Connecticut

CONNECTICUT

ADA Center

New England ADA Center

180-200 Portland Street, Suite 1

Boston , MA , 02114

(800) 949-4232 V/TTY)

(617) 695-0085 (V/TTY)

adainfo@newenglandada.org

http://www.newenglandada.org


Assistive Technology

Connecticut Tech Act Project (CTTAP)

55 Farmington Ave., 12th Floor

Hartford, CT 06105

(800) 537-2549 (in CT)

(860) 424-4881

(860) 424-4839 (TTY)

http://cttechact.com/#sthash.L4dfJrZ1.dpbs


CHIP Program

(Health care for low-income uninsured children)

HUSKY Plan

c/o Department of Social Services

55 Farmington Ave.

Hartford, CT 06105–3730

(877) 284-8759

http://www.ct.gov/hh/site/default.asp


DD Council

Connecticut Council on Developmental Disabilities

460 Capitol Avenue

Hartford , CT , 06106-1308

(800) 653-1134 (in CT)

(860) 418-6160

(860) 418-6172 (TTY)

Molly.Cole@ct.gov

http://www.ct.gov/ctcdd/site/default.asp


Developmental Disabilities

Department of Developmental Services (DDS)

460 Capitol Avenue

Hartford , CT , 06106

(860) 418-6000

ddsct.co@ct.gov

http://www.ct.gov/dds


Early Intervention

Connecticut Birth to Three System

Department of Developmental Services

460 Capitol Avenue

Hartford , CT , 06106-1308

(800) 505-7000

http://www.birth23.org


Epilepsy

Epilepsy Foundation of Connecticut, Inc.

386 Main Street

Middletown , CT , 06457

(800) 899-3745

(860) 346-1924

efct@sbcglobal.net

http://www.epilepsyct.com


Independent Living

Connecticut Association of Centers for Independent Living

151 New Park Avenue

Hartford , CT , 06106

(860) 656-0430

gwaterhouse@cacil.net

http://www.cacil.net


Intellectual & Developmental Disabilities

The ARC of Connecticut

200 Research Pkwy

Meriden, CT, 06450

(203) 514-3028

https://thearcct.org/


Mediation

Connecticut Department of Education

Bureau of Special Education

Due Process Unit

165 Capitol Avenue

Hartford , CT , 06106-1630

(860) 713-6935

https://portal.ct.gov/SDE/Special-Education/Bureau-of-Special-Education/Legal-and-Due-Process


Mental Health

Mental Health Connecticut

61 S. Main St., Suite 100

West Hartford, CT 06107

(860) 529-1970

info@mhconn.org

http://www.mhconn.org/contact/


NAMI Connecticut

576 Farmington Avenue

Hartford , CT , 06105

(800) 215-3021

(860) 882-0236

namicted@namict.org

http://www.namict.org


Mental Health – Youth

Department of Children and Families

505 Hudson Street

Hartford , CT , 06106

(800) 842-2288 (in CT)

(860) 550-6683

commissioner.dcf@ct.gov

https://portal.ct.gov/dcf


Parent Resources

AFCAMP, Hartford-New Haven CPRC

60 Weston St., Ste B

Hartford , CT , 06120

(860) 548-9959

http://www.afcamp.org


Parent Teacher Association (PTA)

Connecticut Parent-Teachers Association

Wilbur Cross Commons Building, Suite 12

60 Connolly Parkway

Hamden , CT , 06514-2519

(203) 281-6617

office@ctpta.org

http://www.ctpta.org


Parent Training and Information Center (PTI)

Connecticut Parent Advocacy Center (CPAC)

338 Main Street

Niantic , CT , 06357

(800) 445-2722 (in CT)

(860) 739-3089

cpac@cpacinc.org

http://www.cpacinc.org


Parent-to-Parent

PATH Parent to Parent of CT

P.O. Box 117

Northford , CT , 06472

(800) 399-7284 (in CT)

(203) 234-9554

nanfi@aol.com

http://www.pathct.org


Preschool, Disabilities

State Department of Education

165 Capitol Avenue

Hartford , CT , 06106

(860) 713-6543

http://www.sde.ct.gov


Protection & Advocacy

Office of Protection & Advocacy for Persons with Disabilities

60 B Weston Street

Hartford , CT , 06120-1551

(800) 842-7303 (V/TTY in CT)

(860) 297-4300

(860) 297-4380 (TTY)

http://www.ct.gov/opapd


Special Education

Bureau of Special Education

Department of Education

165 Capitol Avenue, Room 360

Hartford , CT , 06106

(860) 713-6912

http://portal.ct.gov


Special Format Library

Connecticut State Library

Library for the Blind and Physically Handicapped

198 West Street

Rocky Hill , CT , 06067

(800) 842-4516

(860) 721-2020

http://ctstatelibrary.org/lbph/


Special Health Care Needs

Connecticut Department of Public Health

410 Capitol Ave.

Hartford, CT 06134

(860) 509-8074

http://www.ct.gov/dph/cwp/view.asp?a=3138&Q=387702&PM=1


Speech, Language, and Hearing

Connecticut Speech-Language-Hearing Association

124 Kennerson Road

Eastford , CT , 06242

(860) 666-6900

csha@ctspeechhearing.org

http://www.ctspeechhearing.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.ct.gov/


Transition Services

Bureau of Special Education

Department of Education

165 Capitol Avenue

P.O. Box 2219

Hartford , CT , 06145-2219

(860) 713-6923

patricia.anderson@ct.gov

http://www.sde.ct.gov/sde


UCEDD

A.J. Pappanikou UCEDD

263 Farmington Avenue, MC6222

Farmington , CT , 06030-6222

(866) 623-1315

(860) 679-1500

(860) 679-1502 (TTY)

contactus@ uconnucedd.org

http://www.uconnucedd.org


Vocational Rehabilitation

Department of Rehabilitation Services

55 Farmington Ave., 12th Fl.

Hartford, CT 06105

http://www.ct.gov/dors/site/default.asp


WeCAHR (Western Connecticut Association for Human Rights)

325 Main Street

Danbury , CT , 06810

(203) 792-3540

ptomka@wecahr.org

http://www.wecahr.org


Easter Seals Connecticut

733 Summer Street – suite 104

Stamford , CT , 06901

(203) 388-2196

dshugrue@eastersealsct.org

http://www.ct.easterseals.com


The Special Kids Support Center

Connecticut Children’s Medical Center

282 Washington Street

Hartford , CT , 06106

(877) 545-1944 (in CT)

(860) 545-9000

http://www.ccmckids.org


Disabilities Network of Eastern Connecticut

19 Ohio Avenue – suite 2

Norwich , CT , 06360

(860) 823-1898

http://www.dnec.org

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.
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