New Hampshire

New Hampshire

ADA Center
New England ADA Center

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

http://www.newenglandada.org


Assistive Technology
Institute on Disability/UCED

10 W. Edge Dr., Suite 101
Durham, NH, 03824
(603) 862-4320

https://iod.unh.edu/projects/assistive-technology-new-hampshire-atinnh


Career & Technical Education
New Hampshire Department of Education

Bureau of Career Development
101 Pleasant Street
Concord, NH

http://www.education.nh.gov/career/career/index.htm


D D Council
New Hampshire Council on Developmental Disabilities

2 1/2 Beacon Street
Concord, NH 03301-4447

http://www.nhcdd.org


Developmental Disabilities
Bureau of Developmental Services

129 Pleasant Street
Concord, NH, 03301

http://www.dhhs.nh.gov


Early Intervention
Family-Centered Early Supports and Services

Bureau of Developmental Services
129 Pleasant Street
Concord, NH, 03301

http://www.dhhs.nh.gov/dcbcs/bds/earlysupport/index.htm


Epilepsy
Epilepsy Foundation New England

PO Box 1336
Meredith, NH 0325

http://www.epilepsynewengland.org


Health Insurance
https://www.healthinsurance.org/new_hampshire-state-health-insurance-exchange/


Independent Living
New Hampshire Statewide Independent Living Council

c/o Governor’s Commission on Disability
57 Regional Drive
Concord, NH, 03301

http://www.nh.gov/disability/silc


Granite State Independent Living
21 Chenell Drive
Concord, NH, 03301

http://www.gsil.org


Mediation
New Hampshire Department of Education
Office of Legislation and Hearings

101 Pleasant Street
Concord, NH, 03301

http://www.education.nh.gov/legislation/hearings.htm


Mental Health
Bureau of Behavioral Health

List of Community Health Centers
105 Pleasant Street
Concord, NH, 03301

http://www.dhhs.nh.gov/dcbcs/bbh/centers.htm


Granite State Federation of Families for Children’s Mental Health
c/o ACS

340 Commercial Street, 2nd Floor
Manchester, NH, 03101

http://www.nh4youth.org/families-youth/granite-state-federation-families-childrens-mental-health


NAMI New Hampshire
(National Alliance on Mental Illness New Hampshire)

15 Green Street
Concord, NH, 03301

http://www.naminh.org


Parent Organizations
Parent Teacher Association (PTA)

New Hampshire PTA
24 Maxwell Drive
Derry, NH  03038

http://www.nhpta1.org


Parent Information Center (PIC)
54 Old Suncook Road
Concord, NH 03301

http://www.picnh.org


Preschool, Disabilities
Bureau of Special Education

New Hampshire Department of Education
101 Pleasant Street
Concord, NH, 03301

http://education.nh.gov/instruction/special_ed/preschool.htm


Protection & Advocacy
Disabilities Rights Center, Inc.

64 North Main Street, Suite 2, 3rd Floor
Concord, NH 03301

http://www.drcnh.org


Relay Services
(800) 735-2964 (V/TTY); 711 (TTY)
(877) 735-1245 (Speech to Speech)


Special Education
Bureau of Special Education

New Hampshire Department of Education
101 Pleasant Street
Concord, NH, 03301

http://education.nh.gov/instruction/special_ed/index.htm


Special Format Library
Talking Book Services, New Hampshire State Library

117 Pleasant Street
Concord, NH, 03301

http://www.nh.gov/nhsl/talking_books


Special Health Care Needs
New Hampshire Family Voices

129 Pleasant St.
Concord, NH, 03301

http://www.nhfv.org


Speech, Language, and Hearing
New Hampshire Speech-Language-Hearing Association, Inc.

P.O. Box 1538
Concord, NH, 03302-1538

http://www.nhslha.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.nh.gov


UCEDD
Institute on Disability/UCED

57 Regional Drive, Unit 8
Concord, NH, 03301

http://www.iod.unh.edu/Home.aspx


Vocational Rehabilitation
New Hampshire Department of Education

21 S. Fruit Street, Suite 20
Concord, NH, 03301

http://education.nh.gov/career/vocational/contact.htm


Governor’s Commission on Disability
121 South Fruit Street, Suite 101
Concord, NH, 03301-8518

http://www.nh.gov/disability


Easter Seals New Hampshire
555 Auburn Street
Manchester, NH, 03103

http://www.eastersealsnh.org


Education-A-Must (advocacy services for children with disabilities)
P.O. Box 216
East Derry, NH, 03041-0216

http://www.education-a-must.com


New Hampshire Challenge
P.O. Box 579
Dover, NH, 03821-0579

http://www.nhchallenge.net


VSA arts of New Hampshire
P.O. Box 78
Wentworth, NH, 03282

http://www.vsaartsnh.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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