New York

New York

ADA Center Northeast ADA Center Employment and Disability Institute
201 Dolgen Hall Cornell University
Ithaca, NY, 14853
http://www.northeastada.org


Assistive Technology
NYS Justice Center
161 Delaware Ave Delmar, NY, 12054
(518) 549-0200
https://www.justicecenter.ny.gov/services-supports/assistive-technology-traid


New York State Department of Health
Assistive Technology
https://www.health.ny.gov/facilities/long_term_care/waiver/nhtd_manual/section_06/assistive_technology.htm


CHIP (healthcare for low-income uninsured children)
NY State of Health
https://nystateofhealth.ny.gov/


D D Council NYS Developmental Disabilities Planning Council
One Commerce Plaza, Suite 1230 Albany, NY 12210
http://ddpc.ny.gov


Developmental Disabilities
NYS Office for People with Developmental Disabilities
44 Holland Avenue Albany, NY, 12229
Contact form on web site http://www.opwdd.ny.gov/


Early Intervention Bureau of Early Intervention
NYS Department of Health Corning Tower, Room 287 Empire State Plaza Albany, NY, 12237-0660 http://www.health.ny.gov/community/infants_children/early_intervention/


Epilepsy Epilepsy Foundation of Long Island
1500 Hempstead Turnpike East Meadow, NY 11554
http://efli.org


Intellectual & Developmental Disabilities NYSARC, Inc.
29 British American Blvd. – 2nd Floor, Latham, NY 12110
http://www.nysarc.org


Independent Living
To find out the contact information for the Statewide Independent Living Council (SILC) in your state, contact:


Independent Living Research Utilization Project
The Institute for Rehabilitation and Research
2323 South Sheppard, Suite 1000 Houston, TX, 77019
http://www.ilru.org/projects/silc-net/silc-directory-results/NY


To find out the contact information for centers for independent living (CILs) in your state, contact:


National Council on Independent Living
2013 H St. NW, 6th Floor Washington, D.C. 20006
http://www.ncil.org


Mediation New York State Education Department Office of Special Education
89 Washington Avenue, Room 309 EB Albany, NY, 12234
http://www.p12.nysed.gov/specialed/techassist/mediation.htm


Mental Health NYS Office of Mental Health
44 Holland Avenue Albany, NY, 12229
http://www.omh.ny.gov/


Mental Health Association in NYS
194 Washington Avenue, Suite 415 Albany, NY, 12210
http://www.mhanys.org


NAMI New York State
99 Pine Street, Suite 302 Albany, NY, 12207
http://www.naminys.org


Families Together in New York State, Inc.
737 Madison Avenue Albany, NY, 12208
http://www.ftnys.org


Mental Health – Youth Children’s Services
NYS Office of Mental Health
44 Holland Avenue Albany, NY, 12229
https://www.omh.ny.gov/omhweb/childservice/


Preschool, Disabilities New York State Education Department Office of Special Education
Preschool Unit 89 Washington Avenue, Room 309 EB Albany, NY, 12234
http://www.p12.nysed.gov/specialed/


Protection & Advocacy Disability Rights New York
725 Broadway, Suite 450 – Albany, NY, 12207
25 Chapel Street, Suite 1005 – Brooklyn, New York 11201
44 Exchange Blvd, Suite 110 – Rochester, New York 14614
http://www.drny.org


Relay Services
(800) 421-1220 (V); 711 (V) (800) 662-1220 (TTY); 711 (TTY) (877) 662-4234; 711 (Speech to Speech)
http://www.nyrelay.com


Special Education


New York State Education Department Office of Special Education
89 Washington Avenue, Room 309 EB Albany, NY, 12234
http://www.p12.nysed.gov/specialed


Special Format Books Serving upstate New York
NYS Talking Book and Braille Library Cultural Education Center
222 Madison Avenue Albany, NY, 12230
http://www.nysl.nysed.gov/tbbl/


Special Format Books Serving New York City and Long Island
Andrew Heiskell Braille and Talking Book Library
40 West 20th Street New York, NY, 10011
http://www.nypl.org/locations/heiskell


Special Health Care Needs


Children and Youth with Special Health Care Needs Program
New York State Department of Health Corning Tower Building
Empire State Plaza Albany, NY, 12237-0619
http://www.health.state.ny.us/community/special_needs


Speech, Language, and Hearing
NYS Speech-Language-Hearing Association, Inc.
1971 Western Avenue #1167 Albany, NY 12203
http://www.nysslha.org


State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact your governor and/or your representatives in the Senate and House:
http://www.ny.gov/


Transition Services
New York State Education Department Office of Special Education
Special Education Policy, Transition Services
89 Washington Ave., Room 309 EB Albany, NY, 12234
http://www.p12.nysed.gov/specialed/transition/home.html


UCEDD Westchester Institute for Human Development
University Center for Excellence in Developmental Disabilities in affiliation with New York Medical College
Cedarwood Hall Valhalla, NY, 10595-1689
http://www.wihd.org


Rose F. Kennedy University Center for Excellence in Developmental Disabilities Education, Research, and Service
Albert Einstein College of Medicine
1410 Pelham Parkway South Yeshiva University Bronx, NY, 10461
https://www.einstein.yu.edu/centers/childrens-evaluation-rehabilitation/rose-f-kennedy-ucedd/


Strong Center for Developmental Disabilities University of Rochester
601 Elmwood Avenue, Box 671 Rochester, NY, 14642
https://www.urmc.rochester.edu/strong-center-developmental-disabilities.aspx


Vocational Rehabilitation
New York State Education Department Adult Career and Continuing Education Services, Vocational Rehabilitation
89 Washington Avenue Albany, NY, 12234
http://www.acces.nysed.gov/vr/


Organizations for Parents
Parent Network of WNY
1000 Main St. Buffalo, NY, 14202
http://parentnetworkwny.org


Community Parent Resource Center United We Stand of New York
91 Harrison Ave Brooklyn, NY 11206
http://www.uwsofny.org


The Family Resource Network, Inc (Serving Otsego, Chenango, Delaware, Broome, Tioga, and Tompkins counties)
46 Oneida Street Oneonta, NY, 13820
http://www.familyrn.org


New York State Parent Teacher Association (PTA)
One Wembley Court Albany, NY, 12205-3830
http://www.nyspta.org


Starbridge
1650 South Avenue, Suite 200 Rochester, NY 14620
http://www.starbridgeinc.org


Parent Training and Information Center (PTI) Advocates for Children of New York (New York City)
151 W. 30th Street, 5th Floor New York, NY, 10001
http://www.advocatesforchildren.org


Include NYC
116 E. 16th Street, 5th Floor New York, NY, 10003
http://www.includenyc.org


Parent Training and Information Center (PTI)
Sinergia/Metropolitan Parent Center
2082 Lexington Ave., 4th Floor New York, NY, 10035
http://www.sinergiany.org


Parent to Parent of NYS
500 Balltown Rd. Schenectady, NY, 12304
http://www.parenttoparentnys.org


Easter Seals New York
633 Third Avenue 6th Floor New York, NY 10017
http://www.ny.easter-seals.org


VSA arts of New York City
45 Main Street, Suite 616 Brooklyn, NY 11201
http://www.vsanyc.org


Variety Club New York
+1 (315) 636-0340

FAQS RESOURCES REGISTER DONATE
Newborn Genetic Screenings

The Power of Newborn Genetic Screenings: How Newborn Genetic Screenings Can Change the Diagnosis

By Penelope Gatlin • 05 Oct, 2023
By Penelope Gatlin October 2023 When our son was born in 2012, he was hypotonic, severely jaundiced, had feeding difficulties and features such as epicanthic folds and small low set ears. We were told immediately that doctors had suspicions of a genetic syndrome. At that time, genetic testing was limited and once abnormal karyotype, Trisomy 21, and Fragile X were ruled out, we left the hospital with an 8 day old and no diagnosis. While no testing was available at that time to identify the ultra-rare syndrome my child had, because it wouldn’t even be identified until 4 years later, I can only imagine the difference it would have made to our journey to have such an answer sooner. Instead, we were unprepared and actually unaware that just because a diagnosis hadn’t been made then that it didn’t mean there wasn’t in fact a rare disease present. Instead, we dealt with issues as they came and worried and wondered what would be next. From feeding issues and reflux and constipation, to low muscle tone and delayed walking, to speech delay, social and emotional delays, toileting delays, diagnoses of developmental delay, anxiety, situational mutism, sensory processing disorder, and autism, until finally genetic testing that revealed the diagnosis that we’d waited 7 years to find out. While receiving a diagnosis can seem scary, not having an answer but knowing there must be one is even more so. In 2019, the day I clicked onto the portal to see the test results, the largest word on the page was POSITIVE. My heart stopped for a second. For the first time, I read the words “Okur-Chung Neurodevelopmental Disorder.” A roller coaster of emotions ensued, including sadness that we hadn’t known this from birth because it would have made us as parents more prepared, and given us more understanding about what might arise next. Relief that we had an answer, grateful that this syndrome had been identified and that he was among one of the first hundred diagnosed with it in the world, and glad we had the privilege to have access to the testing. Excitement that we can participate in future research. Fright that there’s so much we don’t know about OCNDS, and happiness that there is something that we do. A feeling that we are no longer shooting in the dark and have a small but supportive community to rely on and learn from. I am hopeful that one day, all newborns with features like my child will be tested at birth, so parents can have access to the answers, support, and interventions and therapies that can best help their child as soon as possible.
Autism Diagnosis

Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)

By Terri Jordan • 23 Aug, 2023
For 16 years, my child displayed numerous symptoms that left us searching for answers, but a genetic diagnosis remained elusive. I considered having my child evaluated for autism to shed light on their situation. However, when I reached out to teachers, doctors, and therapists, I received frustrating responses: “Your child is too friendly to be autistic.” This statement made me doubt the possibility of autism because my child was sociable. “Your child can transition from one activity to another – they are not autistic.” Hearing this, I questioned whether my child’s ability to shift activities invalidated the need for an autism evaluation. “Your child can look me in the eye and answer questions – they are not autistic.” Observations like this made me second-guess the idea of autism, even though my child faced various challenges. “Getting a diagnosis that does not apply to your child would be a big waste of money.” Despite my persistent concerns, this cautionary advice about the evaluation costs left me hesitant. We finally pursued an evaluation when my son turned 20, and it confirmed that he is indeed on the autism spectrum (severe side). Looking back, I regret not taking this step sooner. I should have pursued the autism diagnosis before we received the genetic diagnosis. There are several benefits we could have gained as a family if we had pursued an early diagnosis: “Early Support Is Crucial:” I now realize that early intervention could profoundly impact my child’s development. We could have accessed the right services and therapies much earlier with a diagnosis. “Understanding My Child Better:” I struggled to comprehend my child’s behaviors and communication difficulties. An earlier diagnosis could have provided insights into their unique needs and thought processes. The education could also help me explain how to react to my child’s behavior to family members. “Tailored Guidance and Resources:” A diagnosis could have opened doors to specialized resources and guidance, enabling me to provide the best possible support for my child. “Connecting with Others:” Being part of the autism community might have connected us with other parents who understand our experiences. Sharing and learning from each other could have been invaluable. “Planning for the Future:” Knowing more about my child’s strengths and challenges could have helped me better plan their future, including education, career, and overall well-being. Depending on your location, many states offer funding and support if your child has an autism diagnosis. I wish I listened to my voice instead of being swayed by experts who didn’t fully understand my child’s situation. Ultimately, I know this decision is significant, requiring careful consideration by parents. Looking back, I wish I had trusted my instincts and sought an evaluation sooner to improve my child’s life.
Share by: