New Jersey

New Jersey

ADA Center
Northeast ADA Center
Employment and Disability Institute
Cornell University
201 Dolgen Hall
Ithaca, NY, 14853
(800) 949-4232 (V/TTY/Spanish)
(607) 255-6686 (V/TTY/Spanish)
northeastada@cornell.edu
http://www.northeastada.org


Autism
The Daniel Jordan Fiddle Foundation
P.O. Box 1149
Ridgewood, NJ, 07451-1149
(609) 588-8200 Ext 22
(800) 4-autism
info@ djfiddlefoundation.org
http://www.djfiddlefoundation.org


Autism New Jersey
500 Horizon Drive, Suite 530
Robbinsville Township, NJ, 08691
(609) 588-8200, Ext. 22
(800) 4-AUTISM
information@autismnj.org
http://www.autismnj.org


POAC (Parents of Autistic Children)
1999 Route 88
East Brick, NJ, 08724
(732) 785-1099
info@poac.net
http://www.poac.net


FACES Autism Support Network
PO Box 2341
Ventnor, NJ, 08406
(609) 412-3750
facesgroup@comcast.net
http://faces4autism.org/


CHIP
(health care for low-income uninsured children)
New Jersey Family Care
P.O. Box 8367
Trenton, NJ, 08650-4818
(800) 701-0710
http://www.njfamilycare.org


D D Council
New Jersey Council on Developmental Disabilities
20 W. State St.
Trenton, NJ, 08625
(609) 292-3745
njcdd@njcdd@org
https://njcdd.org/


Developmental Disabilities
Division of Developmental Disabilities
New Jersey Department of Human Services
P.O. Box 726
Trenton, NJ, 08625-0726
(609) 631-2200
(800) 832-9173
kenneth.ritchey@dhs.state.nj.us
http://www.state.nj.us/humanservices/ddd/home/


Early Intervention
Department of Health and Senior Services
Division of Family Health Services
Early Intervention System
50 E. State Street
P. O. Box 364
Trenton, NJ, 08625-0364
(888) 653-4463 (NJEIS Referral)
(609) 777-7734
(800) 322-8174 (Childfind Birth-21)
www.njeis.org


Epilepsy
Epilepsy Foundation of New Jersey
1 AAA Drive
Suite 203
Trenton, NJ, 08691
(800) 336-5843
(609) 392-4900
http://www.efnj.com


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
(713) 520-0232 (V)
(713) 520-5136 (TTY)
ilru@ilru.org
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory


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


National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V)
(202) 207-0340 (TTY)
ncil@ncil.org
http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc of New Jersey
985 Livingston Avenue
North Brunswick, NJ, 08902-1843
(732) 246-2525
info@arcnj.org
http://www.arcnj.org


Learning Disabilities
Learning Disabilities Association of New Jersey
P.O. Box 6268
East Brunswick, NJ, 08816
(732) 645-2738
info@ldanj.org
http://www.ldanj.org


Mediation
Office of Special Education Programs
New Jersey Department of Education
100 Riverview Plaza
P.O. Box 500
Trenton, NJ, 08625-0500
(609) 984-1286
877-900-6960
http://www.state.nj.us/education/


Mental Health
New Jersey Department of Human Services
Division of Mental Health and Addiction Services
Check website for specific phone numbers
DMHAS@dhs.state.nj.us
http://www.state.nj.us/humanservices/dmhas/home/


Mental Health Association in New Jersey
88 Pompton Avenue, Suite 1
Verona, NJ, 07044
(973) 571-4100
info@mhanj.org
http://www.mhanj.org


NAMI New Jersey
1562 Route 130
North Brunswick, NJ, 08902
(732) 940-0991
info@naminj.org
https://www.naminj.org/


Mental Health – Youth
New Jersey Department of Children and Families
PO Box 729
Trenton, NJ, 08625-0729
(855) 463-6323
http://www.nj.gov/dcf/about/divisions/dcsc/


Preschool, Disabilities
Office of Special Education Programs
New Jersey Department of Education
100 Riverview Plaza
P. O. Box 500
Trenton, NJ, 08625-0500
(609) 984-4950
special.education@doe.state.nj.us
http://www.state.nj.us/


Parent Organizations
Special Parent Assistance & Resource Center (SPARC)
UCP of Hudson County, Inc.
721 Broadway
Bayonne, NJ, 07002
(201) 436-2200
http://ucpofhudsoncounty.org


New Jersey Parents Caucus
275 Rt 10 East, Suite 220-414
Succasunna, NJ 07876
(908) 994-7471
http://www.newjerseyparentscaucus.org


Parent Teacher Association (PTA)
New Jersey Congress of Parents and Teachers
8 Quackerbridge Plaza
Mercervile, NJ 08619
(609) 587-0100
njpta@njpta.org
http://www.njpta.org


Parent Training and Information Center (PTI)
Statewide Parent Advocacy Network (SPAN)
35 Halsey Street, 4th Floor
Newark, NJ, 07102
(800) 654-7726 (In NJ)
(973) 642-8100
span@spannj.org
http://www.spanadvocacy.org


New Jersey Statewide Parent-to-Parent
1010 B Tuckerton Rd.
Marlton, NJ 08053
(856) 983-3328
http://www.parent2parentnj.org/


Community Parent Resource Center
Association for Special Children & Families
PO Box 494
Hewitt, NJ, 07421
(973) 728-8744
http://www.ascfamily.org


Protection & Advocacy
Disability Rights New Jersey
210 S. Broad Street, 3rd Floor
Trenton, NJ, 08608
(800) 922-7233 (in NJ)
(609) 292-9742
(609) 633-7106 (TTY)
advocate@drnj.org
http://www.drnj.org


Relay Services
State: New Jersey
(800) 852-7897 (V)
(800) 852-7899 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)


Special Education
Office of Special Education Programs
New Jersey Department of Education
100 Riverview Plaza
P. O. Box 500
Trenton, NJ, 08625-0500
(609) 292-0147
(877) 900-6960
http://www.state.nj.us/education


Special Format Library
New Jersey Library for the Blind and Handicapped
2300 Stuyvesant Avenue
Trenton, NJ, 08618
(800) 792-8322
(609) 530-3239
njlbh@njstatelib.org
http://www.njlbh.org/


Special Health Care Needs
Special Child Health and Early Intervention Services
Division of Family Health
Public Health Services Branch
New Jersey Department of Health and Senior Services
P.O. Box 364
Trenton, NJ, 08625-0364
(609) 984-0755
gloria.rodriguez@doh.state.nj.us
www.state.nj.us/health/fhs/sch/index.shtml


Family Voices of New Jersey, at SPAN
35 Halsey Street, 4th floor
Newark, NJ, 07102
(800) 654-SPAN, ext. 110
(973) 642-8100
span@spannj.org
http://www.familyvoices.org


Speech Language and Hearing
New Jersey Speech-Language Hearing Association
66 Witherspoon St, Suite 337
Princeton, NJ 08542
(888) 906-5742
info@njsha.com
http://www.njsha.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.state.nj.us/


Transition Services
Office of Special Education Programs
New Jersey Department of Education
Riverview Executive Plaza
Building 100 Route 29
P.O. Box 500
Trenton, NJ, 08625
(609) 633-6431
http://www.state.nj.us/education


UCEDD
The Boggs Center on Developmental Disabilities
Department of Pediatrics
Rutgers Robert Wood Johnson Medical School
335 George Street, Suite 3500
New Brunswick, NJ, 08901
(732) 235-9300
http://rwjms.rutgers.edu/boggscenter


Vocational Education and Rehabilitation
Office of Career and Technical Education
New Jersey Department of Education
100 Riverview Plaza
P. O. Box 500
Trenton, NJ, 08625-0500
(609) 633-0665
http://nj.gov/education/cte/


New Jersey Division of Labor and Workforce Development
1 John Fitch Plaza
Trenton, NJ 08625-0110
constituent.relations@dol.nj.gov
http://careerconnections.nj.gov/careerconnections/plan/foryou/disable/vocational_rehabilitation_services.shtml


Alliance for the Betterment of Citizens with Disabilities
127 Route 206, Suite 18
Hamilton, NJ, 08610
(609) 581-8375
http://www.abcdnj.org


Easter Seals New Jersey
25 Kennedy Blvd, Ste 600
East Brunswick, NJ 08816
(800) 486-0027
(732) 257-6662
http://www.eastersealsnj.org


Family Support Center of New Jersey
35 Beaverson Blvd
Brick, NJ 08723
(800) 372-6510 (in NJ)
(732) 528-8080
http://www.fscnj.org


New Jersey Mentor
Rehabilitative and Support Services for Persons with Acquired Brain Injury
505 S. Lenola Road
Blason Office Plaza II, Suite 217
Moorestown, NJ, 08057
(856) 235-5505
paula.blum@thementornetwork.com
http://www.thementornetwork.com


New Jersey Self-Help Group Clearinghouse
(free help to those seeking to find or start a local or national
support group)
375 E. McFarlan Street
Dover, NJ, 07801
(800) 367-6274 (in NJ)
(973) 989-1122
ed@selfhelpgroups.org
http://www.njgroups.org


VSA arts of New Jersey
703 Jersey Avenue
New Brunswick, NJ, 08901
(732) 745-3885
(732) 745-3913 (TTY)
info@vsanj.org
http://www.vsanj.org


Variety - the Children's Charity of Jersey
Maufant Variety Youth Centre
La Grand Route de St Martin
St Saviour
Jersey
JE2 7GT
Telephone: (01534) 856937
Email: admin@varietyjersey.org.je
https://www.varietyjersey.org.je/

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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.
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