudied barrier,” which is the employment disincentive created through eligibility rules for public benefits programs.

Here’s a quick look at its 3 key findings:

• Prevalence of missing information and misinformation: Eligibility requirements for Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), other benefits, and employment programs are complicated. Many people lack adequate information on how to navigate them and rely on outdated or incorrect information when making employment decisions.
• Administrative burden: These are the costs associated with applying for and maintaining access to government services for the person receiving services. Administrative burden encompasses not only the time and effort of applying for and maintaining benefits but also adds to the stress and fear of losing those benefits.
• Risk aversion: The combination of misinformation, partial information, and administrative burden contributes to risk aversion — or the unwillingness to take risks even when the expected outcome of the risk is significantly better than the expected outcome without the risk — among people with disabilities who rely on public benefits. Risk aversion is most associated with the fear of losing health insurance.

Check out the whole report here: Stepping Away From the Benefits Cliff: Policy Strategies to Support Employment for People with Disabilities in New York State (Rockinst.org)

Additionally, Empire Report published a piece co-written by Maureen O’Brien of the NYS Industries for the Disabled and Michael Seereiter of the New York Alliance for Inclusion and Innovation that tackles the report from a New York perspective: Another Barrier for New Yorkers with Disabilities Remains to be Overcome in 2025.

New York

Barista with autism evades homelessness thanks to NYC’s Café Joyeux Café Joyeux is a great example of how businesses can step up to employ people with disabilities. (New York Post) The Boost recently wrote about its New York location, its first outside of Europe : Europe’s Inclusive Café Joyeux Opens First Spot in New York City

Outside of New York

As Justice admin delays funding, West Virginia group homes to close and displace adults with disabilities (Westvirginiawatch.com)

DOJ Releases Scathing Report on Texas’ Juvenile Justice Facilities (Governing.com)

Illinois faces backlash over bid to end oversight of disability services The state falls short of promises made to allow people with intellectual and developmental disabilities to live outside of institutions. (Capitolnewsillinoiscom)

Education

Researchers: Higher Special Ed Funding Not Tied to Better Outcomes An early look at research coming out of Georgetown University’s Edunomics Lab. (The74million.org)

More on Employment

Overtime Mandate Has Disability Providers Considering Service Cuts, Advocates Say The U.S. Dept. of Labor is incrementally increasing the salary threshold at which employees are eligible for overtime pay under a new rule that took effect this summer. (Disability Scoop)

Accessibility

Walmart To Offer Carts For Shoppers With Disabilities At Every Store (Disability Scoop)

Across the Pond

New autism ‘passport’ to help people find work This interesting resource contains advice on transitioning from school to higher education, benefits and job interviews. (BBC)

Technology

Sensor headset allows teen to control devices with his thoughts This Toronto teen uses a brain computer interface (BCI) that translates his thoughts into control of technology, and “it’s giving him a new sense of agency.” (Bloom Blog)

Celebrity

Colin Farrell channels son James’ Angelman syndrome to launch new foundation The star unveiled his eponymous Colin Farrell Foundation, which seeks to benefit people living with intellectual disabilities and their families. (Los Angeles Times)

Developmental Disability News for Week Ending July 26

One in four adults in the U.S. has a disability, a New York state fair caters to people with IDD, SpongeBob SquarePants is autistic, and more developmental disability news for the week ending July 26, 2024.

Spotlight

1 in 4 Adults Has a Disability: CDC

The latest data from the CDC’s 2022 Behavioral Risk Factor Surveillance System (BRFSS) reveal that more than 1 in 4 — over 70 million — adults in the United States reported having a disability in 2022.

The report, which also breaks down some data by state, shows that in New York, 12% have a cognitive disability.

New York

Neglect at Boarding School for Autistic Youth Left a Student With Vision Loss More reporting on Shrubs Oak International School in New York. (ProPublica)

ThinkDIFFERENTLY day returns to Saratoga County Fair for seventh year The event for individuals living with disabilities and their families included limited carnival rides that opened early without flashing lights or loud noises. It’s believed to be the second fair in the state, behind the Dutchess County Fair, to implement a ThinkDIFFERENTLY day. (saratogian.com)

Governor Hochul Signs Legislation to Support New Yorkers With Disabilities This seems to be Hochul’s way of marking the Anniversary of the Americans With Disabilities Act, and has mostly to do with modifying homes and parking permits. (Press release)

Western New York mother developing online platform for disability resources NavigateMD’s goal is to connect individuals with medical providers, businesses, non-profit organizations, and other resources that meet their specific needs. (spectrumlocalnews.com)

Outside of New York

Michigan Ed Dept. denies findings of COVID-era student disability violations The U.S. Dept. of Ed says the state’s students with disabilities were not offered make-up services for instructional time lost due to pandemic school closures. (k12dive.com)

Parents of Children with Special Needs Charge LA School Distrct Holding Back Information They say it’s in retaliation for proposing an Improving Special Education Resolution. (the74million.org)

Illinois faces backlash over bid to end oversight of disability services An independent court monitor says state’s services are “in stark contrast to national best practices.” (capitolnewsillinois.com)

Education

How could Project 2025 change education? A look at how the 2025 Presidential Transition Project, also known as Project 2025 — an initiative organized by the ultra-conservative Heritage Foundation believed to be closely tied to the Trump campaign — can affect areas including special ed. (The Hechinger Report)

Autism

‘Of course’ SpongeBob has autism, voice actor Tom Kenny says. ‘That’s his superpower’ (Los Angeles Times)

Housing

After Years in Hospitals, a Place to Call Home Note: This story about YAI residencies is written by YAI, an organization serving people with IDD. That said, it’s a heartwarming look at an OPWDD program to help people with long hospital stays transition into residential homes, and perfectly encapsulates the importance of such residencies and so the critical need for a living wage for Direct Support Professionals. (YAI.org)

Firsts

Wexton makes history as first member to use AI voice on House floor Democratic Rep. Jennifer Wexton of Virginia, who has Supranuclear palsy and uses a walker, is the first member to use an augmentative and alternative communication device on the House floor. It’s wonderful to see the normalization of a disability in such a public forum. (CNN)

What a Doll

Mattel Introduces a Barbie with Down Syndrome (CBS News)