January 7th, 2022
The biweekly newsletter for the NYS CYSHCN Project.
Items in this email are relevant to all 58 NYS LHDs.
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Events and Resources for Professionals

Starts Jan. 14th, 2022 at 12pm · By RFK CERC · Free

The Rose F. Kennedy Children's Evaluation and Rehabilitation Center (RFK CERC)/Montefiore Medical Center in Bronx, NY is presenting a Project ECHO (Extended Community Health Outcomes) program, a remote interdisciplinary learning collaborative, on the impact of the opioid epidemic and trauma on child development.    
Local and national experts will present emerging knowledge and evidence-based practices in screening, monitoring, and care for children and families directly and indirectly exposed to the opioid epidemic and trauma.   
An ECHO community goes by the motto “All Teach, All Learn” Each session will include subject matter presentations followed by a case discussion provided by the ECHO participants. 
Sessions will run on Fridays from 12-1pm every 2 weeks for a total of 9 sessions beginning 1/14/2022. 
*To enroll*
If you are interested in joining this learning collaborative or have any questions, please email Oscar Purugganan, MD ( and Carol Terilli, PT, DPT (

Events and Resources for Families & Professionals

U.S. Access Board Seeks Additional Information for Advisory Guidelines for Aircraft Onboard Wheelchairs
Open until Jan. 17th, 2022 · By U.S. Access Board · Free

The U.S. Access Board has reopened its public comment period on advisory guidelines for aircraft onboard wheelchairs until January 17, 2022. As indicated in a published notice, the Board seeks information on onboard wheelchair loads and caster wheels for use in finalizing its voluntary guidelines. The Department of Transportation also solicits further information on its performance standards for onboard wheelchairs as outlined in a separate meeting notice.  

Individuals may submit comments to the Board via any of the following methods:  

  • Federal Register Notice: Select the “Submit a Formal Comment” button on the right-hand side and follow the instructions. 
  • Email: Include docket number ATBCB-2019-0002 in the subject line of the message. 
  • Mail:  

Office of Technical and Information Services 
U.S. Access Board
1331 F Street NW, Suite 1000
Washington, DC 20004-1111 

For access to the docket to read background documents or comment received, go to

Multiple Languages: Plain Language COVID-19 Fact Sheets
Jan. 3rd, 2022 · By Council and MDH · Free

The Maryland Developmental Disabilities Council (Council) and the Maryland Department of Health (MDH) released COVID-19 fact sheets in plain language in seven languages. The fact sheets are translated in Spanish, French, Amharic, Chinese, Russian, and Korean. The topics include high risk health conditions, testing, monoclonal antibody treatment, vaccines, vaccines at home, vaccines for children, and booster shots. You can download these fact sheets as a set or by topic

Why is it important to have plain language fact sheets about vaccines? 
"The lack of access to reliable information and vaccination sites has hampered vaccination efforts[...]For people with intellectual disabilities and for people who are immunocompromised to some degree, advocates say that the fear of vaccination, lack of understanding of medical jargon, and lack of communication from doctors on individual health impacts was greatly unaddressed." Check out the full story "Disabled community 'left behind' in vaccine rollout one year later" from ABC News.
Front Door Information Sessions for 2022
2022 · By OPWDD · Free

The Office for People with Developmental Disabilities (OPWDD) Front Door information sessions will outline the process of how you can become eligible for supports and services, the types of supports and services available and where you can go to get assistance. 

All sessions are presently offered remotely, either by WebEx or Phone Conference.

A schedule of sessions in English and Spanish are listed here. Registration for a session is required. Once you have found the date and time that works best for you, please click “Learn More” for information on how to register. 

All Regional Offices offer translation services for the language that best fits your needs. If you require a session in a language other than English or Spanish, including American Sign Language (ASL), please contact your Regional Office for assistance.

TASP'S 2022 Webinar Series
Jan. 12th - Sept. 8th · By TASP · Free

Thanks to the generous support of the Maryland DD Council, The Association for Successful Parenting (TASP) is excited to continue our FREE webinar series in 2022!

  • All webinars are offered in a live, interactive format via Zoom.
  • After they have aired live, a recorded version will be available to TASP members for free and for non-members for a fee.  Purchase recorded webinars, or become a TASP member and get them for free!
  • See the schedule of webinars here and register today for the January 12th webinar The Concept of “Good Enough Parenting” and How it Impacts Parents with IDD.
Media and Research Corner
Complex Rehabilitation Technology (CRT) Wheelchair Policy Stakeholder Survey
Dec. 20th, 2021 · By The University of Pittsburgh · Free

The University of Pittsburgh, in collaboration with other investigators, seeks to identify the benefits and shortcomings of various types of existing wheelchair policies in the United States and around the world. We are seeking broad feedback from all stakeholder groups, including people who use wheelchairs, care partners/caregivers, clinicians, suppliers, manufacturers, policymakers, and funding sources. The survey should take 5 to 10 minutes to complete.

More information about the project can be found at

Please feel free to contact should there be any questions or comments. 
American Indian Culture
Nov. 2nd, 2021 · By MHDD Equity, Diversity, & Inclusion · Free

The Mental Health and Developmental Disabilities National Training Center wanted to bring our most recent Equity, Diversity, & Inclusion (EDI) project to your attention. We have worked together with Native American/American Indian peoples to produce a webinar, fact sheet, plain language summary, and digital storytelling episode. This content highlights important aspects of Native perspectives on disability and mental health. We hope that you enjoy and learn from these resources, just as we have.
Blog Posts at The Disability Visibility Project
2021 · By Disability Visibility Project · Free

Alice Wong (she/her) is a disabled activist, writer, media maker, and consultant. She is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture created in 2014. Check out the latest guest blog posts, and see a great blog post below:
Best Book 2021: Books We Love
2021 · By NPR · Free at Your Public Library

Demystifying Disability: What to Know, What to Say, and How to be an Ally
By: Emily Ladau
If you’re like me, fear of causing offense or saying the wrong thing can prevent me from saying anything at all – which only perpetuates ignorance, or even harm. But the disability community is huge and extremely diverse and complex. Where to begin? I suggest starting with Emily Ladau’s Demystifying Disability, a fantastic primer for improving your understanding of disability and ableism. This book will give you the history, ideas, language, etiquette and practical tools you need to begin your journey to becoming a more knowledgeable and aware ally, along with resources for where to go next.
— Erin Sells, director, Institutional Giving

The Heart Principle: A Novel
By: Helen Hoang
Anna Sun is a talented violinist in the Bay Area whose disappointing boyfriend springs a proposal on her: an open relationship. While processing her boyfriend’s request and battling a creative block, Anna meets Quan and wonders if he might be the real deal. This book deals with issues that feel really relevant to today, such as creative burnout, bad boyfriends and neurodivergence, which Helen Hoang explores through these deeply rich and heartfelt characters.
— Candice Lim, production assistant, Pop Culture Happy Hour
This email was sent from the Regional Support Centers (RSCs) for the Children and Youth with Special Health Care Needs (CYSHCN) Program (“The CYSHCN Project”) team. You are receiving this email because you are listed as a Local Health Department (LHD) contact for the CYSHCN Project.

Each LHD is paired with a RSC: 
Please see below for your RSC contact:
-    NYC, Suffolk, Nassau = Rachel Passmore,
-    Western and Central NY and the Southern Tier = Mark Prins, + Mariela Leon-Thomas, 
-    Eastern NY from the Hudson Valley to the Northern NY Border = Angel Morales,

Find Out More
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