North Carolina

New Carolina

ADA Center
Southeast ADA Center
1419 Mayson Street NE
Atlanta, GA, 30324
http://www.adagreatlakes.org


Assistive Technology


North Carolina Assistive Technology Program
Department of Health and Human Services
Division of Vocational Rehabilitation Services
1110 Navaho Drive, Suite 101
Raleigh, NC, 27609-7322
(800) 662-7030
(919) 855-4800
http://www.ncdhhs.gov


CHIP
(Health care for low-income uninsured children)
Insure Kids Now
7500 Security Blvd.
Baltimore, MD 21244
(877) 543-7669
https://www.insurekidsnow.gov/coverage/nc


CAP/C

Community Alternatives Program for
Children (CAP/C) Amended Waiver
The amendments to the CAP/C waiver are effective May 1, 2020 - Feb. 28, 2022.
https://files.nc.gov/ncdma/documents/Providers/Programs_Services/CAPC/CAPC_waiver_amendmentFact-Sheet_2020.pdf


D D Council
North Carolina Council on Developmental Disabilities
3125 Poplarwood Court, Suite 200,
Raleigh, NC, 27607
(919) 850-2901/(800) 3
http://www.nccdd.org


Developmental Disabilities
Developmental Disability Services Team
Division of Mental Health
Developmental Disabilities and Substance Abuse Services
Department of Health and Human Services
3005 Mail Service Center
Raleigh, NC, 27699-3005
http://www.ncdhhs.gov


Early Intervention
Women’s and Children’s Health Section
Division of Public Health
NC Infant-Toddler Program
1916 Mail Service Center
Raleigh, NC, 27699-1916
(919) 707-5520
http://beearly.nc.gov


Epilepsy
Epilepsy Foundation of North Carolina, Inc.
Piedmont One, Ste 5541 A
1920 W. First Street
Winston Salem, NC 27104
www.epilepsync.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 Shepherd, Suite 1000
Houston, TX, 77019
http://www.ilru.org/projects/cil-net/cil-center-and-association-directory-results/NC


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


Intellectual & Developmental Disabilities
The Arc of North Carolina
343 E. Six Forks Road, Suite 320
Raleigh, NC, 27609
http://www.arcnc.org


Learning Disabilities
Learning Disabilities Association of North Carolina
LDS.of.North.Carolina@gmail.com
https://ldaamerica.org/lda-chapters/north-carolina/


Mental Health
Mental Health Association in North Carolina
3701 Latrobe Drive, Ste 140
Charlotte, NC 28211
www.mhacentralcarolinas.org


NAMI – North Carolina
309 W. Millbrook Road, Suite 121
Raleigh, NC, 27609
http://www.naminc.org


Mediation
North Carolina Department of Public Instruction
Exceptional Children Division
6356 Mail Service Center
Raleigh, NC, 27699-6356
https://ec.ncpublicschools.gov/parent-resources/dispute-resolution


Mental Health
Division of Mental Health
Developmental Disabilities and Substance Abuse Services
Department of Health and Human Services MSC: 3001
Raleigh, NC, 27699-3001
http://www.ncdhhs.gov/mhddsas/index.htm


Mental Health – Youth
Community Policy Management
Division of Mental Health
Developmental Disabilities and Substance Abuse Services
Department of Health and Human Services
3007 Mail Service Center
Raleigh, NC, 27699-3007
http://www.ncdhhs.gov


Parent Organizations
Community Parent Resource Center
(Serving Burke, Caldwell, Catawba, McDowell and Alexander Counties)
HOPE Parent Resource Center
PO Box 11395
Hickory, NC, 28603
http://www.fsnhope.org


Community Parent Resource Center
(Serving Buncombe, Haywood, Henderson, Madison, Polk, Rutherford, Transylvania and Yancey Counties)
F.I.R.S.T.
P.O. Box 802
Asheville, NC, 28802
http://www.FIRSTwnc.org


First in Families of North Carolina
3109 University Drive, Ste 100
Durham, NC 27707
http://www.fifnc.org


NAMI NC Young Families
309 W. Millbrook Road, Suite 121
Raleigh, NC, 27609
www.naminc.org


North Carolina Families United, Inc.
The Center for Youth, Family and Community Partnerships
University of North Carolina at Greensboro
209 B. North Graham Hopedale Rd
Burlington, NC 27127
http://www.ncfamiliesunited.org


Parent Teacher Association (PTA)
North Carolina Congress of Parents and Teachers
3501 Glenwood Avenue
Raleigh, NC, 27612-4934
http://www.ncpta.org


North Carolina Rare Disease Network

The mission of the North Carolina Rare Disease Network is to improve the lives of millions of people with one of the 7000 devastating rare diseases.

Tara Britt, Associate Chair
tjbritt@gmail.com

https://www.med.unc.edu/ncrarediseasenetwork/patient-resources-1/


Parent Training and Information Center (PTI)
ECAC – Exceptional Children’s Assistance Center
907 Barra Row, Suite 102/103
Davidson, NC, 28036
http://www.ECAC-parentcenter.org


Family Support Network of North Carolina
Central Directory of Resources, CB #7340
http://www.fsnnc.org/findlocal


Protection & Advocacy
Disability Rights North Carolina
3724 National Dr., Ste 100,
Raleigh, NC 27612
http://disabilityrightsnc.org/


Relay Services
(800) 735-8262 (V)
(800) 735-2962 (TTY); 711 (TTY)
(877) 735-8261 (Speech to Speech)


Special Education
Exceptional Children Division
Department of Public Instruction
6356 Mail Service Center
Raleigh, NC, 27699-6356
http://www.ncpublicschools.org/ec


Special Format Library
North Carolina Library for the Blind and Physically Handicapped
State Library of North Carolina -Department of Cultural Resources
1811 Capital Boulevard
Raleigh, NC, 27635
http://statelibrary.ncdcr.gov/lbph


Special Health Care Needs
Children and Youth Branch
Women’s and Children’s Health Section
Division of Public Health
Department of Health and Human Services
1928 Mail Service Center
Raleigh, NC, 27699-1928
http://www.ncdhhs.gov


TelAbility
For medical information, telehealth and community resources for children with special needs
1101 Weaver Dairy Road, Suite 202
Chapel Hill, NC, 27514
http://www.TelAbility.org


Speech, Language, and Hearing
North Carolina Speech, Hearing and Language Association
P.O. Box 28359
Raleigh, NC, 27611-8359
http://www.ncshla.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.ncgov.com/


Transition Services
Education and Transition Services
Exceptional Children Division
North Carolina Department of Public Instruction
6356 Mail Service Center
Raleigh, NC, 27699-6356
http://www.ncpublicschools.org/ec/


UCEDD
Carolina Institute for Developmental Disabilities
The University of North Carolina at Chapel Hill
Campus Box 7255
Chapel Hill, NC, 27599-7255
http://www.cidd.unc.edu/


Vocational Education and Rehabilitation
Career and Technical Education
Department of Public Instruction
6359 Mail Service Center
Raleigh, NC, 27699-6359
http://www.ncpublicschools.org


Division of Vocational Rehabilitation Services
Department of Health and Human Services
2801 Mail Service Center
Raleigh, NC, 27699-2801
http://dvr.dhhs.state.nc.us

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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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