Vermont

Vermont

ADA
New England ADA Center

180-200 Portland Street, Suite 1
Boston, MA, 02114

http://www.newenglandada.org


Assistive Technology
Vermont Assistive Technology Project

HC 2 South
280 State Drive
Waterbury, VT, 05671

http://atp.vermont.gov/index.php


CHIP (health care for low-income uninsured children)
https://portal.healthconnect.vermont.gov/VTHBELand/welcome.action


D D Council
Vermont Developmental Disabilities Council

322 Industrial Lane
Berlin, Vermont 05633-0206

http://ddc.vermont.gov


Developmental Disabilities
Division of Developmental Services

Department of Disabilities, Aging and Independent Living
HC 2 South, 280 State Drive
Waterbury VT 05671-2030

http://dail.vermont.gov


Early Intervention
Department for Children and Families

Child Development Division
NOB 1 North
280 State Drive
Waterbury, VT 05671-1040

http://dcf.vermont.gov/cdd


Epilepsy
Epilepsy Foundation of Vermont

P.O. Box 6292
Rutland, VT 05702

http://www.epilepsyvt.org

 

Independent Living
Vermont Center for Independent Living

11 E. State Street
Montpelier, VT, 05602-3008

http://www.vcil.org


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


Mediation -Vermont Agency of Education

219 North Main Street, Suite 402
Barre, VT 05641

https://education.vermont.gov/student-support/special-education/laws-and-regulations/dispute-resolution


Mental Health
Department of Mental Health

Agency of Human Services
P.O. Box 70
108 Cherry Street
Burlington, VT, 05402-0070

http://www.healthvermont.gov


Mental Health America ( to identify an NMHA chapter in your state )
500 Montgomery Street, Suite 820
Alexandria, VA, 22314-2971

http://www.mentalhealthamerica.net


NAMI Vermont
600 Blair Park Road, Suite 301
Williston VT 05495

http://www.namivt.org


Vermont Federation of Families for Children’s Mental Health
600 Blair Park Road
Williston VT 05495

http://www.vffcmh.org


Mental Health – Youth
Department of Mental Health
108 Cherry Street
P.O. Box 70
Burlington, VT, 05402-0070

http://www.healthvermont.gov


Parent Organizations
Parent Teacher Association (PTA)

Vermont Congress of Parents and Teachers
82 Overlake Drive
Milton, TB 05468
(802) 644-6652

https://www.facebook.com/VermontStatePTA


Parent Training and Information Center (PTI)
Vermont Family Network

600 Blair Park Road, Suite 240, Williston, VT, 05495
Or
135 North Main St Suite #4, Rutland, VT 05701

http://www.vermontfamilynetwork.org


Preschool, Disabilities
Vermont Agency of Education

219 N. Main St., Suite 402
Barre, VT 0564
(802) 479-1030
aoe.edinfo@vermont.gov

http://education.vermont.gov/student-support/special-education


Protection & Advocacy
Disability Rights Vermon
t
141 Main Street, Suite 7, Montpelier, VT, 05602
OR
1 Scale Ave., Suite 23, Howe Center, Bldg. 14, Rutland, VT 05701

http://www.disabilityrightsvt.org


Relay Services
(800) 253-0195 (V)
(800) 253-0191 (TTY); 711 (TTY)
(800) 229-5746 (Speech to Speech – English)
(866) 260-9470 (Speech to Speech – Spanish)


Special Education
Vermont Agency of Education

219 North Main Street, Suite 402
Barre, VT 05641

http://www.state.vt.us/educ/new/html/pgm_sped.html


Special Format Library
Vermont Department of Libraries

Special Services Unit
578 Paine Turnpike N
Berlin, VT, 05602
lib.ssu@vermont.gov
(802) 828-3273/(800) 479-1711

http://libraries.vermont.gov/library_for_the_blind/application


Special Health Care Needs
Children with Special Health Needs

Department of Health
108 Cherry Street
P.O. Box 70
Burlington, VT, 05402

http://www.healthvermont.gov/family/cshn/cshn.aspx


Speech, Language, and Hearing
Vermont Speech-Language-Hearing Association

http://www.vsha.us


State Web Site
Connect with your state’s official website to find all manner of state agencies and information, including how to contact to your governor and/or your representatives in the Senate and House:

http://www.vermont.gov/portal


Transition Services
University of Vermont

Burlington, VT 05405
(802) 656-3131

http://www.med.uvm.edu/vchip/yit


UCEDD
Center on Disability and Community Inclusion
The UCEDD of Vermont/University of Vermont
College of Education and Social Services

Mann Hall – 3rd Floor
208 Colchester Avenue
Burlington, VT, 05405-1757

http://www.uvm.edu/~cdci


Vocational
Vocational Rehabilitation Division
Department of Aging and Independent Living

Agency of Human Services
HC 2 South, 280 State Dr.
Waterbury, VT 05671-2040

http://www.vocrehab.vermont.gov


Addison County Parent Child Center
126 Monroe St
Middlebury, VT, 05753

http://www.addisoncountypcc.org


Vermont Coalition for Disability Rights
11 East State St., Suite 2
Montpelier, VT, 05602

http://www.vcdr.org


VSA arts of Vermont
21 Carmichael St Suite 206
Essex Junction, VT 05452

http://www.vsavt.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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