Virginia

Virginia

ADA Center
Mid-Atlantic ADA Center

401 North Washington Street, Suite 450
Rockville, MD, 20805

http://www.adainfo.org


Assistive Technology
Virginia Assistive Technology System

8004 Franklin Farms Drive
Richmond, VA, 23229

http://www.vats.org


Autism
Autism Society of Central Virginia

PO Box 29364
Richmond, VA, 23242-0364

http://www.asacv.org


CHIP
(health care for low-income uninsured children)

FAMIS
P.O. Box 1820
Richmond, VA, 23218-1820

www.coverva.org/programs_famis.cfm


D D Council
Virginia Board for People with Disabilities

Ninth Street Office Building
202 N. Ninth Street, 9th Floor
Richmond, VA, 23219

http://www.vaboard.org


Developmental Disabilities
Virginia Department of Behavioral Health & Development Services

1220 Bank St.
Richmond, VA, 23219
(804) 786-3921

http://www.dbhds.virginia.gov/


Early Intervention
Infant & Toddler Connection of Virginia
Virginia Department of Behavioral Health and Developmental Services

P.O. Box 1797
Richmond, VA, 23219-1797

http://www.infantva.org/


Epilepsy
Epilepsy Foundation of Virginia

560 Ray C Hunt Dr.
Charlottesville, VA, 22903
(434) 924-8669
SRB3M@virginia.edu

https://www.epilepsyva.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

http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/VA


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

http://www.ncil.org


Learning Disabilities
Learning Disabilities Association of Virginia

3914 Monument Avenue
Richmond, VA, 23230-3902

http://www.ldavirginia.org


Mediation
Virginia Department of Education
Complaints, Mediation, Due Process

P.O. Box 2120
Richmond, VA, 23218-2120

http://www.doe.virginia.gov/special_ed/resolving_disputes/


Mental Health
Department of Mental Health

1220 Bank St.
Richmond, VA, 23219
(804) 786-3921

http://www.dbhds.virginia.gov/


Mental Health America of Virginia
2008 Bremo Rd, Ste 101
Richmond, VA 23226

http://www.mhav.org


NAMI Virginia
P.O. Box 8260
Richmond, VA, 23226-0260
(804) 285-8264/(800) 950-6264

https://namivirginia.org/


Mental Health – Youth
Virginia Department of Behavioral Health & Development Services

1220 Bank St.
Richmond, VA, 23219
(840) 786-3921

http://www.dbhds.virginia.gov/


Parent Organizations
Community Parent Resource Center
(Serving Arlington, Fairfax, Loudon, and Prince William Counties, and city of Alexandria)
Formed Families Together

4031 University Drive, Suite 100
Fairfax, VA, 22030

http://www.formedfamiliesforward.org


The ARC of Virginia 
2147 Staples Mill Rd.
Richmond, VA, 23230
(804) 649-8481/(888) 604-2677
thearcofva@thearcofva.org

http://www.thearcofva.org/


Parent’s Guide to Special Education
Virginia Department of Education

http://www.doe.virginia.gov/special_ed/parents/parents_guide.pdf 

http://www.doe.virginia.gov/special_ed/parents/


Virginia Parent Teacher Association (PTA)
1027 Wilmer Avenue
Richmond, VA, 23227

http://www.vapta.org


Parent Training and Information Center (PTI)
Parent Educational Advocacy Training Center (PEATC)

100 N. Washington Street, Suite 234
Falls Church, VA, 22046

http://www.peatc.org/


Parent to Parent of Virginia
P.O. Box 38341
Richmond, VA, 23231
PTPofVA@aol.com

https://ptpofva.wordpress.com/


Virginia Federation of Families (a program of the Arc of VA)
2025 E. Main Street, Suite 107
Richmond, VA, 23223

http://www.medicalhomeplus.org


Preschool, Disabilities
Special Education Instructional Services
Virginia Department of Education

P.O. Box 2120
Richmond, VA, 23218-2120

http://www.doe.virginia.gov


Protection & Advocacy
Disability Law Center for Virginia

1910 Byrd Avenue, Suite 5
Richmond, VA, 23230

http://www.dlcv.org


Relay Services
(800) 828-1140 (V)
(800) 828-1120 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)


Special Education
Division of Special Education and Student Services
Department of Education

P.O. Box 2120
Richmond, VA, 23218-2120

http://www.doe.virginia.gov/special_ed/


Speech, Language, and Hearing
Speech-Language-Hearing Association of Virginia, Inc.

3126 W. Cary Street, #436
Richmond, VA, 23221

http://www.shav.org


Special Format Library
Virginia Library and Resource Center

395 Azalea Avenue
Richmond, VA, 23227

http://www.vdbvi.org/


Special Health Care Needs
Virginia Department of Health

109 Governor St.
Richmond, VA, 23219
Division of Child and Adolescent Health

http://www.vdh.virginia.gov/


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:

https://www.virginia.gov/


UCEDD
Partnership for People with Disabilities
Virginia University Center for Excellence
Virginia Commonwealth University
PO Box 843020
700 E. Franklin Street
Richmond, VA, 23284-3020

http://www.vcu.edu/partnership


Vocational Education and Rehabilitation
Education Services Manager
Virginia Department of Rehabilitative Services

Richmond, VA, 23229

http://www.vadrs.org


Office of Career and Technical Education Services
Virginia Department of Education

http://www.pen.k12.va.us/instruction/career_technical/index.shtml


Medical Home Plus
8719 Forest Hill Avenue
Bon Air, VA 23235

www.medicalhomeplus.org


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Newborn Genetic Screenings
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
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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