Montana

Montana

ADA Center
Rocky Mountain ADA Center
3630 Sinton Road, Suite 103
Colorado Springs, CO, 80907
(719) 444-0268 (V/TTY)
(800) 949-4232 (V/TTY)
adainfo@adainformation.org
http://www.adainformation.org


Assistive Technology
MonTECH Program
The University of Montana, Rural Institute
634 Eddy Avenue, CHC-009
Missoula, MT, 59812
(406) 243-5676
(800) 732-0323 (V/TTY)
http://montech.ruralinstitute.umt.edu


CHIP
(Health care for low-income uninsured children)
Montana CHIP
P.O. Box 202951
Helena, MT, 59620-2951
(406) 444-6971
(877) 543-7669
CHIP@mt.gov
http://www.chip.mt.gov


Developmental Disabilities
Disability Services Division
Department of Public Health and Human Services
111 North Sanders
PO Box 4210
Helena, MT 59604-4210
(406) 444-2995
http://www.dphhs.mt.gov/dsd/


Independent Living
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
(202) 207-0034 (V)
(202) 207-0340 (TTY)
ncil@ncil.org
http://www.ncil.org


Intellectual & Developmental Disabilities
The Arc of Montana
205 E Park Ave
Anaconda, MT 59711
(800) 432-6145/(406) 563-8117
mcaferro@aware-inc.org
www.thearc.org


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
(713) 520-0232 (V)
(713) 520-5136 (TTY)
ilru@ilru.org
http://www.ilru.org


Learning Disabilities
Learning Disabilities Association of Montana
(888) 300-6711
http://www.ldaofmt.org


Mediation
Early Assistance Program
Montana Office of Public Instruction
P.O. Box 202501
Helena, MT, 59620-2501
(406) 444-5664
http://www.opi.mt.gov


Mental Health
Family Support Network (FSN)
1211 Grand, Suite 6
Billings, MT, 59102
(406) 256-7783
fsntoo@aol.com
http://www.mtfamilysupport.org


Montana Mental Health Association
P.O. Box 88
Bozeman, MT, 59771
(406) 589-7774
(888) 927-6642
info@montanamentalhealth.org
http://www.montanamentalhealth.org


Addictive and Mental Disorders Division
Department of Public Health and Human Services
P.O. Box 202905
Helena, MT, 59620-2905
(406) 444-3969
HHSAMDDMH@mt.gov
http://www.dphhs.mt.gov/


Mental Health – Children
Children’s Mental Health Bureau
Health Resources Division
Department of Public Health and Human Services
1400 Broadway – Cogswell Building – Room A116
P.O. Box 202951
Helena, MT, 59620-2951
(406) 444-4540
Check website for local offices
http://www.dphhs.mt.gov/mentalhealth/children


Parent Organizations
Parent Teacher Association (PTA)
IDEA PTA (Individuals with Diverse and Exceptional Abilities)
P.O. Box 7724
Missoula, MT, 59807
(406) 728-1124
lotus@bigsky.net


Parent Teacher Association (PTA)
Montana Congress of Parents and Teachers, Inc.
P.O. Box 6448
Great Falls, MT, 59406
(406) 268-7475
montana_pta@gfps.k12.mt.us
http://www.montanapta.org


Parent Training and Information Center (PTI)
Parents, Let’s Unite For Kids (PLUK)
516 N. 32nd Street
Billings, MT, 59101-6003
(406) 255-0540
(800) 222-7585 (MT only)
plukinfo@pluk.org
http://www.mtpluk.org


Protection & Advocacy
Disability Rights Montana
1022 Chestnut Street
Helena, MT, 59601
(800) 245-4743 (V/TTY)
(406) 449-2344
advocate@disabilityrightsmt.org
http://www.disabilityrightsmt.org


Preschool, Disabilities
Montana Office of Public Instruction
P. O. Box 202501
Helena, MT, 59620-2501
(406) 444-3095
(888) 231-9393
opisupt@mt.gov
http://www.opi.mt.gov


Special Health Care Needs
Children’s Special Health Services
Health Care Resources Bureau
Department of Public Health and Human Services
P. O. Box 202951
Helena, MT, 59620 -2951
(406) 444-3622
cscott@mt.gov
http://cscott@mt.gov


Special Format Library
Montana Talking Book Library
1515 E Sixth Avenue
P.O. Box 201800
Helena, MT, 59620-1800
(406) 444-2064
(800) 332-3400
http://msl.mt.gov/tbl/tbl.asp


Speech, Language, and Hearing
Montana Speech-Language-Hearing Association
Box 215
Miles City, MT, 59301
(406) 234-8727
info@mshaonline.org
http://www.mshaonline.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.mt.gov/


Transition Services
Division of Special Education
Office of Public Instruction
P.O. Box 202501
Helena, MT, 59620
(888) 231-9393
(406) 444-3095
tharris@mt.gov
http://www.opi.mt.gov/Programs/SpecialEd/


UCEDD
The University of Montana Rural Institute
Center for Excellence in Disability Education, Research, and Service
52 Corbin Hall
Missoula, MT, 59812
(406) 243-5467
(800) 732-0322
(406) 243-5467 (TTY)
rural@ruralinstitute.umt.edu
http://ruralinstitute.umt.edu


Vocational Rehabilitation
Vocational Rehabilitation Programs
Department of Public Health and Human Services
P. O. Box 4210
Helena, MT, 59604-4210
(877) 296-1197
(406) 444-2590
vrinfo@mt.gov
http://www.dphhs.mt.gov/detd/vocrehab/index.shtml


Office of Public Instruction
P.O. Box 202501
Helena, MT, 59620-2501
(888) 231-9393
(406) 444-9019
http://www.opi.mt.gov/Programs/CTAE/index.html


Easter Seals-Goodwill Northern Rocky Mountains, Inc.
4400 Central Avenue
Great Falls, MT, 59405
(406) 761-3680 (V/TTY);
(800) 771-2153
michelleb@esgw.org
http://www.esgw-nrm.easterseals.com


Support & Techniques for Empowering People (S.T.E.P.) Inc.
644 Grand Ave., Suite 1
Billings, MT, 59101
http://www.msubillings.edu/mtcd


Montana Center on Disabilities
Montana State University – Bozeman
(406) 994-6701 (V/TTY)
http://www.montana.edu



VSA arts of Montana
200 N. Adams, MCT, Broadway Studio
Missoula, MT, 59802
(406) 549-2984



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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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