December 21st, 2021
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

Family Voices: Anti-Racism Toolkit
Nov. 30th · By FamU · Free

Family Voices United to End Racism Against CYSHCN and their Families (FamU) launched a toolkit website designed to support the important work of dismantling racism in health care. The website offers concrete tools designed to support organizations and individuals to become more culturally competent and responsive by building meaningful, equitable engagement with Black children and youth with special health care needs (CYSHCN) and their families.
Disability Language Style Guide

As language, perceptions and social mores change rapidly, it is becoming increasingly difficult for journalists and other communicators to figure out how to refer to people with disabilities. Even the term “disability” is not universally accepted. This style guide, which covers dozens of words and terms commonly used when referring to disability, can help.

Events and Resources for Families

Supported Decision-Making Pilot Program
Received Dec. 15th · By NYS DOH · Free

The Office for People With Developmental Disabilities (OPWDD) is pleased to announce that we are expanding the Supported Decision-Making New York pilot program to develop greater support for people with developmental disabilities who choose to exercise supported decision-making.

The Supported Decision-Making NY pilot program, originally funded by the Developmental Disabilities Planning Council, began in 2016. OPWDD is now dedicating a portion of the funding it will receive through the American Rescue Plan Act (ARPA) to continue the pilot program, expanding it to include supported decision-making facilitation as an effective way to ensure that people are assisted to implement effective and sustainable supported decision-making agreements.
New York State Rare Disease Workgroup Member Application
Received Dec. 10th · By NYS DOH · Free

The New York State Department of Health (NYS DOH) is seeking individuals who are interested in becoming a member of the newly formed New York State Rare Disease Workgroup.

If you are interested in becoming a member of the workgroup, please
complete the survey using the attached this link by December 31st, 2021: 
If you have difficulties completing the linked survey, please contact us at (preferred) or by calling (518) 473-4371.  
Apply for the Non-Parent Caregiver Grant 
Nov. 15th · By The NYS Kinscare Coalition · Free

Do You Need Financial Help to Raise Your Grandchild? The non-parent grant offers financial assistance for grandparents raising grandchildren or other relative caregivers. Find out if this grant could help you.
Media and Research Corner
Plain Language FAQs about COVID-19 Vaccines - Now in Bengali
Recently Published· By AUCD NCDPH · Free

Thanks to the partnership between the VaxFactsDDNY team at the Einstein/Montefiore RFK UCEDD and the Autism Habilitation Society Organization (ASHO), the plain language document FAQs about COVID-19 Vaccines is now in Bengali and featured on the Association of University Centers on Disabilities (AUCD)’s National Center on Disability in Public Health (NCDPH) website.
Considering Toxic Chemicals in the Etiology of Autism
Nov. 30th · By Heather Volk, PhD, et al. · Free

Diagnoses of autism spectrum disorder (ASD) (also referred to here as autism), a condition that arises during early brain formation, have increased to now affect 1 in 54 children in the United States. Scientists long recognized that genetic factors contribute to autism etiology, as indicated in family, twin, and genetic studies. The environment may act in concert with genetic risk pathways or affect the intrauterine environment directly. In addition, the environment may induce similar epigenetic signatures in twins during gestation. Thus, the shared environment is itself complex and not easily disentangled from shared genetics. Read the journal article here.
COVID-19: A Discussion for Children, Teens and Adults with Developmental Disabilities and Families
Recorded Webinar from Nov. 17th · By RFK CERC · Free

On Wednesday, November 17th, 2021, Dr. Lisa H. Shulman, Neurodevelopmental Pediatrician and Interim Director of Rose F. Kennedy CERC at the Children's Hospital at Montefiore, gave a virtual talk about COVID-19 vaccines for children with autism and other developmental disabilities. Questions from parents about vaccine benefits, side effects, and ingredients were answered.
Ableist language is everywhere — but we can still avoid it
Nov. 16th · By BuzzFeed Copy Desk · Free

Ableism Is Embedded In Our Language. We Can Dismantle It.
To erase ableism from how we write and speak, we need to agree on what ableism is and understand what it looks like in our language. Read the article here.
Tiny Love Stories: 'Of Wings and Wind'
Nov. 2nd· By The Aimee Christian at the New York Times · Limited Free Articles
My daughter was 2 when she was fitted for her first wheelchair. I cried because I feared the wheelchair meant a lifetime of dependence and frustration. When it arrived, I grimaced at its pink metal frame. But not my daughter! Her face lit up. Even then, its wheels whispered to her of freedom, of wings and wind and the sun on her face. Now, at 10, my daughter speeds down the road, squealing with delight. I love her wheelchair; it is a part of who my girl is. Read in NYT.
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,
-    Eastern NY from the Hudson Valley to the Northern NY Border = Angel Morales,

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