Delaware

DELAWARE

ADA Center

Mid-Atlantic ADA Center

401 North Washington Street, Suite 450

Rockville, MD, 20805

(800) 949-4232 (V/TTY)

(301) 217-0124 (V/TTY)

http://www.adainfo.org


Assistive Technology

Delaware Assistive Technology Initiative

461 Wyoming Road

Newark, DE, 19716

(800) 870-3284 (in DE)

(302) 651-6790

(302) 831-0354 (TTY)

dati@asel.udel.edu

http://www.dati.org


CHIP Program

(health care for low-income uninsured children)

Delaware Healthy Children Program

P.O. Box 950

New Castle, DE, 19720-9914

(800) 996-9969

http://www.state.de.us/dhss/dss/


D D Council

Delaware Developmental Disabilities Council

Margaret M. O’Neill Building, 2nd Floor

410 Federal Street, Suite 2

Dover, DE, 19904

(302) 739-3333

pat.maichle@state.de.us

http://www.ddc.delaware.gov


Developmental Disabilities

Division of Developmental Disabilities Services

Delaware Health and Social Services

1056 S. Governors Avenue, Suite 101

Dover, DE, 19904

(302) 744-9600

dhssinfo@state.de.us

http://www.state.de.us/dhss/ddds/index.html


Early Intervention

Birth to Three Early Intervention System

Department of Health and Social Services

1901 N. DuPont Highway

New Castle, DE, 19720

(302) 255-9135

rosanne.griff-cabelli@state.de.us

http://www.state.de.us/dhss/dms/epqc/birth3/directry.html


Epilepsy

Epilepsy Foundation of Delaware

Tower Office Park

240 N. James Street, Suite 104

Newport, DE, 19804

(877) 369-2266

(302) 999-9313

efd@efde.org

http://epilepsy.com/delaware


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

1333 Moursond

Houston, TX, 77030

(713) 520-0232 (V)

(713) 520-5136 (TTY)

ilru@ilru.org

http://www.ilru.org


To find out the contact information for centers for independent living (CILs) in your state, contact: National Council on Independent Living

2013 H Street NW – 6th Floor

Washington, DC, 20006

(202) 207-0334 (V)

(202) 207-0340 (TTY)

ncil@ncil.org

http://www.ncil.org


Intellectual & Developmental Disabilities

The Arc of Delaware

2 S Augustine St., Suite B

Wilmington, DE, 19804

(302) 996-9400/(844) 344-6524

http://www.thearcofdelaware.org/


Mediation

Council for Exceptional Children

2900 Crystal Dr., Suite 100

Arlington, VA 22202

(888) 232-7733

(302) 735-4210

https://www.doe.k12.de.us


Mental Health

Division of Substance Abuse and Mental Health

Delaware Health and Social Services

Main Administration Building

1901 N. DuPont Highway

New Castle, DE, 19720

(302) 255-9399

https://dhss.delaware.gov/dsamh/


Mental Health Association in Delaware

100 W. 10th Street, Suite 600

Wilmington, DE, 19801

(800) 287-6423 (In DE)

(302) 654-6833

information@mhainde.org

http://www.mhainde.org


Mental Health – Children

Division of Child Mental Health Services

Department of Services for Children, Youth, and Their Families

1825 Faulkland Road, Building 1

Wilmington, DE, 19805-1195

(302) 633-2600

PBHS.DSCYF@state.de.us

http://kids.delaware.gov/pbhs/pbhs.shtml


Organizations for Parents

Parent Information Center of Delaware (PIC)

404 Larch Circle

Wilmington, DE, 19804

(888) 547-4412

(302) 999-7394

http://www.picofdel.org


Parent Teacher Association (PTA)

Delaware Congress of Parents and Teachers

925 Bear-Corbitt Road, Suite 101

Bear, DE, 19701

(302) 838-8770

de_office@pta.org

http://www.delawarepta.org


P2P at Delaware Family Voices

61 Corporate Circle

New Castle, DE, 19720

(302) 221-5360

annp@defv.org

http://defv.org


Preschool, Disabilities

Council for Exceptional Children

2900 Crystal Dr., Suite 100

Arlington, VA 22202

(888) 232-7733

https://www.doe.k12.de.us


Protection & Advocacy

Community Legal Aid Society, Inc.

Community Service Building

100 W. 10th Street, Suite 801

Wilmington, DE, 19801

(302) 575-0660

http://www.declasi.org


Partners in Policymaking of Delaware

Developmental Disabilities Council

Margaret M. O’Neill Building, 2nd Floor

410 Federal Street, Suite 2

Dover, DE, 19901

(302) 739-3333

http://ddc.delaware.gov/


Special Format Library

Delaware Division of Libraries

Library for the Blind and Physically Handicapped

43 S. DuPont Highway

Dover, DE, 19901

(V/TTY)(800) 282-8676

(302) 739-4748

john.phillos@state.de.us

http://libraries


Special Health Care Needs

Children with Special Health Care Needs

Bureau of Maternal and Child Health

Division of Public Health

417 Federal Street

Dover, DE, 19901

(800) 464-4357 (Helpline)

(302) 741-2980

https://www.dhss.delaware.gov/dph/chca/dphcshcn.html


Division of Public Health & duPont Hospital for Children

Office of EMS

Blue Hen Corporate Center

655 Bay Road, Suite 4H

Dover, DE, 19901

(302) 744-5410

www.dhss.delaware.gov/dph/ems/ems.html


Delaware Family Voices

222 Philadelphia Pike, Suite 11

Wilmington, DE 19809

(302) 669-3030/(877) 235-3588

psp@defv.org

http://www.delawarefamilytofamily.org/


Speech, Language, and Hearing

Delaware Speech-Language-Hearing Association

P.O. Box 7383

Newark, DE, 19711

dshaweb@dsha.org

http://dsha.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.de.gov/


UCEDD

Center for Disabilities Studies

College of Education and Human Development

University of Delaware

461 Wyoming Road

Newark, DE, 19716

(302) 831-6974

(302) 831-4689 (TTY)

mineo@udel.edu

http://www.udel.edu/cds


Vocational Rehabilitation

(302) 577-8400

Check website for local offices

http://www.dvr.delawareworks.com


State Council for Persons with Disabilities

Margaret M. O’Neill Building

P.O. Box 1401

Dover, DE, 19903

http://www.scpd.delaware.gov


Governor’s Ad Council

516 W Loockerman Street

Dover, DE, 19904

(302) 739-4553

http://gacec.delaware.gov/


Easter Seals Delaware and Maryland’s Eastern Shore

61 Corporate Circle

New Castle, DE, 19720

(800) 677-3800

(302) 324-4444

preuther@esdel.org

http://www.de.easterseals.com

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: