Massachusetts

Massachusetts

ADA Center
New England ADA Center

200 Portland St
Boston, MA 02114
1-800-949-4232 (voice/TTY)
ADAinfo@NewEnglandADA.org

https://www.newenglandada.org/


Massachusetts Technology Assistance Resource Team (MASSTART)
250 Washington Street
Boston, MA 02108
(781) 223-2731

stephanie.porter@childrens.harvard.edu

https://www.mass.gov/service-details/learn-about-masstart


CHIP
(health care for low-income uninsured children)
MassHealth

100 Hancock Street, 6th floor
Quincy, MA 02171
Phone: 
(800) 841-2900   TTY: (800) 497-4648
https://www.mahealthconnector.org/


Massachusetts Developmental Disabilities Council
108 Myrtle Street, Suite 202
Quincy, MA 02171-1791
(617) 770-7676

https://www.mass.gov/orgs/massachusetts-developmental-disabilities-council


Thom Child & Family Services - Early Intervention
251 W. Central Street, Natick Crossing Suite 22
Natick, MA 01760
508-655-5222

https://www.thomchild.org/


Family Ties of Massachusetts - Early Intervention
800-905-TIES (8437)

www.massfamilyties.org


Epilepsy Foundation of New England
650 Suffolk St #405
Lowell, MA 01854
Phone: 
617-506-6041
info@epilepsynewengland.org

https://epilepsynewengland.org/


National Council on Independent Living
1710 Rhode Island Avenue, NW, 5th Floor
Washington, DC, 20036
(202) 207-0334 (V);
(202) 207-0340 (TTY)
ncil@ncil.org

http://www.ncil.org


Children’s Behavioral Health Initiative (CBHI)
(800) 495-0086 | (617) 790-4000
https://www.mass.gov/childrens-behavioral-health-initiative-cbhi

www.mabhaccess.com


The ARC of Massachusetts
217 South St
Waltham, MA 02453
(781) 891-6270
arcmass@arcmass.org

www.thearcofmass.org


Relay Services
(800) 255-0135 (V)
(800) 255-0056 (TTY);, 711 (TTY)
(800) 229-5746 (Speech to Speech-English)
(866) 260-9470 (Speech to Speech-Spanish)


Special Education
Massachusetts Department of Education

75 Pleasant Street
Malden, MA 02148-4906
Phone: 781-338-3375
specialeducation@doe.mass.edu

http://www.doe.mass.edu/sped/


Massachusetts Association of Special Education Parent Advisory Council (MassPAC)
Schrafft Center 529 Main Street, Suite 1M3
Boston, MA 02129
(617) 236-7210, (800) 331-0688 (in MA)

https://fcsn.org/masspac/


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.mass.gov


Easter Seals Massachusetts
484 Main Street
Worcester, MA 01608
800-244-2756

https://www.easterseals.com/ma/


VSA arts of Massachusetts
89 South Street #101
Boston MA 02111
617-350-7713

https://opendoorartsma.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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